You asked for it... Processing Our Life.

Some of my more observant readers have commented that I haven't been sharing much of myself in my blog lately... and it's true. So tonight I will change that. Mostly. There are a few things I just am not ready to talk about yet. Thanks for caring enough to ask though :)

I have been telling you all about what we are going through with Aiden and his Asperger's (potential) diagnosis. This takes up a HUGE amount of emotional energy in my heart and mental energy in my mind. I think about it constantly. How is he doing? How can we make his life easier, better, less stressful for him? How can I help him function at school? How can I explain to others how amazing he is so that they see past his "issues" to the wonderful kid that he is?

I have been doing a ton of research into Asperger's syndrome lately and recently I came across a wonderful site that really helped me. You can find it HERE.

A couple people have asked me what exactly Asperger's is and so I will give you an explanation I found on that site. If you are already familiar with it than you can just skip this part:

"Asperger Syndrome is a type of autism, and autism is a neurological disorder that affects the way a person interacts with others and his or her world. It’s not a mental illness, and it is not caused by weak parenting. In its more severe forms, it’s a disorder because it causes disorder in the life of the child. In its milder forms, it is more of a marked difference from the norm. In our culture, which judges people on the way they interact with others, these disorder-differences can have a profound impact on a person’s life.

You’ve probably heard the parents complaining about the difficulties they’ve had with the child in the home - obsessive behavior, irrational outbursts, wild fears, and irritability over the smallest issues. These problems are not misbehaviors, but rather the child’s responses to an inability to comprehend what is going on around them and inside them. Some experts have called it a “mind blindness,” one that causes the person to stumble and bump into complex social situations that they can’t “see.”

Yet by effectively “blinding” the mind to certain aspects of daily life, Asperger Syndrome enables the child’s mind to focus in a way that most of us are incapable of. They feel their feelings more intensely, experience texture, temperature and taste more powerfully, and think their thoughts more single-mindedly. In many ways, this ability to focus is the great gift of Asperger Syndrome, and is the reason why a great number people with Asperger Syndrome have become gifted scientists, artists and musicians.

It is as if the Asperger brain is born speaking a different language. It can learn our language through careful instruction or self-instruction, but it will always retain its accent. While Asperger adults go on to successful careers and interesting lives, they will always be considered unusual people."



There is an entire section dedicated to answering other peoples questions about what is going on in the family of an Asperger's kid. One question in particular spoke to me because I am constantly tired and I KNOW people wonder why.

Here is the question and answer from the site:

"The child’s mother looks exhausted all the time. Could that be a cause?

It’s more likely an effect. Consider what her life is like: she has to constantly monitor what is going on regarding her Asperger child, thwart anything that might trigger a meltdown, predict the child’s reactions in all situations and respond immediately, look for opportunities to teach the child social behavior without creating a scene, and so on - every minute, every day. So it’s not surprising that she doesn’t feel like sitting down for a cup of tea with you and making small talk!

The truth is that the majority of mothers of Asperger children struggle with depression. While the special services she will receive over the next few years should help in some ways, she will still be the one to deal with the day-to-day difficulties of raising an unusual child. For many mothers, this means ceaseless work, often to the exclusion of their own needs. Their physical, mental and emotional exhaustion can have a profound effect on the health and happiness of the entire family.

For this reason, mothers of Asperger children need those closest to them to give their full, unconditional support, both in words and in action.
"


Honestly reading this made me cry. It is so true. It was like a lightbulb went on in my head- of COURSE that is why I am tired! Of COURSE that is why I struggle with depression! And LOOK!!! It's NOT JUST ME!!!

We recently were talking to a lovely lady who is pregnant with her third child, due next week. In the course of our conversation she told us that her unborn baby is missing half his/her arm from the elbow down. My heart constricted for her. She is concerned about how other people will treat her child... just like I am concerned with how other people treat Aiden. Different issues, same emotions.

As I was thinking about our conversation later I almost wished Aiden's difficulties were physical instead of mental/emotional. Not that either is easy but sometimes I feel like people are too hard on Aiden BECAUSE he LOOKS normal. They question whether or not he has a legitimate reason to act the way he does. If he were in a wheelchair people would not ask him to walk up a flight of stairs or jump rope. They would make concessions for his physical limitations. But since they can't SEE Aiden's limitations they assume he should behave just like all the other kids. And he gets in trouble when he can't.

My second son, Owen, is big for his age. He is tall, he is broad chested, he is just solid. He is almost the same height as Aiden and they have been wearing the same sizes of clothes and shoes for the past 2 years. Owen has ALWAYS been big. When he was two people thought he was four. When he was in preschool people thought he was the oldest kid there when in reality he was the youngest. He has always been the youngest kid in his class (or nearly). But people expect him to do the things an older child would do.

Owen is a pretty good kid and really doesn't cause much trouble but he has learned some fairly undesirable behaviour patterns from his older brother. He looks the same age as Aiden and people often ask if they are twins. They are only 17 months apart but a year and a half is a big difference when you are 5. Sometimes Doug and I have to remind ourselves not to expect more than we should from Owen.

We don't know how to stop Owen from emulating Aiden's behaviour. It's what siblings do. The younger ones copy the older one. How do we communicate to Owen that we don't want him to do what Aiden does? How can it possibly seem fair that we make (necessary) concessions for Aiden that we don't do for Owen?

Owen has spent 5 years watching Aiden throw tantrums, refuse to eat, hit when he is upset, yell at us and at himself etc. Owen has been hit, kicked, teased, chased, taunted, and harassed by Aiden for years. Aiden regularly tries (and often succeeds) to convince Owen that Owen's toys are actually his. Aiden wakes Owen up EVERY SINGLE MORNING.

And yet Owen ADORES Aiden. On the days when Aiden is at school and Owen is home he misses him like crazy. He runs to the door to meet Aiden and says "Aiden will you play with me?" only to be turned down because Aiden has no understanding of emotionally hurting another person. Aiden only cares/understands that he is tired from his long day at school and wants to be on his own for awhile.

Owen is crushed regularly by Aiden.

And sure, Owen has started fighting back but it really doesn't get him anywhere. Why? Because Owen doesn't really WANT to fight Aiden. He just wants to be best friends.

Don't get me wrong, Aiden loves Owen too. They ARE best friends. And often they play beautifully together. But Owen often gets the short end of the stick.

Over the past couple weeks we have been trying to figure out what the boys want for Christmas. Aiden is incredibly easy to buy for because he is obsessed with Lego. He is passionate about Lego. If you give him Lego he will ALWAYS be happy. And he is very concise about what he wants.

Owen is not so easy. Owen has spent the last 5 years being told (by Aiden) what to like, how to play, what it is ok to be/say/do/ etc. If Aiden doesn't like something Owen has he tells him it is stupid. Owen gets hurt by that and then gives up what he likes because he doesn't want Aiden to think he is stupid. The result is that Owen really isn't too sure WHAT he likes.

Owen is a wonderfully compassionate kid. When the World Vision commercials come on he looks at the starving babies in Africa and he asks me why God doesn't give them food. He offers the money in his piggy bank (all 23 cents) to buy food for them. He tells me that they can come to our house and share our food. He WANTS to feed those babies.

Aiden is unfazed by those commercials.

Owen sees Aiden upset and WANTS to make him feel better. Aiden pushes him away.

I try hard not to cry in front of the kids because of COURSE it freaks them out. But yesterday I just couldn't help it. Both boys were concerned but Owen was concerned for HOURS. He would look me straight in the eye to make sure I was ok.

I have these three fake flowers that the boys have given me over the past couple years. I keep them on my desk. This is a conversation I have regularly:

Owen: Mom, can I borrow your flower?

me: yes, you can.

Owen: close your eyes, don't peek!

me: ok

Owen: I have a surprise for you mommy! Open your eyes!

(I open my eyes and he hands me my fake flower)

me: Owen, it's beautiful (sniff non-smelling flower), I LOVE it! (kiss Owen on the forehead). Should I put it in my spot?

Owen: yep! I love you mommy. (gives me huge hug)

Seriously, we have this conversation at least once a day. He is just a sweet little boy.

Aiden is sweet too. He has moments where he tells me he loves me. He is a snuggler sometimes and wants to snuggle on my lap. He often asks me to snuggle on the couch with him. When the mood strikes him it is golden.

I just don't know how to explain to this incredibly compassionate little boy what is "wrong" with his older brother.

Aiden is in a "social skills" class at school. The point of the class is to teach things like taking turns and sharing and listening and dealing with feelings. It is supposed to "promote positive social behaviour".

Last week I had the opportunity to spend lunch hour with Aiden. In the playground Aiden was trying to join in on some running/rough housing games with some of the other kids. It all went ok until one of the boys ran into Aiden. This was a normal part of the game but Aiden didn't get it and turned around and punched the kid. Aiden just does NOT get play fighting. He WANTS to participate but he always ends up hurting someone else or taking something personally etc. When I stopped Aiden from hitting the other kid he immediately wanted to run home and AWAY from there. It takes so little to freak him out.

Aiden was not the only child displaying "undesirable" behaviour. Other kids were pushing, stealing kid's hats, being "naughty"... Aiden is just the loudest and the one who is most likely to run away because it really freaks him out. I don't know how to make the playground safer for his emotional well being.

Anyway, this is really long now... sorry. But that is only the teeniest tiniest part of what has been bogging down my brain lately.

Don't you wish I had just posted another giveaway instead? :)

Comments

Robyn said…
I'm soo SOO glad for you that things are "clicking". That must feel so empowering, and you must feel so relieved knowing it's NOT just you. I've been wondering how yesterday went, but I was going to call you tomorrow to make a date for tea. Wanna? There's no school tomorrow or Friday (yay...), so let me know if you & the boys are up for it! I work tomorrow (and we have hockey, & family pics), but Friday is looking pretty empty. Give me a shout & let me know, I have that yummy Epicure Christmas Tea again!
Shelley said…
No, I am glad you posted this. I think it's something you should talk about. It's obviously a lot for your family to handle, on so many levels, and sometimes it just helps to get things off your chest.

A couple at my church (in their mid to late 40s) have 7 kids. Their oldest as Asperger's. When they first came to the church (with only 5 kids...she was pregnant with the 6th at the time), most people didn't know Sam had Asperger's and they thought him odd and disobedient, etc. When they found out about him, they became accepting. Now when he does/says something because of the Asperger's, they just dismiss it with an, "Oh, that's just Sam." They know it's just his way, and now (I suppose depending on what he does/says), they just accept it and don't bat an eye.
Su-Ann said…
No Tara, I don't just wish you posted another give away. I am glad you posted this. You are an amazing woman, whether you see it or not! You have SO much going on in your world, and yet, you see each child as an individual. You recognize Owen's needs, hurts, etc, as well as Aiden's! Too many times the focus is on the one needing help, and the others are left behind. You and Doug are amazing. God bless you as you advocate for your children, as you love them, raise them, nurture them, and fight for them!
Express your feelings, express your angers, your joys, your sorrows. It lets us know how to pray, and you never know whose life you are touching by being who you are!
Dana Rexrode said…
Tara, I GET IT!!! Seriously. I get it. Justin's issues are different, but they are similar in affect -- temper tantrums, explosions, social interaction problems. I, too, have secretly wished you could "see" emotional problems, so people would be a bit more compassionate. Justin is the youngest instead of the oldest, but I still hear from my other boys that it isn't fair, etc.

So, I can't really do anything from down here in Virginia . . . but please know I understand.

Dana
Krista said…
Tara, we know so many families dealing with similiar issues. Aspergers and other forms of autism, other developmental things... and it is so hard. i can see it in their faces.

Owen and Aiden are blessed to have you for their mommy - you've been the one sounding the alarm about your concerns with Aiden, fighting for what he really needs, and that is exhausting in and of itself.

sending hugs from far away...
Margaret said…
I am glad to hear your honest thoughts. I appreciate you keeping us "up to date" on your family and your struggles.

I am praying for you, friend.

You are a wonderful mom, that is easy to see.
Jinny and Colin said…
Thanks for sharing about your life Tara, I had no idea what life is like for you everyday. You are such a wonderful mom.
Amber said…
YOU are BEAUTIFUL, and WONDERFUL, and SMART, and I'm quite sure you could fit the WHOLE WORLD in your HEART.....it's just that big.
bonobo said…
I am really glad you wrote this. Honestly, I just showed up because of Bloggy Carnival last month, and I stayed temporarily because you have great giveaways! But after reading this post today, I know I'll be following your story more regularly. I thought it was insightful and well-written, and gave me a small but real insight into the way your family functions, and the love you have for your kids.

Keep on keepin' on, Mama.
Robyn said…
Pulled this up, I hope it helps you.
http://www.justmommies.com/boards/index.php?showforum=661
I love hearing about your boys, and your love for them shines through in your blog posts. Thank you for opening up about this aspect of your world.

What a great writeup about the asperger mother. It's so nice to feel normal.
autismfamily said…
Hi Tara - I never got a reply back from my email response to you. Tony Atwood is like the expert on AS. I have written reviews of several books on my autism site.

www.bellaonline.com/site/autismspectrumdisorders

good luck, email is either gmail or yahoo and it is autismfamily
ChristiS said…
No, hon, I'm glad that you did post this. You are in my thoughts and prayers more often than you know. I love ya, and worry about you. I'm glad that you're feeling more like it isn't just 'you'!
Shauna said…
I hear you loud and clear! With a 45 year old Asperger Brother and an 11 year old Asperger Daughter. I totally "get" everything you wrote.
The best thing you can do is talk, talk, talk about Asperger, your son, and the way it affects your family.
We will talk soon. I have to get through this weekend.
Amanda Daybyday said…
Nope...would rather read this than a giveaway any day!
Oh honey. ((hugs)) I can say I've honestly felt these same things this year ever since our little guy was diagnosed with Sensory Processing Disorder. It hurts so much because you want to help them and you just hate to see anyone look at them strangely or mistreat them because of something they can't help. It has really humbled me greatly. I will keep you all in my prayers. Navigating these disorders is emotionally, financially, and physically exhausting. I know this was tough to share, but seriously...so many of us here ARE listening and hear you loud and clear. We will also offer all the support we can when you need it.

Popular Posts