Wednesday, October 28, 2015

8 things I have learned from being a Special Needs Parent.

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.

Wednesday, October 14, 2015

Fake Awareness Month, What colour should I wear today?

Every month it seems there is a cause to be spotlighted for  the social media to take charge and run with. Gimmicks that are supposed to raise awareness for a certain disease or disorder. Things that are eye catching or heart wrenching. Everything from selfies and hashtags to idiotic days like "No Bra Day" When you think about it, is having a disease or a disorder gimmicky? Or the new latest thing?

The answer is no.

The answer is always going to be no. I,once upon a time bought into the whole raise awareness with copious amounts of ribbons and puzzle pieces in a month thing, back when my first
ASD child was diagnosed. But as the years went by, no one seem to care about the struggle I had with getting services, good schooling and medical attention for my child. It didn't matter how many ribbons I wore, people were still and always going to be ignorant to the fact that my child was different. In time I put my puzzle piece decorations and jewelry away and become more of voice for my children, instead of someone that support something only when it is the latest and new thing to get serious about for longer than a hot minute.

I think that is why I have an issue when certain months come around or when it is decided to something gimmicky for a cause. I understand that most organizations are trying to make it fun to raise awareness for their cause, but in reality, living with a disease or a disorder isn't fun. It isn't fun because there is this societal stigma that normally follows you around. October is the prime example of false awareness. You have so many things that October is the cause month for. Breast Cancer, Domestic Abuse, Mental Health just to name a few. Now you could wear the colours of the rainbow in support or participate in something ridiculous like selfie campaigns or not wearing your bra  for a day, but who is that helping? Certainly not the millions of women dying of breast cancer who can't get low cost mammograms because places that provide that have been shut down, or helping the homeless vet who is struggling with PTSD and a host of other mental illness because all those programs to help them be mentally fit have been scrapped thanks to budget cuts.Or how about that child that most will look at through the veil of judgement?  Maybe its the cynic in me, but I don't think any amount false awareness is going to help.

If you want to support something, then support it. Don't slap a puzzle piece in your window or wear a pink tee shirt or take a pic with a hashtag and call it a day. People who depend on the actual support don't need a gimmick. Some need the funding to find a cure. Some need the support of a community and some just need to know that they are not alone when they call for help. So if you want to support Breast Cancer awareness, help out at Women's Health Clinic. If you want to help out Mental illness,be a friend to someone you know is going through a rough patch or even better, support something that helps the homeless, as a good percentage of them are mentally ill. Domestic Abuse, donate to a shelter. Autism Acceptance, Get to know a family who has special needs loved ones. There are so many other, more constructive things you could be doing to help a cause, than to participate in idiotic gimmicks.

In the end, the people who live with a disease or disorder or the ones who are fighting a damn good battle need to know that they are worth more that you simply taking a pic or taking your bra off. Be proactive in your support, that is what is appreciated more than anything else.  

Sunday, October 11, 2015

The 2 am wake up call...

Its not a big secret that caregivers who have loved ones with special needs don't always get the best night's sleep and most of the time we are the ones who look like extras from the Walking Dead. We try to ramble through our day with our head still in the game, thanks in part to large quantities of caffeine. Its no wonder that most of us are either on some sort of anti depressant and or sleep aid just to get those precious moments of a snoozefest.

For me, I have a child, that thanks to a seizure disorder related to everything else that is going on with him, doesn't sleep a full night. The medication that we are currently trying out, I think amps him up to this level of hyperactivity that rivals the Energizer Bunny in the very early morning hours. As we are still in the infancy of this disorder and the medications that work and ones that don't, the lack of sleep is just one more thing to be added. Before we started on this new journey, his sleep was still very erratic, thanks to those seizures he was having in his sleep,but now we have reached a whole new level of middle of the night hyperactivity.

Maybe because I am so tired and the thought of me trying to drag myself to work barely conscious, my 2 am wake up call made me a little melancholy. I sat at the edge of my son's bed, watching flap away and vibrate, it made me realize just how much this little person has going on in his life and here I am worried about me and my lack of sleep. Don't get me wrong, my well being is just as important, but as an adult, I can handle and navigate what is going to be thrown at me, while he can't.

He can't for so many reasons other than being a child. Most children are able to communicate what is bothering them, what makes them happy or sad, angry or upset, but a non verbal child, who's senses are on overload cannot. In my tired haze, I become more aware of just want all of this means for this child, at this current moment in time. He is a child that can't relax. He can't tell his brain to start preparing his body for shut down mode, as his mind is preoccupied with other things, like his sensory issues. In a way its like a radio or TV that is stuck on the same channel and sometimes there is a break in the signal(seizures) and we go back to our regularly scheduled program of verbal and physical stimming.

Sadly a 2 am wake up call is a wake call for so many things. Just as I am physically exhausted. my mind as well is thinking about things. Important things. Revelations about how my child's life actually is and the sad part is, is there are very people out there, who will ever have the pleasure of what these 2 am wake up calls are actually like. Just as I am thinking about him, I am also thinking about everything I have to do as a parent to make sure this child gets the proper services he needs in order to help him deal with all of these aspects of his life. That worry that maybe I will not succeed in my job as  parent to get all of those things.

I type this as I am finishing up my 5th cup of Coffee, trying desperately to get my thoughts down. as I know I am not the only parent that has sat in this chair and drank that much coffee having the same feelings I am expressing. I know this will not be the only 2 am wake up call I am going to have, there will be others. And those will too will come in a haze of exhaustion and copious amounts of coffee. Its called being a parent. Being a parent of a special needs child.

For now, I must go and make my 6th cup of coffee, drown my eyeballs in it, take all that I have  discussed and try to get to work.