Sometimes it is hard having an older “child” with special needs. I will admit that there are times when I wish I could turn back the clock. Granted, they are few and far between, but if I’m honest, I do have them.
There are things that are easier when she was smaller. She still has the mind of a toddler in a 6 foot tall frame. She loves to swing, but the trend today is to take out all the old style swings and put in big play structures. I watch her struggle to figure out how to play in a world that is too small for her. It breaks my heart.
When we would go to the grocery store, so many would stop and say how cute she is. Now, it’s mostly stares of disgust because she still drools.
No, it’s not all bad. We live in a small town and shop at the same Safeway. All of the people who work there know and love Taylor. There are cashiers that tell me she lights up their day with her smile when she comes through their line. I love those people.
I’m not trying to write a whiney post but these are just things that are on my heart lately. I used to belong to an online support group for Trisomy 9p. I eventually stopped posting and left the group because there was just no connection with the other parents for me.
Taylor is one of the oldest, still living, T9p kids. She also has a lot of medical issues. She was also one of the most profoundly developmentally delayed. The parents of the younger kids didn’t want to think of their kids being as affected as Taylor. I understand that perfectly. They didn’t want to hear about seizures & cancer.
Another mother who’s daughter is Taylor’s age also left the group. She felt the same. The other big issue is school and/or programs. Taylor loved school but she can only go until she turned 21. Then they graduate them. Most of her class went on to work programs. That’s not an option for Taylor. There are really no options for the profoundly affected “kids”.
Right now, Taylor is bored. She wants so badly to DO something but because we run a business from home, it’s not possible. She does get her respite care but right now, that’s a problem. Not because of her care providers…they are awesome people. But because of the brokerage firm that handles money & paperwork. I’m switching firms so hopefully, this will resolve the problems.
I know this sounds like a complaint blog and I apologize. I just needed to get it out. I guess I just want to help other parents because I’ve been through so much in the past 22 years. I just never know if the parents want to hear what I have to say.
Eh, I definitely sound whiney now. I’ll take a cue from my happy-go-lucky child and just smile
An older picture, but one of my favorites. She’s so stinkin’ cute!
