Monday, February 6, 2012

Freaking anxiety...


Today was one of the days I dread, actually I HATE.  One of the days that make me wish I could grab autism by the neck and choke the life out of it.  Today I picked up Rye and I could tell that he wasn’t himself.  He was in the place he goes when he wants to escape but not to a fun, happy world full of Star Wars and Lightning McQueen scripted conversation.  He was in the place that is dark and dreary.  He was in the place where he goes when he can’t tell me what is really wrong and I’m not really sure that he knows other than he doesn’t like to be there either.   I can tell that he is trying to keep it together and knowing Rye as well as I do I also know it is best to not say anything at this point.  

I sign him out, gather his things, hurry Wyatt along and tell Rye that it is time to leave.  He walks all the way to the car with his head down and just before we get there I ask, “What’s wrong Bubble?”  He loses it.  Full blown crying “I want to go home, my real home, and I am never coming back to school again.”  He starts having the scripted fit he has every time he gets really upset.  “I told you a zillion times MOM I want to go home.”  When he has this tantrum he isn’t talking about where we live now he is talking about Colorado and the home we moved from when he was 3-years-old.  We moved over 5 years ago.   I don’t think he really remembers living there, maybe he does, but what he does know is that if he goes there he can escape what he is feeling here.  Escape his present life; escape the uncertainty and uncomfortable feelings he is having.  I think in his mind “going home” would mean a complete escape to a reality that doesn’t exist, a reality where he could cope with his feelings and feel in control all the time.  

I try to ask what happened and he just can’t tell me.  I am able to get out of him that another child was crying, he tried to “make him feel” and then the kid said he wasn’t Rye’s friend.  I probably won’t ever know exactly what happened and after just a few questions Rye is crying and saying “forget about it mom.”  He then says he is going “to quit himself.”  I have to tell you these are the moments that kill me; these are the moments that make me feel so bad for him, these are the moments I would do anything to make social interactions easier for him.  It is in these moments that I understand that it is not anger that is driving these feelings, it is anxiety.  There is something that you absolutely have to understand when it comes to your child on the spectrum.  Ninety percent of the time it is not anger it is ANXIETY.  When you are first starting out it is easy to think it is anger, he is mad, he doesn’t like what is happening so he is frustrated and “throwing a fit because he is mad”.  I didn’t understand this at first but as time goes by I understand it better all the time.  Anxiety turns inside out into behavior that looks like anger.  I believe the initial feeling is anxiety that triggers anger because of a complete inability to cope with a social situation or overwhelming environment.   When you feel like you are about to lose it because your child is having a tantrum take a step back and try to look at the fact that they probably aren’t mad they are stressed.   

Rye yelled at me all the way home today.  It definitely wasn’t what I wanted to hear all the way home, it raised my stress level and it definitely triggered some angry feelings on my part.  Today I pulled into the garage, got out, opened the door to the back of the van, and I gave my boy a long hug.  “I love you Bubble, I’m sorry you had a bad day, Mommy wishes she could make it better.”  Rye put his head on my shoulder for about a minute.  I just hugged him and rubbed his back.  I don’t always handle situations like this as well as I did today, it is so easy to become frustrated with your child when they are upset.  

I will keep trying.  I will try my best not to respond in anger.  I will remember that it is anxiety and a complete inability to cope.  I will however hate days like today.  I will hate autism. 

9 comments:

  1. Wow Tara, I had no idea what you deal with on a daily basis. You are doing an amazing job with your boys. I knew you did this blog but never had taken the time to read it, but all i can say is wow. I have daily struggles with my children but i had not idea what a family with an autistic child goes through. My mom told me one day that children with "special needs" (sorry I dont know that correct term to use) are given to families that will be able to help them be the best person they can be. I know you and Scott are doing that for Rye. You are wonderful to take this challenge you have and make into something that others will possibly benefit from. Stay strong. Becky Clow Sparrow

    ReplyDelete
    Replies
    1. Thanks do much Becky we really appreciate the support!

      Delete
  2. Thanks do much Becky we really appreciate the support!!

    ReplyDelete
  3. Tara,
    This is the first time I read The Autism Pirate and my heart goes out to you & your family. I have had children with autism in my classroom over the years. Some were minor and at least one other was severe. That child is now twenty and very difficult for the family to handle. I pray that they find a cure for autism someday soon. You are both wonderful parents for Rye. God bless you both for all you are doing for these children. Nancy Amelunke

    ReplyDelete
    Replies
    1. Thanks Nancy! Rye has lots of good days too! Yesterday wasn't great but we are proud of him everyday! We are enjoying blogging and think if others can learn from what works for us and doesn't work for us then that is a pretty great pay it forward!

      Delete
  4. I'm only to your second paragraph and I'm so stunned by what I just read that I have to comment. We moved just a few months back. My son Asa is three, on the spectrum and will be four in just a few more months. It makes me ache inside when he says, "I want to go home." and yes he says this often when he's under stress. I have to get back to him now but I'm going to read more on your blog later. A friend on facebook just pointed me your way and I'm grateful you are willing to take the time to share with others. It definately makes it easier when you know you aren't the only one out there.

    ReplyDelete
    Replies
    1. Finally got some time to finish this post on your blog and you are dead on. I see it in my son all the time. The person above who wrote that kiddos like ours are given to parents who can rise to the occassion was right too. I need to keep that in mind as I go through this journey with my son. Some days I feel like I'm failing misserably but yep its the moments when I see the fear through the anger that make me the perfect person to be his mom.

      Delete
    2. You are not alone. Thanks for reading. We find it do helpful to know that others understand because they are going through it too.

      Delete
  5. Tara, you are an AMAZING mom! Your ability to read Rye and understand him is such a wonderful gift you have. You handle situations so lovingly. Rye is one lucky dude!

    Nancy A

    ReplyDelete