The Importance of Respite and True Friends

It's very easy to say...

I need some respite, a bit of time off, a break, a change, a rest...

We all have very different lives.  

Some of us work, some seek work, others choose to stay at home with young children. Very few parents of children with additional needs can afford extra help, some rely on nearby family to lend a hand. Some of us are lone parents, some lonely within relationships, others are fortunate to find themselves within supportive partnerships, team-tagging their way through the special needs jungle.

But what we all have in common, as parents of children with a disability, is that we need time out in order to recoup our energy levels and enthusiasm. We need regular pitstops in order to be better parents and carers. 

All unpaid carers know we need to nurture ourselves, but time for yourself is really difficult to actually factor in to your life for many reasons, often not least because you don't think you deserve it. Read why it is vital do press the pause button once in a while and have a look at our tips for doing so, in this post created in collaboration with Basubu Yoga Retreats, who know a thing or two about restoring the senses.

Being a special needs parent can be wonderful and exhausting in equal measure

Caroline Playle Reviews Resource for New Parents: Down's Syndrome

Review of Talking About Downs Syndrome Cards

2015 / Lisa Warner 

I’m excited to share this lovely review with you all of Hayley Goleniowska’s Talking About Down’s Syndrome Conversations for New Parents by Caroline Playle.

Caroline Playle is a Mum to three children. One of whom has Down’s Syndrome. When Seb was born she was shocked to be told he had Down’s syndrome. She knew nothing about the condition, aside from outdated assumptions and stereotypes, and was full of unnecessary fear of what the future had in store for her family.

The reality could not be further from that vision. Caroline and her family lead a typical life together, facing the same joys, wonders, challenges and experiences as any family. Caroline started sharing snapshot’s of their lives together to show that Seb is a typical six year old who attends mainstream school, loves reading, football, chips and ice-cream and hates having his hair washed. Caroline shares that her son is a reflection of his family and upbringing, he is not a list of characteristics in a textbook and he is more like their family than anyone else with an extra chromosome 21 . 

What I love instantly about these new Fink Cards is their simplicity. The bold, confident colours and clear font makes them very approachable.

When I was told my baby had Downs Syndrome I threw myself into researching the condition. It was utterly overwhelming, so much information to take in at the same time as becoming a new parent. These Fink cards are absolutely perfect, they are beautifully concise and the card format means they can be taken in small chunks and you choose when and what feelings you wish to explore as and when you feel ready to take on more information. Plus we all know that talking helps with coming to terms with an out of the blue diagnosis. These cards encourage talking in a really gentle way. I can imagine these being so useful at support groups of parents with new babies, getting to know one another and sharing their experiences.

Best of all these cards are about YOU, YOUR baby and YOUR feelings. They are not telling you what will or will not happen, they are not filling your thoughts with all sorts of scenarios that may never come to fruition and they are not limiting your child or your child’s ability. This for me is the genius part of the idea. These cards allow you to explore your thoughts whilst keeping the focus on you and your child and not anyone else with Down’s syndrome.

My biggest regret when I was told my son had an extra chromosome 21was wrongly seeing him as “Down’s syndrome” instead of seeing him as my son. These cards will go a long way to allowing parents to take on board how they are feeling and where they are heading without the unnecessary fear and pressure of a stereotypical idea of what they might otherwise have thought lay ahead. I have no doubt this resource will go a long way to making sure new parents facing a diagnosis don’t miss out on precious, early moment by fearing an outdated or unknown future.

A really fantastic resource for any new parents faced with a recent diagnosis, their families, and medical and health professionals. I have even found them useful in exploring my own feelings, 7 years down the line!

For more information about Caroline please visit her Blog or find her on Twitter and Facebook.

You can order sets of the conversation cards direct from Fink, priced £14.99.

Resource for New Parents: Talking About Down's Syndrome

This is Elijah: a Mum's Journey with Down's syndrome

Today's #TeamT21 monthly blog round-up kicks off with a beautiful, honest and inspiring guest post from Elijah's mum. So much of what she says will resonate with you, from her early shock, to recognising just how great the changes that parenthood brings about in us all are. 

Warrior Mums by Michelle Daly

I am very proud to feature alongside many inspirational disability advocates and campaigners in new book Warrior Mums.

A few months ago I met a truly inspirational lady, Michelle Daly via Twitter. In  nutshell, Michelle was the youngest person ever to become the legal guardian of someone with a disability in this country back in the 70s, and she has written an incredible story about her journey with Marie in her must-own book With a Little Help From My Friends.

Learn to Expect the Unexpected When You're Expecting

I firmly believe most Mums-to-be have rose-tinted expectations of what pregnancy, birth and beyond is going to be like. So what are the realities of motherhood? What did I wish I had known before our family expanded? What's it really like to have a baby...?

Being something of an eternal student, I approached my first pregnancy in much the same way as a very exciting and practical college course. Books on ovulation, conception, pregnancy, nutrition, exercise, breathing, visualisation, birth, and beyond lined my shelves. I read and devoured the facts within their pages as if memorising them would help me gain the planned top grades in the final assessment.

Shine Bright Natty: Nativity Star Realisations

Star

was one of Natalia Hope's very first words. (Along with 'cake' and 'chocolate' and 'more'!)

And her name means 'birth', a December-born baby who was allowed home from hospital on Christmas Eve. The greatest gift ever imaginable.

Our little star 
loves this time of year, the lights, the twinkling, the craft activities, the gifts, the sing-along DVDs, the family and friends. She'd happily let the festivities carry on all year if she could. I wonder if you know anyone like that...?

There's so much to do, see and take part in, a veritable sensory learning paradise for many children. Of course one of the most anticipated dates in the calendar is the school play or concert, and this year Natty's class are staging a classic Nativity. Last year it was The 3 Little Penguins and Natty nose-picked, danced and grinned her way through the performance, just as her peers did, literally dressed as a star.

Last week I opened Natty's book bag and removed a slip of paper. I think it read along the lines of:

Your child, Natty

will be performing in the Christmas Nativity play

as Mary.

Please supply dark leggings and a white top.

(And bring tissues.)

At least I think that's what it said because I didn't read past the word Mary. Tears welled up in my eyes. Daddy Downs Side Up complained of dust in his eyes too. We hugged our little star and signed 'proud' through our smiles and tears and whoops of excitement.

Now everyone I have told about this says, 'Ahh how lovely.' Or, 'Oh she'll love that!' Or, 'You must be so proud'. I bet your first reaction was just that too was't it?

Yes. 

Yes. 

And yes. 

It is. 

She will. 

And we are.

The day she arrived in our lives I foolishly feared we would never step out in public again. Then there were our worries over whether she would survive heart surgery. I was afraid to love her unconditionally in case she didn't make it and it would hurt too much if I had taken that leap. We had no idea of what lay ahead, but we vowed to take one step at a time and always follow Natty's lead in what was best for her with regard to schooling and interests.

So to hold a piece of paper in my shaking hands saying that she had been asked to play the central role in the (mainstream) school production was beyond wonderful, beyond our wildest dreams. This year Natty would be the star alongside her 'typically developing' classmates. My heart was bursting out of my chest with pride. 

The part is made for Natty I must say, she gets to stand centre stage, she'll think all the applause is for her, Mary isn't a big speaking role, just a couple of precious lines that we have practised so hard that she is shouting them in her sleep, and she gets to hold a much-cherished doll throughout.

(I just hope she doesn't have a grumpy moment as she did when she played a sheep 2 years ago...)

The grumpiest nativity sheep ever?

So why then are the tears of pride stinging? 

Why are our hearts alternately singing and weighing heavy? Why do I want to add a 'but...' to your ooooohs and aaaaaahs? Why am I a little nervous of the event, fearing making an emotional fool of myself?

Because seeing Natty up there on stage, playing the most famous and gentle mother of all mothers, the Virgin Mary, lovingly holding the symbolic baby Jesus in her arms will be a very powerful and graphic reminder that our youngest daughter is unlikely to ever become a mother herself. Even if she was physically able, it wouldn't be in her best interests emotionally, for becoming independent and able to look after herself with support is our best aim. 

The day she was born I sobbed over this fact. I grieved the loss of the Grandchildren I assumed she would bring to our family. It came from some primeval place deep within my soul, a place that the head cannot rule over however logically you try to reason it out. I thought I had come to terms with the fact over the years, I can watch Natty play with dolls now without her words 'Look at my baby', sending me rushing for my sunglasses. But I realise, sitting here with tear-stained cheeks after driving home from school releasing chest-deep sobs alone in the car, that I am far, far from that place.

Now, Natty's fairy Godmothers don't have any children. Her Great Cousin doesn't have any offspring. One of my dearest former colleagues cannot bear the thought of reproducing. 
But for all of them it was a lifestyle choice, a decision that they made.

My oldest chum and her partner were unable to conceive and have just adopted a gorgeous little boy after years of heartache. Having children isn't the be all and end all in life, but if you want them and are denied that privilege it takes a lot of soul searching to come to terms with that fact. It's a loss, an empty void, that is hard to fill.

And one day we will have to have that heart-breaking conversation with Natty, who may or may not understand the whys and wherefores. 
We will have to explain to a young woman who loves babies, that she cannot become a mother, as her elder sister is likely to.
I hope the realisation doesn't crush her.

Perhaps she will fill her life in other ways, get a job in a childcare capacity, or maybe it will never cross her mind to be a mother and I am overthinking the whole thing. It's all a long way off and I don't know any of the answers yet. I don't even know what all the questions are. I will look to the families I know and respect who have led the way for advice and support.

I do know we will have to turn being an aunty (which she and Mia are already) into an important and valued starring role, just as we view motherhood.

Aunty Natty teaches nephew Baby Max to say 'Oooo'.

So if you see me sobbing in a village hall at 6pm tomorrow evening, please excuse me. You now know it's not because I am over proud or pathetically pushy or super soppy. 
You'll know it's because I am taking in and assimilating all of Natalia's unique star qualities. 

See the photos taken during the nativity performance here. 

It was 'alright on the night' as they say. 

New Dad Talks about Life with Down Syndrome

A few months ago I recieved a beautiful email from Matt's wife Laura. It was the sort of email that makes me realise that I am not writing into a vacuum and that DSU is achieving what I set out to do, to support new parents, let them see that life with Down's syndrome will go on pretty much the same as it did before, only better, despite the health setbacks. I never share emails or comments that are sent privately, but Matt has penned this piece especially for you dear reader. Meet the Horsnells:

I’m new to this…

October is Down’s Syndrome Awareness Month in the US, and many people, some of whom I’ve got to know remotely over the past 8 or so months, have been penning excellent blogs focussing on what DS is, and what life is like for children and adults with DS, and for their friends and families.

One of these people is Hayley Goleniowska. I’ve not yet had the pleasure of meeting Hayley and her family, and the chances are that I would not have even heard of Hayley but I have. I have for two reasons.

The first is because my daughter, Ada, who was born in February this year, was diagnosed postnatally with Down’s Syndrome. Like most couples expecting their second child we were excited, fairly relaxed, and slightly anxious about the onset of life with two children under two. I was expecting a little less sleep, possibly some jealousy from our eldest having to share her mum and dad for the first time, and another couple of months of intense nappy changing.

What I wasn’t expecting was that our baby would be born with DS. Not that it is relevant, but since everyone asks (and please do stop asking parents of new babies) we did have the run-of-the-mill screening, we were considered low risk, and I should imagine like most people we didn’t think anymore of it.

I didn’t even think about it when our baby was born. The birth was incredibly smooth, labour seemed easy enough (from where I was sat!), and Ada was delivered into the world with her amniotic sack intact, something the midwife instantly told us was good luck.

Looking back now, I’m not sure if I started to suspect that something was wrong during the night or during the next day as we were waiting for the all clear to leave the hospital. Her hearing was fine and she’d had some basic tests. Then there was some scuffling by the midwives that they were waiting for someone to listen to Ada’s heart again, as there was a suspicion of a murmur.

What followed, predictable though it is as you read this, came as such a shock to us. 

We were told that our daughter in all likelihood had Down’s Syndrome.

I have never and probably will never feel again the gut wrenching, heart aching flush that took over me in that moment. I could probably tell you exactly what all the doctors, nurses and midwives were wearing, who was standing where and what was still left to pack into our hospital bag such is clarity of the moment when we were told. I won’t dwell on it here, suffice it to say that we were told it straight. It even made some sense when they said it, after all our baby had seemed a little weaker this time, she’d not latched on very well, there was some concern that her eyes were a little puffy and she became incredibly dry during the night.

Looking back, I’m not sure if it was my ignorance to the facts, or that I was suppressing something that I didn’t want to accept. Either way I have never had the earth pulled from under me so quickly as I did that day.

In the hours, days and weeks that followed I did my best to try and understand what Down’s Syndrome really is and what the realities for my daughter were. We are incredibly lucky to have a loving family who really rallied around. My sister and her husband in particular had, to my on-going pride, been very involved with Scope and Mencap for some years and so instantly knew in which direction to point us. We had soon located the very aptly named, Cambridge Baby and Children with Down Syndrome Support Group, and I’d received a second hand copy of Andrew Merriman’s A Minor Adjustment through the post, sadly it is out of print. [A Minor Adjustment has just been released on Kindle - H]

The other source of information we had during the early weeks were blogs, which leads me on to the second and true reason that we have heard of Hayley. Hayley is such a strong advocate for Down’s Syndrome and it was probably through a google search of “Down’s Syndrome Support Blog” that we found DownsSideUp.

Although I had been able to read the literature the hospital had given us, and had managed to read most of the Down Syndrome Association's website for new parents, it was Hayley's blog which instantly struck a chord with my wife Laura. 

Laura had been unable to read anything about DS in hospital until I read her Hayley’s posts. Hayley, like us has two daughters, seemed genuinely nice and was actually getting on with living. I read many of her posts to Laura and we cried out loud together, partly through realisation that we were not alone, not unique, and partly because her blog offered hope, and happy photos and stories as well as facts.

Like Hayley and many, many parents we had our initial problems. Ada had very dry cracked skin, for which we were prescribed pure sunflower oil, olive oil brought her out in a rash, yes we experimented! We had 5 weeks of feeding through a nasal-gastric tube, which was tricky at the best of times, and incredibly, arm achingly slow, but Ada was feisty and really didn’t want the tube in. So, despite being desperate to get out of the hospital after our 8 day marathon just a few days earlier, we started then what has become regular trips to Addenbrooke’s Hospital.

This an extract from an email I sent to my family at the time that sums it up well:

“Ada discharged from neonatal care, as all going well, and had put on another 100g on Wednesday (@25gms/day) so we’re up to 7.5lbs. Now responsibility of health visitor and early years support team.

Lots of appointments arranged... genetic counselling, foetal medicine counselling, counselling, physiotherapy, speech therapy, bonding and attachment therapy, portage, ophthalmologist, heart scan, hip scan, repeat thyroid, baby massage, child development team and last but not least the standard six week check next week."

Fortunately things have calmed down since then and Ada is now nearly 9 months old.

She loves going to Yoga with Mummy, and she started swimming lessons with me a month ago. She is happy and healthy and is the apple of her sister’s eye, who quite often states with pride “You is the best friend for me ever!”. Ada was fully breast fed for 6 months and is now enjoying solids too. She is sitting and just this week started to clap.

We’ve been on a family holiday and, albeit small-scale to the Norfolk Broad’s this year, we’re determined to tackle flying abroad next year if we can. We’ve been camping at a music festival and we’re just about to move house. 

I mention all this, because we nearly lost sight of it all 9 months ago. It just didn’t seem possible. How very wrong we were.

Matt Horsnell - Ada's Daddy
 @maver on twitter

Humiliatingly Glorious MADSday

This evening sees the blogworld's version of the Oscars. The star-studded MADS takes place in a swish hotel. We've all dug out/ panic bought some finery and they will ply us with exquisite food and a little wine and then the excitement of the awards, recognising the excellence of the work of everyone present.

Well if you all think that sounds like my life is one long glamorous party, let me bring you down to earth quick sharp.

This morning just after hubby had left the house I began 'my eblutions'. I had settled comfortably on the loo to check my emails on my phone (we all do that, right?) when the house phone rang. At 8am it could only be my husband. 

'Get the phone Natty darling.'

Natty picked up the radio phone in our bedroom. 

'Hello yes. Yes. It's Natty.'

'Is it Daddy?' I called from the smallest room in the house.

'Yes!'

Her little bare feet pattered into the room as she continued into the handset, 'Mummy is doing a poo poo.'

I rolled my eyes and grabbed the phone. 

'Er, Mrs Goleniowska, it's medical Delivery Services. I have a toilet step for Natty. Will you be there for the delivery?'

There was no point trying to bluff or explain or dig myself in deeper. 

'Yes, someone will be here.' My voice echoed in only the way a tiled bathroom can allow.

Humiliation complete.

Kicking off Learning Disability Week with a vlog about confidence and friendship

I was asked by the Foundation for People with Learning Disabilities to put together a designated blog post for them as part of Mencap's Learning Disability Week #LDWeek13 this year.

I was honoured, and set about thinking how best I could join in with their theme of planning for the future and safeguarding. At 6 years old, Natty's adult life seems far far away, so I decided to chat about the importance of self-help skills, and specifically making friends, which in turn boosts self confidence and self-esteem. Vital commodities for us all.

Armed with a new iMovie Phone App, I decided to try my hand at a vlog, incorporating an interview with Natty and some lovely photos. I warn you, I am very much an amateur, but I do hope you can find a few minutes to sit and enjoy our chat and then join in with the #LDWeek13 celebrations by using the hashtag on Twitter, posting to Mencap at Twitter and Facebook and adding your posts to the linky below.

Watch out for my equally suspect poetry skills on Wednesday, when my #superhero post for Mencap airs!

                          

Proud Mummy Moment

I will try not to brag but....
(we are really very proud and need to celebrate.)

Natty came rushing home clutching 2 precious sheets of paper yesterday.
On one she had written the entire alphabet, independently, for the very first time:

On the other she had written random numbers up to 15 on the whiteboard as the teacher had asked her to:

Now every child develops at their own pace and has strengths and weaknesses in different areas. Natty just happens to love writing, tracing and copying, so we harnessed this. That said, this process has taken all school year to master, using Jolly Phonics actions to start with, then Ruth Miskin picture flash cards to visualise each letter with a writing action and lots of sensory activities, drawing in the air and on backs too.

Read our Tips for Writing here for more information on seating, pencils and activities to try.

Sports Day Sunshine

Last Friday saw Natty's first ever Sports Day! Woohoo! 

Egg and Sppon gentleness

Last year we had planned and practiced, mainly what was expected of her, what each activity entailed and how to wait her turn, cheer on her friends and so on. 

Well, if you can cast your mind back to last summer, it rained. It rained a lot. It washed out 3 scheduled Sports Days and then we ran out of term time. The weather matched my mood, I was so very very disappointed that Natty and her classmates didn't get their first experience of this tradition.

Pippin is smuggled in

However, straight after half term (nice and early in case the weather decided to change its mind) we received a slip giving us the date of this year's event. Straight in with no time to plan or dilly dally.

Sun cream and hats were the order of the day and we turned up proud and excited to watch Mia and Natty enjoy the fun together. They had been put in the same team which pleased them both greatly. In fact it was the first time Mia hasn't complained about not looking forward to Sports Day in her 5 year long school career.

We even brought Pippin with us (Dogs, we later discovered, weren't allowed, so I hid him under my arm and pretended he was a fluffy handbag with legs.)

Now for those who think Sports Day is about being competitive and sporty and excelling and winning, well there is that element, it is brought out in some more than in others. But there is so very much more to it. This Sports Day was very inclusive; every child competed in every event, including the ice lolly pit stop. Older children worked with younger children to encourage and support them. There were future athletes, children who shun excercise and wouldn't put team sports at the top of their list and children with LDs and physical disabilities. 

The sense of achievement for all involved was all too plain to see. Look at Natty's face when she threw her last and 5th hoola hoop and it when over the pole. Priceless. A boost to any child's confidence.

Hoola hoop over pole result!

I was nervous about the 100m race. What would she think as her long-legged friends tore down the straight ahead of her? Would others look on and feel sorry for her 'bless her'. 

Not a bit of it. As Natty tore down the straight as fast as she could, watching her friends disappear over the finish line ahead of her, she looked from side to side at the crowd, with a grin as wide as the Cheshire Cat, and she waved. The crowd roared with cheers as she finished and many other Mums had tears, making my wracking sobs slightly less conspicuous. Pride doesn't come close to describing what we felt. Sports Day being one of the events we wondered if we would ever watch when Natty was born.

Hurtling down the track, waving to her public, after all her friends had crossed the line

Another little girl's wheelchair had to pull over for a pitstop as it was experiencing 'technical problems' because her TA was pushing it so enthusiastically down the straight, so high was the feeling that afternoon. I'm not sure it was made for such speeds ;)

Javelin Thrower par excellence

The egg and spoon race was a similar story. Natty carefully and gently tiptoed down the track, only dropping her egg once. Slowly but surely went that tortoise.

So, new skills were learned, confidences were boosted and our little community was again brought together, brought closer by the variety of children we have in our midst sharing a common goal that afternoon. For, as Mia says, 'Everyone is different'.

I reflected on our Sports Days, when I was always the last to be picked, made to feel chubby and useless, with sadness. Thank goodness those days have gone for our girls, although some schools have yet to fully embrace a properly inclusive Sports Day so I understand.

It's amazing how events like this rake up the past isn't it.

Tricky bean bag event

We returned home happy and with sunshine in our hearts, a few millimetres taller, our chests puffed out far. Mia was beaming. Natty was unusually quiet. When we looked around she had fallen asleep in the car...

The Power of the Humble Blogette: an example

I never knew when I started poring my simple musings into my Mac that it would mean strangers coming up and shaking my hand. Well that's exactly what happened this weekend.

We had popped into town for summer sandals. 
This is a tricky job at the best of times. 

The combination of Saturday bustle, busy pavements, a child who hates being measured but loves to show off and leap around the shoe shop shouting 'chase me', a daughter with very distinct fashion sense hellbent on black patent rather than strappy summer footwear, the constant wrangles over walking properly, holding hands to cross roads, the mantras we repeat to encourage road safety, the swinging her along between us to cover the few hundred yards back to the car when she has given up walking, my refusal to use a buggy if its only for my convenience, little shops that don't stock the size you need, lack of choice under one roof, 2 children to find shoes for in one trip....

Anyway, it was definitely a 2 man job and it took all our patience and might, some jelly sweets and the promise of a playing of Mary Poppins to deal with it with a jolly smile on our faces.

With 2 pairs of identical sandals purchased from shops at opposite ends of town in the bag, it was time for sustenance. 

We stopped and flopped in a hearty healthfood cafe and ordered jacket spuds and tea to boost our spirits. The girls asked if they could sit alone. What a super idea we thought. They could feel independent and grown up sitting at a table right next to us.

As it happened the plan worked beautifully. They played with a few toys provided. Natty sat still, didn't get down from the table once and ate her simple lunch which Mia had cut up for her and they chatted together easily without interruptions from the parents. They felt very proud of themselves.

I noticed people looking. Perhaps they thought we were bad parents for banishing our children like this? Not wanting to sit together.


But no.

As we got up to leave a lady and her mother came over. They just had to tell us what beautifully behaved children we had and how touched they were by their closeness, how amazed they were by Mia's gentle helping way with her younger sister. They left by saying we must be very good parents.

Wow, what a compliment!


Then, as we paid and donned our coats, the shoe shopping stress a distant uncomfortable memory, the chef of the establishment came out from the kitchen with his wife. This was a couple of a certain age, who clearly work all the hours they can to run a successful eatery. I didn't have them down as blog readers.

The man leant forward and shook our hands. "I follow you on Twitter" he said. "What you do is amazing. I can tell it takes a lot of time." "What you do for others as a family is brilliant."

And there you have it. You never know who is reading your words and the effect it is having on them when you blog your heart out. Did this couple have any connection to Down's Syndrome? They didn't mention it if they did. And that has always been my aim. To gently change perceptions of the condition from within hearts, without people even realising that I am doing it. Not preaching to the converted, but drawing in those who are not.


If you enjoyed this post you might like to read Downs Side Up: A Gentle Mummy Activist