The Misunderstood Child: A Poem About Children With Hidden Disabilities

I am posting this poem by Kathy Winters since October is National Sensory Awareness Month and I have two handsome little boys in my life with “hidden disabilities” and a number of family friends who have children with sensory issues … Continue reading

Where Are The Parents? {A Lesson On Not Judging Other Moms & Dads}

{This is a beautifully written post by a mom that was raising a child who was disabled. It had me in tears so I wanted to share it with you all. Reminds us to never judge other parents because we don’t know their situation and what they go through on a daily basis.}

Where Are The Parents? By Sue Stuyvesant, Parent

Hey everyone. For those of you who don’t know me (I’m only an occasional poster) I am mom to Michelle, 9 years old, microcephalic, athetoid/spastic CP, cortical visual impairment, seizure disorder — and CUTE! OK, now for the reason I’m posting.

To make a long story short, earlier this week a question was asked by some nitwit official as to why there weren’t more parents (of special needs kids) involved in the local PTA and other issues that have come up that directly involve our kids. His question, which was passed on to me was, “Where are the parents?” I went home that night, started thinking – and boy was I pi**ed – and banged this “little” essay out the next day on my lunch break. By the way, I took copies of this to the school board meeting that night, gave it to a couple of influential people and it WILL get around………….

Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed. They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their 100 lb. daughter onto the toilet. They are spending an hour at each meal to feed a child who cannot chew, or laboriously and carefully feeding their child through a g-tube. They are administering medications, changing catheters and switching oxygen tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms, waiting for tests results to come back and wondering, “Is this the time when my child doesn’t pull through?” They are sitting patiently in hospital rooms as their child recovers from yet another surgery to lengthen hamstrings or straighten backs or repair a faulty internal organ. They are waiting in long lines in county clinics because no insurance company will touch their child.

Where are the parents?

They are sleeping in shifts because their child won’t sleep more than 2 or 3 hours a night, and must constantly be watched, lest he do himself, or another member of the family, harm. They are sitting at home with their child because family and friends are either too intimidated or too unwilling to help with child care and the state agencies that are designed to help are suffering cut backs of their own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try to make up for the extra time and effort that is critical to keeping their disabled child alive. They are struggling to keep a marriage together, because adversity does not always bring you closer. They are working 2 and sometime 3 jobs in order to keep up with the extra expenses. And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping those in need, as long as it doesn’t cost them anything. They are trying to patch their broken dreams together so that they might have some sort of normal life for their children and their families.

They are busy, trying to survive.

***

Sue Stuyvesant 10/15/96: Permission to duplicate or distribute this document is granted with the provision that the document remains intact. [Sue passed away in October 2003. Michelle passed away a week before she was to turn 18 in September 2005].

Special Needs Moms {A Look Inside}

My cousin posted this on Facebook. I’m not sure of it’s origins but I just had to share :)

What Ryan Gosling Might Say About Special Needs Parenting

I could look at Ryan Gosling all. day. long. When I came upon this “Special Needs Ryan Gosling” meme over at Adventures In Extreme Parenting I had to share it. Click on the button below to be taken to all the fun :)

{You can also join in if you want! She posts new ones weekly and adds a linky at the bottom of the posts.}

Cyber Monday Deal: 40% Off Soft Clothing {Perfect For Children With Sensory Issues}

{Thought I’d share this for all the parents of children who have sensory issues, like mine do} HAPPY CYBER MONDAY! Soft Clothing is having an incredible sale event on their website: 40% off storewide until MIDNIGHT tonight! Use code at … Continue reading