As a parent, happiness tends to be measured by your child’s happiness. All we want is for our kids to be happy and heathy, which makes us happy as their parent.
When you have a child that struggles with everyday life more, a child with special or extra needs, happiness is measured differently. Small successes, progress, a good day, a calm day, a heathy day, all plays a part in our happiness.
Happiness for parents with special needs
I read one of those memes on Facebook recently about how people view “special needs” parents. It said people think you are brave, strong and amazing. It said that in reality you may be really determined but exhausted all the time.
Determined is a word the stood out to me. I don’t think I am brave or amazing but I know I am determined. Determined to give my son the best life I can. Determined to give him every opportunity that his siblings have. Determined to make sure he is offered all the help and guidance he needs to succeed from myself and the system.
My son recently turned 10 years old. He has a range of needs and disabilities that effect his ability to manage life the same as other 10 year olds. His communication, anxiety and learning difficulties are currently his biggest struggles.
I had difficulty getting pregnant and was told because of a previous medical condition that it may or may not happen. When it did it was hard not to view my gorgeous wee boy as my miracle baby. After a stressful pregnancy and birth, he was here, perfect in every way. I remember wondering what his life would be like and daydreaming of how I would give him the perfect childhood.
He was slow to develop but being my first born, I trusted everyone when they said he was just a slow boy.
It wasn’t until he was just about 2 years old that I just knew there was something wrong. However, it was another 2 years before he was formally diagnosed.
During this time, I remember fighting.
Fighting the system, determined to find every resource available to help him. Public and private, we tried all the therapies we found and have continued to do so. He has made amazing progress in all areas and every day I feel proud of how hard he works.
I have times of grieving.
Grieving for his life that I had wished for him. Grieving for his unknown future. Will he be able to have his dream job? Will he marry? Have children? I allow myself to grieve, I learnt a long time ago that part of my journey to feel strong enough to be his Mum and his person, I have to grieve and free those emotions.
Managing day to day life with a child with extra needs is hard.
I don’t work… can’t work outside our home. It’s been 10 years and my life is still being just his Mum. I have to available to him at all times, although he goes to school and is happy to be there without me, because of his struggles with fatigue and anxiety, he can need my support while there.
Routine is an absolute must.
Sleep is an absolute must. People don’t get it. We get invited to dinner or out in the evening with the kids and we can’t. His whole world turns upside down when his bedtime routine isn’t followed and he doesn’t get his full night’s sleep.
Being a parent to a child with extra needs is lonely.
Your friends and family with “normal” children don’t get it. But he’s made so much progress, he must be getting better? When will he talk normally? Will he ever get better?
I feel I am perceived as that brave and strong Mother the Facebook Meme promotes. Maybe that is the case because I face each day determined to give my son the best life I possibly can.
Thankfully I do have a small network of people between close family, friends and the school community that “get it” and offer understanding and support.
We are also lucky in New Zealand to have many online support groups for parents.
Then there are times of feeling grateful I can cope with life.
This always comes with guilt, feeling bad for those parents that have children more severe than mine. I don’t know if I could say they are all strong and amazing but I do know the ones I have meet are.
They also have the determination to do what they can for their child and the positive attitude to focus on what is important.
I try and keep my focus on the amazing achievements that he makes, every day. I don’t compare him to anyone but himself and seeing him progress with things he has struggled with makes me happy.
Seeing him push himself a little harder each time he tries, seeing him take a deep breath and try that thing that makes his anxiety peek to panic level, seeing him smile and start every day feeling happy and positive.
I am a parent of a child with special needs and I am so lucky that I have my gorgeous boy to teach me that although life can be hard, if you have a positive attitude, life can be great.
When am I at my happiest? When I see my gorgeous, blue-eyed boy, smile and love life like he does.
For more expert advice, check out our Learning Difficulties section.