"Medical cards should be given to all children with special needs, the very week they receive a diagnosis"

Rosemary Kratschmar cares for her son Sammy who has Down Syndrome. Here she talks about the challenges her family face on a daily basis

carers ireland

Rosemary Kratschmar and her son Sammy who has Down Syndrome.

Today marks the launch of Family Carers Ireland, a new organisation formed by the merger of The Carers Association and Caring for Carers. We hear from Rosemary Kratschmar about life as one of Ireland’s over 200,000 family carers.

I have been married to Siegi for the past 35 years and we have four children - Zoe, Zara, Stephanie and our youngest, Sammy, (23) who is a person with Down Syndrome. Sammy is a lively lad and he attends Stewarts Care Services in Palmerstown where he is getting an excellent all round education there from the dedicated staff. He can read, do basic maths and his writing is improving all the time.

He is a kind child and always looks out for others. He has trophies for basketball – he can even shoot baskets backwards – as well as bowling and running. He is also a dinger on the snooker table and would search Google and YouTube all day if given the opportunity to stay on the computer. He is known to man and dog in our neighbourhood as he has a habit of wandering!

The Early Years

Sammy was diagnosed with Down Syndrome the day after he was born, and with the mask of 47 chromosomes, our lives had changed for ever.

In any one week, we could have had up to five or six appointments to attend. Much of our time was spent traveling between hospitals while battling to come to terms with the recent diagnosis and beginning to assess the other health aspects related to Down Syndrome.

Bringing my child from one hospital to another and seeing his distress and discomfort as he was prodded and probed for a variety of tests made me very upset - an already fraught parent. And all of this as I was trying to hold down a job and tend to the needs of the other children in the family. It was so draining; I often wonder how more people don’t crack up under the strain of it all.

Don’t get me wrong – my son received wonderful care and I am indebted to the numerous doctors, nurses and caring staff that he is as healthy as he is. However, it sometimes became too much and there seemed to be no end to the merry-go-round.

Daily Stresses

These days, the hospital visits are less frequent and less stressful as Sammy is – for the most part - a willing participant, except for the dreaded blood tests. Being the carer of a child with special needs is still a huge responsibility, but the stressers are now slightly different.

To begin with, Sammy must still be accompanied no matter where he is or goes - at home, on the way to school, to his various clubs, basketball, bowling etc, and we also have to stay with him during his training sessions. This means that Siegi and myself cannot decide on the spur of the moment to go out for a walk or out for a meal as we have to organise for somebody to be with Sammy. It also means that Sammy’s siblings are quite tied down as they are often needed to ‘babysit’ their brother.

Everything has to be pre-planned. Having said that, Sammy is very independent. He loves cooking and is very good to make a cup of tea for us. But, he does need assistance with the boiling water and the gas cooker.

A second major stresser can be the financial aspect of rearing a child with special needs. One of the main issues is that it can be very difficult to hold down permanent employment, be it full-time or part-time, when you consider things such as needing time off for hospital visits. Therefore, the family is at somewhat of a financial disadvantage.

Support

A particular bug bear of mine is about Medical Cards – these should be handed to all parents of children with special needs, the very week they receive a diagnosis to alleviate at least one stressor in our lives.

The main carer is the person keeping everything going in the family, by looking after the child with special needs; trying hard to ensure that other children get enough attention; maintaining a healthy relationship with your partner and doing all the regular day to day things that we call life. In the middle of all this, it is difficult but so important to try to find some ‘me’ time - an opportunity to step back and do something for myself, be it simply reading a book or going out with a friend.

I am one of the lucky ones as I have support – centre-based respite, my parents, my own siblings, my children, husband and good friends who help out and step in when needed. However, there are many carers who do not have the support networks that I have. Services such as in-home respite and centre-based respite are essential to family carers as they give the carer a badly-needed break and also allow the carer to give other family members more attention, at least for a while.

As we all know, mental health is essential for a happy and fulfilled life in the normal run of things. The mental and physical health and well being of the main carer of a child with special needs is perhaps of greater significance as so much depends on just one person.

Family Carers Ireland and the services provided for family carers have been so important for me over the years. They have been particularly helpful in terms of emotional support, advocacy and advice as well as practical supports including training and information.

The merger means that Family Carers Ireland will pool best practice, resources and experience from both organisations to create one stronger, national voice and an increased range of supports and services for family carers. The organisation will now be able to offer centres and more services to those in rural and isolated areas as well as stronger supports where existing centres are already located. The Family Carers Ireland National Freefone Careline (open seven days) is 1800 24 07 24 or see www.familycarers.ie