The Road Travelled, The Road Ahead
Transition, Pre-Employment and Assistive Technology
Recently, we had the chance to sit down with a past borrower whose son just turned 18. Years ago, this family took out a PATF loan for a communication device and software for their son. Now, he’s getting ready to graduate high school, and through this interview with his mother, we got a glimpse into their lives as her son approaches adulthood.
Tell me a little about your son.
Kyle is 18 years old and loves sports, animals, cars, planes, trains and has a great sense of humor. He has two dogs and a big brother, who are his best friends. He has a diagnosis of an intellectual disability and a motor speech disorder.
Would you mind talking about your experience of his diagnosis?
I had a very typical pregnancy and Kyle was born with few complications. However, from the first moment, he became very sick. There were also signs that Kyle was delayed in reaching some developmental milestones. His pediatrician sent us to specialists to have Kyle evaluated for early intervention. After the developmental doctor (who knew there was such a thing?) had the same concerns as the pediatrician, we were referred to a pediatric geneticist. The pediatric geneticist then sent us for a series of tests, including blood tests and x-rays. At the time, we had no idea the significance of these illnesses and delayed milestones.
Around Kyle’s 1st birthday, I remember getting the call from the genetics doctor. It is a moment I will never forget. She told me that Kyle had a very rare genetic disorder. I remember walking around the house on the cordless phone and sitting down on the floor in the hallway trying to process what she was saying.
“I didn’t realize how life-changing this would be for all of us.”
Kyle’s formal diagnosis is partial trisomy 3p and partial monosomy 18p. Meaning he has an unbalanced translocation of chromosome 3 and chromosome 18. This diagnosis ultimately would mean an intellectual disability, and led us to more specialists, hospital stays and surgeries. Kyle was born with a hole in his heart that was surgically repaired when he was 4. Once his heart was repaired, his illnesses decreased dramatically. He is still monitored by his immune and heart doctors.
One thing I am always thankful for, is that the pediatric geneticist did not share any predictions or stories about similar patients with us. She only told us that Kyle (at age 1) was already exceeding all expectations and will “write his own story”. His heart doctor encouraged us not to treat him any differently than we treat his brother. We try to always remember this!
How have things changed as he’s aged? What has gotten easier, what has gotten harder, what has been surprising?
When they are little, the differences in growth and development between children are less noticeable than when they are older. For instance, a child at age 4 or 5 may know how to read or recognize some words and may or may not be understood (it’s not unusual for some children to be faster learners). But, when your child is a teen and still struggling to learn, read and speak, the contrast between peers becomes much more apparent.
I never thought or expected that Kyle would still need help with simple daily living skills like hygiene, telling time, & simple meal prep. That, at age 18, he would still need reminders to go to the bathroom, brush his teeth, take a shower, etc. I didn’t expect that I would still be occasionally changing wet bed sheets, and that I wouldn’t be able to leave him unattended for more than a very brief period of time. The idea of making sure he is cared for 24 hours a day, 7 days a week (with no end in sight) is overwhelming some days. This became more apparent when his older brother went away to college last fall. As much as I wanted Kyle’s brother to go to college and discover himself, I also lost my helper.
I am fortunate to be able to work part-time. I have very supportive supervisors and co-workers. I am quite sure I would have been let go if I worked anywhere else with a less than understanding work environment. Fortunately for me, my co-workers have had similar experiences, and have been able to share some of the good, bad and ugly things to expect when raising a young adult with a disability (some hilarious and some terrifying!) I wanted to write this blog to help other parents in this same way.
Kyle is part of the high school football team, and goes to every practice and game with the team.
We have been very fortunate to have a community that is so supportive and includes Kyle in ways I had never expected. Kyle is very involved in school and extra-curricular activities. He is part of our high school football program. He goes to every practice and game with the team. The coaches and boys on the team treat him like just one of the guys. This has given him a feeling of pride that I could never have dreamed of. The demands of the football team to show leadership, respect for others and to be a positive role model have been a great experience for Kyle too. He is held to those same expectations.
Can you talk specifically about transition – tell me about what it’s like to have an 18-year-old with a disability. What is involved with having a child with a disability turn 18? What is it like for you personally/emotionally as a mom, but also what is it like in terms of getting supports you need and setting up Kyle for adulthood?
Kyle’s father travels a couple weeks out of the month for his job. We have very supportive extended family, but they live out of state. Now with Kyle’s brother being away at college, most of his care is left up to me. We registered Kyle with the intellectual disability office in our county to try and access services through a home and community based waiver. What we learned is that there is a waiting list – a very long waiting list. We have already been waiting for 2 years. From what I am told, if we are lucky, he may receive help when he turns 21 – but that is not even guaranteed. There is no help available now or in the near future.
What is this like for me? The truth is, on some days I feel like I have lost who I am. Finding time for myself is very, very rare. I always have to think of Kyle’s care first, and this is the way it will always be. There is never a chance to be spontaneous. I get what I need to get done between school hours. That’s it.
Most 18-year-olds are excited about the idea of life after high school. Some head off to college, trade school or the military. This was true for Kyle’s big brother and his friends.
“For Kyle, transition means transition to what? We are not exactly sure.”
He wants to be independent, but doesn’t really understand his limitations and vulnerabilities. If you ask Kyle, he says that after high school he wants a job, either signaling planes to taxi to their gates at the airport, working for SEPTA, mowing lawns or working at a hotel for dogs!
Kyle adores his own dogs, and can’t wait to volunteer at a local animal shelter this summer.
So how do we make his dreams come true? The school district’s idea of transition and working on employment-ready skills is not going to help Kyle reach his dreams. He doesn’t want to sort, shred, paper-clip or stuff papers in envelopes. He also is not interested in cleaning office buildings (another suggestion). He wants to work with planes, trains or animals one day. So, we are pushing our district to think outside the box. This summer, Kyle will be volunteering at a local animal rescue center. The school district is providing an aide to help Kyle learn skills and to help him with things like staying on task, time management, etc. He is very excited and can’t wait to start.
“I believe with some guidance, Kyle will be employable in a job he loves.”
He may not make enough money to support himself, and will always need someone to look after him, but he deserves a sense of purpose.
Kyle applied for Supplemental Security Income (SSI) benefits through the Social Security Administration. We can support Kyle by using these funds for things like paying for attendant care ourselves while we wait for waiver services to start (if they ever do). Kyle also opened an Achieving a Better Life Experience (ABLE) account to start saving safely. Kyle doesn’t understand what SSI benefits mean, or what “unearned income” is. I have been concerned as to how to explain this to him, but as his older brother pointed out, “The fact that you can’t explain unearned income to him, is exactly the reason he needs it”. How true. Enrolling in all of the government sponsored programs for a person with a disability can be daunting. I have learned to go straight to my State Representative’s office if I run into any road blocks.
Do you have any useful tips for other moms/dads related to transition? What has been the most helpful thing/organization/person/whatever for you?
Parents that have been in similar situations before me have always been my best resource. This has been true from the very first Early Intervention experience through to adulthood.
“Parents that have been through it, ‘get it’ and keep it real.”
Also, remembering that your state and federal legislators are here to serve their community and can be extremely helpful.
Can you talk about Kyle’s and your experiences with him volunteering and preparation for his employment?
I think finding an employer that is willing to take that chance with your child’s limitations and needs is important. While inclusion and opportunities should be available and accessible to everyone, we didn’t feel comfortable forcing a situation where an employer is reluctant to provide the necessary accommodations. At the end of the day, you want your adult child to feel a sense of purpose and feel needed and respected in their job. I contacted six places for possible employment. We were thrilled to hear back from five and, of those, three were very willing to work with Kyle. Now, Kyle is excited to start at the animal rescue center this summer. I try to always remember that Kyle has a right to be happy, feel a sense of purpose, and have dreams, likes and dislikes just like everyone else. I will do my best to support him in achieving those things.
What AT supports Kyle specifically in this transition phase?
Over the years, we have used numerous types of assistive technology for Kyle. Early on, to help him with communication, we started with low tech picture boards that eventually evolved into high tech communication devices. We also had safety concerns with Kyle. When he was little, he would wander. We had a wake-up call once when Kyle was found outside, in his pajamas, in the middle of the night (in winter in Pennsylvania) looking for me while I was away on a business trip. This led us to purchase a house alarm system to alert us when doors open and close, and a fence to aid in keeping Kyle safe (and give us some peace of mind).
Kyle uses his smartphone in a variety of ways: from calendar reminders for day-to-day tasks, to albums of photos he uses as a prompt when he is having trouble communicating verbally.
Now at 18, Kyle’s primary assistive technology device is his iPhone. He has a communication app on his iPad as well, but he refuses to use it. The other high school students use their phones, and he wants to be like everyone else. If it’s not on the phone, he is not interested, no matter how it helps. That’s it, end of story. His iPhone helps him in many ways, though. He has calendar and time reminders, uses the calculator when needed, listens to music, and also takes photos of things that are important to him so he can share them when he can’t verbally communicate what he wants to say.
This is a brief snapshot of life with Kyle. This amazing kid, even with his limitations, has taught me so much. He has taught me compassion.
“Every time he cracks a typical teenage boy joke, he reminds me that it’s OK to be silly. I have had to learn not to fret over small things (there will be bigger things to stress over!)”
I have learned from Kyle that it’s OK to ask for help sometimes – that if plan A doesn’t work out, there is always a plan B or C or D. Seeing Kyle work so hard for all he has accomplished has taught me to appreciate what’s really important in life – health and happiness.
Learn more about how PATF can help you and your family navigate the resources available to fund the assistive technology you need.