My son called late at night, he rang the bell and my husband went downstairs to answer the door. He came up to me in bed and said my son had told us we had a grandson. I leapt out of bed to go downstairs and my son told me the shattering news that our grandson had Down Syndrome. He cried and cried, he was angry and kept repeating over and over again, ‘why me? why me? why me?’ All I wanted to do was to see my grandchild, to be near to him. I knew little about Down Syndrome and nothing at all about the support or services for children and families dealing with the issues relating to Down Syndrome in Ireland.
My son and his wife gave my grandson all the extra attention and much love and affection as they raised him within our family. My grandson has always won friendship, mainly because of his sense of humour. He is lovable and adorable, although he can be a tyrant at times. A strong hand from his dad helps to guide him on the right path. He attends a special needs school, is active in the Special Olympics and has won several gold and silver medals for swimming and other sports. His most serious problem is his speech. He knows what he wants to say but his diction is inadequate and others have great difficulty understanding him. As this causes him such frustration, his parents have spent a lot of money on private speech therapy, because the services are simply not available otherwise.
One of the most emotional experiences associated with being his grandmother occurred quite recently. His parents came to collect him at my house and he threw his arms around them. His total openness, love, gentleness, affection and sense of security with those he loves is overwhelming and I had great difficulty holding back the tears.
However, the places for teens and young adults within the Irish services are extremely scarce and poorly resourced, and the cutbacks have already begun to bite hard. After reading the book, I was left feeling devastated that I couldn’t see a future for my grandson, from the simplest supports like medication for his asthma, to respite care for parents and families caring for a person with special needs 365 days a year. I worry that, as he makes the transition from teenager to adult, the support and care he needs outside the family environment in Ireland is simply non-existent.
I loved reading this book on grandparenting a child with special needs and it gives useful advice. However, I would have appreciated some tips that families can adopt when trying to maximise access to services wherever they are based.