Its been a while since I have felt able to put pen on to paper. The last year has been one of the most difficult I have had to face in a long time. The loss of freedom, of structure and my own self worth. Having been diagnosed with Non Epileptic Attack disorder I have had to take a step back which has left me some days with a feeling of failure and morose. I feel guilt even more keenly as now not only do I have disabled children to care for I have had to step back and take time for myself.
I have always been someone that takes what life throws at them and somehow tries to make the best out of it. Raising children with disabilities and special needs, a marriage break down and reconciliation, retraining in a new career to fit around my children, meeting new people, asking for help are all ways that I have tried to make the most of who I am and what I have to offer and turn it into something good.
The last year has had a major effect on that ethic. I use to think I was invincible, there was a never ending to do list in my brain. I had places to be, appointments to do, I was running the kids around, working and being a mum. Now I have to rely on other people, my children have had to learn to do some things for themselves and I feel that I am only living half a life. That sounds sad and pathetic but when you are raising children with disabilities your life isn’t your own, I felt I had purpose, I was the primary care giver and with the flip of a switch this has all changed. That said I think my girls are amazing, its been a long road of getting use to sudden changes in routine which has lead to behavioural issues, thrown into having to become more independent before they were ready but they have struggled, overcome and never ever cease to amaze me.
Is this a bad thing?
To be honest the monotony of routines, going it alone to appointments, the never ending routines that my children had to work through each day was getting me down, I just did not want to admit it. I didn’t like to ask for help, I didn’t want to seem weak….. but in the end I had that choice taken away from me. My brain decided enough was enough and that it would start re booting when ever my emotional state got to high. The theory is that some past event has an emotional tag attached to it so when I started to get stressed out the emotion would take over and re start my brain. The daft thins was I could be hoovering, in the middle of an challenging episode with one of the girls or about to fall asleep, there is no rhyme or reason for it.
Why am I writing now?
Do not go it alone!! My best advice for any parents out there raising children with special needs and or Disabilities is do not go it alone. You never know when you are suddenly going to need someone else’s help. Yes its hard to get professional help, yes families are unique and sometimes difficult and you may not feel you need a support system, but you do. Wether its support groups on Facebook, websites, specialists, group meetings, what ever it is if its there use it. Our girls have hearing loss, ADD, anxiety, OCD and possible ASD, and there are some amazing charities out there mostly set up by parents who have been where we are and are willing to share. I have met some lovely people through groups such as the NDCS and ADHD groups and I don’t think I would have managed this last year if I didn’t have a support network in place.
As always am here to chat / share if you would like to get in touch. Next time….. ADD and not afraid of it
XX Leanne XX