Instead of feeling sorry for ourselves, we focused, and still continue to focus, on each issue or obstacle as it arises and John's needs in order to grow and develop. For example, John began physical and occupational therapy treatments as early as two weeks old while still in the NICU, at which time he was fitted for braces to correct the contractures of his hands and feet. John wore those braces for 9 months straight and now has full use of his hands and feet, despite that initially John was unable to open his hands or extend his feet. From that point forward, we knew there was no limit to what John could attain.
We immediately enrolled John in early intervention services the day John came home for the first time. In addition, we attended many physical and occupational therapy sessions at Childlren's Hospital Boston, in addition, to the services provided by early intervention, as we wanted to push John to his utmost potential. With these therapy services, John really progressed in the area of gross motor, although he continues to be extremely developmentally delayed both physically and cognitively. John did not hold his head up completely independently until the age of about 10 months. At that point, he could hold it up, but it was still a bit floppy and needed some support. John began to roll over at the age of 9 months, sat up at about 14 months, and did not crawl until he was 2 years old. Shortly thereafter, at the age of 2 1/2 years old, John was able to pull himself to a stand. We thought for sure he would immediately start walking. Well...it took 2 more years until John was 4 1/2 years old, but we are the proud parents of a disabled child who is fully and independently ambulatory. It was a cold weekend in January 2008 when John was having a take home EEG test done when we had nothing else to do but work extremely hard to get John to walk and he did it! Cautiously, but he did it! From that point on, he took off with walking independently for longer and longer distances and we are so proud of him. He is still limited on the distance he can walk independently but he is doing a great job and pushes himself to the limit. John does not have the cognition to understand danger, therefore, we do still need to follow him around at all times, in particular up and down stairs which he still requires some assistance to master, but the fact that we no longer need to stroll or carry him places is incredible!
After a child turns 3, they are no longer eligible for early intervention services. It becomes then up to the local school district to provide those services to a child. However, if a school district is unable to accommodate the special needs of a child, they are required to outsource those services to a school that can accommodate that child's needs. Therefore, we had to go through an individualized education plan with the Town of Dedham. Luckily, our Town agreed with our decision that the Perkins School for the Blind in the deafblind preschool program was the most appropriate educational placement for John’s needs. Although it was an extremely terrifying transition from receiving early intervention therapies at home to going to a full day preschool program, we quickly realized that John was at an amazing educational institution with not only incredible and caring special needs teachers and teachers for the visual and hearing impaired, but also with its rehabilitation, developmental, behavioral and therapy services. Every staff member at Perkins truly cares about the happiness and well being of these very fragile little children.
Initially, we sent John to school with a nurse because of his g-tube feeds and his significant gastroesophageal reflux disease with aspiration. Although John did continue to rely on his g-tube for his main source of nutrition and present with severe reflux, we quickly realized that Perkins had the ability to deal with this directly. There is a school nurse in the building that spends some time in each of the classrooms, and each of the teachers and aides are trained to administer g-tube feedings for the children. After only a few months of having nursing at school, we began using the school nurse and the trained teachers and aides to feed John and handle his reflux episodes. At that time, John’s teacher, Mary, was not only John’s amazing special needs teacher, but she played the role of John’s nurse and caregiver.
John immediately adapted to his school environment. John was extremely social and he really responded well to Perkins' teaching methods. We quickly realized that Perkins was one of a kind and is a safe and nurturing place for our little sweetheart. Not only was Perkins an amazing place in terms of its education (with the total communication approach to learning) and rehabilitation and therapy services (with Occupational, Physical and Speech Therapies, Adaptive Phys Ed, Swimming, Computer Lab, Audiology, etc.), but every staff member really cares for and nurtures their students. One clear example of this was one day in July 2008 when John had his very first grand mal seizure and it was at school. His teacher, Mary, knew John so well that she was able to catch it before it even occurred. She immediately rushed him to health services where they were able to administer oxygen and essentially save his life. We are so thankful that the staff is so in tune to the children and really focus on their every move and exactly what they need at that very moment. In addition to an incredible education, Perkins also provides an extremely tactile environment for its students, which is important for a child with low vision and hearing. More importantly, the teachers really tailor the therapies and activities to each individual student. They have the ability to obtain outside consultations for additional assistance with a particular child’s needs. This type of individualized education plan is really what has caused John to progress so much during his initial couple years at Perkins. Unfortunately, during John's third year at Perkins, something happened...he began to regress cognitively and lose skills. Perkins immediately brought in a behavioral psychologist to work with John. Simultaneously, we had John evaluated at the Developmental Medicine Clinic at Children's Hospital Boston, where they diagnosed John with ASD (autism spectrum disorder). The behavioral psychologist working with John at school agreed and recommended that John be placed in a program whose teaching model was based on ABA (applied behavioral analysis) style of teaching, which rewards good behavior/skills rather than punishing bad behavior/skills.
John has made some incredible progress and we know much of that is not only due to the work of the incredible doctors, teachers, therapists, nurses, and other caregivers, but also due to the fact that we never give up on him and push him to his utmost potential in life, while of course being realistic about some of his limitations. Although we would love for John to someday speak and we will continue to work and hope for that, we understand that John may not communicate verbally; however, we at least want him to communicate with us by some other avenue. We continue to strive for more independence in the area of self help skills, with emphasis on feeding, dressing and toileting. We also continue to strive to build on John’s social interaction skills with peers and make new friends. Although we will never give up hope that John has the ability to become a fully functioning child that can lead as “normal” a life as we can provide for him, the reality is, John will most likely never live a completely independent life and we need to plan for that reality.
In addition to the therapies John received in his early years through both early intervention and at the hospitals (Children's Hospital Boston and Franciscan Children's Hospital) and which he now receives at school, we supplement those therapies with a number of other outside therapies. These include augmentative communication, occupational and physical therapies, feeding therapy, hippotherapy (horseback riding therapy), aqua therapy, craniosacral therapy, and many special needs sports programs (including baseball, soccer, basketball and dance). Many of these additional therapies are not covered by insurance, but they have helped John’s development so greatly, that we have sacrificed some of our own luxuries to give him what he needs.
Despite the very many challenges we have faced thus far with John’s birth, surgeries, development, etc., and the challenges we have ahead of us, we can’t stress to you how amazing our journey has been with him. John’s smile is infection, his belly laugh is contagious, and his hugs are amazing! John is by far the sweetest, happiest and most loving little boy we have ever met.
We are often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. Here is a poem by Emily Perl Kingsley that we have encountered that truly explains that journey and experience and puts it all into perspective:
“When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”
“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”
But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”
John Thomas is our "Holland" and each day, we enjoy the very special, the very lovely things about him!