Parenting is something like a hiking trail. There are so many turns, bumps, and hills. Sometimes, one of those bumps is a child having special needs. These can be invisible like ADHD, Autism, or even selective mutism. They can also include physical disabilities or other medical issues, like a genetic disorder, Spina Bifida, or Down’s Syndrome. So, how is, parenting a child with special needs?
Every parent processes differently, some in more positive ways than others. It is so hard to hear that your child isn’t normal because most of us just want our kids to have a childhood without major issues. We don’t want our child to be the one that everyone wonders about in a group or class. Some parents go into denial or overdrive – meaning, becoming obsessed with their child’s condition, not in a healthy way. Many of us are somewhere in the middle.
I write this as a mother with two kids that have special needs. Both are loved very much exactly for who they are. I believe in meeting your child where they are; not necessarily where you want them to be.
Even if they can’t speak, a child knows how you really feel about their needs.
I learned this while working with kids with autism and other developmental disabilities at Peace Hospital. I was a mental health associate there for almost five years, and it was the best job I’ve ever had. I loved working with even the “hardest” kids. I learned a lot about myself as a person and a mom while working there.
My younger son, J, is 14. He was diagnosed with ADHD (combined) and autism when he was five years old in 2011. I knew that something was going on, but couldn’t quite figure it out, even with the resources I had. It took a two day evaluation, but we finally got answers.
It may sound funny, but I was relieved. I finally knew how to help him.
He’s now a freshman in high school and is doing well. He’s medicated, which was the hardest decision ever. Nobody wants to medicate a 5 year old. We went through some social skills therapy while in elementary school. He’s one of the best things that’s ever happened to me.
My daughter, L, is 13. Her struggles were a bit harder to see. I regret taking so long to get her help, but I honestly didn’t know what was going on. I considered ADHD and autism among other disorders. I had her screened for both, but nothing pointed to autism and she did meet some of the ADHD criteria. She continued to have issues with self-care and other skills. I began to get frustrated.
Her pediatrician referred her to the Kids Center for Pediatric Therapies for dietician assistance as her weight crept up. She’s been there for over a year and receives Occupational Therapy for what turns out to be motor dyspraxia. She has no issues with her speech; that was taken care of through First Steps as a baby. She is doing well in OT. I am not sure how much longer she will need services, but having a diagnosis really helps us out. Again, I meet her where she is.
This is all being said as a way to show others what to say and not to say to a parent of kids with special needs. Sometimes, people say hurtful and mean things- that’s the fastest way to anger me.
Here are some things that you can say to a parent raising a child with special needs:
- “How can I help?” This is really effective for a parent that may be a single parent, has multiple kids and/or a medically complicated diagnosis. In general, asking what you can do to help is a way of showing support, which we can definitely use.
- “How can I learn more?” Early on with J, I had to sit all of the grandparents down and explain his diagnoses. My in-laws really didn’t get it at first, even when I offered resources. It took a couple of years, but now they’re great with him. My mother is endlessly supportive of my kids. She’s always said that if ADHD had been widely diagnosed when she was a kid, she would have gotten a diagnosis as a kid. She gets it. This also shows that you do want to help and support the family.
- If a child has adaptive equipment, ask how you can assist if needed. Some equipment is hard to maneuver if you aren’t shown how by someone who knows what they are doing.
- Ask to include the child as much as possible. It’s hard enough being a kid, but when you’re left out of activities and events because of something you can’t control, it hurts. It also hurts the parents.
- “How is your child doing?” I get this a lot with J and it reminds me of the progress that he has made. It shows not only that you care, but that you’re invested in being helpful, even if in a small way.
Here are some things that you shouldn’t say to a parent raising a child with special needs:
- ”Try this food, medication, etc…:” This is annoying and rude. Most parents of special needs kids would try almost anything to make their child’s condition go away, but that’s not how it works. Some foods may help, depending on the condition, but not always. Medications can be life-saving in some cases but in others, it helps with behaviors that are out of their control.
- ”I’m sorry.” I am not sorry that my kids have the needs they do. I would do anything to take away those struggles, but in most ways, they are just like everyone else. I just happen to have a very concrete thinker who struggles with empathy, for example. I have a kid that can barely do jumping jacks without help. It’s just the way things turned out.
- ”My cousin/niece/neighbor’s kid, etc has that and this helped…” Every kid is different and so are their therapies. Chances are, the parents/caregivers are on their own path to figuring out what does and doesn’t work. If you really know the kid involved, this may be okay depending on the situation. Otherwise, just don’t do it.
- ”They will grow out of it.” I get annoyed at this one. I don’t think J will ever lose his sense of adventure, but I hope his lack of sensing danger improves. He’s at the age I worry a lot about him hurting himself doing something dumb. We had a chat about not doing things he sees in YouTube vidoes or TikTok and he’s good. I do wonder how this will go once he learns to drive. He, however, will not grow out of either condition that he has, but can learn to adapt or ask for accommodations as he gets older. As for dyspraxia, I know that there are adults that have this condition, including a couple of friends. I hear it does get easier, but never really “goes away”.
- ”Are you sure this isn’t your fault?” Believe it or not, people actually say this. I was asked this by my husband’s aunt when L was a baby and I have not spoken to her since. We didn’t get along anyway, but this did it for me. My working full time and chasing two little boys in no way contributed to her delays or dyspraxia. This is probably one of the worst things to say to a special needs parent. If you have a child with special needs, there’s already some self-blame going on. If you think this about a child’s condition, it may be better to keep this one to yourself.
Parenting a child with special needs can be difficult to understand for others. Sometimes people don’t know what to say, so they don’t say anything at all. This can be as or more hurtful than the phrases listed about. Families with special needs children need support and inclusion. Show kindness to them and you may find or enhance a new friendship.
Read more about resources for parents with children with special needs.
