Category Archives: In Public

Leaps and Bounds

As I sat last month and watched JD perform with his kindergarten class I couldn’t help but think once again about how much he has progressed.  I filmed his little show, zoomed in on his fidgeting and spinning, thinking it would be so fun to show all of you how well he is doing.  When I came home to put it online I somehow accidentally deleted all the video and was so darn upset about it I didn’t post anything at all.

With my nursing program starting at the university it hasn’t left much time for blogging.  I really do like to spend all my extra time with the kids.  Lets face it, if I don’t even do the laundry or clean house when I’m in school then things like blogging are really not going to get done.  I decided however that since we are halfway through the school year and our little guy turns 6 next week it is time to dust off the old blog page and post a quick update.  I can’t believe it’s almost been 3 years since that horrible burn but oh baby how we’ve grown since then.

Here’s the skinny on Deeds and Magpie:

Deeds is now as tall as some of his cousins were when they were almost 8 years old.  The sweet boy is really a gentle giant just like his daddy and I’m sure will one day tower over his mommy (and it’s not like I’m a small fry).  He has been liking LOVING kindergarten and academically he’s doing amazing.  A far cry from being told he probably wouldn’t be able to speak, now we can’t get him to stop and we love it.  He is an amazing big brother and while he still has some very autistic moments that little sister doesn’t understand they get along quite well and love to play games together.

Our latest bit of fun combines my love of Disney and his love of video games.  They got the Disney Infinity play set recently and Deeds loves to ask me to play with him.  It’s so fun to connect with him on a new and unexpected level.  It is really something I look forward too.  Even on days like today when I could only play for 10 minutes with him.

Magpie is still feisty as ever and such a good girl.   Since Deeds has been seizure free for a couple of months I think she was getting bored.  That is until I did respite for a family who had a special needs son and we had him at our house for a few days over the holiday break.  Magpie LOVED IT!  She followed his wheelchair around, responded to his seizures and was on her best service dog behavior the entire time.  It was fun to see her snap back into things.  She is quite the fixture at church and everyone is so used to her now she gets told hello as much as the rest of us do.  Lately we have seen quite a few dogs in public places that aren’t service dogs and it has caught her off guard when another dog barks in a store or something but she’s such a pro at this point it’s usually no biggie.  Sure she still has her teenager days, but most of the time she is her spunky self.

I hope it isn’t as long between updates next time, but with the fun of Nursing school I’ve learned that my life isn’t always my own right now.  Hope you enjoy the pic’s and know we still love and think of all of you often!  You helped our guy and changed his life, it’s something that won’t ever be forgotten by us.

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Service Dog article in the UVU Review

Walking into class at the University this morning I noticed the cover story for the school paper had an article about animals on campus so of course I snatched it up and read it.  I started to write a letter in response just pointing out a couple of things other than just the moral issues with passing your pet off as a service dog.  My quick letter got pretty long so I decided to just do a blog post too.  Lucky you guys, two posts in two days, and during a semester to boot!  Enjoy.

UVU Review article

As the mother of a little boy with a service dog I wanted to say that I appreciate your article and the obvious research you did on the subject.  My son has quite a few “invisible” disabilities including epilepsy and autism, if you were to spot him across the hall he would look like any other child but he has some major struggles.  His service dog Magpie has quite literally been a life saver for him and she is his constant companion, including when he is with mommy on campus or in the family study room of the library.  She has many tasks she can perform for him and having her has changed our life.

Deeds and little sister with Magpie

Deeds and little sister with Magpie

I do want to point out another danger of those who abuse the system and not focus on the moral standards.  Not only is it jeopardizing the rights of those with legitimate service dogs as well as future interactions they might have, but it can also be a safety hazard.  Dogs that have not been properly trained as service animals, even the best behaved pet, can put service dogs and their owners at serious risk.

If you have your pet on campus and they never cause a problem because they never see another dog you just can’t predict how they might react when someone with a service dog walks by.  Even a working dog, like my son’s that has been certified and working for two years sometimes gets excited when another dog is around in public.  They are dogs after all, and not robots.   These situations are rare, and usually so small others might not notice at all.  Once in the two years we’ve had her she was startled by a dog in a building that lunged at her and she barked.  When she starts to lose focus we have a simple command we use that she always immediately responds to and focuses back on her job.  Now imagine a dog that isn’t trained becomes startled or caught off guard in a building (school or otherwise).  The owner might not be keeping an eye out for situations like that and all it takes is one slip of the leash and barking lunge to trigger a huge problem.

Service dogs being attacked, or even threatened by other dogs can not only cause physical harm to the dog, or the handler, but can also cause emotional trauma that requires the dog to be retired prematurely.  A dog that becomes scared in public, anxious or aggressive cannot focus on the fulfillment of the medical needs it is trained for.  There is also a great financial repercussion to having to retire a service dog.  My son’s service dog cost $22,000 to train, and we personally helped raise over $13,300 of that for the non-profit we got her from.  In addition to the cost of the dog there was the cost associated with the two weeks in Ohio we spent being trained on handling her.  Other issues also include the time that the person with the disability will now be without a service dog, which is a piece of medical equipment for them.  For the pet owner the disruption to their lives might be minimal, for someone like my son the disruption would be tremendous.

Deeds and Magpie in the Library at UVU where they spent a lot of time during the spring.

Deeds and Magpie in the Library at UVU where they spent a lot of time during the spring.

It is not just the service dogs that are trained when they enter a person’s life, the handler is also trained.  A doctor wouldn’t hand you an oxygen tank and say “good luck” and it’s the same with a service animal.  A fantastic list of Service Dog Handler Etiquette is listed at http://people.umass.edu/ebarney/responsibilities.htm

The last thing I want to point out is how to act or what to do if you encounter a service dog in public, here are some great tips to remember as a rule of thumb:

  • Speak to the handler first before talking or interacting with the dog.
  • Do not aim distracting or rude noises at the dog, this has happened to us quite a bit and it not only upsets our son but it can really make Magpie lose focus.
  • DO NOT TOUCH the service dog without asking first, and if you aren’t granted permission then please do not pet them anyway.  Some dogs get distracted easier than others so their handlers might not ever allow touching.  I’ve also heard it put this way: You wouldn’t go up and start playing with someone’s wheel chair so don’t touch my service dog.  In our case it helps our son socialize with others, especially kids his own age.  If someone asks to pet Magpie we have them ask him directly and if he says it is okay then go for it!  If I’m trying to get through a grocery store on the other hand and maybe have kids with me and I’m rushing, OR Magpie might be having a rough day, don’t be offended if the answer is no.
  • Do not EVER offer food to the service dog, even dog food.
  • Do not ask personal questions about the handler’s disability.  Think your questions through before you ask them.  We commonly hear “What is wrong with your son?”  My husband and I don’t think there is anything WRONG with our son.   Sometimes we will still educate and share his story but it can be personal so think about what you are asking.
  • Don’t be offended if the handler does not wish to chat about the service dog.  Everyone has bad days, or can be in a rush.  Please be courteous.
  • Some service dogs wear a “Gentle Leader” that slips around their neck and then over their nose.  No it is not a muzzle, and no it does not mean the dog is not well-trained.  With Magpie we use it in areas where we know her focus might be distracted easily (on campus, Disneyland, etc) and it is just a reminder for her to pay attention and she can feel subtle tugs on the leash much easier.
  •  If a service dog happens to slip out of working mode and barks, growls or has a quick disturbance please remember that you should find out what happened before taking action.  Our son’s dog is black and there have been times she gets stepped on when people don’t notice her.  While she doesn’t bark when it happens I wouldn’t blame her if she did.  The dog could also be asleep and dreaming, or maybe someone provoked it.  Get facts first.
Studying with Mommy on campus

Studying with Mommy on UVU campus

If anything ever happened to Magpie it would break Deeds heart.  It has taken us two years to build a strong bond between.  It has not always been easy, especially for poor little sister who just wants to play with Magpie all the time but has had to learn the difference between a pet dog (which we do have at home as well) and her brothers working dog.  Please keep service dog teams safe and leave you pets at home.   Having Magpie in public with the children can be quite a daunting task, especially if I am the only adult there.  It takes a lot of focus from me as a mother, including extra preparations anytime we have to go anywhere.  Please help me out by not having your pet imitate a service dog.  If your dog misbehaves when you go out the next time we try to go somewhere as a family we may approach difficulties we weren’t expecting.

Rodeo? Rode-no.

We’ve attempted the local rodeo in the past with Deeds and it hasn’t ever gone well.  We thought maybe this year we’d take Magpie and try once again.  I love the rodeo that is put on for the annual Strawberry Days Festival and really wanted to be able to enjoy it again.  We told Deeds there would be fireworks after and he said he would go.

He lasted until the cow wrangling and he was DONE.  I knew when he was bouncing and rocking when they started with the Bronco’s at the very beginning that we’d be lucky to make it till the end.  He turned to Jeremy and I at one point and said he wants to do the rodeo backwards.  When we asked what that meant he explained (like we were idiots) that it meant the fireworks first, and then the rodeo.  He tried really hard but I started to see the little signs that we get prior to a big meltdown so we made a break for it.  Too many people, too much cheering, just too much for Deeds.  We’re contemplating trying again next year in the handicap seating with headphones with him but I’m guessing it’s not going to happen. I’m thinking maybe on rodeo nights Daddy (who isn’t a big fan, even if he is from Texas) and Deeds stay home while the ladies go with the rest of the family to the rodeo.

Once we got out of the crowd  we decided to do some sparklers at home since he was really disappointed about missing the fireworks.  Honestly with school in the morning, the fireworks might have been too late for him anyway.  I guess at least we didn’t have to fight traffic on the way out.  😛

The two things I learned tonight with Magpie at the rodeo are:

  1. Those stadium seats are not service dog friendly.  She slid from one row to another at one point and I was glad we were sitting pretty close to the front so we could get out easier.  We should have sat in the Handicap seating with her but it was limited and I didn’t want to take up space that might be needed for a wheelchair.
  2. She is not a fan of the Mutton Bustin.  In reality it may be the sheep she wasn’t a fan of.  We walked right past all the horses and cows and there wasn’t  a problem at all.  When those little ones came out riding the sheep she was not a happy camper.  Live and learn.  Maybe she was worried about the kids, I’m not sure.

We did the sparklers and then within minutes of going to bed both kids were out.  I’m glad that through the roller coaster of Autism with Deeds we’ve learned a few warning signs to watch for issues.  Its kind of nice to know that we probably avoided very big and very public issues by just leaving, even if mommy did miss the bull riding.  I got my strawberries and that is what really matters!

Strawberrry Days

Disney on Ice

How can you tell mommy is in the middle of a crazy semester of school…. she never blogs for Deeds and Magpie.  I can’t believe the last post was from Christmas, but hey, it’s spring break for me now which means catching up on everything from doctors appointments, oil changes, yard work and even blogging!

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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.

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

Hear no evil, speak no evil?

Hear no evil, speak no evil?

Waiting to get into the arena.

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.

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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.

 

Primitive

As I was working on a final portfolio for a class someone suggested that I share this story on Deeds blog.  After some thought I decided to post it.  It’s amazing to us how far Deeds has come since the time of this story.  Some things have changed for the better, others for the worse but he is still our amazing little man.  More than anything I have changed.  I have grown and learned to see the world through a new set of eyes:  Deeds.

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.

Deeds at Zoo

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.

Old Family PIcture

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.

 

 

Quick post with pictures

I know there are many of you wondering where we went, how the autism carnival and soccer game were and what we are up to now.  We are still here but our lives are as busy as ever.  Between mommy’s incredibly demanding course load at the university this year and daddy working a multitude of part-time jobs we haven’t had a lot of free time and when we have we are often spending it together as a family and not blogging.  Lucky for you I got stuck home for a couple days with a stomach bug so TADA, a quick post!

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!

 

A REAL Night for Autism

Remember back when we were blessed by the amazing fans from the Real Salt Lake soccer team when we were fundraising for the service dog?  You don’t?  Well go back and check it out here.

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!

Cotton Candy Dreams

A neighboring city was having its annual “Foam Day” today so we all headed to the park to check it out.  They use the fire trucks and shoot foam into a field and everyone can play in.  I wasn’t sure how Deeds and Magpie would do with foam covering them from head to tail (literally) so we enjoyed a couple hours of pre-foam activities and then left before the actual foam started to fly.

Gwen tells me “Mommy I love bruders Pie Pie.” and then leans in and gives her a kiss.

Little sister wasn’t a big fan of all the bouncing and sliding action so she hung out with Magpie and mommy in the shade a lot.  Deeds thought it was the best thing ever and would just fly down all the wet slides.  Since Jeremy is still out of work we have really been looking for free activities this summer for the kids to keep them entertained and it’s amazing how much you can find to do.  Maybe next year we’ll have to stay for the foam part too.

We took Magpie’s vest off at one point when it started to heat up and then the wet kids laid against her while munching on cotton candy and drinking water.  It cooled her down and it was just too cute not to share.

Our handsome boy with his “best service dog friend” Magpie.

This afternoon Deeds and I went to a book signing and then I promised him he could look at the Disney Store before we went home.  I was so pleased with how well he did at the book store.  When we got over to the Disney store Magpie was very tired so she sprawled out on the cool tile and the next thing I know Deeds is sprawled out next to her.  The two little turkeys were almost blocking the entire entrance to the store so I made sure no one was coming, snapped a couple pics and then we headed home.  We got some strange looks but we are getting used to that now.

Cuddle time in the middle of the mall.

A sure sign that it’s time to go home.

 

 

 

Splash Pad

Yesterday it was so hot we decided to take the kids to a local splash pad where they could play in the water and cool off.

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Deeds loves laying on the hot sidewalk when he is wet.

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Magpie wasn’t so keen about having to stay out of the water while her boy ran around paying.  We couldn’t stay too long since we didn’t want Magpie to get too hot.  Even with bottled water for her and an umbrella for shade it was a scorcher yesterday.

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Jell-o Fight

Daddy and the kids running down the hill to the Jell-o Fight.

Yesterday we heard about a Jell-o fight at the Thanksgiving Point Gardens.  We decided to give it a try for fun since it was cousin Hannah’s last day in Utah.  I wasn’t so sure how exciting being covered in sticky gelatin on a day that was over 100 degrees would be so I bravely volunteered to sit with Magpie in the shade.

Little sister thought throwing the Jell-o was fun and came back sticky and red.  At first Deeds was quite excited, then he got dirty and sticky and he was done!  He sat with Magpie and mommy in the shade until they finally turned on the sprinklers.

Magpie loves how sweet Gwen smells covered in Jell-o

Once those sprinklers were on the roles were reversed and Gwen sat with mommy and Magpie while Deeds went nuts playing in the water.  He was soaking wet by the time we were all done but happy as a clam.

Love how happy he looks in this one!

Very wet but no longer sticky Deeds.

We are happy to know now that the gardens have a different activity for family night every Monday through the summer.  In a couple of weeks they even have one for Angry Birds that we will be anxiously waiting for.

Drying off in the sun after all the fun.