Special Needs Round-up: Old, new, borrowed & true

 

special needsThis is my very first special needs round-up, and what an absolute honour it has been to be asked to take on the role. Compiling and writing such a potentially invaluable list of blogs, that have the power to help so many, has felt like quite a responsibility at times, but I enjoy a challenge and have viewed it has a huge learning curve. I have loved every minute of getting to know many bloggers better, and I hope you enjoy what I am about to bring you. Firstly I tried to define special needs to myself, in order to decide which blogs to look for and include, but the edges became blurred. So my round-up umbrella includes parent SEN blogs as well as those about children with more complex physical conditions or disabilities, and one or two surprises…

I decided to divide this month’s blogs into 4 categories;

The old

By which I mean blogs that I have been following for a while and have taken comfort and inspiration from myself. These 4 are written by amazing women (certainly not old!) that never disappoint. You may know them already, but if you don’t they are well worth following.

Renata B is the supremely beautiful mummy of a SWAN child and writes with grace and dignity over at Just Bring the Chocolate. This most recent post watchful waiting tells of that familiar feeling all parents of a medically complex child know of subconsciously always monitoring them from afar, whilst getting on with the realities of life, instinctively noticing the slightest subtle changes that could signify a deterioration or the onset of an illness.

Steph Nimmo is a passionate campaigner for childrens hospices and inspirational Mum of four. She write at Was This in the Plan???? about her gorgeous daughter Daisy who has incredibly rare Costello Syndrome and intestinal failure. She speaks in her latest blog faster, higher, stronger about how markers in time, such as the Olympics, have made her cast her mind back over the last 7 years. Time to reflect indeed.

Kylie Hodges is another immensely supportive blogger who describes her journey into motherhood with a premature baby at Not Even A Bag of Sugar. In another blog which nods towards recent Olympic events, she describes a routine with a premature baby as a preemie parenting pentathlon. As the mum of a little girl who spent weeks in intensive care, I can identify only too well with a lot of what she describes.

Claire Sarcone writes a brilliant blog called A Boy with Aspergers that I try to keep up with when I can. Her post this week brought a lump to my throat. She describes the bitter sweet experience of hearing her son’s diagnosis officially recognised some years back in your son has Asperger’s Syndrome and talks about how far they have come.

The new

These are blogs that I have stumbled across recently myself. They are either new, relatively new or just new to me. I hope you will enjoy visiting them and giving them your support.

Tom is a new Daddy blogger who writes honestly, openly and with such obvious love over at The Future’s Rosie. His muse is his daughter Rosie, who has Down’s Syndrome. He aims to bust common myths about the condition, and in his latest post things I’ve taught my daddy he shows just how Rosie has done that for him. It’s worth a visit just so see her gorgeous little smile. I guarantee she will put one on your face too!

Candi OReilly is an accomplished blogger at Looking for Blue Sky, but I only had a chance to explore her blog for the first time last week while I supped a chai latte in an unexpectedly pleasant cafe next to where I was getting my car MOTed. I felt as if I was sharing a coffee and a chat with her on that brown corded sofa, because her writing is so warm, familiar, friendly and with touches of humour, that I felt I had know her for ages. She has 3 delightlful children, one with Aspergers and another with Cerebral Palsy. In why I don’t get up until lunchtime at weekends  she describes a typical Sunday morning with the family. I too have not had a full night’s sleep in years, so can sympathise with that side of the equation.

The last new blog to enter my world this month, and there are more daily, is by Jeanette who writes Autism Mumma (Jeanette). Her post anxieties and edward scissor hands tells us what they are doing during their summer holidays and how they are coping with its ups and downs. I love the beautiful photos of the crafts she intertwines as she urges us all to look beyond what might at first sight appear to be a naughty child, but is probably one suffering a melt-down.

The Borrowed

By which I mean ‘not quite a blog’ in the typical sense.

The first is run by a lady who works at Little Angels special school, we met on twitter and I have found her advice indispensable ever since. Her ‘not quite a blog’ is her Pinterest boards, which list every conceivable nugget of information that an SEN parent might need, from iPad apps to blogs, to OT equipment, all in a highly visual and easily accessible format. If you are a SEN parent, you should visit this page post haste.

The second ‘borrowed’ contestant is a mum blogging for an organisation rather than her own site. She writes for ERIC (Education and Resources for Improving Childhood Continence) and her post no bog standard about their campaign for better toilet facilities within schools is one that will be close to many parents’ hearts.

The True

Last, but by no means least, I bring you a little sneaky cherry to put on the top of this delicious cake of a round-up. Not parent bloggers, and one isn’t British, but amazing and therefore worth showcasing. They are two young adults who have started websites to write about their experiences of walking the very path that is the subject of our parent blogs. They are the bloggers who have additional needs themselves. I found them both so inspirational that I simply had to include them.

Kajsa is a charming young Swedish woman who has Down’s Syndrome that I have had the great fortune to meet. She was in fact a neighbour to a friend we were visiting in Sweden a couple of years ago. Her family welcomed us warmly into their home and we were treated to a table bursting with treats and Kajsa singing us opera. This is just one of her many talents, she is also bilingual and plays the piano beautifully. I was so overcome with emotion that I ended up crying in front of these strangers. Her mum instantly saw this as an expression of my relief, that anything is possible for children with Down’s syndrome. See Kajsa’s beautiful photos and videos on her site

A second inspirational young blogger is Paul, who’s aim is to educate us all about Lowe’s Syndrome. Paul leads a very full life, socially and at work and it’s wonderful to follow his stories as he learns to drive or celebrates his birthday. You can visit Paul’s site Living with Lowes or follow him on Twitter where he often posts photos of his adventures.

 

Oh, and what have I been up to this week over at Downs Side Up? Well, mostly a little light-hearted observation into how chicken husbandry can help children with additional needs. Chickens really are eggsellent teachers.

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About Hayley Goleniowska

A former language teacher and voice-over artist, Hayley is now the Mum of two gorgeous girls, the youngest of whom, Natty, has Down’s Syndrome. She blogs, speaks and writes articles on the subject for all who will read or listen.

Through Downs Side Up she aims to both offer support and encouragement to new families with a diagnosis, and gently change perceptions of Down’s Syndrome from within hearts through beautiful words and photos.

Her daughter Natty is a clothing model and an amazing ambassador for children with disabilities everywhere. She has appeared in The Sun, Mail Online, Bella Magazine and on ITV Daybreak.

You can find Hayley on Twitter, Facebook and Pinterest.

19 Comments

  1. 18 August 2012 / 20:22

    Well done Hayley. Have not yet visited the posts recommended but will do so over the next week.
    Love your creative approach and enjoyed looking at your profile too.

    • 20 August 2012 / 10:10

      Thank you for taking the time to look Kate. I so wanted to get it right as I have large shiny shoes to fill.
      Much love and thank you for your support x

  2. 18 August 2012 / 21:53

    Thank you so much for your kind words, Hayley. This is really informative article. Well done.

    • 20 August 2012 / 10:11

      Thank you for all your help over the last few months. Your Pinterest board really is second to none x

  3. 18 August 2012 / 22:27

    Hayley, I feel priviledged that you included me, especially as things are too difficult to write much at the moment. That is quite possibly… no… undoubtedly the best and most thoughtful round up I’ve read- and I’m not just saying that because you included Just Bring the Chocolate!

    • 27 August 2012 / 15:41

      Such high praise Renata, thank you. Thinking of you all. I love reading your exquisite posts, they are always a rare treat 🙂

  4. 20 August 2012 / 10:07

    Great post Hayley! I’m a parent, writer and home educator and just wanted to let readers know that some parents have found that home educating children with special needs has proved a lifeline when school became so difficult. Home education is a really workable option and an alternative that many parents are turning to when schools don’t suit their child’s needs. There’s more info on my site if anyone needs it and there are many other bloggers now illustrating how well it works. Best wishes and thanks for the post.

    • 20 August 2012 / 10:12

      Ross, that’s wonderful. I will take a look at your site, which I look forward to reading, particularly as I am going to begin home ed 1 day a week from September. Keep up the good work.

  5. 20 August 2012 / 15:06

    Thank you for posting this article, As a mum of 4, 3 of whom are on the autistic spectrum, I shall be reading all the blogs you mentioned with interest.
    Lisa xx

  6. 20 August 2012 / 20:11

    Hi Hayley,
    Congratulations on a fantastic post. I have heard of one or two of the blogs that you talked about in this post but there are definitely a couple that I will be having a look at in the future.
    My particular favourite has been Just Bring the Chocolate as I am also the father of a SWAN child and that blog got me started writing mine. I also make sure to keep up with your blog on a regular basis too and, although I have been mainly a ‘lurker’ in the past, I promise I will start to take part a bit more 🙂

    Well done on a great post!

    • 23 August 2012 / 22:58

      Thank you! Yes, Renata is amazing.
      Look forward to chatting more Keith, be a lurker no more 🙂

  7. 20 August 2012 / 21:32

    This is a brilliant post! I am aware of some of the blogs you’ve linked to but since reading this I’ve followed a few more on twitter and begun reading some of their really posts. All really inspiring 🙂

    Great stuff xxx

    • 23 August 2012 / 22:58

      Thank you. Glad I’ve highlighted some new ones for you.

  8. 23 August 2012 / 20:56

    Haven’t had much time to keep up with blogging lately; roll on Back To School so I can sit down with a cuppa and enjoy, and write more! Have got through all of these now, so thanks for the round-up – quite a few ‘old’ loved ones for me there 🙂

    • 23 August 2012 / 22:59

      Yes, I know the feeling. No time to write at all. Glad you liked the round-up though x

  9. 23 August 2012 / 22:43

    As I am on the ipad now, can’t do the linky, but do visit my blog as well, as I write about autism among many other things. I recently did a post called The fragmented world of Sasha.

  10. 23 August 2012 / 23:00

    I certainly will visit your blog. Thank you.

  11. 11 September 2012 / 11:10

    I’ve just realised that I forgot to thank you for this lovely round up x