Parents supporting parents

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Having a child with special needs can be a frightening and lonely experience. SNAP (Special Needs Active Parents) offer support for each other, as we are all families with children who have special needs. We have often asked ourselves, ‘why me?’, ‘what did I do to deserve this?’, ‘who do I go to?’ We don’t have all the answers, but we may be able to help and we do offer support.

How we started

SNAP was initially set up after a group of parents enquired about establishing swimming lessons for children with special needs back in June 2004. They had got to know each other at various early intervention sessions provided by the HSE in Dundalk. It was felt at the time that the success of the swimming programmes needed to be built upon and the group started meeting more regularly, exploring new ideas and potential fundraising events to finance them. It was also crucially important for the group that relationships were built between the various service providers and SNAP to help create collaborative strategies for improving services and opportunities for our children.

Vision

SNAP’s vision for the future is to be a positive family-focused group, recognised nationally for providing and ensuring better services, support, activities and information in the pursuit of happy children and supported families.

Mission

The mission of SNAP is to ensure happy children with special needs and their families through dedicated and committed work. We will achieve this by providing and increasing access, in conjunction with other agencies, to services and activities appropriate to the needs of the group members; developing information on various topics and making this information available; organising special events with a social focus for families and children; and maintaining a positive media and awareness campaign.

This year we have organised a weekend away for SNAP families in Share Holiday Village in Fermanagh; a Family Fun Day at Grove Farm & Gardens in Athboy; a manual handling course; a Lámh communication course; swimming lessons for the children; an information night on advanced therapy services; a multi-adapted physical activity sports club (in conjunction with Louth Sports Inclusion Partnership, for 5-12 year old children with special needs and their siblings); a six-week reflexology course for the children; yoga for parents; and we hope to enjoy a Christmas panto again with all the family. We can do all the above because of fundraising and donations—our next fundraising venture is a table quiz, and we also hope to have a sponsored walk in the New Year. Activities for the New Year include an occupational first aid course, a swimming assistant-helper course, an easter egg hunt for the family, a family fun day, and other activities that the children or their families think will be beneficial to them.

Ann-Marie’s story

‘Is there a history of twins in your family?’ the nurse asked. I was thirteen weeks pregnant and having my first scan. The question did not register with me at first, as I had been nervous and was just so delighted to have seen the baby moving. My husband Jim understood straight away what the nurse was saying, as he told me later that he thought he could see two heads during the scan. The nurse informed us that I must come back for a second scan at twenty weeks, ‘just to make sure they are not fighting with each other!’ she said. I had had only one scan with my first child, Niamh, however with twins you get scanned more regularly. We went home and told all our family and friends our wonderful news. We went to visit the consultant at seventeen weeks, and it was then she told us that the scan did not show up a membrane (the divide between the amniotic sac). If it is not present, as the babies grow they may get tangled up in each other which was dangerous. We would have to wait another three weeks for my next scan to confirm if this was the case. For the next three weeks we waited, worried and I prayed. From here on my pregnancy became a worrying time. At twenty weeks we went back for my second scan and the good news was that the membrane was there—faint, but there. It was then that the nurse noticed that the fluid around one of the babies was enlarged and one baby weighed more than the other. Third and fourth scans were organised and each time there was a noticeable difference between the babies’ weights, with one baby weighing a third less than the other. I was referred to a twin specialist who informed us that one baby was getting a reduced blood supply, while there was a possibility that the other baby might get too much supply. This was known as twin-to-twin transfusion. Regular scans followed to track the babies’ growth and progress. There was a strong possibility that the babies would have to be delivered prematurely. At twenty-six weeks I was given an injection to help develop the babies lungs in preparation for an early delivery. At every scan the good news was that each baby was growing, but there was always the concern over the low weight of one of the babies.

At week thirty-one I was having my regular weekly scan when the nurse noticed that the smaller baby’s heartbeat was becoming erratic. The baby was obviously in difficulty. It was 2.30pm on 8 June 2004. The consultant was called and an emergency caesarian section was decided upon. I hadn’t brought an overnight bag with me for these scans, as I always thought it was tempting fate, but it looked like this time this was it. I rang Jim to get him to return to the hospital as he had left to attend a work meeting. I was prepared for theatre and saw Jim for a few minutes before being wheeled away. Jim was not allowed to attend as the situation was serious and unknown. I was given an epidural and the funny thing I can remember was that they let me keep my glasses on. All through the delivery I looked up at the sterile ceiling lights and as one tear trickled down my right eye I wondered what the outcome would be. During my pregnancy I did not wish to know the sex of the babies but I did know that both babies were identical, and therefore of the same sex. When the first baby was delivered they told me it was a boy and I remember thinking that premature boys tend to have a harder time surviving than girls. My first beautiful little boy, Aodhán, was born at 4.39pm weighing just 2lb 5ozs. My second beautiful boy, Fionn, was born a minute later at 4.40pm weighing 3lb 10ozs. I remember hearing them both cry, which seemed a good sign, and seeing each one for a fleeting moment before they were whisked off to the special care baby unit. I was brought up to my room and Jim was taken to special care where he was allowed to see the babies for a few moments. As I had just had a section I did not get to see my babies until the next morning. The nurses had kindly taken some digital photos of them both so I could look at them during that first night. We were told that the first forty-eight hours were crucial and we waited anxiously as tests, checks and scans were carried out. All that time it never seemed real and in my heart I had always thought that everything was going to be alright. The first time I saw my babies it was quite frightening. They were so small, so vulnerable, so beautiful and already such survivors. They got through the first forty-eight hours and things were looking good. However, nothing can prepare you for the roller coaster ride of having premature babies.

With such wonderful care, expertise and technology nowadays, people tend to think that if a baby is born too soon, then it is just a matter of them spending some time in hospital. That is not the case. So many things can go wrong—breathing issues, feeding issues, infection, heart murmurs, to mention just a few. Two steps forward and one step back is how the doctors described it. The boys survived their first week of life without having to be ventilated and all was well. However, Aodhán got a blood infection in the second week and became quite ill. As he was recovering, it was Fionn’s turn to become sick. He also got a blood infection and became very ill. Thankfully they both weathered the storm and three and a half weeks after their birth they were transferred to a hospital closer to home. The boys underwent further tests, checks and scans and it was then that our world fell apart forever.

On July 9, the day before my daughter Niamh’s second birthday when we found out that Fionn had Cerebral Palsy. The day started like any other day. I was up in the hospital visiting the boys and the nurse said to me, ‘Anne-Marie, the doctor wants to talk to you later.’ ‘Grand,’ I said, casually wondering what she could want to talk to me about. The doctor came and along with a nurse we went into a room where she gently explained to me that at some instance in time, Fionn had suffered some damage to his brain. A scan had showed up white matter abnormalities— the area of the brain affected was the motor area which controlled movement and coordination. I listened numbly, not really taking the enormity of the situation in. I rang Jim at work and he came to the hospital straight away. The doctor met with the two of us and it was then that the word Cerebral Palsy was mentioned. ‘What does that mean,’ I thought. Jim summed it up pretty well—best case was perhaps a weak arm, worst case was Christy Brown. I cannot really describe how I felt that day/weekend. Numbness, heartache, sadness for the loss of a ‘normal’ life—Fionn’s and ours. The hardest part was that for four weeks we thought everything was fine. However, I am thankful for the quick diagnosis so that we could prepare ourselves for what lay ahead.

Two days later Fionn had to go to Dublin to get checked, as he had a heart murmur. All was OK and as I put Fionn in the taxi to return to the hospital, Aodhán arrived by ambulance with a suspected hernia, which required surgery. Meanwhile my mother was taking Niamh to the GP with a very bad throat infection—I can tell you that that was the worst day of our lives. Aodhán was so tiny to have to undergo an anesthetic and I remember thinking that if anything happened to him I felt I was going to throw myself out the window. Thankfully, it was discovered that there was no hernia and Aodhán did not require surgery.

Eight weeks after Fionn was born we nervously took him home. He weighed 5lb 15ozs. A week later I took Aodhán home, weighing just 4lb 9ozs. I’d say poor Niamh didn’t know what to make of her Mam and Dad bringing home a baby each week! Life was very tough that first year. Fionn was very unsettled (he didn’t sleep a full night for two and a half years). Both boys needed constant monitoring because of their prematurity and little Niamh was only two years old. I look back on that first year with sadness as I could not enjoy the phenomenon of my babies’ development. With Niamh I had taken delight in her every milestone, with the boys it was just ‘let’s get through it’. I recall attending St Gerard’s Novena where the theme was a renewed heart, and I remember coming home to Jim and saying how can I have a renewed heart when the heart I have has been broken into a million pieces? I was, and am, heartbroken.

The boys are now three and although life is still hectic things have settled down—a little bit! I try not to look too far into the future, I do not yet want to think of wheelchairs, hoists, house adaptations, etc. and I concentrate on all the wonderful little things Fionn has progressed in. There are still plenty of times when I have waves of guilt for not spending/giving enough time and attention to Niamh and Aodhán, but I thank my lucky stars for the three beautiful, loving children and wonderful husband that I have. Fionn’s condition is severe, all four limbs are affected—he cannot hold anything, feed himself, roll, sit, walk or talk. He basically has the physical movement of a three-month-old baby. His needs are great—a lot of time is spent exercising him, developing his alternative communication skills and bringing him to his various appointments. It is a full-time job and I doubt that I will ever return to the workforce. However, he appears to be a bright little boy who is very healthy, extremely determined and has a smile that would light up a room. Aodhán is nothing short of a miracle, very independent and the comic in the family. Niamh is the bright spark, a dynamic, spirited and sensitive little girl who looks out for her brothers. Having a child with special needs changes you. You mourn for the ‘normal’ life your child will never have and you mourn for the loss of a ‘normal’ family life. Your family life comes under so much pressure and is consumed by disability issues. It is stressful and very exhausting, and the strain on your marriage can be immense. Alongside this, you also have to deal with lobbying for better services for children with special needs and that adds to the sadness. Shouldn’t every child have the right to reach their full potential? At times you can feel quite isolated, the forgotten ones, those left behind by the Celtic tiger. On the other hand, it makes you more sensitive to social issues; it pulls you out of the rat race and lets you become more aware of other people’s needs. The child with special needs is an individual in their own right; they should not be an extension of you or how you feel. If they are happy then you should be at peace. And that is what I pray and hope for going into the future—that all my children will be happy.

Conclusion

And so as Ann-Marie has said, we have to fight, lobby and plead, for better therapy, psychology and educational services for our children. To date we have met with Tim O’Malley and Jimmy Devins, former Ministers for Disability, Brian Lenihan and Brendan Smith (then Ministers of State for Children), Dermot Ahern and Seamus Kirk—but to no avail. We have written to all local and national TDs and Senators, and we have received standard replies or in most cases—to their shame—not even an acknowledgment. No ownership. We have written to Minister for Children Barry Andrews, but he sent us a standard letter back stating our ‘issues’ are more appropriate to the Minister for Disability—does Minister Andrews not realise our children are children first, and then children with special needs? Only this week we received a letter from John Moloney—now Minister of State for Disability—quoting paragraph by paragraph a reply we received from Tim O’Malley four years ago?! We have also written to the Ombudsman for Children, European MEPs, Primetime, Questions and Answers, The Political Parties—the list is endless. We have met and made great friends along the way— not just among our parents, but also the people who have run courses for us.
Yes, we are emotionally and physically exhausted, but we will continue to fight to give our children a chance, just a chance, to reach their full potential. You see, we can’t walk away or take no ownership as our children—all of them—are our future. And we love them unconditionally.

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