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The hardship and reward of vaccine safety advocacy

It takes me 12 hours of travel time to get to Washington DC and the same to get back home.  Twenty-four hours of travel to attend 12 hours of meetings.  Don’t get me wrong…it’s worth the effort.  There is simply nothing more powerful than a personal connection when you are working to make significant change on national vaccine policy.  To put a face to Quincy’s story and to engage in intelligent and productive discussions about vaccine safety is invaluable.  But, I liken the effort to childbirth.  Anyone who has had more than one child knows what I mean.  The only reason women go through childbirth more than once is because the joy of having children somehow miraculously replaces the reality of the pain of childbirth.  Basically, we forget…just long enough to find ourselves back in a situation we swore to anyone within earshot we would never, ever do again.  When I am in DC I have the opportunity to work with all kinds of amazing, influential people.  Attorneys who are preparing to argue before the Supreme Court, people who have advocated so effectively on behalf of those who have been injured that they have had movies made about them, Judges who make rulings than can change lives forever, scientists who science I find dubious but nonetheless must grudgingly respect for their own devotion to their side of this issue.  As I sit and talk and work with so many fascinating people I have these moments that seem surreal.  Seriously, I am a jeans and t-shirt soccer Mom from Wasilla who spends more time plowing my driveway with an ATV than I do riding the Metro or wearing a suit.  It’s funny to watch myself navigate this other world that is so distant from my reality.  I am like two completely different people and I know that my worlds will never, ever collide.  No one in my hometown or State really knows what I do and no one in DC will ever venture to Wasilla to see my life.  It’s a funny place to be, but one that I enjoy.  I am so humbled to have the chance to work on the issues that I so strongly believe in.  My input is listened to, considered and ever so often incorporated into the fabric of policy.  It makes what happened to Quincy have purpose…that her daily struggles are not in vain.  We are all handed challenges in life and it’s what we do with them that molds who we are.  I am so angry at what happened to Quincy, but I have to channel my anger into productive change to make sure this will never happen to another family, another child.  So, every few months I drag my butt onto those very long flights, ask my incredible husband to shoulder the ridiculous burden of handling the entire family on his own for a few days, and go back to fight the good fight.  There is not a shadow of a doubt in my mind that it is worth it.

School bus transportation for special needs students

I have had issues establishing Quincy’s bus transportation to school.  The District is now doing what they should do for her, which is to provided door-to-door transportation from our home to school, but believe me it was a major battle to accomplish this.  It was not a battle to have bus transportation included in her Individualized Education Plan (IEP)…that was easy.  It was a battle with the people who coordinate Transportation for the district to bring a bus up our driveway for Quincy’s pick-up.  We have a short, sloped driveway.  A small bus can back-up it without any trouble.  The problem is that the bus contractor only uses full-sized busses with wheelchair lifts.  They cannot bring a bus of that size up my driveway.  Thus, the stand-off began.  We live in Alaska where the weather is downright brutal during the school year.  The district Transportation people told me they would only pick up Quincy on the street at the end of our driveway.  Quincy cannot be exposed to a -25 wind chill sitting on the street waiting for a bus.  Nor is it even possible to push a wheelchair up or down an icy, snowy driveway.  However the school district Transportation people looked at my yard said they would not come up my driveway.  I told them she would not be picked up on the street.  Long story short…I won,  but it was bloody.  I won because there are always good-hearted people who work for any company that are as frustrated as any of us about bad business and injustice.  I won because an employee of the bus company called me, asked to remain anonymous, and told me that the contractor had at least three small, 4-wheel drive buses with lifts that they were using for other students.  I won because armed with that information I knew that the district Transportation people were not concerned about Quincy but about the aggravation of having to re-work their bus schedules.  I won because it is the law that the school district transport my daughter to school…in fact, the district receives a lot of federal money to do that.  If we refuse bus service you can bet the district won’t refuse these funds.  I hate using the term “I won” but I think anyone reading this that has had to deal with school districts and their children’s rights to an education would equate many of their struggles to a battle.  It was a battle because in order to get the district to do what the law required I had to pull strings, I had to get angry, my blood pressure went through the roof, I cried, I lost sleep.  It’s amazing to me that sometimes even people employed to care for our children are the ones who can be the most insensitive.  I have great respect for the district employees at Student Support Services who have really been committed to seeing that Quincy gets the education that she needs.  Among this department are some amazing, professional, and sensitive people.  Ironically, the folks who contract the bus service, as well as the bus drivers and their monitors have been really incredible people, too.  It just the middle-men, the folks who handle Transportation for the district, who could use some training on disability awareness, sensitivity and even Wright’s Law.  Maybe they should be required to read rubysoup every day.  But, I’m afraid if they read this posting I may not see another bus in my driveway for a month.  Oh well….

Support network for families of the developmentally disabled

Raising a child with disabilities can be an all-encompassing experience.  I’ve met more than one parent who has indicated what a lonely feeling it is to handle the responsibility of raising a disabled child.  Most of us put our heads down and just plow through life, protecting our children and fighting for their rights.  Conflict is a big part of our lives…we fight with insurance providers, schools, doctors, state agencies.  I suppose it’s not fair to make it sound as if every conflict is a battle, but if we don’t demand the support and services that our children deserve then it won’t happen.  It’s like insurance…we pay our premiums and submit our bills, but it is inevitable than when Quincy needs a new $5000 wheelchair I am going to spend plenty of time on the phone to be sure the claim is processed correctly.  Consequently, families feel alone and isolated.  And then one day you meet someone who has a child similar to your own and you realize your struggles are not unique.  The challenges you face are that same ones others are facing.  This is the beginning of the most important network you can build…the one with other families such as your own.    I have learned so much from my friends.  I have learned what teachers are the best, what equipment is available, what agencies to talk to, what doctors we trust and what meds our children are taking, where to buy ramp accessible vehicles, what fun activities are available for Quincy to be a part of, and even where to take vacations.  The wealth of information that we share among ourselves is impressive, but even more valuable is the support we lend.  We share thoughts and worries and disappointments that we never thought we would utter out loud.  We celebrate our children’s victories together.  Most of my friends and I loath the idea of “support groups”.  I know it’s unfair, but we see the classic support group as a place for people to go who have enough spare time to talk, talk, talk about their troubles.  Instead we offer each other more of a “get on with living” kind of support.  Sometimes these networks become organized in an effort to reach out to entire communities, mostly through non-profit agencies or faith-based services.  However, my personal experiences have taught me that despite their best intentions agencies often lose sight of their mission by placing too much focus on personal politics and their bottom line.  The networks that work best for me are those that I have formed on my own.  As I push the bounds of my comfort zone to reach out to those that I do not know, but who share similar struggles, I build my most powerful relationships.  I value my friends more than they know…I hope I give back to them half of what they give to me.

What school transition should mean

Yesterday we met with Quincy’s IEP team to discuss her transition from elementary school to high school.  This is a difficult process for children and their families because it means a whole new school, new staff, new schedule…this is scary for all children, but particularly scary for children who have developmental disabilities.  What I was struck by during our meeting, is how thefolks from the school administrations seemed interested in making the transition process smooth for their staff and for Rob and I.  Transistion should not be so much about making new staff members comfortable or even parents, as much as it should be about Quincy.  This is her experience and everything that can possibly be done to make her feel safe and comfortable is what the focus should be.  Don’t get me wrong, these are good people with good intentions.  But, they just don’t seem to “get it”…they just don’t seem to be able to wrap their brains around what should be done for Quincy.  Rob and I do our best to articulate this, but so often you feel as if the message is lost in a world of rules, regulations, goals and objectives, etc…  The first day of high school for Quincy should be exciting and new and safe and as stress-free as possible.  She should be familiar with the building, equipment and adaptive supplies should be available and ready for her to use, there should be trained staff to greet her who know who she is and what she can and cannot do.  I do not expect this to be a stress-free experience, but it should be one that at least provides her a feeling of safety and security as she learns to adapt to a new environment with new people.  Transition is not about my comfort…I am never comfortable trusting Quincy’s care to other people, no matter how well-qualified they may be.  Parent’s raising children who are fully dependent on others for all their needs will never be comfortable sharing that responsibility with anyone else.  What we need is for our children to be comfortable with other’s doing their care-giving.  That is a very, very big difference and one that teachers and administrators should do a better job of trying to understand.

Tags: Special education, transition

Special education and parent advocacy

One of the most challenging issues we face raising a child with both cognitive and physical disabilities is school. Quincy attends the same public school that her brother and sister go to. That was important to us and an issue that we had to fight for…the opportunity for her to attend her home school with her siblings and the neighborhood kids.  This gets down to the essence of rights for special needs children…the right to the same education all other children enjoy.  And that means not busing them to sites set up specifically for intensive needs kids, but instead establishing intensive needs programs within their home schools.  But, this is just the tip of the iceberg.  When you allow a child like Quincy to be in the care of other people for six hours a day you must have a great deal of trust and respect for those who are caring for her.  Quincy cannot talk or tell me when she has been mistreated or scared or frustrated.  So the people, the teachers, aides and therapists, who work with her daily must learn how to communicate with her and respond to her cues.  This takes an incredible dedication of time and resources for training and education, and this is not something you find in public education.  So, we have done a huge amount of work on our own, developing lasting relationships with the people who work with Quincy.  We have developed an IEP team that is first loyal to Quincy’s needs and not so much the needs of the school district.  This has been tremendous  for Quincy, but isn’t always a smooth task.  However, Quincy is the first student in our district to remain in elementary school until she is ready to transition directly to high school next year, in effect skipping middle school.  The purpose of this was to allow her to remain with the same team as long as possible so she can have the maximum benefit of their expertise and to reduce the incredible stress that comes from transitioning to a new staff and building by simply eliminating the transition to middle school.  This works for Quincy because her academic gains are measured in very small increments and most of her time at school is with adults and therapists.  This should make the social transition from elementary school to high school fairly smooth.  For children who function at a higher level, this may not be the best choice.   There are social aspects of middle school that are important for adolescents to be exposed to and it may be awkward and inappropriate for most students to simply skip this important stage of life.  The main point is that we were able to mold Quincy’s school experience to what is best for her, not what is easiest or most economical for the school district which is all to often the way decisions get made.  Credit must be given to the leadership at our district for looking at new and innovative ways to educate and to be willing to listen and incorporate parent input into this process.  Parents must always advocate for the rights of their children, however stressful and time-consuming it may be.  No one is going to  fight for Quincy except her Dad and I…that’s just another reality of this life we lead.

Tags: IEP, intensive needs education, School, transition