An Interview with Maria Mosher and her daughter, AllisonBy Catherine Wayland
Cat: When did you first recognize that Allison had signs of Smith-Magenis?
Maria: We didn’t get that diagnosis until Alli was 10 years old, but at 2 years of age, we started noticing that Alli wasn’t meeting her developmental milestones.
Cat: How did the signs appear?
Maria: Mostly in her speech. So we had a typical assessment taken of Alli that involved evaluations by occupational therapists, physical therapists, physicians, educators, etc.
Cat: What did they tell you at that time?
Maria: At that time we were given the diagnosis of Apraxia which is a neuro-linguistic disorder involving how the brain communicates correctly or incorrectly to help people talk normally. It is quite a vague diagnosis where the scope is difficult to understand.
Cat: I understand that, I have a relative who has recently had a similar diagnosis.
Maria: That is much of the focus in the beginning when you realize your child has special needs. It is a lot of data gathering and assessments and diagnosis. Some of it is guessing and alot of it is using your gut instinct.
Cat: Of course. As mothers we know our children intimately. We observe them in every waking moment and much of their sleep as well. We know when doctors haven’t gotten it right based on their limited observations. But they are the scientists, and we are the data-gatherers for their findings. It is a patient and careful relationship between doctors and parents that isn’t always handled as it should be.
Maria: You learn as a parent very quickly that you must advocate for your children in the face of experts.
Cat: How did things further along after Ally was 2?
Maria: Well the neurolinguistic is a strong focus of the issue but there is also motor activities, depth perception issues, sleep disorders involving interrupted REM sleep, social interactions, etc.
Cat: Oohhhh, poor Maria, sleep disorders?
Maria: Most mothers lose sleep the first 2 years of a child’s life. I have 2 other children that was true for. Allison is now 17 years of age, and I still hear her wandering the house at night.
Cat: So Allison, what is your favorite subject in school?
Allison: Math, Gym, and Homeroom.
Cat: I see you like music, you are wearing headphones, what is your favorite music?
Allison: Hip Hop, Broadway Musicals, and the Doodle Bops.
Cat: I love the Doodle Bops. So you like musicals?
Allison: Yes, I just performed in Guys and Dolls.
Cat: What character did you play?
Allison: I was a sightseer, my boyfriend played Big Fat Junior.
Cat: Ahhhh, Big Fat Junior. Jax has his first girlfriend this summer, Priscilla. I love to hear about young love.
Allison: Matt won me a stuffed animal at the carnival.
Cat: What stuffed animal?
Allison: A Bear.
Allison goes back to listening to her music. She joins and rejoins our conversations frequently and is delightful with Brodhir, my youngest son at 2 years of age.
Cat: So music is very important to Allison?
Maria: Yes, she loves music and plays. Allison is a bundle of energy. She wakes up everyday with a smile.
Cat: So Smith-Magenis does not affect behavior in a negative way?
Maria: Ohhh no, it does. It does very much. Allison gets frustrated and when she does she will bite her hands. This is common. It seems that with Smith-Magenis there is a lower pain sensitivity. We have been very lucky with Allison. A great deal of children diagnosed with Smith-Magenis break windows and have terrible tantrums.
Cat: That is hard for the families. It is hard for the other children in the family to understand.
Maria: Yes, I won’t lie to you, we have all the normal stuff and then some extra challenges with Smith-Magenis, but there is always the positive that balances the negative. My other children have more insight than other children to difference. Allison has opened a whole world for us that we would otherwise never know. We are better people for it.
Cat: I brought up prenatal genetic testing in another interview I did with Crystal Bergman who was born with Spina-Bifida, what do you think of that?
Maria: I think a world of all perfectly normal children and adults would be weird.
Cat: I think you are right. Do you have other family as support? I met your husband, and he is wonderful.
Maria: Yes, he is and that is so important for Allison and the other children that their father and I stay a team. I stayed near my parents and my in-laws to get help and that has been a tremendous support. Her Uncle Chris has never had children and Allison and he are very close, they go to the movies.
Allison: Yes, Uncle Chris and I go to the movies. Is this toy from Brum?
Cat: I don’t know Brum, is that a movie?
Cat: Oh, I’m not up on that yet. We have just finished collecting all the characters from “Cars” with Owen Wilson.
Allison: Oh yeah, “Cars” that was good.
Cat: You are so sweet to Brody, Allison, thank you.
Allison: I want to pick him and take him home with me.
Maria: You really care about people, don’t you Allison?
Allison: Yes, I do.
Cat: Well, that is the most important thing of all, and you are an expert there, Allison.
Maria: Yes, that is how I see it as well.
Note: The website, www.prisms.org is a comprehensive support site for families and educators with a SMS child or adult in their lives. The site is translated into multiple languages by babelfish. PRISMS also lists global links to Germany, Spain, Mexico. The following is a quote directly from the PRISMS site:
Common features include: characteristic, yet subtle, facial appearance, infant feeding problems, low muscle tone, developmental delay, variable levels of mental retardation, early speech/language delay, middle ear problems, skeletal anomalies and decreased sensitivity to pain. The syndrome also includes a distinct pattern of neurobehavioral features characterized by chronic sleep disturbances, arm hugging/hand squeezing, hyperactivity and attention problems, prolonged tantrums, sudden mood changes and/or explosive outbursts and self-injurious behaviors. For a more complete list of physical, developmental and behavioral characteristics, go to www.prisms.org