PARENTS OF CHILDREN WITH AUTISM AT BREAKING POINT : STATE SUPPORTS A MIRAGE - Cllr Sarah O Reilly
“This country has parents at breaking point, doing absolutely everything they possibly can for their children with additional needs, while the high and mighty up in Dublin just don’t seem to care. It is both soul destroying and heart breaking and carers allowance must be available to all”.
Those are the words of a young Co. Monaghan Mother whose 5-year-old little boy has Autism and needs constant care.
Grainne McElvaney from Monaghan Town says.
“Our little boy Sonny is 5, he has Autism, he is non-verbal, and he is a huge flight risk which means he could run off at any given second and does not respond to his name. You cannot take your eye off him for a split second”.
“Due to the lack of services I have to provide OT, SLT, Physiotherapy, play therapy and so much more to my son. There is very little time left for being his Mammy which is both a stark and a sad reality for so many parents”.
“I don’t qualify for Carers Allowance because it is means tested. We are grateful and lucky that my husband has a good career, however, I also had a good career and a good income”.
“I had to give that up. I gave that up to take on not 1, not 2, but multiple full-time roles that this state fails to provide for my child”.
“Not only do you leave your job, but you also lose a part of who you are. That sense of self. Your career is a huge part of who a person is. And for our Government to then completely turn their back on you after paying tax your entire career, that is soul destroying”.
Aontú’s Cavan Monaghan candidate in the upcoming general election, Cllr Sarah O’ Reilly says.
“It is both heartbreaking and infuriating to listen to parents like Grainne. I am meeting people like her in my constituency day after day. Carers are working to a standstill and saving this state an absolute fortune. Our Constitution clearly states that “We cherish all the children equally’ but this Government gives lip service to that as it does to so many other obligations that it has to its citizens”.
“It is taking these wonderful carers completely for granted and that is a shameful injustice”. They need support, they are not asking for much, but they feel utterly abandoned by our State. .They are depleted, it’s not like a 9 to 5 jobs, this is 24 hours a day .They are like on a desert island and they see all this virtue signalling and spin on the supports that are supposedly available to them but when they actually go to draw this down, there is nothing there. It is a mirage. They are left stranded, and this is a very lonely place for them”.
“The Government’s largesse doesn’t extend to carers and their families who are truly vulnerable. It is so frustrating to see the money it has squandered with abandon”.
“It is vital that Carers leave must be extended. It is vital they get the financial supports they need. It is vital they receive proper respite. These are human beings of our country, and they are being treated shamefully”.
Grainne continues.
“3 years ago, following Sonny's diagnosis I gave up my career as an SNA and closed the doors of my booming business, Rossmore School of Music. I made this huge decision because it was the right thing for Sonny”.
“My carers leave has now run out because you are only entitled to 2 years carers leave. Do the government think we can wave a magic wand after 2 years and our children will magically be fine? Again, another stark and sad reality”.
“Although I wouldn’t be anywhere else right now, this job is tougher than any job I’ve ever done before. And there has been tough ones! There is no break. There is no teatime. There isn’t even any sleep a lot of nights. And yet, we get nothing, and we have to spend thousands every month paying for private therapies”.
“The full-time care and consistency with therapies is working for Sonny. We are living proof that they work. My son is moving mountains, thank God. But he is only thriving because I am at home, working, supporting and providing therapy for him around the clock. Thriving, because I gave up my Career”.
“I know, that not only am I saving the State a lot of money now, but in the future also. My son is starting to finally speak, but only because I have done the 40+ hours of SLT at home every single week for the past 3+ years. Had I have not made this decision and given up my much loved Career and Business, the State would have a much more dependent adult on their hands in years to come as my Son would not be thriving the way he is if I were not putting my life and soul into”.
“Sonny also has hypermobility. He has had 3 bone breaks to date which were exceptionally challenging times. My husband too had to miss a lot of work around these times and still there are no supports”.
“We have had to kit our home out in therapy equipment and swings to meet Sonny's sensory needs and support his gross motor development. Most local CDNT services have all of this equipment on site, but you need the golden ticket to avail of services and nobody seems to have access to that ticket”.
“Our little girl Robyn Rae is 3 and is also on the spectrum, however, her needs are very different, and she lives a very fulfilling little toddler life”.
“I am also the founder of Sonny’s Dream, an online social media platform that I created just over a year ago to help support other parents and raise awareness around autism and disabilities in general. This has become a safe space for so many parents starting out on their journey, not knowing where to go next, and really a nice networking community for a lot of families, all across the country who badly need help and information”.
“Parents don’t want pity. Parents don’t want promises. Parents just want what’s fair”. They want rights for their children and rights for themselves”.
