Most parents are already natural advocates for their children, but when your child has special needs the pressure is on to be the best support system you possibly can. I remember after my son’s first operation I met a lovely mother who was also in hospital with her baby. She explained to me her baby’s condition and how she felt in intensive detail, which left me feeling really emotional and a little sad if I’m honest. She smiled throughout every sentence and had such a positive outlook, while I on the other hand was just picking up all the negatives from the conversation. When she picked up on my awkwardly distressed face she began to fiercely praise all of his accomplishments to the point I almost felt rather silly for showing any distress in the first place. That day I learnt my first lesson on how to interpret my son’s special needs in my mind. I was so wrapped up with the struggles that came with this new world I had stepped into and occupied myself with trying to change things that were unchangeable.
Outwardly and openly make a big deal out of their achievements because you as a parent need to hear it coming out of your own mouth as often as possible as much as your child does too. Your child also needs to witness you speaking highly of them to others and boasting about all the amazing things they are able to do. This will normalize their special needs in a society that unfortunately is still not well informed when it comes to this area. It will also teach them not to hide or shy away from who they are. Your child will feed off of your confidence and ability to question, discuss and at times argue when needed for their rights.
One thing that makes this journey extremely easier is the support and assistance of those who share with me the care for my child. You won’t see eye to eye with everyone but it’s important to always remember that it’s not about you and so long as that person has your child’s best interest at heart then you should maintain a good relationship with them.
Know your rights
In order to know your child’s care needs have been met you need to get clued on their rights, such as medical equipment, education, housing and much more. It can all be quite overwhelming at first because of the constant information overload. However getting in touch with parents on various online communities will give you an additional platform to ask your questions and gain more information. It’s quite disappointing that alot of crucial information is not easily disclosed and you have to fish it out yourself. Most of the knowledge I gained was through speaking to other mums then exploring more in detail using my good old pal Google. In order to really know what there is available for your child out there is to take charge, rather than relying on being presented with everything you need.