You may have noticed that LTL has been underground these past few months. Like everyone, I have been consumed and somewhat distraught by the many issues plaguing our society. Too much clutter in my brain has prevented me from digging into my autism mom heart and sharing. Fear not….I think I have found something meaningful (I hope) to write about. If you enjoy my blogs I thank you for your patience. If you don’t…….well then you don’t.

I cycled through many emotions during the beginning of the Covid-19 crisis. I painted many walls and scoured FB market place to adopt and rehab unwanted furniture. I needed to do something to center myself because the scariest thing I have learned throughout this disaster is that my son is completely dependent on “the system” for socialization. I guess I already knew after all these lonely years how critical the system was for him, but when school came to such an abrupt stop it hit me again like a ton of bricks. When things started to open up last month it was painful for me to drive past parks and fields watching teens play various group sports with their buddies. Brian needs adult facilitation to do this and that is why school and camps are so vital to his development. His siblings are home so he is not lacking for attention, but that is not the same as interaction with typical peers his age.

For Brian and so many other kids struggling with a disability, the only way they get interaction with typical peers is through the school setting. They are not driving around with friends or meeting them in the park or keeping up with them on social media. Outside the walls of the school, they are essentially isolated to their family unit. It is impossible to track all the benefits disabled kids get from consistent interaction with typical peers. Behavior modeling and just feeling a part of things are two of the most obvious benefits. But outside the school, these opportunities essentially evaporate.

Perhaps the most important way Brian is reliant on the system is the daily structure that the school day provides. It is seven hours of being active and engaged and learning. That simply cannot be even remotely replicated at home. Brian essentially has been deprived of the structure that allows him to thrive, develop and learn. That is the situation we are faced with perhaps for another entire school year. I cannot come to terms with that.

One of the few bright spots for Brian since school has closed has been weekly french fry runs with his cousin Ben. When school was in session, Ben was coming to Brian’s classroom every day to read with him. His support and interaction with Brian meant the world to us. Perhaps the best part is that we never asked Ben to do this. When kids involve themselves with special needs children on their own accord the feeling the parent gets is probably the same feeling for a football parent when their son scores a touchdown on the football field. It’s just that awesome! Ben graduated in June and unfortunately the reading sessions won’t happen anymore. That is a very special memory and I am positive Brian has stored it in his uncanny memory forever. I know we surely will never forget it. I remember saying to Ben’s mom earlier in the school year how sad I felt about that school relationship ending, but I was not at all prepared for it to end in March. Given their age difference, this was the one and only school year Ben and Brian were in the same building, and it was amazing. To say Ben stepped up would be an understatement. And after school shut down, the french fry runs were the only thing that motivated Brian to leave the house because he was confused and missing his routine; even now he struggles to go outside. “Best cousin team” certainly applies here with Ben and Brian or #BL2. My hope in the grand scheme of things is that Ben’s initiative to be a part of Brian’s day was noticed by other students, even just a handful, and made them a little curious about their own interaction with different students. One never knows what they are missing in their life until they try and branch out.

Ben is set to start a new chapter at Penn State and Brian is desperately wanting and needing to start his sophomore year in person. How this plays out in the next few weeks is anybody’s guess. Lives will be negatively impacted either way I fear. With all the conflicting information going around all I can do is trust. Trust that this medical crisis has an end and trust that we will find a way forward that will not cause long-term damage to the development of our kids. I pray if school is indeed closed that our Governor and his team are thinking about our special needs population and how to creatively meet their needs because learning life skills online is not appropriate and not at all possible. I’ve always disliked my son being labeled a “life skills” student, but that is the term the state uses to identify him hence what the school district uses. Personally, I think we can do better. The title “life skills” does reflect how important the non-academic aspects of the school day are for “life skills” kids, and the on-line teaching methods put into place once schools closed do nothing to address this reality. It really scares me what the long term impact may be.

This blog is not very streamlined and I’m throwing a lot on the table, I know. But one thought kept leading to another and somehow intertwined. I truly wish safety and peace to all and I pray for our decision makers. So much is on the line.

Be well my friends.