Clare, Oscar, Archie and Iris

Name: Clare 

Children: Oscar (10), Archie (8), Iris (6) 

Location: West Didsbury

Expectations of Motherhood: As I was the first of my group of friends to have a baby, I was pretty naïve about what I was letting myself in for. I was never particularly career focused and always knew I wanted to be a stay at home mum if possible.

I imagined the sleepless nights and all the hard work would all be made worthwhile by this little bundle of joy that I would love with all my heart. I imagined that through hard work and lots of love I would produce a beautiful family that I would be proud of every step of the way.

Reality of Motherhood: It has turned out completely different to how I imagined. My eldest son, Oscar has been diagnosed with high functioning autism (Aspergers) along with ADHD and was (and continues to be) so much harder than I ever thought a child could be. As a baby, he was irascible, grumpy, angry, unsettled and generally unbearable unless he was being carried. He would not sleep and would not lie on his own for more than one minute without screaming the house down. I knew babies could be difficult but he was just different to other babies. It was obvious from the start that my idea of the perfect family was not going to come to fruition. 

Although I had two more children soon after who are calm, quiet and seemed in comparison very easy, Oscar’s behaviour continues to dominate our lives. We are restricted to where we can go as he gets angry and stressed very easily. He can also be incredibly unkind to his siblings and is unable to see that his cruel behavior impacts on all around him. I am very fortunate to have a soul mate in my partner as I couldn’t have dealt with life without him. As many parents of autistic parents know, it can put a huge amount of strain on your relationship dealing with this behavior day in, day out.

As a mother, I knew I would be a cook, cleaner, nurse, playmate, confidante, friend and teacher, but I suppose I didn’t think that I would have a child with disabilities. It’s hard to understand someone’s behavior when it’s so different to your own and your other children’s. It’s hard to love someone who doesn’t look like they want to be loved and mostly acts like they don’t love you, and who flinches when you hug them. It’s hard to love someone who hurts your children, who belittles them and who constantly berates them, but in the end you have to, because they are your child, your blood - they are part of you. I never thought motherhood would be this hard. 

The reality of my perfect family has been shattered as living with a child with a disability completely takes over you and your family’s world. In reality, I feel like I ‘parallel’ parent my children. There are rules that Oscar follows and if he does, we are eternally grateful. The other children are expected to follow these basic rules and perform above and beyond because this is what typically developing children should do. Although it’s hard to explain to a 6 year old why she has to do something and her 10 year old brother does not. It has made our younger children patient, kind and thoughtful around children with difficulties and I hope this difficult start, dealing with a brother with disabilities will make them special people. This is what I want out of motherhood – to bring up kind, considerate and likeable people.

Taking your children home for the first time: It was daunting bringing Oscar home for the first time. Suddenly this wasn’t me playing a game of happy families, it was real life and I now had this tiny thing waiting for me, who relied on me and needed me. Scary!

When the Archie and Iris came home, they just slotted in to every day life as if they were always there. I often thought, ‘why did I find it so hard first time round?’.

The best/worst advice: I have a child who has always been very difficult, appears badly behaved and is almost impermeable to discipline. People would judge me without knowing what I was dealing with, they would offer advice on how to deal with Oscar without understanding the difficulties he faced, and proceeded to advise me on how they would deal with him. Most advice I received that related to Oscar wasn’t useful as people couldn’t put themselves in his shoes (or mine).

The best advice I was given as a mother was by my own Mum (as is often the case). She told me that I was a warrior and that I was given Oscar because I was strong enough to deal with him and with all the other people who would judge me because of his behavior. Her advice was, and is, to be strong and to believe in myself because I am going to help Oscar to become a kind, functioning and competent man. I just hope she is right.

The hardest parts of being a mother: Its relentlessness!! The fact that you never really feel that you live your life for yourself anymore. It’s a total act of selflessness which can sometimes be overwhelming.

Sometimes I feel like I want to give up and let Oscar continue on down his path of destruction and selfishness, but I know that I can’t. I have to keep plugging away at him, trying to set him on the right path and showing him that I love him no matter how he acts. But it’s so very hard. 

The irony of having a child like Oscar is that he finds it hard to put himself in other people’s shoes, but it’s also very hard to put yourself in his shoes and understand his world – it must be really hard being him and my heart melts when I think how hard his life must be. I wish I could make it easier for him, but I can’t and I find that hard too.

The best parts of being a mother: Having had a child who doesn’t like affection or being hugged, I love the affection that I get from my other children. I love the fact that they need me and want me. I am so proud of them all in their own ways, with their individual characters and infuriating ways and I look at them and think ‘wow, I made these amazing people’. No feeling in the world comes close to being a Mum.

Although I have focused on negatives of having a child with disabilities, there are plenty of amazing things about Oscar that I wouldn’t change for the world. He is a funny, quirky and very intelligent person who makes me laugh and cry in equal quantities (almost!) and I honestly wouldn’t change him for the world. The things that others take for granted with their typically developing children are often the best things for me as a mum. When I told him that we were going to watch a United game, he gave me a hug unprompted with proper feeling. That was one of the best days for me. 

Has becoming a mother changed you: I don’t think so. I have always been capable, competitive, organized and loving and these are the tools that I use every day being a Mum. I am probably a little less self obsessed and a lot more tolerant than I used to be. But I am still me just with less time on my hands.

Hopes for your family: For Oscar, I hope he is able to be independent, to have friends, to be liked and to be happy. I wish the same things for Archie and Iris, but I know these things are much more achievable for them.

I hope that they love each other and look after each other and that they are kind and compassionate. I want people to love them as I do. I hope that their childhood, living and dealing with a disability, will shape them and help them to become good people. Then I will feel like I have done my job as a mum.

What advice would you offer to new and expectant mums: Although it seems that everyone else is having an easy ride, finding motherhood easy and that their child is perfect (ie. that their child sleeps through at 6 weeks, never cries, eats everything they put in front of it, entertains itself for hours in the morning when it wakes), just remember that most people are lying and everyone is finding it as hard as you, its just that you’re being honest! 

Jayne, Ben, Connie, Tim and Poppy

Name: Jayne 

Child: Ben, 12 Connie, 10 Tim, 7 and Poppy, 5

Location: Morley

Expectations of motherhood: I don’t know. I didn’t have any expectations because we kind of fell into having our kids. We’d moved to Morley in early 2000, and at the same time a friend of mine was struggling because her partner had walked out on her. She had a baby daughter and so I spent a lot of time with them, helping out. I loved looking after a baby and thought, ‘I could do this’. So we decided that we wouldn’t ‘try’ to have a baby, but we wouldn’t do anything to avoid it happening.
Reality of motherhood: I had four totally different pregnancies and on the whole enjoyed being pregnant. With each I had totally different experiences - the strangest being that after Ben my feet went up a size and a half! I also had gestational diabetes with Tim, but not with any of the others.

My first experience of labour was quite a funny one. Phil had just come in from a night shift and I’d started with contractions. The hospital insisted on sending an ambulance because our car was in the garage being fixed - it seemed so dramatic. The labour was going quite smoothly, but they wanted to get the contractions coming stronger so they decided to put me on a drip. My strict instructions were that I did NOT want an epidural - I hate needles - but eventually I was begging for one. By this time the contractions were coming thick and fast and so the anaesthetist couldn’t quite manage to get the needle in. I’ve got 7 little scars on my back where he failed to get it in. Eventually it worked, things progressed well and I could finally push. I remember little details like the fact that the Uefa cup was on the TV, but I was so woozy on Gas and Air. I’d alternate the demands of, ‘Water!‘ then ‘I’m going to be sick!‘. It really was a comedy labour. They had to steer Ben out in the end - I was desperate for him to be out! They used a Ventouse and I remember this tiny little midwife securing the cup, but then whilst pulling hard on Ben’s head, she lost suction and she ended up flying across the room. They used Forceps in the end and I had SO many stitches - it felt like it was going on forever.



Connie came two days late. We’d been at a BBQ at Phil’s parents house and I’d tripped over a hose pipe. After the fall everyone I’d insisted I went to the hospital, so I did, but I ended up staying in their till she’d been born. It was discovered that my blood pressure was through the roof, so I wasn’t allowed home because they were worried it was pre-eclampsia. They induced me after I requested it and I gave birth in the most beautiful labour room.

With Tim, because I had diabetes they wanted to induce me on the due day. He came really quick with just gas and air. I remember he had a really big head! In fact he’d never speak to me again if he knew what my first words to him were.

Strangely, Poppy took longer to come, but by the time she came I didn’t even need gas and air. Unfortunately I had a bad experience with a midwife when Poppy was born, and it has stuck with me. I’d been on blood pressure medication in the hospital and it’d ended up affecting Poppy’s blood sugar, but no-one had warned me that this was likely. Immediately Poppy was taken away to the Special Care ward and ended up being tube fed with my breastmilk for three days. I was so upset. I was surrounded with mums with their babies whilst I was on my own. No one had warned me that it might happen and it really affected my whole experience of having Poppy. If I’d have been warned then I think I’d have dealt with it ok. 

When Poppy was 3 or 4 months old my eyes started going funny. I was referred to the eye hospital. It had become dangerous to drive. The day that things became worrying I was putting toys in the toy box and I realised I couldn’t see my hand. I rang my mum in tears. Instead of waiting for the referral which seemed to be taking forever, I went to the emergency eye hospital and was diagnosed with Uveitis. They gave me an injection in my eye and I was put on a very high dose of steroids, and in addition 3 different types of eyedrops. I had to stop breastfeeding immediately because of the steroids.

The Uveitis (inflammation of the Uvea) was caused by an immune system overreaction, but it's not always diagnosed so easily. In hospital I had so many blood tests and scans, and in the end it was discovered that the Strep virus had caused the Uveitis. The treatment is like a low dose of chemotherapy and as a result of the illness I’m on immunosuppressant drugs for the rest of my life. If I’d have left it a couple of days I would have gone totally blind.

Once the Uveitis cleared up I was fine, and I can drive now. I felt so reliant on other people when my eyes were bad and I hated it. Driving at night was impossible for a long long time, so in the Winter months I felt quite trapped. 

From quite early on when we started to have the kids, we’d decided I would stay at home and look after the kids, and Phil would work. It became clear that work for me would be practically impossible because of the age gaps between the kids, as well as childcare costs and the general logistics. Now as poppy gets older, I work in school as a teacher’s assistant and part time admin assistant.

Motherhood did come quite naturally to me, but I did find going from one child to two kids the hardest transition - having a baby and a toddler was really demanding. After having two children the 3rd and 4th just slotted in though - it felt very normal.

Unfortunately having four kids means mountains and mountains of ironing - it’s a nightmare! With regards to trips out we can’t do as as we’d like. We don’t have the money for holidays abroad, so things like that have to be quite low key. My parents have a trailer tent so we all go camping as a big family and it does work really well. With after school clubs like beavers and brownies, I’m constantly juggling and trying to work out a schedule. Logistics wise it’s not possible for all the kids to do all the things they’d like to.

As a foursome they generally get on - more than they fall out anyway. I try to teach them to be nice; people that others want to be around. The big two are really helpful - the little two not quite so much. In fact I’m surprised my door frame is still in one piece, it gets slammed so much.

Taking them home: It’s hard to remember.

A tiny little thing curled up in the car seat. A cot in the bedroom and the moses basket downstairs and pushchairs and car seats littering up everywhere. It took time to work out how to make life easier, we wised up eventually and put a travel cot downstairs which doubled up a a play pen so that I could get stuff done.

I remember watching BBC news 24 at 3 in the morning whilst feeding. When Ben was little and Phil hadn’t gone back to work yet and I was so tired that I was near having hallucinations I’d been feeding so much!

With the rest of them it’s been so nice to introduce the older children to the little ones in the hospital. We’ve been so lucky that they’re really good with new siblings and there’s no jealousy between them.

Best advice/worst advice:

Some of the worst advice that I’ve heard is, ‘Don’t feed them bottles and breast at the same time because they’ll get confused’.

I would breastfeed Connie for 3 hrs solidly and she’d still be hungry. Eventually my mum said, ‘Just go to Asda and get yourself some milk and a bottle’. There is nothing wrong with mixed feeding. There is nothing wrong with bottle feeding! And that night was the best night sleep I’d had in a long long time.

Also, it’s all very well listening to the advice: ‘Don’t worry about cleaning up’ and ‘Sleep when they sleep’ but it is a little trickier to do that when you’ve got a big family.

Hardest parts of being a mother:
When they’re all being horrible and constantly demanding - it’s the low level naughtiness that drives you mad. It grinds you down. You get so fed up of hearing your own voice and telling them off, but you don’t want to just leave them to it because then they think they can get away with it.

Meals out are still pretty hard with the younger two. Tim gets giddy and Poppy is very wilful. She’s got ‘character‘ - she knows what’s right, but doesn’t necessarily choose to do the ‘good‘ thing and so she is hard to deal with sometimes.

Also, if they’re being picked on at school, that’s hard. You just want to protect them, but you can’t fight their battles for them. You have to let them work it out for themselves.

I wish we could take Connie further with gymnastics - she’s amazing - but we don’t have the time or money to devote to it. It is really hard, but we have to be fair and spread activities between four kids.

Loss of identity is hard too. When you have kids you’re no longer called, ‘Jayne‘ - you’re known as ‘Ben’s mum’, ‘Tim’s mums,’ etc. You also have hardly anytime on your own.

I do make time for myself though; the evenings are mine and I’m not working full time yet, so Monday is my day off while all the kids are in school. It’s nice to have no nagging, and a day where there’s no telly. Just reading books, listening to music and doing puzzles. It’s absolute escapism. I love fantasy books, they allow you to get away from real life - there has to be a bit of magic in there somewhere.

At school I played french horn (really well), but it dropped off. Then I heard a couple of years ago about a community orchestra at a local school (for all ages). From there I heard of another orchestra - The West Yorkshire Symphony Orchestra - and thought I’d love to do some more. They told me that if I could keep up I could stay. I was so terrified of doing stuff on my own. I’ve always been that way and it took a lot of courage to do it on my own. I wanted to do it so much though, and although I was not as good as I once was, I was alright and managed to keep up. Since then Ben’s had a go at Clarinet, Connie does flute too and Poppy’s also got a good ear for music, but I don’t want to force them into it just because I like it. They’ve got to find their own ways.

Best parts of being a mother: 

The fun. The random things they come out with. Watching them grow up.

When you’re proud of something and they’re so happy with what they’ve achieved.

Tim’s good at flattery, often saying, ‘You look beautiful mummy’.

I love when they come and sit of my knee and give me a cuddle by surprise.

When they’re all getting on with each other it’s great. When it snowed they were in the garden messing around together and laughing and I thought, I’ve done something right here.

It’s great to get good feedback at school too.

I like it when I like their friends too. When they make nice friends it makes me feel secure that we’ve helped bring up nice people.

The kids are just so different, and it’s so interesting to see the bits of me and Phil in all of them. Ben’s bright but less motivated - just like me. He loves reading too. Connie’s like Phil - bright and motivated. She’ll work and work and work - she’ll be successful. Tim has a little bit of an obsessive nature - video games in particular! Poppy is a real tom boy - she doesn’t want to be a girl.

A teacher who taught me saw my mum recently and asked what I was doing. 

My mum said, “She’s a mum of 4, she’s doing a great job and I’m so proud of her”.
That made me really happy to hear her say that. For something I accidentally fell into, I think it’s going pretty well.

Hopes for your family: To grow up all in one piece. Be happy with what they’re doing and stay friends in the future.

When I first started going out with Phil, I remember going to his parent’s once and seeing all of his siblings (he’s one of 7) coming and going. I loved the happy chaos of Phil’s mum’s life. It was total bedlam, with Phil’s mum in the middle handing out bacon butties and looking after everyone. I remember thinking at the time how wonderful it was. That was what I wanted. His family are such a great example because they never fall out for very long and just sort stuff out quickly and without fuss. I want my family to be like that, to be close and supportive to each other.

Advice for parents: If anyone offers to babysit say, “YES!”

Get time on your own. I recently went away with a bunch of people (through the orchestra) for a week. I didn’t know many of them well at all, but I had an amazing break. I was cut off, there was no signal or Internet and it was heaven. There was no cooking or washing for me to do and I made new friends. I was free to be myself, and nothing was expected of me because no-one really knew me that well. I was taken for who I was and I could be sociable or antisocial. I felt free.

Regarding your child’s style and dress sense, let them do what they want and so that they feel individual. Eg. Currently Poppy’s obsessed with dressing up as various superheros. I think it’s important to pick your battles, so if you’re child wants to go to the supermarket dressed at Spiderman, let them. The small things are quite easy to let go, and for the bigger you issues you’ll have more authority. If they really want to do something (and it’s safe) let them make their own choices.

If you need 10 mins, go and lock yourself in the loo....they may still knock on the door, but you’ll be able to catch your breath.

I like to leave them to it with arguments, so that they resolve it on their own.

Finally, give your children a name that you can lengthen and shorten accordingly for when you tell them off!

Extra info
The illness I suffered from can attack different parts of the body - it is called Uveitis when it’s the Uvea that becomes inflamed. Alternatively the liver can be attacked, which can be considerably more dangerous. Uveitis is the 3rd most common preventable cause of blindness, but is relatively unheard of. This charity works to promote knowledge and understanding about the disease. http://www.Oliviasvision.org