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SATURDAY, Feb. 9 (HealthDay News) — Children with autism are five times more likely than other kids to have feeding issues, such as being especially picky eaters or having ritualistic behaviors or extreme tantrums during meals, new research finds.

via Don’t Overlook Eating Issues Tied to Autism, Study Warns – US News and World Report.

This was very true of Rob. He had sensory issues with eating, mostly due to texture and smell, and tended to tantrum at the table and refuse to eat. My husband got so frustrated that at times he was tempted to try to force Rob to eat, which of course never went well. We ended up seeing a feeding specialist who gave us the following suggestions.

Outside of mealtimes:

  1. become aware of what kinds of tastes/smells/textures your child prefers or can tolerate, and any that he really can’t stand.
  2. Work on his tolerating stimulation in the mouth: give him drinks with a straw to work the sucking/swallowing muscles. Chewing gum helps too (avoid strong flavors at first).
  3. If toothbrushing is a problem, try rubbing his gums instead (or having him rub them) with a cloth. Sometimes the interest in an electric toothbrush or waterpic will outweigh the annoyance of the sensations. Some kids can’t tolerate the strong peppermint taste of toothpaste; try other flavors.
  4. Get him to try a tongue scraper (let him use it himself) so he can try to learn to tolerate stimulation without inducing the gag reflex.
  5. Try new taste challenges away from the dinner table, so the social pressure to behave well is removed. Remember it takes NT kids several times to acquire a taste for a food; it may take even longer for our kids.

 

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But that’s the problem with this whole autism business; we want precisely what is not available to us — something definitive, like a cause, a cure. Enough, already, with the ambiguities, the gray zones.

 

Still, it was definitiveness that was worrying me when I began reading “The Kids Who Beat Autism,” Ruth Padawer’s cover story in the Aug. 3rd New York Times Magazine. Mainly, I didn’t want to discover all the things my wife, Cynthia, and I could have done and didn’t. That thought keeps me up enough nights as it is.

via The Kids Who Don’t Beat Autism – NYTimes.com.

Joel Yanofsky’s reaction to the recent New York Times Magazine article on The Kids Who Beat Autism strikes a chord within me, the familiar angst among parents of autistic children: Could we have done better? Did we miss something that could have helped? What if we didn’t have the time/resources/energy to do ABA (something that did not become widespread until later)? Could our child have been among the approximately 10% who “recover” from autism??

Some people would say that Rob is among that 10%. He is certainly “indistinguishable” from the non-autistic population in casual interaction, but he has some social deficits that become more obvious in extended and/or repeated interactions, and that affect his ability to hold certain types of jobs. Could any of this have been helped if he had been diagnosed earlier, and if he had been given intensive ABA treatment? It is hard to say. We feel fortunate that he is highly functional. But I would not say that he has outgrown, recovered from or “beat” his autism. The ambiguity of the diagnosis makes it difficult to assess his recovery.

Rob was not diagnosed until about two months before his sixth birthday. He was not withdrawn into his own little world so much, as he was hyperactive, aggressive, destructive, obsessive, and socially inept in our world. He was verbal, could make eye contact (although he didn’t like to), and we were more concerned about his aggression and destruction than anything else. We concentrated on intensive sensory integration therapy, and the therapies through his school: speech therapy, physical therapy, social skills training, behavior therapy (although not as intensive as ABA).

Rob still has fine motor issues that are very particular (he is a graphic designer, and can draw using a mouse; but not a pencil or pen; his writing is still pretty illegible, even his printing). His gross motor skills are excellent, and he is very athletic. He is intelligent and highly verbal, but still finds social interaction to be stressful. He tends to go into social or psychological “defense mode” easily, still; but at least it is no longer accompanied by physical defense mode as well. He has had some success in community college. He has had some success in work, along with some failures.

If we had to do it over again we would certainly have tried ABA if he had been diagnosed young enough. I think by age six it may have been too late, however. For Rob, I still think the best thing was the sensory integration therapy, because until those issues were addressed it would have been difficult for him to focus on anything else. But I am not an expert, only a parent who tried to do her best in a highly ambiguous situation.

\’Mr. Spock goes to church\’: How one Christian copes with Asperger\’s syndrome – CNN Belief Blog – CNN.com Blogs.

This sounds very much like the experience of Rob. We were in church a lot when he was growing up, and as of now he is an agnostic, because he says he has never had a “spiritual experience.” I can just imagine what most church services look like to someone who doesn’t really get the emotion or sense of belongingness of church. But I really like how this guy has come to embrace what is really the important part of church: Jesus, and his simple truth: Love God, and love your neighbor.

Grandpa’s Age Linked To Autism – Forbes.

Grandfathers older than 50 linked to autism risk. My maternal grandfather had 12+ children; my mother was #12. So he must have been older, close to 50 anyway, although I don’t know his exact age when my mother was born. Moreover, I know nothing about my paternal side of the family.  My twin brother is most likely an Aspie.

I don’t know that this explains Rob’s case though, since neither of his grandfathers were old: my father was 32, and my husband’s father in his 20’s, when we each were born.

Some With Autism Diagnosis Can Recover, Study Finds – NYTimes.com.

I will comment more on this as I have time. But I know that the ones that “recover” are certainly not spontaneous: they take many, many hours of therapy and other treatments.

12 Best Special Needs Apps of 2012 – Special Education.

These apps look great. I have used Dragon Dictation and it does work very well. I will have to explore the others.

This is the program we sent Rob to. The Arches program was wonderful.

 

Copper Hills Youth Center

5899 West Rivendell Drive

West Jordan, UT 84088

801-561-3377 800-776-7116

Website: http://www.copperhillsyouthcenter.com

Copper Hills Youth Center is a 126-bed private adolescent residential treatment center for teenagers 12 – 17 years of age. Programs and services offered include: boys residential treatment, girls residential treatment, day treatment and Arches – a program for individuals with Asperger syndrome.

via Autism Residential Programs | Utah Parent Center.

 

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