Wednesday, 30 November 2011

What a Circus!

Yesterday saw my son and me jumping through hoops yet again.  Why?  Because we would like him to have an aide at school next year!

As I wrote recently, he has Down syndrome.   I would have thought it would be perfectly reasonable to expect him (and the school) to receive some extra help to learn.  We have chosen to send him to our local mainstream school.  Not only will two of his sisters be attending this school, so will most of the children that live near us.  Master six will be living in a mainstream world so it makes sense to us that he be a part of it during his school years.  He needs to develop relationships with people in our area, just like we all do.

Master Six as a toddler
So........ Our state government required him to sit a test with a psychologist to prove that he has an intellectual disability.  I found it a very emotional day.  I know he has an intellectual disability, every one else knows he has an intellectual disability but we had to PROVE it.  How demeaning to my son and our family.  All to make sure the government aren't wasting their money.  I can't think of a single good reason that anyone would pretend their child needed extra help!  If a parent is looking for support, they probably need it.  And shouldn't every child be given all the support they need regardless of whether they have a disability?!

I know that there is not a bottomless pit of money but I know if they allowed me to choose how our tax was spent, we could cover our sons needs and still have some left.  What is with our government and catch cries!   ' Every child, every opportunity.'  I don't know if this is a federal or state slogan, but this catch cry seems laughable.  Should they say 'Every child, every token opportunity!'?

They need to also consider that it is money well spent.  Our aim is that he be a contributing member of society, has a job and pays taxes just like everyone else.  We may need some help to get to this point but eventually they would recoup their costs.  I am scared that they will decide he is too capable to receive the funding because of all the work we have put in so far.  Not fair really!

So Master six sat and answered questions, had pieces of paper put in front of him that brought tears to my eyes because it seemed so cruel.  "If the symbol is in this row, tick it.  If it is not in this row, tick the question mark."

Master Six as he is now.  Typical little boy!
Anyway, the mixed emotions were incredible!  I so badly wanted him to have a normal IQ and prove how amazing he is, and I desperately wanted him to fail the questions so that he could have his aide!  It is a lot to put a family through.  It felt like an emotional roller coaster!

And the result.....  my son now officially has an intellectual disability.  Well what do you know?!  Does this mean he gets an aide?  No!  He is now eligible to apply.  They look at all his reports and decide whether THEY think he needs one.  I felt like I was on a quiz show.  "Congratulations, your son has a disability!  You are now eligible to go into the draw for A NEW AIDE!"

Master six will be fine.  We have a great little school which will offer him the help he needs, even if he doesn't end up with an aide.  We are very fortunate and hopefully next year will be fabulous for him.  It just upsets me.  I am usually proud to be Australian, but processes like this one seem so unnecessary and demeaning.  I wish all our political parties showed people respect!

This year we have travelled to a centre that has an early intervention program.  We do 400kms per week to access two sessions.  The centre is fantastic and the staff are knowledgeable and enthusiastic.  We have seen him grow in leaps and bounds with their help.  Let's hope the Department of Education and Early Childhood Development consider my son worth spending some time and money on!  It would be a great support to my son and to our little local school.

Now sorry, but I must be off to limber up.  I need to be in fine form to make sure I'm ready for the next set of hoops I'll need to jump through.  Heaven knows what they'll throw at us next!


dixiebelle said...

Oh goodness. I am almost in tears at the trauma you were put through... what a dilemma you must have felt! It disgusts me that we have a system that would do that to a child. I hope he gets the aide for school & has a wonderful time, learning heaps and doing you proud.

That first photo of him as a toddler is so gorgeous & sweet, but the second one as he is now, well, he looks like a cheeky little fella, who will be the light of the classroom!

Busy mum of 3 said...

Through my work, I frequently encounter people who are ripping off the system no end. I don't know how they do it. It makes me angry too, that people who genuinely need the help have to go through so much to get it. Good luck.

Dani said...

(Hug) from me to you, Linda. "They" know no better.

Evi said...

Dear Linda, you make it sound quite funny but I know how your heart must be heavy - not only knowing your baby has special needs but having to prove it to get any help. How is this so? Are 'they' blind?

A dear friend has a very special child and I see her struggle daily, both with her daughter and also trying to get help. I can only listen and help in small ways and I hope you have some one close by to do that too. x x x x

Kim said...

No, is not right . I am afraid as a teacher I have seen too many parents go through this very thing. More often than not the one thing these wonderful parents want to avoid more than anything is a 'label' on their child , but governments will not provide funding unless that box has been ticked. I don't know what the right answer is but I do know that you have been through alot in this process and my sympathies go out to you and how you are feeling.
Just remember that the lovely people that end up working with your child are not in the box ticking catergory and will see him for who is . All the aides I have ever worked with know their little students inside and out , what makes them happy , what makes them sad and you will form a special relationship with the aide too because they care about your child so much.

Linda said...

Thanks everyone for your kind thoughts. I often wish more people out there realised how much we have to fight against the very people who claim to be helping us. I used to have no idea and assumed all kids could access the help they needed. Thanks for listening to my rant.

Tania @ Out Back said...

I agree with you. How insensitive to you and your little man!

Wishing you all the best :)

Stitchin' time said...

It seems awful that the advantages you've given Master Six by making him capable of caring for himself may be their own handicap to others helping him advance through life! All because of a few ticked boxes :(.
Hoping the "Aide" application is successful and you receive a wonderful person that Master Six justs 'clicks' with who will help him make his life more wonderful.

Mrs. Mac said...

Hi Linda, I'm popping over from Eco Footprint. I have a son, 15, with Down Syndrome. Getting services can be a roller coaster especially in today's economy. Kim made some excellent points. You are your son's best advocate. We have had great success within the special ed. class and mainstreaming for social activities such as P.E., music, etc. Our son had behavior and sensitivity issues (noises, etc.). that made the smaller class a better fit. Having a label doesn't change who your son is .. but it will get you on the road to better services. We once got a referral from our pediatrician for behavior intervention .. that ended up being paid for by our medical insurance .. and worked wonders. I have some posts dedicated to our son Nathan on one of my blogs if you want to visit: (check the side column under 'Nathan' .. Just remember .. the squeaky wheel gets the oil :)

Linda said...

Thanks Robyn and Mrs Mac. Yes Kim had a good understanding of what we are going through and made some great points. I had a look at your blog Mrs Mac, and you are doing a great job with your lovely boy. It sounds like you are very good at identifying problems and working on them.

purplepear said...

I know a little of what you are going through. I worked for six years with 2 children who are intellectually disabled, one with Down's Syndrome. I loved my work and we were lucky that the school (A Steiner school) were prepared to have me there full time with very little assistance from the government ( something like a $3000 a year) But once the boys reached high school it just became too difficult for the school to continue financially and the boys have had to go to special classes at their local school. What they got from the Steiner school was total integration, and the school community was blessed with these 2 beautiful boys. We felt very lucky to have them with us, and very sad to let them go, but no help from Dept. of Ed.

Tania said...

Hoping that you get a good outcome out of this. It is so unfair that the government is putting families such as yourselves through all this unnecessary red tape. Wishing you luck :)

Linn said...

Hi Linda,
Your post had me in tears just remembering our past.
We went through the same thing when our daughter with Down Syndrome started school. She was mainstreamed for the first three years with a 'little' aide time but then it all started to fall apart because of lack of 'funding' and after several other school placements we finally found the right school for her (a special school) where she stayed until she graduated from year 12 only last year.

I also remember when she was about 14 years old that we had to prove she 'STILL HAD DOWN SYNDROME'. Can you believe the ignorance of some government departments!!

We are now faced with the same situation with our 6 year old who has VCFS. I thought things would have changed for the better in the education system but sadly not. He doesn't speak and has learning difficulties and does not 'qualify' for any aide time either so he will be going mainstream with our other children at their small private school. I'm not sure how long it might last but I am hopeful it will be at least until the end of infants.
My heart goes out to you as I know the struggle you are having and I hope things go well.

Darren (Green Change) said...

We've got a daughter (10 yo) with Down Syndrome, and have been through much the same thing as you so I can fully relate.

DS is a genetic condition, so I don't get why there's any need to test and retest our kids! It's not like they're going to wake up one day and be over it.

I know of other parents that have been through several rounds of testing. They'll get the "needs help" diagnosis, so they get funding for an aide, then their child improves to the point where the next test says they no longer need the aide. Of course, without the aide, they slide again until the next test again says "needs help". It's a stupid, broken system that wastes time and money on stuffing parents around, rather than on improving outcomes.

I'm often thankful Grace has DS and not just some unspecified intellectual disability. DS is so common that most government departments, doctors, specialists, therapists, etc are familiar with it and don't require much further information. It must be so hard when there's no specific diagnosed condition, and you have to keep explaining your child's disabilities and problems with every new person you meet.

Hang in there, and know that you're not alone!

Linda said...

Hi Darren, I don't know how you found yourself at this post but I'm glad you did. I can tell you really do relate coz your words are my words.

I'm always angry that they cut costs only to need to spend more later (at the expense of a child's future!)

And yes, the pity I feel for those whose children have Global Developmental Delay (in other words, we don't know what is wrong with your child)is beyond words.

I was relieved but upset when Buddy Boy was finally receiving Better Start Funding because it was specifically for children with certain disabilities and only of certain ages! Again, all part of their circus. "Your child is the lucky one! You have the 'right' disability!" It's a disgraceful system and I'm hanging all my hopes on the NDIS.

Thank you for commenting and good luck with your own battle.