Tuesday, October 14, 2014

Giving Up The Pursuit of Normalcy = The Pursuit of Happiness

Disclaimer: This is an older piece of mine that I have revised. I acknowledge I am not a perfect parent. I have learned so much in my nearly 17 years of parenting because I've made many many mistakes. Many of the ways I used to be when my children were younger don't align with how I am now. I never once thought I was doing harm, demanding compliance, or trying to push "norms" on them.

As you read this please keep in mind it was many many years before the doctors properly diagnosed my son, even thought we'd been seeing doctors about it since he was about 3.5 yrs old.

I see the pursuit of normalcy become “the thing” for many parents of autistic kids. They put so much effort into trying to make their kids blend in with society. They are afraid their kids will never be accepted or successful if they are not perceived as normal. 

I am huge on acceptance, but it has been a journey for me. 

I did not go though the grieving process many parents of autistic children speak about, but I did go through not understanding or respecting my child’s limitations. It’s been an ever changing process for us. As he grows, I grow as well.

Like him, I am Autistic, but he has many struggles I have never faced. Realizing that was hard, especially when my child was a walking, talking,and seemingly very capable little human. It was not hard for me emotionally, it was literally hard to fathom that he truly couldn't do certain things.

I grew up in a household where “try harder” and “don’t be lazy” were taught. If you were not reaching a goal you simply were not trying hard enough. So, I thought this was how I was supposed to raise my children as well. I thought every human being was supposed to be capable of the same things at the same time, and if they did not reach those goals, they were not trying hard enough. This translated into me thinking negatively about my own shortcomings and struggles as well.

My son was never delayed in areas of normal developmental milestones; in fact he met most of them very early. This led me to the assumption he was exceptional in ALL areas.  By the time he was 4, I could see he was behind in certain areas, specifically motor skills, although I didn't know that at the time. In my mind he was not paying attention and not trying hard enough. I thought that if he was delayed the doctors would have seen it. I thought if he was delayed I would be able to tell. I wasn't educated on what motor skills problems looked like.

When he couldn’t ride a tricycle by the time his 2 year old brother had started to try, I stressed out. In my mind he was being lazy and not paying attention. He just needed to try harder. I made learning to ride a tricycle of the utmost importance .I took every bit of fun out of it for him. One day I just gave up, not because I accepted it, but because I was tired.

 A few months later we were outside and I heard “LOOK AT ME MOMMA”, and he was riding it, with a HUGE smile on his face. I think I cried.  He was nearly 5 years old. The same day his younger brother learned to ride as well.

The same was true for writing and reading. I tried to force him into doing them because he was SUPPOSED to be able to do it at a particular age. Yes I said force and by force I mean hand over hand, you have to sit here and do this thing because... yes I did that and am ashamed I did.

He just wasn’t able to, but I could not see it. School was pushing hard for these skills and I had been trying to teach him to help him in school.

Eventually, he did learn to read and write, in his own time and at his own pace.

I later found out, when he was 10 that he had developmental dyspraxia, which is a coordination disorder and it affects fine and gross motor skills. He couldn’t do those things I was demanding. This was also when we finally found out he was autistic. 

Anyhow, those are just a few examples, there were more things that I stressed over, but those are ones that stick out at the moment.

I took a lot of joy out of his early childhood. I missed out on a lot of things. I didn’t just let him be a kid. I focused so much on the things he couldn’t do, I was missing all the wonderful things he could. He didn’t achieve those goals because I forced him; he achieved those goals because he became ready.

After struggling with schools over age appropriate behavior and skills, I saw how illogical that type of thought process was. I also realized how they perceived my child, So, that prompted me to change my thinking. 

He was about 7 before I fully understood that he needed to do things in his own time. There was no need to stress about it; things would happen when they were supposed to. After realizing this, I thought I was finally at peace with it. "Normal" was not our thing, and that was okay. It didn’t mean we stopped working on things, I just didn’t feel the need to try to “Keep up with the Joneses “on these matters anymore.

When my son turned 11, a new thing entered our home, social anxiety. It didn’t manifest in the form of panic attacks and he didn’t verbalize he felt anxious either. But, his behavior told me something was not right. He developed trichotillomania (extreme hair pulling), which I also had as a child. So now my journey into acceptance takes a turn I wasn’t expecting.  I had not had to deal with these things in my child before and everyone always made me push through it. So I tried to push him as well. I thought it was what people do. I thought everyone felt this way and that somehow I was just “weaker” for giving in. I didn’t want my child to be “weak” like me.

My son was up for 6th grade graduation. I wanted so badly to watch him walk on that stage and receive his little diploma. Elementary school was so very hard for him. I wanted him to feel PROUD of his accomplishment. I did it when I was younger and he should too. It’s what is socially expected. It’s what PEOPLE DO. He DID NOT want to do it. 

We went into a power struggle over this for nearly a week before I realized I wasn’t really concerned about him. I was making it all about me. It was not fair of me to ask him to put himself in an uncomfortable position just because I felt I deserved to see this. He doesn’t owe me that.  As his mother I owe him the courtesy of listening to his needs.

In the end I didn’t make him do it, and I don’t feel like I missed out on anything either. I remember the pride and relief I felt when I told him he didn’t have to do it. I even told him I was being selfish when I demanded it from him. I apologized. HA! YES I apologized to my child and told him I was wrong!  Who does that? Well I do.

There were many other incidents similar to this one that we went through. But, this one was when I reached a HUGE breakthrough about what acceptance really was and what letting go of normal really means.

I realized that as a parent I put a lot of pressure on my child. I would demand he do certain things that were impossible for him, just because everyone else was doing it. I also thought he should do it because it was expected of me when I was younger. I had felt uncomfortable like he did, but I was made to push through it no matter how adversely it affected me.

I was also afraid of what others would think of me as a parent if I did not comply with social normalcy. Once I TRULY let go of the pursuit of normalcy, my child started to grow. The pressure was gone, the stressed was relieved. We started to have a real relationship.

Throughout my life:I've loved, I've lived.
I've hurt. I've lost. I've missed.
I've trusted I've made mistakes
I've learned
I realized that he could not possibly be happy with me breathing down his neck to perform. What he needed from me was for me to listen to him and believe him when he told me he was not able to do something. He needed me to advocate that message to others. I was so lucky to be given a child who had the bravery and strength to stand up to me and tell me "NO", as a child I never had that bravery.

Through this realization as a parent, I had a personal revelation as well.I realized I was jumping through a lot of hoops and doing certain things that were unnecessary just because it was expected. Once I let go of that I became a happier and better functioning adult. All those nonsense socially expected things were extras. These were things that didn’t benefit or add to my life. They were merely things I was just supposed to do because others did it too. They were an act that took away energy I needed to focus on just living every day. They took away from my success. I realized that typical people do these things because they enjoy them, and that it was not an act for them like it was for me.

It is hard to explain how tiring it is to live in a world that is too loud, too smelly, too bright, too fast and too confusing all the time. Add in having to remember to act “normal” and it’s a recipe for one tired, exhausted,  melty, nonfunctioning autistic.

I have allowed myself to decrease the amount of demands put upon me every day, I treat myself like I treat my child.. I now allow myself to ask for help and accept it as well. I don’t feel like I am weaker anymore, I feel empowered.  It doesn’t matter to me what other “normal” people do or how they act. I have manners and know how to be nice and my son is still learning!

No good ever came out of someone constantly putting on heirs about who they really are.  I am hoping by accepting myself that it trickles down to how my son views himself as well.

I’m finally happy.

I’ll take the pursuit of happiness over the pursuit of normalcy any day of the week.

Sunday, October 12, 2014

You don't get to speak for me, #IamNOTKelliStapleton!

When a parent of a nondisabled child murders or attempts to murder that child, we vilify that person. No excuse is ever good enough to justify such a heinous act. We talk about the victim in ways that honor their life.

But, when a parent to a disabled child attempts the same act, we are called upon to understand and have compassion for that parent. The victim's memory becomes clouded with claims of violence, being hard to care for,  and any reason under the sun (including things of the same nature I'm about to list) to justify their abuse/murder.

Most of the talks from Kelli Stapleton's supporters focus so much on how hard she had it, how she had no help, how she had no "services" (she did have services).

So, I've decided to do something that is generally not my style, I'm going to tell you how much help and services my family did and did not get. 

Please read and think.

I had my oldest son 2 months before my 19th birthday, just by being a teen mom statistically the odds were stacked against me.  I was young, naive and had not even gotten wet behind my ears in the ways of the world. And yet 16 years later, he is still alive.

We were so poor I was often isolated from the world. No phone, no cable, sometimes no car, certainly no internet (not until 2008, when my oldest was 10) and we were living so far away from any real life support... and yet he is still alive.

I had 2 more children by the time I was 22. I was stressed and stretched... still poor. By the time my youngest was born, my oldest was showing signs that something was different about him. I was written off by doctors often... and he's still alive.

I was sleep deprived for many years... he is still alive.

The doctors gave wrong labels, offer no helped, schools were a nightmare... and yet he is still alive.

In 2005 Hurricane Katrina took my home and stole what seemed like my life. We crammed our family of 5 into a 30 ft FEMA travel trailer for 2 years while we rebuilt our home and lives. That was really hard  to do with 3 children the ages of 3-7-ish (I just don't recommend it!)... my child is still alive.

Even after he was properly diagnosed (autism), help was minimum. I live in the poorest state in the union (Mississippi) and just recently (in the past 3 years) have we started getting autism services in my area, many years after he was diagnosed. Somehow, I've managed to keep from hurting my child. *sarcasm*

I was lucky enough to get a free advocate from Disability Rights Mississippi. Even after that, it took 2 years of literal fighting to get anywhere. Prior to getting help from DRMS, we'd been battling the public education system for 7 years.

At some point (about 3 years ago) my mental health was deteriorating fast. I was breaking. I feel deep into an eating disorder and my marriage was not healthy. My depression was the worst it had ever been, and yes I wanted to die. I even tried to make it happen more than once. But never, not even ONE time did I think about harming my child.

I might ought to throw in here that I had not been diagnosed autistic at this point.

I recognized then and still to this day that those things were not his fault and did not happen because of him. I was not mentally well, physically sick, not sleeping... and yet still I never fathomed hurting my child

I remember days I cried nonstop because I just couldn't understand WHY no one wanted to help him.. WHY did everyone see him as a PROBLEM. WHY WHY WHY? Why were they so bent on trying to break him? 

He hurt, he hated himself, he spoke out against the bad treatment from others the only way he knew how...


And still I never thought about hurting him.

Through all of this I also had no family support and many days I felt like I was parenting alone, but he is still alive.

We finally did stumble across a resource in the form of a day treatment school. But, that part of our journey ended in May of this year.

We are once again traveling with no services and we're flying solo... and he is still alive.

It offends me immensely that one mom blogger with a large following is allowed to say "I am Kelli Stapleton and so are you". Generalizing that all mothers to disabled children are teetering on the edge of murdering them.

All the excuses that she used I've lived through or am living through:

Mental illness
Life circumstances
Lack of services
Lack of support

I can also honestly say I've had a few mental breaks, none of which involved hurting my children!

Was it difficult? Hell yes it was!

Image reads #IamNotKelliStapleton
Why is unconditionally loving my children and
valuing their lives enough
to not murder or hurt them such a radical concept?
Was it exhausting? Absolutely!
Could I have used more help? Damn right I could have!

It's not being sanctimonious when I say with absolute certainty I am above murdering my children.

Why is unconditionally loving my children and valuing their lives enough to not murder or hurt them such a radical concept?

I solemnly swear that if there is ever a day where I think "I am Kelli Stapleton"  I will most definitely find a way for my children to get protection from me and most certainly will not write a blog about it to drum up sympathy.

I promise, if this ever happens, I will take action that does not include trying to kill any of my 3 beautiful children.