Profile of Simon C
Profile Date: 2009 at the time of the profile, Simon was 18 years old.Filled Out By: His mom.
3 people he loves most in the world He most loves his mom, dad, Aunt Sally, some school staff and camp counselors.
3 activities he loves most He loves to attend live concerts and plays, (particularly if there is music), dance; going to parties; watching movies and certain cartoons, and swimming. He loves interactive toys, books and horses.
Does he have siblings? What are their ages? No.
Describe his personality as an infant. As an infant, Simon was very sweet and smiley, rarely cried, extremely enthusiastic and loving/super hyper - always fell asleep in the middle of playing, sometimes with hand still in air.
Has his personality changed over time? Over time, he has more worries and more frustrations, so he shows his serious side more, but he's still very loving and sweet. He is still a very determined communicator, using many strategies. Simon is such a lovely person, interested in many things, a real people-lover, quite smart in many ways. His greatest fear is to be excluded.
At what age did he sit up? Crawl? Walk? He missed early major milestones but walks very well now. He sat up around 7 months, crawled before that, and could pull to a stand and cruise for a couple years before he finally walked alone, at the age of 3. He's a fast runner, can walk backwards well, can walk for miles, and is pretty good on difficult terrains. His balance has improved immeasurably since he was young. We do nature obstacle courses with him, over river stones, over fallen trees, stepping over narrow streams, going under low boughs - he loves it.
How does he prefer to communicate? He had a definite "lost words syndrome" and spoke around 30 word/word approximations. Many were never repeated, several hung on a while, and the last one "mama" disappeared around age 11. He is able to say it occasionally. He has his own signs, we were steered away from sign language for him, which I believe was a mistake. He is quite adept with PECS and other picture systems, with and without voice output. He has a dynamic screen device that is not very easy for him to access, however, he is able to go through several screens to get what he wants if he's motivated enough. We are in search of something better. Building a comprehensive communication system is a daunting task, but there is none more important.
When other methods aren't available, he sometimes still grabs, When he's calm and isn't anxious about not being able to communicate, he's such a delight and can be very polite about asking. He's very good at eye contact, leading and bringing you actual items in case you didn't catch the request another way.
Has he ever used a communication device? What kind? Is it meaningful to him? Does he use it without prompting? He has used several. At home, for the dinner table, he uses a GoTalk 9. He uses it without prompting, and will use his icons also without prompting. If he needs prompting, he gets back on track quickly. He had a Chat PC 2, (on a pocket PC platform) which is a nice little thing but for his fine motor skill level, it was never a good match. It also broke frequently. We are trialing some DynaVox devices starting next week, through his school.
Which therapy has he most loved? What made it fun? He used to love swimming above all, then later became more interested in riding horses. He still loves horses but will sometimes refuse to ride, which I connect with his surgery for turned-in foot and later a broken knee. We will be trying again this year. He has always enjoyed communication therapy if he had a good therapist. Some have been wonderfully creative, inventing interactive computer games just for his likes and motor skills, and have had him asking for 'real" activities as well, so that he could ask electronically, and also give commands for what the other person would do. Again, if he's had a good OT, he's enjoyed that - learning to unscrew bottles, turn on the water and wash his hands or orient the cup under the faucet for a drink and other practical things he obviously wanted to learn. He loved water therapy after his broken knee last year. Can't think of any others right now, but want to make the point that he enjoys learning and enjoys people, so if you have the right people teaching the right things - he makes fantastic progress and loves it.
Which therapy has he liked the least? What made it bad? Again, it's the people. If he feels forced, or bored, or the person doesn't tune in to him, he will not like anything. He doesn't do things just because you ask him to. He will try just about anything, so you have a chance to teach him many things. Making it interesting is the challenge of the therapist or teacher.
Does he attend school or a daily program? Simon goes to school 5 days a week. He leaves for school on the bus at 8:30 and returns home at 3:00 pm.
Does he enjoy school/his daily program? What does he enjoy most? What does he enjoy least? He loves school because he loves the people. Staff turnover is difficult for him, because he misses people, but he has no trouble accepting new people. They have a community outing every day, he likes that, he loves the weekly swim at the YMCA, he likes this speech therapist and her classes. He likes variety in the lessons. I found out they were using the same pictures for over 6 months in one class, and he was so bored he was acting out. He likes routines, but with changing materials. He also doesn't like being pushed around - some people working with DD people think they have that right. But with Simon it really backfires on them.
Is he involved in any extracurricular activities? He was involved with KEENusa for a couple of years, but it's very limited here (smallest space of any KEEN program) centered around a small gym, so he lost interest. Simon goes to camp every year, this year he went to sleepaway camps in June, July and August. (overnight camps that last for 4 to 6 days). He truly loves to go to camp, it's freeing for him and he loves the activities and the counselors. We go to a yearly 3-day family camp, (for families with disabilities) which he also loves. This is a camp that recruits college students to volunteer for the weekend, they have scheduled activities for the kids while the parents go to classes, rest and socialize. There is also family time, to swim or do other activities, boating, walks, etc. All meals are provided in the community center, and it's a great family experience. We've been going to that camp for 7 years now.
In the past, he's participated in Little League (challenger team) and AYSO soccer (they have a special needs group). He much preferred the baseball, which is more of a turn-taking sport. With soccer, he didn't like all the kids running around him. He also has had regular horseback riding for several years, but had to drop out due to surgery and a broken knee (2006 and 2007 respectively). He's also been involved with Special Olympics aquatics but they had issues with not enough volunteers so he quit. He is now not so excited about cold water pools unless it's warm weather. He prefers his therapeutic swim class in the warm pool.
After school, we do walks or visit kid-friendly museums or zoo in summer. In winter it gets dark early, so he's limited in outside activities. He loves his TV a little too much.
There isn't much social opportunity here after school, and I'm working hard at creating an after school program thru ARC.
Where does he live? We have built a separate apartment for him attached to our house, and Simon is in a partial supported living situation. He sleeps in his apartment 5 nights a week, and eats dinner there 3 nights a week. The rest of the time he's home with us. Finding full time staff has been difficult.
What is a typical night of sleep like for him? He generally sleeps through the night. If he needs to go to the bathroom he may get up and ask for help, but goes back to bed right away. We find melatonin essential - 1 mg. sublingual at bedtime.
Does he have seizures? What age did they appear? Are they controlled with medications? The seizures were very bad pre-puberty. They snowballed from petit mals to several types of partial and generalized seizures. We luckily found the right drug (felbamate - a low dose) which controlled through that period. Now the epilepsy is not a big issue. He has occasional petit mals, which correlate with being ill or having an infection. He hasn't had a grand mal seizure in several years. He also takes clonazapam, since age 2.
What do the seizures look like? Have they changed over time? At age 2 he received the epilepsy diagnosis, was ill with fever and had 2 grand mals and was hospitalized. He was put on klonopin (after trying several other things that exacerbated things). He was prone to staring spells, the major type. Later, around 8, he started having more and longer seizures and was put on Depakote. This made everything so much worse and the types of seizures proliferated until he got a diagnosis of Lennox Gastaut Syndrome. He had at least 7 types of seizures, culminating in total drops. Just as we were getting him a helmet, we switched neurologists and he went on Lamictal. That helped, but only a few months. Then the doc convinced me to get him on felbamate, and that truly saved his life. Even though it's been about 9 years, his dose has decreased and is quite small.
What medications is he on and why? Clonazapam and felbamate for seizures.
Does he have any medical issues related to AS such as reflux, g-tube, etc.? He had fairly bad reflux until he walked, at age 3, exactly as his pediatrician predicted. Seizures. Difficulty controlling body temps in extreme weather conditions.
Cavus foot that required surgery to straighten.
Does he have any medical issues that are probably not related to AS such as asthma, allergies, etc.? He gets intermittent eczema or psoriasis, mostly on his feet and head. Fish oil supplements are very helpful for that. He had an orchiopexy around age 8.
What is your child's genotype? When was he diagnosed? Deletion positive. Formally diagnosed at age 10 via methylation test, then the FISH test confirming the deletion was done one year later.
Please share a piece of advice that was most helpful to you regarding your child. Don't hold dad to your standards - it's ok for dad to hang around and watch football with him sometimes, and just do dad things. Most dads are not as detail-oriented as mothers. Every moment doesn't have to be a teaching moment. Your child mostly just wants you to be present, and be yourself and not always be caught up in the roles of teacher/therapist. Your child doesn't want to be fixed - he just wants you to love him.
What is the most important thing you wish others knew about your child? He's a treasure just as he is. He is smart and doesn't want to be talked to like a baby. He has his own strengths and weaknesses, like everyone. He wants to be accepted. He doesn't want to be pushed around or counted out.
If there is one thing you wished someone had told you earlier that you would like to share, what would it be? This I get asked constantly by parents with younger angels.
My answer is:
1) Focus on daily living skills EARLY, don't wait until the child is big to teach him how to pull up/down his pants or how to climb into the car seat. PT and OT should be about helping your child learn to do very practical things for himself.
2) Focus on communication always. Communication using icons should always be labeled with words, as this is a way to teach reading sight words. I believe reading is the most important academic skill. Teach conversation and not just "I want this, I want that."
3) Teach social skills. Use the communication for social commenting and feelings as well as requesting items and activities. Nurture friendships very early, friends are precious and hard to come by as children with disabilities age.
These are the 3 biggest issues as your child grows, yet in IEPs they can really waste your child's time with non-essentials.
Do not be lenient when they are bratty. Do not give things because you feel sorry for the child. Teach manners, like asking appropriately. (Do not reward headlocks, biting, and other obnoxious behaviors and don't let anyone else! What's cute as a baby is a huge crisis when they're big and strong). Provide communication methods, try everything.
Teach to their interests and don't force your curriculum if it's not tailored to their interests.
Feed the kid well! Don't wait until they're 2 to introduce vegetables. Kids like familiar foods, make healthy foods familiar from the beginning. Don't do the sugar thing - besides health problems, taking care of their teeth can be a big, big challenge.
