Parent Carer, Nikki’s Story

Being a carer is a one of the most rewarding things I have ever done, I’m a carer to my 3 children with additional needs, sometimes it feels weird saying that because as parents we are carer’s right, but this is another level of caring, it can be very lonely and is hard work. 

It has challenges I never dreamed I would be dealing with and most days I feel I’m just winging it, but it’s worth every second, these little humans are going to be adults one day whom I hope will be able to live the life I dreamed of even before they was born, some days I think we got this and other days I sit and cry.

Huge milestones to us are small everyday things to others. And most people don’t understand that.

The recent life event of Covid 19 has had a huge impact on us as a family in so many ways, from huge meltdowns, anxiety and panic attacks, no or lack of sleep, not wanting life to change again because we are now in a new routine and going out is now not normal and staying at home is the new life, I think trying to get back to normal old style life is going to be a massive challenge for us.

Home schooling has been hit and miss but we have used our time wisely by doing life skills which I feel are more important to help them become independent adults of the future.

I help run a group called North Solihull Additional Needs Group without this group I wouldn’t be where I am today.

I joined as a member at the start of my journey and was clueless everything was a blur, I then started helping out and joined the admin team, I have met some of my closest friends through the group and it’s like a family, I have gained so much knowledge from the group and have helped many families in return.

There should be more recourses to help family’s there is no respite for families of children with additional needs in the area and most parents don’t get any free time, as a family we haven’t had a holiday for many years due to not being able to work we are hit hard financially as most carers give up work to help support their children, this is more than a full time job and we often don’t get credit for what we do.

Carer’s often feel isolated, overworked and tired and there is no support for that even when you go to the doctors their answer is usually pills to help you sleep or cope with the stress but often all we want is some recognition and support, and to feel normal even if it’s just for one day.

We don’t get chance to feel like ourselves very often and don’t get recognised as the people we once where.

I’m often asked what do you like doing or what’s your hobby it’s been so long since I got chance to do something for myself I have forgot who I am or what I like, and I can’t answer that question at this point in my life, And I hope one day I will be able to answer that question.

By Nikki Burden

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