Summer Holiday Solutions for SEN Families

For most of us that blank sheet of school Summer break time leads to a mixture of relief that our children are ours exclusively for the next few weeks, excitement at all the memory-making to be done, and not a little anxiety as to how we are going to fill each day, survive the meltdowns or find enough energy, patience and/or affordable childcare.  

I certainly don't have all the answers, but here are a few ideas you might like to try.

Summer holiday solutions for SEN families

Life with Mosaic Down's Syndrome? Self-advocate Claire Minett Explains

I was fortunate enough to meet determined advocate Claire Minett in person last year at the glitzy National Diversity Awards hosted in Liverpool Cathedral. I was aware of her work long before that and she has been a role model for our family for quite some time. Claire lives independently and has educated us greatly about Mosaic Down's syndrome. I feel lucky to call her a friend. So we were enormously excited when Claire agreed to be interviewed for our We Have Down's Syndrome section.

Claire MInett tells us about Mosaic Down's syndrome

What is your typical day like?

My typical day can vary from attending workshops at the local mental health organisation to trying more excerise and a bit of shopping here and there which I don't particularly like.

Do you have any hobbies and how do you relax?

I like going out with my friends and I like to sing Karaoke. I like to watch TV and I watch quite a lot of sitcoms and soaps. I love to watch films too. I go swimming with a friend and doing relaxation classes once a week helps me. I can stress quite a bit over things so I took up knitting and it has helped my depression too. 

I know you have an unusual pet, can you tell us about him?

Claire with her companion, Cat 

Cat is not really unusual, he is just a chocolate brown Syrian hamster. He is my lickle boy and I love him beacause he helps me calm down at the end of the day...

Can you tell our readers what Mosaic Down's syndrome means?

In a person with Down's syndrome (Trisomy 21) all the cells are affected but in someone with MDS not all the cells are affected, hence the word mosaic. It affects me with my comprehension. What is simple to you might be twice as hard for me to learn. I also have an emotional disorder where I can experience a lots of different emotions daily.

You were really entertaining and educational in the BBC 3 short film Things People with Down's Syndrome are Tired of Hearing (watch below). What one thing would you love people to know about living with Down's syndrome Claire?

Down's syndrome is not scary. Don't be afraid to ask. We bring more to the world in a way that others can't.

We met at the National Diversity Awards last year (what an amazing night) but you've done lots of other important advocacy work. What are the biggest projects you've been invoved in?

Claire Minett and Hayley Goleniowska at the
National Diversity Awards 2016

I am a self advocate for the International Mosaic Down Syndrome Association based in America. I go to the conferences to give inspirational speeches for the visiting families. It is my passion to create awareness for my cause.
I'm also a booking agent for the Culture Device Dance Project which is based in London. I help out whenever I can. I'm always creating awareness through different media formats. I have a 2:1 in a media degree.


The Blues, Views and Downs Side Up News

I realise that there's been a little radio silence of late. I won't apologise because I'm certain that you aren't sitting waiting for the latest instalments from team Downs Side Up, but here are some of the events that have filled our time recently.

Blogosphere Magazine
Life hurtles on, commissioned articles for others (apologies due for those that are late) are increasing, a teen and tween need more attention (who knew!), EHCP plans take research and time (and bucket loads of chocolate), I've taken on a school Trustee post which is quite a steep learning curve too. 

There have been trips, travel and a house full of friends. Natty spent SATs week at home having dancing, swimming and music lessons and we've spent a lot of time desensitising her ready for a routine blood test, by way of play therapy.  

Add to all of this a world that feels like a confusing mess at the moment and I'm sure I'm not the only one feeling my energies sapped. Our thoughts are with all those affected by recent events in out cities, and we cling to the hope that we can all pull together moving forward.

BBC Series The Met Tackles Tricky Taboo

Trigger warning: In a month where every one of us has praised and thanked the emergency services for their selfless bravery when helping others and keeping us safe and politicians have debated funding and resources for these vital services ahead of the general election #GE2017, all eyes are on gritty BBC series The Met, which provides a behind the scenes look at life for London's police force.

The Met tackles a sensitive subject this week as they support
a woman with Down's syndrome 

Every so often such a fly on the wall documentary highlights a painful issue, one that unites the public in disgust. Our collective humanity is strengthened by our revulsion towards those that harm others, and nothing ignites the nation’s emotions further than witnessing wrongdoing against the vulnerable. When the topic is abuse of children for example, we gather together in our resolve to protect them, to throw a safety net around them, to keep a watchful eye out for those who wish to cause them harm.
 “ Unless we are outraged, unless we know uncomfortable truths, how can we rail against them, prevent them from ever happening again.”

Give Your Child a Fruit Juice Boost

As with all children, I'm keen that Natty gets a good balanced diet. A weakened immunity and frequent constipation, however, mean that I have to pay particular attention to keeping her hydrated and supplying her with her recommended daily dose of vitamins and between 5 (and more ideally 10) portions of fruit and vegetables a day.

There are many benefits to a daily #FruitJuiceBoost

Encouraging a child to eat more fruit and veg can sometimes be tricky and requires some sneakiness on your part. Try blending veggies into pizza sauce or packing them finely-chopped into soups, as well as making artistic creations with fruit. You might also consider playing counting or sorting games with fruit and veg.

Super Gifts for the Senses

You'd be surprised how often people ask for my advice about what kind of present they should buy for a child with special needs. 

Birthdays and Christmas only come around but once a year and it's important to make your gift one that will light up a child's eyes and be used frequently, whilst aiding their development in a fun and gentle way. 

Find a present that will delight, educate and develop the senses

Let's Celebrate World Down Syndrome Day 2017

Let's Celebrate World Down Syndrome Day 2017!

Mia and Natty celebrate World Down Syndrome Day 
with funky socks to represent chromosomes

The 21st day of the 3rd month sees World Down Syndrome Day - the date 21/3 representing 3 copies of chromosome 21 which leads to the common condition.