I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Sunday, June 19, 2011
How much therapy does he really need?
We just had a two week break from therapy visits due to a change in insurance, and I have to admit, it was so nice. We are currently going once a week for physical therapy and speech therapy, and I wonder if PT could be cut down to twice a month. I work with him every day, and soak up everything they tell me, then put it to use. His therapy is currently a 30 minute drive, and by the time we get there Andy is melting down. DVDs arent working, music, toys, he's pissed when we get there. The facility that is ten minutes from us has a long waiting list right now, so that's why we are venturing out further. I am just not sure, but my gut feeling is that Andy would still benefit from going in twice a month. All the visits are just taking their toll on me.
Saturday, June 11, 2011
Bouncing around the stages of grief
I am most definitely in the grieving process. I can see that now. When I first heard that when you have a child with special needs, you need to let yourself grieve, I thought "what would I be grieving"? For me, I am grieving the loss of a normally functioning child, because realistically that is what I thought I had. Then, all that was taken from me when the normal developmental milestones were not occurring. I was in the denial stage for a few months, probably from when he was 9 months old, until he was 14 months old. Because he was 11 months old when I took him tom the neurologist, so I somewhat was accepting that something was wrong. At 18 months old, scheduling the MRI showed the denial was over. The anger lasted for a year, and I still tend to revisit the anger. The depression is still hanging around, although some days I am feeling very accepting of everything in my and Andy's life.
Today I feel accepting of the fact that my son is very impaired, and will require special schooling. When I give up the hope that he will attend a normal school, it seems to help me be less sad. Constantly hoping for things that are way out of reach, is just so painful and torturous. Telling myself that Andy will be in a special school, and let's see how much he can learn, seems to work the best. Giving up the hope that he is going to sit up or crawl, and just putting him through the motions of these activities, and hoping that maybe he will just pick up a tiny fraction of what his brain needs to do these things is what I am focusing on. Not the big picture. It's too self defeating.
Some hours of the day, accepting, some hours or minutes of sadness. It's okay.
Today I feel accepting of the fact that my son is very impaired, and will require special schooling. When I give up the hope that he will attend a normal school, it seems to help me be less sad. Constantly hoping for things that are way out of reach, is just so painful and torturous. Telling myself that Andy will be in a special school, and let's see how much he can learn, seems to work the best. Giving up the hope that he is going to sit up or crawl, and just putting him through the motions of these activities, and hoping that maybe he will just pick up a tiny fraction of what his brain needs to do these things is what I am focusing on. Not the big picture. It's too self defeating.
Some hours of the day, accepting, some hours or minutes of sadness. It's okay.
Sunday, June 5, 2011
Too much
The great feeling I had from the mom support group has faded, although I am thankful for Andrew's current abilities. The fact that Andy couldn't walk or crawl was muffled out by the other mom's whose children couldn't swallow food, or maintain a sitting position. It actually made me feel proud of him for what he can do. I think that is what made me feel the most peaceful. And hearing about the other mom's similar struggles.
Today, I am going to bed early and hoping for a better day tomorrow. There is simply too much laundry, too much yard work, too much housework, my kids need too much attention, my poor husband has to work way too much, and I am coming down with a sore throat and fever. My 4 year-old daughter, formerly my sweet angel, now a little devil is driving me crazy. Way too sassy, too much attitude, too picky, too impatient, oh God help me. She is way worse than Andy at this point, in terms of stressing me out.
Time for bed, time for bed.
Today, I am going to bed early and hoping for a better day tomorrow. There is simply too much laundry, too much yard work, too much housework, my kids need too much attention, my poor husband has to work way too much, and I am coming down with a sore throat and fever. My 4 year-old daughter, formerly my sweet angel, now a little devil is driving me crazy. Way too sassy, too much attitude, too picky, too impatient, oh God help me. She is way worse than Andy at this point, in terms of stressing me out.
Time for bed, time for bed.
Wednesday, June 1, 2011
At peace
I went to a moms support group tonight at my sons physiatrists office. It was my first time going. After having gone, I am feeling very at peace now. Just talking with the other women in person that understand how exhausting it is felt very freeing. I came home feeling like I fully accept whatever may lie ahead, and am happy with the way my family is. We all love each other so much, and are grateful to have each other.
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