Thursday, May 9, 2019

30 things special needs moms do—is this you?

Perhaps you have a child with cerebral palsy, like I do. Or you have a child with autism. Or Down syndrome. Or vision or hearing issues. Or ADD or ADHD. Or muscular dystrophy. Or spina bifida. Or cystic fibrosis or another genetic condition that causes disabilities. Our children may have different diagnoses and yet, we have so much in common. Is this you, too?

1. You've cried outside the doctor's office, outside your child's school, driving in the car, pulled over to the side of the road, sitting in the car in the driveway, standing in the shower, hiding in someone's bathroom, lying in bed at night.
2. You've had pangs of "Why him?" or "Why her?"
3. You've had pangs of "Why me?" too.
4. You've tortured yourself by obsessively reading and rereading the child development books and newsletters.
5. You've gotten past all of that (excluding the occasional sobfest after the IEP cause they can have that effect) and no longer consider your child's diagnosis a tragedy because your child has proven to be quite awesome and now you know: having a disability is one aspect of your child. Like any child, he is the sum of his parts—his personality, his brightness, his emotional IQ, his talents, his quirks.
6. You've developed, right along with your child.
7. You've bought enough toys for your child, in the hopes of stimulating him and making therapy fun, that your playroom could be mistaken for a toy store.
8. You celebrate the inchstones, right along with the milestones. Every new movement, every new sound, every bite of new food, every ounce gained, every single step forward is worth a squee!
9. You have also secretly cheered your child's dubious achievements, like throwing a bread roll across the table at a restaurant (grasping!), telling a lie (cognition!) or muttering a Bad Word (speech!).
10. You have watched your child undergo procedures and tests and surgeries and wished it were you.
11. You've paid, like, $45 for an adaptive spoon. Or crayon.
12. You've become a master of the "Why are you staring at my child and what's wrong with you?" look.
13. You've hung outside the restaurant/program/activity/event with your child while the rest of your family is inside because she's just not having it.
14. You've asked the therapist for more exercises to do with your child...then didn't do most of them. Or even any.
15. You've google-stalked doctors and phone-stalked their assistants to get appointments.
16. You feel like you practically have a medical, nursing or therapist degree. Or at least an honorary one.
17. You've felt like friends don't totally get it. But you've found online friends who do.
18. You've raided the snacks your child uses for feeding therapy.
19. You've slept on the floor next to your child's bed to make sure he is OK. Or let him sleep in your bed. Or crammed your body into his bed.
20. You fantasize about taking naps.
21. You fantasize about having a live-in speech therapist/occupational therapist/physical therapist/AGBA therapist.
22. You keep a copy of your child's medical records in your car, because you never know.
23. You are living, breathing proof of just how much stuff a single human being can remember to do—sign the forms! Call for a refill! Reschedule that appointment! Look into that program! And don't forget the kajillion other things!—without their head exploding.
24. You've listened as people have asked you questions about your child, as if she weren't standing right there. And then you've said, "Why don't you ask her?"
25. You've taken your child to doctor after doctor in hopes of finding answers until you've finally accepted that more doctors does not mean better care and can actually be quite depressing and maybe nobody has the answers right now and so you should focus on tending to your child's current needs and help him and enable him the best he can. Period.
26. You've learned to ask for the supervisor when you're on the phone with the insurance company. And their supervisor, if necessary. And that one time, you threatened to call your lawyer. Not that you have a lawyer. 27. You've roamed the aisles of the drugstore to relax.
28. You've managed to not lose it when relatives have said, "He'll grow out of it!" or "It's nothing!"
29. You've felt overwhelmed by guilt that you're not doing enough for your child. Then you accepted that you're human. Then you felt guilty again. Repeat, repeat, repeat.
30. You've become your child's biggest champion, spokesperson and publicist, that parent who doesn't shut up or let up. Someday, your child will hopefully advocate for himself but for now, you are there to make sure he gets what he needs and deserves.

Photo: Getty Images


Thanks for sharing!

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