life on the "j" train

Taking a "busy working mom with 2 special needs kids" life one moment at a time

Our Autism – 2 Years Later October 16, 2013

I published a post a couple years ago in which I wrote about what Our Autism looks like.  What Jay having autism means to OUR family.  Which is totally different from what an autism diagnosis would mean to your family.  Or yours.

I fully believe that sharing our stories helps.  I fully believe that knowing other families are dealing with some of the same struggles as you helps.  I fully believe that our children need to know there is a support system for them and they are not alone and I believe whole-heartedly that sharing our triumphs makes them even happier; and often times, only another special needs parent can truly understand why seemingly regular things bring us the most joy.  I love the on-line community that I have found and I love that some of the relationships I have made have begun to spill over into my real life.

But still, we are all different.  All our children are different.  And how each family and family member is affected is different.

So anyway, on my post, Jeneil, from RhemasHope commented, in part, that “…you will see that your list will change in time …”

In that very moment, I knew that I’d revisit the post some day.  Just to see how things had changed for us.  Now seems like a good time to do that.  We are one month shy of 2 years, so here goes.  I copied the list from last time and made notes about each line in italics.

 

Autism is …

 

Something my son will always have. – Goes without saying.

 

Always wondering and worrying about what to respond to and what to leave alone. – Same.

 

Learning to pick your battles. – Same

 

Having a 3 year old who will become a 4 year old and possibly a 20 year old who can’t speak or use the toilet or write his name. – 🙂  Jay is fully potty trained.  Has been for over a year now and he has never had an accident – not even overnight.  He has quite a wide vocabulary and can not only write his name but is also starting to sound out words in an attempt to read. 

 

Not the worst case scenario. – Still isn’tNot by a long shot.

 

Not what any parent would wish for their child. – Again, still isn’t.  Not because of me, but because it makes both my childrens lives harder than I would want for either of them.

 

Crying because my son is crying and I don’t know why and all I want to do is help him. – Yup.  Same.  Jay’s crying and him not being able to communicate why is high on the list of the most painful parts of all this.

 

Laughing because my son is quirky and funny and loving and happy. – 🙂 Same.  There are few things I love more than happy, playful Jay.

 

Crying at the beautiful, inspiring, painful stories I read in other Moms blogs. – Oh yes!  Except now it’s Moms and Dads and Autistics themselves.

 

Crying when I think about the life we will never have and crying at the idea that Jay will ever be ridiculed or bullied by other children. (Yeah, lots of crying) – Not so much crying but definitely lots of worrying about these things.

 

Fighting with schools and therapists and insurance companies and doctors ALL THE TIME FOR EVERYTHING. – Sadly, I don’t think this will ever change. 

 

Acknowledging to my older son that it’s not fair, but yes, his brother can get away with things that he cannot. – To some extent this is still a battle, but I think we are getting better with this.

 

Making time to do all the things you HAVE to do (doctor, therapy, meetings, research, paperwork etc) but also making time to do things you WANT to do. – It’s a balancing act for sure.

 

Not spending family time doing things that you always wanted to do because there’s no way Jay will tolerate it. – We actually don’t miss out on too much.  Jay is pretty flexible.  Usually.

 

Being on edge whenever we’re visiting someone elses house because you don’t know how Jay will behave. – This is still somewhat true but I think it’s less of a worry now.  Mostly due to my openness about things and finding out that people are a lot more understanding and tolerant and caring than I gave them credit for. 

 

Feeling like you’re not doing enough. – Duh!

 

Never having enough money. – Double duh!!!

 

Knowing all the names of all of Thomas’ friends and watching every episode of Blues Clues and Wonder Pets. – We are done with this.  Yay!!!

 

Saying the same things over and over and over. – Same but it doesn’t bother me as much anymore so I probably wouldn’t have included it on the list if I were writing it for the 1st time today. 

 

Knowing I can’t manage more than 2 children even though I would love to have a 3rd. – Kinda. Sorta.

 

Toeing the line between exposing Jay to new people and protecting him from their judgment and scrutiny. – There’s less toeing and more exposing but I still feel a strong need to protect him. 

 

What brings out the best and the worst in me. – I think so.

 

Not daring to dream about the future. – Hmm, this is a tough one.  I do dream but I’m realistic. 

 

Opening up and sharing in a way that I never thought I could. – Most certainly.  So much of my life is now an open book.  It’s been both wonderful and terrifying. 

 

Making me stronger. – I don’t always feel strong but I know that I am.

 

Learning to appreciate what’s really important in life. – I do struggle with this at times.  I think it’s good that I read this today.  Gonna make more of an effort to be appreciative. 

 

Anticipating needs and trying to fend off temper tantrums at every turn. – Not at every turn.

 

Digging deep to really feel joy (and not jealousy) for other people when their children achieve big things. – I’ve come a long way here.  I do still feel a tinge of something sometimes, but hardly ever anymore. 

 

Making me abandon rules I always thought I’d enforce. – Yeah.  My kids definitely do things that I would never have imagined allowing.  Jay had Pringles for dinner last night and Ace hasn’t eaten any kind of vegetable in … pretty much ever.  Let’s move on. 

 

Scary and lonely. – Still scary.  Still lonely.  But less so.

 

Saying Many MANY MANY silent prayers that things will be ok. – Dear God yes.

 

Wondering if your son really can live on Chef-Boy-Ardee and Doritos alone. – Jay hasn’t eaten Chef- Boy-Ardee in at least a year.  Now he’s living on Cereal Bars and Ramen Noodles.  He’s still a fan of Doritos though. 

 

Knowing that it’s so easy for someone to take advantage of your child or mis-treat your child because he doesn’t have the words to tell you what’s going on. – I put some things in place to prevent this but there’s an awful lot of faith that has to be put in other people and that hasn’t gotten easier. 

 

Always on my mind. – The same, less 10%.

 

Not what I want to think about all the time. – I actually don’t mind thinking a lot about it now because it’s not all bad thoughts. 

 

Tough on relationships. – It certainly doesn’t make them easier. 

 

 

I will add now that Autism is not as overwhelming as it was before. It makes a lot of things harder for my son than I would like but so too, it gives him the capacity to see the beauty in things that others cannot see and belly laugh at things that others would find ordinary.  My voice no longer trembles at saying the word.  I have learned that being vulnerable is not the same thing as being weak and in fact, gives the people in your life a chance to flex their “being there for you” muscles.  There are days when Autism is the least of my concerns and when ADHD takes center stage.  Autism is just one part of what makes my son his amazing, wonderful, loving, (yes) challenging, gorgeous, funny, smart, independent, delicious, self.  It doesn’t make me love him any more or any less.  It doesn’t make me a better parent than the next, but I do think it has forced me have a more compassionate heart and to be less self conscious.

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3 Responses to “Our Autism – 2 Years Later”

  1. Jane Says:

    Fantastic post to revisit, I hope I feel like you in two years time :0) x

  2. therocchronicles Says:

    I love this! And Jeneil is right, the list will change in time as you have noted – love that there have been some awesome, really awesome progress for your boy (and you!)

  3. This is truly inspirational. It allows us to remember how blessed we are to be able to do things which we can. What a narrow divide exists between us and those who seem challenged from our perspective. But is our perspective the right one? Who is to judge?

    Shakti


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