Tuesday, June 7, 2016

Diagnosis

Today is the day Aaron and I officially became “autism parents”. This morning Sam received a diagnosis of autism spectrum disorder. Under the previous diagnostic criteria it would have been called Asperger’s Syndrome, but that term is no longer officially used. I debated whether to put this out there, but I decided to because I have things to say (shocking, I know…)

I don’t post much of the yucky stuff on social media. I don’t mean to hide it; I just don’t see a reason to put it out there for everyone to see. I’ve realized, though, that only posting the funny things has left a false impression with friends who don’t see us regularly. Those people don’t see the meltdowns, the repetitive behaviors, or the social anxiety. They don’t see the sensory processing issues that cause Sam to end up watching from the sidelines instead of participating in activities. They don’t know about the countless times we have had to say no to things we really wanted to do because Sam needed a quiet day to decompress. Yes, Sam is hilarious and brilliant, but he also has some big, giant struggles that are incredibly overwhelming for our little family. We laugh often. We have a great time together. But most nights we all three go to bed exhausted, frustrated, and wondering if tomorrow is going to be any easier.

This diagnosis changes nothing and it changes everything. It changes nothing because words on a paper don’t magically make Sam struggle less and they don’t make Aaron and I less exhausted. It changes everything because now we know the reason for the struggles. It has a NAME. And we can take that information and move forward proactively. We can get therapy and services that weren’t available to us before those words were on the paper, and hopefully in the near future the struggles and exhaustion will be less. Or at least maybe they’ll be different.

The first question people have asked me today is “How do you feel?”. The answer is FANTASTIC. Sam is Sam. He is still my precocious child who uses every ounce of energy and patience I have by 10:30am every single day. This diagnosis doesn’t change that one bit. It’s just that sometimes on the really bad days I’ve looked at him and I’ve wondered “Am I doing something wrong? Am I not equipped to be the kind of mom you need? Why is every day exactly the same kind of hard? Why are we not making progress?”. It’s not me. It’s autism. Just saying those words lifts a weight from my shoulders and lets me take a deep breath. For nearly five years I have been told what I was doing wrong. I’ve been told my expectations were too high, my discipline was too harsh, I didn’t give him enough structure, I required too much structure, I wasn’t feeding him the right foods, I let him watch too much TV, and – my personal favorite – I needed to give him a sibling so he could learn the world doesn’t revolve around him. I’ve been given condescending head tilts from doctors and I’ve listened to countless bits of advice from well-meaning people who just don’t get it. I’ve read news article after news article after news article. After awhile those things start to get to you. They make you doubt yourself. But today I got VALIDATION. The doctor looked me straight in the eye and said “You are doing an absolutely fantastic job with him. You should be proud of what you have done so far.” And so I am thrilled. And I am ready to do battle for my little man.

Here’s the last thing I want to say…I don’t want to buy anything from you. I don’t want essential oils, or supplements, or exercise routines. I’m not saying those things don’t work – I actually think a lot of them are very beneficial – but let me come to you if I decide I want to explore that option. The fastest way to ensure you will never have me as a customer is to use this moment to pitch your product.

If you have been part of this journey with us so far, from the bottom of my heart, THANK YOU. God has given me so many resources and shoulders to lean on, and I really don’t know how I would have made it without those people. I know that His hand is all over this, and I know that He has already gone before us as we start down this road. He has never failed, and He won’t start now!

4 comments:

  1. Sarah, I am a friend of your parents from waaayy back. I have several friends (younger than me) who are walking this road. I am walking this road with the daughter of a friend right now. I love your post because every word is true and full of hope. God will lead you to the right school, the right program, the right people to help your sweet precious Sam be all he can be. That is what all parents want for their children. I sent your mom a message that I hope she shares with you. From following your mom on Facebook and all she writes about you, I know you are allowing God to be in the middle of all of this. Prayers for you and your family as He leads your way.

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    1. Thank you, Donna! I'm glad our hopefulness came through in my words. We are not upset by his diagnosis at all. It's exactly the opposite. I begged God for this little guy for eight years and wondered over and over what His plan was. The more steps we take down this road of parenting Sam the clearer God's plan seems to us and we become more and more confident in His provision.

      My prayer for the last two years has been the chorus of Oceans by Hillsong. "Spirit, lead me where my trust is without borders. Let me walk upon the waters wherever you would call me. Take me deeper than my feet could ever wander, and my faith will be made stronger in the presence of my Savior." I can say with certainty that God is answering that prayer. And I am not afraid.

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  2. I'm so happy for you! You wanted a child so badly, and God gave you a precious one! He is just as wonderful as anyone else's child. He will bring you the same amount of joy, pride, pain and more as anyone else's child. The only difference is: he is autistic. As you said, that changes nothing and it changes everything! The autistic children that I teach have a very special place in my heart. The "label" changes nothing about my feelings...it just helps me know that sometimes I have to let them handle things differently. In my super-structured Music room, that is very important!.
    Now you can relax in knowing you are doing a wonderful job. He needs structure, which you have given him, (he needs many things that you have given him), but mostly he needs Christian parents who love him and want whats best for him. He definitely has that!
    I will have to say that your Facebook posts have brought me hours of joy. Sam is an amazing miracle, knit in your womb, and I know you wouldn't have him any other way. Even though you've had many struggles, you ARE doing a wonderful job!
    Thank you for sharing this information with us. God is good...all the time! You are all in my prayers!
    Melissa Nelson

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    1. Melissa, I always appreciate your words of encouragement, and I'm so glad we entertain you! :)

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