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!