Friday, July 2, 2010

Being a parent of special needs children..

Our oldest daughter Paige has a global developmental delay that is primary based on her speech delay that is caused by Apraxia. She spent year 2 of life having 4 different therapists coming to our house and giving therapy to her. She currently attends an early childhood preschool run through our school district where she thrives. During the summer she's attended therapy at the school district for speech so she wouldn't have a set back in the fall. One of my best friends Ruta says that today you wouldn't even know that Paige has had all that therapy because of how she is today.

So for year 2 of Paige's life our youngest Avery had just come in the world a few months earlier. I had had a high risk pregnancy with her. At my 16 week appointment I tested 1/131 for open spinal bifida which required this advanced maternal age mom to either subject herself to an amniocentesis or a Level II ultrasound. We opted for the Level II ultrasound since it was not invasive. At our first Level II the DR and us were relieved to see that everything along her spine looked fine. There was a catch though. My amniotic fluid was measuring on the high side. This is called  Polyhydramnios which can cause congenital defects, intestinal blockage, neurological problems, preterm labor and still birth. Everything else seemed fine. It was just the high fluid that fluctuated at every appointment from the specialist to my regular OB's office. At one point my husband and I really thought the specialist wanted a new boat since I felt fine and looked fine. lol. He kept saying I would likely go into labor early and had me come in for precautionary steroid shots for her lungs in case I did go into labor.

Memorial Day of 2008 I had just sat down to eat lunch and my husband was just painting the new babies room when I felt what must be a contraction. I was still not due for another 3.5 weeks. Ha ha, maybe the Dr didn't need a new boat after all. Before midnight that night we welcomed in the world our youngest and most strong willed child Avery.

As the first year progressed I noticed some issues with Avery that she wasn't progressing like her sister had. She wasn't able to roll on one side, she wouldn't grab with her hands and she looked like she was getting a flat spot on her head from not having the ability to roll in more than one direction. So she was able to get the same therapy through the state that her sister was getting and actually graduated from that therapy after only a few months.

Our pediatrician had brought up that as a sibling of a child who has a developmental delay such as our oldest that our youngest most likely will have her own issues. We were keeping a close eye on Avery's development because of our oldest. We wanted to nip things in the bud before they got to far away from us to handle. Around her 20 month well being visit we brought up the issue of her vocabulary  not being where it should be at. Basically she wasn't making an effort to make sounds or imitate us. The pediatrician advised us after conducting his own developmental exam on her that she should go back into the state system to get therapy services.

This time around we did not have to wait long for services to start and they started within days or weeks for most of them. With our oldest we had to wait MONTHS to get a speech therapist. This time around maybe we waited a few weeks and we got one who had 2 openings a week to see her so we wouldn't have to have 2 different therapists. This time around for occupational therapy we have a weekly visit to a clinic where she plays in a gym that is like this:

This facility is amazing for a child with sensory issues. Until going here we had no idea the level of sensory issues that Avery had. Avery get's frustrated very easily. While here in a compression vest she is able to sit and focus on a task for at least 15 minutes whereas before she wouldn't even try. Her favorite things are the big blue swing and the ball pit in the back under the slide. It completely calms her down while she is in there. I wish we had known about this place when our oldest was receiving services because she would have loved it as well.

This time around I knew what to do from the get go. There is no checklist of things to get tested in the Early Intervention system but from my experience I knew I wanted her hearing tested from the start and not wait til she was almost out of the system (like we had for our oldest because nobody told us to do these things!) Her hearing test showed that after having 3 ear infections in as little as a few weeks that she most likely had fluid in her ears. Ding! Ding! Could this be the reason her speech was delayed? She had ear tubes put in in April .

Almost within a couple of days our little quiet girl became quite vocal. Not true words right away but she suddenly could respond to us telling her, "NO!" although her response usually was a look of "what?" lol. Since having the tubes and starting speech therapy we have been amazed by the spontaneous words that do come out of her mouth at times. She one time asked her speech therapist very clearly, "what are you doing?" My mouth dropped as did her therapists and his student that day. They both heard it and acknowledged it. We know she has the words, just getting them out of her is the process we are working on.

In a few months we will be taking her to the Erikson Institute in downtown Chicago for a medical diagnostic assessment for an official evaluation as to what type of delays and future we are looking at for her. I have a feeling that her issues fall more on the autism spectrum. We recognize that her issues are more sensory and she really needs outlets for these things. We shall only see.

Taking Avery to social settings can be quite difficult at times. At a recent birthday party she was fixated with playing with a tub of ice water used as a cooler for pop cans and juice boxes. It wouldn't have been so bad if 1) she wasn't dropping the cans of pop on the floor (sorry!) or 2) trying to get in the tubs of water. Redirecting her without having a meltdown is hard. It's especially hard when people don't understand what you are going through. In stores or restaurants (impossible with her) people just look at you like why can't you control your child. Well that's not necessarily it and people don't know that or can't comprehend that. My child is not the way she is because of anything that we did or did not do. It's overwhelming on the days when she has therapy and you see how she can change so much with the addition of wearing a weighted vest or compression vest. You wonder if you have the fucked up genes or does your husband or is it both of you put together that resulted in 2 delayed children. sigh.

So the next time you see a child out in public that can't communicate his or her needs or is just flat out not happy with the world that day step back for a minute and think before you roll your eyes or make a face or want to tell that parent off. You don't know what they are going through and the only thing they need from a stranger is a few words of encouragement that things will get better. My oldest daughter is proof of that and we hope the same for her sister.

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