Post by judielise on Mar 2, 2008 8:15:17 GMT -5
Hello, everyone,
I promised to update you on the IEP meeting for my ds. Just a reminder of situation. Ds is in Home and Hospital due to Sleep Apnea and Orthostatic Intolerance/Dysautonomia.
Well, things went pretty well for an initial meeting. For one thing, I know everyone. This is the same middle school older ds (Asperger's/HFA/PDD-NOS) went to and we had a very good run. So things were very friendly.
The worst of it was...my advocate did not show up!! I was very upset about this as she was to have personal info on supporting children with Dys and I wanted that support. Well, here I had to go again all by myself.
I began by updating all on the medical side. I stressed that the goal is to return ds to school (socialization), but gradually. Staff and I decided on split IEP/504 to meet all needs.
Here is the outcome:
1) We start with speech and language therapy (ds diagnosed with expressive/receptive speech disorder) through the school (Home and Hospital may have a team, but spec ed coord really wanted him to have therapist from school). She stressed if her own children needed services, she would recommend the therapist. Just as a point, this was not obviously how things normally were done. I put it here, just so parents can know about it. Ask for the best and how to get it. The school does know how to do it. In coming to school for that, he is only there 45 minutes to start.
2) Then we mapped out a 4-hour day, starting with 2nd or 3rd period. Due to sleep issues, it made no sense to start at 7:55am. I let them know we could gradually get to that, but we were starting off badly if we tried it at once. It meant that his classes would be based on time present, not a regular schedule. They brought in the entire 6th grade schedule and mapped each core class by when it was given. In this 4 hour day, he would have one special (art or music) and his core curriculum. No gym due to exercise intolerance, but we plan to meet requirement through adaptive swimming if tolerated and approved by doctor.
3) As for doctors, I need a litany of paperwork completed. Which meds he was allowed to take in school (ibuprofen is the only one-for headache), emergency plan, medical plan, medication given during the day, medical release each time we increase time in building. They are going to contact everyone we saw in the last year, to really get a sense of medically, neurologically, audiologically where he is.
4) No aide. Some crazy law. No aide can be assigned for a possible problem. They literally have to wait until they actually see something to request one. I was appalled. I said you mean he has to fall onto the floor first!!! Yes, unfortunately. Here I made a note. Call the school board about it. We compromised, by stating a school staff member must accompany him for all class changes and bathroom breaks.
5) He is allowed to go to the health suite (fancy name for nurse's ofc) WHENEVER he feels symptomatic. No one can go by how he looks. I stressed to them that you have very little time, if he is fainting. And may have no time in a sleep attack. In those cases, I am to be notified, no ambulance called unless he is seizing or turning blue. I know that sounds crazy, but we have had so many unnecessary trips to the ER. Turning blue is the most troubling. Very little oxygen=brain damage to me.
6) In an audiological exam, the examiner felt a FM system would be beneficial. He has a slight hearing loss, not enough for a hearing aid, but enough to warrant the machine. (What I also know in hindsight is that when he complains he can't hear anything clearly, he is actually symptomatic of a faint. I stressed that if he said that, he must lie down immediately.
7) As for lying down, he is to be allowed to lie ANYWHERE he is if symptomatic.. We have tried to say hold on until...it doesn't work. Lying down restores blood flow to the brain and heart and extremities. Continued standing can bring on a faint.
8) He will be assigned a buddy in class. Someone to reaclimate him to middle school (he only had two weeks in the building at the beginning of the year before we pulled him) I have a pamphlet explaining dys at a child's level. I will bring copies of that as well as copies for teachers of advice (from a local teacher) on how to teach a child with dys (courtesy of one of the dys advocacy sites)
9) He must have water (or other fluids) with him at all times and must be allowed to have salty snacks throughout the day. This is similar to instructions for a child with diabetes. I have to build this into the day, because son will always say he is fine, until he is not.
10) Updates to this plan will be more frequent than normal. Literally, we will be in daily communication as well as have the ability to make changes w/o too much protocol. Paperwork be d**ned, I do not want to wait on changes.
There is more but this post is getting long. There may be ESY (Extended Year Services) due to time missed. His assessments must be stretched over weeks, not performed in one day. He must have speech and scribe assistance on these exams.
I can't think of anything else. I hope some of this helps. When we have hashed out spch/lang goals, I will post them too.
Take care,
Judi
I promised to update you on the IEP meeting for my ds. Just a reminder of situation. Ds is in Home and Hospital due to Sleep Apnea and Orthostatic Intolerance/Dysautonomia.
Well, things went pretty well for an initial meeting. For one thing, I know everyone. This is the same middle school older ds (Asperger's/HFA/PDD-NOS) went to and we had a very good run. So things were very friendly.
The worst of it was...my advocate did not show up!! I was very upset about this as she was to have personal info on supporting children with Dys and I wanted that support. Well, here I had to go again all by myself.
I began by updating all on the medical side. I stressed that the goal is to return ds to school (socialization), but gradually. Staff and I decided on split IEP/504 to meet all needs.
Here is the outcome:
1) We start with speech and language therapy (ds diagnosed with expressive/receptive speech disorder) through the school (Home and Hospital may have a team, but spec ed coord really wanted him to have therapist from school). She stressed if her own children needed services, she would recommend the therapist. Just as a point, this was not obviously how things normally were done. I put it here, just so parents can know about it. Ask for the best and how to get it. The school does know how to do it. In coming to school for that, he is only there 45 minutes to start.
2) Then we mapped out a 4-hour day, starting with 2nd or 3rd period. Due to sleep issues, it made no sense to start at 7:55am. I let them know we could gradually get to that, but we were starting off badly if we tried it at once. It meant that his classes would be based on time present, not a regular schedule. They brought in the entire 6th grade schedule and mapped each core class by when it was given. In this 4 hour day, he would have one special (art or music) and his core curriculum. No gym due to exercise intolerance, but we plan to meet requirement through adaptive swimming if tolerated and approved by doctor.
3) As for doctors, I need a litany of paperwork completed. Which meds he was allowed to take in school (ibuprofen is the only one-for headache), emergency plan, medical plan, medication given during the day, medical release each time we increase time in building. They are going to contact everyone we saw in the last year, to really get a sense of medically, neurologically, audiologically where he is.
4) No aide. Some crazy law. No aide can be assigned for a possible problem. They literally have to wait until they actually see something to request one. I was appalled. I said you mean he has to fall onto the floor first!!! Yes, unfortunately. Here I made a note. Call the school board about it. We compromised, by stating a school staff member must accompany him for all class changes and bathroom breaks.
5) He is allowed to go to the health suite (fancy name for nurse's ofc) WHENEVER he feels symptomatic. No one can go by how he looks. I stressed to them that you have very little time, if he is fainting. And may have no time in a sleep attack. In those cases, I am to be notified, no ambulance called unless he is seizing or turning blue. I know that sounds crazy, but we have had so many unnecessary trips to the ER. Turning blue is the most troubling. Very little oxygen=brain damage to me.
6) In an audiological exam, the examiner felt a FM system would be beneficial. He has a slight hearing loss, not enough for a hearing aid, but enough to warrant the machine. (What I also know in hindsight is that when he complains he can't hear anything clearly, he is actually symptomatic of a faint. I stressed that if he said that, he must lie down immediately.
7) As for lying down, he is to be allowed to lie ANYWHERE he is if symptomatic.. We have tried to say hold on until...it doesn't work. Lying down restores blood flow to the brain and heart and extremities. Continued standing can bring on a faint.
8) He will be assigned a buddy in class. Someone to reaclimate him to middle school (he only had two weeks in the building at the beginning of the year before we pulled him) I have a pamphlet explaining dys at a child's level. I will bring copies of that as well as copies for teachers of advice (from a local teacher) on how to teach a child with dys (courtesy of one of the dys advocacy sites)
9) He must have water (or other fluids) with him at all times and must be allowed to have salty snacks throughout the day. This is similar to instructions for a child with diabetes. I have to build this into the day, because son will always say he is fine, until he is not.
10) Updates to this plan will be more frequent than normal. Literally, we will be in daily communication as well as have the ability to make changes w/o too much protocol. Paperwork be d**ned, I do not want to wait on changes.
There is more but this post is getting long. There may be ESY (Extended Year Services) due to time missed. His assessments must be stretched over weeks, not performed in one day. He must have speech and scribe assistance on these exams.
I can't think of anything else. I hope some of this helps. When we have hashed out spch/lang goals, I will post them too.
Take care,
Judi
I was about to conquer the world but then I got distracted by something shiny.
