The constant trials of autism

We’ve had a lot of situations with J over the past several weeks. From him biting himself, to very early morning wake up calls and therefore lack of sleep, to body self discovery, a stuffy/snotty nose and an impacted ear. It’s all accumulated into one big cluster.

He isn’t feeling the best either today. Had a big day yesterday as we celebrated our fundraiser for autism surpassing its goal with a donors brunch and then had friends over for a game night. He coped very well- with all the different voices, noises and changes to his regular Saturday routine. However today he is suffering from all the over stimulation of yesterday; he’s tired, restless and unsettled.

I’m sitting on the floor of J’s bedroom now as per his request he wanted to lay down and he has been put back into pajamas. He recently discovered his private parts and though we were encouraged at the beginning of this revelation for him because we thought it might lead to a breakthrough in potty training, it has quickly become a thorn in our side. He likes to mess around with himself when he is bored or being defiant. So to make it easier for us all today, back to pj’s he went. You have to choose your battles and with all the other things going on with J today, mentally, this is one I didn’t want to wage war with.

I feel bad for my boy when he is feeling this way, out-of-sorts. I’m secretly hoping he’ll want to nap but I won’t push that on him, because it might result in another sleepless night for us both if I do. I could say I want us to both to sleep like babies, I definitely do for J, I on the other hand would like to sleep like my husband. Sleep through the laugher, squeals, giggles coming from J’s room, the thuds against the walls and the loud squeaks from him bouncing in his bed. But that’s for another lifetime. Instead, the essential oils have come out to hopefully spread peace and calm for us all as we take today on.

And to top it all off, we’re stuck inside again as another snow storm hit the Midwest. J loved the nice spring days we had earlier this week, being able to come home and play outside again. I’m ready to try hiking and walking trails with J, good old fashion exercise. He’s just ready to get out of the four walled buildings, whether at home or school, he has had to stay inside all day for too many days from this extended winter season.

This entry has kind of been all over the place but it some regards it illustrates how J is operating today and how his brain is functioning. From one topic to another and then back again. I loved how well J coped yesterday, not all days can be easy for him, he needs to have these days though to learn how to be comfortable and know what he needs to do to regulate himself. Not many people understand that his days can be so much harder than we all realize, that he did so well yesterday, I’m so proud. Now just to tackle all of the other J-isms, one at a time, after today.


Autism Awareness Needs to Equal Acceptance.

Tomorrow, April 2nd, is World Autism Awareness Day. This has been a great campaign for many years by exposing the world to autism and one that I love supporting. I’ve Lighted-It-Up-Blue every year since J’s diagnosis by advocating for this day, wearing blue myself, encouraging others to do so and even changing our outside house lights to blue.

However, in the past year I’ve come to support the concept that this day not only needs to be about awareness but also about acceptance. Our world still needs to be aware of individuals with autism, as recent studies indicate that 1 in 41 individuals are diagnosed, but more importantly these individuals need to be accepted. Accepted for their differences and challenges, for their own uniqueness, and accepted for who they are not just their autism.

Individuals with autism need support, patience, love, respect, and understanding. Autism isn’t something to be cured or fixed but rather acknowledged and not judged. This may mean that most people will have to go outside their comfort zone to engage with a person that has autism, but this minor discomfort for you is nothing compared to the discomfort an individual feels when they have to go outside their comfort to be apart of ‘normal’ society. (Normal is all relative though, there is no such thing as normal in my book. Normal is what you make it.)

For our J, I want him to be accepted by being recognized by others when he is in their presence. I want others to make sure they say hi and goodbye, knowing that he isn’t going to seek them out to do so. I want others to acknowledge him and ask how he is doing, knowing that his Dad and I will try to help him answer back but will most likely be the one answering for him. I would like others to engage with him whether he is watching a movie, looking at a book or bouncing on his exercise ball but knowing that he probably won’t answer back too much and I want them to keep trying. I want others to know that when they engage with J, it means the world to him and it means the world to me. It will take time, probably a long time for him to reciprocate back to you but when he does it will mean the world to you too.

I want all individuals with autism to be accepted not just because of my J but because they deserve to be. These individuals shouldn’t be defined by their autism, it just is who they are, it’s just a piece of them. They are just as friendly, brilliant and extraordinary as you or me.