Theo’s Family Journey
Theo entered this world 18 weeks early as a preemie. Health issues kept him in the Neonatal Intensive Care Unit (NICU) for 18 long weeks. During that time, he became very ill with lung issues which kept him on a ventilator for 11 weeks. The transition to breathing on his own and the use of oxygen called a loss of vision and the required medications to heal the infections and keep Theo alive contributed to damage of his high frequency hearing. As Theo’s parents, we had endured two miscarriages so the choice to give the medication with its possible adverse effects versus loss of life was a “no brainer”. Within the 18 weeks in NICU, Retinopathy of Prematurity (ROP) was diagnosed. ROP is an eye disease that can happen in premature babies. It causes abnormal blood vessels to grow in the retina, and can lead to blindness. Theo had a detached retina on his left side. He also had problems with his lungs so he came home with all the lung supports to monitor his condition 24/7.
We had been home for 2 weeks when Theo had a detached retina in his right eye. It was recommended that we take him to Detroit for further treatment. My husband and I were very quickly having to become the experts in decision making for our son. Our job was to look at Theo holistically rather than depend on the recommendation of a specialized physician. Our decision was to stay put rather than transport a medically fragile baby to Detroit and if it resulted in blindness, so be it. At least we would still have our son. It was 5 ½ years before that decision would haunt us. Theo’s glaucoma resulted in the bulging right eye so his eye was removed and we did not realize how much pain Theo had been in until the eye was removed. He seemed much more relaxed and recovered very quickly.
Theo started preschool at age 3. Since he was not on target in his growth and development, the struggle for teachers was obvious. One of the teachers specialized in Autism and recommended that Theo be tested for autism. The school district did the first testing. After he started to KSB it was suggested we take him to Weisskopf Center in Louisville for evaluation of his sensory issues. That diagnosis directed our path toward the Michelle P Waiver and other resources.
We began to explore transition options when Theo reached 5 years old. We decided Kentucky School for the Blind (KSB) would be the right placement and we worked with the local school district to make it a reality. The Admission and Release Committee (ARC) wanted him to stay at KSB during the week. I asked “If this was your 5-year-old, would you send him away to school for five days out of the seven?” After our refusal to send Theo to KSB as a boarding student, the DOSE suggested the day program at KSB with transportation daily to and from school. We were not comfortable with him riding the bus for over an hour without one of us being with him. So, thirteen years ago I became the paid bus monitor for those students who are visually impaired and going to KSB. That has been a wonderful experience that allows me to keep students safe and also keep up with the needs of Theo at school. It has been the best of both worlds. I will always be grateful to that DOSE who looked at my son as a little boy who could learn and recognized the need for a specialized program.
Theo is nonverbal and uses a dedicated speech device. He acknowledges friends and likes to sit with them. He is a “jokester” and has a joke page on his Talker. He loves to sit around and share jokes to his friends, especially at birthday parties! One of his favorites jokes is “Why did the gum cross the road? Because it was stuck to the chicken’s foot! “ Now, if Theo tells you that joke, just laugh – you did not hear it from me.
His absolute favorite activity is music and his favorite singer is Adele but likes all kinds of music, like Billy Joel, Cher, Celine Dion and Michael Buble’. We already have tickets to the Michael Buble’ in March and Elton John in April. Theo has been to several concerts and just loves them. Our family has season tickets to Broadway shows in Louisville – Theo has seen Phantom of the Opera, Chicago, and Lion King twice! He went to see the Lion King last time with all his friends. I ask him if he wanted to go and of course he did! His teacher said he was a perfect gentleman – no behavior issues, and he turned his talker off when the show started. How many young men do you know who loves the arts like Theo?
Theo is 18 years old now, and will have at least one more year of high school. He has been in the World of Work Program for about a year, and works at Lynn’s Café. The Café manager is actually visually impaired too. She has been really good for Theo telling him she “did not put up with any nonsense.” He has worked for about a year – the first 6 months he had to wipe down tables. Theo didn’t like wiping tables, but he did it with some prompts. Our approach regarding his work was “Look, every job will have things you don’t like and things you have to do. You have to do the pieces you don’t like in a job to get to the parts you like. That’s how it is I the real world.” For any work situation, I ask – “can you do the work”? If he can, we have used something he loves (music) as an incentive. With the sensory issues, his job coach and I look at where he will be doing the work and determine how we can help him succeed. Last year, he worked 2 days a week for 1 hour, then increased his time 2 days for 2 hours, so he works 4 days a week. This past summer, he worked at Kentucky Kingdom 5 hours, 5 days a week. He put together the souvenir cups. He carefully placed the handle on the lid; lid on the cup; then the straw in the lid. He also assembled the boats that food was served in. He would lay down the paper, then add a boat – independently stacking them using that pattern. In order to continue doing these jobs, I provided supplies for all the kids in his class at school so they could have the same experience and Theo became the mentor. Another job is filling the forks/knives/spoons containers and taking out the trash. Sometimes his coach has him try jobs (like the trash) to see what he can do. The trash was ruled out due to the lack of upper body strength to lift the heavy bags. Theo had four different coaches last summer and adapted quickly to each one. That is one of his strong points. During Theo’s work for J Gumbo, he bussed tables, with the goal of running the dishwasher after wiping the tables. One of his favorite incentives there was their lemonade! That would have been mine too.
Our dreams for Theo match his dreams. “Do you want your own place”, his father and I ask. Theo’s reply – “NO, don’t want to move out, staying with Mom.” As his parents, we just want him to be happy and have a purpose. He wants a job that he loves. I accompanied Theo when he toured LC Industries 3 times and he was thoroughly engaged. The best part of working there is that LC Industries hires persons with vision impairments. Employees are taught a job skill, and work 40 hours a week with benefits. In preparation for working there, I bought safety goggles and told Theo he would have to wear them to work. When he experienced the job and was told in order to do the job he must wear safety goggles – Theo said “I can do that!” He never wanted to wear his glasses, but after he determined he could not do the job without them – no more problem. Every time he goes out the door to work – he puts on the safety goggles. This learning was applied for his personal care habits he had struggled with. “When you work, you must put your coat and cane in the locker on arrival so you can work.” Theo replies, “I can work AND I can do that!” As Theo’s mom, I can read Theo so well in new situations. He is currently working at J Gumbo Restaurant bussing tables 4 days a week. His goal is to “run the dishwasher” so he buses the tables to do other things like “drink lemonade.”
In preparation for getting a job, Theo has gone through the interview process with 3 interviews to date. Common questions which usually occur during an interview were pre-loaded into the Talker. Theo needed some assistance and/or prompts in finding the response at times which frustrated him. Preloaded answers can be hard to find in a stressful situation as everyone has experienced within the interview process.
The greatest challenge for our family has changed with the years and the age of Theo. For many years, we were trying to keep him alive; as his health stabilized, the challenge become working with individual school systems. We saw a boy with great potential; some saw Theo as a boy that was non –verbal and non-responsive. It took time for the collaboration of parent/district to bring about training, find a speech therapist who understood Theo’s unique needs, and find the right speech devise. We experienced even professionals at supporting agencies often did not have a clue as how to work with him. It took time to establish a healthy respect between family and professionals. Families need teachers and others to “ask for help” when they need it. Some seemed to think “they knew it all” and from a parent perspective, I would rather someone could work with me to identify the problem and then together we can figure out how to fix it. I was at the school a lot, both subbing and as a monitor. I read Theo so well. A good example of problem solving happened once as I observed the interaction between a teacher and him at his locker. He stood dead still as the teacher continued to tell him to “go now!” This went on for about 5 minutes. I talked with the teacher later and pointed out how just standing and berating him did not work (he just shuts down), so next time, give Theo the information he needs simply – in one sentence (e.g. it’s time for lunch, let’s go) and walk away from him. He will need about 45 seconds to process the instructions, then he will come on. That is now on his Individual Education Program (IEP) – wait time.
This past summer, Theo and I had the privilege of attending the Extended Core Curriculum (ECC) week with the Kentucky Deaf-Blind Project (KyDBP). It was wonderful for me – I had freedom, like a vacation! I also brought my puppy who is in training to become a Service Dog. During this time, I had an AhHa moment! Theo was given an IPad the first day and he does better if he knows what is coming next. Since he carries a phone for music, an app was installed for a “talking calendar”. Since it was tied to Google, I could actually monitor the movements, set up the calendar for the next day – Theo received the alert, then the 2nd time it repeated the action on the schedule. Theo knew what was coming up and it made such a difference. As a result of this parent/professional collaboration, we had a successful outcome for Theo. It went with him to school this fall. It has his complete schedule (e.g. its 7:52 and you go to breakfast to 8:15 – in three minutes, you need to put your coat in locker; then repeats). The alarm gets Theo up; an alarm gets him on the bus; and the alarm tells him to get off bus. If any changes happen during the day, the teacher relates it to me – I go to his Google account, make the change, and it translates to Theo’s phone. Is that amazing or what?! We can set it up for the teacher and para to make the changes using Google, and it will let me know as well as alert Theo.
During ECC Week, Theo participated in horseback riding, learning about farm to table (from the dairy farm to the garden to picking vegetables), and managing money – just to name a few. I was fascinated by the other students and parents. I learned some things too – have you heard of HAPTCS? It is that subsystem of non-language communication which conveys meaning through physical contact. It allowed Theo to have a better understanding of his environment with touch on his backing. Since Theo has some hearing with a high frequency hearing loss and processing issues, I never learned sign language. I realized that it was yet another different world. The interactions between adults/students and peer to peer was so interesting. I found myself trying to figure out what was being said too! I was not eavesdropping, I promise.
I have a final reveal for anyone who works with or will work with Theo. Many times I go into his classroom and see him doing nothing. I also observed him at pulling the same behavior at ECC doing nothing. I find out he has told his teacher or therapist “I can’t.” My response to Theo is “Why do you play people?”. I had to call Theo out on this one. He looked at me and smiles “I don’t have to work as hard.” After all, you need to remember he is an 18-year-old boy – he will get away with what you let him. Sounds like a typical 18-year-old to me!