Monday, July 27, 2009

Well... are you happy now??

In early July 2008, we got called for a full developmental assessment by the Area Medical Officer (AMO). It was an extensive assessment which covered all her physical, emotional and intellectual milestones. The AMO also completed the MCHAT autism assessment on Munchkin and went through the results there and then with me. As we had already had the SLT and OT assessments completed the results concurred with the results that day. During our discussion, the AMO informed me that there was no facility for her to record her observations that day, but rather the forms were a scale and she could only mark and score per se. She actually pointed out to me that as Munchkin had echolalia, she would have to mark that she heard her "talk" and that she had language. I was strongly assured though at this time that her SLT assessment would be showing up her deficit in communication even though she didn't have the opportunity to record her social and communication deficit (beggars belief how the autism scoring MCHAT can leave no room for comment!)

In September, just days prior to Munchkins second birthday, I managed to secure an appointment with "The Professor". Munchkins Dad insisted that he be present for this assessment, and for a time I was reluctant for him to attend. I thought long and hard about it as he was so much in denial then that there was any problem to address, but permitted it as for one, he is her father, and I also thought it may be useful for the professor to meet him! We headed for Dublin on the appointed day, nervous and unsure of what to expect. In my heart, I knew what the outcome would be, but part of me craved and begged to be told I was paranoid, that there was nothing amiss and Munchkin was fine!

We arrived early and sat outside the house, silent. We decided to head to a nearby pub for a cup of coffee while we waited. The silence between us was formidable and I spent the time picking the cuticles on my fingers as the nerves were setting in. When it was almost time, we headed back up to meet the Prof...

As we were ushered into the office, it struck me how child unfriendly this situation was. His office was wall to wall paperwork and books and there were obvious Munchkin attractions everywhere! Instantly, I felt as if the good professor was indeed an expert in this field as he knew it from the inside out so to speak. There was limited eye contact, lack of social graces and a certain brusqueness to our meeting. During the initial few minutes of our conversation, while I was opening up to my innermost fears, I was handed a piece of paper.... I quizzically looked at him and was told "my bill"....

We did a detailed history of both myself and Munchkins dads history which turned up quite a few surprises for me from his side... Then it turned to Munchkins developmental history. He was very in depth with his questions and I answered them to the best of my ability. All the time, Munchkin was lining up stones on the chair, sticking stickers from a magazine I bought her in categories, flapping a little, ignoring anything that was asked of her... but the most memorable thing for me was watching the professor look at my ex as when he's stressed, he sticks his hands in his pockets, but the rest of his arms flap... his mother once told me he's always "flapped like a little chicken". He also explained that he thinks in hexadecimal and other gems.. I also had to admit to such things as I can't stand ticking clocks... won't walk on grass in bare feet.... hate sand... and other such intolerance's....

At the end of our hour with him, he had diagnosed Munchkin on her 18 month review as regressive autistic. He said though that she was in his opinion at this time Aspergers Syndrome. He stated that her mind was extremely logical from what had been observed of her in his office and how mechanical her thinking was (this was from watching her work out his window locks and try each of the keys from his bunch in the locks....) The hours of work that had been done with her over the preceding months, and her reaction to the exclusion diet had been astounding to which he said we were extremely lucky to have intervened so early. The report he was to give us however, would state Autism Spectrum Disorder DSM-IV Regressive Type to gain maximum resources as at her 18 month markers, this would have been his diagnosis after her regression from the seizures. I walked out of that meeting, not shocked, but still feeling like the rug had been pulled from under my feet..

We strapped Munchkin into her car seat and both me and her Dad sat silently in the front of the car doing nothing. For what seemed an eternity there was nothing... not even a sound from the back of the car.. then the words.... "Are you happy now??" Happy???? How in the name of God would he ever think I was happy?? Upset? Confused? Frustrated? Bewildered? Angry? even relieved? yeah.. all of them! But happy?? It was not a case of "nah nah I told you so", but it meant we could move on from here and do what was needed for our little girl and not keep this "is she/isn't she" farce going. The moment I so needed a hug and reassurance, I was getting this mental kicking instead. I wanted to text my close friends and family to say we had got our diagnosis but there was something stopping me. I couldn't write it down or say it as that would make it real somehow. If I could just delay that moment for a while longer I would as saying the words made it real somehow. I thought I couldn't feel any worse but I was wrong :(

It's only looking back now that I realise how difficult times were back then. My life seems so different now and so much richer. I have met some incredible people through my journey and they all have different stories to tell and routes they have taken. I am humbled by their strength and their humility and am blessed to know them. You know who you are :)


paula said...

that reminds me of the same visit, and how life has become so much better since diagnosis(1 yr ago) i feel like i fast tracked through college in the subject of autism/asperger's. you really can only move forward when you say the words aloud. you tell it so well. x

Lisa said...

Wow, what a contrast. While I object to the use "regressive" {the child may regress if they do not get intervention but the autism isn't regressive}
it sounds like the Proff did exactly what you needed, to get the resources in place. And yes, I think he had Munchkin's number when he observed the logic and problem solving! (as you had his with all the books!!! - does he still have rubber bands around the books??)

It was a very cruel way to hear the news - and it is so sad that someone you invested so much time in - simultaneously wanted to blame you while denying the truth; as if going for a diagnosis created the problem!! The luxury of detachment!!!!

You are doing so well for Munchkin - I think her autism intervention is going to be very Progressive! xx

Jean said...

ah petunia! what strength youhave to tell your story so well. Prof hit the nail on the head when he said how lucky munchkin is...and he doesn't sound like a man to mince his words. XXX

Petunia said...

Paula, you are right, you do indeed take a crash course in autism after the reality of diagnosis sets in. Isn't it amazing that in the space of a year you can move forward so much. If someone had said just after diagnosis that we'd be in such a better place a year later, I'm not sure I'd have believed them!

Lisa, I don't like the term "regressive autism" either but understand how it can be used in context as Munchkin had lost all her words that she previously had before the seizures. That piece of paper was exactly what was needed to secure home tuition etc. And yes... there are still elastic bands on his books lol. Munchkins Dad feared being blamed for her autism so much that attack is often the first form of defense. I have since explained to him that to "blame" is pointless, and that blame is only applied when a person does something deliberately to another. Neither of us would have wished this on our daughter so to blame is rediculous.

Jean, you are right there, no mincing of words from the Prof lol xx

SCrosbie said...

Its amazing we all experience all these emotions and go down the same road maybe some take a side road along the way some more than others but we all end up at the same destination at some point in the end because something clicks inside you a gut feeling telling you no somethings not right and I want to know who where what do I do how do I get info and no-one knows their own child like a loving mother does and I have nothing but total admiration for you becuse you are sharing your experience as the way it was every child is unique in their own way and still your given this final diagnosis smack bang hits you so hard in the face its suddenly a reality its not maybe any more is a definite yes. Looking back it was the end of our world the worst emotional time ever but it was support from people like you that helped us on yes we meet some terrible people (would love to say a stronger word) that felt they had a heart of stone and no feelings but the majority of people we meet we owe our gratitude to them

Hua said...

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jazzygal said...

Well done Petunia... a difficult part of your journey to share and you tell it so well.
It's also such an important part of all our journeys isn't it? Getting the diagnosis, how each of us handle it (even when we KNOW what it's gonna be) and how the rest of our families and our other halves re-act. You are very generous in spirit to see his reaction the way you do.

Little Munchkin has had the best start in doubt about that! xx Jazzy

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