Hey Everyone,
I’m new to Steemit my name is Kiana and I am 32 yrs. old from Brisbane, I have 3 beautiful children a beautiful daughter Mia (14yrs old) and 2 very special little boys Levi & Jacob. My boys are special needs boys Levi is 7 yrs. old and has a diagnosis of ASD (Autism Spectrum Disorder) he is low functioning which means he is very reliant on me for everything, he also has gut issues one of which is Leaky Gut Syndrome and I believe he has ulcerative Colitis, He is non-verbal but does make noises though and in nappies, he is also very restricted with his diet he only eats kfc (nuggets & chips) frozen coke or chips out of a packet.
Levi was a typical baby he had started talking and was very cheeky and happy and social until his first birthday then he slowly started to lose his speech his happy bubbly little personality and began to withdraw, lose all eye contact looked extremely sad all the time, Autism had robbed my baby boy and trapped him in his own little body it was a real struggle to watch as this bloody thing took my baby boy away from, it stole his light and locked him in his own body and took his speech.
Levi is now 7 and attends a special school which is something I never thought would be beneficial for him and it has been so great he is really thriving and at times I get a glimpse of the little boy I once knew. He is an absolute champion! While all of this was going on I met my now ex-douchebag pardon sorry dam autocorrect meant ex-husband and fell pregnant with my Jakey,
Jakey who is 5 yrs old is medically complex and complicated, Jakey has had roughly 17 surgeries to date, he has a rare medical condition called Pierre Robin Syndrome which he is lucky because most babies who suffer from this also have cleft palate which he had until repaired but also cleft lip which he did not.
Jacob also has a deletion of his 10q11 chromosome which I am trying to research and find how it affects Jake today, Jacob also suffers a range of medical issues to name a few he has cyclic vomiting syndrome which causes episodes of vomiting can last days or weeks or hours, he is gastrostomy peg fed fluid as he struggles with low muscle tone in the jaw and cant coordinate his tongue properly, He has Myoclonic seizures which until a year ago only happened at night but now while he is awake, he is developmentally delayed, has ADHD, ODD, behavioural issues and currently being tested for high functioning ASD (Asperger’s), SPD (sensory processing disorder), APD (Auditory processing disorder) he has a speech and communication impairment, meltdowns which he can become aggressive, self-harm and lash out.
My beautiful baby boy has had a very tough life the minute he was born he couldn’t breathe or feed on his own straight to special care was extremely emotional and for months I wasn’t able to stay with my baby I had to leave him at the hospital and go home was probably one of the toughest things I have had to do in my life.
As Jake grew more and more diagnosis were given and Jake just kept getting thrown whatever life saw fit for him, he has suffered most of his life and with every hospital trip which is regular or therapist, or illness my son has just taken it on the chin like a complete warrior! Always had a smile on his cheeky little face, as he has grown so have the issues, I have fought very hard for both of my little warrior boys and I refuse to give up or back down! So much has happened in the last 7 yrs.
I would be here forever telling my babies story, Jake has had 2 stories published in the local paper (can google it) and a page published in the QT. The struggle will always be to a degree for my boys but they are both so determined, strong, happy, and completely loveable boys they have taught me a lot about love and not giving up. As I sit here looking for schools for my Jacey I look back over the years and can’t believe how far they have both come. I have almost lost jakey numerous times as a baby and recently in surgery and Levi I almost lost him too as he nearly drowned at a water park (he is water obsessed) quite common for kids on the spectrum and he let go of my hand and in a second he was gone and drowning.
My daughter is talented amazing and life isn’t so easy for her either but she is just as strong as her brothers I am very proud of the children I am blessed with so I didn’t think I was quite busy enough and decided to start my own T-shirt printing business lol and am really looking forward to returning to work. I think I’d like to help people like myself and families as some will know having special needs kids can be extremely isolating and lonely. Can’t wait to start sharing some of our experiences good and bad on here.
Thanks
Welcome to Steemit mate, I think you'll do well here :)
I resteemed your post and enrolled you for @centerlink benefits - good luck!
We could all do with a few benefits. :-)
I agree. Thank you @ausbitbank
Thanks so much
Welcome to Steemit @kikibosslady!
Weelcome to steemit :D
Thankyou
Welcome to steemit @kikibosslady. I'm looking forward of reading your articles. Good Luck!!
Hi Kiki, please let me know what you think of the following (hope you can understand some of it), please, this is not a recommendation, but a basis for discussion, just would like your views.
Thankyou, very interesting watch!
Try with papaya pip smoothies, I have good reliable experience with that. A friend of my daughter was ill for years and in medical treatment and nobody could find anything. When I identified it the girl had intestinal parasites to the brim!
Welcome to Steemit @kikibosslady. Glad to have you on #teamaustralia. I was born in Australia and live in the U.S. now, but I spent 30 years of my life on the Gold Coast and some of that in Brisbane. I hope you are able to grow and prosper in the Steemit and Steem community.
thankyou so much
Welcome to Steem @kikibosslady I have upvoted and sent you a tip
Welcome to steemit Kiana,
looking forward to see epic posts from you.
Welcome to the Steemit.com community! I’m also new here.
Followed and upvoted. Please consider following me and checking out my past posts:
https://steemit.com/introducemyself/@rebele93/another-minnow-learning-to-swim-in-a-very-big-pond
https://steemit.com/photography/@rebele93/2017-total-solar-eclipse-images
https://steemit.com/photography/@rebele93/tonight-s-moon-9-5-2017
Cheers,
Mike Bryant (AKA: Rebele93)
https://steemit.com/@rebele93
Hi welcome to steemit. I too have a son with special needs my son has Tetrasomy 18p there is around 250 cases in the world. Also had to deal with the feeding tube which sucks ass. Mine still don't talk age 9 but he under stands what you say.
Wellcome, looking forward to your posts :D
Welcome to Steemit!
Welcome to Steemit. You'll do great here.
Lets Support Each Other
Follow Me @manofmiracles i/ll be sure to do the same
Thanks!
Bienvenida
Hello and Welcome! Nice to meet you! Thanks for join
Welcome to Steemit @kikibosslady. I wish you every success!
thankyou
Welcome to Steemit!
This post has received a 0.78 % upvote from @drotto thanks to: @banjo.
Thankyou so much
welcome! Glad to see you here. Hope you dont get as addicted as I am to steemit! ;-)
Welcome to steemit Kiana.
Thankyou
Welcome to steemit @kikibosslady, Nice to meet a great mother like you here.
I am happy with the way you take care of your children. May happiness always be with you.
Greetings to your two great masters.
Thankyou @djunmul , i appreciate that
Welcome to steemit and greetings
Welcome to another fellow Aussie! Sorry to hear about your sons, so sad :( but you are very strong and I bet a wonderful mother to all your kids. Keep strong and keep working hard. Look forward to hearing more from you!
Thankyou so much @thegoliath i do love my children very much and i have so many stories to share, thankyou again for the support
You're welcome and look forward to hearing more!
welcome to steemit youre a great mom
thankyou i really appreciate that
Ahh beautiful Brisbane I lived there for 30 years....You Kiana and your little family are champions all
wow, thankyou so much i am really overwhelmed but so grateful for the support
Beautiful children! Welcome to steemit @kikobosslady :)
thankyou! i think so to lol
Welcome Kiana, you have a beautiful soul and heart. I love pictures of your children. Wishing you the best in our Steemit community and in life.
Thankyou very much, i really appreciate all the support means so much.
Welcome and thank you for being with us !!! Following your Blog now
Hi @kikibosslady welcome to steemit, am sure that you will be a big success here. Feel free to see my posts on how to be successful on steemit and follow me for more tips . Steemit is a platform that rewards hard work, authenticity and great contents. Wish you success.
Hi @kikibosslady. Welcome!
We have a pretty strong Team Australia community going here on steemit to support each other. If you'd like to be part of it, then please check out this link for the instructions on how to join: https://steemit.com/teamaustralia/@choogirl/team-australia-new-recruits-update-03-09-17-plus-team-australia-milestone-200-members
Thankyou
Hello!! Welcome to Steemit :)
Wow... What a story... a very warm welcome on Steemit! Keep sharing with us;-)
Thankyou :)
Hi Welcome to steemit! I upvoted and im following you! Keep it up!
Welcome Kiana. You have beautiful babies. Thanks for sharing with us. I look forward to read more of your stories. Here are some places that you might find helpful in your research
https://genematcher.org/ connect with researchers
http://omim.org/ this site catalogues all disease genes
wow, thankyou so so much i really appreciate the links, means so much have never had so much support in my life. Cannot wait to see where this amazing Steemit community has to offer
@Welcome to Steemit @kikibosslady!
Wow super mama! Welcome!
love that quote! thankyou :0
Hello @kikibosslady :)
Hello, welcome to Steemit. I do hope that you have a wonderful time on this platform. Looking forward to your future posts!
Thanks for joining this beautiful community. I followed you. Wish you much luck! Have a great time.!
Hello @kikibosslady! Welcome to steemit! I'm zy from the Philippines. I have a lot of friends in Australia, I hope I can visit there soon.
Followed ya! Hoping for a good active support from each other. :)
@zyrawr ♥
G'day and Welcome! Good to see another Aussie join up.
Great Kids and lucky for them to have a Mum like you. Well done!
Welcome to the community of Steemit
I hope you enjoy it as much as I do, post very interesting post if you are interested and we follow to read us :D
Welcome to Steemit! I’ll follow you, please follow me as well, Upvote and Resteem so we can grow together. Thank you
Hallo and Welcome to steemit, hope you can share something with steemit. do not forget follow me and upvoted me, lets help each other :)
fellow Brisbanite here :) welcome :) you are a very inspirational mum.
thankyou very much, and always a pleasure to meet other people from brisbane on here its amazing
Welcome, good luck.
that you can have an excellent stay with the steemit family, we follow?
Congratulations @kikibosslady!
Your post was mentioned in the hit parade in the following category:
thankyou, wow!
What a great introduction, you're obviously an amazing Mum.
Welcome to Steemit and the best of luck to ya 😉