“What do you mean you don’t have an ‘appropriate’ kindergarten for Sean?” I asked.
I knew this day was coming and knew it was a distinct possibility that our school district would be ill-prepared for finding a suitable classroom for my son. But I wasn’t prepared for them to state it so emphatically and on our first discussion about his primary school placement.
We had watched Sean behave differently in his two preschool environments. On days he was at Easter Seals he would interact with his teachers, therapists and peers, but on days he went to our community based preschool, he thrived. He would hold his head up when in his stander as his peers wheeled him around the gym. He would use his gait trainer to ‘walk’ toward his friends. He would lift his head and engage in eye contact. Why wouldn’t we want him placed in an inclusive environment as he began Kindergarten?
Having two older children who had gone to our local public school, we knew the building was not equipped to handle Sean. With three years of volunteering in classrooms, I knew the challenges of navigating Sean’s wheelchair through the bi-level building. But if this building was not appropriate, certainly there was another elementary building in the district that would meet Sean’s needs?
The Director for Special Education offered a tour of the only single floor building. She guided us to the one classroom that was the ‘best’ option. As an all autism room, it hardly seemed an appropriate fit for a child with significant motor impairment and cognitive delay. Then came the moment when the Director laid it on the line. Sean has significant needs, and while the district may be able to meet his IEP requirements, we really need to ask ourselves if this was in Sean’s best interest.
As advocates for inclusion, my husband and I really struggled with the reality of not finding a way to integrate Sean into our public school. Isn’t this what we had worked so hard for? Hadn’t we laid the foundation for this by carrying him down those steep steps to the preschool in the church basement?
We reluctantly agreed to visit other schools. We had heard of a school that specialized in children like Sean, children who had significant motor involvement that impaired their progress. Children who may not be cognitively age appropriate, but who have the capacity to take advantage of the multiple technological resources to facilitate their mobility and communication. This school was HMS.
Our Early Intervention teacher had given us a heads up. This was not a school with the newest facilities. This was not a school that uses inclusion as a basis for learning. Rather, HMS was a school that handles the most severe, often medically fragile children and helps them build communication so they can interact in their world.
OK, we promised, we’d keep an open mind when we visit. And while my husband and I didn’t discuss it at the time, I’m certain each of us were holding out hope that neighboring school district we would tour the following week would have an appropriate classroom for Sean.
We pulled up to HMS and learned the true meaning for the acronym. “Home of the Merciful Saviour for the Crippled Children” we read. Granted the name dates to 1882 when the school was founded, but it’s amazing we didn’t pull out of the parking lot right then and there. Thank goodness we didn’t.
Entering the old stone building, we were quickly ensconced in a sea of children and young adults with obvious severe disabilities. Literally every student we saw used a wheelchair. Most were non-verbal. Most wore leg braces, body jackets, hand splints or all.
And then we looked closer. Many of these children were facilitating their own mobility. Many were communicating with the use of some type of voice output device. And all were accompanied by a therapist, teacher or staff person who was treating them with respect and dignity.
Touring the old building we looked at each other in amazement again and again. How is it possible a school with such excellent credentials in serving this distinct population have such an aging facility? To get to the room that housed the youngest students we had to pass through a narrow, sloped hallway. But when we got there, what we saw was remarkable. Here were children just a year or two older than Sean using technology, enjoying their peers and clearly loved by their teacher.
The School Director challenged us to see things a new way. We had talked so much of the inclusive environment we created for Sean in our community. Did Sean ever show signs of frustration in not being able to keep up with his peers? Do we provide other opportunities for peer interaction other than school based? How has Sean reacted to similarly-abled peers?
I’m pretty sure my husband and I sat there with our mouths agape.
Of course Sean showed signs of frustration. It has to be tough for him to consistently watch his friends run off and him not be able to keep up. And while the kids had been great in wheeling him around in his stander, no one could expect a 5 year old to always remember to include Sean.
Of course we provided other means of community interaction. We had always approached life with Sean as we did with our older two children. We did most things together as a family. Sean had third child syndrome. Wherever the older two children went, he went. Not because he wanted to, but because he had no choice. Soccer games, swim meets, gymnastics practices, Irish dance lessons; you name it, Sean was there. And when Sean reached the age to participate, he joined these activities too. He played T-ball and soccer, not in the ‘special’ league, but in the league with his friends from pre-school.
“So it sounds like he gets a fair amount of community interaction through his extracurricular activities.” Observed the school director.
Now we were starting to catch on.
So what, exactly, does HMS offer?
A comprehensive approach to educating, nurturing and caring for the whole child. We were so used to assembling a team of therapists, nurses and aides piecemeal that a comprehensive approach sounded lovely. We had been very fortunate in finding appropriate therapists to work with Sean during his Early Intervention and pre-school experiences. But as he transitioned to school based program, the match of Sean’s needs and therapists’ skills and experienced seemed less certain.
At HMS we would be getting therapists who truly understand the needs of someone like Sean. A Speech Therapist who deals with assistive communication technology all day long, not someone who works with a child on articulation issues most of the day. A Physical Therapist with years of experience in wheelchair fittings, adapted bicycles, and gait trainers, not just stretching hamstrings. An Occupational Therapist who prioritizes skills based on using technology to help facilitate growth and development, not just fitting for hand splints because he’s the right age. A Feeding Therapist who was skilled in feeding techniques, ensuring Sean’s safety as he advanced textures. This would be a very welcome addition, as we had spent the last several months driving to Sean’s school to give him lunch.
You could have knocked me over when I learned about the nursing program provided at the school. You mean I could send in Sean’s mid-day meds and have someone at school administer them?
Not only was Sean going to get appropriate, excellent care; my husband and I were seeing the opportunity to transition from scheduling our lives around Sean’s schedule to finding a schedule that works for all.
As we continued to tour the school, we learned more about the staff. With more staff than students and average staff tenure of nearly 20 years, it was clear this was a group of individuals committed to their student population. Sean wouldn’t just have an Educator, Physical Therapist, Speech Therapist, Occupational Therapist and Feeding Therapist as required by his IEP; his team expanded to include an Assistant Teacher, Recreation Therapist, Music Therapist, Art Instructor, Nurse, Certified Nursing Assistants and Social Services Support. The goal of nurturing the whole child was clearly being met.
It’s likely the hardest part about making the decision to send Sean to HMS had more to do with our fears about Sean’s future than any element directly related to the school. When Sean was first born, we knew he had challenges but didn’t realize how severe they were. As is the case with most brain injuries, we don’t know how the impairment will manifest and the extent to which the injury will inhibit growth. As Sean grew and more milestones were not met, it became increasingly clear that his challenges were significant. This was not something easy to accept, and there were several markers along the way. Ordering his first wheelchair was an emotional time, one that his Physical Therapist had prepared us for that many parents find trying.
The decision to send Sean to a ‘special’ school was another acknowledgement on our part that Sean was ‘different’. And while many around us recognized this, as parents, we’re often the last to know. Of course we ‘know’, but there is a vast difference between knowing and accepting.
I’ve come to learn that accepting Sean’s disability is a blessing, not an act of ‘giving up’. In sending him to HMS, I’m celebrating the uniquely wonderful individual he is and has the potential to become. I’m providing him an educational environment where he can thrive. And importantly, I’m accepting Sean for who he is, not who I wish he were.
It’s been four years now that Sean has been at HMS. The school has recently undergone significant renovations. The residential facility has been expanded to accommodate more students in a facility appropriate for this complex, medically involved population.
The cornerstone engraved with “Home of the Merciful Savior of the Crippled Children’ no longer lays on the front of the school, and of this, I have mixed feelings. I’m grateful we as a society have come so far to not let words like ‘crippled’ define our children. And for parents of prospective students, I’m grateful they don’t have to encounter their own insecurities, doubts and fears when they first tour the school. But I also know that if these words hadn’t smacked me in the face when I first visited, I never would have experienced the growth I have. Sometimes it takes more than a little nudge to face us in the right direction.
Reprinted from Exceptional Parent, March 2009