Ten tips for parents with a child with a learning disability

21 February 2013

Hayley Goleniowska, author of award-winning blog DownsSideUp.com and mother of Natty, who has Down's Syndrome, offers tips to parents of a child with a learning disability.

1. Acceptance

No-one signs up for a child with a learning disability and for many there will be a time of readjustment, even mourning for the baby you thought you were expecting. But it’s important to learn to accept your child for who they are and not try to make them someone or something they are not. That leads to frustrated parents and unhappy children. There will be challenges but you will learn and grow together in dealing with them.

I had to give myself a talking to when Natty was tiny as I felt she was turning into a ‘project’, simply the target of lots of SALT and physio activities. Of course, she is our daughter and sister first and foremost. Success at school is not the be all and end all in life and in fact having Natty in our lives has made us re-evaluate our priorities: friendship, food, music, travel, family, enjoying the moment. Time spent at home with a loving family will influence your child the most.

Enjoy your child, show them they are loved just as they are, have fun, sing, be silly. Praise their successes, however small the steps and set achievable, realistic goals that will stretch and encourage development. Natty was able to access a Portage service at pre-school age, which helped us enormously with this.

2. Share, be open, talk

Easier said than done for many of course. I am a natural chatterbox and I found talking through concerns with neighbours, friends and other parents not only eased my mind, but helped them understand Natty better as well as any hurdles we were facing.

I was afraid people would stare when Natty was born. They do look, its only human nature to focus on differences, but it isn’t meant with malice. I draw them in and engage them in friendly conversation. That way they always leave more enlightened and knowlegable about Down’s Syndrome, and thinking what a lovely family we were, not a bunch of touchy, angry people who shooed them of for looking.

3. A positive outlook

This will do your child the world of good. Don’t moan about services providers or your child’s appointments, gripes with doctors or financial worries in front of them. They don’t want to feel like an inconvenience or source of stress for you.

This is crucial for self-esteem and confidence I believe. Save the niggles for an online chat or phone call when your child is asleep.

4. Be organised

Keep a file of appointments as there might seem to be an endless stream of them at times. Copy any research you have done or questions you have as you go along too. As the greatest expert in your child’s life, professionals will often look to you for cues, so don’t be afraid to speak your mind. Oh, and take your file with you.

Be professional yourself when asking for help for your child. You will get people onside more if you work with them, even though you may have to be firm in your requests at times. This applies during the statementing process more than ever.

I always used to dress for medical appointments like a job interview. Sounds silly (and it shouldn’t be necessary) but I wanted to be taken seriously.

5. Individual Differences

Research and find out what works for best for your child, what their learning styles and preferences are, what triggers their anxieties, what motivates them.

Natty loves working with song, or dance movements to help her learn. She loves cuddles and tickles as a reward, or an appropriately chosen iPad game. Work together with teachers and TAs to find out what works best at home and at school. Some children are kinesthetic (movement), visual or auditory learners.

Visual timetables are often useful, as is Makaton, symbols, emotions puppets and so on. Natty adores drawing shapes in trays of lentils or pasta for example.

No school is perfect and you can make up for their weak areas at home. I flexi-school, which wouldn’t be for every one but works well for us. We simply have one day a week at home together, working in Natty’s prefered way.

Work with school, not against them using a shared communication journal. Offer time and resource making if at all possible.

6. Life Skills

You can never start to teach life skills too early. I think I started earlier with Natty than her older sister because it was at the forefront of my mind that this was vital for her independence. If your child can learn to have a go, ask for help, brush off making mistakes, they will have a solid grounding in the emotional skills they need for life.

We worked on dressing, washing, sorting laundry, making beds, putting away clean cutlery, watering plants, feeding chickens, posting letters, paying for groceries and so on, all from a very young age. It also makes your child feel included and provides great distraction tasks when they might otherwise have a meltdown.

I include in life skills, encouraging healthy eating and a love of sports or outdoor pursuits. Sleeping well is also an important habit to develop young as is an understanding of cleanliness and toiletting. Make it fun, buy colourful/ electric toothbrushes and flannels, bath bombs, a variety of smells. We used to use a visual timetable to talk us throught he washing/ toiletting routine, and had many a silly song to accompany that.

7. Risk Taking

It’s easy to over-protect and molly coddle but risk taking is part of what makes us human. Allow your child to make choices, take very calculated risks, try new friendships, get dirty, eat sand. I bet you did all that when you were young.

When Natty was tiny she sustained a little bump to her head when trying to pull herself up to standing against a brick wall. The doctor I nervously took her to see chucked kindly, “This is what I like to see,” he said “a child having a go and getting into scrapes like any other.”

8. Social skills

Making friendships and forging relationships are another part of risk taking and what really make life worth living. Give your child a set of skills they need to make friends. You could try teaching them a set phrase, such as “Can I be your friend?” that they can use in the playground. Take photos of them playing with friends and tell them what a gentle and kind friend they are.

Don’t be afraid to invite classmates over for tea, and accept every birthday party invitation your child gets. These things matter.

9. Nurture Yourself

Really this should be at the top of the list. Without a healthy, happy main carer, who will cope with your child? Fit your own oxygen mask before those of others. Take time out, even if it is only 10 minutes a day to walk round the block while a friend or partner watches the children. Chat on the phone to an old friend and don’t talk about the children. Buy yourself a new lipstick. Eat a little healthier. Get a trusted friend or family member to watch the chidren while you get some sleep, look into Direct Payments or local carers support networks. Do not feel guilty when doing this (which in itself takes time and practice).

I ignored this advice, felt guilty about breaks and carried on until the point when I was simply stopped in my tracks by suspected MS. It was in fact, simply stress and exhaustion.

10. Most of all, enjoy your child and the jouney of discovery they will lead you on

They will prove to be your best teacher ever.

Read more of Natty’s journey at DownsSideUp.com