Matthew’s dad, Peter, has shared his thought and feelings about their journey with Matthew who was born 30 years ago. It’s bitter sweet reading accounts from parents from a totally different generation – it’s amazing to see how they coped and how well their children have done, but it also breaks my heart at how children with Down Syndrome were viewed back then.
Matt is doing so incredibly well – he lives independently and has a girlfriend, Claire.
Sadly Matthew’s biggest supporter his mother Lesley passed away last year from a long battle with Multiple Sclerosis, she tirelessly fought for her son to have the same as everybody else working closely alongside Claire’s mom Sue to help other new parents, they went out in all weathers to spread awareness.
Matthew’s mum loved him so dearly that Peter has really wanted to continue spreading awareness.
Here’s Peter’s account …
What were your biggest fears when your baby was born?
The surprise, shock and the unknown. How would we cope, what would the future hold and how would Matt develop. How would others react to our “different” baby? The open heart surgery at 18 months was a horrible time for all of us, seeing him in ICU afterwards and not knowing how it would turn out was very difficult. All the staff were wonderful and did their very best for us.
Did you receive early intervention back then?
Some but very little. We were told a few hours after birth that they thought something was wrong and Lesley said she knew straight away.
What were you told by professionals about what your life would be like?
Very little. We kind of made it up as we went along. They told us it would be tough and challenging on occasions and that we would have many battles ahead.
What is your life actually like?
Different but wonderful at the same time. We expected to be going to Holland but arrived in France instead. But after the disappointment of going to the wrong place we realised that France was just as good. We never had any regrets and as a family just got on and coped with things.
What were some of the misconceptions?
Far too horrible to write but one I remember is that we had a “mongrel baby” and ought to give him up for adoption. It was something we never considered doing.
What are some of the challenges you’ve faced?
Plenty. Getting what we believed was the right educational provision right from nursery to 6th form was a never ending series of fights and arguments. Nobody wanted to do what we believed was right. Even now social services seem to be a never ending battle to get anything for Matt. Getting firms and people to accept I am his father and need to speak for him is far from simple.
What are you most proud of?
Matt and how he has turned out. He is a wonderful young man everything being considered and allowing for faults and medical issues. We all, the family, battled along and have come out the other side happy and smiling. We did the very best we could.
What would you like to share with parents with a new baby with Down syndrome about the future?
Keep going and never give up as it will be well worth it in the end. A Down syndrome child is very loving and affectionate and will reward you for all your hard work and effort. Fight for what you believe is right for you and your child and don’t be afraid to ask for help.
For World Down Syndrome Day 2018, I’ll be sharing 21 different stories to raise awareness! If you loved this story, you may love the others, you can find them here.
