Tag Archives: asperger’s

It’s Almost Here

LIUBA week from today, April 2, is World Autism Awareness Day.  Around the world, houses, like ours, and landmarks will be bathed in blue to help raise awareness for autism.  As we have in past years, Amber and I will surely wear blue to work, and we will probably make sure Kaitlyn wears blue to school.

I have written a lot about World Autism Awareness Day in past years (here, here, here, here, and here) both happily sharing our experiences and of places that have gone blue for the day, and also of disappointment in the lack of participation by others.  Those emotions are sure to be there again next Thursday.  Capitol Building 2012

For us, autism awareness is not a one-day or one-month thing, and autism does not leave our lives on April 3.  Amber and I do everything we can to raise awareness every day, and by reading these entries, you are helping, too.  And we thank you.

The public’s collective understanding of autism and those on the spectrum, like Kaitlyn, is getting stronger and stronger.  There is still a long way to go, but each baby step brings us that much closer to understanding and acceptance.

Those on the spectrum are blessed with so many amazing attributes.  Kaitlyn is one of the most caring and compassionate people I know; she has a huge heart for everyone, and truly sees the best in everyone.  She is extremely smart and driven to succeed in school.  She has a love of the world around her, and a deep commitment to making the world a better place.  Her love of dolphins is admirable, too.  Kaitlyn does have challenges, too, and chief among them is low self-esteem and self-confidence, which Amber and I work constantly on improving in her.  She is coming to understand her Asperger’s more, and that scares her sometimes, which just crushes Amber and I.

We are fortunate to have a great support system in place here, and that was very evident when I shared Kaitlyn’s angst earlier this month; the support we received from our Facebook friends was tremendous, and the comments on there meant the world to us.

While we are surrounded by so many great people, not every family in our situation is.  Every day, they face uncertainty and are filled with doubt that they are doing a great job.  If that is you and you are reading this, you are doing a great job just be being there for your loved one on the spectrum; if you are the family or friend of someone who cares for someone on the spectrum, reach our to them and be there for them.  Encourage them.

Autism Awareness is about more than just one day, it is the continued support of those on the spectrum and those who devote their lives daily to ensuring that their loved one is not slighted or doesn’t live in fear of being “different.”

Aspergers 1

Just A Little Reprogramming

Kaitlyn certainly had a blast on her Spring Break last week.  Between daily bike rides and a trip to Sea World and the American Girl store, it is safe to say that she had a great time.  And Amber and I are happy that she was able to spend some time away from us, which gave her a chance to miss us and for us to miss her.  Kaitlyn has already begun planning for next year’s Spring Break, and from the looks of it, she plans to exceed the fun from this year.  She has even come up with a schedule for the week, but that will have to be approved by us, Amber’s mom, and Amber’s dad before it will be finalized.

Of course, it also gave Kaitlyn a chance to have some additional flexibility with her daily schedule and with what rules were in place.

BinaryKaitlyn being gone for a week also means that Amber and I have to spend some time doing a little reprogramming.  Because she thrives on routine and structure, deviations can be troublesome at times.  Amber and I have come to expect that.

For example, it can take us close to a week to get Kaitlyn back on track after family visits for a weekend; it is both enjoyable and overwhelming to her to have family come visit for any length.  With that knowledge, you can only imagine the uphill climb Amber and I have been on since the weekend.

Most of what has needed work since the weekend has just been getting Kaitlyn back on a regular evening schedule.  It has been somewhat difficult to get her to get unwound at night, and even her reading time has been an adventure, which is way out of character.

I have little doubt that we will get Kaitlyn back on track sooner rather than later.  Hopefully the process will be accelerated since she started back to school today, and will be around her friends and be back to a regular routine.

 

Out Of Nowhere

Amber and I both knew the day would come eventually, but we had no idea how it would manifest itself.

Last night, out of the blue, Kaitlyn just broke down and started crying.  This is not typical of her, especially right before Survivor was starting, so we knew something had to be up.  It didn’t take long for us to get our answer.

upsidedown-world1Kaitlyn told us that she “didn’t feel like” herself anymore.  After a little more digging, she revealed that she felt it was because of her Asperger’s.  She said that she felt alone in the world and that she is treated differently by some kids because she has autism.  We were in the midst of a full-blown meltdown.

From the time Kaitlyn was diagnosed, Amber and I started discussing how exactly we would handle telling her, and how we would deal with situations like this when they came up.  When we told her about her diagnosis, she took it just fine.  She asked a few questions about what it meant, and what it was, and we answered them honestly.  We didn’t want to hide anything from her.  Since her diagnosis, we have been upfront with her teachers about it and worked with them to maximize Kaitlyn’s days at school without interfering with or interrupting the classroom environment.

One of the first things we told Kaitlyn last night was that her autism is just part of what makes her special.  It is what makes her the caring, trusting, compassionate, and gifted child that she is.  She was (and is) so scared that other kids will treat her differently because of it, or that she may be bullied because of it, and Amber and I had to convince her again that those things just weren’t going to happen.  (I’m not above going all “Curt Schilling” on people who mess with her, either!)

dolphin11aWe told her that her Asperger’s/autism is what makes her love dolphins so much and what makes her want to work with them in the future (she wants to be a dolphin trainer, and Amber and I will do everything we can to encourage her to be just that).  No, it is not a requirement for a dolphin trainer to have autism or Asperger’s, but it certainly can’t hurt to have someone who has been blessed with it and has such a deep love for them working with dolphins and educating people about them.

Another point we brought up with her is that nobody, under any circumstances, has the right to make her feel like she is less of a person because of her diagnosis.  Nobody.  Amber and I just will not tolerate it.

We know that last night will not be the last time we have to comfort Kaitlyn and reinforce to her what a blessing her having Asperger’s truly is.  We made it a point to tell her last night that we wouldn’t change a thing about who she is; we are proud of her, and we wanted to reassure her that we will always have her back.  Amber and I work hard everyday to make sure Kaitlyn understands how special she really is; we are fortunate to have people surrounding us who share that goal, and we are thankful everyday for the support system we have in place here (I don’t know that we will ever truly be able to express how much we appreciate what everyone does for us and for Kaitlyn everyday).

When people really get a chance to know Kaitlyn and take the time to really understand her struggles and successes, the impact it has on her, and on Amber and I, is tremendous.  It truly is a gift to have a child with Asperger’s, and we do our best to teach Kaitlyn everyday that she is truly blessed to have Asperger’s.  Aspergers 1

Utter Chaos

It seemed a little strange that there would be an open house at Kaitlyn’s school so late in the year, but that is where we found ourselves last night.  Honestly, it was pretty cool to be able to visit the school and her classrooms (yes, two classrooms) and talk to her teachers about the progress she has made this year.

chaosAfter navigating our way through the PTO’s silent auction (although there was very little in the way of actual silence in the cafeteria), we went over to Kaitlyn’s main classroom.  Kaitlyn was very excited to show us around and show us what she had been up to; there was a checklist on her desk of things that she was supposed to show us, and she happily did.  While we were standing by her desk, Kaitlyn’s teacher came up to us and chatted for a few minutes.  She made note that Kaitlyn’s desk was remarkably clean (for her, it seems), and also commented that her desk was not the most chaotic in the classroom earlier in the day.  Of course, this point warranted further investigation (I waited until this morning to ask), and as it turns out, Kaitlyn’s desk was the second messiest in the classroom before she cleaned it earlier in the day.  More on who had the messiest desk in just a minute.

From Kaitlyn’s regular classroom, we made our way to the gifted cottage.  Kaitlyn was very excited to show us where she has been going for the last six weeks or so.  Pretty much as soon as we walked into the cottage, it made perfect sense that Kaitlyn would have such a messy desk in her regular classroom; the gifted cottage is what most would consider utter chaos (although I would probably call it “organized chaos”).  As it turns out, the student with the messiest desk in the regular classroom is also in the gifted program, so it made perfect sense to me once Kaitlyn told me.

It is actually a pretty neat statement on the learning environment that is fostered in the gifted cottage.  In there, it is clear that there is the understanding that each of the kids learns differently, and those different ways of learning are embraced.  We learned that one of the main goals of the gifted classroom is to enhance the strengths of the students, and by doing so, make the weaknesses even stronger.  As funny as it sounds, what with Katlyn’s adherence to routines and structure, I am confident that she will thrive even more now that she will be in that type of environment; next year, she will continue to be in a regular classroom setting most of the day, and will also continue to move to the gifted area to enhance her day.

If you were to look through the archives of when I write about Kaitlyn’s school , you will see that this theme is repeated constantly:  we love where she is and could not be happier with the teachers she has had and the environment she is in.

Call To Action

dolphin11aKaitlyn loves dolphins.  She fell in love with them right around her 5th birthday on our trip to Sea World.  While we were there, she was fascinated by them as we watched them swim and play from the underwater observation area.  She named one that was seemed to be paying particular attention to her Archie (also the name of her stuffed dolphin, of course).  Ever since then, Kaitlyn seemed drawn to dolphins and has remarked several times about her desire to work with them when she grows up (of all the things she has wanted to be in just under 8 years, this has had the most staying power).  At some point in the very near future, Amber and I are going to take her on a dolphin watching tour, and we would love to also have her do one of those swim with the dolphin experiences, too.

This morning, we were watching the Today show like we do every morning.  They were doing a story on President Obama’s trip to Japan, and that story included some commentary about Ambassador Caroline Kennedy.  As part of the story about Ambassador Kennedy, it documented some of the things she has done during her time in Japan to promote goodwill between our countries, and also one of the things that she has spoken out against that the Japanese people have been somewhat critical of her for.  And it was the action that was criticized that had Kaitlyn all emotional and on the verge of tears this morning.

Apparently, it is a pretty popular thing in Japan to do something called a “herded dolphin hunt.”  Which, you can imagine by its name, involves fishermen in boats basically “rounding up” pods of dolphins so that they can be hunted.  Needless to say, Kaitlyn is not too happy about the practice.  Once she started to regain her composure after the story aired, we could almost see her resolve starting to harden and her determination form in her desire to have that practice stopped.

Kaitlyn definitely feels a connection with animals (that is sort of a hallmark of people with Asperger’s), especially dolphins.  Amber and I have no doubt that if she decides that she is going to work with the animals, she will, and if she decides that she wants to help carry the torch in stopping dolphin hunting, we know that very little can stop her.  And we will support her every step of the way.

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