Cork mum: I will bring my autism fight to the Taoiseach

SHE is most recognisable as part of the Cork family band Crystal Swing - but Dervla Burke O’Connor has hung up her microphone in recent years and become something of spokesperson for parents with autism.

She has explained her frustrations at the resources and available to parents in her position on various media - after her experience as the mother of five-year-old Paul, who has non-verbal autism.

“My husband Tim and I have tried to secure a special school placement and get essential services such as speech and occupational therapy for Paul,” she says.

“Going public was the last resort for us, but unfortunately, we were left with no other option but to highlight the situation in which we find ourselves.

Dervla made people sit up and listen.

“The public response has been huge since I went on The Neil Prendeville Show on Red FM. My recent appearance on the Claire Byrne Show on RTÉ has opened a national conversation. 

"I have been inundated with messages and calls from parents who are facing the same struggles as us.

“Suddenly, I have become an advocate for these other families as well.”

Now Dervla is keen to continue the conversation.

“I am open to sitting down with Government ministers, including our Taoiseach Micheál Martin, HSE officials, NCSE officials and any other bodies involved in special education and health to discuss the current structure which is not working,” she says.

“I will be emailing the relevant people in the coming weeks. I am hoping they will be willing to talk with me.”

The whole system for special needs children needs to be reformed, says Dervla, whose band Crystal Swing, with her mother Mary Murray-Burke and brother Derek, is best known for the hit, He Drinks Tequila.

“As a mother of a non-verbal autistic child with a lot of challenges, I am more than qualified to speak on behalf of our child and all the other families out there.

“Change has to happen. These children are entitled to an education like every other child. It is their constitutional right. We should not have to beg for essential therapies.

“Many of these special people do not have a voice, we as their parents and guardians are their voice. We have to speak up for our most vulnerable children.”

Dervla seeks every opportunity to highlight her plight in securing the essential services her son needs.

“In the coming weeks, I have a lot of meetings. I also have an invitation from Adam Harris (Founder and CEO of AsIAm) to attend a discussion at the Aviva Stadium in Dublin on tomorrow (March 30).

“This is a launch event for World Autism Month. Ministers Josepha Madigan and Anne Rabbitte will be participating at this event on the day. It will be a great opportunity for me to express my views and concerns in the effort to get better s for families like ourselves. I will do whatever it takes to bring change.

“Autism is a very broad spectrum and no two people are the same,” explains Dervla.

“ Thank God, many people with this diagnosis can go on to live normal, happy, independent lives. Other children, like my son Paul, have added challenges and need to go to a special school to help him attain essential life skills.

“He would also benefit greatly from one-to-one therapies, if they were available. It’s a shame on our state that these essential services are not readily available.

“Unfortunately, the services are not there and the limited s we have received up to now are not benefiting our son. 

"We, the parents, are expected to be therapists. My son is not responding to these recommendations. This is an appalling way to treat our precious children.”

Dervla says son Paul has “complex special needs, but I do believe he has great potential if he is given a chance”.

Paul was born in January, 2017, and was privately diagnosed with non-verbal autism when he was two years old.

He is currently attending Cuisle, an Early Intervention Autism Spectrum Disorder Class at St Bridget’s Presentation Primary School, Midleton. This is a specialised pre-school attached to the mainstream school for children with a diagnosis of Autism Spectrum Disorders.

“However, Paul needs to transition to a special school from here,” says Dervla. “Please God, we are very hopeful he will have a school placement in September. We have submitted application forms which are currently being processed.

“It is a great comfort to us, that his class teacher at the pre-school unit is so kind, gentle and patient with Paul. She and her team have tried to do everything possible to and help him in every way. Her correspondence to me continues to be honest and respectful concerning our son. We cannot praise them enough for the love they have bestowed on him.

“There is no doubt, he benefits greatly from routine and structure.

“Much to the shame of our government and the state, we have no special needs school in the hugely populated East Cork area.

“As a result, parents like us are more than willing to travel to outside areas, to receive an education for our child.

“Both my husband and myself and Paul’s little sister, Hannah, are struggling daily with the struggles of rearing a child with the disability of non-verbal autism. We have no s. Paul needs help urgently and we need it as a family. Early intervention is vital for children with special needs. “

Dervla gives a brief description of what living with Paul is like.

“We love him unconditionally, but we can’t help him. We have no training or expertise in dealing with his special needs and his sensory issues. Because he is non-verbal, there is a big communication barrier. Naturally, Paul and ourselves get very anxious on a daily basis and without doubt he needs greater levels of s which we can’t provide.

“It has been a difficult journey this past three years. Getting a diagnosis of this momentum is a huge blow to a family. A grieving process followed. Please God, when he gets the education and essential services he requires, our stress will subside. That is our hope for Paul,” says Dervla.

“Occasionally, I feel guilty that I have not been able to give our little four-old-daughter Hannah much time as Paul requires so much attention. She is a beautiful bubbly, kind-hearted little girl. She is currently attending play-school, which she loves. I have no doubt that she will be a wonderful sister and a great to Paul going forward.

“Tim is a loving and caring husband and parent, who does his best for us in every way. He loves our children very much and is a wonderful role model for them. He is aware of the exhaustion I am experiencing on a daily basis.

“I am forever answering emails and calls and sadly getting nothing in return as regards respite and much needed s for Paul. Tim goes to work every day and I stay at home to care for the children. I am Paul’s main carer.

“We thank God for our beautiful children and like any parent we want what’s best for both of them.”

Dervla adds: “Paul does recognise us, but he does not understand that we are Mammy and Daddy. We long for the day when he will be able to communicate with us. We long to hear him speak and call us Mam and Dad. We long for the day when he will give us a kiss for the first time. We long for him to hug us. We long to tell him we love him so much. We long for him to call his sister’s name. Paul is in his own little world. He is our beautiful little boy, our flesh and blood.

“Social Isolation is a major factor when dealing with a child with special needs. Both the child, the siblings and the parents are literally imprisoned because of the diagnosis.

“To the outsider, it’s hard to understand but every minute of every day is very difficult when dealing with a child with non-verbal autism. Paul cannot attend family gatherings because it upsets him and upsets everybody else.

“I am always tense when I take Paul out because he is always pulling me away from people. So, it is easier stay at home. Of course, it’s no fault of the child. He needs help, which is not there,” says Dervla.

Life can be tough sometimes.

“We can never go on a family holiday. Tim and I can’t go out for a meal or plan a night away, as there is no respite care available.

“With no s, I find it extremely difficult at times. I know many other parents are experiencing these difficulties as well. We should not have to go through the trauma of begging for help.

“I have always been very close to my family. We worked together for many years when we performed as Crystal Swing’. After Paul’s diagnosis, I had to give up my career as a singer.”

What are Dervla’s hopes and dreams for her son?

“My goals for Paul are:

“(1) He will get an education in a special school until he is 18 and he will seamlessly transition to adult services

“(2) He will continue to get a taxi to his special school

“(3) He will get the essential therapies he requires for example Speech and Language therapy, occupational therapy, etc.

“(4) That Paul will get respite care which will benefit him and us as a family.

“(5) That residential care be available to him should he require it going forward in the event of us having a car accident, getting a terminal illness or a family crisis occur.

“And that Paul and other children like him will get the respect that they deserve from our state.

“They are human beings who deserve the same opportunities as every other person in Ireland.

“I hope I have given you an insight into our family life. We love both our beautiful children unconditionally.

“We feel by highlighting our story, we will open up a conversation and please God, also help other vulnerable children and their suffering families.

“I have great faith in God and I trust that he will look after Paul and our family going forward.”