When losing feels like winning

Joe recently learned about betting.  Now he wants to bet us about everything.

"I'll bet you a quarter that our team wins tonight."
"I'll bet you a quarter that Diesel is sleeping on my chair again."

Thank goodness his favorite bet is a quarter!

Last Sunday after we dropped Alan off at camp, he says to me, "I'll bet you a quarter that Alan likes camp."  Oh man, you have no idea how much I wanted to lose this bet!

Drop off was ROUGH!

Dad stayed with Alan and I went to go sign him in and drop off medicines.  The medicine line was ridiculous.  150 special needs folks and only four nurses signing in medicines.  And they had to rewrite every single one.  We got there on the early end of drop off and I stood in line for at least 20 minutes and probably closer to 30.

Meanwhile Alan was crying like his heart was breaking.  He tried to get back in the car and DH locked him out of it.  Then they walked him over to look at the pool and when he expressed an interest in swimming, the counselor took him back to the cabin to put on trunks.  Then DH moves the car and hides.

Poor guy.  Later he told me that he had the harder job (I agree) but that it was just as well we split up like we did because he probably would have snapped and yelled at someone in the medicine line.

When we left Alan was only sniffling and there had been no headbutting or hitting.  His tears are killers though.  He just looks so freaking miserable.

Meanwhile all I can do is wonder what he is thinking.  Does he think we abandoned him?  Does he understand enough to know that we will come back and this isn't forever?

Monday night was so weird.  Joe was working.  DH gets home and says, "What do you want to do?  Go out for dinner?  See a movie?"  Wow.  No sitter required.  We almost had an empty nest.  We could get used to this.  Nope.  We won't.

Several times throughout the week we started and looked around frantically for Alan.  It was definitely weirdly quiet.  For a kid that is essentially non-verbal he is noisy!

It was a productive week.  I got Alan's room painted (I hate painting) and we took Joe out for steaks -- something he loves but of course Captain Picky won't touch.

Alan's one on one counselor was wonderful and communicated well with me -- we exchanged over 100 texts over the course of five days!  She even got him to shower (something we've been wanting for forever) and we were able to carry it over for the last two nights.  He still doesn't like them, but we are at least hopeful!

By Thursday, I was missing my Bug something fierce, though.

It turns out a good time was had by all.

After we got home last night, Joe comes in to see me.  "So did he have a good time at camp?"

Yes, he did and I was so happy to lose this bet that I paid him double!

Passing the torch (or maybe the plunger)

For the last several years we have primarily used one respite provider (Nikki) with another (Genni) as a backup.  Both girls are getting married the last Saturday of this June.  This is so unfair.  These girls actually have a life outside of Alan???

Working with Alan in First grade

Ms. Nikki has been part of Alan's life since kindergarten.  She was a para in his kindergarten and first grade classroom.  When we left that school we started utilizing her as a babysitter.  When a new, private school opened in his third grade year we strongly encouraged/recommended Ms. Nikki for the position of assistant teacher.  Unfortunately Alan's OCD really spiraled out of control in sixth grade and we had go to back to the public schools.  Ms. Nikki actually likes her job at the private school and is still there. 

When we first got him his iPad he wanted nothing to do with it.  In an effort to encourage him to use it, Ms. Nikki gave him some private lessons.  For so many things, she has always been there for us anytime we've asked.

But the time has come to pass the torch (or in our house, maybe it is the plunger) and we need to find some new folks to watch Alan. So we've been trying to interview/utilize a few new babysitters.  Of course, DH's first comment was "They need to be old and ugly so they don't go and get married on us."  Um, pretty sure that is NOT something we can ask when we phone interview these people.

Luckily one lady that we know and trust (she is Alan's companion on camp weekends) has come through for us and is planning to watch him so we can actually attend Nikki's wedding.  (No, we aren't planning to bring Joe.)  Even though Nikki has assured us she will still be available to watch Alan after she is married, we are realistic enough to realize that her availability will be less.  Gosh forbid she actually have a "cupcake" (her nickname for Alan) of her own.

Ms. Nikki supporting the bike so Alan could ride

But back to the screening process.  Even though Alan is rarely violent I did put that he could be "violent occasionally" in my "feeler" e-mails that I sent out to several people.  The one person that contacted me within 10 minutes thought it was funny that I put that in.  She said most people didn't tell you that up front.  Seriously?  Who wants to surprise a provider with that?

In any case we are supposed to meet the new person today.  Minutes before she was scheduled to arrive we were plunging one of the toilets while the other boy was in a different bathroom.  Maybe instead of asking about their autism experience we should ask them about how good they are with a plunger.  Sigh.

Close enough to walk

Where do I start?  It has been forever since I've blogged. 

Mainly I have spent the last month babysitting contractors working in our kitchen.  No, I don't have to sit there and watch them, but being on site helps prevent all sorts of problems and hiccups.  That said, today is supposed to be our final inspection and then the great kitchen project should be complete.  As soon as it gets painted, I plan to devote an entire blog post to the kitchen, but right now it is only functional, not pretty -- and I want pretty pictures. 

I am also having a bit of a "creativity crisis".  I haven't worked on my minis in ages, I haven't done any scrapbooking, I sure haven't done any cooking and I obviously haven't done much in the way of blogging.  I've been reading and playing computer games.  Ugh.

Weekend before last Joe and I went to DC.  Again, I feel like I should do an entire post just to highlight our trip.  It was a lot of fun, and I want to do it justice.  But that isn't what is on my mind this morning either.

Today, I am stressing over people that don't get it.

DH and I were talking this morning about an unexpected offer to watch Alan.  I won't shame this person by identification, but I think it is safe to say that the qualifications are not there.

While it is true that we don't have frequent meltdowns, we do make a lot of daily accommodations -- many unconsciously.  When we were forced to write out specific directions recently for a babysitter, it was amazing the number of things we did differently from each other and yet consistently the same.  Those routines are incredibly important to Alan.  Yes, they have to change sometimes, but we just do it.  So many things that we've learned over the years we do without agonizing over it. 

When someone thinks that we've got it under control or they could do what we do without much training, it is sort of insulting.  Many days feel like we are engaged in guerrilla warfare.  I am emotionally exhausted most nights.

I just wish people would cut me some slack when I don't do what everyone else does.  It isn't just a matter of finding a babysitter -- it is a matter of finding a reliable, adaptable, comfortable, trustworthy, flexible person who has some autism training. 

They sure aren't around every corner!

Supposed to be a happy occasion ....

Any fan of Monty Python will undoubtedly get the reference in the title, but for those of you who don't find bizarre British humor funny, here is the clip ...

This past weekend was my brother-in-law's stepson's wedding.  For all intents and purposes, I consider him my nephew that I only met 6 years ago, and I dearly love his new wife.  I have been looking forward to the wedding for some time now.  

For a little background, let me say that Joe went to his uncle's second marriage 6 years ago and had a fantastic time.  He danced up a storm and charmed the whole room.

This most recent wedding was slightly less successful.  Now I won't be telling you "who killed who" (after all, everyone did survive the event!) but it just wasn't as smooth. 

This was a camp weekend and we sent Alan so we wouldn't have to worry about a babysitter, but Joe elected not to work and to attend the wedding instead.  Hindsight being what it is, DH and I should have "encouraged" Joe to work.

The actual wedding was relatively short and the minister did a fabulous job.  Afterwards we went and hung out at my in-laws' house and that was also painless.  So what was the problem, you might ask?

The reception.

We are walking in and I said, "I'd really like to get a picture of the three of us."  (After all, how often does Joe wear a suit?!?!)  Joe's response?  "Don't you have enough pictures of me at home?"  Okay.  He was obviously in "a mood".  He finally agreed to take ONE picture.  Unfortunately, I put my arm around him.  I was told in no uncertain terms to NOT do that.

Sigh.

Then there was the food.  Joe is nowhere close to Alan when it comes to being a picky eater, but there are certain things he will not touch and one of them is cheese (unless it is Parmesan cheese or on a pizza).  Even though he loves potatoes (and has even been known to eat potatoes with some cheese hidden in their depths once or twice) he overheard my nieces discussing how there was cheese in the potatoes.  It wasn't happening.  Then there was the pasta.  The kid LOVES pasta and it was just Pasta Alfredo with broccoli.  He always eats "pasta with white sauce" at home and he likes broccoli (it is one of the few veggies that he usually likes) but oh, no, not combined.  Even when I ended up giving him my leftover roll at the end, he wiped the little dab of Alfredo sauce on his napkin before eating it.  Sigh.

At this point I left our table to go talk with some of DH's cousins.  DH did point out that maybe I was being difficult too.  Probably.  I have often said that the reason Joe and I spark so much is that we are so similar in personality but so different in tastes.

DH did ask Joe the next day why he even wanted to go when he seemed so determined to not have a good time.  Joe's response?  "Well it had been a while since I went to a wedding." 

And it will probably be a VERY long time before he goes to another one!!!!

So what's Alan been up to?

It may seem that I've been overly preoccupied with Joe lately.  In a big part, it has been because I see so much of him every day.  He is not working yet (please God, let that happen soon!) and therefore I think of him a lot.  My last few blogs were about Father's Day (and after all, Joe is the one who first made us parents) and the cats (and Joe was the one who really wanted both Misty and Diesel) and so I really haven't said much about Alan -- although I did arrange a funny collection of his climbing pictures on Facebook!

But Alan has actually been having a very good summer.  His first week was rough.  Despite having our back to school "conversation" that made me so happy, his first week of summer school had some difficult hellish afternoons.

A big part of it was just the different schedule.  He used to get home from school around 4 pm.  We eat early around here so he could have a snack and easily make it to dinner time.  But now he was getting home at 12:30.  Uh oh!  That didn't cut it.  He actually had to eat some healthy stuff or play or something to pass the time.  He spent the first four days sitting less than three feet away from me saying "medicine, medicine, medicine" until I thought I would lose it.

Unfortunately this picture wasn't zoomed.  This is how close he would sit to me -- ALL afternoon!

After Alan figured out the schedule, he has practically been my dream child.  He has been doing amazingly well at school, too.  He is really getting the hang of his school issued iPad with the communication program Go Talk Now.

When he wanted to watch his videos, he used to sit in front of the TV holding the DVD box in his hand and just bellow "downstairs" (when he was upstairs) and "blue ball" (when he was in the basement -- long story!)  Of course he never (or rarely) watched TV on the main floor.  Figures.

After a little work he now goes and gets his talker (what we call the school issued iPad) and proceeds to press the buttons so that he tells us what video he wants to watch -- and NO bellowing.  He is even doing this for the babysitter and when we had company over.  The best was when he tracked down both of us (on different occasions) when we were nowhere near the talker and handed it to us.  Success!!!!

And this is how he gets out of bed in the morning.

For those that do not know, Alan has apraxia (an oral motor planning problem) so that when he wants to say something, that isn't always what comes out of his mouth.  I knew this, but it has been sort of awe-inspiring to see the way the GTN has improved his ability to communicate and really cut down on the screaming.

Some very clear examples are the time he verbally asked for a cherry pop-tart but typed out blueberry on the talker.  I gave him the blueberry and he took it without a fuss.  If he had truly wanted the cherry, this would have been a time to pitch a fit, but he happily accepted the blueberry.

And just this afternoon he asked for The Star of Christmas DVD (a Veggie Tales movie) verbally, but I waited until he had typed in on the talker and what he really wanted to watch was Thomas' Ultimate Christmas.  So here were two very obvious times that would have caused stress in the house if we had listened to what he said but by using the talker, we bypassed the difficulty.

Now we just have to move him into abstract concepts.  OK, that might be a bit down the road.

The Debate

Sometimes I feel like I have both sides of a debate team in my head.  Lest you think I am schizophrenic (which is a possibility says team B) I will explain what I mean.

Team A:  Life is so much tougher when you have autistic kids.  There are endless meetings with schools, teachers, doctors and therapists.
Team B: Have you talked to your friends with typical kids?  How many games, practices and club meetings do they have in average week?
Team A: 1   Team B: 1

Team A:  When I take my child to the pool, they never play with the other kids.
Team B:  Have you seen how annoying other kids can be?  Are you really sad that they aren't playing with those jerks?
Team A: 1   Team B: 2

Team A:  Every time I tell someone my child has autism, they look at me with pity.
Team B:  If it wasn't important why did you bring it up?
Team A: 2   Team B: 3


Team A:  What is my 18 year old going to do now that he has graduated?  He doesn't have a job and he isn't ready to go away to college.
Team B:  Look at all these parents whose 18 year old kids are going to college.  Do you think any of them are "ready"?  Do you remember how much trouble you got into at 18?  Maybe it isn't so bad having him still at home.
Team A: 2   Team B: 4

Team A:  We still have to get a babysitter respite provider every time we want to go out for a date and we have two teenagers.
Team B:  Would you want to leave two "typical" teenage boys alone in a house when you go out?  How many girls could they get pregnant and how much liquor could they consume?
Team A: 2   Team B: 5

Team A:  My kids are rarely invited to birthday parties and they've never been on a sleepover.
Team B:  Think of all the money you haven't had to spend on other kids' birthday gifts, all the time and money that you haven't had to spend planning parties and all the useless things you haven't been given at your own kids' parties.  You also haven't had to host any other kids.
Team A: 2   Team B: 6

Team A:  Everyone has a story about someone they know who was "cured" by doing something (usually bizarre).
Team B:  Yep, they do.
Team A: 3   Team B: 6

Team A:  My boys do not interact with each other very much.
Team B:  You've heard stories from the hubby about how teenage boys "interact" -- is it really so bad that older one isn't giving the neighbor hints on the best way to beat up his little brother?
Team A: 3   Team B: 7

Team A:  We aren't able to go to many family celebrations because of Alan climbing on things and getting into trouble.
Team B:  And haven't you also used that as an excuse to get out of things you didn't want to do?
Team A: 3   Team B: 8

Team A:  We haven't taken Alan to church since he was 3 and therefore have to go to two separate services every weekend.
Team B:  OK, that is a pain in the butt no two ways about it.
Team A: 4   Team B: 8

Team A:  There is so much conflict in the autism world.  The vaccination debate, the GF/CF folks, acceptance vs. awareness, is Autism Speaks the anti-Christ, should we call them people with autism or autistics ... I can go on and on.
Team B:  Parenting debates exist everywhere.  Do you have to defend whether or not you breastfed, let your child sleep in your bed or made him cry it out, did attachment parenting, or have ever spanked?
Team A:  Autism parents don't care about little things like that.
Team A: 4   Team B: 9

Hmm, maybe I'll keep my strange little family and our bizarre life.  After all, it could be worse.  I could have two typical kids.

Camp Weekend

Before last November, DH and I could count on one hand the number of nights we had spent alone together without the boys.  As I stated in one of my earlier blogs, we do not have grandparents that are able/willing to watch the boys.  We are lucky enough that my sister who lives nearby will take them occasionally, but realistically, they are a lot for any one person to handle so we do that very sparingly. 

Then in the summer of 2011 a flyer came for a special needs camp.  Figuring that Alan wouldn't like it and they wouldn't like Alan, we signed Joe up for the camp.  It is two weekends in the fall and two weekends again in the spring.  Joe was very nervous about attending, but ended up really enjoying camp.  As a time to be away from mom and dad and deal with other strangers to get his basic wants and needs met, it was a huge growth opportunity for Joe and probably a big contributor to his massive emotional growth spurt of the last year.

One of the counselors who knew about Alan asked me why we hadn't signed him up.  When I explained that I thought he was a little much for the camp, she told me that the camp was really designed for kids like him.  Huh.  Really Joe is the highest functioning kid there by far.  So when the flyer came this past summer I had all the paperwork and the deposit check filled out and in the return mail.  I was so excited.  I really didn't think Alan would do well, but I was so ready to try.

Then we found out that there wasn't enough funding and no new campers were going to be added this year.  Well sigh.  The first weekend came, Joe went and Alan stayed home.  It was still good for Joe to get some independence so we weren't going to deny him the weekend away.  Then the coordinator contacted us again and said they got additional funding and now Alan could do the second camp of the fall.  We tried to take him to the intake meeting and he refused to get out of the car to come into the building.  NOT a good sign.  What to do, what to do???

DH and I came up with an elaborate plan.  Joe and I would drive to the camp with all the supplies for both boys stopping on the way for French fries and a soda which we would bring to the camp.  DH would follow bringing Alan.  DH got there and parked next to our van.  Alan saw it and said "Get in van" (we've done enough car swaps in parking lots that this is a relatively familiar routine) and hopped out of DH's car.  DH promptly locks his car and I already had the van locked.  Now there is no place to go but into the camp building.  We settled Alan down with the fries and his soda and his counselor and ran like cowards!  OK, maybe we didn't run like cowards, but that is sort of what it felt like.

We went home and waited for the "come get this kid -- he is driving everyone crazy" call that ... never came!  Late Saturday afternoon we got a text with a picture and Alan was happily climbing a pine tree on the camp grounds.  Joe wasn't being forced to watch over his brother and everyone there was happy.  DH and I were ecstatic!!!!

So Alan's second weekend was this past weekend.  We packed Thursday night and Alan didn't seem to be paying attention but then his teacher e-mailed us on Friday to tell us that he was having a bad day after a great week.  Not good.  Had he seen the packing after all and known what it meant and was determined not to go?  We debated endlessly what would happen if we couldn't get him out of the car or something similar. 

Friday after school Joe was doing his usual "I'm excited but I'm not going to admit it" pre-camp thing and Alan seemed oblivious.  Moment of truth time.  DH lies down in bed next to Alan where he is watching his iPad and tells him "you are going to camp this weekend" to which Alan replies "No!"  DH tries a few more times with the same results.  OH-Kay!  Then DH says, "Remember you get French fries when we go to camp."  No more No's.  Hmmm. 

We even drove two cars again but we also hoped that since the first weekend was so successful that this one would be even better and luckily it was.  Alan actually started saying "Get in car!" to us this time. For a little while we weren't sure if he was asking to get in the car himself or telling us, but since he sat quietly while we got in our cars and left, we figured it was the latter.  The counselor informed us that there was much less yelling this weekend since he knew the routine and he seemed to have a great time. 

Now our only concern is that Joe doesn't really need a "special needs" camp anymore.  He even got an award that said "Junior Counselor" this past weekend because he led the cake baking activity and according to his counselor he was great about making sure everyone got to participate and understood their job.  Hmmm, maybe next year they will hire him on as a counselor and we will still get our weekends??

Date Nights and Privacy

Lest you get confused by the title, I do not plan to give private details about our date night.  This blog covers two separate topics.

Date Night:
Tonight is our monthly date night.  Thank goodness.  I've actually had a pretty good month other than a root canal but just getting out with the hubby is such a treat.

Most times we go to a movie but as we are a bit on movie overload we are going to go out to dinner and then either go and listen to some music or watch a game on TV.  But it really doesn't matter what we do, what is important is that we make time to be together.  It probably doesn't happen naturally in a typical family either.  But some months we really have to work to make sure we get a night to ourselves. 

As I said in What Might Have Been, DH and I have a pretty good relationship.  I would say it is 50/50 but that isn't really the case.  Some days it is 60/40 favoring me and some days it is 70/30 favoring him or .... well, you get the idea.  That is how we make it work.  At least our boys are not involved in a lot of extracurricular activities.  Most evenings after the boys are in bed (and thank goodness they are good sleepers!!!) are for just the two of us.  That said, there is still something wonderful about going out and not worrying about whose turn it is to bathe Alan or who needs to cut up his apple or stop him from jumping off our bed and shaking the whole floor or .... well, once again, you get the idea.

Tonight we are planning to go out, have a little fun and pretend we don't have two autistic kids.  Tell me you aren't jealous!!

Privacy:
Last night we watched the movie Julie and Julia.  For those who do not know the plot line, it is based on the true story of Julie Powell who decided to write a blog while cooking through Julia Child's entire cookbook in a year.  I have started my blog since I last saw the movie, so it was especially entertaining to watch the interactions between Julie and her husband Eric.  Probably my favorite exchange:

Eric:  I am not a saint.
Julie:  Oh yes you are!
Eric:  No, I'm not!  And it makes me feel like an asshole every time you say it.  (pause)  And do NOT write about this in your blog!

DH frequently tells me "don't put this on Facebook!"  Usually it is when he is sick or something is up with the family but I don't necessarily want everyone knowing all our dirty laundry either.  I am a fairly open and sharing person, but some things about our relationship are not for the blog or Facebook or Google + ( I haven't started tweeting yet!)  Usually I try to share what I think is funny about our life or what has or hasn't worked with the boys in an effort to help other people.  The rest is just voyeurism.  

So if you are looking for a reality TV look into our life, you probably won't find it.  It doesn't mean I don't like sharing or having you share back.  I apparently actually have a few readers even if I don't have any followers yet!  Happy Saturday, folks!

My Pet Gorilla

When I gripe about Alan being home all I hear is "Enjoy it!  They grow up so fast!"  Well, I have some news for you parents of "typical" kids -- he doesn't!  Having Alan home is a lot like having a pet gorilla.  He is somewhat trainable, communicates basic wants and needs but weighs over 150 lbs and is hard to take in public.  

Don't get me wrong, I love my sons very much ... but they are EXHAUSTING!  My favorite day of the year is the first day of school.  When I think about the fact that Alan may never leave home, I want to cry!  When a baby is born you have so many hopes and dreams for him or her.  Those don't just vanish when you get a diagnosis!  

I would love to have family movie nights, but there are no movies that all four of us will watch.

I would love to be able to go to a restaurant and sit down with both my boys and relax and enjoy someone waiting on me.  Any idea what a restaurant is like with a pet gorilla?  We have to be ready to order as soon as the waiter first comes to the table because Alan can only wait so long.  We have to eat relatively quickly because frequently one of us has to take him out to the car while the other one stays behind with Joe and pays.

I would love for family vacations at the beach to be the way they were pre-kids -- lie in the sun, read a book, maybe take a nap, play in the waves.  Any ideas what vacation is like with my pet gorilla?  Last vacation he tried to climb off our third floor balcony on to the one below.  He gets in the ocean and just starts swimming for the horizon.  Yes, I am thrilled he is a good swimmer, but that doesn't mean I trust him to know when he is getting tired and come back so one of us has to swim out with him and convince him to come back in to the shallow water.  That fun task usually falls to DH because he is taller than me.  Forget flying with a pet gorilla -- what if he freaks out on the plane?  That means any trip must be within reasonable driving distance.

I already described what holidays are like with a pet gorilla.  But what about just getting together with friends?  We have some very good friends that do not have any children but do have dogs.  We usually cannot talk Joe into going over there because of the dogs.  On the other hand we almost never are invited to anyone else's house.  Nobody wants a pet gorilla to visit!

Many couples I know go away for weekends and have grandma and grandpa come and stay.  Uh, no.  Not too many 70-80 year olds can handle a pet gorilla!

What about going to church together?  Nope.  The last time all four of us went was Christmas of 1999.  That is a lot of separate services.

For Joe's graduation, for my niece's wedding, for an aunt's funeral ... you name it, we need a babysitter because my pet gorilla can not attend.  Heck, we have to get a babysitter for our monthly date nights.  We have two teenagers!  We should be able to just go out for our anniversary (or whatever) and leave the boys at home, but we can't.  So don't tell me that I should enjoy this time.  I love my boys but caring for a pet gorilla is very tiring and I am truly looking forward to the day he goes back to school!

Holidays with a Twist

The holidays can be so stressful.  For a typical family, you have to deal with buying and wrapping gifts, teacher gifts, decorating, baking, scheduling holiday parties and so much more.  In our family, we have all that ... with a twist.

What do you buy for a non-verbal 14 year old who loves to climb and watch videos -- but rarely new videos?  He loves opening presents, but rarely gets excited by their contents.  What do you buy for an 18 year old who when you ask will give you half a dozen videos but that is about it?  He has little concept of the value of money.  We have been attempting to teach that over the last year with a debit card and having him pay for his own gas but until you are putting money back into the account, where is the lesson?  One year when we asked Joe what he wanted for Christmas he told us "a flashlight".  What else?  "I really want a flashlight."  OH - KAY!  To make things more complicated, we have both sets of grandparents still alive (don't get me wrong, that is a nice complication!) and several aunts and uncles who spend more than $5-10 for the kids.  They want ideas.  Every year, I scramble to come up with something (anything!) creative for them to get on Christmas and rarely do I find anything.  This is getting even tougher as Alan gets older.  We got him an iPad last year for his birthday so while we might appreciate the iTunes gift cards and he might at a later date appreciate the movies and apps we put on it, he does NOT get into opening gift cards.  Sigh.

Teacher gifts are even more fun.  When you have a teacher per kid you can do something pretty nice for them.  One year I had over 30 teachers for my 2 children!!!  This year I have one awesome teacher, 4 paraprofessionals in his class, a class interpreter (?), an ABA coordinator, SLP, OT, PT, Music teacher, Art teacher, PE teacher, computer teacher, favorite babysitter, two bus drivers (he is on a different route each way) and two bus assistants.  Gee whiz.  Just giving each of them $5 adds up pretty quick.  In the past I have made soap, made candles, given them cookies/soup in a jar, made autism awareness scarves and probably a lot of other things I have forgotten.  This year I decided to make a photo collage of goofy Alan pictures (climbing on the stairs, swingset, wedged on the top shelf of his closet, stairdiving) and gave them that on a thank you letter.  I had several of the people tell me it was their favorite Christmas present ever!  It obviously won't work for everyone, but it was a fun idea and I wanted to share it.

Decorating is not that different for us.  The nativity set still gets played with but I suspect that happens in many houses where there are young children.  We get no help from Alan decorating but Joe is a big help so I guess that one evens out.  The same with cooking and baking.  As long as I can keep Alan occupied with a video or outside, I can do my cooking and baking.  Of course I still have to go outside with Alan during snowfalls to insure that he doesn't stop in the middle of the hill and sit there or run over some younger kid so I dread snow days during December!

Scheduling the holidays is perhaps the worst.  Anything where "the whole family is invited" are a disaster.  If we take Alan anywhere, one of us has to be watching him constantly.  He likes to go "exploring" and loves beds, stairs, balconies and railings.  Having a 150+ lb kid jump off an upper bunk during a party is guaranteed to make people jump!  God forbid anyone have a dog, because then Joe is going nuts with his fear of dogs -- even little ones, even locked up ones.  Of course if we don't take one or both of the boys, we have to get someone to watch them.  Special needs babysitters are expensive!  Some of that is just because it is usually an adult (not some neighborhood kid) and some of it is because I believe in paying them well when I find one I like!  Adults tend to have their own lives so scheduling their availability is not always the simplest thing either.  Many times we have had to split up -- DH takes Joe to his side of the family and I take Joe to my side or DH goes stag to work parties.  Of course, sometimes this causes problems too.  My mom asked me one time if DH didn't like them and people at his work probably think I am a snob.  Such is life with the spectrum.

We end up hosting a LOT of holidays.  This is actually easier on us as we don't have to schedule babysitters or worry about trying to keep Alan out of beds or reassure Joe that the dog is really nice and won't bother him other than to smell him.  Sometimes it gets a bit expensive always buying the food and the drinks, but it probably saves a small fortune in babysitter costs so maybe it is even.  The holidays with a twist ...

The "Little People" aren't so little!

Today the bus driver was about 25 minutes late.  Now for a typical kid, this would not be a huge deal.  They would hang out, maybe read or watch a video or play a game or just chat with Mom (OK, I can dream, right?)  But for Alan, we have to be waiting outside for the bus.  That is what we have always done so that is what we must always do.  In fairness to Alan, I started this because the kid refuses to wear his shoes in the house.  If we only had to get a jacket on and race out the door, we could stay in until the last minute.  But since we have to put on socks, shoes, jacket and bus harness and usually use the restroom before heading outside, this is a little much to do once the bus has been spotted.  And routines are very important to kids on the autism spectrum!

So this morning it was about 35 degrees F outside and Alan likes to sit on the garage floor.  I have tried to provide him with a chair, but he always sits on the floor.  This child is a bit hypo-sensitive to begin with so it wasn't like he was complaining about the cold but he was getting impatient.  Every 30 seconds or so I would get "Bus?  Huh?"  If it weren't so annoying, it would have been fairly funny.  So I finally called the transportation department and they check on the bus and it is less than 5 minutes away by the time I check.  Of course, when the bus driver comes she says she made a mistake and drove past our street (hey, it happens) but she called the transportation department to tell them she is coming back for Alan.  Now why did the transportation department act like they had no idea whatsoever why the bus might be late when they talked to me?  Is it really that hard to communicate?  I guess it is.

Normally I try to be very supportive of all the "Little People" in my sons' lives.  After all, when one of them does not do his or her job, it is usually fairly obvious.  I always try to give nice Christmas presents and end of the year gifts to all the many people that help out my boys on a regular basis.  I have had people ask me why I tip the babysitter so much.  Frankly, I want these people to like helping the boys because when they like their job, it makes my life so much easier.