Sitting Alone in a Special Need’s World.

Jonathan’s mom and I had coffee this morning.  She was talking about how lonely it sometimes feels to parent a special need’s child. You see Jonathan is in high school.  His freshman year.  He is in the gifted program and he loves football. It was the the first game of the season.   Jonathan was so

Why Everything Does Not Happen For A Reason

Originally posted on john pavlovitz:
That phrase. We’ve all received it personally gift-wrapped by well-meaning friends, caring loved ones, and kind strangers. It usually comes delivered with the most beautiful of intentions; a buffer of hope raised in the face of the unimaginably painful things we sometimes experience in this life. It’s a close, desperate lifeline thrown out to…

Toilet Training and Spina Bifida

Toilet Training, Bowel Programs and UTI’s are one of the most common topics at any Spina Bifida gathering.  Sit in the back of a Spina Bifida Teen Conference, next to the wheelchairs, and one will quickly figure out why.  The nerves that control the bowel and bladder exit the spinal cord at S2-S4.  Therefore, paralysis

Rethinking Denial

How a medical professional approaches a special needs parent makes or breaks the relationship. I think this article should be read by all medical professionals.  What the medical professional thinks about a family can impact the plan of care that is developed. Phrases like: Parent’s just spoil him/her, It is just behavior, and That parent is

Give me REAL DATA not miracle stories

I get so tired of people selling stuff by providing information about how the product helped one other person.  Or, by providing only part of the story. I have been a special needs parent for over 18 years, give me solid data; not some miracle about one person.  There are over a billion people in this

Spina Bifida – Walking by Age and Injury Level.

Last week I had the pleasure of attending a working about spina bifida and gait. The following is a table from that presentation which indicates the age at which a child with spina bifida started and stopped walking based on the research project being reviewed.   Thoracic High Lumbar L1-L2 Mid Lumbar L3 Low Lumbar L4-L5 Sacral

How to choose a wheelchair

A greats fitting wheelchair is essential. You know your kid, you know your body. Active participation and yes sometimes insurance appeals are needed to assure you get what you need.

I still remember getting Mel’s first chair.  Read about it here: https://transitionalmoment.wordpress.com/2012/11/30/mels-first-wheelchair/

 

Can my child get a job and keep or still get disability benefits?

Can a person, with a disability, work and still receive benefits? This is the question I have asked for a few month now. It seems it is possible. Yet, it seems only possible, if you understand all the complicated criteria and restrictions.  I recently contacted a local social worker for assistance and she sent me the following information.   Thanks

Drivers Education – Teaching Mel to Operate the Car

Teaching Mel to drive has been more of a challenge than I expected.  I do not know if it was because Coleman completed his training at a community facility and basically took care of all the requirements himself or I have a chip on my shoulder as I hate to be required to do anything