“Never let the grass grow under your feet” is something I heard my parents say often as I grew up.
Now it is something I try to live out in my daughter’s life.
Esther has cerebral palsy (CP), and often it requires me to be a “pushy parent” (an advocate) on her behalf.
I am not encouraging the type of behaviour one reads about in the news: parents so proud of their offspring that they resort to physical violence if theirs doesn’t come out on top.
I am simply speaking as the type of parent I believe to be the most worthy of displaying “pushy” behaviour: the parent of children with special needs.
I am not the example, and these are not all success stories.
But to these children, being “pushy” is not just giving them good opportunities in life, it is essential for life.
Such children often cannot fight for themselves, yet they deserve every chance for success.
Sometimes we need to push the medical professionals to do all they can (or, as we discovered, things they have never done before).
I am not medical, however, and do not know readers’ individual situations, so just a short point: Never give up!
On to more practical points: firstly, I insist on Esther being included in everything that is happening.
When I am working around the house, I push her wheelchair around with me, turning her to see whatever I am doing.
Find out what local support groups are available for your child’s particular diagnosis, and sign them up for specialised sports groups if possible.
I am always on the look-out for things to make Esther’s life better.
Whenever I am on my smartphone, (as well as checking Facebook and reading jokes for comic relief) I search CP and special needs websites for things that could benefit Esther.
I read of the Upsee long before it was available, looked into funding, eventually deciding to purchase it ourselves.
My husband even made Esther something resembling the Scooot (using a skateboard, fabric, and elastic straps), before we had heard Firefly was even working on it!
Checking out library books is also a great idea, and we found some help with Esther’s sleep issues this way.
Prior to medical appointments, prepare a list of things to ask, issues that concern you, and ideas you would like to try with therapists, such as a new piece of equipment. (A gait trainer is the latest we are going to try at therapy – watch this space!)
And if something doesn’t work, adjust to fit your child’s needs.
When at appointments, make sure you can accurately describe their condition, symptoms, and abilities.
It’s a great idea to video your child and show they physiotherapist what they can do at home, or play a recording of them in a chatty mood for their Speech Therapist.
Esther is often too overwhelmed at therapy to talk – unsurprising in a room with as many as 4 or 5 therapists! On such occasions, we must show our children off.
For someone like Esther with weak muscle tone, it is imperative that she do her stretches and exercises every day, or she loses that ability.
Make it as fun as possible – sing while you do them, or make up rhymes or rhythms. Do the exercises with the other children too – our baby loves doing the same stretches as Esther (and, believe me, it does Mummy a world of good if I can manage it occasionally!).
If you have a babysitter, make sure they have a list of all the exercises your child must do as well.
It has been said many times, but as parents, we do need to be the voice of our children that cannot speak for themselves.
My younger son, who has no handicaps, has no difficulty letting his needs (and wants) be heard, yet when he bit Esther’s finger, she was unable to tell the story like the boys in the famous “Charlie bit me” video.
As parents, let’s not let our special needs children down – we must be their eyes, ears, voice, hands, and feet.
Let’s help them to really live their lives.
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