As Nathan is getting older, it is becoming increasingly obvious that he is, well, different. Up until recently, we’ve been explaining away, justifying, or flat-out denying that his quirks are anything less than typical child developmental phases. However, since having the baby I am no longer able to devote all of my energy and time into making sure his environment and routine doesn’t set off melt-downs or aggravate his quirks. So I started to read online about these quirks of his, and to my surprise other moms were dealing with the same things. The only thing that bothered me is that these mom’s children have all been diagnosed with things such as Autism Spectrum Disorder (ASD) such as Pervasive Developmental Disorder-Not otherwise Specified (PDD-NOS) or high-functioning Aspergers (HFA), or they were diagnosed with Sensory Integration Disorder (SID) and sometimes both ASD and SID. This alarmed me.
So I had a choice to make. I could either keep denying/justifying his behavior and just hope it goes away soon, or I could run all of these concerns by his doctor and see what she says. I chose to do the latter. After typing up a list of his quirks, I am glad I chose that route. Seeing everything on paper forced me to accept that he is indeed different. It also made me feel emotional because frankly I have been struggling with dealing with it. Each melt-down made me feel like I was failing him somehow, that I just wasn’t a good enough mom to him and that is why he struggled so much with ordinary life events. Irrational I know, but it was all I could come up with.
I also found some online screenings- one for ASD and another for PDD-NOS. The ASD evaluation (called the MCHAT) suggested that he is at high risk for Autism. The PDD-NOS suggested that he has moderate PDD-NOS. I printed these results out as they suggested to do and presented this along with a list to Nathan’s doctor. She sat with us for over an hour asking us questions and going over the list with us. By the time we were done, we were surprised to leave the examining room to find that the office had already packed up and gone home for the day.
A few of the quirks that we mentioned to the doctor:
Nathan has incredible memory:
We can drive somewhere once and he instantly memorizes the route to the place. Unfortunately, if we go a different route to the same place he will have a meltdown. He will kick and scream that we are going the wrong route.
He has memorized tons of dialogues from watching Netflix on his ipad. He frequently sees a kid’s show on TV and will open netflix, find the correct show/season/episode, and fast-forward the netflix version so that his ipad and the TV are synchronized.
He has narrow, yet advanced interests:
His interests can pretty much be narrowed down to tornadoes, rockets, volcanoes, planets, and….car washes. Oh how the boy loves his car washes! He spends hours watching car washes on youtube and setting up accurate models of car washes for his toy cars. He talks constantly about his other interests and has no idea that his audience is beyond bored with hearing about it. He says the same things over and over again about these interests of his, all of it from things he has watched or heard somewhere but mostly from his ipad.
His free play is repetitive and he is strict about accuracy. All of it comes from a story or script he watched on youtube, tv, or netflix. He plays rocket launch for hours, and heaven forbid you vary the countdown to launch. He points to pictures of the solar system and tells you all about it, but says the same things to the point that we’ve heard it all 500 times. He watches videos of spinning tornadoes and spinning brushes of car washes to calm himself down.
He has serious sensory issues:
He HATES washing, brushing, or cutting his hair. With washing his hair and cutting it, he has gotten so upset that he throws up. Nothing can be done to ease the process for him- bribes don’t work, candy while doing it doesn’t work, discipline makes it worse, and you can forget about tricking him or distracting him. Also- don’t touch his ears. At the doctor’s office he will hide under the table and kick and scream horribly if the doctor tries to look into his ears.
He hates being hugged, snuggled, kissed or touched. He barely tolerates any of them. The only time he volunteers anything is if it is a part of his routine, but it is rarely a genuine response. The fact that he isn’t snuggly or hugable is probably one of the hardest, heartbreaking things for me as a mom.
He hates getting his hands dirty. Even as an infant he wouldn’t touch messy foods. He also has always smelled everything before eating it.
He is physically behind and quirky. He hates the grass touching his bare feet, even as an infant. He also doesn’t seem to understand the process of learning new things physically, like riding a bike for instance.
I could go on and on about everything we talked about to the doctor. At the end of the appointment, we came up with a Plan of Attack to get Nathan back on track again. She diagnosed him with Sensory Integration Disorder and motor delays. He is also in the process of getting on a very long waiting list to be evaluated for ASD/PDD-NOS at our local Autism specialist clinic. As of next week, he will be doing weekly physical and occupational therapy to help him have a more typical experience with things such as washing his hair. In the meantime, I am doing everything I can to learn how to help make things easier for him.
I should be saddened by a diagnosis, but I am not. He is still my Nathan, my quirky, brilliant, funny little boy. Now that I have a diagnosis, it has really opened up a whole world of resources to me, and I hope utilizing them will make a big difference to him. A diagnosis doesn’t change who he is, it just helps explain and predict his behavior. All of these things help me become a better parent to him and helps me know what I can do for him. Quirks and all, he is still an incredible child and I am so blessed to have him in our lives…
And Handsome too!