Please Don’t Feel Bad For Us: A Grayson Update

by Lauren on April 27, 2017

I realize it has been quite awhile since I’ve given an update on Grayson’s progress.  Truthfully, we’ve just been so darn busy doing life these days that every time I try and collect my thoughts on where he is at, my mind has trouble conceptualizing everything into one cohesive post.  But, I am going to try….

So it has been officially three months since we received the diagnosis of autism for Grayson and I can tell you how we feel about that diagnosis now is entirely different than we felt back in January.  When we first find out that your child has a label, it’s hard to swallow.  Not because you think of your child any differently in that moment, but more because the idea of the child you had in your head suddenly vanishes.  Let me explain…..

I knew Grayson was going to be slower at talking, but I always imagined him being able to run up to me and saying things like, “mommy, I love you,” or “mommy, I need you.”  It is true that Grayson doesn’t necessary say those things, but he sure does communicate them in his own way. Grayson is one of the most affectionate and loving little people I know.  His hugs are fierce and his kisses are sweet and he certainly doesn’t hold back in giving those things out. Grayson may not run up and say “hi” to you, but he will surely blow you a big kiss and wave goodbye.  When I tell Grayson that I love him, he may not say it back to me with words, but he immediately wraps his arms around my neck and kisses me over and over on my cheek.

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Our therapist recently said something that really resonated with me.  She said kids with autism are just the same as their peers, they just learn in a different way.  Boy is that true!  Grayson is learning new things every single day. He listens, he participates, he engages but most of the time, he needs a little extra help to get there.  For example, instead of just saying, “Grayson, clean up your toys,” and expecting him to do it, many times we have to physically initiate the process by pointing to the toys and holding out a basket.  He knows exactly what to do from there.

Let’s talk about Grayson’s progress……

Grayson has gotten really good at adapting to new situations. Between bringing a new tiny human home and placing him directly in his world, to adjusting to a new work schedule for John, to starting a preschool program, Grayson proves that he has little trouble with separation.  He is starting to engage more and more with his peers, although its not always consistent, he definitely shows more interest in other kids these days. He has gotten to the point where he even walks up and gives hugs to his friends (unprompted), which was a HUGE step for him.

We are really trying to enforce Grayson learning from other adults (other than just me and John) as this is such an important piece for him as he gets more involved in organized school programs. We are realizing that Grayson WILL engage with other adults, he just needs one-on-one engagement with them. I’ve recently looked into getting Grayson a TSS for when he starts preschool this fall as I really think a personal helper for him in school is exactly what he needs.

We are still blown away by the advancement in this speech and OT therapy. Even though Grayson still isn’t using sentences, his communication has gotten so much better and his play has become more engaged and purposeful.  As long as he is motivated, he will engage, laugh, take turns, and listen so beautifully.

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Grayson’s therapists tell us every session that he has such great skills in place, it’s just all about getting him to use them consistently and each week, he seems to be doing better and better.  That’s not to say he doesn’t have his days or even weeks where he shuts down.  We hear this is very normal (in just about any child’s development) where with the onset of new skills comes some resistance.  As he learns more and more, his little brain gets overloaded and he needs a day or two to reset.  I try and recognize those times and let him relax a bit with not a lot of pushing.  He’s like a car running on fuel.  When his tank is full, he is ready to go, but the more he goes the more his gas runs out and he often needs a break.

As far as what we are doing, things still remain the same in terms of Early Intervention, his diet, and supplements.  He just began a summer program at the preschool he will attend in the fall that consists of one day a week for a few hours, which is a great introduction for him.  He does well in his Kid’s Club at the gym, and does so well at his Sunday School.  At home, Grayson continues to learn in his routines and is always finding new ways to communicate with me and John.

I get asked all of the time how Grayson is with his little brother and truthfully, he does pretty good with him.  Grayson isn’t super excited by him but he’s not bothered by him in the slightest. I often catch him playing with his hands or rubbing his head but it’s not like Grayson is trying to play with him just yet. I’m sure it could be better, but considering the situation, John and I are actually really pleased with the whole thing.

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Okay, this is all leading me to my last and final point.  Since Grayson was diagnosed, we are learning that although Grayson may not develop or learn at the same speed of his peers, that doesn’t mean anything is wrong with him or that we feel bad for him in any way.  This little one is smart! He has so much joy and happiness and so many wonderful things and people in his life.  I remember when he was first diagnosed, I reached out to my friend, distraught, and asked her what I was supposed to do.  Was I supposed to apologize for him every time I dropped him off for someone to care for him or explain his situation?  Was anyone going to want to watch him or teach him? She told me that my mindset will shift….I will advocate for him in every way that when someone new is taking care of him, I will seek out the people that WANT to help him and won’t settle for anything else.  Boy was she right!

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Often times, when we tell people that Grayson is autistic the initial response we get is, “I’m so sorry.”  But that response is not something a parent of a special needs child wants to hear.  They don’t want you to feel guilty or bad for their situation, because truthfully, their situation is nothing to feel bad about.  Sure, moments can be more challenging, but ultimately, their journey is something beautiful, something that most people won’t understand.

Grayson is incredible in every way.  I will be honest, I went from thinking I wasn’t cut out for all of this to now feeling I can’t imagine life any other way.  So now when anyone says, “I’m sorry” at my situation, I simply respond with, “I’m not. Our life is kinda great.”

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4 thoughts on “Please Don’t Feel Bad For Us: A Grayson Update”

  1. Casey says:

    I love this, Lauren. I still rollercoaster through some of these early feelings even after almost 3 years of knowing my little guy’s diagnosis. You are doing great, and I love how you are striving to give him the best of everything. I would absolutely recommend that BCBA consult, as an ABA therapist can also fill the role of a TSS. I’m praying for you on this journey!

    1. Lauren says:

      Thanks Casey! We actually just applied for MA since our insurance won’t cover ABA therapy so I’m really hoping we can start with that. I’ve heard such great things!

  2. Alli says:

    what a beautiful post! thank you for sharing this journey, Lauren

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