Profile of Delaney VB
Profile Date: 2009 - At the time of the profile, Delaney was seven years old.Filled Out By: Her mom.
3 people she loves most in the world
It's hard to pick just three people! Delaney LOVES her Grandparents, Aunt and Cousin! Of course she also LOVES her Mom, Dad, and brother Sean, but then again, I think that Delaney truly LOVES everyone she meets!!
3 activities she loves most
Delaney loves to swim, watch movies (Barney, Disney Sing Alongs) and doing "school work" (sitting at the table and coloring, doodling with a pencil or pen, looking at flashcards, etc.) play outside, ride her Skitter Toy, play ball
3 things she loves most
Delaney loves Little Debbie snacks, school, and going shopping with Mom and waving at everyone who goes by - everyone is a "friend"!
Does she have siblings? What are their ages?
Delaney has an older brother, Sean, who is 13 years old. I know they are not siblings, but Delaney thinks of her dog, Buddy, as her big brother also.
Describe her personality as an infant
Delaney was always a very calm/mellow infant, but she was extremely fussy from around 7pm - 10 pm every night between 1 week old to 6 weeks old. At 6 weeks of age, Delaney was hospitalized for "failure to thrive" and had low blood sugar problems. She was hooked up to all kinds of wires, machines, etc, so it was really hard to hold her much and she definitely became a much easier baby after that. I think that this is because she learned to soothe and calm herself while in the hospital.
Has her personality changed over time?
Delaney is still pretty laid back as a child, but very "busy". She is very active and gets into more things as she is walking and running and can now reach almost any cabinet in our house. She is pretty good about knowing and respecting her limits and really has not been much of a problem as to safety and security in the home. She is pretty conservative and respects and stays away from situations that are dangerous. I do think that her attention span is getting better as she gets older though!
At what age did she sit up? Crawl? Walk?
Delaney walks and/or runs everywhere! She sat up by herself if you placed her in the sitting position at 8 months of age and she was able to get to the sitting position independently at 13 months. She commando crawled at 16 months and then crawled on all fours at 20 months. Delaney pushed a toy shopping cart to walk with at 21 months and then walked independently at 26 months - a month prior to her AS diagnosis so we have always felt that she set the bar/standard very high for herself!
How does she prefer to communicate?
Currently, Delaney uses a DynaVox MT4 for communication. It has 16 buttons available to her on each "page" and she probably has over 100 pages for her to access (and she uses them all) at this time! Delaney also uses a lot of gestures, about 15-20 signs, and two words to communicate with (mama and bubba). Delaney said her first word "mama" at 4 years old. She then said "bubba - for her brother Sean and for the dog Buddy" at 4.2 years of age. She has made various sounds over time such as the mmmmm sound for more, but not consistently. She also uses the mmmm sound for singing and will hum along with a song.
Has s/he ever used a communication device? What kind? Is it meaningful to her, does she use it without prompting?
Delaney has used a number of different devices for communication over the years. She started using a HipTalker at age two. This worked well for her at that time and was great for socialization. It had 4 buttons on it and she used it pretty functionally for greetings, farewells and to ask "Can I play?" for example. Once Delaney started attending Scottish Rites Preschool (Speech and Language program which focuses on AAC) they started her on a 7 level Communication Builder. Again, this worked well and it had 8 buttons for her to use, but it was very difficult changing out overlays throughout the day for her to use in specific settings - snack time, circle time, free play, etc. She used the Communication Builder from about 3 - 4 years of age. Right before Delaney turned 4, Scottish Rites introduced her to the DynaVox MT4. This was life changing for Delaney, our family and her school! I would have never dreamed that Delaney would be able to access and move from page to page trying to find what she wants to say, but she does! She will go through 4 or 5 screens or more sometimes to find what she wants to say!! Delaney uses the DynaVox throughout the school day. She uses it to communicate with her peers and teachers by asking questions, commenting and playing games. She also uses the device for "work" activities - matching or naming numbers, letters, colors, book talks, literacy, etc. We LOVE the DynaVox and the voice it gives her!
Which therapy has she most loved? What made it fun?
Delaney loves going to HippoTherapy, gymnastics class and dance class. Granted, these activities (other than HippoTherapy) are not "therapy" and I think that is why she likes them so much!!
Which therapy did she most dislike? What made it bad?
As an infant/toddler, Delaney hated physical therapy. She hated to be on her tummy and when the physical therapist would come to the house, I think she knew that the therapist would make her get on her tummy and she would choose to "shut down" and fall asleep. We spent a lot of time and money on "therapy" OT, PT, and Speech - when Delaney was younger. It was so stressful getting her to and from the appointments and keeping up with Sean's activities, sports practices, etc. Delaney seemed to make the most progress and learn the most from her brother - he got her to sit up by herself, take her first steps and learn how to throw and kick a ball. Sean has been an exceptional big brother for Delaney and has had the determination and patience to help her excel - when he was much younger and was told that Delaney most likely would not talk, he replied that he would teach her! We figured out after a long time of doing therapy, that Delaney got just as much "therapy" by attending "typical" activities like her peers - dance, gymnastics, soccer, etc. She enjoyed these activities much more than she ever enjoyed therapy sessions and we saved a ton of money!!
Does she enjoy school? What does she enjoy most? What does she least enjoy?
Delaney LOVES school - being with her peers, the socialization, and structure of the classroom. She has been fully included in a regular classroom for Kindergarten, first grade and now second grade. She is rarely pulled out of the regular classroom except for adaptive PE and sometimes extra work with the speech/path. She has a one-on-one paraprofessional (actually several that "share" Delaney), but the para has been instructed to not "hover" and Delaney is pretty independent during the school day. She knows the routine, follows directions well and is often the first to go to the assigned activity, line up for recess, lunch, etc. Probably having to exercise self-control is the one thing she dislikes - last year she had to go to the "think chair" for eating an M&M that they were using for a math/counting exercise - but what 6-year old wouldn't!!!.
Is she involved in any extracurricular activities?
Delaney attends a special needs dance and gymnastics class. She also attends Sunday school and church. She has played on a soccer team and is a number #1 fan at all her brother's baseball and football games. She went to a cheerleading clinic last year and "performed" with all the cheerleaders at a local high school football game.
Where does she live?
Delaney lives at home with us. My ideal living situation for Delaney in the future would be for us to buy a duplex/condo and Delaney would live with a "friend" and caregivers in one side of the house and then we would live in the other side. This way we could monitor what is going on with Delaney and be there to help out as needed, but she could have her independence and so could we.
What is a typical night of sleep like for him/her?
I'm embarrassed to admit that Delaney sleeps with me in my bed and that my husband sleeps in Delaney's bed. We have got to get this changed soon, but Delaney sleeps so much better when she is sleeping next to someone. If she is sleeping with me, she will only wake one or two times a night for a few minutes on most nights. It seems like once a month or twice a month maximum, Delaney will decide to have a party early in the morning. She will wake at 1 or 2am and not go back to sleep. I'm never sure if this is because she has a stomach ache, nightmare, or just what??
Does your child have seizures? What age did they appear? Are they controlled with medications? What do the seizures look like? Have they changed over time?
Delaney had an EEG done when she was first diagnosed with AS at 27 months. The EEG showed abnormal spikes and waves and a high likelihood for seizures. The doctor recommended we put her on meds and we declined. Delaney was a new walker at this time and we would notice times that she would stumble, lose her balance, grab the wall or furniture for balance, but at that time we attributed these instances to her newly acquired skill of walking - looking back we now realize that this was probably seizure activity. During these episodes she would quickly recover and always be off and on the go again. Delaney started Lamictal at age 3 years after some definite drop seizures. She still has drop seizures, startle seizures when her arms jerk and fly up in the air. She has also had strange eye blinking seizures. The seizures seem to be controlled by her medicine for the most part, she usually only has breakthrough seizures when she is ill with a sinus infection or UTI.
What medications is she on and why?
Delaney currently takes Lamicatal, Keppra (added at 5 years of age) and Topomax (added last January during a week-long hospital stay for seizure control). Delaney is almost weaned off the Topomax at this time. She also takes Vitamin B6 and an Omega 3 /Fish Oil supplement. Delaney takes Sal-Tropine to help reduce/control her drooling - she has been on this for 2 years now with no problem.
Does she have any medical issues related to AS such as reflux, g-tube, etc?
Delaney had severe reflux as an infant which probably caused the "failure to thrive" diagnosis at 6 weeks of age. She was fed by a NG tube while in the hospital for 2 weeks at 6 weeks of age and then 2 more weeks at home - what a nightmare - the doctors thought she was possibly suffering from a metabolic issue. She had low blood sugar and during one hospital visit had 80+ needle sticks in her heels - another nightmare for us all! Delaney is a very good eater now and is in the 80%-90% range for both height and weight!! Delaney also wears glasses for farsightedness and inserts in her shoes (hotdogs) to help keep her feet from rolling inward.
Does she have any medical issues that are probably not related to AS such as asthma, allergies etc.?
Delaney is pretty healthy overall! She does seem susceptible to UTI's and did have her tonsils and adenoids removed at age 3.
What is your child's genotype? When was she diagnosed?
Delaney is UBE3A. She was diagnosed at 27 months.
Please share a piece of advice that was most helpful to you regarding your child.
Since Delaney was not diagnosed until age 27 months, we had all that time of treating Delaney as a "normal" child and waiting for her to catch up and reach the missed milestones. When I refer to a "normal" child, I am referring to the fact that we took Delaney everywhere and treated her the same as any other child with the same expectations and goals. She attended an excellent in-home daycare and again the same expectations and behavior were expected from Delaney as the other children - to include self-feeding, napping on her own cot and staying on the cot until the lights were turned on, toileting, sitting in time-out if needed, etc.
What is the most important thing you wish others knew about your child?
Delaney is the constant "light" in our lives - her smile is dynamic, her laughter is contagious and her sense of humor is a delight to all who know and love her! Delaney understands everything that is going on in her environment and almost everything that is said to her. She is typically the first one to laugh at any joke or funny story that anyone tells!!
If there is one thing you wished someone had told you earlier that you would like to share, what would it be?
One thing I wish I would have done differently for Delaney is to have sent her to a "regular" preschool versus the school district's special education preschool. Delaney just didn't have very good peer models for language. We did only send her 3 days a week (it was a 5 day a week program) because she was already at a wonderful home daycare with all typical peers and I really wanted her to have as much exposure to typical children as possible. I felt also that the sped preschool with only 8 - 10 children did not prepare her for a Kindergarten classroom with 20+ students in it. It took her a while to adjust to learning how to interact appropriately with all the children and how to sit at the circle, etc.
