Still Writing.

It's no secret that I don't blog nearly as much as I had in years past.

I do still love to write and if someone gives me an idea or something rubs me the wrong way, you know I'm going right to Microsoft Word to write something for it's cathartic, therapeutic properties.

I have a couple pieces floating out there in the internet world.

First was a piece I wrote for Tania over at My Adventures in Mommyland.  She is doing a series on single parents finding love and I wrote the first one for her.  It's meant to inspire and I think anyone in the dating world could probably relate!

The other was a piece that was just released this morning for a local paper, The Bangor Daily News.  There has been a lot of upheaval and dissatisfaction within my school district this year (what's new?).  It's also been the first year that I 100% stand behind the autism program they have developed.   It started to come to my attention that no one really knows what goes into those programs unless you work directly with it or are a parent.  I have a feeling that the majority of parents of typical children in my son's school don't even know there is an autism program.  I wanted to write this piece to give a voice and make people realize how important it is to correctly fund these programs.  Honestly, I'm a tad anxious with the budget concerns that my son's program will be on the chopping block as it has been in the past.

So, even though I'm not writing here as much, I'm hoping you'll continue to read my new pieces and support them as you always have!

Growth & Hope

Sometimes it's hard to see how far he has really come.  There are everyday frustrations and to accept autism is to know that there will always be frustrations.  Some that come and go, some that stick around for years, some that will pop up out of nowhere.

But in general this whole autism thing is going good.  We've got it down these days and this boy always amazes me.

Christmas isn't always the happiest of days for families on the spectrum.  Routine is thrown off.  Senses are overloaded with smells, noises, and lights.  Lots of people are around wanting to talk to you and hug you.

We've definitely had holidays in the past that were less than happy.  Full of tears and confusion.  But those are like distant memories now.

It's been a couple of years since Brian has had a really hard time with Christmas and each one always tops the previous one.

We only had tears one time yesterday and it was when we didn't let him immediately set up the new electric train track he got.  He was upset but he just whimpered lightly and soon came out of it while he opened the rest of his presents.

I saw a post yesterday from one of my new friends, the mom was exasperated by how off and upset her young boy with autism was from the day's festivities.  And it really made me reflect on Brian's growth but also made me feel like I could offer her hope, which is the best gift I could give anyone on Christmas.

These Moments.

We were standing at the bathroom sinks brushing our teeth when Brian started stomping his feet in a rhythmic manner.

I watched him and when he stopped he smiled at me.  It was a smile of invitation to play.

So I stomped my feet back in the same pattern.

The reciprocal stomping went on for several more rounds when he decided to add in a spin.

I continued to repeat after him, both of us grinning from ear to ear.

The next spin was accompanied by him speaking the words, "Turn Around". 

It's moments like these, that sneak into the mundane routine of the day, that you miss if you're not living in the moment.

It's moments like these that will keep me smiling for at least a week.  The memory of this moment will push me through the tantrums, the SIBs, the cleaning of the bathroom. ..

These are the moments I live for.

The Elephant Series

People with autism often make an attachment to objects.

They usually can't be seen too far from their object of affection.

It's like a security blanket.

For some reason it makes them feel safe in this crazy world of ours.

I've met people with attachments to spoons, to long, stringy things, and of course to trains.

My boy goes through phases.

One whole day he was attached to a fish stick.

He carried it in his little palm while we ran errands, played outside, and was still there when he fell sleep.

Right now it's an elephant.

He's been going strong since June.

Brian doesn't need to carry him everywhere.  

He is able to go to school and most errands without him.

But when he does have him you can feel a sense of relief wash over him.

When he first sees him at the end of a long day, it's like watching a friendship rekindle.

I enjoy the elephant.  More than the trains.  And much more than the fish stick.

In many religions elephants are revered. 

 In Asia they symbolize strength and wisdom.

Hindu cosmology of Ancient India said that elephants supported and guarded the world.

That makes me happy.

I like the idea of Brian's new friend guarding over him.

And supplying him with strength and wisdom.

And hopefully that rubbing off on me.

My Mom Got Married.

A Wedding Tale Through Brian's Eyes

My Mom kept telling me that there was going to be a wedding.  She was going to marry Colin.

She made me a social story and we talked about it a lot.

I overheard her and Colin saying that they weren't going to put any pressure on me that day.

That they wanted me to enjoy it and if that meant I didn't participate in parts of the day, then no big deal.

I remembered that.

The day started off good.  My Mom had packed all of my favorite toys and I played with them while she had her hair and make-up done.

She even bought me some french fries to share with her.  I ate most of them.

Things were going good and I was starting to wonder what all this fuss was about getting married.

Then my Mom helped me get dressed.

What in the world was she thinking?

The tie and boutonniere didn't last five seconds.

I tolerated the shirt and pants.  

I mean, I made a fuss, but at least I didn't tear them off and go streaking.

I considered it.

The night before the wedding I had to practice walking down the aisle.

It was no big deal, quite easy.

I was suppose to walk with my cousin Layla.

I hesitated on the big day though.

I wanted to walk with my Mom.

She said I could if I wanted to.

She reminded me that it was my day too.

But I surprised her and I took that sign and walked down the aisle all by myself!

I was a little bit louder than I was the night before during rehearsal, but I did it.

       

So I get down the aisle and go to my seat.

And this is when I realized my Mom clearly had lost her mind.

I saw her pack me this great bag of snacks, toys, and my iPad.

She promised me it would be at my seat during the wedding.

Guess what?

She forgot it in the reception hall!!

I was not a happy camper and I was going to keep yelling so no one could hear what my Mom and Colin were saying.

But then Peter offered me his phone.  What a nice guy!

I decided it wasn't worth it for me to yell and cry.  

I decided this wedding thing wasn't too bad if I had a phone to play games on.

Then my Mom asked me to go up to the arbor to pour some sand.  I said no.

But then she told me I could bring the phone with me.

So I went up.

She gave me some deep compression squeezes while we poured the sand, so it wasn't too bad.

After the wedding my Mom asked me if I'd take some pictures.

Hello?? Didn't she know there was a band playing and a party going on in the reception hall??

I let her get one formal shot of me.  With my lemonade.

Actually, after the pressure was off of me for pictures I decided I'd photobomb my Mom's bridal pictures.  Love how Pipyr caught me behind my Mom!

Since I was finally relaxed and ready my Mom took advantage and got a couple more formal pictures with me in it.

The reception was definitely the best part of the day.  I got to dance, I got to eat gluten free cupcakes, I got to run around and make everyone wonder where I disappeared to.  

If you're going to get married in the future I think you should just skip the ceremony and get to the fun stuff!

I'm pretty sure I didn't do everything that that social story talked about but my Mom and Colin haven't stopped telling me what a good job I did that day.  And now I have a stepdad, which is pretty cool.

I guess having to wear those itchy pants and shirt were worth it.

All photos credited to Pipyr Photo.

I Got Your Back, Max.

If you are connected, in any shape or form, to the autism community than I am guessing you have seen and read the horrific anonymous letter that was delivered to the family of a child with autism.  When I first saw it in my news feed I was certain it was a fake.  However, I quickly found the news story and my heart sank with the reality. 

To Max's family,

I can't imagine what it felt like to hold that letter in your hands and read those words about your child.  My heart broke for you and I cried tears for you.  I cried tears for my son.  I cried tears for humanity.

Please share this image created by the National Autism Association

I just want you to know that that individual is a minority in this world.  I have to believe that.  For every one like that there are thousands wanting to express their love and acceptance with you.  Don't put any stock in her words.  Choose to listen instead to the outpouring of support that I have witnessed through all the social medias.

I have never met Max but I can tell you that he is a beautiful boy.  He has a kind soul that has probably never known hate for a single person.  He finds joy in the simplest of things and really appreciates those things and people that he loves.  I watched him giving high fives to the members of your community and his happiness exuded so much that I laughed on the other side of this screen.  My boy does the same exact jump and flap when he's excited.  Max's worth shouldn't be questioned ever.  His ability to love and accept and not hate makes his place in this world so much more important than the perpetrator of this hate crime (because that's what this is).

You are doing an amazing job as a family, it is clear in the joy that Max was radiating.  Stay strong and remember that you have an entire amazing supportive autism community that has your back.

Love,
Heather, fellow autism mother

Back To School Prep

Back to school time!  With that comes clothes shopping, buying supplies, and figuring out all the steps of reacclimating your child to school.

Every year we plan visits prior to school starting for Brian to see his new classroom, meet his new teacher, and peruse the halls without any other children there.

I meet privately with the new special ed teacher (yes, new, as the role seems to be as cursed as the Professor of Defense Against the Dark Arts in the Harry Potter books) and explain all the Ins and Outs of Brian.

And every August I update the document I made years ago, "Unlocking the Puzzle of Brian".

I have a number of personal "friends" going into Kindergarten this year with the autism diagnosis and a lot of questions from their parents about what they need to do.  Some would say my document is a bit lengthy or a bit bossy....however, over the years I have learned that I can't merely trust that the professionals in my child's life will understand the intricacies of autism.  I need to put it all out there, no matter how obvious I think it may be.

So far I haven't seemed to get any attitude about it (unless it's behind my back) and I've had outside evaluators comment in their evaluations that they had an excellent, thorough document given to them (mine).  I copy this every year and give it to EVERYONE on Brian's team- another thing I've learned through the years- you can't trust that they will all share information with each other.  So one goes to the ed tech, the special ed teacher, the regular ed teacher, the OT, the speech therapist, etc.

I'm including the link today for the document I made last year.  It's not updated for this school year yet as I'm a procrastinator and will probably be working on it the night before the first day of school. As I'm reading it I'm happily realizing he has made a lot of progress this past year, another bonus of having a yearly document.

https://docs.google.com/file/d/0B-io0njsv9jJZFhTb09nVVp6ZU0/edit?usp=sharing

I'm hoping this link will help some of those just starting this journey of autism and public education.  If you've already been there and done that, what works for you and your family?