March 22, 2020

Hope For AutismDedicated to Helping Children with Autism

Aug 27th Good times…

Life is an interesting beast….friend or foe?  As a mom to autism I generally feel foe, but shining moments of friend are coming through more and more.  We are still commuting to California each week for MRT, which is challenging but worth it.  William is continuing to make gains.  Progress is slow, it’s an uphill climb for sure, but he is moving up.

His jumping has gotten so out of control, we changed things up this weekend with an intensive behavioral intervention plan.  Literally we take shifts to engage him, redirect, etc.  Not even for 5 seconds is he allowed to jump.  I am amazed at how he understands me–I told him I knew he felt like he really needed to jump, but that he just can’t anymore.  (I was just trying to explain ‘why’ to him…obviously just telling him he can’t jump isn’t going to work for a child who has an incessant stim). We will just find something else to help him…  He has complained that his feet, legs and hips hurt so much, it just had to stop.  He understood what I told him, and each moment he starts jumping again we are right on him, redirecting to toys or other activities.  Honestly he doesn’t even have the chance to hardly start.  I can’t believe in 3 days how much less he’s jumping.  I can actually see him trying to walk calmly, slowly instead of jumping.  He literally is trying to self regulate.  AMAZZZING to me.  A miracle to me.  I’ve prayed my brains out for help to know how to help him…and the answer came plain and clear.  And yes it will take a while, and yes it’s exhausting, and yes I get absolutely nothing done.  In time I know he’ll be able to fully self regulate without the intense intervention on our part, slowly we’ll be able to fade back.  But until then don’t come over to my house or you’ll see dishes, laundry, and toys everywhere.  And I mean everywhere.  And who knows what else.  Although as for the laundry, my saintly parents just showed up last weekend while we were at speech after we had gotten home.  To my horror they gathered every stitch of clothing in the house and took it home to wash it for me.  They are always showing up when we can go no further.

Seriously? Doesn't get cuter than that...

Seriously? Doesn’t get cuter than that…

I’m a strong believer in many forms of aba therapy.  This summer, mostly attributed to MRT, William is learning more from his natural environment than he has been capable of before.  I do a lot of prt (pivotal response treatment), and some table work and discrete trial, but now I spend a great deal of time as well just out and about.  The world is just a huge language session waiting to happen.  We comment on everything, ask questions about everything…  Today we went to JoAnne’s just because I knew there would be Halloween decor out and it would be a perfect opportunity to start teaching William about Halloween, costumes, etc.  We spent an hour in there chatting away, and on his own this boy picked up hats and tried them on.  This is the boy who hates anything on his head or face….intolerant of hats.  It really was amazing and so much fun.  He tolerated them quite well and obviously felt and knew he was the cutest thing on the planet.  He did have an issue with a headband that was just too tight on that large head, but other than that we had a fabulous fashion show in the isle of the store.

He’s holding his crow, I’m holding my owl…he understands funny faces now! It’s really a huge deal that he’s capable of doing this with me.

After our hat fashion show we moved to the next isle where there were materials to make fall wreaths.  Who knew stuffed, very live looking birds would be so enticing?  We had 15 minutes of fabulous pretend play sitting on our bums…I had the owl, William had the crow, and we were playing chase.  That’s his favorite way to pretend right now, ‘chase’.  It’s the first kind of pretend play he’s really initiated on his own recently.  I’m sure we were quite silly looking, but it was a wonderful time to just be together doing some therapy without him knowing we were doing therapy (:

The night ended with us back at the hotel, eating dinner in the lobby and working on programs.  He earned 3 red gum balls by the end of our session and he was one step closer to understanding sequencing and 3 steps closer to total mom annoyance.  Poor kid, I know he loves me but he was d-o-n-e by the end when I was having him write.  So we called it a night and came back to our room to get ready for bed.  We switched hotels this week because it’s cheaper and closer to MRT now that the busy season is over, so our room has 2 beds again.  Our old one had one so William and I have been sharing for over a month now, which usually does not happen.  Ok never happens.  But we’ve grown accustomed to being cuddle buddies while in a hotel, so when I tucked him in he said ‘come lay next to you’.  Meaning ‘come lay next to me’.  So we snuggled in and he finally fell asleep.  And the second bed just sits empty…  Old habits die hard I guess, snuggle lovin’ will always win out in a hotel.

He just fell asleep as I took this...I secretly love breaking the rules in the name of 'we're in the hotel' and cuddling with my little bestie

He just fell asleep as I took this…I secretly love breaking the rules in the name of ‘we’re in the hotel’ and cuddling with my little bestie…

 

Best Moment of the Day: Him being interested and initiating on his own trying on the different hats at the store.  Not that long ago he wouldn’t have even looked in their direction.

PROS: Eating is getting better.  He wanted to eat my dinner tonight (which he couldn’t bc there was dairy).  I’m positive that his refulx was a strong component to his eating issues.  We still work very, very hard and it’s still a fight, but often he’s more willing on his own to eat.  He’s been on meds for a week and a half now and I see a CLEAR difference.  He willingly ate peaches for the first time this weekend.  Asked for eggs tonight to dip into my salsa.  What??  Engaging more.  Less jumping.  Saying hi a lot to random hotel strangers.  Very affectionate.  **As of yesterday he has all of his phonic sounds learned to the alphabet!!!**  He is learning and processing faster than he’s been able to in the past.

CONS: Increased engagement means a frustrated kid sometimes if he doesn’t understand something.  Screaming/meltdowns.  Very opinionated (actually not a con at all, it’s just that he can’t work through flexibility yet).  Needing such intense behavioral intervention for the jumping/stimming.

This is hard…so so hard.  I feel like I’m in this battle for his future and though I have the moral support of loved ones, and Christ who is my total support, it’s exhausting and crazy hard to be on the ground with it 24/7 doing the work.  However I am so grateful for the continual progress he’s making, that he’s moving forward.  And I know he will continue to do so…

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Aug 20th (No Title)

Today we had another EEG here at MRT.  I’ve been really anxious to see what Williams current alpha wave looks like scientifically, based on my personal observations of what he’s doing right now.  Objectively there are great and hard things happening on a daily basis.  His language is foremost continuing to progress.  I feel like I know William better now than I did 4 months ago because in his way, he can tell me what he wants and doesn’t want, what he likes and doesn’t like.  One of the programs we’re working on right now is teaching him to identify things he likes…it’s always a process but he’s certainly learning.  And he has the language to support it which is amazing.  All I know is that Ben and I have to hold on for dear life with this kid because he is OPINIONATED.   And he’s got a stubborn streak that I’m sorry to say he likely got from me….he’s definately got some Norwegian genes going on!  When I’m particularly stubborn Ben calls me ‘Norwegian Sonja’.  Well we now welcome ‘Norwegian William’ to the world.

This kid may have an opinion, but he is also the most tender, loving sweetheart ever.  Another improvement I see with him is his increased ability to show love.  He has kissed and hugged me more in the last 2 weeks than I can possibly count.  It’s so obvious that when we’re out and about people will comment on it.  I never take these moments for granted….ever.  No matter what I’m doing or who I’m talking to, if he comes in for some love, he gets it.  These moments calm both our souls.

Some challenges I see right now are processing issues.  Sometimes he’s cognitively far improved, and sometimes he’s just somewhere else.  It’s unpredictable and I never know who we’re going to get.  His stimming is increased, and though he does have language, it’s often jumbled and words and pronouns are misplaced.  It’s not like a typical child who is ‘catching up’.  He hears and processes everything differently, so making sense of language in his mind is a colossal challenge.  And on the subject of ‘catching up’, really not the greatest idea to tell parents “oh he’ll just catch up”.  Intensive therapy and intervention has nothing to do with catching up.  Not with a severely autistic child at least.

Which brings me to his EEG report today.  It made perfect scientific sense of what we are seeing.  The alpha wave targeted is much more present now than when we started MRT, which accounts for his increased language and cognition.  But the other waves present are pulling hard, taking away from the targeted wave.  Literally it’s a game of tug of war in his mind, which is why I’m seeing amazingly lucid moments and then processing issues.

He is responding, just slowly.  I feel like this is his life…he responds just enough to always keep us going and give us hope.  But we are always fighting that uphill battle.  Autism Spectrum Disorder is just that….a spectrum.  Kids range drastically in how severe they are, some mild, some moderate, some severe, and everywhere in between.  Often children with moderate to severe diagnosis fight that slow, uphill battle.  Good thing I’m a warrior because though I don’t love this kind of fight, that’s exactly what it is.  A constant fight, a constant battle.  Some days I feel we’ve lost, some days I feel we’ve won.

We are continuing MRT, not sure for how long, that is up to William.  But I do know that I have no limits for him.  I have every hope of success. And I’m not exactly sure what ‘success’ is….I do know I want him to be happy, to enjoy life, to be able to function, communicate, get a killer education.  Yes, I said it–I want him to go to college.  Hard to see now, but its possible and if he wants to, we’ll help him do it.  I would be lying if on hard days that hope is hard to feel and see, but looking at how far he’s come since his diagnosis till now, he is amazing.  And this is just the beginning.

Oh you know, just chatting to whomever he called by pushing all the buttons.

William had his best pretend play of his life today.  While we were in the waiting room, he actually initiated some play with a tree and a horse.  I got a hippo to join him, and we proceeded to race our animals together.  Then out of nowhere he starts having the animals do things  that he does and likes.  He would take his horse to the hot tub, down the slide, to eat taquitos….  It was pretty amazing.

Best Moment of Our Day (so far): In a meeting with Dr. Jin I let William play with ‘FLARP’…that putty that you push into it’s container to make sounds that resemble guys in a locker room.  Seriously I kept trying not to laugh, but it was the only way I could keep him busy while trying to listen to Dr. Jin.  There we sat, making farting noises for a half an hour.  Pretty awesomeness.

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The endoscopy entry far below was last week, and though I wrote the entry about it last week, my hotel lost internet and I was in the dark for days.  So for journal’s sake, this is just going to be a long post.  I will say that although commuting to California for MRT every week is somewhat difficult, we are finding a routine and it’s working.  William is continuing to make strides faster than he would have otherwise, and his language is coming faster and faster.  I’m shocked at how opinionated he is…I guess I always knew because he would get upset, I just never knew why.  The kid knows EXACTLY what he wants to do and when.  I’m learning his likes, his dislikes, a little even of what he’s thinking.  Language is so powerful, it’s amazing.  I will never ever ever ever ever EVER take for granted the words that are now coming from his mouth.  Hard work, science and miracles are combining to continue to unlock this precious boy…

Seriously the best pic of the day…such a cool and fun moment these two had together

 

 

William turned 4 on Saturday.  This marks a new and terrifying stage for me…it means our window is closing.  It was so nice to be able to say ‘he’s 3’…because in the back of my mind that meant we still had time to make as much progress as possible while he’s young and his brain is still developing.  Four years old is still young…but another year is gone, and facts are facts.  This scares me, but I have to put that in the back corner of my brain reserved just for me, and forge forward loving and teaching and enjoying my now not so small bundle of joy.

 

 

He loved this one…

A few weeks ago when we started telling William his birthday was coming, I was trying to probe what he would like to do or what he wanted.  I asked him if he wanted balloons, and he said “I want birthday balloons…yellow and black and orange”.  And in talking about food as I gave him options, he was adamant that he wanted “birthday taquitos and birthday donuts”.  Literally every time we talked about his birthday, this is what he would tell me…as well as wanting a “birthday party”.  I’m sure he didn’t understand fully what a birthday party was, or really what a birthday meant, but he knew it was his special day, and his loved ones were coming over to swim with him and eat birthday taquitos and donuts.  (Though the DAY BEFORE, after I had his gfcf donuts ready, he started literally begging for birthday cake instead.  Over and over.  I couldn’t say no, I mean the kid wanted b-day cake!  So I baked one and he decorated it with sprinkles….a good call for sure).

 

It really was a great day, though I would be lying if I didn’t say I wasn’t apprehensive about how he was going to react with all the people at his party.  I didn’t want him wigging out and refusing to open presents, sing happy birthday, eat cake, etc.  If you know our past you know all of this has already happened, and so although William is doing ammmaazziinngg, his ability in social situations is still highly unpredictable.  And this wasn’t just ‘social’, this was crazy cousin-ness.  It was awesome and so fun, but a lot of clamoring on William opening presents, running through the house screaming and yelling and having a great time like kids do.  This is quicksand territory for us, and it unnerves me because I’m always ready at any moment for his meltdown.  I will say that the birthday boy proved to be a champ.  He had some brief moments, especially during presents.  The kids were so dang cute and were surrounding us so excitedly…but I could tell he was working hard to be in the moment.  We had to move fast to get through them, but he seemed to have interest in everything he received.  One of the best moments was when he unwrapped an alligator noodle for the pool, and he grabbed its face to nearly kiss it and said “it’s an alligator!”.  He was certainly invested and though interest waned near the end, we got through it.

My impression of the day was different from Ben’s and my moms.  They thought it was great and that he did very well.  I also thought it was great and that he did well, but I’m always a little sad, ok a lot sad, when I see him pull back from social situations.  He wants and lllooovvveesss his cousins and friends, but he totally lacks the skills.  We are focusing nearly everything into that right now, practicing, practicing, practicing…  But truly, as for now and hopefully forever, he is surrounded by cousins and family that adore him.  He is treated like a king by his cousins, and especially by the older girls who take a special interest in him.  I am forever indebted to my family for the unconditional love they show us and him, and that they take the time to reach out to the little boy who struggles reaching back…

Best Moment of the Bday: As we sang happy birthday to him, I reached down to pick up the cake to make sure he knew he was supposed to blow his candles out…but as I picked it up he bent over and started blowing…he knew EXACTLY what that moment was.  I was really surprised, it was plain awesomeness.

PROS: Loved being with his cousins, ate half a birthday cake all by himself (: , opened presents

CONS: Got extremely stimmy on the birthday balloons, they became a coping mechanism for him for sure.  We had to take them out of the room to get him to open presents.

 

RECAP:

 

Monday, August 12: I just have a few minutes, so here I go.  Yesterday was eventful.  Our hotel internet was down so I’m having to catch up this morning, but yesterday was really a full, long, and good day.  We were supposed to leave Monday morning after our GI appointment for MRT, but turns out William needed an endoscopy asap and unless we took a cancellation yesterday am he would have to wait way too long for the next opening.  So instead of driving to Cali we drove back home and spent the day at home.  Yesterday we were on a tight schedule, up early to Phoenix Childrens Hospital for his endoscopy then off to make the drive to California for MRT.

This is one of my favorite pictures ever because of the look on my dads face. Total joy being together

William did AMAZING at the hospital.  We talked about what was going to happen, and he really loves Dr. Montes; he was surprisingly excited to go see him.  He walked with me appropriately everywhere as we checked in and had to move from room to room.  His language is really fantastic for him, we talked about all kinds of things we saw there.  He didn’t get nervous until we walked into our room, and he started asking to go back to the car.  After a minute he was fine and we literally had SO SO much fun while we were waiting.  Ben surprised us and was able to make it, and my mom and dad did too.  William loooovvvees them so much, they played and laughed and laughed some more while waiting to go back into the procedure room.

I am shocked at what a beautiful experience we had in the hospital.  William was calm, and somewhat understanding that we were there to try and help his tummy.  We even practiced putting the mask on him so that he wouldn’t absolutely flip out when they put him on the table to put him to sleep.    I never knew hospital visits could be so great!

 

Practicing with the mask…

I didn’t tell him my parents were coming…this was his reaction…

My dad telling William he loved him “THIISSS’ much

My mom and dad are my real time heroes.  I always loved them and thought I appreciated them, but as a grown woman living my life now, I see them clearly for who they are.  They are the most serviceable, unconditionally loving two people I have ever met.  The fact that they just showed up yesterday to be with William and I was a perfect example of how they have always been there for their children.  Big deals and little deals, they were there, it didn’t matter.  Nothing was or is ever more important.  They have given their children the great gift of knowing, no matter what, that they love us and that they will be there for us always.  Never was there an important moment in my life that they weren’t there.  I’ve come to keenly feel their prayers, I somehow know when it’s their prayers that are being answered for my behalf. They don’t judge, as so many of us are quick to do.  They look to the heart and go from there.  Growing up they taught us, and then gave us the space to make our choices.  And they loved us and showed us that love in spite of our choices, good or bad.  Pretty amazing and I’m so grateful William gets to be a part of their world and scope of love and support.

 

Just sleepin’ it off

 

William has been under anesthesia multiple times, and it’s always a huge challenge coming out of it.  It’s pure craziness to be honest, and terrible to watch.  But this time was different, he woke up calmly, bravely and wanting to cuddle.

Waking up for some loves

No thrashing, no crying or screaming.  I really felt our prayers were answered and he was amazingly blessed through the process.  He heard my voice and started to stir, and after a few minutes we were head to head just loving on each other.  I love love love love love this boy so much, and am so grateful that a potentially difficult situation started and ended with happiness.

 

Best Moment of the Day: Waking up calmly from anesthesia…

PROS: Language continues to stabilize, so so loving, more singing together.

CONS: The ever jumping, screaming–a very short fuse right now.

 

 

 

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Short synopsis.  Day went well.  Spent 2 hours with Becky for aba speech, went right to another aba speech session with Nic, great full day with lots of work.  Hi language is really coming along.  Early this morning I was helping my mom, and brought William to their house with me.  Instead of the usual silence we heard little voices of William and Grandpa chatting.  We paused just to hear, it was the sweetest thing.

PROS: Language.  Understanding surroundings. Said ‘We’re at Walgreens’ when we were in the parking lot.  Lots of chit chat rocking for bed.  Ate honey on his toast instead of ‘sprinkles’ (cinn. and sugar).

CONS: Jumping.  Stomach pain.  Still obvious autism disconnect, though cognition is improving.  When asked his name today (which he knows), he responded “I’m 3”.  –somewhere in his brain he heard ‘how old are you?’ or just gave a rote response.

Best Moment of the Day: Great hugs and kisses at bedtime

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I really want to forget everything about today, but since I’m committed to journaling pros and cons of my life, I’ll record it.  This morning started out really off and strange.  William asked for eggs for breakfast, and a few bites in, a piece fell from his fork onto his lap.  It might as well have been a snake for how horrendously he reacted.  Screamed and screamed, refused to sit back in the chair, refused to eat any more (even though I could hear his stomach growling).  Whatever processing malfunction took place with that mere egg drop really took a toll on him and me.  An hour later I had forced a few bites of eggs, and he was willing to eat his toast.  I hate hate hate hate that I have no idea what is going on in his brain, that I have no idea what in the world would cause such a horrific friek out, out of nowhere.  This set the stage for the rest of the day.  All day we had run ins like this.  I found an awesome park that I love to take him to, he really loves it.  It has a huge big toy and swings with tons of grass.  When we first arrived he seemed himself, then 15-20 minutes in I was helping him climb the rock wall.  Suddenly he just got really scared, started shaking and crying.  We went to some yellow rings to climb through that he’s done multiple times by himself, and once on them he became terrified, started crying and asking for help.  I was already on the edge from all morning of battling severe autism who decided to grace us with it’s presence, and this return of anxiety literally sent me over.  We have worked so hard, so so so hard, we have sacrificed so much, to try and get through anxiety.  I got so upset, I still am so upset.  Yes it may be just a bad day, I have to remember to allow William that.  But what if it’s not?  And even if it is just a bad day, I don’t want to see anxiety in the mix.  It cut me instantly and deeply, and I lost it.  Every moment after that today I was not exactly a loving mother.  His screaming, jumping, meltdowns….everything was horrendous.  And I got tired of it.  I was done by noon and we both held on for dear life until bedtime.  I don’t like to be pessimistic, but the facts are that today was just that bad.  And I am just that upset about it.  Part of me wants to cry (which I already did a few times today), and part of me wants someone to break in so that I would have an excuse to beat someone up.  And I’m just as upset at myself for getting upset at William….how is that fair to him???  All I know is that I wouldn’t wish autism on my worst enemy, let alone my child, so I’m stuck in this place of trying to help him be happy in spite of it.  And today was nothing but a huge FAIL on my part.

I’ll be on my knees tonight, praying for some help and strength.  I have nowhere else to go, no one else to turn to.

We got a smile…I’ll take it.

Best Moment of the Day: I’m trying hard to think of one.  I was trying to capture ‘a’ happy picture of him in spite of ourselves, and at the park as he was running up the steps I told him to smile and he paused for me and said ‘cheese’.

PROS: I’m at a loss.

CONS: relapse in anxiety for the first time in over a month, processing mishaps that I have NO idea what’s going on, jumping-always jumping.  He was really locked up in autism today, a ton of stimming and I had a very hard time getting through to him.  By the end of the day there was no intervening, it was merely surviving.  If I’m being totally honest, I am really, really upset.  I am well aware of the ups and downs of autism, but what I saw today was so unnerving, all I want to do is numb myself to it.

 

 

I’ve been here before, hundreds of times when he relapses.  So I do know that the morning will come and we will have another chance to be our best.  To my future self: I wish I was stronger, better able to not be so weighed down by days like today.  I hope you are better now at it…

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Today was simple.  William’s tummy hurt pretty bad all day, so we didn’t go anywhere but MRT.  We stayed at the hotel all day and cuddled, played, watched cartoons, went swimming…  I hope to heaven we can figure out soon what is causing all this stomach pain.  It’s always been there, but has gotten progressively worse since this past spring.  We’re doing more testing, hopefully answers will come that will help.

In an attempt to sooth and relax his stomach I took him down to the hot tub this morning.  I didn’t want to push him too hard today because I knew he was in a lot of pain, but I did want to keep language going, so I talked to him a lot while he listened.  And since we’re going to be late to school in the semester I want to make sure we keep up on academics/letters/numbers, so I sang him the ABC song.  I asked him to sing it with me, and I would prompt certain parts as we went through it, then he sang it all on his own.  WHAT?  He knew it plain as day, from beginning to end, and I had no idea.  I think he’s known it for a long time, he just couldn’t get it out until today.  It really was a cool moment.  I believe I would be amazed at everything he understands and knows, it’s just hard to tell sometimes because his autism gets in the way.

http://youtu.be/OPrtpce8dXg

Best Moment of the Day:  I got a lot of love from this sweetie today, but during MRT I was leaning down to him while he was sitting in his chair; he put his arms around my neck and hair, smiled, gave me nose kisses and said ‘I love you’.  He held me there for 25-30 seconds with his arms around me, just being close.  I will never take moments like these for granted, because for a lot of years they were non-existent.

PROS:

The other day I told him I loved him and he said “I know”.  This meant the world to me, because for so long when he couldn’t communicate, and when he was deep in autism land, I had no idea if he knew what love was, or if he had that indescribable feeling of knowing his mother loved him.  And today, he was so funny–I was holding him literally about to tell him I loved him, and apparently he knows the moment, because he just looked at me before I said it and said “I know”.  (:   No matter what else we are struggling with, one of my main goals in life is for William to know deeply of our love for him, no matter what.  I am grateful beyond expression that he knows…

CONS:

Jumping, jumping, jumping.  He jumps so much his feet and legs hurt now.  I’m on him constantly, but he’s also constantly doing it so it still happens.  It’s so bad right now.  He actually let me rub his legs and feet tonight to help them try and feel better.  This has taken over all other concerns I for him right now–trying to find the root cause of this. We  just have to figure it out for him, but I do feel so helpless with this issue.

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He saw this sucker, went right to it, picked it up and said “it’s huge!” I didn’t even know he knew what ‘huge’ meant! I love this picture because he’s in a perfectly blissful moment

I am eons behind in recording the last 2 weeks of our lives, I am having difficulty determining where to start.  I guess I’ll start with our decision to continue with MRT.  We thought last week was our last week, in fact the weekend before, we moved everything out of our apartment and back home so that last week we could just jet home in the trusty prius.  However, upon evaluating his final EEG, it was clear that William’s brain had more room for  improvement.  The left hemisphere has responded well, but the right is not nearly as responsive.  When our options were presented to us of ‘stay for 1-3 months, or be done and go home’, I thought there is NO way to stay.  For a million reasons I wanted to come home, William wanted to come home, and Ben wanted us to come home.  But there is one reason that out-weighs the other million reasons, and that’s that it would probably still help our boy.  He stands to gain, and we’ve had enough progress this summer to know that more gains are worth the sacrifice.  This round of treatment, however will be a little different as far as real life goes.  He has enough under his belt that it’s not so critical that we stay here long term, so we will be commuting every week.  I’ve got my prius, and for a whopping $38 in gas I can drive from AZ to CA.  Monday mornings we’ll drive over (starting today), and he’ll have treatment every day except Friday.  One of the days of the week he’ll receive a double treatment to make up for Friday, so that Thursday afternoon we can drive home and have the weekend to be together as a family, do some therapy…..and most importantly (sarcasm sarcasm, but not really) for this kid to be with his Clancy.  I wish I was taking video when William saw Clancy for the first time in nearly 2 months last week, it was pure elation.  Imagine your child meeting Santa Claus, the REAL Santa Claus.  Well, that was our moment when those two reunited.  And poor Clancy hasn’t been allowed out of William’s sight since.  Never was there a dog so loved!

Seriously…this sweet face is as the ride was starting. NO ANXIETY. NONE.

MRT treatment has been a roller coaster, so many ups and downs, as with any therapy and dealing with autism, period.  But overall William’s language is really coming along, he’s more invested in his surroundings and is taking interest in others.  He is SO happy to better communicate, he gets the biggest grin when he got out whatever he was trying to get out.  He still struggles, but it is massively improved.  And the biggest gain we’ve had is the decrease in his anxiety.  Which leads me to two weeks ago.  When I started taking him to Disneyland in the course of MRT treatment, in the far, far far far far corner of my brain I had hoped that by the end of the summer we could attempt Pirates of the Caribbean (the ride).  That’s the ride that set him off last fall that he was never able to recover from.  That’s the ride that put us on a path of massive anxiety meltdowns.  We had pushed him enough and he had had enough success towards the end of MRT treatment that on what I thought was our last day here, we took him to Disneyland specifically to get on that ride.  I hoped he could cope, but I was still gun-shy.  We waited in the line and talked about how fun the ride was going to be, we did a good job prepping him for what was coming.  Then when we entered the building, that small, dark, cramped area with tons of people, I found my heart racing.  But this boy pulled through.  He waited in line, walked right up to the boat and didn’t even wait for the people to get off before he hopped on.  He was excited to see what this ride we’d been talking about was all about.  The only problem he had a few times was that it wasn’t going fast enough! He was able to not just ‘work through it’, but really enjoy the experience like anybody else.  It was dark, so nobody saw my tears of overwhelming gratitude for that moment.  Gratitude to our Heavenly Father who hears and answers prayers, though not always how we expect.

He is charging onto the ride, ready to go.

Gratitude that we have found a cocktail of treatments, doctors, school and therapists who have been able to collectively do their part in their expertise to help this sweet boy.

I’m not sure how long we’ll stay.  When his EEG evens out and signs of progression stop, then back to the Homeland we’ll go for good.  I was so caught up in the awesomeness of being able to come home every weekend that I didn’t realize that it may take its toll.  Driving over here today I wondered a few times how in the world this was going to go.  But it will go, and it will do well for my angel boy.

 

 

 

 

Really great moments over the past 2 weeks:

We were swimming in the backyard and when his cousins popped their heads over the fence he asked “do you want to come swimming?”.  They couldn’t hear him, so I told him to go up the steps to ask–which he DID. This was a great social and following directions moment.  Ben picked up his phone to check his e-mail and William told him “all done Daddy’s phone”.  Even kids who seemingly don’t ‘get’ things (which they do), don’t want their parents on the phone.  Tonight tucking him in bed, he said “turn the air conditioner” (he meant ‘turn off’–I got over zealous and had this place an ice box).  His eating is slowly improving, out of nowhere he asked for eggs for dinner 2 days ago.  He hasn’t eaten eggs in over a year.  He sat down with them and said ‘it’s delicious’ and has eaten them 3-4 times since.  What?  Who is this kid?  I prompted him through conversations on Sunday at church to our friends and my young women, and he was ELATED to participate with them.  He especially loves teenagers, he was around them non-stop until he got his diagnosis and we ended up in therapy non-stop instead.  His language knows no bounds, whether it’s in the car, Cali, or home.  I was worried that it would be place specific, but so far he has been able to generalize his skills.

CONS:

He is doing a ton of screaming at me for a first response when he doesn’t want to do something.  When I don’t accept that he’ll say it again nicer and calmly, but his go-to right now is a lot of screaming.  Meltdowns.  He keeps telling me his tummy hurts, so I know something’s still not right with his gut.  He tries to jump incessantly.  Because of his severely limited diet Dr. Bradstreet (whom I LOVE, and has changed the course of our lives forever) today after observing the massive jumping bean felt that we could help a lot of that with some supplements.  The moment he spoke that I felt good about it…  Hopefully that will help us, because it’s not just a behavioral thing…..it’s something from deep inside that’s pushing him to behave that way.  Have you ever seen veins pop out of muscular calves on a 3 year old?  If not pop on by, all this jumping has given William killer calves.

To my struggling friends, you know who you are:

I have been praying for strength and peace for myself, and for you.  I often feel like this weight of autism takes me to the edge, and though life is meant to be difficult, I believe that we as children of God are also meant to be happy.  It is the Plan of Happiness.  Not that I’m to frolick carefree along a beech all day, but this grief in my heart isn’t healthy, and I must let it go so that I can move on in my life.  I choose happiness, I choose peace, I choose acceptance.  I’m trying, trying, trying to make conscience efforts for such. The Lord answered my prayers multiple ways this weekend.  It is possible for us to have peace in the blackest hours.  His light is indistinguishable, it can thwart off despair, pain, anguish, sadness.  There is no other answer, no other way to a truly happy and fulfilled life except through Jesus Christ.  I know this, I’ve lived it and continue to live it.  To my old friend reading this blog who is dealing with a new diagnosis-I cried for you when I found out.  Your beautiful and pained words spoke to my heart.  I will tell you that it has taken me a very long time to find happiness again, I’ve been drowning in grief for nearly 2 years now to be honest.  Is that normal?  I don’t know.  I do know that the grief has been so poignant for so long that it has began to define my thoughts and emotions.  I am fighting back, I am choosing happiness, but there are 2 years of scars that have left their mark.  I know where you are right now, and it’s a dark and lonely place.  Just know that I have been there, and my loved ones and friends whom I hold so dear who have children with autism have been there too.  Grieving is part of the process, grieving for the life that you thought would be his, and yours.  But as you know, morning always comes.  The dawn dispels the darkness, even when the darkness seems to last a painfully long time.  Your grief is real, and I am so, so sorry.  There will be high’s, there will be lows, but Christ will lead you, will lift you when you feel you can’t go on, when you feel suffocated by your circumstance. And the joys that these angelic children bring are indescribable.  They are pure, and what an honor to be their stewards here.

 

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That’s right…those, my friends are jellyfish. Be impressed, because I am!

Wow.  Wow, wow, wow, wow, wow.  I’m just going to get right to the wow part and skip the first half of the day until later.  My dear friend recommended the Aquarium at Long Beach, so I decided to give it the old college try.  I’m always a skeptic however, because I can’t even count the number of trips to zoos, parks, aquariums, etc. where William rarely would even acknowledge an animal, its actions, the situation, etc.  Always, always he was stimming and aloof to whatever fun the kids around him were having.  We had talked this morning about going to an aquarium and seeing fish, etc. but not much.  We arrived, got our tickets and walked in.  Immediately on our right was a small, nearly pitch black room with really cool large tanks of fish, creatures, etc.  And it was wall to wall people.  We walked in and he was startlingly excited to go right to a tank to look.  I was surprised, but still half waiting for him to realize where he was, who he was surrounded by, and lose it.  Strangely enough I had to keep waiting–because it never happened.  On one of the walls was a 20 foot narrow tank of jellyfish that you can touch.  We invited him to come try it, and the only problem he had was waiting in the line to get to them.  No fear, no strangeness, no nothing: he reached right in and touched them.  He even tried to grab them.  He was so in love with the moment that we were holding up the line.  This is when I got teary.  It was UNBELIEVABLE to me that we could go in together and look at fish, enjoy them, and actually pet 20 jellyfish.  But it doesn’t end there.  We went from tank to tank, he was pulling us along because he just couldn’t hardly wait for us.  I saw for the first time in his life an insatiable appetite for his typical surroundings.  He saw it all for what it really was and like any other boy was ecstatic to see it, be a part of it and experience it.

We walked to a different tank where we essentially were in a tunnel and surrounded by sea lions and seals.  This was one of his favorites it seemed because he plopped down and started commenting on them as they whizzed by.  “That’s a big one”, and  “He went in the tunnel”.  I kept waiting for him to stim on the very obvious line that delineated the glass from the ground.  Waiting, waiting, waiting…it never happened.  It was really the first time he engaged with each of the sea lions, he not only referenced them which I would have been thrilled about, but he followed them with his gaze, back and forth, up and down.

 

 

 

This sting ray was bigger than he was.

Outside is an area where you can pet sting rays and small sharks.  I was astonished that he didn’t even wait for us (which is a bit of a problem, but I’ll take it for now).  He put his hands in the water, pet the sting ray, pet the mini hammerheads, fish, and other funky looking things.  Seriously?  Who was this kid??  As we made our way to the large shark tank he seemed excited that we told him that’s where we were headed.  Things went south pretty quickly though when he came face to face with them.  He startled and started screaming.  I wasn’t positive what set him off, so I asked him if he was nervous, which he replied “I’m nervous”.  We spent the next few minutes waving to the sharks, talking about them, talking about how when they’re in tanks they are are friends, that they’re not going to ‘get us’.  He still didn’t love it, but we didn’t walk away until he would calm down.

A few minutes after that we had a processing problem and definite misunderstanding.  I asked him if he wanted a snack, which he did.  So we were walking to a place sit down and eat.  He didn’t understand that’s what we were doing, and lost it.  Yells and tears.  I didn’t realize at first what his problem was.  In his mind I had asked him if he wanted a snack, and though he had said yes, in his mind I wasn’t going to give it to him anymore, I was going to go make him do something else.  In my mind I was looking for a place to go sit down to give him a snack.  Once we got that figured out, we walked very calmly hand in hand and found a bench in front of the cutest little seals ever.  We enjoyed the snack moment, commented on the seals and it was wonderful.  There are so many small moments in autism where one misunderstanding can turn into a blowup because of the mis-wiring in the brain.

Best Moment of the Day: Watching him eagerly and fearlessly approach jellyfish and pet them.

Future Scuba Diver

PROS: Walking into the building today….period.  Functioning well in a small, dark, crowded room.  Actually LOOKING AND PARTICIPATING AND BEING EXCITED ABOUT FISH, ETC.!  I can’t get over that.  **I WILL NEVER, EVER, EVER TAKE FOR GRANTED THE FACT THAT WE ARE NOW WALKING INTO COMPROMISING SITUATIONS AND FUNCTIONING WELL.  We’ve been trying to teach him the meaning of ‘favorite’, so in recalling his day he can tell us his favorite thing, or at least something he really liked.  We asked him what his favorite thing he did today, and had to give him options such as jellyfish, seals, sharks, etc.  He responded ‘pet the jellyfish’.  Apparently the kid really loved those creepers.  Did feeding therapy with chicken again.  Still having to force him, but he’s immediately chewing on his own now and even saying “it’s delicious”.  So why can’t he put it in his own mouth and not freak out?  Who knows.

CONS: Rough morning, I think he was just really tired and groggy from waking up all night….again.  And yes, in spite of Benadryl.  I was desperate for him to have a few good nights sleep before our EEG tomorrow, because lack of sleep and exhaustion clouds the results.  So I admit I gave the boy Benadryl.  It didn’t do a lick, either.   He is still a major flight risk, very much a game to him, but still ignoring the behavior and making the situation as un-pleasant and non-reinforcing as possible.  Feeding therapy.  I still hate it, it still takes life out of me, as I’m sure it does William.

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Blissfully clapping (:

I’m just not sure what is happening with this anxiety component of William’s autism, but it is dissipating…rapidly.  A few weeks ago when we went on the Racers ride at California Adventure he had a really hard time.  He was trying to be ok with it because it was Lightning McQueen, but he cried and didn’t want to go back.  We haven’t been back since, until today.  He was upset today not because he was scared to get on, but because we didn’t get on the car fast enough.  We buckled him up and he looked into my eyes and said ‘want to go up and down’.  He loved every minute of it–as we went into the tunnel I anticipated having to talk him through it a little bit, but I heard this excited little voice next to me  holler ‘we’re in a tunnel’!  He actually loved loved loved it, and when we finished he said ‘we did it!’.  Not one spec of anxiety was present, not one.  I have no explanation for this except MRT.  It is definitely targeting his anxiety.  I’m seeing families over here doing MRT whose kids are responding in different ways.  I am counting my blessings that I’m seeing the results I came for–specifically to eliminate or decrease anxiety.  This treatment seems to do more for the kids and other adults who have severe anxiety components.  They are currently doing trials for PTSD with military guys and are having some of the best results to date.  This is why I think the treatment may be working more for William than others, because anxiety is a huge piece of his autism.  It has been so debilitating, so life altering to have to help him try to live with it.  Suddenly he’s able to enjoy life more because he can see it clearer, perceive it more correctly, and somehow deal better with it.

Waiting for Aladdin to start…

We decided to go see Crush the Turtle, an interactive screenplay with Crush from Nemo.  It’s a dark room where kids sit on the ground together and parents in the back, and the kids are right in front of a large interactive ocean screen.  We filed in and sat with the kids, William was on my lap.  WE WALKED INTO A SMALL DARK ROOM.  HE SAT RIGHT DOWN.  No meltdown, no friek out, no terror.  I just don’t even have the words to describe what this means to me.  When people ask me if I could take his autism away, would I….and I would say yes.  A million times yes, because his struggle and specifically his anxiety is so painful for him.  I don’t know how many times I’ve tried to hold him through his sobs, how many times I’ve tried to talk him through it and he’s so far gone that he can’t even hear me or process me.  And today, today seemed that a part of him was going to be ok.  Crush asked the kids questions, and as they raised their hands, he did too….  The kids started clapping….so he did too….  I was floored that he was not only tolerating it but somewhat participating.  Last Fall when we were here we tried this, and had to leave.  And here we were, 9 months later enjoying it.  I’m a little numb from the disbelief that his anxiety may be this much decreased…  Time will tell if it sticks, but I do feel that I’ll just keep putting him in challenging scenarios so he won’t have a chance to get too comfortable.  I’m pretty sure I get the mean mom award.  Believe me, I want nothing more than to cuddle him in a blanket on my lap and do nothing but hug him, console him, kiss him…but that means negating his future, that means cutting his potential off before it even starts.  It’s very painful and difficult for me to push him sometimes, but in the long run it will be solemnly worse if I don’t.  And it will be my fault.  I’ve had to don thick skin to be an autism mom, that is for sure.

Many of you may remember that 3 months ago, nearly to the day, we took William to Disney on Ice.  You may remember that it was nothing short of one of the most hellacious experiences of his, and therefore our lives.  He was so massively horrified, he screamed, sobbed, screamed, sobbed…  He couldn’t take the people, the auditorium, the darkness, the noise or the lights.  It was absolutely too much for him.  So $120 and 20 minutes after we got there we had to leave. And not just leave, but leave our dear friends whom we had invited to come with us. Luckily they drove their own car. That afternoon I realized just how bad he had gotten, how much anxiety had taken over his brain and body.He’s had so much success with

I took this pic 60 seconds after walking into this dark auditorium. This same pic taken 2 months ago would have looked very, very different. There would have been tears, a boy on the ground screaming and a mom trying to hide her own tears.

decreased anxiety lately that I wanted to test him today, so we planned to go to the Aladdin show in California Adventure.  If you haven’t been there, it is a huge, 3 tiered auditorium with a large stage, etc.  It is exactly what you would see on Broadway.  The show lasts 45 minutes and characters come up and down the isles.  We only talked to William briefly about what we were going to do, then simply walked in.  Walked right in.  No screams, no tears, ZERO ANXIETY.  ZERO.  He plopped down in the seat next to me and started looking up at the lights, looking at all the seats, the levels, and the hundreds of people filing in.  Then he proceed to sit next to me or on my lap for the entire performance.  It was amazing, he was amazing.  It wasn’t a perfect 45 minutes, he turned to stim on my eyelashes a few times, but for the majority he watched, listened, and ate his snack.  I wasn’t taking him into grocery stores before we left for Cali let alone an Aladdin performance.  My phone was out of space so I couldn’t take video, but these pictures do only a small justice to his excitement to clap at the end.  He was so happy, and noticed everyone else clapping and joined in.  I walked out blown away, absolutely blown away that he was capable of handling that.  The Lion King is coming to Gammage this Fall, and I had dreams of taking him because he loves music so much.  After Disney on Ice I was so dejected, I thought it would be years before we would attempt it.  Well, Lion King here we come, because he is capable now.

 

Look at that awe and happiness. Pretty amazing in my book.

Best Moment of the Day: The look on his face and the energy coming out of his body clapping at the end of Aladdin–he was SO SO EXCITED.  Not only could I see it, but I could literally feel it in his body as he sat on my lap.

PROS: Continued signs of decreased anxiety.  Consistent language.  Improving ‘wh’ questions/language.

CONS: The stim fest continues, I can’t believe it has turned into a game–double whammy.  Still waking up nearly every night.

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And the stimming continues…largely because we realized today that the boy thinks it’s funny.  Everything is a game to William now, which is typical but making me crazy.  You can’t ignore stimming, but to reduce behavior he has to get zero reinforcement for it, zero attention positive or negative.  So trying to redirect him gives attention then he laughs and the cycle worsens.  Seriously?  This is a new phase and I’m confident in time and with consistency the behavior will decrease.

The Little Gym was full of stimming and giggling.  William was more challenging to engage today for sure, we had to be on him constantly in class.  Again we did feeding therapy for lunch at  Taco Bell across the street.  He had his tacos but I brought a few bites of chicken from yesterday.  I’m sure the workers there are so sick of us, maybe I should tell them there is no place else to go, but so far they haven’t approached me. So for now they are merciful. Today, however, a man who had just finished his lunch kept throwing me looks when William would protest.  I already knew in my mind what I would do and say if he got the nerve to say something.  Feeding just puts me in fight or flight mode, and I won’t publicize what I was ready for.

This is one of my favorite pics in a long time, because it is clear how at peace he is in what once was a terrifying situation. He is clearly simply happy.

William has been terrified of the ocean waves, these past few weeks have been really hard if we go with family or alone because he won’t go near the water, and if I bring him closer he screams and pleads ‘no water’.  Since he used to enjoy the waves, I knew that we had to work through this.  He had a misperception somewhere in that brain of his that we needed to clear up.  So I decided today was the day.  We talked all morning about going to the beach, how fun it would be, and every time he told me ‘no water’ but I told him yes, we were going to get in and have so much fun.  I told him how safe he would be, that we would hold him, that the waves weren’t going to ‘get us’ but that it was just like swimming.  Holy cow if we didn’t walk right up to the water, get in and have a blast jumping in the waves for an hour.  And when I tried to come out he told me to go back in.  What just happened?  Not sure, but suddenly his ocean anxiety was gone.  We came to the sand and played and played.  We built a little castle, dug a hole, and buried William’s legs in the sand.  We were pretending he was King Tritan with his little mermaid sand legs, since he is so fond of that movie right now.  He laid in the sand, rolled in it, rested next to Sam for a few minutes…3 weeks ago he was flipping out at the touch of it sand.  He wouldn’t go on it without his water shoes to keep it out of his toes.  It was a beautiful afternoon enjoying each other and actually having a great time. I wish I knew what was going on in William’s brain for a

Lovin’ being a ‘mer-man’

switch to go off like that.  What had he perceived before, and now suddenly he see’s more clearly and he can enjoy a typical situation on a beautiful afternoon?  I’m not sure, but I’ll take it.

 

 

 

 

 

 

We came home for dinner, and I again had chicken with some other yummy sides.  I invited Rocky up in hopes that he could be a motivator for William to eat the dreaded meat.  I told William Rocky was coming up for dinner to eat yummy chicken with him.  I only had to push a few bites, and suddenly he started letting me put it in his mouth no problem.  Each time he took a bite I gave a small one to the dog, and so forth until this boy ate a ton of it.  My amazing-est neighbors may wake up to a missing Rocky when we go back to AZ…  We will be doing chicken for one meal, lunch or dinner, until this boy will eat it without me

This pic is miraculous to me considering what happened 24 hours earlier. He is calmly letting me put chicken in his mouth… I don’t take this moment for granted, I am overwhelmed with gratitude that we had it.

having to force it.  Already it’s better, and I think it’s a blessing from heaven.  Heavenly Father knew I couldn’t repeat last night’s fiasco, so tonight was a gift.  Hopefully it got us over the chicken hump and the rest of the week’s eating will go somewhat smoothly.

 

 

 

 

 

My night last night was spent pleading to God for patience, understanding, and help.  I really want to enjoy this beautiful childhood of William’s, and I have moments when I do, when I absolutely love it.  I feel joy in what I’m doing, joy in motherhood, joy in that I’m on the path that was meant for me. As a person I feel whole and at peace with myself.  But I’m desperately trying to not feel so burdened, so weighed down all of the time.  His struggles live within me and it’s a painful flame, a constant flame that I wonder if it will ever go out.  I feel peace that I’m doing everything that can be and needs to be done to help William meet his potential, and that is one of the greatest blessings I could ever receive.  This burden, however, though is lifted at times when I feel I can go no further, I think is meant to go my lifetime.  It is my great teacher, my humbler, it is the thing that keeps me prostrate before my Maker.  I will live on my knees for the rest of my life pleading for my sweet boy.  I feel this also is just parenthood…every child struggles at one point or another.  Every parent feels deep pain for a child at one point or another.  We are all in this boat of loving unconditionally and getting through, of learning and wanting to ease the suffering of our loved ones.  At the end of the day, all we can do is our best, all we can do is turn the rest to Heavenly Father and Jesus Christ.  Somehow, someday, it will all be made right, and all will be well.  The challenge is in living until that day comes…

Best moment of the day: Seeing how peaceful and happy William was just laying in the sand.  He was so content, so at peace…no trace of anxiety at all.

PROS: Best beach day in over a year.  Dinner chicken went AMAZING.  Ate coconut yogurt.  Ate cut up cupcake.  Lots of commenting.

Related Blog Post: Physiological miscarriage **trigger warning** loss, trauma

CONS: Echolalia in full force–he’s often repeating things in his head, situations that he’s heard earlier, etc.  He says “that’s not funny” in a stern voice a lot…this is reminiscent of the first time I had to chase him down when he was laughing and running away.  I was so upset I told him ‘that’s not funny’.  Well he didn’t forget and apparently still thinks it’s hilarious, because he’s often laughing when he says it.  He’s an insane flight risk right now, really really bad.  He thinks it’s a game, he thinks it’s funny.  I grab him when I catch him and don’t say a word because he’s looking for me to do or say something–when I don’t look at him and stay silent, he fills it in for me and tells me ‘that’s not funny’ as he’s laughing hysterically.  This kid is killing me…

Related Article: Our Own Game of Life…Real Life as a Recently Widowed, Homeschooling Mama

I wanted to include this pic of William and Sam, because never would I have thought that he could and/or would lay on the sand to relax and feel the warmth of it, to recognize and enjoy a wonderful moment with his friend.

He met this sweet girl today and wanted to see and watch what she was doing…not that long ago he wouldn’t even have acknowledged her presence in the room, let alone show interest.

You might also find the following blog post interesting - Day in the life-Spring 2015