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Category Archives: Syndromes/Special Needs
FEEDING TUBE AWARENESS WEEK
I couldn’t let the week go by without doing a post, especially as The (baby) Floret was fed by tubes. I’ve written about this before and mentioned that, initially, it was a scary thing to do. My mum (a former … Continue reading
Book: Cornelia de Lange Syndrome – A shared journey
Hello! Happy New Year and all that. I have some exciting news for you. Well, you may already know if you follow us on Facebook, but I’m sharing in case you didn’t. There’s a new book recently published called Cornelia … Continue reading
Posted in Education, Syndromes/Special Needs
Tagged #blogger, #book, CdLS, cdlslife, cdlsstrong, Child, Cornelia de Lange Syndrome, corneliadelange, Disability, Family, genes, genetics, health, lifewithcdls, livingwithararesyndrome, Mummy blog, mummyblogger, mykidlovesbroccoli, Parenting, raredisease, SEND blogger, sendblogger, smallbutmighty, special needs, strongertogether, syndromes
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CdLS – Facts matter
Hello there! Apologies for the radio silence, I’ve been busy (mostly procrastinating really) and neglected the blog. My bad. But I’ve popped on today to have a bit of a ramble and share something very important to me…and to lots … Continue reading
Posted in Syndromes/Special Needs
Tagged #CdLS, #corneliadelange, Cornelia de Lange Syndrome
2 Comments
Stop the clocks
Well Tiger, change is afoot and I feel the need to document it. Whilst we’re all prepared, I’ve got very mixed feelings right now – flitting from optimism to dread – as tomorrow I’m having to let go of you … Continue reading
I See YOU! – The 2020 update
Some years back now I wrote a post called “I see YOU”. It turned out to be quite popular and seemed to resonate with other parents. Since then, I’ve seen very similar posts shared across social media. And I’m okay … Continue reading
Posted in Parenting, Syndromes/Special Needs
Tagged ASD, Autism, CdLS, Child, Childhood, Cornelia de Lange, Cornelia de Lange Syndrome, Disability, Family, genetics, Love, Parenting, Rare Disease, SEN, SEND, SMC1A, Support, syndromes
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The 10 Year Challenge
I’ve noticed these 10-year challenge things floating around on the interweb recently and thought I’d use a similar theme for a blog post. However, mine won’t be a “Ooh, look at us! weren’t we fabulously glamorous then…and we haven’t changed … Continue reading
Posted in Miscellaneous, Parenting, Syndromes/Special Needs
Tagged ASD, Autism, Carers, CdLS, Child, Childhood, Cornelia de Lange Syndrome, Diagnosis, Disability, Family, Friendship, genetics, Love, Mummy blog, Parenting, Rare Disease, SEN, SEND, SEND blogger, special needs
4 Comments
Terms and Conditions
Or, otherwise entitled… PACT-G Once upon a time; many, many moons ago, my parents bought me a piano. It lived in my fathers study and alongside the weekly piano lessons, I was advised that I was expected … Continue reading
Posted in Education, Miscellaneous, Parenting, Speech, language and communication, Syndromes/Special Needs
Tagged anxiety, ASD, Autism, Carers, CdLS, Child, Childhood, Cornelia de Lange Syndrome, Diagnosis, Disability, Education, Family, Love, Mummy blog, PACT-G, Parenting, Rare Disease, Research, SEN, SEND, SEND blogger, SMC1A, special needs, Success, Support
3 Comments
Invisible child
This needed to be written today. I’ve no idea why. Hope it makes sense. Here goes: A client A case A patient A statistic A budget A diagnosis A Service user A name on a database And to some, … Continue reading
Posted in Miscellaneous, Parenting, Syndromes/Special Needs
Tagged ASD, Autism, Child, Childhood, Disability, Family, genetics, Love, Mummy blog, Parenting, Rare Disease, SEN, SEND, SEND blogger, special needs
4 Comments
Let that sink in
There’s a Facebook post that seems to have been doing the rounds recently. I can’t recall word for word, but it goes something like: Remember how hard it was caring for a newborn? Many parents of kids with additional needs … Continue reading
Posted in Miscellaneous, Parenting, Syndromes/Special Needs
Tagged Additional needs, ASD, Autism, CdLS, Child, Childhood, Cornelia de Lange Syndrome, Disability, Family, genetics, Love, Mummy blog, Parenting, SEN, SEND, SEND blogger, special needs, Support
10 Comments
The “They” Gang
Yesterday was #InternationalDayOfHappiness and, as a result, I posted a couple of things on Facebook. …this post is inspired by one of them. (Warning: Just so you know, I might get a tiny bit Mrs Ranty McRantipants…but … Continue reading
Posted in Miscellaneous, Syndromes/Special Needs
Tagged Autism, CdLS, Child, Cornelia de Lange Syndrome, Disability, Education, Family, health, Parenting, Rare Disease, SEN, SEND, SEND blogger, SMC1A
4 Comments
my kid loves broccoli 