Starting the journey as a parent is one of the most poignant and emotional moments in a person’s life. Raising a disabled child, each day is a learning curve, and the power of community cannot be ignored.
Children are a wonderful addition to any family, watching your ‘mini me’ develop, flourish and grow into their own person. For families raising disabled children, there is no parenting book and it can be, at times, an isolating experience – but you are not alone.
DIAGNOSIS
Celebrating the birth of Vaara, Dee Patel and her husband’s rainbow baby after the loss of their first daughter Amaari, the couple were overjoyed to welcome a new baby girl into the family.
At six months old, Vaara began to regress and forget how to roll and do other milestone movements for a child her age. Before long, Vaara was admitted to A&E where doctors discovered she had a rare form of childhood epilepsy called infantile spasms, which comes with further complications.
“We were so worried and confused, so isolated and alone, so upset and angry that this was happening to us,” says Dee.
Whilst pregnant with triplets, Charlotte Hawkins went into early labour at 26-weeks requiring an emergency C-section. Shortly after delivery, Charlotte’s son Theodore required resuscitation and experienced a brain bleed and brain damage. His brother, Raphael also had a bleed on his brain.
“It was a bitter sweet moment because I had my babies but I didn’t feel like celebrating because they could be taken away from me,” explains Charlotte. “You go into survival mode.”
Both boys now live with cerebral palsy, with Theodore requiring more support.
For some families, however, a diagnosis can come later on in a child’s life. Darren Scott and his wife Amanda learned that their daughter Sophia has a progressive genetic disorder called Sanfilippo Syndrome, which is, unfortunately, a terminal condition causing behavioural issues, mobility issues and can be related to a childhood form of dementia.
Darren admits: “It has taken absolute years for this to sink in and it has just broken us, we will never be the same again. It is hard, we do watch Sophia decline regularly. She has lost a lot of skills over the last two years, and there are now some physical issues as well.
“It has been a massive mental challenge but we do try to be positive and give Sophia the best life we possibly can.”
In a time of joy, some families may experience heartache and feel isolated from other new parents.
COMMUNITY
“You do feel quite alone, because they are babies: friends and family don’t really see the impact,” explains Charlotte. “It’s not until they actually start growing you see the impact of the disabilities, because when they’re babies you can’t really tell.”
After reaching out to SmallSteps, a charity working to provide disabled children group sessions with their
parents or carers to build on physical skills, Dee and Charlotte reaped the rewards of not only seeing their children progress but meeting others in a similar situation.
“We feel indebted to Small Steps,” enthuses Dee. “You can be yourself there, surrounded by parents who are facing similar issues and problems.
“You can talk, share experiences, and information that otherwise you may not have known.”
Charlotte agrees: “You have a support network of likeminded parents. As a parent you can be yourself. If you want to have a cry or have a moan or ask a question, you don’t feel like you are being judged.”
Darren, who has now become an expert in the field of Sanfilippo attending medical conferences across the world, has felt the support has been minimal for this condition.
Even so, Darren continually works to raise money, and has discovered a community pushing him forward with Sophia’s journey shared online.
“It’s the support that means more to us than the money. We know it is physical to get out and do this, but mentally, it is nice to read that we’re not on our own.
“I don’t think people understand how much reaching out can help a family like us. People will never know just how much popping around for a coffee is appreciated.”
From running two Highland festivals in Sophia’s name, black tie events, to marathons, Darren has found support and solace when fundraising for charities such as Glasgow Children’s Hospital and MPS Society, where Darren and his wife have managed to meet other families whose child lives with Sanfilippo and work to raise awareness of the condition.
ACHIEVE
Despite the hurdles that come with raising a disabled child, there is no denying the love and utter joy a child can bring.
Darren enthuses: “It’s Sophia that keeps us going, we don’t keep her going. Sophia is an absolute bubble of love and energy; she has the biggest belly laugh and the brightest eyes. She is just full of love and affection.”
Charlotte agrees, watching Theodore learn to sign and use the bathroom, she enthuses: “He is so proud of his achievements. Sometimes it does make us sob because we just never thought it would happen.” And Raphael is flourishing, too, as he is now keeping up in mainstream school, making friends and is reading and writing.
Through the highs and lows, if you are adapting to a new diagnosis, Dee advises: “Be kind to yourself as you are doing an amazing job. You are your child’s world so when things get tough, remember that.”
Don’t be afraid to ask for help, and most importantly, take time to look after yourself. Darren adds: “Take some time for yourself; you’ve got to try and have some balance. Ultimately, that little person is looking at you and they’re not looking at anyone else. They need to see you smile.”
Further support and advice is available from Small Steps, Scope , Glasgow Children’s Hospital and MPS.
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