Highs and Lows

Our county fair was this week. And we fair-ed harder than we have ever fair-ed before. The fair is a favorite event for my kids - for months now they have been counting down sleeps until the fair! They love everything about it.

Easton and Jovie did pretty well with the fair this year. They helped me man one booth and drew a lot of laughter and sweet comments from people stopping by. Easton showed a dairy feeder at the special needs livestock show! That was a fun and new experience for him - and he was especially happy to be paired up with his friend Madeline. 

Grayson enjoyed the fair too. He joined us for a couple hours on two different days which is really remarkable because about four years ago, we didn't think we would be able to do the fair again. He has proven us wrong.

Last year he rode the Ferris wheel and the Scrambler quite a bit, and he remembered that this year - even requesting in his own way to ride the Ferris wheel with my friend Pamela (who used to be his preschool teacher!) :) I was (and still am!) so proud of Grayson. He had ice cream and multiple sandwiches from the Lion's Club booth. And when it was time to leave, he was happy to go. He stood in line at all the rides too like a pro - something he would not have done even a few months ago.

So many people told me how well he did, how awesome he is doing, and how they see such change in him.

All of this is true. 

We have seen it too.

But as I am typing this I am struggling not to feel disheartened. 

Grayson's ABA therapy facility just changed their daily note system around so now I sign online to a portal and read how Grayson is doing each day. I have been kind of avoiding this, so I sat down this evening to check it out.

In just two hours on Friday, Grayson had 50 occurrences of aggression. Four occurrences of elopement. And 36 occurrences of hitting the wall/property destruction. And what is most sickening to me is 24 occurrences of self-injurious behavior.

This has brought me back to sobering reality. 

I don't know how those numbers compare to other kids, but for just two short hours, it seems like he was struggling the entire time. One of the notes said that a staff member had been warned to protect themselves when around Grayson. Even though I know this is a necessity, and it's something we have had to do here at home when Grayson shows aggression, it's difficult to read that about my son.

Clearly Friday morning he was having a bad time. The facility took great care of him as they always do! I do not believe this is how Grayson acts every single day. I know for a fact that he has great days, and he is aggressive tendencies are trending fewer and farther between. 

He just had a bad day. 

Like we all do.

I am so glad they collect data so closely. 

But it reminds me again that my son has severe autism. It shows me in cold hard numbers that this is severe autism.  I know that probably sounds crazy that I am reminded - but I am. Sometimes I forget because we are just living our life over here, and it is what it has always been. And when I do remember, grief tries to creep in and take me down over it - but often I just hold it at bay. Sometimes its just better not to go down that road of comparison, but its always difficult.

One thing that I have noticed in all of this is how Grayson just perseveres. Can you imagine the energy it would take for him to deal with all of that aggression? And he finished his day strong, and he was a happy kid on Friday evening. He was able to redeem the day and have a really nice time at the fair. He was able to move on from his bad morning, just like I need to now after reading all this data. 

So has Grayson been doing great at therapy? Yes. 

Does he have bad days? Sure of course he does. 

Will tomorrow be better? I am praying for that to be true. 

Do I still have no idea what I am doing? You better believe it.

We will take heart and keep doing the next thing <3