Thursday, August 30, 2012

Proud Mama Moments

Those moments in which your kids achieve new skills are some of the most precious of a parent's life. Those first words, the first steps, the first bike rides are all eagerly awaited and celebrated by us. Those moments are even more sweet when we are parenting special needs children.

The other day I was alone with Beans (my profoundly ASD 8 yo) and I needed a shower. He'd been kinda ornery, so I was hesitant to leave him alone for that long. I felt I didn't have much choice, as I really had to shower with the temps being in the triple digits lately. There was no negotiating this. So, I went in the bathroom and left the door cracked open about halfway.

I began turning on the shower and arranging the items I needed for my shower.  I look up and see Beans doing the leaning and peeking thing from the living room, then take off running.  I thought to myself, "I have seen that look before. My other kids have given me that look. What is it?" After thinking for a few seconds I had it. It was the look of a child wanting to be sure you were preoccupied so they could precede to get into something uninterrupted that they are sure is off limits.  This would be something new for Beans.  He usually doesn't show any awareness that I may have knowledge that he doesn't or vice versa.  I decided to go check to see what his plan was.  I found him in the other room digging through my purse looking for stuff to play with and eat.  I took it away, prompting him to have a bit of fit. I went and finished my shower.

When I got out, I noticed he was in his room with the door closed.  Seemed odd, but I figured he was just hanging out.  I didn't think much of it, until he came out and I looked in there to see that he had sneaked the swimming bag in there.  He likes to smell/play in the sunscreen and chew on any change (dangerous!) he can find.  I was dumbstruck.  This is HUGE in developmental gains.  He had the theory of mind to hide his activity from me, and the executive functioning to carry out a multi-step plan.  So, as much as I was not happy that he was being naughty I was thrilled at his new abilities!  He had gone from about functioning at about a 12 month old level to about 18-24 months. I think we are now in terrible 2 territory, as he now has grand plans that he sees me, big, bad Momma interfering with.  There is lots of fits, where he was extremely passive.  That's okay.  I will gladly take the meltdowns over every little thing all day that doesn't go his way rather than a child who really has no will or plans of his own. 

I am proud of every milestone, even the ones that are mixed blessings.

Wednesday, August 22, 2012

Overcoming Negative Thinking Patterns With #Aspergers

Here in the last few years especially I have been trying to get rid of old, outdated thinking patterns and usher in some new ones.  I've not got it figured out, by far, but one thing I am absolutely certain of, changing our most automatic behaviors is hard.  It is really difficult to do.  If it weren't, let's be honest we'd all do what we know in our most rational moments to be the best all the time.  We'd never have an emotional reaction that snuck up on us and took our logic away, causing us to say and do things we regret later.

I have not been anywhere near entirely successful in dealing with some of my most ingrained automatic negative thoughts and behaviors.  I'm sure that my husband would testify to that.  I, however, have been able to start the process.  I have made some tweaks, and had a few successes, even if they were minute, or short lived.

I have a lot of issues with negative beliefs about myself, and subsequently my behavior is negative.  Some of these things were borne out of a childhood where I was not supported, loved or cherished consistently.  Some of them are probably just my personal way of dealing with things, while quite a lot of it I suspect is from my neurology.  There seems to be quite a lot of people with AS that struggle with self-soothing.  I tend to be the most rational, grown up, logical level headed person you ever meet 98% of the time.  I am so predictable and methodical I make everyone crazy with it.  However, there's that 1% of the time where I've had too much routine change, or sensory input, or some other issue with executive functioning and I go into sobbing meltdown.  This is not logical.  It is the opposite.  It's emotional overload.

Then, you have the other 1% of the time where I have jumped off of the deep end into the negative assumption pool.  This is where my terrible self esteem causes real problems other than making me feel bad.  This is when I cannot help but assume that others are out to get me, because they think just as badly of me, as I do myself.  This 1% of the time I feel everything in my environment is a reflection of me.  It's a sort of sad, negative, bleak self centered way of being.  Like it or not, it's probably mild depression.  Depression has a way of turning everything into something personal.  Everything around us when we are feeling depressed is somehow about us, or going to negatively affect us.  Fights with spouses, and friends are easy to come by when you have depression glasses on.  After all, everything they do is a result of how they feel about you, when you feel this way. They might be late, because they don't see you as important, or that friend didn't wave at you, because they don't like you anymore, or your boss didn't tell you you did a good job with whatever task, because they think you're a failure.  The possibilities to link yourself to your environment are endless when in this frame of mind.

For me, I can get to where I need a release. I need to get it out, and be reassured that I am okay and things will be okay. I turn into a child that needs consoling.  My husband made a good point last night when I mentioned this to him.  He said it was because a child only sees the immediate problem, whether that is not getting their way, or getting punished, or feeling lonely. In their mind they have no capacity to see that the situation is temporary, or to have the power or ability to problem solve. They can't see a future, they only see now and if the present is awful they feel it always will be.  I think due to my AS and my parents not giving my the reassurance and care I needed I never really developed a very good coping strategy to dealing with the situations where I feel knocked down and emotionally overwhelmed. I lash out and look for ways on the outside to alleviate it.  I look for short term solutions. I problem solve with my feelings the way an 8 year old would. Thankfully, I don't get knocked into this space easily.  I do however, need to find better ways of dealing with my emotions and my extreme self loathing when I do get into this space.  After, researching and doing quite a bit of thinking I have come up with a little cognitive behavior exercise that I am hoping will help.  I've tried it a couple of times and it seems to be helping so far.  I will share it, in case it may be of help to anyone else.

So, here goes... the CBT-type exercise I came up with for myself.  Of course, I am not a doctor, and have not professional training in CBT.  I am just offering up my experience.

Thought: This is where you list the thoughts/feelings that is causing you discomfort.  Example: I can't go to the party, because I am fat, or I can't do the project. I know I will fail and people will laugh. This should be only a few short sentences, if that.

Consequences Of Thought/feelings: This is where you would list how this thought makes you feel and what consequences of it will be. For example: we may avoid people and miss opportunities due to irrational beliefs, or the thought may cause so much stress that we will feel depressed and waste a day moping.

Past Occurrences That Are Similar: Here you would want to think of a time in your past (childhood if applicable) where this thought or feeling occurred. Then, list a recent time where this thought, or feeling occurred.  This helps you to see why the behavior might be there.  It probably served a purpose way back when, but if you look at a recent occurrence of the same behaviors you might see how it's no longer working.  This is important for me, because it helps me to see the logic behind my emotions, as well as pulls me back in. I can look at the recent occurrence and see how I handled it then, and realize I'll get the same result if I keep on with the same thoughts and behaviors.

What evidence do I have that my thoughts or feelings are true?  That one is pretty self explanatory.

Is it Helpful to carry this pattern of thinking into the present? Here again, pretty straighforward question that you can probably figure out from the last 2 questions quite easily.

Why or Why not?  If no, then come up with an alternative belief, or action to do instead of the old pattern of behavior.

Monday, August 20, 2012

Info Sheet for New Teacher- Autism Back to School Tips

This is the sheet I give Bubby's main teacher(s) at the beginning of the year. I update info as needed.
Hello. At the beginning of the year I like to put together a little bit of info to help introduce Bubby to anyone new that will be working with him.  I hope you find it helpful, and as always, if you have any questions please contact me via e-mail (preferred) @ or phone XXX-XXX-XXXX.

 Bubby is a very affectionate caring guy. He likes to stop and chat with the adults, as well as collect hugs from all the ladies. :) He cares very much what adults think of him, so be weary of using too harsh of a tone when speaking with or correcting him.  He will take it far more personally and carry it around with him far longer than an average 10 year old little boy.  He enjoys verbal praise and feeling like he's a part of things.  His favorite things are watching funny videos, playing Minecraft, riding his scooter, swimming, playing his DS/video games, and anything to do with animals.  He LOVES animals.  When he's getting too worked up or upset about something asking him to talk about our cat or talking about your animals is a good way to calm him down and distract him.

 Bubby's sensory needs are a little different than an average person.  He gets overwhelmed in loud chaotic situations where there is a lot of noise and movement.  He will usually show this by looking and acting irritable.  He will also look like he's not following directions during these times, but his behavior is not purposeful.  He can't think straight and listen when he's in a sensory overload, and if he's it gets bad enough anxiety will set in to where it gets to where his brain goes into fight or flight mode.  This is either where he will meltdown, or shutdown.

Ways to identify a meltdown:
He will begin repeating a lot of the same things, and may not make much sense.  It will look like he's having a tantrum, but will not be able to calm down.  He will begin to cry and yell. He will begin to start looking 'floppy' where he starts flapping is arms and hands around making a noise like he's about to hyperventilate.  He'll want apologies from everyone around him, even if they didn't do anything.  (it is inappropriate to apologize if it's unwarranted) He needs to get to a quiet space to calm down away from others. He will deny this, but I always give him the choice of calming down, stop crying, or taking a break. He likes deep pressure, swinging and similar things to calm him down.  If possible when he needs a break take him to the OT room.  If he can't immediately calm himself he has to take a break.  He needs to learn that it's not appropriate to have meltdowns in front of his peers.  He should not be punished, or be made to feel ashamed of his anxiety and subsequent meltdown, either.  Last year, they said it made  Bubby’s behavior far worse to remove him from the classroom during meltdowns. You will have to get to know him and how he operates within the classroom this year  to know what to do that will work for him and everyone involved. 

Ways to identify a shutdown:
He will look blank, like he's not paying attention, and he may hum and self stimulate by pacing.  Follow the same protocol as with a meltdown.

Sometimes,  Bubby has a hard time finding his words.  Please, be patient with him and allow him to finish his sentences.  It's very much like a stutter.  The more anxious he gets the worse it gets for him to get the words out correctly. Please, don't finish sentences for him.

 Bubby likes routine and structure.  If the routine will be different it's best to let him know ASAP.  There are a lot of ways to do this. Verbally, or perhaps he can have his own written schedule on his desk.  Please, notify him and have an adult present with him before emergency drills if it becomes a problem.  Last year, he seemed to be okay without the warning, but needed it in all the years before that.   I will make up a little fact sheet with his picture on it for substitutes to look at, so they are aware of his special needs and there isn't any miscommunication. 

Thanks for being part of  Bubby's education team! If you would like more information about autism let me know and I will find some materials for you. I hope everyone has a great year!

This is the info sheet I give for the teacher to put in the Substitute folders in each room as well as for any other teacher, or para that may be working with him.  It is short and to the point. I also have a picture at the top to identify him, because obviously a sub will not know who he is by his name.


Hi, my name is Bubby.  I have mild autism.

Please, be aware that:

*I may get over stimulated if there is too much noise and stuff going on around me.

*I may not make eye contact or look like I am listening. If you are unsure if I am hearing you, please ask me

*I may need some extra assistance with directions and other things.

*I may ask you a lot of questions, because I like getting to know people.

*I may need a little bit of extra help changing routine or handling new situations.

Tuesday, August 14, 2012

An update with Gratitude

I thought that I would write a short, quick update for all of you that were so graciously offered your kind words of support, encouragement and personal feelings of 'me too' because of my last post.  I wanted you all to know that I appreciated you. Every one of you that left a comment here, on my page, or sent me a message. It was a relief to be able to share something so personal, but negative and have a kind response in returned instead of whatever awful thing I guess I thought was going to happen.

Things have been going better for my husband and I. We are working toward dealing with our emotions in a healthier way.  I am working on not being so quick to get angry and he is working on not getting so anxious.  He says he is having heart problems when he thinks I am mad at him, but I don't think he is.  I think he is having panic attacks.  He tend to take everything I do or say personally and then gets worried about disappointing me, which makes him behave in ways that irritate me, so in the end it is a self -fulfilling prophecy. The same the other way around.  In our relationship, gender roles are often reversed. He is often over sensitive and I am often too blunt and to the point. I am the one who complains there is not enough sex. He complains I don't give him enough affection. I tell him I would if it led to sex, otherwise, I hardly see the point.  I can't trust the man to take the kids shoe shopping alone. He will buy himself shoes, as well, even though we have discussed that he has enough shoes.  He never thinks he does, because there was a sale, or the old ones do this, or look like this, or maybe I need an extra pair for that. He can't resist a pair of clearance Nikes in his size.  He is the passive aggressive, I'll tell you what you did to hurt my feelings when I feel like it person in our relationship. I am the tell it like it is on the spot when I think it, one.  I'm working on tempering that to be more considerate to his feelings. Some things I need to keep to myself. Not everything that I think, or that irritates me need to be announced.

There is no handbook for the uniqueness that is the AS to ADHD marriage. I think as we move on in more awareness in individual differences there will be more resources for marriages like mine. It's not really a 'new' thing. There has been these neurological differences since the beginning of time. It's new in our understanding of it. It's new in the way that I want to be happy in a way that makes me feel supported and loved and so does he. I don't want to live in dysfunction, because I have just resigned myself to the fact that this is as good as it gets, so I may as well just do what I want while resentment builds inside of me. On the same token, I don't want divorce, either as a means of escape citing that we were just unable to make it work.  We are able to make it work if we try and if we can't we will know that it is because at least one of us gave up and stopped trying. There is no reason we can't step outside of ourselves and try to see the other person's POV to make life better and more manageable for everyone involved, especially our kids.

So, we move to make things better, using new techniques, and new tools to help us along. Hopefully, this time next year I can report back with some improvements.

Friday, August 10, 2012

Anger and Isolation

I know my blog has been a bit of a downer lately. And, the post I'm about to write is going to be no exception, so I apologize in advance for this. I know that I shouldn't, but I am, because I just feel more comfortable giving an apology, or some sort of warning before proceeding to vent all my issues into your brain, so at least you have been warned and can go read something more positive if you're not in the mood to read about negative life circumstances right now.

In most of my life I have been the one to be carry the blame. The one that was everything was kind of dumped on. I grew up in a situation that no child should have to. Of course, this this is the past and I don't live there anymore. I understand that and fully accept it, but that doesn't mean that emotionally I am able to fully adapt to current circumstances. It doesn't mean that I have the emotional skills to navigate in a life where I am always waiting for the next time I'm going to be scapegoated.  I spent the first 30 or so years of my life trying to make it all work, keeping up as best as I could before I finally said no more to it all. I got angry. This is a relatively new emotion for me. I used to not get angry.  Now, I am hyperviligant about protecting my space and my rights. I am downright bitchy if I feel my rights are being violated.  I went from one extreme to another, which is adversely affecting my marriage.Used to be that my husband was the one with anger issues. He used to rule the house with his temper. He has worked on this behavior and it's markedly better the last 4 yrs.  Now, I am the one with the quick temper.  I am getting counseling and working on being more even tempered. This is going to be a long process. Years of abuse and mistreatment has to be dealt with.  My husband is the only person I have to lean on. I don't have one family member that I can call for help. Not one. My husband's side is also just as busy being dysfunctional in their own ways. As soon as autism entered our lives, one by one each and every one of them left. People with that level of dysfunction and narcissism cannot see outside of themselves long enough to deal with someone like Beans, because he forces them to be real. He forces them to bend their needs to fit his, because he has a great level of need. Not a one can do that, so they don't come over. They don't invite us to gatherings. They just don't.  Relatives will come into town, visit other relatives and not even call or stop by our house. This is my reality. Unfortunately, this is my whole families reality. My kids don't get the grandparent experience. The last time my daughter visited my mother she spent the whole time telling her what a worthless person I was and how she deserved to be treated better for all that she did for me. My daughter didn't agree, so my mother doesn't talk to her, either. No birthday cards, no phone calls, no nothing to any of my kids. When I go to fill out forms for school and such I pretty much have to make up info for emergency contacts. If they can't get ahold of me or my husband in an emergency then they've pretty much exhausted the limit of people available.  It's us and only us. 

So, with all this stress... my husband working 10-14 hours days seven days a week, and me doing the rest with no break, no support from anyone I get moody. I get moody and I take it out on who the only other adult in my life, which is my husband. He said he needed a break and slept away last night.  I don't know when he is coming home, or if things will work out, or even why I am writing this. I'm sure things will get better. I'm sure progress will be made and life will improve if I keep trying. It's just hard sometimes, but I suppose everyone's is.