‘Childhood does not wait on a waiting list’... Exhausted parents bring their 'Every Child Matters' campaign to the Dáil

“We can repair the walls, we can replace doors in the house, and we can deal with injuries we get ourselves and our bruises will heal, but Jade's head cannot take much more and that's the part that frightens us.

“Sort out the [disability] system that you have... Someone has to be answerable for these children.”

That was the plea from one of the six exhausted parents who gathered in Leinster House last week as part of the Every Child Matters campaign. These parents have had many sleepless nights worrying about the future for their children, have left careers to become full-time carers, live with the guilt of other siblings missing out on family life, have spent thousands funding private therapies because they were failed by the public system for years. They called for change last week.

One video was played on a laptop screen as the sound system at Leinster House was not working.

That video portrayed the regression of 11-year-old Jade from Trim in County Meath, as outlined by her older sister Kayla.

Jade has complex autism, ADHD combined type and an intellectual disability and is under the care of the CDNT 0-18 team. In seven years Jade has had nine different speech and language therapists.

In the past two years, Jade “went into crisis” and became “withdrawn” from the world.

This part of the video, which has been sent to the Meath Chronicle by Jade's mum Mandy, is hardest to watch. It shows footage of Jade self-injuring. Jade has been to A&E three times this year, one time leaving with an 'As I Am' leaflet, which is Ireland's autism charity, and went home “still in crisis”.

“No plan, no real support, no solution, just a leaflet.”

The family still has “no solution”.

Serena Dawson from Belturbet is a mother of three boys; Nathan (8), Cody (6) and Dara who are her “entire world”. Serena has organised many protests on the issue in Cavan Town alongside Rachel Kearns, to no avail.

Nathan is pre-verbal and has been waiting nearly seven years for speech and language therapy, while he has been waiting almost six years for a psychology appointment. Nathan was “eventually” accepted to CAMHS after many refusals and was “finally” diagnosed with ADHD this year, and was prescribed medication. However, Nathan’s childhood did not pause while he was waiting. He was “suffering” and now has “severe anxiety”.

“He is frightened to go to places he once loved; he is frightened to leave the house because he believes something bad might happen. Our happy, outgoing, loving little boy is becoming a child who is afraid of the world around him.

“There is nothing more heartbreaking than watching your child suffer while you are constantly told to wait.”

“Early intervention means very little when children are waiting years on waiting lists... Childhood does not wait on a waiting list.”

Her other two children are also waiting for therapies.

Throughout the presentation, TDs and senators from both government and opposition attended. From this constituency, Senator Sarah O’Reilly (Aon), Senator Pauline Tully (SF) and Deputy Matt Carthy (SF) were present.

The video described above is posted on the Meath Chronicle’s social media page, and has been sent to Tánaiste Simon Harris for viewing. We have also asked the Tánaiste to outline what the government plans to do in the next three months, six months, and one year to improve the disability services system that is currently in place. We await a response.

Meanwhile, The Every Child Matters Campaign will protest once per month in every member's county, which includes Meath, Cavan and Monaghan.

The Meath Chronicle understands some TDs and Senators have reached out to the group since, and further Dáil meetings have been arranged.