More. That is the word that keeps coming to mind. I've been thinking about what it means to be the mother of a special needs child. More. I feel like I have perspective because I am simultaneously parenting two boys and while we are a family, the parenting of these boys often seems to be running on parallel planes. We are so often together as a family, but it's different. It's hard to explain.
The other day I was talking to a friend of mine, who recently learned the diagnosis of her beautiful child. It is not on the autism spectrum, but a life long life changing diagnosis. She had just had a walker delivered to her house from a PT to help her child. She said to me,"that's not supposed to be in my house, it should be in someone elses". That keeps running through my head. Sometimes it's hard for us to believe that these are the things we need to deal with on a daily basis. A feeling of how did I get here? Having a child with special needs can at times make you need to dig down deep to find more strength. When I'm talking to teams of professionals who have gathered to talk about my child, sometimes it will overwhelm me to think that all of these people are gathered to talk about my "little" boy. The boy who has had obstacles to overcome since the day he was born. It could be much much worse, this I know, but sometimes I need more strength. The decisions that need to be made for such a simple thing as riding your bike around the block take more planning and more thought than with my other child. You worry more, you plan more, you cry more and the joys, when they come are stronger and more overwhelming. This is not saying that he is loved more. But it is different. My sweet sweet Zachary is such a love, he is just taking a different path than his brother.
I am ALWAYS told, "you have so much patience, much more than I could have". I've said it a million times. I was probably one of the least patient people around. You are not born with a pot of patience to draw from that is one size, with some people having more than others. It is constantly refilled and rejuvenated. I remember the exact moment that I realized that something needed to change within ME. Not within my child who was screaming and hitting and having a complete breakdown. Daniel was maybe 4 1/2 and Zachary 1 1/2. Daniel and I were literally rolling around on the floor. I was trying to restrain him from going after Zachary and he pushed me backwards. I was holding onto Daniel and squatting down so when he got leverage on me we were rolling around his room trying to gain control of each other. I was trying to protect him from hurting himself or his brother. It was a low. I was at a loss. It was a scene that I can picture like I was looking down from above at all of us and it was at that moment that I realized that if I didn't change how I reacted to these situations they would never ever change. I needed to find more patience, more calmness, more strength and maybe even more love. I think I've found it within myself. I'm not perfect and sometimes I still need to walk away to calm myself down to find it again. The reward is that with all of the lows the highs are so very very satisfying. It can be more glorious, more rewarding, and more satisfying. I am a truly blessed mother and wife. My wish is that all of the mother's out there, whether they are the parents of children with special needs or not are able to find all of the things that I have. While at times it can be exhausting, defeating, and maddening, it can also be more, so much much more. I am so very lucky to have the family that I do. Happy Mother's Day.
Mastering the Obvious in Autism Science - At this years IMFAR autism science conference I saw several presentations on seemingly obvious topics. For example, one study (DaPaz, University of Cal...
1 week ago