Hear from Nicole
What condition does your child have?
Our little girl is 23 months now, she has Russell-Silver syndrome. It’s a genetic condition that happens one in every 100,000. Russell-Silver syndrome has deformities, so it can be internal. She has Clinodactyly fingers which are turned in. She has a large head, pixie like ears, a small triangular face.
She has Dwarfism and she’s very, very cute, Primordial Dwarfism. She is short by half a centimetre to one centimetre with her arm and leg on one side. She has Scoliosis at the top of the bottom there, at the top part, so the lower back. She’s got poor feeding issues. The list goes on. There’s over 25 things plus.
What challenges do you and your family face on a daily basis?
Okay, it’s very time consuming. One is the communication with Sophey. So Sophey being so tiny and looking up at us, we all have to get down to her level to really try to understand what she’s trying to say verbally to us.
She has actually learnt sign language. My husband is hearing impaired so she has learnt nearly 20 signs to communicate. So she has friends who have Cerebral Palsy who are non-verbal and they use signs. So we’ve figured we can use that from home and to communicate as well. So if she could not get her message across while we’re at home at her level and trying to understand what she’s saying, she could actually say bath, more, finished.
What were you looking for in a service provider?
We were looking for a service to meet our needs. The needs of the child, so Sophey’s gastro needs, so the day to day tubing needs that were required, it’s very hard to try and find places out there who would actually tube feed. She has high needs with Hyperglycemia, so I was worried about baby sitting.
It was a family decision, my husband and I. And then I think it was having faith in those that knew what they were doing. And the training and the experiences is what we we’re looking for in a service, yeah.
What services do you use from Disability Macarthur?
I had a meeting at the hospital with a dietitian. And I walked into here one day and I was in need of some help. And it was to do with Respite. Needing a break, sometime out, making some time for myself, time for the family and she’s suggested Sunflower Cottage.
So I rang Sunflower Cottage in Mount Annan. And they took Sophey straight away. I was very apprehensive at first, and as you are for the first few visits. But on the first visit it was very family like.
Sunflower Cottage probably nearly a year now, we use Breakaway as well, which is probably the last 3 months, which is a little play group for a school environment. She’s enjoying that attention and the staff. I feel now that she’s safe, the staff meeting her needs there.
My husband will be attending in some of the Father’s Group once a month, which is really nice and he’s got a friend going with him as well, one of our uncle. So he’ll be going as well to support, Uncle Greg. So that’d be nice to go together.
Yes, it’s just amazing. It’s just amazing service, very family like.
How has Disability Macarthur impacted your family?
Huge impact. Again having time out for myself, my husband, the children as well. We’re looking at doing things together as a family but knowing that Sophey is safe in an environment, and also the fact that Sophey having timeout as well. She needs time away from the family as well. So sometimes we tend to forget about the child with the need.
Would you recommend Disability Macarthur to other families?
Definitely, again family approach. I’ve also being going to Max Family as well. It’s the Max Family program that has actually helped me to set goals and aspirations to where I want to go with my life because after 14 years of having things at home, running businesses. I’m working from home while having children from home. It’s Max families program that has really helped me as I forgot my ideal world and now I’m working.
I’ve got new goals set for the year. I’m studying and it’s helped me to focus on what I want to achieve, because we do forget ourselves as parents and that you can do both, yeah.
To find out how we can help you and your family, contact us on 02 9603 7011 for a private and confidential conversation.