Sorry it's been awhile since I posted. Been busy. I'm sure you know the feeling. :)
But I am going to try to make a committment to post each week. So please come back next week!
Meanwhile, I want to post about a conversation that I had yesterday with an acquaintance. She is a very nice person, and I mean her no disrespect. She is not a parent of a special needs child, just a friend. But she said something that made me cringe a bit. She's about my age-mid 50's. We were talking about the future. I mentioned that I was getting a bit old to be doing what I've been doing (I was referencing the micromanaging of my son, Blake). I told her that I couldn't imagine doing it at this pace in 10 or 15 years down the road, and that eventually I needed to figure out another option. I guess because she is around my age she was taken back at the reference of being "too old?" I don't know. But she immediately jumped in and said, "you're not old!" Of course, I then referenced my comments back to the management of Blake and how a person of my age wouldn't normally be taking care of an adult child with special needs and all that goes along with that. "Okay, okay," she commented in relief realizing that my life bore no resemlance to hers, I suspect. I soothed her even more by saying that I still feel full of vim and vigor (haha), but not necessarily all the time. I mentioned that being in the mid-50's is not old to work or go on cruises (yes, I was a bit passive aggressive, I admit), but a tad bit over the hill for wiping behinds a (big hairy one at that!), dealing with school issues, and lots of doctor appointments. And having to be home at 10PM on a Saturday night to relieve the caregiver. Yes, a bit old for that. She got my drift!
This isn't the first time I have received comments that are in the same vein. When I clarify, there is always the risk that I can make the listener uncomfortable, so I am careful when elaborating to be sure that the they understand that I take it all in stride. It's my life. And to be honest, I'm pretty darn happy most days. It's not easy, but I'm really ok with it. I know that I maybe can't plan like other people my age. My husband and I don't travel like our friends. And I know I have a lot on my plate. But I think I have a very deep appreciation for days that are uneventful, and I noticed recently that I don't ever complain about being bored.
4 comments:
Boy! I sure understand! I am Mom to JJ age 24 with autism and I am 57! I worry about when i can no longer take care of him and he is quite a handfull now! My Husband is retired and helps me alot. I couldn't do it all on my own. I also have a son who is 40 but even tho I talk to him alot he doesan't help with JJ.
I can certainly relate to the wiping of the hairy butt and that alone is a chore. It is especially difficult when out in public using the public restrooms and not having wipes along. it is much easier when my husband is around and can take him into the mens room. with My husband being a lot older than me the chances are I will out live him and wonder what the future holds for us. There will come that time when I can't take a 35-40 year old man into the ladies room any longer which will make our trips even harder. No our lives are not like our friends. we are restricted to what our adult children with disabilities can tolerate. Most of the time it is just a fact of life but tonight I was looking on Facebook an saw friends of mine on all of these wonderful vacations. Even if we can take them on vacation with us ,which we do ,there are plenty of excursions we can't do with them. such as water sports riding bikes etc etc. so we have learned to adapt to what we are able to do in our lives accordingly. I look around and many times see people who are so much worse off than I and for that is the times I feel so grateful for what I have.
I am a friend of Karen's, and I am the mom of a 25 yr. old son with Cerebral Palsy, mental retardation, and autistic behaviors.
I share many of the same concerns that this blogger and both Lois and Karen have.
My son, although a very lovable and childlike young man, is quite loud and demanding. When we are out in public, it infuriates me when people look at us with disgust and annoyance instead of with understanding and compassion. We rarely, if ever, go to fancy restaurants...but last weekend while dining at Wendy's with my hubby, both my disabled son and our 17 yr old son, and my 90 yr. old Aunt...a woman about 70-75 yrs old was "giving me the daggers", and actually got up and moved to a more distant table.
As she walked past, I said rather loudly..."Oh dear...I hope we didn't ruin her 5-star dining experience". I know...immature on my part, but it was better than what I really wanted tyo say.
I often say "Walk a mile in my moccasins before you open your pie-hole".
Oh, well...just venting :-)
To Valerie Herskowitz:
In my 2 short posts last week, I identified myself as the "father of 40 year-old nonverbal autistic son Ben, who has lived at home with both parents for past 16 years in Israel (but born and mostly educated in Boston, MA USA)" Ben is the oldest of 3 children, so while he is about 20 years older than your 21 year-old son Blake, we his parents are "only" in our mid-60s, about 10 years older than you. I used to be a lawyer in Boston, MA, USA and as a volunteer I still have been helping parents of school-age children with disabilities in the USA so I am fairly current with IDEA.
I will wait for you to bring up specific subjects about adult children with disabilities, but I may be able to offer you some advice in Florida. Blake seems to have about one more year of entitlement under IDEA for FAPE and you mention there are no adult services for Blake in your area. However, IDEA includes Transition Planning as part of the IEP at age 16 which mandates the involvement of adult services. Do you want to discuss what happened to Transition Planning?
Arthur Golden of Jerusalem
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