Subject: Marianne-inclusion

Marianne Mosley wrote:

Janice, AMEN!!! Thank you for sharing your feelings -- I completely agree with you. I "lost it" at the seminar on inclusion at the Colorado Springs conference. It seems I'm always running into parents at AS conferences who strongly believe that full inclusion is the only acceptable choice for children with disabilities. And by only presenting that point-of-view at its conferences, I felt the AS Foundation sanctioned only full inclusion as well. I also met some parents who felt their children with AS had normal intelligence and with the right facilitated communication assistance could do the same academic work as their peers.

I tried to believe this about EMily and felt completely rotten because I just didn't see any evidence that Emily did not have mental retardation. We had even tried facilitated communication and it just aggravated Emily. While I do believe that Emily is much brighter than how she tests because of her inability to express herself, I don't believe she is capable of doing the same academic work as her peers and I think would be terribly frustrated and unhappy if forced to try. (One parent at the Colo. Springs conference said his daughter with AS, del+, is with her peers in a regular upper elementary class and does advanced school work.)

Before Emily entered kindergarten last year, I did more research on my own on inclusion and discovered there were respected educators who didn't agree with full inclusion for every child. And the more I thought about it, the more I realized that I've never believed that there was only one right way to do things -- that every child with adisability couldn't possibly follow the same recipe successfully. Life just isn't that tidy --or easy.

I decided to trust my own instincts and enrolled Emily in a self-contained class for a half-day (it used to be the class for the "trainably mentally handicapped" before they switched "labels" to"functionally mentally disabled.") She spends the other half of her day in a regular kindergarten setting with an aide. The regular class was difficult at first -- the other children kept their distance because EMily was pulling their hair. But by mid-year, one very sweet and nurturing little girl had taken Emily "under her wing" and was as much of an aide to Emily as the one being paid to be there. I know it made EMily feel more loved and accepted in the class. She did very well in special education too, making advances in walking, toilet training, and picture identification, in particular. As she continues on in school, I plan to continue this combination of special education in a self-contained setting along with opportunities to mainstream, although I suspect it will be more difficult in the later grades to mainstream as much as in the primary.

I'm sorry if I offended anyone, because I know there are many people who are very passionate about inclusion. And I'm sorry for going on so long. I've been wanting to get this off my chest since the Orlando conference. I've also been embarrassed for breaking down at the Colorado Springs conference and felt the need to explain why I reacted so strongly. I appreciate this on-line group so much because everyone seems so practical as well as accepting and respectful, even if we don't always agree with each other.

Marianne (mom to Emily, 6, del+)

Marianne,

I think you have found a good system for Emily. I believe that full inclusion is too much for Jennie too. It is beneficial for her to be with her age appropriate peers so that they can get to know her and she can imitate their behavior (although some of them behave worse than her!), but she has needs that can never be met in the regular classroom. When she was younger, many activities that took place in the regular classrooms, could be somewhat adapted for Jennie. The gap between her and her age appropriate peers was much smaller also. As she got older, it became increasingly difficult and to be honest, many of the children that took to her in elementary school, sort of shyed away in middle school. The newness wore off and they get so into themselves in middle school. The classrooms needed to be quieter and the work was harder. In music, they no longer had colorful books and instruments, the artwork in art class became more difficult and Jennie was more distracting because grades became more important. Math, reading, science, etc. was impossible. Even at recess, the kids just hung out in groups and talked and there wasn't anything for Jennie to do. Lunch was awful because Jennie gagged as soon as she smelled the food. So she spent more time back in her self contained classroom but more time in the community. Now in high school, she delivers lots of items, collects attendance, swims, goes shopping, goes out to lunch, stocks shelves in a food pantry, rides her large tricycle in the halls and gyms, goes to the weight room and jumps on a mini tramp, goes to nature centers, golfing, bowling, watches videos,etc. They video her a lot in school and send the tapes home for Jennie and us to watch.This next year she will go into the band room. I'm not sure what she'll do in there yet. She also goes into the shop class and mostly watches or is assisted by her aide. I made it very clear that Jennie must be kept active and not spend a lot of time "watching" everyone else. She does need her relaxing time at school too though. I am pleased with her program now. In high school, it's much more difficult to integrate. Regular kids help out in her classroom on a regular basis also. Jennie is happy and so are we. Inclusion is there for those that want it. I think we parents know our children the best and know what is best for them. I basically want Jennie happy, but not spoiled. She is capable of doing a lot but if an activity has absolutely no use in her life, why waste the time. What we would like for Jennie at this point in her life is home living skills, community skills, recreational skills, and a physucal fitness program.

Stick to your beliefs - you know Emily best! Janice Daley (Jennie 15+)

Subject: INCLUSION STORIES - AS SOON AS POSSIBLE

Hello everyone!!!

I am asking for help! We have our IEP meeting for Andrew on Friday. I would like to know anyone's Inclusion stories so I can print them out and take them to the meeting. I have Anita's story about Cole (if you would like to add anything, that would be great). Others would be greatly appreciated. I do have a speech/language pathologist very interested, and might join us on-line. Thanks a bunch and I'll let you know how it comes out!

Jodie Bodnar (Andrew, 3, del +),

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

To Whom this may concern, My son age 9, was for the first three years put in a segregated severe to profound classroom where he made liitle or no progress. Next he was placed in a full inclusion kindergarten class where progress was constant he learned his colors, numbers, shapes, sizes, his own name, to open doors, turn on faucets, sit calmly, cut with sissors and much more. In the first grade he was still full inclusion and his progress continued he learned to count, add, subtract, spell in fact out of 100 spelling words over about 18 weeks he got 80 correct on his test the way that it was done was his aide would hold up two or more word cards and ask him to show her that word ie dog, cat ect... his behaviour got constantly better, he stopped rocking, and many other bad habits i feel that this was due to peer presure, Christopher also started to communicate more ie eye gaze, picture board, talking ect.. For second grade he was placed half a day in special ed, and the other half in regular ed. During that time his rocking started back, he started having more toilet accidents, his behavior got steadialy worse at home and school in fact he appeared very sad and mad at most times. This last part of the letter is for the Educators of your child only. I have several videos of Christopher showing us letters, numbers, words, shapes ect.. in fact showing us what you would expect a child of his age to show you. With these videos you should be able to see what your AS child can do given a chance and how to modify it to where he can do it. I will only give it to the school if they call and ask for it then the school can give it to the parents. I want to do it like this because you as parents should not have to beg for your school system to look at something that may help them educate your child it should to them be a great honor.

The last thing that I will add is that Christopher while in public school had a full time one on one aide, an Alpha-Talker, access to a computer, a power wheelchair and a walker. Christopher recieved Speech three times a week, OT. once a week and PT. twice a week however, he needed all three five times a week. In closing remember a mind is a terriable thing to waste please do not waste this childs mind.

In Christ, Sam Henderson. "Remember not being able to speak is not the same as not having anything to say"

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Dear Sam,

Thank you for sharing Christopher's inclusion story. It (and you and Christopher) are an inspiration to me, and I can't tell you how I admire and respect your additude and devotion, not just to your child, but to our children, too. I'm going to print out your letter just so I can read it again and again.

And you're right; it should be an honor to be allowed to educate our children.

Martha (Sara,10)

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Dear Sam,

When I told Sara's TSS about Christopher's successes at school, she asked me to ask you what sort of teaching technique is being used. It seems that Sara's "instruction" consists of her being shown cards with colors, numbers, etc., and then being asked to point out whatever. The teacher finally acknowledged Friday that this was just constant testing, not teaching.

With Christopher's spelling words, for example, how was this list taught to him?

Thank you for all your help.

Martha (Sara, 10)

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Dear Martha,

Christopher , learned alot from TV and videos also during his full inclusion times he was exsposed to alot of work and hand over handed alot of papers and work. Christopher also has had a great deal of teaching done by asking questions another way is to ask him to fill in the blanks ie. abcd_fgh ect.. Remember also everytime that you ask a question and get any kind of response he is in fact communicating with you and that is our number one goal.

In Christ, Sam Henderson

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Hi Sam,

I cannot thank you enough for the inclusion letter you wrote. It not only gives me strong support for something I am so passionate about, but it also gives me great hope. Sometimes after "discussing" with the educators, I begin to doubt myself and child. People like you and the others on-line have helped me more in the last week (I've only been on-line for a week) then ever before. Just being part of something so wonderful truly gives me strength. Thank you so much!!! I'll keep you posted.

Jodie Bodnar (Andrew, 3, del +)

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Hi I'm Nancy, mother of Daniel age 3 (del- and upd -) I currently have Daniel in KenCrest Artman for preschool. Kencrest has 2 developmentally delayed children (including Daniel) and 6 ordinary children. This has worked extremely well for us because Dan receives his therapies right in the classroom while integrating and socializing with the other children. He has learned to eat with a fork, stand up independently, and play with certain toys appropriately to just name a few improvements. I believe that inclusion is the only way to go at this age. Our son can now run!!! He tries to keep up with the other kids.

I hope this helps with your IEP. If you need any other info let me know.

Nancy

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Hi!

When I first heard about including our son Seth, now 8 1/2, in regular school tears came to my eyes. Not because it was a dream come true, but because I saw the real developmental possibilities. When I first mentioned inclusion to the school administration, panic was seen in their eyes. They knew we were in our legal right, but the adaptation, cirriculum changes, parents arguements, teachers issues came to their mind. Now two full years after the first day of kindergarten, the school smiles when Seth bounces in. The children all love him, and cheer his improvements. He has been included in their birthday parties, and has even been invited to play with class mates (I paniced ofcourse!) Planning a program is not easy. So do your homework, and expect to continue to do your homework throughout the year. We have learned alot from Stephen Calculator, PhD. He has an excellent book out Fostering inclusion with severely disabled children...1994 Singular press (check the past ASF newsletter for the full title). We, the lower NE ASF group hosted Dr. Calculator in August, and can send you the lengthy handout we assembled. It really might help guide you in your mission, and has several areas of bibliographies. The cost is $7.00 to cover postage and copying costs (make the check out to S. Katz, 1002 Stratford Ave Melrose Park, PA 19027). Inclusion is parent and child focused. The more homework you do, the more reasonable demands you make, the more your child will receive. Seth now uses an AlphaTalker, and has a Boardmaker Program for our computer to make symbols. We have put together a library or portfolio of symbols for Seth to communicate to his classmates. Board books of the Hungry Catapillar, Brown Bear, Very Busy Spider, and others are used during reading. Repetition of words, symbols, and questions are essential. Good luck. I never regreted inculsion, and had little resistance from other parents (on the contrary-much support). We did receive a considerable amount of resistance from the speech therapist, special education department, and teacher though. They wanted Seth in Special Ed. But the ultimate choice is yours. We continue to make progress, and Seth's IEP goals are achieved consistently every year. Speaking about IEP goals...the majority of his goals are behavioral (Seth will sit in class or circle for longer periods), social (parallel play, or interactive activities), communication (Seth will match pictures, make choices, communicate needs), and physical (Seth will isolate forefinger for touch window, walk on different surfaces, climb, run, etc). Just the normal stuff you would expect any child to be able to do at that age, with out the academic expectations. Good Luck...Don't give up! ---Sharon Katz

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Sharon, I

'd love to hear more...When you met resistance from the special eduation community, how did you overcome it? Right now, we haven't had to make a hard choice because Emily spends a 1/2-day in a self-contained special ed classroom and a 1/2-day in kindergarten. And since the kindergarten program is only a half-day anyway, she's a full member of that class. In her special ed classroom, she gets the opportunity to practice a lot more plus more on-on-one time on stuff like picture identification, feeding skills, toileting, and games to build skills that aren't really appropriate for "typical" kids. She also gets community-based instruction which isn't done in the regular classes (even though, it should.) How has your teacher(s) adapted the regular classroom for Seth? Does he have an aide? When does he work on things that might be stigmatizing, like feeding skills and toileting? (Maybe he doesn't have those needs, but Emily does.) I've observed a really good inclusion program at an elementary school a couple of hours from us, but the whole staff was 100% supportive. My district is more like the way you described yours -- I think they would resist or at least not try very hard to make it successful. I just wonder how you overcame that because it sounds like Seth has had such a positive experience. Thanks for elaborating.

Marianne (mom to Emily,6.11,del+)

Subject: Re: INCLUSION STORIES - AS SOON AS POSSIBLE

Dear Sharon,

Jeff and I were very skeptical about Seth's inclusion success story two years ago and couldn't imagine it being good for him, or conceivable for Sara. We believed that inclusion would be good for very young AS children whose skills were not so very much below regular kids'.

That was before Sara got a TSS (therapeutic support staff) who works with her one-on-one in school and at home. Suddenly the issues of learning self-care, eating, appropriate social behaviors, etc., became less important as part of the school curriculum and more part of what she was doing at home. One of our objections to the idea of inclusion for Sara was that she needed to learn to do things that would not be taught in a regular classroom, like dressing skills. Now she's learning that at home, which is a more appropriate venue anyway.

We also had concerns about what if anything Sara could learn from more academically oriented schoolwork. Over this summer, we came to understand that Sara learns very quickly when something interests her, even complicated, sophisticated things. Her receptive skills have always been very high (she enjoys ballet on TV for example), so I don't know why this did not occur to us before now.

Anyway, we are at the point where we are eager to have her transferred to a regular classroom, even at her ripe age of almost 11. She is learning her "life skills" at home, and she is bored and non-cooperative in the other work she is expected to do in her special ed. class (match colors, identify coins, etc.). We are convinced that Sara knows her colors, ABCs, numbers, etc. and are preparing to videotape her with her brother to demonstrate her abilities as part of our ammo for inclusion.

I'm going to get Dr. Calculator's book. Is the handout the same thing Jeff brought home from the first day of the NE conference? If so, we already have it.

I am girding my loins for a battle. I mentioned to the New Hope-Solebury director of special ed. in conversation about something else that by the way, I want to start working toward moving Sara to a regular class next September (currently she is bused to special ed. in Central Bucks), and he started in with "well, we don't have any special ed. classrooms in our district, just support for LD kids..." He didn't even know what inclusion means. This may work in our favor.

Anyway, I want to thank you and Steve (and Seth) for demonstrating what can happen and how to do it, and thank you for being understanding and patient with those of us who were slow to catch on, and thank you for your kindness and energy in helping us do the work.

Martha Sprowles (mother of Sara, 10)

Subject: Inclusion

Hi everyone,

OK here is the deal. Matt is in a class room with one other student that has PDD (it's something like Autism) it is a self contained class. My problem is I want Matt to be around other kids that are "normal". I hadn't really thought about this until my friend Jodie started talking to me about her son Andrew. I never really thought about it before I guess I was to busy fighting with the DOE to get a grip on what a self contained class really was. Althought the DOE never offered an inclusion class as a placement.

I don't think Matt is getting anything out of the class with only one other person in it. I asked the teacher on Friday and she said they don't have to let Matt go into another class because he is not functioning at the same level as the other 4 year olds. Anyway I know that is bull!!!!!! But I did ask her if they had an inclusion class and this is what she said.

There is a class with normal kids and special ed kids together however, there is a wall between them and they only do recess together. So this is not inclusion right?

She also said Matt has to be doing 4 year old stuff before he could go into the other higher functioning special ed class. I told her that Matt was not going to spend his entire school aged years being seperated from the community and his peers.

The fact of the matter is Hawaii does not have inclusion!!!!!!!!!!!!!!!!! Oh boy just when the DOE thought they had me under control!!!!

Ok everyone explain how this works and how is Matt going to benefit from this? I don't quite understand how he will be getting anything out of this i.e. if the other kids are doing math, reading etc. I'm not against this but I guess I don't have enough information on it. And besides if I present inclusion to the DOE I'm going to have to back it up and god knows it will be a hell of a fight to get it so I want to be sure.

We don't want anyone to put limitations on Matt. We want Matt to have the same chances as everyone else does. Besides who really knows what these Angels can do or can't do?

My husband is very skeptical about inclusion and he doesn't understand how the hell this works. I'm not as bad but we do you to explain how it all works. I do know that Matt is doing great with the pic syms and has really blossomed during this past 6 months and we don't want him going backwards.

Please help us get a handle on this thanks a bunch We have a meeting with the school on 10-7 and I want to hopefully present this then.

Linda Mom to Matt 4 del+