In the last couple of years I have had to come to terms with the diagnosis of my boy as having special needs. I have been walking through the fog of discovery ever since, usually taking one step forward and two steps back. I have been extremely fortunate that I have a wonderful family who provide great moral support even though none of them live within driving distance, a steadfast group of good friends, and that I have the skills to research and find the information I need. I have also had to learn a new set of skills and shift my thinking dramatically about so many parts of my life, so I thought that if I shared a few of those discoveries here it might help someone else who ends up in the same boat.
1. You have to become your child’s advocate. There is no one else in the world who knows your child as well as you, and who has more right than you to stand up for what is right for your child. If you aren’t comfortable challenging the authority of teachers, principals, doctors, or your own family, it is time to learn. Challenging them doesn’t need to be aggressive, but it does need to involve questioning whether there are other options, whether factors that affect your child have been taken into account, and whether this is in the best interests of your child.
2. There are laws to protect your child from discrimination, but the only person who is going to remind anyone about them is you. Become aware of your rights and your child’s rights. When the school says ‘oh he/she can’t join the class to do (such-and-such) because he/she will be (insert any myriad of reasons)’, don’t agree and apologise for the inconvenience that your child has caused. Instead ask what reasonable steps they could take to include your child in the activity. Often just by asking the question they will be reminded that they have a duty to try and include your child, and will take steps to do so.
3. You cannot do everything yourself. No matter how independent, strong and resilient you think you are, when you have a special needs child you need to make sure that you ask for help when you need it, or accept an offer of help when it is made. Your child needs to have other people in his/her life that they trust and are comfortable being with, and you need to have people that you can leave your child with, knowing that they will be cared for and looked after.
4. You will learn to appreciate little things that make life good. I used to think in terms of a good week, or a good month. Now I celebrate a good hour, and sometimes even just a good decision about something small. Being able to sit and drink a good cup of tea in one sitting is worthy of a celebration isn’t it?!
5. You will become very good at making apologies for not attending events. I have lost count of the number of times I have had to give last minute apologies, not accept an invitation, or rearrange plans because I know that I need to stay home and not disrupt (further) our routine by going out. I used to feel embarrassed or awkward about it. Now I just say “I am very sorry but a family commitment has come up and I won’t be able to attend’, and no one ever complains to my face. It is about establishing your priorities – what is more important – your children or your social obligations?
6. It is okay to trust your own judgement. I recently took my children on a spur of the moment holiday to Hawaii. (I know – crazy stuff!) If I had thought about it for too long I probably would have listened to all the warnings about travelling with my son, and what could go wrong. But instead I relied on my own judgement that I could manage the situation for him, and for his sisters, and although I began to question my own sanity on the overnight flight there (when no one slept and he was becoming agitated at the sound of a toddler crying) it turns out that I was right. By taking everyone’s needs into account we had a lovely holiday that was much more stress free than life at home usually is!
7. You have to look after yourself. This one is probably obvious to many of you, but it wasn’t to me, and I learned the hard way what happens if you don’t read the warning signs. I had a breakdown/burn out at the end of last year that has forced me to learn what happens if you just keep going without caring for yourself. Whether it is having time to read a book, catch up with friends, have a hair cut, go for a walk – something that soothes your soul, and re-energises you is essential if you are going to be a good parent.
8. Special needs kids fight with their siblings just like other kids. My boy and one of his sisters argue with each other a lot. It is loud, it involves lots of whining, and it drives me crazy. But I have to remind myself, and everyone else, that this isn’t because of his condition – this is standard sibling stuff going on. And in the same way, the two of them will play together for hours without a cross word and get angry with their older sister for interrupting the rhythm of their game. Sometimes kids are just kids.
9. You will get to know all sorts of amazing new people. I have become friends with other parents of children with special needs who I would not otherwise have met which is great for support, but in fact, because my son looks at the world in a different way, he talks to people I would never think to engage with. I have lost count of the number of times we are at a shop and all of a sudden the lady at the fruit section is chatting to us about her life, or at a camp-ground and we are invited to join a camp-fire because they have met my son, or at a park and the other parents know that I make and sell things, thanks to my greatest advocate.
10. You will learn to laugh at yourself and with your child in a whole new way. Okay, so maybe that is because if you don’t laugh you’ll cry some days, but laughter is good for us, and if you can remember to laugh at the ridiculous, everything feels so much better as a result.
If you have any points to add here, please feel free to do so by commenting!