Conversations with kids

Ok, not what you think unfortunately.

I wish I could say that this post was about some cute conversation I had with one of my kids. But it's not. This conversation was a bit tougher.

I made the decision last night to tell both boys about M's situation.

I had two reasons, really. The first is because I think not knowing is causing tension between the boys. The older one will tease M until he is absolutely stressed out. And more and more I hear the same phrase when he gets to that point - "You don't KNOW ME!"

And it breaks my heart a little bit every time.

The other reason is a guy at a client's office. He's sort of a misfit. He's young, and it's his first job. But aside from that awkwardness, there's this obvious social awkwardness as well. For one thing, he doesn't seem to "get" personal space, and drifts in way too close when the conversation interests him. And he doesn't "get" hints. You have to explicitly tell him what you want him to do. And be careful what you tell him because he follows the instructions to a T. And he's sweet so everyone's still good and kind to him. But there are laughs at times. Not in a mean-spirited way, but still. At. Not with....

I don't know if he's an Aspie or not, but he could be. And that could be my son in 10 years.

So last night. I sat my boys down and explained to them as best I could. And it seemed to make sense to the
 older one. Like puzzle pieces coming together. M doesn't quite get it...

But now they know. And I've asked big brother to love, protect and support M now that he knows.

I felt crappy to have to do this. I feel very unsure and very much in doubt over this whole thing. Sometimes I just have dread in the pit of my stomach. Especially when he's "sad".

I know I'm not a bad mom, but I also know I don't have this together. And I feel like I'm failing.

But when I'm really low, and I walk in and see this, it makes my heart feel a whole lot better.

Because I know they know love...

Back to School

The kids head back to a new school term tomorrow, and I head back to a brand new year of work that's full of promise. So why do I feel like this?

We've had a great holiday. I worked most days either from home or from the office. And they spent a lot of time at camp with their friends, so it's not like we were in each others' space all the time.

But I feel like I'm going to miss them terribly. And I can't sleep thinking about it. I miss them already.

I think a really big part of it is that they're not happy to go back. I can't say that I blame them - they had a blast this vacation.

But more than that, I'm wondering if the school they're at is the right one for them. My oldest has a teacher that just doesn't seem to "get" the boys in her charge. When someone in the class is too rambunctious and can't seem to calm down - she keeps the entire class in at recess or lunch. Then complains that the kids are hyper (DUH woman! Let them blow off the steam outdoors!!!)

The younger one seems to be really unhappy just being at school. He's happy being at home in his own business. I haven't been taking him to the therapist since the first few visits after he was diagnosed with Aspergers. I really like his therapist, but something just doesn't seem to fit 100%. I know I need to talk to her, but I just haven't. I don't know how receptive she'll be to the conversation I want to have with her, so I've been avoiding her.

He really doesn't want to be back at that school, but I'm not sure he really wants to be back at ANY school. I am at a loss. I truly don't know what to do for him right now. Over the past few months he's been showing even more behaviours that make him stand out from the other kids.

For one thing, he's really obviously shadowing his words when he speaks. He will say something to you, and when he's finished it's like he begins to mouth it again soundlessly. As if he's double-checking the words or something. Then he's started repeating stuff over and over like a record, which I don't remember him doing before. Not like this. He'll go monotone and just repeat the one phrase over and over again. Like - "That's funny Ha Ha. That's funny Ha Ha. That's funny Ha Ha." Or in the middle of a conversation with a visiting friend, I'll realize he's quietly come to sit behind us and repeat "'House' is on right now. 'House' is on right now. 'House' is on right now." When I snap to it and gather what he's saying and let him know, it's ok I won't be watching House right now because we have company, he mutters "Good!" and disappears.

I'm going to be starting to write again for my Aspergers blog. It's been too long abandoned, and I need to record some of these happenings.

Like this morning when I think my heart broke a little bit, when I realized why he was sometimes reluctant to go to camp with his older brother. Turns out he's now of the age to join the group of boys his brother is a part of. And they are the usual silly slapstick way that 8 and 9 yr olds are. Except my son doesn't understand why they speak the way they do, when they play and put on mock voices and accents and make up words for kicks. So he tries to correct them and tell them that's not the way the words are pronounced. And they tell him to shut up. And they ignore him and leave him out of their play time.

I realize I can't save him from every experience like this. So telling the supervisors what's happening and asking them to sensitize the boys can't be the only answer. I want to be able to teach him to understand that this is all fun and games and perfectly normal. How do I do that? What's the right way???

And what happens in his class where his brother is around to at least give me some insight into what's happening so we can talk to him and help him?

I know he's going to be fine, and others just like him work it out fine. But that doesn't make it any easier on my heart.

They'll both be going back tomorrow, but there will be more than two hearts breaking when I drive away...

Parenting with Dr Asperger

Looking at your crying child and knowing that you are powerless to help. This feeling of utter desolate helplessness. This is the root of Mother Guilt. Because instinctively a parent will give their all to avoid being here.

He is sad. And he doesn't know why. And I can't get to the bottom of it. And I can't make it go away. I feel like I'm failing him.

He desperately needs me, and this time. I don't have the answers.

As I watched him curl next to me in a tight ball sobbing silently, I resolved to do the only thing I know how to do. To work through this the best way I know how, and to document the process. I hope it will somehow hold a clue to helping him. And perhaps it will help another parent somewhere, to know they are not alone.

Our journey starts here: Parenting with Asperger, so named after the pediatrician who recognized it in himself and others, and argued for their place in society.

Hans Aperger was an Austrian pediatrician (1906-1980). He may have himself been an autistic, although the disorder named after him was not popularized until 1981.
"We are convinced, then, that autistic people have their place in the organism of the social community. They fulfil their role well, perhaps better than anyone else could, and we are talking of people who as children had the greatest difficulties and caused untold worries to their care-givers." 

By TwitterIcon.com

Settling down to business

That's the theme of my day today. Settling down to business.

I've got some work deadlines I've set for myself that I need to meet, and I've dedicated today to that.

I've had the kids home for the past 4 days because they had a school-holiday on Friday, and the oldest and youngest were sick yesterday. Everybody's now bundled off somewhere or quietly occupied, so I should be able to have a productive day today.

But before I settle down to work, I owe you an update on how we're settling down to business on the home front. Again, thanks to all you wonderful wonderful fellow bloggers who have sent me links to resources and notes to lift my spirits. The words "they really helped" just do not capture it.

So here's where we are. We had that appointment to see the specialist - the psychologist last Thursday. I did really try to find another way through public healthcare and through the church. But the doors there just didn't seem to be opening. Yet? We'll see. One therapist working through the church asked me "Who what syndrome?", and "What syndrome?", then took my number, and never called back. Needless to say, I'm not feeling a lot of faith there, so I haven't called back either.

The psychologist was awesome. She obviously has a lot of experience dealing with this, and she has a room setup that was like a wonderland to my son. He was SO excited. I had to explain to her that he was not in his usual form. First of all, he was hyper all day, excited to go see the lady who would help us with "why he's so sad". He must have overheard my husband and I talking about it, and came right out and asked me. I wasn't sure how he'd react, but I told him yes anyway, and I think he was actually relieved. Hence hyper-excitement on the day of the appointment.

Anyway, she saw several obvious (to her, not to me) physical signs of sensory disorder right off the bat, like the way he sits, and moves. His speech she felt sounded as though he was translating back to English from another language and she wondered if that was normal. I guess we've gotten used to it, and we don't notice it anymore. She explained so much - like why he always wants to wear long sleeves and long pants, even in this heat! And why he always wears a belt, and things that we always thought were just his quirks. So now we know. He has a sensory disorder, and the suspicion is Aspergers.

She told me she could see where I had done a lot of work with him, and I felt so happy that a professional was basically confirming that I'm not a madwoman. Lol. She has shown me that my willingness to be so flexible with him has allowed him to develop trust and communication skills, but it has also allowed him to remain very rigid. So we're going to work on that.

When she explained to me how his sensory system works, despite the validation she had just given me, I still felt like I had so much staring me in the face that I missed.

• Why he constantly has the remote in his hand when watching TV. He flips to the TV Schedule every 5 mins to check what's coming next, and how much longer. And I would lose my temper and take the remote away. Now I know that he needs to rely on a structure and he needs to know what's next. Slaps forehead. Doh.
• Why when he asks you to confirm something and you explain that's not right, and then he says "I know, I was just joking!". It's a coping mechanism... On Sunday it was a neighbour's birthday. He asked when is your birthday. But what he meant was, what DAY is your birthday. Or how we would ask is, what day is Today. When the neighbour answered, you know today is my birthday. He gave the standard "I know, I was just joking. What day in October is it today?" Oh lil man, I can only imagine how hard these things we take for granted are for you...
• That I'm not going deaf, your hearing really is that sensitive!
• Why when you say something is irritating your skin, it really is. I'm sorry for all those times when I just sent you in the shower, and then if that didn't work left you to suffer through it.
• Why phonetics drove you crazy and you would memorize your words. I'm glad you stuck it out and now you're comfortable in your rules. I'm going to learn how to reach you better to make that journey less stressful for us both.

The list goes on and on. And so do we. We move on.

We need to get him to a speech therapist and occupational therapist next to be assessed. Then we're confirming the diagnosis and charting a course of action. I've caught myself, gotten off the emotional roller-coaster, and am ready for action.

Aside from the work we'll be doing with the therapist, I'm going to start a separate blog to keep as a journal of our journey. Hopefully this will be helpful to other parents who are wondering about their children and Aspergers. There were so many revelations I had once I finally got in touch with other people who have experience with this. I will let you guys know when it's up and running.

Ok before I go, have you heard about Motherhood - the movie starring Uma Thurman as a SAHM blogger? It opens October 23rd in select theaters. Can you do 2 things for me?

1. If you're on Twitter, please follow @Motherhood for updates, giveaways and news. She needs 12 more followers to get to 2000!

2. Check out this write-up on the movie and go see it if it's coming to your city (LA, San Francisco, Chicago, Boston, NY) on October 23rd.

 

By TwitterIcon.com