Life On The B Side

Taking all that life throws at us one moment at a time

… Someone with Autism … April 3, 2018

I didn’t know what it would be, but I knew I wouldn’t get through April without saying something about Autism Awareness month – or day (April 2nd).  I made it 3 days.

 

Here’s what I wanna say today.

 

Every time there’s an event Facebook makes frames available so people can show what they celebrate or stand for.

I have never done one but I can see the appeal.  It’s just another way to make your social media experience fun or to publicly show your support for a cause.  Predictably, this month they have ones for Autism Awareness and they say “I love someone with autism”.

 

I know it’s meant to be a good thing.  I know all the people who have framed their profile picture with it actually do love someone (or some people) with autism.  But for some reason, it seems kinda …… *I’m searching my brain for the correct word* … ahm … I don’t know … maybe like … it just makes me a little uncomfortable.

 

I don’t say that to offend anyone.  Not in the least.

To explain why I am not excited about the filter, I’ll ask a question …… Why only have the option of saying “I love someone with autism” instead of “Someone with autism loves me” ?

It feels to me like WE, neuro-typical ones, who are in the sensitive and powerful position of caring for and often representing someone who communicates differently and processes things very differently from most of the world, are the ones who should be grateful that our autistic loved ones are so patient with US.

We get so much wrong.  Year after year after year.  We make so many inaccurate assumptions about what they need or want or are capable of.  They love us anyway.  They don’t have to.  And they deserve all the credit when they do.

It’s my opinion that in general, parents are responsible for loving and taking good care of their children.  That’s the job you signed up for.  No matter what.  Children are under no such obligation.  I think parents/caregivers earn their love.

I know my son loves me.  He tells me yes, but he also shows me in a million different ways.  That’s despite my shortcomings and all the times I lost my temper with him even though it wasn’t is fault and all the times I pushed him when I should have sheltered and the innumerable times I misunderstood his behaviours or took my own exhaustion and frustration out on him when he was probaly even more exhausted and frustrated than I was.

How lucky am I that he hasn’t given up on me?  How fortunate am I that through it all, he keeps welcoming me into his heart and his world.  He keeps trying to explain and include and share.  He challenges my way of thinking and opens me up to new possibilites.  HE keeps teaching ME about patience and understanding and authenticity and accountability and empathy and appreciating the underappreciated and UNCONDITIONAL LOVE.

 

Yes, I absolutely, 100%, without any doubt and with my whole heart do love someone with autism – But, for me, the bigger (and better) news, is that somehow, even though I am a bumbling mess, I have managed to have someone with autism love me.

 

Science And Music? What? September 21, 2016

Sitting around the corner and listening to Jay study science with *Shaunie.
He’s learning it folks. About condensing, melting, freezing, the physical properties of matter, atoms, molecules etc.
He’s learning science!!!! At grade level. It’s not easy for him but he’s trying so hard.
He may not get an A on his test but he’s really learning and I couldn’t be more proud.
I made the mistake of thinking back on when I never in my wildest dreams could have ever imagined this. I couldn’t have imagined anything even close to this.
I don’t have the words to explain this feeling.
Too emotional.

 

 

That was my Facebook status the other day.  Our beloved Nanas commented that she always knew he’d get here.  I can’t say the same thing.  I always had high hopes for him.  Of course.  But I’d be lying if I said I always knew my son would be in a general education classroom studying the physical attributes of different kinds of matter.  I dared not assume that he’d ever be able to answer the question “What is an atom?”  Yet, that’s exactly what was happening.  

I had to dry my tears when I heard Jay get up and I realized he was making his way to where I was perched on the stairs.  

Later in the evening, I lay on the couch with him for a few minutes.

I wished him luck on his upcoming test and asked him if he liked science.  He said yes.  I asked him about math and reading.  He said they were OK but math is hard.  He said he prefers science to both math and reading.  I asked him what he thinks about his art class.  I wasn’t surprised to hear that he LOVES art.  

Lastly I asked him about music class to which he said “It’s loud in there and makes my ears hurt.”  

Jay doesn’t have a lot of sensory issues.  If he did have one though it would be related to sounds.  He’s not a fan of out-of-tune singing for example.  I asked him if he’d like me to talk to his teacher about music class.  I told him it was possible for him to do something else instead.  I thought for sure he’d take me up on that offer but instead he mulled it over for a minute and then said “No.  I will stay.  I think I can handle it.”  

These types of back and forth conversations will never NOT be a miracle to me.  

I am blown away by this child.  

 

September 4 years ago, I published posts where the big news was that Jay sat and listened to his first story.  I published posts where Jay was getting kicked out of 2 different social skills classes.  He wasn’t yet reading.  Heck, he wasn’t yet speaking in sentences.  Not even 2 or 3 word ones.  He definitely wasn’t able to take any kind of standardized test at school.  He was in an autism class where they were just trying to get through the day without anyone getting yogurt dumped on their head.  

Before bed last night, I hugged him tight and told him how amazing I think he is and how brave I think he is.  He shrugged me off.  He doesn’t get it.  To him, I’m just a Mom being mushy and weird.  That’s alright.  He doesn’t have to get it.  

 

To all the families who are currently where we were 4 years ago … I know it’s rough.  I know everything seems impossible or implausible.  I know all you want is for your child to say your name.  You don’t even know what your baby’s voice sounds like.  How can you think about science or music class?  Your brain is full – And tired.  I know you want one night of uninterrupted sleep.  You’d do anything to be done with diapers – After all your baby is now 5 or 6 or 10.  If you could just get them to eat 1 new thing you’d be happy.  You’re not asking for much.  It doesn’t have to be cauliflower.  You just cannot make ONE MORE grilled cheese sandwich.  But you will.  Cause that’s all your kid eats.  You don’t want to hear other people telling you to stay hopeful.  You sure don’t want to hear about how their child is also a picky eater.  You don’t want to hear about the things you should be doing or what worked for their neighbours kid.  You don’t feel like you are doing anything right.  You don’t want to fight with schools or insurance companies anymore.  You just want things to be easier.

My God, I get it.  

But hang in there.  It may not happen at the same rate as my son or anyone elses son.  That doesn’t matter.  All that matters is that you don’t give up.  Keep looking.  Keep trying.  Keep working.  Keep talking.  There’s no magic pill or therapy or device.  It’s HARD.  It’s ok to cry.  But just keep keeping on.  

ASSUME THAT YOUR CHILD CAN LEARN.  ASSUME THAT THEY ARE HEARING EVERYTHING YOU SAY AND ARE AWARE OF EVERYTHING YOU DO.  ASSUME THAT THEY ARE BRIGHT AND CAPABLE.  

 

The reward just might be your kid acting like it’s no big deal that they know what the volume of a mass is because in their own matter of fact way they will say “Yeah, I’m smart“.   

 

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.

 

April 30th Again April 30, 2013

I re-read the post I had written last year this time; April 30th; the last day of Autism Awareness month.  I was curious to see if or how my thinking had changed since then.

Basically, nothing has changed.  The same thing I wished for last year, is the same thing I wish for this year so I’ll give it to you again.  I bolded the part that I feel particularly strongly about.

 

 

My hope with awareness is not that people will know that Autism exists.  My hope is that people will learn something about it.  I hope that people will ask smart questions.  I hope that people will reach out and offer help to someone who needs it.  I hope that people will see that even though it does come with challenges (for some more than others), people with autism are not people to be afraid of.  I hope that people will feel less uncomfortable being around our stimmies.  I hope that by learning the varied effects that autism has, people will be less judgmental and more caring.  I hope that by getting to actually know someone with autism, people will see that there’s much more to our children than their disabilities or delays or silence or outbursts or obsessions or anxiety.  I hope that people will feel compelled to donate to autism related charities so they can keep doing research and so they can help families – like mine.  I hope that people will teach their children about compassion and will encourage them to reach out to a kid who seems to be struggling or looks like he needs a friend.  I hope that my son will grow up in a world where he is valued as an important member of the society and not seen as “weird” or “stupid” or “retarded”.

 

 

I took a big step this month in opening up my blog and my life to anyone who cares to read about it.  It was very scary and I had a few nights of not sleeping well after I hit “enter”.  I thought back on all the things I had written before and wondered if there was anything that I should take down.  I did edit one post slightly.  Don’t worry, it wasn’t any of the ones that make me look bad.  Those are still all there.

Seriously though, I believe that while having blue nails is cool, the single biggest thing I can personally do to raise awareness and de-mystify autism is to be truthful about what it’s like for real people.  Nothing has ever changed because people were silent about it.  The response has been all positive and I really appreciate everyone who took the time to let me know that reading my blog has helped them to understand autism better.

 

Blogging – Speed Dating Style April 8, 2013

I’ve never speed-dated but I do know someone who has.  He came back with funny stories.  Everyone knows what it is though. Men and women are allowed a short amount of time to get to know each other and then are rotated to meet other new people.  Since I’ve been out of blogging commission for a while I’m kind of backed up with stories and time isn’t going to stand still while I catch up so I’m going to speed-blog my way through the last week and a half.  I’ll start typing and when my minute is up, I’ll move on to the next topic.  I’ll miss some of, many of , most of the details but that’s the way this cookie is gonna have to crumble. 

Here goes …

 

My trip was good.  I won’t say it was great only because at some point everyday it rained.  I did get some beach and some sun and some fun and some relaxing and some good food and some good drinks.  The time off from my real life was great.  CC had his hands full with Jay.  That’s a nice way of saying Jay cried and fussed and screamed a lot.  I don’t think I’ll get another break like that again any time soon. 

*Ding* <– that’s my bell to move on. 

 

I came back on Wednesday and on Thursday, I took Jay to his social skills group.  It was a really rough one.  Maybe being on spring break is what made him go haywire but he cried and screamed A LOT.  Much like he had done all week with CC.  It started when his therapist took off his hoody – which didn’t used to be an issue.  It took a long time for the OT to calm him down and I had to stay with them the entire time.  We decided he needs more one on one time so we took him out of the group (AGAIN) and he’s going back to having one on one sessions. 

*Ding*

 

We signed Ace up for the Boys & Girls club.  He’s excited but surprisingly, he tells me that he’s shy about meeting new friends.  They will pick him up from school and keep him there till 6:30.  They have all kinds of activities which we hope will wear him out and then allow him to be more calm during class time.  We’ll see if it works.  Today is his 1st day.

*Ding*

 

We didn’t do Easter or an Easter egg hunt since I wasn’t here but the amazing Nanas got each boy his own special Easter box.  Jay had animal themed eggs and Ace got super hero themed eggs.  Both boys were happy with that.  She also gave each boy $5 and since Jay didn’t show any interest in his money, Ace has decided that he has $10 to spend. 

*Ding*

 

Jay didn’t get to take school pictures in the fall because of Hurricane Sandy.  They will take them tomorrow.  I’m really hoping they come out nicely.  I never worry about whether or not Ace’s pictures will be nice.  He loves a camera.  Jay is more unpredictable.  I can’t exactly send out or hang up pictures of just one kid though so whether or not anyone gets Ace’s pictures are hinging on how Jay’s pictures come out.

*Ding*

 

We’ve gotten to the point where sharing a room is not working out so well for the boys.  They love each other and they do play well together sometimes BUT they are SOOOOOOO different and they each need different things and they fight a lot and they need a break from each other.  We don’t have a way to give them separate rooms unless we move so now that’s something CC and I are seriously thinking about.  For the kids sanity as well as our own.

*Ding*

 

I totally missed April 2nd and Autism Awareness Day.  Oh well.  Not that I don’t care.  Of course I care.  It’s my life.  But I just don’t have the energy for it this year.  We’re also not doing the Autism Speaks Walk this year.  I’m not boycotting.  I’m just busy and my plate is full.  I won’t spend any time debating whether it should be autism awareness or autism acceptance or autism action.  I’ve read enough of other people’s opinions and again, I’m too busy living my life and trying to help my son, to focus on any of that other stuff.

*Ding*

 

Jay has taken a liking to video games.  CC started him on Spyro and Mini Ninjas which are kid friendly but Jay has decided he wants to play God of War.  I don’t know how I feel about that.  I think the part he likes about it, is figuring out the puzzles (which is awesome) but does it make me a bad mom if I let my 5-year-old play violent games?  I remember playing fighting and shooting games on my Sega when I was about 11 or 12.  I turned out (mostly) ok.  Anyway, he gets really into the games once he starts and ends up getting angry when things don’t go his way so then we have to turn the game off.  This story is still developing.

*Ding*

 

Ace is a better reader than I realized.  We went to the library and he chose the book “If You Bring A Mouse To School.”  In the car, on the way home, he read the entire thing to us.  The only word he didn’t know was “experiment” and even then he tried to sound it out and didn’t butcher it too badly.  I think it’s time he started reading chapter books.  Gonna take him back to the library today to pick one.

*Ding*

 

I had a lot of blog posts to catch up on when I got back.  Rest assured, if your blog is one that I usually read, I’m all caught up now.  I just haven’t commented because I’m so far behind and I’m trying to get my legs back under me.  I got to work this morning and there were 280 e-mails waiting for me.  And of course, more new ones kept coming in all day.  I’ll start commenting again soon.

*Ding*

 

The last thing that I was going to say today will have to wait, because that one I think needs its own post.   Here’s a teaser … We spent the day last Saturday at my cousins house.  There were good moments and there were not so good moments and there were moments that touched my heart and moments that made me feel like an awful mom. 

 

 

*Ding ding ding ding*

 I’m all out of time.

 

 

Bedtime Floortime October 23, 2012

For the past 2 nights, Ace has been tucked into bed, only for him to then get up from bed and make himself comfy on the floor.  He has slept there all night.  He says it’s like camping.  Who am I to disagree?

Last night, when I went in to check on them … Much to my surprise, Jay was on the floor too; next to Ace.  I asked Ace if he had told Jay to come down.  He said he had not.  He told me that he was laying there and the next thing he knew, Jay had thrown his toys and blanket down from the top bunk (which really should be Ace’s bed, but where Jay has been sleeping) and then climbed down and lay beside him.

 

We’ve seen and heard this before.

The question(s) is (are):

What is autism?  What are the symptoms of autism?

The answer looks (sounds) something like this:

People with autism are isolated in worlds of their own.  They appear indifferent to other people and are unable to form emotional bonds with others.

 

What’s that you say?

“In their own world”

“Indifferent”

“Unable to form emotional bonds”

 

I think not.

I think it’s time we change the way autism is described/characterized and the way it is presented to the world. That’s part of the reason that I tell my little stories here.  There are just too many exceptions to the so-called rules for us not to let people know about them.

*****

 

I’m going to stop the story here because if you GET this … if you GET why it was so huge for Jay to leave his bed and choose to join Ace on the floor, then honestly, I don’t need to say anymore.

If you don’t get it … then please come back some other time and read a different post.  Or better yet, read back through some of my old posts or find other blogs written by other moms who have children with autism.  You are sure to have your eyes and hearts opened.

 

2012 Autism Walk – NYC June 7, 2012

The NYC walk for Autism Speaks was last Sunday.  I’m very proud that I was able to raise $1,220.00.  All the thanks go to the amazing group of people that we have in our lives.  We had no corporate sponsors and no company matching.  All our money came from people who very generously donated from their own pocket because they know us and want to help us.  I really and truly appreciate it.

 

It was a beautiful sunny day.  Family and friends gathered to walk with us and the kids held up like champs.  Well, Jay held up like a champ.  Ace kept claiming to be tired and asking to be carried but I know he was just trying to get some spoiling.  I blame it all on Nanas 🙂   (Love you lots).

 

I’ll share a few pictures from our day and leave it at that.

 

Under the train tracks at the seaport waiting to start.  Jay was getting a bit annoyed at people bumping into him.  (“Thanks for taking me away from that Daddy“)

 

While Jay was just trying to stay out of the crowd, Ace decided it was the perfect time and place to sit and eat donuts.

 

It was a big crowd!!!

  

 

The man of honour – walking by himself and checking out the local flora.  Cause, hey, that’s what you do when you’re walking.

 

That’s my sister ya’ll. The pretty one in blue.   She’s a really great Aunty.  I’ve told you that before but it’s worth saying again.

(And, before you ask … I don’t know why I wasn’t wearing blue.  I just didn’t think about it.)

 

Mmm, hmmm.  Spoiling!!!

Oh wait, that’s me doing the spoiling, not Nanas.  (Oops! Wrong picture)

 

That’s better.  There’s Nanas carrying Ace.

 

Just chillin’ when it was over.

 

A “Jay Train” team photo.

Aunty Juddles, Me and Ace, CC, PD, Aunty Naffie and Grandma.

That’s Jay in the bottom left corner.  He wanted no part of our picture.  Typical 🙂

 

Then it was time to go home.

 

I’m pretty sure they frown on picture taking in the WTC tunnel but … I didn’t see any signs.

 

It’s So Easy To Judge June 4, 2012

I talk a good game but it’s hard work not being judgmental.  I know that.  I constantly have to check myself.

 

I see a kid who looks too big to be in a stroller and my initial thought is “That’s just ridiculous. Make that kid get up and walk.”

Then I think “Deens, (me) you don’t know what’s going on or if there is a medical, psychological, neurological whateverical reason that this child needs to be strolled.  Don’t judge

I hold the door open and smile at the mom pushing her very heavy child through the door.  If there is something going on, the last thing she needs is me rolling my eyes or making her feel any worse than she might already.

 

I see a kid who looks too big to be using a bottle.

Ugh, I think.  My kids were done with bottles at their 1st birthday. Why would a parent even WANT their child to be using bottles. They’re such a pain in the butt to clean.”

But wait … I have to stop myself.  I don’t know what’s going on.  Maybe the child won’t or can’t eat.  Maybe the mom has tried everything and has decided it’s better to let the child drink from a bottle than starve to death.  Far-fetched?  Maybe.  But I don’t know so I don’t judge.

 

I hear parents all the time talk about how their kid doesn’t sleep through the night.  I used to be the one who would say “Just let them cry it out for a couple of nights.  It works.  Both my kids sleep through the night and have done so since they were just a few months old.”  Little did I know then how fortunate I was (we were).  It’s not always so simple.

 

Recently, there was a lady in the supermarket with her daughter – who looked to be about 8 or 9.  The daughter asked her mom to buy a sugary cereal.  Mom said no and the kid lost her mind.  She threw a huge tantrum in the aisle and the Mom (looking horrified)  finally said “That’s it, no cell phone for the rest of the day.”  Another lady commented that kids today are spoiled and a child that young shouldn’t have a cell phone and back in her day, kids spent time outside playing instead of inside texting and playing video games.  I couldn’t NOT say something.  I very calmly told her, I don’t think it’s our place to judge.  We don’t know what’s going on in their family or what lead them to give the child a cell phone.  After that, Judgy McJudgepants, had no comment.

 

Now, believe me, I know that we’re the minority.  Those of us with special needs kids.  Maybe most of the kids that I’m giving the benefit of the doubt to, don’t deserve it.  Many kids are over-indulged and a lot of kids could probably do with some tighter boundaries but since I can’t look at them and tell which is which, I just assume that the parents are doing the best they can.  For more reasons than I can ever list, what works for one family won’t work for another.

 

No-one can tell just by looking at my Jay, that he has a lot of struggles.  He looks healthy.  He looks normal.  He’s cute and happy and playful.  No-one would know that when he doesn’t share his toys, it’s not because he’s spoiled.  You wont know that we work on his sharing skills ALL THE TIME and have made A LOT OF PROGRESS.  No-one would know that we allow him to eat cookies for breakfast, because often times, it’s that or nothing at all.  You won’t know that there was a time that he wouldn’t eat cookies so cookies for breakfast isn’t a treat, it’s a friggin victory.  No-one would know that even at 4, he’s still wearing diapers because he’s autistic and potty training is difficult for him and to be honest, it’s not at the top of our priority list.  No-one would know that we let him bring his i-pad to birthday parties because it keeps him calm and running around with a bunch of rowdy kids is not always rarely fun for him.   It’s a major accomplishment that we even made it to the party and stayed till the end with no melt downs.

 

I’m aware that  it doesn’t look like progress to the outside eye, but despite what you might think, my boys work very hard and I’m proud of them and how much progress they have made in all areas.   I’m proud of how far I’ve personally come.  I’m proud that I’m bold enough NOW to voice my opinion when I hear others making assumptions or jumping to conclusions and talking behind backs even when it’s not directed at my child.  Hey … maybe it was directed at one of your children.  And to me, one of yours is one of mine.

 

2 Things That I Didn’t Write But That I Think Are Amazing April 4, 2012

Hi Guys … Today, I’m kind of cheating.

 

Instead of spilling my own guts I implore you to read –> THIS <– .  I stumbled upon it yesterday and it’s sitting in my chest.  I love reading other people’s blogs but most of the time once I’m done reading I can move on.  Not this one.  I can still feel it.

 

Then this morning I read –> THIS <– and it made me think of my own demons and then I felt shallow and immature because even though I know it’s the way I should be (we all should be), I’m not there yet.

 

In any case, I hope you guys appreciate how brave these 2 ladies are for writing their stories and I hope you feel something and are moved in some positive way by what they have written.

 

A Delightful Weekend April 2, 2012

I know it’s April 2nd and I should probably write something about Autism Awareness Day.

What I can give you is that I put something up on Facebook and to my surprise, 2 lovely ladies (who happen to read my blog 😉 ) copied and pasted my status so that all their friends could read it too.  I almost cried when I saw it.  In my own little way, I think I’m spreading awareness and in their way, they have helped in a big way.  Thank you!!!

 

Other bloggers will write beautiful and tear-jerking and soul-stirring posts today.  I can’t wait to go and read them.  But for me, I’m gonna keep it simple and stick to what I do.  Telling our story.

…..

 

We had no plans for weekend at all.

On Saturday morning at around 8, we got a phone call from my Mother-In-Law to say she was on her way over.

Before you gasp in horror … I’m one of the fortunate ones who actually likes my M-I-L.  🙂

It was a welcome visit.  I like that my husband has a close relationship with his Mom.  I like that my sons have access to a Grandparent.  (My Mom lives in Florida and neither Grandfather is around)

We just kind of hung out at home and then we went shopping (which I enjoyed but CC could’ve done without) .  Then when the hubs left to take his Mom home, I got to spend the evening with my 2 little guys.

 

My oh my … Things are so different now.  I don’t know when it happened exactly, but it doesn’t seem that long ago that I was afraid of being home with both kids by myself.  I used to feel overwhelmed and anxious.  They were so difficult to handle.  Ace was too young to reason with and Jay was a crying, screaming, tantrumming terror.  I would count down the minutes to when CC would get home.  I would yell at the kids more than I should because I just didn’t know what else to do.  I would feel like I was barely holding on and that at any minute, I would lose it completely.  I hated feeling that way and even now it’s hard to admit that I felt like that.  But I did.   Back then, I didn’t think it would get any better.

But it has gotten better.

 

Thankfully, life is not like that anymore.  Now it’s fun.  I can truly say that I am enjoying my children in a way I never did before.

The 3 of us played together.  We played tag and we read stories and the boys made a big pile out of clothes and comforters and jumped into them and I watched them and smiled.  I didn’t mind cleaning up the clothes after they are done.  I just loved watching them play together and take turns and cheer each other on.

Ace occupied himself with an art project while I helped Jay to eat his jello and while he repeatedly jumped off the bed into my arms and then (thru giggles) counted to 3 which was my cue to throw him back onto the bed.

Jay took his i-Pad and quietly watched his videos while Ace and I wrote-up Easter cards and built Legos.  By the way, I have now made a grand total of 2 Lego airplanes and I’ve decided that I’m now a Lego master.  🙂

There was fun with Hot Wheels and an Animal Farm.  Jay found that tickling Ace’s foot while he’s trying to put together a new toy is a great way to annoy his brother.

We watched TV and Jay sang songs about baby animals.

 

I heard some news that I can honestly say I never in my life expected to hear.  Something happened that has made my Grandad so happy that there are no words to describe it.  He’s giddy.  It hasn’t always been smooth sailing as far as me and my Grandad’s relationship goes but I really love the man and it does something to you when you hear someone that happy.  You can’t help but be happy for them and it was a very nice way to close out my Sunday evening.

 

CC and I watched a movie after the kids went to bed and I got a good nights sleep.

 

So that’s MY story of this past weekend.

That’s MY bit of Autism Awareness.

I want people to be aware that it’s not all bad.  It’s not all therapy and work and bitterness and dashed hopes.

It’s not the worst possible scenario.  Not for us.

Even though it colours everything we do and it’s on my mind A LOT, this weekend, for us, it wasn’t the star of the show and we were able to have a really nice and happy weekend.