transition
The transition to high school…continuing the process.
The weather has turned warm and sunny, the snow has melted, and the sounds of spring are all around us. This also marks the last couple weeks of the school for the kids in the Mat-Su Borough School District. They finish up on May 22, so we are in full swing with end of the year activities. And this includes putting together the pieces of Quincy’s transition to high school for next year.
This is still an emotionally difficult process, but Rob and I trudge through it with as much optimism as we can muster. After all, this is a very exciting time for Quincy. Remember when you were facing your freshman year in high school? This is a very big deal. But, for her parents it is tough. It is tough to know we will be turning her over to a whole new team, new teacher, new support staff, new everything.
The District is doing a pretty good job of easing into the process. I have met Quincy’s teacher and she has been able to spend a couple days observing Quincy’s current team and classroom environment. That is valuable time, as she is able to see for herself what kind of care Quincy requires. Tomorrow a support staff person who will be working with Quincy next year will begin her first of several (I hope) observations as well. It’s difficult to do too much cross-training at the end of the year because teachers and support staff really don’t commit to where they will be working often until late summer. So, it’s pretty extraordinary for us to have these two folks already putting time in getting to know Quincy.
Next week I will meet the principal of Quincy’s new school and discuss our goals and expectations. Again, it’s positive to see so many people take the time to get to know Quincy and her needs as well as helping us get comfortable with her new program. I am grateful to the District for working so hard to make this the smoothest possible experience for Quincy.
And, really, that is what it should be about. It’s not about making the parents feel better, it’s not about making the staff’s life easier, it’s not about other students…it’s about what is best for Quincy. Sometimes it’s easy to lose that focus…the child’s needs get lost among everyone else’s needs. But I think we are doing a good job of keeping everyone centered on Q.
So, that’s my transition update for now. I am pleased with the progress so far. We will be able to take advantage of summer session to do continued training. I am hopeful that next August brings an easy start to a new program…and that Quincy’s only worry is what to wear on the first day of school.
Why does “advocacy” feel like a polite word for “fight”?
It occurred to me this morning, on the heels of yet another issue with Quincy’s bus transportation, that being an advocate is really nothing more than being a warrior for my daughter. Problem is, it is tiring being a warrior all the time. Parents raising kids with disabilities will tell you that if you simply trust the systems to do what is best for your child, the system will inevitably fail you. I have yet to encounter a system, be it transportation, education, insurance, medical, etc… that has done the right thing for my daughter unless they were pushed to do so.
This is not to say that there aren’t good individuals within these systems that make every effort to do what is right. In fact, if it weren’t for these people, who work within and know what should be done, then my fights would be much more difficult. For effective advocacy you first have to find these people, build relationships with them, do all you can to show them you are smart and reasonable and not a crazy lunatic, and then assess when it is appropriate to seek their help and when it isn’t. If you complain too much or too often that diminishes your credibility. But, if you are too quiet and don’t speak up enough, you are labeled a pushover. You have to find the line and walk it carefully.
But, this is not a post about how to be a good advocate, but more a rant about why my life has to be so much about advocacy, or polite fighting. I don’t want to fight for proper transportation, I don’t want to fight for an appropriate transition to high school, I don’t want to fight the federal government to stop making vaccines that cause horrific collateral damage to innocent children, I don’t want to fight my insurance company to pay for durable medical equipment. I don’t want to fight at all. I want to watch my children grow and learn and be challenged. I want the world to be a safe place. I want people to respect the needs and rights of those who need help.
If I give up the fight (which I am very, very good at) then there is one less voice out there standing up for those who can’t stand up for themselves. I am not an advocate by choice, but by necessity. I did not ask for this job, it was thrust upon me when Quincy took the fall so other children could be protected from pertussis. Today, I resent my role. Tomorrow, maybe not. One thing is for sure, whether I like it or not, I will never stop fighting for my daughter. I can only hope that the battles that I win today will make the world a better place for others tomorrow.
The challenge of transition to high school for a developmentally disabled student
One of the things that I have been working on this week is developing a transition plan that the school district will implement to prepare Quincy and her new school for next year. This is such a difficult and emotional task. It takes an enormous amount of effort to train teachers and staff about Quincy, about what she needs, how to care for her, how to communicate with her… We have such an amazing team in place at her current school…really caring professionals who know her almost as well as her Dad and I and who take a personal interest in her care and education. It’s a truly daunting concept to think that next year she will start all over with a whole new team.
How do you prepare a child like Quincy for this and how do you prepare a team for her? Because of the way our school district operates, there is a lot we simply cannot do. The District is unable to commit to staffing decisions until as late as August, so the opportunity to cross-train teachers and paraprofessionals is lost. This is one of the biggest frustrations families face. If people could spend the time now learning about Quincy and observing her educational environment then just think of how better prepared everyone would be next August. But, it can’t happen in the Mat-Su School District so it’s just something to let go of.
Luckily most of the resource specialists, like PT’s, OT’s, Speech Therapists, Vision Therapists, Assistive Technology aides can be trained ahead of time, and this helps a great deal. In fact for a child with limited abilities, like Quincy, the therapists usually become the folks who do a great deal of training with teachers and aides. They are the professionals who know best how to work with Quincy and are the most effective trainers. So, that process of cross-training with therapists will hopefully start soon.
Making sure the facility is prepared for Quincy is another thing we can expect. Quincy needs a lot of special equipment, things like mat tables, changing tables, standers, Hoyer lifts, etc… The District can make sure this equipment is physically present at the new school at the start of the year and that the staff knows how to use it. They can also make sure things such as a private area for changing diapers and an adequate place for feeding her can be ready. I know this seems obvious, but you’d be surprised at how many times the school year begins and the most basic supports are simply not in place.
Death, taxes and transition…that’s about how I look at this. It’s incredibly stressful to start over with new people in a new building. But, it should be exciting and fun for Quincy, just as it would be for any high school freshman. The challenge for her Dad and I is to hide our stress from her, do all the legwork to make sure the start of they year goes smoothly and share in her excitement. Only time will tell how well we are able to actually do that…
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.
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.
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National Vaccine Information Center (NVIC)
