Subject: Angelman I.Q.

Hi, Ms. Sprowles this is Sam Henderson Christopher's dad. I am glad to know that there are other parents that know or feel that their children do not have mental handicaps. Christopher along with other AS. kids appear to be of normal intelegence. However unless you ask him a question in a way that he can answer it it would be hard to know it. If I had it to do over again I would have NEVER let our school do any evaluations on Christopher as they always give you poor results. The best way to get a good evaluation of what your child can do is to go to a private practice that deals with hard to test children. With our kids handicaps it is almost impossiable to find a test that they can do, however I know of several that are certified test they are, Pictorial Test of Intelligence (PTI), Columbia Mental Maturity Scale (CMMS) and Psychological S/R Evaluation for Severely Multiply Handicapped Children (PSR) all of these test allow for eye gaze and or have pictures that are large enough for our children to touch with accuracy.

Subject: Re: Angelman I.Q.

Hi Sam and Everyone,

Thank you for sharing your information and I am sure it is greatly appreciated by everyone. We should know what our options are when the school system says your child cannot learn because of their tests and evaluations. I think when we conceptualize an AS child's learning abilities as not being handicaped. We accept them for what they are and do not think they should be what is considered *normal* and taught from that perspective. We love and observe them and teach them from their strong points to better communicate and learn just way they are! Sam, is your son advanced for an AS child?

We are going through this situation now with Shannon's school and have to deal with the fact they have given up on her ability to communicate and have categorized her as untrainable at sixteen years old. We are taking action but the plot is just beginning to unfold and we would love to hear what everyone else has to say. What have other parents done when the school system tells you your child cannot learn? We are in the state of Florida and if you comment let us know your state or country as a point of reference.

I agree with both Julie and Elizabeth's statements, and their input is duly noted and appreciated.

Sincerely,

Harold Anderson

Subject: Re: Angelman I.Q.

Sam, Is Christopher deletion negative or UPD? I've heard that children in those categories tend to be able to do more than del+ kids. I think, like every other syndrome, there is a range of abilities. I haven't tried any kind of eye-gaze tests, but that's how Emily mostly communicates needs/wants as well as just grabbing it. I'd like to do some research on that kind of test. We've been working on picture i.d. for years now with a tiny bit of success. As much as I would love to believe Emily is not mentally retarded, I'm not sure I agree that she has normal cognitive abilities. Regardless, functionally, Emily has severe limitations. Honestly, she rarely responds to questions or even behaves as if she knows she's been asked one. Maybe I anticipate her needs too much and don't give her a chance to ask -- she's defintely made her preferences known over the years. I'm trying to keep an open mind, in any case, and try not to limit her potential.

Marianne (Emily, almost 7, del+)

Subject: Re: Angelman I.Q.

Christopher is deletion positive.

Subject: Re: Angelman I.Q.

Hi, I have been dealing with Coralynns' school for the last three months they saaid they no longer had a program at their school and that they would be sending her to an out of district school. I requested the one I felt could benefit her the most and I was told no way. I guess they don't work with that school because of differences in the past, money issues. So I fought them on it and now they say that they haave a prigram for her and when we had the IEP meeting they didn't have a clue. So now they are saying that their program will be , Coralynn will get to school at 8:15 a.m. and an aide will bring her into a room where she will take off her coat and put her book bag away. Then she will have free play, and a short one on one with the aide for some tactile stuff. then at 9:15a.m. she will be allowed to join the kindergarden class for recess. Then from 9:30 until 10:30 she will be back in the resource room with the aide for more 1 on 1 taactile, now when I mentioned that she will need some sensory integration prior to 1 on 1 tactile , I was told from the therapist tha she does not feel that sensory integration is a quote " cure all, and we won't use it all the time, maybe now and theen we will add it in but she will leaarn to sit and attend without it." I hate to inform them but she has had sensory integration for the last 5 years and it worksd great for her. So now we are at 10:30, she goes back to KD for recess again and then from 11- 12:00 she joins them for lunch. Then baack to the resource room for quiet time and a nap. Then at 1:10 she goes back to KD for recess, then goes to snack with them at 1:40. She then has quiet time until around 2-2:15. Then it is music in KD if she is able to be there and not disturb. Maybe they will call that noisy time for her they said. Then from 2:30 until the bus comes she is in the resource room for cleanup and go home. How does that sound for a good school program? I'll tell you what I think., she is not in school at this time!!!!!!! Any ideas on what I can do to beat teh system?

Corinne

Subject: Re: Angelman I.Q.

Hi Corinne

Well what a joke that program is! It is not even a program. When does the communication happen? Or anything else for that matter? I'll tell you what hire a good lawyer and get them!!!!!!!!!!!! I'm so sick of the school trying to convince us that our children are getting an education when in fact it is just baby sitting they are getting. I don't think you where on line but we basically had the same problem in (HAWAII) except they would confine Matt in his stroller or rifton chair all day and make excuses as to why they couldn't work with him. Anyway I got to the point I could not take anymore of the so called professionals bull---- and hired an attorney and took them to court!!!!!!!!! WE WON but we are still having problems . I have basically decided that I'm going to sit in the class room all day and make sure that they are "teaching" our son. Oh by the way our lawyer bill was 18,000 that the school paid! We didn't care how much it was going to cost us or them. I lost most of my hair on the top of my head and stopped having periods for 6 months because of all the stress. But I'm a fighter and did what I had to do to make sure Matt got the same as every other kid gets. I pissed off the professionals but I don't care. We even told the OT that used to work with Matt that we where taking her privileges away so she would no longer have the opportunity to work with him. The DOE said she was the only one that covered that school but I told them tuff hire someone else. They didn't like it but they had no choice. I guess they thought I would be a push over especially after they saw me!! I'm 5' 3" 113 lbs , don't look threatening , and still get carted when I try to buy wine. I'll be 35 in December. They got a huge surprise! My mother thinks that is why I got an angel...... I know how to FIGHT .

I could go on and on but the best advice I can give you is to keep a daily journal (don't tell the school) of what goes on. You would be surprised of what people say. I had a book by the time I found a lawyer to take the case. Keep good records and get a communication book you can send back and forth to the teacher and therapists. Have them write what your daughter is doing etc. Our past teacher hung herself by writing that she was not following the IEP etc. All this adds up to evidence for your case. I hope this helps!!! The school was totally blown away when they found out I had kept a journal from day one.

Linda Matt 4 del +

Subject: Learning

What we did when the school system told us that Christopher could not learn was to video tape him picking out colors, numbers, shapes, sizes, up/down, over/under, spelling words, math problems, turning on faucets, driving his power wheelchair, saying uh huh for more strawberries etc... This helped alot but did not cure all of our problems.

Christopher also functions at a age appropriate level when given modifications to allow it.

Christopher for a long time now has been talking in sentences but it is very hard to understand what he says but, not impossiable.

There is now more and more software on the market that goes from speech to text. I looked at one such program Saturday it was called the Power Secratary made by Articulate systems 1-800-443-7077. The way it works is that you say words into it to recognize your voice pattern. Now keep in mind that Christopher could not use the whole system but the one part that he could use worked like this, you go to edit and type in the word or words to correspond to what your child said. For instance if your child says "huh-buh-guh" for hamburger you would type hamburger them say "huh-buh-guh" and that would program it to print hamburger when you child said "huh-buh-guh.

In Christ Sam Henderson Jacksonville, NC 28540

Remember in Christ all things are possiable.

Subject: Schools

Hi Harold, We also live in Florida, in Clermont (Lake County). We moved here three years ago from Orlando (Orange Co.). Where do you live? David is 14 and is classified as TMH (trainably mentally handicapped) and we have been in a whole range of school situations over the years--very good, very bad, and mediocre. Just before his tenth birthday, David began using facilitated communication which has been such a wonderful blessing. It's terrific to be able to get real feedback from him instead of always having to try to guess or figure out what he wants or needs. Since sixth grade he has had his own aide, who was supposed to be his facilitator. The aide he had the first year worked out pretty well, and he was strictly in regular classes. However, the mold was SO BAD at the school that he suffered from allergies all year. Last years aide was a DISASTER!! This year he started high school with a new aide, who seems to be working out very well so far. In just one week, they were already making very good progress using FC. It's very frustrating trying to find out what works best for him educationally. He is extremely bright, but he also is way behind in self-help skills, and communication without FC is fairly limited. Trying to find the right mix at school is quite a challenge. In Orange Co., when he was only 11, the "educational experts" were asking me what vocational course I thought would be good for David, because they really needed to start training him for it. It was evident that they thought educating him was a lost cause. I told them they still had ten years left with David in school, and I thought that it was a little early to give up on him!! Barbara

Subject: Re: Schools

Hi Barbara,

Thank you for your comments! Shannon is my niece, goes to school in Pasco county, and lives in New Port Richey, I live in Fort Lauderdale 5 hours away. Shannon is 16 and has taught her parents to communicate with her through trial and error using combinations of facial expressions and gestures indicating what she wants. She is also way behind in self help skills but responds very well to schedules, loves music and her audio association is excellent. She is at the top of her game when in the swimming pool, and has good strength in her hands for grabbing clothes and toys but little confidence in her ability to use her fingers. Shannon may be a little behind some AS kids as little work was done with her for the first eight years of her life, before she was adopted. It is great that Facilitated Communication has worked for David. We would like to know more about FC and its application, if anyone would like to post some specifics.

Shannon gets a new teacher this year and they are using a Home Economics teacher as a substitute until one is hired, the situation is a disaster. We have started our paper trail and submitted a request to revise her IEP, and schedule a meeting. We will see what their reactions are to all our requests. We will bring a lawyer if forced to, but best we work them a little and hopefully they will cooperate, after all, we could be asking for full inclusion. The big problem with Florida is there is no money and even if you win in court, you may be out of luck anyway. I think we are 49th of all the states as far as having money for these programs. There are 9,000 people on the waiting list for full care in Florida and the local ARC rep. recommends we put her on now. He said most MR citizens in Florida have to be placed because the parents die, and since the list is so long, it is better to have her on it. We can always refuse placement when her name comes up, but if something happens to her parents at least she is on the list.

Harold -- Angelman Syndrome Information for Families and Professionals http://home.imsweb.net/~artander/

Subject: School & Rifton Trike

Hi everyone:

We've been away on holidays, so it took me quite some time to go through all 150 emails (but, I made it).

I don't know what to do with myself now, Richard (7as) and Matthew (5) began school today. Now I only have Rod (3) and Timothy (16m) to deal with, piece of cake compared to the summer.

I was so excited when I found out who Richard's regular classroom teacher is this year. Apparently she had been begging for him to be in her classroom this year and she has much experience with special needs children. Also, Richard's brother Matthew will have the same teacher. I am not sure what to do here, as I would love for them both to have the same teacher. But, I don't want Matthew to be angry that Richard is in his class part of the time. I hope I made the right decision in leaving Matthew in this classroom. I know Matthew needs his space and yet I want him to be more tolerant/patient to his older brother too. I noticed that there were some discussions on the Rifton Trike. Richard has had one for three years and loves it. It was expensive but the local Kiwanis Club purchased it for us. Richard is the only kid allowed to ride his bike at school in the hallways. Riding the trike around the gym is Richard's way of participating with the class during P.E. time. He is steering the trike more and more on his own now.

I must apologize for the long delay in getting the information about OASIS "Online Angelman Syndrome Information and Support" channel in irc.dal.net, this is a inter relay chat channel. I'm trying to get the information out this week. I ask that if people are interested in this to please email me DIRECTLY for the information please!

It is wonderful to see all the new people in here !!!!

Sincerely,

Marci Dirks

Subject: Re: Processing delay

Susan acts the same way----oh my, today is one of those yucky days in D.C. Years ago I even contacted the Nat. Epilepsy Society because Susan's seizures were so seasonal. Every May and October (no longer since new medications and maturation). They told me that wasn't possible. I still don't believe them!!!

Anne

Subject: Re: Processing delay

Emily is always more lethargic, uncooperative, and hard-to-please right before low-pressure systems come in and improves once it rains. (Wierd, but that's when I went into labor with her, too, two-weeks early!)

Marianne

Subject: Re: Processing delay

In a message dated 96-09-05 17:03:46 EDT, you write:

<< seizures were so seasonal. >>

Anne.

A few months back there was a number of us discussing that very fact- that the kids bad times with seizures seemed to be associated with the spring and fall seasons! My theory relates it more to the wild barometric changes that we experience at those times of the year. My reason for this is that frequently, Katie (A.) seems to have different affects that seem closely related to the weather: dry and high, she's usually up and wired, whereas when its cloudy, etc., she seems more mellowed out, sometimes to the point of being lethargic. Deanna

Subject: School systems

Hi Everyone,

Well as usual the fight continues with the school system here in Hawaii. Matt started school again this week and so far it is not even close to what should be going on. I'm not surprised. I guess I'm going to have to sit in the class room and make sure things are going the way they are suppose to go. I will do this if I have to. I'm so SICK of parents (who don't have special kids) telling me how wonderful the school system is for Handicapped kids. THEY DON"T HAVE A CLUE!!!!!!!!

We found out today that there is a good chance we can get reassigned (we are military). THANK GOD, anyway the problem is we don't know where to go. That is we don't know where the good school systems are? We do know Hawaii is ranked 49th over all. Does anyone know where I can get information on what states are considered good regarding schools, respite, etc. especially for AS????????? I'm a very resourceful woman but this has got me stumped. The ARMY won't move us until we have a place. The last thing we want to do is to be in a worse situation than what we are in now. Oh by the way we just got extended for another year in Hawaii so my husband can finish his COMMAND. We need a place to go!!!!! Any infor would be greatly appreicated.

MARTHA: I like reading about Sara's accomplishments. It gives me hope about MATT even if he is del +. My husband is from SCRANTON, PA.

Linda (Matt 4 del+)

Subject: Re: School systems

Linda, I can't remember what your desire for Matt is regarding inclusion. If that's what you want, I think you'd need to know if a school system has adopted "Systems Change," which is a program designed to help schools meaningfully include special needs students. In Kentucky, where I live, only a few counties have this. I live in one of only two urban areas in our state and we don't really have a good inclusion program. So I have my daughter spend half the day in a self-contained classroom and the other half with an aide in a regular K-1 combined class. She will probably be mainstreamed less, however, as she gets older. She gets PT and OT only once a week through the school, but they do the work in meaningful situations in the classroom which are carried out all week by the teacher and aides. She gets speech twice a week, but it's not very good. The school system did buy her an alpha talker and walker which Emily can take home. I've decided it's not the best it could be, but definitely not the worst.

I think Virginia has some good inclusion programs and New Hampshire. In Kentucky, the only really good one is in Kenton Co. (near Cincinnati) but I don't know of a base closeby. I've worked with some excellent teachers (I work in public television and produce professional development programs for teachers) from Fort Campbell schools, but I don't know about their service to special needs students. (The nearby county schools aren't very good, however.)

That's all I can offer -- good luck.

Marianne

Subject: Re: School systems

Don't come to Maryland. Try Wisonsin!

Subject: Re: School systems

New Jersey can be a bit problematic in terms of support services.

Julie Hyman

Subject: Wisconsin

Junebag@aol.com wrote: > > Don't come to Maryland. Try Wisonsin!

Just curious, why Wisconsin? We live there. Am I missing something? We have Katy Beckett, Family Support and Respite. We are lacking in recreation and day care for disabled (unless you're under 12). After summer, there is not much for Jennie to do around here until school begins. It gets very long and boring. We always plan our vacations in August because of this. The idea Julie has about Big Brothers & Sisters for sibs of disabled is good, but how about them for our AS KIDS? I wish our communities would provide activities for our AS children like they do for our normal children. Life would be so much more fun and fullfilling for them and us parents could cope much better! One of the reasons we're so worn out all the time and need to place our kids is because there is so little for them to participate in. I think it's the responsibility of our communities to create programs for them, like all other children. It also seems to me that Autistic kids have some sort of criteria that the school districts have to meet when educating these kids. Is this correct? Most AS children have specific needs that some schools address and some don't. Is there anyone involved in the AS Foundation or Research Group that could put together AS childrens educational needs so that school districts are REQUIRED to put them in their IEP's? Such as one on one aides, feeding therapy, drooling and gagging management, communication, etc, etc, etc? Janice Daley (Jennie 15+, Grafton, WI

Subject: Re: School systems

I can't tell you which states are better than others....it depends on what you are looking for as well as the specific locality within the state that you might move to. Unfortunately, schools even vary within the same county. But, call NICHCY -- The National Information Center for Children and Youth with Disabilities -- at 1-800-695-0285 and ask them for their state resource sheets. They have one for every state. Listed on each resource sheet is the PTI -- Parent Training Information center -- there is at least one in every state. Get in touch with them....they can give you an honest sense of how their state delivers services, whether integration is practiced etc. It's a beginning.

Sue

Subject: Re: School systems

Linda, >From what's been here on line lately, I'll offer this: NJ can provide good school services, but from what I've personally experienced and heard from others here locally it can be spotty. Also, there are not too many other services readily available outside the school systems. Someone from FLA seems to be having some problems-I don't remember who, so would that person please speak up? Another person here has seemed to have a lot af services available in PA, perhaps they could comment for you on the school issue.

Deanna

Subject: Re: School systems

Dear Linda,

We checked out schools in Mercer Co., NJ, and found that all special ed. was in one central group of buildings, kindergarten through age 21. The facility, staff & equipment were all fantastic, but those kids were completely isolated from the regular ed. students. My husband's new job is in Princeton, but we elected to keep our home in PA just because we did not want Sara in such a segregated environment.

Martha

Subject: Re: School systems

Hi Sue ! I wasn't aware you were on-line!

RE SCHOOL SYSTEMS, perhaps we need to employ the power of the PEN.... We appear to have an ally in Exceptional Parent Magazine....Perhaps they could survey their readers and do a kind of "Consumer Reports" Ranking on School districts nationwide. I would gladly relate my experience in our county/school district. While it may be hard to gauge, perhaps some national competion of sorts would motivate districts to save face in and away from bad P.R. (justa thought)

The Sullivan's (Joe, Carol, Meghan, Matt & Molly)

Subject: Re: School systems

Hi! I just got on-line. I thought I sent a generic message to everyone about Danna...now 13 (YIKES!) but I guess I didn't do it correctly...ah well, I'm a low tech person still. Exceptional Parent would roll over and die if we asked them to rate all the schools....there are so many! and then often only as good as those who teach within them. Someone from Syracuse once said, "We had inclusion once but she left" Sad but still true. We need to work toward systemic change.

Subject: School systems

Dear Linda,

If you move to Bucks County, PA, you will be eligible for some pretty good benefits from the state and county, at least for now. In Sellersville, there is an agency called the Foundation for Human Development which has a very good full-time preschool program. Sara was funded there by MHMR, and when I say full-time, I mean full-time. They closed on Christmas, Thanksgiving Day, and New Year's Day. Otherwise school was in. For two years MRMH funded Sara for summer school as well.

The Foundation also provides a respite program for free Tuesday through Friday afternoons and evenings, 3:30 to 7:30 TWTh, until 10:30 F.

The Central Bucks schools have been very good. Sara is in a Life Skills class in a regular elementary school. There are six kids in her class; one teacher, two aides, and Sara's TSS. She receives PT, OT and speech therapy.

Good luck.

Subject: Wisconsin

Dear Janice,

Every September the schools send home notices about before and after school programs. The local YMCAs all offer great after-school setups, including swimming. When parents complain (whine) to me about how much special ed. costs the school district, that our kids get so much more than other kids, I point out to them that we pay taxes, too, and our children are unable to take advantage of 99% of the extras offered to every other student, and our kids probably need these activities more than anyone else. Start with Girl and Boy Scouts right down to the traditional overnight trips schoolkids take; our children are just not welcome or tolerated.

I'm going to become a real pain in the rear at Sara's school this year. I'm going to post a notice:

"I will pay $10 to any child who invites my daughter to his/her birthday party. I guarantee full adult supervision and a swell gift. "

Do you think that will shame them?

I also plan to have Lisa (Sara's TSS) take her to Scouts as soon as the notice comes home, and we will do any other after school activity that looks like fun. This all depends on Sara's having an aide, and she does right now, so we are going to take advantage of this. Maybe if the other parents see Sara at some of these goings-on they will wake up to the fact that the special ed. kids are children, too.

Martha

Subject: School

Martha, Are you really going to post such a notice? I doubt that you'll get a response. I would love to hear what happens. Back in grade school when Jennie was more included and inclusion was really new, she was invited to a Halloween party. I didn't even have to stay with her. She was never invited back to that girls house. For Jennie's 10th birthday, we invited several kids from her homeroom. Her teacher had recommended who should be invited. They ALL wanted to be invited. We swam in the high school pool and had pizza and cake in the cafeteria afterwards. Not one of those children has ever called or made any attempt to be Jennie's friend. These same kids still go to school with her and she is still integrated into some of their classes. What is wrong with kids now days? You'd think that there might be one or two that would want to reach out to a child like Jennie. Don't they realize that she has no friends or anyone to play with?? Does ANYONE in our communities? WHY aren't there programs for them? They CAN'T be in regular programs because they CAN'T participate. I won't have Jennie "watching" everyone else have fun! She must have activities geared to her level, otherwise, its not fun. In school they say that they don't discriminate and that Jennie can join any after school activity. What-cheerleading, ponpoms, basketball? Give me a break. These are the issues that get me upset. I don't care if Jennie can't read or write, or add and subtract. I do care though, that Jennie needs after school and summertime recreational activities. I recently had an argument with an attendant and the director of programs at our local YMCA. I got so angry that I called the Y director and complained about everything including the fact that they had no programs for Jennie. We belong, by the way. She was actually very nice and is going to meet with myself and Jennie to try and work something out!! She is thinking about a volunteer coming in to swim with Jennie. I am hoping to convince her to start a program for all the CD (yes, cognitively disabled)children in our area. It'll be interesting to see what comes of this. I guess it sometimes takes a tremendous amount of anger and frustration before I get angry enough to take such action. I do think that someday, though, there will be programs for our kids. Also day care for older handicapped kids. I just wish it would happen so that Jennie could take advantage of it too. Janice Daley (Jennie, 15+)

Subject: Re: School

Martha, Janice, etc

I thought the girl scouts had a program for including special needs kids -- I know I saw something about it here in Kentucky. Emily is too young, but I had planned on looking into it when she's old enough. I assumed it was nationwide, but maybe it's just here in Kentucky. Our Division of Parks and Recreation has a lot of after school and summer activity programs for special-needs kids (I don't know about adults). They don't advertise it well, because this was the first year we knew about it. In the summer, they offer a camp as part of ESY and have IEP goals, aides, etc. I was pleased with the program, but I spoke to the director about making it more integrated by including both "normal" and handicapped kids. We'll see.

There's also Riding for the Handicapped here which goes from age 3 to any age. There's a ton of support and volunteers for that program and Emily loves it. I've talked to the parents of some of the older kids and adults who have been in the program for years and who have progressed to private lessons and are riding really well.

Marianne

Subject: Re: School

Marianne, No Girl Scout program here that includes handicapped children. Our rec. dept. has no programs for the disabled. They say we can join anything they offer, but nothing is suitable. I suppose I could do private swimming lessons. Jennie did have horseback riding lessons for a summer, but it's a 45 minute drive.

Janice

Subject: Good School Programs/Services

Hi Everyone:

As we have read the various letters regarding good State school programs we were struck by the fact we will never find a "State" with all good or bad systems. It is the local school administrations mainly. We have found that the good programs start with the local principal and then depend on the type of staff reporting to them that carry the programs out.

Also,don't confuse services provided through Medicaid as school services. Medicaid, which funds a range of services, is funded nationally but are managed by States under State rules within the National rubric. Consequently, these Medicaid services will vary widely depending on the State's rules and availability of funds.

Carolyn and Fred Windbeck (Davidi 28 del+)

Subject: School

Dear Janice,

Right on, sister. When we moved to our previous neighborhood, Sara was three years old, and I was concerned that not only would she not have friends but that her behaviors would scare away kids who might play with her brother. We went to extraordinary lengths to get Sara known and liked. The first thing we did was install a sandbox, 8 x 10 feet, and put in it the greatest sand toys we could find. This was a real kid magnet and got lots of small children (our neighborhood was packed with kids, one of the reasons we chose it) at least in contact with Sara. I put a bench for parents next to the sandbox and made sure everyone knew that this was always open, whether we were out there or not. This sacrifice of our privacy (we had kids in our yard at all hours, playing in the sand. It was such a great sandbox that the older boys couldn't wait for the little kids to be called inside so they could get out there with their GI Joes and play Desert Storm. I am a pacifist and didn't like this, but I am willing to do what it takes) was a great one, but it did get both kids and parents a) not afraid of Sara; b) in a situation where they could watch her and learn about her on their own and c) be comfortable asking me about her. And of course they were all pretty much obligated to us because since I had to be out there anyway with Sara, many times they were getting free childcare, including snacks. We called this seducing kids to play with Sara, and it worked well while she was small. Sara wandered, with me in tow, to neighbors' houses and was invited in to have a snack or watch TV. Sometimes a neighbor would call me to say she had a video that Sara might like to watch with her kids. Sara was invited to every birthday of kids near her age during that time, including a memorable visit from "Barney." We had birthday parties for Sara at which I planned non-stop games geared to our guests, knowing that Sara does enjoy watching and would participate as she could. We built obstacle courses in the basement; we had treasure hunts with kids having to go from clue to clue (each clue's location was given in the previous clue envelope by a picture), we rented the pool at the Y for a swimming party and so on. This helped Sara and it helped me because the other moms came to know and understand what I was dealing with and offered me immense support. I could go next door and cry when I needed to.

We always invited Sara's entire class to her parties, too, although few of them came. We did not invite any of the regular ed. kids, although we probably should have.

Anyway, at the end of our five years at that house, our yard was kiddie wonderland, with a huge playset which had stairs w/rails instead of ladders to the playhouse and slide towers, and three swings instead of the normal two. We bought a baby swing for neighbors' use. In summer, we put up the biggest wading pool KMart had to offer, 20 x 2 feet deep and rigged her large Little Tykes slide into it. This absolutely assured "friends" for Sara at home.

We moved into our new house last September and it is a different story. The move was spurred by Jeff's new job and we had little choice of neighborhoods. There are few children here. We have the big sandbos again, this time just for Sara, it seems. Some very small children come to play very occasionally, but Sara is not too interested in them. We did buy a dog with Sara in mind, and they do love each other lots. Her brother plays with her a lot, too, but that sometimes degenerates into acting out and has to be discouraged.

There was a YMCA near our old house that made a real effort to reach the disabled community. It was fully accessible and had a private dressing room/shower for those who needed assistance perhaps from a parent of the opposite sex. They offered a free hour swim on Saturdays for all disabled people and provided volunteers to help. There were old ladies with arthritis (young ones too), kids and adults w/Down Syndrome, post-operative patients, etc. It was great. The other local Y, on the other hand, offers absolutely nothing, refuses to consider having Sara join their after-school program even just for the swim even with my offering to pay extra. I hate to be judgmental (actually, no I don't) but isn't the C in YMCA for Christian? How loving is this?

I may or may not put up my notice at school. I am going to offer to provide the PTA newsletter with a regular report from Sara's classroom, describing each child and suggesting ways to include them. So many people say they want to help, but their idea of help is to collect stuffed animals for Christmas gifts to our kids.

Martha

Subject: behavior management

Dear Gwen,

My daughter Sara, 10 w/AS, has had problems with biting and pinching, always when she is angry and/or frustrated. Because these kids have virtually no way to express negative feelings, I feel biting and pinching should be respected as a form of communication. Of course, on the other hand, you can't have a child biting and pinching. What we have done, which has virtually eliminated these behaviors--and I know this takes a leap of faith--is to acknowledge anger/frustration before the bite/pinch ("Oh you are so mad about this; this really gets you angry. We're almost done, and then we'll have a snack") and then--this is the hard part--if she bites or pinches, give absolutely no feedback. Don't say no, don't react at all except to remove the fingers/teeth calmly. Our children get very little feedback to their attempts at communication, so that even--sometimes especially-- negative feedback is better than no feedback at all. This is not just our plan, by the way; it was advised by a behavior specialist at the last national AS convention. It is truly worth a try. The rest of it is that you must react to positive behaviors as well, if not more than you have been "I like the way you're sitting in your chair. "). Hope this helps.

Martha Sprowles

Subject: behavior management

My name is Gwen Villarreal and I am a special education paraprofessional at the George Mason Middle School in Falls Church, VA. This year I am working with a female adolescent with AS. The specialist teacher and I would like information on ways to manage the student's negative behaviors, particularly the biting and pinching. Any information you can share would be greatly appreciated.

Subject: Re: behavior management Date: Sat, 07 Sep 1996 19:38:35 -0700 From: Jim & Janice Daley <jtdaley@execpc.com> Reply-To: angelman@tbag.osc.edu To: angelman@tbag.osc.edu References: 1

Development Associates wrote: > > My name is Gwen Villarreal and I am a special education paraprofessional > at the George Mason Middle School in Falls Church, VA. This year I am > working with a female adolescent with AS. The specialist teacher and I > would like information on ways to manage the student's negative > behaviors, particularly the biting and pinching. Any information you > can share would be greatly appreciated.

A few things worked with Jennie. One was redirection. Pretend that you don't even notice the negative behavior and get the child to focus on someting else that might interest her. Even if it hurts tremendously, try not to react. They are looking for your huge reaction of yelling, making mad faces, scolding, etc. - attention getting. Another technique that worked for us, was quiet chairs. We removed Jennie from wherever she was and took her into the kitchen and sat her in a chair. If she got up, we belted her in. We told her she would have to have a quiet chair for "biting or whatever and set the timer for 1 minute. We would leave the room and not look at her. Being alone and no attention from us, was bad enough for her. Then when the buzzer went off, we would let her join us and tell her again-No hitting, etc. If she did it again, she went directly back into her chair. Sometimes she had to return to her chair many times, but eventually she stopped the behavior for several days. She almost never bites, sometimes pulls hair and hardly ever pinches. She used to all of the above a LOT!! It is pretty to redirect teh kids if its to something they really like. Good luck. Janice Daley (Jennie 15+)

Subject: Ft Drum New York

Hi Sullivan's

Do you know anything about the schools that are around Ft. Drum??? As I said before we are trying to get reassigned and are trying to go some place that has a better education system for "special kids". One of our choices is Ft. Drum.

It is so had trying to figure out what the right decision is!

I thought you might know since you live in New York. If you don't know do you have a phone number that I could call?

Anything you could tell us about the area you be helpful. Thanks

Linda (Matt 4 del +)

Subject: RE: Ft Drum New York Date:

Greetings Linda, Matt and Family !

In response to your inqiry of below, I live about 60 miles south of Ft. Drum. There is/was a military family up there with an AS child. I will attempt to reach them and see what there experience has been.

One thing that has become apparent to us lately, is the fact that even "in state" programs and services available, can vary from county to county !

We have been considering moving within NY. That is how we are learning of the inconsistancies.

SUGGESTION: Locate within reach of a good College or University, (such as Syracuse) that have renoun programs for early education, special ed etc.... It appears that this has a strong influence on the community. We are considering moving to Rochester, (90 mi west), a relatively wealthier, high tech area, with excellent medical as well as educational foundations, we are learning that they are literally years behind, when it comes to special education, inclusion, etc !

I hope that we can help you, I'll let you know what we find out from Camp Drum..

Best regards,

Joe

&

P.S. Could the Red Cross assist you somehow ? just a thought..

The Sullivan's (Joe, Carol, Meghan, Matt & Molly)

Subject: Coralyn's program

In my school district, we: 1. Talk with the principal, then the Director of Special Education. You could go to a school board meeting present your case. 2. Document everything! Write letter and keep copies. Keep notes of all conversations and attemps to resolve the problem. 3. Try to be business like. Don't threaten. Treat people with respect. 4. You can file a formal complaint with IDEA - Call your DPI to find out EXACTLY what to say and include in your complaint and where to send it. They usually have to act within 60 days. 5. You can also file for a Due Process Hearing - you would file this if you disagree with the placement or you feel more services should be provided. You can request a hearing by sending a letter to your district's school board. The district has to pay for this hearing and they are very costly. They DON'T like tthisis what you intend to do and you might get some action. The hearing must come and conduct a hearing and issue a dicision within 45 days after the board receives the request.Coralyn's IEP. The IEP must include: Annual goals, short-term goals, amount of time in Special Ed. & related services, amount of time in Regular ed., and a few more details that aren't important for you now. Any change that is made to her program must be in the IEP. They must first have a meeting and get it all in there, then they can proceed. Then, if the IEP isn't followed, you cor you don't like what is in the IEP, you can file a complaint with Department of Public Instruction.

You may want to call your State Department of Public Instruction and ask them to send you some information on parent and child rights in special education. It pretty much outline what you have to do when you disagree with your childs IEP, placement, M-Team evals, etc. Good luck. I think what they are doing to you is awful! Aren't there any other handicapped kids in her school? We had to deal with a few similar problems in our district. Janice Daley (Jennie 15+)

Subject: Re: Coralyn's program Date: Sat, 07 Sep 1996 21:46:38 -0700 From: Jim & Janice Daley <jtdaley@execpc.com> Reply-To: angelman@tbag.osc.edu To: angelman@tbag.osc.edu References: 1

Jim & Janice Daley wrote: > > They DON'T like tthisis what you intend to do and > you might get some action. The hearing must come and conduct a hearing > and issue a dicision within 45 days after the board receives the > request.Coralyn's IEP. The IEP must include: Annual goals, short-term > goals, amount of time in Special Ed. & related services, amount of time > in Regular ed., and a few more details that aren't important for you now. > Any change that is made to her program must be in the IEP. They must > first have a meeting and get it all in there, then they can proceed. > Then, if the IEP isn't followed, you cor you don't like what is in the > IEP, you can file a complaint with Department of Public Instruction. > >I am responding to my own message to correct errors! In editing it, I left some parts in. It should read like this: "They DON'T like this. They must conduct a hearing within 45 days after the board receives the request." The rest should have been deleted. Janice

Subject: Re: Coralyn's program

Hi, Corinne,

Do you live in the state Washington? Ft. Lewis is one of our choices to get re-assigned. I can't believe people are so stupid!!! You should tell the DOE you want a home based program that includes therapy and a tutor while the DOE is waiting to place her. There are so many laws that protect our kids but learning them will take a life time, and no one in the DOE will tell you about them. Like you every decision we make revolves around Matt. I wonder if it will get any eaiser?

Linda in Hawaii

Subject: Re: Coralyn's program

Please keep up to date on *all* school issues. Things do not get easier as they get older. I'm in a for battle every time his class, teacher, bus driver, therapists, etc. changes. You would think that there would be someone in the school district who would really have a concern about your child's education. The best advice I've found was through our State Task Force on Education's local unit, that has meetings on all issues of Sp. Education. These meetings usually have more administrators than parents but they are informative. It's a mystery to find these meetings though, because so far, no one from my school district has ever made an announcement for them.

Corrinne, good luck.

Lisa, Mom to Matt 12 AS?

Subject: Coralyn's program

Janice, Hi, no they don't have any otherkids like Coralynn in the Blaine school district. They also feel this is the best program for her. I said I would rather have her in Ferndale because they have 3 special education class rooms, which just goes to show that they are much more experienced at this. Blaine then says " How do you know that being with other handicapped kids is better for her than our program? I can't answer that except to say I am sure anything is better than the program they are offering us.

the first thing I did when they told me they no longer had a program for my daughter and that my only options were two schools I had no intention of enrolling my daughter in was to talk to the principal. He said he no longer had anything to do with this and that I needed to contact the speech therapist she is now also the Special Ed Coordinator. Well needless to say me and Jan Polin don't have much to say to each other after the last two years she has worked with Coralynn. Last year I asked the teacher what kinds of things has Jan been doing with Coralynn and she said to contact Jan. I called her and now this was about 21/2 months into the school year and she said she hadn't gotten around to working with her yet. I asked her why and she said she hadn't worked with any of the kids yet. Now this is the same school that one day last year Coralynn was a 1/2 hour or so late from arriving on the school bus and I called the bus barn and found out that the bus driver didn't see Coralynn on the bus and forgotten she was there and was jusst about to park the bus for the night and she got a call from the bus barn guy. When she pulled up in my yard and I preceeded to confront her about this she flat out admitted it to my face. Back to Jan Polin. I called and talked to her about hte 2 schools and that I had no intentions of sending Coralynn there and she said she would see what she could do about Ferndale. I didn't hear from her until about a week before school started and she then set up a meeting saying she at that time had decided that they had a program for Coralynn in Blaine. that is when I was told about the plan I /e-mailed earlier. I have also contacted the Superintendent, the Superintendent of Schools in Olympia( our capital). I am now being told that I have no ground to stand on and she will go to Blaine unless I live in another district. So we are selling our house (for less than we know it is worth) and we will live in Ferndale so she can attend school there. But in the mean time she is not in school. My husband seels I have caused alot of this or at least that is how he used to feel. He in my opinion is not a fughter , I AM. Where we go from here is a touch choice. Corinne ( Coralynn almost 6 yrs. Del +)

Subject: Re: Coralyn's program

Hi Linda,

I hope it gets easier, or I'll have to learn to dael with all of this a little better. I find fighting with everyone is too stressful and I surtainly don't need that.

Corinne

Subject: Re: Angelman I.Q-LOUSY

Corrine,

Please look in your phone book and find your state's Department of Education and find out from them about your rights in Special Education, including your right of appeal. To my knowledge, most local Boards of Ed have to answer to the state and they should disseminate info about appeals. Unfortunately, it seems that no matter where one is, you have to fight for these "Rights"!

Deanna

Subject: Re: Angelman I.Q-LOUSY Program

Dear Everyone,

We are all so very angry at the treatment Corrine and Coralynn are receiving. Can we all send letters to her school district? I mean civil letters, not what we really feel, just to show support? We could tell them, since they seem to have no clue what Coralynn needs, what our kids are doing in school. There is such a variety of situations represented here, surely Coralynn's school district could find SOMETHING that would fit their budget and inclination. Since we can't all go with Corinne to the IEP, we could be there for her in spirit with our letters.

How about it, Corinne? Can we send letters to support you?

Martha Sprowles

Subject: Re: Angelman I.Q-LOUSY Program

I would be happy to send some input. This is what I mean when I say there needs to be written info on AS kids educational needs and requirements that can be given to school districts! It would be so much easier. Janice

Subject: Re: Angelman I.Q-LOUSY Program

Thank you to everyone who has replied to the school issue. My problem is that I have been fighting the school for a couple of moinths already and I am tired of fighting. Why does it seem that everything to do with Coralynn seems to be a fight?

Corinne

Subject: Re: Angelman I.Q-LOUSY Program

Sometimes it seems that all we are doing is fighting for what we know our kids need. I understand. Did you ask your doctor for a written prescription for the sensory integration? Are you fighting with the right people? Like Deanna says, your district answers to your state. The superintendent answers to the school board. You need to call your state Department of Public Instruction to get info on the procedure when you disagree with your districts plans for your child. Or call a lawyer who deals with these problems. Don't give up because then they won. Janice

Subject: IEP Book

I have yet another idea...(as if you're surprised)

How about a book about AS IEP's?

It would contain sample IEP's for boys and girls, all ages and levels, inclusion and not, montessori schools etc. Something to suit everyone. We could have an intro by a professional like Stephen Calculator perhaps and input from therapists, teachers and perhaps a section of observations by other children in the classroom. This could be distributed to schools, families, therapist etc.

I think this would be a great thing..Any opinions or ideas (hint hint Kathy and Alice) Let me know....

I think project planning is going to have to be part of my social work career....

Julie Hyman

Subject: Re: IEP Book Date:

Julie, I like the idea of representing lots of grade levels, degrees of inclusion, etc...It would make it easier to apply to many diverse needs.

Marianne

Subject: Re: Angelman I.Q-LOUSY Program

Martha, Maybe Art Anderson or Julie Hyman could put this info on their web sites under "Educational Needs" or "Things to put IEP"? We could all send them our suggestions. I myself can't do much on the computer besides e-mail and searching the web. I am trying to learn more now that Jennie is in school. This would be such a great way to help each other! What a neat idea!

Janice

Subject: Re: School Systems

Linda, Sorry to hear about all the trouble you are having again. I live in MA. and can honestly say I am very happy with the program my daughter is getting. I have never been denied anything. Actually, I've never had to asked for anything. Alyson(6del+) is so apparently special needs that there is no way they could say NO!. The only thing I don't like, is that she doesn't go to school in our town. She goes to school in the next town over. I wish she was going to the neighborhood school with her big bother, but I know this is best for Alyson. This year she is going into a regular first grade class, she will do all art, gym, music, lunch ,recess,and field trips with this class. She does go to her special ed. class for her therapies,and learning skills.I am very happy with this. Alyson loves to be with other children, and they are a great motavation for her. Although I don't know if there are any Army Bases left in MA. I did want to let you know that when it comes to school, I really can't complain. I hope every thing works out for you. Good Luck Laura Good

Subject: Re: Learning Abilities and Disabilities

>I don't believe enough attention has been paid to the physical/mechanical/neurological aspects >of AS and that too many features of this disability are ascribed to MR when there may be >maturation/strengthening issues which need addressing.

Hi Martha,

My daughter, Melody-Katie's mom- and I were discussing this just this very AM. We both agree that Katie's abilities far outshine appearances, but also agree that there is some degree of MR. The point that Melody made was this: most of our kids cannot be tested because the system to do so doesn't exist. She likened it to the need to make up special tests for inner city kids who do not "speak the same language" as the suburban kids for whom the tests are designed. Until more is known about what is actually going on with our kids, we can only try to give them the help that we as parents can see really does apply to them. I'm sure that all of us will probably have to fight some battles along the way to see to that!

Deanna

PS: I don't think there is a need to be diplomatic about asking for samples, that's what they're for. But " Do you have any starters of that rx?", might work. We're lucky, our pediatricians always ask if we have an rx plan, and almost always come up with samples when we say not. (We can apply rx costs to the Major Medical portion of our insurance, which is very good otherwise.) PPS: After reading your post about the gagging, I have to say that I think part of it may be some sort of abnormal reflex. This is why: when she was just starting in her Early Intervention Program and still retained her stranger anxiety, Katie would gag and maybe vomit and also pass a lot of rectal gas when she was frightened by being handled by therapists with whom she was unfamiliar. Later, for some strange reason, she would gag and perhaps vomit when only her Mom would put her coat on to go out. None of this ever really seemed to be under voluntary control and it has stopped now. Also, Katie REALLY hates nausea and vomiting-it is the only thing in the world that will make her whine and act sick, which she did not do even with her pneumonia and 106 degree fever last spring!

Subject: Re: Learning Abilities and Disabilities

Dear Deanna,

Because you are a nurse, I know you will understand when I use the medical term for my condition: I have a bug up my ass. My feeling about AS/MR/DD is that it's not really comparable to a so-called "deficit" in a cultural area: I mean, you can teach an inner-city kid what a yacht is so he can get that right on the SAT; god knows all I know about yachts is what I read. I believe AS kids can be taught what a yacht is, too, so to speak; just as educators had to figure out how to teach ghetto kids about experiences outside of their lives- -how to put that information in a way that could be processed and then the processing evaluated--I believe that AS kids, even if profoundly physically and neurologically disabled, can be taught just about anything any other kid can, WHEN we figure out how to transmit this information and put it in a package that the kids can use. I think a big stumbling block has been the insistence of everyone in power that the first and foremost characteristic of AS is MR/DD. I agree that some degree of MR/DD is probably present, if only as a result of those lost years of stimulation when we didn't know what to do.

I personally do not have a problem with the concept of political correctness. I do not want my daughter referred to as a "retard" or "crippled." I could almost be comfortable with "developmentally different." It's a lot to ask for the world at large to consider my perhaps over-sensitive feelings about how Sara is labelled. But I think we all agree that AS kids understand most if not all that is said in their presence, and I don't want Sara hearing things about herself that a. may not be true; b. are of no help to her personally if they are true; and c. obviously carry a connotation of devaluation.

Now about my medical problem: who do I consult, a psychiatrist or a proctologist?

Fondly, Martha

Subject: Re: Learning Abilities and Disabilities

Hi Martha

Your a scream! We would have a great time together! Hopefully I'll get to meet you someday!!!!!!

Linda Matt 4 del +

Subject: Regular Ed Classroom

Martha,

Yes, Ben is in a "regular ed" classroom in our public school; however it is a Montessori classroom within our public school. We have a very enlightened, very bright Special Ed Director, and Ben started in a pilot inclusion program when he was 3, before we even had an AS diagnosis. There were a couple of years when it didn't work so well (he was spending a lot of time out of the classroom riding his bike), but after a visit from Dr. Calculator, the school inclusion teacher worked hard to really make inclusion work for Ben. We revisit the program every year at IEP time, but so far the benefits far outweigh the negatives.

My only IEP goal for the past three years is a very simple one: Ben participating in the classroom 99% of the day. The 1% accounts for a very long period for Art Class, which he just can't seem to manage. Ben's dad was a real inclusion skeptic at first, but the cognitive strides Ben has made have really won him over:-)

Best wishes,

Jeanne [seltzerfam@aol.com]

Subject: Regular Ed Classroom

Dear Jeanne,

I love hearing about Ben's school. I am hoping to move Sara to a regular school in maybe a year or so. I want her for right now to be mainstreamed for more than the "extras;" I want to see how she does in an academic setting.

I have read several parents' being concerned that their children were only watching, not fully participating. This summer, Sara went to a regular YMCA day camp with her TSS. She took part in lots of activities at camp, but there were some things, like archery, which she could not or would not do, and she watched the other children do them. Given that Sara has learned so much from watching TV, I'm not so sure that just watching is as passive for AS kids as it would be for you and me. I know that Sara did not whine and fidget; she watched intently.

Martha (sara 10 upd)

Subject: Regular Ed Classroom

Martha,

When you're "ready" to move Sara into a full inclusion program, I'd be happy to get your school resources "plugged into" Ben's. There has been a lot of trial and error regarding Ben's program (this is ongoing I guess), but we are all constantly learning or in some cases "unlearning" because some of the old standard techniques just don't work with him. However, it is so very exciting when breakthroughs are made such as signing for "bathroom" or being picked by the other kids (and not last, either) for a relay team.

I am not a religious person, but I do believe in paying attention to the "signs," if you know what I mean. I was pregnant with Ben when we bought our first house, which just "happened" to have a room with built-in bunkbeds (which we later adapted for Ben), an inground pool (what do AS kids love most in the world?), a huge carpeted family room (which became a Ben-proof play area), and in a town with a wonderful, well- respected SPED director (I had no idea at the time). We basically bought the house because it kind of reminded me of my mom's house (at least in color). My mom had passed away the year before, and I found this comforting.

Maybe a lot of coincidences, but I do feel very lucky with how things have turned out in the long run...

Regards,

Jeanne (mom to Ben, AS, 9 years old)

Subject: Regular Ed Classroom

Dear Jeanne,

Thank you for the offer to help/advise. Our IEP is now scheduled or supposed to be scheduled for November (it was October last year) and I plan to let it be known that I'm looking at inclusion for maybe as soon as next year. Does it make sense to request that Sara be mainstreamed now into more regular ed classes (she has been going to music and sometimes art, plus lunch, recess, assemblies) to see how she does in a place where she really has to be quiet much of the time? Or is it better to just plunge in all at once? We live in a fairly enlightened school district and I don't anticipate any real resistance to Sara's being included. The problem is that our home school district is so small (one elementary school, one middle school, one h.s.) that Sara is being sent out of district (all of 20 minutes down the road) to a big new elementary school which offers so-called Life Skills classes. This means that when she is included, she will also be in a new school setting and will not know any of the kids, nor they her.

Would it make sense to request that she be included (or does one say "inclusioned?") in her present school first for a year, then move to the middle school the next year? I think that might work better. Her mainstreaming now is with the fifth graders.

I don't believe we're allowed to decide whether we're religious or not. I think your feeling comfort from the similarities to your mother's house was a form of supernatural love, and in my book, that's religious feeling, whether you ascribe it to God or excellent pharmaceuticals. I believe that the love we feel for our children must be sustained from something outside ourselves, some cosmic cloud of love out there for us humans to tap into as needed so we don't kill each other. It's so hard to know what to say when people tell me that they "don't know how I do it." I know it's not some old guy watching me from a cloud, but I also know it has something to do with the acceptance and respect we have for each other--I know I'm not good enough to be this good, if you know what I mean. Not that I'm all that good. I sort of lost it a while ago with that guy from the Netherlands.

Martha