5/4/09

So there are obviously many reasons it's hard to be the mom of a child with autism, I'm sure I've discussed most of them in this blog at some point but this weekend I encountered one I haven't written about yet. The other day I wrote about how the speech path said that I just "get it"... and that Tyler is in great hands. Carrie used to say the same thing, she'd comment at how well I can read Tyler and anticipate his needs, frustration level, etc. I am very thankful for that, I obviiously want to help as much as possible. I have in the past 2 years gained an incredible amount of knowledge as to how to best help Tyler on all fronts, I'm so happy I have that knowledge and the fundamentals necessary to then apply them to different situatinos or even new scenarios. However, I do not always have the answer. If something is wrong or something abnormal happens, i do not always have the answer as to why it happend.

We took the boys to the park on Sunday, Grandma was also with us. As we are pulling into the park, Tyler gets incredibly upset and starts crying, sobbing actually. Everyone, including Ben starts asking why Tyler is crying. I don't know. I racked my brain to try to remember what, if anything, happend last time we were at the park that would trigger this response from him, and I couldn't think of anything. Everyone is looking to me for the answer, I don't have it. No one said, Melissa what do you think is wrong with Tyler, but all eyes kept turning to me when they were making comments about it. I was being really quiet cause 1) it upsets me when Tyler is upset and 2) I was trying to think about what happend last time and 3) I was trying to figure out my game plan for Tyler to help him get through whatever was bothering him and get him into the park. So I just couldn't do/say antying to make everyone else feel better about it all at that time so I just was quiet. When we parked I asked that everyone get out of the car and just leave me alone with Tyler who was still sobbing, poor guy. They all got out of the car and I got out one of Tyler's leapster books, between sobs he seemed intersted. i knew I needed to distract him from whatever was upsetting him and then I could attempt the next steps. So I slowly got him out of the car, every few feet he'd sob so I sat in a park bench outside of the park (again another classic autism photo that would have been). I was actually glad he was a bit stimmy with the book as I knew that he was soothing himself and getting happier. At one point dad came over to say hi and he sat down next to us. I said, are you here to make Tyler feel better or are you here to make yourself feel better (tyler was engrossed in his book). Steve was great, he goes, good point. I said Ben deserves to play with his dad right now, Tyler and I are fine. As soon as I was convinced that Tyler was distracted enough to not start sobbing if we moved, we said all done book and put the book int eh car and then went for a walk, I walked away from teh park, into the grass area and we played stop and go, fast and slow hoping to get some giggles. I took him to some nearby bleachers to climb. Slolwy but sureily I walked to another side of the fence from teh entrancxe so he could peek over and look into the park, before entering I wanted him to see the park to see if that would illicit that same upset reasponse, he did fine. So i walked him around to the back of the park, hoping that us entering on the opposite side of normal would break whatever stimulus was upsetting him and it worked. So in summary, one of hte hardest things about being a mom of a child with autism is how much everyone looks at you to for answers as to why something is happening and to say/do somethign to make everyone feel better about it. Sometimes it's all I can do to make Tyler and I feel better about it. I just don't have all the answers, but believe me I wish I did!

Which then brings me to my next complaint... so once again there were uninvolved parents at the park. One little boy kept wanting to swing and his parents were walking around on their cell phones or sitting on the bench. he kept asking Steve to help him swing. It was so sad. the kid was following his dad arounds aying dad, I want to swing, dad I want to... but dad was ignoring him. I just wanted to shake that parent. It took my kid at least 15 minutes just to enter the park and you have a healthy child who wants to play with you and you are walking around on your cell phone ignoring him. It frustrates me to no end....especially when those things happen after we have an episode of sorts that make me realize just how different our lives are than so many others. I long for the day that it only takes one parent to take the kdis to the park. There is no way Ben would have been able to make it through all the things I needed to do to help Tyler without him also melting down. He wouldn't understand why he had to wait and he wouldnt' understand why Tyler was getting all that attentino and he would start melting down to get it too. So one day... one day we will, that's what we do what we do for Ty, so one day we can.

I had another dream that Tyler was talking last night, I can't explain how wonderful they are. Last night was him saying I love you. It feels so good I dont' think I ever wanna wake up from those dreams.