God Made You Special...

As some of you may already know, earlier this month, Avery had to go through a two part screening process at Boston Children’s. There was a team of pediatric behavioral specialists that observed him from another room where Avery could not see them, while another specialist performed the assessment with him. Last week, we received the results of their findings.... Avery was diagnosed with autism.... Although I have always had my suspicions, since he was about 9 months or so, it was still difficult to hear those words. Since then, I have been spending any free time I get doing some research, talking with other autism parents, and planning for the next step, which is getting him setup with ABA services. We have shared this news with a few people, but now we feel it is a good time to let the rest of our family and friends know so that everyone is on the same page and has the information they need to better understand and interact with our little warrior.

Unfortunately, there is still a lot of misinformation and stereotypes out there about autism. I feel like a lot of people still have very old school views of what this means. When people hear you say your child was diagnosed with ASD, they expect to see the next Rain Man come walking out, counting cards... Yeah, no... Let me just stop you right there. First of all, my child isn’t Dustin Hoffman, and he certainly isn’t going to the casino with you to help you win millions. Second, I don’t think it is possible for people with those stereotypes to be any more misinformed. 

So, on that note... What does this all mean for our child?? Well, it means that Avery processes the world around him in a different way. His brain is basically wired differently than mine and yours. Autism affects every child in a different, unique kind of way. With Avery, it affects— 

1. His communication skills. According to the results of his screening, Avery’s speech and communication level is still that of an 18 month old. For those who don’t personally know him, he is almost 2 and a half years old. When you hear him try to talk, it still just sounds like infant babbling. You may hear one or two words, but they are not that clear, and not always used functionally. In fact, a majority of the time he is just mimicking what others are saying. Those are some of the reasons why it is not “just a speech delay”. 

2. His sensory processing. He may seem affectionate at times, but it has to be on his own terms. If someone goes to hug him without him initiating it or without his approval, there will be a meltdown. Sometimes bathing and diaper changes can be a struggle because of the physical contact. When he is overstimulated, he will react by crying, and pulling on his face and ears. It’s actually quite scary, because it could cause self-harm. We also still struggle with meal times, because just like many other ASD children, his sensory processing issues cause him to only be able to tolerate certain foods. No, he is not a picky eater. He only eats certain foods because he can only physically tolerate certain foods. Again, his brain is wired differently than ours. His brain processes things differently than ours.... And last, but not least,

3. It affects his behavior. To those who don’t fully understand autism, Avery’s behaviors and little quirks may just seem like normal toddler behavior. They are not... For example, he does a lot of repetitive things such as dumping his blocks out of the bucket and putting them back in. Over and over... and over. He could do that for hours, and if you try to stop him or transition him to another activity, he will have a major meltdown. He also likes to be in constant repetitive motion at times. Sometimes he just runs from one room to another, repeatedly. Not so much because he has a lot of energy, but because his brain never stops going, and that is what he needs to do to get whatever type of stimulation his brain needs at that moment. He will open and close doors...repeatedly. He will say the same word or sound...repeatedly, even if you answer him back. Lots and lots of repetitive behavior... He does a lot of finger tapping which most people probably have never even noticed, and at meal times he will repeatedly bang his head against the back of his high chair, until one of us puts our hand behind his head and tells him to stop in a firm tone of voice. He likes to line up his Hot Wheels cars and trucks by color and by pairs. We call it his car show. If you try to move one of the cars...yup, you guessed it, there will be a meltdown. And no, it is not necessarily just because he is two, and not getting his way. I will repeat it again.... his brain is unique, and it works in a unique way, very differently from ours. And that is ok. 

I know many of you will still disagree with his diagnosis, and that’s fine. That’s your opinion, and you have a right to feel that way. I don’t have the time, nor the energy, to spend trying to convince people otherwise. Our time and energy needs to be saved up to spend on caring for our son, because as he gets older, it will most likely become more challenging. I spend 24/7 with him. I see these little quirks and behaviors every second of every day. He has also been observed by a numerous amount of specialists. Specialists who have degrees, and extensive amounts of experience and knowledge in this field of work. So, yes, we believe more in their diagnosis than others opinions, and we will quickly change the subject of conversation, because even though those comments and opinions may be made in an attempt to help us, they make the situation more challenging and provide zero benefit for Avery. They are a denial of his struggles and his different view of the world. A refusal to give extra support. Support that we could really use right now to help us adjust. And quite honestly, as Avery’s parents, those comments and opinions can be hurtful to George and myself. I am going to defend my child, and I will be his voice. I am going to defend his diagnosis to help others understand and move past the stereotypes. I will be his advocate from now until my last day on this earth. I am his mother, and I know him better than anyone else. 

At the end of the day, Avery is still the same lovable, silly, most adorable little man that we all know and love with our whole hearts. My best friend said to me, and this is one of the MANY reasons why she is my best friend, because she is truly amazing.... she said, 

“You’ve got whatever trials and tribulations are thrown your way. And you were given an amazing, special, sweet little boy because you deserve all of the love he has to give.”

She will never know just how much that meant to me. Whether she agrees with the diagnosis or not, it didn’t matter. She knew that it was exactly what I needed to hear, and she couldn’t be more right. 

As you may have noticed, there have been some changes made to my blog. It is still a work in progress, but I will be adding a resource page with links to sites full of useful information on both infantile scoliosis and autism. I hope you will check them out, especially our families and friends who are a part of Avery’s life. Also, please feel free to talk to us about any of this, or ask questions. However, and I say this with all the love in my heart, unless you are one of Avery’s specialists, we do ask that you please keep any comments that involve judgement or what you think is going on with our child to yourself. All we ask for is the love and support that Avery needs and deserves. Thank you.