Currently, I am desperate for my youngest to get into Occupational Therapy (OT) and Autism Behavior Analysis (ABA) which has helped him a great deal in the past. It also provided me some tools to work with him on my own as I was able to see the therapists at work. Since his OT resigned in July, we have not been able to find him a new therapist. Double whammy, his ABA line and coordinator both left around the same time his OT did. He receives some therapy at school but it is not enough and I do not partake in that. The state where we live has a tremendous shortage of OT's and the demand for them is so high that he is on a waiting list 3 to 4 months out. There are plenty ABA providers but there's also a waiting list and difficult to find one with a clinic. The place I'm dealing with seems to have lots to staffing issues.
Frustration levels can often hit a serious high when you are making all the calls, doing all the research and trying to find someone that has a slot that fits his/their schedules. With two other kids schedules to consider, it can get overwhelmingly frustrating to schedule things. It doesn't help that because E is still so young he is still easily distracted and needs to be in a place that is separate from others. Distractions of "fun" equipment need to be minimized. By fun, I mean all the swings, beams, slides, etc that the OT gyms tend to have.
Currently, I'm in a battle with local ABA provider that has a clinic. Their lack of concern for my son is well, concerning. It's been since July that he has not received services despite the fact that I made sure all the paperwork was in place. Now I really shouldn't call it a battle since no one actually responds to me. The only effort is from my end. The Early Autism Project has failed my son for the past 5 1/2 months. Allowing him to slip through the cracks and not get the services he requires. I've done just about everything except send smoke signals to them demanding that he receive services. Not until you threaten to call the state and file major complaint, people start to respond. That's my least favorite hat to wear because I understand that with complaints comes the risk of people losing their jobs. I don't want to be that person but it's my son, so I do what I can for him. Then, when they come with all the services you need, you're not sure you want to deal with them because they have not handled things professionally. But you know you have to cave because what other choice do you have, minimal.
At the end of the day, we are not just parents. We are different kinds of therapists, a secretary, record keeper, Accounts receivable and payable, insurance coordinator, nutritionist, mediator, litigator, transporter, mind reader, translator, master healer of boo boos amongst many more titles. The most important is warrior parent. Fight for the right of your child(ren), make sure they get all the services they need in the time in which they need them. It makes all the difference.
Would I change my life? I'm not going to lie, there are days where I just feel like checking out. When everything seems to be just a little bit too much at once and it feels like there's no relief insight. That if one more thing is piled on I just might drop all the balls I'm juggling. That to many sleepless nights have added up and you're just exhausted. Then my son will come up to me and say "Mama, Huggies" with his perfect brown eyes. I remember how last year he couldn't even say mama and how he would refuse my hugs. This makes it all worth it. So I go on.
My son has autism. There's no changing that. He isn't broken, he is just different. I am stronger each and every day for having him in my life. We count our blessings.
My son has autism. There's no changing that. He isn't broken, he is just different. I am stronger each and every day for having him in my life. We count our blessings.
With Love and dedication, anything is possible!
