Health

 

Making Christmas special

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Christmas is a time to reflect on families who may be having a difficult time. Dr Nicola Davies talked to two parents of children with special needs about how they cope

 

One of the most devastating experiences is to be told your child has a mental or physical disability. Coming to terms with a child’s special needs diagnosis is akin to going through a grieving process.

 

Parents may experience a gamut of emotions, including shock, anger, disappointment, and guilt. You may also find yourself re-evaluating your hopes, dreams and expectations for the future.

 

As the parent of a special needs child, you will face challenges in

navigating your child’s care from diagnosis and intervention, to long-term planning. But your child will also bring love and joy to family life.

 

Embracing the challenges

 

Raising a child with special needs can be a huge challenge.

Here are some tips to help you through:

 

KNOW THAT YOU ARE NOT ALONE

There are other parents going through similar challenges. Search for parent networks and support groups online and in real life.

 

PAMPER YOURSELF

You are in a position where you have to care for your child constantly. You also need some caring and pampering. Go for a spa. You deserve it!

 

FORGIVE YOURSELF

Even when you try really hard, sometimes things will go wrong. That’s okay. Don’t beat yourself up about it.

 

DON’T LOSE YOURSELF

Have an identity apart from being a parent. Do things you enjoy such as writing, reading for pleasure, or shopping.

 

DON’T LET OTHER PARENTS GET YOU DOWN

Remember that parents who don’t have a child with special needs might not always understand. Explain, teach, and raise awareness among those who do not know.

 

SPEND QUALITY TIME WITH ALL OF YOUR CHILDREN

Take the time to play with them and enjoy the moments. Read with them, go for a picnic, or snuggle up on the settee.

 

CELEBRATE THE LITTLE THINGS

A minor development your child has made is huge! Share it with those you love. Be proud and brag about it.

 

SPEND TIME WITH YOUR PARTNER

Raising a special needs child is hard work and time-consuming, but you need to make time for your relationship too.

 

TAKE CARE OF YOURSELF

Eat well, exercise and meditate. If you are healthy, you will be better able to take care of your child’s needs.

 

COMMUNICATE WITH YOUR PARTNER

Understand and define your parental roles with respect to your spouse. Explain how you feel and in turn, try to understand their perspective.

 

RELY ON OTHER HELPFUL SOURCES

Confide in a friend. Call, write or talk to someone you trust. If required, try professional counselling. There is no shame in needing support.

 

TAKE ONE DAY AT A TIME

Stop focusing on the ‘what if’s.’ Take one step at a time to get through each day.

 

THINK POSITIVELY

Try to focus on the positive side of every situation.

 

‘The future for Austin is unknown’

 

Johanna White is the mother of Austin, who was diagnosed with autism when he was two-and-a-half years old.

 

‘When I was told Austin had autism, I was numb. In the days that followed, I remember crying. I realised that the blueprint I subconsciously had in my head for my son’s future – school, university, marriage, kids – had been ripped apart. It took me a couple of days to digest the information, then I started researching everything I could find on Autism Spectrum Disorder.

 

Austin’s needs have varied over the years: he was not able to speak until he was four or five years old and he suffers from obsessive behaviours. He is also incontinent.

 

The way we have coped is through PECS (Picture Exchange Communication System), which really helped Austin to begin learning to speak. It was useful to show him where and what we will be doing, and for him to request things and communicate.

The other way that I coped is through trying to understand his world so that I could preempt any potential difficulties.

 

There have been many times over the years where it’s been impossible for us as a family to do “normal” things. Going to a restaurant or the cinema would be so tricky. Austin would not be

able to sit still – he would become obsessed with the doors or the

toilets. I would be embarrassed and people would stare and laugh at us. The way I’ve managed is to just let Austin be himself and not care what people think! We don’t let autism stop us from doing anything anymore.

 

Family celebrations and events like Christmas are always a challenge. It is always a concern when there are places and people that we don’t know. Putting Austin into unfamiliar situations is always risky. If things get too much, we just remove ourselves.

 

The future for Austin is unknown in as much as I can’t guarantee what he will do, or where he will go. I ensure I never put limitations on him because of his additional needs. I’m his advocate and I’ll support him whenever I can. I hope he will be able to live semi independently and have meaningful relationships and a career as well, but I’ll settle for him being happy, without the societal pressure of what happiness should be.’

 

‘Kyle will always need someone to take care of him’

Lydia Hamilton is the mother of Kyle, who has been diagnosed with Cerebral Palsy (CP).

 

‘Kyle was born following a long, difficult birth, resulting in CP. His difficulties with being a quadriplegic CP sufferer were not diagnosed until much later when he didn’t meet developmental

milestones.

 

We went through a grieving process for what Kyle might have been, hoping he would make progress and everything would work out fine. I wanted to talk about it, while his father withdrew into himself.

 

At first, his epilepsy was more of a concern than his physical

difficulties, but now that his epilepsy is in remission, physical

difficulties are what make it harder to care for him.

 

In recent years, several websites have begun offering

information, support, resources, as well as friends with a child who

has a disability. It’s important to build up a strong support system when your child is young. Finding out about your child’s right to education and services, and fighting to get entitlements and

funding, is also crucial.

 

Our family Christmas was traditionally held at his great grandparents’ house. But owing to the three steps to access the home, it became difficult. Extended family don’t always consider his needs.

 

Kyle will always need someone to take care of him. The worry remains that the time will come when his family won’t be there to care for him any longer.’

 

 

 

 

November/December 2017

All information is correct at time of publishing