So many people have said to me that I am doing so well, that it is amazing how I can cope with everything that is happening in our family. They say how strong I am and how they don’t think they could do what I need to do every day. I'm glad that I come across that way, but since Matthew was young, what I have felt inside, has been quite the opposite.
Where I was then…
1. Emotionally spent everyday
2. Being upset with myself
3. Mad/annoyed at Matthew and/or the situation
1. Emotionally spent every day....One of the biggest things with Matthew is his communication. He expects everyone around him to be mind readers. He doesn't get (even now at times) that he needs to approach people and express what his needs or wants are. He started throwing fits, lots of them! If he wanted a banana, for example, he would go into the kitchen and throw himself on the floor and start crying. I would go up to him and say, "What? What is wrong what do you want?" And then the guessing game would begin, a drink? a cracker? a sandwich? a drink? When we finally got to the right thing he wanted he would stop crying and that was a confirmation to us that that was what he wanted. This was how it was for everything: watching TV, going outside, hungry, you name it. The pattern would be: fit, guessing game, and then fits stops when we got it right. This would happen 20 or more times a day. So my nerves were usually shot by the end of the day. I will share more about our road to helping Matthew communicate in a different post.
2. Being upset with myself....I found myself crying a lot, wondering why this was happening to me? Why was I being "cursed" with such a trial? When were answers going to come? How was I going to help Matthew? I expected perfection in myself, so when I would start having any negative thoughts, and not just accept everything how it was, I would start thinking awful things about myself. "You are a terrible mother!" "How could you wish that?" "Do you know how many people are out there that wish they had children and can't!" "You are so ungrateful!" "Matthew isn't that bad, other people have way worse lives than you!" And so on and so on. As you can imagine I was feeling pretty darn crappy about myself, which led to depression. Of course, who wouldn't be with a constant barrage of negative thoughts in my mind all the time? What an awful record to be repeating in your head all day long.
3. Mad/annoyed at Matthew and/or the situation...When he was young, I was also always comparing Matthew to his older brother and sister or older cousins, or even national averages. I found myself being annoyed that he couldn't walk up stairs like he "should" have, that he couldn't get a puzzle piece that I asked him to get, that he couldn’t ask for something, ANYTHING, instead of throwing himself on the ground for a new round of mind-reader guessing games. Then one day during his EI (Early Intervention) speech therapy he was working on a shape sorter puzzle thing. He completed the puzzle. He was so happy with himself and he started clapping. Then he looked up to see my reaction and that was when I realized what I had been doing; I had been so distracted with what he couldn't do and annoyed that he wasn't "normal" that I was missing out on his achievements. He was Matthew! And that was the first time that HE was able to do that puzzle! It didn't matter that Emma or Jacob could do the puzzle at eight months old, it didn't matter that it had taken him many attempts to get it, what mattered was that HE did it! After that I started celebrating and getting excited for him in all of his achievements no matter how small. And I started loving him for who he was, instead of being mad or annoyed that he wasn't what I thought he should be. It was a major breakthrough for me. Once I embraced that, I started charging full speed ahead, whatever it took to get Matthew the help he needed. He had a right to have the best life possible.
Where I am now…
What I wanted to share in this post is my feelings and how I came to accept some very basic things that may seem obvious, but have been extremely difficult to learn and even harder to accept. I know that Matthew is different. I understand that Autism changes the way he experiences every aspect of life. I also know that I don’t fully understand what is happening in his mind, and I may never get to that point. I need to accept, sometimes on a daily basis, that the limitations he struggles with will probably last for his entire mortal life.
However, I can honestly say that I am grateful that Matthew is in our family. I am excited for him and for his accomplishments because HE is doing them. I am still pretty emotionally spent every day, but I am coming to accept that for what it is (having 4 kids, 2 of which are special needs). I am not beating myself up as much (a work in progress), I am giving myself some slack. It has definitely been rough, but I am grateful that I can say that I have come out the better for these difficult situations in life.