Wow! This can be so very, very difficult for us as parents.
Professionals often tell us we need more parenting skills to cope better with our child’s behaviour. And they are probably right to a certain extent. We all could benefit from up skilling especially for the most important job in the world.
However only a parent with a child living with disorders such as Asperger’s Syndrome, ADHD and Epilepsy really understands what it is really like supervising our child every second of every day, except when they are at school or Kindy, and even then we could be rung up at any time to go and get them because the teacher can’t cope with our child. As well add to that not getting a minute to relax in the evenings and not being able to go to sleep until our child is asleep even if we are dead tired. Then when we do find sleep sometimes getting woken up multiple times or be up all night maybe for a few nights on end to support and attend to our child when they are having seizures. And then there are the times our child is in Hospital because of prolonged seizures and we again have no sleep and it goes on and on and on. No wonder it sometimes feels like hell on earth. We are so tired and so worn out we are just at the end of ourselves and don’t know what to do. And the problem is no one seems to understand our plight even though we so very carefully explain it over and over again and no one seems to know what to do about our situation.
At the bottom of it all is not about how to better parent our child. It comes down to 3 things – as their parent we need to have time to relax, have some undisturbed sleep, and have a break from the second by second constant supervision that our child needs every day, every week, every month, every year on and on and on and on.
So how can we get our needs met so we can parent our child in the most loving and supportive way so their needs are also met? That is the question!!! And it doesn’t have an easy answer.
If you are parenting a child with Asperger’s Syndrome, ADHD and Epilepsy or another disorder you know all this already.
So where can we go for help? First there is family. Can they help in any way? Can they care for our child for an overnight stay once in a while or for an afternoon or for 2 hours on the weekends?
There are organizations out there like Taikura Trust (www.taikura.org.nz). They may be able to offer Carer Support hours. However often this leaves us to find respite care our self which is sometimes difficult. Mycare Auckland (www.mycare.co.nz) may be a help to find respite. However, ensure the carer has the right qualifications and experience.
Other organizations that could give helpful information or help are – Disability Connect (www.disabilityconnect.org.nz), Autism New Zealand (www.autismnz.org.nz), ADHD Association (www.adhd.org.nz), Andrea Graham ADHD Therapist (www.andreagraham.co.nz) and aDapt Family Solutions (www.adapt.net.nz).
This is not a comprehensive list. If any readers know of others, especially respite services, please let us know. They could be a great help for other parents out there.