I have been a parent now for almost 12 years now and in that time we have had our moments of spectacular parenting and then our not so finest parenting moments. Every parent has those. For me adding the element of special needs has definitely taught me some lessons I couldn't have learned from a parenting book or the sage advice from those of a generation or two behind me, as things are different, but from simply living my life and growing from my experiences. Life ,itself is a learning curve.
These are just things that I have found that get me through my days. If there is anything that resonates with you, then awesome. By no means is this a gospel according to me.You always want to do what is in your best interest. For me, I like to hear what has worked for other people, as sometimes you can get good ideas for something that you are stuck with.
1: Its ok to be angry. Seriously. You are fully entitled to be angry at a situation or a person. You are allowed to be angry with what has been thrown at you. The trick to anger is all how you deal with it. I don't think I have to state that there are certain ways to express anger without hurting yourself or others in the process. Talking is always a helpful, even if it is with yourself. Writing stuff down is also a good way to help vent (I write a lot, but a good percentage of my writings, I don't blog) Getting something off your mind can be a way to clear it, especially when you are angry about something.
2: Be a fighter. This is coming from a person who gets hives when dealing with any kind of confrontation. I didn't know I had voice until I had children with special needs. Being an advocate and a champion for someone will bring out your inner fighter. Pretty soon you will find that fighting spirit not only for your loved ones, but for yourself. There is nothing wrong with standing your ground when you feel it has been trampled on.
3: Remember to laugh. There are going to be things happening in your day that are going to suck every ounce of happiness out of you. I am not going even try to sugar coat that, but you have to learn to laugh and or find the humor in things. Yeah you might have a day where your sensory magnified child doesn't want to wear a stitch of clothes and are trying to shred every last article of clothing off and the last thing you need is the disapproving eye from someone who doesn't get it. I always say they are going to be the next Magic Mike or that we are naked under our clothes. Or if your child flaps excitedly over something and you get looks, " Yeah don't mind him, he is just spreading his wings, just watch him soar!"Sometimes it lightens the situation and sometimes it doesn't, but at least you were able to have chuckle. Sarcasm and wit can be your best weapon with those who are ignorant and don't get it.
4: Jealousy and Envy are ok to feel. Its ok for you to feel a bit sad when faced with what could be your life, if you didn't have the special needs component. A lot of us out there at times dream of a life where we only had to deal with not so complicated child problems. And we get frustrated, when trying to explain our life stories and problems to those who won't understand. I would love to see my 5 year old out playing with other 5 years at a park somewhere, but that isn't my reality. And to be honest, there are times when I do get jealous when others talk about all the milestones their NT children are doing, while I am over here trying to get medicine into my child so he won't have seizures.
5: Forgive yourself. Its a tough one, I know. You are going to make mistakes as you are only human after all. There is no such thing as a perfect human being. Some may think they are, but really they are not. Taking care of a person who requires a lot of love and support, drains you, both emotionally and physically, so you are bound to not be at your best all the time. Don't be too hard on yourself if you didn't get all the housework done, because you were up half the night with your child that has sleep issues or if you are bit scatterbrained as you have a lot on your plate.Keeping track of appointments to specialists and doctors and meetings with teachers, can be mind boggling and unless you keep a running flow chart of who is who, there going to be days where things will get mixed up. Dust yourself off, tell yourself you got this and push forward. You do the best you can do with what you got. Guilt is a big thing for a special needs parent. As most times we are blaming ourselves for our children needing extra love and support. The blame game we play with ourselves is a destructive one, which is why we need to forgive ourselves.
6: Keep an open mind. This goes with every aspect of your life. As much as it pains you sometimes, you have to remember that everyone is on their own path. Sometimes that path is good one, and sometimes its not. You can't expect everyone to agree with you or follow your example. Also think about that something might work for you, but won't necessarily work for them. This also helps when you are dealing with people are ignorant. Just as they seem to be close minded about what acceptance means, you have to learn to accept the fact that there are people out there that just don't care or don't want to educate themselves. That is on them, not you. Nothing you will say or do will change their minds about correcting themselves. And you have to keep an open mind about that.
7: Do not take the judgement of others as gospel. Its hard when every time you walk out your front door, that you are being constantly judged by those who have no idea what your life entails. Its hard not to get upset at the remarks and or stares as you are trying to get on with your daily life. Realize that some are just never going to get it and it doesn't matter how much information is out there, they are just never going to get it. Remember you are on your own path. You are doing things that are in the best interest of your family, not theirs. So what if you have an 8 year old who has oral sensory issues, and it requires them to have a chewy.Or you 10 year old who is having toileting issues. At least your child is happy and healthy and knows that they are loved and supported.
8: Taking care of yourself. This is the most important one. In most cases you are the one that keeps everything together. The glue so to speak. And if you go down, there is a break in your system that works for you. Take care of yourself both from a mental stand point and a physical one. It's hard to clear your mind after a day of full on chaos and ignorance. Sometimes you might need some help making sure you are mentally healthy. There is no shame in that. Taking care of yourself also means trying to find a moment in the chaos that is just for you. Time to unwind, do something just for you. You need those moments, as those are the moments you use to centre yourself. Sometimes it takes a while to find those moments, but in the end when you can finally take a breather after a chaotic day, you will feel better. It's hard sometimes and it doesn't always have to be a long period of time. just long enough for you to realize you are a strong person and you can get through this.
I know there is more, but these are the most important things that I have learned. Again everyone is on their own path and the things learned will be different. In the end. we can all say that we have learn something. Things about ourselves, other people and the world around us. The trick is this, move forward from your experiences. The good, the bad and the ugly. You will be surprised just how much you can grow as a decent human being.