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Tag Archives: Family
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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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
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
Alpacalicious!
There isn’t much opportunity for the residents of Broccoli HQ to do anything spontaneous these days. Well, discounting stuff like spontaneously falling down, impulsively throwing yourself backwards with your eyes closed, biting and other generally hazardous shenanigans (btw, I’m referring … Continue reading
Posted in Miscellaneous
Tagged Alpaca, ASD, Autism, CdLS, Child, Childhood, Cornelia de Lange Syndrome, Disability, Family, Friendship, holidays, Love, Mummy blog, Parenting, SEN, SMC1A, special needs
4 Comments
Happy Birthday Hannah – 2018
Hello Tiger, Mummy’s been a bit lackadaisical on here, so I thought I’d write you a blog post, because – as if you didn’t know already – you’ve had another birthday. Hope you don’t mind me sharing this with everyone … Continue reading
Posted in Miscellaneous, Parenting
Tagged ASD, Autism, Birthday, CdLS, Child, Childhood, Cornelia de Lange Syndrome, Disability, Family, genetics, Love, Mummy blog, Parenting, Rare Disease, SEN, SEND, SEND blogger, SMC1A
4 Comments