What you see is what you get, or mostly, or kinda…

If I look back, now that I know Bean has ASD and ADHD and now that I know what I’m looking for, it’s almost ridiculous that I missed it as much as I did.

The baby and toddler years were challenging to say the least, but as young parents with only one other kid to compare to (Pups of course) we thought (as many young parents often do) “it’s as they always say: ya get one easy one and one not so easy one, that’s just the way it goes”.

So we just went along as if this was all “normal”, as if it was expected that we should be challenged the second time around. We never considered that her actions and challenges might be more then just “challenging second child syndrome”. The more I read about Aspergers specifically, the more I realize that our blissful ignorance might have come more innocently than I originally assumed. Children with Aspergers tend to “blend in” in the earlier years. Especially girls who camouflage themselves incredibly well. Most not showing really obvious signs till around the age of 8 years old or older. 8 being the age the majority of children are diagnosed with Aspergers because they tend to start presenting more obvious AS behaviours.

Still, from an early age we saw that she was….”unique” (a Platypus maybe?).

She always had a hyper energy, and was incredibly easy to set off. Her tantrums were more intense than I have ever witnessed, imagine a 14 month old going beat red for over 30 minutes – screaming bloody murder. It was, at the very least, impressive. She bit other children, that was embarrassing. I had once been the mother who glared looks of “shame on you” at parents whose kids bit Pups – and now I was quickly grabbing my little biter MaGee and leaving the scene of the crime ASAP with a bowed head and a huge “I’m sooooooooo sorry!”

She loved putting buckets on her head and running at the wall (I know you are remembering that scene from Parenthood right about now, well we lived it) – I’m not kidding.

It may very well have been her first “Stimming” action, in fact, it very likely was. Children with Autism often use repetitive and physical behaviours as a method to calm themselves or stimulate themselves.

She also has never been great with eye contact, I guess, but to be honest this was never something that stuck out at us. Actually, I’ll admit that I didn’t even notice, I was pretty convinced she had great eye contact! Maybe we/I didn’t notice because she gave us better eye contact than she did with others. Or maybe it was because she caught on quick to how to appear like you are looking at someone without really doing it. You know, like the way you would mostly shut your eyes (when you were a kid) while pretending to sleep.

I loved doing that.

She has this way of looking directly at you, but not straight in your eyes. She looks ever so slightly down and to the left. I never noticed it before I started looking for it. I wonder now how many other little girls with ASD have figured out this trick? The general consensus is that girls with ASD have better eye contact and focus than boys with ASD, maybe all those little girls are just faking us out!? But I digress…

The defining moments that led up to our getting Bean seen by a psychiatrist were the cluster of more than usual and extremely challenging symptoms and issues that arose around the time she was 4 years old. A reaction, we thought at first, to the birth of her brother. She appeared to be regressing and having intense mood fluctuations. She seemed less affectionate and harder to communicate with. But that was normal we thought, all part of the adding a new sibling to the family. Everybody else thought it was normal too, no red flags went up. As the year after her brother’s birth continued she too continued to get worse in behavioural issues, not better, bringing with it some pretty obvious signs that something more then just the birth of The Bear was at play here. As the year passed the mood fluctuations and hyper energy, the seemingly impossible capability to listen to us or pay attention to us, the intense night terrors and Gastrointestinal issues (that we later discovered were due to a severe intolerance to gluten – very common in AS and ADHD people), the risky behaviours and what seemed like an extremely easily distractible little person all led us to finally decide that it was time to seek some help.

She was 5 `when we first visited Psych #1 at Sick Kids (#1 in our path to a proper diagnosis, not #1 all around psychiatrist).

He saw ADHD and an LD. Nothing else. He told us to remove her from her French school and place her in an English public school, so we did. We followed blindly without a pause, we needed help and he, after all, was the expert. I can certainly see now how that much transition might have affected any small child, no less a child with ASD and ADHD.

After more than a year of trying to get a second opinion through referrals to Sick Kids ADHD clinic, or at the very least a confirmation on this one Dr’s diagnosis, we shifted our sights on CAMH. I started the waiting process.

In the meantime Bean started to get UTI after UTI because of the damage done to her internal organs from her GI issues. The last Emerg Dr to see us told us to switch GP’s and get Bean to a Pediatrician. She wasn’t impressed with the lack of concern or effort put forth in the case of Bean’s GI problems by our GP, he had never ordered any ultrasounds to be done, nor had he performed any exams…

So we got ourselves a pediatrician. She got us into the GI and pediatric urology clinics at Sick Kids for further investigation and they started us on a path to recovery. At first it consisted of only small changes in her diet (take out cheese for example), but as time went on it became clear that this was more than just a cheese issue. She was sent for an MRI to determine if she had a tethered spinal cord, at which point we verified (what we had always suspected) that she was in fact claustrophobic.

Shit.

Three attempts later she was finally given general anesthesia in order to get the MRI done. I’ll just add here that they unfortunately did not listen to me when I told them not to give her gas because she would not be ok with them putting a mask on her face, but to instead give her the needle (since she has extremely sensitive sensory issues…ie: smell and touch as well as claustrophobia, but a high tolerance to pain). Sooooo to make a long story short, we now have PTSD to add to the long list of things Bean has.

Moving on…In the pediatricians office there was an allergist and a neurologist. What luck! We first saw the allergist who confirmed that she had no IgE allergies to any food (yay!) but that she did very likely have IgG intolerances to casein and gluten. He highly suggested doing an elimination diet to find out for sure. Ok, so now we were on a special diet that really kinda sucked till Bean adjusted to eating relatively bland foods and we adjusted to finding relatively yummy replacements.

Psych #2 – the neurologist! (does he count as a psych?). He confirmed the ADHD and said there was something else, he couldn’t pinpoint it so he sent a referral into CAMH and now we were on the fast track to get a diagnosis done by them. In the meantime we went to a private psychiatrist simply because “the fast track” when it came to CAMH still meant a wait of at least 3 to 4 months.

Psych #3 saw no ADHD, though she did agree that she would need to see Bean more than once in order to properly diagnose her. She also agreed that ADHD in girls presented differently than in boys and that it was quite possible Bean did in fact have ADHD as the others had said she did. In other words: she was a waste of time.

Psych #4 and #5 were actually not psychiatrist but a children’s counsellor and a social worker who did our first interview/assessment at CAMH. They observed Bean and interviewed us all together, then the hub and I privately while the children’s counsellor saw Bean on her own. At the end of the assessment they suggested we see a psychiatrist at CAMH for further diagnosis. So we started the waiting game again.

Finally we saw psych #6 and #7 who met with us multiple times and then asked me to fill out an Aspergers test. You should know that I was in no way prepared for this. I was on a mission to prove Bean had ADHD, but I needed to prove it properly – I didn’t trust the psych #1. I also wanted to gain access to resources for Bean and therefore thought involvement in CAMH could/would do so. The AS diagnosis came right out of left field at me. It hit me hard. I wasn’t good with unexpected things. All my research had been on ADHD, I didn’t know how to process this.

Aspergers? Autism!?

At first it sat in my throat like a giant horse pill that I couldn’t swallow. I choked on it for days trying to figure out what this all meant. I finally asked Bean what she thought of having AS and she responded “So what mum? I’m still me. I’ve always been me and I’ll always be me.”

And that’s when I swallowed and took a breath, because you know what? She’s right.

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5 Comments

Filed under diagnosed

5 responses to “What you see is what you get, or mostly, or kinda…

  1. I have always had trouble looking people in the eyes as I can never decide WHICH eye to look at – I am not able to look at both at the same time!

  2. Pingback: It matters | Deceivingly Normal

  3. Pingback: It matters | Deceivingly Normal

  4. Pingback: Celiac, you’re breaking my heart. | Deceivingly Normal

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