Sunday, July 22, 2012

Our Story, or How I Came To BioMed Part 3 - Kiki Gets a Diagnosis

In January of 2005, I made my first visit to A.I.Dupont Children's Hospital. After spending all morning meeting with the neurosurgeon for Cameron, I took advantage of simply being in the hospital and went to find the Developmental Pediatric Department. 

Kiki and Daddy, during our visit to Florida in Feb of 2005
age 2 1/2 years
I had been trying, with no success, to get an appointment booked for Kieran to see a Developmental Pediatrician. I had called no fewer than 10 different times (multiple numbers each time) over the course of the previous month and had yet to even talk to a person within the Developmental Pediatrics Department. I had left messages each time, and had received no response to any of them. But on this day, I wasn't going to leave the hospital without an appointment scheduled...even if it was 18 months out.

No, that was not a typo or an exaggeration.

The reason I was trying A.I.Dupont Hospital, instead of the more famous and prestigious Children's Hospital of Philadelphia is because CHoP had an 12 month waiting list before they would even schedule an appointment to see a Developmental Pediatrician. 

I was able to talk to a person when I called CHoP, but they weren't scheduling appointments. I would have had to get on a waiting list and the estimated time that we would see a Dev. Ped. was 18 months. This seemed beyond ludicrous to me, my son was 2 1/2 years old. I needed an official diagnosis as soon as possible, not when he turned 4!  But that's what Developmental Pediatricians were dealing with in early 2005--that's what happens when you have literally tens of thousands of children develop abnormally all of sudden
Cam and his Big Melon. @ 9 months,
just learning to sit up by himself.

So, there I was wandering about the hospital after spending all morning meeting with Cam's neurosurgeon, towing Cam around in his infant carrier in a wagon. I wanted to see the scheduling secretary for Developmental Pediatrics and I wasn't leaving without seeing him or her.

It took me a while to find the right area, because it was tucked way in the back of the hospital...after all this is not a place that patients ever visit. There were some changes afoot within the department (no department chair), or at least, that was the reason I was given for the administrative chaos and complete lack of response to any of my phone calls. I'm not quite sure why having a Department Chair would have made answering the phone or returning a phone message any easier for the administrative assistant, but I let that go at that point. 

I sat and patiently filled out the 6 double-sided pages of paperwork that needed to be completed (questions like how he had developed up to that point, did he have expressive language, how many and what words, etc). About an hour later, I walked out of Dupont  with an appointment for Kieran to see Dr. Anne Meduri within 4 months, in May of 2005. 

At this point in time, Kiki had begun to talk a little bit. He spoke his first words when was about 27 months old. By "talk", I mean that he began to identify things verbally: labeling things. He didn't speak to communicate his thoughts or to ask for things for almost another 6 months. 
One of his favorite activities was having a number book read to him. It was one of those preschool numbers board books, with the Arabic numeral next to a box a corresponding number of objects. Kiki would hold the adult reader's finger over the number that he wanted to be read and move it like mouse on a computer screen. He could literally do this for hours, but I usually only indulged him for about 5 to 10 minutes at a time.  The very first words I ever heard Kiki speak were numbers, quietly counting from one to ten, while he was pointing to the corresponding number in that book.  

He was receiving Early Intervention services through our county's Department of Public Welfare, and he was getting about 3 hours a week: two days of Special Instruction for an hour a time, and one hour a week of Speech Therapy. This extremely limited amount of therapy seems paltry to me now, but that's what we were offered.  I somewhat naively assumed that the county knew what they were doing with treatment. They wouldn't offer it at all if it didn't work, right?

Each of these professionals would come in, engage and play with Kieran, with me present if possible, for an hour each time. They were in agreement that autism seemed to be the logical diagnosis. But he continued to baffle them with his rapid ability to learn things, and his eager desire to please them while playing with him. He would easily attach to each new therapist (we went through several), and loved having these interesting adults coming into the the house, each with a different set of toys and books.

After a few months, it had become apparent that it was autism we were dealing with, even if I couldn't find any other children with a pathological progression like Kiki's.  I began my research in earnest.

I read and learned and educated myself on all sorts of therapies and developmental theory. I read literally everything I could find about autism, in books and on the internet. I belonged to lots of different parent support groups and had talked to lots of parents about their particular autism journey. The more experienced and  knowledgeable moms I met were talking about ABA Therapy and lots of it--40 hours a week! One mother was just about to go to Due Process with her son's school district over the proposed IEP, which she was refusing to sign. She wanted 40 hours of 1:1 ABA Therapy and the district was not offering anything close to that. She was clearly a woman on a mission, but I really had no clue what she was even talking about. Her world of acronyms and experience seemed so different from mine.

The most confusing point for me was how different Kieran's autism seemed compared to most other cases I had read about or heard about. None of the Moms I met had a child like mine. Their kids had regressed after first learning to talk, or their kids couldn't focus at all, and couldn't seem to learn at all. While my Kiki seemed so smart. He never regressed, although how he was learning to talk seems completely ass-backwards to me, when you look at it from a developmental standpoint. In fact, it now seems amazing that Kiki learned to talk at all.

Because my boys did not experience any regression, I never really listened to those who talked about Biomedical treatment of autism. I think I just thought that my boys autism was genetic, or was due to some unknown developmental "glitch". I thought that they might "grow out of it" with the right therapy, or at least get better to the point where they would be able learn. One of our therapists would talk about how some children with an autism diagnosis would lose that diagnosis before they turned 5, but she didn't know how or why this happened. And she hadn't personally met of these children herself.

But I continued to believe and hope for the best for my boys.   After all...everyone has a cousin or nephew or some sister's, cousin's best friend's kid "that didn't talk until they were 3 or so, but seems just fine now."

In a one on one setting, Kiki was fabulous. Not neurotypical, by any means, but he could and would engage with just about anyone. But when I put him in a community setting, especially with any other children around, he would completely check out---I now realize, because he was so overwhelmed. He would stim or fixate on a toy, or just run around and make noise. 

I tried infant/toddler storytime at the local library for a couple of weeks, and I thought the musty old librarian was going to kill us or commit hari kari. She would roll her eyes and tisk at Kiki's running around the back of the room, or up and down the aisles of books. She clearly had labeled me one of those indulgent, permissive parents, afraid to tell her child no. She made it really clear that we weren't wanted or welcome there, so we stopped that.

Since that didn't work, I tried to find a preschool that would help him to be around his typically developing peers in a more organized setting--somewhere he would be supported and where he could learn.

We were kicked out of the first program I enrolled him in, one for 2 year olds, and on the very first day of class, joke! Apparently, they didn't like it when Kieran screamed when they took all those lovely new toys out of his hands and made him sit for circle time.   Of course, in retrospect, I was way too honest about his problems. Here I thought I was helping the school to support Kieran when I was really giving them an excuse to not have to deal with him to begin with...he was just "too difficult" and required "too much support."  

In retrospect, this still pisses me off when I think about it. I could completely understand if Kiki had acted this way for more than two weeks of class. But only after the first day they make this judgement call...? 

Our front office had a chalkboard wall,
that we make good use of during our day.
Kiki continued to make good progress with his in-home therapy visits. Our house looked almost completely like a preschool. We had no furniture in the formal living and dining room, so those were our "therapy rooms."  I had a small table and chairs and lots of different toys, blocks and books. He clearly understood the routine when his therapists came to visit and play with him in those rooms. And he was learning incredibly fast. 

Over the course of a two week period in December, Kieran managed to teach himself the entire alphabet. For his birthday, he received that Leapfrog toy where you put one of the 26 letter pieces into this little barn and the toy would sing a song about that letter. "A says aaa, and A says ay, every letter makes a sound..." He played with this toy hanging on the fridge for literally hours at a time. I limited the total number of letters out at any one time to 5, and I  rotated them, so as not to overwhelm him (and also so we wouldn't lose them). After about two weeks, I realized that Kiki was identifying and reading letters everywhere.

In another attempt to get us out of the house and out into the world, I tried a sensory play-group for kids with developmental delays that was offered by Early Intervention once a week. Parents would sit with their child for 10 minutes of circle time and then we were asked to wait in another room down the hall while the 5 teachers, a group of speech, occupational and physical therapists, would run the playgroup for the next 90 minutes or so. After 8 weeks, they told me that they didn't want Kiki back for the next session. He needed to "mature" and perhaps give him time "to learn how to talk and identify things."

This really baffled me, because Kiki did talk. At this point, he could actually read about 50 words. But I realized that once he walked into that room full of 8 other children, he became so overwhelmed and overstimulated, he couldn't do anything, couldn't focus on anything.  

This was yet another example of me trusting in a system with professionals that really had no idea what they were doing. Here was a group of developmental professionals that clearly hadn't even read Kiki's file that had been compiled and sent over from his home therapists!  This was yet another playgroup we were essentially kicked out of, and this one was supposedly developed for kids just like Kiki! That was a particularly low and frustrating time for me. That's probably when I really began to understand that the professionals running the education system didn't automatically deserve my trust and respect. They didn't understand autism any more than I did, even though they has supposedly gone to school and studied it!

So in May of 2005, when Kiki was approaching his 3rd birthday, we finally went in to meet Dr. Anne Meduri at A.I. Dupont. Dave had come to the appointment with me, and we both decided that we liked her very much. She was patient and thoughtful, thorough and empathetic. She didn't profess knowledge that she didn't have and she was very up front in admitting that she didn't understand autism, although she was seeing it and diagnosing it on a daily basis. She didn't know why some children learned to speak and others didn't. She didn't know why some kids stimmed all the time, never stopping even as adults, and others seemed to stop around puberty.

She ran a battery of developmental tests and asked me a ton of questions. She did a vocabulary test and found, at just under the age of 3, he had parts of the vocabulary of a 6 year old. He had a particular interest in animals and nature, which were the questions he kept getting correct just often enough to continue the test long beyond when I thought it was productive.  He would get confused when she would ask him to do some activities, but he remained engaged through most of the hour and a half appointment. 

She diagnosed him with High Functioning Autism, because he clearly was bright and had a good ability to learn. She agreed with me that he needed to learn how to regulate himself in a group setting. She and I talked about the upcoming transition of services for Kieran when he turned 3, and moved into the realm of the School District.  She wanted us to bring him back the following year, so we could see how he was progressing. And perhaps most importantly, she also gave me her office phone number and email and said I could contact her with any questions or concerns. And two hours later, we walked out of A.I.Dupont and went home. 

A lot of parents report feeling despair the day they receive that official autism diagnosis, but it was really just another day to me. I knew of Kiki's autism almost a year before we sat down with Dr. Meduri. The one thing we walked out of that appointment with was that written diagnosis, which would qualify Kieran for Medical Assistance and hopefully more help. But really, that was it. We didn't leave with any medical directive, or any offers for research opportunities, although I made it clear that I would be willing to participate in any research Dr. Meduri was doing or knew of--which was none. I got the sense that she was busy enough with simply the day to day running of things at DuPont. 

We left DuPont Children's Hospital knowing exactly what we knew when we walked in two hours before. Kiki had autism, and no one knew why. 

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