Welcome to my Warrior Mums, a collection of family journeys from parents of children/adults with special needs.
Some of our mums are advocates or established campaigners, one is a midwife, then we have two nurses, three teachers, two solicitors and a GP....
Their stories have been a learning curve for parents and professionals alike.

We've had to adapt to so many government cuts and policies in the last few years and it's taken its toll on families. This blog has given parents the opportunity to share their individual experience of their unplanned life with a vulnerable adult/child.

Some parents have had great support with wonderful professional guidance, whilst others, sadly, have been lied about and deceived, blamed for their child's 'problems' by some who have no understanding of their disability. Facts about their family life have been distorted and manipulated into many untruths, making parents aware their reputation precedes them in every meeting they attend. They feel judged, disrespected and ganged up on. Telling their story in Warrior Mums puts their truth 'out there' for all to see.

A major concern is that when a young person reaches the age of 18, regardless of whether they have autism or a severe learning disability, legally, they are classed as an adult. As a parent you can no longer make decisions on their behalf. If your loved one is in the care of the state and you upset the care staff or social workers then the chances are they will stop you from visiting or from having any contact. Information regarding medication or any other health issues about your loved one's welfare is withheld, all under the guise of your loved one's 'best interest', pulling out the Court of Protection/Mental Capacity Act gagging cards. The cruel message to parents is clear - - tow the line, stop asking questions and taking too much interest or lose contact with your child.

It's hard to believe this government are locking up people with special needs, people who would have had more freedom in the 70s living in big 'institutions' than they do in 'independent living' today...

We have to do something to stop this abuse of power. We have to do something today...

Michelle Daly

21 June 2014

Warrior Mum - Karen's Journey

Down's syndrome -

Callum was born into a close knit family and was doted on from the minute they laid eyes on him. With no complicated health issues that often present themselves to a baby born with Down's syndrome, this little boy, the youngest of four children, was taken home and brought nothing but happiness and joy. 

Growing up in a close mining community in Donaster, Callum has always been loved and accepted by everybody. The old proverb ‘It takes a village to raise a child’ certainly rings true for this young man and today Callum's Mum, Karen, proudly shares their story. 

"They took us up to see him and a doctor said, 'Do you notice anything different about your son?'
John said 'Yes he's the image of his brothers!'
The consultant replied 'I'm afraid we have some bad news, I think your baby has Down's syndrome.'

I said 'Oh thank God, I thought you were going to say he was going to die.'" 

Karen’s Journey
I was born in a mining village, or pit village as I prefer to call it. A place called Bircotes near Doncaster. My dad was a miner, as was my grandad and great grandad before him.
A mining village is a very close knit community and I had more adopted aunties, uncles cousins than I care to remember, some turned out to be really important in my children's lives. My mum was a stay at home mum, I had a brother Paul and step siblings too. We didn't have much money and I can remember dragging a home made go cart to the woods with my siblings to collect wood for our fire. My childhood was hard, but good. I was extremely close to both sets of grand parents.. In my later childhood they became our sitters when out of necessity Mum had to return to work. I also remember the freedom we had to play outside in complete safety.
I went to school at North Border infants, junior and senior school. I liked school, I was a complete tom boy, prefering to climb trees and play football, to girly things. I didn't play with dolls or sew.
I still am the same today, the joke is, if it needs sewing or a button on, bin it..
I was however very sporty, being very good at cross country, running and football. I ran for the school and played for the football team. I still run today. I also enjoyed cookery. I had a best friend Jane all through school years. She is still a good friend.

When I left school at 15 I went on to get a 5 year catering course, day release from various schools, hotels and restaurants. I’m proud to say I qualified as a chef at 19.
I met John my husband to be at 17  whilst playing darts with my boyfriend. John was from the same village as me so I knew him by sight. He was 2 year older than I, but I liked him instantly and there was certainly chemistry.  We were both Manchester United fans and we clicked straight away. We were engaged when I was 18, and married at 20.
We are very happy, and we are a partnership. Have had our ups and downs, but remain very together today.
We both wanted a big family and wanted children straight away.
We had some borrowed, and had four of our own. Kate is 30, Shane 28, Ashley 26, and our youngest Callum is 21.

The joys of motherhood
On 6th of April 1993 Callum was born. He was an easy birth and a very big boy at 9 lbs. 4oz. When he was born he didn't cry, and was very blue. Not just a bit but very. I remember the silence, it seemed to go on for hours, but was was only minutes.
The nurses took him off me and were clearing his airway. They told John and I he was breathing but only just, and needed help so they took him away. I remember crying and praying, they told us they thought he had health problems. I was saying, I don't care if he has 10 heads, as long as he lives. I meant every word.
They took us up to see him and a doctor said, 'Do you notice anything different about your son?' John said 'Yes, he's the image of his brothers.'
The consultant replied 'I'm afraid we have some bad news, I think your baby has Downs syndrome.' I said 'Oh thank god! I thought you were going to say he was going to die.' That he lived was honestly all I cared about at that moment.
Callum was not to be beaten and by next day had gone from strength to strength. He was a greedy baby, tried and tried to feed him myself, but he required a special teat as he had a high steeple pallet. Once we got that sussed, he romped it.

Ashley, Kate and Shane with baby Callum

We took him home, I don't know how I was supposed to be feeling, but I can honestly say that I wasn't sad. My other kids were 9, 7 and 5. John and I told them they had a very special brother. We kept it simple and they didn't notice any difference. Kate at 9 was like a second mum. We all absolutely doted on him. We wouldn't honestly want him any different.


John didn't want to return to work (hes a miner) as are our older sons. He didn't want to leave Callum. Our son was a squashy big lump; a beautiful gorgeous baby.
Then came telling people! We had only told a select few. We received a lot of pitying looks, but the ones I cared about were fantastic.
Callum thrived, he smiled, he laughed, that special crinkly grin. Only mums of Downs syndrome babies get.

He crawled at 14 months, walked at 2. Potty trained at 4. Started mainstream nursery at 3.
Shane and Callum
Callum and Kate


When Callum was 5 my daughter nominated him for Noel Edmonds Christmas presents.
Callum with Noel Edmunds
We were chosen and were all flown to Lapland for a week so Callum could meet the real Santa. It was such a magical experience for us all.

M. What's been your experience with the education system?
The local school, Serlby Park, is in a mining village, a very close community, and they already knew  Callum. I had a smooth ride in all stages. Callum went to mainstream nursery at 3 where he had 17 hours 1-1 support a week. Primary school at 5 and then Junior with 12 hours support. At the Comprehensive he had group learning support (4 in group) and remained there until he was 14, when I thought he was needing more than mainstream could off him. It was a sad time as he had made so many friends. Luckily a couple Liam and Peter still visit him and take him out now.

After Serlby Park Callum went to St Giles special school Retford, best move we ever made. His sister Kate was already a teacher there. He took a while to settle but once he did he became very happy. It was just what he needed.
Callum and Tommie
He formed a special bond with a Tommie Hamilton. He had Autism mild and global delay. They are still inseparable even though they go to different colleges. We live in the same village, and his mum Mandy is a good friend to me. We take them to the same drama group, sports group and Monday club. It’s a friendship for life, of that I’m sure, yet they are so different.

Callum continued at St Giles until he was 19, continuing through post 16. I have a lot to thank St Giles for. Callum has turned out to be a funny mature young man. Since Callum left post 16. He has been at North Notts college 3 days and at ROB recycling at a work placement 2 days. He loves his job. 
Callum has just got a place at Doncaster Communication Specialist College, starting in September. So lucky to have passed the assessment, but once again it is down to funding. I fought once for his work placement and after 7 months won. I will once again be fighting if the funding isn't granted. I have a big mouth, and am not afraid to use it. Some officials don't like me but they all need to remember I'm a mother fighting for my son. I'm sure you'll agree that life is hard enough for them as it is.

He does have problems with his speech and has just been diagnosed as very deaf and is due at hospital next week for hearing aids. 
He has also recently been diagnosed Coeliac. So he now has a gluten free diet. He is so much better a month on.  
He's no pushover either. He has a bad habit and if he doesn't like anything or anyone, he calls them nobs. One day when we were in the post office I asked for £70 out of Cals savings account. The clerk  thought I said 20. Not enough for the DVD Callum wanted to buy. As I explained the amount he wanted she said Callum had asked for the amount at same time and she found him hard to understand. Callum heard this and looked at her and said really slow, loud and clear. 'I SAID 70! I can't understand you either!' As we walked away he said NOB. I had to apologize and tell him it was wrong. The shop erupted in laughter and we left. 

M. Callum's siblings must be very proud of him?

Oh yes, they certainly are!

Kate is 29 and a mum. She is a SEN teacher. When Cal was born she was 9. She is a fantastic help to me. We live near one another and help each other out. She works i have my grandkids. I go out she has Callum. She shares my feisty don't take no crap nature. We infact are a good team as Kate knows the system.


Shane is 26. He is my soft son, he's also full of fun and Callum is his apprentice. He's so like him in his ways. Caring, daft and always there for me. He loves to take Callum to his home often saying mum you need a break, but I don't, I get bored alone. I'm so protective of Callum he tells me off. You deserve you and Dad time. I love my kids at home and my oven is always on.

Ash iz 25 and Callum looks like him the most . Ash is the quiet one, the thinker. He doesn't let Callum get his own way. He doesn't let him win at everything either. Shane does.
Ash is also protecting Callum. He says he has to learn, that you can't win everything. Ash taught Callum to go down to the shop for paper and milk alone of a morning by following him discreetly.
I love and am so thankful for all of my children. I think my older kids are better people for us having Cal.

Karen with hubby John.

John my husband is the best ever. I couldn't do all I do without him. We are a team. John enjoys football Man Utd of course and horse racing. He shares love of these with all the boys and Cal is getting to be a good bookie.

Shane, Karen, Callum and Ashley
My family are massive Man Utd fans , they all up to this season were season ticket holders. Callum is obsessive over Man Utd at matches every one knows him.
Now however my husband and sons have been made redundant, as worked at Thoresby colliery. I am very bitter with the present government, hate what it has done to the mining industry, the working class and the disabled. It is absolutely deplorable and I honestly don't think they care, one little bit.
Callum also love WWE Wrestling and goes every time they tour. My husband and sons take him

M. You talked about your family's passions, would you like to tell us about yours?
My obsession and my time is the Pop Opera group IL Divo, I have met them many times. I absolutely love them, passionate about them so much so I go to see them when I can. I'm off to Amsterdam In October with my best friend. I think everyone needs a break to allow for their individuality and what better way to spend my time. The photo is me with my favourite Divo URS

Karen and best friend Collean with IL Divo

M. Finally, I'd love you to share about your parent contact in the community and what developed from it.
We had a lovely special needs social worker, Jan Brown. Sadly Jan is no longer with us. She became a good friend to many families but died 4 year ago from cancer. When we first met she remarked that I took Callum's diagnosis very well and asked if I would talk to new parents with a Down's syndrome baby when they were ready. I visited quite a few mums, mostly locally in their own homes. Callum has always been hyper and full of mischief and many mums loved to see him so vibrant and healthy. He climbed before he walked really.
Jill Barrett, Claire Drabble , Julie Rolland being some of these mums. They all had sons that had Down’s syndrome, who are now lovely young men and friends of the family. Callum of course grew up knowing them socially. Social side is SO important, I can’t stress enough. Callum is confident, mature and outgoing, with social activities most nights.
I sometimes still see new parents but obviously not as many. When a baby is born, the mums of course don't want to focus that far ahead.
It was Bassetlaw area of Nottingham

In love - Stephanie and Callum

Callum also for past 4 years has had a girlfriend, Stephanie. Steph's mum Angela and I met when I was the contact parent at the hospital. Angela had Steph and I took Callum at just one year-old, into the hospital to talk to Angela and show her my son. We remained friends, and Steph and Callum's relationship blossomed. They love each other very much. We chaperone them on dates, every second Saturday.

So that's me and my family. 

Today Callum is very popular; everyone shouts him and goes out of their way to high 5 him. So I refuse to wallow in sadness, because of his Down's syndrome. He’s bloody gorgeous, and our lives wouldn't be the same without him. I’m a positive person anyway. Always look on the bright side of life. Cal does too. A lot of negative people used to say to me, ‘It’s all right while they are little.’ But no, you see it’s still alright now that he’s a man; still adored by all of us and living his life to the full.

Karen, thank you for sharing you story.

@copyright No part of this blog can be printed without the author's permission

1 comment:

  1. I really enjoyed reading about your lovely family Karen. I'm sat here with my morning coffee feeling all heart warmed and positive.

    After a rather negative day with my own special needs child yesterday (The care assistants fault not hers!) I'm so glad I started today with your lovely little family.

    Your kids are a credit to you and your husband and you're quite right - Callum is "Bloody gorgeous" :O)

    A great start to my day, Thank you for sharing.

    All the best

    Kimmie X