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Challenge: Finding Your Voice as a Parent

When Inclusion is NOT the Right Choice

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At the beginning of the school year a fellow special needs mama friend posted something on Facebook that really hit me. She wrote of her daughters’ self-contained life skills class, ‘’It’s totally ok and sometimes even wonderful when your kids are in a nurturing life skills class. Inclusion can’t be the one size fits all solution for educating all of our special kids.’

For the first time in my own 16-year special needs parenting journey I felt confident enough to give a resounding ‘hell yeah’ to this sentiment.

Those of you more self-assured in your own opinions on this topic may wonder why it took me so long to publicly support such a thing. Those of you still hell bent on shaming parents who feel this way may want to skip the rest of this article!

Parents witness all sorts of degrees of choice-shaming among their peers. From co-sleeping, breast or bottle feeding to organic foods, we often find ourselves afraid to say what we believe to be the right thing for our situation and our kids. And even when we may believe that breast milk is best, for example, sometimes the universe doesn’t grant us the means to provide for that. Ladies, we need to stop this crap now, mmkay? I don’t need to tell anyone how hard parenting is already, and with the added pressure we put upon each other by looking down our noses, it can be unbearable and very lonely.

That said, let us also be secure enough in our beliefs and ourselves that we CAN discuss what we feel is best with each other in a respectful enough way to open the space for good dialogue, camaraderie and maybe even a little education. There is a fine line and balance in everything.

But back to the topic at hand…

For years I tried to believe all of the people who told me I should fight for as much inclusion time as my non-verbal child could tolerate. For years my child had great difficulties staying regulated in that setting. (You think loud proponents of The Ferber Method had you feeling like shit when you couldn’t get your own baby to sleep and caved into rocking them when they cried? Girl, that is nothing compared to the quietly obvious judgment a self-righteous special needs parent can serve up!) This culminated in the form of some really tough behaviors that were clearly his way of communicating to the adults around him, ‘Help! This is too much stimulation for me and my body can’t handle it!’ But I and the others took way too long to listen to these messages and so I continued to agree to an inclusive elective or lunch in every IEP (individualized education plan) meeting. The inclusion hours dwindled, but I was not yet strong enough to request they be stopped completely. I suppose much of this is because I held out hope that he would magically be able to fit into those sessions with his typical peers and be accepted as a member of their flocks. While there were some wonderful children who were drawn to him and greeted him outside of school, his increasing episodes of extreme agitation when integrated in the middle school left many of those kids thinking he was odd and distracting. It broke my heart to recall my own insecurities during the middle school years and to think about how the stares and chuckles of those kids must have affected my sweet Miles.

By the time we moved yet again into a new school district it was very apparent that he needed to be in an environment tailored for children like him. He didn’t need the added sounds that came with the hustle and bustle of a typical high school. Loud bells signifying the end of each period, children hurrying past each other in the hallways to get to their next class, and lunchrooms filled with the loud whirring of teenage voices...these are the things that cause more harm than good for my boy and other kids like him.

Not everyone has access to schools specifically geared toward the most severely disabled children in our communities, so they often instead have classrooms tailored to various degrees of challenges. In my last district, Miles’ classroom was called ‘Life Skills.’ For children who could tolerate more inclusive time with their peers it was called ‘Resource.’ Whatever the names of these rooms, parents, I urge you to advocate from your heart and your brain in knowing what is best for YOUR child! If you know that your child would flounder in a P.E. class with his typical peers, do not be afraid to say so! If you know that your child needs to have a more calming space than even the small life skills class allows, ask for a separate quiet room so that they can have a better shot at succeeding each day.

I am extremely fortunate that in my community there exists a school for kids like my son who have severe communication issues, behavioral challenges and/or complex medical needs. I feel like the universe made us move a million times to get here, armed with the knowledge and awareness that this is the setting he needs to be in. I am also grateful that with age and maturity I have been able to stand more firmly in my knowing of what will serve my son best.

In the United States our children are guaranteed FAPE (free and appropriate public education) under IDEA (Individuals with Disabilities Education Act). While this law dictates that you, the parent, are simply one member of an entire team who makes decisions on what is best for your child, (this includes administrators, teachers, therapists and psychologists), your voice is the most important. Please do not ever forget this. Our public schools are no doubt struggling under the weight of dwindling funds, and special needs children are extremely expensive to educate. But it is your legal right to this appropriate education and if you know in your heart that what your child needs differs from what the rest of the team is offering, I strongly urge you to keep advocating for the proper placement! It is tiring, stressful work, without a doubt, but when you finally get your child into the right setting, you can finally breathe a bit and focus more on the other issues that need your attention.

As my son’s health issues become more complex and challenging, not having to hire a special needs advocate or stress over the annual meeting to discuss his services is one of the greatest blessings I could ask for. I hope that you find the right setting for your child at some point, too. And I hope that you find your confidence in knowing that you, Mom or Dad, absolutely know what is best for your child.

And as always, we are in this together. Let’s lift one another up knowing the majority of us are just doing the best we can!

For more information on your child’s rights and how to advocate for them, please visit: https://www.wrightslaw.com/

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