Autism and It’s Changing Scope In Our World

 

Autism seems to redefine itself daily in our house.  On Thursday, I went to my Autism Support group meeting and was downright overwhelmed by the stories told that night by the other mothers.  I hear the Dad’s group has the same rawness to it that our group does despite the gender differences.  Raw is raw.  Autism is just that.  Raw.  It’s taking a deep effect on families from overblown stress that breaks the family down and then kicks them while they are there or pushing them even further into the depths of everything it means to live with Autism.  I know there are days when I wonder if I can do this and do it well.  There are days when I just want to check out and get some much needed sleep.  I always wonder what would happen if I gave up my fight.  On Thursday I heard some stories of what that looks like when parents just can’t do it all anymore.  And I wonder, because these kids were only a few years older than Ben is now.  And these parents are strong parents.  They say caring for a child with a disability/special needs ages a parent faster than fast (6 years to every 1 year of care in fact).  After that meeting I saw it in person.  And I admit that it scared the crap out of me.  These folks had partners too…so I was double scared.  I came into that meeting for the first time in months having some extra strength to give and support I could spare for others.  I was honored to listen to their stories and shed my tears for them and their families.  I was deeply affected by the grace, humor, love and dedication these Moms showed in being open and honest.  I was still crying a bit the next morning.  

Saturday rolled around and I took Ben back to the Autism Center for a Halloween event (read:  low key).  He did pretty well and kept his costume on for about 20 minutes total before finally ripping it off.  He even got the concept of taking one piece of candy and putting it in his ghost pail.  And I’m not sure exactly why, but his behaviors seem to be pronounced this weekend.  Maybe it’s the extra Iron he’s on now to bring his levels up?  It just seemed like he went a little further into the moderate to severely affected side of Autism from the slightly to moderate side.  The needle pushed a little to the left.  The high pitched screams were rampant.  The lack of eye contact was noticeable.  The echolalia was pronounced.  Getting stuck on words and repeating them over and over and over almost like it was an OCD tick of sorts.  The hand movements and gestures and flapping.  And as I sat in the room with all the other kids on the spectrum, I was overwhelmed.  I always think that Ben wouldn’t blend in with the group of kids on the moderate to severely affected side of the scale.  Today he stood out in that he did blend in, maybe more so than others in fact.  It breaks my heart when that realization comes in but I have to remember that it’s just that day and tomorrow will be different yet still.  

Sunday saw us heading to the beach for an impromptu photo shoot as the weather was nice for a few hours.  I took 324 pictures to get about 15 great ones.  Thank goodness for digital cameras!  Autism seemed to have a hold of him more today as well.  It wasn’t too bad at home, but as soon as we were in public it got him again.  No responding to his name.  At all.  No fear and running into the ocean over and over.  Loud loud sounds and screams.  Never ending energy that had others commenting as they observed.  Just about IMPOSSIBLE to get eye contact for a picture.  I wish we could have one picture of the two of us with his eyes looking at the camera and smiling along with me but he’s always looking elsewhere or it looks like (because I am) I’m holding his head/body to make him look up.  He’s sleeping better with the Iron supplements now.  But then this.  And at the end of the day, I have to wonder if this is all just a problem for me and not him.  He doesn’t know the difference between how he’s acting and how he should be acting and who’s to say others are right to expect him to fit into a mold.  What if he’s using more of his brain than the rest of us do and therefore behaviors are different?  What if we are the ones who are behind? Why am I wanting him to fit into a mold that society has built up?  I wouldn’t care if he didn’t fit in because of his fashion sense, sexual preference, music tastes, philosophical meanderings, so why does the Autism make me want to work so hard to “correct” it.  Why not let him be and accept?  I don’t know right now, but it’s something I want to think upon further….

Big Strides For A Little Man

Ben has been in therapies now for 6 months.  And when I think back to even further, in Jan. 2012 and look at where he is now, I’m floored at his progress.  In January I didn’t even know for sure what was going on, just that he was struggling and way behind.  By February, I was having him evaluated by the birth to 3 program and also on the waiting list at Seattle Children’s Autism Center for a diagnosis.  We were lucky to bypass the 6 month waiting list with a cancellation and by March we had an Autism evaluation.  On April 12^th, 2012, our world…or maybe just my world changed dramatically.  I’m sure every parent goes through that exact moment when everything hits the fan at once.  Other things were disintegrating in other areas of my life as well.  The timing of it all was enormous.  The boat was sinking and people were getting out leaving Ben and I alone in the boat to try and float and survive.  That’s what it felt like.  You hear the diagnosis and see the behaviors and assume the worst.  You think life is over and drastically changed and doomed in some ways.  I started Ben in therapy programs, not very hopeful at all but having to do your best to get every available help possible.  I remember the first time I saw the “special needs” classroom.  I was horrified that my son had to attend and be in that school versus the wonderful Waldorf School I had found for him.  In many ways while these therapists and teachers were my lifeline and Ben’s, I very much resented that he had to be there in the first place.  I went to the first class and then didn’t return for many months while the nanny took him to class and therapy while I worked.  I started to drop in every few weeks with more frequent communication with his therapists.  Every time I saw HUGE steps from the last time I had been in the classroom.  I also saw a lot of what Ben was trying to communicate to me at home that I didn’t understand but made sense once I saw him in speech class or occupational therapy.  ABA therapy showed me that he’s very smart and incredibly stubborn and gets bored easily or not engaged.  Cognitive preschool showed me that he had emerging social skills.  I became so proud of all the work Ben was doing every single day.  I don’t remember being two myself, but I’m sure my days were fun and carefree compared to hours of “work” in therapy every day.  I was very much in awe at his determination and intense desire to work hard and improve. 

Today I sat down with his therapists and teachers 6 months down the road.  Today we celebrated his tremendous progress.  Goals we wrote down thinking he “might” make them within the year, he had smashed in 6 months.  Only 2 big ones left on the list of about 30 goals.  Responding to his name in some form more than 50% of the time and saying “my turn” when he wanted to take a turn with a toy/song/etc.  Incredible.  Lattes all around!  This round is on Ben!  We set up some new goals for him for the next 6 months, again sounding like they will be impossible to achieve.  Things like: strings 2 and eventually 3 words together, follows directions with 2 steps and maybe eventually 3 steps, engages with other children rather than just observing them and playing around them.  I know these may seem like simple things to the typical child that they learn easily and move right on by, but for Ben it will be tough and will take 6 months of therapy to get there most likely.  Ben has to work so hard just to get through his day and harder to do it the way we, as a society, expect it to be done with all the noises and distractions that living entails.  He’ll do it.  I know he will.  I know I will help him as will every member of his team and his nanny.  He has to succeed with so much support and help.  We would all thrive with this much support and help, right?  I wish everyone had this kind of support to get through life.  We’d all fare very well at the end of the day. 

I’m so proud of my son.  So proud I could burst each and every day. 

Hamma Hamma!

The weekend went into a different direction and we are staying home again to clean and save.  While we were taking a break, I took a video of Ben saying his new word, "Hammer".  He says it "Hamma Hamma!"  It is hilarious.  And if you listen closely he calls himself "Ma" when I ask if he's Ben.  And you got a "bye bye" as well.  A great little snippet.  He's constantly moving, so apologies for the shakiness!  

We've had another few nights of middle of the night raves.  I need to start bringing out the glow sticks to make that party much more fun:)  Ben is on an upswing with Autism behaviors besides the sleep issues.  We are having other struggles right now.  Autism is basically breaking us financially paying so much out of pocket for therapies (ABA therapy).  And I know that other families have it much much worse, I've heard stories from others that make it look like we have it made and others that I'm envious of for medical coverage.  I'm trying really hard to figure out how to make this work.  But I have to admit, there are big decisions afoot with regard to the house and belongings.  And career.  Time to go sort some of those things out...

Oh Neglected Blog…I apologize…

You’d think there would be more time to write on the weeks when Autism is coming in like a lamb instead of a lion.  But alas, here I am after having thought about a million posts but have been too busy to write them up.  Ben has had a busy week.  He’ll be getting his tonsils and adenoids taken out soon (before year end, waiting on the surgery date still) as well as a hearing test while he’s under anesthesia because he can’t relax enough to have one awake.  He also had a surgery when he was 6 weeks old for Laryngomalacia that has to be repeated.  The hearing test will take 1-1.5 hours alone!  The rest will take an hour total.  Long surgery for him.  But it will help his sleep apnea and hopefully also speech and developmental delays.  Then we had to go over to get some blood drawn (first time he had a blood draw).  For the first time I was disappointed in Children’s hospital.  The man who took the blood was a whole story and then they had us waiting for an hour longer than we needed to for the blood draw and after all that, we find out that Ben has to give a Urine sample.  Oh, and here’s the bag to collect it (except now we’ve been there 3+ hours and he missed his nap and now he’s asleep on the nanny’s shoulder).  Long day.  Day before he was at the burn clinic again getting his burns rechecked from the eczema incident last week.   His face looks good but his skin is going to be super sensitive for a very long time to all kinds of new things we’ll figure out along the way!  

While we got decent sleep for 2 nights this week, I’m still exhausted and have bags under my eyes.  But I’m happy and so is Ben.  I took him to lunch before his ENT/blood draw and for the first time without the iPad to keep him occupied with a movie.  He did GREAT!  I was amazed and impressed.  He didn’t have any meltdowns or high pitched screams that can bring a room down.  No hitting his head on the table or hitting/pinching/biting me or himself.  He just ate his lunch and then used his napkin to “clean up” as the bill was paid and we got ready to go.  It felt surreal.  I hope it can be replicated.  Fingers double.  Super. Quadruple.  Crossed. 

He also had a lot of interaction with other kids this week where he didn’t know exactly how to interact, but was very curious about other kids and that’s a big step.  He just goes up to them, crosses his hands behind his back and bends over to look at them/or up at them with curiosity and then toddles off.  But it’s a step. 

The little man endures a lot each week.  Even if it’s just therapies and regular old autism.  This week had too many doctor appts. and he still pulled through well. 

Pumpkin patch this weekend with my good friend Julie and her family.  Looking forward to it as we haven’t spent any time together in over a year.  Time to refill the happiness tank with quality friend time.  Have a great weekend!  

Night Of Too Many Stars!!!

Watch and donate what you can!  And if you have cable, we'd love to come to your house and watch with you:)  

http://www.comedycentral.com/shows/night-of-too-many-stars 

And hey...TOM HANKS is on the show!  My secret celebrity crush!  

Enjoy yourself (It’s Later Thank You Think)…..

What a few weeks it’s been, but what a bump in the rump I seem to have gotten today in motivation.  While things haven’t veered greatly in any particular direction, I’ve been gently reminded that I’m the “tough” girl that gets on with life fearlessly.  And it’s about time I do that.  It’s time to make the changes that bring happiness and stop stalling.  There are things that aren’t going to change with certain aspects of our life.  Autism isn’t going anywhere.  Insurance coverage where I am currently isn’t changing for a while (even though my fight with the insurance companies is in full gear), so in the words of my very inspirational coach from cycling year ago said “if something isn’t working…change it.  Try something new and see if that pans out.”  And it’s time.  Motivation is high.  Focus is set.  I believe in me to get me where I need to go, I oft come through for myself no matter the goal or objective I set in my life.  6 Ironman triathlons in the bag.  Cat 3 bike racer.  Former owner of my own business.  Single Mom extraordinaire for best little man in the world.  Crusader for Autism.  Living in awesome cities on my own at a young age like San Francisco, Seattle, Dallas.  I can do this.  I can do this.  (I’m going to have to let Ben know my plans and that we’ll have to get maximum sleep to make the best use of my time coming up!).  Here we go…because it’s later than I think and I want to squeeze as much life into the runway left in front of me and Ben as I can.  I want it to be a celebration of good and happy.  Let’s get to it!

http://youtu.be/qSm2llQLCH4  

It Ain't All Roses...

This weekend was hard.  Sleep was hard to get nailed down and communication between Ben and I really faltered.  While I distracted myself with a lot of cleaning, by bedtime tonight, I was cracked.  I just had to have a cry.  In the past, Ben would laugh at me when I cried.  He didn't seem to understand emotions.  Tonight it was different.  As soon as I started crying, he got a look of panic on his face and started crying his little eyes out.  He jumped down out of my bed and went over to a corner and just cried and cried and it looked like he was very much afraid of what it meant that I was crying.  That sucked.  I don't want him to cry (anymore than he already does in his life).  But I also needed to have a good cry.  I am swallowing up myself and everything I feel because I don't want him to be afraid of me or my emotions.  I tried to explain to him why I was crying and that it didn't have anything to do with him, but it didn't seem to help too much.  It was just the worst feeling in the world.  Rock.  Hard place.  He remembers so much, so much that I feel like he will even into adulthood, that I'm so careful about keeping it together around him the best I can.  He has had such a hard life already and has a lot of obstacles in front of him.  I don't need to add to that pile.  And yet I also recognize that I have mountains of unmet needs myself.  And I'm not sure how to address those without taking away the reduced time I have with him after working all week.  Most days I feel like the concept of "I" doesn't even exist any more.  My hobbies are gone, my interests are adverted towards becoming an expert on Autism and everything it entails and my time is engulfed by efforts to help Ben's life with Autism (insurance, school, legalities, etc).  Ben is in the Project DATA study as the child in the reduced hours side of the research (state funded rather than the full 25+ hours at the UW).  We have to go in every 3 months to be assessed for the study.  Ben has to take a series of tests as do I.  I have to sit down at a computer and take an hour long evaluation about his progress.  At the end, they ask questions like "Do you feel like it's harder to be a parent than you expected?"  "Have you found yourself no longer having time for your interests/hobbies?" and "Do you feel like your focus is solely on your child rather than yourself/marriage/partner?"  I find myself answering "Strongly Agree" over and over.  And I notice that so many children on the spectrum only have one parent.  Why is that?  

He's asleep now and I should be too....