Intellectual disability can be very difficult and challenging. It’s hard to understand, comprehend and give the appropriate help to your child, yourself and your family. It can be daunting. Some parents are on high alert all the time, they know the triggers, and they know what can/could happen next. They know what to do and more importantly what not to do.
No intellectual disability is the same and there are no one rule suits all. No one with the same condition has the same intellectual disability. It’s more than complex, it’s a minefield.
Having dealt with physiologists for over 16 years it’s very hard to get your views across without sounding like it the parent who has the issue. Always keep your passion for your child and it takes a very good and experienced therapist to have the ability to work with you both.
I have come across one psychologist in my years that I felt gave me a better understanding of David and what to do that actually worked. It was difficult, we all had to sing from the same page (family and school) we could not do all the corrections together, it had to be broken down and take one at a time, we had milestones, we had sideward steps, we had to try another angle, it was not easy.
I had to accept that there are certain things that David cannot change, and it’s up to us to change ourselves and to accept that. That is very hard to accept especially for siblings who as teenagers think they know better. However, much you try to make them understand)but then they are young and I’d probably have been the same if it was my brother, probably less understanding if I’m being honest. Time will change that I know for certain.
The key ingredient is Patience. Why? Because your child may not even understand that there is a problem, to begin with. Maybe your child does not understand the consequences.
Here is something that has worked for me in the past.
Make a list of the issues that are causing problems for you and your child. Prioritise this list. Meet the physiologist on your own first. Explain where you are coming from in regard to this behaviour. Ask for help. Let the physiologist then meet with your child to see where this is coming from and if they are any good they should be able to ask the appropriate questions so they could see by the child’s answer how they behave.
This could take a few sessions but be patient.
Ask the physiologist to contact the school and/or meet with members of the family, etc. to see how we can change this behaviour together. Don’t jump from one behaviour challenge to another, stay with one at a time until it is rectified or in some cases the best it can be.
Remember you and your family may have to change and this can be difficult as you could be going against the grain. Stick it out and take note of even the smallest change and stay in contact with the physiologist, go back to the school ask them what changes have been made, has there been an improvement, if so how can we now move that to a better level. Keep working at it.
If you find no improvement go back to your physiologist take sideward steps again maybe try a physiotherapist. But don’t let it go. If you don’t change behaviour at age 7 it’s not so funny when it’s happening at 17! It’s more ingrained then. And believe me, it can continue unless looked at. It doesn’t go away or the child “just grows out of it.”
Parents work has to be done and at the end of the day, the buck does not land with “what services were offered” to you or “this therapist just didn’t understand your child” the buck really stops with you. I know it sounds hard and that’s why I’m constantly saying look after yourself and have the energy to continue on the journey. As we all get older, I am hoping we can all look back and have the comfort of knowing we did everything we could to help our children.
I’m here to support you as best I can. Don’t hesitate to send me an email and I will try my best to give you my views that may or may not help your situation.