What? Me? A guest speaker? Will's teacher asked me to speak to other 'transitioning' parents this week at a school meeting, to offer my experiences and tips. As I told her, I hope I can live up to her expectations. This sent me looking through all the paperwork I have accumulated from transition seminars and workshops,
Checklist: 1) file for Supplemental Security Income (SSI) - they can start receiving at age 18; 2) check in with the Office of Rehabilitative Services (ORS) which I did about 1 year before leaving and Department of Behavioral Healthcare, Developmental Disabiities & Hospitals (BHDDH) - I started doing this about 10 months before he turns 21; 3) apply for guardianship - this we did at age 18, and healthcare like Medicare or Medicaid - we are doing this now (probably a little later than we should have) with his caseworker; 4) check with your teachers about a vocational assessment being done; 5) get the Supports Intensity Scale (SIS) done - this we did in the late spring of this year. We did this early since someone told me it is a good idea to have his letter of funding with me when we went to visit agencies so they could see what help he is getting and how they can fit. After all these are done, you should be close to your child getting out of school at 21 years of age. Now you start looking at a variety of adult services whether they are day services or residential. Take your child with you so you can ask him/her, if they are verbal, what they like or do not like. If they are like Will, non-verbal, just watch for reactions like if they stop to look at things or seem extra interested in some activity or room; or do they just want to move on and get back to the car. Right now our state is redesigning their work programs so many agencies are not taking names. I was told by some agency directors that it is a good thing I am looking what is considered 'early' at programs because I still have a shot at getting in before more places stop accepting people or can get Will's name in so he can hopefully start fairly quickly after leaving school - there may not be a long span of time staying home and getting 'real comfy'.
We are seeing the light at the end of the tunnel, Will's name is in 2 agencies with people looking over his 'application' - hopefully he will split his time, one for work & one for community time. Besides talking to your child's teachers, go to any and all informational seminars and workshops. They do provide a wealth of information - both written (tons of brochures and booklets) and verbal (lots of agency representitives and don't forget the other parents). Some of these agencies can help you manage your way through all of this as well. I have several other posts regarding our experiences on my other blog so please feel free to check it out: A Lifetime of Special Needs
(picture from ROS site) The ROS Play Therapy System now has Elvis on its variety of games designed for those disabled with Alzheimer's, ...
I saw these in an email from Caring.com . It was an article about whether caregivers liked these elastic shoelaces, called Locklaces . I h...
I received a letter from our healthcare provider offering a special service through Social Security. We are in the process of filing for SSI...
Your Mother carried you inside of her womb for nine whole months, she felt sick for months with nausea, then she watched her feet swell and ...
I received an email with a post from BrightStar about making sure that everyone, from senior citizens to those with disabilities be allowe...
(picture from 'A Place for Mom') ' A Place for Mom ' awhile ago had an article about 7 things to think...
I was reading through an email sent to me by Caring.com , a site I just found out about this past weekend that deals with caregivers and sen...
(picture from the Holland Bloorview website) I found this on the website for The Holland Bloorview Kids Rehabilitation Hospital website, a...
Will and his favorite things: computer, printer, papers to show all the things he wants. Read more ...
As Advent starts, our church parishoners carry on a 'tradition' if you will (we have been doing this for about 4 - 5 years), of hono...
4 Signs of Caregiving Stress Overload
ElderCarelink email posts 4 signs that should not be overlooked by you, the caregiver, or a close family member or friend. They report that even though the immediate caregiver may not be helping in direct care, the mind is never far from the needs of the older person, thinking about meals, falling, medications. Take the opinion of a family member or friend if they are telling you that you are stressed. Four signs: you skip your own physicals; you isolate yourself from others; you eat and/or drink too much for good health; you are short tempered with the elder, your spouse or your children. If any or all of these sound familiar, take a break no matter how short in order to recharge. For more information on caregiver stress see ElderCarelink
You can check out my ranting and stream of consciousness writing about looking at adult service providers with Will.
A Caregiver's Poem
I was looking through a 'Caregiver's Blog: Senior Care Support' and came across a poem that was shared by a writer, Dana, from the blog. The poem was written by Becky Netherland and Dana's grandmother shared it with her. I thought it was great and there is not much to say about it - just read!!! Enjoy!!
(picture from Caregivers Blog)
I’ve traveled paths you’ve yet to walk
Learned lessons old and new
And now this wisdom of my life
I’m blessed to share with you
Let kindness spread like sunshine
Embrace those who are sad
Respect their dignity, give them joy
And leave them feeling glad
Forgive those who might hurt you
And though you have your pride
Listen closely to their viewpoint
Try to see the other side
Walk softly when you’re angry
Try not to take offense
Invoke your sense of humor
Laughter’s power is immense!
Express what you are feeling
Your beliefs you should uphold
Don’t shy away from what is right
Be courageous and be bold
Keep hope right in your pocket
It will guide you day by day
Take it out when it is needed
When it’s near, you’ll find a way
Remember friends and family
Of which you are a precious part
Love deeply and love truly
Give freely from your heart
The world is far from perfect
There’s conflict and there’s strife
But you still can make a difference
By how you live your life
And so I’m very blessed to know
The wonders you will do
Because you are my granddaughter
And I believe in you.
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