Sunday, September 27, 2015

Things NOT to Say to Special Needs Parents

Being a special needs parent to an autistic child, I often receive comments in regards to my child as well as intriguing questions from others. Most comments and questions have been sincere, but there's those few that drive me up the wall bonkers. The ones that make me want to roll my eyes and take deep breaths before responding. Here are some of my favorite ones (insert my eye roll). 

1. "She's so beautiful. She doesn't look Autistic."- Autism doesn't have "a look". Then again, all special needs and autistic individuals are some of the most beautiful humans on earth. I guess they're the closest things to Angels. 

2. "She'll be okay. She'll grow out of it."- Really? Are you sure about that? I didn't realize Autism is something that someone can "grow out of". It's a neurological disorder, which means it affects the brain and is LIFELONG. So for those of you who can't accept that someone you may care about/love won't "grow out of it", well I'm suggesting that you start. 

3. "My kid does (insert behavior) too."- Yes, there's going to be overlap in behaviors that special needs/ autistic individuals may share with their neurotypical peers, but chances are, those behaviors that you say your child does, he/she will be able to overcome them or they're not consistent/an everyday occurrence. Many special needs/autistics have to be taught to overcome some of their behaviors...easier said than done. 

4. "She's had all of this therapy. Is she at least talking/getting better?" - Progress is progress no matter how slow it may seem. To ask a question like this seems rather insulting to parents, especially to those of them whose child may not be progressing at the rate someone else "expects" them to progress. Parents and therapists as well as the child work diligently to master certain goals. Never undermine their progress. 

5. "She seems so great right now. She really doesn't appear to be autistic." -This one is probably my favorite and I know that people say this one because they're trying to make me feel better I suppose. However, just because someone has a brief interaction with a special needs child on a good day, doesn't mean this is 24/7, because it's not. Maybe they seem great right now because they're in their home or doing something they love. Or maybe they're doing so well because of all of the help and therapies they're receiving. Never pacify the work that the family/child has achieved. Saying the above line sometimes feels like receiving a slap in the face because it feels as if one believes my child never needed all of this help to begin with and again, another way of pacifying her autism. If my child is doing well, it's taken much time and patience to get to the place that she's currently at. It wasn't an easy journey to say the least. 

6. "Relax. Let her be a kid. You don't need to be on top of her all of the time."-Okay (insert my sarcastic laugh). Unless you're a parent or know what it's like to have a child who has zero fear of danger, shut your mouth. Do you honestly think I personally enjoy having to watch my child like a hawk whenever we're out anywhere public such as when we're at the park or on the beach? It's a little difficult to relax when my child is a known bolter and has zero fear of danger. This can also be said for many special needs parents. Does the term "hypervigilant" ring a bell? If not, go research that one. 

7. "If I had her for a day, I bet I can make her do xyz." -Please, I would LOVE the help. If you can get her to eat such and such and stop screaming because of sensory overload in a day, I promise that I'll pay for that dream vacation you always desired. Saying such lines to special needs parents isn't helpful. It's downright rude and again, undermines our children and our parenting. We're trying our best and the last thing we need is to hear how you're going to "cure" our child.

8. "I heard that autism comes from (insert latest findings). Did you take that/do that while you were pregnant?" - Even though Autism has been around for years, there's little that we know as to what truly causes Autism, but most research suggest genetics with some environmental variations. So to ask if there's something I did or another mother did while pregnant gives us the assumption that we caused our kids to be autistic or have special needs. Just let that one sit in for a minute. Re-read the question and imagine how rude that sounds and hurtful. There's NOTHING I did or my other special needs moms and dads did to cause their child to be autistic/have special needs. Autism is like one's hair color. Some will have it, others won't. Just like some are blonde and others are brunette. Genetics 101 baby. As complex as that. 

9. "I know so and so's child, cousin, neighbor and they do xyz. How come your child does/doesn't do that?" - Ladies and gentleman, autism is a spectrum, which means that just because my child exhibits certain characteristics and the other person you've encountered that's autistic as well does something else, doesn't mean they're both more or less autistic. Thus, Autism Spectrum is as broad as a beautiful rainbow. The variations/autistic characteristics will differ pending each individual. Just because he doesn't act like "rain man" or she isn't a "Temple Grandin" doesn't mean they're not autistic. Don't compare one Autistic person to another. Just don't compare period.

10. "Will she be okay? I mean what does her future look like? Will she be able to do xyz?". -I know when people ask me this question, it does come from a place of concern. However, just like anyone, I don't know what my child's future holds. All I can do is continue to support her growth no matter what and stay positive. That's all any special needs parents can do: continue to have faith that things will get better in time and that our children will be okay as long as they have the supports they need set in place.

My last one:

11. "How do you do it? I give you so much credit...I could never..." -Ummm thanks, but I have no choice. This is my life and if anyone else had dealt the same cards, they too would adapt. You do what you gotta do. I am no more better a parent than anyone else out there. I love my child and will continue to take care of her autistic or not. I made the decision to become a parent. I'm in this for the long haul. The same can be said about every single special needs parent I know. They are some of the strongest people out there. The only thing that's missing is their cape, but they'd say the same thing: they have no choice, but to parent their children, special needs or not, with love, respect and kindness. 

Lastly, instead of asking the above questions/making some of the comments above, my best advice is to say/ask this one to the special needs parent in your life:

"You definitely have your plate full. Is there anything that I can do to help? I'm here for you, even if it's just someone to listen. You're doing such an amazing job. (Insert child's name) is so lucky to have you as their parent. Again, what can I do to help."

Asking to help will go a long way. Special needs parents often feel isolated and alone so reaching out is extremely important and will carry its weight in gold. My response will always be: "sure, I need an unlimited supply of coffee and perhaps some babysitting once in a while? That would be nice. Thank you."