learning to “chill”

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 🙂

22297_382044198537831_145420945_n

 

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 

Advertisements

peer influences

Jake has become very aware of his surroundings. This year he has interacted more with peers, he notices things and has started imitating what he sees. This is all incredible! As much as I love that he is imitating I need to remember to take the “good” with the “bad”.

We have been working on social skills for the past several months. Because Jake is in kindergarten full-time now he becoming even more aware to what his peers are doing. Peer influences are valuable. Whether they are good influences or bad they are both constructive; helping Jake discern right from wrong.

A week or so ago Jake was playing with Lexi. He likes her to chase him and then Jake throws her toy. He gets so excited and really loves this dog. While they were playing Jake took one of Lexi’s toys and points it at her and says “I’m going to kill you…kill, kill, kill.” Then he laughs and runs away. I was surprised! Come to find out, while on the playground he had played with some of his friends and they had been running around saying this. Jake had no clue what he was repeating but he was imitating what he saw the boys doing and thought it was fun. I really didn’t like it and because of the time we live in it could be misunderstood. But I also thought this was really good because he is becoming more aware and trying to imitate others.

It’s a fine line. I want the positive peer influence but with that you also get the negative. But that’s how we learn. Jake can understand and even if you don’t think he is aware of what is going on around him or you think he doesn’t understand he does. Because he is autistic it takes him a while to process all the information he takes in but it eventually comes out. It might not be immediate but given time it is there.

Last week my oldest, Anthony, brought his family for a visit. Anthony is married and has 3 step children; 2 boys and a girl. The younger boys, ages 12 & 10, seemed to enjoy playing with Jake. Jake watched them and wanted to be around them the entire time they were here. One of the things I love about these kids is that they see Jake’s delays but they don’t treat him any different. The younger of the boys, Kaden (10) played a lot with Jake and when Jake didn’t want to take turns I overheard him say “but Jake we have to take turns, right now it’s my turn then it will be yours, okay?” I hear Jake say “okay!” Then Jake runs to me and said “me and my cousin are taking turns!!” (technically they are Jake’s niece and nephew)

While they were here we went to the zoo. At first Jake was super anxious. He didn’t want to go to the zoo or look at the animals, he just wanted to run around. But I saw Jake take notice of what everyone else was doing and eventually he wanted to see everything. At one point there was a “cave” where you could walk inside to see the animals through a window. Jake would not go inside because he thought it was too dark. Allie tried to coax him in but he wouldn’t budge. But as soon as he saw Kaden go inside he wanted to try. Anything new or different Jake would balk at it but once he saw his “cousins” doing it he quickly wanted to join in on the fun.

These past few weeks have been a learning experience for all of us. We can’t force Jake to do a lot of things, he needs to take a few minutes to process the situation. Even if peers are present he may not always do what we think he might enjoy. But you can see he is thinking about it instead of melting down due to anxiousness. There were a few times at the zoo he didn’t want to do something and that was that. But more than not he was right there with the boys getting the full experience of the zoo.

I have to step back a lot of the time. I know Jake better than anyone and I know what might or might not cause him to be scared, anxious or what will create a meltdown. But I try my best to let him experience things. One of the most valuable lessons I’ve learned recently is if I hold Jake back and not let him experience the good with the bad he won’t grow. You might think this is a no-brainer and in the past it has been, but with Jake it is just different. I want to protect him as much as I can, I want to shelter him. But in doing so I am really not doing him justice. He has to take part and be exposed to various things in order for him to find out what he really likes and what he doesn’t. It’s my job to be there for him as his encourager and biggest cheerleader!!

Zoo2015 (3)
Kaden, Jake & Kolton
Zoo2015 (66)
Jake & Kolton
Zoo2015 (131)
First carousel ride with Sissy!