Shannon O’Boyle doesn’t understand concepts like waiting, time, consequences, and danger
Shannon Colleen O’Boyle is a beautiful, brown-eyed, incredibly strong, eight-year-old girl who knows what she wants but can’t always communicate it. She lives up to her Irish name with an extreme stubborn streak and “off center” sense of humor. She is adored by her family. Most important, she teaches those around her the importance of enjoying life simply for what it is.
When Shannon smiles or squeals with delight, you can’t help but feel so full of joy that you want to burst. Her happiness can literally stop you in your tracks.
Shannon faces many challenges in her daily life because she has Phelan-McDermid Syndrome. Although this is a very rare diagnosis, it can most easily be described as having many of the characteristics of Autism Spectrum Disorder. The most prominent of these are lack of verbal speech, severe cognitive disabilities and sensory integration issues.
Although Shannon can walk (and run quite fast when she wants) her balance and coordination are poor. Her fine motor skills are limited, which means that she cannot communicate with sign language, dress herself or feed herself properly (but boy can she eat!). She has severe ADD, which makes learning new skills difficult. Although we don’t know the extent of Shannon’s cognitive ability because she cannot be easily tested, she appears to understand much of what we say if the message is simple. She does not however understand more abstract or complex concepts like waiting, time, consequences, and danger.
Shannon cannot always communicate her needs. Imagine not being able to ask for help, communicate hunger or pain, or express fear. We are working on teaching her to use a communication device so she will be able to express her wants and needs, but learning and mastering this skill will take time.
A service dog will improve Shannon’s quality of life, provide friendship, help keep her safe and discourage behaviors that are socially inappropriate or threaten her safety. Ultimately, we hope Shannon will have more independence.
Companionship: Shannon’s best friends are her brothers, Kevin and Sean. Unfortunately, they are her only friends because she does not seek the company of other children. She loves to watch videos, but always likes some company on the couch. When everyone is busy with homework and other daily activities this can be difficult. Having a dog to hang with Shannon while she is watching her shows will be great for Shannon and us.
We are currently limited in where we can go and what we can do as a family. Shannon doesn’t like grocery shopping (shopping of any kind can be cause for a meltdown), attending her brothers’ sporting events, or going to restaurants. This makes doing things as a family very hard. Her dog will be trained to accompany us to malls, restaurants, sporting events, movie theaters, etc. The mere presence of the dog will have a calming effect on Shannon.
Safety: Shannon seems to think that “the other side of the door” holds something better. This instinct makes her a constant flight risk. She checks doors every few minutes in hopes that someone has left them unlocked so she can make her get away - which is very dangerous.
Shannon has no sense of danger so she does not know to stay out of streets, to remain in our yard, or within sight distance of us when we are out. If given the chance, she will run and not look back. For this reason we have asked that Shannon’s dog be trained to track, search and rescue. Although we will maintain our current precautions a dog will give us peace of mind; if Shannon were to get out, her dog would find her.
Behavior Interference: Shannon exhibits many inappropriate behaviors such as climbing, removing her clothing, and helping herself to food at inappropriate times (often from other people’s plates.) Her dog will be trained to interfere with these behaviors. The dog will also be trained to discourage some behaviors that threaten her safety, such as climbing on furniture, touching hot surfaces, pulling down TVs and computer monitors and turning on hot bath water after climbing in the tub. Instead of her family constantly redirecting her and scolding her, her dog will nudge her until she stops the behavior.
Sleep: Shannon has a hard time staying asleep. It is not unusual for her to wake up at 2 or 3 am and not go back to sleep until the following evening. We are hoping that having her dog in the bedroom with her will give Shannon the assurance that she is not alone and she will fall back to sleep.
Diagnosis: Shannon was diagnosed with Phelan-McDermid Syndrome (a deletion of the 22q13 chromosome, containing 42 genes) when she was 6 months old. At the time there were 35 known cases of the syndrome in the world. Due to improved technology the diagnosis of the syndrome has become much easier and there are now over 450 known cases in the world.
Although this seems like a very rare condition it is likely that there are many more cases that have been misdiagnosed as Autism Syndrome Disorder (ASD), Angleman’s Syndrome, Fragile X Syndrome and several other similar syndromes. Since the characteristics of Phelan-McDermid Syndrome are very similar to that of ASD many teaching techniques and therapies that are effective with persons with ASD work with our children as well. To learn more about Phelan-McDermid Syndrome you can go to http://www.22q13.org/home.html.
Note: I highly endorse 4 Paws for Ability as a source for extremely well-trained service dogs. The organization is sound and its goals exceptional. Judy Vorfeld.
June 29th, 2010 at 3:45 am
Our grandson, Carter, was recently diagnosed with 22q13 deletion. He is 17 months old, and absolutely precious. Like your sweet baby girl, his smile with melt your heart. Our daughter and son-in-law are still not ready to reach out, but my husband and I are searching for answers and advice, for us and for them when they are ready for the support. “Carter Bear”, as I call him, is such a wonderful baby, but we are really having trouble with biting. He can’t seem to help himself. Most of the time, if anyone holds him or gets close enough, he will try to bite. He can’t put anything in his mouth on his own yet, so he can’t chew on a toy. He doesn’t like it if we try to put something in his mouth to chew. He wants skin. I usually dodge his bites with kisses, which by the way, I have noticed him smiling-actually smirking just a little-when we play this game. My daughter tries to be firm, sometimes sits him away from her and tells him “no bite”, but it doesn’t seem to help much. I know it is wearing her out. If you have any advice, we would love to hear from you. Or, if you could just offer a shoulder to lean on. I am learning that we, families of these sweet babies, need one another for support.