In this guest blog, Hannah Postgate gives an insight into her life as a mum of a daughter with complex learning disabilities and autism.
When Dan [Parton, editor of Learning Disability Today] asked me to write a post for the Learning Disability Today blog, I was so touched; I mean I was taken aback… he said that he thought readers would appreciate a parent’s view on bringing up a child with a learning disability.
About 1.75 million children in the UK have a special or additional need. My daughter Rosy is one of them. She is a vibrant, loving six-year-old with complex learning disabilities and autism. She has severe developmental delays and receives several types of therapy - speech, occupational, physical and behavioural.
Bringing up a child with any disorder, condition or special need is both amazing and a challenge; a challenge for the obvious reasons, and amazing because you don't know the depths of triumph and joy until you see your child overcoming some of those challenges.
If you are reading this, the chances are you know a special needs parent, or may be one yourself. We all face different things with our children and I don't claim to speak for every special needs parent, but from the ones I know, some things are pretty universal:
1. I am tired. Parenting is already an exhausting endeavour. But parenting a special needs child takes things to another level of fatigue. Even if I've had a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there. Then there are the hospital visits, daily therapies, paperwork, advocating for her in the education system and any spare time is spent researching new treatments. This is not to mention the emotional toll of raising a special needs child, which seems so much more extreme for us. I am always appreciative of any help no matter how small.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a much younger child do what Rosy still can’t, I feel a pang of jealousy. It hurts when I see her struggling to learn to do something that comes naturally to a typical kid. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Rosy, "It's not fair." It sounds petty, and it doesn't diminish all my joy and pride in Rosy’s accomplishments, but often it's very hard for me to be around typical kids. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I used to feel like an outsider around mums of typical kids. If I didn’t have such a fabulous ‘Sistahood’ of ordinary and special needs mums, with whom it's not uncomfortable or shocking to talk about Rosy’s difficulties, I would have lost all sanity long ago.
4. I am scared. I worry that I'm not doing enough. What if I missed a treatment or a diagnosis and that window of optimal time to treat it has passed? I worry about Rosy’s future, whether she will ever drive a car, get married, or live independently. I am scared thinking of the hurts she will experience being ‘different’ in what's often a harsh world. Finally, I fear what will happen to her if anything were to happen to me.
5. I am human. I have been challenged and pushed beyond my limits in raising Rosy. I've grown tremendously as a person and developed a soft heart and empathy for others in a way I never would have without her. But I'm just like the next mum in some ways. Sometimes I get grouchy, and sometimes I just want to flee to the spa or go shopping. I still have dreams and aspirations of my own.
The truth is it is hard, but I was brought up to ‘keep on trucking’ and that is what I shall do, just like hundreds of thousands of other parents do every day. It is not just our children who are amazing – we are too!
Hannah Postgate is co-founder of RosyandBo.com, an online marketplace of gifts and lifestyle products for special needs families.