27. A Month Smashed Together

It has been almost a month since I wrote anything.  I find that unacceptable considering so much of my life centers around autism.

We started our Friendship Club a couple of weeks ago.  It's so nice to have J go to a group for kids with autism while I go to a support group for parents.  It's so hard, but it's so nice to know other parents are going through the same thing I am.  Stormy doesn't really want to go; he thinks he may offend someone because he isn't as rainbows and butterflies about autism as some.  I think he'd be surprised at how many others sit there and say, "Autism makes me insane!  I'm at my breaking point! I just want to take a shortcut home from church without someone questioning my driving!"  Really, I think he is more concerned about potentially offending me.  Because as accepting as he is of autism, he still struggles with many aspects of it.  We all do.  As accepting and understanding as I am, I still have a lot of struggles with autism

I had J's IEP meeting at school.  It went pretty well.  As well as I expected, at least.  I dreaded meetings like this at his old school, but the people here are so much more caring that I don't leave in tears anymore.  About the same time, we got two kittens from the shelter.  It was totally Stormy's idea - at least to get two of them.  They're brothers and in the essence of keeping our house as nerdy as possible, we named them Draco Meowfoy and CT-5555 ("Fives" for short, thank god).

Look how ridiculous they are.  I should get some better pictures of them, but there you have it.  They're actually pretty fun to just watch because they're still kittens so they play and horse around and run around the house like a couple of nuts.  They love when my husband comes home because they use him as their nap time bed.  He gets a lot of kitten love.  I think the kids like them.  Tiny thinks they're animated stuffed animals so I always have to keep an eye on him when the kittens are around.

About three weeks ago, J came home with a permission slip to try out for the Academic Bowl at school.  It was only open for fourth and fifth graders.  I signed it and he went through some rounds of elimination before making it onto the team!  He is very excited.  His first practice is this week, and I have to go at the very end to find out about uniforms, practice schedules, and meet schedules.  As much as that doesn't sound particularly thrilling, I am actually looking forward to see what the Academic Bowl is going to mean for J.  I really hope he does well.

I'm finishing up this entry this morning before the bus comes, and I keep getting distracted because all J is doing is that auditory tic that I love so much.  It's still here and he's now saying, "I can't help it, it's a tic."  I understand that may be a reason for the noise, but it's not an excuse.  We are trying to get him to be more aware of it because it does nothing positive for anyone.  It annoys and frustrates everyone in the house, and also everyone at school.  It is an absolute constant and yet inconsistent enough that it isn't a white noise.  I'm about at my wit's end with the noise.

I feel I have been so overwhelmingly busy.  The baby started a 1's class at the church down the road and he has a blast going there, which has given me a couple of free hours twice a week to work on my own projects.  I'm trying hard to work on projects and hopefully start an etsy shop in order to create some sort of cash flow.  I'd rather do something creative than drive to a job where I am under someone else's rules and schedules, but I also really enjoy being home and being able to keep an eye on the kids.  I like knowing all the different aspects of their day and being there to help with homework or chores, and being there to do fun stuff, whether it's play outside, watch a movie, or just read.  The first seven years of J's life I had to work and I realize how much I ended up missing out on.  I don't want to have to continue to miss out on things, even if it's just one day a week.

Tiny, after stuffed animal day at school.  Hobbes is his favorite.  During nap time or bedtime, all his other stuffed animals get thrown out of the crib, but Hobbes stays inside until it's time to wake up.

26. Tick Tock

It didn't take long to remind me why I hate the school year.  I don't really mind waking up early, because it does help to give a head start on the day.  But getting up at 6:10a every morning only to be angry, annoyed, or stressed by 6:25a isn't really how I want to spend the early minutes of my day.  

J has had trouble sleeping these days so he's usually cranky in the mornings.  It's a battle to get him to sit down for breakfast and then afterwards brush his teeth.  He has plenty of time to get everything done, but each step seems to be a battle.

He goes through tics every few months, where one will go away just to be replaced by something new.  It's always been a physical tic, but now he makes sounds - constant sounds every 5-10 seconds. The sounds slow when he reads, but otherwise he can be sitting at the table eating and in between bites he makes the noise.  We'll be watching television and he'll make the noise.  It is so constant and loud that it is beginning to disrupt everyday life.  It is not something that is easily ignored.

I think I am more annoyed than anyone else in the house by the tic.  Maybe it's because I am around it most, and I feel that since I deal with all these other fun aspects of autism, I don't also want to deal with one that is just a persistent noise.  His therapist understood my frustration and understood why it was disruptive and worked with J to find a technique that would at least lessen the volume of the noise.  Except J doesn't want to work on it.  The kids at school don't comment (according to him) and so he doesn't see a need to stop or change.

This tic seems to have lasted longer than the others - but that's probably because it far more annoying than anything else we've dealt with.  While I write the next couple paragraphs, I'm going to point out every time I hear the tic.

He's always walked on his toes (tic), but now he (tic) also kicks the backs of his own heels as he walks.  I haven't (tic) figured that one out yet, to be honest.  And it (tic) may not be a tic in the traditional sense, but it (tic) is (tic) something new that (tic) has crept up in the last couple months.  It will probably go away as all the other tics do (tic).  When he gets overwhelmed in groups of people, he does stem, but sometimes it will overlap and even when he's home he will continue to do it for a few days (tic) as though (tic) it (tic)(tic)(tic) has turned into a (tic) tic (tic)(tic). (tic) Normally when he's in crowds (tic) he (tic) will (tic) (tic) start to roll his eyes around in his head, as though he is truly struggling to focus on something and instead his eyes are focusing on everything at once.  He only does it in crowds or closed spaces (tic)(tic)(tic)(tic)(tic)(tic) so I do think it's a form of (tic) coping with this, except a few days later, he will still do it until it slowly dissipates.  (tic)(tic)(tic)(tic)

I started writing the above paragraph at 6:50a and stopped at 6:55a.  During this time, J was tying his shoes.

Maybe one day I will learn to ignore the tic.

*snort*

Sorry.  I just realized that I know that won't happen.  I wish I could 100% accepting of all tics and noises and fun aspects of autism, but I can't.  This one drives me crazy.  I keep my cool so well overall, but this tic has taken all enjoyment out of watching a movie together or playing a game.  I want that enjoyment back.  I don't know when I will get it.

But I don't want to end this blog post on a negative note.  So I will end with two pictures of Tiny the baby who started the 1's preschool class at the church up the road!  He has his very own backpack and spends the morning with seven other little 1's, learning shapes and colors.  He had so much fun on his first day of school!  The pictures are from the very first day of school.

25. Temple Grandin

The other day Stormtrooper and I watched Temple Grandin.  I put it in our Netflix queue ages ago and it finally arrived.  I really didn't know what to expect from watching it, but I am glad I did.  It was somewhat painful at times because you really saw the pain and awkwardness that people with autism face.  As a parent of someone who has autism, this was particularly difficult because it makes you sad to think that this is what your kid is experiencing.

Temple didn't speak until she was four.  J didn't speak until he was three.  She ended up going to a boarding school because she got in trouble for hitting another child, but her mother, who seemed to be an advocate for Temple, said she never hit unless provoked.  This has been something that has been a worry for us.  We've often wondered what J would do if provoked by other kids and honestly the outcome could be disastrous.  I think I've spoken about it before, but J's view of reality is so different from actual reality that he could think he was in danger, but actually be fine.

Moving on in the movie, Temple goes to college.  She doesn't want to go, but her mother makes her.  And honestly, I make J do a lot of things he doesn't want to do, and I hope he'll be a better person for it later on in life.  There's a scene where Temple is upset because all the other girls have roommates, but hers hasn't arrived yet, so she has to be all alone in the dorm room.  She's very upset by this.  It was sad because these kids know they're not normal and while they're okay with it at times, other times they just want to be like everyone else.  She knows she's different, yet she wants a roommate.  All the other girls have roommates, why can't she?  I have to answer questions like this frequently with J and sometimes I don't even have an answer that's adequate.

Temple is awkward in class but obviously thrives because she is so smart.  I don't even think she realizes she is smart.  J has no idea he is intelligent.  He never studies, he half-asses his homework.  He doesn't even attempt to look at his spelling words.  And yet he has straight A's.  I think last year, his end-of-year averages, when you took each quarter and averaged those grades, his lowest was a 95 in Reading.  Hopefully this will continue to transfer the older he gets, but because he has no study skills and you can't teach him study skills right now, I have no idea what middle school and high school will bring.  Since he is so resistant to things that don't make sense in his mind, trying to talk to him about studying would be fruitless.  Why would he need to learn to study if he doesn't need to study?  One day he might, and I guess I'll end up dealing with this later.

There's a couple points in the movie where Temple has to really think outside of the box.  It's a pretty amazing feat to watch because autistic people are so literal and there's a scene where she changes cars, changes her new car's appearance, and changes her own appearance in order to gain access to a cattle farm because she's a woman and they don't allow women on their property.  (I should probably preface all this by saying this movie took place several decades ago.)  She is able to really think on a different level than neurotypical people which allowed her to design different and more efficient tools for the cattle/meat industry.  She also said something that was very significant to me.  She said that nature is already cruel and we kill animals to eat, but there's no reason why we have to be cruel to them.  There's no reason why they can't die in peace.  And I think that is very important.  It shows respect to all living things and shows respect to those giving their lives for us, especially because these animals give their lives to us unwillingly, so it would be nice for them to be able to have a decent life and a decent death.  So she incorporated that ideal in a slaughterhouse design that kept cattle calm and allowed them to die with some dignity still intact.

We watched that movie and thought, we hope for these things with J.  We hope he's able to accomplish something greater.  He is so smart and while he is oftentimes the most self-centered person I know, he has a lot of kindness in him that allows him to really shine and stand out.  He always has ideas of things he wants to do when he grows older and some are realistic and others are not.  He doesn't understand that he has autism yet.  He knows he has it because we tell him, but he doesn't really understand what it means yet.  Temple was able to grow to a place where she could advocate for herself.  I want the same for J.

Maybe this is all like a glimmer of hope, a glimpse of what life perhaps could be for J.  I want the best for him, as all parents do for their children, but sometimes in our dark days with meltdowns and tantrums it's hard to imagine that he would ever conquer those things enough to be self-sufficient and highly educated.  Maybe he will surprise us all.

24. School Again!

Today was the first day of school.  Alarms went off at six this morning, which was the earliest I have gotten up since May.  The morning went well, zero incidences.  Tiny usually sleeps until at least 8:30a and the bus comes a little after 7:00a, which gives me a lot of time in the mornings.  Last year I went back to sleep, but this year I thought I should be more productive and use this time to my advantage, so I've decided to start exercising during this time.  I do hope to lose weight, but also just get in better shape.  It's nice to have a lot of energy to run after the kids and I do enjoy being active.  

Last school year I had a list on how to earn pebbles (our reward system) for having good mornings and this morning was a very good morning, so pebbles were given!  We had over fifteen minutes of free time before having to go wait for the bus, which doesn't always happen because J has so many difficult mornings.  This was a great way to start the year!

Yesterday was the first Open House, where we went to meet the teachers and sign up for the After School Program (ASP).  J wants to do Science Olympiad, which is on Tuesdays, and then he will go to ASP one afternoon a week to have fun, play with some of his friends.  J's teacher has experience in special education and when I introduced myself to her, she was fully aware of J and had already spoken to his teachers from last year.  Everything I said to her about J she wrote down in her notes so I felt she was really listening and paying attention.  I left with a good feeling ... and a huge stack of papers to fill out for the school year.

Then we went to see the gifted teachers.  We got more information on the things they are going to do this year, and we also left with more papers to fill out!  The coolest part of the gifted program this year is that the kids are going to make a Lego amusement park.  I don't know all the details, but I know Legos are a big deal in this house!  So anything with Legos will be awesome.

The scary part of school is that it's almost eight hours of not being with J, six and a half hours of school and two half-hour bus rides.  I don't feel the need to always be with him, but I get so many emails from teachers about incidences at school that I often feel lost as to how to respond.  I can talk to him when he gets home, but once something is after-the-fact, J doesn't want to talk about it or he won't talk about or he'll just say "I don't remember."  I can give teachers advice or encouragement, but if I'm not there to help, guide, or correct in the moment then there's often not much I can do from home.  I hate the feeling that my child is a burden on the teachers, but that's often the feeling I am left with.  Last year his homeroom teacher was really great and understanding, but this is one of the only times I have felt comfortable with J's teacher.  Usually I am left with "Please address J's behavior."  Right.  Thank you.  So I'm praying this year will be great!

To give the boys more responsibility, this year they are both going to make their own lunches.  J was a little nervous because he wasn't sure how he would know what to pack.  So I made an easy chart so everyone would know what to put in their lunch boxes and it's on the front of the fridge.  Both boys find making their lunch really exciting.  

I am hoping for a good school year.  I am still working out therapy schedules so that everything can fall easily into place and be on a very set schedule.  It's a work in progress, but I am remaining hopeful.  I'd like to have everything happen on the same days of the week, but we will just have to see how that works out.  Tiny will be in the 1's class at the church around the corner two days a week, so for six hours a week I will be childless while everyone is in school!  Hopefully I will be able to get some work done at the house and run errands more quickly since I won't have children to get in and out of the car and direct around stores.  It'll be very relaxing to just do my shopping with a baby yelling at the other customers (he's very friendly, but very loud!)

Gryffindor backpack again this year.  And a Star Wars t-shirt.  

We like for our fandoms to collide around here!

23. The Meltdown

J had his first major breakdown since camp today.  He took the green outside trashcan to the end of the driveway since the garbage is collected Wednesday mornings.  He somehow tipped the can over and half the trash bags spilled out, amongst other items.

The first thing he did was start to cry, which honestly neither surprised me or bothered me.  I knew it would be a painful process getting all the trash back into the bin, so I went upstairs to put Tiny down for a nap before coming back outside.  Stormtrooper had righted the can so that it was standing again, which was great.  The can was still full of trash and would have been difficult for J to put back upright, especially while crying.

Stormy and Iron Man went to fix the ramp up to our shed while I stayed at the end of the driveway to deal with the trash.  We live on a cul-de-sac so at least while J had his tantrum we didn't have to worry about cars or any passersby.

I told him he would not be able to go inside until all the trash was picked up.  He didn't want to do it. There were flies around the garbage, and J's biggest fear is anything regarding bugs and insects.  He was hysterical, tears and snotty nose, screaming and flailing.  I kept my calm and did just what the therapist said - to have him complete the task through to the end without giving into the tantrum.  

I mentally divided up everything on the ground and pulled out my cell phone.  I set the timer for one minute and told J which pieces to pick up and gave him one minute to do it.  At first he refused, he kept his feet firmly planted on the ground, and screamed.  The first thing he picked up was a small box, which he tried to throw into the trash can, but he missed and it fell back on the ground.  At that point a fly flew right by his ear and he took off running around the cul-de-sac, screaming.  Not crying or yelling.  But screaming in fear, a sound you would expect to hear from someone in agony.

Two of our neighbors came out of their respective houses and watched.  I ignored them and waited for J to stop running.  Then I made him come stand back next to me.  I put him in a time-out outside, which was more to stop the overstimulation and calm him down.  He faced the side of the house, hands by his sides, eyes closed, and I told him to breathe.  He stood there for a few minutes, and once he stopped shaking and crying, we went back down to the bottom of the driveway to continue to pick up the trash.

We were down at the cul-de-sac for about an hour.  There were four kitchen-sized trash bags, one small box, three Starbucks cups, and a couple of envelopes from discarded mail.  That's all that fell out and yet it still took that long.

I tried to find the words to convey how this meltdown was, but words cannot describe the extent of tho particular tantrum.  Crying and screaming, of course, but if you were not there, screaming is not an adequate word.  I stayed calm and talked him through picking up all the pieces off the ground, held him next to me as protection when he was flailing his arm, trying to shoo away phantom flies.  Time sort of stopped in my brain when it was all happening.  I knew our neighbors were probably wondering what on earth was happening at our house, but it was more important to help J through this.

Afterwards, my husband and I joked that one day our neighbors may call the police if they hear another meltdown like that.  It's no telling what they think is going on.  Unfortunately, it wasn't much of a joke and is actually a small fear in the back of my mind.  When people first see J, they see someone who looks normal and perhaps even speaks normally.  They don't see the autism until later, which in this case may be more of a curse than a blessing.

Also afterwards, I didn't allow myself to calm down, I just refocused on the family chores that we were doing when the meltdown began.  Once all three boys were in bed, Stormy and I watched television and then went up to bed.  I kept thinking about it and playing the image of J running around the cul-de-sac while screaming as though on repeat.  Sometimes these things are have huge effects on me, sometimes it takes its toll on me mentally.  It's so hard to stay strong all the time because autism isn't something that goes away.  When J has a good day, it doesn't mean he had a day without autism symptoms, it just means he had a day where those symptoms weren't overwhelming, a day without tantrums.  But even the good days have small bouts of stress.  It's a never-ending thing.

While J had his meltdown, Stormtrooper took the opportunity to have a conversation with Iron Man about autism.  He pointed out that J's meltdown and tears were directly linked to his autism.  

"Does that look like fun?  Does that look normal?"

Of course he said no, and Stormtrooper explained that just because J got to go to summer camp for kids with autism doesn't mean that autism is fun.  J wasn't having fun, he was scared and upset and sad and angry.  He was such a mix bag of emotions that he was nearly impossible to calm down.  Iron Man forgets about those times when he says things like, "I wish I had autism."  Stormy said it seemed to click a little more with him that having autism isn't something to want, isn't something to be jealous of.  For a little kid, I can understand the frustration where your brother gets a lot of attention because of his antics, where he gets to go to summer camp, and gets to get special line-jumper passes at Universal Studios and Disney World.  However, I do find it disappointing that he has difficulty separation the so-called "perks" from the obvious hardships and downsides to having autism.  I think the understanding will grow the older he gets, but it will be something we continue to work on with him.

We were supposed to go to our autism group get-together, but we had to cancel because of the meltdown.  I'm sure that they understood since all of their children also have autism, however it is still one of those realities that not all parents understand.  I've had friends who don't understand, friends who hear the phrase, "We're going to be late because J is having a tantrum," and wonder why I let my nine-year-old be such a brat.  God forbid we have to cancel something.  It doesn't happen often, but it does happen.  Thankfully we do have a close-knit group of friends and family who understand about J and don't question his bad days, they accept them as a part of our reality.

Maybe one day I will find the correct words to fully describe how terrible this particular meltdown was, but I am glad that it's over.  Hopefully our next tantrum will wait a while.  I don't know if I can handle any more tears.

22. Three Weeks of Summer

When I went to pick J up from camp, one of the first things he said was, "Can you sign me up to come back next year?"  I was so happy that he had a great time.

He came back from camp ... different.  He came back happier and more talkative.  He's always been fairly talkative to me, but less so to my husband.  Of course, I am home all the time with him, and my husband works around fifty to sixty hours a week.

It's been a week since J has been back from camp and while he still has a debilitating fear of bugs, he didn't have any other tantrums.  He was a little hyperactive from time to time, but he listened and did his chores without complaining - sometimes even initiated his chores without me having to ask.

When we went to the park with his baby brother, he played with him on the playground very carefully.  He blocked any openings where he might fall, he steered him away from the slides that were hot (he even tested the slides himself first to see if they were too hot).  On the slides that were cool enough, he carefully helped him so he wouldn't fall off the bottom of the slide.

For a week, he didn't play his DS or on the PlayStation.  He didn't play with his Legos.  Instead, he spent an entire week spending time with me and his brother.  He did some arts and crafts with me while the baby slept, we watched the Lego Movie (more than once), and in general just spent time as a family.  Everything was relaxed and quiet.

When he was at camp, I know the counselors said his name and said hello every time they passed him.  I wonder how much of that came back with him.  He has certainly been much more open to saying "good morning" when he wakes up and "hello" when my husband wants in the door from work.  Whatever happened at camp that helped him to come back a happier person, I welcome it and am grateful for it.

For now, we have three weeks left of summer before school starts back.  We do get out before Memorial Day, but going back the first week of August seems really early as well.  I know I will be glad for school to commence, but part of me is really going to miss having the boys home all the time.  We will have to make the most of our three weeks and the little time we have left!

Kings of the Playground

21. Summer Camp

If there's one thing that most families with special needs kids don't have, it's an excess of money.  We're fairly lucky overall because J doesn't have any physical needs that require a lot of money, but we do pay for medications and therapies.  We buy things to help him cope better at home, and often end up spending our excess money on things to help balance the house out.  So when it comes time to look for summer camps, the ones geared towards children with autism tend to be outrageously expensive for our budget.

Then I got an email from someone in our autism group about a camp that only asks for $100 donation for a week-long sleep-away camp.  

Are they serious?!

We signed J up and he was accepted.  The activities are very stereotypical summer camp stuff: canoeing, archery, horseback riding, and they even have a rock climbing wall.  The big difference is that the counselor to camper ratio is extremely low, which will really help ensure J has a good time.  Whenever I sign him up for a neuro-typical activity, I always worry because what if the teachers/counselors/adults in charge don't know anything about autism?  What if J has one of his more violent tantrums where he screams and pounds on the floor or walls?  By going to a camp where every single adult there knows and understands autism will help not only ease my mind, but also ease J's mind.

He wants to learn archery.  That's all that he talks about, so hopefully they can help him learn.  It is something that I could see being a huge issue because if he can't hit the target then the situation has the potential for meltdown-mode.  Luckily, the camp should be completely able to handle any mishaps like that.

Our other big kid was not happy that J gets to go to camp.  He thinks it is unfair that he doesn't have autism.  But all he knows at his young age is that autism gets the ability to "cut lines" at Disney and go to fun camps.  He sees the tantrums and the hardships, but I think his young brain doesn't process it the same way we do as parents.  I can understand his frustration since he wasn't able to go to the same type of camp, but we still sent him to different camps - camps that may be harder for J to attend because of his special needs.

I feel like I need to process these thoughts regarding a child wishing they had ASD a little more in another entry.  It's rather disheartening to hear, but somewhat understandable.  It also goes back to my thoughts on making sure that your special needs child does not become the most important person in a family, and I think because J inevitably gets so much attention (albeit not always positive) because of his ASD that our other boy does not always feel as important.  From my eyes, I can sometimes see it, but other times it really frustrates me because he gets so much other focus.  On Mondays my husband takes him out to dinner, just the two of them.  He went to a camp - just him - that specifically I did not sign J up for.  We always reinforce the good things he does, and the things he is good at.

Anyway, I dropped J off at camp yesterday and he was very excited.  Which I know he was excited even though he showed no outward signs of it.  We had his bag all packed and ready, put it in the car, and drove the 50 minutes to camp.  We checked in, he got his temperature taken and answered a few regarding his medications, and then we walked to his cabin.  He picked out a bed and I helped him get his sheets on.  He brought his pillow pet, which he prefers to use as a pillow than a regular pillow, and his Star Wars sheets.  He gave me a hug and was ready for me to leave so he could have a good time and play!

I wasn't emotional dropping him off because I knew he was excited to be there.  I was very happy for him and very happy that he would get to have a normal camp experience surrounded by kids who are just like him and adults who have worked with autistic kids before.  We are very fortunate to have been given this opportunity.

Before he left, J picked out some notecards and I put addresses on them and gave him some stamps.  But if he doesn't write because he's having too much fun, I am okay with that!  I would rather him forget to write home because he's having a blast, but if I get to see a note from him then that will make me happy, too.

I still have three more full days before I go pick him up on Friday.  Here's to a great week at camp!