Do I Allow My Autistic Son to be Used in Research?

The answer to this is:  Yes, with stipulations.  Brendon has been involved in two studies so far in his five years.  I do say "so far" because in the future, as long as a study fits our guidelines and his abilities, I would probably put him in it.  Some people will think this is horrible and that my child is being used as a guinea pig.  Let me explain my point of view.

In the first place, a study must be harmless to him, not exacerbate any issues he already has, not irritate him emotionally or physically, and must not be a burden on our family.  Second, it must have a potential to benefit other disabled people in the future.

The first study simply involved him wearing a small unobtrusive recording device so many hours a day to record the sounds he made.  The one he's finishing up now is a behavioral study.  I take him once a week to a one hour session.  The idea is to see whether he will continue to use a method of communication he chooses longer than an alternative when all reinforcements are removed.  I sit on the other side of a two way mirror and watch every second of every session.  Let me tell you what it amounts to.  In essence, Brendon plays with bubbles, play dough, or an IPad for an hour, but he has to request whichever item in some way to get it.  Meanwhile, he is being videoed and three people with computers are taking notes on his every move.  He has a lot of fun and hopefully this information can someday be used to tailor therapy for other disabled people. 

What is our benefit?  There is no monetary compensation, even for gas, but the doctor heading the study has been willing to give us ideas and input on some of Brendon's problem behaviors. 

So do I allow my autistic son to be involved in research?  For me, it's a YES! 

Color Run!

This weekend we joined other local families and individuals for the 5K Color Run to support our local Autism Society.  Thanks to Grandma for providing a soft comfortable wagon for Mr. Brendon to ride in.  He made it the whole 5K and even got a little bit of color on him! 
It was so encouraging to see all the support for our kids with autism.  Sometimes it's easy to feel so alone in our struggles.  To see so many of the people in our support group and from SIU Center for Autism Spectrum Disorders was great.  I was thrilled to recognize and meet Ryan, an adult with autism, who was one of CASD's original clients and is now a thriving and talented young man. 
Thanks also to my sister, her husband, and all four kiddos for being a part of Team Brendon!  :)

Tiffany

Our oldest daughter, Tiffany, will turn 19 in a few days.  We were privileged to adopt her at the age of four.  One of her diagnoses is autism.  She is higher functioning than our son, Brendon. They have many similar issues, but at different levels.  I haven't posted much about her disabilities on my personal Facebook page because at her age and cognitive level, I felt she should have a choice in what and how much people knew.  I discussed it with her and she has given her permission for me to post about her on this page.  If that changes, I will quit. 

Today, I took her to the doctor's office for a physical for Special Olympics.  We had a two hour wait to see the doctor and then stopped for lunch before I took her to school.  This is her junior year and she is in the REACH program at her school.  This program trains and supports her academic and functional skills for independence. 

Through the years she has struggled with speech, pica, swallowing, sensitivity to clothing, borderline IQ, understanding social rules and cues, understanding danger, etc...  There are honestly too many things to name, but our hope is to see her achieve as much independence as possible. 

Her progress hasn't always been smooth and it's even been under protest from time to time, but we refuse to give up!   Hopefully, someday she will understand how much we love her.

Easter Update

Surprise, surprise! He didn't fight us getting dressed at all!  :)
However, he hasn't felt well all day.  I'm not sure what's wrong just yet, but he has serenaded us with his unhappy wailing most of the afternoon and nothing I do makes him happy.  I attempted over and over to get a good picture in his dress clothes, but as you can see, he just wasn't feeling well.

Easter- Autism Style!

Brendon woke up first thing this morning, put on his Spider Man shoes, and went out to swing.  He wasn't even aware that it's Easter, as far as I can tell.  Sometimes it makes me sad, that he never looks forward to special things, like Christmas or his birthday.  I've had to make peace with the fact that it's okay for him to spend special days celebrating in his own way or not at all.  I do insist on a few things that are important to me, but other than that... If he wants to swing on Easter rather than hunt for Easter eggs, who cares?  Not me.  Well, not much.

Something that I will insist on, later today, is that he wear a real outfit (not shorts or sweats) to Easter service at church. From all indications, and by that I mean when we tried it on him, it will take every ounce of strength John and I both have to get a polo shirt and a pair of jeans on him.  It will be about a 30 minute fight and he will be upset and teary for at least a couple hours afterward.  I'm not looking forward to it.  At least he will like the hat I bought him to wear.  Or as he calls it, his "at."   I'll post a picture later, if we are successful in getting everything on him at once.  :)

5 in1 Doctor Appointment

John and I took Brendon to a doctor's appointment this morning with his pediatrician.  It was our usual 5 in 1 appointment.  I wait as long as I can to take him in, so when we go, I always have a list on my phone to go over with her.  This time I had even bookmarked pages on autism blogs and Google searches for medications.  She's always patient with me and my lists.  She seemed happy to look over my research and used it to help us make our decisions about med changes.  She gets an A+ in my book.  :)

We haven't been able to get height, weight, temp, blood pressure, or anything on Brendon at doctor appointments in years!  We've been guessing for a long time.  We usually push him in his special needs stroller, no.1 so that he's not trying to escape, and no.2 because he views his stroller as a safe haven when he's scared or has a lot of anxiety.  Well, today we decided to change it up and let him walk.  It was sort of amusing to watch people's reaction as he twirled, flapped and chattered in the line to check in for his appointment.  His loud noises were proof of his nervous excitement, to those of us who know him well.  Expressions ranged from pained annoyance to exasperation to downright amusement. 

As soon as we were called back and Brendon saw the scales his noises changed to unhappy wailing sounds.  However, to my utter and complete shock he allowed the nurse to weigh him, measure him, CHECK HIS TEMP (WOW!), and even do the blood pressure cuff thing on his arm!  After we talked to the doctor we had to take him down to the lab to have blood drawn.  I was a nervous wreck!  I've seen five nurses on top of him  trying to hold him down to just get an IV in him in the ER.  And they didn't succeed.  So I was scared.  But to my surprise it wasn't bad.  We had two quick and good nurses and although he cried, he didn't fight much at all.  I was one happy mommy when it was all over!   :)