7 Things Parents Of Children With Learning Disabilities Wish You Knew

Learning Disability Week, devoted to raising awareness, is from 19 - 25 June this year.

13/06/2017 11:15

Shockingly, 70% of parents whose children have a learning disability have felt unwelcome in public when out with their child, almost two-thirds have missed a social engagement because of worries about how their child would be treated and 21% have been asked to leave public spaces. That’s according to research by the learning disability charity Mencap.

James Robinson, Mencap’s Policy and Strategic Lead for Children and Young, told HuffPost Parents: “Public attitudes towards learning disability have improved, but there is clearly still a long way to go. Parents shouldn’t have to feel the constant need to apologise or feel unwelcome. It’s okay to feel awkward, but we urge people take time to understand, engage and help end this isolation that so many parents are feeling.”

So, before you find yourself jumping to conclusions about that ‘badly behaved child’ or believing you’re ‘being tactful’ by looking away,  please read this...

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1. My child is an individual, not a label.

“Having Down’s Syndrome means that Seb needs extra support to learn things and achieve his fullest potential. But he is not ‘Down’s syndrome’. He is a child, an individual just like anyone and he has feelings, just like anyone else.

“He didn’t ask to have a learning disability and he deserves to be supported, not given obstacles from the assumptions that people make.”Caroline White, whose son Seb is nine. 

“I wish people would see past Rosie’s learning disability and see the beautiful, determined, funny little girl she is.

“Sometimes people do stare at her (especially when she is singing jingle bells in the spring, as loud as she can in the supermarket followed by raucous laughter!) but it doesn’t bother me anymore.

“I want people to look at her because I am so incredibly proud of my daughter. I simply smile at them and nine times out of 10 they will smile back or say hello to Rosie.” Tom Bachofner’s daughter Rosie is six and has Down’s syndrome.

2. We never forget your hurtful comments.

“A friend told me to leave my son either in my car or in their garden, rather than let him in their house. She told me she got really irritated and offended with him because he did not give eye contact. No eye contact is an autistic behaviour. She is no longer a friend.”  Ramya Kumar’s son Rishi is 10 and has autism and a related learning disability.

“I was once told I should have aborted Seb and that he was a weak link in the gene pool.” Caroline White, author of The Label: A Story for Families.

“We found out Rosie would be born with Down’s syndrome at the 20 week scan. At the 30 week scan the consultant casually slipped into conversation that we could terminate the pregnancy up to 36 plus weeks should we change our minds! We had spent the previous night looking at prams and discussing girl’s names. It was very hurtful to know our baby’s life seemed to have less worth because of her disability.” Tom Bachofner, dad to Rosie. 

3. But, like any proud parent, we love kindness and compliments.

“I was in a café with my sons. When we were leaving a woman gave me a letter. She wrote that some people struggle with ordinary children and to see us together enjoying each other and enjoying a meal together was so beautiful. She also said that I was an inspiration and that Harry’s big brother was special. We’d had a terrible week that week and this really lifted us.” Chantal Chaervey, mum to Ted, 16, and Harry, 14, who has severe brain damage.

“’You must be so proud of all she has achieved,’ is the nicest thing anyone has said. We are!

“Charli Mai attends Brownies  and swimming lessons. She stayed In mainstream school for four years. She had open heart surgery at three years old and she nearly didn’t make it but she was walking up and down the ward after a week. Charli is 11 now and she brings a smile to our face every single day.” Mark West,  dad to ‘feisty and independent’ Charli-Mai, who has Down’s syndrome.

4. The decision to have another child is not ‘brave’.

“Often, people say things without realising they are being hurtful - some people told me I was brave to have more children, as if another child with Down’s syndrome would be the worst thing in the world.” Caroline White, mum to nine-year-old Seb.

“Charli is so attentive to her baby sister Franki. She loves her to bits and is always making her laugh.” Sarah West, mum to Charli-Mai.

5. We know you might not know what to say.

“If I walk down the street with Charli, some people stare but the majority look to the ground. They don’t want to make that eye contact. It’s ignorance, really. That’s our little girl, and we’ll do anything to protect her.” Mark West, dad to Charli-Mai, 11, who has Down’s syndrome.

“The amount of kind comments I’ve had about Luke outweigh the negative ones completely. I would say to people not to be afraid to say ‘hello’ to people with a learning disability - you will often find them to be interesting, warm and funny people, just like anyone else!” Emma Nash, whose son Luke is 18 and has a learning disability and profound physical disabilities.

6. Parenting a child with learning disabilities is challenging. But my life is also enriched every day.

“Yes, sometimes life is harder and brings with it more challenges, sometimes we have to fight for funding or deal with prejudice - but the rewards are far, far bigger.  Seb has enriched our lives in ways I never could have imagined, I see the world differently because of Seb. He has taught me so much and I wouldn’t swap him for the world or change our journey. The only thing I would change is other people’s attitudes.” Caroline White.

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“Having Rosie has opened up our eyes to so much of the world we otherwise may not have seen. Her brothers are very protective of her and they have become more perceptive and intuitive to other children, especially those with additional needs or who may feel left out. We would never change Rosie; her Down’s syndrome is part of what makes her who she is and she is perfect.” Tom Bachofner, whose daughter Rosie is six and has Down’s syndrome.

“It can be hard work being Rishi’s carer 24/7. It is a constant battle with the system to protect him, to not only be his mum, but also be his teacher, his best friend and his advocate. It can get very lonely sometimes. But Rishi has given me the priceless gift of perspective and has made me a better and stronger person. He has taught me to appreciate and celebrate all the milestones he achieves, no matter how big or small they are!” Ramya Kumar’s son Rishi, 10, has autism and a related learning disability.

“Harry has the mental age of a two-year-old and is totally dependent on me for every aspect of his day-to day-to care. To those who have been judgmental and say horrid things, I say this, spend a day with these children and you will see a child who is grateful for every second they are blessed with. They only see love, kindness and happiness in everyone. As for me, I exist in a state of near poverty thanks to cutbacks but I am so rich, my life is so full. And I am amongst the luckiest people alive.” Chantal Chaervey, mum to Harry, 14, who has multiple life limiting conditions including severe brain damage, no immunity and epilepsy which means he can have between 2 and 12 seizures a day.

“Having children with special needs has hindered my chance of employment, despite a good degree. It is frustrating dealing with the relevant authorities paid to supposedly help too. But it has taught me so much about myself, my tenacity, tolerance, determination and patience.” Kerry Page, whose sons George, 20, and Sid, 18, both have Fragile X Syndrome - a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment.

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7. Take a moment to imagine what life is like for my child.

“My son David is eight and has a learning disability, autism and sensory processing disorder. David struggles with emotions and can become overwhelmed very easily. Imagine being in a room full of your worst fear, how does this make you feel? Can you focus? Can you remain calm? This is how his world is. He is not screaming and trying to run away because he wants a toy or because he is spoilt. It is because he has to deal with those feelings when he is in a busy place surrounded by people.

“David is the most amazing boy and tries so hard to achieve things. He has brought such a joy to our lives. David is not a bad child, David is David. He is an exceptional child who sees things differently and battles daily with the things that are hard for him.” Donna Elston, whose son is eight.

“My son is very bright and gentle. He experiences anxiety and exhaustion from just being around people for any length of time, which can make his world a very lonely place. He has sensory issues and can be hyper sensitive to noise, light and certain tastes. What I wish people realised is that we are a family just like everybody else - our challenges are just very different. 

 “Rishi spends every day in a world that makes fun of him, hurts him, judges him and tells him to be someone else. You might not want to understand his world but he is trying really hard every single day to understand yours. That is a text book definition for pure courage and resilience.” Ramya Kumar is mum to Rishi, 10, who has autism and a related learning disability.

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Amanda Batten, CEO at Contact a Family, a national charity for families with disabled children, told HuffPost Parents: “Families with disabled children across the UK deal with daily challenges many of us will never have to face - from negative public attitudes to disability to battling to get the right health, social and educational support in place for their child. Contact a Family’s own research has shown that negative attitudes toward disability coupled with a lack of services are the main barriers preventing families with disabled children leading ordinary lives.

“It’s important to recognise all the positives that come with being a family with a disabled child too. Despite the challenges, parents tell us that it’s often the smallest things that makes them feel proudest - the simplest sign, word, or smile from their child. Families with disabled children make a huge contribution to our community and economy in so many different ways we don’t recognise. And while there have been some steps towards improving the situation for families with disabled children there’s still a long way to go to ensure they have access to the understanding, support and services they need to allow them to lead the lives they want to live.”

Richard Lane, Head of Communications at disability charity Scope, said: “Life is still too tough for too many mums and dads of disabled children. Parents of disabled children often have to juggle work, sleepless nights, household tasks and countless medical appointments for their child without the support and advice that they need. On top of that, negative attitudes, a lack of understanding and hurtful comments from other people can make life even harder. It’s only by talking about these issues that we can begin to break down barriers and make sure that all parents feel supported.” 

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