I found out a friend of mine from high school has a child with PDD-NOS (that's pervasive developmental delay, not otherwise specified, which is on the autism spectrum). Her son is 12. I was looking at pictures of him on her Facebook page, and saw my son older. Her son looks like mine and wears glasses like mine. She gave me her phone number and I will be calling her soon to talk about her experiences with medications and therapy and advocacy. It will be nice to talk to someone who's been there.
Yesterday my son head butted my 17 month old daughter hard enough to knock her down and leave a bruise on her head. I hope that medication helps. He still needs to get his EKG first because the medication, Tenex, is a high blood pressure medication that's used "off label" for autistic and ADHD kids to help them calm down, sleep, and decrease aggression. The therapists and teachers at school are dead set against it, by I have to protect my daughter too.
Just getting ready in the morning is difficult for my son. He usually doesn't want to get up (although this morning he woke up singing) and bangs his head. He doesn't like to have his diaper changed, so he bangs his head. He didn't want to go to school today, so he banged his head. He wouldn't let me put on his shoes, he insists on wearing his boots. So, I gave in. He won't wear his spring jacket, he insists on wearing his winter coat, but he wouldn't even let me put that on. His not wanting a coat on has been going on for a week or so. I've tried singing, coaxing, having him try to put it on himself, choosing which coat to wear, and asking if he wants it on at the top of the stairs or the bottom of the stairs, but I always wind up having to wrestle and force his coat on. If we go out, he only wants to go in one of our cars. If we want to take the other car, he has a huge tantrum. If we're on the way home and have to stop someplace on the way, he gets upset because we're supposed to be going home. Everything is difficult. Everything takes tremendous patience.
I was talking to a friend yesterday who works with my husband, and she told me how tired he looks. He works three jobs so that I can stay home with the kids. He makes a lot more money per hour on the weekends than I could ever make, and that's why he works and I stay home. We are each other's only source of respite, and we're completely drained. I have a mother's helper come over for two hours a week so I can catch up on cleaning, but my husband and I never have time for ourselves. We've only been out alone twice in the past three years, and that was just for dinner. We're both tired. He works all the time, so I'm home alone all the time. I felt so guilty that he has to work so hard and he's tired. If my son could go to daycare, or if there were someone who could watch him and my daughter during the day when they are sick or, when I have to go to therapy meetings, or when they have to go to specialist appointments, then I could work. I'm very grateful for how my husband works so hard every day, and then he comes home and plays with the kids so I can cook dinner. He's a wonderful husband and father, and I am absolutely blessed to have him in my life.
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My son was diagnosed with PDD-NOS when he was younger. Now that he's 10 yrs. old, doctors will not continue that diagnosis because he no longer displays enough of the symptoms. Don't let anyone make you feel bad about giving him the Tenex. I think it's any parent's absolute last resort to give daily medication but you must keep your son and your family safe. My son takes Clonidine (also a blood pressure medication and Risperdal) The Risperdal helps to control mood swings and lessens tantrums and such. The Clonidine helps with his hyperactivity and impulsiveness. He's much happier since he's been on the meds and even requests them at the appropriate times because he feels himself getting out of control. They've allowed him to fit in more at school and have helped him concentrate on learning instead of fighting behavior issues. I wish you all the best. I know it can feel like you're the only parent on the planet who is going through this.
Your last paragraph sums up why I am not working. My husband sounds like yours. I am trying to get a respite care worker, but it's not easy to find someone I trust with my son.
Thanks so much for the support, Carla. As I'm sure you know, it can be very isolating to be a parent of a child with special needs, so it does feel like I'm the only one sometimes, even though I know I'm not.
Tammy, it's good to know that I'm not the only one. My son is in the Medicaid Waiver program which provides Medicaid to disabled children without regard for parental income. They offer respite, but it takes forever to actually get it. I put in an ad at a local university for a Mother's Helper, and have had a lovely college student watching the kids while I get some housework done for about a month now. I can only afford to have her for a couple of hours per week, but it's still an enormous help to my sanity. The next step is going out with her and the kids and me, and then babysitting...because I don't trust anyone either. So, we're taking it slow, and this way, I can show her how to handle behavioral situations that come up so she's not dealing with them all alone...then when she is alone, she'll know what to expect, and I'll know she'll know what to do.
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