May
04

the story so far

Where do I start? I’ve typed it out and then deleted it because I don’t know what to say about the situation – but I figure, there’s other parents out there going through the same thing and there’s no benefit in keeping it to myself. I have a blog, I have an experience to share, so let’s get it out there.

My beautiful daughter Jovie is turning 2 in a few weeks and she doesn’t speak a word yet. She doesn’t feed herself, and she doesn’t like to play with toys. My daughter hasn’t called me ‘mama’ and can’t throw a ball. She doesn’t understand where her belly is and doesn’t play and mimick like other kids. She plays with her fingers, will rock back and forth sometimes and grinds her teeth. She doesn’t look people in the eye all the time, and doesn’t play with others.

About a year ago, she was on her way to reaching her milestones, but then stopped after her 1st birthday and hasn’t really progressed since.

Jovie has always been special to me, to all of us, but now we’re on the path to (hopefully) find a medical term for whatever she’s going through right now. We’ve had 2 appointments today – the child health nurse and a speech pathologist. The next step is an assessment at the children’s hospital with a developmental paedetrician and team of professionals, but the initial thoughts is that yes she is about a year behind in gross motor, fine motor and speech skills. And unofficially, shows signs of autism.

How do I feel about everything right now? Well, I’m in two minds – one, I don’t want to over react and pressure Jo into doing all these things if she’s not ready. I don’t want to be ‘that mum’ who pushes and pushes. But secondly, I don’t want this to get any worse for her. I don’t want her to not get the support she needs or learn the communication skills we all need. I want her to have the best of life, and even at 2 years of age, I want her to have the best education possible.

The road ahead is daunting, there’s most likely going to be regular therapy sessions at least over the next year which means changes to my work schedule, but I would do anything for her and her brother. The scariest thing is not knowing what to do for her yet – but I guess that’s what parenting is all about – learning and adapting to whatever your children need. I think we forget that as parents, we’re also teachers and sometimes the path is just a little steeper than others.

So that’s where we are today – at the start of all the appointments and assessments. It’s part of the reason why I haven’t launched a full online store – I didn’t want to commit myself to a project that would take away time and money from Jovie. My family comes first – it doesn’t mean I sacrifice it forever and it’s no ‘excuse’, but just for now it’s going to be a smaller venture than I dreamed.

If you’ve had experience with these kinds of things – global development delay, autism or if anything sounds familiar – I’d really appreciate if you could share your story and where you’re up to. I had a hard time finding any blogs from parents specifically talking about these things – so if I can open up some discussion over the coming months, I think that would not only help me talk about it more, but others too.. xx

my Jovie

My daughter Jovie will turn 2 in a few weeks. She loves to laugh with her Daddy, and loves to play peekaboo with Grandpa. She loves to watch her big brother Jasper, and adores flipping through books. She loves to look at photographs and has a fantastic appetite. She loves watching animals and has an amazing smile. My Jovie knows she is loved and will always know who to go to for a cuddle. Her mama :)


pickyin • May 4th, 2011 at 10:52 pm

Hi Tracey, I’ve been following your blog and shutterbug for the longest time but rarely comment. I have a friend who’s in the exact situation as yours but she doesn’t keep a public profile. Her son is 2-ish this year and in Singapore she has sent him to speech therapy classes. If you like you can drop me an email for me to forward to her so that you two and communicate.

Meanwhile, take care and happy birthday to Jovie in advance!

-pickyin-

heleni • May 5th, 2011 at 4:34 pm

Thinking of you Tracey :)
You have a beautiful little girl and you wrote what’s most important – ‘ Jovie knows she is loved’.
Hopefully you will get some answers soon

yima • May 5th, 2011 at 9:06 pm

Hi Tracey, you are very brave, it takes great courage to speak about these things so publicly, especially when they are so very close to the heart. Your story brings back painful memories of my own journey and I would be more than happy to share my story with you, and to pass on any information about the myriad of services available in Sydney. I am very thankful that I live in this country. My son is 4 years old and has global developmental delay. He was 3 when he finally uttered his first word “mama”. He speaks only 4 words, however he uses over 50 signs. He still has alot of trouble with his balance when walking and has a tendency to play “unconstructively” with his toys. He goes to preschool, a special playgroup run by an early intervention service and sees an occupational and speech therapist regularly. He is my only child, and I view him as my precious gift as he has taught me soo much about myself and the world. I have to admit I am not very techno-savy, I had a lot of trouble just working out how to submit a comment. So please feel free to email me if you want to chat about things further. I could write a whole lot more but I don’t want to clog up your comments box. Thank you for sharing, I have been reading your blog for the past 3 years, I actually used it as a bit of an escape from the heartache and sorrow that came in waves when my son was younger. Take each day as it comes. Love Audrey

mia • May 5th, 2011 at 10:02 pm

we have two little boys with development issues and i can tell you that the online community is invaluable for getting information. don’t give up, there really are a lot of blogs out there. i can recommend http://www.amommystory.com/. there are several autism blogs out there, but this is the only one i know of which discusses an autistic daughter. take care.

Tracey • May 5th, 2011 at 10:08 pm

Pickyin, Heleni, Mia. Thank you so much for taking the time to leave a message here for me :) i’m still a little foggy with so many questions and stories and info coming at me — but Jovie is still my Jovie no matter what.

Audrey, I WILL be in touch with you soon.

shedigszombies • May 6th, 2011 at 12:34 am

I have read your blog for a while now an follow you on twitter as well. I know how heart breaking and heart wrenching this whole process can be! My son was diagnosed as being on the autism spectrum as well as having ADHD. As was mentioned above, finding a “community,” online or not can be invaluable! I am not sure how many questions I could answer for you as our situations though similar are different, feel free to send me an email any time! Jovie is a beautiful little girl and I know that no matter what, you two as her parents, will always do what is in her best interest!

ballet flats • May 6th, 2011 at 2:37 pm

Hi Tracey,

Long long long time reader, before even Jasper was around…

I think you’re very brave and such a wonderful mum for talking about something that sometimes people are scared to even admit to themselves…

I don’t have any help to offer you, but i’m here reading and listening…

happy birthday Jovie!

bf x

Tracey • May 6th, 2011 at 4:27 pm

Thanks lovelies xxx

For the mums with experience with this – can I be so forward to ask whether you think Jovie is autistic?

Of course I’ll see the professionals but I also think mums are professionals when it comes to their kids :)

yima • May 6th, 2011 at 9:23 pm

Dear Tracey, it is not forward at all to ask that question. When we were seeing all the professionals, I asked that very question about my son, as he was two, did not point, did not say anything, didn’t seem to understand when people waved hello or bye and lined up his toys regularly. I was convinced he was autistic but all the professionals told me he was not “socially impaired”, hence not autistic. So I guess what I am trying to say is, it is not straightforward. take care – Audrey

brebolivar • May 6th, 2011 at 10:48 pm

Oh Tracey!
I’ve been thinking of you often since I read your post. I think Jovie has a lot of great things going for her, including her two perfect parents. I also wanted to mention Rett Syndrome….some of the symptoms you were talking about with Jovie made me think of it. It is more common in girls and often confused with autism because the presentation can be similar. The autism spectrum is just that – a spectrum! So it’s always a tough “diagnosis.”

She is such a precious girl! I love seeing her in photos from across the world :) Miss you and Regan!

melissa • May 8th, 2011 at 1:08 am

Tracey, I just left a comment on your photo on flickr and followed your link here. I don’t really know what to say, but I had to post. Have you been on ido lately ? There is a thread going about autism and early intervention etc which might be helpful?

As the others have said – it’s not a straightforward diagnosis. Best of luck in the journey, I hope it goes as well at it can.

Give Jovie a big cuddle and tomorrow (no wait, today!) have a lovely mothers day. xx Melissa

Tracey • May 9th, 2011 at 9:55 am

Audrey, thank you again xxx

Bre, I did look into that briefly – but I have to stop as it’s kinda freaking me out. We have a screening appt in 4 weeks so I’ll ask the questions and go from there xx

Melissa, I kinda of don’t want to get into a community yet – I sort of want a diagnosis first before I join in a community again.

–

We had a great Mothers day yesterday – Jovie, as always, was soo happy all day and it was so great! Such a charmer at the dr’s office too

Fiona • May 16th, 2011 at 9:06 pm

Hey, as I said before in the other post, I don’t have my own story, just those of others I’m happy t be an ear if you want to bounce things off xx

rappy • May 22nd, 2011 at 3:16 am

Tracey,

I’m writing this to you on the basis of secondhand knowledge from a very good friend. I’d met this friend about five years ago, when her daughter had just turned two. At that time she had just been diagnosed as autistic, to my understanding on the basis of circumstances similar to what you describe, i.e., not saying “mama”, not making contact with those around her, and just generally being miles behind kids her own age developmentally.

The first time I met her daughter was in a room full of people, including children, and she just played by herself and didn’t engage at all with anyone else. Very shortly thereafter the entire family spent a couple of weeks at a place called “Mifne” (in Israel, http://www.mifne-autism.com/). During this time not only did their daughter have intensive one-on-one sessions with speech therapists and other professionals, but the parents also hand intensive training on the types of activities they should undertake, how to engage the child, therapy sessions, etc.

It was an incredibly challenging experience and it was followed immediately by further work with speech therapists and other professionals at home. The changes in their daughter were absolutely astonishing and within a few months they had a child that could be engaged and was conversant. They kept her in a special needs kindergarten for another two years, but at the age of four they transferred her to a regular kindergarten (with a full time carer whose job it was to ensure she was interacting with the other children – to this day the daughter is unaware that the carer was there specifically for her).

Today the daughter is seven years old and about to finish the first grade. She is a chatty, gregarious girl and it’s sometimes difficult to get her to shut up :) . An outsider wouldn’t be able to notice any kind of problem, though someone in the know might recognize certain things out of the ordinary. They continue to work with her regularly (though they no longer rely on external professional help), as autistic kids – even highly functional ones – lack the ability to identify nuance and read situations well so they have to be taught things that we can all do instinctively, like understanding sarcasm, for example.

I’m not saying that this is a magic one-size-fits-all solution, and it could be that this is an entirely different diagnosis, but if it is autism, I’m led to understand that the best hope is a very early intervention and Jovie is at the right age for that. It’s entirely possible that there isn’t a similar program where you live, but perhaps if you contact Mifne they’ll be able to direct you to appropriate resources.

I hope this helps and wish you well no matter the diagnosis. If you’d like me to get further detail for you, email me.

Regards,

Carmit

nerdykins • August 16th, 2011 at 10:28 am

Hey Tracey,

My sister has autism. There’s about 9 years between us, so when she was born, I had to grow up pretty quickly.

But I remember mum and dad and the doctors not knowing what was wrong. She just wasn’t developing quickly, not talking, walking or doing things on her own.

It took many many manyyy specialist appointments before someone diagnosed her with ‘autism’.

She had to learn to sign, and eventually started walking. We had a special development person come once a week to work with her, and it took all of us to pull together and read to her, teach her signs, ect ect.

She’s 20 now, and she’s had a few ups and down. She went to a special school, and that was the best thing for her. They had cooking classes, speech therapy, sport and socializing once a week with a ‘normal’ school. She is adored by all. :)

My sister had a brain hemorrhage in the womb and wasn’t supposed to survive. She wasn’t supposed to talk or walk, but now she runs, she dances. She talks more and more every time I see her, but she still signs for certain things on occasion. She’ll never be able to live on her own as she can’t cook or care for herself entirely.

She amuses her self with computer games, dvds, ect. She’s very veryyyyyyyy smart.

Not really sure where I’m going with this, except being the other sibling, having to grow up quickly and to this day still have to be there when my folks are working, but it all works out and I know my mum wouldn’t change it for the world. My mum is a firm believer that god gave her this child for a particular reason.

There’s lots of assistance out there these days and hopefully you find the answers you’re looking for.

xxx

Tracey • August 17th, 2011 at 6:44 pm

Thank you so much for your story, nerdykins

I’m very grateful to hear anyone’s stories – sibling included!

I love that your sister has so much support :)

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