shoelaces & letting things slide...

I’m a bad mother.  I’m not sure when it started, maybe it was before he was even born.

He has troubles tying his shoes, so each day he slips them on.  We are in such a morning rush to get on the road for a nasty commute that I don’t even pay attention or notice anymore.  They are on his feet, there was not a meltdown of epic proportions and we are out the door.   And…. Yet I know in my heart that it is not the “right thing”, it’s not teaching him.  I don’t even know if it is just because I don’t want the fight at 6am to get out the door, or if I’ve just become too lazy to even care.  I’m tired, he’s tired, it’s done.   He needs to learn independence, self-reliance, handling the world around him, and yet, I’m letting him become reliant on me to get things done, or not even try to tackle any of it.

I guess it stems, to be perfectly honest, from me having depression and being bi-polar.  Some days I can barely even get myself out of bed to get ready, but I’m in charge of getting another human being ready for the day.  Then, to add on autism where he really only wants to do “preferred activities”, I have no patience other than to trudge along and get things done no matter what, no matter who has to do them. The process doesn’t matter, just the end result……. 

But , the process does matter….. he needs to learn things,  I’m not going to be here for him forever.

I’m at a loss, I know what I should do, but don’t have the energy to get it done.  I also know that I need to just stop doing things for him, he is a resourceful capable 9 year old that should be able to do some of these things.  I was forced at the very young age of 4 to survive and carry the load of many household things because my mother was ill.  I cooked, cleaned, did the laundry……. I never wanted that for my child, but in trying to “change the future” and let him be a kid, I’m not teaching him the stuff that needs to be taught…..

I’m a failure…….. and I know it…….. and I don’t have the energy to fix it…..

Sports, Scouting and Second-Guessing..(part 1)

Things haven’t been going the way that they were “planned” as of late.  Actually, that’s a lie. They never go as I had imagined when I first had my boy.

I thought of all of the things I would do with him once he was bigger…. Little League, Cub Scouts, School fun days, riding his bike, playdates with friends.  I had this picture in my mind.  I think we all get this picture once our children are born, it’s natural to think of the future fun.

But that was then……… this is now. I have a son that would rather read than play, has no real friends and is so afraid of failing -  so he doesn’t want to even try.... BUT he also wants to do what the other kids are doing. He wants to be involved in all that they do. 

So, in Kindergarten he asked me if he could play baseball.  He had seen the kids out practicing in the field behind his school. I was a bit unsure, but figured that all of the kids would be about on the same level, since they were all so little.  Boy was I wrong!  I had no idea that most of them started T-ball at 3 years old.  He was already behind the curve, but there were a few others, so his differences did not stand out too much.  It was hard to watch, but he made progress….. I made progress in not caring what other’s thought.  We still didn’t have a diagnosis, but I knew something was just “off”.

Our little baseball player

The next year he begged me to play again. By this time we had received the diagnosis of autism. I figured we would try and if he didn’t last the season, well, then we wouldn’t worry about it. He lasted the season, but even though he didn’t notice…… I did…… the differences were showing to the other kids. They were picking up on his quirks and making fun of him.  I played momma bear and tried to teach them to play nicely with each other, no matter who they were dealing with.  Once again, he was happy and once again, I was miserable. I was happy that he hadn’t seen the cruelness of kids, but hurt that when he finally did notice, that he would see it was directed at him.

I was happy that the next year, he never mentioned baseball again. I asked him about signing up, just in case, but he declined. I was thrilled when he didn’t want to.  I figured that he had just been bored in the outfield and that sports were just not his bag.

I was wrong once again. You would think that I would get used to this, but it still amazes me each time I’m wrong!  He piped up at the end of summer that the kids at school were going to be playing soccer and that he thought he would be a great soccer player. AHHHHHH!!!  I had hoped that we were done with sports, but alas…..  So I signed him up with the rec department with much trepidation. I pulled aside one of the board members that looked like a grandmotherly type during their evaluations, told her of my plight and asked if she could put him on a team with a coach who would be understanding and supportive. She was an answer to prayer. He had a great coach that never left him out.  He taught the kids to value one another and that everyone had different skills and traits.  It is amazing what a good coach can do.  He loved it, I loved the team and even though I could see the differences, we made it through a great season. Yippee!

I'm not sure if he is excited enough!

Fast forward to the next season……… He asked, I signed him up, I once again had a quick chat with the same board member…….. and lo and behold…….. we got a crappy coach!  The kids made fun of him, one kid actually hit him in the face with a ball on purpose (kid & parent were mad that he was punished by another coach that saw it) and he was only put in for a couple of minutes each game because he wasn’t a “star player”.  Many of us parents went to this coach about his attitude and behavior…… but it didn’t really change.  He still had fun, and it was nice to meet a great group of parents .  Now being 8, I could see so many differences, but we were better at working through them…… we were both learning.

Now I’m scared.  He asked me a few months ago to play baseball again.  He’s been out of playing for 2 years. The other kids have not. They have grown and matured, practiced, learned the game and built up skills…….. he has not.  The stark reality hit me the other day at his first practice.  (Oh, and his coach starts practice before I even get out of work, so we can’t make it, but don’t even get me started on that!)  While he was remembering all of the basics of throwing, catching, and hitting, the other kids were having a real game!  It was heartbreaking.  At Opening Day this past Saturday, the kids were grouping together, milling about, playing …. And he was hiding behind  a book. He wanted to be there, but didn’t know how to interact. I tried to engage the kids with him, but to no avail.  I so don’t want to watch this season. His coach is unaccommodating…….. it is hard. I fear most of all that this will be the year he sees the differences……….. and for the hurt that will come along with that. 

You might think that by now I would be able to overcome my concerns and worry about sports after these years, he’s 9 already, but……. I can’t, I may never, I’m just too scared for my little boy.

And yes..... I know I should happy that he can participate at all, many kids can't at all...... and I do know this in my heart, and I am happy that he can participate, it just hurts....... and I do feel the hurt for my friends who can't experience this at all..... that would like for their kiddos to be able to just try sports.... I do understand, but it doesn't change the hurt in my heart for my sweet baby boy.

Opening Day....... before it got crazy

I was wrong...

Sometimes when you first start on a new adventure, you are giddy with excitement and energy, hyped up on internet “facts” and “tips”, but all with a little ball in your stomach of trepidation, which you are too busy to listen to.

You make assumptions of what life will be like in the future, how you are going to do great things, accomplish multiple goals and gather up all of your friends to show them the “truth”……

And then…… actual life hits you square in the head. 

What in the hell were you thinking?

All of the grandiose dreams litter the path that you are trampling on, trudging on step by step, second guessing everything that you are doing.

Then,  hopefully you find others on your journey. They mix their ideas with your ideas. You do more research, talk to different people with different viewpoints.  They help shape yours to a more concrete actual view of this path that you are on.  You learn, you grow. The more that you lose your initial energy high, the more you feel comfortable in your own pace of the journey.

Once things settle down, you realize what you once believed is no longer your truth. You’ve refined it through fire and stress.  What you might have been so enthusiastic about at the beginning, you might actually find you no longer agree with, you can’t get behind anymore.

That’s how I feel about Autism Speaks.  I was wrong. I thought that lighting up blue was the answer. I thought that raising my voice for them would help my son, help others that are along our path. 

I was wrong – for him, for my friends, for their kids, for the autistic adults I have become friends with, and for all of those that I may never know…….. I was wrong. 

I think that my reasons are still valid, still strong. (my last post - years ago) I want acceptance for everyone….. we NEED acceptance for everyone.  But I can no longer follow their path….. for it doesn’t really speak for autistics and their families.

Imagine – Autism Speaks Doesn’t Listen……. Only Speaks.

And what do we teach our children? “ Listening Ears”……… and yet, they only Speak.

But they DON’T speak for my family any longer.

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If you would like to know more about the “why”, please go read a wonderful blogger at The Diary of a Mom - she said it so much better than I ever could!  – click    here     and    here

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What's so special about Special Ed?

“We shouldn’t be under the Special Ed department!”

Yes, those words stung…… actually, they still do months later.  If you think a kid said this, you would be wrong, it was a parent.  A “smart” parent….. a GATE parent.  In our district the Gifted And Talented Education program is under the Special Ed department.

In their eyes……

GATE = different but MORE

Special Ed = different but LESS

I tried to explain to them that the goal in Special Education / GATE really should be giving kids access to what they need to succeed…. Special programs to stimulate their learning, Special unique opportunities outside the school setting to focus on education , Special modifications to ensure that their minds are broadened intellectually.  Hence…….. Special Ed

When I discussed this with them, you would have thought that they were afraid that their special snowflake would “catch” something from their being “lumped in with the others”……. Yes, that’s how he phrased it……. “the others”.

Those words hit straight to the heart……

He and so many other parents think that very same way….. Special Ed is something said in whispers, kept in secret, not discussed.  But show me a GATE parent that doesn’t scream out that their kid “made it”!

And the kicker…….. he knows my child…… he’s known him for a few years.  He has said wonderful things about my kid and yet he says this to me during a meeting.  My eyes stung holding back the tears….. luckily his wife stopped him before he said anymore….. but what more could he have said that his tone and attitude hadn’t told me already.

I defiantly told him that …Special Ed is not less… uniquely, my child is part of both worlds… GATE and Autism…….. and that truly made him Special!

AND tell me this…….

Why do we have to struggle for accommodations and services?

Why do we have to go to meeting after meeting, fighting for our child, feeling horrible each time we come out?

Why is it just commonplace to have them actually follow the IEP……. So much so that we have tons of meme’s circling the internet with our battle cry?

It just SHOULDN’T be that way……..not at all.    But it is, sadly, so many parents I know go through this struggle year after year to “prove” to the district that our children are worth it….. that they should get the opportunity to learn just like “other” kids!

But, no matter what I said, it hurt.  It hurt for my kid.  It hurt for all of my friends and their kiddos that are looked on as different, but less.  It hurt as a part of society that sees this as “their truth”.  It hurt to know that in this day and age that if this were about gender or race, that people would be outraged, their hands in the air fighting…… but who’s fighting for our kids’ rights? For people to see them as whole, wonderful loving human beings that need acceptance. 

So when will “Special” stop being a bad word?  Let us come out of the shadows and be treated just like any “other” parents.

When will people realize that ALL kids are special?

Masks......

When we were kids, we couldn’t wait to see the stores line their shelves with boxes filled with Halloween costumes.  It was the 70’s, and they were nasty plastic/fabric wonders – think “hospital gown with two ties in the back to hold it all together.  Yeah, those…..  But the best part of it was the mask.  You weren’t that character until you put on the mask.  You couldn’t see, and the elastic band was totally too tight, but you could be anyone you wanted.  Whether it be Superman, Wonder Woman, The Lone Ranger or Princess Leia……. It was so exciting.  Do you remember that feeling?  You could BE an entirely different person.  The power, joy, FREEDOM coursing through your veins…….

It’s all still there as an adult…. But we probably don’t enjoy putting on those masks anymore.  We do it because we “have to” or we need to be someone that we are not.  We might have to use them to empower ourselves, because we really don’t have it inside of ourselves to do what needs to be done.  Or maybe we are hiding something about us that we don’t want people to see.  Possibly we are putting on that brave face that everyone has come to expect from us.  There are so many reasons.  But I have found that as adults, we simply can’t remove the mask.  We tend to just put another one on top of it to hide the first one.  Over and over this happens.  We could barely see through the first one, but the layers are making our sight of those around us and ourselves more obscure.  We come to a point where we finally forget who we are deep down inside, before we started wearing the masks.  I,  for one, would love if we all just dropped them to the ground, but know that is easier said than done.  I’ve created that façade that is hard to break and the emotional insecurities are just too much to handle. 

Wouldn’t it be nice and refreshing though if we all COULD do that? 

Fear on the Roller Coaster

Clink, Clink, Clink…….that sound of each notch of the roller coaster climbing up that hill.  Anticipation, joy, excitement, but then knowing that that fear is coming, waiting for the bottom to drop out from under you. 

Then you are plunged full force into the abyss, faster than you expect or want. Falling……not knowing when the bottom is going to hit.  Then twists and turns, every which way. Making you dizzy and losing your way.  Smaller ups and downs, unexpected and out of place – not knowing if they are going to be big or small ones. The rush of going faster and faster, the excitement of mania.....shopping, eating, everything more, more, more. Some areas of the track bright and clear…… clarity abounds.  Then a new turn and you are forced into a dark tunnel and you can’t see your way out.

If it goes on too long – you are ready to get off.  Then the sweet relief of coming to a halt and getting off of the ride…..

But – you can’t.  There is no relief……no way off…..no ride operator to stop the coaster.  The utter sadness that you can’t just run away from it… to close your eyes and make it just all go away. The utter fear that you can’t just jump out because other’s need you.

This is how I feel……. EVERY. SINGLE. DAY.

Numbness……. Just for a week, a day, an hour………that would be sweet relief.

I’ve wanted to jump out of the train more times than I can remember. As a child, I was torn between this and being the caregiver to my ill mother.  She needed me to cook, clean, even take off her socks. I felt like I couldn’t leave her – that I had to be there to help her.  As an adult, I held on tightly to the little hand of a blond boy that I loved to keep me from jumping.  He needs me in the car, as I fear that someday he will need to hold my hand on the roller coaster that will be his life. 

I’ve been too afraid of the unknown to just hop out onto the tracks.  Fear has held me back from every important decision in my life. I still haven’t dealt with the lowest dip of the ride.  That is tucked on a shelf, sealed up tight with layers of tape – I will not open it, it will sit there while the dust collects, but my mind is never far from forgetting about it.

This is the first time I have written about this in anything other than my journal. I am tired of being bi-polar……. Manic depressive……. The really high highs, the really low lows……..I want the ride to slow down and to let me off…..

Mohawk, fauxhawk…. or no-hawk???

As any autism parent knows – haircuts can be a *nightmare*, *hellish*, *horrific*, *scream inducing, panic attacking* (and that’s just me – not the kid!) …… whichever word works for you .

Well, except my husband – but that part of the story will come later…

So, for the past 7 years, I have armed myself like a solider going into battle - with a portable DVD player with his favorite movie, my iphone so that he can play games, and an extra dose of patience for momma.  I have prepared him multiple times with what is going to happen, I have let him pick out how he wants his hair from pictures on the ipad and reminded him of the beloved balloon he will get at the end as a reward for not going ape-shit….. (ok, that’s not the term I use with him – but go with it – you know the drill!)

As the years have passed, he has gotten better with the routine of it and looks forward to playing with their nasty germ-ridden duplos.  He likes the girls and finally feels comfortable at our local haircut place. Woo – hoo!!!  He still isn’t all that happy with putting on the cape or having them wet down his hair, but playing Angry Birds has kept his meltdowns in check.

Now – insert DAD!  You know, the guy that knows all about our struggles and processes to get said haircut – but has yet to experience it firsthand. Just write "newbie" on his forehead.

He decides that he needs to get his own haircut, so, low & behold, he is going to bring along the boy.  Since I’m at the grocery store (don’t be jealous that I was solo on my trip), he thinks that Little Man needs his haircut too, since it is past his eyes.  He asks the boy how he wants his hair cut. A boy in class has a “fauxhawk”, but since neither of them knows what that means, Little Man tells my husband “Mohawk”!  Fine with dad! Without further ado, my husband drives to a NEW hair salon in town. In the parking lot kiddo freaks out and tells him that this is NOT the place! On the fly my husband tells him “but this is the only place that cuts mohawks!”  They proceed to give him a super long, super crooked no spike Mohawk.  And you know what happened while they were doing this………..absolutely fucking NOTHING!  That’s right folks…….. no iphone, no movie, no meltdowns or tears!!!  FUCKING BITCH! 

Hubs now thinks that I have made this shit up all these crappy-ass years.  Beginner’s luck asshole!

In the days that followed he would not spike his hair at all.  I think he did it twice. My mother called it a no-hawk.  Three weeks later he begged me to get rid of it because he didn’t like it.  I am happy to report that his next haircut did go well (thank you iphone). He has come a long way.  I’m making hubs take him next time and pray that a meltdown ensues…..just kidding (really, but not really).