Thanksgiving Rollercoaster

I know that holidays are usually a series of ups and downs.  But I wasn’t prepared for the emotional rollercoaster I went through yesterday… and some of the stories aren’t even mine!

First emotion: anxiety.

Start the day off by getting up and getting cooking… I tried a new recipe, which always brings anxiety.  I made a sweet potato, bacon and apple “hash” as a side dish for our family dinner.  Since I was cooking for 8 adults and 2 kids (who might or might not eat it), I needed to make 2 batches.  Add to this that both boys woke up while I was making the 1st batch and so I was trying to rush… well let’s just say that I moved in a bubble of anxiety until the 2nd batch was done, everything was tasted (yummy by the way, let me know if you want the link to the recipe) and I could get the boys up and feed them breakfast.

Next emotion: relief.

I went in and got Monkey up, changed his diaper but left him in jammies and carried him into Bubba’s room.  Bubba was sitting up in his bed and gave me his normal scripted greeting “good morning”.  I put Monkey on the floor and told Bubba “Happy Thanksgiving”, which he repeated back.

Next emotion: distress/anxiety.

Then I realized that there were dried spots of bright yellow *something* on Bub’s jammies and pillow… Hmmm, did he spit up something?  I asked him if he was ok and he started to cry.  Then he started to cough.  Then he started to puke.  Since he already needed new sheets and jammies, I just layed him down and let him finish.

Now we’re at: sad. oh, and still anxious.

When he’s done, I scoop him up, wake up Big A so he can deal with Monkey, and get Bubba all cleaned up and dressed.  I fed him cheerios, water and bananas for breakfast (which he barely ate).

Now I’m: worried.

Bubs seemed to be acting fine.  Monkey seemed fine.  Everyone was fine, so we decided to proceed with Thanksgiving Day plans.  We had somewhat of a lazy morning, with plans to leave to go to my parents’ house at noonish.

Ok, we’re at: calm.

I went on facebook during the morning and found out that a dear friend of mine was not spending the day with either of her teenage sons (the 18 year old is away in the National Guard and the 16 year old was with his dad for the day) for the first time.

Because of this, back to: sad.  Very very sad.

I messaged her and made sure she wasn’t spending the day alone (she messaged back and said she had plans with other family).

Back to: relief.

Get everybody ready, pack up the car, leave the house for the trip to my parents’ house (we’ll call my mom Nana and my dad PopPop).

Wow, I’m actually: Happy!

Nice hour+ drive, singing with the boys, chatting with Big A, working on a needlepoint project.

Feeling: pleased, content.

3 miles away from my parents’ house, we stop for gas.  While waiting, Bubba started to act distressed and cry a little bit.

Here we go: concerned.

We get back on the road, and Bubs is still whining in the back seat.  I keep turning around to look at him, and he’s looking like he doesn’t feel good.  Big A is driving faster and faster, but we’re on a road with lots of stoplights so there’s only so much he can do.  About a mile away from my parents’ house, Bubba starts puking.  Big A at first starts to slam on the brakes, but then realizes there’s really nothing we can do since we’re on a very busy road and will arrive at my parents’ house in about 5 minutes.

And we’ve got: anxiety, fear (what if he starts choking???), sympathy, helplessness, disappointment, etc.

What a long 5 minutes!  I twist around and hold Bub’s hand as he continues to throw up all over himself.  We arrive at my parents’ house and explode from the car, Big A running inside to get help, me openning Bub’s door but not really wanting to touch him until I have materials to clean him up.  He’s pale and crying slightly, and I think he’s a little scared.  PopPop comes out to help and takes Monkey inside.  I clean Bubba off as best I can and take him inside to change him and finally be able to hold and comfort him.  Big A takes on the task of cleaning off the car seat.  After about a half an hour things start to calm down and somebody pours me a glass of wine.

Ok, starting to feel: relief, calm.

My Uncle B is there, I only get to see him once or twice a year.  Big A’s parents (we’ll call them Grandma and Grandpa) and his Aunt P join us.  I love family get togethers!  Both boys are playing nicely, giving hugs when asked, Bubba is responding to requests to relay information he’s learned at school and sing songs, which are really stinkin cute.

Dare I say it?  I’m at: happy, love, having fun!

Dinner goes well, Monkey takes a nap and gets up hungry, the boys tag team eating in the high chair.  Bubba has a bunch of saltine crackers and a bowl of applesauce, drinks a cup of water, and politely says “Mommy, I’ma all done”.  Everyone is charmed.  We all visit for a bit, a few people drift off to sleep in their chairs for a minute or two, both boys go back to playing nicely.

Ahhhh: calm, content.

We decide we have to go, Big A’s family leave, we pack up the car and head out.  Big A and I laugh at people we see camped out in front of Best Buy, sing our versions of different Christmas carols (we’ve changed some of the words to make them silly), talk about some of the topics that were discussed during the family visit.

Loving this: content, festive, closeness with Big A.

My phone lights up, it’s a text from one of my best friends Ampy.  I open it expecting a Thanksgiving greeting.  We just enjoyed a pedicure date Wednesday afternoon, so I knew what her Thanksgiving plans were.  But what I see on my phone’s screen is the news that her grandma passed away Thanksgiving morning.

Bam: heartbreak.

My heart in my throat, I text back and ask as gently as I can (via text) if she was there when grandma passed.  Because I knew that the plan had been for she and her parents to spend the morning with grandma at the nursing home.  The answer I get back: they were 20 minutes too late to say goodbye.

Devestation.  More heartbreak.

I text back as many loving words as I can think to convey, knowing there’s really nothing I can say.  I think to my own grandmother in her own nursing home, and how I allowed Thanksgiving to pass without seeing her.

Sadness.  Guilt.  More guilt.

We get home, unload from the car (both boys slept the final 30 minutes of the drive) and spend an hour just laying around watching TV.  I’m trying not to think too much so I go on facebook to see how everyone else’s Thanksgiving went.  I’m realizing as I read posts of some of my autism mama friends that autism really wasn’t a factor in our day.  We had no meltdowns, very little stimming, mostly scripted but still appropriate talk.

Wow: thankful.  Hopeful.

I scroll through the facebook feed and see a picture of my friend who has the 2 teenage sons.  In the picture she’s hugging the 18 year old.  Wait, WHAT???  I click onto her facebook page and read that he flew home and surprised her with a visit!

ELATION!  I was so happy I was crying.  For her!

Whew!  I was done.  Spent.  We put the kids to bed, I got into my jammies, made a half-hearted attempt to work on my needlepoint for a few more minutes, then gave up.  I went to bed and fell asleep listening to the TV, playing one of the Friends Thanksgiving episodes.

How the heck do you sum up a day like that?  You got it: Rollercoaster!

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Sisee’s Theory of Autism

First some backstory:  I used to teach autistic kiddos.  I worked at a school for severly autistic individuals.  Their mission statement was “To prevent the institutionalization of children diagnosed with autism” or something along those lines.  My college roommate and I were hired together and basically started this school’s early childhood program.  I taught children aged 3-8, in fact I did intakes on kids before they turned 3.  My very first intake (my beloved “L.F.”) started the day he turned 3.  I taught at that school for 3 years, then moved on briefly to another school (whole other story there), then spent a year at yet another school.  So I have just over 4 years of “in the trenches” experience as an early childhood special education teacher specializing in autism.

All of this experience happened 10 years ago.  And wow, the things that have been discovered about autism since then.  The myths that have been disproven, the practices that have been developed, changed, perfected.  So today’s world of autism is hardly the one I knew back then… however…

When I was working at the first school, I developed what I called “Sisee’s Theory of Autism” after having many discussions with my fellow teachers about what we thought caused our students’ autism.  Back then, with all of the confidence that came with being a teacher but not a mom, I was completely sure I was right.  And while I now know I was wrong, wrong, WRONG about a lot of things, I still think my theory is bang on.  Even now that I’m the mom of a kiddo with autism.

So here ya go:

Sisee’s Theory of Autism

Say 1000 kids are conceived with a genetic pre-disposition for autism.  What I mean is, their brains are shaped in a certain way, the dna is primed, physically it’s all there from the moment egg meets sperm.  BUT… something is missing.  There needs to be a chemical reaction within the brain/dna/etc for development to take the “turn” towards autism.  The substance that causes that chemical reaction is a substance found in the environment.  BUT… for each one of those 1000 kids, there is a different environmental component.  (I’m going with 1000 here to make the numbers easy to digest.  But it could be 10 or it could be over a billion, I’ll leave that up to future scientists to figure out.  For now just follow the concept!)  So out of these 1000 kids, say 50 of them have mothers that come in contact with their environmental component while pregnant.  So those 50 kiddos are born already displaying signs of autism.  Say another 50 are exposed to their environmental component while in the hospital after being born.  So those 50 kiddos are autistic from newborn on.  Say another 50 are exposed to their environmental component before their 1st birthday.  Another 50 before their 2nd birthday…  But say the receptors for these environmental components die, or fade away, or are covered up as the brain gets older/matures/grows.  So the remaining 800 kiddos, while born predisposed to autism, never have it manifested because they didn’t receive exposure to their personal environmental trigger before the receptors were “disengaged” (for lack of a better term).  Is anyone following me so far?  No?  I’ll use an analogy:

You are walking down the street through a residential neighborhood and you find a garage door openner on the sidewalk.  There is no identification on it.  How do you find which house it belongs to?  Every house you can see has a garage with a closed door.  So you push the button repeatedly as you walk up and down the street.  Eventually one of the doors responds and opens.  You just linked that door to it’s openner…  make sense?  The houses all had garage doors = kids born with genetic predisposition for autism.  Garage door openner = environmental trigger causing a reaction.

Ok, so my point to all of this: first off no I’m not saying that all children are born with a genetic predisposition for autism.  But I think science will find that the number is significant.  And there could be hundreds, thousands, etc. of environmental triggers.  That part will probably be harder to prove.  But I believe that it could be so many things… mercury in tuna that a pregnant mother eats, gasses emitted from the carpet in the infant room at a daycare center, possibly a chemical contained in an MMR shot a child receives at 15 months old (yes I went there…).  Do I believe that eating tuna fish causes autism??? No.  Do I believe children in daycare are at a higher risk??? No.  Do I think that shots cause autism??? NO.  I think it’s waaaaaay more complicated than that.  I do believe that each child diagnosed with autism has been exposed to their personal environmental trigger, and that environmental trigger caused a chemical reaction in their brain, and from that moment on their brain began developing differently.  There is no way (at this point) to predict what the environmental triggers may be, but there’s also no reason to discount claims that certain substances might have had a hand in children suddenly displaying symptoms of autism.

For us: I believe that whatever Bubba’s trigger was, I was exposed to it while I was pregnant with him.  I think that he was born this way, and I love every bit of him just the way he is.  So far it seems that Monkey hasn’t run into his environmental trigger, but I believe it’s still a possibility given his age, so I’m keeping a close eye on him.  There’s no way of predicting what his trigger might be, so he’s current on all of his vaccinations and he doesn’t live in a bubble.  I’ll leave the predicting part up to the scientists.

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The Happiest Place on Earth (or… preparing for battle)

I grew up a Disney kid.  I loved fairy tales, and in the 70’s/80’s Disney was pretty much the only visual source for fairy tales (besides being the BEST source anyway!!).  I remember going to see various movies with my parents, and I often acted out the story lines, read the books, and in general loved all things Disney.  Unfortunately I don’t remember a whole lot from my one magical trip to Walt Disney World when I was 7 (there are reasons that my mind has blocked out parts of my childhood memories, and unfortunately my Disney trip was partially a part of that) but what I do remember is wonderful.

I’ve been to Disney a few times as an adult, and it just keeps getting better and better for me.  I’d honestly go at least once a year if we could afford it.  So of course when Bubs started to fall in love with The Mouse when he was just 9 months old, it was a dream come true for me.  I began envisioning taking him to Disney multiple times throughout his childhood, what fun we’d have there, the wonderful family memories we would cherish through out the years…

Then came autism.

As I watched Bubs enjoy watching Mickey Mouse Clubhouse, I cried inside knowing how hard a trip to Disney would now be.  As I watched Bubs cuddle his Mickey in his sleep, I mourned the idea that he would be able to navigate an over stimulating environment like Disney World.

But then Monkey fell in love.  With Mickey.  And I realized that to give in to Bubba’s autism would be to deny Monkey’s opportunity to visit his idol in the one place he should be visited.  And then I realized that to give in to Bubba’s autism would be GIVING IN.  Nope, not gonna happen.  So I put on my mouse ears and started to do some research.

I read blogs about families that have kiddos with autism and their trips to Disney.  I found websites with advice.  And I discovered Disney’s committment to these kids.  To our kids.  To my Bubba.  Disney has what is called a Guest Assistance Card, and we can get it for our family because of Bubs.  While I have yet to experience it, I’ve heard that it will make it possible for Bubs to have an easier experience waiting to ride the magical rides.  I know he will still have to deal with waiting, I know not to expect to step right on any ride.  But with the GAC we will be able to minimize waiting in a stressful environment, and we will be able to maintain the security of a stroller in ways we couldn’t without it.  I’ve read up on suggestions about which rides to target and which rides to avoid.  I’m working on thinking through the whole experience and how to make it successful for Bubs, so that our whole family can enjoy a trip together.

Big A and I talked it over extensively.  See, we’re still hoping (please God) to have another baby.  Soon.  We’ve always envisioned our family with 3 kiddos, all close in age.  So we’ve looked at our life and looked at our finances, and come to the conclusion that we have a window of opportunity.  To take Bubs and Monkey while they still worship The Mouse.  Before they’ve moved on to boy stuff like Transformers and superheroes.  While we have one kid per adult.  Big A put in that he wanted to take the boys during the Christmas season, because Christmas at Disney is perfect.  We love the winter holidays above all else, and Disney is awash with holiday spirit.  We experienced it just over 3 years ago… more like 3 years and 9 months ago (so if Bubs recently turned 3… anyone following what I’m saying here? *grin*).  So we priced it out… we decided… we booked it… and we’re going!  4 nights 5 days in December.

So now… I prepare for battle.  I want Bubs to enjoy each and every minute of being there, so I have to figure out how to prepare him for it.  He cannot possibly understand a description of this trip, so I need to build into his life things that will happen during the trip, so that when they do happen they will already be familiar.  Step 1: Christmas music.  Bubs LOVES music and singing, and sings familiar songs to himself to help himself regulate.  So we are learning Christmas songs.  We are playing Christmas music.  We are watching movies that contain Christmas music all. the. time. (good thing I love Christmas music and movies, or I’d be losing my mind and it’s only November 8th.)  He’s already learned Jingle Bells and we’re working on clarity.  Step 2: Airplane ride.  I asked Nana to give him a Little People airplane for his birthday so that we can role play all aspects of going on an airplane (bonus: teaching him dramatic play).  I’m now working simultaneously on… Step 3: Social stories about the airplane ride and staying in the hotel.  I’ll have the support of Bub’s school staff helping me with these.  Step 4: Picture Schedule to support waiting for a ride and then riding a ride.  Still tweaking how I’m going to do this, as even the word “wait” causes Bubs a lot of anxiety.  Got a song going at home and at school about waiting for our turn, but right now it’s rocky at best.  Step 5 will be getting familiar with Santa, snowmen, reindeer, etc… the icons of Christmas.  Luckily Bubba loves to identify things, so the vocabulary will be there.  We should have a couple of experiences meeting Santa prior to our trip, so that hump will be already crossed.  And I can’t forget preparing Bubs and Monkey to meet the most important figure of the trip: The Mouse.  We have our good friend Skates (the Chicago Wolves hockey team’s mascot) to thank for this one.  We see Skates up close and personal every few weeks (if not more often) when we go to hockey games, so my boys are used to giving hugs and high-fives to a rather scary-looking 7 foot tall wolf.  Mickey should be no problem.

A note to you, my dear reader:  Please, please, PLEASE comment and leave me suggestions!  This is something that I cannot get enough input on, especially if you have experience taking kiddos to Disney.  Oh, and by the way thank you for slogging through my thoughts and experiences.  You are my therapy, don’tcha know?  And if you like what you read, tell a friend.  If you think what I’m going through could help someone else, tell a friend.  If you think what a friend is going through could help me, tell a friend.  I’m trying to build my own autism mama village…

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Parenting FAIL

So today I thought it would be a fun sensory activity for both my boys to play with shaving cream.  But not just play with it.  I put both of them in the dry bathtub, naked, and squirted in over 1/2 of a can of shaving cream.  Fun, right?  Well, Bubs enjoyed every minute of it.  Monkey was just kind of like “ok, why are we doing this?”  I showed them how to scoop up the shaving cream and smear it on themselves, the tub, the wall, etc.  We put it between their toes and they laughed.  We put it in their hair and they laughed harder.  But pretty much after 5 minutes Monkey was done (he tasted it and of course decided nope, not yummy, so done now!) and Bubs lasted about 30 seconds longer.

So my plan was to turn on the hand held shower and just rinse them off.  Easy peasy, right?  WRONG!!!  Monkey started screaming the moment I turned on the water (he was closest to the faucet) and Bubs started in the moment I turned on the hand held shower… this was before water even touched either of them.  The second the shower touched Monkey he went into absolute hysterics, and Bub’s screams went up a notch in response.  Then when the water hit Bub’s feet, he went into full blown melt down, like I’ve never seen him before.  He was so distressed he was kicking and flailing his arm, in close proximity to his little brother.  I kept telling them it’s ok, it’s ok, it’s ok.  I kept as calm as I could, and kept trying to rinse them off.  But both boys were losing. their. minds.  Oh, yeah, and we’re in the bathroom with the door closed, so it’s all echo-y and loud.  I finally turned off the shower and used a cup to rinse them off the rest of the way.

Ok, good, we’re done, no more shaving cream, I can get them out of the tub… I reach around for a towel and then remember that I moved where I keep the towels (cuz I’m brilliant like that).  They are now located outside the bathroom in the linen closet.  Bubs by now has climbed out of the tub soaking wet, and Monkey is standing up in the tub and I just know he’s going to slip and crack his head open if I grab a towel first, so I scoop up both naked, dripping, screaming boys and run for the linen closet.  I grab the first thing I see (a beach towel) and wrap it around both boys.

So I got them dried off somehow, still crying and breathing that hitchy way between sobs, and got them dressed.  Bubs was finally able to calm down enough to tell me “I sad”.  Monkey stopped clutching on to whatever part of me he could reach.  I apologized to them over and over.  And, because the whole experience turned my insides to complete jelly, the minute I got them both dressed I tossed them into their beds (where they were safe) and ran for the bathroom in time to get sick to my stomach.

How on earth did it not occur to me that the shower would be terrifying to my 1 year old baby with sensitive skin?  To my ASD kiddo with sensory processing disorder?  Yeah, parenting fail.  No mom of the year award for me.

Posted in Autism, Uncategorized | 2 Comments

The Unexpected Speed Bump

I’m a total Daddy’s girl.  I have been for my whole life.  My dad and I have always been close, although that closeness has changed form over time.  We’ve been lucky enough to develop an adult relationship as we’ve both gotten older, a true friendship.  We’ve related to each other in different ways as we’ve gone through stages in life, and our relationship hit the ultimate pinnacle with the births of both my children.  We had it all, Dad and I: cherished father/daughter relationship, adult understanding and friendship, and now that glorious parent/grandparent bond.

But today I’m writing about the other side of our beautiful coin.  The tarnished side.  In writing this, I’m trying to be kind and understanding, while staying true to my feelings.  I don’t know if Daddy will read this, and while I don’t want to bottle up my feelings, I want to be fair and understanding.  So Dad, if you are reading this, know that I’m not angry and I’m not attacking you.  I’m writing honestly and from the heart, from the deep well of feeling I have for you and our relationship.

Yesterday I got my feelings hurt hard.  Yesterday I got my assumptions turned on their ear.  Yesterday I got another look into that mirror of reality.

Yesterday my parents, who live an hour and a half away, came up for a planned visit.  Coincedentally, Big A was leaving for a trip yesterday, so he didn’t go in to work.  Because of this, Dad called yesterday morning and asked if we wanted to change their visit to Sunday so that I could focus on Big A before he left for his trip.  I totally appreciate the thought and gesture behind Dad asking if we wanted to change plans, I really do.  I’m very grateful that he thought of what was best for our family, above what their plans already were.  How very unselfish of him!  But unfortunately I didn’t react gratefully.  What I did say was that no, I had already structured the day around them coming so I’d rather go with the plans we already had.  I might have said something about not wanting to change plans at the last minute.  Now I completely understand how that sounded to him.  I sounded rigid and anal.  He responded with “ok, but you know that stuff comes up in life all the time.  Sometimes you’ve gotta roll with the punches” or something like that.  He was totally TEASING me, I get that…

Thing is, I wasn’t talking about me at all.  I was talking about both boys, about how I was changing their schedule for the day to accomodate a Grandparent visit smack in the middle of their day, and how that schedule change started the minute they woke up.  I was talking about Bubs and the fact that I had already started prepping him for Nana and PopPop’s visit.  I was talking about Bub’s newly structured life which included a picture schedule to help him deal with transitions and to help him understand the things that are happening to him.  So I was slightly disgruntled by the comment about dealing with unexpected events when I’m in the midst of working really hard to set up a structure that Bubs can depend on.  This involves a lot of work, a complete change in how we move throughout our day.  This involves hours spent assessing Bub’s needs, communicating with his teacher (who is our source for the pictures we need for his picture schedule), cutting out pictures, backing them with cardboard, covering them with clear tape to make them durable, cutting velcro, posting pictures around the house.  Explaining to Bubs what each picture means, walking him through the process of moving from one activity/area to another with picture assistance, teaching him to check his schedule to anticipate what the next step is.  All of this is building blocks so that Bubs can move on to a multi step schedule, which will help him understand what is coming and reduce anxiety.  I’ve talked these things over with Dad before, and I really thought he was understanding it.  I thought we were on the same page.

Dad called again later in the morning to say they were on their way.  Originally the plan was for them to arrive around 11 AM and that was what I had structured the day around.  Well, they left late.  Of course I understand, life happens, deal with it… but again, it messes up the structure I’m working to provide for Bubs.  Anyway, I asked Dad (a diabetic) what he wanted to do for lunch, because now they would be arriving at noon, and I know he needs to eat at certain times.  He said he didn’t know, maybe we’d pick up sandwiches or soup, or maybe we’d pick up and go out to lunch.  Of course, he knows I love to eat anything I didn’t have to fix myself.  Sure, it sounds lovely and relaxing to just simply drop everything and go out to eat… but no, it’s not that way in our new world.  I told him that if he wanted to go out to lunch we would have had to decide that ahead of time.  I said we can’t just pick up and go out, that I’d have to have time to prep for it.  Dad again said something about things happening in life all the time, that plans change and I have to deal with them.  This time it didn’t sound as lighthearted and teasing.  I don’t remember my response but I’m sure I gave him attitude before we got off the phone.

By this point I was crying.  I was hurt that he didn’t understand.  I felt that he was blaming me, ME, for being selfish and uncooperative.  How could he not understand?  The amount of work it takes to think through taking both boys to a restaurant, gather everything we might possibly need in case this, that or the other happens, prep the picture schedule that is still a work in process (and therefore we don’t have pictures to support a trip to a restaurant yet) and on top of all of that prep Bubs for an outing that he will not understand.  All of this work falls on me, because Big A is on his way out of town, and my parents would be arriving right when Dad needed to eat, so it would be more of a show up and leave again type of thing.  I’m not saying I’m not willing to do the work, I will do anything I can to improve things for Bubs, but it’s exhausting to think of all the work that has to go into a simple lunch out.  Completely takes all the fun out of it.  And at the time of day I was getting the news, I really didn’t have enough time to accomplish it.

Now I gotta be fair to Dad.  He hasn’t seen the picture schedule in action.  He pretty much has no idea what it’s all about, except for what I’ve told him.  He’s only seen Bubs once since he started school, and that was at the boys’ birthday party, which was crazy and there was no way we were attempting to use the picture schedule with over 35 people in our house.  This is all completely new territory for our family.  But I was assuming he “got it”.  I WAS being self-centered, or at least family-centered.  I was viewing things from inside our family bubble.  I know it’s unfair to expect that Dad would immediately understand where I was coming from.  But I was still hurt.

It hurt that while I am so hip-deep in wading the new waters of autism, someone who I’m very close to would misunderstand a situation so much.  It hurt to be blamed for reacting to a situation a certain way, when I was coming from a completely different direction.  It hurt to be told I was wrong, because that’s what I “heard”.

Bubba doesn’t really have melt downs.  Ok, he gets really REALLY upset at the end of Chicago Wolves hockey games.  He gets very overwhelmed and cries REALLY hard and shakes.  But other than that, he doesn’t have melt downs.  He’s pretty much a “go with the flow” kind of kid.  But here’s the thing: he doesn’t actually UNDERSTAND what’s going on most of the time.  When we take him places, we’re just kind of dragging him through life, and brave boy that he is, he just deals.  Yes he stims, yes he finds things to look at and talk about.  And yes, he enjoys himself for the most part.  He’s a very happy child!  But I want him to understand.  To UNDERSTAND.  And explaining thing to him verbally only get him so far.  We have learned since he started school that a picture schedule helps him tremendously.  He’s better able to navigate life without anxiety, with more understanding.  I cannot wait to move him up to a multi-step, stationary schedule so I can plan out his day and he can comprehend what will happen step by step.  Once we can establish this structure and he can understand, he will be better able to deal with changes when things come up.  And not only deal with unexpected events, but UNDERSTAND them.  But I can see where someone other than those closest to Bubs would struggle to understand the point behind the picture schedule.  Why go through all the work?  He’s verbal, why not just TELL him what’s happening?

Once my parents were here, and we were finally eating lunch, I screwed up my courage to bring up the phone calls from that morning (even at almost 40, challenging your Dad is still hard to do).  I really tried to not inject negativity and emotion into the conversation.  I let Dad know that I had been upset after our phone calls, and I wanted to explain why.  I asked him to be more sensitive to the fact that I’m working my ASS off to help Bubs, and that it’s not ME with the issue, that I didn’t want to rock Bub’s world by throwing something unexpected at him right in the middle of trying to set up structure that he can depend on.  I told him it hurt that he made it sound like I was not willing to change plans for personal reasons, when it was on Bub’s behalf that I was resisting.  And to be frank, I didn’t get the reaction I was expecting.  I don’t know if Dad understood what I was saying.  He didn’t really respond.  I expected an apology.  I didn’t get one.

We spent a lovely afternoon together.  I made sure that I stuck to structure as much as possible.  I made sure to use the picture schedule at every possible moment, to show Dad how much it helped Bubs understand what was going on.  I had to stop Dad a few times from doing something so that we could go through the process of using the schedule.  I hope it helped him understand.

I really wasn’t anticipating MY Dad to not understand anything that is happening in our family.  He’s usually my rock, my voice of reason.  And I know him well enough to see completely where he was coming from.  But as I talked with my parents later in the day about an interview I saw with Temple Grandin, I watched my dad check out of the conversation.  As I tried to relay what I though was profound information about autism and something Bubs struggles with, I watched my dad disengage eye contact, turn slightly away and stare at pictures on the wall.  What just happened?  I’m trying not to read too much into it.  I’m hoping that he was still listening to what I had to say.  But it APPEARED that he didn’t want to hear it.  From his actions, I now worry if he’s on board our autism train.  I now have doubt.  I now am not sure.  I know he loves Bubs beyond all else (truth be told, maybe even a smidge more than Monkey, and that’s ok) but what else is happening here?  Is there denial?  Is there disbelief?  Is there some sticking of a head in the sand?  All completely valid, of course.  Dad is entitled to his own emotions about what is going on.  But I just totally was not expecting anything but complete and total compliance to our way of life and our philosophies when it comes to Bub’s autism.

An unexpected speed bump on my proverbial broken road.  But Dad’s right, unexpected things happen in life.  So I’m gonna hold it together as I roll with the punches.

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Where Has the Summer Gone? 9/7/11

Wow, so it’s been a while since I posted, a really long while…

Where to start?  I kind of took some time to myself to process everything, to come to terms with everything.  I’ve been testing out talking about Bubs and his diagnosis, trying different phrases and ways of describing it.  Taking into account Big A’s view on things, listening to how others use words and how they make me feel.  Figuring out what “speaks” to me about Autism, what inspires me, and what makes me uncomfortable.  I’m finding my place in this new world.

Oh, and I’ve been at Hogwarts all summer.

Well, not literally.  But I have been there in my head.  I’ve had the wonderful gift of being completely able to escape from my real life into the 7 books of Harry Potter.  I have always been an avid reader, but I’m not one to follow popular trends, so blew off the HP craziness when it started years ago.  For whatever reason (I’m thinking the Man Above gave me a push, knowing I needed a way to escape) I happened to watch the first movie one rainy Sunday in early July, and was instantaneously hooked.  A week later (thank you I had used copies of all the books in my possession and had already finished book 1… I vowed not to go see the final movie until a) I finished all the books and b) I had seen all the movies.  Finishing the books took me almost exactly 1 month.  And then Someone smiled on me again, because I managed to buy movies 1-6 on DVD for $5 each.  Ordered #7 on pay-per-view… so I’m planning on seeing #8 tomorrow night.

Bubs is doing fantastic.  Speech is continuing to go well, although I think we’re ready to move on from the Awesome Miss R.  I don’t think home-based speech therapy is what Bubs needs anymore.  He needs to get out there…  Oh, he did get chicken pox this summer.  Luckily a mild case, just on his tummy and it didn’t seem to bother him at all.  Monkey never came down with it.  So we were stuck in the house for 8 days until the rash scabbed over.  I was blessed with the opportunity to buy a huge plastic climber ($10, gotta love garage sales) and put it in the basement, so we survived (and will survive the winter the same way!).  Bubs also went to day camp at the park district… basically it was like a mini preschool program.  According to the teachers he did pretty well, but they weren’t surprised to hear about his diagnosis.  I chose to tell them at the end of the 4 weeks, because I wanted to see what they would see in him without the heads up.

Monkey is growing like crazy.  He’s crawling and pulling up on furniture, and is starting to stand on his own.  He is constantly all. up. in. his. brother’s. stuff!!!  Yes we are having brother moments, including a few hair pulling incidents: Bubba (sporting a buzz cut) is fascinated with Monkey’s wispy blonde mowhawk.  Our two newest phrases are “No no Monkey” and “Sorry Monkey”, sometimes interchangable.  But there are hugs and kisses and tons of eye contact going on too.  They both love music and laugh at each other as they dance together.  They share a passion for Mickey Mouse and laugh in unison at the openning sequence of Mickey Mouse Clubhouse.  So we are planning a December trip to Disney… more on that later.

Sorry this is so scattered… I’m leaving it up to inspiration and not obligation to write, and my brain’s a bit all over these days.

I’ve been following some other blogs, my favorite being  If you ever need inspiration as the parent of a kiddo with ASD, Jess is the one to give it.  Gonna close for now, I’ll post again soon when it’s not like following a rock skipping across the water.

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What the HELL??? 7/4/2011

First off, happy 4th ya’ll!  I know this is a stressful day for many ASD kiddos and their families… Luckily my Bubs likes fireworks and says “doon, doon” (boom, boom, damn those bilabials!) whenever he sees them!

So it’s been 4 days since receiving the autism diagnosis.  And in those 4 days, MY SON HAS ACTED MORE AUTISTIC THAN HE EVER HAS!!!  What the HELL????  The very next morning he had a meltdown because I tried to put a tank top on him.  He flipped out because his shirt had no sleeves!!!  He’s worn tank tops before, just not this summer (first day it was hot enough out).  This was our very first meltdown over an article of clothing.  Ish.

Lots of stimming, lots of jargon talking and odd facial expressions, lots of random running around, lots and lots and LOTS of sensory seeking.  I actually asked him “did you just need permission?  Is that what getting the diagnosis did for you?  If they’re gonna call you autistic, you might as well act autistic?”  (no reaction by the way).

And by the way, on top of all that (and the new OBSESSION  with Finding Nemo, please Lord don’t make me start hating that beloved lil fish) I’m so ready to take the GFCF and shove it.  We’re planning on reintroducing gluten and casein (one at a time) in August to see what happens, but right now August seems sooooo far away!

I feel like a new family member has moved into our house, and  his name is Autism.  Like that deadbeat stray uncle that no one really wants to live with them but can’t say no because he’s family, and you just want to get rid of him but he’s parked on your couch eating chips and watching Cops…


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