Doug and I recently had an IEP meeting for Gavin with his school. The purpose of this meeting was to discuss the option of adding home services to Gavin’s plan. The option of home services would provide Doug and I an opportunity to learn different skills to work with Gavin that would help him both at home and school. The goal of these services would focus on community safety, daily living skills and increasing Gavin’s flexibility. We were excited to learn that he qualified with his school district for three hours of services a week on top of the hours he receives at school.
Once that discussion was over I had a brief moment, where I thought to myself, we finally figured everything out for Gavin and we were done jumping over hurdles for him. I actually thought to myself maybe all of our fights for services and things that he needed for him were behind us and we were finally on a path to normal. That was my first mistake; I forgot that Autism is our new normal.
Once we finish talking about the home service piece we transitioned into talking about summer. Summer was not originally included in Gavin’s IEP but we knew that we would be checking back in at some point to discuss it. I lit up with excitement and let them know about our plans to enroll Gavin in the daycare for the summer. I continued on and on about how he would be going this daycare and that we were excited about this opportunity for him.
I quickly looked around the room and read the three faces staring back at me. They did not share in the same excitement or joy that I had over Gavin attending this daycare; instead their faces showed concern and disbelief. I stopped myself from talking and told the room I was getting the sense they did not agree with our decision. Individually they each expressed their concerns about how scared/surprised they were that we would even be considering this idea. They looked at one another and said this would not be a good idea for him and repeatedly told us he was not ready for this yet.
Everything in that moment crushed me. We had been receiving report after report on how well Gavin was doing at school. We were being told to prepare for him to transition into an inclusive classroom sooner than later. We couldn’t help but feel mislead or that we read way too much in to these messages. I can’t put into words how excited I had been that Gavin got himself into the daycare. He was going to be located right next door to Kendall’s camp; we were finally going to have one morning drop-off and one evening pick-up. All of that was slipping away before my eyes and I could feel myself slipping into a feeling of discouragement.
I tried to explain to them that Doug and I were running on empty trying to get Gavin back and forth to school. I went on to add that there was no way for us to feasibly make their summer schedule of 9am-1pm work as we both had to be to work by or before 9am. Then it happened, the dreaded suggestion of putting Gavin on a bus; a bus with no aide.
This winter I purchased a new car and Gavin refused to get in it every day for the first week I had it. He would scream at the top of his lungs for the entire 30 min drive after I wrestled with him to get him in the car. This was with me, his mom, there is no way I can see him having enough flexibility to get into an unfamiliar vehicle with a stranger driving him. I couldn’t see him or me having a positive day if we were going to start it with him screaming and fighting me every morning. There we sat turning down another option the school was offering us.
Suddenly Doug and I, who had been praised over and over again for our advocacy, were now in a position where we were being viewed as uneducated or unaccepting of Gavin’s needs. We really believed sending Gavin to daycare was going to be good for him, we thought it was the goal we were all working towards. We quickly realized we had to come up with a new plan…again.
There is no way we would ever leave Gavin without the services he needs even if it is going to be difficult for us to manage. We certainly have some challenging decisions to make in the next few days. We continue to try and balance our careers, our personal family time and Kendall’s individual time with all of Gavin’s service needs. We need to find the strength to not get lost in the discouragement, but instead appreciate the fact that he has the opportunity for these services.