NOT JUST A GREAT "IDEA" BUT THE LAW OF THE LAND

There have been several pieces of legislation passed since 1973 guaranteeing the education rights of children with special needs.  First, there was important legislation passed in 1973 called the Rehabilitation Act, giving students with special needs and disabilities free and equal access to public school education. In 1975, the IDEA Act which was formally the federal  Education for All Handicapped Children Act or (EHA)  passed requiring all public schools to evaluate handicapped children and create an educational plan with parent input that would emulate as closely as possible the educational experience of non-disabled students.


Since it is the responsibility of each state to uphold the federal law, each state passes their own legislation outlining how they are going to guarantee, protect, and safeguard the education rights of each child with special needs.   Remember, before you head into that initial special education  planning meeting with your school district,  take a look at these protections and safeguards that were created for all our families and friends of children with special needs.

The Cradle Will Fall - Transitions Online

This story is heartbreaking to read. 


We need to give our parents real tools so they can be the parents they were meant to be regardless how a baby comes into the world. We need to continue educating our legislators and representatives that a humane society is what we should all be working towards. We need to create a society that truly values all aspects and responsibilities of parenthood. With in the increasing numbers in children testing for ASD and other issues that impede or delay their development, we need to increase funding as well.

We need to tell our stories to the legislators, governors, and local representatives who do not see that the growth in disabilities and delays go hand in hand with a growth in funding.  We need to write directly to them, telling the stories about our children who are advocating for self determination and the stories about advocating for children who cannot self-determine their life.

Survival of the Fittest

I always tell people our survival  is a miracle.  Different things happen to everyone every day but somehow we manage because all those prayers that are said on our behalf go into this big well where we go to get revived, rejuvenated, and restored.  Some of us even get re-booted.  Or at least some of us.

It's easy to demonize Jillian McCabe rather than accept that we have a crisis in this country for people  going without ongoing mental health support services, not only when they hear the diagnosis of MS, cancer, autism, or brain damage, but when they try to live with it everyday.  She already had a track record for mental illness and depression so she needed full-blown support.  Support to  take on her journey.   Support that will maintain a  job, pay  medical bills, and still provide for quality and purposeful life for children.

This business of raising kids with special needs, the kids that require 24 hour care, isn't for everyone which is why we can't gloss over the messy business of caregiving. We have to be really honest about our reality raising our children  which is why I suppose people terminate pregnancies when they are told about issues with the ultrasounds and genetic tests.  Maybe they see what we're not seeing.


I think it's even more difficult for parents when they find out after the child is born and missing milestones.  When the diagnosis and prognosis drops like a piano into pieces from the ceiling into their living room.  What kind of mental health support services are they given today?  What kind of hope are they given?  Maybe our beautiful little boy London would be alive today if  his mother received early infant to childhood intervention, parent education, therapy, and other support services for her journey while she was on her way to the well. That well where all the prayers go that are said on behalf of our children.

Getting Back to Feeling Normal...

We’re between a rock and hard spot all the time, aren't we? Always  looking for that place to feel normal again.   Whatever that is.

This past weekend driving out-of-town for a school competition, I swore that it would be the very last car ride with my daughter, now 20 years old, because her “discomfort” level is just unbearable  to human ears and because it’s dangerous to take her out of the seat belts to comfort her. I say this every time we get into the car for trips longer than 20 minutes.  I say the same things over in my head. Why do I subject her to this if she doesn't like driving in the car?  She's not in pain and we tried prescription medicine.  Nothing works. We figured out she's just not comfortable in the car without her wheelchair.  She can be on a school bus for hours and not complain. 

She can be happy and smiling and even laughing. We can be listening to an audio book or singing along to song having a great time in the car.  We can be quietly riding to our destination.  Then suddenly, out of the blue, I see that expression change to a grimace and we know what comes next.  And for the next 15 to 20 minutes off and on throughout the duration of our travels, we shuffle around the mini-van playing musical chairs, musical drinks, musical food, and  musical toys trying to find a way to make her more comfortable.  We wrestle with her spasticity  trying to make her comfortable. We wrestle with our conscious.  We wrestle with our roles as her caregiver and parents. We wrestle between the pain and comfort.

By the time I arrive at my destination, wherever it is, I really don't feel like talking to anyone. Even if the ride is out to visit a family member for a pleasant holiday, it takes me a long time to "assimilate."  It's difficult to shift  from “that mood” of feeling so inadequate as a mother  to being in "that mood" where I am genuinely interested in what other people are doing. There was a time I remember being genuinely interested in what other people are doing, but sometimes I feel like zombie mom. 

Sometimes I am thankful for our "sanctuary.  You know that place? That place that separates us from the rest of the world in stadiums, movie theaters, and restaurants. The designated Wheelchair Area where we park and just be who we are -- a family. I leave my worries there, thankful  that Elisabeth and I have a place to let go of the tension and anxiety from the drive. A place where I can just be with her without trying to figure out  how to make her comfortable.

One time, a friend from church saw us at the baseball game sitting in the "wheelchair deck" and came over asking if they could take Elisabeth "for a walk" around the stadium so I could get  a break.  Then, they came back with a glass of wine!  Snap! I was back to feeling normal!   Whatever that is!

If people think I am being rude for not talking to them when I first arrive,  I apologize.  But, I hate apologizing because  I never know what to say. I'm sorry? I'm sorry I can't be in a better mood because I just spent the last 3 hours trying to make my daughter more comfortable traveling?  I don't want to share with others  the level of stress or anxiety that goes on when I'm trying to make her comfortable.  And I'm sure she doesn't want to hear it either.  I tend to carry way too much emotional luggage as it is being her caregiver, I don't want a guilt trip.  I don't want to hear what an inspiration I am or how tough it must be.  I don't want sympathy.  I don't want to wear my daughter's disability label and neither does she.

We just want to get back to "normal."   Whatever that is.