By the time I learn how to work this computer my emotion and momentum will be lost so here goes. Today I took my son David for his first speech therapy appointment in almost two years he was assessed by two speech therapists for approximately 45 minutes after which I was told very kindly that it is probably too late for David to obtain any kind of understandable speech, while this is not leveled at the speech therapists it has to be laid at the system that has failed my precious son. David is seven years old and from the day of his birth we have fought for him, his first breaths were fought for as his little heart was so badly damaged it was a miracle he was alive at all. He was in special care babies for his first few weeks and he was put on a waiting list for heart surgery. We wanted to take him home so the nurses taught us how to tube feed and give him his medication which read like a medical journal. We could not take him out in case he got an infection as it would kill and our lives revolved around feeds which we did every two hours. People can tell you where they were when the new millennium came in, well we were at home with our daughter Rebekah without whom we could not have coped and David who might not live to see 2001. I cried so much I thought my heart would break even now I can’t go back without feeling pain.
Thankfully David had his operation on the 13th January 2000 and all went well but our journey was far from over. David was very weak and still had to be tube feed but gradually over the next few months he started to put on weight so our consultant told us to try and get David to take a bottle which proved to be almost impossible as he had no sucking movements we tried everything, our house was full of every kind of bottle, teat, cup and anything we could think of to get him to eat. But we slowly got him to take drinks with a straw but he could not take solids and so started another long battle which still goes on. David had physiotherapy for the first two years until he got up on his shaky little legs and started to walk but after that he got very little. He was assessed every eight months or so but he really needed more. He started speech therapy when he was nearly two he had a few one to one sessions but after that it was in group sessions. But he needed much more and I couldn’t get them for him. He was still very bad at eating solids so I took him to anyone who could help but everything we tried failed. Eventually a new therapist told me to thicken his food with crunched up biscuit crumbs and he started to allow small amounts of solids and over time we have increased this so he now eats his dinners but will still not eat a bar or a sweet.
He attends St Brigids School in Dundalk where he received speech therapy for the first year, but the school that needs speech and language more than other schools has not had a therapist for almost two years. This is such a wonderful school and the staff has helped David to achieve so many goals that we are very lucky as parents that he is happy and loved at St Brigids. It must be said that a great injustice has been done to children who already have had to fight so much. We have been on this journey for seven years we have cried a million tears, but for a government and its health service to have got it all so wrong and punished the weak and vulnerable of our country they must be made to see the pain and suffering they are causing on children and their families.
I have never asked for any special treatment for David just for what he is entitled too which is the right to be the best that he can be. I will finish with this: It is and has been my privilege to be David’s mother the love he brings to our lives and that of his two beautiful sisters Rebekah and Victoria cannot be measured, our lives have been blessed with this child who wants nothing from us but love. The system has failed us but it must not be allowed to go on. Don’t let this happen to other children too little too late stops now.