Tuesday, June 30, 2009

Waiting

I'm hopeless at waiting. I blame my mother. I try and help Kit be better at waiting than I am. I hope I succeed.

Yesterday I felt a bit out of sorts all day - more as the day went on. In music I had to be 'teachers aid' to Hannah quite a lot as the lessons are getting a bit harder for her now. She still has fun but I was out of sorts - started to think resentfully of the other parents there - with their one typical child and here I am - no time to sit back and watch their achievements - I have to try and make Kit feel like I am watching him and ready to help him and I have to help Han actually get some of the activities done. I try to be as unobtrusive as possible. I know things aren't good when I start to have these sorts of thoughts. Once we were home I tried to make some pasta dough as I wanted the kids afternoon activity to be with the pasta maker - it didn't turn out... so I did what I had been avoiding - confronted why I was feeling grumpy. Lucky for me just as I was about to deal with it by taking the twins to the park a good friend asked us out to a local cafe with her kids so I was able to chat with her - and you know - anxiety shared is so much better to deal with!

So why was I out of sorts, grumpy and anxious? Silly I know but for the past two weeks I have been watching that letter box. Nothing. I am waiting on the report of the psychologist and pediatrician for Hannah's assessment. I know the summed up result - but I need to see what is actually there in black and white. This is the document which will 'sum her up' to many of those who read it. I want to know what it will say at the same time as I am resenting the need for any such report at all. As usual it won't bring any extra support (well is not likely to!) yet Hannah has to be 'put on show' summed up and found wanting yet again. I know as a teacher that what we say face to face tends to be more diplomatic and 'nicer' than what we might include in a written report - done without the pressure of anxious eyes watching. And so I worry. On Monday the ped rang me because she was trying to finalise the report so it could be sent out. So now I know that the last week's watching was in vain - this week's watching and waiting for the postie continues - I hope it comes today. I want to open it, read it, be done with it.

On Thursday the principal and special ed support person (I really must find out her proper title if the kids go to school in that system) from my preferred school are going to go and stare at Hannah while she is at preschool. Measuring, evaluating - found wanting. Oh I know it is good that they are that interested and that it bodes well for them preparing well for her transition to school but still it hurts. I wish it didn't have to be this way.

On a more positve note I did get in Monday's post a lovely parcel of books from the DSA on inclusive education - these both scare me and give me hope - depending on my mood.

Tuesday, June 16, 2009

Pity Party

I thought I'd better add in a couple of details in the interests of accuracy for the view from the back of the queue - as DH pointed out to me - the 'school of choice' did make an appointment to visit Han at her preschool earlier this month - one which we cancelled - so now we have to wait until they have been (sometime at the end of term I think). I hated cancelling it - it is the only 2 days Han has missed of preschool but she was just so sick poor love. So I still feel like I deserve a bit of sympathy - but he is quite right - the school have said all along that processing Han's application would take a bit longer and they have tried not to delay it - so SIGH I guess I just have to learn a bit more patience.

Monday, June 15, 2009

The View from the Back of the Queue

I took the brats swimming today - they are both in reg classes and loving it. Han has a ball but is going to be in the basic class for quite some time I think. I was chatting with one of the Mums there - her daughter attends the same childcare as the twins. She had applied to enrol her daughter at 3 of the local catholic schools. Anyways - she has been accepted into 2 of them - one the very nice, little bit fancy, very old fashioned one that serves my parish - with a rather terrible old crank of a parish priest and the other one which is the only one I applied to - our school of choice. It made me sad to think - that with her lovely blue eyed blonde haired 'normal' daughter - she has choices. She doesn't have to wait to hear if her daughter is going to be accepted. That is what it feels like I have to do. If I just had Kit - I'd be in her shoes - or if I had 2 'regular' twins. Instead I won't hear whether we have been accepted for at least another few weeks, probably longer. The view from the back of the queue is not that great - watching others amble on in while I have to wait to see if my daughter will 'pass' the test. They've seen her. They know the result of her IQ assessment. Still we must wait anxiously - it isn't fair. She has just as much right as this other little girl to be readily accepted. I wish she was.

Monday, June 8, 2009

The Verdict

I'm using Mark Selkowitz's book Down Syndrome The Facts to help here:
"People with IQs ranging from about 80-130 re considered to have normal intelligence.
An IQ of about 70 - 80 is regarded as demonstrating a borderline degree of intellectual impairment. Such peple usually manage in the normal stream, but have developed at between approximately 2/3rds to 4/5ths of the average rate of development.
Children and adults with an IQ score beow 70 are regarded as having an intellectual disability....t is therefore useful to describe intellectual disability according to its severity.
The following terms are usually used. In each case the eventual adult level of competence is described.
Mild intellectual disability
(IQ range from about 50 - 70) Adults with this degree of disability can usually live independently with little supervision.
Moderate intellectual disability
(IQ range from about 35-50) Adults with this degree of disability will need help with managing their financial affairs, and usually such activities as shopping, cooking and commuting.
Severe intellectual disability
(IQ range from 20 - 35)
Adults with this degree of disability always need a great deal of supervision, although this need not be constant, as many are able to care for themselves in matters such as dressing, eating, washing and toileting.
Profound intellectual disability
(IQ range below 20)
Adults with this degree of disability need constant care and supervision."
pp116-117

So Hannah clearly showed strength in her verbal reasoning skills - using words to solve problems - in some domains she scored in the 'borderline' category. Her non verbal reasoning (mathematical style deductions, puzzles etc) was not as strong and mostly scored in the mild range so that her overall IQ magic number (Which I don't know) falls in the mild intellectual disability group.

So overall it is great news - because it means that there is a lot of potential in her future - the ped says that clinically there is little movement between the ranges as the child grows older, if the first assessment feels 'right' and accurate - then there will probably be little or no change of statistical significance in later assessments.

The negative side of it all is as I feared. The psychologist was very good. She acknowledged Hannah's natural abilities, personality and talents as well as 'our efforts' and the EI Han has been receiving. The negative side of it is that yes - so much of what she can do is simply because of who she is but there is a heap that is a result of the help and therapies she has been receiving since she was 3 weeks old. The gov't slicing of the disability pie means that there will be minmal support and no targetted funding for Hannah - so I will have to watch anxiously to make sure that she can maintain her good performance with less support. I understand that there are others who require greater support - but an intellectual disability is just that and is different for each individual - targetted funding would help focus the type of support she could receive to best help her in the mainstream. Still I am not unhappy with today's results and will continue to lobby and advocate for the best for both my children as they prepare for the perilous quest into the mainstream next year...

Psychometric Take 2

The city is at her feet...
Well Take 2 happens tomorrow - I haven't done any coaching outside of - how old are you? But the little bugger insists on saying '4' (hey that is right - better than the '2' she gave as her answer last week!) but then she almost immediately goes on to 'birthday 5' - which isn't that clear given her speech but means what it says - "I'll be 5 next birthday'. SO I have been stressing that 'H" is the 'boss/teacher and Hannah must listen and use her words. Outside of that - let the dice fall I say - it doesn't change who she is. It is however the pink ribbon on the diagnosis - the labelling of the scary part of DS (once the near death stuff of OHS is out fo the way that is!!) - it is the measuring of the 'intelletual disability' - and in the verdict lies partially the summing oup of our dreams and hopes for ehr - her future poptential - her chance of independent living and her education options... Still - it doens't change a single thing about my beautiful daughter - it might make me sad for her but never about her. She is always who she is - and that is divine. A mystery so sweet that I thank God every day - and would I think reguardless of religion!
Walking up to the local shop I asked her yesterday what street she lived in - she named it correctly and then gave the number - so I know no matter what ehr formal assessment may indicate that not only is she school ready - she definitley has an ntelligence - why on earth would I start wanting her to have a mainstream intelligence now? There is nothing 'mainstream' about our house after all!

Tuesday, June 2, 2009

Psychometric Assessment

Well today I learned nothing and something... Kit had temperatures near 40 all weekend. I obviously caught his virus and was a babbling wreck who basically took to my bed and didn't leave it until this morning when we had to take Hannah for her IQ test. Kit had an appalling night as did DH as he was up to him constantly and that meant also that Hannah had quite a disjointed sleep and I have just given her some panadol as she was quite warm and sooky - a sure sign that things unsavoury are brewing.
Anyhoo ... drumroll... the jury is out. The best the psychologist would say is that her vocabulary is very good. Does any one know how significant or important that is? I don't. Anyways we are headed back next week and hopefully she'll be able to give Hannah a score she is more confident is reliable.

The ped. and the psch were really lovely - and the intro bit where they watch Hannah play and check us for the "How well do you know your child quiz' was actually quite fun - after all I am very proud of little brat and don't mind bragging! I did however say that she doesn't demonstrate bad behaviour and that it is quite easy to jolly her along or distract her. Famous last words - I think we lulled the psych into a false sense of security. Still although not measurable on the wppsi - I think you'd have to agree that there was some cunning there - she kept waggling her finger (sign) and saying 'finished' when she didn't like a game. She also wandered over to the climbing blocks so she could get a better view of her too cute self in the mirrored 2 way window (as her parent i just wanted to reach through that window and tell the little bugger to sit on her bottom!), then she discovered the light switch - that was a fun distraction. When doing the puzzles which she really liked and kept requesting more of - if one was too hard she'd ask for (sign) 'help' - guess they should have told her about standardised testing procedures earlier on. When the blocks were out and she had to mimic patterns in them etc - she kept wanting to build hers with the psychs - I'm sure she thought her new friend was a bit silly and selfish not to want to build something together. And finally, oh so sweetly - she clearly indicated that it was her turn to be teacher and switched the pages of the book around so that the tester became the tested. So yep - I learnt a lot about her sense of fun, her lovely interaction and charm - cos without bias you'd have to say she was a sweetie the whole time - there weren't any tantrums after all. She was also rather good at problem solving and could ask for help when necessary - so I think she is school ready.
I am assuming her scoring will be in the moderate intellectual disability range unless she really cleans up her act by next week. It isn't something that I am going to worry unduly about. They were nice women - I want their expert advice on where Hannah's strengths and weaknesses lie so I can use that to assist me in choosing the most appropriate place for her to commence school at next year.