Divisive issue or personal choice!

Sadly the choice of mainstream or special school is a tinder box in the Down Syndrome community, with as many opinions as there are schools.  I had volunteered in special schools and looked round our local special schools, and would quite happily have sent Heidi to them.  

However, the school the boys attended were so keen for her to join them, that we thought we would give it a go! 

We decided we would take a term at a time and reassess if necessary.  The school, especially her teaching assistant Debbie followed our lead and didn’t let Heidi off or excuse her behaviour. She repeated Reception and year 2 and so at age 13 she bade a tearful goodbye to Debbie and moved onto a mainstream secondary school. 

Of course, Heidi never made up the gap between her and her peers but school was very good at adapting the work and including her in all activities.  

From the age of 5 Heidi had wanted to be a hairdresser – the mere mention of it, had all but bald men, running a mile! 

Thankfully the school were keen for her to do a day release BTEC course in hair and beauty.  She loved this experience and the school provided a 1:1 assistant to go with her to the college for years 10 and 11.

At age 18 she left school and college with a few qualifications but more importantly had shown school communities that having Down syndrome is not something to be scared of and that different is ok! 

I still receive comments from parents saying how much their children benefitted from Heidi being in their class.

Sadly though, Joe Bloggs from class 10X has lost his chance to fulfil their shared dream of marriage!

The Bombshell

 

26 years ago, we entered the hospital ward, excited soon to be meeting our third child.  Dan (3) and Tim (18 months) were being cared for by friends.   We had refused the blood test and only had the routine 12 week scan, so the joy of our first daughter’s arrival was marred for me when I saw her tell tale almond shaped eyes.  I voiced my concern to Steve who replied that “she just has squashed new baby face!”

After a while a senior midwife confirmed my fears that she thought Heidi had Down Syndrome.  We really struggled with this and were very upset and angry. 

I spent hours looking to the future and worrying that I would never have girlie outings or watch Heidi get married!  How daft.

But even then, I vowed that she would be as independent as possible and we would do all we could to enable that.

We stressed and fretted about how Heidi would fit into family life and how it would affect the boys and whether their lives would suffer from the unwanted extra chromosome.

Independence was the last thing on our minds for the next few months as Heidi struggled to get through each 24 hours. Thankfully after her AVSD heart repair she came home from hospital but the local hospital became our regular unwelcome second home.

Suzie came along just before Heidi was 2 (yes I had a nearly 5 year old, a 3.5 year old and Heidi nearly 2) I distinctly remember Steve bringing the children to meet their new baby sister, and thinking that I had been totally mad to have another baby so soon. However, Suzie slotted into family life very well and coped with being poked and prodded by her enthusiastic older sister!  Their bond was so obvious from day one, the roles changing as Suzie overtook Heidi and learnt things with ease.  Her joy in Heidi’s achievements were over the top and sounded patronizing but they weren’t, she just knew that her “big little sister” needed that extra time and help.

We decided early on that Heidi would be treated the same as the others, according to her understanding. She would not be allowed to use Down Syndrome as an excuse for bad behaviour or for special treatment.  The other children soon noticed if we failed with this - I remember 4 year old Dan telling me that he would have been punished if he had been the perpetrator of Heidi’s latest misdemeanour! 

I knew families where elderly parents still cared for their middle aged children and was determined that Heidi would leave the nest as early as she could – my maternal gene is slightly lacking!

 

Independent living - Why? When? How?

 

Independent living - Why?  When? How?

I am starting with the hardest question, but I think the most important: Why?

It’s the scenario that none of us wants to think about - our loved child surviving us - so we put it off.  I have heard too many scary stories, so this is my main reason for the page.

Mildred (not DS) lived with her elderly parents in the same home for all of her life.  Her parents died suddenly within a few weeks of each other.  Unbeknown to Mildred’s sibling they had left the family home to her, on the condition that she looked after Mildred!

Mildred and her sibling had never really got on.  After a few months the arrangement broke down.  Mildred had lost her parents and the only home she had ever known.  Only her name is made up.

I heard this week of an unmarried sibling being expected to look after her sibling with DS.  She has given up her career because he needs so much care. 

We have all seen elderly parents walking along with their middle-aged adult with DS and wondered how that person will cope when the inevitable happens.

I have picked examples of difficult situations and I am sure that there are lots of siblings who have willingly taken on the full time care of their disabled sibling – good on them!

We know that Heidi’s siblings will look out for her. Even now if she has a problem she will go to a sibling, especially if it’s too technical for us boomers.  And for years she has gone to Suzie for fashion advice – can’t think why!   But we didn’t want them to be forced to look after her when we were gone.

 

This is a very sombre start to a blog but hopefully it will help you to plan ahead! 

I promise it will get happier – it’s about Heidi so it’s got to hasn’t it?