Monday, April 16, 2012
Welcome to the first post of SNACCERS. SNACCERS as you can see stands for Special Needs Adult Children Caregivers. In other words, if you are the parent of an adult child (18 years and up) with special needs, and you are involved in caregiving in any fashion for your child, I think you will enjoy our blog. You may want a clarification of what it means to be a caregiver. Well, there are many ways in which to be a caregiver. In my case, my 21 year old son with autism, Blake, sort of lives at home. "Sort of" because he lives in his own home which is attached to my home. Like a mother-in-law cottage. He has 24 hour supervision, which isn't myself all the time,but I'm quite involved. I do a lot for him, but also have help. So I am a Snaccer. Now there are many other types of caregivers. I know people who's child lives in another setting, but they are still actively involved in managing their child's life. They are most certainly Snaccers. Then of course, many individuals still live directly in the family home.
What kind of SNACCER are you? Where does your child live? Tell us about your situation.
Val
Subscribe to:
Post Comments (Atom)
8 comments:
Hi Val!
We have met several times and have talked on the phone over the years. We have Jordan who is now 19 and living at home. He has autism and in puberty has been diagnosed with Bipolar...and now on heavy medication. We have searched for a "group" home the last several years...found one only to be informed that to get into one is now more of a challenge. We found one we love..but the state has now made it more difficult. The rumor is that group homes may be come a thing of the past and Foster care will the way to go. That frightens me beyond measures. Jordan needs to carry on with his piers..not in some family maybe with small children. Very Scary!
Love this new blog!..What a great idea!
Hi Amy!
I know how you feel! My son relies heavily on meds to control his aggressive and self-injurious behaviors. I wonder why so many of us have adult children with these behaviors. I agree it's very scary. Where did you hear that group homes may become extinct? I really think we are going to eventually need to create residential communities. One of my objectives of starting a blog is to get parents talking about the issues, and the present and future living situations must be addressed. Thanks for being brave and being the first one to post. I've gotten a lot of visits today (our first day!), but you are the first one to write a comment. Hope to hear from you again soon! Please parents: post post post. We need to hear from each other!
well I will try again. I wrote everything out and it never posted. This is your cousin Karen and as you know I too have an adult son who is special needs. he just turned 25 and is not labeled autistic but does have autistic tendency. You are very lucky to have the living arrangements you have with Blake. I don't think many people have that but it seems to be the best of all worlds. Jake goes to an adult day program which I just love and he can stay there forever. he still lives at home and I don't see that changing anytime soon. His behaviors are manageable but that is because he is on a wonderful cocktail of medications. they keep him alert and yet very compliant. he is seen by a pharmaceutical Psychiatrist and she has been managing his meds for many many years. we know they work because the early mornings are very difficult with him until after he takes his medications. He is pretty low functioning when it comes to his self care and needs constant supervision because he gets in to mischief trouble all the time. Life for all of us has been a big struggle and I don't see it getting any easier. I used to think it would get easier when they were bigger but people are much more tolerant of the young than they are of adults who don't act appropriately. this Blog is a great idea and I hope you get many participants. Thanks for starting this
Hi Karen
Thanks for persevering and commenting. I totally agree with you that people think life will become easier when our children grow up. That can't be further from the truth which is why I think it is very important to have a blog for parents who have adult children. I hate to participate in generalized groups in which the predominant group has children who are young. I certainly wouldn't want to post my experiences and opinions as they would be terrified to hear what is coming. As our children grow up, they get bigger and stronger. And we get older and weaker. It's not a good combination to say the least. Our children sound similar in terms of needs. Next year will be a deciding year as Blake will be ending school and has no place to go after that. I'm am trying to think of some ideas, so hopefully by then, I'll have something going.
Hey Val! Glad to see you started this. As you know, and we just talked about it the other day, Marc Anthony just turned 18 a few days ago. Yep, it's been over 16 years that I know you and it must have been an Angelthat guided me when I opened the phone book that day and found your number under "speech therapist"! You have ALWAYS been wonderful to my family, but that's because you are a WONDERFUL person. Miss you not living here anymore. I will definitely be checking in frequently on here. And to my BFF Amy, GLAD TO SEE YOU ON HERE TOO! Ro
Val, I find it hard to believe that there are no adult programs where you live. thats terrible. we don't have a lot here but there are some and after visiting and searching thru as many as I could I found one that was exactly what I was looking for. Jake is not capable of doing any work without constant supervision and I really didn't want him stuck doing menial work which would bore him silly. Almost all of the programs I looked at were work related and I was not happy about that. then I ran into another problem and that was if it was paid for by medicaid they were not allowed to leave the premises for more than 15 minutes which I thought was ridiculous. So we have a program here called Real Life Choices in which we are given a certain amount of funding each year and we get to design our own programs or schedules with places that have been approved only and use our funds accordingly. I found a wonderful day program that accepted the monies from real life choices and yet was free to do what they wanted as far as scheduling. Jake has a very busy schedule each week of activities and they do have some work stuff they do but they are never forced to do it they can do another activity if they want. Some of the things they do on a weekly schedule is bowling ,Zumba, yoga, Music , speech therapy, cooking, dancing and so much more. they have therapy dogs come in and they go to shows and lunches and swimming 2x a week in the summer. I could send you a copy of his schedule if you were interested. Every week is filled with exciting activities. This year they are having a prom. This program was started many years ago by a group of parents that had nothing or anyplace for their adult children to do. It has a max capacity of 25 clients. The first year we were on RLC we had a lot of extra funding and Jake went horseback riding for 2 hours a week and took an outside gymnastics class and a drumming class. but then his program raised their rates and we don't have a lot left over. we still have enough to pay for an aide for 20 hours a week. and we had that also the first year and it was the aide that took him to these places. This year he took a horticulture class. So maybe an option for you would be to get a group of parent like yourself and start a program like this. They have a board of directors and the parents are very involved. quite a few of the clients live in group homes and are transported from there. We have a wonderful director and a very dedicated staff and a large number of volunteers that help out in the program. I have to sway I am so pleased to have found this place. So many of the others were like institutions or not warm. this is in a large house purchased by the group of founding parents. Maybe one day you would like to come and visit and maybe do the same thing in your area. this program has been going for many many years. I hope this helps give you an idea. I love this idea of the blogging.
I just had the chance to read all 5 of your posts and the comments. I decided to post more details on your June 7, 2012 post but first I am going out for a couple of hours (it is after 8 AM here in Israel, 7 hours ahead of Florida)
Arthur Golden, 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)
Post a Comment