Counting Fun with Five Little Speckled Frogs

Natty has been working on adding and subtracting numbers at school recently and we've been finding fun ways of looking at this maths concept with her. 

Counting Fun with Five Little Speckled Blogs

She came up with her own counting system using some driftwood and 5 playdoh frogs. But she couldn't quite get through the video without disolving into infectious giggles.

Kinesthetic Learner

SEN pupils, as all children, benefit from looking at things from different angles, and incorporating various skills together to embed new ideas. We all learn through song and action, the kinaesthetic approach, much more readily (I bet you can still remember songs from your primary school days as if it were yesterday).

We were walking along one of our local beaches recently when Natty found a fabulous little stump of driftwood. She bent down to pick it up, and holding it aloft she exclaimed, "Look! The Five Little Speckled Frogs' log!"

Maths in Art

It was indeed and we promised to hurry home, wash it and create 5 little frogs to sit atop. Big sister Mia helped her whilst singing the counting song as they went about their work. Natty chose the colours of Playdoh she wanted to use and set about making the little round amphibians all by herself. I love when art and numeracy and music come together in this way!

She was very proud of her efforts and took the log to school to do a Show and Tell with her froggy numeracy props. She also enjoyed singing for her captive audience at home, her family. Here she is about 3 minutes before she fell asleep that evening, determined to finish the song despite yawns, uncontrollable giggles and being too tired to know the difference between a frog, a grub and a glub!

Five Little Speckled Frogs

I guarantee it will make you giggle. Ladies and gentlemen, Natty brings you Five Little Speckled Frogs Sat on a Speckled Log...

If you enjoyed this post you might also like the video we made when Natty insisted it was her birthday (even though it wasn't). Yes it was. Yes, it really was.

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. 

My Superheroes for #LDWeek13

superhero  (ˈsuːpəˌhɪərəʊ)
— n  , pl -roes
	characters with superhuman abilities or magical powers, wearing a distinctive costume, and fighting against evil

Learning Disability Week is an annual awareness-raising campaign organised by Mencap. This year it is taking place from 19-25 August 2013 and will celebrate people with a learning disability, their families and supporters by asking the question; who is your real-life superhero? 
I was honoured that Mencap posed this question to me, and here is my answer, in the form of a poem (bear with me, poetry is not one of my superpowers).

Disguised in scrubs and gloves
a uniform of blue or white
or none at all
our superhero morphs

Her face smiles kindly
a wisdom that has seen, 
or with enthusiastic youth
he embraces our fears

'Go and love her'
'An ambassador you will be'
'She'll teach you'
'We will be here'
'You learn how strong you are when there is no other way'

The superhero stops us falling
drowning
going under,
saves a tiny life worth living

He fixes a heart
Helps you walk, talk, see, hear
Makes tea and listens
Congratulates, helps, believes

She paves the way with her example
a role model, 
a patient visionary
the tireless ambassador

Barriers are smashed as
Superheroes include, encourage
proudly teach and expect
they know no stereotype 

Transported into school
hospital, here at home
or online
our hero is there

She wields a gift, an invite
patiently shows flashcards
a scalpel, keyboard or camera
his weapon of choice

Her whistle blows loudly 
arch villains he outs
gently melting our hearts
future change from the start

For our superhero is one
is many
is you

Full of heart, so selfless and true

When I was asked to write about my superhero I wondered where on earth to start. Would I write about  our daughters who have taught us so much? Mia the thoughtful, gentle soul, with a keen sense of right and wrong. A feisty know-it-all, equestrian and dance queen? Natty who melts hearts wherever she goes, and demands a rethink from all she meets about what Down's Syndrome means today. A model fighting for ad inclusion, a loving daughter, an annoying sibling, a team player, a valuable classmate?

Or my unfaltering husband who simply announced that Natty was our daughter and that she would be fine as he proudly held her aloft on the day that she was born? Our wider family who swooped in to help?

The wise midwife who shook me out of my self-pity, the breast feeding support, the trainee doctor who smiled and told us we would be ambassadors for children like Natty when she was 3 days old. I wish I could track him down and tell him how motivating his words were.

But I couldn't miss out the surgeons and doctors that had saved Natty's life. Or the neonatal nurses that cared for her, and nurtured our bond in the early days. The emergency middle of the night medical strangers, the familiar staff on the paediatric wards. Where would we be now without people like that?

And what about the physio and SALT and portage worker who lifted me with tea and encouragement each week in the early difficult days as they gently encouraged Natty to reach her potential.

The teachers and TAs at Pre-school and school who embraced different methods of teaching, who believed in Natty's abilities and spent hours working out what they were and how to nurture them.

To everyone who has seen my worry, tears, frustrations and listened. To those who offered childcare, tea, hugs, meals, advice, resources, some of whom I have never met in the invaluable online support network.

The charities we couldn't have done without, both those who have provided support directly relevent to our family, and those who work for a safer better future for our children.

The fellow ambassadors, the writer, the photographers, the campaigners, the politicians who believe?

And finally the wonderful adults I have met along this journey who have a learning disability. They light the way for us, make our lives more colourful, show us what is possible. They are the role models for our children.

So, a mix of them all is had to be, and my poem depicts a superhero made up of all these people. A multi-facetted superhuman, whose costume and appearance might change but who influence remains constant.

Thank you to our super heroes this Learning Disability Week.
Join in the hashtag #LDWeek13 on Twitter and link up your posts their or in the linky below.

You can follow our exploits @DownsSideUp as well.

Last day of school term: A time to reflect, and the teachers' present debate.

Tomorrow (finally) is the very last day (we thought it would never come) of our school year! Natty has finished her second year of formal education, we call it year 1 in the UK (confusing I know, but it comes after Reception Year).

It's been a wonderful year with many highs, culminating in a school report with all A's for effort in every subject, regardless of achievement. Yep, that's our Natty, throwing herself into everything she does with gusto. 

Natty has learnt to write all her letters, has just moved to reading books at level 2 with a couple of sentences to a page, and loves her number work. 

Not only that but she has made many firm friends and creates games with them, throws herself into PE and loves to chat over lunch with others. There has been far less 'hands on' interaction with her peers when she is tired, so she has learn appropriate behaviour for her age.

She's a valued member of her class and has become increasingly independent with all areas of self help. We are overjoyed! And how far we have all travelled in that past year, when I look back to the worries and fears I had when she began her scolastic journey.

So, how do we mark the end of a year's worth of mornings of dashing around the house shouting 'shoes', 'finish your porridge' and 'where's the dog/book bag/hair bobble/show and tell/Doublebase cream?' while Natty sings Mary Poppins, and Mia draws another picture of a dinosaur for a friend???

Well, we thank those we couldn't have done it without.

There's a lot of chat about whether we should give gifts to teachers at the end of term. It's just their job, they're paid to do it, right?

Well, yes they are, but most of them really go the extra mile to ensure that our most treasured loved ones are happy and healthy and reach their potential in a fun way. And if your child has a TA or two that help them personally, then they deserve even more recognition. They have encouraged and explained, nurtured the friendships, known when to stand back and when to get involved. They have learnt the art of helping without being seen, monitoring whilst sitting next to someone else. They have liasied between home and school. They have spent evenings and weekends making materials and planning fun new ways of learning. None of which falls into 'simply doing your job', not at any price.

And more importantly, what lesson are we teaching our children when we encourage them to write a thank you card and give a simple present? We are teaching them to show gratitude, to say thank you to others for their efforts. It's a simple question of manners and being part of a community that helps each other.

So, we have a little gift for the 2 teachers and the TAs (plus an oh-too-cute-not-to-buy babygrow for one TA's new baby,) and for everyone else the girls decorated a cardboard box tonight. I have bought some inexpensive treats to go inside to make a staff room hamper: tea, herb teas, coffee, biscuits, chocolates, cordials and so on. 

I know other parents give cut flowers from the garden, freshly laid eggs or homemade cakes or crafts. It really needn't cost the earth to say thank you.

And after all, what goes around comes around...

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.

Guest Post by Kristian Naylor - Uncle Martin, 50

Kristian is the close friend of a friend, a hardworking single Dad, a gaming expert, a cheeky comedian and the nephew of a man who has Down's Syndrome.

Please read his heartfelt words about his Uncle Martin who is nearly 50, and how times have changed for those with the condition. But have we got our priorities wrong?

Uncle Martin

My Uncle Martin is approaching his 50^th Birthday. He was my grandparents second child, following a gap of almost 10 years after his sister (my mother). They had already started their family later than many at the time following my Grandfather’s enlistment in the Army during WWII. There were no controversial screening programmes back then so they didn’t know he had Downs Syndrome until he was born. 

I don’t know exactly when it was that I became aware that my Uncle had Downs. As a child yes labels do exist, but until you understand them they aren’t how you define something or someone. To me he was always just Uncle Martin. The one who would sit with me for hours watching The Dukes Of Hazzard and Knight Rider, amongst others, and get the same excitement from them as I did. Always picking me up for hugs joining in with whatever game I’d decided to play.

He has not achieved what many would consider great things in his life. He has no qualifications. Has never been the face of a brand or broken down barriers. Has never had a job and he has never lived independently. Aspirations I’m sure many of you reading this will have for your child. Sadly they won’t all achieve them. But does this mean their life will be unfulfilling? That they will not be happy and content? Ask Martin.

He was born in the mid 60’s. A very different time for people with disabilities. Most of his education came from my grandparents at home. He attended little if any mainstream school. Certainly nothing beyond Primary level. His interaction with other children beyond the neighbours was done at groups and centres where all the other children were similarly disabled or were siblings of children with a disability. Into adulthood he attended day centres which were not just about respite for my grandparents. Working alongside other people with disabilities he would normally attend Monday thru Friday, transported to and from the building by mini-bus. From what I understand it was almost like a normal work environment. They would produce jigsaws and similar products that were sold to help raise funds for other activities.  Sadly over the years, government funding for things like this has all but evaporated. He still attends a much more limited version to this day, although it is now only two part days per week.

In late 1988 my Grandfather, who had been providing sole care for Martin since the death of my Grandmother only a couple of years earlier, died suddenly. For a while his older brother who lived close by took Martin in. However as a man of nearly 70 in deteriorating health himself, this could never be a long term solution. My mum was in no position to take him into our home as a single parent with two children under ten. Much as I could see, even then, that the alternatives were limited and not very appealing to her as his sister. 

Thankfully, through a friend’s recommendation, she found a place at a very, very special residential home. It was family run and catered for people with a variety of mental disabilities. He would have his own room and be encouraged to live as independently as he wanted to. Residents were offered the opportunity to take part in the preparation of all of the meals that would be eaten together. In the grounds of the house the owners kept chickens and grew vegetables, which again were activities that everyone could be involved in.

He has lived there now for 24 years, many friends have come, and sadly gone in that time. It very much feels like a family when you visit as familiar faces greet you and ask how you are. He has been very lucky to find such a warm, family orientated environment. Whenever I see him he always has something to tell me about what he’s been doing or what he’s looking forward to doing. He takes great pride in taking part in community events where the home opens it’s doors to the public to sell excess fruit and veg grown in the ever expanding corner of the garden dedicated to that activity. 

Even now his sight is weakening and his legs give him all sorts of discomfort there is always a smile on his face and a practical joke to be played. He doesn’t like it that I’m now the one who picks him up for hugs though...

I’m sure that many of you who read this will be horrified by the thought of your child ending up in a residential home. That there is no way that is something you could/would ever contemplate. My grandparents would certainly have been too. But for me, the years he has lived there have been the happiest and most inclusive of his life. He operates more independently now that I ever believe he would have had he continued to live with family. He comes out every Saturday and spends the day with my mum and now my son, who my mum provides childcare for while I work. I’m proud to say that he, like me, doesn’t see the label. He knows Martin as the one who watches Doctor Who and Transformers with the same excitement as he does. I supposed in that sense Martin has achieved barrier breaking. My son will be more understanding of disabilities as a result of their time together.

So, back to my point. The reality is that despite all the wonderful, positive changes today in how it is handled, not every child born with Downs will achieve everything their parents aspire for them. Certainly I feel that including people born with the condition in mainstream education with support and encouraging them to play whatever part in society they want to is the right thing to do. Who knows what a difference having that opportunity would have made to Martin’s life. But do I think that not having those chances has made his life any less fulfilling and, for want of a better word, ‘happy’? No I do not.

And for me, that last part is the most important. Surely that is everyone’s dream? To be happy. Not just those that are not as able as the majority.

Kristian

SEN Magazine: A Parent's View of SENCOs

I recently wrote an article for SEN Magazine with advice, thoughts and tips for SENCOs from a parent's perpective. 

SENCOs vary wildly as does your experience of them, but all new SENCOs now have to be trained to Masters Degree level. All those I have ever spoken to have been enthusiastic and commited.

In this piece I highlight what a trightrope they walk, trying to please the Head and the parents.

I hope you enjoy it and find it useful. Feel free to print it off for your SENCO too.

SENCOs: A Parents' View.






You might also like to read my
Top Tips For Parents with a Child with a Learning Disability

Advice for SENCOs - The Parents' Viewpoint

Natty at her fully inclusive Pre-School

I was recently asked to address a group of SENCOs (Special Educational Needs Co-ordinators) as they neared the end of their 3 year Masters Degree Course. Their tutor hoped I could provide the missing ingredient to the course: that of the Parents’ Perspective. 

I put my thinking cap on and set to work to come  up with something that would change the way new SENCOs think forever.

I decided to ask other parents and disability groups what they would say to a room full of SENCOs if they had the opportunity. I did this via Twitter and Facebook, and the response was overwhelming. I printed the replies off, cut them up and spread them on the kitchen table. Interestingly they fell into 3 distinct categories, and echoed my own initial plans for the talk.  I weave the quotes from these parents into what follows.  Thank you to all of you that helped.

This article has since been published in SEN Magazine.

Advice for SENCOs - The Parents' Viewpoint

I am a former language teacher and learning support assistant and am now a stay at home mother of two. Our youngest, Natty, has Down's Syndrome.

When I looked back from the parental side of the fence, on my time as an LSA, I realised that I may have been good, but that I was not quite good enough. So I decided to ask other parents and disability groups what they thought of the professionals who support their children; what they would say to a room full of SENCOs and SEN workers, if they had the opportunity. The reaction to this was overwhelming and the responses fell into 3 distinct categories, which echoed my own thoughts.

Consider the parents

By far and away the most frequently mentioned and passionately   discussed point was that professionals must consider what parents think and want.  All families differ, some need more support than others, but the vast majority know their child better than anyone else.  After all, it is the parents who have sat up into the wee small hours researching their child's condition online, fuelled by worry, fear of the future and a desperate need to know that they are doing the very best they can.
It is they who have been the experts from day one. It is vital to involve and accept help from parents. SENCOs who recognise this have the most valuable resource at their finger tips.

"Realise that the parents are experts and be open to suggestions of new ways of doing things that have been successful elsewhere."

"I would like to be treated as the lead professional."

"I would ask the SENCOs to take 5 minutes to listen to the parents (very different from talking). I may not have any O Levels, but I want my child to go through school in the best way possible. This means being regularly involved in planning and forward thinking."

It is so important to see things from the parents' perspective sometimesand understand the pressure they can sometimes be under.  They live with the child's difficulties every day, they may not get much sleep, might have been through worrying episodes when their child was ill, hopitalised or undergoing surgery. At times this will take it's toll, and recognising this will go towards creating a better working relationship.

Teachers and SENCOs should take the time to look for potential problems within school, so that the parents don't always have to be the ones to mention what is not going to plan. Suggestions should be taken seriously the first time because as one father mentioned;

"By the time I raise an issue at school, it is because it is really important and because I have already let a lot slide. I will have been mulling it over for a very long time."

The Pupils' Advocate

"For inclusion to be successful, a teacher must provide for the needs of every child in the class and this includes children who have teaching assistants (TAs)." says SENCO trainer Angela Redman. "The teacher should work individually with these children so that they can fully understand them. Pupils will often work harder for the teacher and this also models how the other pupils in the class view that child."

Most parents realise that the role of a SENCO is a difficult one. They are employed by the school, report to a head of department and headteacher, and work within ever increasing time and financial restraints.  Primarily though, they work for certain children within that school, often some of the most vulnerable, and they are their advocates.

"Sadly, a SENCO's role is to run with the fox and bark with the hounds."

"First and foremost they should be an objective advocate for our children."

"As an ITU nurse, I attended a Critical Care conference each year, listening to survivors of disasters, so that we culd understand the trauma whn patients came in to us.

At the end of the day, I was the patient's advocate first and foremost as they are always the most vulnerable person in the room. It was my priviledge to keep that patient safe in every conceivable way at all times. I always considered them with the highest possible regard and if I had to lose my job to whistle blow I would.

To me, anyone involved in SEN should be the same."

Sadly bullying and disrespect towards SEN pupils can and does occur within schools and sometimes staff members are the perpetrators.  This could be a peripatetic teacher, a dinner lady or receptionist whose ideas are a little 'old school', so you need to be vigilant.  All staff need to be made aware of the school's Disability Equality Policy, and trained to follow it.

"Make sure all staff know that just because a child has additional needs does not mean they are a problem, just that you need to think differently and change your way of working."

SENCOs need to get out into the classroom and go on learning walks around the school. They need to spend time with the children with SEN, to assess needs and determine which advice servises and interventions to recommend.

One TA I have worked with summed up the SENCO role rather well: "An efficient SENCO would have the ability to promote effective teamwork. They should be aware of their team's individual expertise and have in place methods to deploy them across the school, ensuring teachers, teaching assistants, supervisory staff and parents have access to a higher level of support, and providing service users with a flexible, efficient and competent workforce. This dynamic approach to teamwork allows for the identification of gaps in provision and highlights areas for professional development."

Inclusion and Independence

We all know that school is not just about Reading, Writing and Numeracy, but sometimes it is easy to become lost in academic targets and assessment.  For SEN children, their time at school is  more about the long-term goal of enabling them to live in mainstream communities as independently as possible.

"A good SENCO will see this bigger picture and help their staff see it too."

"Our daughter will not finish school and live in a vaccuum. Our hopes should be that we can all enable her to live within the mainstream community. And for this, her experience at mainstream school is crucial. Inclusion at school will help her be included in her future, will help others learn to include her. Schools should see themselves as mini societies, enabling children to become good citizens.'

Another parent's comment encapsulates a common concern:

"Some teachers are used to measuring success in data and feel 'what's the point in helping this child who is so far behind?' They become frustrated that they aren't making more progress. They need to see that reaching small goals are worth such a lot, that they are helping a child to live an independent life."

Inclusion is a two-way street. Classmates learn as much from our children as our children benefit from being included alongside them.  I recently wrote a post about true inclusion as I witnessed it at a 5 year old's birthday party:

Inclusion: The Significance of the Birthday Party Invite

Conclusion

SENCOs have a difficult role, but they are in a priviledged position: they can make an enormous difference to the educational careers and future lives of so many. It is important that they get it right for our children.

This article appeared in SEN Magazine, March April 2013. 

Reader's Story - Tracy Awramenko

Tracy sent me the wonderfully encouraging story of her son Charlie. I love this picture taken of him at school. 

Charlie clearly loves school

• This is my youngest boy Charlie who is now 3 years old. 
  He is going to a special needs school and a mainstream pre school, both of which he loves. He has two older brothers who really look after him and adore him. 
  We are so proud of his little achievements, some many will think small but to us they are all big!! 
  He is a happy smiley little thing, who knows his own mind (stubborn like his parents), but he brings joy to all that meet and know him. 
  We cannot imagine life without him. 
  I love your facebook page. It makes me smile and gives me confidence that our family is not alone in the challenges we face, but those challenges are worth it xx