Long ago in this journey I attended an autism in-service with my sister. She is a teacher and was going anyway, so she invited me to tag along. At that time, I was very confident that it would be for informational purposes only since, there was no way MY BABY could have autism.
I don't remember the presenters name but he was some sort of PhD or MD or expert. He was very good. He did a great job of explaining everything and at that time it was all new to me. I felt very smug sitting there thinking, what wonderful information to store in my brain but nope, we won't need this at all.
I was so very wrong. Even at the time of that seminar, we knew something was wrong. We had just started hearing the "A" word and my heart was so scared and so broken that my denial allowed to at attend this seminar without thinking I would ever personally need the information.
The presenter kept emphasising three things. He said that children on the spectrum need to know they are 1. Safe, 2. Loved and 3. Accepted. To me these are things all children need to know but for some reason, these three things have stuck with me almost four years later.
These three things have saved me from feeling like I was failing as a mom. On the really bad days, weeks, months.... I at least know that Carson knows he was safe, loved and accepted.
It might be hard to understand but there are still times that it hits me out of the blue and I am still in total denial. I still can't wrap my head around the fact that I have a child with autism. A child with a disability. A special needs child.
That is me. I am that mom. I am the mom that I have stared at in stores. The mom I have read about with admiration and sympathy. This was not suppose to be me. I never wanted it to be me and I still don't.
When these moments hit me it is overwhelming. My chest gets tight, I feel like I can't breathe. Strange.... I don't cry as much anymore. At times, I feel like I am all cried out. My mind goes to all the dark places it should not go. All the statistics. All the worry about his future. Even with Carson doing so well and being so high functioning the statistics are hard to hear.
Yet at the same time... I feel overwhelming love. I know in the big picture we are lucky. It could be so much worse. That does not change our life though.
I feel like we have been on a treadmill for four years. We have made great gains but I am tired. I admit it. I am really tired. And I feel guilty for being tired. I am no where close to giving up but there are days where I want to hibernate and think of anything other than autism.
There is not a day that goes by without some sort of apt, therapy, phone call, meeting, etc. To top it off anything new we add (to help him) is in addition to what we are currently doing.
The professionals say - he has to mature, let his body catch up to his brain, he is doing really well. I just want more and I want it now.
You may not realize that Jay and I protect him a great deal. We plan our whole life around him, what is good for him, what works for him, what makes him happy. There are only a few people that see the really hard days. The days where he is a mess. The days when he is very, very challenging. He is only five and there are days where he does not want to go to therapy, take his supplements or follow his diet. There are days when his autism is so obvious it smacks me in the face.
The good days fill me up and get me though the tougher ones. But the really bad days can make me feel really dark and sad.
I am not sure what it is about this time of year. Maybe the weather, being dark so early, being stuck in the house. I am just in a bit of a rut right now and feeling very overwhelmed with life. I want to know what it is like to just play. Go bumming with all my kids. Not need assistance and help. Not have this call to make or that appointment to attend. I want to know what it is like to not study everything my child eats or ingests. What it is like to not be constantly researching the newest and best. What it is like to not be worrying about how we will afford what is new and best.
So, once again, at the end of the day.... I can at least have faith in the fact that Carson knows he is safe, loved and accepted. If I do nothing else as a mother, I want all my children to know those three things. Some days it is only these three things that I feel I am able to accomplish.
Funny how something so obvious can get me though these days.