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Tag Archives: Cornelia de Lange Syndrome
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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Pity
I wrote this on Facebook yesterday (18.11.21). Seeing as I’ve neglected the blog for far too long, thought I’d add it here too. Bear with me, my people. Hope this makes sense. Here’s The Floret, looking fabulous in her new … Continue reading
Posted in Miscellaneous
Tagged ASD, Autism, awarenessmatters, Carers, CdLS, charity, children, childreninneed, cleftpalate, Cornelia de Lange, Cornelia de Lange Syndrome, Disability, disabilityawareness, learningdisability, Mummy blog, nonspeaking, nonverbal, parentcarers, PMLD, SEND blogger, special needs
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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
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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Oink Oink
So, Plan A: Take a short rest from the blog, free up some time, focus on The Book of Broccoli, get it done whilst ensuring I was 100% available for Hannah during her transition (I’ll get to that in … Continue reading
Posted in Education
Tagged ASD, Autism, CdLS, Cornelia de Lange Syndrome, Education, Family, Friendship, Learning Disability, Love, non-verbal, Parenting, PMLD, Rare Disease, School
4 Comments
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
Cringe!
Or, otherwise entitled… Fish, chip and ketchup confetti I’ve said it many times (and I’ll undoubtedly keep on saying it!)…parenting can be hard. Really hard. Add into the mix some additional needs and your parenting role gets a WHOLE … Continue reading
Posted in Miscellaneous, Parenting, Silly stuff
Tagged ASD, Autism, CdLS, Child, Childhood, Cornelia de Lange Syndrome, Disability, Family, holidays, Mummy blog, Parenting, Rare Disease, SEN, SEND, SEND blogger, SMC1A
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
my kid loves broccoli 