Laura
by Mary Beall, M.Ed. (Laura's mother, Special Ed Teacher and wife to Randy Beall, PRISMS President)
Our 19-year-old daughter, Laura, was diagnosed with SMS 7 years ago. At that time, there was not a website for information. Our genetics specialist gave us a photocopy of a list of symptoms. We recognized our precious Laura in so many of them. She has chronic ear and bladder infections, hearing impairment, eye problems, hoarse voice, slight scoliosis, decreased sensitivity to pain, speech/language delay, hyperactivity, self-injurious behaviors... the diagnosis explained so much of the last 12 years. The traits that surprised us most were "dysmorphic facial features" and "mental retardation”. I thought that dysmorphic meant "funny-looking", and we think Laura is beautiful. I have since seen many children with SMS, all beautiful, especially their smiles.
For
awhile, we were also not sure that the word "retardation" described her abilities.
Although Laura was certainly delayed in speaking and motor skills, she always
had a bright-eyed look about her. She learned 200 signs before she was two years
old. She learned to read before kindergarten. While in kindergarten she was
given two IQ tests, both scored her as normal intelligence. (both were tests
of non-verbal intelligence since she still wasn't speaking much then.) We did
not believe (or want to believe) that she had retardation. We thought that word
meant "slower than average " about everything, and we knew her to be better
than average at many things (computer use, geography knowledge and letter/word
recognition, and most importantly, "heart") However, we now know that IQ tests
for small children involve tests of "concrete learning"-what you can learn with
your eyes, and ears, and hands. Later, intelligence is measured by more abstract
thinking skills, and those give Laura more trouble. IQ tests given as she got
older reflected skills in the mental retardation range. We have accepted that
now, since we now know many wonderful people with mental retardation, with many
different skills and personalities. She does not stop learning, she just learns
at her own speed, and definitely in her own way. Laura’s best skills are self-taught.
She learns by watching, or with computer games, toy computers, brainquest cards,
musical teaching tapes, videos, books and tapes, geosafari, and puzzles.
Laura was completely in the mainstream from her 3-year-old preschool class until part of third grade. The success or failure of each year completely depended on the attitude and skill of the teacher. We were so lucky to have such amazing teachers. From 3rd-7th grade she went to a nurturing alternative private school for special needs students. They taught us so much about helping her with behavior. The best thing they did was "believe" in our efforts, they were our partners, not our critics. She is now in a public school special program, but goes to classes with her typical classmates about 1/2 of the day. The classroom teacher modifies her work there. Laura's ability to do schoolwork is more limited by her attention span and impulses than it is by her ability to learn.
She can count money, read the newspaper, fold laundry, call a friend, install computer programs, quote memorized Bible verses. She writes (but types better), and can take phone messages. She can read well but doesn't choose to read for pleasure much. She likes videos but not movie theatres, and her TV preferences include game shows, infomercials, and TV preachers. She cooks simple things, and makes my hot tea in the morning. She can tell the doctors all about her medicine-what she takes, how many milligrams, what time. If she is ill, she calls to cancel her own therapy Laura still bites her hand, several times per hour. Usually she is expressing frustration, but it can also be because of change, excitement, just any overwhelming emotion. It only lasts a moment, but her poor little hands are pretty scarred.
Her ability to handle frustration is slowly improving with maturity. Randy started teaching her to ride a bike at about age 8. She usually would try a few times and then throw down the bike, and say "Stupid Bike, Stupid Daddy, " and would continue to yell at him even after he got her going. Often, she would call him an "underwear head" for the rest of the afternoon. She has improved over the years and so has her attitude. Now after she yells, she says..” I’m sorry, I’m not mad at you, I’m just frustrated that I fell." She rides well now... right down the middle of the road! This morning she got up and decided to go off for a bike ride alone in our neighborhood. Although my heart pounded for the 17 minutes that she was gone, she returned just fine. She knows lots of safety rules, but responds more to her own impulses. She can tell you all about "stranger danger" but if someone smiles and says hello to her, "they are not a stranger."
She is defiant when given a direct command, but ever so helpful if you hint that you have a problem she could solve. For the last month, she has cleaned the kitchen most nights and made lunches for the next day, all this without being asked (although she doesn't turn down my offers to pay her). A couple of times a week she still raids the refrigerator, decorating the counters with grated cheese, ham, butter, raw eggs, coke, and cinnamon, but she usually cleans most of it up.
She
has been sleeping most nights through for the last several years (with medication).
When she does awaken, she doesn't bother us. (My heart goes out to all who don't
sleep, I remember...) It has been awhile since I found the bathroom decorated
with toothpaste, although she is currently fascinated with her sister's hair
gels and mousse. Most nights if she awakens she just stays in her room watching
videos or playing monopoly-with herself.
She cannot be forced to do something. Once she is upset, her adrenaline flows, and she (I believe) actually cannot comply with your request. I know this, but I still sometimes try to force her, and end up with a huge confrontation. She does better when we "coach" in good behavior choices, instead of demanding compliance. She needs some freedom to choose. She loves to be in control, and will often suggest a compromise; usually we have to compromise on the compromise. It is infinitely more effective to distract her from her anger or to change the subject than it is to "take her on". As soon as she is calm, she is sweet again.
Laura still has tantrums, but they don't happen as often, less than one per week and those usually last only a short time. A few times per year, she gets in a bad cycle of behavior, where they happen daily. It is clear to me now that she does not want to be that way. She can talk about it afterwards now, and asks for " help with her angry". The best interventions we have found to help her with her inner storms have been medications and controlling our own reactions to her outbursts. When I can look at her behaviors objectively, I realize what a courageous effort she makes to cope with her SMS. I look forward to research efforts that can help her with that fight.
Coping with SMS is very difficult for the family too. A lot of our time is spent in doctor's offices and at therapy. It is difficult to get childcare, to find friends for social outings with her, and adult friends who understand what our life is like. (We have a few and they are awesome). If we go out without her, we often get called home for a minor or major emergency (once she locked her sister and the babysitter in a room without a phone, and had a "good time" around the house by herself.) Sometimes out in public, we experience the negative judgments of people who have never "walked a mile in our shoes." We have lost her in many public places-she is quick and slick! Anything we do, and anywhere we go, we have to be prepared for hyperactivity and mood swings, sleep problems, and medical issues.
If we are not too tired or stressed to remember, we bring an extra change of clothes, Band-Aids, wipes, coke money (a bribe)...and that's just for a trip to the market. Longer trips and vacations take creative planning-like the week we spent at the beach with the family. We took her backpack along and walked the beach with her in the wee hours so she wouldn't awaken the family at the beach house. The hardest times are just funny memories now. The early years were definitely the hardest.
Surprisingly, Laura's SMS has also been a great benefit to our family. We have learned just how understanding many people are. We have met countless people we would not have known (Laura speaks to everyone). Salespeople and clerks take extra time with her because she calls them by name (reads their nametag). We have all learned patience, and to ignore what we don't like, and praise what we do. Laura has taught us to forgive and forget, as she does so readily. Her 16- year- old sister, Jenny, has gained incredible experience in dealing with people who are being difficult, and is not spoiled by having life too easy. She has a first-row seat in how to take on life's problems. All of us have learned to prize the moments that are good, and not let the bad times spoil the whole day, or trip, or experience. We laugh as often and as long as we can, and Laura provides plenty of funny stories for us to tell. I met lots of families at the SMS conference last fall, and they are all so nice, they must have learned a lot about humanity from their SMS blessing too.
I don't really understand too much about the chromosome deletion responsible for Laura's SMS. It seems incredible to me that a little "puzzle piece" missing out of each cell could cause so many problems. However, when I think about our sweet daughter, a deletion problem just doesn't describe her. Sometimes I think that missing piece of her chromosomes was replaced by an extra dose of love. Laura is the sweetest, most precious, child. We wouldn't trade her for anything.
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