A Love Story

 Hi all

It's the last day of Autism Awareness Month and I really want to share a love story.  You know, this has been a long road.  Autism is not easy.  I thought it would get easier as my son got older but instead, it only has brought new challenges.  And challenges effect life and it's how you handle those challenges on a daily basis that make or break your days.  Trust me, there are many days when those challenges get the best of me...but enough about that!  Let's get to the love story....

I often will say that Autism is a gift.  And it really is because it is part of who my son is.  Seeing his milestones, including the tiniest milestones, warm my heart so much and fill me with a joy that I almost can't explain!

I always think back to when all I wanted was for my son to hold my hand...guess what?  My love story is that he holds my hand all the time.  He hugs me, he cuddles with me, he says I love you and I miss you, he gets excited when I get home from work.  He just lights up when he sees me!  I don't take it for granted because I know how long it took to get to that....I know there was a time that I wasn't sure it would even happen!

Another part of this story is my daughter!  My son and my daughter have a beautiful relationship.  They do as siblings do...bicker!  But they also snuggle and laugh and play games and hold hands!  It's so fun to watch.  That interaction is huge because with Autism, social interactions aren't easy, they can be awkward,  and they are often avoided!

There are just so many things that bring me joy and the two above I shared are just a small taste of it...Those are the things we must hold onto when times are tough.  Because there is a lot of tough on this journey....Autism brings different things on different days.  And autism is different for every child...my experiences aren't necessarily the same as another family's.  I guess that's often why it is said that if you have met one person with autism, then you have met one person with autism.

My hope is to continue to share my story, share my experiences.  If it reaches one person....helps one person to know they aren't alone, well, then I guess I have done what I set out to do!

I will be blogging once a month from here on out!

TTFN

Martha

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

A Bit About Books

 Hi all

I am starting a brand new bog...about books.  I guess because books have saved me this past year.  Like honestly, books have been my go to, my getaway....and I have read so many amazing middle grade novels that I feel compelled to share them.  

Most recently I have read A Place to Hang the Moon by Kate Albus.    She inspired me to write this blog really and it was this one line...about books being like a freshly baked cookie.  So good you have to keep reading....which is so true.  

So I want to blog about books....picture books and middle grade books....I want to share the incredible books I have read.  They have kept me going....I will share a synopsis and my thoughts.  It will NEVER EVER be negative...as negativity gets you nowhere....But I will share about them and leave you to decide...

A Place to Hang the Moon is pure artistry.  It is about three young kiddos who have lost their family and need to find their place...a new home.  They are living during the time of a world war...they are sent with other kids to the country, they hope to find a new family. during wartime  While they figure it out, they find solace in the library....it's totally relatable for me.  Books...books saved the kids....and I get it.  Books have saved me!  Read it...it's definitely a must read....I hated when it was over.

Something's Wrong by Jory John is a hoot.  JoryJohn is one of my ultimate favorite authors so I had to have this book....it's so worth it.  My students died of laughter but probably because I was laughing so much...Who hasn't had an embarrassing moment?  But I love that the message is friends sticking together...friends helping out another...in their time of need.  This is a hilarious book with a great message.

As this is my first blog about books, maybe I haven't shared enough information...I don't want to give anything away, though...but things will only get better!

Please read these books,  They are worth it...

TTYL
Mrs V. 

3rd grade teacher who reads a million things...

Life with Covid and Autism

 Hi all...

I am reposting an update because I left a piece off when I originally posted,  You see, I write a rough draft first then edit,,,,,sometimes important pieces get missed.  My added material is in italics below:

I have really been offline for quite some time but I am disappointed in me because that's not helpful at all.  We are all going through so much....so how is it for a child on the spectrum?  

My son is struggling which means I am struggling.  In the beginning, it was fine.  He was okay with distance learning...5 months later, not so much.  He hates being online...every morning we walk on eggshells wondering if there is going to be a behavior in regards to getting online.  The behaviors are not easy...lots of yelling, screaming, name calling.  It's very hard to hear your child call you terrible things but he doesn't mean it.  It's an escape, an avoidance.  He has pulled out his eyelashes and grinds his teeth regularly.  Going outside is also difficult because it scares him.  His first question is always, "Will I get Covid?".  

Me???  I worry every second of every day.  Dad deals with distance learning for our son until I get home...I leave school at lunch time.   I go to my classroom in the AM just so I can teach without interruption.   Then, I take care of my son's occupational therapy, speech, and group counseling after school.  It's been very difficult and it leaves me wondering if I am doing my best as a mom and as a teacher, who wants the best for her students.

Sometimes, in these times, I think we forget that we are doing the best we can.  We have families or jobs or friends....some of us have kids with special needs.  We are going through a lot, an unknown.  That in itself is hard.   Distance learning...distance teaching...distance anything.... is hard.  I mean hard....

A child on the spectrum needs routine.  My son needs to feel secure in the changing world around him so do I send him back to school?  Do I keep him home?  No matter what I decide, I feel like I am wrong.   Yet, he needs consistency...the routine that makes days somewhat normal....so what do you do?  What do you choose?  It's a struggle.  It often keeps me up at night.  

M ultimate decision is to send him to school 2 days a week.  Give him that sense of normalcy...all while I worry....am I right or am I wrong?   

My thought...do the best you can.  That's it!  That's all anyone can do!

TTFN

Martha

You must choose....and so I do!

Well hello there....

It's been a solid, long while since I last posted and for good reason.  When you aren't feeling it, you just aren't.  And I wasn't.  I probably wasn't this entire year.  Losing my mama last year was so hard and until recently, I think grief factored into every minute of my life way more than I realized.  After mother's day without her, I kind of had an epiphany I guess....if that's what you want to call it.  And someone close to me said.....

"Choose.  Happiness is a choice....so, choose!"

My mom was always a positive person.  She was kind and thoughtful and grateful....she would never want me to carry on feeling so sad.  So I must honor her.  And in honoring her, I am a better me who is better for everyone else.

Also, I want to get back to what this blog is supposed to be all about.  It's about my life with autism.  It's meant to share, inform, help, and really be a sort of journal for me.  So, I am back at it folks....and here goes:

You know, there are so many things in life that are hard.  There are so many things to overcome.  There are also so very many joys, which my daughter does not see right at the moment.  She is about to be 13 so for her...everything is in the moment and autism in her words is "the end of the world".

A quick explanation behind her words:

My daughter spent the night at a friend's house.

JB and I picked her up.

Children with autism need to investigate and observe new places.

So...We walked into the house and JB went room by room.

He needed to see everything.

Even before we got there, I primed him.

Priming is simply explaining expectations for when you are about to do something.

JB repeated back to me everything I expected.

Yet we get there and that priming went right out the window.  

JB did not want to leave.

UGH...

He did not want to leave. 

Thus began an uncomfortable behavior.  JB ran around the house.  Everyone was chasing him.  He screamed, he cried, he called us all potty words.  When I finally did catch him, he hit me and cried.  I know that this is just him without control of his emotions but in the moment, I still get uncomfortable even when people are trying to be understanding.  It's still very stressful and hard.

Well....for my daughter, it is 100 times worse.  When we got home, she had her own tantrum about it.  She went straight to her room and screamed into her pillow.  I felt so bad....but then I remembered that....happiness is a choice.  We will always feel pain, sadness, stress, etc....but when we choose...we make a conscious effort to choose.....well, how long we hold onto those yucky feelings changes.  

I reminded my daughter that autism will probably be very stressful for the rest of our lives but we can manage how we let it consume us.  I reminded her that he missed her so very much while she was away and I also reminded her of his joy when he first saw her when we picked her up.  Those moments are the ones we need to capture and be present in.  

So how do we handle the stress?  For me....I spent the past year eating my feelings.  Now I am paying for that but I have made yet another choice...happiness is taking care of myself.  I am riding my bike or walking 2 miles a day.  I have started reading again and I am writing meaningful quotes down in a journal....I look at those daily, kind of like affirmations.  I am listening to music more and I have started to even pay attention to my eating habits.  But what does my daughter have?

So....I reminded her of all the little things that bring joy...I reminded her that doing art, reading, looking at pictures, listening to music are things she loves.  When we feel stressed, we should focus on those things that help give us positive vibes.  It's amazing how quickly an attitude can change when you try to fix it and fill it with the things you love!

So my friends, I don't have an answer for the way JB behaved and how he made me feel or even how he made my daughter feel.  That is a work in progress that will take time.  How we let his behavior make us feel though, is something we can control.  It's something we should control....otherwise we get lost.  And being lost...well, I did that this year.  I did not like it.  I am not saying I won't be lost again...but, I am going to work hard to recognize when I need help, when I need to choose....and I realize I will need to remind my daughter as well....

So....let that be a lesson to us all....happiness is a choice.  I sure have missed blogging...it's good to be back.

TTFN

Martha

****Thank you KM, you know why!