Coping with Autism

 If you have managed to find your way here, visit the new site at https://copingwithautism.wordpress.com and check out the latest in our family adventures!

Our youngest, Nathan, was diagnosed very early and has grown by leaps and bounds. If you had asked me over a decade ago which was the worse of the two boys, I would have said that it was Nathan. He was pokey from day one and wasn't interested in a lot things other children were into. He cried at nearly everything, didn't like being held by strangers, didn't like men (including his own father) and did not transition well (at all) and was that way nearly from birth. My poor husband kept saying it was because he hated him or didn't like his skin color (my husband has brown skin). I told him Nathan was too young to know what hate was and there was no reason for him to dislike his father's skin color any more than he could hate someone when he was only a year old. His diagnosis came shortly after his brother's but he was diagnosed early (19 months) and was placed into therapy almost immediately. Nathan has come a long way. Next year, he enters high school and w...

And we're back... I moved everything over to WordPress but then our desktop had severe issues, Peter broke a brand new laptop (insert crying, tears, and lamentations here) and I couldn't really update anything for almost a year. In the process, I somehow lost my rights to the copingwithautism.com URL and now if I want it, I'll have to pay a ridiculous amount of money for it. No, thank you. I'm back to Blogger. A number of things have happened in the last year. Last year, our daughter graduated from high school and we have discovered since that she really should be looked at again by a professional. There are suggestions that she may have mild Asperger's (which I have always suspected but didn't think was necessary to diagnose). It has been an issue since graduation (and her attempt at college last semester) and just "adulting" in general. The boys are doing well. Peter is now in high school and Nathan is set to finish this year mainstreamed and en...

I've finally gotten around to moving the copingwithautism blog over to WordPress. Unlike my politics blog, this is currently a WordPress.com blog. At some point I hope to purchase a web address for it and have it set up for independent hosting but at this point WordPress.com is a start. The new address is copingwithautism.wordpress.com .

I apologize for being far more inconsistent than I thought! The last post here was in February(!) and so much has happened since. Nathan improves daily and we have seen an explosion in speech, pretend play and social skills. We suspect that he will always have some autistic characteristics but he is doing very well. Peter is improving too! While his speech abilities are still on the level of a maybe a 2-year old, he is using pronouns correctly about 75 percent of the time and he is beginning to use adjectives in describing things such as, "I want water, cold water. I want cold water." (This was a request just from this week.) We also went to Disney World again this year and I will post more on this later today or tomorrow. Nathan's birthday is Monday and I want to write more about how excited he is about this as well as his requests for toys and such for his birthday presents.

I'm hoping that over the next few weeks I will be able to convert this blog to a WordPress Blog also. I did that with my politics blog and love what I am able to do in WordPress. If I am able to do the update, this blog with stay up for at least a year to redirect everyone to the new site.

The spinning top I bought for Peter was a huge hit but it couldn't hold up to his abuse and was destroyed inside of a week. He kept it around as long as he could but when it fell apart, it was basically shaped sheet metal so there were sharp edges that prevented us from keeping it past a certain point of destruction. But Peter did love it. Nathan, of course, loved just about everything he received. The light saber/swords I bought broke within the first week also but the boys continued to play with them anyway. Nathan loved a put-it-together-yourself Handy Manny toy and still carries it around from time to time. Nathan's newest obsession is R2-D2. I bought them the LEGO Star Wars game for the Wii for Christmas and Nathan is head over tails for R2-D2. Now he wants R2-D2 this and R2-D2 that. He even wants to build one a life-size working robot (uh, no, not happening--too expensive).

More evidence is coming out about Oxytocin as a possible treatment for autism. I don't want to use the word "cure" because I think a healthy dose of optimism should be tempered with a healthy dose of caution. The Washington Post reported on the story today. Oxytocin is also known as the pleasure hormone because we release under certain cirmcumstances. It's also released by a mother's body during delivery because it causes muscle contractions. I think for some children it could be a great help. I know my son Peter engages in all kinds of stimming activities and if we could calm those down and get him to focus, he is capable of so much more. He's already reading and doing well in school. His teachers and therapists all agree that his speech and focus are his biggest challenges. Oxytocin has the potential to help with eye contact and possibly even stimming. There is hope!

Mmmm... this is always a challenge. Nathan is getting easier to buy for. We have seen such an improvement in him it is astonishing. He still over-focuses, hand-flaps and has speech problems but he's interacting with others, playing, starting conversations, etc. It's fantastic! Nathan is getting cars, a "light saber" that lights up and Play-Doh. Peter as always is so much more difficult to buy for--he wanted books this year since he is reading but I'm not sure he will enjoy them as much as I would hope he would. I did find a choral spinning top at a Tuesday Morning store. It's big, about eight inches across and as you spin it (ah, spinning--what a wonderful thing for an autistic child!) it "hums" in chords. It's great and I think he will love it. They received other things as well but we'll see what happens tomorrow. I'll let you all know what the hits were.

Doctors at Duke University have found a connection between autism and the body's ability to recognize and utilize the hormone Oxytocin. Check out the story at Science Daily .

I've been meaning to write this for quite some time. We did well in Disney World and it was due to a few things: 1. For every child with autism, you need at least one parent, grandparent, aunt, etc. to help corral or monitor where each child is and what they are doing. 2. Get a letter from your child's doctor stipulating that he or she has autism. As soon as you enter the park, go to guest services and let them know that you need a Guest Pass for your child. This pass allows your child to go into the express/fast pass line or the disability line for nearly all of the rides. The pass allows for five other guests to ride the ride with the person who has the disability. We had two letters and two passes which allowed us to have as many as twelve people enter the express/fast pass line. The child with the disability has to be with the group entering the fast pass lane. Disney cast members will check for the Guest pass. At first we didn't think we would need the Guest pass beca...

I have strongly felt that there was a genetic link for autism but the focus on immunizations seemed to take the focus off of this kind of research. Today, U.S. News and World Report is reporting that scientists have found that an error on a gene may be related to autism. Scientists studied the DNA of families of those with autism, those with autism and then a control group of people without autism. They found a significant difference. In our family alone we have two with autism and one with ADHD. My husband is suspected of having had PDD-NOS as a child. We have a niece on the autism spectrum as well. I have no doubt that there is a genetic link--the question we face now is what are we going to do about it?

Education World® : School Issues and Education News: Sports Offer Autistic Kids Physical, Social Benefits Shared via AddThis

I received an e-mail from the father of a child with autism and he has written a book about dealing with autism the first year after diagnosis. The website is Same Child, Different Day (I love the title--it fits so well.) Excellent idea, I thought of doing something similar and had not heard of his book until now. Now that I have, I am going to put it out there for anyone needing to know what it's like to deal with all the surprises following an autism diagnosis. Jon's e-mail reminded me that I have neglected this blog dreadfully and plan on updating it very soon. We went to Disney World for vacation for the first time with the boys this summer and I have tips and suggestions for making the every day run smoothly (always a plus!).

MSNBC posted this article yesterday on the cost of health care and related services to families dealing with autism.

Okay, I've gone back to work-- teaching (what was I thinking!)-- and the kids are all in school. Peter is doing well mainstreamed. He is based out of an autism classroom and he and couple of other kids from his class spend nearly all day in a regular kindergarten class with a paraeducator. Peter has surprised his teachers by knowing his numbers, shapes and letters. He has also surprised them by knowing how to write his name. Communication skills are still not great but hey, every little bit helps! Nathan is doing well. He is in a reverse class at the public school. They are trying to see if they can move him into a regular kindergarten class next year. He's three days a week there and two days at the private school my daughter attends and where I teach. He's doing very well in both places and everyone thinks my little stinker is a joy (go figure-- he is a cutie but he can be a stinker too!) All in all, we doing okay so far.

Today, we went to the University of Virginia's Child Psychology Department to do a quick computer test for an experiment they are conducting with autistic children. The test consisted of alternating screens of nine pictures-- eight of different kinds of frogs and one of a snake. The boys were asked to identify the snake on each screen. Then the pictures would shuffle changing their location on the screen and the type of snake shown. Nathan decided he didn't want to do it after a couple of screeens. Peter was able to complete the experiment but every three screens was rewarded with being able to open and close the door to the room (he was very stressed by the new location and opened and closed doors repeatedly when we got there). Peter got a few screens wrong and instead of a snake picked a frog. But I noticed that he was trying to do the screens really fast and some of the frog colors (particularly red) resembled the pictures of the snakes with the same colors if you just glanc...

I think we have figured out what has caused Peter to become obsessive over doors. While we were on vacation last week, he was especially bad about opening and closing doors. And family members I thought were accustomed to his "oddities" repeatedly asked him to stop. That like trying to repair a dam with a tube of Elmer's Glue. It's NOT going to happen. Other family members, who see him infreqently because of distance, were even more bothered by Peter and Nathan's tendencies. Needless to say, I was stressed out and dealing with ulcer symptoms every night for most of the week. My husband and I are discussing alternatives for next year. Obviously, vacationing with family in the same house will not work any longer and, while this is a sad, our obligation is to keep our sons safe and calm. But because of the stressful week, we noticed when we returned that Peter wasn't as obsessive over door opening and closing. I think he resorts to it for two reasons: first, out ...

We're having some serious issues with Peter's latest stimming technique. Opening and closing doors repeatedly has gotten not only extremely annoying but also distracting for Peter. He's not focusing as well as he was--he would rather open and close a door. If you can get him to focus, he's using more complete sentences and giving more information when he does speak. It's getting him to focus that's causing the biggest problem. I feel like I did when he became obsessive over the computer. Problem is I could turn the computer off-- I can't take all the doors off their hinges! Argh!!

I'm starting a new job in the fall and I've been frantically trying to keep up with my political blog, my writing and the boys while preparing for the job. I'll be teaching at my daughter's school (it's a private school although I am required to apply for certification) and working on my writing still. I will try to keep up with my blogs.