Just Venting

[momejay]

My DS is 5 & autistic. We have had a horrible summer. Our school system has a crazy way of running summer school. My son has a new teacher, a new aide, a new speech therapist, a new OT...etc. They can't figure out why he can't adjust. He is attacking classmates & teachers. At home, he has also been aggressive & more active than usual. He is non-verbal & can't tell us his problems. In attempt to solve the problem, his class was changed. Then he was kicked out of school & put on home instruction. This lasted a day. His home instructor quit. Now he is back in school, but only half a day. As a single working parent of 2... Summer school only lasts 6 weeks. Where is the consistancy? I understand that teachers might "need a break", but... I've had to put him on drugs now that I don't think are helping much. As I sit here crying with my new black eye...
How about some pixie dust or a prayer for us to help us cope?
THANKS!

[TinkerPixie]

Oh, momejay.............Sending you lots and lots of Pixie Dust and Really BIG Hugs. I'll be thinking of you and your DS!

[mamajoan]

God Love Ya! Hugs and PD. Even tho I am not a parent of an autistic child, I sympathize with you. Some days it seems that this summer has been very long.... I love my kids, but to be completely honest...... I love " Back to School" sales events....:) ;) :)

[tammie]

hi lots of hugs for you.......i have a 8 year old son with autism and is allso non verbel and his last day of summer school is today.......johnathan bit his aid on the neck yesterday becouse he did not want to leave his bathing suite on becouse it was wet and he was ready to get it off.........did not break the skin though thank god...........i know it very hard to take care of our special need kids.........johnathan is very tall and someday he going to be taller then me and i will be in trouble myself...........goodluck...............tammie:bou nce: :bounce: :bounce: :bounce: :bounce: :bounce:

[Nanajo1]

Hugs and PD to you and your son. You are in my prayers. I hope things get better.

[SueM in MN]

It is funny that professionals who know that consistency is everything to many special needs kids just can't seem to understand that when they change the child's whole world, the child might react negatively.
{{{{{hugs}}}}} and pixie dust to you.

There is the funniest commercial for an office supply store called STAPLES running right now. The dad is smiling and dancing around the store while he throws school supplies in the shopping cart. The 2 kids look like they are about to burst into tears. The music that is playing is a Christmas song called "It's the Most Wonderful Time of the Year".

[BuckeyeBelle]

PD, prayers and hugs to you! Sounds like your school system has a lot to learn about autistic kids. :rolleyes:

Our 6 yo is autistic and non-verbal too. This fall he will be going to a whole new school, new teacher, classmates, and he just got new hearing aids and new orthotics & shoes too. I will probably be asking for prayers and pixie dust in about a month too.

[Michelle NY]

I am also sending some pixie dust your way. Hopefully the new school year will be a more stable enviroment for your son.

[lisapooh]

I know it is fustrating but the teachers are not required to teach summer school and some choose not to so they can spend time with their own children. Four of the 12 austistic teachers at our school chose not to teach this summer. Two of our teachers who do not regularly teach autistic took the classes of the four and combined them into 2 classes. Fortunately the affected classes were the higher functioning classes.
Interesting that in one class the teacher has an austic son and he served as a volunteer with one of the other classes. He did quite well.
We are using pects with most of the non-verbal autistic and SEE with a few. It seems to help lessen the fustration for them with lack of communication.

[SueOKW]

I wish I could wave a wand and give you strength, peace, and patience. You have them all already, actually - but you just must be a bit short right now. I have some extra that I would like to give you.... my family has been on a good roll this summer!

I hope you all sleep well to give you strength for tomorrow... please remember to try to sleep.


re:that Staples commercial - could easily be my DH... he always tells the kids about "THE PARTY"... and they say "What Party Daddy?" And he says.. " You know the one I am having on August 24th... oh wait... sorry... that's the day you go back to SCHOOL.... guess YOU can't come..."

Isn't he cruel? Fortunately, they all realize he is joking as usual.

[BuckeyeBelle]

Our son started using PECS this year and it really is a big help. We have to be sure the school staff is doing it consistently (and properly), or he gets frustrated though. That was a big problem at first. We also found that he responds to photographs much better than the standard PECS cards. Now he has his own binder full of laminated polaroids and he loves it. I just want to hug the person who developed this sytem!

[lisapooh]

I agree that photos work much better. More concrete. We just have to be sure that both home and school have the same photos. We have 3 Mavica digital cameraas available to the teachers and one of the parents in the pre-K autistic class gave the teacher a new digital camera just for that class. This teacher makes use of the PECS extensively with her students not just in the books but by posting important pictures around the room for the kids to make requests. Example: by the water fountain and sink are 2 one for washing hands and the other to request a drink. In every center area is a picture for I need help. Their schedules are on strips one per child and the place the photo in the proper center. We photgraph favorite snacks and activities and one of the paras print them up. Often when I sub for a para I do this as they know I'm a computer freak.

[tink2dw]

Here is a ton of pixie dust to be sprinkled as needed for you and your son!! {{{{hug}}}}

[s&k'smom]

When I read the posts it sounded like you were all in my house. This year my son, who was diagnosed at 2 with PDD had so many changes and my maternity leave which is falling right in with the summer school schedule has been a battlefield. Not only new therapists, class, seasonal change so on and so on. S has been aggressive towards the new baby and is feeling so out of control. I too did meds for the first time out of sheer desperation but they are only short term. I have never been so tired. I am already gearing up with an educational advocate to ensure a full day summer program next year. I wish we could all meet at the local deli for coffee. Momejay have you ever looked into getting an advocate? Check your local sped laws too. I hope things get better for you. Can you get some respite? Please let us know how things are going. Things for our family seem to finally be getting better, not much, but better. Hugs and pixie dust to all.

[MBW]

What type of summer school program do they have your son in? My son is 3 and autistic (diagnosed at 18 mos), and started ABA last winter, first in a home program, then at a year-round private school (paid for by DHS.) He's gone from being completely non-verbal to a vocabulary of 75+ words in 4 months, and is now following directions, has good eye contact and started potty training on his own. I can't say enough good things about the program (this program is about 80% ABA, 20% Floortime) and highly recommend it.

Nice thing about the program is that the kids do so well, there seems to be very little turn over in staff - which we all know is so important in our little guy's lives.

Six months ago we'd never have dreamed of taking our DS to WDW (in fact, I went alone with my DD in January). This time, his teachers and OT think he'll do wonderfully - they're not at all concerned about how he'll handle it, and expect he'll have a great time.

MB

[teri]

I kept my son home this summer just to avoid exactly what you described. The heck with the extra therapy if it means a huge backslide in behavior and the kid gets resistant to the efforts!
You have my deepest sympathy and respect, I know how it goes. I wish the school systems would get their acts together.

[s&k'smom]

Hi, wanted to tell you about the summer program my son is in. S is in a 3 1/2 day summer program with 10 hours of inhome support which includes ABA and floortime too. In September like last year he will be in a 5 day full day program with the 10 hour home component but they are relooking at that piece in December. Alot of what they do is because of the budget and I think they may be looking at alternative schools for some of our kids which here is called an out of district placement. Which is very expensive from what I understand. Many towns here still do not recognize the fact that our kids need full day year round schooling. But some are beginning to and at least are offering full day during the school year. I know around here there has been a real explosion in the population. I think they are beginning to recognize it more. Let us know how your trip planning goes, I'm just taking those tentative first steps in planning and have been on the trip planning board too.

[nancycels]

First of all, a truckload of pixie dust to u all! Plus a virtual week of rest and
relaxation!I have 2 daughters who are MR but that's so much easier!

Now, regarding school systems trying to send kids out of district or home
schools:
When my 2nd daughter was going to kindergarten the district wanted to bus
her to a school about 10 miles away, so pick up and return by bus wd be
required. I went to their budgeting meeting and when they started
moaning about the costs of sp ed and transportation, I stood up and
suggested that if they wd simply allow my daughter to walk less than two
blocks to her home school they wd save 'x' # of dollars. I forget what it
worked out to, but i worked w/one of the drivers to figure in their salaries,
her % of the bus cost, gas, insurance etc. Well, not only did i get what i
needed, but my daughter had a great experience going to school w/her
friends! While this may not work for everyone, sometimes if u band together
u can work it out so there's a classroom for your child available nearby.

Not only did the district make changes, but 'parent activism' made the city
paper nearby, so all the local school districts ended up having parents who
started insisting when it was feasible for kids to stay nearby.

Best to u all! Kisses to darling kids!

[momejay]

Sorry it took sooooo long to reply. My son's summer school program ended completely now. I've been very busy. I hired an advocate. I'm too frustrated with "fighting the system" As soon as they were contacted by the advocate, we got some help. He now has behavioral therapy & in the past two weeks he has improved alot. He is finally mastering things he has been working on since age three.
He had been in an autistic program during the school year. (trial based)His program, last year was six hours, five days a week. He had speech 3 times a week for twenty minutes. OT was once a week for twenty minutes 1:1 & 2 times a week he had group OT. The other children were younger so he turned out to be the class bully. (he was a foot taller than everyone else) He used PECs this past year in school & at home. (mostly for snacks) He uses signs, screams & gestures more often. He gets too frustrated with the pictures. He'd rather just show me what he needs. The problem develops when he can't have... for example candy at 7am. The tantrum may last all day or until he sucessfully steals one.
My son had developed normal until 18 months. Then we noticed him using language less often. By age two he was only using around 10 words. By 2 1/2 he completely stopped talking. He still does not talk. (rarely he'll say a complete sentance..."Give me the juice") I've had his hearing tested & it was normal.
He has had all kinds of testing done. The tests say he has mental abilities of a 18 month old, but he has the physical abilities of a normal 5 year old. He swims, kicks a soccer ball & climbs trees. He just doesn't know that if he jumps down from 15 feet in the air that he might hurt himself.
Thanks for all your prayers & PD!
We are taking a vacation in October. There is nothing like a Disney to make you forget your problems & pretend you're a kid again.

[BuckeyeBelle]

Hi momejay, thanks for the update. Wonderful to hear the advocate was able to get some help for your son. It sounds like he is doing great with the behavioral therapy. :)

If you don't mind me asking, what exactly does behvioral therapy involve? My son has some very difficult object obsessions and I wonder if this would help him too. He goes nuts over toilets and wastebaskets; I mean he is uncontrollable around them :eek:. Toilet training is impossible because all he wants to do is play in the potty (YUK). Now we have gates on all our bathroom doors, and only one wastebasket in the house which is under latch also. When we are visiting, our hosts have to lock the bathroom doors or we will spend the whole time fishing him out of the toilet. Most people see the humor in it -- but we really need some HELP!!!!!

Best of luck for the new school year, and have fun planning your Disney trip! :smooth:

[suzysezso]

Bear with me, this is my first post to these boards and I am hoping I don't mess up, but I just had to respond to all the familiar situations you all have shared.

First of all, for the Mom dealing with the school making changes in her son's routine, I can so identify with that. Of course you must know that you must make a point of the vital need for familiar routine and soft transistions when you are called to help formulate your child's education plan, and you must be vigilant to see that they enforce it.
That being said, of course the school is going to do as they please and tell you that is their (and your) only option. Then we must resort to the squeaky wheel technique until we get the grease we need.
It took me a long time to steel my nerves enough to 'rock the boat" but it needs to be done. My son suffered almost a full year of abuse at the hands of an incompetant teacher before I realized that his fierce resistance to going to school was more than him having "an autistic moment" and now I must live with my guilt over that.
Good luck and God Bless you and your child! Love will conquer all!

On a lighter note I had to laugh at some of the other things I've read here. My son also cannot stand to keep wet clothing on his body. He will wear only a speedo type of swimsuit, not being able to tolerate the legs of trunk type suits clinging to his skin. This summer we went to Islands of Adventure in Orlando and I was not prepared for what happened when we got wet on the Dudley Do-Right ride. As soon as we got off the ride he immediately started to strip naked (He is 10 years old)! Luckily I had an extra pull-up pant to quickly put on him but then I had to hustle him into the nearest gift shop for a quick purchase of shorts and a tee shirt!~ My poor daughter walked 20 feet behind us pretending she didn't know us! LOL

I've gone on long enough so I will save the stories of JH's elevator obsession exploits for next time! OY!

[teri]

Welcome to our board, suzysezso!

My son is in full inclusion in our local school, I had to stand up and YELL at one particular IEP... I can vouch for the squeaky wheel thing. ;) It is even more fun when they 'team' you, and start 'counseling' you on your unrealistic expectations for your child, and label you as uncooperative ... or write things on the IEP notes such as 'parent refuses to accept team recommendations' as if the Parent is not The Most Important Member Of The Team! Oh yes, it can be frustrating.

Our school system does not have regular summer school, it is privately administered. Our program would have been a county program 15 miles away, just for the summer, with summer aides and summer substitute teachers, and only for 4 weeks. Transportation would have been 45 minutes each way, and our experience has been that the buses are often late or do not come at all. Not worth the loss of family bonding time, vacation, and fun activities we did at home!

[s&k'smom]

Isn't it funny, we all live in different states but the feelings and situations can be so similiar? I too found with an advocate what a difference dealing with the school system can make. As for what my son likes it's vacuums. He will find it in anybody's house no matter what. We have bolts on our bathroom doors and front door but he is well on his way to being six feet tall and has just learned to climb out our kitchen window! His other things is shapes, especially squares. When we go for walks he has to drop a rock (1-3) in each drain. You really do have to find the humor in things. This topic is like a good Al-Anon meeting. Thanks to all for sharing and lots of pixie dust!!!

[lisapooh]

While I know it is important for autistic children to have consistancy there is something you must face and make your own decision on. There is no way that an IEP can be written to force your child's teacher or para to work summer school. Contracts are written for the school year and do not include summer school. It is separate. You can specify that if his teacher is working summer that he be placed with her and i he has a one on one you can request that the one on one remain the same if she chooses to work summer. That is the limit you have. Even with an avocate a teacher or para is not required to work summer sessions and with the current curtailing of summer school many teachers are choosing not to work and orking in other programs that are summer long.
You will probably need to ask your teacher and para their plans as to summer school before making your decision on whether or not to send our child. With some it may be better to keep your kid at home or find a special camp situation or even see if the class para wishes to work for you as sitter during the summer. We have several paras opening their homes for home child care over the summer this year rather than work in the school because their children were not accepted for summer sessions.

[momejay]

My little darling is also "in love" with water. We send him outside when we do dishes. I can't leave anything in to soak in the sink or he strips & jumps in. He too splashes in toilets. He also does the rock throwing thing in every mud puddle. We limit trips to the local mall because they have fountains (It is very hard to explain to security why you are carrying a screaming child out of the fountains.)
His behavioralist is working with him, on sitting in a chair for at least 5 minutes, to give eye contact & to recognize his name in writing. We are still on the basics. PECs & potty training, we are also hoping to "get the hang of." Most importantly are his agressions. (biting, pinching, head banging...) He needs to know that sometimes he can't be "the boss." He has hurt classmates, teachers, & his sisters. (mostly when he is told "NO!") He has had therapy & school since he was 2. (some private, some paid for by school system) Back then they thought I was just a nervous, overprotective, mother with another child with speech & language delay.
Speaking of the other one...My daughter has the problem with the wet clothes or any thing dirty. I have to carry an extra outfit with me everywhere. She doesn't strip, but she complains very loudly all the way to the bathroom. She will only wear dresses, sometimes shorts. She hates anything that covers her knees. She changes her clothes several times because of invisable dirt.
Hopefully, my son will have placement soon for this Fall. We just visited another school today. Our advocate said that my son's IEP needed a lot of work. It is too bland, could be applied to almost anyone & not specific enough to his needs. I just can't wait to get this all over with.

[Prezli]

Originally posted by s&k'smom
Isn't it funny, we all live in different states but the feelings and situations can be so similiar? I too found with an advocate what a difference dealing with the school system can make. As for what my son likes it's vacuums. He will find it in anybody's house no matter what. We have bolts on our bathroom doors and front door but he is well on his way to being six feet tall and has just learned to climb out our kitchen window! His other things is shapes, especially squares. When we go for walks he has to drop a rock (1-3) in each drain. You really do have to find the humor in things. This topic is like a good Al-Anon meeting. Thanks to all for sharing and lots of pixie dust!!!

OH MY... Vacuums! I thought my son was the only vacuum boy! He woke up one day at age three
and started with his vacuum perseveration and it is still here today (although under control) at age nine.
He has Aspergers Syndrome and is in full inclusion with an aide. He does quite well but some of our IEP'S
have been complete HELL. Lots of yelling and crying on my part. But I am very proud of my boy and how hard
he tries. I am rewarding him in January with a trip to WDW but I am not telling him until we get to the
airport as he will perseverate for the next 4 months about it!

[s&k'smom]

Sorry I haven't been able to reply to you a fellow vacuum mom. My server is down and this is the first chance in three weeks that I have had a chance to get on the boards and boy to I miss you guys. My son with the vacuum fettish is busy at my mom's at this moment playing with her vacuum. We too are planning our trip and have just begun to broach the subject with him. Let us know how the planning goes. I go back to work next week from my 14 week maternity leave and I'll be able to get something done.

[momejay]

Just in case you're wondering...
My son still has no placement in any school program. None of the local programs have room. My son's school district, my lawyer & I are still searching. They have sent us for 3 more visits to private schools. I realize they are trying, but my son isn't getting an education & I can't work. Our next meeting isn't until next week. All this because he has behavioral problems. (so he bites...they should have recognized his frustration & prevented the bite...he has a 1:1 aide) I'm about to tantrum! Wish I could give you good news.

[SueM in MN]

I'm very sorry to hear about your placement troubles. All I can do is send more pixie dust.

[s&k'smom]

Wow, lots of pixie dust for you. My son just started school yesterday and had a good first day so let's hope thats the trend. I'm glad to hear you have an attorney to help you. It is so important to know the law in regards to education. I work with advocates and I have learned alot especially because though my son had a PDD diagnosis he has behavioral issues as well. Keep us informed.