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A rebuttal of sorts

24 Feb

An article from the Huffington Post popped up in my Facebook feed, via a special needs parents organization.  The title – “Isolating a Child with Disabilities Can Do Life-Long Damage“.  On initial glance, I thought “Yes, good point.”  So I clicked on the link and read it (feel free to do the same thing.)

By the time I finished reading the post, I found myself disagreeing with the writer.  Because while I agree with the initial statement and the point of the post – which is getting our special needs kids out there into society – I realized that the writer came at it from a very one-sided position.

Her post was all about letting your different kid be normal, do normal things, not be held back by disabilities, and very pro-inclusion, whether that’s the school or social setting. Which again, as a theory, I do agree with it.  I mean, we’re notorious for not letting Maura’s disabilities hold us back from life.  She is dragged along everywhere just as much as our older three so-called normal kids.

My problems started when the writer – who I actually wondered at one point if she had any exposure to special needs kids – basically stated that parents avoided normal settings for their special kiddo because it was the more comfortable option…

…and I quote – “In an effort to make life as comfortable as possible, some parents will seek out special schools, groups, or activities catered to their children, so that they will only have to deal with children who share their disability.”

I call bullshit on this.

That’s right, I said bullshit.

The writer does have a disability herself, and alluded that her child also has a disability, which really makes me wonder how she can make a statement like that.  Maybe she’s really out of touch.  Maybe I’m the one who’s out of touch.  But I know for damn sure I didn’t choose a special school for Maura out of comfort.  I chose it  because they were the most able to deal with her wide range of disabilities.  I chose it because it was the best choice for my daughter, not for any narrow-minded feelings I might have.

Granted, I’ve experienced both a mainstream situation and a special school.  In the U.S., where we lived, there were no special schools for my daughter.  I only had one choice – mainstream at the local public school that wasn’t prepared to take on a child with moderate disabilities and had to do a classroom/bathroom modification, hire a teacher and aide, and out staff through medical training.  I worried that as she grew, she would get more and more distanced from where her NT (neuro-typical) peers were at, that she would become even more isolated than she already was.  Yet, there were no other options for her.  Mainstreamed with modifications was our only option.  An “option” that  doesn’t work for every child with a disability. (And yes, I’m putting quotes around “option” because by definition, an option is being able to choose, which requires more than one thing to choose from.)

When we got to Ireland, we found out that we got to make a choice between mainstreaming or a special school. We made what we considered the right choice for our daughter and have not regretted it.  While the special school does do academics, it isn’t the main focus, like at her old school.  No, the main focus is to get these kids as independent as possible.  They have cooking classes, go on outings to the store to learn how to use money, go to the library to learn how to check out books and videos, learn how to ride a bus, put on their clothes, how to use the toilet.  Things my daughter needs to learn.  Things they didn’t have time to cover at her mainstream school because they had to meet academic standards.

Here’s the ironic thing – while the writer of the article scoffs special schools, she then writes – “…children with disabilities need to be exposed to the same life experiences any other kid has. They need to be exposed to a variety of people and situations.”

Maura has been able to gain more life experiences through her special school than being mainstreamed because of the focus on life skills.  In a regular school, she wasn’t getting the same experience as the other kids because her special needs still had to be met.  She was pulled out of the regular classroom about two and a half hours out of the day at least for therapies and specialized education and diaper changes and medicine dosing.  Being in the same school building did not equate to the same school experience. At her special school, she has the same experiences as her peers, and actually more experiences than her sister does (Miriam is quite jealous of the cooking classes and swimming every Monday.)

But really, I think the writer of the article is missing a point – just like  none of my “normal” kids are alike and have the same needs, kids with disabilities don’t have the same needs.

It’s one thing to have a child with mild Asperger’s – which qualifies you for an IEP and extra help at school – versus having mental and physical disabilities plus medical needs, or in IEP terms – multiple impairments.  A child with mild Asperger’s can be held to the same standards as his NT peers, can be expected to get to class on time, should be able to choose his experiences just like his classmates.  I know this because my one son has mild Asperger’s.  It causes some quirks and bumps in the road, but  we don’t treat him as a person with a disability- we treat him as our very capable son with the amazing brain.  That said, when he needed extra help, we made sure he got it.  It wasn’t coddling, it wasn’t being over-protective, it was doing what was right for him in that situation.  Which gave him the skills he needed to be able to do those things independently later on.

On the flip-side, we have Maura.  Who is amazing in her own way.  But she needs lots of help.  She is not a typical kid.  She will never have typical experiences, because she doesn’t have typical reactions.  For instance, she loves movies.  When they make her happy, she squeals loudly with joy.  When there’s a sad scene, she will be overly-empathetic and burst into loud tears.

While we include her in everything possible, the plain fact is, she is different.  And her differences do factor into what experiences she can manage.  As she ages, she falls behind more and more on the developmental charts, which means putting her in with NT kids isn’t the best option for her.  Sometimes, she needs that “special group” the writer of the article scoffs at – because that’s the experience she will get the most out of, and have the most fun with.  Because a specialized group is the right choice for her.  Not the coddling one.

Really though, there are so many articles and advice columns about what to do with a child with special needs.  And the pressure that if you don’t do the right thing, you’ve failed as a parent and have failed your child.  I wonder how many parents have read this article and are now doubting their choices?  I wonder why, even as parents of kids with special needs, we feel the need to say “You should do it THIS way!”

My advice to parents – do what think is right for your child.  Trust your gut, and let them surprise you.  I don’t know your child well enough to make emphatic statements about what should and shouldn’t be done with them.  Choose the school setting that will most benefit your child and meet the most needs. If your special kidlet is great at sports, then put them on that soccer team.  If they like music, expose them to more of it.  At the playground, let them try things…even if it means you hovering around them in mid-heart attack (okay, I’ll admit, that one is tough for me.  Anxiety, a tall play structure, and a child with balance issues is an interesting combination. The compromise is I go out of view and have someone else play spotter.)

At the same time, don’t set your child up to fail – whether that means having too much help or not enough help.  Sink or swim doesn’t work with every child.  Sometimes, it backfires and the child drowns in their failure, doing more harm to their self-worth than if they’d had help floating.

Really, we all need to realize that the World of Disabilities is a large one, with many variables.  Tough love doesn’t apply to many cases.  Nor does one-sided advice.  Do what’s best for your child – that’s all any parent can do.

 

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29 Responses to “A rebuttal of sorts”

  1. Cindyckbryl February 24, 2012 at 5:50 am #

    Completely agree, now I need to go read the article!

  2. Maggie Bullard February 24, 2012 at 6:40 am #

    Beautifully written and I couldn’t agree more. Thank you for sharing your point of view!

  3. Denise February 24, 2012 at 7:12 am #

    Thank you for saying exactly how we feel. Middle school for our daughter was Hell. She was in some special needs and some mainstream classes (like science and social studies). That was a big mistake and it was so incredibly overwhelming for the whole family. A child that can’t get past 2nd grade math should not be expected to memorize the periodic table of elements. Now she is in high school and is in an occupational program that focuses on life skills and job skills. She still gets mainstreamed for things like PE and electives. In her program she will actually graduate with a job. I can’t tell you how relieved we are that she has a program that is the best fit for her. It has been such a huge boost to her self worth that she actually went and applied for a volunteer job at the library all by herself. We were so exasperated when she was in middle school that we considered homeschool but she is such social kid it would have broken her heart. She can still have lunch with her friends at school. Parents know their children best and need to trust their gut about their education. When children are forced into a program that does not work for them they do fall further and further behind.

  4. Diane Siemers February 24, 2012 at 7:24 am #

    Although I don’t have a special needs child, I have been in the school environment for many years and have a daughter that teachers special needs preschool. I agree completely with your statements.

  5. rochelle rawlings February 24, 2012 at 7:38 am #

    I do not even need to read the article. i have met parents like the author many times. The worst are so called advocates (who do not parent a child with special needs) who want to limit the choices of all people with special needs. In Michigan they propose to close group homes, sheltered workshops, day programs and any other service that they determine to be non-inclusive. My son wants to spend his day with his friends who are his special need peers.

  6. noangeilli February 24, 2012 at 7:41 am #

    As always, insightful and well-written! As a special education teacher, I couldn’t agree with you more. Mainstreaming and inclusion are not always the most appropriate choices for students with disabilities. In fact, for some students, those things can be more cloistering, causing the student to be segregated even further from the “normal” kids.

  7. Kathleen February 24, 2012 at 8:19 am #

    Very well said. Thank you! You know that trip to Holland that a parent of a child with special needs gets to take is fraught with tough decisions. I thought that if I did enough research I would KNOW exactly what to do. I believe in inclusion, but pushing it on my son was wrong. When he was in junior high, his resource teacher and I would face-off every few days always arguing about how to make inclusion happen for him. When he reached high school, we tried something different (we also met the most amazing special education teacher). He went into a class similar to your daughter’s, where life skills and outings take up most of his day. It was the right thing to do. He has blossomed and turned into a happy adult confident in what he can do.

  8. JO February 24, 2012 at 8:32 am #

    I think parents of all children- typical or not- strive to do what is best for their child. But you are right what is right for one may not be right for another.
    Why can’t we as a special needs community band together and simply respect one another’s choices while offering empathy for the paralells in our situations? Set aside the judgement and simply relate to one another?
    That’s why special needs parents and children gravitate toward one another. It’s not convenience, it’s simply a sense of relating and having things in common. Isn’t that the normal process for facilitating friendships?
    My daughter is in a mainstream “inclusive” public school (US- no choice unless I can shell out $50,000/year for a private school which isn’t even mandated to meet her needs the way public school is) And yet in the public school we have to fight tooth and nail for everything. A 1:1 aide for safety (seizures + motor delays= accidents frequently), PT for said motor delays, SLP for language delays, behavior therapy. In an inclusive setting she is more than ever alienated as different. In a setting full of kids with needs wouldn’t she feel more included?

  9. Jessica Storm Williams February 24, 2012 at 8:55 am #

    I love your blog. It’s very insightful. When I first decided to major in SpEd, I only wanted to work with autistic children. Your blog really opened my eyes to the other types of children there are that need a teacher that is trained to be able to cope with life skills beyond just reading or math. As such, I’ve been studying and researching and no longer want to limit myself to only autism. Maura, through your stories on your blog, has really inspired me to do more. Thank you for sharing your life with us. And thank you for sharing your Maura tales with us.

    • phoebz4 February 24, 2012 at 9:52 am #

      Wow, thank you. I love hearing people who are enthusiastically pursuing degrees in special ed! Good luck with your studies.

  10. Mary Ann February 24, 2012 at 9:03 am #

    Great, Phoebe…or do you prefer ‘Great Phoebe’?! 😉
    As one of the privileged ‘service providers’ for your wonderful daughter in that stateside public school you refer to, I applaud your decision…am glad you have more options in Ireland, and think your writing comes (as always) out of solid reflection from your ‘Experience, strength and hope.’ I send my love to each of your great kids and their wonderful mom and dad as well! What fun to view their beautiful growth in your photographs…and great writing.

    • phoebz4 February 24, 2012 at 9:49 am #

      Your ears should be burning – I was telling the story of Sean and the nubby little pencil to a friend today 🙂 And I shall always, gratefully, be in your debt for all the good you’ve done my children.

  11. Linda McDermitt February 24, 2012 at 9:54 am #

    Thank you for saying what needs to be said. Sarah is much in a similar situation as Maura. Fortunately, the public school system here is large enough to have a contained classroom setting for her and her peers, as well as opportunities to “mainstream” in social settings like the cafeteria, assemblies, etc, but not so large that she gets lost. That being said, because it’s a public school, it must follow certain academic requirements which means more time is spent by her instructors modifying math, science, and language test requirements and focusing on those important life skills you mention. There is a balance. The main thing is that Sarah is very happy and safe. Also, we have realized that inclusion in a general ed classroom would put undue stress on everyone and force “normal” students to sacrifice their much needed classroom experience to someone who would require a significant amount of the instructor’s time and energy. I think some parents are just not prepared to accept the difference in their child, and my heart hurts for them and for the child who may be in over his/her head in an inclusion setting. Well, thanks again!

  12. A E February 24, 2012 at 10:21 am #

    I am not sure where in the States you were, but in Florida we do have the option of special education and special schools for those with disabilities and all the schools are outfitted to ADA standards. (?)

    • phoebz4 February 24, 2012 at 10:40 am #

      We were in SE Michigan, near Ann Arbor (home of U of M.) In that county, there was one special school for severely disabled students, several contained classrooms for moderate to severely disabled children, and two autism specific classrooms, which they did not advertise, nor would allow parents to view (at least in a friend’s case.) Basically, in that county, if your child had mild or moderate disabilities, you were mainstreamed. Only those with severe mental and physical disabilities went to a special school. Granted, my daughter was still considered in special education. But her school had to make preparations for taking on children with moderate disabilities, to meet their basic needs (like a handicapped bathroom with a diaper changing area.)

      So technically, our area had options. They just weren’t options for most of us. It’s kind of like the FAPE – fair appropriate public education. It sounds good, but the interpretation of it isn’t always what’s best for the child.

      • Amber February 24, 2012 at 3:26 pm #

        I live really close to where you lived in Michigan…Ann Arbor is about an hour and a half from here? Maybe two. (sorry I never retain distances, just the time it takes to get there from here!, lol) We live down by the border to Indiana. Anyway! The special needs school we have here sounds very much like the one you described in Ann Arbor. My Ty is in a severely multiply impaired classroom. I kinda feel like impostor mom sometimes when I read about the struggles moms have with IEP’s and school systems and such. I’ve had pretty smooth sailing as far as Ty goes. I hope it’s not for a lack of knowledge of what should be different! I think the author should aspire to walk around in many more peoples shoes before making such general-and fairly insulting-statements. I have never met a group less likely to choose “comfortable” before what’s best for their child, as special needs parents-and considering it requires twice the work, on half the sleep, as our “regular” kids require-that’s pretty freaking amazing.

  13. Maria February 24, 2012 at 11:03 am #

    Great post. My son has some special needs and was in a mainstream class in K and grade 1. After that it was really apparent that he could not learn in a regular classroom. Right now he is in a “resource room” program at a regular school: this means he is in a small class of special needs kids most of the time, and has some time in a mainstream class (though his academic work is mainly done in the resource room). It has been an amazing change for him: in a classroom with only about 8 students and more support, he has learned SO much. We don’t shield him from anything: he plays with “mainstream” friends after school for example, but for many kids the optimum learning environment is definitely not a “normal” classroom (I think many “normal” kids have a hard time in there too!). Every kid is different: special needs or not, and like you state so well : parents should make choices based on the needs of their child and not try to impose those solutions on others.

  14. Sharon Hoover Weidemann February 24, 2012 at 11:43 am #

    Said well my friend:) My child has FAS (& no it wasn’t me who abused the alchohol), severe MR, nonverbal & intestinal failure. While she operates typically at 21-24 months, she’s extremely perceptive. She knows that she can’t do what her sisters are doing for fun & while she LOVES to be with them, she gets incredibly frustrated that she doesn’t know how to do what they do… When Sara was in a Life Skills Class instead of Multiple Disabilities Class, she was a behavior nightmare: it was TOO HARD! Since she’s gotten sick, she’s schooled at home with a learning support teacher for 1 hour 4 days a week & she’s the happiest I’ve ever seen her regarding school. We need to let her bloom where she’s planted… it’s giving her the best quality of life.

  15. Wendy Carroll February 24, 2012 at 1:24 pm #

    When my son was still a toddler, I was determined to fight for him to be mainstreamed when he began school. I thought that was my job as his mother. But a friend who also had a special needs son wisely advised me that mainstreaming was not always the right choice. She told me the students in regular class were NOT his peers. His social circle would always be others with special needs and to force him into a childhood of struggling to cope with “normal” kids was stressful and unnecessary. I tried nonetheless but two months into mainstreaming, I realized she was correct and placed him in Special Ed. It was definately the right choice for him.

  16. Candes February 24, 2012 at 2:00 pm #

    Very well said, Pheobe!

  17. Karen February 24, 2012 at 3:18 pm #

    This is an excellent response, and you were right to call BS!!! I read the Huffington Post article. Although the author did not state it directly, it seemed to me that she has a problem with all of the modifications for kids with “invisible” disabilities such as autism. I think that she has a fundamental misunderstanding there. However, she does make a really good point about parents who have absolutely no long-term plan for their children. Also, she is correct in pointing out that many kids do not have much real-world experience. I’ve often been told by teachers and other parents how wonderful it is that I actually take my kids out to different situations every single day during their school breaks…I know kids in special ed who only know school, home and the therapist’s office.

    Thanks for another great blog essay!

  18. dianne sullivan (i'm half irish!!!) morton February 24, 2012 at 11:01 pm #

    VERY well said/written. I love following your blog.

  19. Troy Wittren February 25, 2012 at 1:46 am #

    My wife and I each have cerebral palsy. We both attended Holladay Center, a school in Portland for the disabled. I had speech therapy, was taught how to dress and feed myself, and was taught many other life skills. We were mainstreamed in the fifth grade. My wife had a tough time with her mainstream experience. The school did not want here there, but they were forced to take her. I had better luck with my mainstreaming experience, though I always had trouble fitting in socially.

    Jodie and I value the life skills we gained at Holladay Center. We have argued with people who oppose such schools, and we are surprised when they don’t value the opinion of us who went through the system.

    People want a one size fits all solutions to everything. They don’t know what’s best for Maura; you do.

    I love your blog!

  20. Jessica February 25, 2012 at 6:18 am #

    A very good rebuttal, and indeed (about the article) bullshit. I came into a fierce neurological disorder as an adult. I fought all of it. I fought the special arrangements that made me more functional. I had once been “normal”. It was my goal to be so again. It never happened. When I get into a stressful situation my mind goes into chaotic mode, causing a sense of confusion that I have yet to explain.
    It took a while before I heard what one of the doctors saying that I could do teh very best out of the circumstances I was now living under or fight any and all of the same and just feel terrible most of the time. Overwhelmed.
    In a weird turn of events; before having to leave work due to the disabilities before me, I had been working with financial compensation and more, to families with special needs children. there was, most of the time, a period of inclusion in regular school but as the children get older, so does the marked differences in function-level. Inclusion might feel good for the parents but the child might just not understand the focus and/or emphasis in regular school. The needs of the child, ever so variable child to child should be guiding.
    But going one way, and only one way, with a child with special needs (in this context) inclusion in regular school, might say more about the parents than the needs of the child. Excluding the times when inclusion is the only thing offered.

  21. safetyforstuah February 25, 2012 at 10:52 am #

    Thank you! And yes yes yes. This all seems so true to me.

  22. lexiemom February 26, 2012 at 11:44 pm #

    Beautifully stated!

  23. Karen February 27, 2012 at 8:43 pm #

    Phoebe, I’d like you to meet a young man that I provide services for (or better yet, spend much quality time with). If you haven’t already read about him on his grandma’s blog, (logansgrandma.blogspot.com) stop over for a minute to my blog, bagladysjournal@blogspot.com, and read my post for Feb. 25th.
    He’s a remarkable young man who’s mother has done exactly what you have done, and that is fight for his rights and what’s best for him.
    He, too, is in a class with his peers, in NW Ohio, who all accept Logan just as he is and enjoy interacting with him throughout the school day.

  24. Karen February 28, 2012 at 9:01 am #

    I’m sorry…that last post should have read…bagladysjournal.blogspot.com…sorry.

  25. Christine February 28, 2012 at 12:27 pm #

    luv what u said!

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