Thursday, May 25, 2017

Finding a school for your child with disabilities: What you can learn from our journey, part two


This is the part two of our journey finding a high school for Max (part one is here).

One day in November, I went on a tour of the school Max was interested in going to mainly because his friends were there. It's a school mainly for students with Down syndrome, intellectual disability and autism. In many ways, it's similar to the school he is in now. Students are grouped by abilities, not age. The student-teacher ratio is 4:1, with a maximum of 12 students per class. I know parents who have children there, and they've all raved about it.

There are three vocational classes a week, a good life skills programs, meet-ups with students from other schools and a range of extracurricular activities. Students take regular trips into the community and to the local library. They have an excellent job skills program and a dedicated employment agency for graduating students. It was all good, other than the fact that Max would receive only one physical therapy session a week, not two, as is the school's policy no matter what a child's IEP.

As I sat waiting for my tour, I heard "It's Max's mom!" A former student from Max's class, one of his friends, ran up to me and gave me a hug. She was en route to cooking class.

"Are you happy here?" I asked.

"YES! Max should come here!" she informed me.

Max spent a full day at the school. When I returned to pick him up, I ended up standing in the lobby with the principal, the vice principal and a couple of staffers. A teacher brought Max over, who promptly burst into tears. He jabbed at the ground and said something.

"Max, what is wrong?" I asked. Then I realized he was saying, "I want to go here."

The principal reassured him that was very possible. The school accepted him the very next day. After that, Max started calling it his "new school."

I wasn't done yet, though; I still needed to see schools with integrated programs.

As the parent of a child with disabilities, you try not to project your own desires, wishes and wants onto your child. Yet even though Max had decided he was going to that school, I felt I owed it to him to check out ones where he would have peers both with and without disabilities, to prepare him for the real world.

Max has a good life, but between school and his activities, he exists in a special needs hothouse. He does not have friends who are typically developing other than Avi, a teen he hangs with once a week through a Friendship Circle program. Although I do not yet have a sense of what adult life will mean for Max, high school seemed like a ripe time to expand his existence. Dave agreed.

There weren't that many choices for integrated programs; our own town didn't have anything that was a fit for Max. I had our case manager reach out to another town's public school with an integrated program, along with a school that was not geographically desirable but I'd heard great things about.

I met with the program director and social worker at the local school (doing a school search can be a fairly time-sucking process, yet another reason why it's good to start early). I noted that Max had academic challenges. I also said he loved school, he was eager to learn, he was curious and he was amazingly social. They decided to have him spend a day at school and dropped him off.

Max would be in one of several self-contained classrooms solely for students with intellectual disabilities. Integration was relative; at this school and similar ones, it wouldn't have been possible for Max to have been in a mainstream class, even with an aide, because academically he is not at his peers' level. All classes in the school came together for lunch and electives such as art.

I picked up a very happy Max. He'd done well that day. But the program director told me he'd need an aide. Max requires someone to help with toileting, and no aide in the class would do that (pulling up and down pants: still a work in progress). Plus opening the bathroom door and other doors in the school would be a challenge—you needed to first hold up an ID card, then pull a big door handle and heavy door

On the way home, Max said he wanted to go that school. Within a few hours, though, he reverted to saying he wanted to go the other one, where his friends were.

In the next couple of months, I had a conversation with the head of a program at another out-of-district school that came recommended by a mom. The program was crowded and they were on the verge of purchasing a new building, but there was no guarantee things would be in place by September. After sitting next to a mom at an event and hearing great things about another program, I had our district send over Max's records to that school too. Our case manager got back a faxed letter that said, simply, the school could not "accommodate" Max.

I asked her what that meant. She did not know. Upset that Max had gotten turned down without a meeting, I called to speak with the program director and got her assistant on the phone—who explained the program was already at capacity and was not accepting out-of-district students. Ah. So it was a quantity, not quality, issue. I emailed the director and noted that it would be much more of a consolation to parents if she could just specify that in correspondence, rather than the vague "could not accommodate."

The worst rejection of all came from the far-off school. Our case manager said they had turned Max down because they felt their program was too "fast-paced" for him. I asked to know more. It turned out they had come to Max's class to observe another student, and that while they were there they had also done some sort of observation of him. Without my consent. Without talking with any of the staffers about Max, or with Max himself.

I was furious. I reached out to the social worker from that school who'd been part of the observation team and the head of the program, whose sole response was that I should be in touch with my case manager. I called the superintendent of that district and expressed both my disappointment that they had turned Max away, and outrage that they had done any sort of observation of him without my consent. She apologized, but didn't have more to say. I spoke with an advocate, which is when I learned the school had the legal right to reject him, although she wasn't sure that they'd legally had a right to observe him without permission. I chose not to pursue that.

While IDEA entitles every child to a free and appropriate education, every child is not an appropriate fit for every private school program," noted Renay Zamloot, a non-attorney education advocate. "Even though you believe your child may be a good fit for a program, the professionals who reviewed his file and observed him do not agree. They do not think he would receive an 'appropriate' education because it is not a good fit."

For a while, I was completely dejected, which is unlike me. I have typically succeeded in getting what is best for Max, whether at school, in programs or with his therapies. I felt like I had failed him, because in my mind, I did think an integrated program was best for him. Wrapped up in all of this were my anxieties about Max's future. I felt like my high-school choice would make or break his life as an adult. Rational? Well, not totally. But when are emotions ever rational?

It would take several things to help me accept that a program that had turned Max down as not being right for him likely wasn't right for him—and that sending him to the school he'd always wanted to was best possible choice.

First, I reached out to an academic higher-up I've long known and talked with her about what I'd been through finding a school for Max. She noted that she had cousins at the school in one of the programs from which he'd been rejected. Her cousins were not mainstream kids in that they were musical, artsy types and she said that the students there had not been very welcoming to them—a mindset that she felt would not be beneficial to Max. She noted, too, that integration is not always the right answer. As she said, "We want our kids to be as embraced as possible."

Then I had a heart-to-heart with my two closest friends over lunch. I told them about my desire for Max to have friends of all abilities. One of them talked about a friend of her daughter's who has intellectual disability. The girls have grown up together. But her daughter had grown increasingly distanced from this other girl, who at the age of 13 was still into playing with dolls. On occasion, the two hung out but they did not have much of a connection. I understood the point, even if it was painful to hear.

A few days later, I posted the same question in my local Facebook group and in one for parents of children with cerebral palsy: I asked if anyone had a student with physical and intellectual disabilities in an integrated program in a public schools and then I asked whether any of them had so-called typical friends.

One mother summed up the sentiments of many: "Despite being in inclusion classes since third grade and being quite friendly, he has never had neurotypical friends. Never been invited to a birthday party, never asked on a playdate. Our community talks a lot about inclusion, but the reality is closer to tolerance and often, they are just ignored—they exist alongside, but are not really part of any social groups."

Not a single parent said that their child had friends without disabilities.

It was a reality check, and a sign. Expecting any student to walk into any high school and make new friends can be a tall order; teens are clique-ish, and can be slow to embrace new peers. Expecting a new student with disabilities to be not just accepted by peers at school but be true friends would be damn near impossible, even for a boy as charming as Max.

And speaking of teens are clique-ish: Max wanted to be with his friends at the new school. He was being clique-ish, looking to be with his own kind, like any teen. Who was I to deny that to him?

We chose the private school for students with special needs. Max wasn't particularly excited when I confirmed it, as he assumed all along he'd be going there. He's already guided his grandpa to see it one Saturday morning (Max remembered how to drive there after just one visit). It's not far from where we live, so Dave and I will be able to juggle work and picking Max up from after-school activities. I will have to find other ways for Max to have those integrated experiences, although I'm still not sure how.

The other week, I went to a fundraiser for his chosen school. Some students sang; they sounded pretty good. Then I got to chatting with the mom seated next to me and I stopped paying attention to what was happening onstage. When the lovely background piano music stopped, I looked up to find a student standing up from behind the piano and taking a bow. I had figured a professional was playing.

During the drive on the way home, I thought about that piano player. I thought about the fact that Max would be at a school where students had a range of abilities, same as with his elementary school existence. Max would be challenged, motivated as always to do his best, and in good hands.

It was time to stop wishing for what I thought was best for Max, and embrace what truly was.

26 comments:

  1. Thanks for sharing your story. It took me a long time to accept that other kids would progress at a far faster rate than my son. As was mentioned, when kids are little the intellectual and social differences aren't so noticeable but as the years go by the gulf widens. Sounds like Max will be very happy at his new school!

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    1. Yes, the gulf widens, but with that comes acceptance so it balances out. And yes, Max is going to be really happy there, I know.

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  2. This was clearly an incredibly difficult decision for you, but I think you definitely made the right choice. There are so many factors, but Max's happiness and comfort in school is so important and I think he's going to thrive there! The inclusion issue is such a hard topic both for teachers and students...but from a student perspective, you cannot force kids to be friends no matter what their abilities are. Especially as they get older, kids gravitate to other kids who are like them and have similar interests and that's mainly who they are friends with. Good luck Max!
    --Kate

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    1. Thank you. It's so true, you can't force friendship at any age but forging new ones during h.s. can be particularly challenging. Max is definitely lucky to be entering h.s. with friends already in place.

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  3. Hi, I come from Italy, where inclusion has been the rule since the 1970’s. I myself went to elementary school with a child with DS, and both my children have had disable students in their classes. I came to the seemingly paradoxical conclusion that inclusion benefitted far more the typical children than the disabled ones. Typical children learn to normalize disability, instead of fearing it as a taboo, because it is integrated in their everyday life. They learn that different people learn in different ways, and that ought to be respected and actually valued. They learn to be patient and encouraging to a peer that takes longer than they do. They learn to appreciate that disable children often work much harder than they do to get their work done. On the other hand, I have never seen a real friendship developing beyond kindergarten. Because both myself and my children have grown up alongside disable peers, I don’t think this is due to prejudice or ableism. It is somehow “natural” for all of us to pick friends we deeply connect with, and intellectual disability can a major hampering factor. I always encouraged my children to be inclusive, but there is a point when you feel that including the disable child is closer to an act of charity than to a truly friendly gesture, and that is not dignified. A a typical adult, I don’t have friends with ID. I occasionally interact with intellectually disabled individuals, and my experience of school inclusion certainly makes that interaction easy and natural, and I am grateful for that. Friendship, however, is something different. It seems to me you did the right thing for your child. Good luck!

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    1. Yes, this.

      I can't connect as well to my peers because I have different concerns from their concerns. I may not be in AP anything, but I can talk for hours about my questions as to why this fear elicits more sympathy from others than that fear, which can be dull for someone who has little interest in understanding others.

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    2. Thank you for sharing your experiences. I was not aware that inclusion's a longtime practice in Italy, that is wonderful to hear. (I already have a special place in my heart for Italy, I studied in Florence when I was a junior in college.) I do know of friendships that have developed between students of different abilities in public schools, although it is definitely the exception, not the rule. I've always wanted to expose Max to a wide range of life experiences, including friendship of all varieties, but I have come to understand and accept that people do gravitate toward their own kind. And Anna, thanks as always for sharing your perspective.

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  4. I can't believe Max is old enough to be starting high school. He was so little when I first started reading your blog.

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    1. Trust me, I can't believe it either. Max was five when I started this blog. It is so wonderful you've been with us all along, through his many phases and personal and developmental growth!

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  5. MAX IS STARTING HIGH SCHOOL AND I'LL BE A SENIOR????!

    WOW

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    1. I didn't realize you were going to be a senior! What are your plans for college?

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  6. It's not easy. As I wrote in a post (http://www.meriahnichols.com/the-case-for-special-ed/), I was COMPLETELY into integration for Moxie until I remembered how it felt for me to be the only deaf kid in class, every class, throughout my school career. I also remembered how it felt to finally hang out with other deaf people and how absolutely thrilling that was, how relaxing and just... like a dam broke around my heart and joy flooded out.

    I gained a solid ability to interact with the hearing world through being integrated, and yes, ninja lip-reading skills. But I'm not sure the isolation and the loss of self-esteem through the isolation (and always being the last to figure out jokes or what was being said) was really worth it.

    I'm glad to hear about your choice for Max's school - if he's with his friends, that's awesome. It sounds like a great fit!

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    1. EXCELLENT perspective/post, it should be required reading for all parents. Thanks, as always, for being the voice of reason, Meriah.

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  7. I've been reading your blog since Max was just a tyke. I can't even believe he is old enough to go to high school already! I have an observation that I hope you will take as food for thought and not criticism at all. I know that you really want to push for Max to be more verbal and for the school to spend more time on his verbal skills. But his speech isn't understandable by neurotypical kids and I think that makes them uncomfortable. It's hard to know what to say when you don't understand the person talking to you. I know that Max can and does use the iPad for communication, but I feel like you discourage that a little, in the hopes that he will start to have recognizable speech if you keep going to therapy and making that a primary goal. But the primary goal may need to be adjusted a little to be "I want Max to be able to have conversations with people when I'm not next to him translating everything he says" No teenager wants their Mom or an aide hanging around all the time to translate. I know that Max doesn't quite have that embarrassment thing most teens are struggling with. But a bit of independence as a Freshman might be good for him. I'm glad you picked a school that you both feel happy with. He's a great kid and you're a great Mom. I know that whatever you two decide will be the best thing for him.

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    1. I totally get what your saying. As a teen It'd make me really uncomfortable if I couldn't understand what someone was saying and even if they had a machine that talked for them or an aid, I still wouldn't feel comfortable or natural approaching them, especially if I was with my other typical friends. Like you said Ellen teens are cliquey and it's difficult for anyone to get into an already established clique, especially if they are so obviously different than the already established members and have trouble communicating. I think one thing that you may have to come to terms with is that he may never have a substantial relationship with someone who's not disabled, and that's okay. He'd be just as happy with just disabled friends, maybe even more so. It's definitely better for him to be in a group of his peers who have similar challenges and experiences so he can relate to them.

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    2. Anon 1, thanks for being a longtime reader! I honestly do not discourage the iPad as a means of communication, because I am fully aware it is the only way for others to truly understand what Max is saying. It's Max who insists on using his voice, and will only grudgingly type out words. I had a really great discussion with his speech therapist at school recently about encouraging Max to better grasp/care that people don't understand him, a goal we will be working toward. I definitely do not want to keep this gig as Max's translator, and what I want is exactly what you said: for Max to independently communicate when I am not around. Anon 2: People have always said "As long as he's happy, yada yada." And of course I want that for him, but I've also sought to expand his horizons. Friendship may be one area where he will not have what I consider a diverse experience. And I am coming to terms with that.

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  8. I was mostly main streamed in high school but my friends mostly had a disability

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    1. Good to have your perspective here, too, Vickie. Thank you.

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  9. I am SO IMPRESSED by how many options you have for schools where you live. We have essentially zero options in the western Atlanta suburbs. We have to go to our assigned public school, and if the school isn't a good fit, then after a month or two of attendance you can petition why the school isn't a good fit, and then try to choice yourself into another school, and if you choose to go to another school, you lose bus privileges and things like that. We also have zero private school options accept for one school that is 30,000 per year, an hour away, and pretty unimpressive looking.


    Paige
    http://thehappyflammily.com

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    1. I know, we are fortunate to have options, we live in a pretty urban area. I will be the first to say don't judge that school by its looks, because several schools I've looked at that were good schools were really old and dated. You likely wouldn't have to pay that tuition (as if that is realistic for a parent to pay!!!) because if a school is not the right fit, the district would have to pay for one that is and you could make the case (if it comes to it) about why that school is the right fit. It may involve an attorney. But Paige, you will cross that bridge when you come to it! Who knows, options could change years from now and new programs could start.

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  10. My daughter graduated from high school last year. She has a speech and intellectual impairment. During high school, she was involved with a group called Peer Buddies. This group joined together neurotypical and differently abled kids. All of the kids would meet before school every two weeks to socialize and plan events. They would all go out to dinner before homecoming and turnabout dances. They would go to school sports games and plays together. Bowling and pottery painting get togethers outside of school were commonplace. The buddies would attend all practices and games of Special Olympics basketball and track. These buddies would motivate my daughter better than any coach ever could. I will always be amazed at the genuine interest the buddies have to develop and enrich friendships with differently abled kids. Like one mom of a daughter with Down Syndrome stated beautifully, "It all begins at the knee". Meaning, parents need to teach and nurture their children to be compassionate and accepting of EVERYONE at a very young age.
    Knowing how important buddies were for my daughter, I pushed to include the Peer Buddy program to the Transition program she now attends. It has been instrumental in her being able to form true friendships. I regularly get calls from her buddy friends saying they miss and would like to get together with my daughter. They pick her up and do something fun for a couple of hours. That is not because the buddy program requires it or because someone is watching. They do it because they have developed a true bond, and that is......priceless!

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    1. Congrats to both of you on her graduation! OK, Peer Buddies sounds awesome, I just Googled. Are you guys in CA? It looks to only be there. Max does have a buddy he sees once a week, but I love that this is more regular and involves activities/social events. Were you successful in getting Peer Buddies implemented in her transition program?

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    2. Yes, the school district agreed without hesitation!
      We live 30 min outside of Chicago. The Peer Buddy program is local to this district. A neighboring district has a similar program with another name. It would definitely be worth starting something in your district.

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  11. Though based in the UK it's great to read your experience. Finding a school is tough, stressful and unfortunately going to get harder. Thanks for sharing your insight x

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    1. Now that we are over the hump of finding a high school, it seems like smooth sailing for a while. I hope?! Thanks, Nadine!

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  12. Sounds like you, Dave and Max have made a good choice. I don't know of any inclusive high schools in my area. There are some private special ed schools, but you have to show that your local district can't provide FAPE. My current goal for Luke's first year of high school is to keep the school focused on academics (he had recently made some huge leaps) and life skills and hold off on the job skills (i.e. cleaning!).

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Thanks for sharing!



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