I have said it a thousand times, there is no way we could get through this life without Jac's support system. His needs are quite extensive. Our support includes his primary provider, his doctors and nurses, his teachers, his therapists, and of course, many family members who love him unconditionally.
This summer has definitely been a challenging one, with more seizures, more behavior outbursts from his autism, and all the lovely changes in his body from good ol’ puberty. You know what kind of village you have when you are faced with challenges and rough times.
Here's a recap of just a few days of his village life.
Monday, Jac decided to throw the ottoman in the living room, then proceeded to throw himself onto the floor crouched over like a potato. He refused to do anything but yell as if someone was hurting him. This was all before school. In the afternoon, I received texts from his teacher saying he was "off” and was having a bad day. I had a sobbing fit.
Jac had therapy that afternoon so I drove straight to his therapy clinic, where they had already finished his treatment for the day. They were able to be my shoulder as I cried and cried. And then, they reported Jac had actually done better.
Tuesday, I got a text that Jac was having his worst day ever at school and was smashing popsicles all over the floor. Now the teacher was crying. Luckily, I had finished my crying spell from the day before, was able to console this fellow villager into believing that it wasn't her, it was Jac having a hard time.
Wednesday, we went to the doctor only to find out that Jac had a nasty ear infection, was in pain, and having more seizures as well. He wasn’t regressing; he was in pain.
So, this child had just about driven everyone to tears, not from anger but from love and frustration for not knowing what could be causing him to act this way.
You forget about those who are on this journey with you and how much they are involved and love and care for your kids, just like you do. Therapists, doctors, nurses, and teachers who let me cry on their shoulder and help reassure me that “this too shall pass” is what saves Jac and me.
After all, it doesn't just take one family to help care for my child. It takes a village!
Parenting Children with Disabilities has great information to help parents get through difficult challenges.
After making the difficult decision to medicate your child, with time and on occasions, old symptoms return or new ones appear. Once again, you’re faced with what felt like an already-made decision - to medicate higher or more, or not.