It had to end sometime.

I have been on Cloud 9 since Bryan came back from Sea World. We learned more about the trip and he seemed to have managed well. He even tried to push his aide away during mealtimes so he could eat with his friends. ALL GOOD. Today is a quintessential day in the life of a family with autism. Weekend was nice, Bryan seemed very proud of himself from his trip. He “did a great job” at speech and soccer. He actually slept late on Sunday. I left for work at my regular time this morning. Earl takes the boys and I usually check in with him after to see how things went. He told me Bryan was crying a lot. He cries every Monday morning and truthfully although this does pierce my heart a little, I know he will be fine by 8:15 so I am not really sidetracked by this  news.

Our sitter called me at 2:15, she had just gotten the boys off the bus and realized she forgot her house key. Rather than driving 40 mins roundtrip I asked her to come get the key from me at the office. Knowing how much the kids love the vending machines at my office, I got them each a snack and with that ammunition, I headed downstairs to meet the 3 of them. Bryan was a wreck. He was screaming and crying that I should come home by 5 and that he wanted to stay at my office. It was ugly. He was pinching and I was worried. Worried he might hurt Jason or me, and to be totally candid, I was worried some work people might see. I am not embarrassed about the autism, because if you know me, you know Bryan  has autism,  I just don’t really want to feel those looks, the stares and the pity. The pity and the judgment are the absolute worst. I got him in the car and went back to work. The giant balloon of sea world happiness is having a slow leak. About an hour or so later, Earl instant messaged to me that Jason called him that Bryan was out of control. Two steps forward and one step back, always. Always. Someone posted an article on facebook today about having a child with autism “wrecks your life”. It was an article from the UK and this person was observing friends with their child and all of the issues they face, from failed careers, fear of having another child, aggression, extended family pressure, financial pressure, etc. The writer explored the concept of a test for autism as a precursor for terminating a pregnancy. He was posing this question to the audience. This is heavy. I can’t even conceptualize the idea of not having Bryan if we knew he would have autism. We didn’t even really know what autism was before him, it wasn’t even on our radar of things to be concerned about when having a baby. Colic, that was my fear. Oh man was I naive back then. But if we knew he would have had Downs we might have had to really consider what that would mean. That was what I was “afraid of” as I got my amnio results. Now we know a boy who has Downs in our area and I love that kid; he is loving and sweet. He has a job and is doing pretty well. People have chimed in on that article with all kinds of comments. A few were very honest, saying that they would still want to have their child, but wish things were easier and that they are not grateful for the disorder but still love their kid. Isn’t that what you sign up for as a parent, unconditional love? It’s hard and I guess that’s the thing.


6 thoughts on “It had to end sometime.

  1. I can so empathize with the one step forward, two steps back. Even with all the issues, difficulties and rages that come with my son’s Bi Polar, I would not change anything in the past. I would do it all over, even the ugly divorce from his father when my son was 2 because I do have unconditional love for my son. However, that does not mean I don’t often think of what life would be like if my son was”normal”, if there is such a thing. We had a very rough home therapy session last night where he was almost self abusive, but by the end of the night he was happy and wanted to play a came and sit with me. The cycles he goes through are exhausting on all of us. One day at a time is the best any of us can do and you are dong great with that! You are a great mom who is doing the best she can and no one knows what it is like to live in our world with children with disabilities, so the stares and judgements are irrelevant, but I know they still bother us. Hang in there, today is a new day and maybe you will get one step ahead today!

    1. Hi Kathleen, I ‘m sorry to hear you had a rough time with therapy, but I know sometimes those bad things indicate something good is coming, which it did when you got home. We are all in this together!!! Thanks for your comments.

  2. be proud of yourself, Jane. I admire your honesty. What you forge through on a daily basis isn’t even a quarter of what neurotypical families have to deal with. my son, while not autistic has a variety of issues (sensory integration, reactive attachment disorder (mild) and social defensiveness) and I have forced myself to breathe in those whiffs of roses because the daily struggle can be so overwhelming. And, the days when he is off at school and I have time to re-coup make me such a better mother to handle it all. There are days when I am sad and after I heal, I can not wait to see that little dickens run up to my car shouting, Mommy!

    I love the blog. Wendy

    1. Thanks Wendy. I do really try to approach all of this with a positive spin, because there is so much to be positive about. There truly is nothing better than to hear Mommy from some small person that loves you. Have a great day.

  3. It’s much easier for me to comment than it is to listen to my own advise (ha). But, for what it’s worth, here’s my two cents. You don’t have to leave Cloud 9! Push aside all those “what ifs” and deep thoughts about pregnancy and fears. Choose the positives. Maybe those stares of judgement and pity are really stares of awe and admiration! Maybe you were chosen to be the mother of a child with a disability because God knew you could do it! I believe you have His awe and admiration and that’s the only stare that counts 🙂

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