Planning the Future: How does a special needs parent start?
by admin on October 21, 2009
in parenting, special needs
I’ve been giving a lot of thought lately to my kids, and a bit less thought about their futures. In my heart of hearts, I know this is not correct, but sleep deprivation and my sense of overwhelm have put me lately on a day-by-day management track. That is, it’s taking everything right now just to get through the day.
A series of things has happened, though, that has got me thinking about more long-term planning for my girls. First, Zoe had an IEP last month that I was NOT equipped for, in terms of prep or alertness, and I showed up alone while they brought in the big guns. I tried to negotiate to get her an extra day of school and, in my failure, I am now paying the price as she is super-resistant to going AT ALL.
Chris and I have been discussing converting her huge, empty walk-in closet to a study, so that she has a place for homework and nothing but educational things on the wall, like sight words and number lines.
Amelia has been having great difficulty with homework, which made me realize that our decision to put her in full inclusion – which I still believe was the correct option – came without me really understanding what it meant. I made some calls and got some support and information. Meanwhile the school called for a new IEP since her old one recommended something other than full inclusion, which is all they offer, so that is set up. In addition, she has a new eval for TSS services scheduled next month, and if a TSS in school is required, that should cover it.
In addition, I’m reading a parenting book for review (I won’t divulge yet) and one of the things it covered goals for your family. Then today, I took a look at this page which contains a video ad for life planning for special needs parents on the inside cover:
Exceptional Parenting Magazine
The timing on these things was pretty simultaneous, and it got together one point for me: we need to plan realisticly and completely for our kids’ futures. We talk about this sometimes, but for now, I can start with the IEP planning and what we want for Amelia’s education. I’m also going to be in there to ask her teachers what I can do, without becoming a teacher myself.
For those of you have special needs kids, what was the defining moment where you decided to plan for your kids’ future? What did you do? How did you begin? I want to hear your tips and advicse to help me raise kids who are happy and lead contributive lives!
I wrote a Parental Concerns/Vision Statement for Kayla as part of her IEP. It’s pretty vague, but it gives everyone an idea of what I’m expecting.
http://oppositekids.blogspot.com/2009/07/kaylas-vision-statement.html
Thank you Ecki! That is helpful! What a great and simple idea, my favorite kind, lol…
When my son was in preschool I arranged for an attorney familiar with legal issues for children and adults with developmental disabilities to speak at our Special Ed PTA meeting on education related issues. He felt it was important to also talk about future planning, wills and trusts. As he described the rather unpleasant realities of children left orphans by parents without wills I felt very anxious; when he spoke of the additional complications for children, teens and adults with developmental disabilities whose parents did not make wills that created trusts and other protections for them, I was horrified.
When I had a will written I learned about something called a letter of intent that is referred to in a will but can be changed without having to update the will. I put a lot of thought into that – with messages for both of my children and indications of what events, trips and vacations I wanted my son with Down syndrome to enjoy, using any money that was left in the special needs trust for him. As he grew up I added to the letter and of course updated it considering his interests and experiences.
Thinking about what we want for our sons and daughters if we are not here for them naturally leads to planning a better quality of life and richness of experience for them while we remain. I realized I did not want for him to wait until I was gone to have the best possible life!
One of the most enjoyable outcomes of moving in that direction was attending a “Person Centered Planning” introductory meeting sponsored by our county ARC and local school district. My son was invited to participate in a demonstration and it was an amazing experience. Other teens and young adults at the meeting all had such different levels of participation, or perhaps I should say, ways of communicating – but they were the true centers of the planning process and each one of them just knocked me out with their ambitions and goals, their interests and accomplishments.
I wrote an article about it quite a while back:
Person Centered Planning
http://www.bellaonline.com/articles/art53731.asp
There are great books by John O’Brien and Connie Lyle O’Brien
http://tinyurl.com/PersonCntrPlng
and I am sure they must have a webpage, too.
It’s good to think about these things well before our children reach the transition ages of 18 and 21 – but we get so busy with day to day life and our various family adventures it’s a wonder we can plan a weekend more than a day in advance. Remember all the professionals in our children’s lives have vacation and retirement benefits already in a certain structure – and they will be living their own lives with their own families in ten, fifteen and twenty-five years without any responsibility at all for our sons and daughters. And that is just as it should be – but we also need to take some time to make a five year, ten year, and twenty-five year plan.
Thank you for bringing up this topic ~ it’s one that needs to be revisited often, like changing the batteries in smoke detectors.
Pam W
SE of Seattle
Hi Pam, thank you so much for sharing your resources and experiences! This is something that needs to go on my families very long to-do list. I’m on the mailing list of the the ARC out here in PA and I will try to attend the next time they have a conference on planning. GREAT advice!!
I am not sure this will help but my family and I created a board game called Erudition that incorporates both sight words and phonics.
This award winning game helps children learn to read, spell and understand the most common words in the English language while playing an entertaining board game.
For additional information, please visit our website at http://www.sightwordsgame.com.
Thanks, Denise! The game looks really cool. Amelia doesn’t do well with board games yet; until she masters counting, that’s probably a little ways off. But it does look promising for my readers. thank you for sharing!