Marching Forward

I’m sitting in My Boy’s room while he’s at the store with Daddy and I’m struck.  I’m in the process of a long overdue purge.  Between his birthday and Christmas we have stuff coming out of the seams of our small house.  So much stuff.

The sheer amount of belongings in and of themselves are striking but that’s not what made stop purging, grab the laptop, and sit on my boys bed to write.  No it’s how far we’ve come and how long we were stuck.

I’m looking at piles and piles of toys he never played with.  How we over bought and thought we were just spoiling him because we had the means.  In hind sight we were trying to find something, anything he would actually play with.  Cars and trucks untouched.  Stuffed animals hugged once and then forgotten.  Little people, alphabet toys used only to sing the songs or make the noises but nothing else.  We knew something was different but brushed it off, in hindsight it’s glaring.

I’m looking at a pile of board books heavily read and loved well past their time.  Touch and feel.  Simple sentences. Bright pictures taking up the whole page. Baby and toddler books read well into preschool.  We missed the sign that other kids were moving on.

It’s hard not to get caught in the missed signs, the missed opportunity to help him at a younger age.  I’m trying to get passed that and stay in the present because while it’s not always easy, the here, the now, with My Boy,(who insists he’s no longer a baby, or even a little kid, but a big kid) is pretty great.

Right now I am accepting the past and I’m looking at the toys we’re keeping.  The things that are well loved right now.  Many are even age appropriate.  Maybe, honestly I don’t know what age appropriate actually looks like.  However, his current toys are making my heart soar.  The emerging skills in drawing and playing.  The joy he gets from PLAYING.  It’s amazing.

Today he drew a rectangle with some scribbles on his MagnaDoodle.  The same one he’s had for a couple years.  The one we’ve shown him letters and numbers on but he only had interest in coloring the whole thing black.  He told me today’s picture is his bed and showed me that the top circle is his pillow.  Amazing!

Some of his favorite clothes are his dress up clothes.  He often pops his head out of quiet time to ask me to button or untwist something. If I ask if he’s a fire man he says “yes…I’m just pretending”

He likes his Legos and action figures and is starting to pretend play with them, even making them talk.  He takes care of a baby doll feeding, burping, and wrapping it in a blanket.  His books are more complex.  Not quite more words than pictures yet but still paragraphs that build on each other instead of single simple sentences.  He can tell you what happens and subtle little details about plot and the emotions.  If it’s a book he’s already read he anticipates the next page with impatient glee.

He’s making progress.  When times are hard I need to remind myself of that.  I have to believe, even in this time when some people are erroneously equating autism with violence and it seems like there is much to fear, my boy is going to be just fine!  Great even!

Admiting it’s not perfect

It’s been a rough several weeks.  I hate to admit it.  I hate to put it on paper.  I like to be all YAY Autism, YAY my kid.  Life is GOOD. But damn sometimes it’s just hard.

Usually, when shit is hard, I play the pain olympics in my head and minimize anything negative I feel.  I always lose because there’s always someone who has it harder than me.  There are people without jobs and insurance.  There are people with more severely affected kiddos who don’t have the access to services and resources.  Hell kids get terminal diseases.  When I put it in that perspective, I have it pretty damn good.  Still I know the pain olympics is never good.  When other people engage in it I tell them others’ situation really don’t minimize their situations.  Usually, I don’t take my own advice.

When I feel like I’m wading through glue and shit is just so hard that I want to sleep for a week,  I feel guilty.  I mean shouldn’t I be happy my kid is unique and awesome.  He wouldn’t be who he is if he wasn’t autistic. What the hell is wrong with me for not celebrating the awesomeness that is him?  For the record I don’t hold other parents to these same standards. Just me.

Right now, it’s hard.

We are trying to decide where the Babe goes to Kindergarten.  When I got pregnant I had visions of sending him to the school three blocks from my house.  I kept that vision after I emailed with a friend of a friend whose autistic kids attend and are successful at that school. It’s a charter school and everyone I’ve talked to has positive things to say about it.  After have a back and forth conversation with the Special Ed teacher, including sending his IEP and a handful of very pertinent questions, I got a very nice email that boils down to this line:

I don’t feel that we can provide (The Babe) the support he would need to be successful here at ____.

Ouch.  I’m glad she was honest and told me this before I even started the lottery process to get him into the school.  However, I would be lying if I told you I didn’t immediately call my husband crying seconds after I read that line. It hurts when doors are closed.  It just hurts.  I don’t want the Babe in a school that isn’t a good fit.  Rejection is never fun.  We still haven’t decided on a school and it’s seriously stressing me out.

There’s reports from school that they’re seeing some of his “old behavior from last year.”  I’m seeing them too.  I don’t know what is causing them.  I don’t know what I’m missing or how to make it better.  I don’t know how to help him and that just sucks.

Lately, there are just a ton of reminders that the Babe is autistic, and no matter how mild, he’s not typical.  Somethings are just going to be harder for him, and us. It’s not fair.  I’m tired and overwhelmed and I have a lifetime to go.  He has a life time to go trying to fit into a world that doesn’t always understand him or the way he thinks.  A world that while it’s more inclusive in some ways is flat out scary and discriminatory in others.  I’m usually upbeat and positive but right now it’s just hard and the uncertainty of it all scares me.

I just have to admit being a special needs parent can be hard…and that it’s okay.

Maybe someday I’ll be there, right now I just feel like a crappy parent for not relishing in every challenge.

I’m still lucky to be the Babe’s mom…sometimes I wish things were easier…without wishing he was different…if that even makes sense, probably not.

Looking for My Community

We are almost 3 months past diagnosis.  The words stated by the psychologist.  He has PDD-NOS, Pervasive Development Disorder-Not Otherwise Specified, An Autism Spectrum Disorder.  Those words crashed and broadened my world.  The door to seek out knowledge about my son opened.  That day the fear went away and was heightened all at once.  Getting the diagnosis gave me permission to let go of the fear and seek out answers.  Allowed me to get past the doubt and start learning what I need to do to advocate for my Autistic son.  I now realize that it is unlikely that our family will ever fit exactly into the cookie cutters stamped “normal” or “typical” and that’s all right.

My Reader is filling up with blog posts. I find one Autism parent or Autistic person’s blog and it leads to 3 more.  My son has Autism and I’m frantically looking for my community.  For people who understand.  For people who just know. The parents allow me to relate.  There’s therapies and hectic schedules.  Fears and triumphs.  The self-advocates give me hope for the future.  There are amazing people, who lead wonderful happy lives.  They also make me a bit apprehensive.  These wonderful people face discrimination and struggle in ways I’ve never thought of and can only attempt to understand through their words.  They give me insight into the way my son may see the world. I gain so much from others experiences, much more than I would on my own.

Autism is a wide spectrum ,or is it long or deep, probably all of the above.  I find little pieces of my son in many of these blogs but none are exactly the same.  Like typically developing kiddos, they’re all different.  Some are at different stages, ages, and all are affected a bit differently.  It’s hard to put my finger on, but the flavors are similar.  The same beautiful, amazing, sometimes heart-wrenching flavors of my son.

So I read and laugh and cry.  Slowly, I getting up the nerve to start comment and replying and joining.  My shy, introverted nature makes it difficult for me to move beyond the outside perimeter but I need community.  A safe place.  A place where others understand the language.  Where I can contribute without having to explain.

Still part of me feels like I’m not sure if I belong.  My son is on the mild end of the spectrum. Am I over-stepping by joining a community that encompasses the whole when I’m living at one end?

Accidental Screen shot

A few weeks ago I came across this link

Some how, completely unintentionally, I saved a screen shot while viewing it on my phone.  I must have accidentally pushed the the power and volume buttons.   It was at 0:28 of the video.  “This is going to be O.K.”

The video is beautiful and depressing and I think very real. Those messages convey what those parents feel at that moment in time.

I’m clinging to “This is going to be O.K.”  Right now I’m witnessing such growth, such progress, such amazement at my little boy.  I am hopeful, but I don’t think I’m naive*.  I’m the first to admit I’m new to the parenting and Autism party.  I know that it’s probably not going to be as easy as it would be to parent a NT kiddo.  I know that this wonderful hope probably won’t last forever.  I don’t think my kiddo is going to magically “cured”.  Honestly, I’m not even certain he needs to be cured.**  However, I do believe with the right tools and the right help he can be himself and thrive in our Neurotypical society.  HE is going to he okay and by extension I am going to be okay.

*For the record I reserve the right to change my mind about my state of naivety and really anything.  I’m certain as I learn more and my son grows older my views will also evolve.

**I’m not even ready to touch the very real debate about acceptance and cure.  I only very recently realized there is a very heated dialogue going on and I’m not sure there is a right or wrong answer. Like most things it’s probably somewhere in the middle and deeply shaped by individual experiences.  I’m not yet sure where I fall in my beliefs yet. I do know they will be shaped by my child, HIS strengths and challenges. It won’t be reflective of the entire Spectrum of Autism.

Well We Survived the Day

Well as of the time of this writing we did anyway.  I don’t trust today.  I don’t trust September 5th at all.  Bad shit happens on September 5th.  Now that’s not really true, bad shit has happened only on three September 5ths. But two of those years it was REALLY BAD.  Two lives claimed one year apart.  One a tragic accident, one Cancer.  My older brother and my uncle.  I was incredibly close to both of them.  It sucks.  The 3rd incident was just a minor car accident but punctuates that today is not to be trusted.  In general I am not  superstitions person but I can’t shake the feeling of impending doom surrounding this day.

Four years ago was actually a pretty fantastic September 5th.  I held my breath and cringed at every sudden stop but we brought our baby home for the first time and started our amazing life as a family instead of a couple.

Wait thinking back even that day was fraught with the potential for doom.  Late that night The Babe’s temperature dropped way to low.  We spent the evening on the phone with the emergency line nurse, holding our new baby to my chest while The Husband piled dryer warmed towels on me and him.  Very narrowly avoiding a trip to the emergency room.  The what ifs had I not taken his temperature are bad.  F-the 5th of September.  Good riddance.

Still I’ll feel the weight of fear until all of my friends and family are accounted for tomorrow.  Although tomorrow my brother and my uncle will still be gone and the world, or at least my world, will continue to be a little less bright without them in it.

Four.

My boy he turned four today. 4.  He holds up the right number of fingers and says “I’m four”  It wasn’t long ago that I questioned if he would get it this year.  He didn’t last year when it seemed all his little friends did.

I know I’ve been rambling on and on about how awesome he is and how much progress he’s making.  I can’t seem to stop myself.  I am overflowing with hope.  So many things are just clicking for him and for me.  I’m not the only one to see it.  His teachers do.  My husband does.  His grandparents see it too.  It’s amazing to watch.  To be a part of. To be his mother.

To put this in perspective.  Almost exactly a year ago when the special ed teacher at his inclusive preschool first came to me.  He was

• Only talking in 2-3 word sentences to get his need met or to label things
• He was parallel playing and not really engaging his peers
• He was dumping toys instead of playing with them appropriately
• He would answer a question (including yes or no) by repeating the last word said to him.
• He was timid on play structures
• He couldn’t sit really at all during circle time at school.
• So much more

Now NOW

• He talks on and on and has conversations.  Something I didn’t know when would happen. The give and take of conversation still requires a lot of effort but he tries so hard and succeeds
• He’s engaging his peers and playing with them.  It’s not always appropriate and he doesn’t always understand the unwritten rules of the playground but HE’S PLAYING WITH HIS PEERS
• While I don’t think his pretend play is at the level of his peers he’s engaging toys appropriately and doing more pretend play.  Today he was a worm slithering on the floor and then a grasshopper jumping with his cousin.
• He answers yes or no questions and multiple choice questions appropriately.  He answers more complex questions too.  He doesn’t always understand why or what  questions but he’s trying.
• He climbs all over play structures.
• He sits through non-preferred activities (circle time)
• He’s trying to understand emotions and facial expressions
• He has a case of the Why’s.  I never thought hearing the question why 50 times a day would be on a list of awesome and not annoyance.
• He sometimes talks so much I long for quiet and then I remember where he was, I smile and keep listening.
• So so so much more.

I can’t even tell you how many times my eyes have teared up with happiness and hope over the last few weeks.  It’s just amazing.  He is just amazing and to steal from a status I posted on Facebook late last night.

Exactly 4 years ago I was in the hospital coming to terms with the fact that it was really time and we would be leaving with a baby. I had no idea what I was in store for. None. If I’m being honest I still have no idea what the future holds. Still, like I tell Blake often, I am so incredibly lucky that I get to be his Mommy. So very lucky. Happy Birthday to my awesome little guy.

I have a four year old an amazing, wonderful, sweet, kind, smart, autistic four year old.  I am so fortunate.  So lucky.  Even thought I’m not at all religious,  I feel blessed.

Transitions

Transitions tend to be difficult for those on the Spectrum.  At least that’s what all the books tell me.  I haven’t experienced it much first hand.  Still every questionnaire I’ve completed has asked about transitions.

In general The Babe does well with transitions.  Not perfect but pretty good. When we went on vacation he slept in a queen sized bed on a separate floor from us with barely a peep.  At home he’s in a twin on the floor. Speaking of which he transitioned out of the crib last January with no problem. He’s pretty go with the flow when we make spontaneous changes in plans.  Sure he prefers the same thing for lunch every day (PB&J) but he reluctantly goes with it when I change it up.  See over all pretty good.

Last night was not a good night for transitions.

For a while now his pull up has been dry in the morning when he wakes up.  The last few days I started talking up sleeping in big boy underwear.  He seemed pretty reluctant but I decided it was time to make the change.  All day to day I reminded him that he would be wearing underwear to bed.

When it came down to actually putting his jammies on over his underwear he lost it.  He screamed. He cried big giant tears.  He negotiated.  He told me he didn’t like it.  He wanted to wear night night underwear.  No matter how much comforting how much talking how much everything he struggled with calming down.  In the end I had to lay with him in his bed for about 20 minutes.  On the off chance I handed him the monkey he used to sleep with in his crib months ago.  It seemed to comfort him.  As I was leaving he told me “I sleep in my big boy underwear”  I’m proud of him.

Really it was only about 30 minutes but it definitely wasn’t a typical (even for him) reaction to a minor change. Then again I’m not sure I really even know what typical is these days. The Babe has been doing so well lately I often don’t think about how his perception and processing are different.  This reminded me that he is Autistic and sometimes everyday stuff is hard.

Update: He woke up this morning dry and said “I love sleeping in my underwears” <3