Wednesday 21 October 2015

My List Of Basic Rules For Being A Parent Of A Child With Special Needs

There are some basic rules I have made along the way, and as time has progressed, the list I created grew in size. Here I have written them down to share.

1) As a parent to two children with special needs, I have enough stress in my life. If you want to bring more stress to it with your attitude or drama, take it elsewhere. I don't have the time or energy for it.

2) I have a very tough exterior, and look strong and fierce, but inside I hurt much more than you could ever imagine. Be kind, and remember words do hurt.

3) I may be short tempered or give you short shrift at times, but it's not a reflection on you. It means I have more than my average stresses and demands going on, and I have to prioritise these.

4) I do have some strong opinions, but as I've grown older, I've learned not to believe that they are there to be imposed on to others at any cost, so don't impose all of yours on to me, especially if I appear to be like number 3 above.

5) If you're going to make up stories or bring along some BS, remember I can usually smell a lie a mile off. Years of dealing with professionals who are trained to talk about the cut backs in services appear as though it won't affect anyone, I have seen and heard it all. A lie dressed in fancy wrapping is still a lie.

6) I am allowed to moan about waiting times for appointments, as I have to attend more than many other people, and I have to be there with my special needs child, in a poorly equipped waiting room, trying to keep them calm, as the clock ticks past the next hour of waiting.

7) When your child is looking at my child, don't be embarrassed. Use the opportunity to answer your child's questions, or explain in basic detail about my child's disability. It builds a strong foundation for your child, for when they meet another child with a disability, and takes away the 'scared' and 'different' factor. If your child wants to ask me or my child a question, allow them. I will always be polite and friendly to those with questions - educating about disabilities is very important.

8) If you choose to make a rude comment direct to my face, my child, towards my direction, or gossiping, be prepared for me to educate you in manners. I will never swear or shout, but you will know I am not going to allow your ignorance to perpetuate any further.

9) When I smile (which I try to do all the time), know that it may be hiding the pain inside, be it mental, emotional, or even physical. I have had many comments made about how I always seem upbeat and happy - I do try to look on the bright side, but I also don't want to look miserable (it ages me!)

10) I will grab my child free time with both hands. Be careful if you offer me a few hours respite (or even a few nights - please!) as I  may just rip your arm off in the process of saying "yes please, whoopee"!

11) If I don't reply to your text/email/voice mail immediately, even if you've seen me 'online'  please don't take offence. I have a lot of things to do, and just as I've finished the end of a list, three more lists appear. I do forget, but it's not because I am not bothered or couldn't care.

12) If you're going to use passive aggressive tactics on me, I really don't have the inclination to interact with you. Be upfront and straightforward. It saves time.

13) I do try to please everybody, it is my nature, but again, as I have grown older ( thanks wrinkles for showing me that in my reflection) I have to remind myself that my all round health is more important than making sure everyone is happy (children aside obviously as they will always come first).

14) A simple gesture of a kind message, or an offer of a cup of tea means a lot. If you'd like to upgrade that kind gesture to me, let's say a bigger house for free, then I of course will accept. It would be rude to refuse!

15) If you ever feel awkward about sharing your (non disabled) child's achievements with me, don't. I love to hear about your child's news. We are all parents after all, and should always be proud of our children.