TEENAGER Tommy O’Shea spends his days living in a world of his own.
The 17-year-old from Bartlemy in East Cork has diagnoses of autism, ADHD and Obsessive Compulsive Disorder (OCD), and is non-verbal.
He has to use a picture book made by his mother, Terry Garde, to communicate.
But his quality of life could be so much better.
Recently, a language therapist at Tommy’s school suggested he could benefit from a new speech generating device, and Terry signed up for a free trial.
When he first used the machine, the benefits for Tommy were immediate, when he was able to complain about a pain in his stomach.
However, the free trial period ended last Thursday, plunging the teenager back into a world of forced silence.
It would cost Terry around €4,000 to buy one, a sum that is beyond the stay-at-home mum.
She says there are similar mobile applications available, but Tommy can’t use their phones properly, so he gets frustrated and breaks it.
The new device, however, is both water- and fall-proof, and Tommy buries his face in his hoodie in delight, laughing, each time it speaks on his behalf.
“You can stand on it, and it won’t break,” Terry explains.
Now, she has launched a crowdfunding campaign to directly buy the speech generating device from its American manufacturing company, Tobii Dynavox. She has raised more than €2,200 so far, so is more than halfway there.
The HSE offers a financial grant for the machine, but to avail of it, Terry would need to go on a waiting list — and Tommy needs to graduate this year. He also has to move on to adult services after graduation, an entirely unknown experience for him.
“It’s going to be all new people, and new staff and surroundings,” said Terry. “He needs this device, he should be able to get himself across.”
Her life has been so entwined with that of her son for the past 17 years, that discussing her personal life brings Terry to the verge of tears.
“I better not talk about myself because it upsets me when I start talking about me,” she says.
The Cork mother still has to bathe her teenage son, brush his teeth and revive him every time he chokes on his food, which she says is quite often.
Terry wants the HSE to provide support for her in caring for Tommy. She has met with her local TD, Jonathan O’Brien of Sinn Féin, who has written on her behalf to the HSE on two separate occasions, asking the health services to provide aid for Terry, to no avail.
Terry says the HSE’s disability services are not doing enough for people with mental disabilities and their carers, and says she has wept with frustration while on the phone to their officers.
“I rang that office bawling my eyes out. Now the girl is lovely to me, and she says she will get them to ring me, but I heard absolutely nothing,” she says.
“They say all the right things, but nothing happens.
“If I could say anything to the HSE, I would say they need to listen to us, it’s too late when something bad happens.”
The HSE’s press office for Cork and Kerry did not immediately reply to a request for a comment.
Terry is separated from Tommy’s father, with whom she also has a teenage daughter. She also has two children with her current partner, both under the age of ten.
“I wrote letters to the disability services, I told them how my relationships is suffering, and it is, badly. I told them I can’t be a mother to my other babies,” Terry says.
“In this country, for you to get help for your mentally ill child, that is under 18 years of age, you have to put them in the car and bring them to Mercy Hospital and walk out the door, but who can do that to their child? I can never do that.”
Terry has even travelled to Germany, looking for a cure via stem cell therapy, spending €13,000 garnered through a crowdfunding campaign.
She says Tommy began developing speech, after a session of stem cell treatment, but once the effect wore off, he went back to silence.
“We did a brain scan, and they said he has frontal lobe atrophy, which means he has dead cells in the frontal lobe of his brain, so I scoured the internet and came across stem cell treatment,” she says.
“I fund-raised for it, and we went to Germany. He started getting speech within days, I swear to God. But he regressed, it’s that type of thing that you have to do regularly, so the cells start growing.”
If you wish to donate to Terry’s crowdfunding campaign, see https://www.gofundme.com/tommy039s-voice.