When my partner, Paul, and I adopted identical twins, Levi and Lucas, we were over the moon. They were two years old and, like parents everywhere, we looked forward to giving them a loving, caring home. We were even happier knowing that we saved our boys from being separated – we could never have done that to twins.
What we did not know was that our children were severely disabled. The boys have severe autism, global developmental delay, uncontrollable epilepsy, severe learning disabilities and behavioural problems. As a result, the twins need round the clock care. Their epilepsy is so bad they have been taken to the hospital in the middle of the night and ventilated in intensive care.
Life hasn’t been easy. Since becoming parents, we’ve had to learn everything – all about the conditions, the medical appointments, how to manage and how to deal with it. We’ve both had to give up work.
However, what we share is our unconditional love for the twins. We have two boys that we care so much for and want them to have the best of everything. We’ve adapted our house, and our lives. We are committed to them and we are all they have.
Some people have a fear of disability. Some of our friends talk about getting tests done to see if their baby is disabled and it breaks our hearts. Because of the risk of disability, last year in England and Wales, almost 3,000 abortions took place. Sadly, lots of children waiting to be adopted are disabled. At the last count, almost half of children waiting for a family placement had “an impairment or some form of special need”, and kids with learning disabilities are the most difficult to place.
Yet our experience of life with Levi and Lucas is one where the exhaustion and despair is inseparable from the joy and love. Children with disabilities share the same sense of fun as the rest of us. Although they often have to struggle with pain and extreme distress they also light up the lives of others, just as our boys do for us. People with disabilities are not second class citizens. They are full members of our community and enrich all our lives.
It will never be easy but quality family life is vital. But how do you get that when you have little money and life is so demanding? We don’t get much sleep and as caregivers we get exhausted. If the right help is in place, life is a lot more manageable. We appreciate living in a country where we get help but support for many people can be poor – it was for us. The boys weren’t talking, Levi wasn’t walking and yet there was a lack of visits and contact from therapists and other professionals.
When parents are full time carers and unable to work, it can plunge families into poverty, and the special equipment and respite care which can help ease the pressure costs a fortune. There is special equipment which would mean that the boys could get out into the community, like other kids. But, as full time parents relying on Carer’s Allowance, we just couldn’t afford it. Thankfully, there are charities which provide support of all kinds. In our case, the children’s disability charity, Action For Kids, raised £15,000 and bought the boys two specialist bikes which will last them well into adulthood.
Going on a family bike ride now is amazing; before we’d have holidays and be unable to do anything, stuck inside as so many playgrounds aren’t adapted properly. Now we try to go out on the bikes every weekend for hours at a time. The boys love being outside. They are stimulated by sensory things and it calms them when they are out with the wind in their hair.
We get a lot of joy back from Levi and Lucas. The tiny little things they achieve are so massive. They love bubbles, and playing with bouncy balls, we’ve got through hundreds of them! Just to see them smile makes us so happy and life that bit easier. We will always fight for everything for the boys. After all, why should they miss out on opportunities other children have?Reuse content