Supporting Your Child with SEN When You are Moving House or Renovating

Moving house is one of the most stressful events you can experience in life, or so they say. 

Having moved three times in three years, whilst simultaneously going through a difficult divorce AND trying to main stability for Mia and Natty, I'd have to say I agree. 

Moving house and living in an older property that needs work can take its toll on young people with special needs too. Their routine can be upset, they are not the focus of your energies and can feel destabilised without their familiar surroundings. Then there are their physical and medical needs to consider as well as doing any DIY safely. 

But while moving has been exhausting, emotional and at times stressful for us, the girls and I have become closer as a result, and we've picked up some really useful hacks along the way. 

Top Tips for Supporting your Child with SEN When You Are Moving House or Renovating a Property

The girls and I immediately fell in love with our 60s bungalow even though it needs a bit of a makeover. I'll just say that Googling ways to remove woodchip wall paper have featured heavily in my life this year, and Mia has started a Bungalow Renovation Project mood board on Pinterest.

A replacement bi folding door that Natty can open easily is on my wish list

• First things first You will want to choose the location of your new home with your family's needs in mind. Look for the locality of a suitable school, particularly if your child is in specialist education. You'll also need to look at nearby medical support and the proximity of other amenities such as transport links, accessible parks or support groups. 

• Similarly, you will want to make sure your home can accommodate your child's requirements. If your child has a physical disability, you'll be looking at accessible access, room for equipment and so on. Children with sensory issues might prefer a quiet location, and for me safety was paramount. Natty is unaware of danger and so being away from a main road in a property with secure front door and a fenced-in garden were key. 

• Prepare your child for the move by talking about what to expect. Show them the new house and perhaps make a scrap book of photos. You could create a social story or read a book such as Usborne's Moving Day. 

• Allow your child to pack their own box of precious things that they want to have on the first night in the new home. It might include their favourite toys or a photograph.

• You might decide that moving house is best done while your child is at school or with a carer. But, if appropriate, older kids and teens might like to be involved. Helping out on removal day can help the move seem more real.

• Say goodbye to the old house. We stood in each room and remembered one happy thing that had happened there before we said farewell and hoped the new family would be happy there. 

• Make the day as fun as possible even if you are stressed. Children pick up on our emotions and this will set the tone for how well you all settle in your new home. Perhaps a friend or cousin might like to come over to help. Natty was so excited when her beloved. Uncle Carl arrived to help us move and the whole day involved impromptu wheelbarrow rides! 

• It sounds obvious, but make sure that bedding, favourite snacks, a kettle and tea bags and any medication or equipment your child needs travel with you. Have an essential box to hand as well, containing a few tools, light bulbs for quick fixes on arrival. 

Support you child with a book about moving house

• Settling in I quickly noticed that our house had condensation and mould on some of the windows. Damp and mildew isn't good for anyone, particularly a child with compromised immunity and a history of respiratory infections. So I decided to install a dehumidifying system. 

• Making sure you are going to live in a safe and healthy environment is vital. It's worth paying a professional to check/install smoke and heat alarms immediately, as well as certifying electrics and gas boilers, fires and so on.

• I always sort out the girls' rooms first. A deep clean, a lick of paint and a few twinkle lights, go a long way to helping them feel settled. Using familiar rugs, duvet covers and putting up their art work will make everything feel homely quickly. I made their beds feel like new with a sumptuous hybrid mattress topper each from Simba*.

• I try to keep removal boxes in their bedrooms to a minimum so that they have a little calm haven to retreat to when the unpacking gets too much. Let youngster make choices about the layout and colour scheme of their rooms if you can.

• Take your time before embarking on bigger, more expensive projects. We love our 60s bungalow which has some quaint original features. I'm doing a lot of the basic DIY projects myself, like stripping wood chip wallpaper and painting the walls and skirtings. But after living here for a year, Mia, Natty and I have decided which bigger jobs are essential.

• Live in your for new home a while rather before you decide what needs doing. Some things you'll learn to live with and some things you will soon realise you can't stand. We have an original sliding patio door that is impossibly heavy for Natty to open by herself. I struggle too, so a replacement bi folding door is on our wish list.

• Easier said than done, but try to keep chaos, mess and dust to a minimum. Crucially paint or other chemical fumes are dangerous, so keep windows open and do this kind of work when youngsters are at school. Similarly keep dangerous tools locked away and out of sight.

• In moderation, every family member can have small achievable and safe chores to do in your new home. Being given jobs to do boosts young people's self-esteem and confidence. And we all want to be part of the removal and renovation A team after all, don't we 😊

*This post contains a link for which I was gifted an item to compensate for my time.

Foxes Academy and Hotel: Fostering friendships and life skills

Foxes Hotel

Minehead, Somerset, England

8 out of10Telegraph expert rating

As lockdown eases and life opens up safely, I am delighting in watching my two fully vaccinated teens enjoy a little more freedom.

The friendships they missed so sorely are back on track, and with them a boost in confidence. For Natty this means an increase in social skills and independence too. She also has a new PA, someone young and full of energy to hang out with at the weekend. Because what 15 year old wants to spend all their free time with their parents...

Special Needs Jungle recently highlighted that youngsters with a learning disability so often lack a circle of friends, which is something many of us take for granted, but also something we can help set up and foster within and outside of school.

 

Friends, fun, socials skills and risk taking are all an
 important part of developing self esteem

Add in fewer opportunities to make choices about free time, what to wear or eat, or even the chance to take calculated risks and make the inevitable adolescent mistakes, and we find that we caring, worrying parents might be clipping our beloved youngsters' wings.

I'm also pondering the next steps in their journey as they move towards university and college.

So, when Mia, Natty and I visited the famed Foxes Aurora Hospitality and Catering College and Hotel in Minehead a few years ago, it was the close friendships between students that I observed first and foremost. The clear respect between staff and students was also strong, as was the clever way in which every student was supported to be as independent as possible.

Natty pictured with the team of trainee chefs at Foxes Hotel which she reviewed

And then there is staying in the Hotel as a member of the public, being catered for by the team of staff who all have a learning disability. It's a wonderfully unique experience indeed, that left us feeling more like guests of friends than paying customers.

You can read our Telegraph Travel review here for more information, and details to book yourself a little mini break.

"A homely seaside hotel, particularly welcoming of guests with intellectual and physical disabilities. 

It is the UK’s only training hotel for young people with learning disabilities. 

The staff and inclusive ethos of this hotel make it truly special: individual differences are not only accommodated, but celebrated here."

But for now, I'm left hoping that Foxes will one day in the not too distant future become a home from home where Natty forms a close friendship group, learns how to land her dream job of being a waitress and experiences what it is to be as safely independent as possible with a secure and professional safety net around her that isn't always me... her mother.

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

Hairdressing Tips for Kids with Special Needs

Does your child with special needs do all they can to avoid having their hair cut or brushed? Here are our top tips for hairdressing without the tears.

Let your child choose hair brushes, braids and bobbles

Mia has always loved having her hair brushed, cut, twirled, plaited, twizzled and filled with as many hairslides and bobbles as she can muster. Her need for girliness has always outweighed my hairdressing skills by far. I still couldn't do a French Plait if my life depended on it!

Tears, Tantrums and Tiaras: Avoiding Hairdressing

Natty couldn't be more different. With her it's always been full on war to get a brush anywhere near her head. From washing to combing and cutting and every stage in between, we've been met with a full on tantrum or tears or running and hiding in a corner. 

Nurture Yourself: Our MOT Self-Care Checklist

Every so often little reminders come along that it is so very important to look after ourselves.

Nurture yourself with our personal MOT checklist

Being a parent is tough and being a carer adds another layer of stress and tiredness but below are some simple tips for nurturing yourself. 

They're Not All Like Her You Know...

They’re Not All Like Her You Know…

No-one has ever once said to me that not all 12 year olds are like our eldest daughter.

She’s an ace at discus, makes a mean batch of shortbread, is a loyal and generous friend and is confident enough to deliver a speech to a room of student nurses.

Our eldest speaks to student learning disability nurses at Positive Choices 2015

She’s exceptional and unique in ways that make us brim with pride as most parents do  about their offspring. Other kids her age might have dropped through our schooling system, be struggling with addictions or exhibiting anti-social behaviour, others are victims of abuse or neglect, but no-one ever feels the need to tell me that ‘they’re not all like her’.

Individual differences

Now, our 12 year old has a younger sister. She has her own strengths that we are proud to celebrate. She’s hilariously funny with a dry wit that can dissolve a room into giggles in seconds. She can mimic and mime in a way that garners your full attention. She’s sensitive, a sort of litmus paper of others’ feelings and can break up a tense situation like the most celebrated of comedians.

Comedy timing is everything

She also has an extra chromosome. 

And for some reason this leads people to say, “Ah, but they’re not all like her you know.” They say it a lot. 

Doctors have said it. Teaching staff have said it. Friends have said it.

I wonder what is in their heads when this slides from their mouths. ‘They’ does not refer to all 9 year olds of course, but to kids with Down’s syndrome. 

‘They’, a sub set, a type that is expected to be a certain way, more alike each other than the rest of ‘us’ or even their own families. ‘They’ refers to a stereotype that our daughter has just challenged in the mind of the speaker by being herself. Something within has stirred, a deep fear has arisen, an uncomfortable ignorance of ‘them’.

And the ‘Ah, but…’, the lead-in that says that as many of the conventional milestones that our daughter is meeting in this world in which we are all expected to conform to standardised targets, there are those who share her condition that are not.

And the ‘Ah but…’ means that although our daughter is living her life to the full, the speaker thinks that perhaps others with more complex needs would not. Somewhere in their mind is a judgment about which lives are worth living. And which are not.

Last week the College of Obstetricians argued a case for offering screening for Down’s syndrome to all women with a costly new non-invasive prenatal test, or nipt.

The reasoning was not that all women should be given the best possible sets of information to make decisions that are right for them and their families, or even to make preparations for their baby’s arrival. The argument was that this blood test cost should be weighed against the financial cost of support throughout the life of a person with Down’s syndrome. It was being sold as a cost cutting exercise.

So now we come down to the crux of the matter. Maybe some people need more support than we do, perhaps with different ways of communicating from our own, of behaving. And suddenly then we have made a decision that their lives are not worth living, that they suffer, that they would be better off not here.

Undoubtedly there are parents of children with Down’s syndrome who struggle through a maze of battles for support. Who are at the end of their tether with worry, who cannot cope.

Yet when over 97% of siblings report being proud of a brother or sister with Down’s, 99% of adults with Down’s class themselves as content with their lives and 79% of parents report a more positive outlook on life since parenting a child with Down’s (Skotko 2011), we should perhaps focus on quality education and support networks for these families, rather than buying into the misapprehension that the world is a better place without the unique wonder of anyone with Down’s syndrome in it.

New Documentary

This is a subject that is due to be explored in a documentary fronted by actor and writer Sally Phillips this week. She looks at the ethical issues around the way antenatal screening is delivered, the language we use to describe disability and ponders the kind of world we all want to live in, and what we would stand to lose in A World Without Down’s?

And even before people have watched it, I can hear the ‘Ah, but they’re not all like her son…’ echoing around. Of course they aren't.

A World Without Down's?

Which brings me to Uncle Martin

This gentleman, now in his 50s, has greatly changed the outlook and life of his nephew, a dear friend of mine.

Born in the 60s, life was very different for those with a disability and most of Martin’s education came from his parents at home. They in turn would have received little outside help or guidance.

My friend told me that Uncle Martin does not boast any traditional qualifications, has never had a paid job or lived independently. He’s never featured in a documentary, book or advertising campaign. Uncle Martin has led a very different life to the one our daughter is leading.

Uncle Martin shows us the important things in life

But as a young child my friend was not aware of labels and can’t even remember when he realised that Uncle Martin indeed had Down’s syndrome, simply seeing a man who he enjoyed watching hours of The Dukes of Hazzard and Knight Rider with. They got the same enjoyment from these programmes and delighted in playing games together.

Many years later, following the death of his parents with whom he had always lived, a very special residential home was found for Uncle Martin. He flourished in the family-run, warm community. He has his own room and takes great pride in participating in community events when the home opens its doors to sell fruit and vegetables grown in their ever-expanding kitchen garden.

When my friend visits, now with his own family, he finds a man whose sight may be weakening, and whose legs give him discomfort, but who still has the most positive outlook on life.

It is now his young son who is learning much from Uncle Martin. He cannot imagine never having this important man in his life and knows not to judge others’ differences or abilities against his own.

Uncle Martin has been happy and included by all around him. He has taught them the values of gentleness and understanding. He is clearly loved, cherished and in no small way has broken down barriers in his own right.

Future Generation

Children and young people growing up with Down’s syndrome today undoubtedly have many more opportunities and no-one can say what Uncle Martin’s life might have been like with better healthcare and early educational intervention. In many ways it doesn’t matter.

They’ll always be others who are not like Uncle Martin or our daughter or anyone else with an extra chromosome. There’ll be those with more health issues, more challenging behavioural problems, more complex needs. There’ll be those with no healthcare issues at all, fluent speech and a string of GCSEs.

One thing we can be sure about is that we are all unique. 

Collaboration

A World Without Down’s? gives a balanced view of attitudes towards the condition as Sally shares her story. It calls for us to all to take a step back and see the unique qualities of each and every human being and, more importantly, it draws the medical and the social together. It does not dictate. There are no bad guys. It does not seek to remove choice, in fact the opposite is true.

My hope is that it will serve as a springboard to further collaboration, education, understanding and the support that we all need at different times in our lives. Already links have been forged between medical teams and the Down's syndrome community as a result and I am proud to have been asked to work with Oxford University obstetrics students as an Expert by Experience. The ripples are already being felt. 

What this programme and this discussion has cleared in my head though, is that perhaps when society seeks to remove what it sees as unproductive members of its group, it will lose precisely the element that can make it stronger.

One thing we can be sure about is that none of us are the same, and therein lies our collective strength. If you take away the one part that you think is superfluous to requirements, you may soon find that the whole is weaker.

All in the Same Boat - Not Heading to Holland

This week saw the launch of my new regular column over on the Firefly Community, an amazing hub for parents and professionals who work with children with special needs and disabilities. 

Do stop by and join in the conversation, or check out their amazing mobility products. 

It's a community that is very varied, and it got me thinking about what it is to be a SEND parent, if indeed there is such a thing. 

All in the same boat - not heading to Holland 

We are all so different, as are our children, but yet we share common threads. And then I got to thinking about Welcome to Holland and what it means to me.

Skiing with Kids with Down's Syndrome

Please welcome good friend and Dad Mark MacLeod as he shares a guest post with us about teaching his daughter Erin to ski. Erin has Down's syndrome and it hasn't stopped her joining her family on snowy downhill adventures yet! So if you're looking for information on adaptive ski programmes, look no further.

Skiing with kids with Down's syndrome?

Can kids with Down's Syndrome ski with the rest of the family? 

Absolutely!

Using Special iApps to Toilet Train Without Going Potty

A few months ago I had the pleasure of meeting inspirational duo Bev and Colin Dean. 

Special iApps are a fun, visual way to learn

These committed parents have developed a comprehensive and inexpensive set of Apps for children with additional needs. Their son has Down's syndrome and they created Special iApps to help with his communication needs. 

The apps can be used to help children at various levels of literacy, beginning with picture matching, working with words and then sentence level stories.

Here, one Mum describes the Special iApps role in helping her daughter potty train:

Let's see Adults with Disabilities in Advertising?

The tide is shifting. More and more companies are following the lead of household names such as Marks and Spencer and Sainsbury's and including young models with disabilities in their marketing campaigns. Hoorah!

Seb fronts Marks and Spencer campaign

Natty joins Sainsbury's Back to School Campaign

This week our little Natty's face once more peeked from the pages of Frugi's catalogue, as she advertised a glorious yellow cotton cardigan.