Ryan is 6 years old and in Comm Class (First Grade) this year. He has made some amazing leaps this year! He is using more words and sentences, and seems to be more interested in what's going on around him, including other kids his age. Woohoo! Ryan loves to swim in our backyard pool, he rides ponies at Spirirhorse in Corinth, he works with his OT and PT buddies every day after school, and he loves to ride the new bike he got from Grapevine Ambucs.
Helpful Information for Ryan Turner
This is a handout that we give to anyone caring for Ryan
Last Updated August 2007
Ryan has a rare genetic syndrome called Duplication 15 Syndrome (previously called Inverted-Duplicated 15 and/or Isodicentric 15.) Ryan has an interstitial duplication of the proximal long arm of chromosome 15 from 11.2-12. In other words, every cell in his body contains a tiny bit of “extra” duplicated DNA material. Some of the characteristics of people with this condition include poor muscle tone (hypotonia), developmental delay, seizure disorders, mental retardation, autistic behaviors, speech/language delay, sensory processing disorders, scoliosis, ADD/ADHD, anxiety disorders, and minor unusual physical features. However, Ryan’s duplicated genetic material is small, and his symptoms thus far seem to be limited to cognitive ability, speech delay, behavior issues and obsessive-compulsive behaviors (OCD). He has not been diagnosed as Autistic, although probably 60 to 80% of children with his syndrome are also diagnosed with Autism at some point in their childhood. Thankfully he does not have seizures, although it is possible that he did as a baby, but Ryan is at risk due to this diagnosis so anyone caring for him needs to beware of this possibility.
Ryan can speak probably several hundred simple words and he can parrot back many more when prompted. In the past year he has begun to form small sentences. He understands much of what is said to him if it is simple, like “come here,” “let’s go,” pick it up,” and “no.” Although, like any child, he sometimes needs to be told “no” over and over and/or needs to be physically stopped form doing the offending behavior. Body language and facial expressions work well with Ryan also, especially when paired with speech. Ryan has never really taken to signing and we don’t try it anymore since his speech is coming along well.
Ryan is 5 years old but appears to be older due to his large size and height, which is unrelated to the chromosome disorder. However, developmentally speaking, he is only about at a 2 year level with his speech, cognitive ability and fine motor skills. He is close to his peers with gross motor activities. Please keep this in mind with regards to expectations for his behavior. Sometimes when he can’t explain what is frustrating him, he will just scream, which is not unusual and happens at least once most every day. His scream is very loud and shrill but it is attention-seeking and we normally don’t respond to it, and instead require him to use words even when he is making a scene.
Also, due to Ryan’s OCD tendencies, sometimes he will get “stuck” in a routine of opening/closing doors or pacing along a wall or table. Usually we let him go through his routine a few times before re-directing to another activity, if possible, since he seems calmer if allowed the chance to do his routine a little bit. Sometimes the routine just isn’t acceptable and Ryan needs to be stopped – this causes a meltdown, and we’ve learned that no amount of hugging, cuddling, talking to, or even spanking will make any difference at that point, and the only option is just to put Ryan in a safe place until he calms down on his own. If we’re at home, we can put him in his room, but if we’re out we have to resort to strapping him in his big-kid stroller or holding him over our shoulders. (So if you see us strapping a big screaming kid into a stroller and he’s yelling “help, help…” no, we aren’t kidnapping him!)
Ryan is an affectionate kid who loves to hug other kids and babies (sometimes too rough – we are working on that!), play chase, hide and seek, swing, slide, bounce balls, etc. Fine-motor activities like coloring or puzzles are not very interesting to him although recently he will play briefly with crayons if encouraged. He loves animals, both real and stuffed, and he loves watching bubbles. His favorite toys at home are trains, trucks with moving parts, toys that have doors to open and close, toys with buttons to push, Clifford, Curious George, Tigger, Elmo, Barney, Leap Frog type toys that speak, and books with simple pictures, flaps and sturdy pages. His all-time favorite game is chase, and he loves it when we “roar” at him while we chase him around the house or yard. We are working on skills like puzzles, naming and recognizing letters, and drawing.
We try to provide Ryan with lots of learning and stimulating experiences as well as a home routine that is consistent and familiar, loving and fun. We try to discipline him as best we can, which is very challenging due to his behaviors and his difficulty with understanding verbal reasoning. We sometimes appear to be overly strict, and sometimes overly permissive, just depending on the situation (we might appear to be either, depending on the moment!) We are always open to answering questions about Ryan and Duplication 15 Syndrome. We hope that this information is helpful to you.
Amy & Jay Turner
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