Gut Punched

Dear Addie,

I slept in. That’s right Ad, I blissfully slept and woke up AFTER the sunrise, a rather unusual occurrence for me. You crawled into my bed, snuggled in close and proceeded to play with my eyelashes. Your purposeful, yet curious touch to my eyes is in your own way a sign of your affection. It was Mother’s day and I couldn’t think of a better way for it to start it.

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As soon as you knew I was now indeed awake you snuck off to grab a book, but I’d only find this out when you return. Meanwhile, you and Gabe were like ships passing as he was bringing me breakfast in bed. After last years strawberry granola parfait - where he stated as I was almost finished “I m glad you liked it, I didn’t use the furry strawberries!” I was curiously (maybe even a little cautiously) awaiting what would be on the menu this year?

Never to disappoint, he came around the corner with the largest pile of pancakes I’ve ever seen. 8 tall with a huge glob of butter towered on top! Doing my best pretending to be only groggily (is that even a word?) awake, I witnessed the butter tumble down the tower of a nap on a plate, to which Gabe grabbed with his fingers strategically placing it back on top before happily handing me the plate and saying Happy Mother’s Day.

Seriously love this kid.

Clara came in next with my coffee, you returned with a Doc Mcstuffins book for a quick storytime, then I was showered with amazing cards and gifts!

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Clara and Gabe even pooled their money together to buy me a gift card to Target ;)

All of this was just the icing on the cake because I honestly need no gift for this day because having this family is really all the gift I could ever need (well that and of course our traditional Jason Menzo made from scratch pina coladas;)

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Even with my repetitiveness of gifts not being necessary, Clara and Gabe ask every year for gift suggestions, so I like to have a little fun with them ;)

Now this mommy fun consists of me telling you all something to see if it gets back to daddy correctly. Kind of a game of family “telephone.” This year I requested Lady Walton cookies in chocolate mint and chocolate raspberry. I know crazy specific right?! This particular discussion took place roughly two months before this weekend and every time I asked if Clara or Gabe remembered the name it got funnier and funnier! Women fingers, lady waters, lady wontons - the list was hysterically long, but the name was never 100% correct. So I was truly shocked when I, in fact, opened my beloved Lady Walton cookies this weekend! Come to find out daddy overheard the whole conversation and was on it! Yes Ad, he’s that good ;)

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With our morning off to a great start, it was time for church and emotion I truly didn’t see coming.

Let me start out by saying last week I happen to come across another fellow special needs mamas vlog and she was talking about grief and sadness and how it can hit you when you least expect it.

There we were at church, sitting in our usual spot, except there was a wealth of new faces among our familiar crowd. It wasn’t just Mother’s Day but also the first of a few weekends of first holy communion for many 2nd graders in our faith.

With such a large crowd and additional commotion, daddy decided to walk you around a bit to ease any potential anxiety and stress. As I sat with Clara and Gabe we watched a sea of beautiful girls in white dresses and well dressed young men line up one by one to receive their blessed sacrament. I started thinking back to Clara’s and Gabe’s communion and could remember the details of it all so vividly.

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Then unexpectedly it hit me - I was overcome by sadness as I held back my tears trying my best not to make a scene of myself in front of all these new people.

Working at the school I've come to recognize just about all those sweet faces and some being dear friends taking communion. I was SO proud and happy for them, but I also felt gut-punched all at the same time.

I wanted this for you.

I didn’t see any of them trying to splash in the baptismal font or blow out the candles yelling “happy birthday!” and clapping to the accomplishment of extinguishing the flame. Something I would put money on that would happen if you were up there on this day.

I know it’s all perspective, and I know there’s an alternate version in all this. You can do it at a later date, with a sponsor - I’m sure the accommodations are all there, but sometimes, just sometimes not needing any special accommodations, curious eyes or an exit strategy is something dare I say I want.

I wanted you to know what this was even all about. I wanted you to have an opinion on what your dress looked like or what shoes you wore. I wanted you to feel the warmth and love of this day with everybody else your age as it’s intended.

As you can imagine these feelings can easily turn into a weighted blanket of guilt, but I try to remember that it’s just human nature to want what we don’t have.

On the way home I tried to remember perspective. It’s a beautiful humbling thing. While the big picture in that moment left me sadden, I thought back to our morning. I had to wonder how many mamas would’ve loved the opportunity for their 8 yr old to share snuggles or unspoken moments with them. Moments that had no words but unmeasurable love.

It’s so often the older our children get, the more fleeting these moments become and we end up longing for them again. I'm blessed to still be in the thick of these moments with you. This my dear is very special to me.

So, Addie, we didn’t put on a white dress this weekend, but one day we will and I’m sure you will have an entire community of people there loving and supporting you and I’ll be crying for a whole different reason on your day.

I don’t have the answers on why our journey is what it is, I can’t stop moments that will inevitably gut punch me no matter how hard I try. That’s life. There is still so much I don't understand and heck I may never fully understand it, but if there is one thing Daddy and I are 100% for certain of is we were all meant to be together, Clara, Gabe, You, mommy and daddy - One Team, One Dream in this life.

Thank you for blessing me with getting to be your mama sweet girl.

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I love you.

Love,

Mom

Love and Support

Dear Addie,

As long as I can remember, you sister and brother Clara and Gabe have always enjoyed us being at their schools or events that were special to them. Whether it be field day, choir concert, art show, baseball or soccer game, or dance recital - we made it a point to be there. If we couldn’t both be there, daddy or I would do our best to be there by ourselves.

While they know they are loved and supported always, our presence was, and is, always the icing on the cake for them. I mean who doesn’t love a cheering section right?!”

Now I’m not gonna lie, while we have tried our very best, it’s easier said than done. Addie there was a good two-year window that I felt like we were at the school weekly and I, being a stay at home mom (at the time), was really envious of the two-working parent families that seemed to attend everything looking so picture perfect. I always felt like I was rushing in, shirt on backward with two mismatched shoes on the wrong day (I wasn’t really dressed like that, but it felt that way.)

Can't find your mom? Oh, she's the hot mess in the corner - yes getting out her camera that she's about to find out doesn't have an SD card in it. Side note: I hate to admit it but that has happened more than once.  Daddy, usually coming from work may have had the appearance of someone with it all together, but we know better, right? :)

It’s true, most times our presence didn't represent the typical cheering section, with your early onset sensory issues in large crowds - it was all too much for you to handle. We often found ourselves perched well beyond the crowd in what felt like a field of nothing, but we were there.

With whatever mess I personally found or felt myself in, Clara and Gabe seemed to only love that we were there - and that's what mattered. Kids are kinda awesome that way! Mommy is always Mary Poppins and practically perfect in every way in their eyes. I’ll take it! When they’d ask me after whatever it was I was there for “did you see me mom?!?!” all full of excitement and the biggest smiles plastered on their faces, I could say “yes, yes I did!”

They knew they were loved, they knew they were supported.

Fast forward to present day.  3 kids, 3 different schools, 3 different schedules, 2 working parents and often times in 2 different states - for us...the struggle is real. Having said that, this past week was Special Olympics and neither dad or I were there. The stars didn't align, our schedules were all overbooked and we just couldn't make it happen. If you happen to look through the crowd for our love and support that day, it was absent in the flesh, but hopefully you knew in your heart we were with you.

This was heart breaking for mama.

You see Ad, I know as parent we can’t do it all, I get that, but when you have children such as yourself that you know really thrive on routine - which is about to be disrupted, are overly sensitive to sensory distractions - which are about to be plentiful and may need the extra support and encouragement, it’s hard not to worry or feel bad when you can’t always be there.

Who would be there to show you the support you needed?!? Would you feel abandon somehow at our lack of presence? It ate away at me all day. Then I was reminded that while we have plenty of challenges in our day to day life, the dream team runs deeper than just our party of five.

 As I was at work rushing around per usual, my phone started to chime, text messages were coming in. Now I don’t normally check my phone at work, but with you not being at school and your recent elopement issues, I had it close by that day. It was your teacher. My heart stopped for a second with me thinking the worst, but then I opened it up...

You were on a break for lunch and she took the time to send me a few pictures and an update on how well you were doing!

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Addie I almost burst into tears. Yes of course I had asked if at all possible that someone snap a picture, but I’ve been there, I know it’s “all hands-on deck” so I wasn’t anticipating anything but an update at the end of the day.

This was a pleasant surprise indeed.

You were doing great and even snagged yourself a 1st, 2nd and 3rd place ribbon in your events this year! Way to go baby girl!

Still a little bummed I missed the excitement, I felt better knowing you had done well (no major meltdowns), and your teacher was equally as proud of you.

Fast forward to after school and I had to swing by the vet to grab a Rx for Ruby. As we were waiting for the receptionists to run our credit card I was desperately trying to keep your hands out of your pull-up (it was hot and you had peed, so I’m certain it was uncomfortable and you digging around in it had me thinking my hypothesis was accurate - Dear Addie: I wouldn’t be upset if you wanted to use the potty on a consistent basis anytime now. Just saying.)

Anyway...

As I was trying to keep your hands in the open and out of your pants, a young girl (maybe 5th grade) and her mother came in. We shared a smile, mine was seemingly exhausted from playing WWF with you and this pull up dilemma, while I thought theirs was more like - we’ll be sure to bring this encounter up tonight at dinner. I mean you don’t see this scene happening too often!

After a minute or two the young girl said to me “did she have Olympics today?” I said “As a matter of fact yes she did! Special Olympics!” She asked genuinely interested how she did and seemingly not bothered by your trying to adjust your pull up...I went on to tell her how great you did taking home a 1st, 2nd and 3rd place ribbon. She was really excited for you and then she said “I go to Oakview and we cheered her class on in the hallway!”

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My heart melted. Addie I wasn’t there, but your school was behind you, supporting you, showing their love. Not just your teachers, but the students too.

I’ve said it a lot, but your school is amazing. Fact.

I know as parents we can't be everywhere, maybe it’s God’s way of slowly preparing us for one day letting our babies fly solo in this crazy world, but it's just a completely different feeling when your child can't give you the play by play. There’s no conversation of which event you liked the best, or how the bus ride was. We’re just not there yet. Perhaps that’s why the visual presence just means so much to me.

So Addie, this past week we couldn’t be there, but with all the worry and guilt I may have had, there was no shortage of love and support thanks to your amazingly “owl”some school.

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Great Job Ad! We’re very proud of you.

Go Owls!

Love,

Mom

 

 

 

 

 

 

 

 

 

A Spectrum Disorder

Dear Addie,

This past week we celebrated the last days of yet another Autism Awareness Month. While I’m not sure if “celebrated” is the appropriate term, nevertheless we spent an entire month doing our best to educate others and advocate for you as well as all those in our special needs community for acceptance and awareness. Now while this month falls but once a year, it realistically is every month for families like ours.

Addie, have you heard, perhaps a time or two, that you have something called a spectrum disorder? Fancy title huh?! This is an umbrella term that “autism” is classified under. Spectrum is really just another way to say “wide range.” Autism can range from affecting people mildly to severely and everywhere in between - hence one of our favorite phrases ”if you've met one person with autism, then you've met one person with autism” no one is the same. Even the varying degrees of autism from mild, moderate, moderately severe, to severe sometimes can get confusing because you can fall in a few different categories, being severe is areas or moderate in others, the overall majority ranking from numerous detailed evaluations and testing give us these results and “titles” if you will.

I never been one for titles just so you know Ad.

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Having said that, you my dear are classified as having autism on the severe end of the spectrum. Now you’re probably wondering - what does that even mean?

Well severe autism also has a couple other fancy names like low-functioning autism, classic autism, or profound autism. This classification is really just identifying autistic people with the most significant symptoms.

It’s true we have extraordinary challenges ranging from communication, to sensory difficulties, or even executing the simplest of fine motor tasks on a daily basis. To be honest with you, this week alone left me in tears multiple times and feeling quite guilty for wanting to rush through the day so we could just go to bed and give this life another chance tomorrow.

Addie there’s a lot doesn't get talked about on this journey - including the mental health and well-being of family members in special needs families. It is not unusual for a people with severe autism to require 24/7 supervision, you know so you don’t jump the fence, balance dangerously on the railing of a two-story balcony or jump in a washing machine to splash and play (just to name a few of your favorite Eval Knievel activities.) It is exhausting. Add in a very healthy dose of screaming for reasons we can’t pin point exactly and it can be a lot to deal with.

Therapies, medications, constant adaptation of our environment, research, evaluations, IEP meetings, headphones, sensory calming toys, advice - it's all never-ending.

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I saw this picture online recently that said “special needs mom sleep, it’s like regular mom sleep without the sleep” - wildly accurate, especially with kids who have trouble sleeping and like to elope, no matter the hour of day.

More coffee please!

Now with all its challenges, It’s also sprinkled with us bearing witness to some of the most beautiful innocence I've ever seen. You find joy is some of the absolute simplest of things and it’s always a great reminder for our own lives.

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Please always remember my dear that my frustration and exhaustion for some of our autism challenges never ever means I don’t love you, in fact it’s exactly the opposite! I want to understand, help and love you with everything I have.

On this journey there is a very common misconception that autistic individuals, especially those on the severe end of the spectrum, have a limited threshold for being taught or the ability to learn new skills - that is a lie.

It is a lot of work, and yes it may take a lot longer but you are fully capable of mastering new skills just like everyone else.

You may not be able to articulate a spontaneous conversation with someone, but you can do laundry at the young age of 8 years old.

You are a visual learner Ad, language is really hard, there is hundreds of thousands of words that make up the English language. Having to sift through pages of words in your head to hold a conversation is daunting, but the step by step process of doing wash is somewhat black and white in its regiment so it becomes easy for you.

Our journey with this spectrum disorder is surely different from most, but I’d like to think we are all the same still kind of similar in the big picture.

We have our challenges, get frustrated, scream, cry, feel defeated, heck all families I’m sure have problems communicating, but we also help each other, learn something new every single day, keep trying if we fail, love with all we have and remember that everyone (autism or not) is an active participating family member - One Team, One Dream.

Love you Ad.

Love,

Mom

A Curve Ball

Dear Addie,

Spring break has arrived! Finally! With our crazy, nonstop schedules, this is a time we have ALL really been looking forward to! With the anticipation of this glorious break, daddy had booked a much needed, super fun trip to the beach for a little R&R!

I mean a beach trip sounds like fun, sand and sun - who wouldn't love that? Sounds perfect right?! Ha! That last statement is kinda funny because anyone who knows me well knows I have a tremendous fear of sharks...eek! For real though, I even track the tagged sharks in an app on my phone! God bless the researchers for tagging them, because it gives me the inside scoop on where not to go since I don't want to become an appetizer...but then again there's more than just the handful tagged so...back to square one on the anxiety!

It's true, I constantly worry that even in knee deep water (my comfort level) that you will all get gobbled up by a giant megalodon. Add in the fact that you are no Michael Phelps and your love for tasty salt water with your pica deficiency - its stressful.

Sprinkle that with fellow vacationers sharing the same hotel that may not be as compassionate with some of your mannerisms (they are everywhere and I'm still looking for that thick skin to help me out there). All that said, it’s just my anxieties getting the best of me. **Side note: Any anxiety you may have these days, sorry kiddo it probably came from me. Daddy gave you the cute dimples ;).

Lucky for us we have daddy and he has a way of making everything run smooth and coming out on top with fun always being the end result. So one team one dream the beach was happening and we were excited. Even me - heck, we even all got new flip flops!

With our plans happily set for months on this beach trip, the universe somehow felt differently a week beforehand, and unexpectedly the sandy beach vision all started crumble before our eyes. Plans changed for a number of reasons, and our warm sandy beach vacation was going to have to be postponed, as we headed off to the mitten state for a visit with our family. No sand, but plenty of warmth from the love of our family.

You see Ad, some of our elderly family had been really struggling the past few weeks, and a good visit seemed to take precedent to potentially being shark treats. All joking aside, this family is truly blessed with longevity and you have four great-grandparents (yes four!) still living and full of love for you. So it was without question that northward we went.

Being the amazing children you all are, just being together - whether it be at the beach, or in a car for 12 hours, y'all were happy just getting a break from our usual chaos. Y'all are awesome just so you know.

No strangers to a road trip, we packed everything but the kitchen sink - including the dog (and not the little chubby beagle, but rather the 80lb hound dog. Maybe this all was a blessing after all, as Ruby unexpectedly got sick and wasn’t able to be boarded. Next thing you know, she’s in the back of the minivan with you guys. Onward!

We started driving the opposite direction than previously planned - but we were off! Let's do this! Michigan here we come!

While mommy and daddy's home state is not a new place, and somewhat predictable for you, you can throw us a curve ball at any turn, and we were going to visit some places that we had not previously been, so we were definitely staying on our toes this trip.

First up - the nursing home to visit GG Joy, daddy’s grandma and your great grandmother.

While our family is rather familiar with nursing homes or retirement centers - volunteering our time as often as we can, you my dear have had few visits for very good reason. Predictably unpredictable is probably the most accurate title for your life and any unpredictable squeal or shriek could startle someone (and you never know what could happen). Not to sound horrible, but this is especially true for someone with a heart condition. Things could end badly. We can coach you on using your inside voice, but that coaching becomes white noise in a new and unfamiliar place, so mommy and daddy needed to be on our A game!

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Luckily for us this nursing home had a quiet library which we had all to ourselves, and they even brought us ice cream! Score!

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Honestly, it was only after visiting all four of your great-grandparents on this trip did we realize how much that they use tissues let alone all the people around them! If there's one thing we know about you is the tissue represents the potential auditory assault of nose blowing. You were ready to pounce no matter their age - I'm happy to report you didn't, but there were a few times it was touch and go.

After a much needed and successful visit with GG, we were headed off in the freezing Michigan rain to the bowling alley for some birthday fun for uncle Nick’s 40th.

To our benefit the bowling alley was relatively empty with only our party and one other that day. It's funny all the years going to bowling alleys (kind of a Supernaw thing), I never realized all the sensory stimuli that exist there until I had you and was more tuned into our surroundings. The lights are low and they had neon swirling lights whirling around the lanes, the sound of balls crashing into the pins, the old smell of what seems like metal and stale smoke embedded into the walls in a only recently smoke free environment. To someone who has challenges in differentiating sensory distraction this can be a lot to take in!

Not sure how all this was going to go, we brought our bag of tricks along to the party just in case. We were ready! Much to our surprise you did great! You only had one setback when I had to run to the car to grab something, and you proceeded to throw yourself to the ground face down on the far from clean bowling alley carpet. Trust me you've done worse. As a side note we also realized very quickly that your need for independence, excessive sensory stimming and carrying a bowling ball don't exactly go together unless you want to lose a few toes or break a foot. Good news no emergency room visits were needed, you kept all your toes and we all successfully bowled! Woohoo!

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We were hitting home runs everywhere on this trip, but you were about to throw a curve ball in a reminder that gone are the days of letting you be alone.

While sitting in the living room at nana and papa's the sound of you happily playing in the toy room/basement was echoing through the house, but all of a sudden it sounded like you were splashing and playing in water? Curve ball thrown! Nana busted on the scene to you standing in the washing machine and you had turned it on to fill with water! What in the world?! You were lucky the lid didn't close Addie, very lucky. I truly believe you have an abundance of angels watching over you! For added fun, you also put a box of girl scout cookies in the dryer - and yes turned it on!. Addie what is your obsession with the washer and dryer?! You were safely removed and everything was unplugged! It's safe to say you were never alone for the remainder of the trip. Nor these days are you ever left alone at home either. Sneaky, sneaky Addie.

If I could give parental advice to anyone it would be never say never. All kids will eat and do things you never could have imagined. Promise.

Moving on, Easter!

The Easter bunny happily found us in Michigan - phew! You did a great job finding all the hidden eggs making sure to crack each one of the side of your easter basket like you were making a cake or something before dropping them in.

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Eggs, baskets, too much chocolate - that's our cue it was time for church!

Now I know you've figured out by now, but I'm not one to put big puffy Easter dresses on either you or Clara. Just not my style my dear. But it didn't stop me from buying a new Easter outfit for you to look nice in.

Another curve ball is in the line up!

This new one piece flowy pant style outfit for church left you feeling anything but comfortable as you demanded ”a pants! a pants!” It wasn’t tight to your legs so it felt like a skirt and all sorts of uncomfortable to you. So while I was upstairs grabbing leggings to give you the tightness on your legs that you were needing, you wasted no time trying to solve the problem on your own and off to papa's hamper you went. By the time I had returned, you already slipped yourself into a pair of papa's blue jeans to try and make your outfit better - it was quite a get up you put together! Look out Ralph Lauren! You seriously had nana and I in tears laughing!

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We went to church where you saw more of the playground than mass, ate Easter Dinner at Grandma Menzo (or "Garara's" as you lovingly call her) and papas, while enjoying all the blessings family brings on such a special day.

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We visited family as often as possible, played at parks

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and even tried out a swing made out of an upside down tree!

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So cool! Memories made - check!

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So this spring break didn't exactly go the way we thought it would, but predictably unpredictable is what we are used to, so all was good. Even if we had some curve balls thrown at us.

Love you baby girl!

Love,

Mom

39 Minutes

Dear Addie, 

 

This week I was reminded of one of the more unpleasant aspects of autism - meltdowns.

To an outsider looking in on these unfortunate events can often be mistaken as a child (or adult) throwing an epic tantrum and most certainly in need of a time-out!

While both tantrums and meltdowns generally have a fair share of crying, screaming and perhaps even throwing oneself to the ground, the truth of the matter is tantrums and meltdowns are two very different things.

You see Addie, a tantrum is something that children, roughly up to the age of 5 developmentally (that age range is from a number of experts and not my personal timeline of what age I think tantrums should stop - just so we’re clear), do over an objective of getting what they want. For example, they may see something they want in a store and throw a tantrum of screaming and crying in hopes that their parents will become weak and cave into their demands for said object.

This only has two outcomes, “nice try” or “well played” kid.

A meltdown however has far less control and unfortunately is never outgrown. Autistic individuals like yourself often have a hypersensitivity to emotions of others, themselves or the assault of sensory stimuli present in your environment.

**This is interesting because it's a common misconception that people with autism lack feelings or understanding of such - when in actuality they may be more tuned in than one would think. Now emotions are pretty self-explanatory, but stimuli of your environment can be a number of different things and classified as noise, the behavior of family members, a sudden change in routine, words spoken or sounds you may hear, things you see or even feel physically just to name a few.

Another big difference between tantrums and meltdown, tantrums usually end if a child is perhaps lucky enough to get what they want or they have endured the consequences of their behavior (time out etc.) Meltdowns however can last minutes, hours, and God forbid, sometimes even days. They are an emotional storm that lacks capability of rational thinking.

Sometimes I wish as parents it’d be nice if we got a message - Warning: system overload!

Nope instead we just have to be vigilant in looking for the signs. If I’m being honest, usually we are pretty good at recognizing potential meltdown scenarios, but life sometimes can come at us fast and we may miss this along the way, we are all only human after all.

This week we had a meltdown because... I washed your blanket.

What was I thinking?!  Well...

It all started when I woke you up that morning. The smell hit me like I was sitting on the wrong side of a porta potty on a breezy Saturday afternoon soccer game. Ah yes, urine. You had wet the bed and from the 3 bottles of Gatorade you smuggled into your room that were now empty and scattered about your bedroom floor - that poor pull-up never had a chance.

You were wet from head to toe as was anything in your path, including your beloved blanket.

I promptly put you in the shower and went on to strip your bed. It was a working day for mama so I thought I could throw it all in the wash and dry it when I got home - ha ha ha, wishful thinking mama!

I went to put everything in the washing machine only to realize a load I had washed 2 days before was still sitting in there and surely pungent with less of a fresh fabric softener and more of a mildew aroma by now. I never even opened the door to give it a smell test, I piled your bedding, jammies and beloved blankie into a pile and ran the cycle again.

To add insult to injury we even have a smaller drawer washer - that realistically could've only handled your blankie from the Mt. Pee Pee piled high on the laundry room floor, but yes that too had 2 day old laundry in it. Not my finest week baby girl.

Mt. Pee Pee was going to have to wait until after work. I closed the door and assisted you in getting washed up and ready for your day.

Fast forward to getting home from work and life takes over.

With our back-patio door acting more as a revolving door with kids and dogs opening and closing it every 5 minutes, the pollen from NC’s most recent pollen apocalypse was now taking up residency on everything in the screened-in porch and creeping its way inside the house. I had suddenly forgotten all about Mt. Pee Pee and thought ahead to the sneezing, sniffling noses and tissues that could come from this! I saw a future of auditory assaults for you (and us suffering your wrath of screaming and hitting!). Cleaning the porch became my new priority.

The porch, sweeping, vacuuming, dinner, before I knew it it was time for you to get ready for bed. Crap! It was 7pm and Mt. Pee Pee still stood tall in the laundry room - ugh!

Ok, no worries! I can just run everything on an extra hot, quick 15 min cycle and it'll be washed and dried in no time at all! Perfect!

I opened the washer of my “re-washed” clothing from this morning... Seriously?!?!? Gel beads everywhere! Noooooooooooooooooooooooooooo! A rite of passage for many parents, I had washed a pull-up. Not once, but twice!

This load was about to run on 3rd time being the charm. I fished the culprit pull-up out and begrudgingly ran it yet again.

Now Addie, you could do with perhaps some baggy, illfitting sheets, but no beloved blankie - that wasn't even a possibility! No way, no how! It was only now that you even realized I had removed it from your room in the first place and all hell was about to break loose.

Now it's fairly well known that structure and predictability are an important thing for many autistic individuals. For you, your blankie had been with you since the day you were born. It has shared a similar bond as that of the well-known Charlie Brown character Linus had with his beloved blanket.

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You used to take it EVERYWHERE, but in the last year it has taken strict residency in your bedroom - only leaving on your accord (rarely) or if I happen to sneak it away to wash it while you're at school. It is a staple to our nighttime bedtime routine!

On this day you saw your blankie, wet, stinky, sitting at the top of Mt. Pee Pee and OUT OF YOUR ROOM! Surely you were thinking - what was going on here?! You were tired and ready to snuggle into bed with your blanket, but unfortunately you were now instantly agitated as you stood looking at it out of place!

Unfortunately, I was about to take it a step further. You see Addie, this wasn't just pizza sauce, dirt, or marker...this was urine. I let a lot of things slide, but this was gross and needed to be washed. With round 3 happening on the top washer, my only option was the drawer washer who quickest cycle was 39 min.

As you stood clenching the ammonia smelling lovie with a look of anger and betrayal towards me, I had no choice but to take it back for the next 39 mins.

Deep breaths.

You being tired worked to my benefit to free it from your grasp, but as the washer locked and I pushed the drawer in you became unhinged.

You hated me. You started sobbing ”a blankie, a blankie, a blankie” frantically trying to pull the drawer open to free it from what to you seemed like its demise!

You grabbed my hand and pulled me toward it trying desperately to get me to open it. I knew this was going to be the longest 39 min ever. It was heartbreaking.

You collapsed to the floor, next to the remaining pile of Mt. Pee Pee and I knew we had to get out of here before you found yourself thrashing about in that gross bedding (the laundry room isn't that big). We made our way to the hallway and I locked the door.

**yes, we have a chain lock on our laundry room because you are very observant and can run loads of wash on your own. Awesome right?! Except it’s generally alarm clocks or magic wands that you choose to wash and to add more fun to the mix, you've taken a liking to the taste of laundry soap. Addie, STOP EATING THE SOAP!

Now back to the hallway...

You repeatedly pushed me to the door, lifting my hand toward the lock almost pleading without words for me to open it and rescue your blankie.

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You cried, screamed, fell to the floor, drooled & snotted everywhere while repeatedly trying to bust down the door.

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I tried breathing exercises counting down from 10 to 1 - that worked only once and you were back at it sobbing where you left off. I literally couldn’t even trick you into counting and breathing second time. Any sort of redirection at this point from songs, to toys, or snacks made it worse. We just had to wait this out.

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I’ve never been so excited to hear a laundry cycle finish as I was when it did that night. I pulled the drawer open and popped the lid where you promptly removed your precious blankie. You held it tight and made your way downstairs still sniffling and catching your breath from crying so hard.

I guess it was safe to say I wasn’t about to get that thing in the dryer - nope! Not a chance mama!

I followed you downstairs, you were exhausted and still somewhat agitated, with no energy for words you handed me a bowl. Luckily for you I knew what you wanted, popcorn. You sat with your wet blanket scarfing down popcorn faster than I could give it to you. Your body somehow was feeling a need to refuel after such exertion.

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You cried over anything and everything until finally falling asleep at 11:47pm that night. I sat that night after you went to sleep for 30 minutes on the couch in silence. I kept seeing your little face looking at me as if I had betrayed you. It hurt. I just felt so bad that it got to this point. I too was spent.

Addie I am so sorry you had to go through all of this. These episodes can be so hard on you and all of us, but you know what? We got through it, together.

Breath in, breath out. Blankie was all fine in the end.

I love you baby girl.

 

Love,

Mom

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Hurdles

Dear Addie,

A lot has been going on in our lives and it’d be amiss if I didn’t mention a new sensory friendly opportunity we took advantage of a few weeks ago.

Before I begin I should say I hear more times than I can count about how much patience I have, or that I have the patience of a saint! While I appreciate the compliment, and I guess maybe in certain situations I have acquired a knack for letting some things just “go with the flow,” the truth of the matter is that I’m not a patient superhuman. Sometime my patience is just dangling on by a thread. True story.

Now, having said that, we were off to our latest sensory friendly night at Defy Gravity indoor trampoline park.

These trampoline places are popping up everywhere and are all the rage these days! A seemingly endless amount of trampoline flooring, Tarzan style ropes, and platforms to jump off of and crashing into foam pits. This particular one even had American ninja warrior style course and a playground swing hovering above the foam pit! What’s not to like?! Right up your alley! Sounds perfect right?!?!

This is actually a dream for many sensory seeking kids, but on any “normal” given day, it would be full of kids bouncing and running in every direction and a lot of rules. Not exactly your forte in a place of potential overstimulating excitement. A sensory friendly night was a perfect opportunity to get a feel for how all this excitement was going to go down for future visits and learning those all to important rules.

Having not been here before, I think it’s safe to say I was naive to the whole process (shocker not all indoor trampoline places are the same.)

While we are insanely appreciative of businesses offering such a special time for families like ours, it started at 7 on a Thursday night - not the most convenient when your bedtime is in fact 7.

One of my biggest struggles as a parent (I’m sure many parents can relate) is finding something ALL of my kids enjoy doing together. I knew this was going to be fun for everyone, even if it meant being a little crabby the next day from lack of sleep, so even with that in mind we were all in.

Armed with with information of a location, date and time we had arrived. The sight of it all sent you happily stimming into a frenzy of excitement. You made it all of about a minute standing in line before you took off running for the fun. Luckily for me, nana and papa were visiting and were helping as Addie security bouncers as I stood waiting to check in.

Now we have been to similar establishments for birthday parties in the past, but I was unprepared for the hoops I had to jump through before you could even get started.

As team Menzo/Supernaw was holding you back from unlawfully entering the “jumpzone” it was finally my turn in line.

I fully expected to sign a few waivers for attendees jumping, grab some neon paper bracelet, pay and be on our way - ha! What was I thinking?!?!

The young man at the counter greeting us then asked if we already had waivers on file? My ”no, we’ve never been here before” reply resulted in him pointing to a row of touch screen computers across the room in the lobby to sign everyone in. Ok, waited in line to be redirected - check.

Got to the screens and began signing each of our jumpers in. Your name, birthdates, emergency contacts, consent. Done. Back in line to wait again. Round 2.

He looks everything up in his computer than asks if I had a waiver filled out? I initially thought perhaps he had mistaken me for a teenage babysitter that possessed enough energy at this time of night to bounce around, but then he asked how many bystanders we had with us? Ah yes, wishful thinking of my youthful looks and the utter confusion on my face resulted in him explaining my next hurdle - in addition to jumpers, all bystanders ALSO had to have waivers on file. Seriously?!?! What exactly goes on here?! Back to the touch screens for round 2 - check.

Meanwhile Daddy had just arrived from work so we had an extra security bouncer stopping you - it was now 5 on 1 and you were wearing us out!

I had now filled out electronically 7, yes 7 individual waivers. Even for the savviest of touch screen users could easily have taken 10 minutes - for me it was about 15-20 minutes of stress as I could see (and hear) you visibly upset waiting and I was now heading back in line for the 3rd time. Third times a charm tight?!

Ok, maybe now he’d just take my money and let us jump - please dear Lord!

Nope, next hurdle.

He asked, did we bring jumping socks? Wait what?! What are jumping socks? We had regular socks - I don't recall seeing them jump. I mean they surely don't jump into the hamper at home. Nope, no jumping socks here, luckily for us we could purchase them here. How convenient.

For. The. Love. Of...

Ok, surely now I could pay him...

He asks how many hours we’d like to jump? I'm sure this was a question that could be answered by most but having already been slightly over-annoyed at this process I'm pretty sure I replied something along the lines of ”did you want my blood type next?!”

It was 100% unfair to this poor young man, but nothing about this process was easy and the ad for this event maybe couldn't given more info like - sign waivers online before you come for you, your neighbors, and your grandma's fifth cousin (heavy does of sarcasm intended), bring jumping socks - only the ones that made it into the hamper the others are broken, but don't worry you can buy some!

My patience was hanging on by a thread.

He handed me all the paper bracelets and we were finally ready to jump!

With all the drama and my lack of patience, you all were in jumping heaven in no time flat - success! I was reminded why sensory friendly events are so special - even if there's a thousand hurdles.

The anxiety is gone. Your stimming, noises, being constantly coached on turn taking - it all seemed just normal here. Nobody stood just staring. The siblings all seemed to know the same delicate dance of flipping, jumping and running alongside their special needs siblings and others like it was just so natural and matter of fact.

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So Addie, I'm so happy you had fun here. I'm sorry if mommy may not have presented my best self on this day. I'm living proof that nobody's perfect and special needs parents don't always have patience.

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But I do have tons of love for you all.

Love,

Mom

When Did You Know?

Dear Addie,


It’s no secret that this journey was something we had never “planned”, but here we are - 8 years in. It’s said we never stop learning throughout our lives and I’d like to think we, this dream team are living proof of that! We are learning new things every- single -day. All of 5 of us. With a first class ticket in this educational journey we have vowed a life of advocacy for not only you, but for others who have also found themselves in Holland rather than let say drinking wine in Rome. Ooh la la! (Guess what, there’s wine in Holland too ;)).

With this life we chose complete transparency and that came from a place I found myself in when I first read an evaluation of you with the words “suspected autism spectrum disorder.”


I had no idea what autism was or knew anyone with special needs for that matter. My mind had a vision of autism that I’d be embarrassed to tell anyone about today. I was completely uneducated on this. Yep, that was me - your mother.


Don’t get me wrong I had perhaps seen individuals who I know now more than likely had autism, and I never made fun of or bullied anyone, EVER, but I also never took the time to understand them or try to educate myself. My young self thought like most - this didn’t directly affect me.


My loss.


Fast forward to life today and the number one question I get from people is “when did you know?”


The question I’m sure is always in reference to your autism and not when did we know your hair was going to be brown instead of red, but I digress...


If I’m being honest, the answer is, well, never - on our own anyway. It wasn’t until after many evaluations did someone tell us this was in fact what was going on and explained it in a little greater detail. I didn’t know what autism was. But I did however know you were uniquely different the moment I met you.


Allow me to explain.


We sat in a routine 18-Month well visit for you, and after filling out some milestone charts, we were suddenly being referred for further evaluations.


Wait, what was going on? Why?


I didn’t understand why not talking was a “red flag.” I mean have you met your brother and sister? They never stop talking! In fact they are usually talking over each other! You probably just couldn’t get a word in if you tried! No problem here! Right?!


Clearly that’s not how language works Addie.


I remember leaving confused thinking how did I miss this? This was my most important job - mom, and somehow I felt like I had failed. Insert all sorts of guilt of what I probably had done wrong or what I missed.


We went on to complete the evaluations and the moment I read the report is literally seared into my memory.
I remember reading those words: “suspected autism spectrum disorder” and being angry and somehow initially felt we had just wasted our time! Now I wasn’t angry at you Addie, I was angry that I didn’t understand. I am your mother, I’m suppose to know you best. But here was this well educated women who did a pretty amazing and insanely thorough evaluation of you, and had identified areas of development that were in fact deficient to the “norms” of kids your age. And then, staring me in the face was this somewhat potent term of your suspected diagnosis, penned in black and white. Caught me off guard I guess.

She was saying you, my child was indeed different and I wasn’t prepared to hear it. If I’m being truthful, I guess somewhere deep down I already knew in my heart this was the truth, she just had a name for it.
Sensory processing disorder, severe speech delay, severely below age-expected limits, suspected autism spectrum disorder...the list went on. It was all so much to take in.


I remember thinking, Autism? Wait...what?! That can’t be right? I mean I know you didn’t cry when you were born, you were always shockingly awake for a newborn, sure you were quiet, had a unique way of getting your needs met on your own, intricately played with your toys in a pattern for only 30 seconds at a time, you seem to get upset at gymnasiums, restaurants or sterile bright lite offices, reacted to certain low toned sounds like nails on a chalk board, never - and I mean never slept, but surely that wasn’t autism?! Was it?


Then I got sad. The more I thought about it, the more I realized that you somehow didn’t “need” me like your siblings did. I mean, you needed me for food, diaper changes, baths, etc., but it was just - different. You never stood in front of me with your little arms and chubby fingers stretch high insinuating you wanted to be held, to be comforted. You were content on your own. Was this autism?


My mind swirled out of control.


You see Ad, when a once younger, pre-kid version of myself thought of my life with kids, it was a beautifully perfect vision (of course everyones is right?!) It had all of you growing up, getting jobs and having families - none of it, not one second of that vision included autism. Why would I ever think it would?


Therapy, sensory diets, special education, speech, potty training still at 8, I wasn’t prepared for any of this - I literally had zero experience. I was angry because I was uneducated and felt insanely lost on what to do. I, me, your mother was suppose to take care of you, and I simply didn’t know how now. I went from angry to accepting and terrified within the hour.


It was emotional chaos.


When you get a diagnosis in something that changes the trajectory in which you thought your life was going, it’s like you see your life lived flash before you in a matter of seconds - looking for everything along the way you think you should’ve seen or missed. But then, as it should, the flashing stops and here stands you, my sweet girl, the same girl as before I read those words, the same girl you were always intended to be, our tour guide through a life we didn’t know or understand just yet with this joyous, infectious smile.


Those words of “suspected autism spectrum disorder” prepared me more than I knew a year later for your official diagnosis. Somehow I felt lucky that we had had this glimpse into our future and a years worth of education.


So back to the question “when did I know?”


Well in the thick of parenting you in your baby and toddler years I simply didn’t know what autism was. It’s only been through the life lived and education after your diagnosis that I now know. You were (and are) indeed uniquely different, and maybe that difference has an actual name.

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I love you baby girl.
Mom

I Blinked

Dear Addie,

I feel like as soon as I get used to a new behavior and see it’s repitiveness - I blink and it changes.

Oh the joys of Autism. Predictably unpredictable - always. Don’t get to comfy, because it’ll change.

I remember when you use to love elephants. I mean really love them! We were “all in” and jumped right on board! Shirts with cute elephant decals, jammies, blankets, books...you now own what seems like a whole stuffed herd that could put FAO Swartz to shame! They used to live a great life of being placed strategically around your room, often times interacting in some fisher price little people scenario.

Now...

Well, they’ve all been officially banished to bins in your closet. Not sure what they did, but it must’ve been serious!

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Likes, dislikes, and behaviors they can all change with a snap of our fingers.

And it’s not always toys!

We went from swinging, to climbing, to escaping in what seems like the blink of an eye.

While so much can change without warning, routine is crucial for all of our sanity. Especially with your new found role model - Harry Houdini.

So after a long, exhausting week of researching, talking to contractors, taking on a new job as security detail for you as if you’re Beyoncé, and ordering products to keep you in our house and yard, due to your new found love of leaving on your own terms - it was important for us to stick to our “normal” routine and continue to take you out.

Seems like an oxymoron right?! Trying to keep you in, but the importance of taking you out.

Addie, here’s the deal, going out can be difficult to say the least, but every single outing (guess I should stress with an adult), whether it’s the first, or the 100th time we’ve gone somewhere is an opportunity to continue developing social norms within our community. Just for the record, jumping fences and freely walking through homes per last week’s letter is not the social norms I’m talking about, unless you wanna wind up in jail someday.

Remember the “exposure is key” advice?! I have a love/hate relationship with this, but that’s besides the point. Going out and about is a way to help you plain and simple.

It’s during these routine outings that we (and sometimes others) can really see the growth and progress you’ve made.

Having said all that, it was Sunday, we were headed out, and it was time for church.

We tend to sit in the lobby during mass because, well, you sit as still as a mexican jumping bean and your stimming is often accompanied by a rather loud, uncontrollable sound. You know who else sits out there? Every baby that starts fussing. As parents we’ve all been there. This however hasn’t always been your favorite part of the lobby. I can still remember when you would scream bloody murder when a baby would whimper, giggle, or worse...cry! God forbid! Instead of myself swooning over the sight of an adorable bundle of joy, that surely would’ve given me baby fever, I suddenly found myself avoiding them at all cost only seeing them as sensory assaults to you and looking for our nearest escape route. But somewhere along the line we blinked and it got better.

Your patience can usually only take so much, so mommy and daddy used to have to take turns heading outside (rain or shine) to walk with you, blinked again and now you can stay the whole mass. *Although you do enjoy a few too many trips to the restroom - apparently washing hands is awesome :)

It’s these moments that I remember so vividly thinking - is this just how it’s always going to be? And if I’m being honest - feeling quite sad, because these times were truly stressful.

Now, for our usual church outing we would arm ourselves with a giant bag of tricks, loaded with snacks, drinks, toys and activities and let us not forget the headphones that you yourself have a love/hate relationship with. Yep, pretty much looks like we are moving in with all of our “stuff” just to do something relatively easy as going to church.

Having gotten your anxiety in a somewhat manageable position, we have been slowly pairing down our distraction activities. So for today’s routine church service, we went for the gusto on a learning opportunity in patience and focus (kinda gutsy) and took nothing but one drink, a pull up and a prayer - we were in church after all ;).

We found our usual lobby spot, and you sat immediately stimming and rocking back and forth. You were repeatedly yelling “black kettle, purple star, green bug!” Addie, I have no idea why you were mentioning these particular items and I’m sure others were just as perplexed seeing as you lack any sort of whispering abilities when it’s necessary.

You stood when we stood, knelt down when necessary, even gave peace to fellow parishioners!

We blinked.

There was no screaming, crying, asking for snacks - you were just there, with us.

Dare we try to blink again...brunch?

You know what Addie, not only are these outings sometimes challenging and good for you - it’s good for me too. I carry a heavy weight of social anxieties and I can greatly benefit from this practice as well.

With a few deep breaths we were off to a familiar brunch spot for us, The Bass Lake Draft House.

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Now, yes, we’ve been here before and have had our fair share of meltdowns. But not today.

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Today with the patience and kindness of this restaurant, we blinked.

On this day, a very friendly regular waitress approached us and asked if there was anything they could keep on hand that may perhaps help you or others with autism enjoy their meal and stay a little more feeling less stressed.

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Addie my heart almost exploded with happiness! How kind and amazing was that! They themselves have blinked on our presence and were eager to help others!

While we are navigating our next set of challenges, I will keep reminding myself that one day we will blink and look back at this as a “remember when.”

I know this next chapter is going to be challenging, but one day it’ll be just another chapter.

Love,

Mom

One Second

Dear Addie,

While we've been making great strides recently, I promised to be truthful in telling you any and everything about our journey, even if that means the risk of negative judgment thrown my way because of my parenting skills. I hope in my heart that people won’t be quick to judge, because it's super easy to think how you would handle a situation until actually being faced with it, so here it is...

I turned away for what seemed like a second. And you were gone. While scenes like this have played out in my dreams (nightmares), this was no dream. This was for real.

One second before, you were on the deck - sitting happily drinking your gatorade, and laughing with your infectious giggle. Then, gone. No where in sight. I asked Clara and Gabe if you went upstairs - hoping and praying, but their answer of ”I'm not sure” somehow left a sickening feeling in my stomach. I just knew.

I sent them out back to look under the deck, on the side of the house, and behind the trees, and I ran upstairs - just to be sure. Before my foot even hit the first step, my phone rang. It was our friend and neighbor. Not our next door neighbor, or our neighbor across the street. No, the call was from our neighbor around the corner and down the street - and far too close to our neighborhood pool, and the woods. The pool for reference is surrounded by the same fence you just jumped to get out of our yard a second ago.

There was a calm, yet shakiness in her voice as she told me she had you in her backyard. My heart immediately sank deep into my stomach, and I wanted to throw up. I could tell she was trying her best to remain calm, but she knew in her heart this was not good, and surely was the beginning of something we weren’t ready for.

You are by definition officially a wanderer. Wandering, or as some call it “elopement”, is an all too real problem in our autism community.

Addie, we use to pride ourselves on our fort knox style security, but you're getting bigger, stronger, and are equipped with amazing problem solving skills for getting your needs met without language or help from others. I think it’s safe to say we were about to be put to the ultimate test on safety, and no joke this could be life or...I can't even utter the words.

Some would say we need to teach and be stern with you about what's right and wrong or even the severity and danger of such events. I'm here to tell you, it's not that simple. You jumped our fence, walked through our next door neighbor's yard, into their screened in porch, through their house...LITERALLY WALKED IN LIKE YOU OWNED IT, went straight to the front door, unlocked the deadbolt and out their front door, and continued walking down the street.

I can’t even imagine what our neighbor was possibly thinking. God bless him. Surely you startled him with your unexpected presence in his home. He tried talking and redirecting you with no such luck. You were on a one-track mind to get somewhere, and unfortunately, to you he was just white noise.

Addie there are no words to describe how grateful we are that A.) he was home! B.) he clearly knew something was wrong here, and C.) he followed you, tracking you until you reached your next destination, where our number was on speed dial.

It's pretty safe to say my anxiety has been thrusted into high gear.

Honestly my mind is still racing from all the ”what-ifs”, and while by the grace of God (I'm pretty sure He put people who knew you in your path that day) all ended well, it has blown open the doors to the next very scary chapter on this journey. Not a settling feeling.

The endless research begins yet again. Safety. Period. Alarms, gates, locks, fences. You make all this seem elementary.

In case you were wondering, there is no chapter in any parenting book that can adequately prepare you for the wandering child, or researching different GPS tracking devices for your sensory seeking, minimally verbal child. Yes, you, the same child who at 3 years old chewed the clasp off of your stainless steel identification bracelet to get it off because it was clearly bothering you.

So where do we start in this chapter?

I haven't felt prepared for so much of what this journey has thrown our way, but this really has me feeling amiss. Other than refusing to blink, for fear of missing a move you may make, I decided to start with awareness of the situation at hand.

This week I began the process of registering you with our local police department. An experience that brought equal parts a small sigh of relief, and sadness at the potential necessity of it all.

I sat that night at dinner thinking to myself how many mothers or fathers have thought ”Ill be right back...” as they answer a phone call, use the restroom, or help another sibling with something? Do they ever think in a millions years that their child would simply vanish in their absence? This is our new reality.

So many things just keep swirling around in my head.

You wanna know something Ad? I’ve never been drawn to live in a neighborhood. It's true. I admit I very much have my own social anxieties that come right along with that statement, and I always thought you'd be safer, or life would just be easier (for whatever that's worth) somewhere far away from the congestion of the typical neighborhood.

Daddy felt differently and found safety for us in numbers. Addie, daddy was right.

Kind of a funny thing that what's right doesn't always feel right...remember these letters were originally inspired by an incident with some of those ”numbers” making fun of you at the pool that one day. I wanted to move right then, but clearly that was me being emotional and dramatic. Thinking back on that now, and if this would've happened out in the middle of nowhere on our dream, county estate with all the land, the ending could've been drastically different.

I'll say it again, daddy was right. Baby girl, this week was one I didn't want to believe would ever happen on our journey. I wish this week’s letter was cute, and would maybe get a million hits on YouTube for some silly kid stuff, like a mom leaving to use the restroom only to come back to her house resembling a snow globe with flour her child had happily tossed about.

Nope. It wasn't cute, or funny, or even YouTube worthy - you were gone. And it scared the hell out of me. It still does.

Addie I'm scared, tired, and have literally been waiting to use the bathroom until you’re asleep at night now. Working up to get that bladder of steel!

We’re gonna figure this out baby girl. I promise.

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Love,

Mom

A Birthday Celebration

Dear Addie,

This week we celebrated your amazing big brother Gabe’s 11th birthday! I still cant believe he's 11 - where has the time gone?

Now I know I've written to you about, well...just about everyone's birthday in our family, so you're probably thinking, seriously mom, there can’t really be anything new here. Right?!

But here's the thing, you may have noticed now that birthdays come every year and our family being a party of 5 means we get to celebrate quite a bit. Lucky us!

Now with you being predictably reclusive to the whole overwhelming birthday charade, we’ve been surprised the last year or two that ironically the somewhat predictability of these special birthday events has brought us moments where we can see marked progress in your journey. Progress on a number of different things have been quite difficult dealing with in the past.

For instance tolerating an excessive amount of people in a space than you’re normally comfortable with. Being OK with (or dare I say even playing with) a balloon residing in the same room with you, or God forbid someone sniffling from these dreadful North Carolina allergies and needing a tissue! Anyone who knows you knows your mind is set that tissues are the devils work!

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When you have sensory & social challenges the list could go on and on on how something as simple as a birthday party could make for a very frustrating, anxiety ridden day, rather than one to celebrate. But I'm happy to report that marked progress has most definitely been seen over time in all these areas! Kudos my love.

Now with big brother Gabe turning 11 we thought a small gathering - with a very few close friends on his actual birthday would be fun! (Lord knows I struggle with getting a traditional birthday party with friends, invites and goodie bags organized and executed on or near actual birthdays - the struggle is real.)

Let me tell you there are many things that make Gabe awesome, but his love and relationship with you is truly a beautiful sight to witness. As much as he’d want his friends with him to celebrate, he wants you there too.

You see Ad, even in your nonverbal years, and heck even now when language can be somewhat challenging, he gets you on a level not only a big brother would understand, but a best friend would as well.

He's always thinking of new ways to get you to laugh (the deep belly laugh kind of happy) and is eager to share your accomplishments or any autism information he may have come across with others.

He's super proud of you.

Most recently he discovered that the person who holds the world record for solving a rubik cube has autism! He thought this was pretty awesome because it was very much a hybrid of both you and him. With his love and insane talent of solving rubik cubes, and your autism - I'm pretty sure he’ll be trying to teach you in no time, so fair warning my dear.

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So with your rubik cube loving, big brother Gabe’s birthday here, we were excited to celebrate and see what new progress you would bring along with you.

Now Addie, with all the positive improvements we’ve seen, its important to keep in mind this didn't come without a lot of hard work and dedication from you. We see this, recognize this, and are amazingly proud of all you have done and continue to do. We’re seeing progress everyday and have seen notable difference in many aspects of our day to day functions and in family activities. Now don't get me wrong, we still have our fair share of bad days. Sensory meltdowns or tantrums (yes, tantrums) are still part of this journey whether we like it or not. In fact, just an hour before this small birthday gathering was to start, you had an epic episode that resulting in a much needed ”cool down” walk around the block. Not gonna lie, after this I was a little worried for how the rest of our evening was going to go.

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Luck seemed to be on our side and after a walk, all was right in your world again. Phew!

Guests arrived and it didn't take long for birthday-fun-chaos to commence.

For those who have never been to our house - it’s loud. Always. Instead of shying away from the chaos - you happily jumped right in and I mean literally, jumping and stimming nonstop throughout the night.

You played with the big kids, shared your swing & new fort, even played with baby Austin - who in my mind has definitely proven to be your baby muse! ...but that's a whole other blog ;)

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At one point I realized I wasn't tip toeing around your next move and there was just a sense of calm. It was Gabe’s day and that's where our focus was. You were happy and not irritated, even engaging in your own way with our guests.

When it came time for cake, you promptly got up to shut off all the lights as daddy lit the candles, quickly finding your seat back next to Gabe because surely he’d need your assistance blowing out his candles. Not to mention your little finger needed to take a swipe at the frosting - you know... to ensure it was safe for everyone to eat ;)

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So this weekend we celebrated Gabe and you were happily part of his special day. This meant a great deal to all of us, but was really extra special for your big brother who adores you so much.

Great job Ad.

Love,

Mom

I Want More

Dear Addie,

Do you remember the book, “If you give a mouse a cookie...”? You know, the one where he goes on to need milk, and a straw, then more, and more, and more?

I feel very much like the mouse on this journey. Yes I feel like the mouse.

Sounds kinda silly right?! But here's why...

I often here parents say (and I too have said this before) “I wish I could slow down time.” It’s a way of saying that we feel that our children are growing up too fast. It’s funny when I think about that phrase now, and where we are in our life.

I kind of feel like for us, it’s a little backwards. While we certainly cherish the moments and milestones, and know we’ll look back someday and think how fast everything went, I often think about wanting things to move along a little faster so we can see what’s next! Crazy right?!

I still remember the first time the nonverbal version of you took my hand and showed me that you wanted a sippy cup of milk. You were guiding me in your world, communicating in a way I wasn't accustom to, but communicating nevertheless. The excitement was overwhelming and indescribable. It was like I had just won the lotto, and very much left me wanting more.

You're a big 2nd grader now. You go to school 5 days a week, can find your classroom all on your own, have reading, writing, and math homework even! You're doing an amazing job, but I find myself wanting more. I still long for the “How was your day at school?” conversation, where you’ll tell me who snorted milk out of their nose from laughing to hard at lunch. Heck I’d even take “It was fine.”

We’ll get there one day. More will come.

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The past few weeks you have been more present with us. Spending less time alone, and more time not necessarily overly engaged, but “with us.”

These moments have spoiled me for once again wanting more.

As you sit on a stool in the kitchen watching me cook I want to hear your input on what to buy your big brother for his birthday? Where you would like to go on vacation? What we should or shouldn't eat for dinner?! Of course these things aren’t said. I know I should be content to have you choose to sit by me, but I want more.

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You were spending time with us, not screaming or crying just observing and being present. It's no secret we’ve had our fair share of troubling months, and now that we finally have a sense of calm (other than you finding any and everything you can to climb on) it’s funny, but I want more.

You gave me this delicious cookie of a moment, but now all I could think of was that I wanted some milk. I mean the cookie is good, but I want more.

Why do I want the milk so badly? Why can't I shake this feeling of wanting more and more and more? This is starting to bring on some serious mom guilt for me. No joke!

Some say I should appreciate the small triumphs and moments in life, and I do. I really do, but... I want more.

I still get misty eyed everytime I think back to your 5yr old self drinking from a cup for the first time ever at the Mason Jar Tavern.

That was almost 3 years ago, and I still can feel every emotion of that moment!

Am I just being greedy to want more from and for you?

I recently learned that there's a reason for feeling all this way, and it's not greed (phew!), but a form of happiness.

A professor from Cornell University named Thomas Gilovich has done numerous studies on what brings us the most meaningful happiness.

His conclusion? Happiness is derived from experiences, not things.

You might think, what does that mean?

A lot of things bring us happiness, but it's the experiences that give us the most lasting, and meaningful kind.

For example...mommy and daddy may be really excited to buy a new dining room table. We’ll save up for months and finally purchase the perfect one. We’ll show it off to who ever comes over, and feel happiness from our purchase.

Time goes on, and inevitably the excitement wears off. We remember less about how we felt looking for, saving up, and purchasing the table, but more about the experiences that we’ve shared around it.

The feeling of happiness we had when we purchased the table ended up being temporary, but the experiences that came from having it will stay with us forever. The laughter, the tears, the stories - all that is what we will remember.

It's not only the experience that brings so much happiness, but also the anticipation of the experience - or the ”wanting more” that also is proven to provide great lasting joy.

The ”anticipation” on this journey definitely comes with a healthy dose of patience. If something amazing happens, we build ourselves up for the next great thing, wanting more and more, but that might be weeks, months, or even years from now. We just don’t know. We will find happiness in the wait, because we know that one day the ”more” will come.

So in other words, we’ll gladly keep taking the cookies, but that glass of milk may still be roaming in a pasture somewhere (in a cow!).

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So my dear, on a journey that can make us feel a whirlwind of emotions, sometimes daily, it’s these cookies you give us that bring so much happiness, and leave us the lasting joy of wanting more.

Love,

Mom

The Trade

Dear Addie,

Part of adding new players to our team requires very in depth discussions of where we have been and where we should go from here. Where should we begin? ...again.

It didn’t take us long to find ourselves on the same page thinking your anxiety might be the perfect place to start.

You see baby girl, your hypersensitive auditory system has been a relentless enemy for as long as we can remember. Unpredictable sounds in unfamiliar places. Anticipation of auditory assaults not only outside of our home, but also present in what is to be your safe space of our home. All this resorting to and struggling with uncomfortable headphones just to go to the store, church, or drive to school...seemingly effortless tasks for most. The wrong sound or anticipation of such could result in fight or flight in a matter of just seconds.

It’s all so much for your young self to manage, and a real heart breaking struggle (to say the least) for us, as your family, to try and help you with.

Your reclusiveness to your room was becoming more and more. This being one of the few places you could find control of your anxiety and fear. It is here that predictability is present for you.

We felt that “exposure is key” advice growing not only even more difficult than it already was to execute, but the realistic possibility of carrying it out slowly slipping away.

Yep, we’d like to start there, anxiety.

Like I had mentioned before, every new step also involves a waiting period to see if this new step is in the right direction.

While I’m happy to report we’ve made marked positive progress in the right direction relating to your anxiety - we may have fallen into a vicious cycle of trading “this for that.”

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Allow me to explain.

At roughly 18 months old we received your first diagnosis of sensory processing disorder or SPD for short. This involved many aspects not only from basic auditory or tactile senses but also proprioceptive and vestibular senses. Those big fancy words are all in relation to your body’s ability to move through your environment effectively and stay balanced.

You my dear are hypersensitive with your auditory senses and just about everything else - hyposensitive, meaning you need more and more and will continuously seek it out until the need is met.

Proprioceptive is related to anything with pressure to your muscles and joints, so things like squeezing, hanging, climbing, and jumping, all of these meet this need.

Vestibular involves anything with movement, like spinning, swinging, or climbing something high - really high in your case.

With your anxiety beginning to be more manageable, you emerged from your reclusion of your room and your exploration and sensory seeking have gone into overdrive!

Insert Addie “Evel Knievel” Menzo!

That’s right Addie, You seem to have graciously passed your anxiety on to us as we struggle to stay a few steps ahead of you and your love of death defying heights attempting to get the sensory needs met.

You are a climber, which makes things extra fun around here these days. *Insert a healthy dose of sarcasm in that last statement.

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“Addie proofing” our house is exhausting and requires a great deal of creativity to accomplish any of it.

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I miss the days of “baby proofing” our houses when each of you were young. Looking back that seemed so easy and uncomplicated to where we are at now. Door locks, outlet covers, baby gates - ah yes, the simple stuff. It all seems so elementary for you at this point.

We need something more along the lines of trapeze netting and 12 in gymnastic mats everywhere in our house to keep you safe! Oh how I wish that was actually an acceptable or realistic option.

Maybe move a 12th time? Perhaps we just need a sprawling ranch sans window sills? Ha! But who am I kidding you’d surely find your way to the roof in no time.

So with anxiety at bay for you, operation keep sensory seeking Addie safe has begun for the rest of us.

The past week or two has been filled with researching and creatively modifying our house on a nightly basis. That’s 1000% not even an exaggeration!

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Balcony banisters have been adjusted to make them higher,

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window guards have been put in your windows to keep you from standing and perching there and we even set up scaffolding in your room to create a safe climbing structure that doubles as a sensory friendly fort.

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With your lack of fear, add in an abnormally high pain tolerance equals mamas heart skipping a beat far to frequently for my comfort!

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So while we may have traded anxiety induced screaming and fight or flight for dare devil stunts, I’m hoping (& praying) this is just a surge in new excitement of living with less anxiety.

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If there’s one thing I have been enjoying (other than “less” screaming) your proprioceptive senses have been seeking extra cuddly squeezes from mama :)

I love you baby girl!

Love,

Mom

One Day

Dear Addie,

This week it was all about our One Team, One Dream family motto, and while we were supporting those within our autism community this was only indirectly about you my dear.

Allow me to explain.

It started with our beloved autism camp, Camp Bluebird, which is part of 3 Bluebird’s Farm in Holly Springs, NC. Not only do they host an amazing summer camp for you (even track-out camps for others), but they are also home to a group called the “Take Flight Club” consisting of teens with autism. This particular group gives autistic teens opportunities to get together in different settings, not only to have fun as friends or give back to our community, but also to work on those all important social skills that so many individuals with autism struggle with. Remember that whole ”exposure is key” advice ;)? Well that's lifelong advice for this journey.

Now you might be thinking, what does a teen autism group have to do with you at 8 years old? The answer is nothing... yet.

You see Ad, you may one day be part of this amazing group. Traveling within our community making friends, having fun, working on your social skills - surely stealing hearts with your infectious smile, and while you’re not there yet, others are. Which brings me to our family and how we ended up with this amazing group of teens and spending time with them over the weekend.

Now it's easy to identify you as the the MVP of our journey, but the fact remains we are one team and are all walking this path together. The special needs community is now woven into all of us. Whether we are directly affected or not, our hearts will always be ever present here. So when we heard that volunteers were needed to assist 3 Bluebird’s Farm Take Flight Club with an event at the Windsor Point Retirement Community - we didn’t hesitate to offer our help with whatever was needed!

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Now seeing you were too young to join this time, you stayed back for a little daddy/Addie day, while Clara, Gabe and I went ahead to help out.

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Eager and ready to help, we wasted no time jumping straight to work! (But seriously it was hardly work and more fun than anything else). We assisted in making flower arrangements for everyone,

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and supported take flight members in delivering flowers & sugar-free candy to the residents while working on proper social greetings and even making some small conversation.

You know what Ad, they did awesome!

This my dear was truly an amazing amazing day and we even made a few new friends in the retirement community that we have already been back to see!

So how is this about you my sweets?

Well...

One day (far too soon) you will be a teenager.

One day this may be exposure you will greatly benefit from.

One day there may be another mother of a young son or daughter with autism volunteering her time. She may show up with her anxiety and fear hidden behind a smile of the uncertain future for her child that seems to come with the territory of this journey. One day that mother may be just as excited as I was that this opportunity exists and hopeful at the potential progress her child will make after watching how amazing all these young adults did.

One day Ad, one day.

For places like 3 Bluebird's Farm we and so many others are forever grateful not only for everything they do - from education, to fighting for the future of our autism community, but also for giving us the opportunity to help out and gain a glimpse of what ”one day” might look like for us.

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One day Ad, one day.

Love,

Mom

Two Sips Forward, One Step Back

Dear Addie,

Here we are, same journey just reading a new playbook.

With every new change it’s hard not to hold our breath while we sit just waiting to see, good or even bad, what will come of it. An all to familiar place for us.

Well, much to our delight Addie, we didn’t have to wait long! We saw noticeable changes this week with your anxiety and behavior moving in a very positive direction! Way sooner than we or anyone else had expected.

While I’m confident stimming, consistent movements and random sounds will always be part of your makeup, the anxiety we’d grown so accustom to was noticeably diminishing, leaving us all (including you) breathing a much needed sigh of relief.

With this new demeanor we thought no better time than now to jump into working through some sensory anxieties. And what better place to start than the common social outings of Sunday church, and perhaps lunch at a restaurant - we got this!

Here’s the thing Ad, there’s a laundry list of things I’ve learned from this journey, but one very important thing being that everything we do has an opportunity for growth and learning. There’s education all around!

With that in mind, it was time for our first outing of the day - church. We took headphones, a pull-up, but no bag of tricks for distraction. No snacks, no flash cards, no fidget spinners, nothing. I’d be lying if I said that even I had to take a deep breath for this one.

Today we were determined to begin working through sensory distresses (if they arose) and really focus on taking in your surroundings. Feeling less anxiety, our hope was for you to see this was a place of comfort and peace, not the house of sensory assaults your anxiety had lead you to believe.

We sat in the lobby, as we normally do and you stimmed, flapped, jumped as usual - only this time you also took notice and sat, stood and kneeled with the rest of us as well.

You only requested the potty three times (you're smart and knew this would require a walk and change of scenery), and still gave a solid attempt at splashing in the baptismal font on your way by during your Communion blessing. Avoiding the temptation of what looks like a pool in the middle of church is crazy tough!

For our first outing sans bag of tricks, this was a great success! Our next thought...let’s keep this momentum going!

Lunch anyone?!

After a quick trip to see dads new office downtown, we headed back uptown to our favorite local pizza place. A place we had been frequenting since you were in my tummy :).

It’s here that they know us well, kind of our own version of “Cheers” only it’s in Apex, not Boston and it’s a pizzeria not a bar, but you get the point.

Not wanting to push our luck to much, I put a few pink squares (strawberry starburst) in my pockets and grabbed a “white drink” or ice punch Gatorade (your favorite) to bring along.

We sat down and wasted no time in placing our order. With the day going so well we thought we’d try our luck once again and order you a drink with a straw. A straw? Luck? Sounds weird right?!? Well, using a straw isn’t exactly a concept you’d grasped up until now. In fact, we were just talking about adding it to your list of OT goals.

It didn’t take long before our whole table was pursing their lips, sucking up air, and trying to show you how to use a straw! One team, one dream - and we may have looked (& sounded) ridiculous.

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Our ridiculousness paid off when you wrapped your lips around the straw and giggling and bouncing somehow sucked air in enough to get a little drink too. One up! You had a look on your face like “what just happened?!” We all cheered with excitement!

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Pleased with your new found skill you went back in for a few more sips before abandoning it for the remainder of our lunch.

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Even the simplest of new skills can be exciting, but exhausting all in the same breath.

With all of our excitement it was hard not to take notice of our table to which one 20 something year old and her family did. Only taking notice in not our excitement of your new found skill and our amazing day of progress, nope, but the fact you had slipped your shoes off and she made her disgust of such quite known.

It was then I was reminded that with all the education and advocacy out there, it will never reach everyone. They will never know how hard just going out to eat as a family is for us. How hard and long it has taken to get you to use a straw. How excited we were with this new skill.

My initial feelings were anger, then hurt and sadness, but then I remembered we just had an amazing day and I couldn’t let this judgmental person ruin this for our family. Nope.

Addie, we were so unbelievably proud of you this week. You are doing an amazing job! Keep it up!

Love you!

Mom

The Quarterback

Dear Addie,

The time had come. It was time to meet our new quarterback. Although you had no idea where we were going, you seemed to find enjoyment in driving along on a day date with mommy and daddy. Surely your mind was swirling with plenty of fun possibilities of what today would hold! Mommy and daddy were excited too after all, so maybe our mood was infectious.

We had arrived at our destination and almost on cue your demeanor started to change. Just the sight of what appeared to be medical buildings lead the anxiety to creep in. There’s no fooling you, you’re super smart Addie. I slipped your headphones on and you knew, nope, we officially weren’t going to the park to swing and eat “banella” (vanilla) ice cream! At this point you were probably thinking “I’ve been duped! Flag on the play! Where’s the penalty?!”

Headphones on, dad's hand in yours, mom holding our bag of tricks and an encyclopedia of paperwork - we entered the building...

One step in, and you completely froze. Your shoulders shot up to you ears, readjusting your headphones, and you began to shake. You didn’t run or scream, you just stood shaking like a stiff leaf.

With reassurance from mom and dad that it was OK, we were able to move closer to the elevator. As the elevator doors opened you were still unsure, you bent forward leaning your head in first to ensure there were no hidden surprises of distress before entering.

You clung tight to daddy and up we went. Lucky for us it was only one floor.

The doors opened and daddy whisked you off to a small corner of the waiting room where some books and small toys were located. You ditched your jacket and headphones almost immediately before snuggling in close to dad to read a book as I checked us in.

All was going well until your name was called and right on cue you began to cry. Crying in such a way to let us know that you were not pleased with whatever was about to happen, but also not fighting us on moving forward because you were still very unclear about where we even were.

With our triage of the standard height, weight, blood pressure yada yada completed, we were ushered into a room where you took one look at your surroundings and the crying ensued only a little louder.

You see Ad, you have a love/hate relationship with the typical doctors office medical tables. You know, the ones covered in paper?! The paper is crunchy and ever so fun, but if you have to sit on it, that means the doctor is going to invade your personal space, and let’s be honest there’s still very few people that you’ll even give a hug to because it’s invasive to you these days. A lot of autistic individuals feel threatened if their personal space is invaded, but on the flip side, think nothing of being a space invader themselves.

So safely sitting between mom and dad (in chairs) the doctor gave a soft knock and slowly opened the door. He emerged in an almost delicate manner smiling and gently (in a very none startling way) grabbed a chair before sitting down on our level to introduce himself.

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His approach couldn’t have been more perfect for you! Clearly this was not his first rodeo. Your demeanor started to relax. You didn’t seem to be feeling threatened or teetering on the edge of fight or flight.

This seemed to be going quite well already!

Now, I need to back up just a bit for this next part. Prior to our quarterback visit, I had filled out and faxed over 30 pages of medical history and recent evaluations to the office. Yes, 30 pages! Starting from my pregnancy with you until present day.

Side note: I’ve been to my fair share of doctors who I’ve done similar due diligence for and it seems when they’ve walked into the room that they only spent the last 30 seconds before seeing us looking at anything!

Now back to the visit.

The doctor introduced himself and started by saying “before we get started, let me tell you what I know about Addie - would that be ok?”

I remember thinking - ummmmm OK?!

He proceeded to rattle off, in great detail, without looking at a single piece of paper your entire history. My mouth may have dropped. I knew right then we were in good hands.

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As the appointment went on you eventually mustered up enough courage to give a few solid attempts back and forth of sitting on that crunchy paper table all on your own before actually doing so. With this act alone and the amazing conversation of our new potential game plan, we were feeling even more optimistic that we were on our way to finding relief for you (and us)!

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We left that day feeling as if we had just drafted Drew Brees to our team and we were equally excited about our new game plan!

Let’s do this Ad!

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Love,

Mom

Guiding Light

Dear Addie,

So there we were. Dad and I sitting next to each other, holding hands as I was telling the story of you aloud. Across from dad was a young woman eagerly taking notes, and across from me was a woman that we were so anxious to meet. A woman we’ve affectionately been referring to as the beacon. That’s right my love, we were actually meeting with her and sharing our story.

I was practically shaking with excitement feeling very optimistic, but anxious and nervous all in the same breath.

I wonder if she knew how much our “complicated case” needed her.

After some brief introductions, her simple words “how can I help you?” nearly sent my waterworks into action (seriously mama we just got here! Get it together!) As I sat clutching a folder thick with countless evaluations and test results, ready to share if asked, daddy began to speak of the roadblock we’d seemed to stumble upon recently, and our need for fresh eyes and guidance on our journey.

You see Ad, when we are in the thick of some of the harder parts of Autism (the behavioral issues & developmental delays etc.) it’s hard to take a break or a step back and look at the big picture. Everything we do from therapy, medication, techniques and the like, they all take time - 30 days, 6 weeks, 6 months, everything has a time in which you ”should” see improvements.

There are days when you question yourself - whether sticking it out on these timelines are worth it. You always try to stay optimistic. Then there's the defeat when you've made it to the suggested finish line and nothing’s changed or worse - regression sets in…

Anyway, back to the meeting. She asked us to walk through your story. The WHOLE story – from pregnancy all the way through present day. Complications, milestone, lack of milestones, evaluations, any diagnosis’, therapies, medications - all of it. Little known fact about mommy, I've filled out so many sets of paperwork involving history reports that I have your life memorized. For real baby.

This was my cue.

As I rattled off your history from NC, to NY, to TX and back here to NC again, I officially started to cry. We had been so many places in your young 8 years seeking advice from so many people - yet here I was. Completely broken. She was quick to hand me a box of tissues with a soft, sympathetic look. Somehow I felt like I wasn't the first mama in her office crying.

As I gathered myself together, she began to give us her thoughts. She was professional, careful with her words about our path traveled and decisions we’ve made along the way so far, all while staying compassionate in her response.

She agreed a clean slate evaluation would be best, and had a new quarterback in mind already tailor fit for our family and most importantly – for you. As simple as it sounds, this basic and sage guidance already made dad and I start to feel encouraged.

“Yes, a new quarterback…” I could see the wheels turning in dad’s head – but then needed to remind him that we were talking about you, not the Lions…

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We were on our way baby.

Love,

Mom

The Beacon (Part 2)

Dear Addie,

Now where was I? Oh yes, we had just left the doctor’s office with a piece of paper that he gave us. On the piece of paper was the name of another professional that he said would be a “beacon” for us if there was any way to get in to see her, which was going to be quite a trick since she was no longer seeing patients.

So, as we walked to the car I had a massive swirl of emotions – on one hand, I felt excitement that there was a glimmer of hope that there was someone who our current “quarterback” felt could help guide us, and yet on the other, I felt guarded against that hope because there was so much risk that we wouldn’t ever get to meet her, and even if we did, would she really be able to provide us with any new guidance?

We sat in the car. Choking back tears I called daddy to tell him how it all went.

*** Side note: if you haven’t figured it out yet I’m emotional, I cry a lot, especially when it involves my children, I'm tired and frustrated.

Ok, back to the call.

I was excited to tell dad that the doctor had a new recommendation of someone we should try and see – a “beacon” as she was described. But getting to see this person was going to be no easy task, as she wasn’t seeing patients anymore, and as one of the world’s leading researchers in the area of Autism and Developmental Delays, she is nearly impossible to get an appointment even if she was.

As I was rehashing the story to dad, hearing my own words, I began to get more and more discouraged, and by the end I was crying (again… my goodness momma – get it together!). I didn’t even say her name. I just said it’s not even worth getting our hopes up, because it’s not like we’ll ever get to see her anyway.

Here’s the truth baby girl, you were struggling. Struggling with just being. You were becoming more and more isolated, and having to constantly decompress in your room. We could hear your swing bounce from wall to wall for hours as you tried to ground and comfort yourself. You were struggling at school, acting out like we’ve never seen before. Throwing tantrums (and chairs!), and just really anxious and upset wherever we went.

Why couldn’t I make this better? I wasn’t looking for a magic “fix” (you’re not broken, I didn’t need to fix you), but I just desperately wanted guidance on how to help ease your struggles, help you swim to the surface for some air.

So while I sat broken, and telling daddy how I was feeling, he was in a faraway place having a very different kind of day than we were…

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Hi Ad -

Its dad – you know the guy who makes elephant sounds on command, and chases you around the house playing Frankenstein and tickling you? Yep, that guy.

I know the past several months (years really) have been really tough, and that in your bubble, your mind is working overtime to figure out how to exist in this place that you don’t quite get.

I know it’s tough not to be able to tell us what you want or think, I know you are sad and anxious and frustrated not to feel comfortable in your own skin, and especially the sadness you feel after you lose your shit “shoot” and then feel remorse afterwards. I can’t imagine how it feels to be you, and I am so proud of you for trying to figure it out.

As mom has been telling you in her letters, the past few months have been especially tough, and now that you are a big 8 year old kid, everything seems to be tougher and more intense. So the day that you and mom were at the doctors, I know it was a real disheartening message to hear that there may be an expert who could help guide us in a new direction, only to get discouraged about actually ever getting to meet her.

Well, the story takes a very different twist.

Because it so happened that that very day that you and mom were here in NC at the doctors, I was in New York meeting with some very special people. Let me explain…

You see my love, daddy gets to do something very special for his job. He gets to work for an incredible organization that is full of amazing people who are working hard every day to find cures for blindness. There are thousands of people going blind and we are working super hard to help them. The man who started my organization, who has gone blind himself, also helped support the start of another very special organization called… Autism Speaks. True story.

This special man has been very kind to our family, and knowing our story invited me to a meeting with some of the world’s experts in New York, on the same day that you and mom were at the doctor’s.

So while mom was telling me on the phone how defeated she was feeling, I was biting my tongue with excitement that I had news to share… one of the people I had met with in New York knew a world class expert that happened to be really close to us in North Carolina. “She is just amazing” they said, “She would be such a guide for you – a beacon!” (Ok, truth be told they didn’t use the word beacon, but I am taking creative liberty…). The only problem (you guessed it) is that she wasn’t seeing patients anymore, but they were going to see if she would meet us as a favor.

“Her name is…”

As I told the great news to mom, I wasn’t sure what happened. Did the call drop? There was no response. “Honey? Are you still there?”

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I could hardly speak. Did that really just happen? Dad just said the name I had written on the piece of paper. What just seconds before felt so impossible, was now undoubtedly going to happen. God works in mysterious ways my dear. Really and truly.

The stars aligning, a God wink, unbelievable coincidence, fate? Whatever it was, we were so ready to happily accept this gift of light! I would fall apart a hundred times over for a moment like this. It was as if we had won our own personal lottery.

We were going to meet the beacon…

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I love you.

Mom

“Even a glow stick has to break before it can shine.”

The Beacon (Part 1)

Dear Addie,

A couple months ago I found myself in a doctors office exhausted, frustrated and completely spent. Tears streaming down my face as I sat in front of a doctor intended for you. I think it was safe to say he didn’t see me melting down coming. We all have our moments my love.

It was a regularly scheduled appointment with a very good doctor at that we’ve been seeing for almost 3 years. Our “quarterback” in our journey if you will. A doctor who has seen your ups and downs, and on this day you just happen to be in a manageable mood; accepting of your surroundings and giving minimal push back. A good day in our books.

We were led back into a room, not like a typical doctor’s stark white sterile fluorescent lite setting - no, it was a carpeted, dim small room with toys and a coloring table to help ease your anxieties.

You sat sorting crayons by color, scribbling each one on a piece of paper before it was strategically placed in a row next to the others before it. I sat with the doctor discussing the concerns I had, as my emotions slowly rose to the surface. Next thing you know, I was a full blown water feature. Seemingly unaware of my meltdown, you continued to sort your crayons.

I felt lost.

We had done anything and everything possible in terms of care and treatment, but we were still in complete disarray. Growth spurt? Hormones? Change in schedule from the holidays? Your fight or flight mode was heightened these days, potty training was in complete regression and the screaming was worse than ever. I had no idea what was going on, and quite frankly we needed someone to throw us a lifeline at this point.

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I’m pretty sure this was the point when he looked at me like I was having a nervous breakdown - and I probably was, or at least riding the edge of one. Then he said in the calmest most sincere manner, if we could get into see this one person, she may be our beacon that we so desperately needed. A person he tremendously respected professionally. A set of fresh eyes to our journey.

Only catch (of course there was a catch right?) was that this so called “beacon” was no longer seeing patients. Ah, that almost felt like something there, but then very quickly felt like nothing.

But how did we get to this point?

Addie, this journey no doubt has brought some of the most joyous moments I’ve ever felt. Blessings run wild, but they come with another side that not many talk about.

It’s really, really hard, and there’s no such thing as a rest day. Every single day is a full plate of education for us, learning something drastically different than the day before.

Your struggles are 100% real.

The outward distress of you tensing up, screaming, crying, hitting over a sensory assault of some sort - I can’t even begin to fathom the pain that causes you internally. As a parent it’s heart wrenching and very stressful.

I cry. A lot. Now I’m not a sobbing mess everywhere I go (I can pull myself together), but alone in our home I cry.

I cry because there are so many times when this mama, who like most, would claim they have a PhD in their child knowing any and everything about them, and yet I have exhausted my ideas on how to give you the help you so desperately need. Clearly I’m still working on my post doctorate now.

We’re armed with an extraordinary amount of knowledge (it comes with the territory), but with a spectrum disorder it’s a giant hybrid game of life and chance.

Honestly one of the toughest things we’ve experienced is when doctors say “she’s a complicated case.” This phrase has been uttered by numerous doctors and therapist on a number of occasions over the years. Those we look to for the most guidance. (Side note: this is not an anti-doctor or medical field statement. Even holistic approaches had opposite effects than we expected for you). Now kudos to you for being unique baby girl, but those are probably the last words anyone looking for guidance is hoping to hear.

So there we were leaving the doctors office still “a complicated case” only now with a long shot of our potential beacon seeing us.

Feeling defeated I called daddy, emotional and sobbing. You see that particular day daddy was out of town at a very special meeting that could fit a few important pieces of our puzzle together.

In a million years you would never believe what happened next...

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To be continued.

Love,

Mom

Practice Makes Progress

Dear Addie,

There are hundreds, probably thousands of parenting books out there, but if there's anything I've learned from any number of those books, it's that parenting is a learn as you go journey and truly your very own journey at that.

Parenting a child with a significant amount of sensory distress can seem like you're trying to parent in the most unfamiliar place -- like Mars!  You have an idea of where you need to go, but you can't get your feet firmly planted on the ground long enough to take off in the right direction at any significant pace.

Advice from other parents can be quite helpful, and if I'm being honest there probably isn't anything we haven’t tried via suggestion, but when it comes to autism or sensory processing disorders (you have both), no one child is the same. To manage each sensory distressor can get challenging. Rub an oil here, put your left sock on inside out, put pants on right leg first, eat this not that - we’ll try it all, but at the end of the day the fact remains there's no one size fits all approach here.

Everyday places from school carpool, the grocery store, birthday parties, a doctor office waiting room, to the gas station - yes the gas station (you have separation anxiety as soon as I step out of the car), can be stressful for you to say the least.

Just the thought of taking you somewhere which may cause a sensory assault on your processing system is enough to make me want to resort to being full on introverts and never leave the house! But then there's that whole ”exposure is key” thing. Ugh.

Some days I want to find who blessed us all with this piece of advice for autistic families and say ”seriously - you got anything else, because this exposure thing is for the birds!”

Daddy was out of town this weekend and it was Sunday which meant we would be heading to church. Mark it - mama was adulting solo. There would be no divide and conquer if things went awry, just a bag of tricks, a deep breath and a quick prayer.

Our faith is important to us, and with that comes my relationship with it.  It's a healthy dose of questioning, and yet I depend heavily on it.

There's a sense of peace we enjoy from going to church and sharing fellowship with others, but church is hard on you. There's auditory distress in every room we go in, and headphones only do so much. We don't have a special needs mass at our parish, but they really try to bring home the ”all are welcome” mentality. While we appreciate that sentiment, you stim and make (loud) noises every 25-30 seconds and with your most recent go-to noises sounding much like a tornado siren or howling wolf (not entirely church appropriate), so the lobby where we reside.


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Through much trial and error we've learned if we lay out a number of flashcards on the ground they are a good focal point for you. If you become agitated we will start asking you simple questions about the cards or switch a few out to create distraction. While this has been a blessing, even with this, our time is limited.

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On this day it was crazy loud with crying babies and giggling toddlers - two of your least favorite sounds.

I was just waiting for the shoe to drop and a full blow meltdown to rear its ugly self, triggering my anxiety of people staring at you like an exhibit and the guilt that I've brought you to this place of distress to come bubbling to the surface.

It can be emotionally and physically exhausting not only on you, but all of us.

But this day was different. The shoe never dropped. Predictably unpredictable.

Your flashcards were out, you stood when we stood,

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sat when we sat, and when we kneeled, well, you laid down.

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I'm pretty sure you saw other children much younger and smaller doing such and thought - yep I like their style! I'm positive people didn't think much of the toddlers crashing to the floor, but a giant 8 year old - surely we got a few second glances.

No meltdowns though, so this was a good day indeed!

At about the 45 minute mark, you had had enough. You started gathering your cards and putting them bag in the bag repeating ”a bye byes” louder and louder. We could visible see your body stifffing up where your stimming takes over nonstop and your legs start losing their bending ability - you're like an angry, stiff board. And that's our cue! We’re done here.

We proceeded to gather the rest of our things and head to the van. Once you were buckled in, I could see the relief as you relaxed and took a breath. It was as if you held it together for as long as you could, but you were finally ready to erupt and you knew it!

You know what my dear, I was so unbelievably proud of you this week. This was hard! While we didn't quite get to the finish line, we got pretty darn close and that counts all the same in my book!

Practice makes progress, and from the looks of it we were headed in the right direction.

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Keep it up Ad!

Love,

Mom

365 Opportunities

Dear Addie,

This week we welcomed another new beginning to our journey! That’s right baby girl - It’s 2019! Happy New Year!

With all the excitement of what’s to come, it’s always nice to look back on what was.

We had another amazing year. Filled with familiar endless research on my part - surely I should be a scholar by now? Successes, milestones and struggles all seemingly peppered with lessons along the way.

Between Clara, Gabe and yourself, you all stumbled into some sort of 2018 growth spurt! Clearly I missed the memo here and I’m quite sure I’m on track to be the shortest in the family now. Big sister Clara even has to reach things on high shelves for me these days! Can you believe that?!?! But it’s all good, while I may have missed the growth memo I did however win a new set of fancy luggage! It’s perfectly stored under each of my eyes (insert a healthy dose of sarcasm) - yep we’re all a bit tired.

All joking aside, I feel blessed that I can give so much to you all (even if it means being a little... ok a lot tired)! My family, my friends, my job, I love it all. One day I will be far less needed and relish in taking a mid-afternoon nap, which I will happily do. It’s all good sweet girl, mama's tired it comes with the territory, but I’m happy.

With a new year comes New Year's resolutions. Kind of a big word huh?! Resolutions.

Well, not only is it a big word, but it’s kind of a big thing for a lot of people. In definition it’s a firm decision to do or not to do something. People will put all their eggs in one basket on something to carry through for 365 days. Most often those eggs (or resolutions) look like self-awareness, losing weight, or eating healthy. All great things no doubt! Now fast forward to the end of January and they’ve cheated or somehow failed in their resolution inevitably deciding scrambled eggs taste great and maybe next year it’ll all work out. Num num num num num.

Here’s the thing Ad, wherever your story began, New Year's always seems like a great spot to turn the page for a new chapter. A fresh start, if you will. Hence the resolutions.

I read something the other day that welcomed the new year as 365 new opportunities - I thought that was such a cool way to look at it. Even if you decide to scramble your eggs, forgive yourself and fill your basket again. Give yourself another opportunity to succeed! How often do we remind each other that life is not a competition or race, but your very own journey.

Whatever your resolution may be, take a deep breath every single day and give it your best shot! Who knows it might turn out perfect, but if it doesn’t - don’t give up! Sometimes we fail (we all do, we are human) and doors will close only for new ones to open. Promise. It’s not the end. Try again!

So what do you say we relax this year baby girl?! Let’s find the joy in the 365 opportunities we get. Stress less and maybe sleep a little more ;). I wouldn’t be sad if you decided you were done with diapers either- just sayin'.

Whatever this year holds for you and us, we have 365 opportunities to make it work to truly be what we want.

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Happy New Year Addie!

Bring on 2019!

Love,

Mom