welcome fall…

It’s the first week of school.

To be more precise, it’s the second day of school which for our district is the first full day.

I’m normally the first one to cheer the first day of school.  I’m the mom who has the countdown for the first day of school started on the last day of school.  I usually host a brunch for friends on the first day of school to celebrate the quiet.

Even as a kid I looked forward to the first day of school…

…not this year.

Cj started middle school.  This means a new building, new teachers, new paras, new pick up and drop off plans.  Somewhere mid summer I started waking up in the middle of night with my heart pounding…Does he have to change for PE?  Will they continue his binder schedule system?  How will we get him to work a padlock?  When will his teacher have her baby?  Who will be his para?  Will his shoes fit?  Will he be able to open his new water bottle?  The answer to all these questions?  I could say, doesn’t matter, it will all work out, but you know that’s not my style.  The answers are as follows, no, yes, I found a padlock you that you turn wheels to make a word, in 8 days, two great ladies, no, yes.

From the sounds of things, both the kids had a great day and were ready to head back for more today.

I survived.  I did not cry as I left the school yesterday.  I almost did.  I was incredibly grateful for a group of friends who distracted me with eggy casserole, chocolate pecan coffee cake and lots of laughs.

Lulu has her bestie and the therapy dog in her classroom so she’s set. (Her teacher is the dog’s caretaker so she spends the first half of every day in their class.)

Cj woke up the night yelling about monsters, but fell back to sleep.  He woke up this morning ready for the day.  On the walk to school, he reminded me 3 times of our pick up meeting place and double checked to make sure he had chocolate chip cookies in his lunch.  Take that autism!!

Now on to something completely different.

My brother’s flag quilt is finished.  My aunt did a great meander on her long arm with variegated blue to grey thread.

If he doesn’t like it, I’m keeping it.  Well, first I will kick him in the shin and then I will keep it.

so this is it

the day that autism broke me

broke me down to my knees

broke me to the point I was weeping on friend’s shoulder right in the middle of the hallway of my children’s school

broke me

for just a moment

Let me tell you the truth

I’m worn.

Autism sucks

Being a constant advocate takes its toll

What if there’s something I missed?  What if that one little thing I didn’t do could have been the one thing that meant this wouldn’t have happened?

The thing about autism is that it seems I can’t fix it

I’ve spent so many years thinking I could figure out the code.  Thinking that somewhere out there was the answer and I would find it.  Try this or that or that…maybe this…or that…

there’s no single answer

what works one day, doesn’t another

Ultimately it comes down to me to help this boy navigate his way through our world…


Here we are, all these years later

Everything I’ve tried and here we are

I have learned that if you cry too much in a 24 hour period, your eyelids will swell to the point it will hurt to blink.

So here I am at a low point trying to find the bit of hope that will give me the strength to stand up and carry on like everything is just fine.

As I was told the other day, my hands are full.

damn straight

But, I will pick up and move on.  You see, that’s what we all do.  We carry on.  We have to.

There’s some talk out there about reality and blogs and I say this…

write what you want, it’s your show.

Know that no person is perfect.  No person’s life is solely sunshine and daisies, but now and then we all get sunny day to pick a bouquet.

If you go around comparing your life to what you see on blogs you might just drive yourself mad.

Wouldn’t it be more fun to bake yourself a cake?

As for me, I think some people misinterpret what I do and why I do it.  Yes, I love food baked from scratch instead of some cake baked who knows where…Yes, I like to nap under handmade quilts instead of some store bought poly-blend blanket…Yes, I like to sit at home and knit on a Friday night.

Do you know why?

Because, nine times out of ten, things like flour, eggs, butter, fabric, thread, and yarn all do what I ask them to do.

If they don’t, I can fix it.

Autism on the other hand, I cannot.

adventures in autism

April is autism awareness month, so I’m here to share a bit about how another year with autism is coming along at the cottage.

One big change  is actually using the word autism when talking with the kids.  I put off using the word autism.  I don’t want cj to use it as an out for telling us he can’t do something.  Like the other night when he told me he couldn’t brush his teeth “because of the autism.” (nice try buddy)  I also don’t want lulu to think our expectations of him should be any different from the rest of the family.  At the same time, she’s in first grade and sees how different life is for our family.  She has questions, like any child would, about the whys of his behavior.  I brought home a copy of My Brother Charlie to read with her.  It’s a thoughtfully written book by Holly Robinson Peete and her daughter, written from the daughter’s perspective of what it’s like growing up with her twin brother who has autism.

We also talked about how each person’s brain works in a different way.  It’s like how she loves strawberries, but cj would rather have an apple or how some people like winter while others like summer.

We all experience the world in different ways.

People with autism have a difficult time with conversation and movement the same way she sometimes has trouble riding a bike.  With practice, we can all learn how to do things better.  In the same way she took gymnastics to learn new skills, a child with autism might go to all sorts of different therapies.  Occupational, speech, and physical therapies help kids learn different skills.  Sometimes they learn through playing games and sometimes they have to work really hard to learn a specific skill, like how to tie a shoe.  One of the best ways for kids with autism to learn how to talk with people is for you to talk with them.  Some kids with autism don’t talk at all and many times it seems like they aren’t even listening, but they are.  They love to talk and play with other kids, but just need help learning how.

I work to maintain a balance for lulu.  She mothers him at times, but I do my best to make sure that it’s on her terms.  Sometimes when he’s acting out she will ask me,”is that the autism?”  Sometimes it is, sometimes it’s just kid.

The other big leap is our return to occupational therapy.  He did OT when he was 3-4 years old.  Then we moved and he started school and would do a bit of OT through the school system.  Then we decided he would take a break.  This winter, his focus and attention became such an issue that I knew we needed to do something more.  He will NOT take any form of oral medication so we had to find a different plan of attack.  (when he needs an antibiotic he chooses a shot and not oral meds!)

We met with an occupational therapist and after a morning of testing, we decided to try iLs.  It’s a listening therapy that has a special set of headphones with an extra speaker in the head band that vibrates along with the music.  This allows the vibration to run through the skull to the inner ear, to work the vestibular system.  Right now he’s about 3/4 through his first of two programs.  Each hour session has 4 specially chosen, mostly classical, songs.  While he listens, we do a mix of sensory and motor activities.  We play catch, blow bubbles, roll & balance on exercise balls, he does flash cards while standing on a balance board.  We try to do different things each day to keep things fresh.  Some days we play with toys or go for walks too.

I’m at a bit of a loss for how it actually works.  I think it’s like my car – I get in and turn the key and it works, I understand the basic processes, but I don’t understand every little in and out, but it works.  I don’t understand how they could tell me, around session 12 you may see some disorganization (fancy word for lots of big bad ugly days in a row).  But you know what, shortly before we hit session 12 we saw disorganization, and then it went away. (thank goodness!)  It seems that teaching your brain new tricks is like teaching your body a new workout.  When you work your body to its limits in a training session you are left with sore muscles, they hurt, you ache, and it leaves you a bit crabby.  But then you push through and you work past it and land on the other side where can really start to see the benefits of your workout.

His brain was working so hard to put all the connections together.

Then, on the other side of that phase, one Sunday morning, there was a boy who sat quietly through church who leaned on my shoulder through most of the service.  His ability to transition from one task or event to the next has improved dramatically.  The number of times I have to raise my voice to be sure he is hearing me has decreased just as dramatically.  He even chats a bit on the phone now instead of talking over the other person.  He tells us what happened during his school day.  He argues with lulu over what they will watch on tv.  We still have a way to go in all areas, but I feel positive about the changes that are happening around here.

It’s nice to feel positive.

The last thing I have to share today is cj’s project for the school invention fair.  He made a holster for his drumsticks.

He was a bit of a lead foot on the machine at first, but figured out pretty quick that the slower you take it, the more straight you can keep your stitching line.

I think it’s worthy of repeating, it’s nice to feel positive.