Eli's Story
"Our advice is to always reach out, ask questions, and never, ever give up".
~ Eli's Mum
Introducing Eli, our joyful and energetic little boy who will soon turn nine in September 2023. Despite his shyness, once you're in his inner circle, the love he receives from us, his brothers, and extended family is truly cherished. Eli's favourite pastimes include playing on his tablet, bouncing on the trampoline, and pulling off playful pranks.
At the age of three, Eli was officially diagnosed with Autism, although we were already aware of his condition and communication difficulties prior to that. We went through the Assessment of Need process to ensure he had access to necessary support, unaware of the challenges that lay ahead.
When Eli was just under 2, I expressed concerns about his speech regression to a public health nurse, but my worries were dismissed. They suggested hearing problems and referred him for a consultation on grommets, which he didn't need. During the post-op consultation, we discovered minimal fluid in his ears and were told that "children like him are often sent for grommets when the problem is something else." This was the first time Eli was labelled as "different."
Around the age of 2, I made a referral for an assessment of Eli's needs. After visits to an educational psychologist, an occupational therapist, and a speech and language therapist, Eli received his diagnosis at three years old.
Before his diagnosis, I referred Eli to the early intervention team in our area for support. Once his service statement from the Assessment of Need team, along with supporting reports, arrived, they were forwarded to the early intervention team.
Unfortunately, Eli was left waiting for over three years and technically aged out, receiving no access or support from the Early Intervention Team in North Dublin. However, we did receive some speech and language assistance from the Primary Care Team in our area.
When the new Children's Disability Network Team (CDNT) was established, Eli was assigned an exceptional speech and language therapist who worked closely with us. She played a vital role in acquiring an Augmentative and Alternative Communication (AAC) device for him.
Sadly, this therapist has since left, and no replacement has been appointed due to resource limitations. We've been informed that Eli will not receive any therapies in the foreseeable future.
Like many parents, we turned to private therapies, spending thousands of euros over the years. Additionally, one parent had to give up their career to be available for Eli, impacting our income.
Obtaining an appropriate education for Eli proved to be a challenging battle. We applied to over 25 schools, all of which rejected him except for one mainstream school. Even after submitting relevant applications, we were told that Eli wouldn't have a full-time Special Needs Assistant (SNA).
This worried us greatly because we knew he needed support throughout the day. Eventually, we learned that a new ASD class was opening in a school nearby but outside our area. With cautious hope, we submitted an application for Eli and were relieved when he secured a place. He has been attending that school for the past three years and is thriving.
This glimpse into our journey with Eli through the system is just a fraction of the challenges we've faced. Our home is filled with folders, binders, forms, reports, and applications. We've repeatedly requested psychological and occupational therapy supports for Eli but haven't received them. Advocating for our son's needs can be exhausting and disheartening, but we won't stop fighting until the very end. It's a lonely journey, even though many parents are going through similar experiences.
Often, you're left to navigate the waters alone, learning as you go. However, we are immensely grateful for the wonderful individuals we've encountered along the way – therapists, teachers, CDNT staff, and fellow parents.
Our advice is to always reach out, ask questions, and never, ever give up.
Built with Shorthand