Friday, July 16, 2010

Developmental Assessment

On Tuesday afternoon I received the results of Ashlea's developmental assessment.  Let me just say: it was brutal.

How can my gorgeous baby be as delayed as they say???

The test results are just gutting, because I guess tests measure what our kids can't do.  I don't see that.  I see what Ashlea can do.  I see how far she has come, all the great words and sentences she is using, the fact that she is still trying to learn new physical skills in spite of her cerebral palsy.  Tests don't measure sheer determination, cheeky personality or cuteness (unfortunately).

Anyway, here is the summary.

Griffiths Mental Developmental Scales - Extended Revised
Locomotor (Gross Motor Skills) 9 - 13 months
Personal Social (Self Care, Socialisation Skills) 19 - 23 months
Hearing and Speech (Language Skills) 24 - 28 months
Eye and Hand Coordination (Fine Motor Skills) 14 - 18 months
Performance (Puzzles, Construction) 13 -17 months
Practical Reasoning (Understanding Concepts) 22 - 26 months

Adaptive Behaviour Assessment System - Second Edition
Conceptual Skills - extremely low range
Social Skills - extremely low range
Practical Skills - extremely low range

The overall summary puts Ashlea's development on around the 1st centile which gives her the label moderate-severe developmental delay.

I kind of knew that, but still it is a slap in the face to have it confirmed.  It was also the first time someone has actually said the words 'intellectual disability' to me.  The whole time the psychologist was explaining the test to me I was thinking I need to get out of here.  But I sat there and listened, and she kept talking and smiling.

Get me out of here.
You don't know what you're talking about.

Finally we got away.  I don't really know what the full ramifications of the assessment are.

Does this mean she will have a moderate-severe intellectual impairment?

Will she be able to go to the same school as her sisters (in the support class)?

They are all questions for another day.  Today is a day for cuddling my baby and remembering what she can do, not what some stupid test says she can't.


Sarah said...

Sorry to hear it was so hard to hear all those results.

Sounds weird but for me even though I was keen for Violet to have some negatives for her results purely for "funding purposes" it still hit me hard to hear she even has a mild intellectual disability especially when that still means zero funding aswell :(

Does the support unit the school your thinking about cater for moderate-severe kids? Just most of the support classes I have visited are for exactly that criteria.

It would be nice for them all to be at the same school, thats for sure.

I do think you are right in wanting to focus on what Ashlea can do and how far she has come, she amazes me as she does you I am sure. Just have to read her life thus far to see she is a special gem and is so determined!


ferfischer said...

Well, I'll tell you that I think Ashlea is doing AMAZING things. I will jump for absolute joy if Cici does half the things Ashlea can do - I think you're right to think of the things she can do and let the others figure out what she can't JUST in order to get the help she needs. I'm kind of glad we don't have ours summarized like that, even though I KNOW it in my head, my heart would also break a little bit to see it all spelled out like that. Hugs!

Amanda Daybyday said...

My Finleigh's tests were similar last month. I know what you mean. It's hard and leaves me wondering what the future will bring. 1st percentile. blah.

Missy said...

Hate, hate, hate those tests..All the negatives of what our babies "cant" do. It cuts to the core doesnt it. I find it hard not to cry during these meetings. You go in thinking of all the amazing achievements that your child has made and end up with that sinking, swallow me up feeling.
I think for twin mummies as well it also hits you seeing their sibling doing it all with ease. Kind of reminds you of how it should, have, would have been.

I agree Alison, focus on the can do and the amazing achievements that your beautiful Ashlea has made. She is gorgeous, she is cheeky, detirmined and spirited..


Anna said...

Those tests are awful. Ryley has no IQ according to those tests. He is untestable. No matter how prepared I was, it was still shattering to hear those words.

Jiey^Mien said...

Hi there,

I'm from Malaysia.. I also have a child with GDD and the doctors are planning to carry out the Development test on my son in 3 months time..

I was scare to hear that because I know, the test is going to focus on what our child cant do rather than focusing on things that they can do!

Reading your post on this, I know that I'm right about this test!! And you describe my feeling perfectly!!


Marie said...

So glad you are focusing on the cuddling and what she CAN do. ewww...I seriously just got chills down my spine imagining someone doing this kind of assessment with Jack. Big HUGS sent from across the ocean. Let's focus on the positive!!!

Belinda said...

Big cuddles for sure!

Not a great experience I'm sure. You know more than anyone all the amazing things she can do, say, etc:

I like the idea of a cuteness test..... xx.

Big brother, Little sister. said...

Oh Alison I know how hard it is to actually hear and SEE those results that are honestly an indicatation of that moment in time for that particular test which is a standard test that does not take into consideration physical skills/vision/beahviour/personality etc.... FWIW Coopers scores as such from those cognition/IQ/speech things will not be going in his funding application as such just the stuff about physical issues as we are not going for funding in regard to congnition. Cooper had a few gaps in his understanding as a result of having a physical disability so we are focussing on "learning" those concepts that come naturally to so many.
Love to you and give that precious girl a big cuddle from me xoxoxo

Jacqui said...

Alison, I'm with Bron on this. The tests take nothing into consideration when it comes to the obvious physical et al limitations. Your going to find out this more when it is time for school, but so much stuff becomes harder when you have a physical disability. Like distances. And recognition of alphabet/numbers - the rote learning of writing letters and numbers over and over again helps you with the recognition. If all you are doing is identifying the letter on the keyboard - it just isn't the same. I remember sitting through a test with Moo where one of the pictures he was asked to identify was someone doing up there shoe laces. I don't know if you've notice but AFO's don't have shoe laces :-)
Be kind on yourself. This is only the start. Ashlea has plenty of time to prove the psych wrong.

Alison said...

Thanks for all your understanding everyone - I knew you'd all 'get it'.

Kat said...

It is always hard to hear those things :( I knew Ciara was behind developmentally but when we got out first assessment done and was told she was moderately to severely delayed, it was hard to hear. Not much better to hear the second time round either but I do tend to focus on what she can do and remind myself that she is a wonderful, loving child and no test shows that!