Post 32: First post of 2025. Decade milestone: 10 years
- Sarah Louise Clarke
- Mar 27
- 5 min read
Written 25th March 2025 by Sarah Louise Clarke
Kind of fitting to be writing post 32 in the year I turn 32!
10 years ago my daughter was born! A decade ago, a week after my birthday, I was having my first baby at age 23.
I was told that it is commonly known that older women and men past their 40's have miscarriages or children with disabilities. Less common for young people to experience this. "The older you are, the higher the chance of having children with disabilities," they say!
Well, I was 21 when I had my first miscarriage and 23 when my daughter was born with disabilities. Hubby was 34. So yeah, maybe it's stereotypical, maybe it's statistically, but whatever, I was young and I had given birth to a special needs child. I didn't know this at the time. But you don't have to be at the end of child bearing age to have a child with disabilities! Yes the chances are higher, but maybe if you don't have autistic genes in the family, your chances are lower.
The first signs that I knew something was wrong was when my contractions won't producing progress, my girl was born floppy, unresponsive and full of fluid. Her umbilical cord was thin and missing an umbilical artery.
There should be two arteries and one vein. My daughter only had one of each. We didn't know this at the time of birth. An hour later, I was holding my breathing baby and I instinctively knew something wasn't right. The next sign was that she couldn't latch on to breast feed and she was on formula until age one when we started to have the first signs of feacal loading. My daughter wouldn't sleep for more than a few hours at a time and my mum noticed the first signs of autism at 12 months.
As stated in the early posts, my daughter was diagnosed at 17 months old with autism spectrum disorder which I didn't believe until confronted at the Paediatrian's appointment in September 2016.
My girl was diagnosed with sensory processing disorder in January 2019, and intellectual disability in July 2019. She went on a waiting list for an SSP: school for specific purposes.
Chrissy is now in year 5 in 2025 but learning at a kindergarten level. Still at the same special school since she started in kindergarten 2020.
The department of education and physiologist assess their students every 2 years. And on top of the Level 4 Autism spectrum disorder, Chrissy is diagnosed with severe intellectual developmental disorder. She is classified as being totally dependent, requiring lifelong one to one support to carry out all independent and personal living tasks!
And as a mum and carer, I will be able to support her until she is an adult and there are services out there for disabled adults! It's a huge concept to wrap my head around, that my daughter has severe disabilities that require lifelong one to one support!
We are at the 10 year mark, my daughter is 10 years of age on the 25th of March 2025, even though intellectually she's still in preschool age mentality. She will grow and develop at a small and individual pace, but not like neuroptypical child.
Looking over the past 8 years, my daughter has been diagnosed with 8 disabilities:
Level 3 Autism spectrum disorder
Severe intellectual developmental disorder
Sensory processing disorder
Global developmental delay
Language delay
Rumination syndrome (regurgitation)
Generalised anxiety
Asthma
It's huge to wrap my head around the fact that my daughter has multiple disabilities even though she appears normal on the outside! 8 disabilities, it's astounding!
We celebrated my daughter's 10th birthday and she could barely tolerate balloons, banners, and lots of noise. Instead of throwing a big milestone birthday with the whole family, we had a quiet evening with my parents and hubby, with a small birthday cake, which I'm so pleased Chrissy tolerated. (Photo above).
The devastation is there that we can't celebrate her birthday the way neuroptypical children do! I thought I had moved past the grief stage, but it came back in the face of reality, that my child cannot cope and is overwhelmed by the concept of birthday's. We love the song because it is repetitive, but our celebrating is scaled right back.
Looking back at the day she was born, it was full of fetal distress, traumatic labour and birth over the course of 14 and a half hours, and the days and weeks after she was born and realising that my baby was different.
In saying all of the above, I would also like to commend my special needs daughter for her bravery over the last 10 years, living in a world she does not understand, that cannot adapt to her, and she can't adapt to it. As parents we do our best to make life work around them, but the day to day challenges of living with disability, is a huge experience to survive through!
She is living in a body that has multiple disabilities and she has to somehow find a way to cope through everything she faces. Sometimes she can't and we will have horrendous meltdowns and anxiety attacks and we can't transition environments. And it gets harder the bigger and older she gets.
In 2024, Chrissy had 3 hospitalisations with faecal impaction, urinary retention and dehydration. It happened every time she was teething. I've mentioned it in other posts, the traumatic experiences with cannulas, nasal gastric tubes, the sedation, the impaction. And as parents we find it distressing and traumatic. This year's we've been able to stay out of hospital thanks to regular Osmolax relief and Dulcolax drops.
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I have survived the the first 10 years of parenting and Chrissy has survived the first 10 years of life living with disability. I commend us both for passing this decade milestone! It was unexpected but I've learnt so much. It's been a journey and we have a long way to go but we persevere in God's strength! He made Chrissy exactly as she is and while we may never gets answers for why God allows disability in our lives, he promises to be with us every step of the way! He has lead us through our journey and given us amazing people to help us through! Therapists, support coordinators, in home support services, great medical teams and more.
That will be for a later post!
Parenting disability is my ministry, my calling and God's plan for my life! He's given me a heart for all things disability and the desire to understand my daughter more! I'm not an expert but I love her fiercely!
Commending and celebrating the year of turning double digits on our Clarke version of party mode!
Until my next post,
Sarah Louise Clarke
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