Before I became a special needs parent, I didn’t really even know what “special needs” meant. I thought I had a basic understanding, yet it didn’t occur to me that saying certain things (even with good intentions) would be frustrating and even hurtful to a special needs parent. I’ve learned now that people have a strong desire to comment on what’s going on with my son. While they may mean well, the things that I’ve heard have been offensive, frustrating, and even heartbreaking at times.
The term “special needs” has many different definitions and is often misunderstood. A child with special needs can range from mild developmental delays to severe impairment. The child may have an illness or high risk health. The term can also refer to children with psychiatric problems. A designation of “special needs” is important and helpful for families to be granted access to early intervention programs and various services that can help their children. Unfortunately, this umbrella term is often misunderstood, resulting in another level of frustration for parents.
As a special needs parent, here’s what I want you to know:
There is nothing “wrong” with my child
Don’t ask me “what’s wrong” with my child and don’t tell me “he looks normal”. What does “normal” mean anyway? Who gets to decide who is normal and who isn’t? There is nothing wrong with my son. He may have developmental and medical difficulties that other children don’t have, but that doesn’t mean there is anything wrong with him. He is exactly who he is supposed to be. I choose to focus on what he can do, instead of what he can’t. At the same time, just because you may not see what his challenges are, doesn’t mean they aren’t there. Questioning his diagnoses and therapies isn’t helpful, and pretending they aren’t there sets him up to fail as well.
He may always need help, and that’s okay
You don’t “grow out of” congenital illnesses, syndromes, autism, and cognitive impairments. Rather, children learn how to function and do many of the same things that others do, but in a way that is best suited for their needs. Special needs parents advocate for research and programs that will advance progress towards helping their children. Advocating for my child is one of the hardest things I’ve ever done.
As a special needs parent, you have to be relentless. You have to challenge others over and over again. Most importantly, you cannot give up, because your child is the one who will suffer if you do. Many prayers, tears, and sleepless nights go into all that we do to help our children, and in the end many of these are lifelong battles.
Whether or not I have more children is my business
Frankly, this is no one’s business, regardless of whether or not you have a special needs child. Asking if a person is having more children and being surprised that they want to because “what if you have another child with problems?” is beyond rude and offensive. The difficulties that my son faces could be from the medical problems he has endured. Or, this is always who he was supposed to be and that’s okay. Either way, it’s none of your business.
“My sister’s cousin’s co-worker’s son is special needs, so I totally understand”
No, you don’t. Just like all children, my son is unique in his own way. We live in a world where we’re constantly comparing ourselves and our children to each other. Consequently, we often hold them to a standard of perfection that is unachievable. You don’t know what it’s like to have a child with special needs unless you have a child with special needs. Even then, each child’s needs and experiences are different. Because of this, you can’t ever know what it’s like or truly understand. What you can do is ask what it’s like, in a kind and respectful way of course. You can also show empathy and compassion, especially during those low moments that every parent has.
I’m not a “Supermom”
I can’t believe the knowledge I possess in regards to Congenital Heart Defects, Ischemic Strokes, and Early Intervention. Two years ago, those things were foreign to me, but now I live in a world where those are part of my everyday life. I spend four days a week shuffling through speech therapy, occupational therapy, structured playgroups, physical therapy, and home teaching. I drive all over the Bay Area taking my son to countless doctor’s appointments. Some days are beyond hard. Other days I’m able to celebrate something my son has achieved, and I see that all of this work is paying off.
As parents we love our kids and we give them what they need, special needs or not. I take care of my son and ensure that he has what he needs to be successful in life. Despite what some believe, this doesn’t make me a supermom. It just makes me a mom.