I was talking with a psychologist the other day, and she asked me, "Doesn't it seem like there are
more special needs children, now, than ever before"? It is probably true. I am so amazed at how many families, just in my neighborhood, have children with special needs.
It does bring about a sense that we aren't so extremely different from everyone else. Other families right in our same neighborhood are dealing with the same issues that we are. It helps me feel that I have someone real I can talk to, or share an "I've been through that" moment with someone on the walk to my kids' school.
I feel so lucky to be able to go online and find quick answers to burning questions about my son, or other problems that come up with him. And isn't it great that we have blogs, and internet boards that we can help each other on? We would all be so isolated without the internet, and left to feel so terribly alone. I am grateful we have more resources today than ever before.
My self-help program is going well. I've been seeing a counselor, and have picked up great tips from other support groups that I go to. One of them is setting small goals for myself.
I used to end each day feeling so defeated, because I had an overwhelming list of things that I wanted to get done, and could never get through in one single day. There was just too much that I wanted to accomplish, and things weren't prioritized correctly.
Now, I've taken a step back, and I only give myself small daily goals. When I accomplish these goals, I end up feeling triumphant. It is such a better feeling, rather than feeling I have failed. Feeling that I got done everything that I wanted to get done is so satisfying.
I like setting small goals and achieving them, because it helps me get through the tough and challenging times. When my mind is set on painting a room in my house, or organizing clutter, I am not spending endless amounts of time worrying about Andy. Changing the way you see things can really have a positive effect on your mood. It has really been helping me, and it helps the way I parent my kids.
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.
Thursday, October 30, 2014
Wednesday, October 22, 2014
Andy still has inconsolable crying episodes
Just an update on Andy's crying episodes. He still has them. I just don't write about them that often. We just took him up north on a camping weekend, two and a half hours from our house. When it came time for him to go to bed, he flipped out and cried for three hours straight.
I didn't know what was bothering him. He was crying in such a frenzy, that his pajamas became way too warm. He was covered in sweat. So, I changed him into cooler pajamas. Then I gave him some medicine, thinking he must have a headache, after screaming for over an hour. I tried holding him, then my husband laid in bed with him.
He was like a newborn infant crying out of control, and any little noise that happened would get him crying again. It was horrible, and we were too far away from home to drive back. Once he fell asleep, he stayed out for the night, which was great.
We went camping to see the fall colors, which are much more brilliant and vibrant farther north from us. The land belongs to my husband's parents/my in-law parents, and it was so beautiful! This time of year is so great for pictures. I stood in the woods for a while just watching all the leaves falling from the trees like it was snowing. It was so peaceful, and was a nice calm relaxing moment. I took a little video of it too, but it's hard to see the leaves falling.
I wasn't able to get many pictures of Andy, because he was crying soon after he was outside for a while. The weather was cold, but he was bundled up. He just didn't want to be outside, but I got a few at least.
I didn't know what was bothering him. He was crying in such a frenzy, that his pajamas became way too warm. He was covered in sweat. So, I changed him into cooler pajamas. Then I gave him some medicine, thinking he must have a headache, after screaming for over an hour. I tried holding him, then my husband laid in bed with him.
He was like a newborn infant crying out of control, and any little noise that happened would get him crying again. It was horrible, and we were too far away from home to drive back. Once he fell asleep, he stayed out for the night, which was great.
We went camping to see the fall colors, which are much more brilliant and vibrant farther north from us. The land belongs to my husband's parents/my in-law parents, and it was so beautiful! This time of year is so great for pictures. I stood in the woods for a while just watching all the leaves falling from the trees like it was snowing. It was so peaceful, and was a nice calm relaxing moment. I took a little video of it too, but it's hard to see the leaves falling.
I wasn't able to get many pictures of Andy, because he was crying soon after he was outside for a while. The weather was cold, but he was bundled up. He just didn't want to be outside, but I got a few at least.
Sunday, October 12, 2014
Andy keeps getting sick
Andy is constantly putting his fingers in his mouth. Everything goes to his lips, because he comforts himself by touching his mouth. So, this is causing Andy to take in all kinds of germs. He has only been in Kindergarten for five weeks and he has missed 5-6 days of school.
It saddens me a little bit to know that during the eight weeks he was at the Autism Center he NEVER got sick once. He never missed a single day. They kept him with one person all day, and maybe they were good about wiping his hands down. Childrens' immune systems supposedly get better over time with being exposed to lots of children, but Andy's isn't up to speed yet.
We are looking into getting a new insurance policy for just Andy that has an Autism benefit on it. We cannot sign up until mid-November, because this is when open enrollment is. Once he gets on the new insurance, we will have to have Blue Cross pre-authorize his therapy at the Autism center. After that happens, we will have to hope they can make a spot for him.
I think it will greatly benefit Andy to be back at the Autism center, and I am not sure how much school he will be able to still attend. I hope all these experiences will amount to something good for him in the end. It is so hard to know what is the best thing for him, and making the decisions is stressful.
It saddens me a little bit to know that during the eight weeks he was at the Autism Center he NEVER got sick once. He never missed a single day. They kept him with one person all day, and maybe they were good about wiping his hands down. Childrens' immune systems supposedly get better over time with being exposed to lots of children, but Andy's isn't up to speed yet.
We are looking into getting a new insurance policy for just Andy that has an Autism benefit on it. We cannot sign up until mid-November, because this is when open enrollment is. Once he gets on the new insurance, we will have to have Blue Cross pre-authorize his therapy at the Autism center. After that happens, we will have to hope they can make a spot for him.
I think it will greatly benefit Andy to be back at the Autism center, and I am not sure how much school he will be able to still attend. I hope all these experiences will amount to something good for him in the end. It is so hard to know what is the best thing for him, and making the decisions is stressful.
Tuesday, October 7, 2014
Andy's been sick
It is very difficult when Andy gets sick. He cannot tell me his throat hurts, or he isn't feeling well. He just cries and screams all day. When I notice he is refusing to eat, I usually suspect that his throat must be sore, and give him Tylenol. But until he isn't wanting to eat, I have NO clue what he is crying for. Hours and hours of inconsolable crying.
I kissed his forehead and noticed it was hot. Then I knew for sure he had a fever. When that went away, he was so irritable for several days. He had to miss many days of school. He seemed to have caught a cold after that virus was over, because the coughing started up. Today he was happy, and had no fever, so I sent him to school.
Now I have what he has. I had a scratchy throat and my stomach has felt terrible all day. Now I know how he felt, and understand why he was crying so much. It is so frustrating for both of us that he can't tell me what is wrong with him. I can't stand it. The poor guy was so miserable for days, and I didn't know what to do for him. I had to curl up in my bed for a while to feel better. I'm glad I kept bringing him back to his bed when I didn't know what to do, and he was just falling asleep. My poor son, I feel like this is so awful for him.
I kissed his forehead and noticed it was hot. Then I knew for sure he had a fever. When that went away, he was so irritable for several days. He had to miss many days of school. He seemed to have caught a cold after that virus was over, because the coughing started up. Today he was happy, and had no fever, so I sent him to school.
Now I have what he has. I had a scratchy throat and my stomach has felt terrible all day. Now I know how he felt, and understand why he was crying so much. It is so frustrating for both of us that he can't tell me what is wrong with him. I can't stand it. The poor guy was so miserable for days, and I didn't know what to do for him. I had to curl up in my bed for a while to feel better. I'm glad I kept bringing him back to his bed when I didn't know what to do, and he was just falling asleep. My poor son, I feel like this is so awful for him.
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