Although I feel that my time spent in the motherhood realm has been unfairly tough, there are some things I am grateful for. I am extremely grateful that Andy takes nice long naps. They really help to get him out of a bad mood, and give me the break I need between morning and afternoon. I am also grateful that he is a really good sleeper at night. He has slept through the night since he was 9 months old (when I stopped nursing). Ever since, he always sleeps 12 hours a night, unless he has a fever and needs medicine. He is also an excellent eater. He will eat anything, and loves food. He has no problem swallowing or chewing, and I am SO grateful.
I am also grateful that he is able to give us smiles and giggles, and can show us affection. It helps us to know that he loves us, and is happy to be with us.
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.
Friday, October 26, 2012
Wednesday, October 17, 2012
Sample letter for a one-on-one assistant for special needs class
I recently wrote a letter to the special needs director at my son's school. He is in a special needs preschool class. I wouldn't consider it an SXI (severely multiply impaired) room, because all of the children in the classroom are able to walk. Some of the kids can talk. Some of the kids can let you know what they want through gesturing. This center does not have a lot of the equipment my son needs, but I feel they are doing well with my son Andy so far.
The letter I wrote was to request that a one-on-one assistant be hired just for my son during his class time. Feel free to copy this letter and use it for your own child. The special needs director says that she will consider my request, and would like to meet with me this week.
Sample letter to petition your school for a one-on-one assistant for your child:
The letter I wrote was to request that a one-on-one assistant be hired just for my son during his class time. Feel free to copy this letter and use it for your own child. The special needs director says that she will consider my request, and would like to meet with me this week.
Sample letter to petition your school for a one-on-one assistant for your child:
October 8, 2012
From sender of letter
Mother of Andrew
Address
City, state, zip
Ms. Special needs director
Director of
Special Education
address
City, state, zip
Dear Ms. special needs director,
After
observing and actively participating with my son Andrew's classroom/XXX teacher's class for six weeks at the XXX School, I feel he needs a one-on-one assistant
to help him while at school. The assistant would remain with Andy and aid in
his personal safety around the other children, and help him to stand while engaged
in activities. Andrew is quite unable to do a whole lot for himself, and lacks
protective skills.
Andrew
requires assistance getting in and out of his wheelchair, getting in and out of
seating for activities, and needs to be fed at snack time. Andrew also needs to
be given the opportunity to stand in the classroom for short periods of time. These
activities would include standing at activity tables where children explore and
scoop through things like rice or corn. Andrew can stand with the assistance of
an aid, and needs to be watched so that he doesn’t fall over. Having Andrew
stand for small periods of time helps improve his brain functioning and
promotes bone density and bone growth.
Furthermore,
he needs to be actively watched while playing with other children on the floor
to keep the children from stepping on his hands, legs, or climbing on him. He
also needs to be monitored, so that he won’t bang his head on the floor, due to
falling from seating, or falling backwards from a seated position on the floor,
as he lacks protective measures for falling. One of Andrew’s doctors, XXXXX,D.O., suggested my pursuit of a full-time assistant for him at school.
I
would like to further add that Andrew’s teacher, XXXXX, and the
assistants in the classroom are doing a wonderful job. I do not feel that
Andrew would be neglected, but I do feel he needs a lot more assistance than
the other children in the classroom do. I am most worried of him being harmed,
if a staff member can’t get to him fast enough, when another child may be
hurting him accidentally. I have been unable to leave him at school alone, for
fear that he will get hurt. I also stay at the school with him, because I would
like him to have opportunities to be in standing positions, which would require
someone at his full attention that could not assist with other children.
Please
consider hiring an assistant to work with Andrew one-on-one while he attends
school. Please also let me know if you can think of another solution to this
issue. Feel free to contact me at XXX-XXX-XXXX, or by email at XXXXXXX.
Thanks
for your consideration,
Amy
H
Friday, October 5, 2012
House building progress
The second story of our house is being built. Along with the garage. Right now we are at the 10 week mark. The first several weeks were spent waiting for permits to be pulled, and watching the basement get framed and poured.
The basement footings were poured at the five week mark. We signed all papers to start the house in mid-July, and the footings were done August 24th. The basement forms were put in and poured September 2nd. This is going to be a walkout basement. We are anxious for the roof to be put on, so that everything won't be getting soaked by fall rains. Fortunately, the weather has been very favorable for building in the last few weeks.
Rough Patches
We've been suffering through several rough patches with Andy lately. He has a swollen gum around one of his upper molars that I've been treating with Orajel. The dentist says the teeth need time to break through all the way. I've been giving him soft foods, but when it is time to eat, he gets really upset. I may have to consult a third dentist, to ask about his gum. I try to floss in there, but there doesn't seem to be any space to floss due to the crying.
Gabby can't stand Andy's crying, and neither can I. She is only five, and quite often feels that Andy is the only one that I care about. In her own words. It sucks. Going through all this truly sucks.
I try to stay distracted with cleaning and de-cluttering the house in preparation of our move this winter. Andy doesn't entertain himself for long though, and when he gets bored he gets really pissed off.
I try to tell myself that other parents of normal children have to be going through the same ups and downs as me, but it often seems that we are in more patches of frustration and anger than most.
Thursday, October 4, 2012
I need to petition my sons school for more help
I have been staying at my sons school on a daily basis with him. I think the teacher and parapros are doing an excellent job. However, their hands are very full with the twelve children in the class. I still don't feel comfortable leaving him there without me. He easily gets stepped on by the other kids, and has to be picked up and moved when he moves into dangerous situations.
I think I need to write a letter to the school explaining why I feel my son needs a one-on-one paraprofessional in the classroom with him. I've got to get the ball rolling now, so that he can have this type of service for the years to come. My family doctor told me a boy she knew of who was deaf had a parapro with him at school from kindergarten through high school.
Time at home with him has been really bad. He gets miserable quickly if he feels pain, or gets bored. I'm going crazy trying to get him to stop crying. I'm finding myself asking for more breaks from the kids. I don't feel guilty about it either, not anymore...
I think I need to write a letter to the school explaining why I feel my son needs a one-on-one paraprofessional in the classroom with him. I've got to get the ball rolling now, so that he can have this type of service for the years to come. My family doctor told me a boy she knew of who was deaf had a parapro with him at school from kindergarten through high school.
Time at home with him has been really bad. He gets miserable quickly if he feels pain, or gets bored. I'm going crazy trying to get him to stop crying. I'm finding myself asking for more breaks from the kids. I don't feel guilty about it either, not anymore...
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