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.
Just catching up on your blog--I love it!! I can so relate--the emotional roller coaster is so intense and exhausting sometime, but the highs are even better!! You are doing great!!
ReplyDeleteShannon@SewSweetCottage