Parenting is a hard full time job. Theres ups and downs joy and sadness. We take on this role knowing that it won’t be easy. Its an emotional, physical and financial role. Most people take for granted that they will be gifted with a healthy child or children that they will nurture and watch them grow up into happy healthy individuals. Sometimes though that is not what happens and for some this isn’t the case. What would you do if you were suddenly faced with a disability? how would you feel if suddenly faced with the prospect of raising a child with additional needs?
Firstly what does disabled mean? if you google it lots of different names and meanings come to the fore. It can be mental, physical, emotional, sensory or developmental. Just because you see someone walking around does not mean that they do not have a disability. For me the sensori neural hearing loss that three of my daughters were diagnosed with was a much easier disability than the later diagnosis of one child with ADHD. This was due to the fact that the children were prescribed hearing aids which are a constant reminder and a visual key to there being some kind of hearing loss. This is not the case with ADHD. ADHD is not an outward disability. Many parents suffer in silence not knowing that their child could indeed have ADHD. Theres a lot of information out in the world. In my opinion its a mixed bag of good advice and bad. My personal experience has been not to google ADHD but to speak to the healthcare professionals involved with your child. For us ADHD took along time to diagnose, 4 years in fact.In this time there were lots of appointments and charts and observations completed.
As a parent already coping with hearing loss you would think that having another diagnosis of yet another disability would not have come as a great shock. You are wrong. I had gotten use to hearing aids and working them, looking after them and never really saw myself in the carer role. When our child was diagnosed with ADHD I felt I was suddenly cast in the role of a carer. The desire to do the best for my daughter was all consuming. There was medication to dispense, appointments to keep, forms to fill in, schools and other healthcare professionals to liaise with. At times i felt more carer than mum. My own emotional and physical needs went on the back burner.
For many parents like myself its a dark, lonely place. Family and friends don’t understand. You feel guilty asking others for help as you brought this child into the world and you feel its your responsibility to do everything without help. You stop going out due to the fear of embarrassment and the danger that accompanies ADHD sufferers. Having a child that has no awareness of the dangers around them or who can run of at any point and not find their way back is a big inducement to just stay home.
You don’t take the time to relax as your always on the alert. For me the hardest thing is that my child has so much energy and is constantly on the go from when she wakes at 4am until she goes to sleep at 7pm. Trying to keep the peace in our house is really hard especially with four girls.
Another massive effect on your life as a parent/carer is that you become ill. I felt sick most days. I comfort ate so that my weight ballooned. I had no energy and I was on the downward spiral into becoming depressed. I started smoking outside so that I could get away for a few minutes. All of this lead me to feeling very alone and sad.
If like us you are in a relationship this can suffer badly.You become carers, co-inhabiters of the same house but unable to keep any other attachment. You fight and argue all the time taking out your frustrations on each other. Then you start to work in shift patterns until eventually one of you seeks warmth and kindness elsewhere. It isn’t until something really profound like that happens that you start to question your ability to cope and the biggest personal realisation is that we were not coping. We stopped talking. We were not there for each other on an emotional level. People around us could see what was happening but we became so wrapped up in caring for the children we didn’t notice.
After my marriage breakdown I was forced to realise that while looking after four children on my own I was stronger than i thought i was. I realised that I could cope and that I wasn’t a failure. Somewhere along the way I found a confidence in myself. We corrected our mistakes and decided to work on our marriage. The biggest change here was making time for each other which meant letting go of the dark lonely place and coming into the light, to realise that we are both stronger together as a team and that we can be both parents and carers but most of all be a family.
coming out of the dark
Looking after your own needs when you have a disabled child is in my opinion the most important thing you can do for yourself and your family. How can you be there emotionally and physically for your child/children if you don’t look after yourself?
I started a course in holistic massage and got myself out into the world. I realised that I had an amazing support network that believed in me. Family were there every step of the way and for some it allowed them to see what we were dealing with. I also have the most amazing best friend and group of friends.They don’t judge me and they take the time to listen and ask questions. We have a laugh and have girlie nights out which means time out for me and a recharge of my batteries.
You don’t have to go out! find time for a coffee and a biscuit, watch a film or read a book. Make an effort for some ME time.
To read more see other blogs or feel free to contact me. Sometime just talking can help.