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.
Tuesday, August 23, 2011
Seeing just a hint of verbal understanding from Andy
Today, I told Andy, "lets go say night-night to daddy", and he held his hand way out and said, "da da" then open and closed his hand. While nearing the end of his bowl of food, Andy said "ahh done food", and didn't open his mouth anymore for food when I tried to feed him. So...I am hoping that these little tidbits will lead to more talking. I think he is finally trying to communicate with me verbally! Thank God! I'm worried sick over him, it is so nice to finally see some results from the speech therapy. He has been going for two months now. First once a week for a month, then twice a week for a month. We are now going to return to once a week for a while. With school starting, he is going to have a ton of weekly appointments, plus private ones. We'll see how much we can handle piling on, in terms of extra speech appointments.
Thursday, August 11, 2011
Speech revisited
I have only heard my son say a random few words one time, and then never again over the course of these 27 months. Andy started speech therapy two months ago, and I have to say it's been the most productive of all the therapies so far. he still isn't talking, but is becoming more vocal, and is making more attempts to communicate with me.
Today my son cried and murmured to my husband what sounded like "I want mama". It finally makes me feel like I am doing something right.
Today my son cried and murmured to my husband what sounded like "I want mama". It finally makes me feel like I am doing something right.
Sunday, August 7, 2011
Confused about more children or not
I was very sure that I didn't want to have any more kids, but lately I have been having second thoughts. I keep thinking if I have another one, maybe they will be normal like my daughter. My son has brain abnormalities for unknown reasons. Nothing genetic has been found. I've been seeing other mothers with special needs kids having babies, and it just makes me think, "am I really done"?
I won't know for another couple years I guess. If Andy starts to walk and talk, I could change my mind. If he doesn't, I will probably close the doors on it for good. I just can't see having an infant around, when I've got to still carry him around. And besides, I HATE being pregnant so much. It is terrible miserable torture for me, which makes me think I am out of my mind for even considering such a thought.
I think it comes down to regret, right now. Will I regret not having any more. If I had another one, in an even worse scenario than Andy, I know I would regret that too. I probably should just count my blessings and be happy with what I have, I guess...
I won't know for another couple years I guess. If Andy starts to walk and talk, I could change my mind. If he doesn't, I will probably close the doors on it for good. I just can't see having an infant around, when I've got to still carry him around. And besides, I HATE being pregnant so much. It is terrible miserable torture for me, which makes me think I am out of my mind for even considering such a thought.
I think it comes down to regret, right now. Will I regret not having any more. If I had another one, in an even worse scenario than Andy, I know I would regret that too. I probably should just count my blessings and be happy with what I have, I guess...
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