When is an Asperger's diagnosis a happy occasion?

When you always knew something was different about you and had never been able to put a name to it. When you wondered if you were the only one in the world who felt a certain way. When you want to help other people understand what life is like on the Autism Spectrum.

Meet Elyse; a 17 year old with a very inspiring story.
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Tri-Valley student triumphs against autism
From Newsminor.com, By Kris Capps

HEALY, AK — Elyse Lynn has a story to tell.

It’s a story that is uncomfortable for some, revealing for others and perhaps therapeutic for Elyse. It is the story of her life as a teenager who suffers from Asperger’s Syndrome, a form of autism.

Elyse, 17, shared her story this week with about 100 teachers at the State Special Education Conference in Anchorage. She told them what it’s like to be a senior at Tri-Valley School in Healy, trying to fit in with her classmates and the world around her.

That’s not as easy as it sounds, but with the help of her teachers and her community, she has found a way to make it work.

People who suffer from Asperger’s want to fit in, but they simply don’t know how to do it. They often are socially awkward and don’t understand conventional social behavior.
To the untrained eye, a child with Asperger’s Syndrome might seem like a normal child behaving differently.

That was the case with Elyse, who always was on a little different wavelength from her peers. It took years to identify her affliction.

Even as a youngster, Elyse knew she was different, but she didn’t know why.
“I guess I knew in elementary school,” she said. “I was always slower putting on my clothes to go outside for recess, and people were getting frustrated with me. They thought I was mentally slow.”

Elyse said she just kept thinking, “Why are these people getting mad at me? I’m not doing anything wrong. I’m just being me.”

It wasn’t until she was 13 years old that she was diagnosed. Elyse was the first to recognize it. She spotted a poster about autism on the bulletin board of the local post office and read the symptoms of Asperger’s Syndrome.

“I think this is what I have,” she told her mom. Her parents, Elwood and Beth, had struggled for years to diagnose Elyse’s condition. They instantly began investigating this new possibility. Soon thereafter, her mother came home with a big smile on her face.
Her mother announced, “Elyse, you have Asperger’s.”

It was Elyse’s a-ha moment. “There was a reason,” Elyse said, reliving that moment of grand relief. “I knew everything happened for a reason. That reason might not be clear at the present time, but it will be revealed eventually.” Finally, she had an explanation for her behavior.
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I encourage you to read the whole article. A very special look into this brave and intelligent young girl's life.

Good signs and happy hope

Bubble lady whipped out some more tests recently. The last time she ran cognitive tests for Shea he just didn't have the verbal skills to be able to take the test appropriately. Wisely, she set them aside and said she would run them again once he had progressed to a point where it would make sense.

On Fridays, when we go to the city for speech, I usually pop in to say hi, let her know of anything that has happened over the week and let them work together without me there. For the first year or so, I stayed in the room and observed. And, I did learn a lot but I felt I was distracting them both. I find that he is a bit more oppositional when I am there. And, frankly, it just makes me a nervous wreck to sit there and watch the battle of wills. I feel it is better for everyone if I go and hang outside for the hour, run errands, listen to the radio, etc.

So, I did not know that she had deemed the time appropriate to run those tests again. But, when I came to pick him up after the session, she was visibly excited. She had ran the cognitive portion of the test and he had landed at 53% or pretty much smack dab in the middle. Or as I like to think of it, age appropriate.

What a relief. We had always intuitively known that he had his wits about him. But, somehow the quantified number gave me waves of relief and hope.

Bubble lady also ran another test to find out where his language was compared to typically developing kids. The results came back with his expressive language at 3 years and 3 months. Or about a year a half behind. This didn't sound too bad to me and it seemed like proof that serious progress has been made.

So, here is a perfect example of the dichotomies of life; on one hand I don't trust those standardized tests one bit. On the other hand, these test just gave me concrete results that I could cling to as we ride this wave.

I guess that is why open minds glean more benefits?

Searching for Diagnosis, Part 2

By the time I got a call back from UW CHDD, it was 18 months after I had first reached out. After that much of a wait, I felt like telling them to take a hike but I didn't want to leave any stone unturned. I felt, and still feel, that the more expert eyes on Shea the better. So, I went ahead and scheduled an evaluation.

The CHDD scheduled two consecutive weeks, 9:00 to early mid-afternoon to cover all the testing and evaluations. The first week we would be meeting with the Pediatrician and a psychologist (more standardized testing). The second week was Occupational Therapy and Speech Pathology.

First, let me talk logistics. When you live on an island, you are literally at the mercy of the ferries and peak traffic. To assure being in the University district at 9:00, I would have had to be in that ferry line very early. Luckily my mom lives on Queen Anne, we just decided to crash there for the night and drive across town in the morning. In theory it worked fine but, of course, I got very little sleep being away from home in a different bed and worrying all night. So, by the time I rolled into the CHDD the next morning, I had a pretty crappy attitude and was ready to do battle with the folks that blew me and my boy off for a year an a half.

We started out with the Pediatrician who did a very thorough evaluation. Nothing unusual came up. Although, he did suggest a formal hearing test which they were able to sneak in that day right after his evaluation. That test confirmed what we had already known; Shea hears fine.

Next stop was the Psychologist who observed Shea play and administered tests while I filled out a pile of questionnaires. I felt Shea was not able to really perform well due to being hungry and tired. Why they didn't schedule time for a break and/or lunch for a toddler, I have no idea. We got through what they could but I asked them if we could do the rest first thing at the next session. We finally got out of there at about 2:00. Whew...long day. Shea was a champ. I was exhausted.

The next week went a little smoother since I knew what to expect and slept better in Mom's guest room. We got the cognitive testing done first thing while Shea was fresh and perky. And, he did test much better than the previous week.

Next stop was the Occupational Therapy and while Shea jumped and play with balls, a social worker was there to talk to me. Maybe I had been flagged as a troublesome parent or maybe it was standard operating procedure but she was a very sweet, elderly lady who obviously had been working in the field for a very long time. She gave me a lot of good advise about how to deal with the school district, insurance company and how to handle the IEP meetings, etc. She was very compassionate and did a lot of listening and I was able to get a lot off my chest. She did agree with the consensus that Shea was not autistic. And, she encouraged me to include him in more group activities with typically developing peers.

The last meeting was with the Speech Pathologist. Incidentally, she happened to be a friend and colleague of Bubble lady. She was very assertive and pretty demanding of Shea. And, here is where she dropped the mini-bombshell. She didn't think Shea had Apraxia but very low tone in his lower face and mouth. This sort of took us away from a Neurological disorder and back to a physiological issue. Sigh...

She strongly suggested the PROMPT method in his treatment and demonstrated how using her hands to touch Shea's mouth can help him form sounds. He fought and resisted her but it did really seemed to work.

Come to find out PROMPT certification is a long and arduous process and that there are very few Speech Therapists who have it. I did some looking around, thinking I would add it to Shea's specialist mix but it wasn't happening. Bubble lady has more than a little bit of experience with PROMPT during her 30 plus years in the biz. That and her good solid relationship with Shea helped us decide that consistency and comfort zone was key.

I remember asking the Speech Therapist at CHDD if Shea's issue was something that he would grow out of or he would just "catch up" eventually. She said, "Not without help."

As parents you never really know if you are doing the right thing. How can you? It is only through hindsight that you can determine if you took the right path. So, until we get there, we just continue to muddle through.

So, what did we really get out of all that? Good question. I suppose a little peace of mind, some good suggestions, some compassion. Maybe the most important thing I got was; there is no doctor that is going to "cure" my kid. The "cure", if there is one, is the journey and the only one who has the capability is us, his family.

Searching for diagnosis, Part 1

When Shea was about 2 1/2, his teacher at the Developmental Preschool gently suggested that we get a Neurological screening from the UW. Apparently, they have a pretty extensive facility just focusing on Human Development and Disability called the CHDD.

We didn't know much about it at first and were only given a phone number by the teacher. I left a message, waited, left another message and waited. Nothing. I waited a couple of months and tried again. Nothing. All in all, and I am not exaggerating, I had to have left more than 15 or 20 messages. Each one getting a little more concerned, frustrated and exasperated.

Maybe I have a bad number? That is when I started doing some thorough checking of the CHDD website trying to find an alternative number or some way to access a scheduling person. Nope. I had the right number. And, it did seem to be a real, legitimate facility that has access to all the experts to do a full screen for Shea. As more time passed with no response, I began to wonder; Was there so many kids needing Neurological screenings that they can't get back to us all? Did they not want to see him until he was older? Why weren't they calling me back? Even just to tell me there was a year waiting list and to hang in there?

The irony was sharp. Of all the parents who need some help, compassion and the luxury of not being blown off, it's parents with special needs kids.

I hit the wall; I begged my GP to find someone at Children's Hospital that we could go see. UW was non-responsive and I wasn't going to wait around for those jack-asses to pull it together. By the way, they actually did finally call me 18 months after my first call. They had no excuse, gave a minor apology and some lame CYA story about that scheduling person is no longer with us. Whatever. We did go through with the screening and I will cover that in Part 2.

We got appointments with a Speech Pathologist and a Geneticist at Children's Hospital when Shea was about 3 1/2. They sent us to the Cranial Facial clinic which is where they do all the amazing reconstructive surgery for cleft pallet kids. There was some initial concern that Shea's problem was physiological so we started there.

Jake and I together took Shea and spent a good chunk of the day. And, let me say, if there is a more wonderful, super kid friendly hospital in the world, I would genuinely be surprised. They made the experience very easy and not in the lease awful for all of us. I was so grateful to have some more expert eyes on him that I felt like weeping. But, I did keep it together pretty much.

The Geneticist came in and wanted to check for chromosome abnormality, so we would have to get a blood draw and wait 2 weeks for results. I remember the nurse was this huge, gentle giant of a black guy who took blood from Shea so quickly that he didn't really know what hit him.

Our meeting with the Speech Pathologist seemed to confirm the previous Apraxia diagnosis which I describe as a Neurological disconnect in the language center of the brain.

She did not see evidence of Autism which also had been brought up and reaffirmed by Bubble Lady. But, I wanted more. I asked for prognosis, "What happens to these kids? Do they ever speak? Will he have a life? What do you think, honestly."

She said, "Oh yes, the brain re-maps and creates new pathways. The brain learns to compensate for something that is difficult and finds other ways around it. Like when they are in college and they stay up all night studying, they may have difficulty finding certain words or running their thoughts together."

Holy cow! College!? I have been wondering if my kid was going to be mainstreamed in school! Wondering if I would ever hear "I love you" come out of his mouth! Wondering if he will ever be considered somewhat "normal" with friends and activities. And, she had him in college!

I don't know if she knew how happy she made me when she said that. I suppose I kept my cool but it was the stand out piece of info that came from that meeting. And, for a long while I clung to that thought, repeating it to all who knew me or dared to ask. Closing my eyes I began to see my little boy growing up to be a man who gets a little word jumbled when he is tired.

It seemed like a gift.

Apraxia

The first speech therapist that we saw brought up Apraxia as a possible diagnosis. Huh? What is that? I turned to the internet to find out.

"Apraxia of speech, also known as verbal apraxia or dyspraxia, is a speech disorder in which a person has trouble saying what he or she wants to say correctly and consistently. It is not due to weakness or paralysis of the speech muscles (the muscles of the face, tongue, and lips). The severity of apraxia of speech can range from mild to severe."

More good information at:

http://www.nidcd.nih.gov/health/voice/apraxia.htm

I ran across another very good website focusing specifically about Apraxia with kids:

http://www.apraxia-kids.org/

I did a lot of reading and worrying, then more reading and more worrying. The diagnosis seemed to fit. When we modeled for him sounds or asked him to mimic, he would delay or just sort of stare at us. I kept thinking, "Can't he do it or won't he even try?" He seemed to be able to make sounds on his own terms but when asked to perform he pulled up short. Was it performance anxiety?

Later our wonderful private speech therapist that has been so supportive and helpful to Shea and our family, told me that Apraxia in children is a relatively new focus perhaps 10 or 15 years old or so. She talked about how Apraxia or Dispraxia was originally studied in stroke victims who had lost speech. The words are there in the brain but won't come out as speech.

Wow, I thought, how frustrating. If this is really the problem, how the heck am I going to help my kid?

Communication is crucial for human contact. How is my kid going to have a productive life without being able to talk? Those were dark days. But, we got to work and started signing.