8th November 2018 Me
Earlier this week, we heard from one mum about the real impact having a disabled child has had on her marriage. Today, we are offering some advice from someone who mentors parents with disabled children through her Facebook group, newsletters and workshops.
Aimee Mann has her own experience of raising a disabled child and this has inspired her to start Aimee Mann Mentoring. She works to help other parents advocate for their child successfully whilst still looking after their own health and wellbeing.
A bit about me
I have been with my husband Ollie for seventeen years, married for eleven. We have three children, Freddie who is seven and has an extremely rare de novo genetic condition, TUBA 1A, Bella who is almost six and Jago who is three years old.
Once we started talking about having a family, I can clearly remember walking our dog and saying to my husband, ‘I need to know we are committed to each other and that we both really want this. If we find it a challenge to conceive or we have a disabled child, I want to know you won’t walk away.’ Looking back, I wonder if I somehow knew we would have a child with special needs? Of course, it isn’t possible to know the future, but it was a question I asked nonetheless.
At my 20-week scan we found out our baby would have special needs but no-one could give us a prognosis. We had no diagnosis and this remained the case until Freddie was almost five years old.
I am in a very different head space today and so are we as a couple, in comparison to the early days. When Freddie was about two years old, Ollie said to me that at times, it was so bad and the grief so much that he thought we would divorce. That was such a shock to me at the time, but I can see how he felt that way. We weren’t connecting or having any time to ourselves. It was like living in a parallel universe. We talked all the time but mostly focused on all the challenges and sadness we had. I spent a huge amount of time researching symptoms, treatments and therapies. I was all consumed with Freddie. I wasn’t playing any real part in being a partner. I don’t feel guilty about this because, quite honestly, I am just human. Fallible and inexperienced in the situation I found myself in. No-one was to blame but it was a joint responsibility to work on our relationship. I feel lucky that we hung in there had been together for quite a number of years prior to having Freddie. We had already been through some huge life events together and come out the other end.
Freddie is now seven. Although my husband and I are definitely working as a team, communicating and have more time for ourselves, it isn’t easy. We are constantly exhausted and stressed. I do however, as a priority, make sure we have fun stuff booked into our diary to look forward to. We both exercise now and have respite when possible. A release from the daily challenges. I’m always packing way too much in but it’s a must to keep us going.
There has been some research into families where there is a child with autism. Sigan Hartley, Assistant Professor of Human Development and Family Studies at University of Wisconsin-Madison’s Waisman Centre, said ‘There seems to be a prolonged vulnerability of divorce in parents of children with autism.’ The research shows that there isn’t much difference in divorce rates of parents with typically developing children versus those of a child with autism, until the child reaches around eight years old. At that point the divorce/separation rate increases.
Although this study was autism specific, I don’t think it matters what your child’s diagnosis is, it’s the cumulative stress that you endure which can break you. The shock of living a life you didn’t envision and the battering your mental and physical health can take when loving and caring for a disabled child. When Freddie was little, I used to think, ‘It will get easier if he can learn to crawl, walk, talk, eat independently…’ Essentially, some of that is true but there are so many areas about his care I hadn’t even considered. I think, if I had considered them all, my mind would have imploded. The realisation that Freddie may well live with us forever and our plans for our 50’s are unlikely to be even remotely possible, is stark. Worries over who will care for him when we are gone and how we will afford the care he needs loom constantly at the back of my mind. As Freddie approaches age eight, the stress and the fear isn’t going anywhere but we have worked hard to build strategies to help support each other and navigate our way through.
So how can we support a lasting marriage?
One of the biggest reasons cracks start to form between partners when caring for a disabled child, is blame. Blaming either yourself or your partner. This can lead to feelings of resentment, a lack of acceptance and anger. All of these emotions are hard to work through when you are suffering. Often grieving the life you thought you would have. Sometimes your partner may be in denial about your child’s disability.
Having a disabled child gives any relationship huge challenges and this requires an extraordinary amount of dedication and hard work from both parties to make it work. Never underestimate how difficult it can be but have faith it is possible to live a joyful life. The difficulties will often be magnified when your child has special needs due to the nature of the decisions you have to make. It might not be which after school club they should join but more, which life-saving operation or therapy is the right choice and how to raise the money to get it.
Remembering what is important
In my opinion, the most important element is communication. Communication, respect, humour and team work. Getting outside help such as counselling can also be incredibly beneficial and definitely nothing to be ashamed of.
Learning how your partner communicates, learns and digests information is essential. How they process things is probably different to the way you do. I like facts and figures, I’m a visual learner and I like to make speedy decisions. Ollie sometimes likes to take his time working through things. I will often start to ‘drip feed’ information ahead of decision making time so that we have enough time to talk and decide together without it getting heated. Sometimes I write him an email, telling him how I feel so that he can digest it and think about it before we see each other. We don’t always get it right, but we try every time and we say sorry when we get it wrong.
I have also, over the years, come to realise that we each have a different skillset. Utilising your individual assets is important. You don’t both have to make every decision or attend every meeting or read every letter as long as you talk through the big stuff. Keep the communication respectful.
It takes patience and dedication, but it is worth it. We all want the best life possible for our children and for ourselves.
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