Parents' expectations for their newborn baby's life can be shattered when their child is diagnosed with a special need with knock-on consequences for the couple and family, writes GORDON DEEGAN
‘TO BE told that there is something wrong with your child is definitely the same as being told there is a death in your family.”
Ennis woman Anne Norton recalls the moment 11 years ago when her daughter, Nicole, was diagnosed with cerebral palsy.
At the ‘Clare Crusaders’ clinic in Barefield outside Ennis, the mother of three remarks: “Everyone expects their child to be perfect and normal. Everyone has this idea when you’re pregnant you are going to have this wonderful little baby.
“When I was pregnant with Nicole, I used to have this idea that she was going to go off and do so much with her life. You never expect that something can go drastically wrong.”
It was not until Nicole was 13 months old that medical personnel diagnosed her with cerebral palsy.
Anne says: “It was a bigger shock to us the fact we had got through her first year and that she was perfectly healthy and normal and everything was going to be fine.”
With the diagnosis, Anne says: “You don’t know how you are to deal with this, you’re not asked whether or not you need help or asked ‘do you need someone to talk to?’ We were told that Nicole had cerebral palsy and to take her home and care for her.”
Anne says that Nicole’s paediatrician at the time compared her to a bicycle in trying to describe the challenges ahead.
She adds: “My child was described as a bike, this was how a paediatrician broke the news to us. We were told that if you leave a bike outside a door, and you don’t cycle it and leave it out in the rain, it will seize up. That was how cerebral palsy was described to us. That to me was one of the hardest things.
“I remember leaving, thinking and wondering ‘how did this happen to me? What have I done wrong? Did I not look after myself? Why is this happening to me, I don’t deserve this’.”
The pressures of dealing with the diagnosis quickly took its toll on Nicole’s parents’ marriage and within six months of the diagnosis, the marriage was over.
Anne says: “You either sink or swim. When you have a baby in your arms, you have to put all your focus on your child and I think then, that has a huge impact on your marriage.
“My own first marriage went down very, very quickly after Nicole was diagnosed.
“We were very young. We were 23. We had huge expectations about what we were going to do with our life.
“Nicole’s diagnosis was a massive, massive shock. There was a lot of pressure and a lot of unknowns. It was something that you have to take on board and try to cope with and, unfortunately, my ex-husband couldn’t.”
One feature that Anne has noticed in coming into contact with other couples with special needs children “is that a lot of men find it difficult to deal with the fact that there is something wrong with one of their children. I think men seem to deal with it harder than women.”
She goes on: “Nicole needed 100 per cent care and I had to give her that. I could have fallen apart. I looked at this child, I had a nine-month-old baby along with an 18-month-old baby and no husband.”
Over the past 11 years, Anne has come into a lot of contact with families with special needs and even more so since 2005 with her work with the Clare Crusaders, which provides a range of free therapies to more than 120 special needs children in Clare.
She says: “A lot of marriages of parents of children with special needs don’t survive because of the pressures involved.”
She adds: “The other side of it is I look back now and I have to say that one of the best things that did happen to me was that my marriage did break up, because I got a chance to look at myself and look at what I needed to do to build myself up.
“I made strong decisions on how I was going to rear my children and move on and I did move on.”
Director of Counselling Services at the Californian-based Speech and Language Development Centre (SLDC), David Cavanaugh, says the rate of marital break-up with parents of special needs children is twice the average rate.
Therapists from SLDC are to run a series of workshops at a four-day long seminar in Ennis this week hosted by the Clare Crusaders on the challenges faced by parents of children with special needs.
Cavanaugh says: “Special needs kids take so much time and energy and often financial resources that families find it difficult to find time for each other.”
He says: “I think that the stress of just having children and keeping a relationship together is difficult enough, but when you have a special needs child in there who needs a lot of time and attention, that makes the stress much higher.
“As a result, there are a lot of single parents out there raising children with special needs.”
Cavanaugh says at the outset when a child is diagnosed with a special need “there is a real grieving process for the dreams and expectations that the child won’t realise that a lot of parents don’t really understand”.
Cavanaugh says it is important for parents of a child with special needs not to deprive themselves of an even larger family.
He adds: “When the first child born is a special needs child, there is a tendency not to have other children. The parents would be concerned that another child may have a disability or that they are concerned this one child will demand all their time and attention.”
Cavanaugh adds that in order to ease any strain on marriage, couples should create a support system of family and friends who understand their special needs child so that they can be involved and that parents can create time for each other.
Anne Norton echoes this. Six years ago, she married Cathal and they had a child, Conán, along with Nicole and Lauren from Anne’s first marriage.
She says: “One thing with myself and Cathal is we always made time for each other and it is something that we always had.”
She adds: “You have to make time for each other, first and foremost and if you don’t, you lose track with what is actually happening and you get to the stage where you don’t know each other.”
She says: “I think that is really, really important. I see how easy it is to get into a rut of not having the time and always being tired and you always have an excuse not to go somewhere and not to do something, but we have always had to make that effort.”
Cavanaugh says: “The relationship between the parents is really the bedrock of the family. If they make time for themselves and keep their marriage and relationship strong, that is going to help the entire family situation.
“A child in a loving stable household is going to do much better than in a house where there is conflict or stress. All kids pick up on the feelings around them.”
He says: “The mistake a lot of people make is in thinking that the lower cognitive functioning kids aren’t aware, but they are completely aware of their surroundings and what is going on.
“They may not have words for it and may not be able to tell us about it, but they definitely feel it, are aware of it and are affected by it.”
Cavanaugh adds: “Families with special needs kids sometimes feel overwhelmed but it is important to stress that they are not always in crisis. There are joys and celebrations and happy times with kids with special needs.
“The important thing, as much as possible, is not to make the special needs child the centre of their family so that the activities of everybody don’t revolve around the special needs child,” he says.
Anne remarks: “I would consider all my children are treated the very same and I don’t think you should actually treat a child with special needs any different to any other child, because if you do that, they will always feel that they are different.
“I don’t feel sorry for Nicole. We have never felt sorry for Nicole and there is no reason to feel sorry for Nicole, because at the end of the day, she has her own life.”
For more information on the international seminar being hosted by the Clare Crusaders in Ennis until Friday, visit clarecrusaders.ie
CLARE WORKSHOPS: CENTRE ON SPEECH AND LANGUAGE BRINGS SKILLS TO IRELAND
The visit by therapists from the Californian-based Speech and Language Development Centre (SLDC) to Ennis this week arose from a recent visit of Clare woman Jean Maguire’s family to the centre.
At the centre, Jean’s son received speech and language therapy.
She says: “We were the tenth Irish family to travel to SLDC. During our time there we found the advanced techniques and positive attitude of the SLDC staff both amazing and inspirational. They introduced us to a variety of new programmes and techniques which gave us great encouragement and direction in helping our son.”
She added: “Before leaving California I approached SLDC with the idea of hosting an event in Ireland to help other Irish families. The lack of services and support in this country means that parents are often left feeling isolated and frustrated.
“I thought this would be an ideal opportunity for parents to help their kids. I then spoke to the Clare Crusaders charity, where my son receives speech therapy, to consider hosting the event with SLDC.”
The SLDC with a staff of 220 provides care to 340 children.
A total of 30 workshops will be hosted in the Auburn Lodge Hotel Ennis from today, the 6th, to the 9th of April and will feature topics such as vocabulary development and communication, teaching social communication skills and managing behaviour at home and in the classroom.
The Ennis programme will also feature practical sessions on topics such as living with a child with special needs, sensory processing, reading and homework skills among others.
Gordon Deegan
