Swing the Pendulum my way a little will ya?

I’ve been doing a lot of reading and research on how Larkin will transition into Kindergarten.  She has another year after this in Early Childhood and it could be that if she benefits from one more year there she will stay put.

What I am struggling with is that the pendulum has gone from self contained classrooms for those with special needs, all the way to the other side of inclusion that has taken away my right to keep Larkin in a self contained classroom if that is what is best for her.  I grow weary of reading blogs and listening to other parents that don’t want any type of seclusion for children with special needs.  I am happy that there are children that function at a level that allows them to enter a general education classroom but mine doesn’t.  I am happy that there are children who function socially at a level that allows them to interact with peers and learn but mine doesn’t.  However as it stands in Unit 4 – Larkin will not have a functional IEP when she transitions.  So I am trying to change that …. cause I need one more thing to do.

As I left school last week I was reading Larkin’s physical therapy notes.  I realized as I read and walked …. we have been working on the same goals for 3 years.  3 years.  Three years.  2+1 years.  1+2 years.  Tres years.  The difference is that we are now seeing her make these goals.  We are seeing a difference in our girl and it has taken a great deal of patience, love, tears, anger, frustration, and at times – wanting to throw in the towel, to work through over time but guess what – she is making her goals.  Just takes her a little longer.  Slow and steady wins the race as my friend RaeAnn says.

Larkin will learn best with fewer children in the room, more one-to-one contact, and life skills training.  Intensive therapy for her school day along with play.  Learning to feed herself, potty training, perhaps learning 3-4 signs, and one of my biggest dreams is that she will hold a crayon and draw with it – one day.

For those who need an explanation here are the differences in terms:

Mainstreaming is a child w/ IEP going into a regular ed. class with the expectation that they will handle the coursework like any other student with some modifications if necessary.

Inclusion is a child w/ IEP who is going into the regular ed. class with the expectation that being in there is beneficial socially. They are being “included” in the activities of their same age peers, but they are not expected to be performing like them academically. Therefore, you may have a child in an inclusion situation where they may cover similar topics, but the work is set at their level.

Larkin does not need to be paired with an aide that will walk her around the building with 3 other students as they go through their IEP schedule.  For example Larkin would be paired with an aide who would also have 2 more children to work with.  Those 2 other children can be of any age or functional level.  If child A has gym then Larkin and child B would go to gym and sit and watch while child A has gym time.  Larkin has gym time then child A,B would follow her to gym and sit and watch and so on and so forth.  Does that sound to anyone like a functional quality day of school?  Doesn’t to me and it simply won’t happen on my watch.

I just read a blog that said Special (segregated) programs are not necessary, nor desirable. They are, in fact, extremely harmful. These programs separate students from the mainstream and  perpetuate the negative stereotypical belief that people with disabilities do not belong in the mainstream. These special college programs–like other special programs–represent an artificial environment that insults, demeans, and marginalizes.”

Can you hear me screaming as I read this?  And this is from a blog from a mother with a child with special needs.  Isn’t that nice that she pigeonholed my child because of her opinion based upon her own child’s functional level.

For MY child she needs segregated programs during parts of her day.  For MY child she needs an environment that said blogger feels is “artificial” because it is what WORKS for MY child.  And I happen to know there are many children that would benefit from certain parts of their day being programmed this way.

Larkin will have interaction with typical role models and her peer group.  Art, music, gym are all areas where children can come together and accept, play, grow.  But she doesn’t need to be strapped into a chair and forced to work on skills that will not benefit her because “someone” “somewhere” decided that all kids need inclusion for their entire day.

I met with the Unit 4 special education director last week and I was pleased to learn that Unit 4 has finally hired an inclusion coordinator.  Albeit a part time position and one for the entire district – at least we are making progress.  Ideally every school would have an inclusion coordinator but we seem to keep spending money on attorneys in the district for a consent decree for one class of individuals – which has caused a failure for another group because of budget issues.

I can’t fight it all today but I plan to fight for Larkin’s right to an education that works for her and her needs.  Urbana district 116 runs a beautiful program called ASSIST which does meet the criteria for Larkin.  I keep asking WHY doesn’t Unit 4 have the same?  So I plan to work with the special education director to address the issue and make a change.

I can quote chapter and verse Wright’s Law and Larkin’s rights per the state and federal level.  What I want is what is best for Larkin and those like her with significant issues.  It was for this very reason that I started work on Larkin’s Place.  What is her place?  She doesn’t fit into any specific disability role and I will fight against those who try to force her into their version of it.  She is a little girl, a daughter, a sister, a granddaughter, a niece but above all else she is Larkin and her needs should be met right in the middle of the pendulum.

3 years is a breeze when you learn to work at the pace of your child vs the pigeon hole – slow and steady baby – and when our children are the focus – all of humanity benefits.

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8 Responses to Swing the Pendulum my way a little will ya?

  1. Ecki says:

    I wrote a very similar blog post when Kayla was accepted into The Center for Discovery. It’s a private special education school, specifically for the multiply disabled. It’s close to home (20 minutes, which is very close in these parts) and the school district is happily footing the bill.

    Around the same time I was reading a lot of blog post about inclusion being the only way to go — regardless of level of functioning.

    Yeah, it all sounds great, in an ideal world. But this world isn’t ideal.

    And if there’s a wonderful school that meets my kid’s needs, I really don’t care if it’s “segregation” or whatever. What works for KAYLA is what is important.

    She’s made so much progress in her new school in just a month, I know I made the right decision.

    So, I’m right there with you and Larkin. We have to do what’s right for OUR kids, not someone else’s ideal.

  2. Ann says:

    Amy, as you know, the “I” in IEP stands for INDIVIDUALIZED—which may or may not be inclusion, integrated, segregated, mainstreamed, whatever–but what is appropriate for the individual student. AS you know, Urbana DOES have a program that offers what you are thinking would be best for Larkin. And, Unit 4 DOES pay tuition to Unit 116 for some of their kids. It’s my understanding that Unit 4 is trying to replicate a program, possibly by next year. And, because of the individual special ed teacher in Champaign who is going to be involved, I am encouraged. However, I always worry when a district develops a program on paper — it’s the individuals that provide the services that are really determine whether a program is “appropriate.” Having an excellent teacher who “gets it,” as well administrative support at the building and district level and an atmosphere within the school that is supportive are all critical elements.

    As a provider, who works outside the schools, I am often helping parents understand options and educating parents on their role in determining the “least restrictive environment” for their kids. It is critical that people understand it’s not geography (or the location) of these programs that determine if they are appropriate but rather how they are run.

    It’s very unfortunate, but despite some caring educators, too many of the educational programs in our region just don’t get it. And, I can assure you, that the parents are the ONLY ones who can drive the necessary changes.

    It makes me crazy that families who already are dealing with an extremely full plate (OK, overflowing plates) are the ones who have to become educated on the law, educated on educational and therapeutic issues, and then become the “black sheep” of the herd when they start advocating for what is appropriate for their child. Keep up the fight—I have certainly seen that kids like Larkin (what does THAT mean???) end up with more appropriate programs when they have parents like you.

    I just wish education (regular and special) wasn’t always going from one extreme to another. We need to see balance and, gasp, common sense.
    Keep up the good fight, Amy!!!


  3. Laura says:

    I am one of those parents who supports individualized programs for children with special needs. Do they call those “segregated” now? What crap. I remember being at Jefferson in the 1970s, when it first became popular to “mainstream” children with special needs. I watched as they were picked on, mocked , humiliated, made the butt of jokes by 11, 12, 13-year-old numbskulls who didn’t know any better. I’m sorry – HOW IS THIS BETTER????? And don’t feed me that baloney that “regular” kids need to be “exposed” to kids with special needs. Really? At the special needs kids’ expense?

    Children who need individualized attention need to be in educational programs where they get it, where they are surrounded with other children in similar circumstances, where all of the teachers are trained for that.

    As for the necessary and potentially wonderful interactions between children developing on a “normal” timetable, and those with special needs, those can and should be structured in ways that encourage easy, gentle, gradual, SUPERVISED exposure to each other. Like the football team video you posted, Amy. Or programs where “regular” kids can volunteer to help out in the classroom. Or be “recess buddies.”

    We all saw what happened to that boy who sat in the wrong seat on the bus in Belleville last week. Can you imagine a disabled or special needs child trying to contend with that level of animosity, in addition to the other challenges they face?

    Children can be so cruel, as among the first things they identify are those things which make us “different.” It can be as simple as “I’m tall, but you are short.” And yet they inevitably try to use those differences as barbs, to see if they can draw blood. Often, it is just the TONE of an otherwise completely inoffensive statement that leaves another child in tears (“Mom, Susie told me that I have BROWN HAIR!!!!”)

    The differences with special needs children can be so striking and so obvious, that it renders them targets. And given the natural tendency of children to travel in “packs,” the target of one bossy or insecure child soon becomes the target of a mob of children equally eager to “fit in,” even if the activity they are “fitting in with” is mean and hurtful.

    I would no more want to subject my special needs child to that environment than I would push them off the roof.

  4. cathy says:

    great post as usual….I just wrote a post about challenges that is mostly about school struggles. I linked to this post as you summed up some of the points quite eloquently. I have no doubt that Larkin will be placed in her LRE as an individual- though how many bottles of wine you may consume once the wee ones are here could be questionable 🙂

  5. Marie Smith says:

    Hi Amy. Before I say anything else, I want to say that I absolutely agree with you that Larkin and all children need to attend school in the least restrictive environment that is most appropriate for her/him. Call me crazy but in a way because our children with special needs cause us to think about what their needs are, I think our children are fortunate. So many typically developing children could use a little extra attention or help at times but they are not going to get it because they have “no reason” to need it.
    I am a mother of a child with “special needs” and for my son, inclusion is the way to go. We had to fight to get him here but we were right and he is thriving.
    I don’t understand how Larkin will transition without the IEP in place. According to the law, the local education agency must have an IEP in place by Larkin’s third birthday when she will transition. My understanding is that your local education agency is no longer allowed to rely on the family service plan generated by early intervention services.

  6. Amy says:

    Larkin must transition with an IEP in place – the problem is it will not be a functional IEP based upon the current curriculum that Unit 4 forces on parents and children with special needs. There needs to be a change and that is why I am starting NOW vs in 2012. She will go to Unit 116 at Unit 4’s expense but WHY when they could develop the very same program.

  7. Lisa says:

    This is an important discussion and your perspective is very valuable. You are so right that parents can only speak to what they feel benefits their own child (or children). We all have to advocate for our kids (typical or not) when it comes to their health and education.

    I posted the YouTube video “Abilities” at one point and had very mixed comments. The video shows a group home in California that is it’s own sustainable community. Each person has a “job” and a role. All of the people who live there have diagnoses and are considered “disabled” (except staff). I saw a safe and loving community where each person was valued. Others saw a place that was segregated and was not what they would want for their child. I felt the same way you express here: what about those who are not able to live and function independently?

    Each situation is different. You pay such close attention to Larkin and are fully up on what is offered to her through the community, schools and government. You are a perfect advocate for her.

    I haven’t formed my own long-term opinion on this issue for Bridget (I usually evaluate and re-evaluate as I go along, anyway, and adjust where I need to). Right now, her preschool class is half typical peer models-half kids on IEPs. So while there is a typical preschool curriculum, there are three specially trained adults (plus therapists) in the classroom and there are assistive devices and adjustments or modifications as needed for the kids on IEPs. Almost all of her “therapy” is offered within her typical school day. She is not “pulled out” for therapy based on the results of the evals and assessments before school began. The school felt this was the best way to go at this point with her. More importantly, we agreed. (If we didn’t, we would certainly have been trying to find the best environment and balance for HER.) We are getting to “try out” inclusion in a safe and reasonable way. We feel it is important to offer Bridget typical experiences and typical education settings at this point. As far as we can tell, she is thriving in her preschool environment right now. Will it always be that way? Will she fall so significantly behind or be so significantly “different” that she is not thriving and happy? We don’t yet know. Like you, we’ll keep watching closely and making the best decisions we can as we move forward.

    Our girls are perfect, each in their own right.

  8. Sunny says:

    Hi Amy,
    As usual, I love reading your perspective. Having been a teacher in Unit 4, as well as Mahomet, I am always intrigued to hear parents with a voice such as yours discuss inclusion, etc. At the university level, future educators are taught that inclusion is not only the “way to go,” but it is “what the parents want.” And, when parents aren’t sure about what they know and don’t know (which is more common than you might think), many times it IS what they think they want. However, as Ann said, the I in IEP is for INDIVIDUALIZED (!), and each child’s needs should be taken into consideration when determining the least restrictive environment for him or her. For some children, full inclusion is best, and for others, it is not. But, it takes parents like you to help educate other parents, educators, administrators (even entire school districts if need be) to know that what works for one child doesn’t necessarily work for all. Thank you for your candid comments, and for your constant reminders to advocate for each of our children!

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