Sunday, March 29, 2009

Our Story is a Blur

As other parents recount the day that their child was diagnosed, or that moment in time where they understood something was wrong with their child, I am amazed at their power to recall the details of the time. I don't remember those details. Every day of my life since my youngest daughter's birth has been a blur. As an infant, she did not have a sleep schedule. She would be awake all night, or for hours at a time and often, she was inconsolable. We tried different formulas after breastfeeding. Nothing changed. We even had our chiropractor adjust her and there was a short lived reprieve. Maybe a day or two of sleep for the household? It is hard to remember anything other than the general. I don't remember loving this baby like I did my first. Yes, every child is different and the feelings associated are different also. But, this was....... different. The sleepless nights turned quickly to resentment and frustration and depression. Soon, we were lost in our own woes and stumped about what the baby's problem was. So, we just dealt with it. By the time she was three, my husband and I had separated. I understand this is common with parents whose children have developmental disability, but I had no idea at the time that it was a contributor to our failed marriage. When it was time for my daughter to enter pre-kindergarten, my older daughter had been doing great in school for several years, ahead of her peers in almost every subject. Everyone loved her and she was such a sweet girl. Her baby sister was almost the polar opposite. She barely spoke, had rage-full fits, and obsessive - like behaviors. I tried to explain this to the teacher at the assessments, but I didn't have the right words, because I didn't know the terms or even what they meant yet. I, along with her dad and gramma, just thought she was a little slower to come out of her shell since her big sister could (and did) help her with everything from talking to getting dressed. We simply believed it was a matter of not needing to express herself because she had someone to do it for her. At the first 9 weeks teacher meetings, we got a note requesting a special meeting. It was at this meeting that her teacher told us of her behaviors. Many of which we were familiar with, but it was still a shock to hear them explained to us from a classroom perspective. I wanted to cry. Maybe I did. Like I said before, the details are all fuzzy and run together. This teacher was kind, and I'm so grateful that she was, because without her kindness, we may have brushed her off as being a rude and pushy know it all. But, she really loved my daughter and wanted to help. She was instrumental in getting the first IEP set up and helping us to find further help for this child. Now, 2 years later, that child is still not comfortable in school. She still has lack of control over her own body and emotions. She is still rageful. It took nearly 2 years before anyone officially called her Autistic and even now, there is so much more to learn about how this disorder works. What will her life be like? Will she grow up to be a psychotic maniac, or can she possibly adjust to her environment at some point? Some adults with autism never do, and some can't. They become statistics of the system, jailed and imprisoned for their lack of control and ability to conform. Did you know that? Did you KNOW that? I'm afraid for my daughter, and I'm afraid of her. The rates are growing in relation to others like my child. I only wish I were alone. Jenn Brockman is a single mom of 2 girls, one on the autism spectrum and one with ADHD. She writes and hosts a radio program advocating for all special needs kids at Special Needs Kids Talk Radio while running her own mineral makeup business.

2 comments:

  1. Jenn, thanks so much for sharing your story with such openness and honesty.

    ReplyDelete
  2. Jenn, I have to believe that our kids will be ok. I have to believe that.

    T.

    ReplyDelete

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