An idea

I've been tossing up an idea of making this blog - or creating (another) new one - a community blog where a couple of us with kids w/ dodgy chromosomes can come and share experiences or just brain dump when it all gets too much?

Thoughts?

An update... 1, 2, 3

Oscar loves music. He loves dancing, he loves singing, the boy has a groove. In fact, his head wobble and hippy shake is quite impressive.

For Y.E.A.R.S I have looked for a music appreciation program that would be suitable for him. I thought I found it, but the organisers decided to put all the special needs kids together, so there was Oscar being freaked out by a Downs boy who was just not coping with an after school activity in his first term of 'big school'. I mean seriously people, get some parenting skills. Even I didn't enrol the boys in anything in the first half of their first year at school, I mean, cut them some slack...somewhere. Then, combine that with the autistic boy who just freaked out at anyone coming near him (cue Downs boy running up to him and screaming at the top of his lungs "baaarrrrrrr") and it was really quite a fine play based on the theme F.A.I.L.U.R.E.

This is one of the thing that majorly pisses me off about well-intentioned (but in fact highly discriminatory) "professionals". Oscar has special needs, they are quite unique to Oscar. They are not contagious. Perhaps meet him, engage with him, observe him, and then, using your professional expertise, determine what class and/or setup would work best for him AND you.

Anyway, this wasn't meant to be a rant.

At the end of last term we got a note from school inviting all boys to come along and see the boys dance group and get involved. I noted it was organised and run by the school's Year 6 teacher, who is a l.e.g.e.n.d. (For example, she volunteered to be the special needs coordinator for the school. She doesn't get paid more, she doesn't get anything except a shitload more work and yet she does it. AND she 'gets' it.)

SO - This week is the first week back and I mentioned it in his communication book with his teacher that Oscar would be interested, and maybe they could get Mrs C to ring me. Instead they sent a note home saying Mrs C would be thrilled if Oscar wanted to come along and see you at 8 (this morning).

SO - Oscar has joined the boys dance group at school. He LOVED it. He came home and even showed me some of the moves. Including toe tapping, a delightful turn and some backward walking steps.

The kid is a legend.

Now, not only do we have a child actor, we have a child who has the potential to fight a town for his right to dance.

The dentist

So last week saw us back at the hospital for Oscar's 'regular' dental checkup - I thought it would be interesting as the week prior I noticed he has a permanent molar coming through while his baby molar ain't moving.

Anyway, we're back in three months and I've filled in the forms for Oscar to go in to be put under, which will probably happen early next year. I'm actually OK with this as it's been three years since his last general for dental work. If he needs another round of botox the dentist is happy to work with the CP specialist to have both procedures done under the one anaesthetic. Noice.

How to make me cry in an instant...
On Friday the Oggaboy came home with his communication book we have going
with his teacher and aide. Two girls in his class had written in it:

Today we played volly ball and Oscar scored three or four really good shotes.
By Bella and Claire

My reply is - if any of his classmates want to write in his communication book about something he's done with them during that day - spelling mistakes and all - bring.it.on.

I picked him up early on Thursday to take Mum to the airport. I love getting there unannounced and at a normal time, as it is the best indication to me as to how 'accepted' and how involved he is. They were all at lunch, and there he was, with about 4-5 classmates kicking around a ball. Tops I say, bloody T.O.P.S.

New superlegs

Well, Friday saw us back at Sydney Children's getting new superlegs. We were 45 - yes, f.o.r.t.y.f.i.v.e. minutes late as just as I was leaving to pick Oscar up, Jasper did a massive poo everywhere, requiring an entire change of clothes and carpet cleaning. While I was doing the latter, he got in to a cupboard (that I'd left open) and cut his finger on a broken dish. Blood everywhere, including all over me, requiring me to change as well. Five strips of sensitive band-aid fabric later (he cut his sucking thumb) will blood seeping and him trying to pull it off with his two tiny teeth, we went to collect Oscar.
I go to the office, sign him out, go to his room, get into a conversation with his teacher (who I believe was probably beginning to think I didn't exist) and it dawns on me, oscar isn't in the room. Of course not, he's at gym for sport - on the other side of Narrabeen. I fly out of the school, throw Jasper into his seat, fang-it to the gym and get Oscar just as they're getting on the bus to go back to school.
Hence 45 minutes late.
Don't worry, we were suitably punished.
We were there for 2.5 hours.
There were lots of fitting, cutting back, heating and remoulding, fitting and heating and remoulding some more.
It was painful for all of us (by this point Jasper had chewed off all the bandaids and was just bleeding on every surface he touched, which, when you're a baby confined to a small room, is a LOT).
Anyway, whizz bang new superlegs are here and back on the legs of our super little man.

Amazing

We found out on Thursday that from Tuesday Oscar has a full-time aid. From 9.30am to 3.15pm. Every.single.day. Well, at school that is. I am absolutely dumbfounded. This is like the Gold Amex of the NSW Department of Education.

Today

Oscar got invited to a birthday party of a kid in his class.

It made me cry.

EughGrrrrSigh and Eugh some more

I was reading some posts at a site today I visit every now and then but not as often as I should considering I know how much they read our site and comment to boot.

Anyway, they have a child that is not talking. This is a weird experience. I am going to lay out mine, and how I reacted and that is all this is, mine.

The first early intervention specialist we worked with was a legend. She was also a speechie and was part of a govt service that did home visits. If properly funded and resourced it would have been a kick-arse service. Instead she left because she was overworked, underpaid and stressed - her replacement was a first-year-out-of-uni speechie who was as useless as tits on a bull. Anyhow, I digress. A lot.

This speechie gave me a two-sided info sheet just before she left. As she gave it to me she said, "it is way too early to tell but just keep this in the back of your mind. It is a worst case senario, but it just may be something you have to contend with." Oscar was about a year old at this stage. She'd worked with him since he was 8 months old. I trusted her. It was a leaflet on developmental verbal dyspraxia.

Oscar has profound developmental verbal dyspraxia. If there is a God - which I believe there is and probably more because it is what I grew up with and was indoctrinated with than any other really good reason - dvd is a cruel cruel trick. A mean spirited syndrome that traps its prey and torments them for life.

I hate developmental verbal dyspraxia.

It became patently obvious by the time he was about 2 that he had every single symptom of dvd. Of course, all the professionals we were working with at the time scoffed - "It's way too early to put that definition on him," "you can only determine the presence of dvd at age 7" etc. it strikes me as bizarre and dumb to say that. I mean, if a parent can tick every.single.box. in a "here are some of the symptoms of this condition" senario, you might as well say the kid has the condition surely? Particularly if you know kids with this condition respond to some forms of therapy far more successfully than others. I mean, DERRRRR.

Anyway, over the years I've endured the following:
- oh, he'll talk when he's good and ready
- my sister/brother/aunt/uncle/long lost relative now in an institution didn't talk until they were 8 and they're fine
- don't worry
- he'll be fine
- won't teaching him sign mean he'll never talk?
- you just need to talk to him constantly
- do you think he'll ever talk?
- how will he get by with so little language?
- he's very communicative isn't he.
- gee, you don't want for understaning what he wants or needs do you
and so on and so forth


There were days I wanted to drive a stake through the eyes of people saying these things. Other days it was just water off a ducks back, but man, it confirms JUST HOW STUPID people can be doesn't it.

If Oscar has taught me anything, it's to think before I speak, consider my phraseology and just stop before asking something that might seem innocent to me, but is laden to someone else.

Because here's the gig:
- everything is not fine
- I have no fucking idea if he will ever speak normally, and at this stage I suspect not
- Yes, he communicates because speech is only one small part of how we make ourselves understood in the world
- If I talk anymore to anyone my head may well fall off
- and NO he will not talk when he is good and ready because he CAN'T

What we found that worked for us was:
- therapy in as least-stressful-a-setting as possible, particularly when he was younger (ie pre- school age). That meant either with a therapist working from their own home, or a therapist coming to you. It meant speech therapy involving his brother and involving games and play. As soon as there was any attempt to make him say sounds or words on demand, he'd just shut-down.
- someone said, "you will hit a therapy wall somewhere between 3 and 4". And man, did we hit that wall. It was the hardest decision to make - to step back from speech therapy for a child with obviously significant speech issues, but his development was going backwards if anywhere at all, my happy only-wanting-to-please child became difficult and non-compliant only in therapy sessions and I was a complete haggard, strung-out mess.
- Makaton signing was the best thing we ever did.
- It takes two to talk - a program out of Canada - was the next best.
- The Nuffield System is STUPID, DUMB, antiquated, and doesn't work. AT ALL. EVER. At least it didn't for our child.
- create other avenues for your child to communicate - one of the new polaroid cameras worked a treat for him in documenting what he did during the day.
- compile books/reference dictionaries for preschool/daycare/school as to what some of their word approximations are and the signs that they use
- back-off on the sound repetitions and focus on the fun stuff - all the activitites that build up their mouth muscles and the like
- never give up hope
- but sometimes, it just really really sucks.

Today

Oscar jammed a small piece of lego up his nose. I'd show you, but in my anger and upset-ness, I threw it in the sink where it promptly went down the drain. Suck on that ocean outfall water treatment plant.

I tore shreds off him for it. I banned the Nintendo for a week. I sent him to his room. I told him to leave me alone. I yelled at him.

I reacted like this because I have been so deeply worried about his health - I live with an ever-present shadow of fear that something is going to take him from me faster and sooner than should ever happen - that I did not need the worry of him doing something stupid on top of that.

He has not left my side all afternoon, and often just come and sat beside me, just resting his head on my arm.

When was it decided and by whom, that love should hurt this much?

Eugh

Amalah recently brought me back to the world of Cancer, Baby. Today, Cancer, Baby's author, Jessica, died.
I don't know why her death has permeated my life as much as it has, perhaps it is indicative there is hope for all of us yet. That we still have the ability to be touched.
One of her very first posts talks about cancer becoming a watermark on her life.
I don't want to detract from the quiet moment many of us are taking on this horrible day that cancer took someone away, but it is such a good way of encapsulating how something you have no control over marks you.
Mongo chromosomes are a watermark too.

How I have felt the last little while about it all...

Our son, Oscar, has a partial duplication on the long arm of chromosome four. This rare genetic disorder has resulted in global developmental delays, in particular, a profound speech disability. He also has mild cerebral palsy. I hate starting with the medical stuff as it seems to me to reduce him to a list of ailments or disabilities, rather than encapsulating the person he is. And that, for us, in a nutshell, is the constant world of living with a rare genetic disorder.

You see Oscar is a happy, funny and highly empathetic boy who brings joy to the lives of all who know him. He absolutely loves playing handball, is a pretty good cricket bowler, doesn’t like soccer very much, is obsessed with swimming, or more accurately, being allowed to have a swim at his Nana and Grandpa’s house and is currently mad for anything to do with Star Wars. Anything. At all.

He is eight now. He has two brothers – Felix who is six and Jasper who is six months. For me, having had two more children, I now realise that the roller coaster of emotion and energy that is parenthood, is a hundredfold when you throw disability into the mix.

Beyond normal parental concerns is the role of advocate, of fighter, of defender – and often for an entire cohort of families pushed to the fringe of society through no other reason than having a child not sitting pretty in the middle of the bell curve of development. A dear friend – Diane Petrie - calls it living grief and she is quite right.

From the early years where our anxiety was so milestone focused – will he walk, talk, clap hands, sit etc. – to our current situation of just this year moving to a mainstream classroom setting (see our dream for Oscar) and the myriad emotions that pulls from us, I spend a lot of time mulling over what is this world I now inhabit, what is this role, this cloak I now where because of one stupid little dodgy chromosome.

We spend way too much time with doctors and specialists. We spend inordinate amounts of time on various forms of therapy. I have laid awake too many nights, and woken too often in the deep of the night, with an aching pit in my stomach and heart that feels it is about to shatter into a thousand pieces, wondering what the world will hold for my beautiful child as he grows and particularly when he is an adult. We have suffered extreme financial hardship as my capacity to return to work was curtailed and the medical expenses spiralled. We have spent too many days in ambulatory care at Sydney Children’s Hospital. Too many hours in doctors waiting rooms. Too many times giving the potted history of my child’s life to someone else, yet again.

Am I disgusted with our government – the body we elect to ensure none of us get left behind, that those of us without a voice have one – and the woeful level of services and support it offers these children and their families? More than words will ever express.

Am I tired at constantly having to fight for basic rights for my child that are automatically bestowed to children his age who do not have special needs? Of course.

Am I galled at how many people make decisions for him that are actually deeply discriminatory but done so with the best of intentions? Way too often.

And so it goes on. And on.

That lottery, the one that plucks us out from the millions of others, is really really shitty.

So how do we move on, how do we get up each and every day to do it over and over again?

I decided fairly early on in the piece that wallowing in a heap was not going to do much for Oscar. Be proactive, try anything once, ask lots of questions, be nice but in control, never give up – this has been my mantra, my doctrine. Find people you trust, find therapists you would invite to your house for dinner, be open and never lose your ability to laugh, even if it’s through floods of never ending tears, if someone offers support, take it. Find support agencies or people you connect with and never let them go.

For us, in the midst of adjusting to this life and its resident fog (that still settles over our lives with jarring regularity), we came into contact with two remarkable organisations – AGSA and Lifestart. I credit Diane Petrie, at AGSA, and her honesty and humour as getting me through the first five years of Oscar’s life. I simply do not know what I would have done without her words, advice and sometimes, simply a nod and a “it really sucks” to let me know I am not alone in this sometimes hellish world.

Lifestart is a parent co-operative that provides family-centred support programs to over 300 families of children with disabilities across Sydney turned our family from one based on stress and grief to one of empowerment, strength and optimism. We have spent much of the beginning of this year making DADHC see the value of this service (a value they see in that they fund exactly the same service in different parts of Sydney) and provide us with much needed funding. After an intensive campaign involving our local members of parliament, local media and Alan Jones on 2GB actively supporting our cause, we recently learned that not only has funding been allocated, but a tender for the provision of this remarkable support service across all of Sydney announced. A wondrous, albeit hard-fought, victory indeed.

So now Oscar is eight years old and this year has moved into a mainstream Year 2 setting. This is not something to gauge in terms of success or failure, but more a work in progress.

While I am deeply stressed about sending my boy into the wilds of a mainstream school setting, the quiet fortitude of knowing Oscar is having the opportunities and experiences afforded to other children his age, irrespective of his abilities; that he is learning from his classmates and his classmates from him; that there will be a generation of children who grow into adults knowing Oscar and therefore knowing that just because you can't talk or you don't quite learn in the same way, you have value and purpose in life; and that most importantly, you are not to be feared, taunted or spurned purely because you're different - is immeasurable.

I realise this may all sound a bit grim, a bit “it’s dark down here at the coalface”, but it is. Sure, we laugh, we have fun as a family, we do ‘stuff’, but the dodgy chromosome does it with us and that makes it different. Always.

Here we are

This blog is for me to bang on about OggaBoy. O has a dodgy chromosome. He has a partial duplication on Chromosome 4. His karotype reads (46, xy, part dup 4q25.1-35.1). He is now 8. I love him more than I ever thought I could ever love anyone.

That'll do for tonight.