Things Parents of Kids with Special Needs Wish You Knew

“A kind gesture can reach a wound that only compassion can heal.”
- Steve Maraboli

Over the years, we have been lucky to meet so many families of children with special needs and become a part of their daily life. We have been there to experience great triumphs as well as to help overcome trials through ABA services and parent consultation. Through our interactions, we have heard parents discuss everything from behavior management and communication to sleep difficulties, food selectivity, potty training, and more. But there is something else that comes up frequently and consistently. Most parents focus on helping their child reach their potential at home and in school, but we often hear that the assumptions and perceptions of other people can be a source of great anxiety. At In S.T.E.P.P.S., we think it is important to increase public knowledge and raise awareness so that children with special needs and their families feel supported by their family, friends, neighbors, and community. Of course, every child and their abilities are different, but here are some things that we have heard directly from parents about what they wish YOU knew.

1. My child is not “misbehaving” because they are a “brat” or I am a “bad parent”

2. I notice when you stare or give dirty looks (and it doesn't feel good).

3. Meltdowns and tantrums are hard on me AND my child.

4. My child is unique and amazing! Get to know him/her.

5. I worry about how my child is treated when I am not around.

6. There are reasons for my child’s behavior(s).

7. Pity is not productive.

8. An understanding smile is a simple thing to do and it can make my day!

9. I try to focus on the positive by myself, but positive words from others means a lot. 

10. I need empathy and kind words, not judgment, from those around me.

11. I go to great lengths to keep my child safe at home and when we are out in public.  

12. Just because my child can’t talk doesn't mean they don’t hear what you are saying.

13. I have to parent differently than parents with typical kids.

14. If you want to know something about my child, just ask.

15. My child may learn differently than others, but he/she is not “broken.”

16. I want to talk about my kids and I want to hear about yours.

17. I am always anticipating what my child needs or wants.

18. My child may have a sensory processing issue that makes it hard for him/her to be still or quiet.

19. Simple things like going to the store can be a challenge (and sometimes I dread it).

20. If you have met one child with autism, you have met ONE child with autism. Every child is different, don’t compare.

21. Rude and insensitive comments don’t help and make me feel guilt/embarrassment that I shouldn't have to feel.

22. Try not to take things, like language, for granted. Some of us can only hope to hear our child say “mom/dad” or “I love you.”

23. I can’t always just “find a sitter.”

24. Don’t assume my child can’t do something just because he/she has special needs.

25. I live in fear that I will turn my back for one second and my child will wander off.

26. Interacting with my child may take a lot of work and patience, but please don’t let that stop you from trying. It is SO worth it! 

27. I don’t have all the answers, but ... 

28. I don’t need unsolicited advice.

29. My child needs the same things all kids need: love, acceptance, laughter, play, and fun!

30. I am “on” 24/7 and need to be ready for anything.

31. I am exhausted.

32. My child may not understand things like sarcasm or emotions.

33. It is important for my child to have friends and interact with other kids.

34. I need friends, too! Keep inviting me out for coffee or dinner or come over and just hang out with me.

35. I constantly worry about my child’s future and what will happen if something happens to me.

36. I am an advocate for my child in every setting of his/her life. This means I am live and breathing paperwork, calls, appointments, emails, therapies, and meetings.

37. Your children learn from modeling. Show them how to be tolerant, accepting, and compassionate by doing it yourself.

38. You can help my child reach his/her potential just by helping raise awareness.

39. My child has so many great qualities and abilities!

So, friends, what else would you add to this list?

-Lindsey Lewis