"Life's under no obligation to give us what we expect.”

Motherhood after Infertility and Parenting a child with ASD

It’s been a while…

3 Comments

L,

While this is supposed to be your 15-month letter, you are 2 days shy of 16 months. Oops! Life has been insane though and I have needed some extra time to process everything that has transpired in the last 3 months.

Let me start by telling you just how much I love you. When you wrap your tiny arms around my neck and squeeze me tight, I feel like everything is right in the world. You give the absolute best hugs! The love you have for your puppies, your brother, and your dad and I is insurmountable. The mischievous look you get on your face before you do something you absolutely know you shouldn’t do makes me laugh every time. Your personality is complex but so incredibly amazing. You are a truly remarkable little boy.

When you were 11 months old we noticed a very big and drastic change in your behavior. You were just getting over a very bad case of Hand Foot and Mouth Disease and when you got frustrated, upset, or hurt you would fold your body in half and hit your head on the floor. At first, you didn’t hit your head hard but it progressed fairly quickly and by your 1st birthday your forehead was covered in bruises. You did it so bad at daycare one day that you accidentally slammed your head into the edge of a table because they weren’t serving snack fast enough. The bruise was across your entire forehead. We had hoped that since we were transitioning you off of formula and onto milk that you were having a strong reaction to lactose but turns out that wasn’t the case. Shortly after that, hitting your head once wasn’t enough and it progressed to hitting it repeatedly on any and all surfaces (including cement!). I brought you to 3 different pediatricians within our doctor’s office and they all had varying opinions of this being a behavior problem and nothing more. My mommy gut told me this wasn’t the case… I could see in your eyes that this was not something you could control.

While I worked hard to get second opinions, you started throwing yourself backwards with significant force, clawing at your face, and biting yourself. Your dad and I felt beyond helpless. You constantly wanted to be held but never wanted to snuggle with me (or anyone) and I seriously struggled with missing you even though we were together every day. I felt like I never had a chance to connect with you anymore. All you did was scream, cry, and hurt yourself. I spent so many days and nights crying not knowing what to do. All I wanted was to keep you safe and take away whatever demons were making you so upset all the time. I wanted my sweet, loving, easy going baby back for both our sake.

We have a friend that is a behavior specialist and I reached out to her for advice. After a few conversations she asked if she could come to the house to interact with you a little bit and see if she could easily pick up on anything. She came and saw a few of your quirks and ended up recommending OT and getting a psych eval. What an adventure that all was. I could probably write an entire book on that whole process but long story short; you were diagnosed with Severe Sensory Processing Disorder and Autism Spectrum Disorder on August 20, 2019.

Most people are shocked when their child receives a diagnosis such as this but honestly all I felt was relief. Relief that I wasn’t crazy for fighting so damn hard to have someone actually see you. Relief that there was an “answer” to this. Relief in knowing that this is just a part of who you are and as your parents, we need to figure out how to best help you. We are still on that journey and I assume we will be there for a long time to come but there is finally a plan.

In addition to all of that, it was recommended that you have a nerve study done to see how the significant head banging was impacting your spine. It turns out that every nerve in your neck from C1-T2 were compressed to various degrees. We have been going to the chiropractor twice a week for about 5 weeks now and I can’t wait to do another nerve study to see if the nerves have improved. Your headbanging has decreased so much over the last few weeks and I have every hope that it’s a combination of you aren’t in so much pain and that you’re able to communicate a little better with us now.

You are learning new things every day which is so amazing to witness. You have about 7 words although the only ones you say consistently are “hi,” “bye,” and “Odin.” It’s been a challenge deciphering how you learn as you will only mimic something that you already know how to do/say. Most of the time when we show you how to do something it appears as if you aren’t paying attention; you don’t look at us or watch what we’re doing and you never try and copy the sounds we make but then one day out of the blue you do/say things perfectly. After talking to a few professionals this is a common autistic trait. At least we know now!

You absolutely love playing basketball with G and throwing the tennis ball for Odin and Olive. While you don’t play with toys like a neurotypical child does, I have recently been able to get you to sit down with a toy sorter and you’ve focused and enjoyed putting the shapes in the correct slot. You love playing with strings and cords and knocking down any sort of structure that has been constructed.

You also enjoy helping so much… it really appears that you have this old soul stuck in such a tiny body. You want to do so many things that your itty bitty body cannot accommodate yet. About 4 times a day you want to patrol the backyard and point out all of the dog poop so we can scoop it up. When there is none out there you get all huffy and pace the yard. If you find some while I am not with you, you squat down, point at it, and yell. Your dad and I call it your “poop scream” and you absolutely will not stop until we come and scoop it up. It’s hilarious and I am hoping that once you’re big enough to scoop it yourself I will be able to use that skill to my advantage!

You think helping me cook and stirring pots of soup is amazing and by the time the food is done my arm feels like it is broken from having to hold you the entire time. If we walk away you point to the stove and excitedly scream as if you’re telling me that we MUST stay by the pot. You also almost always try the foods I make even though you spit a good portion of it out. Your favorite foods right now are yogurt, applesauce, peanut butter and Nutella sandwiches, popcorn, watermelon and cheerios.

The next few months are going to be intense. We will be starting all sorts of therapy, continuing your chiropractic appointments, and will have to adjust to an entirely new schedule. Let’s not forget your brother and everything he’s got going on as well. Despite the level of crazy being increased, I am ready. I am so ready to learn every tool possible to make you feel safer and be able to communicate your needs better. I know that this will be a fluid process, making progress and having regressions, but I would move heaven and earth for you baby boy. Never forget that.

At the end of the day, of course, your future is as-of-yet unknown. But based on the little boy who I know is really in there, I’m starting to think it’s still going to be recognizable as the life of a happy, independent, fulfilled adult. Because, despite this diagnosis or maybe because of this diagnosis, you are destined to do wonderful things.

That is to say, my love, your autism is not preventing you from greatness, or success. You are silly, and loving, and clever; you are stubborn, and resilient, and determined. You are capable. You have bright things in your future. We got this, my love. And we’ll figure out how to move forward together.

I love you,

Mommy

3 thoughts on “It’s been a while…

  1. You have an incredible perspective and empathy for your boy–wishing you all the strength you need to meet the challenges of his diagnosis and treatment ❤ XO

  2. That must have been so hard when he would hurt himself and you didn’t know what to do! I am glad that you have a diagnosis and it sounds like the therapy is helping which is great!

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