A Dad's Journey

Father of Autistic Twins Speaks Out

Every year I take a golfing vacation with a few old college buddies.  The time is spent women free, and typically revolves around sports, drinking and loud music.

I’m spending this weekend with the boys while their mother is in Bermuda with my daughter and mother-in-law.  Surprisingly enough, the experience has brought back memories of my Mancations.

1st of all, Sean only watches sports or music concerts, preferably rock and roll concerts.  Michael is constantly making strange smorgasbords of meals (e.g. peanut butter, bacon, Mexican cheese and pizza).   Of course, he is listening to his tunes the entire time.  We’ve spent a good part of the weekend visiting our neighbor’s pool.  The boys who are incapable of getting ready for the school bus in under an hour are able to be ready for a visit to the pool within 60 seconds.

While I think of their autism as an excuse, it just comes down to motivation.

As for myself, I’ve allowed myself a few (well maybe more than a few) adult beverages during this Mancation.  All in all, we’ve down well together.  With the exception of bedtime, when they both want me to lie next to them at the same moment.  As for how that went last night, that’s where the adult beverages the next day come in, to just soothe and forget.

Two solo nights in the books and two more to follow.  Not much in the way of other guests and visitors, they usually cause more trouble than help, with the exception of my sister who came with me today for the boys baseball trophy day (last day of Challenger Baseball).

I have learned four things from this Mancation

1) Michael is much smarter than I have given him credit for.

2) Michael cannot, under any circumstance, be trusted alone for more than five minutes.  As for the reason, review learning # 1

3) Sean’s OCD issues need to be dealt with, either via therapy or medication, but they are beginning to consume him.

4) Finally, we need a new sleeping arrangement.  But I need a couple of days to recover from this latest solo sojourn before I”m ready to implement that.

The Best Day Group of New Jersey held a surfing event and overall fun day for kids with disabilities yesterday in Long Branch, NJ.

We signed up Michael and Sean for it.  Michael got as far as his wet suit, took one look at the kids getting pulled into the ocean on a surf board and then settled into his beach chair.  That was as far as he was willing to go.

Sean is the one with the most tactile concerns.  He hates things pressing tightly against him.  But he was so motivated to get out into the ocean that he accepted the wetsuit without a concern.  The only thing he required was having his bathing suit tucked in so it wasn’t bunching up.

We then waited close to an hour for our turn.  Never have I seen Sean wait so long for something and stay happy the entire time.   We killed the time by splashing near the water’s edge and were only warned to move back about three times.

Finally, it was Sean’s turn!  And what happened?  He refused to get on the board in the required way, which was facing down and backwards to the ocean.  He wanted to go out on his knees and facing the ocean.   Finally, we all realized this was the only way this was going to work for him.   The five “surfin dudes” who worked with Sean were nothing short of fantastic.  They obliged him, even if it meant bending the rules.  OK, out into the ocean they go and they catch a pretty good size wave.

What does Sean do?  He stands up on the board, with the biggest grin you ever saw.  Now the guys are still all around him and have him by the feet and knees to keep him steady.  But they all got the biggest kick out of Sean wanting to ride the surfboard like he had seen others do it.

All in all, a great experience and I hope to embed the video once I get it off my camera and download it to YouTube!

http://www.bestdayfoundation.org/

Probably not enough time/attention is placed on the impact autism has on the other siblings.  Often, the other siblings may have a touch of the “aut” as well but are considerably higher functioning.  Trying to keep their lives reasonably sane become a major priority for the parents.  As if they don’t have enough on their plates already.

This article is about a caring/gifted sibling who is trying to raise awareness for the siblings of autistic children.  They certainly deserve all the attention we can provide.

No great revelation to us parents, but once the general population realizes they’re going to have start footing the bill, maybe we’ll see a greater priority from Big Pharma.   The article cites an “an 846 percent growth since 1997.”  I’m sure the CDC will continue to attribute that to better diagnoses.

In an unrelated matter, the CDC refuses to acknowledge that days have been getting longer since Dec 21.  It attributes the “apparent” increase in daylight to a better diagnosis of the sun’s effects.

http://voices.washingtonpost.com/virginiapolitics/2010/05/fairfax_autism_not_baby_boomer.html

I’ve always felt that Dr. Greenspan was a true pioneer in developmental autism treatments.  This video shows some of his strategy of breaking into the world of autism and then interacting with the child.

Dr. Sidney Greenspan on Floor Time

This is from US News & World Report.  I assume they’re referring to the parents as I don’t think the autistic children have taken it upon themselves to seek out their own alternative treatment.

What this points out to me is the continuing desperation of the autistic parent and the willingness to try anything that might work.    We had Michael & Sean on the GF/CF diet for a couple of years, but didn’t really notice any different when they went off it it.  Again, I think there might be a 100 triggers to autism, so the chances of your child reacting to a change in diet are remote, but probably worth the experiment.

I’ve been doing this blog for almost five years now and it’s sad to me that the song remains the same; desperate parents looking for something and the main stream medical and pharma industries offering NOTHING!

By Jenifer Goodwin
HealthDay Reporter

SUNDAY, May 2 (HealthDay News) — About one in five children with autism uses alternative treatments to help with the neurodevelopmental disorder, most often a special diet, a new study finds.

http://health.usnews.com/health-news/family-health/brain-and-behavior/articles/2010/05/02/parents-of-autistic-children-turning-to-alternative-treatments.html

Q: What is your advice for parents of children on the autism spectrum?

A: You have to get kids out and expose them to things, but do this without any surprises, so they know what to expect. You have to find skilled mentors to teach them things. For me, it was an aunt, and it was my science teacher. You need to find the things they’re interested in and good at and expand on this. If your child likes to draw trains, broaden it to the station. Where does the train go? Keep broadening it.

Below is an article that appeared yesterday in the LA Times.  It looks at the differences in spectrum severity depending on the age that the autism symptoms develop.  Apparently, children with regressive autism, who start out developing typically and then regress are more likely to have long term severe autism.  Here is a link to the piece in the LA Times as well as the original source material. (The Journal of Autism & Developmental Disorders)

http://latimesblogs.latimes.com/booster_shots/2010/04/autism-symptoms-regression.html

http://www.springerlink.com/content/w466422333j42521/?p=dab1468d1fde464aae0917e6c4dfdb90&pi=5

This article about a Georgia family running through their savings and battling insurance agencies has given me pause.  I don’t feel I’m doing enough for the boys right now.

http://www.ajc.com/news/autism-caught-in-insurance-467437.html

I have focused more on a long term plan because I don’t want to leave them in a situation with no savings to fall back on, but I have done that by cutting out the extra therapy they were receiving from Douglass College Outreach.

As the title says, parents of autistic children need to balance the cost of therapy now against the needs of the future.   I feel that my boys are too comfortable in their cocoons and it will take professional help to bring them out of it.

I guess I still entertain hopes that they will cultivate a savant level skill or heck just find something they really enjoy.

At the end of the day, the hope of the parent never fades.

A rather interesting study.  Time will tell if there’s any teeth to the claims they make.

Research in the FASEB Journal describes discrete epigenetic changes of DNA in a certain subgroup of twins and siblings with autism

A new discovery raises hope that autism may be more easily diagnosed and that its effects may be more reversible than previously thought. In a new study appearing online in The FASEB Journal (http://www.fasebj.org), scientists have identified a way to detect the disorder using blood and have discovered that drugs which affect the methylation state (“DNA tagging”) of genes could reverse autism’s effects. This type of drug is already being used in some cancer treatments.

http://www.eurekalert.org/pub_releases/2010-04/foas-nso040810.php