Wednesday, November 10, 2010

Ryan's Autism Research Study Comes to a Close

Hello Aspierations Blog Pals!

Our youngest son has been participating in a communication study at the Center for Spoken Language Understanding at the Oregon Health & Science University in Beaverton, OR for the past few months.  Almost every Wednesday and occasionally an odd day here and there, our family made the drive from Vancouver, WA to Beaverton, OR for Ryan to participate in various games, testing and interviewing.

Today was Ryan's final session and although it will be nice to have four hours of our Wednesdays back, I am sort of going to miss the travel.  The drive usually took between 45 minutes and an hour, depending on traffic and it gave me, John and Ryan (and sometimes Justin when he was out of school) the chance to talk about a variety of things without the interruption of the phone, the computers, the TV and the inevitable daily noise that tends to invade our office.

Of course I enjoy the opportunity to chat during family walks but lately, with the weather and everyone's varying schedules, it has been a little difficult to get the family together for more than 2 or 3 times a week and when we do, there isn't always a lot of talking going on but I enjoy the company nonetheless.

At any rate, before I digress too far away, I wanted to write a little more about the research.  The study includes children from ages 4 - 8 and includes both typically developing students as well as those on the autism spectrum.  Ryan was the youngest child invited to partake in the study so far and although his young age and some of his communication challenges meant he attended more sessions than older children, we definitely thought it was worth the time for him to participate in this research.

Within the next few days, we should be mailed a packet of information which contains the results of almost all of Ryan's testing and there should be some analysis along with it.  John and I have an appointment next week back in Beaverton when Ryan is in school to meet with most of the doctors and research assistants who worked with him.  It is our opportunity to go over the results in further detail, ask questions and get suggestions on how to help him become more successful.  In talking with a number of the ladies, we would hear consistently what a delight and charming little boy Ryan is and that he has a very good visual memory but that many of his challenges involve being able to sit still, stay engaged and focus.  I know that can be a challenge for any 4 year old but when I was invited in a couple times to assist with helping Ryan regain a "calm body", I saw things that I did not normally see at home.

For example, Ryan often had a very hard time making and keeping eye contact with the researchers. This is actually fairly common with many spectrum children but I hadn't noticed it so much with Ry because at home he has developed very good eye contact with those in our family. When he gets into a different setting with people he does not know, that changes quite a bit as does his fidgeting.

I noticed in the brief time I was allowed in the testing rooms that Ryan had a very difficult time staying seated in his chair during various tasks.  He could still answer questions but oftentimes it was more of a matter of if he would choose to answer them.  Ryan tends to get what his preschool teacher calls "the sillies" and when Ryan is in this mode, even if he knows the answer to a question, he's going to respond with something silly or charming and completely off-topic. This is also unfortunately when he tends to throw out names of various body parts, his favorite being "boobies" and that word that we try to casually brush off in public places as "peanuts".  (Move along folks... there's nothing offensive here to hear!)

I am very interested in the opinions of the people who tested Ryan and will be sure to blog about it next week after we have our meeting.  Apparently the testing that he participated in would have cost us many thousands of dollars if we had to pay for it ourselves. Just the neuropsych portion alone would have set us back quite a bit.  I truly do believe it's worth it to be able to help our son.  The thing about autism... well, one thing at least... is that there are SO many different avenues one can go to try and treat some of the daily life challenges and co-morbidities that autism brings.  Parents out there with spectrum kiddos can probably agree with me that all the options can often be overwhelming.  Gluten-free diet? Dietary supplements and / or medication? Applied Behavioral Analysis (ABA) therapy? OT? PT?  Parents can and do spend a life's savings on this stuff not knowing if any of it will work.

I believe that when considering a therapy, we look at the least invasive option that will provide Ryan or Justin with maximum benefit.  Teaching social and safety skills, learning different physical therapies we can do at home to help with self-regulation (i.e. brushing, joint compressions, dots and squeezies) and addressing individual issues or needs as they come up while trying to prevent other issues is part of our daily plan.  We keep our options open because we want to remove obstacles and help our children be as healthy as they can be.  It is often overwhelming.

With the study that Ryan participated in, it only cost us our time and our gasoline.  Ryan was treated very well and all the researchers were so friendly.  It was such a relief not to have to pay out of pocket.  (This isn't the kind of stuff that Kaiser covers.)

I definitely will follow up with my blog friends regarding the study results.  If there is information that is useful as it relates to my son, it may be useful for your child(ren) as well.

And on another note...

Both boys are off of school tomorrow for Veteran's Day.  Ryan is doing a sleepover in Justin's room tonight although from the noise I currently hear, there isn't much sleeping going on yet!

Justin is going to participate in a special flag ceremony at a local nursing home with the Boy Scouts. I am very proud of him for volunteering for this service. John, Ryan and I are going to attend as well. I'll make sure to take pictures if that is allowed and will tell you more about that event the next time I get a chance to blog.

Happy Veteran's Day on Thursday to all those who have served our great country with honor!  In my family that includes John (Navy) and my Dad (Air Force) and on John's side, it includes his father (Navy), step-father and at least one or two cousins, nieces and nephews.  Thank you to all who served.  John put something on his Facebook status today that I thought was appropriate to pass along.

A United States Veteran is someone, who at one point in their life, wrote a blank check payable to the United States of America for an amount up to, and including, their life. That is beyond honor. There are too many people in this country who no longer remember that fact.

Thank you for letting your light shine!

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