I am an adopted Daddy for a young lady named Lena who was born with a genetic abnormality called Dup15q Syndrome. This genetic disorder has a second Chromosome 15 attached to the other. This duplication affects the body and mind- they may have issues such as: Autism, Hypotonia (poor muscle tone), small stature, seizure disorders, anxiety, cognitive delays which result in behavioral issues, and sensory disorders. Children’s functioning abilities can range from being silent in a wheelchair to someone like Lena who is high functioning. Sudden death is another result, and many children do not live to be full grown adults. Sadly, It’s not uncommon to hear of a “Duper” passing away at a young age.
There are many obstacles a Duper experiences. Although there have been breakthroughs in medicine via studies, there is no cure. Funding for these types of studies is mostly by fundraisers, such as the Dup15q Believe Walk that is held annually across the nation. I hope by the time you are done reading this you will do some research on Dup15q, and consider participating in a fundraiser or two.
I met Lena when she was just entering her teen years at 13, and she will soon be 18. She is an amazing young lady, and being a part of her life has been wonderful, and I look forward to many more years.
While I thought I knew a lot about raising children and their antics, I was not prepared for what laid ahead for me.
Her mom really didn’t tell me much about Lena. We dated a bunch of times, and apparently, I passed the first test. The first time I met Lena, I walked through the front door and I was greeted by a happy, smiling, young girl wearing a red dress with black fringe, like a Spanish dancer outfit. She did not make eye contact with me….but held out her hand and said, “Nice to meet you. Would you like some coffee?” I responded with a, “no thank you,” and we settled on tea. She was very happy with my selection.
Her mom made chicken dinner. The table was set, and Lena started taking pieces of the chicken and asking me if I would like some holding it out to me. While she was doing this, I noticed she was drooling on the food. Most people that have never been around this would have an uncomfortable feeling. Her mom acted like nothing was out of the ordinary. We ate dinner then enjoyed the rest of the evening playing UNO, watching a little TV, then sitting outside on the deck looking at stars. When 9 o’clock rolled around, it was time for Lena to go to bed and for me to go home. My first experience seemed to go smoothly.
I went home and thought to myself what am I doing? Do I want to be in a relationship with a lady who had a special needs child? I came to the conclusion I did not. I called her mom and tried to break up with her. She reprimanded me…saying a real man wouldn’t just walk out because Lena was special needs. So, I put my tail between my legs because no woman was ever going to accuse me of not being a real man. I raised two sons from toddlerhood as a single parent and went through some tough challenges. But this– this would be a test of patience at a level I never thought I had.
Lena’s mom and I dated for about six months, going on family outings, and I don’t know if she intended to be this way, but I was “thrown into the water” to learn about Lena. I have to say, it was not easy. Many times I thought…what am I doing? I was 54 years old, a massage therapist, and could travel the country with my massage table. But something was happening to me. My eyes started seeing something different, and my heart started to feel something I have only had for my children.
Her mom asked me to move into her house. My lease just happened to be ending, and the timing was just right. So I did. I was now a full-time person in Lena’s life.
My “do what I want to do life” was over. My daily routine was getting her up, and making sure she got dressed with her clothes on the right way. I tried to teach her the tag goes to the back, but it didn’t work on shirts that had no print on the front.
I would make her a good breakfast, so her tummy was happy. I made sure she took her daily regimen of drugs. We then would sit on the couch and watch Caillou waiting for the bus to come to take her to school. However, as I would open the door for her to go to the bus, she would sit on the floor and yell, “Tell them to go without me.” I would try to pick her up by her harness, but she was dead weight. So, I would say “Ok, I’ll tell them to go.” Then she would start yelling “NO! I want to go on the bus!”
We would go back and forth on that for 4 – 5 times almost every day at one point. Something was going on with the bus that she was experiencing an anxiety attack. The first time I told the bus to leave she ran out the door and started running down the block. I bolted out after her, but had to be careful on how I tried to restrain her, because she was like an 80lb fish with arms and legs kicking, yelling at the top of her lungs. While she was trying to escape me, someone called the police thinking I was trying to abduct her. The police came, and it was kind of hectic, but I explained to them what was going on, and she immediately calmed down for the officer.
She said, “Daddy will you drive me to school?” That was the first time she called me “Daddy.” I felt pretty special. I had the daughter I’ve always wanted, and I had a new purpose in life.
The ride to school was not uneventful. We stopped at McDonald’s and got her another breakfast. She loves that place. It is my calming place technique. Well, she got upset again and started wailing on me while I was trying to drive the car. I pulled over and told her to breathe. It was another calming technique. We breath deep breaths together. It worked, and we continued to the school.
Her school is an Easter Seals‘ school. It is for special needs children and adults. that need special attention. Every year they do a talent show. The first show I went to, Lena sang,”Roar,” by Katy Perry, and she had the place rocking.
Five months a year, Lean goes once a week for two hours to “Special Theater.” They practice with very patient volunteer teenagers and adults from the area. These teenagers volunteer every year, and Lena’s buddy who has been with her for four years, went off to college this past year, but her younger sister is now Lena’s buddy.
The first time I went to a play, I watched the players intently. All these children had some sort of disability, but that was not keeping them from having fun. I thought these kids are amazing, and when they started singing the song “World’s Greatest” by R. Kelly, I saw Lena, and feelings of pride overwhelmed me. I had tears running down my cheek, and I was trying to pretend I had salt in my eye from the popcorn. I was fighting hard not to start a full blown cry.
Lena also participates in the Special Olympic games every year. She usually does the shot put and can toss it about a foot from her feet. She also does a 100-yard dash. She has dozens of medals from placing first or second. Last year was the first time she got bronze in the 100 yard dash. She was running and beating everyone by a long shot, but when she came up to the finish line, she stopped, turned around, and started waving to the others to hurry up. After all the kids had passed the line, she was satisfied and crossed it herself.
The local High School has a “Special Needs Prom” every year. Lena loves to get dressed up for this night. She wears a beautiful shoulder strap dress and heels; she gets her nails and hair done. Students are then matched up with a “date” for the night. Most of the time it is boy/girl, but depending on the mood of the Special Needs person, they may be matched up same sex. These students are really generous and kind kids, and many times long lasting relationships blossom from these dances.
I call Lena my Goofball. She asks me to tickle her, and she starts laughing…even if I’m not touching her. Another thing she does is chase me around the house playing tag running around the dining room and kitchen. We read books together which are at the first and second-grade level. She does not have the motor skills to write, so we pretend she is taking my food order which is a paper full of scribbles.
Bedtime is a special event. I used to read to my boys every night until they told me they were too old. I love to tuck Lena in bed and try to read her a story. I usually have to make stuff up because she is grabbing at the book trying to turn the pages. Eventually, her eyes start to close. She says, “Daddy…kiss.” She kisses me on the cheek, and I kiss her on the forehead and brush her hair with my hand. She is an angel. Do you love me with all my heart?” “Of course, I do,” I answer back.
Lena is really friendly. She loves to talk to strangers. I brought my car in for an oil change and in the waiting room were about 15 people trying to stay in their own little world. Lena knows no boundaries as far as asking questions. She will continue to ask questions until the person walks away. It is frustrating, because some people are really annoyed, until I tell them she’s autistic, which is more well-known than Dup15q. Then, they are understanding. We try to teach her not to talk to strangers, but it just doesn’t work. We, and other parents worry about the predators out there that will take advantage of someone like her.
Lena’s emotions are that of a 3-year-old. You never know what mood she will be in. One second she will be laughing, the next violently swinging, kicking and swearing. One time, I took her to McDonalds, and she was fine going in. She went to the bathroom, then came out walked to the front and started firing everyone, using profanity while she was doing it. Most of the employees were Non-English speaking employees, so they just looked at her puzzled. It was kind of funny, but not funny. Once again, I used my superhuman patience, calmed her down, and we were off to our next destination.
One thing I fear is when her mother or I am no longer around. Her uncle just passed away and my father within a week. She is distraught while pretending she is on the phone talking to 911. She describes in great detail what is going on. Lena, and many people that suffer from some sort of mental disability, have an uncanny ability to remember certain things. She keeps asking me about where her uncle is, and how my father is doing. I finally decided to tell her my father is at home with my mom. I see the way she is acting with these two people. How will she act when it is one of us? She doesn’t understand death.
There are millions of people that suffer from some sort of disability that they are not able to care for themselves. The question is who is going to take care of them? Who is going to be patient and loving when they act up? Are they going to sit and cry for hours and hours calling for their loved ones? This really bothers me. Especially when Lena says things like…”You’ll never leave me, will you Daddy?” My heart breaks. My soul aches. It is an emotion stronger than anything I have ever felt. I pray to God not to let me die before her. But I have to be realistic– she is almost 18, and I am 59. I won’t be here for her some day. This is a weight so heavy, but I try to remember we have now.
Our politicians do not properly fund programs to help these people. To be realistic, where will all the money come from for these programs? Social programs funding needs are growing at an alarming rate. People who need special services are growing each year. Where do the needed caregivers come from? The pay rate is not very good, so many times it’s people that just want a job who apply. Lena, like many others, will just become part of the system. She is more fortunate than most due to the fact she has a large extended family that will step up when the time comes. But she will most likely wind up in a home specifically for special needs people. I just pray God will be good to her for the rest of her life.
Science is making new advances all the time, and that gives me hope. But maybe then she wouldn’t be the happy person that laughs all the time, like she is now. She is an angel.
As I was finishing this article up, Lena walked into the room and asked about a dog I had a long time ago. I told her he used to dance. So she wanted to see a dancing dog. I found this Dancing Dog YouTube video, and she laughed hysterically.
Please visit the Dup15q Alliance web page and spend some time learning about this Genetic Disorder: Dup15q Syndrome.