Who Picks up the Slack for Me?

A dear friend of mine asked me to post this for her as she felt unable to risk posting it herself. Can any of you relate? Can you help? Or even just comment to let her know someone else in this crazy world we live in, gets it.

Image from visualizeus

I recently saw John Elder Robison (author of ‘Look me in the Eyes’ and ‘Be Different’) speak. He was brilliant and inspiring. At the end of the discussion they had a question time and there was a lady in the front row who asked, “I am a wife of someone with Aspergers and my question to you is how does your wife stay married to you?” 

This sounds incredibly shocking doesn’t it? And for a moment I gasped and then I realised that John took no offence to it what so ever. In fact he answered that she did not stay married to him, but he found another wife who did. He answered that for their marriage (the second and current marriage) his wife has a high emotional capacity where his is low and he has the high logic capacity and hers is not as high, so they are a good match. Also that she does not expect things of him that he cannot give, she knows his limitations and they have open communication, she doesn’t get cross at him for things that he ‘should’ know. He expressed regret that he couldn’t help this lady more in his answer and mentioned that he is asked that question often from women all over the world.


I sat there all inspired about how awesome Aspergers is and thought to myself, “yep, that’s so true. Don’t expect things, you need to be specific and ask for them”. Feeling all smug I drove home.


I have a son who was diagnosed with Aspergers nearly 3 years ago... he is 8 now. My husband as a child was diagnosed with ADD but since receiving my sons diagnosis we have figured that perhaps that was wrong and we strongly suspect that he too has Aspergers. I think that the best way to describe the ways in which his ASD (or ADD officially) affect him is that he expects things to be done ‘his’ way. He thinks something and says something and expects that instantly you will understand and agree. There is no grey area, if I have not heard properly or the question is not said explicitly enough for me to understand and I ask for clarification I am met with exasperation! Things are meant to be done a certain way, to do them other ways is met with great frustration.


Rules... not written in stone nor a poster on the wall but rules written in the fabric of his life which we need to comply with. Internal focus, incredibly intrinsic focus. I will stand and listen to a discussion for 10 minutes about something in particular that has happened or of interest...then I start talking and at times he just walks off, or he interrupts or changes the subject. So I stopped talking. Then I am in the wrong for I do not share, I do not discuss things with him.


Questions are asked in statements which come across at times incredibly harshly.”Didn’t you get milk today?” instead of “Did you get milk?” When I point out the different ways these two sentences make me feel I am questioned as to what the difference is? Why should he ask if I got milk when it is obvious I didn’t because there isn’t any there! My thought to that is (it used to be the answer but then the argument following and exasperation at my not understanding his logic and point of view is not worth the time) ‘why even make the statement then if you can see that there is no milk!’


His mother is from the old school of doing absolutely everything for her family. Everything. I admire the loveliness of her home and the way in which she brought them up securely and comfortably with beautiful food on the table each night. I do not admire the fact that her son had developed a preconceived notion that that is the way things should be done for him for the rest of his life (a notion which she told me I had an obligation to do for her son... we haven’t talked much since that day). We married young and despite my voicing the fact that I did not grow up in a house where the woman did everything and therefore would expect him to do things around the house etc, my words obviously fell on deaf ears. Or did not fit his preconceived rules about the role of a wife and mother.


Standing in the kitchen he will say, “just look at this place! It is such a bloody mess!” and then he will turn on his heels and walk out of the room. His plate has in the last year been transported from the table to the bench after dinner (after much nagging to change the before behaviour of simply leaving it there and walking away). I could push and nag to get dishes done, but more times than not the banging and crashing of the plates and cutlery as he does it either smashes one (and it is never his doing, always a cause of the dish or the way I had stacked them) as he expresses his disgust at doing them in much the same way my 6 year old expresses his disgust at packing up his toys! It is not worth the hassle.


The world owes him much. I owe him much and it is my job to make sure that all of our worlds just keep on flowing and ebbing along nice and smoothly. I do all the sports runs and therapy and school runs... I also work. Anything to do with the kids... I do. I am not bitter about this, I love my kids more than anything else and would do anything for them. I love my husband too... but I am not sure how much longer I can be all of their alls.


You see I am diagnosed with depression and have recently had an increase in my meds which has caused a decrease in my coping skills! Clearly there is something in me reacting to them and I am seeing my therapist to discuss it today, hopefully if I change meds I will regain some control... control... which has at times over the last few weeks been completely void in my life. I cannot cope with the day to day. I get through the things that need to be done and then am too exhausted to deal with the things that should be done and well need to be done but if no one is coming over then they can wait.


Dishes, washing, sweeping, vacuuming... housework.


My husband knows of my depression and downward spiral and yet other than trying very hard to regulate himself so that he doesn’t say too many negative things to me he has done little else.


This morning I went to pay for my daughters swimming program through school. The note had been lost under the car seat and we had not paid the deposit for it. She cannot go as a result of this, it is too late. I got to the car and drove off past the school before the tears began to fall. By the time I pulled in the driveway at home I was sobbing. My toddler asked me if I needed to wipe my face and I answered "yes I do honey." My friend is coming here in about an hour and a half to watch my toddler as I go to the therapist and my house is a complete disgrace. I stood at the bench, barely seeing through my tears and feeling like a complete and utter failure and the thought popped into my head...


Who picks up the slack for me when my world is completely falling apart?


That smug version of me, agreeing with John Elder Robison that day and the advice he gave to the wife of a husband with Aspergers, is currently living somewhere else.
Right here, right now I am her best friend, her carbon copy and I am wondering... how do I keep doing this? How do I keep taking the constant negativity, managing meltdowns from all the children and my partner, always trying to do and be everything because it is easier doing that than putting up with the arguments or discussions about it? To leave him feels like a betrayal as he cannot help the way he behaves... but then I think of the therapy I am doing with our son and wonder why it is that he is unwilling to try? If his son can then why can’t he? But to leave feels just as hard as to stay.


Are you married to someone with Aspergers? Are you that lady on that day wondering, how do I stay married in this situation? Do you understand?



on behalf of a friend.

I Had To Have The Sex Talk With My Son And I Lived to Tell About It

I had “The Talk” with my son. We both survived, barely. He is twelve now, and I know what you’re thinking: WHY are you just now having this discussion with him? Do you live under a rock? Don’t you know what kids are capable of getting into these days? Do you want your kid to be a statistic?

Believe me, I get it. But you have to understand…I have tried to have The Talk with my son before this, many times. Each time, he politely rebuffed me.

My son has High-Functioning Autism. It is as the name implies. Some professionals call it Asperger’s Syndrome. It means he has trouble with social cues, reading body language, some processing problems as well as trouble controlling his impulses, like anger. He is easily embarrased, so it didn’t surprise me that he did not want to discuss his burgeoning sexuality with his mother. This is the kid who hides his eyes if I take him with me to mall and we happen to pass the lingerie store. There have been no shortage of attempts on my part to usher him into the ways of the world. He always swore he was not interested.

So when I found that he had been googling, “penis” and “breasts” I figured, protest though he may, it was time. I am a smart woman. I have safe search on, so he didn’t find anything except Wikipedia pages…no trauma. I get that kids, boys in particular, can be curious. I am just thankful that no damage was done! And I am also grateful that I have enough technical savvy to know how to lock down the computers!

So, how do you talk with your son about something you both find highly embarrassing without losing your mind? The answer, it seems, is just do it. Do not make a big deal about it.

Five Ways to Discuss The Subject Without Wanting to Run and Hide

1. Be as matter-of-fact as you can. Lay out the information without a lot of emotion, as though you were tutoring someone who speaks a different language. We are talking autism here. That is, after all, what you are doing.

2. Refrain from idioms, editorializing, and heavy opinion. All of these will be ignored by a kid with autism. He probably won’t get most of them, anyway. It is easy to get “on a roll” and end up losing the kid halfway through the process.

3. Don’t bother asking, “Do you understand?” He probably won’t admit it either way. Just lay out the information as best you can. If you are good at reading your child, you can elaborate if need be.

4. This is a good time to explain society’s views on women, respect, pornography…just try to do it without making the kid feel belittled. Did I like that my son googled body parts? NO. Did I tell him I don’t want him to do it anymore? YES. Did I make him feel like a bad person? Absolutely not. Kids need guidance, and that’s what I gave him.

5. Refrain from what I call “Aesoping” even though it is very satisfying as a parent. This is basically when you say, “I told you so!” Kids learn from their experiences. You can certainly point out the learning, but don’t rub their nose in it. That only serves to make you feel bigger than he is. One-upping a child doesn’t make us better, it makes us bullies. And with a kid with autism, it makes him shut down.

Don’t get the wrong idea. I’m no Pollyanna. It’s not all roses and sunshine around here. I was floored when I found out my son had been …exploring google. It wasn’t easy. But instead of making it about me, and my parenting, and what I am doing right or wrong, I made it about my son. Having a child going through puberty is difficult. I can only hope I have set the groundwork for my son, and that if he does have questions later he can ask instead of looking in all the wrong places for answers.

All in all, it was a painless process for us both. But I have to admit: I am very glad that I only have one son! Somehow, talking to the girls is just so much easier.

Tina has two children on the Spectrum and one who is a quirky teen. Autism Sucks is her brainchild. She also blogs at her personal blog, Send Chocolate Now.

It Definitely Sucks!

For most kids at 15 your world is all about your friends.  Your family sucks.  Your parents don't know anything.  They don't get it.  They don't get you.  High school provides a connection source.  It's the place that you find most of your friends.  You take some classes you hate, some that you love, but your place in the hierarchy of this place can define a great part of your life.  Your experience here, shapes who you become to a degree.

High school can also be a place of shear torture for many kids. Being bullied, feeling left out, ostracized, desperately wanting to fit in, but feeling like you don't.  When you have Aspergers, an extreme deficit in social skills,  and sensory issues, you can multiply that torture X's 10 (at least).

It's near the end of the school year and Red is done, he's ready to check out.  Unfortunately you can't just say, "Sorry people...I'll see you next year, maybe."  You have to get through it.  Suddenly his classes are too loud.  There's too many people.  He hates this teacher and that teacher.

The bottom line is he's tired of feeling like a little gold fish in a huge ocean filled with sharks.
He's tired of swimming against the tide.
He's tired of not having any real friends.
He's tired of being surrounded by people but not being able to connect with any of them.
He's tired of the loudness of the classrooms.
He's sick of the sensory overload.

So he comes home and goes ballistic.
He screams to the top of his lungs at a simple request of taking a shower.
He rages and rants about how horrible his life is.
He becomes more aggressive more angry with those of us who love him.
He is miserable and he wants the rest of us to join the misery party.
He pounds us with scripts and demands to buy him new things that he thinks will make him happy.
He has yet to realize that things don't make you happy.

Everything that is wrong in his life is somehow my fault.
I am the person who works tirelessly to find answers.
I am the one he thinks can make things better for him.
I am the person that he knows loves him unconditionally.
I always forgive him.
This gives him license to treat me like crap.

I keep it moving forward...trying to help him and my younger son, who also has Aspergers.
Therapies, doctors, social skills, medicine, advocating, ARD meetings, IEP's, BIP's, carpools, entertaining
I keep a smile on my face, trying to focus on my blessings.
I pray and see small victories, but can't help but wonder why I'm not seeing any miracles.

To every thing there is a season, and a time to every purpose under heaven -Ecclesiates 3:1

In my head I know this is true, but when your child suffers, it's hard to figure out the purpose of that.  Help me Lord.

Please stop by and visit me @ Confessions of An Aspergers Mom
I also invite you to "Like" my Facebook Community Page

Denial

"To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment."
- Ralph Waldo Emerson

My boy denies Asperger his due. The paperwork claims a mood disorder and that makes it official.

My boy denies Asperger and the existence of God. He can't have faith without any evidence.

My boy denies Asperger and, from this day forward, he identifies with hippies. He has long since outgrown his James Bond tuxedo.

My boy denies Asperger and he doesn't see the point of Harry Potter. A modern day wizard is nonsensical.

My boy denies Asperger and he would prefer not to go on vacation. He doesn't like to be away from home that long.

My boy denies Asperger and he once wrote his own constitution. He used Russia 1906 as a model.

My boy denies Asperger and he gets anxious waiting at doctor's appointments. It's 2:34 now and shouldn't we be back there because our appointment was at 2:30?

My boy denies Asperger and he blogs for the local socialist party. He's 15.

My boy denies Asperger and he is an expert on Japanese fighting fish. He cannot row a boat.

My boy denies Asperger and he charms every teacher. He finds his fellow students to be a tougher crowd.

My boy denies Asperger and loves ethnic food. He doesn't realize his stepfather has taken him to his favorite Ethiopian restaurant for 6 birthdays in a row.

My boy denies Asperger and greatly admires Steve Jobs. He still thinks software should all be shareware.

My boy denies Asperger and believes being grounded is oppression. The dictionary defines it so.

My boy denies Asperger and cannot accept what he cannot change. He's never seen Asperger's syndrome in black and white.

~ I'm HeeWho and I blog at notthatgoodofaperson

It Clicked

It clicked today. Not that it hasn't before. There have been huge steps, then a step back, then forward, then two steps back. That's autism for you.

But today, the pieces fell into place. She's been struggling to learn to read for a while now. Lately, she's been working even harder on her speech homework and reading simple books. Fat cat. Hot dog. She's read Dick and Jane, and recently discovered that Poppy, our Newfoundland, is the perfect reading buddy. She's become more interested in books, and loves to be read to (though she has loved that for a while).

Today, we sat, waiting for my band class to start. I brought along the book I'd been reading aloud. In it, a group of teenage girls learned to read for the first time. The main character, a smaller girl who felt young and unimportant compared to her peers (hm, sound familiar?) was teaching her older sister to read. On a whim, I pointed to a word.

"I bet you know this word." She recognized it as one of her sight words. "She." She knew the next word as well. "Would." Carefully, she sounded out the rest of the words in the sentence. I helped her sound out the harder words, ecstatic. Later that afternoon, she read an entire page out of the book, with help.

We ended up going to the bookstore that evening. I don't think I'll ever forget the look on her face as she looked at the chapter books and realized that she could read the words inside. Suddenly, it wasn't something that her peers could do that she couldn't. It wasn't something to be afraid of, or pretend she didn't want to do. She could read. She skipped back to the car with her book, and once home, ran around the house singing "I can read!" She wanted to read everything: labels on packages, words from the book, even a birthday card that was on my nightstand. She read me an entire book, Leo the Late Bloomer, about a tiger who couldn't read or write when everyone else could. It was all I could do not to cry. She said later that there were words everywhere and now she could read them. She jumped up and down, still singing, and went to read to Poppy.

When she came back in, she chattered rapidly about anything and everything: the characters in the book, how she felt left out with her friends, how she had friends who moved and others who weren't friends anymore, how she wanted to be like me (yeah, I know. No pressure) and how she was so excited she could read. I wished I could hug her and tell her it would be okay, that it wouldn't be hard. All I could do was hug her and tell her I knew exactly how she felt, how even now I didn't feel like my peers (Prom? Meh. Dating? Triple meh.) It surprised me, definitely. She's very quiet and doesn't usually talk about her feelings, let alone deep, dark fears and insecurities. I wish I had the words to make it better. All I can do is be there for her, ready with hugs and a listening ear (since it would probably be frowned upon to try to knock some sense into nine and ten year old girls). Even with everything she told me, I feel like she has a newfound confidence. As we told her, a whole world has been opened up to her. Later, finishing the book, we ran across yet another thing she could relate to.

"I keep thinking about a tale my nurse used to read me about a bird whose wings are pinned to the ground. Have you heard it? In the end, when he finally frees himself, he flies so high he becomes a star. My nurse said the story was about how we all have something that keeps us down."

Today it clicked. And I know it's just the beginning and it doesn't mean everything is perfect, but I'm finally seeing my baby sister fly and I think it's the best feeling in the world.

JBug is the oldest daughter of Tina, and big sister to two (mostly wonderful) siblings.

Photo via Flickr, quote via Princess Academy by Shannon Hale

How Do I Explain It to Her?

She's almost ten, and she doesn't understand. Why is she different? Why does she still love and need her stuffed animals? Why isn't she interested in boys, or Miley Cyrus or Ke$ha (shudder) or makeup or Abercrombie & Fitch? (not that I would buy her clothes there...ever!) Why is it so hard for her to read? Do math? Talk quietly?

Why do her cousins tease her for things she cannot control?

She's almost ten, and she doesn't understand. Why is it so hard for her to control her frustration, disappointment, anger? Why does she clam up when she gets really upset? Why do her words fail her? Why does she see a speech therapist, reading tutor and feel so "little" (her words,not mine).

She wants to be a big kid. She wants to do the things they do. Sleepovers, going to the movies with friends. After all, she's almost ten. She watches Nickelodeon and the Disney Channel, and though I explain until I am blue, blue, blue in the face that those kids are fictional, their life is not reality, she still aches. For what she doesn't have. Maybe won't ever have.

She's small. She still wears dresses almost always, and has since she was a toddler. It's just what she likes. But she wants to be older, and look her age. She needs help to brush her hair, hates to take a bath. Her self-care skills still need...coaxing.

She's almost ten, and she doesn't understand. Why autism? Why her?

I can't explain it to her. I wish I could. I am in my forties.

And I still don't understand.

Tina blogs here, and at Send Chocolate Now. Autism Sucks is her brainchild. Want to write? email her! autismsucksblog, just add gmail.com

My Autism Mirror

It is easy to list the things that really suck about autism.

Even parents who have no experience caring for disabled children could guess the types of things I would put at the top of the list -- if they tried, for just a moment, to picture their own children struggling with an illness or disability.

They would wonder what it must be like to worry about the future and to grieve the inability to communicate with my son. They would try to imagine what it must be like to bury dreams and replace those dreams with uncertainties that literally can drive a parent mad.

But here is one of the worst things about autism -- and similar disabilities -- that only the veteran special-needs-parents will "get."

After autism slaps you around and kicks you in the ribs -- by forcing you to deal with the reality of what is "wrong" with your child -- it then does something even more painful.

It puts a mirror in your path.

A great big mirror.

And in that mirror, you see not only the mistakes you make as a parent -- mistakes you are destined to repeat, even as you hate yourself for doing so -- but you also see the demons within yourself.

You see how much you grieve for yourself, as a parent and as an individual, even though it is your child who has really gotten the raw deal in life.

Score one in the selfishness department.

You see how you get so bogged down in the day-to-day of coping that you never manage to do the things you would like to do -- for your disabled child, for your other child, for your other loved ones, for yourself.

Score one in the unorganized, underachieving departments.

You see how much you wish things had been different. You look away from soccer fields and talent shows. You shut out the conversations of parents at events for your "other" child -- where nobody knows what it is like to wish that your son could just be "normal."

Score one in the jealousy and pity-party departments.

You see how sometimes you actually are angry at your child, even though it is the autism -- and not the child -- that drives the anger.

You feel your frustration rising when he stims -- because you wish he'd be doing anything, ANYTHING, else -- as long as it was something normal. (And, yep, I am not even going to put the word in quotes because, let's face it, I love him as he is but still wish he could just be normal, whatever the heck that means.)

You lose your temper when he strikes out at you, even though you know that if the tables were turned, and you were the one completely unable to talk, you would not face the world with one-tenth his energy and joy.

Score one in the bad-parent-who-loses-her-temper-and-does-not-deal-with-her-son's-disability-with-the-kind-of-patience-a-good-mom-would-have department.

The autism mirror never goes away and, man, does it shine a bright light on all your warts.

No matter where you turn, your mirror goes with you.

I sometimes feel like I can hardly function after I look in my mirror. I despise myself for everything I have not done, and for everything I cannot do.

But I know I am not the only one. And even though I cannot always see the parents walking with me step-for-step, they are out there.

A dad whose blog I just discovered tells it like it is:

Unlike the tales that Hollywood likes to tell, there are no saints or sinners when it comes to raising an atypical child. There are people that strap in, buckle up, and get the job done, and there are those that don't. There are no 'Saints' in this house. There have been times when either one of us wanted to strangle him. (Luckily for him it's never both of us at the same time). Handicapped children aren't intrinsically wonderful, beautiful, or even very much fun to be around. They're love-sponges that soak up all the love you can give them. And by that, show us that we have ever so much more love to give than we ever even knew we had. 'Mothers' or 'Fathers' don't always understand, but moms and dads do. -- The Missing Piece

Amen.

I am the mom to two beautiful kids, and I blog at fruitypebblesfordinner.blogspot.com

The Guilt of Good

I haven't posted here in a long time. It is because I feel guilty posting when things are good. They are. Good, really good. He is happy, he is confident. The powerful pull of personal growth has changed from a puberty monstrosity to a pleasing maturity. Was it the increase in fish oil capsules (his idea)? Was it the stepping up as we battled the system with his Nanna? Was it the loss of his Nanna? I do not know.

I think all those years of therapy and work may have had something to do with it. I think he is growing up. I think he is happy in his own skin.

I feel guilty posting of this when so many others are struggling. Then I remember. This is not wrong, it is not boasting, it is hope.

Things do change. Sometimes for the better. Usually when you least expect it.

also blogs at Meaninless Meandering from a Madmother

The undiagnosed Aspie one....

We walked into the paedeatricians office that first time and sat down to discuss our son. The school had told us, "we don't acknowledge the school psychologists assessment of Aspergers as true until he also sees a Paed for an official diagnoses". 'How odd' we thought, but finally we had found one. He looked over the tests, he asked some questions, he diagnosed him there and then.

Aspergers Syndrome.

"Has anyone else in the family been diagnosed?" the Paed asked.

"Pardon?", we replied still gobsmacked by the affirmative of a minute ago and puzzled as to this new question presented to us.

"Does anyone in the family have Autism or Aspergers? is there a family history?"

"Um, no...not that we know of. Not diagnosed" we replied, puzzled as to where this was going.

"No-one with any strange characteristics etc?" the Paed continued.

"nope, not that we can think of" we replied as the conversation then turned in another direction.

That was over a year ago. A small, non-consequential part of a larger conversation that should have been lost in the fuzzy parts on the edge of my memories as being useless knowledge to keep but instead lodged itself there in the 'important things to remember' part of my brain.

As the year progressed, as I learnt more about Aspergers and how to help my son that one little memory would continue to pop up over and over again. Is it heriditary? I don't believe so. Is it likely that someone else has Aspergers in the family? it is a probable possibility.

Who?

Day to day life is so hectic that I find chasing after my children and dealing with my Aspie sons therapies that my life is full to the brim. Perhaps I don't spend enough attention, perhaps I missed all the signs, but then there was one family member who began to jump up and sit in the chair right next to that little question posed in my memory oh so long ago as a definite possibility of having Aspergers too.

We talked about it, we thought about maybe getting an official diagnoses, something which has not occured, something which I cannot push on that person. As my sons therapies go on, as my patience wears thinner, I find my tolerance wears even thinner!

The puzzle pieces they began to click together and I wonder. Can you say that someone has Aspergers even if they do not have a diagnosis? is it real only when you have that piece of paper that says it's so? I know this is something that has been debated over a long time by others before me and within the Autism community.

This other person, there is no doubt has Aspergers. He has the same traits as my son. He believes everything that happens is because of or a result of something he has done. He is incredibly intrinsical and has many of the traits. He is a living, breathing, bigger version of my son, almost a direct carbon copy. His story is not mine to tell.

Why even mention it then? because I am struggling to cope with all that is coming at me from both ends of the spectrum here right now. Spending hundreds on therapies for my son of which he works hard at, only to see that the bigger one continues to display those behaviours we are attempting to change in my son, with no care to change them himself. As that bigger one is someone my son upholds as an idol, I am fighting a battle to prove just why he needs to change those behaviours himself. Being spoken to with a voice of contempt and disgust when things are not going the way they deem it to be, tag teaming their times to do this, one after the other. Angry outbursts, expletives thrown out at several intervals when frustrations brew over, when they don't know how to handle or what to do with their emotions.

I am their safe place, their island on which to stand and let it all out because they believe that it is only with me they can do this. That I get it, that I wont leave them if they do. They put their mask on 'out there' and they conform 'out there' but on my island they don't need to. I can handle one....but two is often too much. I am human, it is breaking me.

So what do I do? how can I help someone who doesn't believe they need it, but so desperately wants life to continue the way it always has despite the fact that it just cannot? How? how? how? Yes, right here where I am...Aspergers can definitely definitely SUCK! :(