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

The A-Z of Words that Parents Associate with a child with Down Syndrome

My blogging journey is all about educating people about Down Syndrome and I thought what an effective way of doing this was to create a simple A-Z to parents from parents who are raising a child with Down Syndrome. It is a collaboration with the help from other parents in our Facebook support group Wouldn’t Change A Thing (see attached). Together we devised this A-Z of words that we associate with having a child with Down Syndrome.
https://www.facebook.com/groups/801281006738525/

We hope you like and as they say

“Let’s start at the very beginning, it’s a very good place to start……”

Let’s start with the beginning of the alphabet
A – Ability; just because your child has Down Syndrome does not mean that they are not able. They may have alternative ways of speaking, of learning and at times to reach milestones but trust me – they do have the ability. Simply give them the space, the means and the encouragement
B – Be Yourself; this is not just for your child who I firmly believe will never have an issue with this concept but more for you, the parent. Acknowledge the syndrome and then when you can, forget about it. Be yourself with your emotions, with your expectations and with the outside world….just be you!
C – Chromosome; yes Down Syndrome simply means that your child has an extra chromosome on chromosome number 21. The End.
It does not define them as you will see, if you continue to read.
D – Determined; take a look at every day skills which are required to perform simple tasks. Now take on a learning difficulty, sometimes an additional disability, smaller limbs and do the same task.
Well your child will do it as they are more determined than ever.

Ellie trying archery

E – Education For All; many parents worry about mainstream and schools for children with additional needs. All children with Down Syndrome need educating. We are no longer in the 50’s and there is more than enough proof that mainstream is working. Look at what is being achieved today. Schools and councils need to stop worrying about budget cuts and concern themselves with education for all.
F – Fun; who doesn’t have fun with their children (well when they’re not shouting at them)? To all new parents, this will become part of your daily routine.
G – Genuine; this I personally love as my daughter Ellie just says it like it is. I have been told on more than one occasion that she is kissing the baby in my belly (yes you guessed it…I’m not pregnant!) and more recently hearing ‘No thank you mummy, I don’t want to move my plate right now’
H – Happy; it’s a biggy. NOOOOO children with Down Syndrome are not always happy. Ellie cries, screams and has moments as much as her brother Billy and I beg you to ask another parent ‘Is your child always happy?’ and watch their eyes role.

Ellie’s serious face

I – Inspiring; I understand that most parents feel inspired by their children but those children that have Down Syndrome do need to put a huge amount of effort in to simply get to the same milestones as their peers. This could be physically, mentally and more and because of this they inspire us parents each and every day.
J – Jokers; I am not joking (see what I did there) children with Down Syndrome have a wicked sense of humour and whilst Ellie can be very dry, to the point and lateral she really can make you laugh out loud.
K – Kindness; the type of kindness that children with Down Syndrome currently have comes from the heart rather than for a favour.
L – Love; all parents have unconditional love for their children. Parents with a child with Down Syndrome have that little extra and they do become their No.1 fans.

Girls Trip

M – Milestones; it is every parents dream when their child with Down Syndrome meets a milestone (whatever their age) because they have worked so damn hard to get there. I personally cried when Ellie first giggled which then resulted in her crying. We shrieked when she started walking (I think she was 2.5) but without any other complications they do all get there in the end and as they get older it does get less of a worry.
N – Never, Never Doubt or Underestimate; I have watched some amazing videos recently which has motivated me more with Ellie can achieve. Our children can and will always surprise you.
O – Own Agenda; Each child has their own agenda, their own journey and their own way of doing things. You will see children bottom shuffle to get to where they want to go. You will see children with Down Syndrome just find ways to get what they want and in their own time no matter how much you push and shove. Encourage but don’t force and watch the magic happen.
P – Perfect; children with Down Syndrome are perfect in their own unique way to their parents and family and they really wouldn’t change them for the world. When families stop seeing that label (it took me a while) the magic begins.

Perfection

Q – Quite Brilliant; do I need to say more or should I change that to Extra Quite Brilliant
R – Resilient; truth! Many parents of children with Down Syndrome say their children are resilient, tough, bounce back easy enough and have the capacity to keep on going. Not a bad quality to have in a child don’t you agree?
S – Superstar; trust me you will say this one day, your child is a superstar
T – Truthful; now this is a fabulous trait when those words are kind however it has been said on more than one occasion from Ellie that she is happy for the baby in my tummy.

Ellie fighting pneumonia

U – Unique; whilst facial characteristics are similar that is where it ends. Each child with Down Syndrome is unique in their own unique way; from character to both strengths and weaknesses and you will not be able to tell this from birth.
V – Victorious; each year as a parent you will feel victorious, trust me.
W – Wouldn’t Change A Thing; ask 90% or more of parents and they wouldn’t change a thing about their child. I now 100% believe Ellie is Ellie and she wouldn’t be Ellie without that extra choromosome.
X – Xtra ordinary; that xtra chromosome provides xtra cuteness, xtra potential and xtra stubbornness don’t you agree?

Ellie s unique

Y – You Can Do Anything; without any extra health or mental issues each child really can do anything. Stop limiting your beliefs, let your child shine and believe anything is possible.
Z – Zest; great enthusiasm and energy. Enough Said!

Do you agree with this A – Z, could you write your own; could these be said for any child? I would love to hear from you in the comments or contact me today. Thank you to all the parents of children with Down Syndrome whom contributed on this A-Z and as always, thank you for reading.

If you have enjoyed this blog and are looking to understand more about Down Syndrome, please read Myths and Stereotypes
https://t21hub.com/2019/05/08/challenging-some-myths-and-stereotypes-around-downs-syndrome/

Until Next Time
Sharon x

10 Reasons to Celebrate your Baby who has Down Syndrome

I write this as part of my new series, ten reasons. The main reason I started blogging was to educate people about Down Syndrome and this began when Ellie, my daughter, turned 10 this will become and I’ve decided this will be a new feature.
In addition, this title is one I have thought about for some time after reading the amazing article https://themighty.com/2019/07/celebrating-baby-down-syndrome-diagnosis/ and decided there were many more reasons that five, so let’s begin.

First may I just add that I wish I had read a blog post like this when we received our own diagnosis with Ellie because unfortunately it wasn’t pleasant, see here
https://t21hub.com/2019/08/17/the-first-chapter-with-ellie/

Here Are My 10 Reasons

  1. You have been given a diagnosis of Down Syndrome and you now may have a preempt view of your new life as a mum. Stop!
    No new mum can predict their child’s day let alone their future.
  2. You may begin to worry about your child reaching milestones, such as walking and talking. Stop!
    Each child gets to where they want to be when they are ready, including yours.
  3. You may start to worry that your child will grow up lonely, with no friends or social life. Stop!
    You are just about to join an exclusive community, the Down Syndrome community, which will have enough friends in there for your child, for you and for your family.
  4. You may be concerned about your child’s immune system and overall health. Stop!
    Your child may or may not need additional support, such as intervention and wearing glasses; remember there are many children these days that need help with speech and sight these days.
  5. You may be feeling overwhelmed, I know I did and not sure what to do next. This is completely natural. I would not suggest going on Google or diving straight into an outdated book. I would suggest simply holding your child that little bit longer for a cuddle even if you are feeling emotional.
    Here’s a book I would recommend though
    https://www.wouldntchangeathing.org/product/wcat-book-by-celebrate-t21/?fbclid=IwAR1dwSxdh4_k1XhU3CwYqtmMnqgxkGMee8GCUqKZ8YztF5c6nmc6-EmQmys
Here is my daughter Ellie, just a few days old doing what all babies do; sleep and look cute.

6 Do not stereotype your child, they will grow up to be more like you than different and most stereotypes these days are extremely outdated
https://t21hub.com/2019/05/08/challenging-some-myths-and-stereotypes-around-downs-syndrome/
7. You may be concerned about future independence, please rest assure that many individuals with Down Syndrome are living as independently as possible. They are going onto find employment, become celebrities and get married. Have you not heard of the amazing Sarah Gordy
https://en.wikipedia.org/wiki/Sarah_Gordy
8. Are you worried about siblings, new or future ones? Stop!
Speak to other parents and find out the same as I did, future siblings are not guaranteed to receive the extra chromosome, that’s only for the privileged. Most children go onto love their siblings even more as they develop a true bond.

Ellie with her younger brother, Billy aged 10. Their love is real and doesn’t count chromosomes.

9. You may feel that your child will not be able to take part in the community. Stop!
They can and they will, if you want them too. Many children go to mainstream schools and lots of after school activities are inclusive or tailored to meet the needs of all children. Ellie enjoys drama and swimming, she currently has performed with http://Bamboo Studios several times in front of large crowds.
10. You have a baby, a baby that has an extra chromosome, that’s all for now> Enjoy the journey and take the pictures even though I promise you, you will never forget a milestone like many other parents do.

To Summarise

I’m sure with the help of other parents we could get these top 10 reasons to celebrate your baby with Down Syndrome to 1000 and one day you might read that blog. If you are reading this as a new parent, try not to be scared even though all emotions and reactions are normal, accept them. Enjoy being a mum you’ve waited approximately nine months for this.

If you are an existing parent to a child with an extra chromosome, can you add in the comments an additional reason to celebrate.

Finally if you are reading this as not a parent to a child with Down Syndrome but know someone that may benefit from this blog and website, please share and help us spread awareness.

If you would like to connect with me personally, please go to my Work With Me page
https://t21hub.com/contact-me/

Until Next time and as always thanks for reading
Sharon x



Do you have a child with Down Syndrome going into year 6?

Today is the day, my daughter Ellie, who has Down Syndrome starts year 6 and I am feeling very emotional. Since they broke up for summer I have always been on countdown for their return, yes I am that mum lol. We have had a lovely family summer but I truly believe six weeks is too long to be out of routine and that goes for both parents and children. So today is the day, the day Ellie enters her final year of primary and I am emotional. Here’s why.

I feel today, just like I did when Ellie started primary, nervous about what the future holds, concerned at how she will cope when she heads off to high school; which isn’t even for another year but I know this year will be just as fast as the last five have been and I really want it to slow down.

Ellie has Down Syndrome which means it takes her a little longer to get used to new routines and learn new topics. She has full support in class but this year we are hoping for a little less support to encourage Ellie to get on with her work more independently. This worked a few years back when the support stopped at lunchtime and has given Ellie the skills she needs to pick her own lunch, carry her tray and then find somewhere to sit.

Each year through primary, Ellie has kept up with her peers as best she could and for the last few years primary school has been a safe place for her but today I was emotional. I was emotional because it is her last year at primary, year 6 and it didn’t help, that me being that last minute mum, only picked up her new orthodontic shoes yesterday, so to Ellie they felt big and clumpy. She cried, she doesn’t like them and she didn’t want to go back to school 🙁

This image has an empty alt attribute; its file name is Ellie-year-6-1-768x1024.jpg
Ellie, after wiping her tears

I know year 6 will be an emotional year for me, her last Xmas, last Easter at primary and her younger brother Billy, has started juniors too; it simply feels like they are growing up way too fast. So why have I chose to blog about this, well its therapeutic for me and if it helps one other parent to appreciate the emotions that most parents feel when their child goes into their final year of primary, more so when you have a child with Down Syndrome then it was worth it. These emotions are yours, accept how you feel and reach out to other parents, if need be, who have been there too. You can always contact me for a chat too, you can message me https://www.facebook.com/ShazandEllie/

Thank you as always for taking the time to read and do let me know have you gone through these emotions yet as your child went into year 6?

Until Next Time
Sharon x

The First Chapter with Ellie

The first chapter with Ellie is something I’ve wanted to write for a long time but it’s not a happy story to begin with and I’ve debated with myself often but have decided it is always best to be open and honest, so please do continue if you really want to hear the truth.

I was 33 when I got pregnant with Ellie, I thought I was young but understood my biological clock was ticking. I had the regular 12 and 20 week scan which were ‘normal’ and I think I was asked about a blood test (it’s vague) but was reassured it’s unusual for someone to have any problems, therefore I declined.

After a very short labour I was delighted, I have a baby girl ( we knew due to the scan) and we had a name already picked out, Eleanor. I recall, whilst being stitched, texting my friends the good news. I also remember vividly Jason (my husband) pointing out that she had a ‘flat head’, my mum reassured me it was nothing and I tried to breastfeed but it wasn’t happening. A few hours passed and I went to have a shower.

Upon return there was a pediatrician with a trainee examining our baby. I sat watching with Jason, as they appeared to be going through a checklist. Every few seconds, the pediatrician would turn to his trainee and, pointing to something on Eleanor, would declare “mongoloid”. Mongoloid, mongoloid, mongoloid, mongoloid, again and again and again, purely for the benefit of the trainee’s training, this eventually reduced Jason to tears, I knew something was wrong. After an eternity, the pediatrician turned to me and simply stated “Your child has Down Syndrome. Normal child is strong. Your child all floppy”. I looked bewildered, I had never heard of Down Syndrome and at this point Jason was sobbing so I knew it wasn’t good. I sobbed with him and all I could think of was this must be some type of a disability; I had a disabled child.

The nurses were polite and asked did we want to go onto the ward or have a private room. I asked for a private room. I won’t lie the next few hours involved lots of crying and actually realising I did not know what we were going to deal with. The only thing I do remember is everyone asking ‘Did you not have the blood test?’ I felt it really was all my fault.

After several hours a nurse asked if we had fed the baby, we hadn’t and she hadn’t even cried. We were advised how best to provide the bottle due to Ellie’s large tongue, Jason fed her as at this point as unfortunately, at that point, I felt no attachment. Jason was in charge of telling the family who were very supportive which made me cry even harder. I did not want a child with a disability. Without knowing and in hindsight I had a stereotype mindset of what a child with a disability was and the picture wasn’t a good one. I didn’t know if we could cope.

For three days we were in hospital to ensure Ellie, her new name, was feeding well. We had decided on day 2 to change her name as we felt that the journey we thought we were going on had vanished and were now on a new pathway. On this day, I asked for some literature about Down Syndrome so I could get my head around what I was dealing with. It wasn’t nice, it was an outdated literature that explained practically how many issues Ellie was going to have to deal with from heart issues to sight, hearing to name a few. I continued to cry.

By day three I had chatted to Jason about our options, what could we do, we discussed adoption and we discussed doing our best. We knew deep down we couldn’t do anything but have Ellie in our life even though it wasn’t what we had planned. Friends were supportive and some family members said ‘She doesn’t even look like she’s got it’.
We had to give blood tests at the hospital to confirm the diagnosis and I remember 100% the trainee taking the bloods saying ‘It could be 50/50 this’ and I clung to that hope.

By day three I was ready to go home, but we couldn’t unless Ellie had drank 50 ounces of milk. She finally did. Hooray! Jason picked us up and in the car I felt scared and alone, I had never had a baby, let alone one with Down Syndrome.

We were told we would get the results from the blood test on Friday, first thing that morning I was on the phone thinking ‘It could be a mistake, it might be Mosaic Down Syndrome’ ( which means there’s a mixture of cells affected by trisomy 21 ) and after several hours of anxiously waiting we finally got the call; the blood tests proved, Ellie has Down Syndrome.
I sobbed.

I tell this from truth and from memory. I had never heard of Down Syndrome. I was never given any positivity towards the disability. Jason had only seen a home from his early child hood days where people with Down Syndrome were kept away from society and he remembered it well. The future looked bleak but it isn’t.
Ten years on and Ellie is Ellie, she is my super hero and my pain in the bum. I certainly wish I had known back then what I know now. I wish the professionals had been more positive. I wish I had known and understood that people with Down Syndrome today are educated and included within society a lot more than they were back in the 1960s. I truly wish I could have celebrated Ellie’s birth way more than I did and that is why we go all out each and every birthday.

We really wouldn’t be without Ellie these days, she is our daughter, she teaches us so much each and every day. She is not a blessing; she is a young girl with her own mind and just needs a little extra help with her extra chromosome. Ellie has not only changed our lives but everyone she meets, we have been included in an extra special community that I did not know existed. I personally have learnt so much in these last ten years than I ever would have done without Ellie.

To Ellie, if you ever read this, I wanted to be honest to other parents to show them that all feelings, good and bad are human and allowable.
We love you more than you will ever know and go show the world what a truly extra special person you are.
Love mum & dad 🙂

Inclusion in the High Street, does it exist?

Inclusion in the High Street,  does it exist?
In years gone by where many people with Down Syndrome have not been recognised for their attributes, their personality or their uniqueness; certainly not on social media and most definitely not on the high street with their advertising, pah!
But times are changing, albeit slowly, but they are changing. The high street are now starting to see individuals for who they are, individuals. They are beginning to be more inclusive as they ignore the label, the stigma of having a model with a difference and giving children and adults alike to be seen, to take centre stage just like their peers.

Why, Not Back Then?
As I was growing up, I do not recall ever meeting a person with a disability. I certainly did not know what Down Syndrome was. Had I led a sheltered life, I don’t believe so but maybe my eyes were closed? Why did the high street not use models with Down Syndrome to showcase their clothes and products? I don’t know the answer, there could have been a policy that discriminated against disability. Yet it seems more likely there were several other reasons as to why people with Down Syndrome were not considered, from the logistics, the unknown, to the fact that there not many models with Down Syndrome actually on any modelling agencies? Who knows?

Why Is It Important Today?
Quite simply, times really are changing, many are tired of seeing the same type of specific model advertise, you know the one, and the public have spoken, ‘We are not all the same shape and size and if you want to continue to get our money then we want to see more people like us – unique and individual’ (They might actually be my words but you get the drift). The high street listened and some started to offer advertising to a variety of models of size, shape, ethnicity and gender. The public started to see models just like themselves. This is so important for our future generations to understand that we are all different yet we all all can inspire others.

Here are some High Street Names & Businesses that are inclusive and have models with Down Syndrome on their portfolio

  • Very UK
  • Welshblood.org.uk
  •  M&S
  • Spanish Boutique
  • Little Betty’s Boutique
  • F&F
  • Rebecca Leigh Photography
  • Peekaboo
  • Sainsbury’s
  • Primark
  • Zebedee Management

Can you name anymore?
Inclusion in the high street does it exist, yes it’s getting there but as always more needs to be done. Thank you as always for reading and a huge thank you to the parents of the group  #wouldntchangeathing
(https://www.facebook.com/groups/801281006738525/)
for sharing these pictures below.

Until Next Time
Sharon x

Here is supermodel number 1
Here is supermodel number 2
Many supermodels

Carer's Allowance and Free Access

Are you a carer, do you know what you are entitled to as a carer? Not sure, then stay with me and read on. Hi I’m Sharon (if reading for the first time) and I am a carer to my daughter Ellie, who is 10 and has Down Syndrome.

A definition of carer in the UK is ‘anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support’ according to The Carer’s Trust.

As a carer you are entitled to Carers Allowance, which in the UK is £66.15 a week if you care for someone at least 35 hours a week and they get certain benefits. There are other criteria and please refer to https://www.gov.uk/carers-allowance for assistance.

After speaking to several mums I was curious as to whether this allowance was justified. I know it was needed for our family as it has become the income I lost giving up work, but at the back of my mind was always the thought, ‘why are we entitled to it’ and the next paragraph sums up why every carer is 100% entitled.

Many carers give up work, like myself, and this allowance subsidizes the family income. Some put the money towards travel for additional appointments, many use it for specific items that can help their child; sensory toys, private therapies, specialised clothing/equipment and a few put it towards their children’s future needs. So yes every carer should apply for that allowance.

So now you get the picture about the allowance, let’s talk free access. Now every young child generally can’t go to an attraction on their own, but most teenagers and young adults can however people with Down Syndrome may often need a carer for some supervision and with some help from this fabulous group https://www.facebook.com/groups/DLAchildrensDaysOut/
we have created a list of places where carers go free.
Please see attached as this will be updated

I would love to know if you have found this useful or if you could add to the list, please comment below and as always thanks for reading.

Until Next Time,
Sharon x

If I Knew Then What I Know Now!

It’s a common saying isn’t it? ‘If only I knew then what I know now’ but this couldn’t be more relevant to me as I recently celebrated my daughters 10th birthday. Ellie was born with Down’s Syndrome and diagnosed a few hours later; for those parents in the same situation you can only imagine the thoughts that ran through my head at that time (but that’s for a different post).

So I wanted to share with you some notions, with the help of other parents, that I wish I had known back then, in case you are reading this as a first time parent.

Ellie on holiday aged 2

One important thing to remember is your child is unique and has your genes, so whilst there will be similarities with others born with Down’s Syndrome they will be more like you than you realise. In addition due to the wide spectrum of learning difficulty in Down’s Syndrome you cannot predict what your child will or won’t be able to do.

From a mum, here are her words “There is no need for fear, my son brings me more joy than anyone ever could…..he makes me proud every single day.”

You may become or you may not fixated with milestones (I sure did) but when your child hits them, and they will in their own unique way; you will be over the moon, jump up and down, record it and cry with laughter 🙂

Other parents with a child with Down’s Syndrome will become your best friends as they understand exactly what you’re going through. I can strongly recommend joining a supportive group as soon as you feel ready (one link is below and another in linktr.ee/shaz_crowley)

Forget the myths and sterotypes; most people with Down’s Syndrome are living a completely different independent life to those from only a few decades ago due to medical progress, interventions, inclusion and technology; Ellie is a whiz on her ipad (see previous blog)
https://sharoncrowley.wordpress.com/2019/05/08/challenging-some-myths-and-stereotypes-around-downs-syndrome/

Yes there will be downs as well as ups, yes there may be lots of appointments, health issues and other additional needs to contend with but from one mum to another; you can do this. Have faith, trust your gut instinct every time and enjoy the delight of being a mum. There will be lots of happiness to come and your child will not only enrich your life but everyone else they meet. They will give you some fresh ideas on life and expectations so believe that everything is going to be alright.

Pouty

A special thank you to the parents of this group (#wouldntchangeathing) for their words of wisdom and insights
https://www.facebook.com/wouldntchangeathingdotorg/

Thank you as always for taking the time to read and if you would like to connect with me, connect via @linktr.ee/shaz_crowley

Until Next Time
Sharon x