Connecting with other families that have gone before you may help you on your journey.
Jenn and Caden’s Story
A spur of the moment surprise turns into an unexpected realization for me. One that breaks my heart and as usual keeps me asking that question, “Why”? We’re all aware that adolescence is hard. Even for the most popular of kids there will be hard times. I know, I look back and feel I was fairly popular in a very small school. This isn’t saying much if you knew where I grew up. However, popularity probably is even more prominent in the smallest of schools. Yet, I had struggles. Struggles that obviously were not even remotely serious as some but at the time, felt like the end of the world to me. High School was definitely some of my hardest years. I always fit into a lot of different groups, but never one in particular. This is funny because that has followed me through to my adult life as well. In any event, this blog is not necessarily about me. This is about Caden.
My son, who is brilliant and beautiful in so many ways.
My son with autism…..
It’s becoming apparent to Caden as he is growing up that he is different. This has come with a long line of questions from him. Some I can answer and some I cannot. We made the decision this year to tell him he had autism. Funny, it never crossed my mind to do this prior to this year. I am so used to him and I’m surrounded by family and a few close friends who accept us in such a loving and normal fashion that it never occurred to me that this time would come. This is my life. To me, when I’m not pondering it to its full extent, it just is what it is. So the questions came and I did my best to talk to Caden, to answer in a way he would understand, to ease his little mind. This is my life.
Does a child with autism have the thinking capabilities to even understand that they are different? The answer is yes and no. To an extent yes they do because they wouldn’t be asking those questions otherwise. On the other hand, you have to know the mind of such a person to really delve into this. As they mature, they can process this way better than when they are a child, however, it will never be processed completely because they cannot change who they are or how they are and their thinking is limited in ways that you wouldn’t even understand. They can see it or think it or even try to change it but that will just send them into a frenzy because they have a developmental disability that can’t and won’t change. Without support, love, family, and even friends, someone like Caden could very well become depressed, turn to drugs and who knows what else as they get older just to cope. As a mom, this is scary.
Scared. Yes, that’s me.
I spend a lot of time thinking about this. At times, this consumes me and my life. I lose sleep, I lose weight, I cry, I reach out for help, I chain smoke, I get angry. But mostly, I’m just worried and scared.
Scared. There’s that word again.
So, you might be wondering what the spur of the moment idea was that prompted me to pour myself out on paper. Caden is having problems in school. Usually at lunch and recess time is the worst for him. I have made a commitment to myself that I will have lunch with him once a week. I want him to have something to look forward to, something to get excited over and something to possibly keep his mind off of whatever is happening at recess or whenever he finds himself in a situation he can’t handle.
I drove 40 minutes from work today just to surprise him with McDonalds. Only to be greeted by a very upset little man. After fifteen or so minutes of prompting, he was able to finally tell me he had problems at recess and he has no friends. As I fight to hold back my tears and wipe all his away, I am thinking to myself “I definitely thought this was going to go differently”. Now I’m overwhelmingly disappointed. I’m sad.
Scared and sad.
This reiterated to me the struggles he has every day. He doesn’t talk to me every day about it. Usually he seems happy when I pick him up but later he may tell me of something that happened or he will just comment he has no friends. Nobody wants to play with my son. It’s hard and gets harder every day. Scared. Sad. Disappointed.
I feel that I need to “fix” this. Obviously I cannot 100% fix this problem and I feel there is nowhere to turn. There are people who could help, there are people who could have helped during football when Caden was severely discriminated against. Yet, they turned their backs on him and my family. I spoke at the Pop Warner Board Meeting, only to fall on deaf ears. I never even heard anything back from them. Nobody cared. It’s funny, because if it were any one of their children, I do believe they would care quite a bit. However, the discrimination I witnessed over the football season is just one speck in the grand scheme of things. It’s only the beginning of a lifetime of disappointment and disgust in people who won’t understand, who won’t say something on mine or my son’s behalf, blah blah blah. We all know where this could lead so I will get back to my original point. I am fully aware that this is a long road to travel. Scared.
Those who have children with normal lives, normal activities, normal social skills and friends (!) would never understand this. I know, because obviously I have another son who I cherish deeply who doesn’t have the problems Caden has. I’ve come to realize that I may have, at times, downplayed the struggles Brett has had. I didn’t do it on purpose. I just felt, he’s a smart kid with a lot of friends. He will pull through. I am sure Brett has just as hard of a time dealing with being a sibling in a family with a child with a developmental disability as Caden himself does. I’m sure he has questions, feels left out, feels ignored, possibly embarrassed, and who knows what else. This too, weighs heavily on me. It’s a balancing act to be sure that I’m not downplaying Brett, that I’m sensitive to his needs and what he might be feeling. He obviously is directly affected by autism, just as Caden and our entire family are. So much.
With this said, even though there is so much more that I could say, my realization is that I have to help Caden get through this. An even bigger realization is that maybe this is about me in a sense. In trying to balance all of this (This being the sadness, disappointment, anger, sometimes rage, heartbreak, emotional turmoil, and loss that comes with being a parent of a child with autism) So as I was saying, in trying to balance all of this I realized that sometimes this is too much. Even for me. Those who know me know I’m strong. I’m loud. I seem to always have it together. I get my point across. I say exactly how I feel when I feel it. I’m emotional. What may not be understood is it’s a coping mechanism. I can’t change how people treat me or my family or my children but you bet your ass they are going to hear about it nonetheless. Keeping it bottled up for years got me to a point of almost no return in the past and I am healthier now being me.
It’s not easy when you have no answers. It’s not easy watching your child struggle. Especially when it’s not their fault and beyond their control. It’s not easy when in one year’s time both of your children were treated poorly and you became the misunderstood one. It’s not easy feeling that I downplay one son and over protect the other at times. Easy. There it is. I don’t expect this to be easy. Why? Because this is life. Even without autism, life is hard. With it, it’s just a little bit harder and a lot more emotional and somewhat confusing. Confused.
So there you have it. If you have managed to read through this, you will notice the adjectives I have used thus far. They are scared, turmoil, struggle, confused, rage, anger, heartbreak, loss, sadness, embarrassed, scared. Do you notice scared was in there twice? Why you ask? Once for me and once for Caden. All those things I just listed out are not just how I may be feeling but more importantly how Caden feels on a daily basis. We as normal functioning people will have great days, with no challenges or struggles. Caden, and all people with autism wake up to a challenge every single day and those challenges just keep getting harder as they try to cope in the world. Challenges are hard enough for us as adults. Think how this would be for you. Or better yet, your child?
In closing, I feel it’s important to say that despite all of this, I wouldn’t change Caden for the world. I wish at times I could go back and handle situations differently. I wish that I could understand how Brett may be feeling. Mostly I wish that I could keep Caden just how he is but take away his daily challenges and struggles. Mostly, I just wish that Caden had friends. I would give up everything I have if I knew I could make that happen for him. I have seen Brett and Caden go through experiences recently that just suck (for lack of a better word). With both I feel that in a sense, this is good. It builds character, it shows them this is life, it shows them you can’t count on anyone but your family. They, hopefully both of them, will see that in time as they mature.
If you’re reading this and you have a child with autism, any words to help me through this stage, or even a child that you think might enjoy playing with Caden at times, please comment. As alone as I feel at times, I do know I am not in this alone. I do know that if I reach out, at some point somebody will help ease some of the pain for Caden. Even if it’s just for a day.
To my friends Barb, Carmel, Heather, Jackie P., Alesha and Brandi~ you all have opened your hearts to Caden and invited him over to your house to play with your kids many times. You have no idea what that did for him and his self-esteem. Thank you for your support and love you have for my son.
~Jenn – Proud Mother of two wonderful boys~