Advice for parents, aimed at nurturing confident, happy children with a learning disability.
Acceptance
Few of us would say we were prepared for our babies to be born 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.
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.
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.
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.
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.
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.
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.”
Read Sharon Paley's guest article on Why Take the Chance: Letting your Child Take Risks here.
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.
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.
Read my tale of Respite and True Friends here.
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.
Thank you so much for sharing this with our blog hop. xox
ReplyDeleteThank you. Will make a concerted effort to try to link more often. H x
DeleteSaying hello from the hop :) it is a very good list and I agree with all your points. Especially the "be wary of your child becoming a project". I said those words before too- so true!
ReplyDeleteYes, it's easy to let the therapies take over and lose sight of the fact that our children are just that... our children. H x
DeleteThis is a fantastic post. And given me a bit of a talking to. I have fell into the trap of trying to help my son too much as opposed to just enjoying him - thank you x
ReplyDeleteIt's so easy to do isn't it Joy. I have to tell myself to let her 'just be' from time to time. H x
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