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Posted 11 September 2016 - 07:28 PM
How wonderful! Congrats to you and your little family.
Posted 11 September 2016 - 07:38 PM
The little baby i brought home when i was 20 just turned into a big 10 year old. Enjoy having a little one!
Posted 11 September 2016 - 07:38 PM
You sound like the loveliest person and such a beautiful mum. You deserve all that happiness-- you have made it all happen. Well done. You will inspire your daughter, and so will your partner. She is a lucky little girl to have two wonderful parents. Beautiful name, too!
Posted 11 September 2016 - 08:04 PM
What a wonderful thread to find with such a beautiful story celebrating the arrival of Olivia Eden AKA OllieBug Adorable! Congratulations to you & your family, OP.
Posted 12 September 2016 - 06:36 AM
Thanks for updating, OP. It's lovely to hear you're doing so well!
Posted 24 October 2016 - 04:56 PM
It's amazing how fast things change. Couple months later and OllieBug is 15 weeks old today. She's a funny, quirky little bug who loves to laugh and shout ! and God we love her so much. We're still doing okay financially, everything's paid eg rent, food, nappies and some weeks there's enough to go into savings and for my boyfriend and I too go out and just be us, together, without OllieBug.. Her grandma is so inlove with her and takes any opportunity to have her for the evening.
The love in our house is incredible. It's honestly something I never thought i would experience and I cannot believe how lucky we are. My boyfriends parents are flying over from England for olliebugs christening and it's going to be a wonderful day. We're all gearing up for her first Christmas and it's so exciting !
Posted 24 October 2016 - 05:17 PM
Oh wow, what a fantastic update! Congratulations again!
Posted 13 April 2019 - 11:08 PM
It’s been a while. I’d love to update you all but I’m afraid we’re reallt struggling. I read back and almost cringe and my innocence. I was really naive and young.
I’m still young, 24 this April.. feel about 20 years older.
Olliebug is nearly 3 now. We won’t have a party because she can’t stand the noise, the people in her space and her home. We will have a big Daniel Tiger cake because she LOVES Daniel tiger.
In January 2018 Olliebug was diagnosed with Level 3, severe Autism, at 18 months old.
But I knew long before that. I think I first noticed that she had stopped smiling. She was such a beautiful baby that I started building up our family albums and slowly over time I realised her smile had faded, her gaze had moved down. She stopped smiling at me when I called her name and stopped giggling when I tickled her. Eventually her engagement faded off completely and I just knew, I knew something was going horribly wrong.
Now we struggle. Olliebug is beautiful. Long, thick blonde curls. Big green eyes and sweet dimples. She’s a sensory seeker so she’s never still, she flaps and hums and flaps and screams and claps and twirls constantly. She is completely non verbal. Occasionally I hear a “MUM” and my heart stops and I turn around expecting her to be looking at my face. She never is.
Her understanding of what I’m saying to her is, minimal. I don’t know if she understands it when I say, I love you, or where is your teddy?”
I don’t know her favourite colour. She has trouble sleeping. She doesn’t want to be read too, she will throw the book. She isn’t potty trained and has no understanding of “potty”.
She’s so incredibly smart, I know it but she has no way to communicate it. My heart is broken. I love her so ****ing fiercely it scares me and I’d give my life for her, but God my heart is so broken some days I don’t know how I’ll keep doing this.
She will always need care. She will always been in some form of therapy. That we can barely afford. We’re scraping by now, it’s only going to get more expensive. She’s getting bigger, running away is an issue. She has no danger awareness. Water is a nightmare. She’s so obsessed I have visions of her drowning because one day I might not be quick enough or she’ll wrench her tiny hand out of my grasp.
I’m too scared to have anymore children and my partner, God bless him, he’s everything I could ever want and more, is wanting another. He thinks Olliebugs Autism was a fluke. A one off. Just unlucky. I feel like something was stolen from me, from her.
I will not survive another diagnosis. My heart can’t bear it.
I never thought it would be my baby.
Posted 13 April 2019 - 11:22 PM
I can't read and not respond. The strength and love for your child in your post is palpable. Olliebug is incredibly lucky to have such an amazing mum.
Posted 14 April 2019 - 12:27 AM
I can't read and not respond either. You sound like the most wonderful mum. The kids with special needs and disabilities section is quieter than it used to be, but you will find support and understanding there whenever you need it, I don't know what I would have done without the EBers there.
Two purely practical things. Have you been referred to the NDIS/ NDIA? All of my sons therapy is funded my the NDIS. That may help with the financial strain if you're not already in contact with them? Also, when my son was diagnosed as autistic we were offered genetic testing. I can't remember the details but it was something like a gene that determines that a carrier is autistic, genes that indicate a higher risk, or neither of those. We were offered it as a positive result could mean that myself, my partner or my dd might also have those genes. For you it might be useful in terms of your discussions about having another child.
I'll be thinking of you OP.
Posted 14 April 2019 - 06:31 AM
I remember you Bravelove. Olliebug is lucky to have you. As Pocket said posting in the special needs and disabilities section might provide some practical help in accessing services like the ndis and some support. There's some truly lovely strong women there.
Im sorry you're struggling. Thinking of you xxx
Posted 14 April 2019 - 09:08 AM
No advice to offer, just thinking of you. Life sounds so hard for you at the moment, but I think Ollie is very lucky to have you as her mum.
Posted 14 April 2019 - 11:03 AM
Big hugs Bravelove, I remember you and I posted in this thread originally xo
Firstly, you are doing a super job. Having a child with ASD comes with its own set of issues (my DS has ASD.) The thought load can be exhausting, there can be grief in dealing with what you expected parenting to look like and how it actually is and our kids need a bit of extra care.
So some practical advice.
Get onto the NDIS if you haven't already, as it can cover the cost of therapies.
Sleeping issues can be common with ASD, so ask your dev paed about melatonin. DS has been on melatonin for sleeping issues since the age of four.
Re being a runner/bolter, I always used a Mr Monkey backpack with DS if we were walking down the street or around water and I didn't care what anybody thought, as it saved his life several times.
Honestly, ASD is one major reason why we haven't had any more kids. I personally feel that I have only a certain amount of energy to give, particularly when my child requires extra care and therapies. Having one child is a perfectly valid choice, even if it isn't an "easy" choice sometimes.
In my experience, things do get easier and I am much more comfortable about DS' diagnosis nowadays but yeah, it still hurts and sometimes I just don't want to deal with it. Grief comes in waves every now and then.
That said, our children with ASD can be so amazing and have so much to offer. They will find their own groove, some things may just take a little bit longer.
Make time for yourself when you can: having a child with ASD is a marathon, not a sprint, I feel and parents carry so much thought load, particularly regarding school and therapies. Be gentle with yourself and pat yourself on the back regularly.
Hope some of this helps, I have been there and I'm still there, so I get it.
Posted 14 April 2019 - 01:26 PM
I couldn’t help but post either.
You and your partner sound like the most incredible, thoughtful and loving parents. Your daughter is so lucky to have you.
You have been through a tough journey.
My son was diagnosed with ASD and I never thought it would be me either.
We had another son- before his diagnosis. We aren’t sure if he has ASD yet; he seems different to his brother. But if we are realistic the chances of his being neuro- diverse are high. I recently said myself that I wasn’t sure if I could handle a diagnosis. I agree with having some genetic counselling.
Keep talking on here.
Your daughter is lucky to have you x
Edited by blueskies12, 14 April 2019 - 01:27 PM.
Posted 14 April 2019 - 03:09 PM
On the one hand I'm so happy to hear how well your relationship has evolved. You've both been put under such enormous pressure on a number of fronts, to come through it even stronger says much about you both.
I'm sorry though that your parenting experience is not going to be the plain sailing it is for many, looking forward to all the milestones. You will make it your own journey though, and hopefully funding will make it easier to manage.
Posted 14 April 2019 - 03:21 PM
with a diagnosis come ndis funding!!!
pain in the bum to apply for, but worth it in the long run
ot, speech, psych and respite if needed!!!
also - can you look at a psych or counsellor for you????
just someone to talk to??
Posted 14 April 2019 - 06:47 PM
Bravelove: I didn't read your thread when you first posted. Your update is both heartbreaking and wonderful. Wonderful that you and DP are still together and that you love your little girl, but heartbreaking that parenting hasn't been easy for you and will always involve greater challenges than for most. Olliebug sounds like a very special little girl. I too have a DD with ASD. However she is verbal, level 2, and sticks to us like glue rather than running, so nothing like the challenges like you're facing in your parenting.
I've come across a FB page called Finding Cooper's Voice, and it's about a boy who is non-verbal, has severe ASD, will run/escape, and is very much loved by his family. The mum, Kate, runs the page. She's amazing. She's so positive but honest. Slowly they're helping Cooper to learn to communicate using an iPad. It might be of interest to you, and you might be able to connect with others in situations like yours.
Posted 14 April 2019 - 07:35 PM
I just stumbled across this and couldn't not respond. I'm really sorry for the difficulty. I have 3 kids and one more on the way. I started young ish and we were both still at uni it was really hard. My eldest is ADHD and it can be really tough. We've just found out the youngest is ASD, but only level 2. We now know it's unlikely we will have kids who don't have something.
I'm not trying to give advice or anything just sharing. I've spoken to a lot of people with ASD kids along the way. The ones I know whose kids were level 3, actually found as they got older and some were able to communicate things did get a lot better.
And having more kids... maybe I'm still young dumb and naiave but I guess for me my ASD boy is so special because he's ASD. In my family the ADHD is at the moment far more difficult to deal with. I'm just glad I had the kids I wanted anyway, because otherwise I wouldn't have my youngest beautiful sweet ASD boy.
I really really hope for you with all that early intervention, and now NDIS access, that they might be able to help your girl shine. She's still that sweet little baby. I'm trying so hard to remember my sweet little baby girl before her adhd made life so damn hard. I'm trying to hold on to that girl because all those beautiful things are still who she is, she just often doesn't show it.
I'm really sorry if I'm rambling and totally unhelpful. I wish I could sit over a coffee with you and give you a hug.
Posted 23 April 2019 - 10:23 PM
I couldn't read and run either. Im sorry to read your final update. I firmly believe that these special children are born to special mothers.. really strong super mums and I believe you can do it. Remember that her heart loves you even if she cannot express it.
There are lots of ways you can find support financially. Lots of resources online too. I can't really help much with more but this forum is a great place to start .
Its great that you have support from your partner. It sounds like despite the challenges you will make your family work.
Posted 23 April 2019 - 11:08 PM
I remember you too brave love, and here you are back again as brave as ever.
I don’t know about you, but this parenting thing is nothing like I imagined! We don’t have autism, but ADHD and a heap of other health issues. Some days can be so overwhelming, and then other days things are ok.
You are still young, so no need to make any final decisions about whether to have more kids or not, just know for now you aware not ready and go with that.
It really sounds like you grieving for the loss of what you thought you thought your girl would be like, and that is okay. Take as long as you need and know it is okay and normal to feel such strong emotions. You sound like such a good mum.
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