Slugger's Story

I first heard about seizure alert dogs from my grandmother, who had seen a program on television about them. It turned out that they were really expensive and agencies only gave them to adults who had lots of seizures. My epilepsy was fairly controlled at the time. We never really talked about it again.

Fast forward-I went to college and this same grandmother mentioned that I should get a service dog to live with me. At this point, the internet was up and running so I did a search. There was not a lot of information out there. The more I thought about it though, why would I want a dog with me all of the time? I was having a hard enough time talking about my seizure disorder to potential friends and prospects. Taking a dog with me everywhere was like pasting a sign on my forehead that said, "She's different!" At this point in my life I was trying to prove my independence and fit in, not stand out.

Fast forward, again-I became a social worker and decided that I wanted to apply for a service dog that I could take to work with me, to help my patients. As a bonus it could live with me, and maybe alert to seizures. I sent in my application and was told the waiting list was 5-7 years.

Time moved on and things changed. I never reached the top of the waiting list since I was rarely having seizures and there were others that "had a greater need". I understood that, but wasn't that what a waiting list was all about? I resigned myself to the fact that I would probably never be able to get a dog to help people I worked with and to possibly help me.

Cole came along and I started thinking about service dogs before we even got his Dravet diagnosis. I called 6 different agencies, and not one of them would place a seizure alert dog with a child under 5 years old. I was so frustrated. I wasn't sure if Cole was going to make it to age 5 (sad, but true). I went to the Dravet conference and saw multiple service dogs there. One person that I made friends with had just finished fundraising for her son, who was the same age as Cole, through 4 Paws for Ability. I had seen their website during my search, but they were in Ohio. I lived in Utah. I had not really delved into their mission. She explained to me about the fundraising and that they could place a dog with my son. That was all I needed.

I came home from that conference with an overwhelmed feeling, having just caught a glimpse of my future. I did, however, have a fresh resolve to get the very best for my son. I single handedly organized a fundraiser and I was not going to look back. To learn more about that part of our story, go back to the fall of 2010 in our archives.

We raised our money, got approved and had to hurry up and wait. Turns out that we had to wait longer than anticipated, but Slugger was worth every tear shed and every day that I thought, "I could really use that dog right about now!"

We finally got to meet our furry family member in October 2011 at 4 Paws for Ability. There is a lot of emotion that I still feel, 9 months later when I think of that day and this video.

We gained many friends through our 4 Paws journey and had a wonderful, tiring time at training. If you want to read about our time at training, click here

Life with Slugger has not been easy. It is really like bringing another baby into the family-one that sheds! All of that training, all of those commands have now become second nature. There are still bumps in the road, but he truly is the perfect dog for Cole. He is so patient and has the perfect personality to fit in with us.

To those of you who are thinking about getting a service dog, I say-Do it. It will not be easy, but the rewards that you get are a totally worth it. Slugger has brought so much to our family.
So even though he does dumb things sometimes and there are days when I wish that I could shave him, he is my baby's best friend and guardian angel here on earth. I would not have it any other way.

Things People Say To Service Dog Handlers

Pardon the title of this video, obviously I did not create it and I don't swear.

I admit, this made me literally laugh out loud more than once!  I think we hear, "They must be training that dog," or "Why is he wearing a muzzle?" every time we go out in public.  We have had someone say almost every single thing in this video, and more, to us in the last six months.  ;)

I think my personal favorite Slugger story comes from when we were at Disney.  A young adult proclaimed, "Look at that dog!  That is the saddest thing I have ever seen.  That is just so awful!"  I wanted to turn to her and say, "This dog LOVES his job and um-did you notice he is at Disneyland?" amongst other things.  I also laugh when people run up and take pictures of Slugger like he is a celebrity, without asking or anything.  It is like the paparazzi when we are at a place when you would not normally see a dog.  I  just laugh and shake it off most of the time.  Sometimes we will actually tell people who are passing by and whispering (why do they all assume that we can't hear them?) that this is indeed a working, fully trained service dog and he is for my little boy.

It is important to educate others about service dogs and we do it on a daily basis.  This, is for fun.  I hope that my fellow service dog handlers get a giggle out of this.

Open Mouth, Insert Foot

And I was just saying how well we were doing....

Cole has had a couple of weird days. I mean, weird. It all started with an increase in myoclonics. OK, we know Dravet changes all of the time, we roll with it. Monday was still Spring Break, Tuesday was therapy, so Wednesday was his first day back in school in two weeks. I decided to do something good for myself. The last few weeks have kind of wore me out. Low and behold, Dravet wanted to remind me that I can not go anywhere within a two mile radius. It doesn't matter what I am doing-the beast is always there. By the time I got to the school, 35 minutes after the relatively short seizure, you would have NEVER known that something had been wrong with Cole. He was slurring his words a little with the Versed in his system, but he was sitting at the table doing a puzzle, talking up a storm. Plus, Slugger alerted 45 minutes before! This is his 4th consistent alert 45 minutes ahead, so we think that is his "window". Cole did not seem any worse for the wear, Slugger had done his job...it was all good. Well, good as it can be after a seizure. I packed up the boys and took them home. Cole continued to have lots of myoclonics, which is once again, weird. Usually after we give him Versed, he is good for a couple of hours at least. I go to the dentist (hooray! I might need another root canal). Cole continues to cluster, so they give him more meds. He wakes up twice in the middle of the night.

Thursday rolls around, Cole wakes early, that is fine. We have a wheelchair evaluation and I was going to get him up anyway. Wheelchair guy comes, gets the little man all measured. Cole is doing awesome, hardly any myo's and they are spread apart. So, I send him to school! As this is my first true day at home in weeks, I finish up a post for next week (you will find out how de ja vu it is later), do laundry, catch up with my DVR simultaneously and clean a little for a couple of hours. Then I get a call from the nurse. She lets me know what is happening and that Cole is fine. I jump in the car and head over-much quicker when I am 2 blocks away. Nurse tells me that Cole was having so many myoclonics that she gave him a small amount of diazepam in his g-tube. About 3 minutes later he started to have a full-blown tonic-clonic. She gives him Versed. It stops quick, she calls me.

By the time I got there, he was loopy, but talking. Nurse tells me that Slugger got off of his place twice, then had a light bulb moment that he was trying to alert. This is her first time alone with Slugger during a big seizure, so she is still getting used to alerting. She also said that Cole kept on trying to go over and lay with Slugger. This is good! I talk to her some more, give Slugger lots of treats for being a good boy. Check out Cole more thoroughly. I notice he is blind. Oh, great. Then as I pull him on to my lap, I notice his left leg is jerking. He is not done! He has a complex-partial seizure, I give him more Versed. The whole time his oxygen is going up and down. Leg stops. So I think we are out of the woods and try to settle him down (he hates Versed with a passion). Slugger alerts, again. Okay? Still blind. 5 minutes have gone by (almost an hour since the whole thing started). He goes stiff, then limp. I notice his eyes are not just deviated anymore they are actively twitching and moving back and forth rapidly. Geezo! So, we give him Diastat. At this point, he has had myoclonic, tonic-clonic, atypical absence, complex partial and tonic seizures...within an hour. Our personal protocol is to go to the ER after 4 doses of rescue meds. I get to the point where I feel he is stable and I situate him in the wheelchair to get him to the car. Slugger then alerts for a THIRD time, and he will not back down. He is putting his head under Cole's legs, nuzzling him like crazy, licking his hands because he can't reach his face, nuzzling my elbows and practically tries to jump into Cole's lap. Alright buddy, I get the picture. We are going to the hospital. Cole started to drool in the car and got goosebumps, so I knew that he was still seizing. We headed to the ER.

This is getting to be the world's longest post, so I will break it up!
Cole and Slugger in the ER trauma bay

Unpredictable

We all know by now that Dravet is unpredictable and always changing. Especially while kids are young. Take this week for example. Cole has been doing really well, only needing a small dose rescue meds a couple of times a week for the last couple of weeks. Wednesday he had a lot of small seizures and struggled near the end of school and into the evening. Schools have been closing for Norovirus out here and I decided to keep him home on Thursday just in case he was getting sick. Thursday rolls around and we are supposed to have beautiful weather. 70 degrees! I couldn't just stay in the house, and Cole was doing really well, so I pulled a spontaneous trip to the zoo for a couple of hours out of no where. I was supposed to be going over to a friends house for something, but we ended up convincing them to come with us! Who wouldn't like to skip school to go to the zoo? (Mind you, their mom is responsible and we waited until they finished school to go).We were only there for an hour, which some people would say is not worth it, but we had a good time. Cole did great and Slugger was as much of an attraction as the animals on display. Everywhere we went, we heard kids say, "Look! It's a dog!" Who cares if there are lions and tigers? There's a dog here! :)

The animals seemed to get a kick out of Slugger too. Especially these donkeys at the children's farm. They were not paying any attention to the masses of pre-school kids on field trips, but when we walked up all 4 of them ran up to the fence and were totally interested in Slugger!Can't you just hear them say, "Hey, man! How did you get on the other side?"We came home and Cole ended up having a really weird seizure where he curled up in a ball and was extremely sensitive to touch. Never seen that kind before. Regardless, I sent him to school on Friday since it was one of his friend's birthday and he had been doing fine all morning. I was in the bath when I saw the nurses name pop up on my phone (yes, people..I bathe with my phone. I need to hear it if Cole is having a problem in school). I knew it must be a seizure, so I jumped out, dripping hair and all and ran around getting dressed while she explained what was going on. It took me 6 minutes, a little longer than usual *wink* , from the time she called me to the time I got there. Yeah, I am sure that I was quite a sight! Mascara circles under my eyes, looking like a drowned rat. I never could pull off the wet look :) So thanks Dravet, for reminding me that I do not have the right to shower-even if I am alone in the house.

This particular seizure was, once again, different than what we have been seeing lately. He bit his tongue, which he has only done once before, so he was bleeding (me-I am not so lucky). He also just passed out and went into a full tonic-clonic, no small leader seizures. He used to do this all of the time, but it has been a while since he has just fallen on his head. He has a nice bump to match the permanent one on the other side. A constant reminder of the days when he used to have atonic drop seizures and would hit the same place over and over as he fell. Lots and lots of drool and for a while I thought I was going to have to take him to the ER for suctioning. Even after the seizure stopped, he was really junky and I could hear rattling in his lungs. I was pounding on his back and encouraging him to swallow, but he was unconscious. I was certain he was going to aspirate. Every time without fail, when we go to the hospital (no matter how long we are there) Cole picks up whatever is floating in the air. So you can understand why I was hesitant to pack up and possibly make things worse. After a 3 1/2 hour post ictal phase, he woke up and was able to clear the phlegm. Thank goodness!

So, same jacket, different day. Same little boy, different conditions. Through all of this though, Slugger remained a constant. He alerted 45 minutes before the seizure and then again 10 minutes before. The nurse didn't recognize the first alert, so I guess he really wanted her to get the message. We are so grateful for him. Thank you again to anyone that helped to make Slugger a reality. He has made things that are so out of control and unpredictable, a little easier.

How To Take Your Service Dog To Disney

Taking Slugger with us to Disney proved to be a challenge but a real blessing. We are so grateful that he came to us at this time to help us have a magical Christmas. Here are some tips if you are thinking about taking your service dog to Disney.*Here is a list of the rides that your service dog can go on, surprisingly they can ride almost all of the attractions. Also included on the list, are areas that are designated for potty breaks (they even have signs). However, you can use any grass area (all are fenced off), you just have to find the gate to open. I printed off this list and it helped me when I could not find the signs. There were a couple of times that we had to be creative, but most of the time we were able to find a place for Slugger.

On King Triton's Carousel

*The "cast members" will know how to accommodate your dog. They have to ride laying down at your feet for most rides. If you are planning on going on a ride that is on the list, which your dog can not go on, you will need to have someone with you that is able to hold your dog while you are on the ride. The Disney staff can not watch your dog for you. We did this on Soarin' Over California, which Cole really loved and went on 3 times.*Know that you are going to get a lot of attention directed towards you with your dog. Slugger is going to show up in a lot of peoples pictures. It was like the paparazzi when they recognized that he was actually riding the rides. People will ask to pet your dog, some won't even ask. It REALLY helped us to have this vest. We have "Seizure Alert Service Dog" and "Working Dog Do Not Pet" patches on both sides. Many parents would see them and tell their children that the dog was working so they could not touch it. Also, it saved a lot of questions of "Why do you have a dog in Disneyland?" This vest is lightweight and it was easy for Slugger to wear all day long. You are still going to have the random comments and the assumption that your child is blind. That happens in a regular public situation anyway. You can print out cards to hand out to people that have more detailed questions, explaining about service dogs and your child's condition. It helps to not get stuck in a 20 minute conversation when you are trying to focus on your child.

*For the record, Slugger's favorite ride was It's A Small World. He was really interested in all of the little people :) He struggled with what to do on the first few rides and I actually had to lift him in to the first one, but by the end he was working like a pro. He immediately knew what to do. Hop in, lay down, stay still. I was so proud of him-especially one night when it was shoulder to shoulder on Main street trying to get out of the park and I was certain that he was going to get trampled because he was so low to the ground and it was dark. He weaved in and out like a champ and I kept praising him the entire time! I am so glad that we practiced in crowded public places before we left.

*Disney has a kennel where you can leave your dog if you feel like they are slowing you down, or they are getting tired. You just need to bring their shot records. It costs to leave them there, but if you are going for more than a couple of days it might be nice to give them a break. I know that Slugger was exhausted by the end of the day. He had probably never walked that much in his life, even with all of our breaks.*You WILL find that parents will come up to you and want to know how they can get a service dog for their child. We gave out 4 Paws for Ability information 5 separate times to parents who had desperate looks in their eyes and a glimmer of hope that maybe someday their child could come to Disneyland with their dog. It was very satisfying to have those kinds of conversations and spread awareness. We never even dreamed it was possible for us before Slugger. We were grateful to be proving ourselves wrong. There were times when I could tell that Cole was getting overstimulated and he would just crawl under the table and lay on Slugger. It made me so grateful that we brought him with us the entire time.

*You will get random people who bring their kids up to play with your dog, or others who make snide remarks. Just remember that you are always an ambassador for other people who have service animals. I think that my favorite comment was, "I think that is the saddest thing I have ever seen! I feel so bad for that dog!" Uh, did you notice that he is at Disneyland? Plus, this dog LOVES his job. His life is not one of sadness! It made me chuckle. We actually saw another dog there who was barking and jumping up on their owner, while they were frantically trying to keep it quiet and tell it to get down. Slugger behaved like a professional the entire time.

*Make sure that you have bottled water, enough treats and everything else you need when your dog is in public. We also carried a serving of food in our backpack since we did not know when we were going to be leaving the park. We just fed him when we started eating and then he rested while we were having our meal.

We are really glad that Slugger was able to come with us and think that with his help, we might even try something like this again!

*I wrote about how to take your special needs child to Disney, here,

How To Take Your Special Needs Child to Disney

I participate in a tradition that is almost 30 years old. It involves members of my extended family meeting at the most magical place, every 4 years, at Christmas. It started when I was a wee babe and I did not make the first trip. However, I have only missed it once since then when I was 8 1/2 months pregnant. I look forward to this, just like all of my uncles, aunts, cousins, etc. However, for the last few years I was certain that we were going to miss this trip too. How was I going to take my special needs child to the nightmare of all overstimulation, across the country, outside, during the busiest time of the year? It just didn't seem possible.

It was about July that I started to consider taking Cole. I would not even think about getting airline tickets until October, wanting to even get refundable ones. Our life is so unpredictable, flying across the country was such a risk. Let alone going to an amusement park with a kid who is sensitive to light, noise and temperature. One who gets overstimulated very easily and has new triggers for seizures that just pop up out of the blue. Yet, we went and we survived! I'll even go so far to say that we had an amazing time. But it was not without a lot of work and preparation on my part. I'll share my secrets :)*If your child uses oxygen, be certain that you have an FAA approved oxygen concentrator for your flight. You can also work with your DME company to arrange for tanks once you arrive at your destination, since the concentrators are pricey.

*Have your doctor write a letter explaining the child's diagnosis and if they are on special medications, diet, etc. Always take your emergency protocol in case you have to go to a hospital where the staff is not familiar with your child. You CAN take medications and medical liquids through TSA and on the plane. You just have to have the prescription and a letter. Believe me, don't pack all of your meds in your bags. A good friend of ours had their luggage lost and then their child had to miss a dose while they were scrambling to try and get a new prescription. The only drawback is that it takes more time waiting in the screening line because they have to screen each bottle. Totally worth it though to know that you have all of the right medications. We even take Fruit2O with us, for Cole's diet. Make sure that you go to the airport at least 2 hours early (even with the medical liquids line)! You have to undress your service dog (varies by airport) and screen all of your meds, the stroller, etc. We filled up the entire conveyer belt :) Plus, rushing is never good for kids with special needs.

*Before you go, get refills on all of your medications. If your child has rescue meds, stock up. You can usually get a new prescription every 48 hours for rescue meds. It was a lot of back and forth to the pharmacy for a couple of months, but it was worth it. I think that we could have put out an entire football team at any one time with all of the medication we had on our person. It made me feel much better to know that we were prepared and would not have to wait for paramedics. Also have up to date paper prescriptions to take with you in case something gets lost and you need a refill. Doctors are not always available at night and on the weekends to call something in for you.

*Spend time on the Disney (or other park) website. They will have information there, you just have to look for it. Here is a page that has an overview and links to answer a lot of your questions.
-Use the website to help you map out what rides are in what section of the park.
- If your child is wheelchair bound, here is a list of attractions that they can stay in their chair for. Also ones that they would need to transfer for, but has adaptations. We used some of these "transfer access vehicles" and it made things go a lot smoother.

*Look up specific rides for toddlers or in your child's age group. I found this website to be helpful. There are others out there. If your child is in to trains, map out where all of the trains are. If they like rocket ships, know where the age appropriate rides are in Tomorrowland. If they love princesses, find out where they are most likely to be seen. I made a detailed list, breaking it up into "lands" and wrote down all of the rides that I thought Cole would enjoy in that section of the park. I prioritized them, thinking about which ones he would really enjoy, in case we did not get to spend much time there. I wanted him to have as much fun as possible, so I made sure that I had a "Top Ten" list ready in case we were not able to stay. With Cole, we had no idea if we were even going to make it for an hour. I wanted to be sure that we at least did something that he would want to do in that hour. (Lucky for us, he made it the entire two days, but my list sure helped me to know what he would like in each section). We only went on two "adult" rides that Cole could not go on the entire trip. Everything else was geared towards him. Make sure that you measure your child and know how tall they are. Cole was tall enough to ride almost everything, that didn't mean that I took him on roller coasters or rides with flashing lights though :)

*After you have made your list and you know which rides your child might like, go to YouTube. Or just google the ride name + video. There are so many people out there that have just videoed the entire ride and uploaded it. If your child is overstimulated easily, or has a hard time breaking out of routine, watch the videos of the rides over and over. I did this for two months. It actually gave me a better idea of what Cole would like. This way, it was not "brand new" and he was not so overstimulated. He already had some idea of what was going to happen and he could focus more.

*TALK about it. Over and over and over. If your child has special needs, they most likely do not appreciate surprises. The more you talk about it, the more they are comfortable with the idea.

*The first thing to do when you get to the park is to go to City Hall. It is just inside the gates, to the left. You will need to stand in line and get a disability access card. You can get up to 6 people in your group to be covered by the card. This allows you to get in through the disabled line, which most rides have. You can pick up a pamphlet at City Hall that tells you if there is a separate line for a ride. It will also tell you if you just need to enter through the standard queue. Another thing you can get on this pass is a "Stroller=Wheelchair" stamp. If your child is little, or has an adaptive stroller in place of a wheelchair, this stamp allows you to take the stroller all of the way up to the ride. Otherwise, you have to park it and carry your child to the ride. This stamp saved us from Cole having to walk. The more he walks, the more tired he gets, the more his seizure threshold comes down, etc. It also let us keep the oxygen in the stroller instead of having to lug it to every ride. You can use a doctors letter to get this pass and stamp, but once they saw our service dog, no one asked me for a letter. This pass saved us a lot of time waiting in line, which was really nice because Cole really struggles with patience and standing still. He got overstimulated just waiting in the shorter lines. I know that he would not have lasted as long if we had to wait in the standard queue the entire time.

*Use the Baby Care Center. They are located here in Disneyland. They have them at Disneyworld too. It is a quiet place that you can change your child, or it even has a very small toilet for those that are potty training. It has an area where you can feed your child, away from the crowds. Great hidden gem! Cole is almost 4 and it was perfect for him to take a little break from the commotion here.

*When you are at the park, take the time to rest and take breaks in between things. This is an opportunity to sample the incredible food offered there, or just let your child wind down. Cole really liked the arcade in Tomorrowland (although I was certain it was going to cause a seizure) and would just sit and "play" the games even though we didn't pay for any of them :) The Disneyland Railroad, the Monorail or the Main Street vehicles are good ways to just take a break from walking. *Make reservations for meals. I made one for every meal. You can call and cancel with a courtesy call. Out of our 6 reservations, we only went to 2, but I knew that there was a table waiting for us and I had looked at the menus on the Disney website to see what Cole could eat there. He does not do well with "fast food" or preservatives and can not have sugar or gluten. Look at the menus and see where they offer foods to fit your child's diet. I know that there are even ketogenic families that have found options at Disney! We got fresh fruit and organic apple chips for snacks. Get reserved dining for World of Color if you are going to California Adventure. The show is a half hour long, and most people have to stand. If you get into the reserved section, they have a bench for people with disabilities. I know that Cole would not have been able to stand in a crowd for a half hour. You can also get into this section by getting fast passes. You will need to go super early though as those two benches seem to fill fast. The dining options secure you a spot on the bench.

*Really consider dining with characters. We didn't buy a single souvenir the entire trip, but a Mickey Mouse balloon. We decided that we wanted to do something that Cole might actually remember, especially since we did not know how long he would last at the park. Call Disney Dining and make reservations. Once again, the standing in line thing. You still have to wait a little, but nothing compared to others who don't have a reservation. I am so glad that we spent the extra to go to Goofy's Kitchen. When you ask Cole about the trip, THIS is what he remembers. He got one on one time with characters (which I wasn't even sure he would like) and Minnie brought him a sugar free cupcake with a candle while the staff sang Happy Birthday. He tells everyone about the candle :) I had so many "pinch me" moments, but that was a huge one that brought tears to my eyes.*Take lots of pictures. We took over 400. I just kept on handing the camera to different people in our group, wanting to get others perspectives on it. We just never know if this is going to be the only time that this can happen for Cole. It did give us confidence though that we could possibly do something like this again. If you are going on a Make A Wish Trip, the people at Give Kids The World Village will help you have an incredible time. But, if you are trying to tackle the park on your own, these are a few things that helped me. Preparation and seeing that magic smile on my little boys face.Disclaimer: This was only based on our one time experience. We didn't even know if Cole was going to be able to enjoy "the Magic". It turned out great though! Now, I have to be honest and say that I was holding my breath, waiting for the other shoe to drop the entire time we were there. I lost more than a little bit of sleep worrying about this trip. I was more than prepared to high-tail it back to the hotel or to call 911. Going anywhere with a medically fragile child is a challenge. Our lives are not simple anymore. Taking even a "normal" child on an adventure like this can be frustrating and a challenge. My advice to you-Just do your leg work and then prepare to be flexible; but enjoy every moment. Make it about your child. What do they want? What would they like? Doing this made our trip even that more magical because it was all about Cole.

*I wrote about how to take your service dog to Disney, here.

Getting Settled