When Inclusion isn’t Right

Inclusion.

It is the new “thing” for kids with Down syndrome and other special needs.  Instead of having them stuck in a special education room, separate from their typical peers, as they have been since I was a child, they are included in the typical classroom.  The idea is that having everyone together will promote better understanding of differences for the typical peers, while giving the kids with special needs a sense of belonging and challenging them to be the best they can be.

If you have a child with special needs, and you belong to any kind of parent group (in real life or online), you know all about inclusion.  It is all some groups talk about.  It is the right thing to do!  It is the only way!  You must push for inclusion or you are doing your child a huge disservice!

At least that’s how it seemed to me, when the time came to enroll Ellie in kindergarten.  The thing was, I wasn’t sure about all of that.  Ellie has some pretty significant delays, and I really didn’t feel that being in a typical classroom all day was right for her.  So we opted to have her in the Life Skills (the new name for special ed) class for the majority of the day, with only a small fraction of her time spent in the typical class across the hall.

It worked for her for the most part.  With her speech delays and the fact that she couldn’t even draw a proper circle yet, it made sense for her to be in a smaller class where she could get more one on one attention.  She was being taught the same things as the kids in the typical class, but on a slower schedule. The typical class spent one day on each letter.  Ellie’s class spent two to three days on each letter.  If Ellie got tired (as she often does) she could curl up on one of the little mats and take a short nap, then wake up ready to learn some more.  The kids in her typical class loved her, and whenever she missed school would ask when she was coming in.  We’ve been working on having her in the typical more and more as the school year goes along.  Because inclusion is the way to go, right?

The problem was that Ellie was missing more and more days of school.  The plethora of germs that abound in a kindergarten classroom were doing a number on her health.  While other kids (like Laurel) can get a cold and be over it in a couple days, when Ellie gets sick she stays sick for a week or more.  Then, around Thanksgiving, she got really sick.  And didn’t get better.  After three rounds of antibiotics, several chest x-rays, nebulizer treatments, and missing a month of school we finally saw a pulmonologist who diagnosed Ellie with asthma. With the help of yet another round of antibiotics to clear up the pneumonia she had developed along with a new regime of asthma meds, she finally got healthy.

Then she went to school for a week.

Luckily we’ve been snowed in this entire week, because she’s sick again.  At least it won’t count against her attendance, since the school has been closed.  We are just hoping that she’s well enough to go to school on Monday.  I haven’t looked at the numbers lately, but I’m fairly sure that she’s been out of school almost as much as she’s been in.

During her two months of sickness, Ellie’s pediatrician said something to me that really stuck.

“I don’t think that school is good for Ellie’s health.”

I laughed it off at the time, because really, what was the alternative?

But it’s been in there, in the back of my brain while we’ve worked to get Ellie better, and it’s made me really reevaluate what Ellie needs vs what the Down syndrome community as a whole has been pushing for.  At what point does the push for socialization and interaction with her peers get outweighed by her need to stay healthy?  How much education is she really getting, when she is missing days, weeks, even a whole month of school?  What, really, are the alternatives?

Luckily, we live in Pennsylvania where there are a lot of educational options, from public and private schools to charter schools, homeschooling, and cyber schools.  Laurel attends a public charter school for the arts, but a brick and mortar school of any kind would cause Ellie the same problems as her current situation.  That leaves home and cyber school.  I know myself too well to pretend that I have the discipline to homeschool my child.  I need to be accountable to someone or I will let her slack off.  That leaves cyber school, which will give us the flexibility we need (we’ll actually be able to get Ellie all of the therapy she’s suppose to have, since we’ll be able to do it during the day), the ability for her to learn even when she’s home sick, and keeps me accountable because we have to login every day.

I am meeting with PA Cyber’s IEP team in a couple weeks to talk about pulling Ellie from her current school and enrolling her in cyber school.  I am doing the least inclusive thing I possibly could.  And you know what?  That’s ok.  Because sometimes inclusion isn’t the right answer.  Sometimes your child’s immune system can’t handle being in a class of 20 other germ infested five year olds.  Sometimes interaction with that many kids is too overwhelming for all of their senses.  Sometimes school is just too much for your child’s body, mind, and spirit.

Sometimes you have to listen to your gut, not the mommy group.

I think that inclusion is a great thing, and that it does a lot of kids a world of good.  But it just isn’t right for us right now.  Maybe when she’s older and stronger she’ll be able to handle being in a brick and mortar school.  For now, we’ll keep her home and let her immune system have a break from the constant onslaught of germs and stress that she’s been dealing with since September.  We’ll have more control over her schedule and her education, and that is what’s best for Ellie.

 

 

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One thought on “When Inclusion isn’t Right

  1. Slightly different situation, but I’m familiar with the pressure for inclusion. My daughter just wasn’t being treated correctly or even being educated correctly in a public school. She goes to a private/public school now and is thriving and becoming more independent. I agree that we have to do what is right for the individual child, and sometimes it takes time to figure that out. -All the best health and solutions to you and Ellie. (Mom of child w/Angelman Syndrome)

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