Autism and family

Answering A Question

2010-09-02T17:34:00.001-04:00

I got a comment on my blog. I was going to answer it in the comments section, but I figured it's a question others may have. The question concerned my son's very successful birthday party. I'll copy the question here, and attempt to answer it. Keep in mind, I'm not a doctor, I'm no expert, I'm just a mom.

"How wonderful! Yay for AJ and his friends!

Will you elaborate more for those of us who are still working/struggling on the social development front right along with you? What things made the biggest differences in his gaining friends? Are his peers neurotypical or are some of them also Aspies? How had he met them? Has his own attitude about being around people changed, and if so, did it happen before he began to make friends (thus inspiring him to work at it)?

Thank you for sharing your success!"

AJ is not particularly fond of people, but these home school kids are incredible. They keep trying with him. That was the most important piece. These kids are used to being around all different types/ages of people. They're used to AJ, and their parents have educated themselves and their kids about autism. Also, after a LOT of therapy, AJ is recovering from all that happened to him in public school. He is now getting brave enough to try to make friends. He is still VERY quirky, and a very "in your face" kind of kid. But, he has found kids that he kinda likes, and they like him too.

So, for us, the "secret" was home school. It was introducing him to kids that would accept him, and keep trying with him. Even when he wasn't ready, even when he wasn't nice to them. It was finding parents who would learn about autism, and teach their kids about why AJ was different (not less). AJ says that it was easier to make friends with hs because it was a smaller group, and not so overwhelming. It was more on his terms, not for 20 minutes during recess. It was the "perfect storm". And it was that AJ was willing to keep trying, to keep giving chances to the world, and to never accept "no" as an answer.

We've been lucky to find this group, and we've worked damn hard to create this luck. I wish I had a better answer. I wish I had the secret to help all our kids make friends. I wish I knew that this "friendly phase" would even continue for AJ. And I wish you luck making/helping it happen for yours.

BTW, some of AJ's friends are NT (most actually), and some of them are on the spectrum.

Thanks for the question. I love knowing that people are reading my blog. If there are more of you out there, drop me a line. I'm sure there's lots of you out there that would have a better answer to this question to help this mom.

Double Digits

2010-08-23T11:01:00.000-04:00

AJ turned 10 this year. Such a huge milestone, and so much progress has been made. But, at his birthday party, we saw the evidence of the most important progress of all - he has friends!!

For his 1st birthday, we invited all our friends, and the kids from the parent/baby group. Everyone came, the babies cried, slept, and drooled. A fun time was had by all.

For his 2nd birthday, we invited all our friends, and the kids from the parent/baby group. Almost everyone came. The toddlers babbled, pulled each others hair, and drooled. A fun time was had by all.

For his 3rd birthday, we invited some friends, and the kids from the parent/baby group. One kid came. They had fun. We were sad.

For his 4th birthday, we invited some friends, and the kids from pre-school. One kid came. They played, but not together. They had fun. We were sad.

For his 5th - 9th birthday, we just invited friends and relatives. He didn't want to invite other kids - he kinda gave up. He said he didn't care. We did, and I think he did too.

Then we started home schooling. He made friends. He was successful in socializing. This year, we had to trim the list. There were TOO MANY kids on it. We wound up inviting 7 kids. They ALL came. Everyone had fun. We all had lunch, opened gifts, played outside, had cake. It was AWESOME!!

Were there bumps in the road? Absolutely. Did AJ have any meltdowns? Absolutely. Did we have the best party ever? Absolutely!

Kudos to our boy, our friends, and their fantastic kids!

Tween-ville, here we come!

Free To Be... You And Me

2010-08-22T19:36:00.000-04:00

Ok, this post has nothing to do with autism, nothing to do with AJ, and nothing to do with parenting. But this blog is called Autism and Family - and that includes me. This is just about me. And it's super funny - maybe just to me, though. And, it has blaspheming. Fair warning...

So, when I'm not being a home schooling mom, or boring people by endlessly blatering on about autism, I am a small business owner. I'm a jewelry designer. Go ahead, check out my website (http://www.camcreations.net/), I know you want to. I'll wait....

Ok, if you're done being impressed, I'll go on.

Today, I did a show called Pagan Pride. I'm not really a Pagan, but, I'm a "live and let live" kinda gal. So, I went. And it rained...torrentially. At an outdoor show. My tent sprung a leak. Lovely. So, I'm setting up in the rain (why didn't I go home? I have no idea...).

By the time I stepped in the 400th puddle of the day (at 7:30am) I mumbled, under my breath, "Jesus Christ".

A guy I didn't know behind me said, "Dude, wrong Diety." I really, really didn't laugh out loud. It was hard.

Divine intervention must have hit, because my response was "Hey man, diversity and tolerance are the cornerstones of understanding." in my best stoned hippy voice. Divine. Intervention.

His response: "Deep man, really deep."

I'm still giggling. He's still stoned (allegedly).

I OWE YOU A CALL

2010-08-20T09:13:00.000-04:00

You know when you talk to a friend, and before you hang up you say, "I'll call you next week"? But, next week, your kid has a meltdown, or you're sick, or your car breaks down, or, more likely, all of the above. So you forget to call. Then, you remember, but it's really late, so you decide to call the next day, but you forget again. So, it's now been a month. Now you feel really guilty, and you decide to call next week. But, by next week, you feel even guiltier?

Yeah, so I was supposed to call (errrr... write) a loooooonnnnnnnggggg time ago, but crap happens (see above), and then guilt happens, and then, well, it's been a while.

So, I am working up some blogs in my head, and I WILL call you (errr.... write) soon. Really..... I promise....

Greetings

2010-04-01T18:49:00.000-04:00

If you've read this blog for any length of time, you are aware that AJ is not a fan of people. It's not that he doesn't know how to socialize (he doesn't), it's also that he doesn't like people, and doesn't want to socialize. He'd prefer to just stay home and speak to us. He'd be happy living on a farm, 20 miles from the nearest house. Seriously. He says that all the time.

Today, we went to the park with some friends. I was thrilled to be out of the house, and be outside. We live in New England, and the flood waters have been B-A-D around here. We needed to be outside!! On the other hand, there would be PEOPLE around, so anything could happen, and of course, it did.

When we first got there, there were a couple of kids already playing. AJ was working hard at avoiding them. He actually came up to me and said:

"I'm trying hard to avoid these kids, Mama! I'm pretty good at it."

One of the little boys was chasing AJ around. He was really trying to get AJ's attention. It looked to me that this kid was on the spectrum. I finally got AJ to stop, and see what this little boy wanted.

He said to AJ, "Can I play with you? Can we be friends?"

I could see how hard this was for this boy. I could see how he struggled to get that out. And, I knew what was going to happen. I could see it on AJ's face.

AJ said, "I'd prefer to play alone."

Then AJ ran away. The little boy was stunned - and sad. I was soooo torn.

I want to respect what AJ needs. I want him to be able to set his own boundaries, and say what he wants and needs. And he did that. Almost politely. But, my heart broke for that other little boy. I know that I can't take care of everyone's kids. I know that I can't advocate for the world, and need to concentrate on my family, but it was so hard not to get frustrated with AJ. It was so hard to stay out of this encounter, and let AJ do what he needed to do.

I still don't know if I did the right thing by staying out of that encounter. I'm not sure I could have said or done anything anyway. I can't force AJ to play with kids if he doesn't want to. I can't make him care about being social. It's hard for me to watch, but it's just part of AJ.

It's really my problem, not his. I have to learn not to judge his world through my lens. I need to learn that what makes me happy is not necessarily what makes him happy. I need to let him find his own way, and just support whatever that is. I guess I have to learn to deal with it and just move on. I can't fix the world, but I can take care of my little guy. I guess that's just part of being a mom. No one ever said it would be easy. But no one ever said it would be this hard, either.

Breakfast In Bed (kinda)

2010-03-29T15:20:00.000-04:00

I have a very structured schedule. Not just for AJ, but for cleaning the house, and doing the laundry. If I get off the schedule, no one is happy, because nothing is done. I have the schedule posted. It makes AJ happy to know when his laundry is being done, and what level I’m cleaning (we have a 3-story house - AJ calls them “levels“).

Sometimes I get behind in my schedule, and I have to make up time. Last week I had one of those days, and I had everyone’s laundry piled up. I was trying to catch up while AJ was eating breakfast, and before school and the rest of the day got into full swing.

A:J: “Mama, you have to come downstairs!”

Uh-oh. I had heard some banging around down there, but AJ is usually pretty noisy when he makes his breakfast (yep, he makes his own breakfast, and usually his own lunch!)

Me: (really trying to sound calm) “What’s up, buddy?”

AJ: “Close your eyes, and I’ll lead you downstairs!”

Hmmm….this is getting suspicious…

AJ: “Come on Mama, I don’t have all day!!”

Me: “OK, lead me down.”

AJ: “Open your eyes!!”

There, sitting in front of me is a perfectly set table, with my favorite breakfast on it!! He made me breakfast - by himself.

Me: “Honey - that’s awesome!! Why did you make me breakfast??”

AJ: “Well, I noticed you were really busy with laundry, and I figured you could use a break.”

What 9-year old does that??

And that was the best breakfast. Ever.

Kids Need Encouragment

2010-03-22T16:59:00.000-04:00

Last month, AJ and I went to a Hallmark store to buy some birthday cards for my mom. We looked around and finally found some we both like. AJ was in a good mood and feeling very cuddly, so I was getting lots of hugs and "I love you"'s. It was a good day.

The cashier was giving us "the look" as we were waiting in line. Even on a "good" day, AJ is kind of loud and disruptive. I gave her my best smile, and kept my attention focused on my munchkin. When we got up to pay, she quietly told me that they were having a sale on some cards for kids. I told her that we didn't need any more cards, and would just like to pay for the ones we had. She insisted that I should look at these cards, because they were cards to "encourage kids". I again told her that we were all set. She then said: "You should really look at those cards. Kids need encouragement to behave properly".

I was about to become less kind and patient, but AJ took care of that for me. He looked right at her, and said, in his sweetest voice possible:

"I don't need more encouragement than I already get. I love you, Mama!"

Sometimes, he advocates for himself better than I ever could. I love you right back, AJ!

Only The Good Ones

2010-03-16T18:23:00.000-04:00

A few weeks ago, our family went out to dinner. We all decided on Uno’s. AJ likes Uno’s, but it’s loud there, so it’s a difficult place for him to be. AJ was overwhelmed the minute we walked in, but wanted to stay.

He had a hard time picking something from the menu - he always gets the same thing, but he has to look through the whole menu each time. He picked what he always gets.

When the server comes, AJ won’t look at her, or place his order. We do it for him. He demands a drink, won’t say thank you or please, or speak politely. He’s having a hard time, and can’t deal. He’s speaking loudly, and people are staring. We are used to this, and are trying to get him to stay calm, and try to focus on us, and not the noise. It’s not working but we’re trying.

Eventually, he calms down, and eats his dinner. He’s speaking as quietly as possible to him (not very quietly - but it IS a family restaurant, so it’s kind of OK. People have been “ starin’ and glarin’ ” but, we’re used to that. We don’t like it, but we’re used to it.

A server comes over to the table behind us - not our server. She is talking to the family there about how cute their kids are. She says that she loves kids - but only the good ones. I don’t know if we were intended to hear that, or if it was just an innocent off the cuff comment. Either way, it didn’t feel good. I knew that, for that night, to lots of the people there, AJ was not among “the good ones”. I could see the way the customers and staff were looking our family.

Autism is an invisible disability. It affects his behavior, but the roots are not behavioral. Autism can not be punished out of him. Autism is not responsive to discipline. He’s trying his best. He has to try so hard, and things that seem easy to other kids are exceedingly difficult to him. The world is a very noisy, overwhelming place to him, and there’s a lot of stress. I wish people could understand how well he does, considering what an assault on his system the world is.

Trust me - he’s not only one of the “good ones”, he’s the best. If they knew what we know - they’d see that too.

The Farm - Part Two (or, “sometimes the Olympics can make you cry”)

2010-03-12T19:20:00.000-05:00

So, we finally got to the farm. AJ is already agitated because we can see that everyone is already there. There is nowhere to park, and he is panicking. We finally find a place to park, and run over to everyone else.

OH, NO!! There is a wild turkey. Walking around. Next. To. People. And the kids are TOUCHING it. I assure AJ that he doesn’t have to touch it. He can’t stop staring at it though. He can’t believe that people are actually touching it - on purpose. He is absolutely repulsed and overwhelmed. I’m hoping they start with the actual tour soon, because I don’t know how much more AJ can take. We just drove for over 45 minutes - I need to not get back in the car and go home now.

We finally get started. We first start in the “woods”. AJ is disappointed that it’s not a hike, but a very brief walk into the wooded area. The guide is telling us about how they tap the trees, and boil off the water to get maple sugar. AJ can’t stop staring at the turkey that has followed us over. Then the guide offers us some maple sugar. He puts the block on a tree stump to cut it. AJ thinks that is totally disgusting and unhygienic, which he announces loudly. Needless to say - he doesn’t try the sugar. I did, though. YUMMY!!

The guide then lets some of the kids try using the saw they use to make kindling. AJ believes that to be too dangerous, which he also announces loudly. Luckily, most of the group is watching the guide and their kids, so not many notice any of this.

Then we go inside to watch the guide make johnnycakes. AJ thought that this was interesting - but that the room was TOO HOT, which, you guessed it - he announced loudly. Then the guide added lard. Not good!! There was a promise to make vegetarian ones later, so a long speech on animal ethics was avoided!! :-)

During all of this, one of the kids next to me noticed my Olympic mittens. He started talking to me about the Olympics. I asked him about his favorite athlete - who was Apolo Ohno. We talked about when Apolo was disqualified, and whether or not it was fair. We discussed the figure skaters, and if we thought the luge was a safe sport . We had a conversation. It had a beginning, a middle, and an end. An actual end.

AND. IT. BROKE. MY. HEART. I so want to have a conversation with AJ. I want to look in his big blue eyes and discuss stuff. Important stuff, stupid stuff. Anything. Not a monologue, not just me saying “did you hear me?. I can’t tell because you didn’t respond.” Just a conversation. I know I should be grateful that he’s verbal - so many kids aren’t. And I am grateful. Extremely. But I just want more, I guess. And, I’m not going to quit trying to get it. Because my job is to keep trying for him, right???

But, there is one conversation we always have, every night.

AJ: “I love you, Mama.”

Me: “I love you, too, AJ”

AJ: “I love you more!”

Me: “I love you more!”

And that’s why I’m not going to quit trying.

The Farm - Part One (or, “are you sure?”)

2010-03-11T20:00:00.000-05:00

Last week, AJ and I were going to a field trip at a farm that makes maple sugar. We were running late (which I hate more than anything). We’d had a rough morning. AJ wouldn’t get in the shower. Once he was in the shower, he wouldn’t wash his hair. Once he washed his hair, he wouldn’t get out. And on and on until we got in the car. Not a great start.

Once we got in the car, the “conversation” started.

AJ: But, Mama, what will the farm be like? Will it be outside or inside? Will it be cold? Will there be lots of people there? Will the sugar be vegetarian? Will there be animals? I saw a farm with animals once. On my gameboy, there’s a game with animals, but I don’t like it. I like robots. Did you know that there’s a robot that was programmed to show emotion?

I don’t actually need to answer any of these questions. He’s just talking to talk. I can tell because he started the sentence with “but”. That usually indicates that an off-topic monologue is about to start. I have to listen, though, because you never know.

He goes on with his “conversation” for almost the 45 minute drive. The content varies very little. He mostly repeats the sentences in different order or slightly rephrased. It’s just AJ, and I’m mostly used to it.

Then, a question that he wants answered comes out. I know it needs an answer, because it’s a question he always asks on the way to someplace new.

AJ: “Mama, what if it’s too loud, or if there are too many kids? What is going to happen, EXACTLY?”

Mama: “I don’t know, baby, but I know it will be fine.”

AJ: “Are you sure?”

Mama: “I’m sure.”

AJ: “Are you REALLY sure?”

Mama: “100% sure.”

AJ: “How?”

Mama: “Because it always is. And, even if it’s not, we always handle it together.”

AJ: “Oh, yeah, that’s right.”

And, so it goes…

Dear AJ

2009-11-14T21:23:00.000-05:00

Starbucks responded!!!!

Here's what they said:

Hello,

Thank you for filling out a comment card when you came to our store on October 16th.

I want to say that I'm sorry the music was too loud and we haven't put up signs before we change things in our stores.

Your suggestions were great! What I'm going to do is send them to the store managers so that we can try to change things.

If you are ever in a store and the music is too loud, or anything else that we can change so that we can make the store better for you please ask the staff working.

We are happy to help!

Thank you for helping us improve what we do.

If you have any more questions I can help you with please let me know.

Warm wishes,
Monica L.
Customer Relations

They actually included contact information, too. I'm going to show it to AJ tomorrow. I'm pretty impressed that they responded, in something other than a form letter. We'll see if they do the things that they said, but I'm impressed anyway. And, AJ can get to see that constructive criticism is more efficient than whining and complaining.

Two thumbs up, Starbucks!!

Dear Starbucks

2009-11-09T15:13:00.000-05:00

AJ HATES Starbucks. Not the coffee - that he really likes (black, no sugar, thank you very much). It’s the actual buildings. They are too loud, too quiet, too bright, too dark, too small, too large, just too. He’ll walk in there in a perfectly good move, and come out 10 minutes later like a hungry black bear that was woken up during hibernation. Just not pretty.

So, he decided to do something about it. Boycotting wasn’t working - cause Mama and Mamu LOVE Starbucks. And we like to go there, and sit and talk - you know - with actual adults. So, AJ found comments cards. He decided that they were going to get his comments. God help them!!

Here’s what he wrote. Word for word. I didn’t change a thing. Swear it. This is actually how he talks…

To Whom It May Concern,

I am a 9-year old kid with autism, which is a neurological issue that changes the way I see the world. Kids (and adults) with autism also may not be able to process/compute too much noise, etc, or changes. But some changes are good. For example, if the music was quieter, I could keep it together longer, or if there were “coming soon” signs before an appearance change. These changes wouldn’t just be for me, but for autistic people all over the world.

Signed,
Kid Who Wants Change

Let’s see if we get any responses from Starbucks. I think it’s a pretty good letter, and I like that he is doing something other than complaining.

Pretty cool.

Before 9AM

2009-11-05T14:01:00.000-05:00

OK, pity party is over. I want to thank Ivy from Into The Wind (great blog - check it out), for her very kind comments.

Now, for something completely different - OK, not completely... Still whining, but in a more light hearted way. Here goes:

Here's what I do before 9AM on most mornings. Wonder why I'm exhausted all the time??

1. Get up (after 2 hours sleep)

2. Work Out

3. Help AJ Meditate

4. Finish Our Laundry

5. Start AJ Laundry

6. Take Shower

7. Get Ready

8. Help AJ Finish Getting Ready

9. Make AJ Breakfast

10. Make My Breakfast

11. Eat My Breakfast

12. Encourage AJ To Eat His Breakfast

13. Make My Lunch

14. Make AJ Lunch

15. Start Dinner

16. Put Dry Dishes Away

17. Wash Breakfast Dishes

18. Take Trash Out

19. Kill “Bug” That’s Making AJ Freak Out (it’s a dust bunny)

20. Look Up Directions to whereever we are going today

21. Print Out Directions

22. Get AJ To Put His Shoes On

23. Put My Shoes On

24. Type This List

25. GO CRAZY!!!!!!!!

And that's before 9. After we come home from said field trip, there is still our standarad home school curriculum, lunch, playing, more laundry, more cleaning, getting dinner started...

I need a nap!!

WHAT ABOUT THE OTHER TIMES?

2009-10-29T11:08:00.000-04:00

I usually blog about the cool stuff that AJ does - stuff that’s funny or cute or touching. But what about the other stuff?

What about when it’s raw and painful?

What about when it’s just ugly? Does anyone want to hear about that?

What if a little boy walks up to AJ and says “Do you want to be on my team?” and AJ screams in his face “NO!”, and the little boy cries?

What if AJ says “Yeah, I know I made you cry, but I don’t feel bad about it?”

What if AJ hits me and laughs?

What if I cry and AJ’s response is “Will you shut up, I’m trying to think?”

What if AJ spends an entire day hitting, screaming, and making fun of me?

What if I completely lose my cool and scream back at him?

What if it all gets to be too much and I consider residential placement because he’s getting so violent?

What if the only thing I want for my birthday is to be alone, and I can’t get it?

What if the bad days outnumber the good?

What if AJ runs away in a corn maze and I can’t find him for what seems like forever, and when I do, he runs away again?

What if this is the new normal?

Just a Little Funny

2009-10-26T14:18:00.000-04:00

If you are easily offended by blasphemy, stop reading now!!

OK, you're still here. If you get offended, remember, you were warned...

When I get annoyed, sometimes I blaspheme. Just minor. I say "JESUS!!", but I say it so that it sounds like "Hey-Zeus". I don't know why - I just do...

So this morning, I was carrying something heavy down the stairs, and "hey-zeussing" all the way down. AJ was down there waiting for me. Here's what he said:

"Mama, why do you keep calling me 'Zeus'?" (You get it right?? HEY ZEUS)

Needless to say, I laughed so hard that I now need a new tool box. I will not be explaining to ANYONE what happened to the current one.

Also this morning, AJ and I were working out to an "Arms & Abs" video. What?!? It's part of the P.E. curriculum. Anyway, the guy in the video kept talking about his "abdominals", and how we could have fantastic abdominals just like him. AJ's take on this? You asked for it:

"Mama, why does he want us to have 'fantastic dominoes'?"

See, this is why I never get anything done. I keep hurting myself laughing too hard!!

We Must Be Doing Something Right

2009-10-16T15:25:00.000-04:00

AJ was watching Penguins of Madagascar. Lisa and I were talking about some friends of ours that are going through a difficult time. I commented to Lisa that many of our friends had difficult childhoods, and some of them were horrific.

AJ: "What's a bad childhood, Mama?"

What - he's listening??? Crap!!

Me: "Well, some kids grow up with parents who don't always do the right thing for them."

There, that should do it.

AJ: "What do they do?"

Did I really think that would work - silly Mama!!

Lisa: "Some parents don't give enough hugs, or say 'I love you' enough."

Cindy: (getting emotional) "And those kids grow up to be adults who need a lot of love - they need people to tell them they are good people - that they deserve love."

I may have babbled on and on, and on, and on but for brevity sake, let's pretend I was concise...

Suddenly, AJ is giving me the tightest hug.

Me: "Thanks, AJ. What was that for??"

AJ: (as he's tackling Lisa with a giant hug) "That's for being great parents!"

Go ahead - tell me you're not crying a little bit!! Gotta love this kid.

Take That, Economy

2009-09-24T18:04:00.000-04:00

I was driving around with my son talking about the economy. What??? Doesn’t everyone discuss the economy with their 9 year old?? OK, so we were. Whatever - don’t judge. J

He wanted to know if the economy was getting better. I was telling him about leading economic indicators, and all that kind of information. You know us home schoolers, everything is a teachable moment. Then we started talking about all the construction we noticed as we were driving, with people fixing up their houses, painting and doing repairs. I told him that people were fixing and maintaining their homes, because they couldn’t afford new ones.

He said: “I think this is Nature’s way of teaching people that they should be happy with what they have and not to always want new things that they don’t need”.

I was so proud. My son is so clever, so insightful. I’m such a great mom, I raised him so well, I taught him such good values, I...

My thoughts are interrupted by the following:

AJ: “After the dentist, if I do a good job, can we go to the toy store?”

What??? Sometimes bribing is good parenting. Sometimes.... OK, never mind...

Me: “But, AJ, didn’t you say that Nature was trying to teach us to be happy with what we had?”

AJ: “Yeah, but I didn’t say it was going to work!”

Got me on that one!

Keep The Cold Germs Away From Us!!

2009-09-23T13:01:00.002-04:00

Last night, AJ came into our room at 10:00. That’s not unusual. But, he was upset. Normally, at 10:00, he wants to tell us all about his new invention, or something like that. But, last night,:

Me: “AJ, what do you need?”

AJ: “I need to be close to someone.”

I sat up and opened my arms. He knows that means he can get up on the bed, and get hugs - if he wants them. He did.

Me: “Are you OK?”

AJ: “No.”

Uh-oh. One word answers. That does not bode well. Something is definitely bothering him.

Me: “Can you use words to tell me what’s wrong?”

AJ: “Just need to be close.”

OK, Question and answer time. It's the only way I'm going figure this one out.

Me: “Are you scared?”

AJ: “No.”

OK, no monsters. Move on.

Me: “Are you sad?”

AJ: (starting to cry) “Yes.”

Tears. This could mean anything. We don't see tears alot. So it's not good. But, we might be able to figure this out. I’ve been sick for a week. Nothing too bad, a cold, fever, blah, blah. Not even worth a doctor’s visit. But, I’m guessing he’s worried about that.

Me: “Because I’m sick?”

AJ: “Yes.”

Time for a shot in the dark.

Me: “Are you worried that I won’t be around to take care of you?”

AJ: “Yes”

Me: “Like Grandpa?”

His grandfather died last year, and he’s still not completely over it.

AJ: (really crying) “Yes”

OK, now I’m crying too. He really misses his grandfather. He’s still processing it, but soooo slowly. And, it was the first time he really figured out that parents can die. It’s bad enough to him that most people don’t always live with their parents forever, but the fact that parents could actually die - it’s too much for him. And, then I got sick. I’ve probably been whining about it too much, without realizing how it was affecting him. And, before bed, we told him that I would be going to the doctor’s office, and Mamu would be home to take care of him. We told him that, because I am always with him during the day while Lisa works. We never thought that he would freak out over that. So, he probably has worked out this cold into some horrible disease. Poor kid, he’s so scared.

Me: “You know that Mamu and I are REALLY healthy, right? I just have a little cold. Just some sneezing and coughing. The doctor is just going to look in my ears and in my throat and give me some medicine to make it go away. I’m fine!! Mamu’s fine!!”

Lisa: “We’re both healthy and strong.”

AJ: “You’re OK.”

Not a question, just repeating what we said. But I'm not sure he gets it, or he's just repeating it.

Me: “I work out, everyday, right?”

Lisa: “I do karate, right?”

Me: “ We’re strong. We’re healthy. And we’re young.”

Lisa: “Grandpa was really old. But, we’re young, and we’re healthy. We’re going to be here a really long time.”

We’re tag-teaming here. Trying our best to say everything he needs to hear. We’re a good team.

AJ: “When I’m old?”

OK, he's hearing us, and he's processing it. He's back, he's got words again, and he can use them. Making progress here. He’s feeling better now. I think it’s safe to try for joking.

Me: “Long enough for you to get sick of the sight of us!”

AJ is giggling now. I go for a tickle and a tighter hug. I ask him if he’s ready for sleeping now. He says yes and goes back to bed… but not before this:

AJ: “Love you guys!”

Us: “You too baby!”

Whew - that was a tough one. I think Lisa and I did OK, and I think we need to make sure not to get another cold.

We Don't Want Your Pity

2009-09-21T17:03:00.000-04:00

AJ and I were at my chiropractor appointment a while ago. While waiting to go in, there was the normal waiting room chit chat. Just strangers making small talk. A man came in with a stroller of triplets. Of course, everyone was cooing over them, and talking to them. They were seriously cute. But, AJ is not a fan of babies. Mostly because they are unpredictably noisy, but also, because I pay attention to them, which takes my attention away from him, however momentarily.
Anyway, that ramped him up. We got called in for my adjustment, just in the nick of time really. We almost escaped a meltdown, getting away from the horror-inducing infants. And, some woman touched his head and said how great his hair is. CRAP!!!!! He was already losing it. And she TOUCHED HIS HEAD and TALKED ABOUT HIS HAIR. These innocent sounding events are major triggers to AJ. He hates unwanted touch, and he hates anyone talking about his hair.
But, he very calmly said, "I don't like to be touched." Apparently, this was the height of rudeness to this woman, who said in return, "Well, exxxxcccuuuussssseeeee meeeeeeeeeeee!" I turned to her and calmly said "My son is autistic, and unwanted touch is painful to him."
I wanted to educate her, to let her know not to assume he was just a snotty kid, with an attitude problem. Instead, what she said was "Oh, the poor child. And how terrible for you. What a horrible thing to deal with!! Horrible!!" I tried to tell her it wasn't horrible, that I was just letting her know what was going on, that we didn't want her pity. But, the doc was waiting, and more importantly, AJ was waiting. He'd had enough, and at that point, so had I.
So, how do we educate without it looing like we want pity. We really, really don't . I don't want people thinking my kid is an ill-mannered brat, but, I don't want the reaction I got either. Maybe I just shouldn't care, but somehow, most of the time, I do.

Glee

2009-09-17T17:49:00.001-04:00

GLEE - by definition (according to your dictionary.com): lively joy; gaiety; merriment

Also a television show. I was waiting for this show with great expectation. Jane Lynch is in it. I love Jane Lynch. She’s smart, funny, acerbic, and just cool. The show is about a glee club and the teacher that’s trying to keep the glee club at the school. It’s really about mocking the social hierarchy of high school. Now, in high school, I was in band and the math club, so I know something about school hierarchy. Not to say I had no friends, or that I got picked on, because, for some reason, I didn’t. But, to say the least, I wasn’t in the stratosphere.

In the series premiere, there is a boy in a wheelchair. He’s in Glee Club. He gets picked on, but no more than the other geeks in Glee. So, I was very happy about that. He was just one of the kids. There is a gay student. Not as happy about that. A walking stereotype. But, I’m still giving the show a chance.

Jane Lynch plays the coach of the Cheer Squad. She’s just nasty. They need to establish that. Here’s how they chose to do it:

JANE LYNCH: (As Sue Sylvester) So I had a little chat with Principal Figgins, and he said that if your group doesn't place at regional, he's cutting the program. Ouch.

MATTHEW MORRISON: (As Will Schuester): You know, you don't have to worry about glee club. We're going to be fine.

JANE LYNCH: (As Sylvester) Really? Because I was at the local library, where I read Cheerleading Today aloud to blind geriatrics, and I came across this little page-turner: "Show Choir Rule Book." And it turns out you need 12 kids to qualify for regionals. Last time I looked, you only had five and a half. Here - cripple in a wheelchair. I also took the liberty of highlighting some special ed. classes for you. Maybe you could find some recruits because I'm not sure there's anybody else who's going to want to swim over to your island of misfit toys.

UMMM, WTF??? Really, was that necessary? Really? Making fun of special ed?? Really? Don’t these kids have enough obstacles in life? We need television shows to make fun of them?

But, OK, I think. I’m being too sensitive. They need to establish that she’s horrible. OK, she’s horrible. Job done.

Next episode. The gay student is talking to the girl who’s the “best singer”. She is thinking that if Glee does well, maybe it’s her chance with the popular kids. His response:

"Even the Special Ed kids get more action than us."

OK, not necessary. Doesn’t move the plot forward, doesn’t move his character forward. It’s just played for comedy. Oh, ha ha, those pathetic special ed kids. We must be horrible if those losers get more action. What could be more pathetic than special ed kids? That’s how bad we are - we’re worse than them. Oh, yeah. That’s funny. Can’t stop laughing.

Excuse me if I don’t feel the “Glee”.

Being AJ's Mama

2009-09-16T10:47:00.001-04:00

Kate - an update for you. :-x

There are lots of things you learn when you become the parent of a special needs kid. You learn patience, you learn to fight - HARD, you learn unconditional love, and you learn to ignore the unsolicited advise from the parents of NT kids. And lots more. I can't remember what else, because you also learn that you have no memory because you've learned to live with very little sleep.

But, I've realized lately that AJ is teaching me lots about myself.

1. I am a drama queen

I learned this one when AJ was helping me pick out frames for my glasses

Me: "AJ, I've narrowed it down to two choices. Which one do you like?"

AJ: "That one, Mama. Because they are dramatic, just like you. Because you are a drama queen!"

Sadly, he was right. And I love those frames!

2. I have spit bubbles in my mouth

Apparently, when I open my mouth just a little, like to do something annoying like breathing, you can see "disgusting little spit bubbles in my teeth". Ewwwwwww.

3. I have gross sweaty arm pits

I had just finished working out downstairs (no more gym for me - I just can't get up at 5:00 anymore and pay for the privilege of doing that - I work out at home now). Normally, I shower right after that, but I was so hungry, I decided to eat breakfast first. AJ was eating breakfast too.

AJ: (top volume) "MAMA, TURN SIDEWAYS, I CAN SEE YOUR ARMPITS WHEN YOU SIT LIKE THAT!!!!"

OK, I was confused. Did we move to a country where it is indecent for a woman to show her armpits???

Me: "Ummm, OK. But why?"

AJ: "Because your arm pits are sweaty, and it's disgusting. I'm trying to eat here!"

Just try not to laugh. Go ahead, I dare you. It's just funny!

4. I'm not a teenager, and I shouldn't dress like one

AJ and I were getting ready to go swimming. I normally wear a one piece. I'm 44 years old (almost), and I've had a child. Some things should not be seen in public. But, that suit had not dried (we swim ALOT), so I have an emergency bathing suit. That one has a sports bra type top and LONG trunk bottoms. Trust me, not much was showing. I'm not exactly a flasher.

AJ: (top volume) "WHAT ARE YOU WEARING??"

Me: "Ummm, my bathing suit?"

AJ: "Mama, some things really should just be for teenagers. Don't you think you're a little old for a bikini?"

Me: "Well, it's not really a bikini, AJ..."

AJ: "MAMA, I CAN SEE YOUR (whispering) stomach"!!

Heaven help us. A 40+ stomach seen in public. Alert the media!! :-)

5. I give "wet blubbery" kisses

AJ doesn't like kisses. Never did. Even as a baby. Really hard kisses are OK, soft kisses - not so much. So I was giving AJ hard kisses, just playing with him. Suddenly:

AJ: "Mama, no more kisses!"

Me: "OK, why not? Too soft?"

AJ: "No, too wet. For God's sake, Mama - dry your lips before you kiss someone. Noone likes wet blubbery kisses, you know!"

6. However, despite my many flaws, too numerous to list:

AJ: "Don't worry, you're still a pretty good Mama. I love you!!"

Well, I guess that's alright then!!

I'm OK Now

2009-08-27T09:44:00.000-04:00

It had been a hard week. Hard does actually not begin to cover it. There were days when we couldn't leave the house. Days when there was more yelling than speaking. There were meltdowns on both our parts, and there was hitting on his part. I don't hit, or rather I don't hit people. Pillows on the other hand - well, they got hit this week. Anyway - a hard week (maybe even several weeks - I lose track).

At one point though, there was a break in the action. AJ came up behind me and gave me a big hug. It was the first time in at least week that he touched me without violence. At first I just enjoyed the hug. But, I gradually realized that it wasn't a regular hug. It was too intense. And it was getting more intense.

I turned around and picked him up and put him on my lap. He's a big kid, almost as tall as me. He doesn't fit on my lap - but he hasn't noticed that. Anyway, he started to make this screaming sound. But without opening his mouth. You know, the kind you can make in the back of your throat. Go ahead and try, I'll wait...

Ok, if you did it, you realize that after awhile, that hurts your throat. It's the kind of noise you would make if you were in serious pain. So, I knew he was in pain - serious emotional pain. He sat on my lap, making that sound for almost 45 minutes. I just held him, and spoke nonsence words quietly. Sending my love, feeling his pain. Trying not to cry.

Then he started to cry, for about 2 -3 minutes (he's not much of a cryer). Then he just stopped. He looked up at me with his giant blue eyes and said:

"I'm sorry. I'm OK now. Thanks, Mama."

Five minutes later we were playing and wrestling. I'm exhausted, but I'm OK now too.

Stranger in a Strange Land

2009-08-13T19:00:00.000-04:00

I have always known that my son has a difficult time with the social aspects of life. He's autistic - that's kinda the thing. I give him all the tips and tricks I can for dealing with people. He asks questions about people and what to do. But I just didn't understand the depth of his lack of understanding until we had this conversation:

AJ: "Mama, I've noticed people like to socialize."

Me: "Yeah, it's kind of an NT thing."

AJ: "But, why? WHY do people like to socialize? WHY do they NEED to socialize?"

Me: "Hmmmm, not sure. I guess people just like to feel connected to other people. It makes them feel less lonely, I guess."

AJ: "Why can't they just feel connected to themselves? Why do I have to learn to socialize - why can't they learn to NOT socialize?"

Me: "Because there are a lot more of them than you."

AJ: "That's a stupid reason!"

He's right, though. Why should he have to change? Why can't we all just let people be who they are? Why do we all feel the need to make people do things that we like, that we need? Why can't we just accept that everyone is different and everyone needs different things to be happy?

It's a difficult world for people who are different. Maybe we could all learn to help to make it easier.

Happy Birthday

2009-08-11T18:37:00.000-04:00

Today, AJ turned 9 years old. It's unbelievable to me. It seems like just yesterday that I was in a neverending labor (76 hours all together). When he was finally born, it was a miracle. I was never supposed to be able to get pregnant in the first place. He was so tiny, only 6 pounds even, but 21 inches long. You could count his ribs (still can, actually). He was absolutely perfect. So incredibly beautiful that he took my breath away.

Right away, though, he seemed more sensitive to stimulus than other babies. He cried more and slept less. We just thought that he was high maintenance, like his mama. He was developing cognitively right on track or early. He was speaking words by nine months old, and sentences by 1 year old. He read early, too. But, he didn't crawl until 1 year, and walked by 18 months. He didn't want to play with the other kids. We thought maybe he was so bright that he was frustrated by the other kids. That may have been part of it.

At first, he didn't seem that much different than other kids. Even after his diagnosis of Autism, the differences were pretty minor. He social skills were a little delayed, he gross motor skills were a little delayed, he melted down a little more. But in kindergarten, and even first grade, it didn't seem that big.

Now, though, the differences - well, they're huge. The kids his age care about fashion already. They care about their friends, and don't want to hang out with their moms. They don't meltdown, at least in public. They get embarassed by their parents in front of their friends.
AJ doesn't do any of that. And it breaks my heart. I watch the gap between him and the other kids get bigger and bigger. I wonder if it's unsurmoutable. I wonder how he will function in the world. I wonder how he will handle the working environment. He just doesn't like people, and he just wants to avoid any and all socializing at any cost.

So, I worry. Constantly. But, those big blue eyes, and that amazing giggle still take my breath away. That sweet smile can melt anyone's heart. So, on his birthday, I'm making a wish. I wish people would learn to accept differences. To open their hearts and notice the beauty in our kids. To make the world a safe place to live and love and be safe for everyone, even if they're different, just because they're people. For my son, and all the people in the world like him, I'm working my butt off to make this wish come true.

Too Funny

2009-08-06T16:40:00.000-04:00

I'm upstairs checking my e-mail. AJ is downstairs, reading. I try to encourage individual time. Since we homeschool, we are ALWAYS together. So, my opinion, we just need some separate space.

So, anyway, I just heard hysterical laughter. HYSTERICAL!!!

Me - Hey, AJ, what's so funny?

AJ - Funny stuff, Mama.

Me - What's funny, AJ?

AJ - Tom and Jerry Marathon on TV.

Me - What are they doing that's so funny?

AJ - I'm not sure, but it's making me laugh my ass off.

OK, WHAT?????????????? Now I'm laughing my ass off.

This Is Where I Belong

2009-06-16T14:30:00.000-04:00

AJ and I joined the Audubon Society. It's our plan to do all the hikes in our area. So, on Monday, we headed out for our first one. AJ loves the woods. It's quiet, with very little stimulation. Also, AJ HATES bugs. HATES! And, he is terrified of them. But, in the woods, he decided not to be scared anymore. Being there was more important to him. More important than the hated and feared bugs. That is amazing.

I let him use my digital camera. He was taking the most beautiful pictures. He's got a great eye. I was so impressed. I'm thinking he's getting a digital camera for his birthday in August. He has a "kid" one, but the resolution sucks, and he knows it. He's just so good, and it makes him so happy to take pics. He's really gentle with the camera, and knows how to use the macro features, and turn off the flash.

Anyway, the point was, as we were walking around, AJ was just so happy. He kept saying "This is it, Mama. This is where I belong. This is my place." And it is. Everyone has a place - a place where they feel whole, and comfortable. Nature is his. We are going to spend more time there - in his place, where he belongs.

Peace out.

What Are You Doing?

2009-06-15T08:58:00.001-04:00

Lately, whenever we are together in a room hanging out, AJ will ask me "What are you doing?" He's sitting next to me. He'll be watching a video, or reading. I'll be doing one of three things - working on making jewelry, checking my e-mail, or reading. It's not hard to figure out. So, at first, when he started doing this, here's how it went.

AJ: "Mama?"

Me: "Yes?"

AJ: "What are you doing?"

Me: (calmly) "Reading, sweetie."

I was thinking that if I just answered, eventually he would figure out that I was doing exactly what it looked like I was doing. Nope, it didn't work. Here's what I tried next:

AJ: "Mama?"

Me: "Yes?"

AJ: "What are you doing?"

Me: (calmly) "What does it look like I'm doing?"

AJ: "Reading?"

Me: (really trying for calm) "That's right, reading, sweetie."

I was thinking that if I asked him what he thought, and he found that he was right, he would stop asking, and just look. Strike two. Here's next:

AJ: "Mama?"

Me: "Yes?"

AJ: "What are you doing?"

Me: (as sarcastically as possible, cuz it's the only way he gets sarcasm) "Wrestling aligators, sweetie." (or trekking the great northwest, or voting for the president - really, I've got millions of them)

AJ: "Mama, come on!!! You're reading."

Now, I'm thinking I won, but two minutes later:

AJ: "Mama?"

Me: "Yes?"

AJ: "What are you doing?"

Strike three! AARRGGHH!!!!!!

Peace out.

When You Notice That They Notice (Especially When You Forgot)...

2009-06-11T16:38:00.000-04:00

When you have a child with special needs, you don't forget about it very often. I am alway researching on line, reading about autism, taking AJ to his appointments, etc. So, I don't "forget" that he has autism very often.

But, last week, AJ and I went to the Children's Museum in Boston. He LOVES that place. LOVES!!! So, he was playing in the climbing structure. Being a kid. And I was just being a mom. Just a mom. Hanging out, watching him. He came out of the structure all excited. He made it all the way to the top and back. He was so proud. He couldn't do it last time, so I was so proud of him.

He was doing his happy AJ thing. He was flapping hard. When he flaps like that, you can actually hear his bones. And he does this "Stevie Wonder thing" with his head. Like when Stevie plays piano. Just freely moving his head. I'm used to it. Just AJ being happy.

I happened to look to my left for a minute. And, BOOM. I noticed that they noticed.

I heard and saw the other mothers staring at my kid.

I heard someone say "What's wrong with that kid?"

Another mother said "Probably a retard."

First mom "Glad that's not my kid."

Me: "Yeah, he's glad too."

It wasn't nice of me, but I think they had it coming. Because he's just a kid, just being a kid. Since when is that a bad thing?

Peace out.

Is He Always Like This?

2009-06-02T14:52:00.000-04:00

"Is he always like this?" This is a question I've heard, sometimes in slightly different wording, since AJ was an infant.

I always ask: "Like what?" just to be annoying. Their answers have varied, depending on AJ's age, stage, development, mood, or the person asking the questions age, stage, development, or mood.

Basically, is he always so: cranky, clingy, chatty, loud, energetic? Ummm, yeah. He's intense. He's all those things. And whatever mood he's in, he's in it 200%. So, yes, he's always like THIS. Whatever THIS is - that's what he is. He's also ALWAYS intelligent and engaging.

Where am I going with this? I don't know - but I'm so sick of that question. It just seems weird to me. It's weird enough when people who know us ask this question, but it's freaking weird when complete strangers ask this. What difference could it possibly make to them. I don't know - maybe I'm being cranky and I just need a nap.

Peace out.

Words, words, words

2009-06-01T13:19:00.000-04:00

I've not blogged in a looooong time. We are not at a loss for event, but more at a loss for time, energy, and words. I've got so much in my head, but I just can't seem to make it come out.

We've been homeschooling since January. It's had its ups and downs. It's difficult to impossible at times. But, I know he's so much better off with me. I know that he's not being hurt or abused, and I'm not nervously waiting for/dreading the phone ringing. It's better all the way around.

He graduated on Friday. I gave him a choice. Write a 2 page book report, or continue with 2 more weeks of our regular curriculum. Truthfully, I was hoping he'd choose the book report. He's getting so far ahead on the curriculum. He's supposed to be in 3rd grade, but all of our work has been 4th or 5th grade work, some 6th grade.

He did choose the book report. It was incredible. He described the settings, the characters, the beginning, middle, and ends. He gave opinions on each section, and how he felt reading it. A+++ work all the way. We're going to give him a graduation party - he deserves it.

We took him to a carnival a few weeks ago. He had a really good time. And, as it turns out, he's quite good at carnival games. You know the balloon one, where you throw the dart, and if you hit 3 balloons, you win? Well, he won. The guy running the game was shocked. He kept saying "the little kid popped all the balloons - all of them!" AJ was so proud. We were stunned and proud. Who know he had such good aim?? He didn't get it from me, that's for sure.

Anyway, lots more has happened, good and bad, but it's just stuck in my head. There'll be more blogs when the words shake loose.

Peace out.

Less is More

2009-03-25T08:31:00.000-04:00

I was at the gym last week and just dragging. I decided to do my usual bike routine, but cut back on the intensity. I usually start at level 3, and wind up at level 16 or so. But I couldn't do it. So I just stayed at level 3. At the end of 45 minutes, I was shocked to see that I had burned more calories, and increased milage. Why? Because I was able to pedal faster without all that tension.

Why am I writing about my workout?

The parallels are there. To homeschooling. On some days, my son just can't do it. He doesn't have the emotional strength to handle learning. So, we take it easy. Work at level 3, or 2, or 1. Or on some days, not at all. Because we can. Because that's the point of home schooling.

Because, sometimes, that's the point of life.

Slow and steady wins the race. Less is more. Blah, blah. The point is, and I do have one, that there's just no need to push past the point of reason. Do what you can, when you can.

See, I told you there was a point. :-)

Peace out.

Pretend Play

2009-03-12T17:39:00.000-04:00

AJ loves superhero and superhero action figures. I guess that's pretty typical for 8 year old boys. Normally, when we play with his actio figures, one of them is the bad guy (which I always have to be), and one of them is the good guy, and they fight. I have to do the sound effects, and I have to lose - because the bad guys always lose, right?

So, when he got out his new Batman (is that one word?) and Bruce Wayne action figures, I thought I knew what was coming. I could not have been more wrong.

"OK, Mama, you be Bruce Wayne. Let's pretend he is Batman's financial advisor."

WHAT?!?!?! Oh, yeah - financial advisor. And he's trying desperately to get Batman to make sound financial decisons. So I actually had to say things like this:

"Batman, I've been looking over my spreadsheets, and it is quite plain that you are spending WAY too much on capes. And black shoes. How many black shoes do you need?"

and:

"Batman, you need to diversfy your portfolio. Seriously - way too invested in companies that make masks and black material"

Yeah - I've got a million of them. And, for some reason, AJ thought these were all hysterically funny, and made me say them over and over.

I think someone's been watching too much Bernie Madoff coverage. Where does he come up with this stuff!?!?!

Peace out.

Could this be OCD??

2009-02-21T09:19:00.000-05:00

Last night, AJ couldn't sleep. He was in and out of our room at least 5 times before 10:00. Finally, he said he played a scary computer game, and he couldn't get it out of his head. He and I wound up in the guest room, where he slept just fine - because I was there. OK, that sounds like anxiety to me, and we're working on that one.

This morning, AJ wouldn't get dressed. Actually, all week, he hasn't wanted to get dressed. But, this morning, he was hysterical about it. Finally, after he yelled at us for about 30 minutes, he said he was afraid that there was something in this clothes, and he was afraid to put them on. Lisa showed him how to turn them inside-out to check. Then, he put them right on. So, OCD? Anxiety? Anyone have a clue.

He does have lots of quirks and rituals, but that's just typical of autism. So, we're having a hard time deciding where this one falls. We finally got the name of a good child psychiatrist. I'm making an appointment with her on Monday. Maybe she can untangle all the pieces. But, it could be a while before we get the appointment, so in the mean time, I'm trying to figure this one out. If anyone has any insight, maybe drop me a line.

Peace out.

More About Cures

2009-02-15T11:03:00.000-05:00

AJ is very concerned about "curing autism" lately. It's all over the news and the blogs I read. He's also been thinking about cancer lately. We live near a Starbucks that is involved in the American Cancer Society fund raisers, so we see the signs all the time.

I knew that eventually, the two would collide. I've been waiting to see the result when they did. On Friday, I heard about it.

I was making AJ some breakfast. He was being quiet, so I knew something was percolating. He's never quiet. Here's his thoughts (with no prelude - he just says what he thinks):

"They should use the money they are spending on curing autism, and use it to help cure cancer. Autism isn't even a disease. Why cure it? Has anyone ever died from autism? No, I didn't think so!! Why not ask the people they are trying to cure if they even want to be cured? AARRGGHHH!!! This makes me so angry!!"

And with that, he stomped off to play with his transformers, and think about saving the world from all the people that aggrivate him.

Yeah, our little activitst for neurodiversity.

More Social Stuff

2009-02-11T12:10:00.000-05:00

AJ and I were talking about socializing. A home school group we decided to join was cancelled due to lack of interest. AJ was disappointed because he was excited about it. He asked what we were going to do for socializing. I promised him we would find another group. I also asked him if he missed his friends at school. Here's his response:

AJ: "At school, I learned something that no kid should learn."

Me: "What was that?"

AJ: "That you can't trust kids. They act like they're your friends, but then they bully you."

Me: "I know that happended to you with D."

AJ: "Yeah, but C. taught me that you CAN trust kids - just not all kids."

C. is the friend that he met that I discussed in the previous post.

Sometimes the things you learn in school are not things that you want your kids to learn - at least not at 7 years old. But, thanks to home schooling, he has seen the other side of that. Now, he feels OK about trying to meet kids, but he will always be more careful than he should be at his age. That makes me sad - but at least he is learning to trust now, instead of having to learn this as an adult.

Peace out.

But What About Socializing?

2009-02-05T15:44:00.000-05:00

Every time you tell someone you home school your child, the first question you hear is "But what about socializing?" Some people are judging, but some people are just really concerned or curious.

Being a brand new home schooling mom, I didn't have any "pat" answers yet. Luckily, the last time someone asked, there was another, more experienced, home schooling mom present. She said "The social skills you need in life are not the same ones you learn in school." And I thought "Well, that's it - that's THE answer!!" And it is. If you think about it, adults rarely have to learn how to defend themselves against kids beating them up in the playground (yes, this happened to my little guy).

And, here's another thing. AJ is autistic. 50 kids running around a playground yelling and playing is not condusive to him learning how to socialize. That is an oppurtunity to freak out over the lack of structure and the abundance of noise. He never tried to socialize at recess, and his "aide" and teachers did not try to facilitate this either. At one point, AJ thought he had a friend. He was very happy. But, it turned out, the kid was playing him. This kid, after AJ trusted him, just started tormenting him. He told AJ before school one day, I'm going to get you in so much trouble today that you're going to spend all day in the principal's office. So that's the social experience AJ was getting in school.

But today, a home schooling mom that I met in an Asperger's group brought her son over. He's 13, so I didn't know if it would work, but it was worth trying. AJ was soooo nervous. He just didn't want this kid to come over. I think he was afraid of it turning into the same situation. But, it went absolutely great. This kid was just amazing. He played with AJ, and they just hung out. They both had a really good time. AJ was so happy!!! When he left, AJ turned to me and said "Mama, I think I maybe found a friend - a real one!" I almost burst into tears. I just gave him a big hug, and told him I think he did.

Now, that's socializing!!

Peace out!!

Ch-Ch-Ch-Changes

2009-02-04T11:26:00.000-05:00

Normally, changes in schedule don't go over well in my family. AJ HATES any disruption in his routine. We try to avoid disruptions, but sometimes life happens.

On Saturday night, we had a friend from high school over to our house. We began preparing AJ a week before it happened. He doesn't know our friend. He wasn't happy. He kept saying he wasn't going to talk to her, he wasn't going to go out to dinner with us, etc. etc.

On Saturday, we were nervous about what would happen. Our friend is pretty laid back. And very non-confrontational. We knew she would not get all up in his face, the way some adults do. Also, she has very curly hair too, so we knew she wouldn't comment on his hair - which is a big trigger for him.

So, she got to our house, and AJ took off upstairs. We finally got him back downstairs to discuss where to go for dinner. Everytime we all agreed on something, AJ changed his mind (even when the idea was his). Finally, everyone (including AJ) agreed on a place. We went there, and he calmed down alot. He ate almost all of his dinner, and occasionally engaged our friend in conversation. He did great.

At home, the plan was that the adults would watch a video, and AJ would go to bed at his normal time. His bedtime routine was completely screwed up. Every single thing about it was different. And he just rolled with it. Didn't complain once, didn't melt down, didn't fight. He went to bed at pretty much regular time. We were shocked!! He only came downstairs once (he usually comes into our room multiple times). Even then, he just wanted an extra hug. Then he went right back upstairs. Our friend stayed until almost 2:00. And, when we went upstairs, he was asleep.

Maybe it was just a fluke, or maybe he is learning to deal with change. Either way, it felt good - and boy did he get lots of high fives the next day!!!

Peace out!!

Differences of Opinion

2009-01-28T10:27:00.000-05:00

AJ and I were watching a show about cloning a dog. There was a couple whose dog died. They missed him and decided to clone him. AJ wanted to know more about it - so I gave him the Reader's Digest version. I told him: "They take the DNA from the dog, and use a female dog to have a puppy with the same DNA as their old dog. So the puppy is the baby version of the dog that died." He thought that was so cool.

My reaction to cloning is just based on the "Yuck" factor. I can't help but take it to the inevitable conclusion of cloning humans. Just can't go there. So, I told him that I don't like cloning, and it makes me uncomfortable. AJ just thinks I'm missing the point. He told me "Well, if they love their dog that much, they just can't be without him. It's simple." Hmmmm...

He then told me that when I die, he's going to clone me. OK, kinda cute, kinda creepy.

"I would just be a baby. You'd have to take care of me."

"I would do that for you."

"You would have to change my diaper."

"I'd get someone else to do that!!"

"You'd be my dad."

"I'd still love you - you'd still be Mama - just littler."

OK, that's hard to argue with. And maybe it is that simple. Or maybe it's still yucky.

Search for the "cure"

2009-01-24T17:41:00.001-05:00

When I tell people I have an autistic son, they often ask me what I am doing to try to "cure" him. I don't have an answer to that. Here's why.

When we first got a diagnosis for AJ, he was almost 4. We had suspected Asperger's for quite some time, but couldn't get a doctor to do any testing, because he was sooooo verbal. Anyway, as soon as I had a diagnosis, I explained it to AJ. He asked questions, and we moved on.

After talking to some parents, and doing research, I started reading about "cures". I explained to AJ about these cures, and asked him what he thought. He sat there for a while, and then blew a raspberry. Yep, a raspberry. At the age of 4, that was AJ code for "I'd rather be boiled in oil".

Periodically, since then I've been asking him about it, every 6 months or so. And I always got the same old raspberry.

Recently, though, I asked him again. He thought about it for a really long time. Here's what he said:

"Well, you know, autism makes some things hard. I don't understand people, and they don't understand me. It's hard to make friends, and I don't understand alot of social rules. But, autism is who I am. It's a part of all of me. I wouldn't want to change me. You know autism Mama, can't live with it, and can't live without it!"

And so, that's the decision. And I agree with him 100%.

Now, lots of people tell me that I would feel differently if I had a "low functioning" child. And so I dutifully did my research. I read blogs from people on the "low" end of the spectrum. Sure they need supports, but from the blogs I've read, they're pretty happy with their lives, and don't want a cure, thank you very much.

I've learned alot about "communication skills". I've learned that everyone communicates, just not everyone communicates verbally. Some communicate with pictures, some with writing, some with actions.

So, when you're thinking about cures, it's probably best to ask the people you want to cure if they want to be cured.

Just my opinion (and my son's). I know this is very controversial. Let's play nice.

Peace out.

Social Skills and Songs

2009-01-21T12:09:00.000-05:00

Yesterday, AJ and I were driving from a homeschool group (which didn't happen - but that's a story for another day). He said something which most people would consider rude. I knew what he meant, and I knew he wasn't trying to be rude. But, still, I felt the need to explain to him that what he said would normally be considered rude, and how to say it differently. These explanations are usually completely meaningless to him, but I feel the need to keep trying. Not everyone will be accomodating, or even understand that he isn't trying to be rude. He just says exactly what he thinks. Tone and semantics mean nothing to him. At least at this point.

Anyway, after my explanation (probably long-winded), he asks me "Why do you have better social skills than me?". I tell him that he has Asperger's, and sometimes these kinds of issues will come up for him. He answers me that I have Asperger's too. This is his theory. I have never been diagnosed. But, I figure, he knows more about Asperger's than a doctor who isn't autistic, so he's probably right. I am left with explaining to him that I'm older, so I have more experience dealing with people.

But this makes me remember all the times when I've made social faux pas. Or when people have been angry with me and I haven't understood why. Or when I have believed lies, or trusted someone not worth my trust. I've been told that I'm rude, or not very flexible, or too sensitve. So, he's probably right. Whatever. I'm me, and he's him. And we just are.

On another note, AJ's been writing poems/songs. These are songs that are not to the tune of anything I've ever heard. He makes that up too. Here they are:

BUMPER CAR
By: AJ
You tell me to do
This that this and the other thing
You tell me it's all so important
And I tell you
I'm not a bumper car
So why don't you just stop
Pushing me around now
I can't believe how lazy
You have gotten

SLEEPLESS NIGHT
By: AJ
In the morning, as school starts
I think it's gonna be a sleepless night
Sleepless night
Sleepless night
Sleepless night
With the moon shining bright
It's gonna be a sleepless night
All night long

Yep, he's a cool kid.

Restaurant Etiquette

2009-01-20T15:35:00.000-05:00

A few days ago, we decided to go out to dinner. This can be tricky, so we usually let AJ have some say in where we go. Some places are too loud, some too bright, some too small, some have no good choices for him, etc. So, he picked one of his favorites.

We go to the restaurant, and there is a wait. Luckily, it was a small wait and all was well.

Then, we got our table. Next to an entire soccer team of 10 year olds. All boys, and all loud!! Really, really loud. That was to be expected, there were like 15-20 kids. It's going to be loud. NT kids socialize. We get that, and we, including AJ, were dealing with it. Then the running around started. The parents of these children were sitting at a different table, and didn't even once look up, and ask them to behave appropriately.

These kids ran around, bumped into wait staff, threw food, yelled, pushed, and did everything that you are basically not supposed to do in a restuarant.

It made me think of all the times, when AJ was having a tantrum, that people said to me "Can't you control your kid?" Well, obviously, we are doing a hell of a lot better than these people were doing. And let me just say, that if that behavior is what passes for "normal", they can have it.

My little family sat there with our ears plugged, AJ crawled onto my lap and rocked, and we just hoped they would leave soon.

So, I wanted to ask these families "Can't you control your kids?!?"

Home Schooling is HARD!!

2009-01-08T15:06:00.000-05:00

Well, we are on day 4. Day 1 was easy. AJ was extremely cooperative. He worked hard and was willing to learn. Day 2, still pretty good. He was still trying hard. Day 3 was yesterday. He was in a bad mood. Home school had lost its newness, and he discovered that he still has to do work. All of a sudden, he was uncooperative and just not willing to try.

Today was just impossible. Every time he came back from a break, he wanted another break. And today was supposed to be the first day of his theater group. It was sponsored by our local home schooling group. I drove an hour to get there. Ten seconds after we got there, AJ was making faces at me, and covering his ears. I'll admit it was a little loud. They hadn't started yet, and the other kids were playing. Not screaming, mind you. Playing. I made suggestions to leave for a few minutes, until they got settled. But no. We had to leave, immediately. MELT DOWN was imminent.

So, 10 minutes after driving for an hour, we got back in the car to drive home. Was I frustrated? Oh, yeah. Frustrated was not even the word. But, I stayed calm and just drove. And drove. And drove. Because there was traffic. We finally got home 2 and 1/2 hours after we left the house. AARRGGHH!!!! I gave him a break before we got back to work. A long break. 10 minutes after we got back to work, he wanted another break. Yep, 10 minutes. OK. So, maybe he just gets burned out. Maybe we try to do everything in the morning. Maybe he gets burned out by afternoon. But we were working on a puzzle. Fun stuff, right. Not like I was asking him to work on something hard. He likes puzzles. But, he wanted to play on the computer. Maybe I need a new rule? No electronics before 3:00. No matter what. Even on a break. Maybe I'll try that tomorrow.

We'll see. Peace in and out.

Happy New Year

2009-01-05T13:52:00.000-05:00

Wow! Christmas (all holidays, actually) on the spectrum are "intersting".

Christmas Eve was a complete disaster for AJ. We went to a local restaurant with my family. My sister, her husband, their three kids, assorted boyfriends, and my parents. The restaurant was horrible. The music was too loud (we asked them to turn it down), the flourescent lights were buzzing (they were driving AJ and me nuts - but no one else could hear them). The service was just plain bad. They were soooooo slow. AJ was going nuts waiting for his food. At some point, he just needed to be on my lap. Then he started moaning (which is new).

Finally, the food came. It was awful!!! AJ would not even eat his, and we had to order something different for him (which was only marginally better). Almost everyone else had to send their food back (the meat was barely cooked). Mine was disgusting. There was no way I was going to send it back - that was just make the whole process longer.

AJ and I kept getting up to take walks around the restaurant - that usually distracts him and gets him through the experience. But, then, when it looked like no one would EVER be done, AJ just lost it. He was moaning loudly, and started saying "I just can't do - I can't take anymore). That did it. AJ and I just went to go sit in the lobby. We played tug of war. People stared, people glared, people discussed my child, and my parenting skills. We just played tug of war.

Finally, everyone was ready to go.

We were going to my sister's house for dessert. AJ was up for that. He knew there was going to be presents involved, and chocolate. Even AJ can't resist presents and chocolate!! :-)

That part didn't go too bad. He got one present that he really loved!!! My sister got him a plasma car. Google this. It is so cool. Even I played with this, until AJ wanted it back. It's FUN!!

At home, AJ just could not get to sleep. This produces anxiety for AJ, because he worries that Santa won't come until he's asleep. The anxiety just makes it even harder to sleep. It's a vicious cycle. But, finally, he did get to sleep. Finally. Really, really late. But, Santa understands about insomnia, and came anyway. AJ loved all his presents from Santa, and from us. Yay!!

He got a really awesome electronics kit from Santa. We actually spent some time learning about resistors in series and paralell. He built a circuit to turn on and off an LED. It was so totally cool, and I really had to break out my brain. It was good for me to relearn my circuits, and there are 74 more projects to go! There are home school projects for days!!

We had one week off, which we spent just trying to have fun. Some of it was not so fun. Sometimes anxiety takes over, and AJ has a difficult time dealing with life. Sometimes we have difficult times dealing with life too. The combination is not good. But we muddled through, and managed to have a pretty cool vacation.

Today was our first day of home school. It started out with an IEP meeting at his most recent placement. This meeting was setup before the final decision to home school was made. I started the meeting by letting them know about the decision to home school. They were clearly not thrilled with our decision. But, clearly, what were our choices. After what happened at that school, we did not feel that it was a safe place for him to be, either physically or emotionally.

AJ was soooo easy to teach. Yes, he needs lots of breaks. He needs lots of redirection. He needs visual stimulation. But, he is so eager to learn new things. We did math, spelling, reading, civics, science, and PE. He is even smarter than I thought. He is able to retain anything in his "filing system". Amazing kid, just amazing.

I really think this home school thing is going to work out just fine.

Peace out!!

Still snowing

2008-12-22T14:20:00.000-05:00

It's Monday, and school was cancelled again.

Considering how many times AJ has been in this school since he started, we might as well homeschool. He's been at home more than at school, anyway.

Weekends are always difficult with AJ. Without routine, he just falls apart. School cancelled on Friday. We just hung out and had a relaxing day. On Saturday, we had to run all our errands, because we were nervous that the roads would be even worse on Sunday. So, grocery shopping (which he hates more than anything) and runs to Target. So, by the end of the day, he was just completely overwhelmed.

At around 10:00, he came into our room, and said he just couldn't sleep. Insomnia is pretty normal to him, but he seemed really freaked out. I rubbed his head for a little while. He asked if we could make a compromise. I know what that means. I asked if he wanted to do "slumber party". That means sleeping on the floor in our room. I didn't even finish asking, and he was gathering his "supplies" - which to him is a pillow and a blanket. He was asleep in about 10 minutes. I, on the other hand, was up till 4:30. I often have insomnia too, so on Sunday morning, not feeling my cheerful best.

Sunday was fudge baking day for us. We make fudge every once in a while. AJ and Lisa do it, actually. I just watch. They did a great job. AJ wanted fudge before dinner. He asked if he could have it. Lisa immediately answered "no". She is much more strict than I am. He just looked at her and said "Mamu, you were NEVER a child!" Come on, how can you not laugh. How cute is that???

Today is Monday, and still no school. Maybe this is the universe's way of giving me practice for home schooling. AJ and I dug my car out of the snow and ice and headed for Border's. We had a 40% off coupon. Had to use it. AJ picked out a book on hieroglyphics. He said we could "home school it". We just spent about an hour learning hieroglyphics, and he wrote "I LOVE YOU" in it. How do you not love this kid? I can't understand why the Public Schools can't educate him, but it seems that they can't. We start in January. Can't wait.

Well, It Snowed

2008-12-19T18:22:00.000-05:00

We definitely got some snow. It started at around 2:00, and by 2:30, there was already about an inch of snow on the ground. It is coming down so fast, I'm glad we're home and safe. I even called my sister to make sure she and my neice were home too. There is probably 6" one the ground right now. Insane. I hate the winter. But, it sure is pretty out there. It's so cold, though. I got spoiled from living in Seattle for 10 years. It hardly ever snows there, just endless rain. Maybe tomorrow we can go outside and play in the snow. The little man is just itching to have a snow ball fight.

Right now he and my wife are working on her work. She's showing how to download code, and debug code. She's also explaining the hardware to him. He is asking remarkably intelligent and insightful questions about both the hardware and software. He is amazing. This is why we need to home school. He is so bright and so loves learning. But he just can't function in that environment, for whatever reason. Even the most well-intentioned school personnel can't change the basic environment of the school. But, we can. And that's the point.

Snow Daze

2008-12-19T12:16:00.000-05:00

Well, I have no idea how yesterday went. No phone calls, no notes home, nothing. So much for the promise of increased communication. Whatever. I guess it won't matter now. Home school here we come.

Today was a snow day. Mind you, it's 12:30 and not even a flake has fallen. But, I guess it's coming. I had a bunch of errands to run, so I wanted to do it before the snow. We went to the post office. The little guy was asking about why it was so crowded. I explained that lots of people were mailing Christmas presents. I was nervous about him holding it together in the long wait. We HAD to wait because I was mailing the "Letter of Intent to Homeschool", and I needed to send it with a return receipt. I promised him that the Post Office always has the fastest people they have to work this time of year (if only that were true). His response: "Yeah, otherwise people would see the long lines and just say, Screw This, and leave." I laughed and told him that he couldn't say bad words. But, come on, how could you not laugh. He never swears, and it caught me off guard. The woman in front of us was not amused. When I saw the face she made, I almost laughed again. She looked like she swallowed some bad meat. Truly amusing. Maybe I need to get out more. I am very easily amused.

I got my digital camera in the mail today. I am self employed so my company bought it for me. I figure I deserve a Christmas present. I've been taking pictures and erasing them all day. I need lots of practice. I'm not exactly a good photographer. Last year my company bought me a Flip Video camera. Best thing I've ever bought. If you ever wished you had a small digital video camera, check out the Flip. It's so tiny, and so easy to use. My little guy uses it all the time. It's really only got one button. And it attaches directly to the computer to download the videos. Yeah a great buy. I'm hoping I enjoy and use the camera as much as I do my Flip.

Right now, the little man is having "alone time". I guess he's sick of me already. :-)

Peace out.

Never Ending Yuck

2008-12-18T19:34:00.000-05:00

Well yesterday at the little guys's school was more of the same. He is still hitting and being violent. I just don't get it. He won't work, he won't listen. He just refuses to work, and if they insist, he hits someone. Even the other kids. I am so distressed. I don't know if home schooling will help him to stop being so defiant and oppositonal.

Today, we made the decision to definitely home school. I am already second guessing that decision. Maybe I'm just nervous that I don't have the temperment, or that I can't help him the way he needs to be helped.

I guess he needs to see a professional. I'm thinking that therapy can't hurt. We have to do something. Fast.

Bad days and weird dreams

2008-12-17T09:16:00.000-05:00

The Little Man's teacher called after school yesterday to give me the daily update. Apparently, things did not go well. He was hitting, screaming, running, etc. I don't know why he can't seem to deal with being at school. This is a kiddo who loves to learn. But, he just can't seem to do it while he is in school. Too loud? Maybe. Too bright? Maybe. He can't/won't say. He says he is trying, but I'm not sure. He hit a kid yesterday because the kid was flapping!!! That is so surprising, because he loves to flap. And he will defend his right to do so to the death. He hit the principal, he hit the teachers, just non-stop.

He wanted to lay in a beanbag chair with his desk chair on top of him. The teacher was concerned about safety. She offered him weighted blankets, but it had to be the chair. Clearly that couldn't happen - another meltd0wn.

When everything is going the way he wants, and he is not challenged, he is the sweetest, most polite kid you ever saw. But, when something doesn't go the way he wants, look out!! I'm just at a loss for what to do next.

Of course, homeschooling is still being heavily considered. I'm not sure that goes to the root of the problem though. His violent reactions concern me greatly. We are looking into finding a psychiatrist to help him through this. Maybe there is something besides autism at play here. Maybe Oppositional Defiance Disorder (ODD), maybe something else. We have to get to the root of these issues.

Onto the dream issue.

Last night I had a dream that I just kept running. Someone was chasing me. Everytime he caught me, he told me that I had no choice, I just had to do it. I kept telling him that I couldn't do it. He would say that I could, and that I was meant to. This went on all night until I woke up. Hmmmm..... Interesting, no?

Peace out.

Where have I been???

2008-12-16T13:52:00.000-05:00

OK, life has been toooooo much!!!! The little man stayed at that placement for the rest of his school year. It was actually not too bad. Sometimes it was actually good. There were problems, but they were small, and were fairly easily resolved.

And then the other shoe fell. And hit me in the head. Twice.

At the end of the school year, we were working on the plans for next year. Reworking the IEP, etc. As we were heading out the door, the school officials casually mentions that he does not qualify for a summer program, he is too "bright" for a self contained classroom, and he may be attending another school next year. WHAT????!!!!?????

O. K. WHAT!?!?!?!?!

They wanted to pull all services from him, but they said they would do it slowly. Um.... NO!!!! We agreed to mainstream with a lot of support from an aide, a full time aide. They agreed to a summer program, kinda. They agreed to keep him in that school. BUT, to get there, we had to hire a lawyer, and spend a butt load of money. A big honking butt load.

Wait, it gets better.

He loved his summer program. Score 1.

But, in September, school started again. One more shoe. OWWW!!! This is getting painful. He is getting NO support. None. His full time aide turned into a floating aide. Someone who would show up once the little guy was in full melt down mode. He was spending every day in the principal's office. WHAT??? It just kept getting worse. I was at the school every day, getting phone calls three times a day on some days. It was at the end of my rope. I was desperate, and getting more so.

Then, we got a phone call from the assistant director of special ed for our district. She said that someone from a different program saw our guy, and felt that they were the perfect program for him. Would we be interested in seeing the program. Um, yeah. We checked it out. We loved the sped teacher, loved the aides, loved the principal, loved the program. Loved it.

We described it for the little guy. He resisted at first, and then said he would try it. He was getting desperate, too.

The first day at the new program was difficult. Lots of changes, lots of new stuff. So it went well, considering. The second day. BIG GIANT SHOE FELL!! OWWWWW!!!!

I got a call at 1:30. They said to come in, because he is out of control. I got there, and it was BAD!! There were cops everywhere. And ambulances. WHAT THE HELL??? I walked in and he was sitting on a little chair. He looked freaked out. Just freaked out. A cop got in my face and said "Do you know what happened?" I said "No, I just got here." He proceeded to tell me that the teachers (3 of them) were restraining him and he head butted one of them. He is NEVER supposed to be restrained, because he is VERY sensitive to touch. It scares him and hurts him. He was just trying to get out. The teacher got hurt. The police called my son a criminal, questioned him without me there, and said he would be charged with assault. When I told the police that he was autistic, not to mention 8 years old, and all of 65 pounds, the officer said "So what, he's still a criminal." WHAT????? Needless to say, I took my son out of there.

I got a call later from some higher power in the district saying that my son would be suspended for three days so they could figure out what to do. He said that as far as he knew, no charges were being filed. I asked him why our son was being suspended for defending himself while 3 adults pinned him to the floor. What about the teachers who were in violation of his IEP? No response other than "Give us three days. Someone will be in touch"

Wait, there's more. When we got home, my little guy crawled into my lap and cried for three hours. Then he fell asleep, woke up, cried some more, and fell asleep again. Later that night, I got a call from the lawyer mentioned earlier, who helped with his summer program. She said that the school department lawyer called us and said that our son was "facing serious charges". I spend the whole next day on the phone trying to contact someone at the school. I was finally told that "as far as he knew, there would be no charges, and someone would be in touch."

On the third day of his suspension, I kept calling the school to find out what was happening. Finally, at almost 3:00, I got in touch with the same person I'd been speaking with who said "Of course you know that's there will be a meeting Monday morning to welcome him back to school, and discuss what will happen moving forward". No, I did not know that, thank you very much, because I have been calling and leaving messages for you all day.

So, Monday morning comes, which brings us to yesterday. I got my point across that we COULD sue them for violation of his IEP, and that he could have been seriously hurt. They were being very nice. I assume that their lawyer told them that they better play nice. They apparently will be doing everything short of washing our feet to keep us happy at this point. There will be an IEP meeting on Friday. But, at this point, I have lost all trust in them, and the public school system as a whole. Too little, too late.

My little guy has been asking to be homeschooled. We had a practice run while he was suspended. That is probably what will happen right after Christmas. What follows is his list of reasons for homeschooling.

1. Work gets done
2. Extra work gets done
3. No bullies
4. The room is quiet
5. Mama gets company
6. I have good behavior
7. No issues with the bus
8. Really good field trips
9. No backpacks to carry
10. Great learners
11. Great teachers
12. Nice classroom
13. I'm comfortable here
14. Mama gets extra hugs
15. PLEASE!!!

And his speech:

These past three days have been the best school days of my life because of you. You are the best teacher I've ever met. You take me on the best field trips. For the first time, I like school.

OK, anyone out there have homeschooling resources, curriculum, any idea how the heck I should get started???

Peace out

Getting back on track...

2008-01-03T10:32:00.000-05:00

...slowly. The little man had a much better first day at school than we expected. His aide said he had a rocky start, but he pulled him together for the rest of the day. He did his homework without protest, and did a great job. It was actually neat enough to read. We had a little problem at bed time. Could have been just regular 7-year old stuff - we never really know. He was just soooo obnoxious. Good thing he is so cute!! :-) We just love our little guy.

Peace out - peace in. Remember to breathe.

How do we spell relief?

2008-01-02T12:29:00.000-05:00

H-O-L-I-D-A-Y-S O-V-E-R!!! Geez, I used to love the holiday season, but it's just so hard now. The lack of structure, the family things, the chaos, etc. It's all so much. The little man loves it and hates it at the same time. He's tense, stressed, and so excited. As a result, he's very cranky and short tempered. He's yelling at everyone, and tantruming almost non-stop. He's back at school now, and I expect it to be a difficult day. I'm dreading the report I'm going to get when I pick him up.

We are looking forward to getting back to normal ASAP!!!

Happy New Year everyone.

Peace out - peace in.

Holidaze

2007-12-24T09:15:00.000-05:00

Since Thanksgiving, the little man has been out of control. He is so stressed out and anxious about Christmas. Constant tantrums, problems in school, defiance, fighting, etc. We can't wait for this season to be over. He is streesed about being around so many people, so many changes in his normal schedule, etc. And yet, he is excited about Christmas. It has just been so stressful for all of us. After the holiday break, it should all go back to normal on January 2nd, we hope. And this too shall pass...

Peace out - peace in...

The Blame Game

2007-10-24T10:37:00.000-04:00

Whenever someone new finds out you have a child with autism, several things can happen:

1. Pity in the form of "Oh, you poor woman. How do you do it? That must be so hard. etc, etc"
Ok, Moms with autistic kids don't want pity. We love our kids, we are proud of our kids. Being a parent is HARD. Being a parent of a child with autism is HARDER. But, they are our kids. They are not a tragedy - they are people.

2. Blame in the form of "Did you vaccinate him too soon? Did you eat tuna? Did you give him too much sugar? Did you hold him too much? Did you not hold him enough? etc, etc, etc" Come on people. STOP!!!! More than anything else - there is no known cause of autism. There is no blame. Just stop. Just listen. Just support. Enough with the blame!!!!

Don't surprise him

2007-10-10T13:20:00.001-04:00

When will we learn?? We took the little man to Water Fire in Providence. We had so much fun there. Lots of people, lots of noise - and still, he had fun, and so did we. Then he wanted to go get ice cream. It was a warm night, so we said OK. But it was late, so we told him that he couldn't have "snack time" at home - that this would count as snack time. He had a fit and said he didn't expect that and it wasn't fair, because we didn't warn him. I had to admit - he was right. We wound up compromising on a shorter snack time. When will we learn?!?!?! Let him know first - come on - how hard is that?!?!

Peace out.

Smooth Roads

2007-10-03T09:56:00.000-04:00

Well, we seem to be past the bump. He is still not wanting to write at all - he HATES to write. It is so hard for him. And if he can't do something perfectly, he'd rather not do it at all. We are trying to let him know that it doesn't have to be perfect, but I don't think he's buying it at all. OK, if anyone is reading this - any ideas on getting an Aspie to write? I hate to make him do things he hates, but it's school. What can we do?? They will let him use a keyboard, but he's not really interested in that, either.

We just keep on keeping on...

Peace out.

A Bump In The Road

2007-09-26T12:13:00.000-04:00

Yesterday was a bump in the road. At least we hope it was a bump, and not a trend... Yesterday afternoon our little man refused to do any work at school. The second half of the day was a complete wash. He wouldn't/couldn't do any work or, in fact, cooperate at all. He wouldn't talk to me at all. Full moon, maybe? Who knows. Hoping today is a better day.

Peace out...

Getting Better

2007-09-20T14:00:00.000-04:00

Well, school is getting better. Since Monday, he's been spending almost all day in the regular ed class. Maybe an hour - 2hours in special ed. So, definitely headed in the right direction. I know that he's trying very hard, and the teachers are trying very hard for him. At least we feel like we know what they are doing. I guess we'll see what happens now...

Peace out.

Let the fun begin

2007-09-14T13:13:00.000-04:00

Well, I just got a phone call. The munchkin was screaming in the background. He was yelling that he can do whatever he wants, and that he doesn't have to do anything he doesn't want to do. I am at my wits end. Every school he has been to has tried to have him removed. The last one actually succeed. This is our last shot - and he's only 7. He is so totally out of control. Everything is fine as long as he is doing what he wants. The minute he has to do something he doesn't like, or someone tells him no, the screaming and hitting starts. I can't even imagine what will happen next. I don't know where to turn or what to try. I have to pick him up from school in one hour. So not looking forward to that...

Moving up and out

2007-09-14T10:56:00.000-04:00

Well, the first day of the new school went...OK. He did not spend much time in the "regular ed" class room, but no one expected him to on the first day. I did not get one phone call, though. And, when I picked him up, he was relaxed and happy. He wants to go back and try again. When I dropped him off, he didn't beg me to stay, and just followed his teacher in. His teachers like him, and recognize his intelligence, even through the fits and non-compliance. I think this placement will work out MUCH better. It's still really early in the game to say for sure, but it certainly seems better so far.
Peace out.

School Daze

2007-09-12T12:59:00.000-04:00

OK, so it's been a looooonnnnnnggggg time. Things have been so crazy. Summer school was difficult, and then we started "real" school. This was the first year he was completely mainstreamed. It has been a disaster from the first day. They have called me everyday (for 9 days). Now yesterday I find out that NO ONE in the school has any autism experience at all, that the school last year exaggerated his progress ALOT, and that the "team" at this school wants him OUT. We have had to scramble to find him a new school against our wishes. I am beyond angry, and beyond upset. We found a school that has an autism program, but they are mostly profoundly autistic. They are, however, willing to do everything possible to work with him, stress inclusion, and may even facilitate skipping a grade if possible. He will start there tomorrow. We are all flustered, and I am, as I speak, writing a whole host of letters about this mess to whoever I can think of. What a mess. We can only hope and pray it works out for this best. I give it 3 weeks, and then I will reevaluate.

NOOOOOOOOOOOOOO!!!!

2007-04-14T18:40:00.000-04:00

OK, we're sleeping a little better. But now, it's all tantrums, all the time. Yesterday we went out to breakfast before school. We do that sometimes, just for fun. Little man decided he wanted to go somewhere else before scchool. Anyplace, really. Toy store was choice number one. BUT, there was of course no time. Somehow that did not make sence to him. So, there was head hitting, yelling, kicking and screaming. Because I "refused" to make some time. The fact that there was no time to do that was completely insignificant to him. "But Mama, make some time!!"

That is one example, but it's been endless tantrums about EVERYTHING. Getting in the shower, getting out of the shower, getting dressed, having breakfast, putting shoes on, going to school, doing homework, eating dinner, getting ready for bed, going to bed, staying in bed... Need I say more?

Yikes, what's a mama to do??

Oh, well, keep on keeping on, I guess...

Peace out.

We can do magic...

2007-04-12T13:35:00.000-04:00

OK, not really. But we bought him a sound machine. It makes different noises which you can pick. He picked "bird". He is definitely getting to sleep earlier, but he comes into our room continuously from 8 to about 9:30. But that is WAAAAYYYYY better than it was.

We shall see if this will last. Who knows.

Peace out.

We need sleep!!

2007-02-16T12:54:00.000-05:00

I just figured out today that I haven't slept in 88 months!! I get more tired just thinking about it. He just won't/can't sleep at night. He gets up and comes into our room. Then he wants to have a conversation. I just can't converse at 3:00, but apparently, he can. Of course, he is getting more and more tired from all this. At the same time, he is getting MUCH more cranky. This leads to meltdown, meltdown, meltdown. What I wouldn't give for a full night's sleep.

Ah well, this too shall pass.

Peace out.

Visits with family

2007-02-09T10:28:00.000-05:00

Well, more of the same. We had some family visit us, and we all went out to lunch. Our son wanted them to just go away. This is family he absolutely loves, but for some reason... Anyway, after lunch, we went to Starbucks. He was just miserable. He refused to look at us, or even sit with us. Needless to say, our family felt really bad. He was just so mad at everyone. Maybe just too much stimulation - being out AND extra people. Who knows?

Night time continues to be difficult. He's getting better at staying in his room at night, but he just doesn't want to sleep. This, of course, leads to being very tired in the morning. So, it is now very difficult to get him ready for school.

Always something. As usual, we keep on keeping on. What else can we do?

Peace out.

And the beat goes on...

2007-01-31T14:49:00.000-05:00

Well, here we are again. Same story last night. Same story again this morning. Today he told us that he would get up in the morning, IF we would help him get to sleep at night. This kid should negociate in the Middle East. We are keeping up the good fight though. He has to understand that he can do things for himself. His self-esteem is just not good. When he accomplishes this, he can really be proud. And then we can all experience the beauty of a full night's sleep. Ahhhh, the bliss!!!

Peace out.

A little peak in...

2007-01-30T11:05:00.000-05:00

"He doesn't look autistic." "All kids are difficult." "I would just ...(fill in your parenting advise here)... That's what worked for MY kid."

These are the comments we deal with everyday. Yes - he's autistic. Yes - all kids are "difficult". And yes, I'm sure your parenting style works just fine with your kid.

This is our kid. His behaviour is difficult. Our problems are different. Our LIFE is different. What is the same is that we love our kid. He is our gift, our miracle, and our sunshine. And that is what we struggle to remember when it's too dark, and when our bodies and spirits are drained.

Here's the challenge of the week. He has never fallen asleep by himself. He has never slept through the night. Yeah, yeah, I know. Someone is going to say - "You should have let him cry it out when he was a baby". Would not have worked, even had we tried. This is the most persistant child EVER!!!

Anyway - back to the present. We are trying to get him to fall asleep by himself. Is it working? Can a 6 year old get himself to sleep? Not this one. He is up all night, jumping, singing, talking, etc. Is he tired? A little, but not as tired as we are. Eventually, at around midnight or so, he will come into our room, and sleep on his mattress on the floor by our bed. As if this were not bad enough (and it really is), he won't get up in the morning. Too sleepy. So, we have to spend the mornings figuring out ways to struggle him into his clothes so we can put him on the bus to school. Strangely, his behaviour at school has never been better. Maybe just too tired to argue? Sadly, by the time he gets home, he has plenty of energy to argue. Ah well, this too shall pass.

Onward and upward to see what tomorrow will bring. Peace out.