How Learning My Daughter Had Special Needs Changed Me Forever

I’m forever changed, and I’m not so sure that’s a bad thing.

Just the other day, I sat and listened to someone tell me that when they worked in a special education class it “wasn’t that bad.” That the kids were only pulled out for Language Arts and mainstreamed for the other classes. She went on to tell me that when she worked in the more “severe” classrooms where the children are “all like,” [mimics with her body what she must perceive someone with special needs to look and sound like] she “didn’t understand it.” I think I was just stunned by what was being said to me. Despite what I think my face must’ve looked like, she continued and stated she didn’t understand the reasoning behind those children with “severe” intellectual disabilities having teachers read books and sing songs to them. She didn’t see the point.

As my skin began to crawl and my blood boil, I wanted to say something terrible, like, “So what should we do with those children?” But I didn’t bait her anymore. I decided to educate her. I decided to tell her that some people with significant physical disabilities function cognitively at the same level as their peers and genuinely enjoy hearing songs, stories and learning from their teachers — and although they can’t always show it, learning is occurring. I also wanted to say, “And what if those children were believed to be incapable of understanding? How do we know for sure? What is the harm in enriching those children’s lives with music and literature?” I wanted to then divulge my own story, to tell her how I was told my own daughter was not capable of understanding, speaking or learning like “a normal child.” Needless to say, I didn’t. I wanted to, but I didn’t.

These types of interactions make me sad at first. Naturally, how could I not be? Some people still feel this way about children with special needs. Some people still don’t understand how far we’ve come in our beliefs of what children can do and what they are capable of. I often think to myself, would these people make such comments if they lived with a childhood disability themselves? If they had a child with disabilities? If they lived a “normal” life and then their mental capabilities changed? I don’t believe they would.

My feelings towards the negative views of special needs and the education of children living with these needs have changed drastically. Instead of becoming enraged with these people, I choose to educate them. I choose to share stories of children I know and my own. I choose to ground those people with comments like, “That must be so trying on their parents and families.” Not a burden in any way of course, but all of the extra challenges that occur daily for a special needs family can take a toll on all.

You see, once you’ve sat in a room with a neurosurgeon who has told you your child isn’t aware she’s living and is incapable of development in her current state… that kind of horrific meeting can change a person, and change them forever. Was I always sensitive towards children and people with special needs? Actually, I believe I was. But my own experience and those of the families and friends I’ve grown to know in the special needs community have forever changed me. I see everything differently. That child at the store everyone is staring at. I smile at the mother and offer a nod of understanding. That child at the restaurant who randomly shouts or screams but looks “too old to be doing that.” I smile at the mother and give her a nod of understanding. That child who smacks my child at the park because she got too close to him or her? I smile at the mother, the one who is currently looking mortified and contemplating packing up and leaving the park altogether and give her a nod of understanding. Something may be going on. Yes, you sometimes have naughty little kiddos who act up, but there can often be unseen things going on that we can’t know. In those instances, I ask that you extend kindness to those people and try not to judge. Try to choose kindness. Choose hope. Don’t merely try to appease these people, but welcome them. Accept them as part of your community.

If we can get to a place where we do this, where we don’t label children, where our kids go to school together — in a classroom in which you have all children with varying intellectual and physical needs — then I think we will have progressed as a society. Stop telling parents to institutionalize their children. Stop flagging kids with special needs and segregating them. Support the schools and teachers with the resources and training they need.

Stop stigmatizing special needs. Just stop. Take a step back and see this. Those are children. They are all children who were birthed by mothers who love them and want nothing more than their lives to be as easy as possible.

Let us hope. Let us change.

Follow this journey on My Purple Pack.

The Mighty is asking the following: Describe a moment you were met with extreme negativity or adversity related to your disability and/or disease (or a loved one’s) and why you were proud of your response — or how you wish you could’ve responded. If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.