HAWMC

HAWMC – Day Twelve: Free Writing Based on an Image

Chrisa Hickey6 comments1987 views
Staff
Image by Vivadança Festival Internacional Ano 5 via Creative Commons License

I’ll be a parent forever. 

Of course, my children will always be my children, but I will have a child at home, living with me, dependent on me, relying on me to keep him safe and housed and clothed and fed until the day I die.  He will never grow into an independent adult, leaving me to pursue his own way in the world, independent and self-reliant.  I will carry him with the same level of care as I did when he was a toddler.  And the thought exhausts me.  

I could, I suppose, work to find housing and social services for him, to put him in an assisted living facility or monitored housing with food stamps and SSI.  But as much as the thought of having a child I need to parent in my home forever exhausts me and, frankly, saddens me somewhat, the thought of that child left to his own devices and risking relapse, loneliness, addiction, and homelessness is absolutely completely unacceptable.  I cannot let the son I love risk even coming close to that kind of life.  This is my life.  Carrying my son, forever.  And I accept that.

6 Comments

  1. I have those same thoughts everyday. My latest dilemma, maybe you have some advice, is school. My children attend a wonderful school that has provided excelent supports. Until this year. My daughter went into third grade and the support team changed. To sum it up, even with support in the classroom,(they help multiple children), she has a lot of time to drift. This means she is listening to the voices in her head more than she should because she is not stimulated or distracted. Budgets being what they are, they are trying to tell me next year she will have the same supports, no more. They have seen her have conversations with herself and laugh out loud inappropriately due to listening to her voices. Should I keep her home next year? I am just looking for opinions. Also, she is very developmentally challenges, so her academics are close to an end, also. I would appreciate any opinion or thought. I have no one else to talk about this with. Thanks

  2. Hi Lynn. Sounds to me like she needs a one on one aid to keep her engaged because they cannot educate her with the current student to educator / aid count. Everything hinges on the school providing her a "free and appropriate public education". If that means she needs a one on one aid to keep her safe and involved in her studies, then they have to provide one. BTW – her academics can still – and should still – go on. Tim will be 17 this summer with cognitive issues as well, and he's come up 4 grade levels in the past 18 months by getting him in the right program with the right supports. I'd suggest you go to http://www.wrightslaw.com and read up about what the school is required to do under Federal IDEA law. She should never be allowed to wander in the third grade!

  3. Thank you for responding and for your advice. This will be the first time I have gone into an IEP without the confidence of knowing the special ed department will do what is right for my child. I am in Wisconsin and there has been such turmoil with schools. It will be all about the budget. My daughter is not a behavior problem as such and would be happy to sit quietly all day coloring which is why I don't think she gets a lot of "attention." My son can be violent and has support 5 out of 6 hours a day. I do believe she can learn more, also, but not in a mainstream way. Her special ed teacher this year has her for 90 minutes a day(with 3 other kids) and just concerns herself with that 90 minutes. Not the rest of the day. The previous teacher was more of a wrap around. Any school issues went through her and she dealt with them. This year I was fortunate enough to have a mainstream teacher that enjoyed my daughter and went out of her way to help. But she is limited also with 19 other kids. I am also a special needs aide in public school myself in a neighboring town, so I hear the backside of this. There really is such a hole in this are. But thank you, I am going to bring some support to the meeting. My son has in home therapists and I think I will ask them to come with as a presence if nothing else.

  4. Lynn, that's a great idea. Be sure to let the school know you are bringing support (they are entitled to notice), but don't call them "therapists". Call them "advocates". That might change their tune a tad. Good luck – let me know how it goes!

  5. Once again Chrisa your timing on a post is perfect. I was told by my bio dad this afternoon that he is happy to help me with my day to day needs right now, but he won't help in anyway that supports my caring for Pickles. He then went on to say, again, that I need to "send her away to a state institution". Of course that prefaced with something like "I don't intend to sound mean or insensitive but…" Really? So how did you intend to sound. Anyway, thank you for posting this. It hit home and put it into words that I'm not sure I could have done tonight.

  6. Hi – well, that must have been hard to hear. I don't think people that don't live our lives can completely understand. Yes – Tim is in residential treatment right now. But, he was nearly 15 when he went. It was never intended to be permanent. We plan on arranging our later years to accommodate Tim being with us. We're not resigned to it. We've chosen it. My best to you and your daughter.

Leave a Response