Tuesday, July 21, 2009

Assessments, assessments, assessments...

I ripped the plastic off a folder and thought to myself do I really need one? I stuck in the few appointments and the blood test results and a couple of hundred empty plastic pockets. Labelled a few file dividers with various assessments I knew would happen under the Assessment of Need and stuck it up on a shelf. I really didn't think that less than a year later that folder would be full and I'd be looking for a bigger one!

Munchkins first assessment was her speech and language assessment. We went in not knowing what to expect. The assessment was extremely thorough and even though Munchkin now could say some words and had a small amount of language, she fell very behind in the tests. Her receptive and cognitive was atrocious. She had some echolalia and could label about 10 items from cards at this point. The SLT said that she needed blocks of therapy and would do right into adolescence. Words like pragmatic language therapy and Floortime and Earlybird were floating around the room. I was given a list of targets to put into her program and sent on my merry way with application forms for Earlybird.. I still a year later haven't heard back from the therapists who run Earlybird as they have been on maternity leave and once again the HSE didn't apply cover for them... I often wonder where Munchkin would be now if I hadn't been trained as a tutor and think often about parents who are left in this limbo.

Second to come was the occupational therapy assessment. It was ascertained that her gross and fine motor skills were excellent but her sensory problems were causing her a lot of trouble. As I talked with the occupational therapist, Munchkin colour coded all the pegs on the board with all the green together, all the red, all the blue and so on. When we looked at what she was doing, we both actually laughed out loud. The OT armed me with lots of exercises to do with Munchkin but warned me that she wasn't allowed to "give me a program" but not to worry, her report for the assessment of need would be so detailed, I would be able to extract a program myself. She put Munchkin on the waiting list for OT but warned it would be at least two years til she'd be seen again! As the assessment of need still hasn't been completed, I don't' have access to the report so have had to rely on what I remembered from the assessment and get ideas from other autie moms and dads (where would we be without each other!)

Next assessment was the feeding assessment where it was decided that her feeding problems were all sensory and not behavioural. Once again I was given some ideas to try with her but little else. To this day, feeding is still a major stumbling block with her and she still cannot drink out of an open cup. OT apparently will help but when?? I was given details of chewy tubes, electric toothbrushes and a list of websites to look at for oral sensory equipment. We still have problems with "sticky" foods and foods that require chewing but we plod on...

The psychology assessment still hadn't happened by the August so it was time to get the money together to go privately.....


Joeys mum said...

hi petunia, great as always.....
My son still drinking from beaker....

I totally agree, all those parents out there left in limbo..hanging on the words spoken by the HSE & never followed up on.. Thank God you can run programmes for Munchkin, shes a lucky, lucky girl to have you! xxxx

Irish Mammy said...

Such a cutie, what a great smile!
Wishing you great success with your campaign and a blog is a great way to highlight your issues.

Lisamaree said...

See now this is exactly what is wrong with the new self assessment system for DCA! (okay I have a wine glass in hand but it is 11.30pm)
You as a parent are delighted to hear Munchkin using "a little language" (as are we all)
But Area Medical Officer knows that at age 2 a typical child has in excess of 200+ words, which are used in context. (I made that up but you get what I mean)
So how do you know what to emphasise???

As for your folder missus. I match you around 7 lever arch files and 4 collapsible storage boxes. Thats why we needed an attic!


Casdok said...

Yes we plod on and the files grow bigger!!

Jean said...

great writing petunia! it's such a familiar road...and yes, thank god you were already trained XXX

Nan P. said...

Hi Petunia,

Reading your blog and others confirms my opinion that there is something Very Wrong with our health system at all levels... How can any parent be expected to wait one year, two years, more, for assessment of a need that must be addressed NOW. Irish parents of Special Needs children have is very tough! And as a society, we have allowed it to happen.... Shame on us!

Thank you for adding to my education.

BTW,I have meant to say before this: Munchkin is such a little cuttie! :-)

Anonymous said...

Hi, found you via Casdok.

We shouldn't have to think about going privately should we, the care and support should be A1 and our children should be entitled to it no matter what.

My daughter is 9 and has autism.

CJ xx

Petunia said...

Thanks again ladies and Crystal Jigsaw, welcome. You are right, our children deserve A1 care and it shouldn't be all up to us to provide it without support!

NanP they finally contacted me and have promised to finish the Assessment of Need in September. While talking on the phone they informed me that you "don't actually get a diagnosis" from this process.... WTF?? How many people are going through this process waiting for diagnosis at the end to put services in place... There is something seriously wrong with the so called powers that be in this country!

Hammie, I am delighted that Munchkin has come on with leaps and bounds since her original SLT assessment and now has in excess of 1000 words, full sentences etc but that's no thanks to the "services" she should have gotten... She does however still have communication problems that need to be addressed which hopefully her new school in September can help with.

Jean, Casdok, Irish Mammy and Joeys mum thank you for your comments. It's lovely to get feedback xxx

jazzygal said...

Well done Petunia.

The sorriest part about this part of your journey is that it was during the end of the Celtic Tiger. No guarantee of diagnosis?? No guarantee of INTERVENTIONS! That is so awful.
Thank God you are so well equipped...but...pssst...don't let on to the HSE!! It is not easy to be the parent and the tutor.

Well done again....and keep going. XX Jazzy

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