Home » asperger syndrome » The Start of a Journey

The Start of a Journey

Warning: This is a very LONG and very personal post. I was feeling drained by it before even typing the first letter.

Kaeloo and I are, at this very moment, starting a very difficult adventure. So difficult, in fact, that I wrote this post yesterday and am hoping that you read it while I’m out so there is maybe an hour of buffer between this release and when I have to read reactions. I’m not really ready to face this; it’s an uphill battle.


As you may know from reading previous blog posts, my daughter is epileptic. From the age of two, she has had Grand Mal seizures, and we were told that her medication would make her very irritable. You can read more about this, if you like, here. Anyway, I mention it because Kaeloo is irritable. Very very very much so. She is prone to fits of anger, sometimes tantrums lasting literal hours long. She hits and kicks. She throws her body and self-inflicts pain, too. All of these things we wrote off as side effects of her medication, especially since she started it around the time when we expected her to just be terrible anyway.

We weren’t sure, at the time, whether she would do well in a preschool program. However, we thought socialization would help her get through her grumpiness and learn how to interact more appropriately with other kids. Kaeloo’s teacher was pretty flustered by her. When other kids would sit in a circle and learn songs, Kae would scream and throw fits. She would refuse to participate in activities, and she would get fixated on one toy or one book for her entire two-hour stint in the class. The tantrums got to the point where the director of the school would allow Kaeloo to decompress away from the other kids in her office, which was across the hall from the classroom.

Though it was stressful for the (very gracious) staff of The Yocum Institute for Arts Education, her time in school opened our eyes to other issues. We were aware that Kaeloo was less verbal than Archoo had been at her age, but we didn’t really consider that in itself much of a problem. Archoo had been a completely ridiculous learner. He had about 200 words by 21 months, and he’s never really slowed down in terms of absorption. He now, at age five, can read pretty much anything you put in front of him. He was telling me Sunday about all of the different types quadrilaterals. Did I even spell that right? He can add, subtract and multiply, too. There’s literally one thing in his Kindergarten curriculum that he hasn’t mastered. The kid is, simply, gifted. I’m not saying that to brag; I’m simply trying to illustrate how unfair it would be to compare a child with normal development to one so ahead. We really tried not to do that. Yeah, Kaeloo didn’t talk as much, but she could still talk . . . right?

Well, not exactly. She could imitate words. She still, largely, imitates words. She can tell you that she wants juice or a snack, or wants you to read a story or take her for a car ride, but she doesn’t . . . speak. The other two-year-olds would come out of the classroom, and their mothers would ask, “How was your day?” or “What did you do today?” and those kids would answer. Actually answer. “We did this; we made that; I ate cookies.” Something like that. I tried to ask Kaeloo, “Did you have a good day?” and her answer was, “I haf a good day.” That was the end of the discussion. I’m not sure she even understands what having a good day means, but she can say it. She can say anything.

She’s completely unaware of boundaries, too, personal and otherwise. She will literally devour my personal space. When she crawls into bed with the Murse and I, I end up sandwiched between the pair of them on the tiniest patch of mattress that’s possible for me to fit on. She puts her hands and feet all over me — a favorite is to tangle her toes up in my curls, and she can’t imagine why that bothers me. She will walk up to a random stranger and pet his hair or jump into her arms. She pays no mind to intersections while going for walks. She doesn’t stop and think about that thing she just picked up off the ground before putting it into her mouth. She’s so rough with the pets that I really should consider rehoming them.

Over the summer, some new problems manifested. We had season passes to Dutch Wonderland and Hershey Park. Kaeloo would seek out the number five car on the roller coaster, or demand to sit on the number five swing. She literally pulled children off of the number five carousel horse and screamed all the way through a rocket ship ride where we sat in a different number. It was pure OCD. On rides that didn’t have numbers, she could just enjoy herself, but if there was a five . . . well HOLY CRAP. She’d better be sitting in it. She also would scream and kick and hit and cry her way through the lines. We FINALLY figured out that they have bracelets for children with disabilities that allow them to skip lines. We didn’t use them much. Really, there was only one ride we used it for, and that was the Reese’s Cup Challenge. We didn’t bother with kiddie rides where she’d have to wait through one or two cycles at most to take her turn. We didn’t want to be ridiculous about it, but when she is kicking and pulling and pushing others and carrying on with a tantrum of epic proportions, you’d think they’d like you to NOT be in the line. . . .

The OCD also spills over into her eating habits. Kaeloo will NOT eat a food that doesn’t look perfect. Broken Cheerios, Goldfish Crackers missing their tails . . . these are things that are shoved into the mouth of the nearest person, whether she knows him or not. And an improperly scooped spoon of peanut butter (one of her favorite snacks) sends her into screaming fits. Bed time, tooth brushing time, potty time — these are daily nightmares. She avoids prolonged eye contact. The word “no” is worthy of a complete meltdown, and “wait” isn’t much better. I can usually feel my hairs turning gray throughout the day.

She also has very specific expectations when she makes a request. If she asks Mommy for juice, there’s no way that Daddy can give it to her. She will scream and throw her sippy cup at him and start a full on tantrum. If Daddy hands the cup to Mommy, that’s fine, but she’s only going to accept it from the person she specified. This is often quite ridiculous, as you might imagine.

However, Kaeloo is INCREDIBLY bright. She can sit down with a 60-piece puzzle and do it without assistance. She can solve a problem logically — there’s pretty much nothing in our house that she can’t reach at this point. She also knows her numbers and letters and will tell you (and everyone she meets) that, “Turkey starts with the T. Kankaroo starts with the K.” She’s also VERY funny, which is somewhat different than Archoo’s very serious demeanor. She’s sweet, too, and loves hugs and kisses. And tickles. Lots of tickles. She usually reads/recites letters from right to left, though, and she can even recite her alphabet from memory backwards to P (I suspect that she actually knows the whole thing). That’s not something we taught her — hell, we’d have to be able to do it ourselves to teach her. She can just visualize it backward, I guess.

So, we wrote down all of our concerns and took them to her well visit with the pediatrician on July 29th. We took the same list to her neurological appointment on August 1st. Both doctors agreed: Autism spectrum, most probably Asperger Syndrome. There was SO. MUCH. PAPERWORK. So many hours spent tracking down information to give to the state so that she could start services. So much anxiety as we filled out the behavioral surveys and really saw how she was lacking in communication and social skills. We’re actually still waiting on the state, as it happens. I’m sure she’ll eventually be put into Head Start preschool and receive therapies from BCIU. However, the pediatrician also referred us to Philhaven Center for Autism and Developmental Disabilities, which seems to work a little bit more quickly, so at least we can begin.

And that’s where we are right now. Starting an 11:00 appointment. My mother is with us for support since the Murse has to work tonight. I’ve been a wreck about it. I mean, we weren’t really surprised by the diagnosis, but we’d tried so hard not to see every little issue as a symptom. We weren’t sure where the medication side effects ended and where an actual problem began. We’re serious about caring for our kids, but we’re cautious, as well. We aren’t the type to fret over every boo-boo, and we were hesitant to box our child in with special needs. She has special needs, though, and we’re now going to get her all the services she needs. Period; end of story. And the diagnosis, though soft and requiring more study, is somewhat relieving. We’re not the parents with the spoiled, screaming, misbehaved child any more: We’re parents of a child who needs help and can (and will) get it.

Interestingly, there was a recent study that showed a high prevalence of Autism Spectrum symptoms among those with epilepsy. This whole thing has eaten me up all summer. Some people knew about it, but I’ve been hesitant to really talk about it because there are still a lot of unanswered questions. But the journey to better really begins today, so I thought I’d open up about it. Now, I’m ready for a nap.


One thought on “The Start of a Journey

  1. I thought this might enlighten you or that you would like to read it. The book, “The Reason I Jump: The Inner Voice of a Thirteen-Year-Old Boy with Autism”, has the following praise on it’s Amazon product page:

    “A rare road map into the world of severe autism . . . [Higashida’s] insights . . . unquestionably give those of us whose children have autism just a little more patience, allowing us to recognize the beauty in ‘odd’ behaviors where perhaps we saw none.”—People (3-1/2 stars)

    I don’t have any direct connection to an autistic individual, but I’m still going to read this book when I get the chance. I found out about it from Jon Stewart’s show last night, Oct. 1st, 2013. He interviewed David Mitchell, the one that has brought the book to America. He has an autistic son, and says that the book was very enlightening and that he has so much more understanding of what his child experiences.

    I wish the very best for you, your daughter, and your entire family as you learn to cope with the challenges going forward.


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