The ability to communicate is a required part of the human experience. To be nonverbal in a world of words is a life sentence of exclusion.
KosAbility is a community diary series posted at 5 PM ET every Sunday and Wednesday by volunteer diarists. This is a gathering place for people who are living with disabilities, who love someone with a disability, or who want to know more about the issues surrounding this topic. There are two parts to each diary. First, a volunteer diarist will offer their specific knowledge and insight about a topic they know intimately. Then, readers are invited to comment on what they've read and or ask general questions about disabilities, share something they've learned, tell bad jokes, post photos, or rage about the unfairness of their situation. Our only rule is to be kind; trolls will be spayed or neutered.
Picture a life alone, locked in a bedroom, some toys to play with and you. No interaction except when you are let out to eat or use the bathroom. You attend school, a special bus picks you up and drops you off at your front door. At the school you are tourmented by others and withdraw even more. You begin to crave your room, your safe space, and you surrender your membership in the human race.
This is the situation my stepson was in when my spouse and I decided to seek full custody and try to help him rejoin the human race in a loving and caring environment.
Dylan is now 19. We began trying to get custody when he was 13. Family court in L.A. County. What a piece of garbage that institution is.
Dylan has Down Syndrome. His IQ is somewhere between 35 and 70, depending on who gives the exam. He has the abilities and understanding of a two to three year old. He has 19 years of life experience.
Most people don't know that there are three types of Down Syndrome. Dylan is an unusual case. His mother has Mosaic Down Syndrome and Dylan came from a Down Syndrome egg.
Down syndrome is a chromosomal abnormality.
Mosaic Down Syndrome is when a person has a mix of cells. Some cells contain 46 chromosomes and some contain 47 chromosomes. At some point during early cell division something goes wrong and one of the cell lines continues on with 47 as the rest of the cell lines divide correctly. The exact number of people with this condition is unknown as even genetic testing can fail to discover the issue if the cells tested are from the line of 46 chromosomes. His mother is of normal intelligence. She has one ovary with nothing but Down Syndrome eggs. A 50% shot of a Down Syndrome baby for any pregnancy.
You could have Mosaic Down Syndrome and never know it.
The life Dylan had in L.A. was sad. His mother failed to properly care for him but refused to give him up. We later discovered she was collecting money from California for his childcare and using it to pay for an illegal alien Nanny for Dylan and his two little half brothers. She was also commiting fraud by collecting money for respite care whenever Dyaln was with us. She was forging my signature and claiming that she had paid me cash for services and asking to be reimbursed for her expenses for his care. In three years her fraud amounted to just short of $10,000. In addition to these two unpleasant items she had also signed papers to commit him to a state home once he turned 18.
Family court is anything but family friendly. The judge never even laid eyes on Dylan. We had a 730 evaluation where we were sent to a psychiatrist who charged $12,000 and barely gave the situation a look, he was impressed with Dylan's mom and not so impresssed with us. The case dragged on for three years and cost us over $70,000. Since Dylan was nonverbal he could not tell anyone of the abuse and neglect he was subject to. We saw it every time he had a visitation. He would not get in the car to return home to his mother's after a visit, sometimes we would have to pick him up and physically move him and buckle him in the car, sometimes he would cry the whole way to his mother's. Bruises, covering his face if anyone scared him, a look of fear, odd sexual behaviors, so many things pointed to a life filled with pain. CPS said he was dressed well and clean - that was their level of required care. They did see the lock on the outside of the bedroom door but said it was not locked when they were out on their visit. It was heartbreaking. And we soldiered on through the court battle. Our world is based on impressions and status - his mother is an assistant principal at a L.A. Highschool. The judge seemed reluctant to believe any of the abuse, neglect, or fraud. Eventually the judge assigned Dylan his own attorney and she took a close look at the situation, she interviewed everyone and even met us at the park one day to see us interact with Dylan. She could see that we had a bond with him and his mom did not. Mom was made to pay back California for the fraud she committed (although she was never charged with the crime as part of an agreement with California)and we were finally given custody of Dylan.
So this is the happy ending - and the challenging beginning.
He arrived with serious trust issues and behavioral difficulties from years of abuse and neglect. He had lots of SPECIAL NEEDS.
The most important thing for him at this point was to establish trust and communication. Dylan is primarily nonverbal. He can speak but it is usually nonsense. He understands what you tell him but he can't formulate a sentence to communicate on his own. Lately his favorite word is carrot. Ask him how he feels and he will usually answer with "carrot" (this is an improvement from his favorite word being "shit" - which made me laugh on more than one occasion, but others didn't see the humor in it). He can answer yes or no questions although his answers aren't always reliable. He has "autistic" behaviors like rocking back and forth and staring at tiny objects and obsessing over them, but these have lessened since we began enhancing his communication. He requires structure and routine to feel secure. Changing plans or doing something he is unprepared for can cause a meltdown.
Little by little we discovered ways to make him at ease with his life and the world around him. Three strategies in particular made his world open up and allowed him to communicate with and rejoin the human race.
1. Consistency - We make certain that whatever we tell him will happen does happen. Trust issues are common in kids who have been abused and neglected. In three years he has gone from suspicious to confident. Slow and steady wins a childs trust.
2. Calendaring - We put up a month at a time. We list what he is doing every day. We read it with him. He knows, for instance, that today is a trip to go grocery shopping and tomorrow is school. His life is no longer a string of random events he has no control over. We calendar everything and do it with him. The end of everyday he crosses the day off and we read tomorrows events. We let him make some decisions about the days events, we ask him "what would he like to do?"
3. Communication - My husband started with picture caption books. They had a picture of something and a sentence underneath. He could look for the appropiate picture and show us what he wanted. This worked well for a couple of years and completely changed his world. Later we moved on to an iPod touch with an app called Proloquo2go.
He wears it on his wrist and can work the device pretty well by himself. This is a canned program with stick figures for some common things like feelings, then it has an area where we can put in a custom picture of something - like a picture of our beagles and add the sentence "can we walk the dogs?". The device has a speaker and it says the sentence in a male/female or robot voice. This has added the dimension of communication he has always lacked. We have about 50 pictures and sentences in his iPod now. We take a camera with us and he will indicate if we should take a picture of something. Then we suggest several sentences to go with the picture and he will say "yes" when we select the correct thing he wants to be able to say. With this little device on his wrist he can order a hamburger at McDonald's or tell us he has a headache. He is able to talk to us and others.
In three years he has gone from angry and scared to self empowered. He still has some bad days and occasional tantrums but the difference in the quality of his life is amazing. We have him in a life skills program through the local school district and he is learning to cook simple meals and do his own laundry. He is maturing, understanding and evolving. The transformation is remarkable.
Our life isn't easy, and to be honest, taking care of Dylan has been difficult on our marriage and the rest of our family. We raised three other boys and two live on their own now, and all six of us went through hell to get to this far. I can tell you that spending the other kids college money on Dylan and having to mortgage our house for him wasn't an easy sell either. I have had too many people tell me we were idiots to blow our life savings on such a defective child. There are days when I wonder what we were thinking. But I know it was the right thing to do.
The Special Needs will never end. The responsibility and care will last our lifetime and beyound. If you look at the picture below, you will see a young man looking you in the eye, no longer afraid of the world. What a difference a little communication and love has made.