T21 Hub Update

Hellooooo it’s been nearly two months since I last wrote a blog so I have chose to give you an update as I’m feeling aware of my lack of productivity. As a recent finalist in the Mums in Business Blogging Award, this is ridiculous. I started to question why I haven’t actually completed a blog recently; there have been several half written from ‘Why I chose Special School over Mainstream’ to more recently ‘Why I Chose to Self Distance Early’ but I’ve not completed them; so today I give you a T21 Hub Update.

MIBA Blogger Finalist

Earlier this year I started to question, panic and feel completely at a loss about what I should, shouldn’t be blogging about. In the haste to have more views on my blog and understand more about SEO and google I got caught up in the world of learning and not doing. I got caught up in the world of Imposter Syndrome (why would anyone read this) and I got caught up in the world of I’ll do it tomorrow; as we all know tomorrow never comes.

Updates as I haven’t been doing nothing I have been supporting the awesome charity Wouldn’t Change a Thing with their twitter account. I have been supporting the amazing local Bury Parent Forum Group Bury2Gether to create and support more inclusive events on top of my roles with the fastest growing online women’s community group Mums in Business Association as both local coordinator for Prestwich and Bury and as their Social Media Manager.
Update, whilst I didn’t win the MIBA Blogger Award I did win the MIBA Pay It Forward Category, yay!
Busy!

Update, I did win one award!

I have still continued to raise awareness and share resources for Down Syndrome via my daughters page Ellie’s Secrets and this always be my number one priority. However I have found a love for social media over the years and have recently started to share what I have learnt with others. I have set up a new Facebook group to support other carers who are working to understand social media platforms so they can increase their awareness See SENse and over the coming months I’ll be sharing more resources with you all. Feel free to contact me if you would like to know more

And that my friend is my update!
My final thoughts to you all and to share what I have learnt recently and given unprecedented times with the Coronavirus are
– Don’t put off doing what you need to do
– Relax, aim for your best not perfection
– Go with your gut instinct at all times, it’s often right
– Ask for help then take the advice (don’t ask it from everyone though, it’ll get conflicting)
– Be yourself, learn daily; don’t aspire to be someone else
– Be kind to yourself and if you’ve got through the day, you’re winning at life!

Thanks for reading, I would love to know how you are right now and I will be back sooner rather than later
Until Next Time
Sharon x

What is Down Syndrome – A Mum’s Opinion

What is Down Syndrome? There are many articles, websites and support groups on social media that can tell you the science, the facts and the up to date information of what Down Syndrome is. Here I share with you what I think it is in my own words, a mum’s opinion.

Only ten years ago I personally had never heard of Down Syndrome. When I received the diagnosis hours after Ellie was born it was met with a checklist and nothing positive. I cried, I cried not even knowing what I was crying about except I knew my daughter was disabled. The literature given to me to read was (now I know) out dated and weighed heavily towards the negative impact of ‘what could happen’ to Ellie.

You may have seen this literature yourself, you may in your own head know exactly what I am talking about; poor eyesight, heart problems, late learning, delayed speech to name a few. To read more about those earlier days do read my earlier blog. Today I wonder how other parents would feel if they got something similar, your child may grow up to be a murderer, a drug addict (you get the picture) and it was the word ‘may’ and the reason for this is all children with Down Syndrome are unique. Yes they may have to wear glasses, but there again they may not.

I truly wish I would have seen literature that stated your daughter ‘may’ be an actress, ‘may’ become a model, ‘may’ become a public speaker. It would not have felt so scary and that is why there are many communities and charities changing this by providing new parents with positive information and educating those in the profession how to support in a positive way. A community I am part of Wouldn’t Change A Thing are making this happen and have recently published a book to support new parents.

Wouldn’t Change A Thing
A book to raise awareness of Down Syndrome

So without the science and the facts, what does Down Syndrome mean to me, a mum ten years on and the simple answer is nothing. Ellie, my daughter, is Ellie, a young girl that enjoys music and dancing, loves her Ipad, has close friends, attends swimming and can sometimes be seen enjoying playing with her brother. I don’t see the disability or the label and whilst I can say that this wasn’t the case at the beginning, it sure is now.

To new mums and dads, however you are feeling reading this, it’s fine. Your child will grow up like everyone else and whilst I don’t want to paint a false rose tinted picture because your child will be who they are meant to be with your love, your encouragement and your family.

To mums and dads with primary school aged children, I hope this helps you and your children to see the person first and understand that nothing is more important to a child with Down Syndrome than being included.

I hope you have enjoyed reading this and please do comment if you have learnt something from this. If you would like to get in touch with me for any Down Syndrome advice or support please do reach out here

Until Next Time
Sharon x

Language and Terminology with Down Syndrome

I start this blog by expressing that the words you read are my own independent views and that my only expertise here is to have raised a daughter (who is currently 10yrs old) with Down Syndrome. I have wanted to write blogs in this way for so long but have stopped myself for fear of judgement from others; but no more. If I can help educate just one person with this blog then I have succeeded in what I set out to do.
I personally believe that the language and terminology used when speaking about a person with Down Syndrome is so, so important as it is with any disability or learning difficulty.

So let’s begin with two definitions.
According to google
Language is

the method of human communication, either spoken or written, consisting of the use of words in a structured and conventional way.

Terminology means

he body of terms used with a particular technical application in a subject of study, profession, etc..

Therefore when speaking or writing about a person with Down Syndrome, to me as a parent, it is extremely important to use the correct terminology.
I expect my daughter to be treated with the same respect and dignity as I would hope for all of my family. You may have heard of the saying ‘person first’, but what does that mean to you? Quite simply the person should ALWAYS come before the diagnosis.
Please, please do not use Down’s child, Down’s or the disabled kid please use the prhase ‘The child with Down Syndrome’

To see some other common phrases that can be used easily enough, I have put together a download (keep reading) and used a great poster from the Down Syndrome Association which has a wealth of information.

Using incorrect terminology can not only be seen as politically incorrect but can also be taken offensively. I personally cringe when I hear it and hope it is due to lack of education rather than someone being unkind; hence why I choose to continue to raise awareness (with so many others) so that we can all learn from each other. I personally had never heard of Down Syndrome before I had Ellie, read my account of this here so I do understand that we don’t all know everything and we can all learn from each other.

Person First – Always

So please do tell me, does language bother you, have you learnt anything from today’s blog? Is there anything you would like me to explain about Down Syndrome and my journey with Ellie in future blogs.
Do post in the comments or feel free to email me directly here.

Until Next Time
Sharon x

Questions Parents Ask Themselves After Receiving A Down Syndrome Diagnosis

(Part One)

You may read this and wonder what a weird question! That’s ok but I thought it was important for other carers to be assured that any question they ask themselves after a diagnosis are all perfectly normal.
I collaborated with several parents in the Facebook community Wouldn’t Change A Thing Parent Support group to write this so please do read to see what questions often go through the mind of a mum when she is given a Down Syndrome diagnosis.

Social Questions

Will she get invited to parties?
Will she have friends?
Will he be bullied?
Will nursery have him?
Will she get married?
Will other children make fun of him?
Will she be beautiful/pretty?
Do I need to live until 100 to make sure they’re safe?
Will he be ostracised?
Will people understand him?
Will she look like me?
Will everyone love her?

Scary isn’t it, but most new parents do wonder about the community and how they will treat their child? I honestly feel that this can be overcome with more children with Down Syndrome being seen in the community with their friends. More knowledge passed on at nursery and schools to encourage friendships and more parents being aware of these concerns and maybe talking to their children about Down Syndrome.

Ellie with her school friends

Functionality Questions

Will she be able to ride a bike?
Will he be able to drive a car?
Will I be able to work?
Where will he go to school?
Will he be able to walk?
Can she fly abroad?
Will she talk?
What will happen when we are gone?
Will she be independent?

These questions can be answered by parents that have been there before and I feel it’s important to be part of your local community to meet other families. All of these have been achieved by children and adults with Down Syndrome so there is no reason why not. Your child may take longer and they may experience health issues or other complex conditions that could affect them from achieving SOME of these.
The only one that can not be answered is what will happen when we as parents are gone but by seeing adults with Down Syndrome living independently, working and getting married; the future is bright.

Check out Down Syndrome in the News

Family Questions

Will my family want to see her?
Will my son get picked on because of his sister?
How will the additional care impact her brother?
Will her brother become over protective and get into trouble?
Will this have an impact on her sister?
Can I still be a grandma?

Hard questions aren’t they as no-one knows how family will react when they know the news. What I would personally say to a new parent is try not to give these questions much thought. Yes you can still be a grandma, it isn’t impossible but by that time you might not want to be. To those that have family with children with Down Syndrome, did you want to see the new baby straight away, I would love to know.

By writing blogs like this, the aim is to help you understand a little more about Down Syndrome, the aim is to help new parents with the knowledge that generally, most new parents feel and act the same and whatever you are feeling, thinking it is ok. To everyone else in society please bear these questions in mind when a family, a friend tells you their news of their child’s diagnosis and help them with any questions, concerns they may have; be there for them and empower them with positivisism

As always thanks for reading and stay tuned for Part 2 coming soon. If you have any questions at all about this blog or about Down Syndrome, please do not hesitate to comment below or message me

Until Next Time
Sharon x

A Review of Mahdlo Youth Club in Oldham

Welcome to our review series, this time we get to review a youth club based in Oldham. When I say we, I mean myself and my daughter Ellie who has Down Syndrome. Therefore we try to see how inclusive and accessible these places are. Why Mahdlo, read on?

I recently saw Mahdlo advertise an activity for children with additional needs on a Down Syndrome community page https://www.facebook.com/search/top/?q=dswestpennine%20registered%20charity%201140539&epa=SEARCH_BOXand began to investigate immediately as I still can’t decide whether more facilities are needed or if they are out there and simply not being shared. Thus I went along for a visit with Ellie to get a feel for the place and here is our review.

The Building Review

The building is currently undergoing some work with extra space being added for more facilities which is brilliant. However there is no parking outside, which needs to be addressed but if you hold a blue badge you can park on near by streets and the main road. The building itself is over two floors with lots of rooms for various activities and has a cafe on site. The cafe is ideal for parents to grab a coffee or a quick lunch when the children are accessing the activities. It is a spacious building and the ground floor was extremely wide with enough room for several people to walk through at once.

The Activities Review

There are lots of activities at the centre for both children with and without additional needs and all be accessed via the website
https://www.mahdloyz.org/
The one that caught my attention was the family afternoon which is every week on a Sunday for families with additional needs. Check out these pictures as I was openly in awe of everything that was going on, from climbing, to trampolining to cooking. There was nothing missing.

The Staff Review

The staff were both welcoming and friendly which is what you would like to see when visiting new places with a child with additional needs. There were several staff available in all the different areas at all times so you could easily get advice, support and the children were fully supported. There was a lovely lady called Amy who was due to have a baby within days and actually got on the trampoline with Ellie to guide her so she was safe.
We even had a chat about atlanto-axial instability which showed their knowledge and I shared this link with them for further guidance https://www.downs-syndrome.org.uk/for-families-and-carers/health-and-well-being/neck-instability/
Amy Taylor, the Ability Co-Ordinator met myself and Ellie on the day and gave us the guided tour. I appreciated that she spoke to Ellie and not over her, she included her when she could and even asked for a high five at the end.

Conclusion

I cannot wait to go back to this centre and get Ellie fully involved. The membership is £5 annually plus 50p a visit or you can pay as you go for as little as £1.00. It’s only 20 minutes outside of Bury and I really wish every council had one of these sites available to allow access for those that cannot drive.
Please do message myself or Amy if you would like any further questions answering and keep me posted if you go for a visit.

If you have enjoyed this review and would like to see our review of our caravan holiday this year, check out https://t21hub.com/2019/08/14/a-trip-to-wild-rose-caravan-park-with-ellie/

My goal is to get as many inclusive events and activities shared on social media to help other parents with children with additional needs stay informed. If you would like me to come and offer a review of your place, please contact me by email at sharonc3966@hotmail.co.uk

Recently I found out I was listed in the Top 100 bloggers about Down Syndrome https://blog.feedspot.com/down_syndrome_blogs/ so there will be plenty more blogs coming from me. To stay tuned, follow the blog.

Until Next Time and as always thanks for reading.
Feel free to tweet, share or pin
Sharon x