Addict · Addiction · Autism · Bloggess · Family · Life · Life story · Mother · Recovery

What It’s Like Being Her Mom

I know what it is like to be the mother of an Autistic child- I don’t forget ever, it’s impossible.  We also get the added enjoyment of ADHD, Anxiety and Depression all diagnosed and rolled up into the most brilliant beautiful 16 going on 17-year-old girl named Irene. Sometimes though I just don’t think anything of it, it’s just a day like any other day. Some days are harder, some are easier- they just blend. I can’t even imagine how hard it is for Irene though.

It has been a while since we have had a complete meltdown, they look different today.  I am not sure if it’s the 3 years of Social Skills classes, the 3 different psychotic meds she’s on currently or just the fact that she is getting older and the kids don’t pick on her as much?  Maybe the world is becoming softer to the world of Autism? The stares have lessened, the kids teasing and poking fun because they know if they poke just enough she will start screaming uncontrollably and then the tears start- that is fun for some to watch. Please don’t talk to me about medication on such a young girl either, I struggled with it myself considering I am a recovering addict for so long and probably added undue trauma to my child by not easing her symptoms earlier. She has made great strides with medication, especially since she was diagnosed Depressive. Prior to Social Skills and meds what it looked like for us was borderline Schizophrenia and having done the research I know we are not out of the woods yet on that one.  The silent giggles and laughter to who I do not know. I try not to worry, I have faith, but I live in reality as well.

Things we get to work on, and when I say we I mean Irene and myself- her father and siblings are very much in the picture but it’s just not the same.  It’s Irene and myself mostly together against the world.  Sometimes I forget that – I get wrapped up in life and the things I want to do as an adult. I forget that if I am not there she is pretty much alone, the truth is that when I am there she is pretty much alone too. I have to force her out, planned adventures that must have a lot of quiet time. That sounds so much like myself I cannot even explain.

At times I forget about the crowds and the sounds- I forget about Autism and Anxiety altogether. I fail. She is not like my other children. She is special.

I recently took Irene with me to an out-of-town convention that I had worked on for almost two years.  I wanted her to see the sights. I wanted her to see what her mother had done, what took me away from her and my family on late nights and all day meetings, where I had dragged her to events leading up to and what for. I wanted her to see. I failed to recognize the commotion, sounds and fear that it might cause my child- I forgot. I knew I would be paying a lot of money for banquet meals she would not eat, I was paying for her to sit with me. Irene eats about seven different things and four of those are a potato in a variety of different ways. Before the meal was over she had asked to be excused to the hotel room and at that moment I knew.

I knew she had left her earmuffs at home, she had left her headphones which are actually her security in the hotel room- she had even left her knitting and her phone was dying. These are the things that comfort her. These are the things that allow her to join in with others, but allow her to escape at a moment’s notice. These are the things that sometimes, I say sometimes, stop her from pulling her hair out or mutilating her body by picking at imaginary things that are not there- scarring herself. I cannot stop these things from happening and I know she can’t either. It hurts. It hurts me that my daughter is hurting and I can’t help her. No one can, this is just our life.

You come to grips with it. This is it. These are the things she does. Will it be forever?  Will she grow out of it? Who knows? My job – to try to remind her to stop pulling her hair out in a kind and loving way that does not seem like nagging bringing her to tears. To try not to cringe when I see the gaping whole on her chest that she has gouged out because she knows if it can’t be seen people won’t stare. The truth is they stare as she is doing it. Where? In class, at dinner out, in the grocery store lines and anywhere she gets bored at. I try very hard to let it go as she is doing it because I know it upsets her.  I don’t think she’s aware she’s doing it- they have just become her new mannerisms. Such as when she bounces off the walls at home down the hall or the humming when things are going really good. Those are the things I look for, the things I know that when I see and hear I know everything is alright in her little world.

The struggle. With all of that there is an even harder struggle. The struggle that she looks just like everyone else. That she is smarter than so many her age. No one thinks she is different and they suggest just let her go, go run off and hang out with the other kids. I know better. I want to let her run and go hang out. I did once- I won’t do it again. Within an hour she had shot a gun and been kissed by a boy. A boy she had never met nor seen again. A boy who could have done anything and she wouldn’t have stopped it. Would she have? I don’t know. I knew better and I fail sometimes.

How do I trust the world with Irene? The tears well up as I type these keys. My child. The brilliant young girl who has her whole life ahead of her. As she gets ready for AP exams and SAT’s I secretly wonder to myself does she understand? She has hundreds of emails and letters coming for colleges, I am not sure if she even knows what any of that means. I have to remind her and ask constantly for more information. There is no excitement, there is no “normal” joy. It’s just another day and another college- the latest from Vassar.

I am both excited and afraid. How do I let her go? Do I let her go far or do I keep her close? The truth is I know already. None of it matters because she will either do great or she won’t- just like any other kid. There are no safe guards. I hope I can find a place where she is comfortable, where she will thrive. A place that will understand and be accepting. A place where she and I both feel safe. She will need help and that is my job as her parent to make sure she gets everything she needs! I know that! She can do it!

There was a time- a time when she didn’t talk. She stared blankly into the air, defecated on herself, cried uncontrollably and was inconsolable. A time where they said things like she will never be able to live alone, may be able to hold a part-time job with assistance. Well we are way beyond those times. We have grown and these are new times. I don’t have all the answers. I am trying to catch-up myself sometimes. So when I see other people who are just like us- I smile because I know. It’s impossible to forget.

The Chicken Lady

Vassar

 

Addict · Autism · Bloggess · Farmer · Life · Mother · Recovery

I Am Her Best Friend….

I have not had the time that it takes lately to sit and clack the keys, that’s rather unfortunate too as I have so much swirling in my head.  At this moment though, I am sipping my coffee on a beautiful Sunday morning, the chores are done- which means the chickens have been fed, the dogs are outside and have eaten as well and my sewer cat is out roaming the streets somewhere in front of my home.  Irene my daughter is sliding through the house in her slipper socks on the hardwood floors humming one of her favorite tunes while she intermittently hops in my bed and pulls the covers over- before she starts her routine again for another round.

This little ditty is about her, my daughter Irene, I am her best friend.  I am her only friend as well.  I am the mother of an Autistic child and while she may look like your average girl on the outside- she is not.  More importantly you may think she is just like everyone else- she is not.  What is normal for some is not for others. Irene is different.  She is sixteen and has no friends but me, no real friends. No one.  She is humming in her room right now, it’s the sweetest sound ever.  We are getting ready to go on an outing, one she actually wants to go on, not one I have to drag her on.  It is winter so she will be wearing her earmuffs, which really protect her from the sounds of the outside world.  I cannot tell you how many sets we have gone through.

I try really hard to get her involved in outside activities, to expose her to the outside world I want her to participate in life one day on her own.  I hope she participates one day on her own.  We are in Girl Scouts, Swimming, Knitting Club, Kindness Club, and even a Youth Advisory Council.  Some of those I push her into and some of those my darling daughter has chosen on her own- to my amazement.  It has taken years  of Social Skills classes, for the both of us, for her to come out of her shell.

She’s still there, in that shell mostly though and that’s ok. She’s in her own little world most of the time. My job as her parent, the parent of an Autistic child, is a little harder than the parent of any other child.  Why? She IS different.  She does not know the value of a dollar and will give it away, all of it, if I am not constantly reminding her of how to gauge her money. She does not know of friends, real friends, or those who want to be kind to take something from her.  The world we live in will take it from her.  It will take all of it from her if I let it- It will take her innocence.

I know I can’t protect her from everything, but I can try.  I don’t go out often and when I do it’s calculated for short periods of time.  I do not take her everywhere either, she doesn’t want to go and she doesn’t have to.  She is sixteen now and can stay home alone, but I don’t like to leave her for long. Alone. More importantly I need to keep my eye on her when I take her wherever- why, because I am her mother.  She is not your average sixteen year old girl, even though she looks the part.

Irene has shot a gun, a rifle if you will and she has been kissed; all on one outing, that I trusted the kids around us to let her go with. That I listened to those parents around me say it will be ok, she will be fine, let her go have fun.  It only took one hour if that for all that to happen- her first kiss, from a boy she didn’t know and still doesn’t.  From a boy she doesn’t even recall his name. That is not how I wanted her first kiss to be. That shouldn’t be how anyone’s first kiss is.  I should not have found out six months later in an office where things were being discussed and words like depression and medication were being hurled around. That is how it happened though. I know better.

I was chatting with a mother last week about these very things.  She knows my story because she lives it too.  We get to comfort one another because sometimes people around us don’t understand, especially when she looks just like every other sixteen year old girl. She’s loud sometimes, she panics, she cries and yells; these happen much less than they did before. Now she has moved on to pulling her hair out-I don’t even think she is aware of it. Depression, Anxiety, Autism, ADHD are all wrapped up with the sweetest smile you will ever see humming the most beautiful sounds. I was meant to be her mother for a reason, I was chosen.

I started these words in the morning, but took a break to do some things she loves.  We went to Apple Hill, and to a few of her favorite stores.  She doesn’t even like apples, or the buzz of the place and the people around.  She enjoyed today though as it was quiet and the people of the season had already come and gone; French fries and Honey Stix, that’s it, all she wanted.  Sometimes I will take a drive, yes an hour away for fries and honey just to get her out of her room and the house.  Today we got to enjoy the company of him, who doesn’t mind us too much either.

The Chicken Lady

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Addict · Autism · Bloggess · Farmer · Life · Mother · Recovery

The Watering Can….

It is a Sunday and I am currently staring at a few different situations unfolding in my life while I sip on my coffee watching the  two dogs watch me from the yard, anxious to be released into the back forty where they can run wild and chase the chicken’s.  I make a pretty mean cup of coffee by the way with my little French press, however that is not the topic for the moment.  Actually it could be, I have so much that has been floating around in my head that I have wanted to put down on paper; I just haven’t had the time.  I have started a blog, I am a blogger or is it bloggess?  I do like the sound of bloggess.  For whatever reason, possibly my need and strive for perfection, I have not posted anything much as of yet due to the fact that I want to capture my previous writings and chronicle them in order.  That bit of perfectionism that has been creeping out is proving to cause a hindrance to my creative process since I have been writing for a few years now and only started to save those writings in a designated location last year.  So I have decided just to write,  write, write, and will probably write something later to describe why everything is written out-of-order.  As if someone will take the time to read my silly ramblings.

On to the watering can.  Imagine if you will a young girl obsessed with a watering can; and then just kick that up a notch.  Irene, my youngest child that I have had the privilege of raising is Autistic; what that means is she is just like you and I.  Only better.  Irene over the past few years has been collecting watering cans; it has only been recently that I have noticed.  I can see two in the back yard now as I type, one on my kitchen floor, I know she has at least two in her room and countless others under the sink and in the garage. Often times when we are at the store, whether it be a traditional store or a thrift, she gravitates to the watering cans.  I always note as she walks up to me holding yet another can, how many we have at home.  Sometimes I let her get the can and sometimes I don’t.

Autistic children often have some habits that make them unique, I am not sure if she will take this into adulthood.  A few of her others are she hums.  I have no idea what she hums and I do not even know if she is aware of it?  What I do know is that it is one of the sweetest sounds that I have ever heard and when she is humming; I know everything’s alright in her little world.  Irene glides too, all around the house.  I have hardwood floors and what it looks like is skating in slipper socks or actual slippers.  She has a new pair of slippers that she is already wearing out.  I am very surprised that the floors don’t possess a groove for her path or certain spots on my walls have not lost the glow from the paint where she touches softly to push-off and the walls show no signs of wear and tear.  She bounces like a pinball and that I am positive she has no clue of but that is my best description of that.

Moving forward I will put a shelf up for her cans in the garage and let her start her collection or at least display the collection she already has.  I will not dissuade her any longer at the register when it comes to a new can.  As I mentioned above, it is only recently that I even noticed all the cans throughout the years and how they have grown.  She likes to watch things grow and is constantly planting something somewhere.  Now if I could just get her to remember to water with those cans we might have a forest over here, we do not.

Encouragement is all I do here in my life, with all of my children.  I admit I may encourage this one a bit more.  I remember when she didn’t speak or look at me.  I remember when she screamed and cupped her ears at the sounds of just about any noise.  I remember when I was told she defecated on herself in class all the time and would run out escaping to various parts of the field without anyone even noticing she was gone.  I remember when they told me she would never be able to live alone, that they had centers for housing when she grew up and if we were lucky she might be able to hold a part-time job with assistance.  Irene has made great strides with years of encouragement, social skills classes and love.  She can do anything!

The Chicken Lady

Watering Can