ADAPT...a parent training course

We've been on a long journey so far with Owen.  One that we believed was leading to several different places...sometimes all at once.  A road paved with sensory issues, tantrums, speech delays and many other possible labels and potential diagnosable disorders.  After doing some reading, looking at our child and thinking about our daily life with him, I tried to prepare myself for whatever the possibilities may be.  But if I were honest...did preparation make any of the things people were telling us any less gut wrenching?  Of course not.  Because let's be serious...no one wants to sit down and "evaluate" their own child to the minutest details...pour over 15 pages of check boxes asking if your child displays this tendency or that.  Or who wants to spend time having to debate your spouse because their perception of a question differed from yours.  Nor do you want someone else to sit down and look over him or her with a fine tooth comb.  That is almost worse.  Objectivity is so hard to swallow.  Nothing prepares you for it.  Knowing it's coming, reading materials before hand...it just doesn't help.  AT the end of the day it's your baby who you would lay down and die for...so it's tough.  But I truly believe we loved Owen enough to swallow the fear and pain and look the situation straight in the face. And if I had it to do all over again?  I'd do the exact same thing again.  No question about it.

It all started a couple years ago with Early Intervention...an in-home therapy.  I wrote about it here, here and here.  It was my full intention to log our progress on the blog because I thought it might be helpful to anyone else out there who might be struggling with similar issues....but truth be told?  Our family expanded...therapies began making changes in Owen that were phenomenal, Jeremy's Dad got sick...and life was simply busy.  But to this day...our journey continues...and though I haven't written about it in awhile...Owen's road is not one that is clear at this point.  As far as development goes...it may never be.  Owen has been attending school through our Early Childhood Center. This year is his second full year.  At the end of the school year last year, his teacher recommended we go ahead and get him evaluated for autism.  We started the grueling and lengthy paperwork...and after a summer of waiting for school to start...the piece fell into place and we got everything scheduled.

So last month we attended the evaluation at an Autism Center in St. Louis called Easter Seals Life Skills Center for Autism.  Based on this meeting, we were nearly certain they felt Owen had autism and after a meeting with school, that we would have an educational autism diagnoses to go along with it.  What happened surprised me...but it's kind of how Owen's journey has always been.  Not exactly what you think.  We met with his school teacher, his school psychologist, his speech therapist and our representative from the autism center to discuss the findings from the center eval and to determine if we were going to update Owen's IEP (a list of goals the school is required to keep for Owen in order for him to receive pull-out services at school such as speech therapy) to reflect a newly diagnosed autism spectrum disorder.  At the meeting after 2 hours of discussions, it was decided to give Owen more time.  He was developing out of so many tendencies.  Tendencies I have no doubt would have earned him the autism diagnosis had we been looking at him more closely when all of this got started.  But tendencies that either with time, therapy, patience and maturity...we are seeing get better and better for him.  So, because of his progression through these things, rather than make any changes right now we are going to wait a few more months to finalize things.

One thing that came out of the evaluation was that they did recommend a free 2 week intensive, parent training course called ADAPT.  10 days from 8:30 to 4:30 spent learning about the autism spectrum disorder, applied behavior analysis and spending time in therapy sessions designed around your child. After much trepidation on my part b/c of the timing, I bit the bullet and got us signed up for the class.  It began Wednesday the 13th.  Owen and I have headed over to St. Louis for seven days now...and will continue to do so until the Tuesday before Thanksgiving.  In the first few days I had already learned a lot, felt a sense of connection to other people and their struggles with their kiddos and simply felt empowered in the decisions we've made for Owen so far.  As the days have gone on, therapies have gotten harder and I'm understanding that there truly is no cure for ASD or related disorders...I am continuing to be amazed by my little boy...beginning to see the world through his eye more clearly...and finding myself filled with sadness because autism is hard to understand, explain, and comes to terms with.  It's hard as a parent to understand behaviors and he's my child who I love unconditionally.  What about the world he's heading into??  So much to think about.  Needless to say, it's exhausting, but I have no doubt Owen and I will end this better people than we started...and I will leave a much more educated parent with a whole toolbox of things I can put to use with all of my kids...especially Owen.

Here are some facts about Owen that are worthy of remembering for my own memory bank...and also interesting.  Especially when looking at the Autism Spectrum Disorder and all of it's components:
**As a baby he often was hard to console, was a poor sleeper and struggled with communicating needs (this is common among children who get diagnosed with ASD)
**By the age of 18 months Owen was without much speech. A couple words we did hear Mom and more had come and gone without hearing them again.  By 2, he still wasn't talking and after a hearing test revealed he was hearing fine...we began our journey.

**Owen began working on speech therapy at age 2 and a half through in home therapy.
**Owen began talking through use of sign language...and experienced a language explosion around age 3 to 3.5.  His speech has continued to improve far beyond my expectations. He is still behind for his age, but considering the deficit and the comeback, we are proud of our little strong-willed boy who keeps trying even when he's frustrated.
**Owen is currently in a special education classroom that has 5 kiddos.  There is a teacher and 2 aides to assist.  It's a highly restricted classroom...because kiddos in it often need reminders, reinforcement and instruction to complete tasks. I believe he needed and still very much needs this scenario for his daily work to continue to progress.  However, his socialization skills have come a million miles since starting full time with his current teacher...so much so that they are integrating him into a larger classroom for circle time a few times during the week.  It's a step up in size...to 12 mixed gen ed and special ed students.
**Owen loves routine. Has an amazing memory for directions, routines, movie lines and anything else you tell him.
**Owen often struggles with transitioning.  Bedtimes, baths, to and from preferred to non-preferred activities often tend to be the hardest.  Though we have learned ways to help him cope with changes, he still can be caught off guard with things he cannot predict or plan.
**Owen is super visual.  The use of pictures to remind him of what he needs to do (a picture schedule) has helped us with routines such as bed, bath and has made transitioning at school much much easier.
**Owen loves playing with other kids (something that is very much not typical of ASD kiddos).  He is working on his personal space and some of the more subtle social cues that kiddos like him sometimes struggle with...but I believe he is getting better and better.
**Owen is a very picky eater. He struggles with gastrointestinal issues and has for as long as I can remember.  He hates weird textures and often refuses to touch anything that is slimy, soft or sticky.
**Owen often prefers to do things on his terms, but he is learning through lots of work on his and our part, that life isn't always about you and your terms.  We are teaching him about flexibility and choices and trying to help him work on this.

Some facts I've learned from this ADAPT training program so far?  1 in 88 kids will be diagnosed with autism.  Boys are 5 times more likely to be diagnosed than girls.  There is a 5 to 6% chance siblings will have a related disorder or be diagnosed.  There is no test for it and there is no cure.

What does all this mean?  Honestly?  For me?  These are things that make Owen Owen.  Does he have autism?  I'm still not 100% sure but if we go with this diagnosis prior to kindergarten, I will not be surprised. Whether he does or not, the things we are learning to do as parents, are making us better more confident and accepting people.  And helping Owen have the most successful life possible?  It's what this whole parenting journey is about for us. We will continue to do whatever we need to do to support him and our other children as well.  I hope they always know how much we love them.  And how strong they already are!  Prayers for these final days of therapies and workshops would be amazing as Owen and I could use few extra from God's army of angels pushing us through to the finish line :)

Thank you God for Owen, for wonderful places like LifeSkills who help so many struggling families and for the virtue of patience and understanding.  Life is pretty amazing...even when we get a curve ball our direction now and again!