Let Me Into Your World...

In the beginning, everything seemed great. Boys thriving, little issues here and there. Shoot, who doesn't have little issues... sniffle here, cough there. Then it begins to become a little more. Walking on their toes, fingers flicking or flapping in a type of rhythm, delayed speech, spinning wheels on toys, no direct eye contact. These are just a few of the things a parent may notice early on. Alone, they are not necessarily a bad thing, but when combined... they start to create a picture, a picture puzzle.

I think that the hardest thing for a parent, is the loss of a child. Next on the list (for me) would be to find out your child my child has a fatal disease. Then would come a serious illness, disease or disorder. I'm referring to the ones that can be managed, maintained or dealt with in ways which help improve the quality of life for the child. For us, having twins diagnosed with autism was certainly a shock in it's own right, however, we began (like most parents) putting the clues together long before our boys were diagnosed.

The best way for me to explain the regression of autism is to loosely compare it to Alzheimer's. I've watched someone with Alzheimer's, completely trapped in time for a bit, forget who their loved ones were who came to visit, forget they couldn't do something they could before, watched them lose functions they once had. You become someone they remember for a moment, and it's gone. They remember you, or someone from their past that you remind them of. (The list goes on, but I think you understand.) As a parent with children who have autism, watching Daniel regress was difficult, because there was nothing we could do. One day he knew so many things, and the next day (virtually) he looked confused when we tried to get him to respond to those things. We could see in his eyes that he didn't understand what was going on, that the information was still there, but now we had to find a new way to get it out.

Anthony regressed later, and it was actually harder to watch. He didn't have an "overnight" regression as Daniel had, we watched things just slip away. It made it harder and took longer to get him the proper diagnosis. Anthony would be counting the stairs one day and look at you like you were crazy for asking him to count them the next. Several times we were told it had to be something other than autism, but, when everything was said and done, that was his diagnosis too. The only difference was the journey, but the end result was the same... Autism Spectrum Disorder.

Those I've talked to either knew something was wrong immediately, or watched as the child they knew changed right in front of them. We realized that it doesn't matter how things happen, ASD will affect everyone in the family. We all have to get to the place where our kiddos let us in. For me, being a stay at home mom, the boys were around me 24/7. They knew I was there for them to come to, they interacted with me as much as they needed to. They even tolerated me when I inserted myself into what they were doing. It was harder for Steve I think, Daniel really had not gone to him on a regular basis before he regressed, he would always come to me. Then, Daniel chose me over virtually every one else. It would be almost a year later before Daniel would "let him into his world". Anthony doesn't have as extreme a form of autism, but it still caused him to close out others, and took a bit to allow people "into his world" also.

Every day holds it's challenges, accomplishments and failures. Every day has it's tears and smiles. Every day is a chance to make headway into the gap that exists between their world and ours. All we can do is move forward, forever asking them to... Let me into your world...

From a mother's heart. Have a wonderful week.