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Thursday, March 15, 2007

To integrate or not to integrate

There is a current trend towards integration of special needs children into the mainstream. If you had told me this a year ago, I would have said, hurray! That’s great. But after having lived through a very bad integration experience with my very bright, very disabled child I would not have the same response. Integrating a child with multiple disabilities into an environment that is under equipped and understaffed to handle them is NOT a good thing. Here is our integration story and how we changed from wanting her integrated to seeing the benefit of her being in an all special needs school.

Early Intervention (EI) ends at age three. At that point the school system is responsible. For the uninitiated, early intervention includes services such as physical therapy, occupational therapy, and speech therapy, which are delivered in the home. The philosophy is that the child is so sick and or so vulnerable to viruses and infection that it’s safer for them to be home. It’s a hard thing when early intervention ends.

For me it meant that Ellie’s services would end and if I wanted to continue them for her I would have to get them elsewhere and since we are not independently wealthy outside my home. When Ellie was three she was signing several signs and understood many signs, she was making progress with her physical therapy. She had built relationships with some of her therapists and we had a therapy area set up for her with a big mirror hung low by her abc mat on the floor and all her props. These included a sensory bin with beans and objects, shape sorters, big knob puzzles, lycra stretchy fabric that we used to swing her in for vestibular development. It was great. It was hands on. We were there to make sure the therapists were doing a good job and we could be an extra set of hands, learn, and translate Ellie speak to them.

Towards Ellie’s third birthday Ellie’s EI coordinator started to prepare us for the transition to school. She told us that the school would want to put Ellie in a special needs classroom that was 45 minutes away. My knew jerk response was to this was, “Over my dead body!” 45 minutes away? You must be joking me. There is no way I would let Ellie’s precious early days be spent in a car that much of the time and so far away from us and the hospital.

At this point in time, Dave and I had read in a few places that it’s better to integrate disabled children with typical kids because the typical kids help bring them along. There are studies that show that kids in the special needs environment have a lot of down time where they are not being stimulated. Even if there is a high ratio of teachers to children there is still more down time than in an integrated classroom where the other kids are yapping away all day and providing endless stimulation for your special needs child.

We found this a persuasive argument on top of the fact that my EI person was clearly in bed with the school people and got my back up about it from the start. Come on people, my daughter has CP and can’t keep herself sitting up on her own. It makes no sense to subject her to an hour and a half of drive time each day. AND she is only 3! I was so not on the same page with any of that. And will never be as far as the drive time goes. So we went into the whole process with this bias against non-integrated programs.

The next phase was having the school come in an evaluate Ellie. Charles Fox at Special Education Law blog has a lot of info on this whole process if you are going through it. And if you are going through it, hang in there!

The school psychologist came to our house and did not impress us. Ellie clearly did not impress her either. She came in with this huge bias against Ellie, that much was clear. Her evaluation of Ellie was very poor in that she did not accept an eye gaze as an answer. She held objects so far away Ellie could not reach them to pick them. Ellie has cerebral palsy in her arms and hands too so when she reaches to pick something she will first get her hand on the thing and then finger walk her hand to the thing she wants. She is not accurate upon first touch in this manner. The school psychologist would pull the board Ellie was picking from away and say well she certainly doesn’t know that.

She then informed me that the fact that Ellie knew her entire alphabet and colors and shapes was of no consequence because Ellie should be doing more imaginary play. I then demonstrated how Ellie did do imaginary play with my help. Ellie is a quadriplegic. So OF COURSE I help her with the imaginary play. I act as her arms and she directs what her dolls (Maisy, Tigger, Raggedy Ann) do. After a quick demo that left Ellie giggling and engaged the school psychologist’s response was, “Hmph. Her life is just like one big video game.” I was too shocked to respond.

There was another younger therapist there helping with the eval and at times they were both talking at Ellie at the same time asking her to do different things. It was incredible. It sucked. It was ridiculous and gave them no information about Ellie other than making it painfully clear that Ellie did not hold up well to this sort of bombardment. Ellie got upset and overwhelmed as did I. At the very end the school psychologist stood up. Hefted her bag of tricks over her shoulder and said, “Well, I can see, Ellie is a lot of work.” To which I replied, “Aren’t all children if you are doing things right?” I was furious. I started to worry about integrating Ellie into an environment that listened to this school psychologist as a source of expertise.

Before this wonderful experience, Dave and I got our first clue that the school down the road might not be the best place for Ellie. The summer before she turned three we set up a meeting with the head of our local preschool. We wanted to give her a heads up that Ellie was coming, she had special needs, tell them we were excited about her starting and wanted to help with the whole process. We thought we were being courteous and helpful. I entered this meeting with an open heart and got a very chilly reception. From the start it was clear that we were taking up this person’s valuable summer time hours. At the very end of it the head of the preschool said, “It may be that our teachers are not equipped to teach Ellie.” We should have heard that more loudly. I don’t think I believed it. She wasn’t being super direct. She said it may be, not it is. My denial had some food there.

I had to drop some papers off after that. I went to the school myself. I walked the halls of the new building and was wistful. I wanted my little girl to be there running around with the other kids, blond curls flying. That little girl of course does not exist, but I miss her sometimes. I also, felt sure they would not integrate her and Ellie would not get to be in this shiny new building. Looking back I think my gut level sadness in that moment was more due to some sort of premonition that Ellie would suffer there. I was also clearly having one of those moments of grief over everything that happened in general. Facing yet another difference in our situation. Hoping there would be a way to make it all more normal, like everyone else. I wanted her in that school 5 minutes down the road. All of this did nothing for my clarity of thought in piecing all the clues together that this may be horrible for Ellie. And not knowing any other alternative other than the school 45 minutes away…

Even our communication enhancement expert I wrote about here and whom I respect and trust because he truly cares about these kids said he was not for across the board integration. I didn’t listen. I didn’t want to hear that. I was afraid. If she is not in the shiny school 5 minutes down the road, she will be far away in a special needs classroom that will be dirty and the kids will be scary and she will be left sitting there to rot all day. That is what I thought.

At least down the street Ellie was safe- right?
Way wrong.

At the end of our IEP discussions, the school integrated Ellie. They said they would give her copious amounts of therapy, assistive technology and integrate her into the life of the school. They did not deliver on even half of all of this. Their idea of assistive technology was a bean bag. Yes, let’s put the kid with no balance, and no strength in a bean bag. Oh and if she doesn’t like it because she is not supported properly and is not feeling safe we will make her sit in it more each day as punishment for her resistance. Therapies were cancelled more than they were given due to “meetings”. The classroom swirled around her, berated her, and no one understood her. Ellie suffered there. When she was suffering the teachers and her one on one aid decided she was being a bad girl and that she would just have to become more tolerant. She would have to adjust to them not them to her. When she did not want to touch things they forced her to hand over hand. Her Individual Education Plan (IEP) was written very poorly and was a clear indicator that the professionals at the school were in over their heads.

Ellie’s integration experience was horrible. She regressed from it. She got more aversive to new things. She became wary of new people. She hurt and was hurt. I was responsible and pulled her out after 4 months of it. We tried. I was there helping even though they didn’t want me there. Then I let them have her for a month because they said I was in the way. I came back after that and found that they were forcing her to do things. She came home with bruises. The OT did not know the basic cerebral palsy terms. She let Ellie’s head drop on a hard board when she was positioning her. That was it. It was NOT safe. It was NOT the right place.

We left in defeat and sadness. I didn’t know what would be out there for Ellie after that. I set up physical therapy for Ellie through our insurance. I had quit my job to be home with her and she got to heal from her encounter with school. She grew and got stronger and stopped waking up screaming at night and became happier. We gained ground again.

At this point I was more open to Ellie being in a special needs classroom. I truly believe that most of the professional educators at the school had good intentions. But now seeing a special needs environment I realized that they had neither the time or the equipment or the experience to meet Ellie's needs. The head of the preschool during our summer meeting had told us that they had only 2 kids with cerebral palsy over the last 5 years. The school psychologist told me she had only evaluated a couple of children with multiple disabilities in 20 years time.


I checked out three other schools at the point. One was private and one outside the collaborative and one in the collaborative. A collaborative is a conglomeration of school districts who pool resources to address special education. It’s cheaper to do this then send a child outside.

The private one was the best but a 40 minute drive. There was another closer special needs classroom one town over that was great and the teacher was good and the person who ran the program was excellent. But they were full. I even went to visit the school’s recommended special needs classroom (within the collaborative). I brought Ellie and it took us 50 minutes to get to it in the middle of nowhere. There the lead teacher stressed how it was a nice break for the parents and how they were really good at repositioning the kids throughout the day. She pulled out a dusty dirty antiquated switch as proof that they had their stuff together. I did my best to check it out. But it was actually very dusty and dirty and had very little equipment. However there was a ton of staff there when we were. It was obvious they were giving us the full court press. I didn’t trust them.

Luckily for us the summer after our bad encounter with the school a new director of special education was hired and she was enlightened and educated with multiple degrees centered on teaching children with disabilities. It was clear she had compassion for our situation. She was capable of doing the right thing. She actually listened to me. That changed everything. What a breath of fresh air.

In the mean time our dear friend Kelly suggested the school Ellie currently goes to. I never would have thought of it because I did not think Ellie would qualify. It’s a famous school. It’s a well-funded school. It’s a wildly successful school for kids with multiple disabilities. Children go to it from all around the world and it is a 17 minute drive away. When I mentioned it to new SPED Director she was open to it and got on it immediately.

Ellie is now there as reported. She is not integrated. She is the highest functioning kid cognitively in her class. There are four kids in her class and one teacher and two aids. Everyone we have met there is amazing. They all sign to Ellie and project joy at seeing her. There is an open door policy, as they have nothing to hide but excellence. They are finding ways to get other kids closer to Ellie cognitively to interact with her. Today Ellie was actually happier when she got to the school than she was in the car with both mama and dada. That is a FIIIIRRRRSST. Wow.

If you had asked me 2 years ago if I could picture Ellie in a non integrated classroom in a non integrated school, I would have said no way. I wouldn’t have been able to conceive of it. I regret that I was not open to it. The signs were there. People like our communication expert were trying to give me a clue. There were many messages from the universe telling me that the school down the street was not the right place for Ellie. I was blinded by my own fears of the special needs community and wanting Ellie to achieve the best outcome. In my fear of what the special needs community would be like – I stayed far away from it, to Ellie’s detriment. I think also, if we had never tried to integrate her we would have been wondering if we had done wrong by her not to. In truth, at 3, she was not ready to be away from us and outside of the home. At three she had just completed her first 6 months of no hospitalizations. She had a lot of catch up to do in terms of play, being home and relatively healthy, and getting spoiled by her mama who had been working until then.

I guess I had to know.

I am glad I learned and overcame my fears and biases. Ellie is not just in any special ed class. She is in a great special ed school. I am glad I looked and fought and in the end did not have to fight as hard as I thought due to the new town Special Ed Director. Being involved with this new community and seeing the love and care they give to all the children makes me well up every time. Today I almost cried three times in seeing Ellie laugh, be respected, and seeing the enjoyment on her teachers and therapists faces in interacting with her. Before we found this school I thought there was no where for Ellie and that made me sad. Seeing that we found a GREAT place for her makes me cry with relief even as I write this. What can I say, I cry at weddings too.

Seeing the staff meet Ellie where she is at and seeing them respect her completely I am so glad that we are there. I am glad we found the right place even if we took a wrong turn along the way. I wish I could have spared Ellie her stint in the integrated classroom. But I also can’t go back.

For other parents facing all of this, here is some unasked for advice. Keep an open mind about integration and non-integration. The key is finding the right environment for your child. It may not be the public school. It may also not be the special needs class an hour away that is within the collaborative. But keep looking. Ellie’s time out of school was good for her. It was good for me as well. We made tons of progress. So much so that I truly feel she is ready to be in school. She is ready for more than I can give her.


Stick to your guns about the really important things. And hear the little cues from life all around you telling you if something isn’t right.

15 comments:

Lori said...

Kathryn,

Thank you so much for sharing this experience. I found it fascinating as a parent and as a former teacher. You were so wise to trust your instincts and to keep looking.

All schools, not just special needs schools, are not created equal. So many things go into building schools with highly qualified, conscientious professionals. Some of the best schools I have ever seen have not been the prettiest, or even the best funded schools. It has everything to do with the people running the school and the philosophy behind it. It made my blood boil when I read your description of Ellie's integrated experience and how she was expected to adapt to her environment, with no give and take. That just sickens me especially when we are talking about such a young child. I don't believe in that sort of philosophy even with "normal" kids. Yes, as kids get older they do slowly need to acquire the skills to adapt to their environment and to cope- but only at a developmentally appropriate pace. And as a teacher it is ALWAYS your job to continually explore ways to make your classroom a place where all children can thrive and learn.

She is still so little. She should be surrounded by people who will nurture her and smile at her and cuddle her and applaud her every success. In my opinion that's what all children her age should get at school, but ESPECIALLY a child like Ellie already coping with more than her fair share of challenges.

I also thought it was poignant for you to admit that you "miss" the little girl she might have been. I think that allowing yourself those moments is important and healthy.

Ryn Tales said...

Lori - great comment. I wish all teachers thought like that. They don't and it takes it's toll on the kids.

When I wrote the part about missing the little girl Ellie should have / could have been I thought of your twin stars. Loss is loss. It used to happen more when she was first born but it still happens. Those moments when I wish and see in my mind's eye this healthy, happy, pain free little blondy boots running up to me saying mama. I don't know if Ellie will ever say mama. I don't know that she will ever run. Some days that really gets to me, the sadness is overwhelming. Then she looks at me and nuzzles in and I am glad she is still here. Not running, not saying mama but loving me and letting me love her just the same.

Thanks for your great comment. If there is any moral to our story it is to keep looking. All of the other kids in Ellie's class have families that moved to our state to go to Ellie's school.

We lucked out. We moved across the country to live here for the medical care and ended up living near the school. A two for one.

;-)

Hugs to you,
Kathryn

Jacqui said...

Hi Kathryn,

When I logged on your web-site was advertising an australian support group for prems - strange. I don't really understand the whole google ads thing anyway.

I'm glad that you have worked out what is right for Ellie. We do things a bit different in Oz as most kids no longer go to kindergarten - they go to day care which has kindy incorporated. A such, children with special needs actually start "school" 2 years earlier than normal kids. When Moo turns 3 he will be undertaking one or two sessions a week at the special school. We expect that he will be mainstreamed when he starts prep in 2009. Fortunately, the school he will be going to has already had children with CP so hopefully it will be been there done that. I don't know if you have seen but Jodi over at Reimer Reason is doing her top 10 advocacy tips. She was up to number 6 last time I saw.

L,
Jacqui

Emma said...

I started writing a comment on this but it turned into something of a book so I will save it for my blog. I'm really glad that Ellie has such a great school and I wish that I had had one too. And as for grieving, I sometimes grieve for the able-bodied Emma I could have been, I think it's natural. Love and Hugs, Emma

attack of The Mouse said...

Wow!! Thanks for sharing. I can't stop thinking about those teachers at Ellie's Intigrated school. That is just plain wrong, and don't want to beleive there are really teachers out there like that. I'm happy to hear you are in an awesome school situation. Little Ellie is lucky to have you for a mommy.

Lisa said...

When I was in grad school (where I specialized in teaching kids with 'severe/profound' disabilities, my university was largely biased towards full inclusion. In theory it is a great ideal. But then when I would go out into the schools for my practici and student teaching, I saw how it often all went to hell for these kids. They were not getting the technology and therapy that they needed, their one on one paras did nothing with them all day save the bare necessities of eating and changing them, no one had their shit together as far as augmentative communications for these kids. In some classrooms, the kids were disrespected. In practice, the thing I was required to do by the university was just not possible given the set up of the general classrooms. I just felt like, special ed is stupid trying to be more like regular ed. Regular ed needs to be more like special ed. And it is the most significantly disabled kids that are suffering the most.

All this is to say, good for you for fighting for what you knew was right for Ellie. I will always say this, parents know best, they know their kid and they are the most important person on the team. Continue to trust your instincts with her.

And, oooh, that psychologist pisses me off. With a kid like Ellie, who was three years old, the psych eval should have been almost entirely about asking you questions, observing you and her interact, and perhaps suggesting activities for you and Ellie to do together and then getting your interpretations about her performance. You don't just waltz into a home of a 3 year old non verbal kid with multiple disabilities and sit down and have her perform for two hours for a perfect stranger. What a dumbass.

Okay, that is all. I'll shut up now.

Andrew Livanis said...

I am sorry that this process has been so horrible for you. Many people will come along touting "inclusion" as the panacea for all children's problems.

Inclusion should not be a "one-size-fits-all", but it is a "depends" question. Is inclusion right for your child? It depends on the staff, the environment, the training that the staff has to deal with your child's needs, the training the district is willing to give staff to deal with your child. It also depends on you and it also depends on your child - how comfortable is she?

As for your school psychology experience, I am very sorry, and feel embarrassed since I am a school psychologist myself. The only advice that I can give is wait for the report, and if you disagree with it, then it is within your rights to request an independent evaluation.

Hope all works out well.

Andrew Livanis said...

I am sorry that this process has been so horrible for you. Many people will come along touting "inclusion" as the panacea for all children's problems.

Inclusion should not be a "one-size-fits-all", but it is a "depends" question. Is inclusion right for your child? It depends on the staff, the environment, the training that the staff has to deal with your child's needs, the training the district is willing to give staff to deal with your child. It also depends on you and it also depends on your child - how comfortable is she?

As for your school psychology experience, I am very sorry, and feel embarrassed since I am a school psychologist myself. The only advice that I can give is wait for the report, and if you disagree with it, then it is within your rights to request an independent evaluation.

Hope all works out well.

Billie said...

Oh my goodness, there is SO much I have to say on this issue. I'll work on a post to put up on my blog.

Holland and Eden turn three this summer, so this is a huge up and coming issue for us, and being the totally gray person that I am, I can see both sides.

On one side, I can see all the amazing benefits inclusion can have for all involved in an ideal setting where everyone is invested in making it work.

On the other side, I am a school psychologist working in the public schools, and know exactly how ill equipped they can be.

I have been struggling with this as a school psych trying to do what is right for kids, and now, as Eden's parent, I struggle even more to find the balance between pushing people to adapt and fighting for my ideals, and accepting the system for what it is.

Oh, I feel so overwhelmed at times...

Billie

P.S. One bad apple (school psychologist) does not spoil the bunch. Often times, they can be one of the best advocates for your child. I have only evaluated one or two children with multiple disabilities in my 6 year career. I approached those evals in the same way I would with any child, with respect for both the family and the student. My goal in any evaluation is to help the parent and school staff determine what the child CAN do, rather than focusing on what they can't. So many times they surprise me, and I LOVE it!!!

Ryn Tales said...

To Billie and Andrew,

I understand how it feels to hear about someone in your same profession really making a balls of it as the Irish do say. I feel the same way when I see really bad organizational development work going on.

I think you two should meet each other in cyber space that is. Andrew - great website too. I checked it out and will be back. I appreciate both your comments and wish that I had gotten to deal with someone of your caliber for our first school experience!

Kathryn

Laura said...

I think you made the right decision for Ellie. Just make sure she continues to recieve the support to reach her full academic potential. This is sometimes harder in junior high/high school when special education teachers aren't trained in things such as algebra etc. It may take some tweaking/fighting to make sure she recieves the appropriate resources. Twice exceptional children (gifted and disabled) are a special challenge.

Anonymous said...

Thank you for sharing your experience. I am the mother of a 5 yr old ( was a 25 weeker) that has Special Needs. We are currently going thru the IEP and multi factor eval to figure out where she could receive services for kindergarten. I could relate to 100 % of what you wrote.

Your Ellie is ADORABLE!!!!!!!!!

Thank you for writing on this subject.

Anonymous said...

THANK YOU for this post. The issue of so-called "inclusive education" is a very touchy issue in the Deaf community as well. Many Deaf adults (and parents of Deaf, deaf, and hard of hearing children) feel that, very often, a mainstreamed setting is NOT the most appropriate setting for many Deaf (or deaf or hard of hearing) children because many of them need a visual learning environment in which everyone SIGNS to give them FULL communication access (not just intermittent access when an interpreter is available. And most interpreters in mainstream schools are very badly underpaid, so only the least experienced interpreters interpret in schools). (If curious to learn more from the Deaf perspective, check out http://www.deafread.com ).

I have been Deaf from birth. I was mainstreamed for most of my life (deaf day-school for preschool and part of the day in kindergarten, then mainstreamed part of the day kindergarten and full time from 1st grade up through my first year of university). Academically, I think it was the best choice from among the very limited options that were available: my parents' choices were basically, mainstream me locally, or send me to Deaf/deaf schools that were not really prepared to give me the full challenge that I needed in the classroom (I was so-called "gifted"). But I lost out a great deal on the social side of things, and at the age of 37 I think I still experience the repercussions of that. (The interpreters were only available for academic discourse--never for the social give and take of the cafeteria or the play ground. So I was extremely isolated.) And, even though I say it was the best choice for me academically, I think even in the academic arena it wasn't really as ideal as it could be. My ability to particulate fully in class discussions, for example, was limited by the interpreter lag time (an interpreter is always, inevitably, going to be a few seconds behind. This makes it difficult to know when it's appropriate to jump in with your own comments--and so, I usually didn't at all).

So -- I can attest first hand that integration CAN have it's advantages, CAN be right for SOME disabled children (maybe many, maybe most). But there are also important downsides to "inclusion." Because sometimes the so-called "least restrictive" environment is actually the MOST restrictive environment for a child with disabilities. So I'm with the other people here who say that the real answer to "inclusion" versus "special ed" is "it depends."

Andrea
http://reunifygally.wordpress.com
(The only reason why I'm "anonymous" here is because I'm too lazy to figure out how to register so I can sign under an actual screen name.)

Kathryn said...

Andrea, thanks for sharing your story. It's sad that they didn't think it important for you to have an interpreter during lunch, recess and other social times - rediculous in fact. It must have been lonely. I saw Ellie being very isolated in her class room in the integrated school. It just swirled around her. In the New School she is truly a part of it all - socially and academically. Right down to getting her pig tails pulled (gently by admiring boys and having to share her toys).

But you are right, it depends.

Thanks for the link too.

Great to have your voice here!
Kathryn

Kathryn said...

Andrea,

Oh - I saw that you left your comment three times and can only assume that you were puzzled that it did not post right away. Sorry about that. I have had a troll visit my site and since then have had comment moderation on. So all the comments go to me for approval first and then I can publish them. It's not ideal, but better that than having the troll litter profanity all over Ryn Tales.!

Kathryn