Eli: The more support, the more progress
Eight-year-old Eli was born with Down syndrome, and mum, Amanda, says it was a shock to find out before he was born that he would have additional needs.
“Luckily, we are a whanau with experience, and we know other people with Down syndrome,” Amanda says.
“We were determined not to terminate this pregnancy. We were under maternal mental health guidance and were given the option of termination many times. In the end, I had to advocate for my unborn baby and say I didn’t want to hear the risk of mortality or be offered the option of termination.
“Eli is our fourth child, and he was born when I was 39 years old. As a family, we embraced Eli before and as soon as he was born.
“The fact that he was born with Down syndrome has not ever been an issue for us, and we were always willing to put into place the supports he needed.”
Amanda didn’t tell her three older children that their youngest brother would be born with Down syndrome because she didn't want them to worry or compare him to another person, also born with Down syndrome, who was very special in their lives.
“As a family, we see Eli for who he is,” she says.
“Yes, there have been medical issues because of his “condition” but he is very much included in our family.”
Eli struggled with his feeding as an infant and needed speech-language therapy (SLT) support for this issue. He then needed an SLT to support his communication development, something that will be ongoing.
Eli was seen quickly when in the hospital system whenever he had a problem.
But finding and getting regular appointments for his communication development has been more difficult, with delays in service and then irregular input.
“I engaged a private SLT to support his use of augmentative alternative communication devices because the public wait was 20 months-plus,” Amanda says. “Luckily, as a family, we were able to prioritise this for Eli.”
She says all the SLTs Eli has seen have been amazing ... “very respectful of our family and very keen to help Eli.
“But they have struggled to meet the time needed, given their capacity and time restraints.
“Eli has always benefitted from SLT support, as have his family, and we need more.”
As a high user of SLT services, Amanda says there’s a real need for more of them.
“My son is engaged and willing ... it’s SLT capacity that’s been the issue.
“The more SLT support Eli has, the more progress he’ll make.”
The more ways Eli has to understand and communicate in his community, the more meaning and function he can bring to his local and wider communities.
Amanda says this can only be achieved with SLT support.
Eli also needs access to paediatric-trained feeding SLTs to ensure he is swallowing safely and maintains a range of foods in his diet.
He is empowered to set his own goals and follow his dreams ... on his wish list is being able to order his own hot chips at the local fish and chip shop, and perform Moana songs for all to hear.
“For Eli to achieve this, he needs regular, ongoing access to SLT,” Amanda says.
