Category Archives: Periventricular leukomalacia (PVL)
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:
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.
This morning we had a reporter and cameraman spend some time with us for a story Fox 13 is running next Thursday at 9pm about Deeds and Magpie. Since we just got home our house was a disaster. I feel like we just had our 3rd child and I’m slow to adapt. Thank goodness Jeremy helped pick up last night before they came to film and then mom came before they got here to help. Deeds was an angel and LOVED the reporter.
We ran to the store with the camera to get Magpie in action for the story. She even did a small track in the store and found Deeds with no problem once she caught his scent. First time we’ve practiced in a store out here and it was on camera so I was a bit worried. I didn’t prepare to be interviewed (or I might have at least put on make-up) and thought they would just be filming Deeds and Magpie. Hopefully I answered all their questions without sounding too flustered.
After that Deeds had a doctor appointment and then his social therapy. Magpie did fantastic all day with the excitement and new environments and I am thrilled because I was a frazzled mama. I’m sorry I didn’t take any pictures today, every chance I’ve gotten homework has been happening so I didn’t think about taking any till I just sat down to blog. I’ll throw in an old pic of my little man just because I think most blog posts are more exciting with a picture. 🙂
My grandmother sent me a forward yesterday. I knew if she was actually passing it along that it would be worth reading. Five minutes later I was sobbing. Thank you grandma. I’m sure some of you have heard this story, but if your like me and haven’t, take a second to read it. It’s beautiful. I tried and tried but couldn’t track down the original author.
Having four visiting family members, the wife was very busy, so I offered to go to the store for her to get some needed items, which included light bulbs, paper towels, trash bags, detergent and Clorox. So off I went.
I scurried around the store, gathered up my goodies and headed for the checkout counter, only to be blocked in the narrow aisle by a young man who appeared to be about sixteen-years-old. I wasn’t in a hurry, so I patiently waited for the boy to realize that I was there. This was when he waved his hands excitedly in the air and declared in a loud voice, “Mommy, I’m over here.”
It was obvious now, he was mentally challenged and also startled as he turned and saw me standing so close to him, waiting to squeeze by. His eyes widened and surprise exploded on his face as I said, “Hey Buddy, what’s your name?”
“My name is Denny and I’m shopping with my mother,” he responded proudly.
“Wow,” I said, “that’s a cool name; I wish my name was Denny, but my name is Steve.”
“Steve, like Stevarino?” he asked.
“Yes,” I answered. “How old are you Denny?”
“How old am I now, Mommy?” he asked his mother as she slowly came over from the next aisle. “You’re fifteen-years-old Denny; now be a good boy and let the man pass by.”
I acknowledged her and continued to talk to Denny for several more minutes about summer, bicycles and school. I watched his brown eyes dance with excitement, because he was the center of someone’s attention. He then abruptly turned and headed toward the toy section.
Denny’s mom had a puzzled look on her face and thanked me for taking the time to talk with her son. She told me that most people wouldn’t even look at him, much less talk to him.
I told her that it was my pleasure and then I said something I have no idea where it came from, other than by the prompting of the Holy Spirit. I told her that there are plenty of red, yellow, and pink roses in God’s Garden; however, “Blue Roses” are very rare and should be appreciated for their beauty and distinctiveness. You see, Denny is a Blue Rose and if someone doesn’t stop and smell that rose with their heart and touch that rose with their kindness, then they’ve missed a blessing from God.
She was silent for a second, then with a tear in her eye she asked, “Who are you?”
Without thinking I said, “Oh, I’m probably just a dandelion, but I sure love living in God’s garden.”
She reached out, squeezed my hand and said, “God bless you!” and then I had tears in my eyes.
May I suggest, the next time you see a BLUE ROSE, don’t turn your head and walk off. Take the time to smile and say Hello. Why? Because, by the grace of GOD, this mother or father could be you. This could be your child, grandchild, niece or nephew. What a difference a moment can mean to that person or their family.
From an old dandelion!
Wednesday afternoon Mom and I took JD up to the Primary Children’s Medical Center (PCMC) building at the Riverton Hospital for Deeds MRI. He was such a good boy while they were prepping him. It was amazing the difference in a staff that is used to not only children, but children with special needs. He didn’t even have to be strapped down for the IV placement. They had me hold him but it was much smoother than at the ER on Sunday. The real trouble came with the sedation for the MRI. It took a while but after maxing him out on three different medications he finally went under. If he had woken up one more time there was nothing more they could give him and they would have had to cancel the MRI. The nurse told us afterwords that if he ever has to be put under again for anything to tell the doctors to check his records and ask for general anesthesia. Once the MRI was done he woke up fairly quickly and was ready to get out of there ASAP.
This morning we met with the Neurologist up at PCMC in Salt Lake. After two different doctors reviewed his charts, medical history and did a thorough exam on him we were told that the MRI came back abnormal. Deeds was diagnosed with Periventricular Leukomalacia (PVL) and Mild Cerebral Palsy (CP). Stunned silence was my first reply. I thought that they would just come back and say to watch him for more seizures. I never expected us to leave with two additional diagnoses for JD on top of his autism. My first question was if the new diagnoses would negate his autism diagnoses and was told in his case the answer was no. Next I asked about the CP, and if JD would end up in a wheel chair. I was assured that he should not digress any further with the CP, but that we might start to notice that he isn’t able to accomplish some things others can physically as he gets older. Like the autism, Cerebral Palsy covers a wide range and Deeds is at the mild end of the roller coaster.
I did a lot of looking online when I got home and feel much more comfortable (or at least not panicked) about the new developments in JD’s life. The CP diagnosis fits with a lot of the irregularities JD has had since birth. The rigid muscles, and stiffness. How he never really crawled but would arch his back and scoot around. The toe walking and running, and abnormal sensation. We thought he just wasn’t coordinated but it’s more than just that. Once again I have to remind myself that he is STILL JD. The diagnoses doesn’t change who he is. It means he might need help with somethings that others take for granted. We are still learning about it, so sorry if I can’t answer many questions.
This all leads us back to the seizures. The doctor had us keep JD’s EEG appointment in Riverton for this afternoon. She said she needed to know a bit more about the seizures, like if he was having absence seizures throughout the day. I called this evening but they were still waiting on the results so I will call again tomorrow if we don’t hear back. She did teach me how to handle a grand mal or tonic-colonic seizure and reassured me that they all look way worse than they are. Oddly enough we had a Golden Retriever growing up that had epilepsy, so I had an idea just how frightening they can be. She said that JD may still be acting “out of it” this week from the episodes he had Sunday but that it is hard to tell because he’s had to go through so much sedation for all the tests. If JD is having absence seizures then we will need to put him on some medication to try to control them. If he is not we have opted out of doing medication right now and we’ll see how he does until his next neurology appointment in a couple of months. Depending on what the EEG says tomorrow we may call the place that we are applying for the service dog from and mention that we might also need the dog to help alert JD of seizures. If JD is approved that is… still waiting.
I will keep everyone posted on the results of the EEG. JD is doing well through all this, and he is my brave little boy. I’m shocked he behaved as well as he did during everything.