Answering A Question

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

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

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

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

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)

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

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

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”)

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?”)

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…