Our Every Day

Survival mode. It's something that I know a lot of special needs parents live in on a daily basis - I am counted among that number. As your kids get older and out of toddler and preschool age, I think the expectation is that they are a little more self-sufficient. A little more independent. I see these skills emerging in Jovie - skills I have never really seen in Grayson and sometimes see in Easton who is affected more mildly by his version of autism. I look back to when I was Grayson's age, and I was able to do everything that Grayson and Easton even to some extent - cannot do. I could easily put my own socks and shoes on for starters. It's daunting to know that this is not something Grayson will ever outgrow. He'll change and develop as he gets older, but he will always be behind in very significant ways. He will always need constant care. He will always need to live with us or with a caregiver when we are too old to care for him. It's a fact.  His baby, toddler a...

Sometimes I focus a lot on what's going wrong in our little world. It's pretty much just our real life because if something wrong is going to occur, it will - and the timing will be terrible. Murphy's law and all that. But every once in a while, things are really great. The thing about autism parenting is that we experience a lot of silver linings - we find a lot of redemptive moments in the really hard day-to-day. An example: A few weeks ago, we missed the bus for school. It was crazy trying to get us all out the door, and I just knew we weren't going to make it to the bus so - I had to take Grayson to school that day. His para had been on vacation and he hadn't seen her since before Christmas. It was her first day back. When I took Grayson up to the door of the school, she was waiting for him. He was so thrilled to see her - I will never forget the look on his face, or the way she said, "I missed you!" She was just as excited to see him. He pressed his f...

While tidying up my house today, I decided to straighten the plates in one of the upper cabinets. I took them all out, wiped the cabinet down, and then placed them back in - in rainbow order of course. I took a second to look at those place settings and felt a tinge of sadness.  Before Grayson was diagnosed with autism and his behaviors started to be as severe as they are now, we often had people at our house. We really enjoy having company, and it's something that we miss now. Those plates were regularly rotated through and used. For years - since we have moved into this house - we have had very few people over. Well, that's not true - we have had more than our fair share of caseworkers, representatives from the local board of DD, behavioral therapists and providers, in our home, but that's been pretty much it for the past four years. Friends, very very very few. Family? Pretty much just the grandparents. Sometimes our neighbors will pop by, and they are always so welcomed...