Five Firsts I will Never Forget for #LDWeek14

Which firsts do you remember from your child's early years? 

First tooth, first haircut, first word? 

Do you keep evidence of them all, the teeth, the lock of hair, the words written in that little red book the Health Visitors give you? I have all of those precious memories from both girls stored away in a tresure box that is bursting at the seams.

Each year Mencap encourage us all to pull together for Learning Disability Week, a time to share information, campaign together and celebrate achievements. This year is is no exception, and the cleverly-chosen theme for #LDweek14 is 'firsts'.

Little did I know when I agreed to take part with a blog post, that it would prove such an emotional experience. Here I sit browsing through old photographs, looking for visual evidence of Natty achieving things for the first time, moments in time captured, and I am reminded just how many of those occasions we wondered if we would ever see. 

We dared not hope for any of them when she was born, for we weren't even sure if she was strong enough to survive in the beginning. Natty has Down's syndrome and was born with a heart condition that left her blue and reliant on oxygen and an incubator in neonatal intensive care for several weeks.

So this exercise has been a stark reminder in not taking your child's achievements for granted, in celebrating even the tiniest of successes, in accepting them for who they are and encouraging them to reach their full potential, whatever that means.

As I sit, with a tear of pride, and a heart that becomes heavy recalling some of the hurdles our precious daughter has faced, a cup of hot tea in hand, I am proud to share with you just a few of our little Natty's memorable firsts:

First Taste of Breast Milk and Kangaroo Care

Natty was quite simply too tired to feed as an infant. Expressed milk was fed to her through a naso-gastric tube for three months after which time she learnt to do it for herself. Her first real accomplishment.

This picture is so significant as it shows her very first taste of breast milk from a syringe at about 3 days old. It was also the first time we tried Kangaroo Care which is skin to skin contact, so enormously beneficial to premature and sick babies.

I recall a cardiac consultant arriving at this moment, scanning machine in tow, and a kindly neonatal nurse firmly asking him to come back in half an hour, for she knew the immense significance of this moment.

Showing Interest in a Toy

With all infants there is a period of time before they learn to smile or take an interest in the adults and things around them, but with Natty I recall this seemingly going on forever. Thinking back I guess I was afraid that she might never engage with her world.

The Portage service were amazing at this stage, and came to the house weekly, bringing toys and ideas for exercises for us to do together. It was also a chance to have a coffee and a chat with a familiar, smily face who understood the period of adjustment we were going through.

This photo shows Natty with a loan toy that was the first thing she ever reached out for and actively chose to play with. It span and wobbled and played a tune from memory, although I might have made that bit up...

Teasing Medical Staff

This photo was taken within hours of Natty coming round from her keyhole heart surgery. She's wearing her 'My heart was fixed...' T shirt.

Those of you who have been through similar with your little ones will understand the phyical weight of worry, the sheer terror of waiting for your child to return to you after such a procedure. The photo takes me straight back there and my chest begins to tighten as a remember every little detail that I had boxed away in my mind.

We went to Bristol Children's Hospital and paced the street while we waited for the call to return, the call to say our youngest child was safe. We were at her side when she awoke and then Daddy held her on his chest while she dozed off the anaesthetic. None of us spoke, too afraid. Wondering if the surgery had worked, if the operation had been a success, hoping there were no ill effects.

Then her surgeon appeared, doing his ward round. Natty looked up, turned to him and blew the most enormous resounding raspberry at him. Our cheeky Natty was back, with vengeance, and oh so cleverly she broke the tension in the room and made us all smile once again.

Writing Her Own Name 

These photos show a proud and happy time for all sorts of reasons, as they were taken when Natty 'graduated' from pre-school at four years old, ready to begin in reception. An anxious time of transition for any parent but it couldn't have been done with more care and attention to detail.

We arrived at the graduation ceremony venue and took our places in the audience. The children came in, sang songs and then took turns to receive their certificates and wear mortar board hats that they had made. My eyes didn't leave Natty for a moment and I strained to see the pattern on her hat. All of a sudden I realised that it was writing... HER writing... her NAME! Tears flooded our proud faces.

Natty had drawn over dots that made up the word NATALIA. It had apparently taken much time and several attempts, but the staff had believed in her and had persevered. WE couldn't thank them enough.

Swimming a Length Unaided

This event needs a blog post all to itself. It was a truly miraculous moment that I didn't capture on film as other children were present in the pool. It happened recently and all I shall say is that involved Natty, who has been swia few strokes at a time with out floatation devices, gatecrashing a swimming lesson. She watched her peers carefully and thoughtfully before launching herself into the water and swimming first a width of perfect front crawl and then, ten minutes later, a whole length.

More tears, and this time they were from the teacher and other parents as well as me!

The Sky is the Limit

What these milestones prove to me is that we must never set limits on what our children will be able to achieve. If the sky is the limit for them, then the firsts will keep on coming...

Hayley Goleniowska: proud Mencap Mumbassador

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.

Natty's breakthrough moments: writing, sewing, staying dry

Does your child go through times when development stops still or even seems to regress? Are they then suddenly able to do several new skills all at once? We've just had one such Eureka moment with Natty.

She is a visual learner, as most children with Down's syndrome are, and she watches, waits, practises quietly and independently in her own time and almost seems to want to be sure of absolute success before she demonstrates any new trick. Perhaps she is afraid of getting egg on her face! Or maybe this is a trait other children and young people with Trisomy 21 share?

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.

Home Education Day: Fruit and Veg

I know that many of you are interested in what we have been doing during our one flexi-school day at home each week. It's going really well and Natty and Mummy are enjoying quality time to enjoy learning together.

I thought you might like to see what we got up to last week...

The topic being covered at school was Healthy Eating and Fruit and Vegetables so I planned a series of activities that covered science, reading, writing, literacy, numeracy and life skills using this topic as an umbrella.

1) We took a shopping bag and went around the kitchen collecting as many fruits and vegetables as we could, including fresh, tinned and dried varieties. We said the names of each aloud. Natty loved putting them in the bag and heaving it around, shouting 'ooooh, heavy'.

2) I spread 2 bath towels down on the floor and labelled one fruit, the other vegetables. Natty and I said each word, then I spent a while shouting out the words while she jumped to the appropriate towel, pointing to the right word. I made a huge fuss of her for being able to read the words 'fruit' and 'vegetables'. What a proud girl :)

3) We took the fruit and veg out of Natty's shopping bag one at a time. This time I encouraged her to remember the names of each item. She needed help with a few and we used Makaton to back this up. We talked about the colour of each item too, again using Makaton as reinforcement where necessary.

4) I encouraged Natty to decide if each item was a fruit or a vegetable and sort them.  There were multiples of some. This was a challenging task, so I helped by saying that fruit are 'sweet and juicy' and that we generally 'cook vegetables'. I added a fruit bowl to the fruit towel and a saucepan to the vegetables one as a visual prompt of this.

5) We moved on to our numeracy task, using our home starter kit of Numicon. This is an invaluable sensory, visual system that uses colours and shapes to represent each number. Natty found 1 tomato, 2onions, 3 carrots, 4 grapes and 5 potatoes and so on. We set them out on the floor in order and then Natty matched the numeral and the Numicon shape to each number set.

6) After a little break and a healthy snack of one of the bananas and some grapes, Natty and I went back to the kitchen to prepare a homemade vegetable soup. We took all the vegetables from the first activities. Natty washed her hands and put on her chef's set. I went to Spotify to find some vegetable themed songs to play (there were scores of them!) and off we went. I was very nervous about Natty using a serrated knife to chop, but she did very well with guidance although my heart was in my mouth the whole time. You know your child and what they are capable of. Always supervise such activities closely.
Natty then poured in the liquid and stirred while dancing.

The amusing moment Natty remembered she'd taken off her apron earlier!

7) We tidied up and had some lunch and then began our writing practice. We wrote 'a' 's' 'p' and 't' in plates filled with oats and dried beans, then on each other's backs, in the air, on the floor. We wrote the letters on paper (Natty finds a rubber pencil grip helpful for pencil control) using the Ruth Miskin ideas for formation ('a' round the apple and down the leaf...), firstly tracing over dots and then freehand.

8) Time for a quick burst of literacy practice. We went through the flashcards in Natty's current book (one from the Oxford Reading Tree series), then matched the cards to the 'same' words in the text. We then read the book and talked about the story.

9) And we still had time for a swim before going back to school to collect Mia :)

Mummy was shattered and in bed by 9pm!