Monday, September 20, 2021

Snipping the apron strings…bit by bit

 Snipping the apron strings…bit by bit

 ….it’s got to be done so my advice would be to start early.  When Heidi was very young we taught her how to queue (and discouraged kind people letting her jump the queue as that’s not going to happen as she gets older), how to find the toilets, how to ask for things from shop workers.  We would allow her to try these things accompanied at first but we gradually stood back and let her do things.

If people asked one of us what she wanted, we just told Heidi to answer and stood further back.  This is an ongoing problem but more and more people are realizing that she can speak for herself (even though she is the size of a 10 year old!)

This might be hard at first but remember the long game – independence.  This will look different for all our children but gentle snipping of the strings will help them feel more independent and prepared to take on the world!

We always encouraged age-appropriate behaviour, clothes, bags and lunch boxes.  If we want her to be treated “normally” then we don’t want her sticking out.  I admit this is not easy when she wants trendy clothes and high heels – still hard when she is 26 and a size 3 shoe!  (Especially when my sewing skills stretch to sewing on a button – thankfully Suzie’s are a lot better)

I was totally fed up of watching Disney films and was delighted to gradually allow Heidi to go to the cinema with Suzie, who still enjoyed them.  The first time I watched another film at the same time, so they knew they could find me easily.  The next time I sat in a nearby coffee shop and then eventually I let them go on the bus together to town.   (I was very adept at hiding in bushes watching them cross the road and get on the bus).  Suzie was paid for her kindness.  Win all round!

I know that it’s hard to allow our youngsters their freedom and for lots it’s much harder than it was for me and Heidi, but there are solutions.  You could use your young person’s DLA or PIP money to pay a friend to take them.  Yes, it’s not independence but it’s preparing them for the days when you aren’t able to do it.  The sibling or friend can teach correct behaviour on the bus and how to look out for shops or pubs that show you are nearly at the destination.  Buying the tickets at the cinema might not be something your child could do (Heidi certainly couldn’t at first) but having watched Suzie she learnt what to do. 

(And if you think you can’t afford it buy a CEA card and the carer gets in free!)

We then moved on to the biggie – going shopping with Suzie and school friends.  The easy option would be to say “no” and just take her myself, but shopping with Heidi is a tiring business so I was more than happy to pass the buck on this one.  Though of course the first few times saw me follow at a distance and I was often seen hiding in doorways and having to explain myself to security guards or other customers.

Before the first trip Heidi and I went to a few of her favourite shops and cafes.  I explained that she would soon be going shopping without an adult and if she had any problems could she come to them.  Each one was delighted to help.  She never used their services but remains good friends with those shopkeepers (with most of the shopkeepers and café owners in town actually.)

After a few times of following them around at a distance, I then said I would be in a particular café and they could find me if they needed me.

They never did, and things that I had worried about were sorted out by themselves or occasionally asking people for help. 

Give it a try, you won’t know how well they can manage unless you give them the opportunity.  Use friends/family to help so that they are not completely dependent on you; this will help them in the long run.  I have heard lots of times “I never thought they could do it” or “they do so much more with other people than with me”.

All of these small but important steps prepare everyone for the day when we are no longer around.

Monday, September 13, 2021

Hannah and independent living!

I have known Hannah and mum Jo for about 17 years,  Jo runs PROUD a support group for families with children who have Down Syndrome in Walsall.  Hannah has 2 younger sisters and Jo has fought for every possible provision for Hannah over her life. 

But its true to say that independent living had not been in Jo's mind for Hannah. She always told me that she hoped Hannah's sisters would care for Hannah.  Hannah has cerebral palsy and juvenile arthritis (she often needs a wheelchair) and uses makaton and pecs to communicate as she is pre-verbal. 

So this photo of Hannah leaving home show a 360 degree turnaround in Jo's thinking! 

Hannah has just moved into a beautiful home with 5 other young people and is now attending college and learning life skills. 

She will have 24/7 support and already Jo has received regular messages from the staff showing Hannah having a great time!

Her mum Jo and I hope that seeing Hannah's story encourages other families to make this step.

Have fun Hannah!

Monday, September 6, 2021

To travel train or not to travel train?


At first the council were unwilling to provide transport to and from school so tiger mum came into action and after a stroppy email a taxi was miraculously provided.  To save the few remnants of my sanity Heidi joined the after school homework club 3 afternoons a week and the taxi was provided for that.

At about year 9 I suggested to school that she should be travel trained to and from school by bus.  The travel trainer visited us to get to know Heidi and explain to me how training would work.  We are lucky that the bus stop is right outside the house, but the trainer taught Heidi how to keep a look out for landmarks so she knew that she was nearly at school or home.  The trainer also taught Heidi how to show her bus pass, how to behave on the bus and showing the safest (though not nearest) bus stop for return journey.  Heidi loved this independence but even after being signed off it didn’t stop me peeking from behind hedges to make sure she was safe!

I know of others who have tried travel training and may not pass to travel alone but have been passed to travel with a buddy; this is still great independence.  The young person can travel with the buddy to places that they want to go to rather than just where mum/dad want to take them.

I have heard parents’ concerns about “stranger danger” incidents on buses and independent travelling – these are incredibly rare and teaching Heidi how to deal with them seemed safer to me than shielding her completely and not allowing her to enjoy some freedom, like her siblings and her friends.

(Though apologies to the lady who kindly told Heidi that her skirt was caught up at the back and she was showing her knickers to the world.  Heidi retorted with a loud “I don’t know you.” The lady explained that she knew me and that she was only trying to help.  Heidi sorted her skirt out and continued on her way but was not convinced that the lady was only helping!)

A repeated fear that I hear is that our youngsters could find themselves stranded without any idea how to get home.  Allowing them to travel train (to their ability) means that they would at least know the basics if they were stranded.  It might mean that you follow them at a distance a few times to allay your fears but let them try it – they will probably surprise you.

I have never had to rescue Heidi from the opposite side of the city, because she got on the number 10 to Longford rather than the number 10 to Canley – hang your heads in shame older brothers!



  Flying the nest During 2015 Heidi and I started looking for a supported living home/flat that she could move to. We were shown round a g...