Bingo! That Was A Victory

Been a few days since my last post.  I've started writing a few blogs in my head, but nothing that I felt like putting in type.  The boys have been home for a week and that just means busy busy busy.  It's been a good week for the most part, but a lot of parenting needed.  I had intentions of getting a lot of housework and organizing done, but played referee for the majority of every day.  There were highlights of course.  We watched movies, played games, had a play date, built a lot of Lego, went to a Kids Crazy Hat Bingo, perfected our paper Star Wars ship folding, read together, went skating, went out for breakfast, went to Elbow Falls and didn't really clean the house at all.  Got one room clean and organized.  The rest of the house is a disaster.  Wonderful to have the boys home, but a lot of work.  Every activity needs me to mediate or guide them somehow.  They really have a tough time playing and interacting with each other without me guidance.  It always starts out fun and playful, always ends screaming and fighting.  It's pretty tiring, but it's hard to leave them alone to play, so I stick close by for the most part.  I know one day I'll look back and be grateful for all those special moments when I was close by and got to share those times with then and I do truly love the time together, but right now, I just really would love a clean house.  Please, nobody pop in for a visit.  I would die.

In an effort to organize our house, I took the opportunity of having the boys home to have them help me clean out their room.  Get rid of some toys they no longer play with.  Organize what is left.  Sounds easy enough right?  Nope.  It's a big change and change doesn't happen very easily around here.  It took us three days.  It's not a huge room.  And that didn't even include their dressers.  This act alone caused so much anxiety and stress in our house over the week that looking back, I'm amazed we even got through it at all.  Good thing is, they have been keeping it clean, tidying it every night.  Now we have a large box of toys to get rid of.  Yay!

We did have a victory that I almost missed until I was sitting in the midst of it, in absolute awe and bewilderment.  I brought the boys to Crazy Hat Bingo on Friday night.  (Organized by a lovely mom group I belong to.)  The intention was for the kids to wear a crazy hat, come play bingo, dance a bit, and have some fun.  Well first of all, they had to drag out every hat they have, "crazied" them up and brought them all.  I think we had 12 in all.  They just could not decide which one to bring so they brought them all.  Always come prepared I guess.  They are Beaver Scouts after all.  Well we got there and Adam decided to wear his Space Helmet (thanks Mel - it's a bucket, cut to look like a space helmet - very cute).  Anytime anyone said it was a bucket, he was sure to correct them with, "No, it's a space helmet."  What a kid!  Aaron was undecided and changed his hat a few times.  First a viking hat, then an army helmet, then a beanie hat.  Completely undecided.  I guess it was his anxiety already creeping in.  He gets very anxious about fitting in and very competitive about games/sports.  We work on this by having family game night every Friday night, and he is getting better with us, but he had a tough time on Friday.

So, Adam won the very first game of bingo and was beyond thrilled.  Aaron waited and waited and just wasn't getting any numbers.  The happiness and excitement was wearing off really fast and I could feel it.  I made sure to stay close to him so I could put out any fires that sparked.  He was getting more anxious with every game, really with every number called.  This is hard to explain because so few people see it happen and I know if anyone who was there reads this they will say that both boys were great.  It is true that we see what our kids are doing more than anyone else does.  It is also very true that Aaron has a way of making sure I know he is stressed out and I know what he is doing that mostly only I see.  He's a master at this.  Does it at school all the time.  He makes sure I know how he is feeling but hides it so well from others.  And I guess at the same time, it is me that should be in tune with him to pick up on his signals...and I do.  So as each number is called, Aaron is getting more and more anxious, clenching his fists and his teeth, holding his breath, getting angry, his face is turning beat red.  I try explaining that every child there would like to win but that isn't how it works and that he needs to just enjoy seeing his friends and have a good time.  He doesn't even hear me.  Eventually I get him to sit on my lap, hoping I can help him settle.  Works only for a few minutes, then he's stomping on my toes every time he doesn't get a number and if I get too close he tries to head butt me.  It's difficult.  I want to leave but Adam is enjoying himself and trying to win again so he can let Aaron pick a prize.  (He sure does have his wonderful moments, that boy.  So kind and thoughtful.)  I also don't want to leave because I think it is important that my boys face the situations they find difficult and any opportunity when I can be there with them when they face them, is a win/win for us.

It's hard to watch your child go through this.  Watching him itching to dance with the other kids between bingo games but not trusting himself enough to just go and do it.  Dancing is something he loves to do and does it so very well.  Already at this young age watching stress and anxiety control how he feels about himself, worrying about judgement and teasing if he should have a misstep.  Adam felt it a bit too and didn't want to dance, but he was so joyful, he just couldn't contain it and went and busted a move or two.  Back to bingo, Aaron says, "Why is Adam getting numbers and I'm not?"  What do you say?  And then comes the Law of Attraction.  "Adam doesn't care if he wins or not.  He's just enjoying himself and being happy.  When you are happy, good things happen.  When you are unhappy, bad things happen."  It sunk in!  He just looked at me with knowing eyes and he got it.  Then he says, "I need to go be alone a little to calm down.  Please watch my bingo card."  And that is what he did.

That was the victory.  He got it.  It didn't necessarily last and it didn't change his mood much, but I know the seed is planted.  That's all I needed, just a sign that it can happen.  It's a small victory, but it's a huge step.  This is the reason we don't medicate, this is our hope for his future.  Just the acknowledgement that we can teach him to recognize his stress and take actions to control it.  Aha!

He didn't dance, he didn't win, he didn't need too ... he grew.

The evening also showed me that although the quest to get a diagnosis for Aaron has been so long, it is still necessary.  As a parent in this situation, I am constantly looking for a shimmer of light saying there is nothing different about my child, always second guessing, always researching, always searching for an answer.  Sitting there with Aaron in my lap while he's stressing out, while Adam (who has an Aspergers diagnosis) is happily playing bingo, not a care in the world, it baffles me that in reality Aaron often shows more signs of Aspergers than Adam, but Adam got the diagnosis rather quickly (at only 5) and we are still fighting for Aaron's (he's 7).  I've been told there is nothing wrong with him, just really smart and I should medicate him (not by our doctor) but I know that is not the case.  He is a very smart, gifted boy, but that is not what is doing this to him.  That is not what has him even questioning his own actions.

Anyways, it has taken me all day to write this blog.  The boys have been on edge a bit after getting back to school today and Adam was a very grumpy bear going to bed.  He ended up rolling himself into a tight little ball and literally growling himself to sleep.  Of course, Aaron picked up on that energy, as he always does, and just woke up with a night terror.  But, I was able to snap him out of it rather quickly, guiding him into the bathroom for a pee, getting him a drink of water and a little foot massage.  Only about 20 minutes of shrieking on his part this time.  I'm especially thankful that my hubby is learning how to deal with these things as they arise and is trusting me and listening to me when I tell him what works and what doesn't.  He is a wonderful and patient man, I'm so happy that he is seeing that this is something we need to work with, not wish away.

So, as I was tucking Aaron in he gave me the nicest compliment, "I'm so lucky to have a nice mommy like you that understands my stresses."  I told him that love is what taught me how to do that and I kissed him good night.  He flashes me that sweet innocent smile that he's been giving me since he was just a tiny baby, looking up at me with so much love and adoration in his eyes.  Melts me every single time.  He's just my little boy and time could stand still in that second and I would be fulfilled.

My Labels Opinion: Not Just a Bird, It's an Eagle

I'm tired of hearing people say "I hate labels" when in actuality, our society thrives on labels.  On our clothes, on our cars, on our neighbourhoods, you name it.  So why then, is it wrong to put an ASD (autism spectrum disorder) label on your child?  I've never understood this.  It is necessary to get the help you need for your child to thrive but it's almost taboo.  And sure enough, any time you do talk about an assessment or diagnosis, someone has to say "I hate labels".  If the child is on the honor roll, or an athlete, or a musician, parents are sure to point out those labels.  I wish I didn't require the labels that my boys have, but in truth, you get no help if they have no label.  Sometimes even with a label you get ignored.  To get what my boys need to deal with their behaviour or their challenges, we need a label.  Yes, every child is different and they are all unique, I get it, but why is there so much debate over labeling kids on the spectrum?  Why is there so much stigma?  Growing up no one got a label and a lot of those kids, now people, fell through the cracks.  They were ignored as bad kids instead of kids that need something to thrive.  Statistics show that a huge majority of what would be considered some of the most brilliant minds the world has ever known were on the spectrum, aspergers most often.  Let's see, Hans Christian Andersen, Emily Dickinson, Albert Einstein, Charles Richter, Glenn Gould, Thomas Jefferson, Stanley Kubrick, Wolfgang Amadeus Mozart, Isaac Newton, Andy Warhol, W.B. Yeats, Jonathan Swift, just to name a few.  Why wouldn't I want to link my child with the greatness of these people?  Oh, I get it, because it isn't aesthetically pleasing.  Aspergers or any ASD isn't always pretty.  But it is necessary to know what is going on with your child so you can help your child.  I often see children that have so much to give, but they are blocked by the ignorance of their parents.  Mom and Dad don't want to admit that their child isn't ... normal.  Well, here is the news, normal is just normal.  There are plenty of others as well, great minds, steered in the wrong direction, like Hitler, Jeffery Dahmer, Ted Bundy, Charles Manson, eck, I won't even continue this list.  Was it ignorance to their needs that led them astray?  Perhaps. 

We have known for some time that our boys were not normal.  I remember the day Aaron changed.  Engraved in my memory and it always brings me tears.  Not because I require him to be normal, but because being anything but normal brings some hardships that nobody wants their child to endure.  I cried for three days when I was given Adam's official diagnosis just a few months ago.  Knowing something and hearing that it is true is gut wrenching.  I'm tired of getting the sympathetic "I'm sorry" and having to explain what aspergers is and having to reassure other people that my boys will be okay in the long run.  Right now, in the midst of it, is hard.  Harder than most would even want to know, but their futures are lined with silver.  There will be down days for them.  Finding their place in society will be their most difficult task, but they will live lives of great men.  How can I say that?  Because I believe it.  Because I give them tools everyday to deal with challenges bigger than them.  Because it is their fate.  They were given these labels because they are unique.  Because they have more to give.  I am especially tired of people thinking they need to convince me that my boys are fabulous and so special.  I know that already.  I don't believe it is the aspergers that causes them so much duress, I believe it is the world's perception of aspergers that causes the duress.  It will forever be difficult to fit a square peg in a round hole.  If the label isn't the popular choice, it seems to always be the wrong choice.  Greater minds than ours are what make progress in this world, but we stiffle them rather than embrace what they truly are.  We only want to reap the rewards of those minds, we don't want to see them at work.

I hardly feel qualified to provide my boys with the tools necessary to achieve their goals.  But somehow I've been chosen to do this and it teaches me so much.  It changes me everyday.  Some nights when everyone has gone to sleep, I just sit there in the dark and be still.  Just waiting for the new me to catch up with the physical me.  Waiting for the energy of the day to stop and the metamorphosis happen.  Mind you, sometimes I just cry because it is very overwhelming and my body can't do anything else at that moment but release.  Crying is the easiest release.  Sometimes  I just sit in stunned silence and breathe.

I was explaining snow rainbows to the boys this morning, which is so very cool to see.  How the sun knows it's not raining on the earth, but there is a cloud or two that has a lot of water in them, so the sun let's those clouds do what they must and we get to see what that looks like, but only if we are paying attention.  Snow rainbows aren't big, but they are there and those that are looking get the treat of seeing them.  After witnessing it this morning, Adam tells me when we get to school.  "Mommy, I was watching that snow rainbow and I'm thinking.  Why am I me?  Why am I myself?  Completely me.  My body works on it's own.  My brain works on it's own.  Why?"  How to answer this and he demands an answer.  Trying to understand, I have to ask, "What do you mean?  Why can you have your own thoughts and function on your own without someone making it work like a robot?"  Yes he says.  So I told him, "You have a purpose in life.  You were given free will to accomplish what you need to.  No one can tell you what that is or how to do it.  You were given your mind, your body, your soul, your heart to find that and do it."  He was satisfied.  He is 6.

Wow, I think it's safe to say I have an opinion.  This wasn't the blog I was going to write today.  I was going to explain how awesome it was to go to the wave pool with Jake and the boys this weekend.  We had fun and not a lot of issues.  It was a new experience and we always try to set them up for success and it was pretty successful.  Aaron felt very brave, which was awesome, but then kept trying to run away from me.  Spent a lot of his time trying to go and do his own thing, which is fine at a certain distance, but then the smallest thing would have him running back to me.  If I'm not close enough, he would have melt down.  It's scary stuff.  Be close, but not too close.  I was also going to blog about Adam's friend's birthday party experience.  He didn't have us or Aaron there with him and I gave the mom my number to call if he needed anything.  Made sure to let her know he has aspergers.  Had to explain what it was.  Got a call about 1 1/2 hours in.  He was in the washroom crying and wanted his mom.  He didn't feel like he could wipe his bum himself and do a good enough job.  Yes I know.  He's sensitive about it and they didn't have the right toilet paper for him.  Yes I know.  I came, he had calmed down and was having fun by the time I got there.  So I let him keep playing and just stayed there with him, on the insistence of the parents.  But of course, heard a few of their adult friends talking about the boy in the dark blue shirt.  It's frustrating and heartbreaking.  Adam always wins over the room though.  Everyone singing Happy Birthday and he's the boy who gets them all singing cha cha cha after every line of the song.  He's the one heckling the magician.  He's the one using his manners and thanking the mom for inviting him.  That was the blog I was going to write.

The blog I did write came from my drive home from the school this morning.  After discussing my boys with a dear friend at the school and some label issues we have had recently, I was lost in thought and contemplation when I stopped to watch a baby eagle and a mama eagle in the trees by our house.  Two more eagles landed in the tree next to them.  I always tell the boys that seeing an eagle is good luck.  I have always felt a connection to them.  So in contemplating my conversation with my friend, it dawned on me, that even an eagle is not just a bird, nor does it have the desire to be just a bird, it's an eagle, it's proud of it, you can see it, an eagle doesn't care if you believe it is more than a bird, it is majestic.  You can never just call an eagle a bird.  Never.  I dare you.  It just feels wrong.  It's an eagle.  My boys are not just boys and they need to be proud of that too.  I need to make sure they know that not conforming to what is expected but doing what feels right is a better label to wear and they need to be proud of it, just like an eagle.

Play The Hand You Are Dealt

It's a tricky hand to play when your children are on the spectrum.    There is a constant game in play.  You always have cards in your hand.  Do you play that one now?  Do you stay?  What do you do?  This is not a game of solitaire.  No no no.  Everyone your children interact with are  playing the game with you.  They probably don't even realize how much a part of the game they are.  They might not even know the rules.  Well, no one really knows the rules, they change depending on who is in the game and who's kid is at play.  But nonetheless, every one of their moves, even just their thoughts, change the hand you will play.

I'm facing an obstacle I didn't expect with Aaron.  His tourettes is getting a bit out of control lately.  That's not the problem we are facing.  The problem is that he's having a hard time hiding it like he usually does.  Don't get me wrong, I don't require him to hide it.  I require him to do what feels right for him.  He knows he is perfect in our eyes, but how he deals in a social setting is up to how he feels.  He has chosen to fly under the radar and try to go unnoticed.

Yesterday he ticked a lot and it was pointed out.  It wasn't intentionally done to cause him any duress, but it was done.  And he felt horrible.  I picked the boys up from school and he told me immediately.  I won't go into details about what happened exactly, I don't want to publicly chastise anyone.  He was upset.  We came home and he hid under a mountain of pillows and blankets on our bed for hours.  Screaming, crying, wanting me there but only hitting me and telling me to go, hating school, hating himself, calling himself stupid, wanting to die.  It's horrible.  We have been here before and it never gets easy to hear or see.  Never.  And all I could do was cry with him.

You can barely see his head in the middle there.  Dudley his RCMP stuffy guarding him.

He has done an amazing job keeping up to his peers.  He blends in nicely at school.  If you know what he struggles with, you can see it, but it's not easy.  He does this.  This isn't what we asked him to do, this is what he figured out how to do and every year of school he gets better at hiding it.  It's amazing that he can.  Aspergers is a very social issue.  His genius little brain figured this out early on.  And now in grade two, he's been outed as being different.  He's crushed.  It's sad to see that something so slight that would not have affected an average child has such a deep affect on him.  It's a sad reality of his life though.  To most families this would be a non-issue, but to this family, it is a huge issue.  This could be a turning point to him.  People with tourettes go to great lengths to veil their problem any way they can.  I don't think I can fold this hand, I can't even discard.  This game is not over.

I have great support at the school when dealing with my boys and it isn't something I want to compromise.  So my hand just got very difficult.  What does this mama need to do?  That's the hand I'm playing now.  Do I hope that the lesson has been learned by the person who did this?  Or do I go in and make sure the lesson has been learned?  I have utmost respect for every single employee of that school, I love and adore them all.  But I have told the story many many times about Aaron's issues.  It is well known by everyone who deals with him on a daily basis.  So when this person was confronted with yesterday's problem, by a neutral party, this person let them know that they do not believe there is anything wrong with Aaron.  Excuse my language, but are you fucking kidding me?

Obviously nobody knows but me of all the night terrors, fights, anxiety, stress, confusion, paranoia, just to start the list slowly, that I deal with on a daily basis just from him alone.  I am thrilled he does such a good job fitting in, but as soon as we leave the school, the cork pops on that bottle and we are in for it.  I'm annoyed.  No, I'm past annoyed.  I'm furious and I'm discouraged.  I've been trying to help Aaron deal with these issues for over 5 years now.  I have jumped through so many hoops I should be in the fucking circus.  I have gone to the moon and back making sure that all the T's were crossed, the I's were dotted and I put a fucking smiley face on every damn exclamation mark.  I have waited on every waiting list.  I've filled out every form, some over 30 pages long, some of them twice.  I have done all tests necessary.  I'm the mom who when asked for something says, "we already did that, here are the results."  So to be told that this person does not believe that there is anything wrong with him, made me want to vomit.  Made me feel like all that had been for not and that my child is just floating.  Just treading water.

This is my child.  I know him better than anyone.  I grew him.  If I say this is how things are, you believe this is how they are.  I don't want this for him.  Why say he doesn't have aspergers or anxiety or tourettes or sensory issues?  Is that an assumption that I would want him to have it?  I want this for him?  It's beyond me.  It's like saying, "my child is allergic to spaghetti."  And someone saying, "no he isn't, I haven't seen a reaction."  WTF.  I endeavor to make sure that Aaron is treated like everyone else, but at the same time, it needs to be remembered that if aspergers or tourettes show up, that is handled differently.  As the child with an allergy.  Everything is the same, but if spaghetti shows up, here is the protocol.  Not rocket science.

Now to find my grace.  In all situations that upset me.  I like to think it through, process it and come out the other end shining like a fucking diamond.   I will put on my mom hat, but not the frilly, cute one.  I will get some answers and some results very very soon.  Anyone who knows me and knows how I operate, knows that there will be some results.  I don't back down.  I come ready for the fight.  I don't get nasty.  I get results.  And I usually leave the person giving the results with a sense of satisfaction as well.  I don't intend to be mean or cruel, just effective.  I am after all, the Queen of Fucking Diamonds and this is my hand, my game, my cards, my child.

And now I can breathe...

Moms Only See The Rainbows

It was my mom's birthday on January 31. She's an angel on earth. Anyone who has met her would agree with that 100%. And for that I am blessed. The earth was given a gift the day she was born. She has taught me so many things and I bet she doesn't even realize how many. Her approach to life is to embrace everything with love, kindness, understanding and hope. She aches for her family, even still, even as we age. Our choices aren't always what she would want for us, but she loves us all with more heart than a body could hold. Always wanting life to be just a little easier for every one of us. And yet, she sees all the good, even if it's covered in dirt and pain and frustration, she sees it there and picks it up every time. Stuffing it in her pocket, not making any noise about it, but knowing that just by being in her presence it will be saved and made whole again. I all too often hear people complain about their mothers and how annoying or bothersome they can be and I just can't imagine not having this sweet and wonderful woman as my mom. I look at my boys and see the closeness we share everyday and it's hard to imagine myself even in those shoes as a child. Sharing that kind of bond with someone and then I realize that I did share that and I do share that. The wholeness of the relationship I have with my mom has just become so much a part of my makeup that I don't even recognize it as a conscious act. It just is. I love her so very much, she is my queen. I hope she always knows my undying devotion, admiration and respect for her and I can only pray that I am the mom to my boys that she is to me.

Knowing my mom as well as I do, I knew that all she would want for her birthday is time. So I took my mom out for lunch and some shopping the day after her birthday. We talked a lot about her upbringing. She was also blessed with an amazing mom. But she told me more about their migration to Ontario, Canada from Mexico in the back of a 3 ton truck, when she was just a young girl. Her and her whole family were brought here to essentially work as slaves in fields. They even lived outside for the first couple weeks, in that field, sleeping around a fire at night. Their parents staying awake at night to make sure the fire wouldn't go out. I asked her if they were not discouraged. "Nope. It was an adventure for us kids. The field was beside the dump and that meant we ate better than we ever had in our lives." Wow. Again with the rainbows. I aspire to be like her. I also think it might be time to dig into our genealogy.

Here she is with my boys. They absolutely adore her.

I volunteered at school today, like I do every Monday and was kind of having a revelation of my own. Every Monday, like all Mondays, was filled with "how was your weekend?" And as I was saying fine, I was trying to recall my weekend. Then I did and I remembered that during the weekend, I had many many moments of utter despair but at that moment and when I woke up this morning, I felt refreshed and hopeful, remembering a fine weekend. We really didn't do much. We definitely didn't do what we expected to do.

Saturday we went and got some new snow helmets for the boys and some skates for Jake. Aaron spotted a bicycle in Canadian Tire and before we even knew it he was on it. He can't ride a two wheeler yet. He doesn't trust himself enough. We have tried and tried and it just isn't worth the fight anymore. He will when he is ready. So he rides with training wheels very well. He's scooting down the aisle and not listening to us. We get upset. He freaks out and is way off the deep end. What should just be a quite little correction from us, has resulted in a huge blow up from him and plenty of looks from others. Always fun. I got a lovely judgemental, your kid is an ass look from one man. I don't pass those by anymore. I gave him one back and said, "My son has aspergers." I saw a lady smirk and shake her head at the man's insensitivity, then she gave me a knowing smile. She knew what I meant and possibly what I was dealing with. That's all it takes.

So, in an effort to recover the day we planned a pizza and movie night at home. But, as it turns out, there was too much fighting and we watched the whole movie in 10 minute spurts because someone had to pee, someone had to whine, someone needed this, someone needed that, the dogs needed to go out, someone wanted a blanket, someone needed a drink, mommy was frustrated and done. There was fighting and carrying on and I kept thinking, why do we have to fight even just to have a nice evening? Why are we forcing them to enjoy themselves? Bedtime was no better. Whining for this and that and the other thing. Ugh.

Sunday we were going to go skating, but the boys could not focus enough to just get ready. Then Adam got it in his head that we should go swimming instead. Which was out of the question. This momma hadn't shaved her legs. Wow, did he scream. And when he has his mind set on something, he sees nothing else. So, we calmly told them one last time, "We are ready to go skating. If you don't get ready now, we aren't going anywhere." They didn't get ready. We didn't say another word and we didn't go anywhere. The looks on their faces about an hour later when they discovered that we weren't going anywhere, was absolutely priceless. It was a victory on our part. They were pissed off, but they saw that we weren't backing down and quickly dropped the subject. We had dealt with enough from the day before that we just weren't going to put up with anything. They instead resisted many other things last night and fought us tooth and nail on a few. When bedtime rolled around, we were very ready to say good night.

Then something magical happened. They went to sleep perfectly last night. Hugs, kisses, snuggles, love all around. And that's all it took for me to see the rainbow. I had a great weekend.