Taysum Part One: Asperger's Syndrome

This is an email that I sent out to family and friends (sorry if I don't have your email!) I wanted to put this on our blog so we can keep it.

Dear Family and Friends, March 25, 2010

This email may be a bit lengthy, I'll just let you know up front. However, this is one way I've chosen to accept a new opportunity that has presented itself in our lives. Taysum has been diagnosed with high functioning Autism, also known as Asperger's Syndrome. I have kind of felt over the past year or more that this is what he has been struggling with; or something similar. So, it wasn't devastating or even too surprising to have these thoughts confirmed; if anything, it was a relief to know what we are dealing with and how to better to focus our efforts. Not only that, I feel the affirmation that my "mom instincts" can be trusted! ;)

The disability of Autism itself, as I very basically understand it, is not being able to communicate (functional communication/social communication). Most of the other symptoms that my be more stereotypical to the disability (anti-social, intense/obsessive special interests, a general "quirky" personality) are just peripheral. So, when we say that Taysum is Autistic, we're just saying he needs help learning to communicate the way most of us communicate.

We had a very positive experience with the specialist and I really appreciated her approach and her suggestions. Taysum has been receiving services for Speech and Occupational Therapy (OT-fine motor skills) from the Children's Resource Center here in Lovell since before he was 2 years old. The specialist we saw was extremely impressed with all they have been able to do with him and she said, just keep doing what you are doing! So, even though he was just diagnosed, he's been receiving the exact services he's needed for over 3 years!!

We really feel so blessed. I am no where near as educated as I hope to become, but I was at least familiar enough with the language that I could follow along. Things that I learned while in college about Special Education; my first job in the schools was as a 1:1 para with a boy who showed signs of Autism; my second job in the schools was as a para in a self-contained classroom with four boys who had severe Autism; (before both of these jobs, I has asked for a blessing and I was told both times that these experiences would prepare me for motherhood); we have our guardian angel, Heather, who is not only on the staff at CRC, but has also been his nursery teacher, Sunbeam teacher and now CTR teacher at Church!! I just recently found out that she even sets goals for him at church and has taken it upon herself to talk to the Primary Presidency about how best to help and engage him!! [She has been released since I first wrote this and we are missing her SOO much!] Ken has been trying to save up all his days off for the baby and so she came with me to the appointment as well! She has just been wonderful!; and we also have JT, Carly and Boston and Uncle Jeff, Melissa and Colten who have been pioneers in our family and great examples to us of how to be pro-active successful parents of a child with this disability. Carly's blog has been such a blessing as well. Since I've kind have thought this is what Taysum was dealing with, I really paid a lot of attention to all the wonderful information she's shared and I was able to recognize a lot of language and names of experts on the subject when the specialist brought them up. I actually wrote to both families the day I first found out and they have already been a wonderful source of information and hope and support! So, really, I feel like in some small way, our all-knowing, gracious Father in Heaven has been preparing us for this experience over the past 8 years (3 of which Taysum wasn't even with us yet!) And we have all of you!! I thought, "Well, I'll just email our family and closest friends." [The ones I have email addresses for.] If you look at the sent list, there are probably nearly 50 of you and I'm sure I missed some!! What greater resource or team could we have on our side!?!!? As if that was not enough, when he goes to Kindergarten, guess who one of the Special Ed. teachers is? Grandpa Anderson!! We're also thinking of holding him back one year in Preschool (he is pretty young in his class) and if we do, he'll be in the same grade as his favorite cousin, Carissa, and his Aunt Lindsay is hoping to be one of the Kindergarten teachers as well!!

So, what does this mean for Taysum? The best part of the appointment was that there wasn't any life-altering upheaval or change we need to make! As I mentioned, he has already been on an IEP (Individual Education Program) at school that has been providing all the services he requires. Only the name will change (from developmental delays to high functioning Autism or Asperger's Syndrome) and they'll add the specialist's piece of paper to the report. She did mention that some people try changes in diet, etc., but she presented them as things we could just try and not a completely new diet that he would be totally unfamiliar with! I just need to self-educate, and we need to be more diligent in being aware of triggers and situations and other distractions that may impede his success. It just felt so right and manageable! She also said that people who they catch before the age of 5 do VERY well. Most people will never even know that he has Asperger's Syndrome. He'll be just as "normal" as any of us! :) For me, it's more of a placebo affect than anything to have a name for "it"...it just really helps to know, I'm not a bad mom or that we're not necessarily doing anything wrong.

One thing the specialist was a little concerned about was Taysum gets a little "spacey" at times and it can be difficult to bring him back and regain his attention. This could be indicative of seizures. Around 17-19% of people with Autism do have seizures; however, she said that was extremely high for what she's seen in her practice. She's pretty sure it will come back normal, but she would like him to have an Electroencephalography (EEG). If it comes back normal, we'll just keep an eye on him. If it comes back abnormal, he will have to have an MRI and we'll go on from there. Since we're having our baby next week, she said there isn't any rush and it will happen probably closer to May. Heather told me that they haven't seen it too much at school, and they've taken the approach that it is replacing the meltdowns. Instead of acting out, he's starting to turn inward and just kind of "checks out" until his brain is ready to come back and deal with things. It does happen a lot more often at home and it's random for the most part. So, we'll see what happens with that.

I've probably lost you all by now, and I'm really impressed if you are still reading, but I tried to put the most important things at the first so you could at least have an idea of what we've found out. The rest was mostly for me to just organize my thoughts! :) We love you all and we just wanted to let you know. Everything else is going pretty well. Ken is working SO hard to get ready for his PE Exam (Professional Engineering) which is about 2 weeks after the baby and to get everything done he needs to with work and Scouts. He is so wonderful! We're on the final count down and only have 6 days until Hayden joins us and we can't wait! Taysum and Bailey have been very sick, but we're thankful it's before the baby and not the first week he's home! We love you all and pray that you are well! You all mean so much to us and I'm sorry that this isn't more personal. This email is very wordy already, but if you have any other questions, we'd be happy to talk to you! We love you and hope you are having a WONDERFUL Spring!!

Love,

Ken, Kim, Taysum, Bailey and Hayden

Since this email, we've been to Kindergarten screening and a Transition Meeting. All the teachers and administration at the Elementary School have just been wonderful. They came up with a great plan to help him! He will have lots of support and we're feeling pretty good about sending him, other than he is pretty young. Taysum has really been struggling at Church since Heather is gone, but the Presidency has been great. They came to me and asked what they could do and we're going to try and get a "helper" for him.

The following video clip is probably my favorite description about what Asperger's Syndrome is in general terms. I love at the end where they say, "'We're all a little odd.' 'Yes and some of us just have a name for it!'" http://www.aspergerssociety.org/articles/aust.htm

Also, on our blog, I always try and put a song that kind of goes with what I'm writing about. The song for this post is "The Greatest" by Kenny Rogers. I've had it on here before when talking about some of the struggles and blessings we've experienced with our kids. When I think about it, it just really explains Autism well. The boy is playing baseball all by himself and keeps at it and does NOT give up on what he has in his mind needs to be done. He has the confidence that he is "the greatest there has ever been"!! At the end when he strikes out, he doesn't give up or become discouraged. He smiles and says, "Even I didn't know I could pitch that good!" Autism is just a different way of thinking! I love you, so much, Taysum Guy! Be patient as I learn from you and thank you for letting me be your Mommy!!

"The Greatest" Kenny Rogers

Little boy, in a baseball hat,

Stands in a field, with his ball and bat,

Says "I am the greatest, player of them all"

Puts his bat on his shoulder, and tosses up his ball.

And the ball goes up, and the ball comes down,

He swings his bat all the way around,

And the world's so still you can hear the sound

As the baseball falls to the ground.

Now the little boy, doesn't say a word,

Picks up his ball, he is undeterred,

Says, "I am the greatest, there has ever been,"

And he grits his teeth, and tries it again.

And the ball goes up, and the ball comes down,

He swings his bat all the way around,

And the world's so still you can hear the sound

As the baseball falls, to the ground.

He makes no excuses, he shows no fear,

He just closes his eyes, and listens to the cheers.

Little boy, he adjusts his hat

Picks up his ball, stares at his bat,

Says "I am the greatest, the game is on the line,"

And he gives his all, one last time.

And the ball goes up, like the moon so bright,

Swings his bat, with all his might,

And the world's as still, as still as can be,

And the baseball falls, and that's strike three.

Now it's supper time, and his mama calls,

Little boy starts home, with his bat and ball,

Says, "I am the greatest, that is a fact,

But even I didn't know, I could pitch like that."

Says, "I am the greatest, that is understood,

But even I didn't know, i could pitch that good."

PS an update on his vision. His glasses are really helping! He is extremely far-sighted and has an astigmatism in both eyes. His first couple appointments, they'd show him a card that he had to look at though 3D glasses and he couldn't see what was on the card. This last time, he could see it and we were all so excited!!