Sunday, April 2, 2017

World Autism Awareness Day

Ok, let's see.

Hayden came back today from several days at his dad's to have a huge meltdown. As he always does after being at his dad's for several days. And all Joseph and I can do is wait for it to happen and try to support him as best we can. He was throwing things all over the place, yelling and screaming, trying to hide somewhere from himself because he gets so upset that he just doesn't know what to do. He can't verbalize that he just needs a break and some time to think. I would post a video, but he's embarrassed and doesn't want me to, so I am going to respect his wishes.

He has become aware enough to know it's not typical behavior, but not aware enough to always control that behavior. Through ABA therapy and Biomedical Interventions, we're making huge strides, though, and he is much improved from even just a few months ago.

We got him calmed down by giving deep pressure and some ibuprofen. He's now outside playing with other kids. Often this causes another meltdown by the end of the day, because he becomes overstimulated and overtired. So there's that to look forward to. Just another day living with autism. Although it was nice, when I checked on Hayden, for the neighbor to be surprised that he has autism, and to say that we were doing well with him.

If you want to throwback to another rough day in our lives with autism, this is a good blog post I wrote about the time he broke his arm: http://hope-lavender.blogspot.com/2012/10/broken-bones.html

Sometimes people say, "it's not that bad. At least it's not (insert diagnosis or life problem here)." I'm not sharing to say we have it worse off than anyone else. I'm sharing to show you what our lives are like. Some days are great. Some days are ok. Some days are just plain awful. You don't really know what the day is going to be until it happens, though sometimes there are clues, like full moons and holidays.

So I share not to complain, (because frankly I think Joseph and I are holding down the fort pretty well!) but because I want people to be aware. I want you to see a child in a meltdown in the store and, instead of thinking, "That mom needs to discipline him better," maybe think, "I should give his mom a smile and ask if I can do anything to help."

Sometimes people say that Autism Moms seem bitter. That we're not cheery enough about the situation. I think some of us are just trying to navigate a life that maybe isn't quite the life we had imagined for ourselves. We are trying to make lemonade with our lemons. If you have any to spare, we may need to borrow some sugar. And if you have it, a helping hand.

What I really want people to be aware of on Autism Awareness Day is that people with autism need more help than they're getting. Services in school have to be fought for, and even then are often still lacking. Jobs aren't available for young adults once they leave school, and the training is sometimes hard to come by. Biomedical therapies are needed and yet many families are unaware of what they are or how they work. They're also costly, and grants are hard to come by, so parents must pay out of pocket. ABA therapy can be extremely expensive, and not available in all areas, so some families must do without.

Parents are exhausted and tired of trying to prove themselves to everyone-- that they're trying their best, that their child isn't a 'brat', that they have their sh*t together (when often we're not sure either!) and that we're really sorry that we're late (AGAIN) to whatever it is we were supposed to be on time for, because our kid couldn't keep it together today. We're tired of convincing ourselves that tomorrow will be better, when sometimes we're not sure if it will be. We're tired of sleepless nights and talking about poop. Comforting siblings who don't understand, and buying special cupcakes on a day's notice. Doctors and therapies and conferences and support groups... Autism is treatable but it's a long journey involving a whole lot of work. There are no days off. There's no play book. And so what Autism parents really want at this point is 10 minutes to ourselves and a glass of wine.

This is what Autism Awareness means to me. It's probably different for each family and that's ok. Where I see a need is that people with autism need services and respect. Families need help and support.

I want you to consider organizations like tacanow.org, autism.com and generationrescue.com if you are one who likes to give to charitable organizations. Autism Speaks has too much overhead, and help isn't getting to those in need.

I want you to be aware that 1 in 45 children in our country is affected. It's important for all of us to be aware of this problem and how we can make it better for everyone.

There is hope for autism, and that keeps me going. Below is a picture of Hayden after our long trip to the zoo. His sister's crying is a trigger for him, and often sends him into a meltdown. He's been working on strategies for this with us and his therapists. So on this day, when the rain was scaring her and she began crying in the car, instead of melting down, he asked if she wanted to hold her hand, to make her feel better.

Awareness to me also means: There is Hope.