I have been Jake’s mom and advocate for a little over 6 years. Four years of researching, asking questions and finding the services he has needed. I have been in charge of all of his therapies, keeping track of his progression and always looking for new ideas that might help him progress even more. I have files galore. I have stacks and stacks of papers, evaluations, re-evaluations and documents. I have always known everything that has gone on with Jake; what is going on with him at school, therapy and of course at home. Tiring at times but when you have a child with autism it is necessary. Exhaustion takes over, everything Jake does raises a question. Is this “normal”? Is my gut instinct telling me the right thing? Am I overreacting? Should I say something or should I sit back and wait and watch? I second guess myself a lot. I am told by therapists, bystanders, and teachers ‘he is doing great. There is nothing to worry about. And my favorite…sit back and relax we’ve got this.’ But what “they” don’t understand is that I can’t sit back and relax, it truly isn’t possible.
I try to relax and enjoy Jake’s progress. He is more verbal than ever. He has met all of his academic goals for kindergarten. Jake will be promoted to first grade next year. Jake takes notice of his environment and is more aware of his surroundings. He watches his peers and imitates. Jake watches TV and imitates. He can answer who, what, when, where and how questions. Jake can tell you what he likes and what he doesn’t like. I am ecstatic! Jake has grown so much this past school year. The therapist’s, teachers and aides that work with Jake are extremely impressed. The managers of the school system for our exceptional children stop by to check up on Jake’s progress and the reports I receive bring an instant smile to my face. I should be able to relax but I can’t; believe me I try.
When you have been in charge of something for so long and all of a sudden you have to give up control and let others do their job it isn’t easy. Matter of fact, it is hard; harder than anything I have dealt with, if I’m being honest. It seems that every time I take that deep breath and relax something changes with Jake. I receive questions asking what is going on at home, questions from his team trying pinpoint what is making Jake react differently to a situation than he did before. So my brain starts working in overtime. I watch, listen and question everything. I start thinking I shouldn’t have rested, I should have been more vigilant. I should have, wish I would have…etc.; you get the point.
There is no rest. There is no relaxing. Because the second I take that break and release the breath that I have held in; something happens. I have to keep a vigilant eye on Jake to make sure that whatever it is we are doing isn’t causing a change in behaviors or the way Jake interacts at school.
I know my son better than anyone else. I know what makes him happy, how to encourage him without generating a meltdown. I also know I am very overprotective of my son. But being overprotective is what I’ve had to be; when you have a child with language delays or no language at all you are their voice. A parent of a special needs child can be more protective than they might be to a typical child. If you don’t speak for your child, no one will.
All of this to say, there is no rest. I have to stay on top of things. But I know that there needs to be a healthy balance. I choose to stay on top of Jake’s behaviors, his progress and stay in touch with anyone that comes in contact with Jake. But I have to relinquish my control a little. Let go and let the teacher’s, therapists and aides do their job.
Summer break will be here before we know it and I will be in full control. And in the fall, relinquish that control all over again.
My hope and prayer is that this fall it will be a bit easier for me to hand Jake over to our team. I will take all that I’ve learned this past year and put it to good use. And then maybe I will be able to relax and let go a bit easier 🙂
“When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God…” Isaiah 43:2 & 3