I realized the other day that I hadn’t been on here in awhile and needed to set aside some time to do so. That’s a challenge when your a single mom raising two autistic boys. I haven’t quite mastered multi tasking yet, but I am getting there. We’ve had a lot of challenges requiring changes the last couple of months that has kept us pretty busy.
John started going to a new therapy place, because we weren’t getting occupational therapy services from our previous provider. When you have a child with severe sensory processing disorder (SPD), occupational therapy (OT) is a priority. The transition went smoothly and he is doing well at the new place and they are addressing his issues and my concerns to our satisfaction. I’m very happy I made that move to switch. We are exploring a listening therapy for him to address some of his sensory problems and I will write more about that another time.
The month of May ended with a phone call from our school district. They called to invite John to attend their summer school autism program and for us to explore the new changes to the autism program that they have made since John left last fall. John started that this week and the transition went very well. He has always liked school, liked learning and we were really disappointed that things didn’t work out. I was very excited to see some of the changes, door bells on the doors to curb elopement, cubicles for independent work to minimize distractions, changes in lighting to help with sensory issues, and a sensory table. Yes! They really needed that sensory table and it was the first thing John went to on his first day. Our plan is to test drive the program this summer and hopefully transition into part time school in the fall. Eventually my end goal is to get John back into public school and out of home schooling. I think he needs that. I know he needs the social interaction and getting out of the house. I also need to shed the teacher hat. I get tired of wearing so many hats and some days I just want to be Mom.
Dustin turned 15 this spring. Raising a teen with autism is a entirely new experience for me. I’ve heard from so many people how raising a teen is a challenge in itself, then we have the extra bonus of autism. For months we’ve battled aggression issues, and that has finally calmed down with the help of Namenda and Risperadol. These two medications seem to be helping him and I am glad we decided to give them a try. Though we are still struggling. It’s the age I think. He wants to be independent, and is outgrowing the need for Mom so much. That is a GREAT thing don’t get me wrong, but his skills are still way below his age so it’s posing some problems.
In our state we have whats called an HCBS Waiver program. Both the boys are on it and it helps provide extra services for them and their special needs, like respite and supported community living (SCL). As Dustin gets older and closer to adult age I am having to explore what his life will look like as an adult. I’ve mentioned this before, it’s called transition to adulthood. Typically there are set ages for these transition steps. Job skills and coaching starts at age 16, and most of the adult services start at 18. What I have found as with many things autism related, everything is more preventative or early childhood geared. In dealing with teen issues I’ve discovered there aren’t a lot of resources out there. There is an age gap and we are in it right now. It’s frustrating as a parent to struggle with your kids at home and not have a good resource to turn to for answers. There is not a book or a good list available. It’s a time consuming effort of making phone calls, emails and lots of Internet research to find services and answers to your questions.
Dustin is in a non compliance phase with me right now. Not wanting to listen to or do anything that I say. Reward systems are failing and I’m running out of ideas. We have had three providers recommend that it’s time to maybe explore residential options. Those are tough words to swallow for a parent. It is my ultimate decision on any aspect of the boys’ life. At the same time I also want what is in both their best interests. This has made me to look to the future. Where do I see Dustin in adulthood? What does he want for his life? How can we get there? Many questions to ponder over. He has the capability of being independent some day but lacks the skills right now. It’s been my job to teach him these skills and we have made huge strides this past school year in achieving that goal. Our work is not done though, still much to accomplish and with the added bonus of non compliance, it’s making me rethink what might be better for him in the end.
Boy that was a mouthful and very hard to say. I have to be honest. When you are handed a diagnosis for your child when they are young, the word residential services always made me cringe. I always thought, NEVER will that happen, I will fight and work hard to make sure of it. 13 years later here we are. I don’t have all the answers and I’m still working out the details of what to do here. I just wanted to share with you all where we are at and the challenges that we face right now. One thing I do know is that in researching and exploring the idea of residential I am seeing some things that are making me shake my head. Like the gap in services from age 15 to 18. There are no group homes to put the boy in. He’s either too young, too old, issues too severe or a wait list 10 miles long. I have appointments and phone calls I am still working on. I will keep you posted on our progress. This is a subject that is in need of much discussion and awareness about it.
It’s great to be writing again. Makes me feel better to share our stories with you all. Thanks!