Starting a New Chapter

Tomorrow starts a new chapter for Josh. Oh, he has been in ABA (applied behavioral therapy for children with autism) since he was three, but tomorrow he moves to a new center that is highly specialized in working with children with autism. It is also a new chapter because we will be attending full time and not returning to public school. 

The decision to pull Josh from his school was one I agonized, lost sleep, prayed about and deliberated over for months. Josh has a great school, a wonderful special education teacher and a team who care deeply about him. But in the end, Josh could not function at school. And I truly mean that, he was not able to manage school and the stress from school was contributing to his health issues. Josh lacks basic functioning and social skills that are needed to attend school. And while in theory special education programs are designed to help with this, Josh was just struggling too much. He couldn't get on the bus, he cried and screamed and was forced into the building. He cried, threw things and ran away once at school. He had finally reached a point where he actually ran out of the building several times and had to be physical restrained multiple times. He didn't understand what was expected of him, he couldn't communicate his needs, fears or feelings. And because negative behaviors where the only form of communication he had, they just continued to increase every day. Academics were not even on his to do list anymore, he reached a point where he went to school every day because he had to, but he didn't achieve much else there. And to make things worse, because his underlying medical issues are triggered by any stressors to his body, his health was taking a huge toll. 

So as the school year came to an end, the reality of needing to find a better solution for him was at the very front of my mind. And understand, it wasn't just that we needed to find a way to make school easier for him, it was the fact that he was failing at school because of his total inability to function in the world around him. And that was what needed to be addressed. He needed to learn how to dress himself, how to sit a table, how to hand up his backpack and jacket, how to follow directions, sit in a circle time, answer questions, raise his hand, ask for him, take a break, play with a peer. The list was too long and he had so much to learn, and now we had a list of negative behaviors that needed to be dealt with before anything else could even happen.  

Then we got the call.... the autism center for which he had been on the waitlist for over a year and a half had a seat available... but it was full day only (aka, he couldn't go to school and ABA, it was one or the other). And thus began the deliberation. And in case you read all the problems he had a school and think that should make the decision easy, let me tell you this was one of the hardest decisions of my life. Abandoning traditional school was a huge deal. Not to mention the emotional piece. Call it self-centered, but I took this hit hard. Most of the losses of traditional norms blow past me, but this one was not so easy. It meant admitting that not only does my child have a disability, he was so significant right now that he couldn't even attend school. It meant saying goodbye to class parties, first day of school photos, field trips and all the other fun stuff that comes from school. It was scary too because this is our 'last resort'. Meaning there is really nothing more 'intense' to try if this doesn't work, that is a scary though. It meant leaving his old ABA center where we were comfortable and knew everyone. And it meant starting over which forming relationships, advocating, informing others on all Josh's needs. But in the end I could deny that this center was the right place for Josh. 

So tomorrow starts a new chapter for Josh. His first day of full time ABA. I have so many wishes and desires for my sweet boy. I want him to thrive. I want him to be happy. I want him to feel safe and comfortable. I want him to learn to talk and make his needs know. I want him to make a friend one day. I want him to be able to wear clothes and shoes. I want him to learn how to sit at a desk. Oh the list could go on. But in the end I want him to thrive, to just make progress. Regardless how slow, regardless if it is all my goals and wishes, I want to see him move in the right direction to just living life to his fullest. So tonight I am taking it all in, I am allowing myself to acknowledge the perceived losses, the fears and hopes. And tomorrow we will do it up right. We will take his back to school photo, we will be excited and we will embrace all that this new chapter holds. Because Josh is one of the bravest fighters I know and if anyone can embrace this new path and rock it, it is him!!!

Let's Talk Church

Let's talk church... I have shared many times about the Access ministries our church has and how blessed we are by this. Josh cannot access Sunday school or church, let me say that again, he CAN NOT Access church! Not he has a hard time, not he gets a little hyper, he cannot access it! Even if he has a special person willing to walk the halls so we can attend church, he still is not accessing church or Sunday school, he is missing it because of his disability. We have schools who legally have to find a way for all children, regardless of ability level, can access the same schooling as every other child. We have shopping centers like target with special needs carts, we even have 6 flags theme parks that recognize the need and have strollers and sensory rooms. But at churches the best we can do is find a helper to keep him calm so WE can go to church. That is not good enough! Jesus called ALL the children to come to him, not to be entertained, not just he kids who can sit still and understand the prepared lesson. Josh needs to know Jesus, he is called to know Jesus as HIS savior. And however that lesson needs to be presented to him we need to find that and advocate for that! ALL children in ALL churches need to have access to God, to church, to the Sunday school classroom, and the lesson in a way they can understand and grasp. We are blessed. We have a church that understands and is passionate about that. But it is not the norm. And as a body of Christ we need to rise up and recognize this need and fight for these children and adults that cannot access their Lord through traditional church setting. Today josh doesn't have him helper (he is an Air Force cadet and gets to be home with his family for a few weeks, amazing godly young man serving our county and his Lord, I cannot be impressed enough with this young man)! So Josh and I get to sit on the floor in the back of the service, the only way he can handle this situation! But he is blessed, he can access his Father, and we need to become more passionate about this until ALL children can come to Jesus openly and without disabilities standing in their way!