Difficult to navigate with lots going on, traffic in both directions, potential danger everywhere AND a journey to complete.
Dylan had been working hard at home on crossing the road and adhering to road safety in an effort to increase independence with slow but steady progress.
I can walk along the pavements with him and I don’t need to request that he holds hands with me anymore. He often just links arms with me for stability, Dylan tires so easily when walking, and knows when we approach the kerb that he needs to hold hands, stop at the edge of the road and await either verbal instruction or discussion about our surroundings and how we can complete this crossing safely.
Now we are in Greece the rules have changed. We have a 20 minute walk from the hotel to the beach. The traffic is fast and flows on the opposite side of the road. There is a large volume of noisy older cars and scooters and an absence of pavements. There is literally a fainted partially painted line approximately half a meter from the edge of the road. This indicates where the walkway finishes and the busy road starts. The difference between Greek and UK roads is huge.
We have visited Greece for our holidays for the last 4 years so we are accustomed to the differences. Dylan manages this well usually.
This time round with the teenage defiance, agitation brought on by the blistering heat and non stop sweaty hands Dylan refuses to hold hands; absolutely point blank at times. It’s exasperating and terrifying just like when he was 6 or 7 and we could compromise by having him hold onto Graces pushchair. Today we have nothing but empty pleas and trying to hurry the situation along, frantically trying to avoid a catastrophe.
Not having the safety net of Graces pushchair I’m increasingly panicking until Josh calmly steps in.
“Mum, let me try.
C’mon Dylan lets get out the sun”.
Thanks Josh x
It’s been a wonderful day on so many levels. We have been a family. We have looked after one another, focused on one another and been there to support and enjoy one another. A real family Christmas, it’s been great.
But it’s also been a time for reflection. Now this is not a sad post but one to remind of how fragile we all are, how every moment should be relished and enjoyed and how we should focus on what’s really important and not get lost in the smaller issues.
I’m holding my little ones close tonight when thinking of the international terror that’s been occurring in recent months. Feeling lucky that I am born where I am rather than a war-torn climate. I’m feeling thankful that I am loved and that both myself and my loved ones are healthy.
I am thankful for my steely determined views and that I am surrounded by people who believe in me, take a chance and allow me to act on my beliefs and hopes.
I am reminded that this time last year things were so different. For Dylan theres been so much progress made, developments, friendships blossoming. But also in wider circles unexpected deaths, changes in health and some relationships shattered. We don’t know what’s around the corner; none of us do. That’s why it’s so important to live in the moment. Take a chance, right here and now and make it matter.
Wishing everyone a merry and peaceful Christmas xxx
How can caring affect families?
When a child is diagnosed with a disability the amount of information and support offered to the family varies. Families can feel very alone and unsure about how to support their child, or what will happen in the future. Seeing challenging behaviour appear in a young child can be upsetting and confusing. There is a lot to learn and getting professional help and specialist services can be difficult.
Families are often socially isolated and can be left out of family events, activities and places in the local community because of their family member’s behaviour. Family carers say they have feelings like stress, frustration, anger, guilt, shame and loneliness, or feel that no-one understands what they are going through. Feeling low or stressed can sometimes lead to mental health problems like depression or anxiety, that need medical help. Relationships break down more often for people whose son or daughter’s behaviour challenges. Finding support and time alone to relax is really important, but can be hard. Meeting other parents is really helpful to get support and to share ideas of what has helped.
Eating well, exercising and getting enough sleep can be tough when your family member’s needs come first, especially if they have sleep problems. Families can plan their time to do activities that are good for all the family and be healthy together.
Parents might not be able to work and extra money is spent if things get broken or equipment and changes are needed at home. There are benefits, direct payments and grants that families might be entitled to.
Taken from the Challenging Behaviour Foundation Website http://www.challengingbehaviour.org.uk