Tipperary parents "major concerns" for American Down syndrome son (16)

Liam Kovach needs 24/7 care

Dylan White

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Dylan White

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dylan.white@iconicnews.ie

"Major concerns" for American Down syndrome boy (16) living in South Tipperary

Liam Kovach with his parents Barbara and George.

A Tipperary couple heartbreakingly admit that they have never had a “solid conversation” with their 16-year-old son.

Clonmel native Barbara (née Brennan) and Pennsylvanian George Kovach are full time carers for their teenage son Liam who was born with Down syndrome (DS).

The family moved to Cashel from the United States in 2009 in the hope that Liam would get the education services he needs to have any sort of a promising future.

However, the grass hasn’t been a great deal greener in Barbara’s homeland, with every day a constant struggle for Liam and his parents. “Liam needs more speech and language therapy, a plan for his transition into adulthood, and assessments need to be done,” Barbara tells The Nationalist.

Liam is in middle two at Scoil Aonghusa in Cashel and gets assessed through the Brothers of Charity every so often. “The Brothers of Charity believe Liam has ASD in addition to DS. He is on a waiting list to confirm the diagnosis with 18 months,” Barbara, a past Loreto Clonmel student, continues.   

Barbara and George have “major concerns” for Liam’s future. “If something were to happen us and if Liam didn’t have siblings what would happen to him? He will be classified as an adult once he graduates from Scoil Aonghusa at 18-years-old, yet at the same time he will still only have the mind of a child.

“It has been 16 years and I have never been able to have a conversation with my son about how his day in school has been because he can't tell me,” George emotionally emphasises.

In addition to DS, Liam was born with a heart defect. He had cardiac failure at one month old and open heart surgery at 10 months. “Liam got very good treatment in the United States at first, but when it came to education it was different,” George recalls.

“Liam went to mainstream school and was put in a special needs classroom separate to the other students. The people that cared for him were assistants who were not qualified but thought they knew how to look after someone like Liam because they have kids of their own. They were putting children with special needs in 'time out'. It was crazy.

“Liam is non-verbal, and they didn’t know what he wanted and needed. It really hindered his development.

“A lady would come to our house before school. She wasn’t considerate to Liam being Liam and was very textbook in her approach. All kids with DS were the same to her and it wasn’t doing Liam any good.  

“Overall, our experience of early intervention in America was that it was very state orientated. By federal regulations we qualified for everything, but then states would put their noses in and we had to fight tooth and nail to get anything for Liam,” George suggests.

Barbara says Scoil Aonghusa has been “fantastic” for Liam, but they continue to face a battle in getting Liam the therapies he needs on a regular basis. “What Scoil Aonghusa has done for Liam goes beyond words,” Barbara praises.

“When he gets sessions you can see it in him as he becomes more open. However, Liam reverts back when he doesn’t get the sessions and they have become less frequent as of late.

“He gets speech and language therapy every six weeks with DS Ireland’s Tipperary branch which is a huge help because the therapist there does everything with a clap, but he needs more consistency in school,” Barbara believes.

Liam Kovach (16) with his parents Barbara and George.

George also reserves praise for Scoil Aonghusa, while underlining the need for routine in Liam’s life. “When they see him fidgeting around they know something is wrong.

“One time, Liam became dazzled at a fun run and stalled at the start line. His friend ran back, took him by the hand and helped him through the race. It was a special moment and showed how close all the students are to one another.

“But when people change both in the school environment or in his daily life it can be upsetting for Liam. He used to get speech and language therapy twice a month, but now it has been reduced to every few months. When his notes come home we can see the things he’s developing and reverting back in.

“When it comes to appointments, kids like Liam can’t be in hospital waiting rooms for hours on end because if their routine gets disrupted they become disruptive,” George states.   

Barbara describes other difficulties Liam faces daily. “Liam suffers from dysphasia and is totally incontinent. He wears pull ups and we are constantly washing him. We have to lock up all the windows and doors in the house or he’ll be gone. He suffers anxiety to the extent that he becomes physically sick,” Barbara underscores.

George stresses that Liam has no concept of danger. “He managed to escape out of our house back in the States and ran down to a neighbour’s garden that had a swing and a big dog. He is slick in what he does and needs constant supervision. We have to hold his hand when we are in town or he’ll be gone and he can’t call out.

“If Liam is playing ball with his friends he will throw it away from them and when they go to get it he’ll run off in the other direction,” George illustrates.

Barbara and George’s entire lives revolve around Liam. “I don’t know how people do it by themselves. There are certain things he’ll let me do and other stuff George has to do. We have learnt some sign language so we can communicate with Liam,” Barbara highlights.

But despite their struggle, Barbara and George are devoted to their son, finding light even in the darkest of moments. “Liam gets respite every so often at St. Rita’s in Clonmel. They take him to the seaside, to the cinema and bowling alley. He has a great relationship with his older brothers Aaron and James, nephew Lewis and niece Mya.

“Liam loves to listen to music and plays the mouth organ. He is a fabulous artist, watches films and enjoys playing air hockey with his dad. He competes in Special Olympics competitions around the country and has won medals for swimming and equestrian. We left him go to Lourdes with the Irish Pilgrimage Trust at Easter and he had a ball,” Barbara smiles.

Liam and George had some quality father and son bonding time recently when they watched their number one team Pittsburgh Penguins win the Stanley Cup. “Liam really is a happy go lucky kid,” a proud George adds.