A letter from one parent (caregiver) to another ,
Hi, I'm Cindy and I'm President of Day Dreams, Inc. I'm also a mom. I have two adult sons, Chris and Caleb and my oldest child and only daughter is Corlisa. Corlisa aged out of the RESD program in 2004. Since the time she was 24 years old it has been my dream for her to have the opportunity to spend her day time hours participating in an organization like Day Dream's activities. And not just her, but other people with developmental disabilities also.
Since she was 9 years old she has had the Children's Medicaid Waiver and then the Adult Rehab Waiver after she turned 26. I worked hard pretty much full time for over two years advocating on her behalf to get the waiver. So now she has staffing available for over 40 hours a week and so she is luckier than most. But still she and her staff person have no place to go on a daily basis where she can participate in the kind of activities she enjoys and a place where other people there care if she shows up or not...a place where she is "expected" like the rest of the adults in our community. A place for her to talk about, and a place for her to look forward to going when she gets up in the morning. A place she can share her days (and equipment!) with others and where services she needs are available and activities she enjoys are held.
I looked into all kinds of situations. Places she and her staff person could go, things for them to do. Not only were the activities few and usually far away and not always appropriate, but she and her staff person get lonely always having to do these things on their own. I found out a lot of good information about people with disabilities and physical fitness and other organizations that were doing things similar to what I dreamed of. You can check out the resource page on this website to see some interesting and cool things I discovered (click here). I realized what she needed and what we were looking for did not exist in Gratiot County and the only hope was to create it.
I decided it was time for us to "give back" to our community. We are very grateful to have the benefits of the Rehab Waiver. It gives me time, as Corlisa's mother to work outside of the home. I was able to choose to work part time and dedicate the rest of my available time to Day Dreams Inc and to help make activities available for all adults with developmental disabilities in our community. Ideally when Day Dreams is up and running in its most complete fashion, we will have staff and transportation available so other parents with adult children with disabilities will have the same opportunity to make choices on how to spend their daytime hours, and maybe some time to give back a little too!
I found a great group of people that have brought us thus far...our founding board of directors (check them out here). A group of 12 people who work in the helping professions and care genuinely about our families and loved ones. BUT...now its time for YOU and ME and other parents and caregivers to step up and do what we need to do to get this done. We, as parents, are being handed a great prize from the founders and original board of directors of Day Dreams...Day Dreams Inc is up and running. We have our 501(c)3 which was not easy to come by, we have our website, we have a small budget to work with...all great things, yes, but no matter how wonderful the board members are, they can not go forward without your participation! The board members have worked hard giving of their time and energy...for you, for me, for our families. But unless we can kick in and do some of the "heavy lifting" for ourselves, for our futures, how can they, (and why should we expect them to?) turn this dream into a reality, without the help from the very participants the dream is meant to serve? We can not let ourselves be the obstacle in the path to making this happen for us and our loved ones! We all know its happened before, projects have failed solely because of lack of parent participation. We can be our own worst enemy, and I count myself in this group as well. In our situation its hard NOT being the obstacle in our own path...there are so many priorities we have to deal with!!! But this time we have to step up for the sake of our own survival!
Maybe this is the first time you've heard that an organization like Day Dreams exists. Maybe you've heard of us but didn't realize we need parent involvement. Maybe you didn't know there was anything YOU could do to help, or that you should be expected to help..but now you know and now is the time to do something. Text, email, call or click on the "Help" button for ideas to get started in turning Day Dreams into your dream and your reality. Be in on the ground floor of making decisions on what the dream will look like and make sure it meets the individual needs of your loved one. Join our board of directors, or help us begin a parent advisory group, or attend our activities, or be a Dream Catcher and make a financial donation or chose another way to participate.
I know its REALLY REALLY hard to volunteer and to spend time working on such a large goal when we are all just trying to get through the day! But think what its going to be like when your son or daughter doesn't have the option to go to school during the day. How happy are THEY going to be with no scheduled activities or structured day? How much are you going to be able to get done then? Do you rely on them going to school to work, to go to school or classes yourself, or to get a little breathing time to do all the other things you need to do for your self, for them and for the rest of your family? The day is really going to come when that bus is not going to show up anymore and you will not be able to rely on school to provide for structured activities or for any other of the services they provide during the day (PT, OT, exercises, programs, leisure time activities, computer activities, lunch, etc) It will be all gone and there is currently nothing there to replace it. Trust me, it happened to me and Corlisa and to every other RESD student at age 26 or before. It will happen to you and your son or daughter.
NOW is the time to get it done. And you and I as parents are the ones that need to make sure it gets done! In the 60s, and 70s there was a very strong parent advocate group in Gratiot County that were big players in getting the "free and appropriate education for all" legislation passed. Before then, if your child wasn't considered "appropriate" for school, your child stayed home, period! That group of parents also started Camp Monroe in Gratiot County, a 70 acre recreation area with a lodge and cabins for people with disabilities between Ithaca and St Louis on Jackson Rd. There were 4 or 5 core couples that worked their butts off and many, many other parents that helped out however they could to make things happen for their developmentally disabled sons and daughters. You should check it out sometime. Its beautiful. But in the early 90's no one would commit to it's upkeep and it was donated to St Louis public school. What a loss for us.
Then our generation came along and (sorry guys, the truth may hurt) dropped the ball! We became used to government programs being there for us. We lost touch with each other as we competed for limited resources and were more often competing with each other rather than working WITH each other. We made use of the government programs (as we should have done) and went about our individual lives and lost touch with each other as parents. Lives became busy and both parents (if we are lucky enough to have two parents!) in the family needed to work just to keep our heads above water. Parent support groups weren't that necessary (we could find all the info we needed on the computer and at our local agencies) and who had time for them anyway, right?!!! Well, yes, right, at least for the time it lasted. But guess what, that era is coming to an end!
As government programs get eliminated and as our children get older and they finish school (just when we finally had that program going our way, right!) we find ourselves alone, cut off, and almost in the same position we were in when we brought our baby with developmental disabilities home from the hospital...what do we do now??? CMH and RESD talk about transitioning out of the public school program but have you heard what's available in Gratiot County lately? At one time there was MMI, a sheltered workshop that provided appropriate work opportunities for SOME people with disabillities but certainly was not ideal for many. But guess what, that's not even available in Gratiot County anymore! So what is? Not much of anything that I can find!
So now, it's our turn. Now is the time the after 26 issue needs to be addressed. We are the parents and caregivers that are going to make daytime activities and services available to people with developmental disabilities after they age out of the school program. Just because our children turn 26 doesn't mean they can be forgotten and that they no longer have a place in our community. It's up to us as parents and caregivers make sure this doesn't continue. Years ago our children lacked an appropriate place within the school system. Now our children lack an appropriate place within the adult community.
So now its our time. I'm very grateful for what our board of directors is handing to us right now. An opportunity to build on the strong foundation they have laid. Its a huge start...But no matter how much work was put into it, it's still only the foundation! It's up to you and me to get this dream built, the doors open, and enjoy the rewards!
Good news is, it will be ours. We can make it whatever we want it to be. CMH, RESD, other government entities will not determine what we can and can not do. We are a public charity not for profit and we have the opportunity to build this for ourselves and make it what WE want. The other good news is that other groups have done similar things (check the resource page) and many have said they would help guide us. Other folks have said they'd like to donate time and money, but they want to see our business plan, or a building, or something that shows that we are helping people with disabilities before they donate (wouldn't you?).
Its time for you and me to get to work. I'm willing to work my butt off, but not alone. I need the motivation and assistance of other parents. We need to know that others want this and need this as much as we do. Do you? If you do, then you need to call, email, text, or click on the help button. Obviously some are in the position to do more than others, but everyone can do something. Even if it's only sharing this information with others, sharing our webpage on your facebook page, talking and motivating each other in the forum on this website, or watching to see on the "support us" page what we need help with. Maybe you will know someone that can provide a certain service we need for a discounted price or something. But as a parent you need to commit to do something because this is YOUR future and your families future and what you do NOW will only make your life easier down the road. We will reap what we sow, so lets get down into the dirt and give this dream some roots and watch it grow through the roof!
Check out the support us page to see ideas big and small on how you can start helping today. Check out our calendar page and make sure you participate in as many of our activities that you can, or help us plan some activities! Our calendar is pretty empty so far, but activity by activity we will continue to fill it up until we have activities for your student to chose from nonstop between the hours of 9am and 4pm everyday (and a building of our own to have them in) Maybe you can sponsor, teach or somehow make happen an activity to add to our calendar. Other choices range from filling out a survey, sharing our website on your facebook page, making a few phone calls all the way up to helping with the business plan, help create our brochure, taping some 1 minute interviews....You pick what you can do, but pick something and do it. Click on the "Contact us" page and let us know how or what you can contribute.
I look forward to chatting with you on our website's forum...which is our techy way of having a support group that you can participate in when you have time, without hiring childcare and pick only the topics you want to talk about! Meet new friends and maybe schedule some individual meet-ups and outings for your student with another student. Be sure and sign up for our newsletter and check out our blog.
Thank you for your help,
Here she is at our Motz Park trip with Day Dreams Day Club waiting to go in the water in their cool floating wheelchairs!