35 Things Special Needs Parents Want Their Family and Friends to Know


 

One thing we hear often from parents in the Mighty community is that their families are just that — families, like anyone else’s. But there are certain parts of their experiences that can look different and may not be fully understood, even by the people closest to them. Furthermore, many of us may not know exactly what these parents need from us, their supporters.

We asked the parents of children with special needs in our community to share what they wanted their friends and families to know about their lives. Hopefully this spreads empathy and understanding. Here are some of their responses.

1. “Even when it looks like we have it all under control, we could still use help, even if it just means a hug of support when overwhelmed.”

2. “It’s not always easy to go out. I wish people would visit more if they want to see us, instead of insisting I bring my son into a loud, difficult environment that he can’t cope with.”

3. “We might not be someone else’s version of ‘happy,’ but we are our own version of happy. We have figured out what works for us, and we only operate one day at a time.”

4. “Keep reaching out to me. Keep calling and visiting. It’s hard for me to reach out and call friends and family. Every day is so full. Don’t forget that I still need you.”

5. “Although we’re coping on the surface, underneath I am terrified of the responsibility.”

6. “We don’t do spontaneous.”

7. “Don’t feel sorry for us.”

8. “Define ‘normal.’ What’s normal in my house is not what’s normal in your house or any other house, special needs or not. Normal is relative to who is defining it. Please be sensitive to this. Everyone has a journey and they all take different roads, and they are all beautiful, each in its own way. I love my normal.”

9. “The way we do things is because we’ve tried everything else. Please do not judge our decisions.”

10. “The worrying never stops, even when he is doing well.”

11. “No, it’s not all rainbows and unicorns. However, I wouldn’t change it for the whole world.”

12. “The hardest thing to do is keep focus on the miracles and progress when deep down there is so much fear. Will he have friends who accept him? Who will take over his daily care if something happens to me? How can we pay for more therapies? How will we deal with ignorant people’s hurtful comments? The fear is endless and haunting. And I want to enjoy his beauty, curiosity and humor, too. The fear and joy are constantly competing for my heart and head space. I don’t need my friends to ‘fix’ anything, just to listen and care about us.”

13. “My children are a blessing, not a burden!”

14. “Stop judging my child for what he says or does. He can’t help it, whether you believe it or not.”

15. “Ask! Ask us how we are coping. Ask how he is doing. Ask about his disorder. Ask how you can help. Ask how the other children are coping. Just ask!”

16. “Everyone’s always looking for an answer a way to ‘fix’ him. He’s not broken. There is no answer. He writes his own book. Be thankful you get to partake in his story and enjoy every minute along the way.”

17. “We don’t want your pity. We want your willingness to understand and accept.”

18. “Please educate your own children about bullying, and encourage them to be a friend to someone who may be different.”

19. “I am his safe place. Listen when I say we can’t go or have to leave.”

20. “Everything is an accomplishment. We don’t sweat the small things. We take joy and pride in every day together. Every moment together is as precious as life itself.”

21. “Life is chaotic, loud, very, very messy, and exhausting, but we wouldn’t change it. Our kiddos are still our kiddos. We don’t need quick-fix advice. We need lots of coffee and some laughs thrown in.”

22. “Don’t be quick to judge who and what you see. You never know what the true story is, and you can’t know what your reaction might have been if you were in my shoes.”

23. “Our children are more like other kids than they aren’t. Treat them no differently than other children you love. Be patient, give hugs, and include them in all that we do. They are our future.” 

24. “We are harder on ourselves than anyone else ever could be, so be kind with advice! Just because it doesn’t seem like part of your plan for us, doesn’t mean we don’t think there is potential for it to work!”

25. “I may look like a super mom, but really I am just a mom. I really just want to give credit due where it should be. That’s my son, who gives me the inspiration to keep moving forward and never give up. I’m not saying it’s easy or that it isn’t full of emotions and worrying. It’s a roller coaster ride, but it has the most beautiful scenery!”

26. “It can be lonely. Please, please teach your children to respect and love, not fear or hate people who are different. Nothing hurts more than watching my child be left out or ignored or left behind.”

27. “Yes, my schedule is full of doctors’ appointments, and physical therapy, surgeries and more. But I can make time to see you, if only you would ask or invite us over. It is hard to ask for help. We are so used to doing it on our own, but we need help sometimes, even if it’s just an ear to vent to.” 

28. “Experience our home and our life. See how amazing our kids are in their comfort zones, rather than an unfamiliar environment that may incite unpleasant behaviors from overstimulation. You will hopefully leave with a better understanding.”

29. “We are not bad or lazy parents. We have learned with the help of our son what works best for all of us and are very grateful for that!”

30. “I don’t have super powers and I am not a saint. People say, ‘I couldn’t do what you do,’ but I’m sure you could. We all just do what we have to do. We take care of our families and life, just like everyone else.” 

31. “Don’t feel sorry for us or embarrassed by our children. We love them for who they are and are just as proud! Reach out to comfort us, but understand we wouldn’t change our children for anything else in the world!”

32. We might be late, we might not get there at all. But please know we tried our best. ‘Simple’ things sometimes are not that simple.”

33. “It may seem like we have our sh*t together, but we don’t. We learn about new challenges daily. We still hurt daily from unacceptance. We feel isolated on a daily basis. There is so much more going on behind the scenes you know nothing about.”

34. “You may be the only person we can tell our ‘real’ truth or feelings to. Don’t try to fix it or feel bad for us. Just support us and love us.”

35. “Even if we look different, we are a happy family, exactly like you.”

Image via Thinkstock.

 35 Things Special Needs Parents Want Their Family and Friends to Know

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