At school they do “social skills” and that often involves playing games and learning how to take turns and how to win and loose with grace.  We organized the game closet the other day so the kids could get into it by themselves.  I was a bit worried about the messes that it could cause but after a couple of days reinforcing that we put one game away before getting another out it’s been a huge success.

I woke up this morning to lots of giggling and laughter.  This was the sight I saw.

These two have been playing all morning and it’s honestly been heaven.  As they get older their bond as siblings has some shining moments that really warm my heart.  Sometimes there are a lot of fights because Gwen doesn’t always understand why Deeds will ignore her or doesn’t want her close (hugs can cause big issues sometimes).  Lately however the happy moments have been closer together.  I think it helps that Gwen seems to grasp a lot of the concepts needed for the games, even at the young age of 3 years old.  It makes her a perfect playing companion for her brother.  What a blessing.

While looking over all the testing that’s been done in the past three years since Deeds has been diagnosed with autism it is really shocking how much he has progressed.  He is an inspiration to us and it’s amazing to see him now, and to see how far he has come.  Our little man is a true success story, showing how early intervention, therapy, hard work and supportive family can really change some kids on the spectrum.  Change isn’t even a strong enough word, transform is better.

After the IEP Jeremy and I decided to hang out in the classroom and volunteer for a couple of hours.  With the last semester of school keeping me busy all the time it was nice to be back in his classroom and seeing him work hard.  He was a bit silly since both parents were there but the real treat for him was that Magpie got to come too.  She loved it and snoozed in the corner during APE.

It amazes me what a good dog she is.  I know that sounds weird but sometimes at home she is like any other pet would be.  You catch her snatching toast off the counter, chewing on something she shouldn’t (all our seedlings for the garden) and then in public she is the worlds best behaved service dog.  All business, and it shocks people when they see the silly lab at home versus the professional working dog in public.  Just like anyone she has days where even in public she isn’t on her game, but even during those days she is typically fantastic and just takes a little longer to pay attention.

I am really hoping this summer we can get some fun blog posts up since I’m not at the school full-time.  I know some people still check often to get updates on Magpie and Deeds so I hope to keep you all more informed.  Many supporters have turned into extended family for us and we appreciate you all.

OH and one more bit of amazing news for everyone, Deeds has been seizure free since December!  We are thrilled, and so is his neurologist.  We hope this means we’ve figured out his medication for the time being and it continues for a while.

Last weekend we were given tickets to Disney on Ice by an old friend of mine.  She even surprised us with third row seats and the kids were in heaven.  Since a Disneyland trip this year isn’t in the books I was hoping this would quench a bit of their Disney thirst but I think it may have added a log to the fire instead.

It was very cold waiting for the train in the morning.

Hear no evil, speak no evil?

Waiting to get into the arena.

We decided to take the train up to Salt Lake instead of driving and it was a huge hit.  Magpie wasn’t a big fan at first but like the pro she is, she quickly relaxed and enjoyed the ride with the rest of us and then slept her way through all the ice skating commotion.  I did have to laugh at one point when Jeremy was standing with Deeds and Magpie while I was purchasing a drink for the kids.  I turned around and there were no less than 5 little girls, all dressed up like princesses, talking to Deeds and petting Magpie (who was loving all the attention).  Deeds was incredibly overstimulated during the show but despite it all we had a great time, spinning and flapping included.

We did get a lot of great pictures that are pretty self explanatory.  Deeds favorite parts were when Rapunzel and Flynn flew and when the horse was ice skating.

Sister helped surprise Deeds yesterday by putting up the Christmas tree for the first time in a couple years.  Since I’m usually stressed about finals and then trying to handle how Deeds is going to deal with the holidays we haven’t put in the effort to put it up recently.  This year we think we are better able to handle how things go.  We have a plan. Our holiday game plan involves the unconventional skipping of opening all the presents Christmas morning.  Leading up to the “big day” when we get a visit from Santa we open a present each night.  Doing things this way keeps Deeds interested and not too overstimulated.  Last night our first gift opening began with the kids giving each other the gifts they picked out.  It’s the first year we’ve done a sibling exchange and it was a huge hit.  Deeds was bouncing and flapping to his heart’s content as his sister opened the gift he picked out for her.  The only hick-up we had, was when he felt the need to pick up each shred of paper and run it into the garbage, screaming for Gwen to “WAIT TILL I’M BACK!” before she could continue opening it.  Since she is three years-old you can guess how well that went.  Once we explained that we could just pick up all the paper at the end he stayed next to her squeaking and jumping for joy as she opened her prize.  It was adorable.

Today Grandma, a cousin, Gwen, Magpie and I went and watched Deeds school concert.  He was adorable.  Even when he just laid down at the end before it was all over.  He said later it was just too long.  After we got a visit in his classroom from Santa.  This year there were no tears and both him and sister loved getting a sucker and being able to tell Santa what they want for Christmas.  Even Magpie got a chance to visit the big guy.

Last night Daddy sat with the kids and they did Christmas letters to Santa too.  Thanks to the magic Gwendolyn sees this year in the holidays it’s become contagious for Deeds and made everything so fun!  So different than any other Christmas we’ve had before.

Primitive

The zoo was wild that day. Not because of the exotic animals we viewed, but because our son was over-stimulated by the chaotic crowds from the moment we stepped through the gate. My husband Jeremy and I had been preparing for the large family outing for weeks, showing Dieter pictures of the animals he would see and even telling stories about crowds of people. My sisters didn’t mention the trip to their kids until the day before and couldn’t comprehend why it was such a big deal for our son, requiring so much prep work from us so long in advance. I can give you that answer by using one word: autism.

Our Dieter, like many others with autism, has struggles with a myriad of sensory perception issues.  Sounds that are loud or surprising can cause an overreaction to an extreme degree.  For us, walking around the crowded zoo was like stepping into a war zone. The only reason we even attempted such a congested atmosphere was because we knew there would be understanding family there to support us.

Within ten minutes of passing through the gates, Dieter was flapping his hands.  The action was a warning sign to us that he was on the slippery slope we know as sensory overload. To an outside observer he looked like an overactive child, but to my husband and me he looked like a ticking time bomb.

Anticipating the explosion we walked from exhibit to exhibit with caution.  Intentionally avoiding the overly crowded zones seemed to be working well for us until we turned a corner and came upon the gorilla exhibit. It was intensely crowded.  As the rest of our family was about to move along to the next exhibit, the area cleared and there was a sudden lull.  The sudden calm allowed my little Dieter to walk up to the glass observation window alone.   He could undertake the task without having to worry about being jostled or touched by others. Neglecting the rest of our group, I sat and studied Dieter as he put his little forehead against the glass right next to the furry beast sitting in the shade on the other side. My son was peaceful for the first time all day.  As I watched my parents and siblings guide the rest of the children around a corner, I told Jeremy to go ahead with our one-year-old daughter. He understood my hesitance in disrupting Dieter when he seemed to be decompressing.  Giving my hand a gentle squeeze he turned and started walking after the rest of our family.

The glass was smudged and dirty.  My toddler sat with his piercing blue eyes silently observing the large primate on the other side. Slowly the massive figure placed his mud covered hands on the window, right at the level of Dieter’s gaze. I watched and waited for my son’s reaction to the attention. Holding my breath I braced myself, worried that the sudden change in my son’s visual field would trigger a large meltdown. With all the willpower I could muster I stood back, watching and waiting. Dieter carefully placed his hands on the smooth surface of the glass.

My son, who’s constantly moving and rarely makes eye contact, just sat frozen and stared into the large brown eyes on the other side of the window.  The gorilla moved one hand down, directly opposite of Dieter’s. While the curious children who had begun to take over the space giggled, their parents pushed them closer hoping the animal would have the same moment with their offspring too. These other children showed their underlying fear as they flinched away from the huge moving hand. My child just watched, unwavering, unafraid. A tear slid down my cheek as Dieter smiled; a small sincere honest smile. It was a gentle grin that spoke far more words than I had heard him mutter in his short life. My young child, who screams at most human touch and interaction, connected with a primate on a level I will never fully understand.

I wish I could say that the tears I shed were out of pure joy, the honest truth is it was a mixture of emotions, which included pure agony. For three years I had tried to connect with this child on every level I could possibly think of. Selfishly I wanted nothing more than his pintsized arms to circle around my neck while he spouted proclamations of childlike love. Instead I had a son who couldn’t speak, and would throw tantrums and fits that seemed to last eternities. These episodes were exhausting for all of us, often leaving my sweet husband and me in tears.

Doctors and therapists gave us words for what was going on: autism, periventricular leukomalacia, epilepsy, and mild cerebral palsy. The only words I could initially think were: different, broken, wrong and disabled.  Parents frequently say that when they received the diagnosis of autism for their child, they were sent off with very little hope and very little information.  We often feel lost, navigating an unknown ocean without stars to guide us or a map to show the way.

In family pictures we would try and hide the fact that he was often fighting us when we held him, attempting to make everything appear perfect.  I would hope that others wouldn’t notice his blurry hands and feet showing his constant movement.  I altered pictures to hide the tendons on my hands that would bulge as I strained against his adult like strength. I was more concerned with how others perceived us than I should have ever been. I’m ashamed now to think back on all this, but in those early years all I could think about was how much I hated autism and what it took away from me.

Focusing back at the scene unfolding in front of me between Dieter and the gorilla, at the time I felt unexpected rage course through my veins.  This was a tremendous breakthrough for my son, but I just wanted to scream.  At that moment I hated autism more than ever.  The only thing that I felt more fury for at that moment was the primate.  That massive, filthy, smelly gorilla was on the receiving end of attention I desperately longed for and sought for three years.

Minutes felt like hours, as the world moved around this odd couple. I started to get irritated parents shooting me looks that spoke a thousand words: why don’t you move your kid so ours can be with the gorilla too? I ignored them, trying not to let them see the pain or tears in my eyes. They could never grasp the earthshaking experience that was going on.

Since we stopped the crowd of people had grown significantly. Before long, the grilling sounds from all the people trying to capture the primate’s attention reached Dieters ears. People were pounding on the glass, yelling at the gorilla, shoving to get a better view. He couldn’t process it all and I soon realized we were in trouble. My son’s familiar deafening screeches burst through the air.  Dieter covered his ears to drown out the noise of the people around him. The shocked crowd watched the formerly serene boy. Rhythmically, Dieter repeatedly hit his forehead into the glass.  Quickly I jumped forward to intervene.  As I pulled him from the window the crowd turned back to the glass.  Retreating from the scene, the gorilla quickly ran over a small hill away from the noise my son was making.

At this moment I was glad my son didn’t seem connected to reality. Comments from other parents and onlookers increased the tears that had been rolling down my cheeks. Scooping up Dieter, I turned to leave. Moments like this are why we avoid crowds. Jeremy and I have become masters at watching for warning signs of overstimulation so that we can spare others the trauma of his violent reactions.

Dieter looks like any other child.  Many of the disorders he battles are considered “invisible disabilities.”   To his detriment, he is also quite tall and is often assumed to be older than he actually is.  Because of this combination of factors he is rarely offered much compassion when he goes from zero to sixty a split second.  Jeremy and I get even less.  There is no getting used to the comments about our parenting that come from complete strangers.  We often get questions asking us what is wrong with our child.  As his mother the most painful remarks are hushed and murmured words in passing: brat, spoiled, undisciplined.

Fighting Dieter’s thrashing, I passed the scowling faces in the crowd and found the rest of the family at the next exhibit.  Once again we were surrounded by familiar faces, showing concern and love.  Instantly my son was taken from my weakening arms, while aunts and uncles aided in calming him down.  Their gentle love and support was like a warm embrace that made the tears fall even more steadily down my cheeks. My husband handed me our daughter who instantly put her pudgy arms around my neck and looked at me with concern in her eyes. I hugged her and smiled into her little neck as I breathed in the fresh smell of her baby shampoo. I smiled, basking in all the affection that she showed that her brother could not.  Even after the battle, I discovered I was glad we came to the zoo. While the day ended in tears, for just a moment Dieter’s world was at peace, and so was mine.

Hercules and his Pegasus
Halloween 2012

Magpie did much better with trick-or-treating this year than she did last year.  I’m sure it’s because she has been with us for longer than just a couple of days unlike last year when we were in the middle of training in Ohio with er.  This summer Deeds decided that he wanted to be Hercules and then proceeded to say what everyone else would also be from the movie.  Little sister was Meg, Magpie was Pegasus, mommy was a Muse and poor daddy got stuck as Hades.  By the end of the summer, thanks to ebay we had all the costumes set and it was really fun.  Granted no one really knew who we were but the kids didn’t mind explaining to them.

In Halloween’s past we have learned that Deeds loves the holiday but it can be incredibly overstimulating for him.  His favorite thing to do was to make sure people shut the door so he could then ring the door bell and even if it was obvious no one was home we couldn’t keep him from continuing to go up and ring the door bell of each and every house.  This year was a bit different.  We went with some of his cousins and soon our group got separated.  Deeds, Magpie and I headed off with the older cousins while daddy and Gwen hung back with the younger.

At first it was great, lots of fun and laughter as the boys ran from house to house but soon Deeds would lag behind and then start to melt-down when he realized the boys were already at the next house.  Even when they stopped to wait for him he was getting pretty upset.  Finally I figured out that it was because once at the door people were often letting the kids just pick out their own candy.  This became quite time consuming for Deeds because he would put a lot of thought into which piece he was going to pick and heaven forbid they then told him to take another.

At one point apparently Deeds wasn’t a fan of any of the candy in the bowl and I overheard him saying “Do you have any candies?  I just really don’t like any of these kinds in here.”  I quickly stepped in and tried to explain to him that it’s not polite to say and you should just take a piece anyway and say thank you.  We intentionally go trick-or-treating in grandma’s neighborhood where they all know Deeds and Magpie just in case situations like this arise.  Thankfully they were quite nice to my little dude and he was soon racing off to the next door.

As Deeds gets older we see some amazing progress in how he is doing but then there are times where the more autistic tenancies come to the surface.  Holidays have become a bit of a dance for us and while we never know exactly how something is going to go from year to year we are thankful for an amazing supportive family (including his fantastic cousins) that always rolls with the punches and helps us out.

All the boys were excited they were “Hero’s”

October 24, 2011

Friends, strangers, and family touched our lives and helped our little Deeds.  Each day he grows and with Magpie by his side he is more confident and we can’t even remember life without her.  We always say a prayers of thanks for all of your support both emotionally and financially as you helped this happen for Deeds.

Today we remember that first magical day we met Magpie.  We can’t believe it’s been a year and we hope there are many more to follow!

October 24, 2012

Rest assured Deeds and Magpie are doing fantastically and here are a bunch of photo’s for your viewing pleasure.  I will work on a much more detailed post next week when we mark the one year anniversary of getting Magpie (can you believe it’s been a year!).

All our love!

Once again this team has shown how much it loves the the community and it is having an autism night.  It’s
Leo the lion’s Paws for a Cause Autism night on September 22nd!  If you love soccer this is the game not to be missed because with every purchase of a $20 ticket using promo code SAHARA on their website, a $5 donation will be made to support the 2012 Autumn Carnival for Autism!

The carnival is something Deeds loved last year and is super excited for this year, especially now that he has Magpie.  He told me he is going to “show her around and if she is good let her eat a hot dog.”  I chuckled at that since he knows it’s the only treat she gets that she’ll do anything for.

We will be going as a family to the game.  It will be Deeds first time in a full crowded stadium but with Magpie there I know he’ll love it.  He has wanted to go to a game for a while now so I’m thrilled we are finally going to try it out with him.  He is really excited.

The link is to enter the promo code and get the tickets is http://www.realsaltlake.com/content/ticket-promotions.  Come cheer on the Real Salt Lake as they play Portland!

It’s become one of Magpie and Deeds favorite places in the world.  Magpie gets to really let loose and act like the crazy lab she is and Deeds gets to throw rocks in water and watch VHS video’s to his heart’s content.  I think we played Hercules at least 4 times a day while we were there.  He got so obsessed with it that guess who is going to be our favorite hero for Halloween.  We seriously lucked out and even found the costume on ebay already.  Here is the run down for everyone’s costumes according to JD:

• Deeds: Hercules
• Gwen: Meg
• Dad: Hades
• Mom: the “middle” Muse
• Magpie: Pegasus

We have everyone’s costumes ready now with the exception of daddy and magpie.  I just need to convince Deeds to let me make Magpie a black Pegasus and not the white one with blue hair like in the movie.

Back to the cabin…  We went on a lot of walks and little hikes with the kids.  Little sister was much more interested in the outings than Deeds was but it helped when we took a half an egg carton with us.  We put pieces of tape in the bottom of each spot and colored them each with a different color.  During the walks the kids would try to find stuff from nature to put in the spots with the corresponding color.

It was an amazing week and we made a lot of cherished family memories.  After a rough summer it was the perfect ending and way to kick off the fall.

Throwing rocks after swimming in the creek.

Magpie in the creek with an amazing view behind her.

Very wet Magpie watching Deeds play after she was done swimming.

Deeds balancing on his favorite log. We had at least one picture a day on the log, it was his favorite spot at the creek.

The doggies resting after a extra long walk.

The kids decided this fort about 10 minutes up a trail was the perfect spot for a snack and drink break.

Deeds jumping over a log on the trail.

Magpie waiting for Deeds and I while we headed out for one of our many outings.

Bundled up watching for moose during one of our night walks. Deeds is actually wearing his great great grandfather’s coat, it was pretty cute. We would take glow sticks with us, I think it was the kids favorite.

Yet another shot on our favorite log.

Deeds watching his “favorite cabin movie”. The kids would play titans and heros while together. To the best of what we could determine it was a bit like their version of cops and robbers.

Deeds and Magpie splashing around.

Deeds sitting in the creek and trying to convince little sister to try it too.

Drying off in the sun after all the splashing around in the cold water.

Deeds swinging, we found it on our first night walk and then went back every other night we were there.

Pushing dad and Gwen on the swing.

Deeds counting his 24 glow in the dark bracelets from our walk the night before.

Side note: I love that last picture for a few reasons, one is that you can clearly see the side of his face that was burned so badly on his third birthday.  It still amazes me that it healed so well and that the hair grew back in almost the entire area.  You really have to look close to see the scars on his forehead.  Such a miracle and blessing for our little guy.