Friday, 30 March 2012

Funny Sort of Week- Part 2: Disappointment

Earlier this week we received the Educational Psychologist's report which was fantastic. The Ed Psych had written such an accurate account of River & since the assessment was made at home she had been able to see the 'real' River if you like. A copy was sent to the Paediatrics department ahead of our assessment today.

So our long-awaited Paeds appt finally arrived, 3 months after we were referred, & today we headed off to Musgrove. We've been trying to prepare ourselves for it over the last few days but it's been so hard to know how to prepare. Since it's quite rare to diagnose before the age of 2, we had to be prepared for them sending us away for a few months. On the flipside, there was a chance of River being diagnosed on the spot- I know a couple of people whose children were diagnosed before 2, & the Ed Psych said that she was aware that the doctor we were seeing had diagnosed another boy of a similar age to River. I'd googled the doctor & he seemed pretty good.

So- we arrived at the hospital & River was weighed & measured (being stripped of all your clothes & held down on a cold surface to be measured isn't enjoyable for anyone, & River certainly wasn't impressed by it!)
Then the doctor called us in. Except it wasn't the doctor we were told we'd see. Hmmmm, I thought.

So he asked about our concerns, & I gave him a print-out of River's autistic characteristics & discussed everything. I said that we were 100% sure he was on the spectrum. The doc listened to his heart, checked his knee reflexes & measured his head. He then told us that his weight, height & head measurements were all in sync. Great. I could tell that from looking at him.
He then said, "I see you've seen the speech therapist." "Yes, & the Ed Psych. You should have her report too," I said.
"Erm, no, it doesn't look like we do. I'm sure it'll be with us in a few days."
Bloody great. They obviously have it as we've received our copy. So the one person that really 'got' River & seems to be on our side & actually agrees with us, & the Paed hasn't even looked at her report. I'm annoyed with myself for not taking our copy- but it never crossed my mind that they wouldn't have it.

He then went on to say that he completely agrees with our concerns, & would agree that River has a significant speech delay & some behaviours that are a cause for concern. He said that there are certain assessments that they would need to do before diagnosing that River is too young for & would need to grow before they did them, & for that reason they would not diagnose until 3.

3. 3 years old. 3 bloody years old. So after initially suspecting autism at 15/16months, we'd then have to wait double that time (and then some) before a diagnosis.

This is when I got a bit emotional (I'm annoyed at myself about that too- I wanted to be calm & collected but instead was crying!) & I basically said, "I understand that you want to be sure before diagnosing, but I am sure. I have spend hours upon hours researching- not just autism, but sensory processing disorder, ADHD, development delay- and I know he's on the autistic spectrum. It is possible to diagnose before 2. Even if his development improves, it will not cancel out his autistic behaviours. Everywhere you look screams about early intervention, but when we try to get early intervention we're told to wait?? "
The doc then seemed to feel a bit bad that I was crying(!) & said something along the lines of, "It's not that I don't believe you at all, we just want to make sure that he gets the right diagnosis as there are many similar conditions like SPD, development delay. (yes, I know I'd already told him I knew about them & don't think River falls into that category) I can see that River does have major development delay (hang on, I thought you said speech delay, now you're saying major development delay?) so I will refer River to our autism specialist as autism is what she sees every day, but to diagnose we would do a joint assessment, it wouldn't just be a Paediatrician."
"Yes I know, we've also had the Ed Psych & Speech Therapist see him."
"Yes, I'll hopefully get the Ed Psych report soon."

Grrr. I knew he would need a multi-agency assessment before the diagnosis, & that's why I self-referred to speech therapy. That's also why I self-referred to Portage for the Ed Psych assessment. That is why the Ed Psych thought River may get diagnosed today- because the other assessments had already taken place.

So I asked him how long it will be before we can see the autism specialist. "At least 3-4months."
We've already waited 3 months for today's appointment! And for what? To be told that he's a healthy weight & height? Fantastic. Today, we should have seen somebody with the ability to diagnose. Instead, Tim has had a day off work and we've gone through the emotional turmoil of preparing for a diagnosis, all for nothing.

We need a diagnosis. There is help available for River without one, but having one will open a few extra doors for him. And- perhaps more importantly- a diagnosis will help Tim & I accept it, realise it's not all in our heads, realise that the way he is is down to genetics & not our parenting, & can get our sadness out of the way & focus on the positives. Whereas now, we're having to focus on the negatives all the time to 'prove' that River is autistic when we're desperate to focus on the positives & show everyone how amazing River is. Xx


  1. I'm sorry to hear that you've had such a frustrating day!! Maybe when the appointment arrives you can call the department and ask them to notify you of any cancellations that way maybe you will get seen sooner. You have to remember what a great job you are both doing for River the majority of parents are probably not as well informed as you guys hence you picking up on it so early love to you all Kate x

  2. you should demand to see the doctor you had appointed for, so rude of them to change it last min and mess you guys around! cant they understand how stressful it must be allready?! hopefully with the report you already have from Ed psych you can use that to get more help, at least it wont be just 'your word' you do have a professional on your side, hang in there hun xx