|Hey you, wanna fight?|
This hen was giving me the evil eye, trying to stare me down into letting her out.
Many of you know that since the day Liam was born he has had plenty of difficulties. First it was poor growth finally labeled as failure to thrive. Then there was severely delayed development pretty much across the board. But while he failed to meet milestones and expectations, he certainly made up for it with his gigantic personality. He could brighten the day of the gloomiest of Eeyores. His sweetness is so magically delicious that he could charm Lucky right off of his cereal box! His bubbling enthusiasm for all things under the sun has oft been paraded around schools and doctors offices in attempt to spread cheer and happiness, and the contagious smile plastered to his face wins the heart of just about any innocent bystander. He is truly a special little boy.
He has made so much progress in his special education classes that they started struggling with what goals to give him this year. He was discharged from PT and OT earlier in the school year and his speech therapist has only kept him on because he still gets so excited that his rapid fire talking can be difficult to understand. So, I must admit that it came as a little bit of a surprise that at his 5 year check up his doctor really felt we should reevaluate him, mostly due to his continued communication delays and microcephaly (a.k.a. a very cute little head) but also for some of his peculiarities.
In March, we met with the developmental pediatrician's nurse practitioner who felt that although Liam has certainly made some huge gains, we should really go revisit all the specialists we have already seen, and a couple we have not: the Geneticist, Neurologist, Psychologist, Audiologist and Endocrinologist.
I was super excited because I wasn't sure how else to fill all our free time right smack dab in the middle of marathon training....ahem....
So, I made phone calls, talked to intake people, made appointments, called insurance, got price quotes, and all that other fun stuff. And here is how it has played out thus far:
Geneticist: Apparently his genes have not changed one bit. Crazy, right? ;) She reviewed the history, did her exam, loved his willingness to participate, took some blood from both of us and told us she really thought we should get in to the endocrinologist as well as have a psych evaluation, confirming the other recommendations. (And just for the record, Liam must be the BEST five year old who ever had blood drawn, and I mean EVER! It so didn't faze him that he thanked the lady on the way out!)
Audiologist: He still has perfect hearing, that is, when he shuts up enough to listen.
Neurologist: Yep, Liam still has a small head. The Neurologist confirmed it. He was the most warm and caring doctor I think we have ever seen. He was like a grandpa bear, full of sweetness in his voice and wisdom and knowledge in his thoughts. He basically said there wasn't anything he wanted to do at this time. Liam still has microcephaly, but is just barely under the second percentile. He has not regressed in any development, which is a huge plus. He has made big strides in learning and has proven to be a pretty intelligent little lad. I asked about repeating the MRI and he said that he was fairly certain that his brain was still the same as it was three years ago, just a little bigger but not as big as it should be. He did confirm what we already heard, that at the first MRI not only was his brain small but his midline cerebellum (or whatever it is that controls coordination, balance etc.) was even smaller than the size of his brain which of course is why we have seen such delay in his motor development. But, it won't prevent him from being functional in the world. After all, when was the last time you had to hop on one foot?
The Neurologist's basic assessment was that whatever is going on with Liam is very much a part of his brain development but that we will probably never know what exactly that is, or what caused it. He believes it was just the way he was made and that we just need to keep working with what we have. So, he recommended that we keep doing what we are doing and get in to see the endocrinologist.
Psychologists: It was quite a nightmare trying to figure out the behavioral health piece. We don't have behavioral health covered under our insurance, we got denied for coverage when we applied, the hospitals in the area offer no out of pocket discount, the places that do offer discounts book 5-7 months out or not at all! It was crazy. So, we went ahead with the Children's Hospital where he was already in the system. When we got there, an intern came out and introduced herself. Red flags went up. I was very disappointed because Liam is not an easy kid to figure out. He has all sorts of quirkiness but he is also super social and extroverted. He laughs a lot, he looks you in the eyes, he can calmly play with certain things for an hour or he can have trouble sitting still long enough to eat one bite of food. (I can't understand why the poor growth!) I was not comfortable with someone fresh out of school doing the evaluation for this. Maybe she'd be just fine but I still felt that years and years of experience would help with a child like Liam. But, we were there so off to her office we went. Liam tried to grab her hand on the way to the room but she did not see it, so I thought, so he just followed behind her. Turns out, she had seen him reach for her hand and just denied him. Seriously. Now, I get it that if he were 15 or 17 or an adult that perhaps you would cold shoulder that attempt, but a cute little 5 year old? Sheesh.
The rest of the appointment went something like that. Liam played with blocks but instead of building, he recreated a soccer game: blue squares were the LA Galaxy, yellow triangles were the home team, there were two couches set up for the goals and he used purple cylinders to keep score. It was already two to one when he interrupted to tell us about it.
"Does he ever just play with the blocks?" the intern asked.
"Define play," I stubbornly requested.
"Well, does he ever play with blocks like other kids would play with blocks or is he always recreating something he has seen before?"
Uh, isn't that what other kids do with blocks too? Recreate things they have seen? They build a house. They build a castle. They build a box, a road, a tower.....all things they have probably seen before, yes? The only difference I can see is that Liam was being pretty damn creative in what he was building! But then, that is defensive mom coming out.
"Um, I don't know," I said honestly. It had been a long time since he played with blocks actually.
After an hour of answering her questions, we made an appointment for his 3 hour eval and went home.
I was very unhappy with the intern's mannerisms and didn't really have much faith in her evaluation. She was cold and treated him like a specimen to be studied, not a human being. Never once did I meet the supervising psychologist. Maybe that would have changed things. Maybe not. But as luck would have it, the day before we were supposed to go back for the full eval, one of the highly regarded behavioral assessment places in the area partnered with one of Liam's preschools and we were able to secure the very first opening they made available. That evaluation took place just this week.
I first spoke with the psychologist on the phone. She and her partner would be coming out to his preschool and doing the full three hour evaluation right there on site. They had both worked with this group for over a decade and after just a few minutes on the phone, I knew this would be a good match, that Liam would be well cared for while alone with the practitioner.
When we were walking into the room, I noticed that Liam still had fried egg yoke around his mouth. I grabbed a damp paper towel and cleaned off his face. Now, most kids don't like their faces to be cleaned off. But for Liam, it is downright hysteria. He has such sensory issues around his head and face that even a little wiping of the mouth sends him into an absolute fit. And thus began their note-taking!
After a few hours with us they said that without a doubt they felt Liam was on the Autism Spectrum. The practitioner told a story of her time with Liam. Apparently, she showed him a picture of a picnic table with a family eating around it. She asked Liam to tell about the picture.
"They are eating," he said, turning the paper over to see what was on the back. "But look! A TWO! There's a 2 on the back! What's the 2 there for? Do you see the 2?" And so on and so forth.
"Yes, that's a two," she said, turning the paper back over. "Tell me more about the picture."
"They are still eating," he said, turning it back to the other side. "Loook! The 2 is still there! See it? See the 2? It's a 2!"
And so it went with every. picture. she. showed. him. (He must have been in heaven with the plethora of numbers to look at!) But, they nailed him. That is him. He has very specific interests, he doesn't deviate easily from them, he is distracted by them and nothing else will do. And fortunately for us, he finds everything to be so joyful that even a number two can cause the entire room to smile.
They explained the three currently recognized diagnoses and told me that the one they felt best fit him was Aspergers Syndrome. They actually called it Atypical Aspergers because kids with Aspergers do not usually have early speech delay. But, there are apparently enough kids in this group that there is ample material out there referring to High Functioning Autism (basically Aspergers with speech delay.) The psychologists told me that it was all about to change this month with the new DSM when it would simply be ASD (Autism Spectrum Disorder) scaled for severity. I am assuming Liam will be considered mild on the severity scale. He is very functional, has good foundational social skills and makes consistent progress. As an enthusiastic extrovert, he is not the picture most people conjure up in their minds of someone on the spectrum. As a matter of fact, it's only been a couple days and I am already fielding the question: Oh really? So, what's his special gift? (Uh, loving stupid people?)
Seriously people, the majority of autistic kids are not savants. Rainman was a fantastic movie but only a very rare example of what's considered ASD. (That said, I am hoping Liam picks up piano with lightening speed and precision! No pressure kid.....)
But of course, this is still only a piece of the puzzle. It doesn't explain everything, it just gives us a better roadmap for how Liam learns about, relates to, experiences and interacts with the world. As the practitioners put it, if you are driving through Iowa with a roadmap of Nebraska, you are likely to be extremely frustrated and not get very far. When you have the correct map, your chances of successfully navigating the roads go up drastically. (Unless you are my father, then all bets are off!)
I asked some fairly blunt questions about this diagnosis, about whether they freely hand out such a diagnosis to most people being evaluated. They assured me that any more, with the huge increase in autism awareness, that they actually find they are giving the diagnosis to less and less of those they evaluate. They assured me that when people come in with a kid who has a quirk or two, they are very honest with them about whether that is just a quirky kid or a quirky kid on the spectrum. Apparently Liam made the team!
I was so appreciative and relieved to finally have a name for what we saw, to finally have something to look into and focus on that I don't think the practitioners knew what hit them. Who sits there enthusiastically thanking the people who have just given what could be fairly upsetting news. I do! (And Liam does, too. Although I think he was just thankful to be done!)
Endocrinologist: I made the initial call to Children's Pediatric Endocrinologist in mid-March. They told me the doctor would review Liam's chart and then get back to me to set up our appointment because they saw patients based on level of emergency. It had been two months so I called back. The woman on the other end of the line said, "Oh, gee, I am so sorry no one called you back! The doctor reviewed the chart two months ago and decided there was no reason to see your son."
Really? No reason to see him? It doesn't matter that FOUR OTHER doctors and/or practitioners think he needs to be seen by an Endocrinologist? Really?
"So, they just won't see him?" I asked, obviously angry.
"No, the doctor does not think there is any reason to at this time," she said. "You can try again in a couple of years."
"Thank you but we will find someone else who will see him now," I said too loudly, jamming my finger into the off button. (It so does not have the same impact as being able to slam the phone into a cradle....darn modern technology!)
I was livid. So much so that I started choking up when I called to vent to Kurt. After getting my emotions in check, I relied on Google to refer me to another doctor. Within ten minutes, Liam had an appointment with the competing hospital's pediatric endocrinology group.
So THERE Children's Hospitals of MN! Say goodbye to the most engaging patient you will NEVER MEET! You have no idea what you just missed out on....with his special gift he would have LOVED YOU!
But, no hard feelings of course.
At any rate, this is not the end of Liam's story. It is simply a stepping stone along the way. Each time we turn a page, we are not getting closer to a monster at the end of the book (unless Solomon happens to be there) but closer to the sweet, lovable, quirky little boy who lights up a room, touching hearts and brightening up people's lives like he was created to do.
Have a fantastic weekend!