I’m a bitter autism mom right now. Sometimes I feel so stupid. I’m not smart enough to understand all the legalities or where to look or find all the possible resources available for our son. I’ll see that someone got off a waiting list and into a therapy or activity or program, and I’ll think to myself is that something we should get J into, would he enjoy it, would it be beneficial, would it help in someway possible? In the same thought sequence, I feel that we have explored every option available for J or that we think J would enjoy or just in the very least tolerate for some time. Hence our pulling him from the AllPlay Miracle Baseball League this summer. It was taking Lance more work just to keep him in the dugout to be apart of the team than was worth the effort of the struggle.
Today I see from another mom on a social group I’m on with parents of autistic children, that she was able to get her child Medicaid. Now they are finally able to start pursuing ABA therapy. And though I’m honestly happy for her and her child, I am extremely jealous. Jealous that for another child this therapy may work for them, that they may have a program that excels, that they’ll start making progress. I’m jealous because they were able to get appropriate coverage to cover the expenses of this therapy. I’m jealous basically because I wanted this program to so desperately work for J, for us and it just was not able to. I wanted to start seeing progress in J from being in sessions 4 times a week for over 2 months, for us to be taught how to incorporate the therapy when the therapists weren’t here to improve/increase our involvement and J’s progress. I want it to not pillage our savings in order to provide a service that we wouldn’t be able to afford after a year because we don’t qualify for Medicaid. None of this happened.
So we took 7 months off, no therapy outside what school provided. I wonder from time to time if we would have stuck with ABA would we be better off, would J be farther along? Maybe, but I’m glad we choose this route. We are blessed to be in and have the school system we do and school staff that want to help us as much as we want to help them with J’s growth and development.
As a reminder to myself that even though not everything works out the way I want them to for J, our family has so much to be thankful for. Remembering these things are important. I’m thankful for the roof over our head, the delicious food Lance makes and the clothes on our back. Thankful that Lance and I have great careers, with employers that have always been able to work with our crazy schedule. Thankful that we have extra to spend on outings and adventures with J. I’m thankful that we have each other and our adorable 6 year old. Thankful for our supportive and amazing family, friends and co-workers. Lastly, I’m thankful that Parks and Rec is on Netflix for my viewing pleasure with a glass of wine and I have plenty of books to read when it’s finally time to go to bed.
I’m always going to be hard on myself and what I feel like I should and can be doing for J. But any special needs parent, including myself, has to remember that if you are doing your best, giving it your all (which if you’re a SEP you usually are), that is all you can ask of yourself. It doesn’t even have to be every day, we are all human, but since giving up isn’t in our vocabulary with our children, take it one day at a time. The hubby and I will continue to teach ourselves a type of ABA therapy called ABBLES-R here at home that J’s resource/special education teacher uses and that J has really progressed so well with this past year. We will keep exploring all our options for new therapies, going back to past therapies used, seeking new activities and taking adventures daily, even if it’s just to Costco. They sure all won’t be sugar coated rainbows and sunshine days but they’ll have glimpses, some that will last longer than others and that is better than not having any at all.