Mom: The one thing parents of kids with special needs really need

We parents of children with intellectual and developmental disabilities often practice a lonely advocacy, navigating school systems and other institutions with very little local support. Our isolation makes networking via social media and special needs organizations extremely important.

Unfortunately, far too many parents receive judgment instead of support.

Much of the conflict in our community comes from the collision of two goals. As advocates for our children, we are an extension of a global disability community that is fighting for a more inclusive society. For some parents, that means insisting upon complete inclusion at any cost. However, for other parents, what’s possible or best for their family may be in conflict with the goals of the larger disability community.

For instance, in many schools, the investment in inclusion is highly correlated with the level of parental involvement. Parents with the resources (time, income, etc.) to push for their child’s inclusion often minimize the challenges of other families. No parent should be judged because they are working two jobs and can’t manage the details of their child’s education, yet many in our community do just that.

As a result, we alienate people instead of supporting them.

The special needs parent community is not just split along resource lines. We are also split according to the relative abilities of our children. Some parents opt for special education classrooms simply because that’s the best available situation for their child. This decision is treated as treasonous in some circles.

While research does show that the majority of children with special needs do better academically and socially in general education classrooms, the data does not show that inclusion is necessarily best for every individual child. So while parents can agree that full inclusion should always be an option, many do not want to lose the ability to choose other environments.

When my son was in kindergarten, he could concentrate in a busy classroom for about 20 minutes. The effort exhausted him, and he detached from both academic and social activities. Because of this, he now spends a good part of his day in a small, structured special ed classroom. We value the inclusion time that he gets, but we also see merit in limiting it.

No amount of research trumps what I see with my own eyes—he is happier, friendlier and learns more when he spends part of his day in a smaller classroom. I hope access to a more controlled learning environment is not always mutually exclusive to inclusion, but as long as that constraint exists (and it does in our troubled school district), I make the compromise that gives my son the best chance to succeed.

My logic is rational, but still I need thick skin when facing other parents. I’m not alone. One local mom told me about pressure to forego the extended school year and Special Olympics because they are not inclusive activities. She has even witnessed judgment about the age at which children potty train.

Why are we beating each other up? We ought to channel the energy we spend alienating one another into fighting for political change that makes inclusion a realistic option for the largest number of students. Specifically, a child’s inclusion should not be dependent on their parents’ ability to fight the school for proper services.

Moreover, our community has lost the talents of many insightful parents, largely because we won’t speak to their reality. Don’t drown out the voice of a parent who testifies that inclusion does not work for their child—we need to consider those viewpoints as we work to define and expand inclusion. We need to push for new solutions and understand that in the interim, a parent may decide that a special education classroom is the best place for their child.

But before we problem-solve and campaign, we must realize that we cannot ask society as a whole to expand itself to include people of different abilities when we have so little tolerance of the differences between ourselves.

We need to be willing to expand our own ways of thinking to include children and families who don’t fit inside our current best practice models.

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