This is how it feels…4 Comments
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 developmental delays and receives speech therapy, occupational therapy and behavioral therapy. 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 you may be one yourself. We all face different things with our special 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 endeavor. 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. Hospital visits, daily therapies. Paperwork stacks up, spare time is spent researching new treatments, advocating for her in the education system. 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 Rose’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, or 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 give-up, but 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 and is what hundreds of thousands of you do everyday. 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.