My Take…Part One

After a recent episode on Shortland Street, a New Zealand TV programme, where some very negative views were expressed about Down Syndrome, my phone was red hot for weeks and emails kept filling my inbox, so I thought maybe it was time for me to write a very brief summary on Down Syndrome.  (For the record, I have never watched Shortland Street.)

Down Syndrome is not an illness or a disease.
Down Syndrome is caused by the presence of an extra chromosome.

There are varying degrees of intellectual disability associated with Down Syndrome; some mild, some severe.

Many people assume that Down Syndrome folk are all alike; this is not the case.
Each have their own personalities, strengths and weaknesses; the same as all other children.
Some have health issues, some mild, some severe; the same as all other children.
Some speak clearly, some will speak with difficulty and some are nonverbal with one or two word phrases, often spoken out of context but as long as their family or caregivers understand them, there is no issue.

Some have a limited ability to comprehend the world around them and require 24/7 care, however this doesn’t interfere with their love of life and there are some who can work/live in an assisted environment.

Many folk believe nonverbal Down Syndrome adults weren’t given opportunities to engage and learn language skills when they were young.  

This couldn’t be further from the truth and this misinformation has put many families under horrendous stress. 
Sadly there are many textbook cowboys who have and are still devastating folk with this misinformation.
Being at the coalface, and being involved with hundreds of families throughout the years has given me the licence to speak on this subject.   

Nonverbal communication includes gestures, facial expressions, and body language; I know this for a fact as my Down Syndrome daughter is nonverbal and we have absolutely no issues with understanding her needs.

I remember when she was a wee toddler, I allowed a Psychologist into my home. 
She came to assess her which was common practice in the late 1970’s.
I was about twenty-four, the same age as this woman.
Puffing herself up like a rooster, she informed me this was her first job after receiving her Degree.
I thought she wanted me to bow at her feet.
She proceeded to lay out some educational toys on the lounge floor & then fired instructions at my daughter as to what she wanted her to do.
She became annoyed as Belle didn’t understand what she meant, and for that matter nor did I!

This young expert was going by text book theories and was unaware that each child was different; she had lumped them all into one category.
When I saw my daughter become distressed, I reached over to her and this little upstart smacked my hand.
Yep….I picked up her bag of gizmos and told her to leave my house and not come back.  She huffed and puffed and left.
I wasn’t very assertive back in those days so I was rather proud of myself.
These days I often wonder how many lives she has ruined with her self righteous attitude.
And while on the subject of professionals.

Ensure you have a Doctor you can trust.
You know your child best so a good working relationship is needed.

If you disapprove of the way your Doctor treats you and your child, find a new Doctor, one who is kindhearted.
Even in our ‘modern enlightened world’ there are still some Doctors who aren’t very tolerant of our gorgeous kids.

Never allow yourself to be downtrodden, your Down Syndrome child/adult is depending on your strength of character.  

If you feel worn out, contact me and I will ring around and find a Doctor for you.  I don’t care if you live in the Northern Hemisphere; I will find the best care for you and your child as I have acted as a support person/advocate for many over the past forty years. Confidentiality guaranteed.

My younger children, who are now adults, love their big sister dearly and vice versa.   
Their patience, kindness, compassion and love for her brings tears to my eyes.
I know I have raised three fine human beings.
As for me my life has been greatly enriched by having Belle as my daughter.
We start and end every day with a kiss and a hug.
I am so grateful she came into my life.

Always remember, our Down Syndrome family members deserve to live in an environment where they are loved and feel safe and it is up to us to make sure this happens.
Furthermore there will always be some folk who strongly believe our Down Syndrome children have no right to life; this we have to accept but opportunities will present themselves from time to time where we can educate the ill-informed.

                                             Peace and love always.