Please tell me your biggest issue that you deal with daily, at school, etc?

Belinda - posted on 02/25/2009

My daughter has pysical and learning disabilities through being born with a neuronal migation. From the age of 16 months she had Physical Thearpy, Speech Therapy and Occupational Therapy as well as botox for arms and legs. When it was time to go to school we found a good main stream (this was important to us as she is a twin and wanted her to have the same chances as her sister) we were allocated a teachers aide for her a few hours a day. The school and teachers were fantstic but after 2 years we relaised that she was actually going backwards. i thought my only option would be to home school then we found a special needs school that has very limited spaces but they offer so much. They stay there for their whole school life and instead of having to do exams and assingments etc, they learn life skills, like how to shop, cook, and later on work and live independently.. what more could you ask for.. there should be a lot more schools like this thats for sure... But my biggest issue was once we informed her Therapist at the hospital that we were sending her there they told us they could no longer treat her... WTF they said they only treat kids with physical disabilities and if kids go to special school its because they are mentally disabled.... they have been treating her since she was a baby and they knew all of her issues but because we wanted the best for the rest of her life we know have to try and find private therapys and pay thousands for botox treatments... how ridiculous is that... I know this may be a bit of the subject line but it just made me so upset... Is it really that hard for all these services to work together for the sake of helping us give our kids a better chance at life. Thanks for listening.

Belinda

Katharine - posted on 02/24/2009

Quoting Jessica:

I guess the next issue is why do the services drop off once a kid is in school? they aren't cured once they are in school.

I don't fully understand it myself but what you'll find is that it becomes harder and harder to find appropriate programs for kids w/ special needs as they advance.  By middle and high school you'll run into problems with scheduling.  In elemntary school your child has a classroom.  In middle school and after, they have a schdule of classes.  They can't be put into an sdc.  They need special ed. Language arts, sepcial ed Social Studies, special ed algebra, etc...

Often it is simply that they don't want to finance a program for just a few students.  This is going to get worse because of the economy.  Here in California we are bracing for battle as the schools' funding  has been slashed thanks to the state's deficit. 

Already there is a dearth of programs for high functioning autisc kids.  They can't get away with warehousing them and there is no money for the programs they need.

Christian - posted on 02/24/2009

Keep in mind that schools do have programs, unfortunately yuou have to stay on top of them to make sure your son benifits.

Good Luck!

Jessica - posted on 02/24/2009

My oldest turns 4 in april, he has GDD and a speech &language delay. He attends kindergarten but it seems he needs more 1 on 1 lessons so homeschooling is looking good to me.when he is at kinder he is either being hurt by a few boys or hurting others.

I know boys will be boys and kids canbe rough etc so i try not to let it bother me.



Another issue i have is that my sons EI is working as a team with me & dp here at home, ds's kinder at kinder and then they also talk to ds's private ST and peadtrician.I worry information will be lost in the grapevine or misinterpreted by someone.



I guess the next issue is why do the services drop off once a kid is in school? they aren't cured once they are in school.

Kerri - posted on 02/24/2009

Thank all of you guys for replying.  I have been reading your posts and most seem to be very closely related, mainly IEP and school issues with teachers just not knowing what to do, refusing to do what they know they need to and then general outright lack of compassion for our children in every day life.  My son has dealt with his share of all of this.  When we first started I had no idea what an IEP meeting was.  I went to the first one, sat there while they went over a sheet of paper and then signed it.  They never asked me any questions, etc. they just told me this was this and so forth.  Fast-forward 9 years and things are completely different.  Each year I have met with my son's past teachers and said - what did he need this year that he did not have - and started from there.  My son has no learning disabilities, only physical handicap.  He has slight OCD with numbers and counting letters in words as he says them or before he reads them.  He was diagnosed with tourettes when he was in 5th grade but we have had no problems with it since then.  Even then it was not bad, he would yell out random words and have random hand movements and neck movements. 

One of the biggest issues we deal with every day is the general public.  People are cruel and inconsiderate.  We NEVER find a handicapped parking space (I drive a custom van with a ramp that needs two car spaces to let my son out safely).  There can be 20 spaces and every one of them has a car in them and not a single car with a handicapped parking permit.  We get stared at every where we go, even by adults.  My son got so frustrated on one occasion in Wal-Mart he actually asked a grown woman if her mother had ever taught her that it was impolite to stare. Most children at school are very nice and protective of Casey but there are always that 10 to 15 kids that MUST make his day difficult in some way, either closing a door in his face and holding it shut or taking his head rest off of his wheelchair - all of which he is defenseless against. 

We have also encountered teachers that just did not have the patience to help my son.  To me, if you are a teacher, you should have the utmost compassion and concern for all children.  It is easy to teach a  smart - "normal" child, however the true test of a teacher is being able to reach the students that require more attention and more work.  I think every school needs a parent advocate that sits in with parents that are new to  IEP meetings and SpEd teacher meetings - maybe another parent who has been through it already and knows what questions to ask and what resources to look for. 

Thanks!  I hope mothers will continue to post here!

Christian - posted on 02/23/2009

My son has SPD (Sensory Processing Disorder) he's diagnosed and sees a therapist, is on meds and we also do home therapy (recomended by his therapist) He is 9. The problem is no one has ever heard of this disorder, I try to explain it to his teachers every year and they act as though I invented a disorder to excuse my son's behavior and academic abilities! I even have a book (writen by a doctor) that the therapist told me to buy to help me understand the disorder and what I can do to help him, every year I offer to the teachers at school to lone them my copy, so they can better understand how to work with and teach him. (he's in mainstream school w/ special ed classes 1 hour per day) But after all of this they constantly send home notes of his "misbehaviors" and that he was in trouble for things like not completing his assignments. (usually if his assignment is not complete it is because he was out of the classroom for a portion of the time given to the other kids) I just get so frustrated with the teachers and "support Staff" because I will remind them of things like his triggers and symptoms as they relate to his "acting out" and they continue to act like I'm making the whole thing up. (buy they way an example of him acting out at school? He can't process excesses of any sence, visual, heard, felt, etc. and last week several kids in his class were yelling and throwing things in Art class, he moved under the Art table and put his hands over his ears and rocked back and forth, when the teacher told him to come out he ignored her until the yelling kids left the room, then he got up and told her he was sorry for disobeying her but the noise and all the colors in the room together were just to much--that's what she said he said to her exactly--she wrote him up for disturbing the art class and told him that when he acts crazy like that it scares the other kids and if he does it agin he can't come back to art. BTW the other boys also got written up, but were no threatened w/ being kicked out or called crazy) So what are my big issues? Unreasonable, unrealistic standards and complete lack of compassiontowards my sweet littlee boy.

Anyone who wants to talk (or vent like I just did :) ) feel free to contact me I listen well.

Beki - posted on 02/23/2009

where do i start?!! my son is 4 years old on sunday and is at the development age of a 18 to 24 month old baby with speach at less thatn a year. the biggest every day problem we face is the fact that he can not talk. we have been trying for a long time to introduce PECS and mekaton but this does not seem to be working. he will communicate by taking you by the hand and taking you to a room but we are now at a dead end as he will just stand in the room with you and not show any indication on what he is wanting.

other peoples point of view really do annoy me sometimes, especialy when they dont know us. i have a neighbour who thinks she knows everything and will insist in parking as close as possible to the disabled parking bay we have had put in so it is easier for our son to get from the car to the house. she has not once asked why we have it or what is wrong, even tho i put a note in her door to say if there was a problem to come and see me.

i was also in a shop one day with my son and had to wait in a queue, an old lady was stood behind us and seemed to think my son was very sweet , that is until i told her how old my son was. she was probabaly thinking he was about 18 instead of 3 1/2 at the time. when i told told her his age she stuck her nose in the air and turned away from us not saying another word!!!! people in the world can be quite horrible sometimes, if they were to be a little more open minded, things wouldnt be so bad. this is probably the biggest issue i deal with on a daily basis!!!!!!!

if you want to talk some more write on my wall. xxx

Marinda - posted on 02/14/2009

My son is 13 yrs old and is in full time special ed on half days.. One of the problems I have is my son coming home telling me things that the teacher did. When I ask the teachers to find out what my son is talking about I feel like they are not telling me the truth.. My son has a IEP with behavior.

Ok wait here is a little background so that this all makes sence.. My son started in Missouri were his father and I both lived. The school there used his dad and I aginst one another causing my son NOT to get what he needed.. His father wants him on a 504 but he ended up with a IEP... DONT understand.. Any way my son has been in and out of behavior hospitals from age 5. His dad used everything he could to keep me away from my son. The schools would not even let me come to the school to eat lunch with him because they were scared of his dad.. "the supper of the school told me this" Any way My so was to have speech, and physical theraphy and it is in his IEP.. After the 3rd grade his dad moved him to Oklahoma where I didn't have any say.. His dad would tell everyone that his wife was My sons mother so me to get any were at the schools I had to drive 6 hours to take in my divorce papers.. But the school still would not let me have any say..           2 years ago my ex called and told me to come and get my son that he could not take it any longer.. My son was trying to kill his self, he was in and out of hospitals, I have been told he has ODD, Bi-polar, seperation disorder, OCD, ADD. He is in the 8th grade on a 4th grade learing. I feel that the school don't care, that they want to get him out of the school "middle" and get him into the high school.  I have ordered the Oklahoma parents hand book for IEP and I use it, but when I ask questions like why don't he have speech, or the pshysical theraphy, I get looks like what I am talking about.. The school WILL not send homework home, because I help him read and understand it, so I get told IM DOING HIS WORK.. When I say anything to the school when I am getting up set, they take it out on my son..    Im sorry that this is so long and all over the place, Im trying to think about this, and talk to my husband all at the same time before the kids get up...

My top 3 things are  1. IEP not being used as they were set up 2. Not enough help for the kids who have behavior, learning disorders, physical disorders...... 3. Teachers, and staff don't tell you what services are there that a child can use.. Ex. My son does very well working on a computer.  His hand writing and spelling are so bad, but if I let him on my computer to do his work, he takes time to check spelling, and eveything, but the teachers wont let him turn in work that he does on the computer?????    I am sorry that this is so long, and that it is all over the place.. I can go on and on ... I just want what is best for my son, and I want him to be able to go to school, and learn in what ever way that is best for him. Thanks for just letting me go on and on...

Katharine - posted on 02/12/2009

Wow!  The top three issues?  That takes some thought.

First and foremost is noncompliance with the IEP.  Sometimes they just simply don't comply.  That's awful but there are remedies.  More common and diabolical is their interpreting the IEP in such a way as to avoid compliance.  If the IEP calls for ocupational therapy, they give her 20 minutes a week.  Have you ever learned anything py practicing for 20 minutes a week? 

Second is related to the first but is, in fact, a separate issue.  At the IEP meeting, the experts all look at the parent and ask, "What services do you want for your child?"  Doesn't sound so bad does it?  The problem is they don't exactly give you a menu from which to order.  I have no idea what services are available or appropriate.  They are not forth coming with this information.  I have come to believe that they do this in order to keep costs down while still being able to claim that they are giving the child everything that the parents asked for.  I swear it seems as though their goal is to keep the parents ignorant.

Third, Services and accomodations dropping away as the child gets older.  For the first few years everything is about early intervention.  By the fourth or fifth grade, the number of placements per school starts to dwindle.  It is becomeing harder to find appropriate programs for my kid.  There is almost nothing available for high functioning autistics.  SDC's in middle school are almost all for severely handicapped students.  It seems as though the administrators assume that kids just grow out of autism.  If wishing made it so...

At this point my fifth grader is in a great school with a great teacher who really gets her.  We start middle school next year.  Heaven help us.

Cindy - posted on 02/12/2009

My 24 month old has Down Syndrome. He is in a great preschool, now, but our city public school system is totally unprepared to educate him. In a huge city like Houston, TX this seems absurd. Yet, most families end up moving to the suburbs or home schooling their kids with DS. We have 3 more years to get it figured out & that is my biggest concern, now.