Routine, routine, routine!

 Hi all,

Today I wanted to post a bit about routines.  Autism brings schedules and routines to the mix.  All things every family is probably familiar with.  But those things are very important for someone with Autism.  These routines help with more successful engagement in daily activities and can often prevent behaviors.  I believe, for my child, those routines provide a sense of familiarity and stability....he can't tell me this but in my mind, I would think it helps to provide an environment that is safe and calm, or reassuring.

                                       BUT...what happens when a vacation comes along? 

I honestly forget about this every time....E-V-E-R-Y TIME!!!!  I am not sure why because I know, but the truth is that I always remember after the fact!  Ugh!

The setting: It's Spring Break and family is in town....

The weekend seemed absolutely normal but then came Monday.  People still in the house and no school meant things were different.  Although things seemed okay, you could tell my son didn't quite know what to do with himself.  He seemed to drift from one thing to the next....Then came Tuesday, same scenario only my son was easily agitated.  He seemed to get more and more agitated everyday (one moment he was happy and playing games, the next minute he was throwing the game pieces and cursing)!  I felt like I was putting out little fires until he finally blew up!  The blow up was bad...I felt kind of embarrassed that my visiting family was witnessing this but then, I also kinda believe it was good too!  I think it gives family a chance to see our world, the fun and the hard!  And when we talk to each other and say that our son had a tough day, there might be more of an understanding.

On the Wednesday of spring break, I seemed to finally remember what breaks are really like.  Thanksgiving week, the first week of Christmas break, the week of spring break, the first week of summer break, and even the first week of school....all those weeks are huge weeks of change.  I need to remember to prepare him...but how?  My first thought it to write a social story about breaks to read to him (several hundred times) before the break gets here.  Social stories are great because they are words and pictures designed to help kids understand how to act in certain situations.  Hearing it over and over helps provide a chain of actions that they can respond to a situation with.

In the end, breaks are not easy in our household.  They just aren't but I am going to try to be proactive here, to write a social story that explains what will happen during a break from our regular schedule.  In fact, my goal will be to write one after I publish this blog.  My computer is up and going, might as well!

TTFN

Martha

Behavior and Fear

 Hello again,

You must be thinking...another post within a week after so much time without one at all????  Well, I want to write every week during Autism Awareness Month and then get back to writing at least once a month.

This post is related to one thing I mentioned in my last post - behaviors!  Writing about this is really hard -  really, really hard!  Just trying to think about how I want to write on this subject is grueling.  It's not always something I share about openly because I guess sometimes it's unbelievable, I don't want to bother anyone, and I also have this feeling of others not really understanding.  

My son has grown since I started writing this blog....a lot!  He's bigger, he is stronger, and his vocabulary can be quite spicy!  At the same time, he is gentle, loving, humorous, playful, cuddly! He's just my sweet love bug!  So when a behavior occurs, it is kind of traumatizing I guess....and that's where the fear part comes in.

So, behaviors are often triggered (something that sets off the behavior) by something.  It can be something as simple as a noise, hunger, losing a game, another peer, over heating...I mean it really can be anything.  Sometimes you see it coming, sometimes you do not.  For my son, I often don't know what his triggers are because what triggered him one day is not what triggered him the next.  Identifying triggers are really an important part in the autism realm because identifying them helps you cut them off at the pass.  Being able to do so can help you use different strategies to calm your child.  When triggers are unknown, well, that's when you go into trauma mode, holy crap mode!

Here is what a behavior may look like for my son:

Growling, spicy words (like how does he even know the words he says???) and gestures, screaming!  That leads to increasing behaviors that include death threats, spitting, hitting, throwing objects.  In the going away part comes a lot of sobbing and apologizing and questioning.  Ya know, I never really made this connection before but it's like a tornado.  It comes down from the clouds, then it touches the ground causing destruction, then goes away.  That's kinda like the behaviors....only they last longer (sometimes hours).

Why is it traumatizing?  Well, it's not easy listening to your son call you a b*tch or hearing him say he is going to kill you or himself.  It's not easy getting hit or bitten.  Luckily he has very low muscle tone so the hits don't hurt but the biting does.  It's not easy having to restrain your child so he won't hurt himself or anyone else.  That's traumatizing for a person and you might ask why can't we control that??? Well...what I have learned over the years is that once a trigger has happened, the synapses or snaps in the brain go wild.  My son's ability to control himself has gone away because his reasoning is all over the place....when we are trying to deescalate a situation my husband and I use very few words and soft voices because there is NO reasoning when the brain is spiraled like that!  Then, the other part of the trauma is when my son calms down because he sobs uncontrollably and asks why he acts that way.  He apologizes over and over and asks why he is such a monster.  I think that often hurts me the most because I can't explain it to him.  Instead, we talk about the things he can do to help himself....like breathing techniques or getting wrapped like a burrito or getting tight squeezes from dad (dad can do it tighter than mom apparently).

And the fear???  In my last blog, I mentioned how my husband and I do nothing and that it takes a toll on our relationship.  Well, you never know when a behavior will occur...I would feel awful if a family member or dear friend had to go through that.  So, out of that fear we forego time together and time to ourselves or outings.  That fear has taken a toll which is unfair to us all.  I am working on this...I have slowly finally let people in....and it's been fine.  I have also started taking my son places with me...it's not always easy because he is all over the place but he needs these experiences.  And I need to do things! For my mental health..I need to do things!  

So dear readers, you might ask why I say Autism is a gift.  Well, it's part of what makes my family what it is.  Autism is hard but there are so many wonderful aspects to who my son is and to what he brings to our family.  I love seeing his interactions with his sister, I love watching him hug dad goodbye when dad goes to work, I love when my son refers to me as "my pretty".  All those things are things that keep me going...there is positive and negative to everything.  I won't lie, sometimes the hard consumes me but that's when I take my breaths and focus on the positive things I do see and the positive things that I like to do.   I choose that! 

Until next time...TTFN

Martha

10 Years With Autism

 Hi all,

It's World Autism Day 2022.  Seems fitting for a blog and really to update it.  I gave up on writing, not sure why.  I guess partially because I was having a really hard time expressing myself....then Covid hit and my energy towards anything went down as that was a lot for everybody.

So here I am realizing that my life has been blessed with Autism for 10 years now.  It truly is a gift....sometimes the gift is hard.  But I am still lucky because my kid is amazingly gifted with a sense of humor and loving heart!

I think back to some of the things I went through in order to get services...one of those things was a class I had to take.  I remember the speaker asking me what I wanted and my response was simple, "Please let my son hold my hand."  At that time, he wouldn't and it hurt, even though I knew it wasn't his fault.  Today...we hold hands all the time!  It's pure joy but getting to this point was long...

I think everything with Autism is long...and that's hard.  We expect so much to be immediate without realizing that for some, it's a routine that has to happen over and over.  It might take months, maybe years...sometimes there are uphill battles.  Not just with the struggles of Autism but with what we expect as a family.  Do I get along with my husband all the time?  No!  Does he get along with me all the time?  No!  Does our relationship suffer with Autism? YES!  Absolutely yes!  Autism has taken a toll on life, on who I am and who my husband is!  It has changed who we are and how we have to live.

But maybe that's a mistake!  I do not ever want to bother anyone with my Autism issues nor do I think people understand really.  That doesn't mean others don't want to understand.  It doesn't mean they don't want to help.  For the first time in years, my husband and I went out for dinner.  WOW!  For the first time in years we went out on our anniversary.  Double WOW!

Those two days made me realize how important it is for us to give ourselves time.  That time helped me recharge....helped me be a better me.  Helped my mental health!  I was better for both of my kids which made our evenings after school easier as well.  I know as adults we cannot do this regularly but it sure makes me think.  If I am not good for me...then I am no good for anybody else.  I have spent too much time saying no to things out of fear of not wanting anyone else to deal with a behavior.  But I have never thought about how unfair that really is for me and my husband.

It's time for me to open up and let go...fear should not hold me back.  It should not dictate how we live.  And to be honest, the fear of a behavior, an Autism behavior (which I will write about more in a later post), has really ruled my life for far too long.  So in writing this blog and opening myself up to writing more, I make a promise to anyone out there who listens that I am going to try to do better by me!  It's an anniversary gift I can gift myself!

TTFN

Martha