Saturday, July 5, 2008

Advocacy 101

Ah what we, parents of disabled children, could teach lawyers about this topic. Here’s what I’ve learned.
1. Be passionate about what you are trying to do. Always stick up for your child.
2. Persevere at all costs.
3. Insist on being present in all dialogues that will result in a change or addition to your child’s support.
4. Participate in these dialogues no matter how scared and upset you are.
5. Investigate and research your child’s rights in the situation
6. Know exactly what the discussion is about and know what you are prepared to accept.
7. Have a strategy and be spontaneous
8. Always be polite, calm and cool no matter what you feel inside.
9. Have an ally and when possible be prepared to add a dash of humor. Laughter is very important because only a healthy, positive and humane person will laugh with you. You need people like this in your life to get done what needs to get done.
Sometimes it reminds people they ARE human.

In this example I'll refere back to these points.
My ally, my child’s teacher, got wind of a meeting the school board and school were having to discuss my sons future form of school transportation (#9). He was moving up to Middle School and they were going to insist on using public transportation. I was horrified at how ludicrous this was.
I contacted the school and calmly asked to be included in this dialogue (#3, #8).
I nervously sat down to the table and wondered if all lawyers feel this way before going to court with a new case (#2). I next asked the board if they would please share their plans for my child’s future (#3).
They wanted my child to take a city bus, loaded with strangers (my internal side comment), to and from school every day. I politely listened while they explained their decision based on budgets.
I sat and waited till the Superintendent of Transportation looked at me questioningly and asked if I cared to comment.
I loved my child’s teacher. She was SO good at following my cue. Imagine two little old ladies having tea together and discussion something they thought was important but had a humorous side to it (#9). As we chatted, the rest of the group melted away. We had a jolly time. (#7)
I turned to face my ally.
“Bev can you just imagine? This whole idea is based on the premise that I can even GET him on the bus!” I started with my eyes sparkling (#5, #9).
My ally nodded with a smile, “Oh yes! Even if you can GET him on the bus.”
“After a lot of coaxing, he boards the bus.” The sparkle in my eyes moved to my mouth. “And THEN – poof - he spies something out the window, rings the bell and gets off the bus to check it out. By this time my speech is interspersed with a few giggles. (#9)
“Oh yes I can see him doing that. And then how will we know where he got off?” she bursts out with a giggle. And the story grew from there.
Finally I paused and took a deep breath. I turned to the Superintendent, the laughter gone from my face and voice, and asked (#1), “How long would it be before you noticed he never made it to school? Where would you even begin to look for him? What on earth would you tell me?” I then deepened my voice to pretend it was him, “Uhm, Mam, I’ve called to tell you we seem to have lost your son.” (#5)
He had taken a breath to speak and I put up my hand to stop him.
“Can you imagine the legal issues you would find yourself in and just how much it would cost?” (#5, #6) I paused and looked each person in the eyes.
The whole group sat dumbfounded by the turn the conversation had taken.
With the breath he had been holding, the Superintendent looked at me in a resigned manner and mumbled back, “ Uhm, Mam. You’ve made your point quite clearly. I guess he’s not ready for this.”
Shortest, successful meeting, I’ve ever attended.

Friday, July 4, 2008

No Such Thing as Normal

The whole concept of what is “normal” shifted dramatically when I discovered I was the parent of a child with a disability. I touched on it briefly before. It’s all a matter of perception and if what I experience has always been that way for me then it is “normal” for me. So when someone finally asked me how I coped it caught me by surprise.
When I stumbled into the arena of “parenting a disabled child” the word normal was the most infuriating word I ever experienced. It led to anger, resentment and pain. What a nasty group of feelings I had to deal with when my focus should’ve been on my child. The word normal had everything to do with MY world being turned upside down. It was the most selfish word I could’ve attached to myself. It was also the most destructive.
At first it sent me into a tailspin of depression. Then I guess I went through all the stages of grief. What got me out of this cycle was the fact that this was not a life sentence for me. It was a diagnosis for my child. This was not about me. This was all about how my child’s life and future were going to turn out.
So when you believe the word normal exists it means that you have the unending job of comparing yourself to every other family you ever come in contact with. It means constantly coming up with excuses for why you do what you do and why your child will never be like other children. It means you are never good enough and failed as a parent. It means that every time you come to a roadblock it is painful part of the journey.
What I found out is that there is no such word as “normal” only the following words: acceptance, learning, changing, adaptation, growth and progress.
Instead of an unending job of dealing with problems it became a belief of “How do I accept this gracefully”. It meant accept what needs to be done and deal with it because it is just a part of life. Instead of an endless experience of yet another thing to deal with it became an opportunity to learn something new, an exciting challenge and yes even an adventure. When I felt overwhelmed by yet another glitch in the journey of my life I reminded myself that here was a change to adapt and grow.
What also became apparent was that despite all the times it FELT like I was moving backwards there really was progress happening and that is where support comes in handy.
The first thing I did was look on the internet for a group who had a child with the same disability and I signed myself up. What I found in this group was not just an ordinary support group. I found a whole group of parents on the same journey as me, disabled as me and willing to learn as me. I found that it was my cheerleading squad when something good happened, my shoulder to cry on when something bad happened and a storehouse of suggestions when what I tried to do didn’t work.
So what is normal? Well like I said, there is no such word.

Wednesday, July 2, 2008

A Gift From God

Like a lot of parents who have a child with a disability, I belong to a support group. In this group, we all have a child with the same disability. Like a lot of parents who have a child with a disability, I belong to a support group. In this group, all the parents have a child with the same disability. Sometimes the support group touches on this subject of how the parents can accept this situation they find themselves in. Members often remind everyone that the reason we have our child is because it is a gift from God. Yes, this child is in our lives because God knew unequivocally, we were the only one capable of handling this child’s life. This belief starts as only an affirmation but it does move most of us forward.
I think it takes us through the first stages of our realization of the work we have cut out for us. It heads us in the direction of the first stage of our recovery from this disability: acceptance.But is this enough? I don't think so. There are millions of little steps involved. I firmly believe that if we smack ourselves down on the sidewalk and feel overwhelmed at the task before us it means we gave up.Is this disability, as a parent, genetically or biologically inherited. Of course not but it IS spiritually inherited if we believe that God chose US to raise this child. I believe God knew we could overcome our own disability.
What made me reach the second step? It was a sharp reality check. Someone once asked me how I had managed, all these years, to raise my child and take care of the rest of my family. My eyes widened and I was startled by the question. It had never occured to me to think of this task in that way.All I could say was, my child, was my child. He had always been this way. It was not like all of a sudden we had a maze of things to learn and do to meet my child’s needs.My child has never known any difference and neither has anyone in our family. With each step of the journey, if a new road block was encountered, it was either attacked and resolved or gently nudged into alignment of what we thought would work. So what became a reality to me was this: this wasn't some new, over-the-top, insurmountable problem every day of my life. The reality was we took each day in our stride. If something needs to be adjusted we did it. If steps needed to be taken they were taken. If I needed to advocate for my child to another group, organization or agency, it was done. Simple as that.
It wasn't always that easy but God didn't drop a HUGE problem in my lap all at once. God eased me into the job gently. I just never asked what the job description was.

Tuesday, July 1, 2008

Confessions of a "Handicapped" Parent

It came to me in a flash! I was trying to think of a name for this blog. I wanted it to be for parents of disabled children and I wanted it to be short. If I just said "handicapped parents", then someone might think it was for a parent with a disability.
Then it dawned on me... okay it hit me like a hammer. This blog was never about my own child, who is disabled. This blog and story has always been about me. It was ME who was truly disabled and my stories are a journey of how I learned to cope with, deal with, grow and cure myself of this disability.
Children who are developmentally or physically disabled instinctivley and inherently KNOW what they are capable of. It us, the parents, not our children who have the disability.
As parents, we have been bombarded all our life about what a parent is and should be. There is the media, our parents and mentors and role models all throwing images and ideas on how to parent but NO ONE ever tells you how to be a parent to a child with a disability.
When our child is born we too are born. We are born blind to what we can do, say or be. We are blind to what our child is capable of.
We are deaf to our own inspiration and we are emotionally crippled by our constant questioning of: why me?
We are also born again mute. We speak about what we need and what our child needs and often the people and organizations around us cannot hear us.
We are paralyzed with anger and resentment because no one understands what it is like and we often become exhausted trying to make a case to people who can help us.
This this blog is not about your child or mine. There are millions of disabilities and diagnostic categories our children will fit into. But there is only one place for a parent who's child is born with or a child who develops a medical issue. This blog is for you.
This blog is all about offering a course of action, through sharing about the journey to recover from my "birth" as disabled parent to an adapted parent.