Category Archives: Epilepsy
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.
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.
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.
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.
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.
I have so many pictures to share with everyone. We’ve been trying to pack in end of summer fun and all our “to-do” list before school starts for Deeds and mommy. I’ll start with pictures from going bowling with the kids today. Just check out the captions to get all the fun info.
Here are some random pic’s from the last week:
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.
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.
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.
Can you even imagine being told that your 9-year-old child needs an operation to literally cut apart the two halves of his brain. The surgery will help to stop debilitating seizure activity but that a lot of the outcome from the procedure is unknown such as how his language, mobility and even personality will be effected.
I have a dear friend who helped us with getting Magpie going through this right now.
Gina, over at Special Happens is giving her son Jackson his best chance in life and I want to do everything I can to help her help him. She is an amazing woman, full of support and love for those around her and I feel blessed to be able to return that love and hope some of you can help me.
Over the course of the next months the family will need a lot of assistance with travel and medical expenses so if you can donate please head over to do so HERE. I know times are tough, but we know first hand know how much even the donations of a simple dollar can help add up and bring tremendous encouragement in times of darkness!
For those of you unable to donate there is an awesome project going on to flood Jackson with cards from around the world. Grab your kids and have a fun evening with crayons and stickers making homemade banners and cards (Jackson loves trains, rainbows and balloons). Have no kids? No problem, who doesn’t love a postcard! Got a pet or an awesome service dog like Magpie, take a cute pic and send that to him. Lets let little Jackson (and his family) know that each card represents a prayer or thoughts of love for them during this time in their lives.
Special Happens / St. Aubin Family
Thanks for the patience. We would crash in bed every night after we were done in the parks and I had a hard time staying awake to blog. Dad flew home a day early to get back to work. When we were three hours from home I got a call from Jeremy letting me know he’d been fired when he went into work that day. On top of the shock of him loosing his job I got a stomach bug. SO long story short over the next couple days we’ll catch with a new blog post each day about our trip.
I can’t start this blog without a HUGE thank you to our Fairy Godmother and Uncle Bryan. This magical trip wouldn’t have happened without them. Uncle Bryan works for Disney and not only helped us get into the parks but also stayed with us the entire time helping with kids and even Magpie. He’s a pro dog handler now and we wouldn’t have so many pictures without his holding onto the camera and photo pass card for the entire trip!
When we all hopped on the tram Deeds wasn’t so sure about it but quickly warmed up to the first “ride” we were on at Disneyland.
When we got into the park the first person we saw was Mary Poppins. Deeds followed her around for about 5 minutes before he finally got her his autograph book. She never did stop walking so I didn’t get a picture but he was hooked after that first signature. Next we saw Goofy. Magpie was instantly intrigued by the big stuffed dog and little sister freaked out when Goofy bent over to give her a kiss. She was much more cautious after that kiss. We learned that if a line is to meet a character Deeds will wait like a champion! We could have done nothing but meet characters the entire time and I think Deeds would have still had a blast.
We headed straight back to Fantasyland and then Toon Town to try and avoid the long lines and crowds later. We hit Dumbo first. Magpie wasn’t so sure about it once we got up in the air but was a champ. There were just a couple of rides she wasn’t a real fan of but was always a champ anyway. Gwen had a hard time after the first few rides that she couldn’t immediately ride again or had to get off. I spent so much time prepping Deeds for the trip I might have overlooked explaining lines to the two year old. We also got the kids some ears. It was adorable to see them running around with them on.
Sister was SO excited to meet Minnie Mouse and she was adorable showing her dress to Minnie and Mickey. Thank goodness for Grandma taking the time to make the dress while mommy was studying for finals. I’m sure she would have worn it everyday if we had let her.
We headed over to the California Adventure after some lunch because Deeds wanted to see the Aladdin show and it was only showing our first day. Sadly he didn’t make it very far into the show before Jeremy had to take him and Magpie out. We stayed in the park after that and Deeds went on the Tower of Terror for the first time. He looked a little shocked when he got off but went again on the second day with mom. He tells us now he won’t go again till he is 5 years old because he’ll be older then. He is too cute. The kids discovered the Little Mermaid ride that evening and we spent the next two days going on it around 20 times. We let them play in the water too and I was glad I had thought to bring a change of clothes. Our stroller looked like a clothes line after that.
While we were sitting eating some sourdough bread Deeds started to have a meltdown. I was worried as we started to get looks from others sitting around. At one point a woman who had been sitting across from us started to walk over to me and I took a deep breath waiting for the backlash about my parenting. Instead of saying a word she smiled at me, picked up Deeds wet shorts that had fallen and I didn’t notice and put them back on the stroller. She told me to hang in there and have a nice day. I won’t lie. I shed tears that night at that wonderful woman. I was stressed and expected the worst and she helped me so much with that simple smile. I hope I always remember to look for ways to help others and not judge them.
It is very late and I am one worn out mommy but while it’s quiet I wanted to share a few pictures of our first day. I’ll blog more about everything later when I have time to do it justice but I really had to share these tidbits, especially for a very special someone who made this all possible.
It was a magical day for us today. Deeds just thrives here and I think he would wait for hours to meet a character (I didn’t expect that). When we got ushered into a room to meet Mickey Mouse he screamed “ITS MICKEY” and my mommy heart melted. We were the last ones in the room so Mickey actually got on the floor with Magpie and my little boy and made his day. I didn’t cry at the time since I was too busy smiling but I am now as I think of what a wonderful memory it created for my kids.
Little sister loved Minnie Mouse and it was actually one of the few characters she clung to. Both kids loved the Little Mermaid ride so much we went through the line and rode it four times and then we could only get them off if we promised to ride it again tomorrow.
I can’t wait for the next two days. I’m worn out but my heart is overflowing.
Did you know that March 26th (this coming Monday) is Purple Day. What is purple day you ask? It’s an international day of awareness for epilepsy. Our entire family will be donning purple in support of not only our little Deeds but all the other amazing people we know struggling with all different kinds of epilepsy. The first time Deeds had a seizure I remember like it was yesterday. It was a Sunday and he was even all dressed for church.
To learn more about this day and how it was all started by one sweet girl who has Epilepsy just click on the picture of the logo and it will take you to the official site.
We will be spending the day together as a family, and our first stop of the day will actually be to a neurology appointment we have scheduled for a check up on Deeds, his seizures and meds. I think we may need to find Magpie a purple collar for the day (or maybe a new permanent one)
When choosing what to wear Monday morning wear your purple and support awareness for epilepsy.
Last year we really wanted to make it to the special needs night at the Capital Theater but we couldn’t because it was right after Deeds burn. This time we were ready to go and counted down the days!
We met daddy up in Salt Lake, all of us dressed up. Even Magpie got a good brushing before we headed out. When we arrived we were early so we had our pick of seats but with Magpie and us being unsure how Deeds would react to the music we sat in the back. Ended up being a good choice since anytime there was clapping Deeds would complain about the sound.
To be honest it wasn’t exactly Deeds cup of tea. I think he enjoyed the music as background noise but within minutes we had the iPad out to keep him calm. Little sister on the other hand was in HEAVEN. Who would think a 2 year old would love the symphony and opera so much. She loved conducting the music and all the singing. Magpie was fantastic and even got recognized from TV by a couple of employees that asked how she was doing. We spoke to a few other families about her and she got a lot of love from the kids that were there. By the time we got back out to the car she was worn out and thrilled to just lay down and relax. She and Deeds both snored all the way home.
The best part of the evening was one of the last numbers. I’ve heard the William Tell overture many times. I think I’ve even preformed it before in some band. In case you need a refresher here it is:
A little while into the song in the center of the Theater a young man stood up and started conducting the song, waving his arms haphazardly through the air. His enthusiasm was contagious and soon the room was filled with flapping hands and dancing with yells of joy following. All these amazing spirits that had done so well during the performances were able to really act out how the music was touching them. As I looked around at them all I couldn’t help but let the tears just slide down my face. Even Deeds was laughing at this point. The conductor turned around at one point smiling and it was such a wonderful moment. No dirty looks or scolding from those behind the revelers, just smiling and happiness. It was truly heaven on earth.
The evening ended in pure joy.
A HUGE thank you to the Utah Symphony and Utah Opera. We will be back next year!
I have always loved the color purple, but now it means even more to me because I love a child with epilepsy. November is epilepsy awareness month and the color for the ribbon is purple. I decided to dedicate today’s short post with just a few epilepsy facts for everyone:
- What causes Deeds epilepsy? For our little guy the doctors believe it is caused by the PVL brain damage he has, but for more than half of the people living with epilepsy they don’t know the cause.
- What is a seizure? A seizure is a burst of electrical activity in the brain that can trigger anything from a sensation of a twitching finger to a full Tonic-clonic seizure where a person will drop to the floor and convulse. Deeds has a couple of types of seizures. Seizures can last from a few seconds to multiple minutes.
- Epilepsy affects more than 300,000 children in the United States under the age of 15 years old.
Many children do outgrow forms of childhood epilepsy but since Deeds is associated with his PVL we aren’t sure yet if he will. Our goal is to try to make it 2 years with no seizures. So far they are actually increasing so we are trying to adjust medications to find the right balance. Our neurologist is fantastic and believes in starting the medication low and slowly increasing if possible to avoid over dosing him and having his brain function be impaired and learning affected.
Jeremy was walking out to the car with the kids tonight when Deeds took a tumble and fell face first on the driveway. When he got inside to me he was covered in blood and after cleaning off most of his face I realized the front four teeth were shoved up into his gums so it looked like he was teething. He was screaming and bleeding so badly we took him right into the ER. Now I know that the ER really can’t do anything about teeth. They told us to follow-up with a pediatric dentist tomorrow to make sure he didn’t damage the adult teeth since the baby ones went so far up. They also told us that they would probably just “drop back down.”
Magpie was FANTASTIC at the ER. Deeds was so calm and she just laid down on the bed with him and he calmed right down. Made this mommy a happy camper that she was able to make him comfortable.
We missed the first part of the news story on TV but we had set it to record so we caught it after all the commotion and then watched the second segment. We can’t embed the video’s on this blog but here are the links for those of you that might have missed it, or the many of you that are out-of-state.
Thank you all again. I’m so glad you get to see Magpie in action. So many of you have been with us since day one a year ago and helped us every step of the way. We feel like you are all family and we are eternally grateful for your love.