2018 has been an amazing year for me. I launched my website, I started the autism aware bears, we have had so much family time, days out, weekends away and of course our very first holiday abroad, none of which we thought would be possible when Isla was diagnosed with autism because professionals told us she could not cope with any changes and would need a rigid routine and structure basically forever – they were wrong.
This got me thinking about the little things, the things people often take for granted but are actually a big deal to parents like me and to people who themselves have additional needs or disabilities. The things most people don’t think twice about but we want to tell the world about. I got thinking about all the hopes and dreams, the expectations and the reality of raising a child with SEND and how each year has seen so much change for us.
I am lucky enough to have some amazing friends who are also SEND bloggers and so I lassoes them what their highlights of 2018 were, what was achieved and what lessons or words of wisdom they could pass on to take in to 2019.
Here is what they shared:-
Autism Mumma http://autismmumma.com
“It’s been an immensely trying year for me, I absolutely hate that I’m ending the year with dehabilitating nerve pain and facing another operation next year but – moany moment over – I am mega proud of T for studying hard for his mock GCSEs and turning things around after being influenced by some classmates and the challenges he faces in mainstream secondary with some staff who just don’t “get” autism.
D surprised me with her playing the keyboard in a SN school performance, she taught herself and they kept it as a massive proud tears surprise for me!
I am going into 2019 grateful for getting over sepsis and the sudden challenges that brought my family”
Mama unexpected https://mamaunexpected.com
“Mine is fairly obvious hey! Diagnosis year ❤️ Ummm… my plans for 2019 are to spend more time with my loved ones and continue to campaign for better newborn screening.”
Mummy est 2014 www.mummyest2014.wordpress.com
“The most amazing thing about 2018 was getting pregnant with our rainbow baby. I was anxious how J would deal with it as he is autistic and doesn’t deal with change well, and can also be very physical. However he has coped really well and is so caring already (few difficult moments and bumps to bump). So 2019 will be the year I give him a little brother and the fun really begins haha.”
David B’s journey www.facebook.com/davidbsjourney
“David learned to use a swing which is huge given his arthritis, low tone, hyper-mobility and GDD. What am I taking in to 2019? That health is wealth and love and family are everything”.
Ojo’s World https://www.Facebook.com/ojosworld
“My advice for others, going into the next year : be kinder to people. Just because someone isn’t vocal about their problems, doesn’t mean their life is easy”.
A wheelie great adventure https://www.facebook.com/awheeliegreatadventure
“Highlights of the year, taking the Changing Places campaign to Downing Street, Parliament and the Department of Health. Hopes for 2019 – that the day will come when campaigners no longer have to fight for toileting rights”
You can still sign the petition http://bit.ly/toilets4all
Living with blooming autism https://bloomingautism.com
“Eliza moved class mid term because she’d outgrown her other class academically. She’s learning piano, reads 2 years older than her actual age. Oh and in under 8 weeks learnt to play a brass horn and take part in a concert in front of parents. Not bad for a girl that was told she’d pretty much be nothing by professionals when she was 2. We’re just going to be ourselves in 2019. Tired of being what others want or expect us to be. Anxiety won’t beat Eliza, she won’t let it. It’s certainly won’t beat me either. We’re all going in to the new year with positivity and hope but no demands or expectations. We’re going to be us and we’re going to love life as much as possible”.
“It wasn’t a good year here so not able to give a lot of hope. I spent the first two months on crutches after a car accident then Isaac was very ill for months before being diagnosed with epilepsy. My husband’s depression has got to the point he isn’t allowed to be left alone with the kids now but I did start swimming and lost a stone in weight! ‘this too shall pass’ was what got me through the car crash, Isaac in and out of hospital and watching him have seizures so I’ll be taking that in to 2019.
Steph two girls www.stephstwogirls.co.uk
“Sasha got her place at the new school at Easter this year after 8 months out of school and I’m amazed because she has said she will go back in January when I really didn’t think she would! Of course, it’s not happened yet…! Yesterday was a huge success for us, all going ice skating as a family. Going out together happens so rarely for us now. But I’ll never give up hope, we will take that into 2019 and know that we need to go with the flow at any time and not worry about the future”.
First time valley mam https://www.facebook.com/firsttimevalleymam
“We got Z toilet trained day and night! That is the biggest achievement for us. Lots of new words and he’s learning to use one word to request, ok that’s only toilet, toast and drink right now”.
Ethan’s stars https://www.facebook.com/ethansstars
“Well we’ve had a mixed year but the biggest thing was ethan becoming a big brother again and next to that is finding out my boys got balls, for us to send him into theatre thinking there was nothing there and that they may have to remove what was there if it wasn’t big enough, to him coming out after a successful “pull down” to find out there were testicles there and he could do puberty on his own was amazing for all of us!! In 2019 I will be taking life one step at a time, adding in some self care to help us have more fun as a family”
A life less ordinary with autism https://alifelessordinarywithautism.wordpress.com
“We’ve had the best year! The boy started school in January and has come on leaps and bounds. I set up a local page for SEND Socials and have met the best people, I’ve been elected as Parent Governor at my sons school and I’ve been working on a really exciting project I hope to bring to life next year. The only thing I am a bit sad about is after today I will never, ever be able to say “I had a baby last year” again!”
Autistic not weird http://autisticnotweird.com
“Giving a talk at the Sydney Opera House was pretty good (I grew up with a developmental delay and was in speech therapy at the age of four due to expressive language of a two year old at the time according to reports) and winning an Autism Hero Award. I met Miriam twice- watching Isaac Google Street View his way back to my hotel despite having never been there before, and Naomi a few months later selling books to the public at a stall were some highlights.
Good year, all in all. Lost two months of it to anxiety, but that’s not the part I’ll be looking back on”.
A Hunters Life – MPS II http://hunterslife.co.uk
” Highlight has to be moving house and coming to a better acceptance of my Pudding’s life-limiting diagnosis. Lots of medical stuff coming up in the new year which is never easy but right now I think I can cope better than I have done”.
It’s a Tink Thing https://itsatinkthing.com
“Tink has made amazing progress with her speech and has just started to read too!”
The SEND Parents handbook http://www.yvonnenewbold.com
“There have been so many amazing moments this year and the SEND VCB Project VCB stands for Violent and Challenging Behaviour) has really taken off and achieved so much more than I could ever have imagined possible. Toby is doing incredibly well, he is living in a residential care home where we’ve struck gold in how happy he is. Every day I wake up and that the heavens for him landing on his feet. He’s been there over 3 years now. I’m still alive and I never expected to be. It’s now nearly 6 years since the cancer spread and became Stage 4 which is terminal. Back then I was given 2 years to live so I’m well on borrowed time and trying to pack as much in as possible. SEND VCB is on the map. 2 years ago it wasn’t ever discussed, completely taboo and swept under the carpet. This year the profile has been significantly raised which can only be great news for affected families. I’ve been on TV and radio talking about it – to be getting mainstream coverage is incredible. I’m so proud of the Research Project we’ve undertaken – the very first academic qualitative study into the impact on families when there is a child with an additional need who is also violent. About 120 families took part, we spend 7 months designing the study and we used FB to do it. We asked families 15 relevant questions, and their collective replies were 220,000 words long. That is three paperback books if we just printed them all end to end. The analytical work is nearly complete, the Northumbria University team have been a joy to work with, and results should be out next month. I’m now able to offer 4 different workshops looking at different aspects of SEND VCB, and I’ve been invited all over the country to deliver them. Best of all, as a direct result of this work, there are now dozens of families who have been virtually able to put their child’s behavour behind them. My main FB page, The SEND Parent’s Handbook, reached the 20,000 followers milestone. The SEND VCB closed group has grown from 600 members last December to 2,600 members this year and it’s thriving. I also launched another page The SEND VCB Project and I’d have loved to have reached 2,000 followers by today but sadly we’re still just over 100 short of that. Receiving a lovely award – The Learning Disabilities and Autism National Lifetime Achievement Award 2018 was incredible, and meeting Sally Phillips who told everyone she wants to stalk me until I’m her new best friend! How can next year possibly be better than that, eh? Well, I’m gonna give it my best shot!”
Starlight and Stories www.starlightandstories.com
“2018 has been huge for us, the Bear starting secondary school was an unexpected highlight. Despite all our worries, she has never been happier. On a personal level I also managed to write and publish a book, something I’ve been meaning to do for the last ten years”.
Our Altered Life http://ouralteredlife.com
“So many amazing moments in 2018 ~ setting up my charity and being gifted a week in the Lake District for the family after some fundraising. A gorgeous family holiday in turkey which Harry coped with really well and winning Carer of the Year award was pretty special for me. I have also loved being a part of the SEND bloggers group. When Harry was born I really didn’t want to be a part of the SEND community, now I love this tribe and am so grateful everyday for everyone’s support and understanding.”
Huge thanks to all of the SEND bloggers who took part.
As for me…. What am I taking in to 2019?
The knowledge that anybody can achieve anything, impossible doesn’t exist (even the word itself says I’m possible), that family are worth more than all of the riches in the world and that no matter how negative things appear, there is always something positive to take from it, if you look hard enough!
Happy new year everyone!