Trim mother's heartfelt plea to politicians to do more to help children with special needs 'who deserve better'

Exhausted parents battling severe delays, lengthy waiting lists, and lack of support from vital agencies like the HSE, Children’s Disability Network Teams (CDNT), and Child and Adolescent Mental Health Services (CAMHS), took their campaign to the Dail this week.

The Every Child Matters Campaign is a parent-led, grassroots movement that originated in Meath and Cavan to fight for urgent improvements in children's disability services across Ireland and it has grown to a campaign covering new counties across Ireland each week which has cross party support.

Speaking in the Dail's AV Room, Trim woman Mandy Clarke-Garry told politicians about her daughter Jade (11) who has complex autism and an intellectual disability.

She outlined the many hurdles they faced to try and get her the services Jade needs, "My child has been to A&E two times this year in an ambulance. The first visit they handed me a leaflet for As I Am. That is not good enough. Something needs to change."

She spoke of being passed from one organisation to another and from one professional to another.

Mandy said what they were looking for are rights enshrined in legislation. "We want to see a law brought in, so that our children's rights to the services they need are protected. At the moment it is only the right to an assessment of need that is protected,"

After the meeting Mandy said they felt everyone has listened. "We were heard, but we don't feel that it will mean anything changes. We will be continuing this campaign," she said.

Deputy Johnny Guirke said it was absolutely deplorable that people have to fight for services like this.

"They shouldn't have to come to the Dail. They are drained and exhausted, because they will do whatever they have to for their children. They have to fight for services.We heard some powerful testimonies from the families. It was shocking."

Jade's 17 year old sister Kayla featured in a very moving video explaining the ordeal the family faced and still face to get Jade the help she needs.

'Jade has complex autism, a she combined type, and an intellectual disability, but none of those words define my sister. She's just Jade'

Kayla Garry (17) on sister Jade

This is my little sister, Jade.

Jade is 11 years old. She is funny, loving, beautiful, and completely unique. She's the biggest personality, even though she's non speaking.

Jade has complex autism, ADHD combined type, and an intellectual disability, but none of those words define my sister. She's just Jade. She's our little sister, our daughter, our family, and she means everything to us.

But for as long as I can remember, my Mam and Dad have had to fight for everything for Jade. They had to fight for her assessment of need,. They had to fight for a school place. Jade went through three different schools before the right school was finally found for her.

When she was younger, we were lucky enough to have Enable Ireland, where she received great therapy and support. But then Jade was moved to CDNT 0to18 team and the consistency disappeared.

In seven years, Jade has had nine different speech and language therapists. Nine different people, never the same person consistently.

Then came to the last two years. And this is the part that is hardest to watch. Jade went into crisis, the little girl who once wanted to explore the world came completely withdrawn from it. She didn't want to leave her bedroom. She didn't want to go places. She didn't want to engage with the world around her, and then came the self injury.

The head banging, the fear, the A&E visits. Last October, things became so bad that Jade had to be taken to A&E by ambulance. My Mam and Dad were terrified, and so was I. They brought their little girl to hospital because they didn't know what else to do. And what did they leave with? An AsIAm leaflet. No, plan, no real support, no solution. Just a leaflet. And they went home with Jade still in crisis. They were then referred to CAMHS, but CAMHS refused her three times because she is autistic. So my Mam had fight again.

This time, we got a cognitive assessment to show Jade has a mild intellectual disability, so that the CAMHS ID team would take her on. Think about that. We needed to prove another part of my sister's disability to try to get her through another door. Jade was passed from CDNT to CAMHS and back again.

Eventually, Jade was prescribed anti-psychotic medication because of the severity of her distress and behaviours. But then, the doctor who was managing her medication left, and once again, my Mam was left fighting to make sure Jade was monitored and supported. Another service, another referral, another person to explain Jades's story to.

Then, in August, Jade ended up in A&E, another frightening trip for our family. Another doctor questioning whether what they could be seeing could be absent seizures. For the first time, someone was looking beyond behaviour and asking whether something else could be happening. After a three day hospital stay, Jade would referred on to neurology. But my Mam and Dad were left with more questions. We were later told by neurology, what was being seen was mostly likely behaviour associated with her autism.

And now the CAMHS ID doctor has withheld a medication plan until neurology rules out seizures. So once again, we're being passed around. From one service to another, from one opinion to another, and in the middle of all of it, there is Jade. My little sister, still waiting, still struggling, still needing someone to take responsibility for putting all the pieces together.

And even this week, my Man is still making the calls. Still chasing answers, still asking what happens next, and still, no solution. This isn't just paperwork or waiting lists. This is my sister's life. And while all of this is happening, Jade is still Jade. She's still the little girl who makes us laugh. She's still the little girl who have more than words just can explain. She's still here and she deserves better. Jade deserves to be listened to. She deserves consistency and support, and most importantly, Jade deserves childhood. She's not a waiting list. She's my sister. She is Jade.