Friday, October 29, 2010

The Complex Child

What are other families doing about their complex child?

This e-magazine is a collection of stories written by parents to parents of children with special needs.  It hopes to communicate pertinent medical information in an easy to understand way.

Check it out here!

Thanks to for introducing us to this great resource!

Let me know what you think of the magazine, helpful?

Wednesday, October 27, 2010

Does Standing Matter?

Positioning Standers Improve Health


Positioning standers play a very important role for people who are unable to weight bear independently, especially children and people with neurological disorders. Positioning standers not only provide alternative ways of positioning besides sitting, but there is also a long list of health benefits.

The most obvious benefit of standing is weight bearing. Weight bearing increases bone density, which is so very vital to people in wheelchairs. Without weight bearing, bones become brittle. Weight bearing also is the main premise of a very effective therapeutic intervention, NDT (Neurodevelopmental Treatment), which is widely used with people with neurological issues.

Tuesday, October 26, 2010

Quote of the Day

“Because I do not talk, 
don’t assume that I have nothing to say.
And because I do not move so well,
don’t assume that I can’t there.
Find me,
reach me,
and encourage.”
-Unknown Author

Gotta Love It!!!

Independent Living for People with a Disability

There are several living options for people with special needs regardless of whether the person has developmental disabilities, a brain injury, a physical limitation or is aging.  Knowing what is available and what’s been done in the past will help in choosing the right option for you and your loved one.
Following is a list of several traditional and creative living situations that provide varying levels of disabled support.  Later BLOGs will go into more detail on these different options but here is a basic overview, please post any independent living options you are aware of or would like us to investigate in future BLOGs.
1. Keeping your special needs loved one at home is a common choice.
At home you’ll know your loved one is well taken care of, many parents feel their disabled child (now adult) is their responsibility and don’t entertain the option of living outside the family home especially if the child is severely impaired.
Keeping a disabled loved one at home requires PLANNING to ensure that you can continue giving care without burning out. Also, that if for some reason you are unable to care for your loved one, there are supports in place.
2. Community Housing-Adult Foster Care (AFC) Homes
Adult foster care homes are a common living choice for people with disabilities.  AFC homes provide 24 hours 7 days a week care for residents.
There are many different AFC homes. The functional levels of the residents determine how most homes are organized.  When looking at AFC homes, try to find one with residents that are similar ages and levels of function to your loved one.
AFC homes often have community activities and socialization opportunities for the residents.  The socialization and recreational opportunities that AFC homes provide are a major benefit that many special needs residents truly enjoy.  Check and see if the home you are interested in has these options available.
Transitioning into an AFC home can be difficult for both the parent and the young adult.  Most AFC homes will allow prospective residents stay for an hour or two or a weekend prior to moving in.  Many people with special needs try a few different AFC’s on the weekends before deciding which AFC home is the best fit.
To find out more information on AFC homes contact your county’s branch of Community Mental Health.  Not all people with special needs are eligible for this type of service, however, if you are denied; it is your right to seek a second opinion. Don’t give up without a fight!  Know your rights, entitlements, and services available to you.   The following link lists rights and entitlements for Michigan residents. Click here to see Riverwood's support & services.
Click here to go to the link to AFC options in Michigan.

Creative Options

1. Parent Run Assisted Living.
On the east side of the grand state of Michigan, a few families got together and decided to share the responsibility among them.  Together, they rented an apartment for their three sons, all with special needs.  They take turns checking in on the boys, making meals, making sure that proper medicine is given, and overall safety.

Hello World!

Today is the beginning of something big. A tool into your hands to inspire, educate, encourage. A reminder that you are not alone, that people around the world are asking your same questions: What do I do with my child who  doesn’t eat? doesn’t sleep? can’t handle when I hug them? What am I going to do with my autistic child when they are all grown up? and so much more… This is a place where you can ask your questions, where you can steal ideas from others. Where you can think out loud…
Growing up with Cerebral Palsy wasn’t the easiest thing or the most fun thing… but it might have been the best thing. I have often told people in the past that I think everyone in the world should have had a little CP, it taught me that I am not always able to be independent; I cannot be totally dependent; but that we are truly interdependent. That there is nothing wrong with failing at something the first time.  My motto is actually, “everything goes better the second time around”. My mom would always tell me, “You are only handicapped if you believe you are”.
Granted, I still have limits – sure…. those limitations do not become my identity, or do not define my level of joy in this life. I still have full joy.
And I am here to offer hope.
This blog is here to tell you that you are not alone. We all are trying to figure out the answers to our questions like:
Where does my child with development delays go when they are grown up?
What can I do to make sure my child with CP is reaching the appropriate milestones
or maybe,
My child won’t eat!  What do I do?
What are your questions?  What are your thoughts?