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As a parent to two special needs kids, there are many things I want others to know. While there aren’t enough hours in the day for me to go over it all, this post comes pretty close.
I polled hundreds of special needs parents and realized we all want you to know the same things. Here are 37 things we wish people knew about our lives and our kids.
Special Needs Parents Want You to Know…
1. It’s not that you could never do what we do. You could and you would because you would have no other choice and because you love your child. We are the same. We would do anything for our children.
2. We would rather that you not give us sympathy or pity.
3. We are not being over protective, we are concerned about our child’s health and well-being.
4. You can’t make our children do something (talk, eat, etc.) just because you want them to. Children with special needs aren’t just being stubborn, they are often unable to do these things.
5. It’s mentally, physically, and emotionally exhausting being a parent of a special needs child.
6. We are not superheroes.
I am not a superhero and God did not give me this child because He thought I was the only one who could handle it. He gave me this child because she is perfect just the way she is and she makes me a better person just by being her mom.” – Allison
7. It’s not as “easy” as it looks.
It really IS NOT nearly as easy as I make it look. There are a ton of bad days mixed in with the good. While I keep a smile on my face all the time, some days I still cry my self to sleep while no one is looking. It is more exhausting than it appears to be.” – Ashley
8. We are happy with and love our children just the way they are.
9. We are more educated on our children and their challenges and complexities than most doctors.
10. We constantly worry about our children and their future. It never ends.
11. We are doing the best we can. One step at a time, one day at a time.
12. Just because are kids may look normal from the outside doesn’t mean they don’t have special needs or medical complexities.
13. Children with feeding tubes need them. It’s not because we as parents are lazy.
14. It’s hard for us to ask for help because the people we ask do not know how to deal with our kids, their challenges, and complexities.
15. Every child is special.
Everyone has something special about them like my child does. Even if someone appears to be different, we are all special in our own way.” – Eunice
16. We don’t know how we do it either.
17. The loneliness is one of the hardest parts.
I feel so lonely even when surrounded by people. It’s hard for me to relate to any of our friends with children or even make time to be social for that matter.” – Jenn
18. We would rather that you ask us questions about our children than just stare.
19. We wish we could socialize and see family more often, but it can be very hard if not impossible at times.
No one wishes we could socialize and see you more often more than we do! You think you don’t see us often enough… We don’t see anyone often enough. We do our best, but our life isn’t anything like yours. Our choices aren’t like yours. And that’s all ok! We wouldn’t trade our life without our daughter for anything in the world. So please accept that we go our and get together with others as often as physically possible.” – Rachel
20. What our children have isn’t contagious.
21. We need friends too.
We need friends just like the rest of the mom (or dad) world…more so in fact. Nobody understands better than parents who have been there too.” – Stacy
22. We need help even when it appears like we have everything together all the time.
23. It’s hard for us to see other children doing what is considered normal, when our children can’t.
24. Some of us maybe have to bury our child one day and it haunts us daily.
25. We don’t work at home to take the “easy” way out. We work from home so we can care for our kids.
Just because I work from home to care for my child does not mean I took the easy way out. It was hard to leave the job I loved for the child I love more.” – Ellie
26. We have more to do then you could ever imagine. Please be patient with us.
27. We would prefer that people not say anything at all than make cliche comments and give irrelevant advice.
28. Our children don’t just need more discipline, they are trying to cope with the overwhelming chaos around them.
29. We are scared. More than you will ever know.
30. We need date nights and time to work on our marriage too.
We would love people to take the time to understand it’s not too tough to learn how to babysit our children. We have never had a babysitter to go out on date nights. Out of all the parents, I think special needs parents need more time than most couples to work on the ‘us’ part of the relationship.” – Darnell
31. It’s hard for us to sympathize with other parent’s complaints about their normal and healthy children.
“I really do have a hard time listening to healthy baby worries (for example, “My 15-month-old still isn’t walking!”), so pardon my absence from mommy groups. That’s one of the hardest things for me.” – Kallie
32. Even though our children may have extra needs and special therapies, they need and want interaction and love just like any other child wants and needs.
33. Going out with our children takes a lot of time and planning. Some of our children require special attention and special medical devices and supplies. It can feel like you’re carrying your entire home around with you.
34. We don’t sleep. Caffeine is a way of life.
35. We worry that people will stop being friends with us because our lives are so complicated.
36. We are afraid of what will happen to our children if we leave this world and who will take care of them.
37. Our children may learn to cope better with the challenges, but they do not outgrow them.
Did I miss any? What would YOU add to this list?