Monday, October 10, 2011

Things I wish someone had told me...

This weekend, we had some good friends over and had an absolutely wonderful time! Really, it was the first time in a long time that I wished everyone could have stayed longer, but alas we all have kids and one thing no one ever tells you when you become a parent is that your days of sleeping in late are OVER. Which in turn means, you nights of staying out late are also OVER. That is, unless you want to be a giant grouch the next day. Giant Grouch = Bad Mommy.

Anyway, I started thinking about why we had such a good time. First and foremost, were the people. Is there anything better than getting together with friends you’ve known for such a long time? Not really. It’s one of life’s great joys. Even on Monday, I’m still missing everyone.

The second reason is particular to those of us with special needs kids, and it’s why I decided to write this post. Every time we go somewhere with Grace, we’re always the ones who have to leave early. You see, when you have a child with moderate to severe disabilities, you can never truly relax at someone else’s house. You’re constantly on the look out for something that will hurt her, or something she will break. It’s exhausting. In the almost six years we’ve had Grace, we’ve only taken two family vacations because it’s so hard.

While everyone else is relaxing and having a good time, you’re up making sure your daughter doesn’t shove decorative stones into her mouth and choke. Or that her suspicious twitches aren’t a sign of an impending seizure, because like an idiot, you left her Diastat (medicine that helps stop an overly long/severe seizure) at home. And even if you did bring it, will everyone be horrified when you roll your seizing daughter onto her side, whip out the Diastat and gently push the GIANT tube into her rectum and push the plunger to stop her seizure? Will you be able to do it in time before she vomits all over the nice carpet? Probably not.

Why am I writing this? Because, just like no one ever told you that your days of sleeping in were gone once you became a parent, there are even more things no one tells you when you have a special needs child, and let me tell you, the learning curve is steep. I’m writing because I wish someone had done this for me, even if it was only to let me know that I wasn’t alone. Because waking up and finding that your child isn’t like everyone else’s is terrifying. I’m going to list some of the things I’ve learned. If you have a child with special needs, I hope it helps you—even if it’s just to let you know you’re not alone. If you do not have a special needs child, please read the list. You probably have a friend or family member in this situation, and maybe by understanding what they are struggling with, you can make their life a little easier.

So here goes. Feel free to add to the list in the comments section.

1. You will be terrified, and other parents won’t understand.

2. You will not think you’re strong enough—but you are.

3. You might lose some friends, but you will gain new ones.

4. You will mourn the life you thought you’d have—and that mourning might go on for a long time. Dreams for retirement with your spouse, college and marriage for your child, grandchildren, they all disappear.

5. These dreams will be replaced with new dreams. These new dreams are not better or worse than your old dreams. They are only different.

6. Sometimes, you will wish you weren’t on this path.

7. Some people will be afraid of your child. They will pull their children away from your child as if what she has is catching. This will always hurt.

8. Some people will surprise you with their compassion and generosity—often the ones you least expect.

9. When your child is screaming on the sidewalk, people will stop and stare. Just wave and wait for your child to stop screaming. Then help her up and keep walking.

10. Your child might qualify for Medicare. This is a Godsend.

11. If you have a child who roams at night and they are too big for a crib, investigate a Sleep Safe bed. It will keep them safe at night and you will be able to sleep without worrying. Also, it might be covered by Medicare.

12. You might still be changing diapers on a ten-year-old.

13. Your child—who still wears diapers—will find new ways to take them off at night and throw the mess around her room. She might not be able to feed herself, but she will be able to get out of her diaper. To combat this, duct tape the diaper tabs to the diaper.

14. If your child gets out of her pjs at night, put her in footie pjs, but put them on backwards.

15. Finding a babysitter will be difficult.

16. There is respite care available for special needs kids, but they won’t watch your non-special needs kids.

17. There are summer respite programs/camps for your child, and often they are covered by Medicare.

18. Sometimes your other children need a break from your disabled child. Take them to a movie or to the park. Or put your other child to bed early and play a game.

19. Sometimes you need a break from your disabled child. Even if it’s just going for a cup of coffee while someone watches your child. Do it. You are more than your child’s caregiver, and you must take care of yourself so that you can take care of your child.

20. Laying down across your child to restrain her while a nurse tries to place an IV will become normal, but it will break your heart every time.

21. You will learn to differentiate Bad seizures from Normal seizures.

22. If you have a daughter who has seizures, they might increase when she hits puberty.

23. Along the same lines, there are shots to stop her periods once she hits puberty.

24. Still on adolescence, you will worry that someone will hurt her (by hurt, I mean rape) and she will never be able to tell you.

25. Your other children might become wonderfully accepting of others because of their disabled sibling.

26. Your heart will break as you watch your daughter longing to play with other kids, but unable to.

27. Going to the park might be difficult if your child eats mulch.

28. You will love the kids who reach out to your child.

29. Sometimes people will say stupid/hurtful things. Try not to let it bother you. I tell myself they are speaking out of ignorance.

30. Sometimes people will act as if you are a saint because you have a special needs child, when you’re just trying to be a parent. This is extremely irritating. Again, I just nod and tell myself they are trying to be nice.

31. You will develop your own way of communicating with your child. It might not be standard, but you will understand each other eventually.

32. Sometimes, you’ll need to take a break from the speech therapy, physical therapy, occupational therapy and just be a Mom/Dad. This is OK. Do not feel bad about it.  Do not let others make you feel bad about it.

33. Everything you feel will be intensified. You will have higher highs, and lower lows.

34. Some great blessings will flow out of parenting this child. So will some great hurts, but this is true for every parent.

35. Humor helps everything.

I’m sure I’ve forgotten a lot of things. If I have, please add them in the comments. This list is not meant to scare anyone, but to let you know you’re not alone. Everything you’re feeling is normal, and some of us have walked this road before. If you’re reading this and you don’t have special needs kids, the best thing you can do for someone who does have a special needs child is just to be a friend. It’s difficult and lonely sometimes, but having friends makes everything easier.


  1. Stephanie, this is the post on which I wanted to comment. This is touching and beautiful in so many ways, I don't know where to begin. It starts with your feelings toward your wonderful friends (and I know who), then surprises me further with more heartfelt emotion than I can take in. Thanks for this.
    Steve M. (I'd just sign as "Steve," but since you're married to a Steve, I thought I'd save you that little tiny extra thought process. :)

  2. Thank you, Steve. It wasn't easy to write, but hopefully someone will read it and feel a little less alone.

  3. I think we are soul sisters at heart. I totally relate......and isn't it nice to know that we aren't alone?

  4. Going through this journey with others makes it so much easier! Standing beside each other is the best thing we can do.