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