The Paralympics finished and yesterday in London all the athletes were driven around London in front of huge crowds to allow us to recognise them for their brilliance and respect the awareness they have raised for people with disabilities. How they were cheered on by the spectators all anxious to capture the moment on photo. A true moment in history.
I had my own close up experience of what it’s like to be a mum of a special needs child and I was in awe of this woman.
I was on a British Airways flight returning from Verona. The weather outside was atrocious, looking out of the window it was easier to believe I was in London it was so grey and the rain so persistant.
Passengers were filing on and I still had two free seats beside me ‘I wonder if I’ll be lucky and they’ll stay empty?’ I mused knowing that it wouldn’t be so. I watched the last hassled family of five make their way directly towards me and the three free seats in front of me. Dad went over to the window seat, the youngest child was loud and crying. Mum became more flustered and glared at dad to help. The youngest was seated next to dad and mum then proceeded to direct 2nd child next to me.
I knew she had ‘Special Needs’ immediately as she needed directing to her seat and was wearing a bib to catch her constant dribble, to my surprise mum sat next to the youngest and Dad and the oldest son sat on the third seat on my row to look after his sister.
How could she let this child sit on her own when she clearly needed assistance? I wondered.
I stole glimpses of the pretty little girl beside me, her blonde tight curly hair framing her face and her cornflour eyes catching mine. She was curious to see me and I was curious to see her.
I smiled at her, noticed her brother watching and smiled at him too. He went back to his electronic game and I turned my gaze to the luggage handlers who were getting soaked loading our suitcases onto the conveyor belt.
The girl amused herself by walking her feet up the chair in front of her and walking them down again occasionally knocking my foot on her descent. It wasn’t a violent movement, just repetitive.
Her brother would place his hand on her legs softly to calm her, gently pushing her feet to the floor and keeping her still before returning to his game but sooner or later she’d go back to her chosen pastime.
As I gazed out of the window I felt a warm little hand clutch mine, it made me smile. I turned to see her looking at me. It was natural to stroke her hand and lower arm and keep hold of her hand as long as she wanted.
Later in the flight I was looking out at the clouds over the Alps and I felt a lick on my hand!
Her brother stepped in quickly and wiped my hand apologising.
‘Please don’t worry,’ I assured him. ‘It’s no problem.’ I suspect it was my bright red nails that had caught her eye and I was amused by her action. I was more and more intrigued by this little girl.
It wasn’t until half way into the flight that mum swapped seats with her son. We struck up conversation and I discoverd that her youngest daughter also had brain damage like her sister but not as severe.
So that was why she sat in front! She had two little girls both with special educational needs.
We started talking and I learnt that Amy (name changed) was 7 that she’d been a happy baby growing well until, during a bathtime at 9 months old she went blue in the face and started having her first seizure. Mum was understandably petrified and screamed the house down. They rushed the baby to the hospital and there began a long, long search to try and discover what was wrong and how to correct it. Sadly they didn’t find the correct medication immediately and so with each following seizure Amy suffered more brain damage.
When her little sister was born a few years later and slightly earlier started the same seizures, the parents battled immediately to avoid the rigmarole of trying each drug and go straight to the one that worked. It was a fight they won and positive as her younger sister, can talk and frequents mainstream school with an assistant to help her.
Mum told me they had taken the kids on the ferry across Lake Garda during their stay, she had taken Amy outside on deck as she loved the feel of the wind in her hair, they sat down and Amy ,so pleased, let out noises, they were quite loud as she was loving the sensation. Mum was horrified when a non English speaking lady came over, made signs by putting her hands over her ears that Amy’s noise was too loud, She gabbled on and pointed to mum and then child obviously saying ‘Tell your child to be quiet!’
Mum tried to explain in pigeon English, ‘She doesn’t understand.’ baffled as to why the woman couldn’t see Amy had complex physical and learning disabilities. It was obvious that mum had been upset by this intrusion on a large and open ferry and at the lack of tolerance from an older adult.
I tried to cheer mum up by saying there are some people out there who don’t like ANY children at all and have absolutely no tolerance. I referred to the woman as an old bag.
I learnt many things on that short flight and I recognised just how trying it is to look after a child with both physical and cognitive complex additional needs. Because of the story of the old bag on the ferry I decided I wanted to share what I gained from mum and make people aware of the love and commitment required for such special children.
- Amy doesn’t always sleep at night, in fact the night before departure she’d been up all night. Mum had to stay up too as she would wander around the rented villa. Mum was exhausted but still had a smile on her face.
- Mum pulled out a large flask containing a pureed meal as Amy doesn’t chew properly, every family outing needs careful preparation to make sure they have something for Amy to eat.
- Amy is still in nappies and most likely always will be as potty training is not a possibility.
- Amy dribbles constantly. There are drugs to help with this but the medication she is on is so strong that her mum decided she’d prefer not to introduce others. I understand this decision.
- Amy attends a school where she enjoys many different activities. She loves music, she loves the trampoline, she loves to hold a plastic coated wire in her hand and twiddle it between her finger and thumb. Another of her toys was a long string of wooden beads which she would swing round and round in front of her face but never catching herself. Mum and I were ducking on occasion though
- As Amy grows she is getting heavier and faster making mum’s life that little bit trickier when it comes to parenting her.
I take my hat off to these parents. Both work, mum full time and dad three days a week, the oldest son goes into secondary school now and has his own after school activities and life to lead. There is no doubt that their family life holds many more obstacles compared to mine but Amy was a true sweetheart, I left a little piece of my heart on that BA flight.
If you’d like to find out more please read our monthly BritMums Special Needs round-up written by bloggers with children of ranging diagnosis, whatever you do don’t ever become an old bag.