Karen gave birth to her twins at 24 weeks and five days. Both Ben and Jordan have special needs. Karen has been their advocate every step of the way, navigating her way through disability services to ensure both children get the support and care they need to thrive.
This is Karen’s story:
Jordan and Ben were determined to come early and the doctors are unsure as to why. My waters broke at 24 weeks and 5 days and by the time I arrived at the hospital, I was fully dilated. The only option was to deliver the twins by Emergency C-section. At birth, they weighed a tiny 687grams (Jordan) and 701 grams (Ben) . They spent 179 days and 201 days in hospital. It was a roller coaster ride with having three operations between them and numerous complications along the way.
Looking back, it’s hard to believe now what we went through. We count our blessings that we have two inquisitive, active and engaged teenagers. We have come so far with them, but still continue to face challenges daily.
Our daughter, Jordan required a VP shunt inserted into her brain due to a grade 4 IVH (brain bleed) on one side and grade 3 IVH on the other. She required ongoing oxygen due to her premature lungs and was sent home with portable oxygen which supported her until she was almost one. Jordan lives with a disability as she has profound hearing loss and mild Cerebral Palsy.
Since coming home, Ben has been in hospital three times with bronchiolitis and two bowel obstructions that required surgery and both twins have delays in areas of their development such as fine motor and gross motor skills, which is to be expected considering their size and prematurity.
Being in the NICU/Special care for 201 days, I met some amazing mums who made you feel supported. We all bonded through our common experience, although no two journeys were the same yet they understood what you were going through. Many of these mums and families are my most treasured friends even today.
During that time we were given information and gift bundles from Lifes Little Treasures to help with the emotional support and connections that hospital could not give.
I remember when the twins were discharged from the hospital and the medical staff could not really give us clear idea of what their futures would be like, especially for Jordan. The hospital referred us to range of specialists to help monitor and assist their development. These resources were so important and give you the necessary contacts to best support your child. In our case, they were; Early Childhood Intervention, Physiotherapy, Occupational Therapy, Neurologist, Australian Hearing and Paediatric Rehabilitation.
I didn’t expect that at their three year review at the hospital, I would come home with the news that I had both twins with special needs. Jordan had been given a diagnosis of Autism and Ben what they called high–functioning Asperger’s. My heart sank how would I cope? The tears flowed as I felt I had failed them.
At that time, I was again given specialists to contact for medical support, Autism organisations, support groups and did lots of googling! I learned very quickly to ask a lot of questions and to accept help. I also reached out for in home support and assistance at the numerous appointments we needed to attend. As equally important, I had respite for me which was provided by a government program that now has evolved to NDIS.
For 13 years my role has been as a mother to two teenagers living with a disability. It has been a difficult, challenging and at times very hard, but just like any other parent, it’s also been very rewarding. You never know what is around the corner (like the challenges of COVID 19) but ask for help and support and listen to your gut feeling on what is right for your child.
There is lots of support out there when you know where to go – and certainly more now that when my twins are young. You just need to ask. Most importantly, know you are never alone.
I have been able to return to study and now have a Certificate IV in Disability and I have also been employed in supporting adults with a disability in a day program, assisted many families with Support Co-ordination in NDIS and also shared my experience informally. So although life can still be challenging, I feel more empowered now that I have learnt through experience and my studies, how best to support my kids – now and into the future.
The most important resources I found helpful for our situation:
- Friends and family
- Life’s Little Treasures Foundation (we do the Walk for Prems every year)
- Facebook groups
- ASPECT – autism
- Association for Children with a Disability
- NDIS website
- A Paediatrician and GP you feel comfortable with
- Monash Children’s hospital
- Source kids
- Alfred Carer Services
- Cochlear Implant Clinic
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