Transisiton
School districts need to offer more to support the families of their special education students
I used to work for an organization in the Mat-Su Valley that helped families deal with all the complexities of educating a child with special needs. Unfortunately that little agency, a homegrown non-profit with a lot of vision but little direction or leadership, really couldn’t sustain itself and I have moved on. But the need for families to have help and assistance has not…that is the sad thing. I continue to be contacted regularly by parents who are seeking information, resources, support and guidance. I wonder why this can’t be provided by the school district itself?
How great would it be if someone from your school district contacted you on a semi-regular basis to just check in? To ask what is working and what isn’t? To see what resources you might need or whether or not you need some support? I find that once our children are in their classrooms and we, their parents, aren’t making a fuss about one issue or another the District is more than happy to leave us alone. And yet, I’m not sure that is what we really want. I would love the opportunity to share my feedback, to ask questions in a forum less formal than that of an IEP, and to provide praise and as well as concerns.
I think our District needs a parent liaison. Not an advocate, but a liaison who shows the human side of the educational process. Who shows that the District cares about their students and their families. I believe most educators (teachers, administrators, support specialists) absolutely do care, but they simply do not have enough time to do any more than is required for their classrooms. It is simply too much to ask of them and the answer is not to add yet another task to their already overflowing plates. In the grand scheme of a school district budget, particularly for special education, this would not be a big expense and the reward for having families become a part of the process instead of feeling alone and frustrated would be immense.
If you know of a District that has a person or department who acts in this capacity, I would love to know more about it. I would love to know about the types of experiences others have had navigating the complicated waters of special education. Please share your experiences with all of us. I am hopeful to hear something, but an expecting silence, because I suspect most districts operate they same way ours does, which isn’t bad, but could always be better.
Expecting excellence from schools for our special needs children–an endless job for parent advocates
We are in day 4 of the new school year and Quincy’s move to high school has gone about as well as can be expected. Her high school is a very big place, with nearly 2400 students but built for roughly 1700. Even after being a high school teacher for 8 years, I would be lying if I didn’t admit that it’s a little intimidating being in the halls during passing. But kids are kids and, for the most part, everyone is respectful and nice. Long ago, as a teacher, I used to be mistaken for a student…I notice that doesn’t happen anymore. My years as a parent have left me with the start of some well-earned lines on my face that definitely tell the world I am no longer a kid.
I have been lucky enough to have Quincy’s aide from last year be with her this week to do training with her new team. This is working fairly well. Next week will be more stressful than this week because Q’s transition support network will be finished and she will be on her own with her new teacher and aides.
I miss the happy, fuzzy place that is elementary school. The high school intensive special needs classroom setting is pretty clinical. The other students in Q’s class appear to be more physically and medically fragile than her. This is a change for me. I am used to Quincy being the biggest challenge in the room and now I find her in a room full of kids with challenges even greater than hers. It’s probably good for her to be with classmates she can relate to but it makes the classroom seem more of a care facility than a learning environment. This is not meant to be critical of anyone, but an honest reflection on the difference from one program to another.
I hope over the course of the school year the room gets cheerier, brighter, noisier and full of a lot more laughter. Right now it is a rather serious, quiet space. But, again, this is only day 4 and people are still just settling in to their positions and getting organized.
To be honest, I don’t like sending Q to school much. I wish I were independently wealthy. I would bring specialists, therapists, artists and musicians to my home. I would have them spend one-on-one time making her day a rich, happy, enlightening experience. Maybe I should buy a Powerball ticket. Oh yeah…no lottery in Alaska. Darn!!! Guess I’d better just put on my parent advocate hat and keep pushing my local schools to expand their vision and strive for excellence with their special needs students.
The joy and stress of the first day of high school for my intensive special needs child
Monday will be Quincy’s first day of high school. I have spent an endless amount of time over the last six months preparing for this day. As I go over all my lists, it seems that I have everything ready. I have made multiple visits to the school last week, have meet every single person on Quincy’s team down to even the back-up substitute transportation personnel. I have taken down loads of supplies to her classroom. I don’t think there is anything left to do to prepare her for tomorrow. There is no question that this is going to be much more difficult for me than for her.
For the past eight years I have had all my children together in one school. Quincy has had the same team for years…people who know her as well as I do. It became more of a family than a school. This year I have Quincy starting high school, my son starting middle school and my youngest daughter still in elementary school. The comfort of having them all together is gone. The ease of one school, one schedule is gone. My life needs to be mapped out on an Excel spreadsheet to help me track three bus schedule, three lunch schedules, three schools with three distinctly different styles.
I will be burning up the road that runs between all three places. I will worry that my kids don’t have each other to care for. I will worry about being at the wrong place at the wrong time, the wrong place at the right time, the right place at the wrong time… My children are growing up and I couldn’t be prouder. But what I have found raising Quincy is that her getting older doesn’t equate to an easier life. In fact, things are much more complicated and difficult. Most parents enjoy this stage of life because as their children mature it affords them a freedom that they gave up raising babies and toddlers. The are delighted for their children to be old enough to fend for themselves, open lockers, buy lunch, even drive. High school is stressful for them in ways I will never understand, just as it is stressful for me in ways they will never understand.
I am hopeful for a relatively easy start. I hope that in a couple weeks we will have all fallen into a routine that is familiar. I hope that high school, middle school, and 3rd grade will be great adventures for my children. In the meantime, I hope that my hairdresser keeps plenty of my hair color handy to cover all the extra grey hairs that I am certain to sprout in the next couple weeks!
Taking time to thank those who have worked so hard with our disabled daughter
As my regular readers know we have kept Quincy with her elementary special education team much longer than normal. We started our experience with school slowly, initially taking her for short periods of time just to receive therapy services. It was scary for us to think about leaving her with strangers for six hours a day and we needed to ease our way into it. As it turned out the professionals at Larson Elementary have had an extraordinary impact on Quincy life and ours, in ways they probably will never fully understand.
It seems like just yesterday that I clutched my frail five-year old daughter and forced myself to walk into an unfamiliar school to begin the process of integrating her into public education. Quincy is now 14 and I am again facing the same fears as I lay the groundwork for her to start high school.
Yesterday my husband arranged to speak to the staff and faculty at Larson Elementary during their staff meeting to thank them, personally, for taking such wonderful care of our daughter. It was important for us to do this in a private, personal forum where we could take the time to individually recognize those teachers who have had an impact on us and the lives of each of our children. Teachers have a rather thankless job…they take a great deal of criticism and are rarely thanked for their efforts. Most teachers do their jobs because they love educating children. I know that because in a past lifetime I was a teacher and my husband still is. It is a difficult, complicated, rewarding profession and we believe it is important to express our sincere appreciation to everyone who opened their classrooms and their hearts to Quincy.
We purchased an apple tree as a gift to the school from Quincy. It’s delicate, pink blossoms are a perfect reminder to all of Quincy’s unique blend of beauty, fragility, and strength. I hope they plant the tree somewhere where it will thrive and grow and mature and serve as a reminder to those who work at Larson Elementary just how much they touched our lives.
Quincy’s journey through public education has not been without it’s ups and downs, but it is most marked by an impressive group of people who have spent countless hours celebrating her successes and helping us overcome any obstacles that we faced. I don’t want to sugarcoat our experience, because it has been a lot of work on our part as well as that of the District. And it has required constant advocacy and action. But right now is the time to acknowledge everyone who has done their part to make Quincy’s life a happy place. Battles and stresses and worries will always be around the corner, but this is a milestone in Quincy’s to share with so many wonderful people. This is a time to celebrate!
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…
Special education should be quality education!
Every day people bundle up their children and send them off to school. For the most part they trust that their children are getting an appropriate education. Although parents certainly have their issues…teachers they don’t like, curriculum they don’t understand, discipline they view as unfair…for the most part they know that every day their child will be taught and, hopefully, challenged. I would argue that in order for your child to get the best possible education you must be an active, engaged parent. But even if you chose to do almost nothing you could still expect your child will be given an opportunity to learn.
It’s unfortunate that this does not always ring true for children with special needs. For whatever reason most school districts struggle to provide the type of educational experience our children deserve. I have heard all the excuses….the main ones being budget issues and staffing shortages. I used to be more understanding and sympathetic but as Quincy gets older I am simply unwilling to accept these excuses.
We should be able to send our children to school and know they will be safe, they will be challenged and they will be treated with respect and dignity. We should not have to feel the need to check on them regularly. We should not have to take our time to educate the staff and administrators about our children’s needs. We should not worry about what our next battle will be. Our children should look forward to school as much as regular ed kids. Our children should have fun and feel safe and have their minds filled with new and wondrous experiences.
It’s unfortunate for us that Quincy doesn’t have a lot to look forward to when she starts high school next year. I am stressed about this….I am tired of fighting the system. I want to be able to enroll her in school and be excited about what is to come, but that just isn’t the case. Why can’t school districts do a better job with the resources that they have? Why do I still have to listen to the age-old excuses of lack of funding or qualified staff? What am I supposed to do when acceptable options just aren’t available?
Parents raising children with special needs have too many issues to deal with. After a while we get tired. It would be nice if just one thing in life could be easy and it makes sense that it should be school. But it’s not and it will take an enormous effort on my part to make sure that it is. Looks like I am going to be tired for a long, long time to come…
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.
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National Vaccine Information Center (NVIC)
