Special Needs Round-up

I am really enjoying collating my monthly round-up of Special Needs posts from some fabulous blogs many of which I am discovering through the linky below.  I am thrilled when people link up and it is what this round-up is all about.

I came across Zoe’s blog Tricky Customer for the first time this week and I am so glad I did. Zoe’s little boy Sam has the rare genetic condition ARX.  Often heartbreaking to read, Zoe explains that as the condition is so rare, most of the information surrounding it is very “text-book” and not parent-friendly.  Zoe’s has devised her own explanation which is wonderful. Please also pop over to her FAQ about Sam which are inspirational.  Zoe is turning 32 in May and in her post 32, she talks candidly about the priorities in her life since having such a special little baby.  I wept when I read her post but the anonymous quote she signs off with made me smile

“Life is short, live it. Love is rare, grab it. Anger is bad, dump it. Fear is awful, face it. Memories are sweet. Cherish them…”

Dear Luca is a beautiful blog written by Nicola and constructed in the form of letters to her son, Luca, who has a rare chromosome disorder.  Look at You is a wonderful letter within a letter in which we learn that Luca was awarded a special merit award at school.  The award was to be presented during a special assembly. Luca’s predicted reaction to the award made me smile.

Idiosyncratic Dad is an hilarious new blog on the block. Written by Spencer, father of 2 boys one of whom, after difficulties at birth, has Global Developmental Delay.  There are so few fathers who blog about their lives, and in particular fathers of children with special needs. Idiosyncratic Dad is a humorous take on the, well, idiosyncracies of his life. The school, the pizza and the strong chest made me smile, cry and then laugh out loud.  What more could you want from a post? (Spence also happens to be a new friend of mine, pop over and show him some Mum Blogger love).

Lynsey the Mother Duck has started a weekly spot on her blog entitled the Disability Diaries through which she conveys the reality of having a child with disabilities.  J1 has quadriplegic  cerebal palsy and it is Lynsey’s desire to highlight what life is like for someone with severe disabilities and for those that care for them.  In this week’s post she asks you to spend some time, even just a short time, to put yourself in their position.  I urge you to read Lyndsey’s other fantastic Disability Diaries posts.

Written in a similar vein is a brilliant guest post from Wendy of Savette Gazette on Vivien Sabel’s blog.  The post is written in the form of a letter through which Wendy addresses society’s perceptions of children with autism.  She attempts to show a brief glimpse of life with Autism and to show what ignorance her children face day in day out.

Stephanies daughter was diagnosed with a rare life-limiting genetic condition soon after birth. In addition her son has Asperger’s Syndrome.  Was this in the Plan???? is a blog about a life that has been turned upside down.

In her post This Mother’s Day I will be mostly….Stephanie explains she will be running a 10k race in aid of Shooting Star Chase, a hospice dedicated to palliative care and one that is very close to the hearts of Stephanie and her family.  This year marks 7 years that they have needed the assistance of Shooting Star Chase, a hospice which relies entirely on voluntary donations. So instead of breakfast in bed on Mother’s Day, Stephanie will be pounding the pavements of Mid Glamorgan.  Just the first of 10 races she will be doing this year.  You can sponsor Steph via Just Giving here www.justgiving.com/stephnimmo

I like this post from Autism Mamma (Jeanette) as it really struck a chord with me.  Jeanette can cope with many of the aspects of her daughter’s autism but in Manners cost Nothing she admits to finding one particular quirk hard to deal with.  Jeanette is a polite lady and is bringing up her autistic daughter with the manners to which she is accustomed.  However her daughter is often perceived as “rude” if she does not reply to a question or does not say “please” at the appropriate time.  I have exactly the same issues with Aleyna and it can be incredibly frustrating for people to think her, or worse I, rude.  Jeanette finishes by writing, “it’s not her fault – or mine, I’m doing my best, believe me”.  Yes you are Jeanette, you are doing brilliantly.

Which brings me nicely on to a couple of posts about Mother’s Day.

One of my favourites is this post by In a Bundance (great name) written by Ellen Arnison whose son has Asperger’s Syndrome.  Give yourself a pat on the back….you deserve it, talks about the pressure put on us by the media, celeb mums and more importantly ourselves, to be the “perfect mum”.  We are not bad mums, we are great mums.  Thanks Ellen.

The fabulous Ellen Arnison is also a speaker at BritMums Live!, yet another great reason to be attending!

I have decided on a couple of posts to finish with which should bring a smile to your day.  Steph from Steph’s Two Girls managed to get hold of JLS tickets for her autistic daughter.  She took a video of her reaction which is just fabulous.

And finally a post from Jonty Babe had me grinning from ear to ear. Jonty Babe’s daughter has special needs and recently the family have been waiting on some very important blood results for which there was concern it was something very serious.  Well Crack Open the Champers reveals that the blood tests came back as normal. Brilliant news. Pop over to Jonty Babe’s blog.  She is hilarious and a little bit barking!

Phew. That’s all for this month.

Please link up any posts to the linky below.  It is a great way to discover new blogs and friends.

Happy Mother’s Day

x

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