Part of the reason I started to blog again is that I want to raise as much awareness for special needs children that I can. As a proud Down syndrome and Autism mom, I want to educate the public in as many ways as possible. Today I felt I would focus on some pet peeves that special needs parents have, especially things that people have said to us in the past.
One of my biggest pet peeves being Joey’s mom is someone saying, “People with Down syndrome are always so happy.” Believe me when I say, this is totally not the case. Spend two minutes with Joey when he’s at the doctors, when his favorite movie is over and no one is around to change the channel, or when he’s in sensory overload. My little dude can have one heck of a little temper! And same goes for his feelings getting hurt; nothing breaks my heart more than seeing someone deliberately ignoring him when he is trying to get their attention. The fact is that people with Down syndrome experience a full range of emotions such as sadness, anger and happiness, just like everyone else.
When I was pregnant with Joey and when he was a newborn, I had some people say, “I’m sorry,” when all I truly wanted to hear was, “Congratulations!” or “He’s beautiful.” Don’t get me wrong, I had people congratulate us, but occasionally we would get negativity.
I even had a family member’s (now ex) spouse say, “Oh you knew (meaning while I was pregnant), but you didn’t do anything about it?” What did he want me to do, terminate my pregnancy?! This is probably the worst thing that I’ve ever had said to me as Joey’s mother. It hurt and still hurts to this day. Thankfully that person is no longer in our family.
I decided to reach out to fellow special needs parents on Facebook to get some more ideas of things to try not to say to us or find different, politer ways.
- “God only gives special people special children” or “God only gives you what you can handle.” This was from multiple moms, including myself.
- “Your son is mentally retarded.” No, my son has Down syndrome… another one from me.
- “Oh, he doesn’t look like he has Down syndrome.” From myself and Patti.
- “Are they sure?” or “How do they know?” when discussing various diagnoses our children have. Kimberly and Jennifer both said this one!
- People have said to Lindsey, in regards to her son being on the spectrum, “Well he looks ‘normal’ so why can’t he act ‘normal’? Seriously, what is normal? Because he is my normal and I wouldn’t change him for anyone!”
- Kim says, “How about, ‘He only looks like he has a little bit of Down syndrome.'” This one drives me nuts as well, I must add…
- “He’ll grow out of it, right?” Jennifer said when discussing autism.
- Pat says, “People say, ‘She looks perfectly normal. What’s wrong with her?’ Family blames me and the doctors for not doing things right. People say, ‘Everything happens for a reason,’ and that one is the worst. People ask detailed medical questions that are none of their business and give simple answers to my daughter’s problems. I have lost family and friends because people just don’t understand what it is like to live in and out of the hospital.”
- “Oh, let him be a kid! A little dirt won’t hurt him.” Katie’s son has Cystic Fibrosis, and a little dirt COULD hurt him. They really have to watch germs, or they get trapped in the mucus in his lungs. They must avoid soil, populated play areas, etc.
- “I would like people to understand the different types of autism, the obvious and the not so obvious. My son has Asperger’s. He is often called weird or different by peers.”
- “Oh, all kids do that.” Maralee said. “For our kids with the invisible disabilities, it’s frustrating when people say it when they don’t realize the unique struggles we’re facing. All kids may enjoy roughhousing, but not all kids will beat their head on the wall if they aren’t getting the sensory input they need. It’s really invalidating, although I can see how they’re trying to be encouraging.”
- Lauren says, “One of the most annoying things, to me, is when I tell someone about my daughter, and they automatically make a sad/pity face and say, ‘I’m so sorry.’ Like she’s some unfortunate thing that happened to me. I want people to understand that a feeding tube is just another way of eating, a wheelchair is just another way to get around, and signing/AAC (Augmentative and Alternative Communication) devices are just another form of communication. Though there are challenges certainly, none of these things make her pitiful.”
- Alethea said, “Unsolicited advice. If I want advice I will ask, but if I am telling you about something I’m struggling with, I’m looking for someone to converse with, not advice.”
- Kathy says, “I get frustrated when people think all I need to do is teach my autistic child the proper behaviors and he will be ‘fine.’ No, this is the way he is, this is the way he learns and experiences the world. He will never fit a mold.”
- Bailey suggests, “Person-first language. See the person before you see the disability.” This one is HUGE in our community! Don’t say, “A Down syndrome child” or “Downs kid”; this puts the disability before the child. Say, “A child who has Down syndrome.”
- Pam states, “When they ask ’Does she have Down Syndrome?’ Or when they ask if she has it, then make the ‘oh, I’m sorry face’. I’m not! She is the love of my life and wouldn’t change her for the world!”
- From my dear cousin Corey: “I don’t have an autistic child, but three with ADHD, one with severe OCD and anxiety, and I have a friend with an autistic child. I hate when people say we are babying them (doing something they need) or catering to them/letting them get away with …. I also HATE when people say it’s just bad parenting.”
- Megan says, “I have 2 boys, both with differing ends of the autism spectrum. I am constantly asked to do things that my kiddos just can’t do. I have 3 kids under 5. A is 5, L is 4 and R is almost 3. I am alone 75% of the time, so things like zoos, theme parks, beaches… can’t do them. It isn’t safe. I wish other moms understood how lonely it can be.”
And remember, for special needs parents the word “retarded” hurts. Please don’t call our children that word or use it in a joke. Use their actual diagnosis. Even if you’re using it in a joking way, this word stabs us straight in the heart and tears us apart.
Obviously I don’t expect you to remember each thing I posted, but if you have a loved one or an acquaintance who has a child with special needs, please take this post as not being harsh but into your heart. We know a lot of times, people don’t mean what they say to be disheartening or mean, but it does hurt. As special needs parents, we can be super protective of our children. We will be spending the rest of our lives advocating for them and fighting for what’s best for our children and others like them. We just want our children to get the same love and respect as “typical” children.