Category Archives: Autism
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.
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.
Deeds has been going to his morning preforming arts kindergarten and the afternoon public school kindergarten for about two weeks now. The first week with just the afternoon was a bit rough at home so it was good to know we made the right choice to enroll him in the extra mornings too so that he was still on the full day schedule he has been used to for the past two years. It has been really fun to hear him talking about singing, tae kwon do, and even dancing. He is one of only two boys in the morning but it doesn’t seem to phase him in the least. The other afternoon he even told me that at dance he learned how to sashay. I asked him to show be and he threw his arms out to the side with wild abandon and took a large sweeping side step. I clapped and told him good job and the look of absolute pride on his face just melted my heart.
While numbers are a strong point with Deeds it’s been a bit of a battle to get him to learn to read and write. He can, he just doesn’t really want to take the time to do it. He aced his first spelling test, spelling the words “I”, “red”, and “am” correctly (ah, kindergarten spelling rocks) but like most other kids he likes to flip letters a lot but I’m sure he’ll get there. Two of the most common flipped letters for kids learning to write are J and D… so sometimes when he comes home the name on his paper can be all kinds of basackwards.
When picking him up this afternoon from the public school I asked his teacher about the IEP he is on since we’ve never gotten communication about if they started it or how it was going. She said they have been coming into the class but she was wondering how we would feel if we changed it to a consultation, only when he needs it basis. I asked if he was doing that well and she smiled at me and said he was one of the brightest in the class and was making friends like a champion! I told her that if she was seeing him focus and do that well that I was okay with only pulling him out as needed, when he was overstimulated or needing extra time. Honestly it took all the willpower I had not to burst into tears and hug her right then and there! She has NO IDEA how far he has come but her enthusiasm and encouragement was just the boost this mama needed.
Our little guy has not only tackled many of his challenges, but he has hit them so hard they shatter. He is a great example to us!
For those wondering about Magpie. I know I haven’t really mentioned her a lot on here lately. She is still doing great. A little bored again when he is gone all day and so getting into some mischief at home that we are having to watch for, but she is still a miracle worker and sometimes I just need to remember she is a dog, not a robot. I can’t leave that fresh loaf of bread on the counter to cool and leaver he downstairs for an hour and not expect her to devour the entire thing. It was never an issue before but now that she’s gotten away with it a couple times she is being a stinker about it and so the retraining begins.
Deeds has been seizure free for a while now so she hasn’t had to do alerting, and he also hasn’t wandered lately so that is awesome too. Maybe wandering looses its magic when you know a big black dog is going to track you down and slobber all over you when she finds you. 😉
We still use her for meltdowns at home and in public and anytime we are out and about he wants her right there next to him. We’ve started to bump into a lot more service dogs in public and at first that caught her off guard since I think she assumed she was the only one allowed, but now she listens when we tell her to just ignore them and keep working. She is just so playful and so when another dog is around it takes all the focus in her furry body to stay on task and not go bounding over barking to play! I needed her a bunch last week when Deeds decided to start chewing the skin off his thumb at church. I didn’t notice till he was almost bleeding and so I kept having her do behavior disruption with him and it really helped. Hopefully the chewing on his own hands doesn’t become an issue. He did it to the thumb he still sucks when he is upset, and he couldn’t suck it for a while without a lot of pain so I’m honestly hoping that discourages him from gnawing on any other appendages.
Our little family is doing great. We are in full blown school mode and getting ready for our little cabin weekend, halloween (our costumes are going to rock) and sister’s upcoming 4th birthday party. We’ll keep you posted!
This week marks a big milestone for our boy. He starts kindergarten and will be in a typical class. I can’t think about this upcoming week without getting incredibly teary eyed. I find it odd since he has already been in school, full-time, for two years, and for a year before that he was in intensive therapy as well. Three years he’s worked with therapists and teachers. Three years he has learned the basics from how to chew and swallow to sitting
still relatively still during classes.
At Giant Steps we saw just that. GIANT STEPS. The little boy who went through testing to get into that program two years ago is gone, and an amazing little guy with unlimited potential and confidence has shown up in his place. Amazing teachers, therapists and aids held his hand and taught him diligently for the past few years and so I can only imagine they are almost as proud as we are! At three years old I honestly never thought he would live away from home. Neurologists said because of his brain damage he would hit walls with his speech, maybe being stunted with his communication his entire life. Well he must have hit them so hard they shattered. They said he might never be able to do simple things like button his own buttons or tie his shoes. The buttons just started to happen this year and I foresee those shoelaces getting conquered very soon. He has taught me one very important lesson:
Never underestimate him, there are no limits to the ways he has, does and will shock and amaze those around him.
Days can still be hard, and I know we still have a lot of road ahead of us…. but I am so proud of all the work he has done already to get to where he is. He will be in class with other kids who may be attending school for the first time ever and even with the years of classes behind him, this is also a new thing for us. More students, fewer teachers and shorter days could present challenges for him, but he’s already shown us what he can do and I am excited for all the new learning opportunities he is going to have.
Some of you may have heard this but it’s a good example of one of his strengths.
At his Kindergarten assessment the other day the teacher asked him to count as high as he could go. Around 80 I told her, from across the room, that he would just keep going. She sweetly said she wanted him to go as high as he could and that one kid even went to 200 that day. I chuckled and said okay, turning back to the forms I was filling out.
Soon I heard this:
“150, 151, 152, 153….” Deeds counted, slowing down to a stop. He had his face up to the ceiling and was obviously concentrating very hard on something. The teacher interrupted his thoughts and said “That’s okay if you need to stop. Is that as high as you can go JD?”
“Well, if I keep going to 999 then it’s 1000 next, then it’s 1001, 1002…” he quickly replied before getting interrupted by the teacher. She was laughing as she said, “Okay, well thank you. That’s probably good enough JD.”
I wondered if I should have pointed out that he could get to 200 counting by 2’s. In the end I decided that maybe with Deeds it’s best she learn by him just doing things.
We sure love our little guy and can’t wait for him to embark on this new adventure. We’re rooting for him and know he can handle whatever life throws his way.
We headed up for our last trip to the family cabin before school starts. This time around it was a bit exciting since we did not have power for the bulk of the time we were there. The solar charger we brought for Deeds iPad didn’t work so we were a bit nervous about how our guy would do during the 4 days we couldn’t turn on any shows or charge any electronics. We tried to keep really busy with lots of hikes, crafts, nature walks, and playing outside. Deeds also got a big kick out of the fact that we had to cook all the food over a fire and he didn’t have to have a bath for three whole days.
While the change in routine and bedtime situation without night-lights caused some stress for us a bit, overall it was a fantastic experience. I’m so glad that almost 60 years ago my great grandparents built the cabin for their posterity to use. It’s loved by our family, siblings, and countless cousins. I think this is the first time the kids have been up there without having grandma or grandpa come up at one point too and they asked multiple times where they were. Next time we’ll have to make sure they come up with us again.
By last night he was begging to go home and honestly I was ready to get home to a hot shower as well. We stopped on the way out this morning and hiked up to a geocache. Deeds was super excited to hold the GPS on my phone and tell us what direction to go. We decided that next time we go up we’ll have to plan on doing a couple more caches.
We took HUNDREDS of photographs, but we decided you really didn’t need to see them all so here is a quick sampling.
A few years ago we installed some hanging rings, cocoon swing and a mini trampoline in our family room. We saw a dramatic improvement in the meltdowns when we gave Deeds a physical outlet to utilize at home. When we moved into our current home two years ago we decided to reclaim the family room and install the equipment in Deeds room. The trampoline still lived in our family room for quite some time but I’ve never messed with the rings or swing since we moved in.
Yesterday when the kids were playing on the rings I noticed that they really needed to be raised quite a bit. Thankfully they are adjustable, I’d just never thought to do it. Funny how much kids grow. 😉
Today I fixed them and they haven’t left Deeds room since. The laughter coming from their room made me go investigate and this is what I found. Love these two.
I love how during the video of Deeds he stops to talk to Gwen after she says that he is strong like Hercules and says, “Hercules is stronger, I can’t carry the things he can carry.”
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:
- 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.
- 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!
I have a little desk in the corner of our room where I do my homework. The old MacBook pro that bit the dust during a meltdown last year is propped up on it, perpetually open with a lovely crack going down the middle of the screen. Honestly it works perfectly and I have gotten to like my little corner of the bedroom. It helps me to
waste time on pinterest and Facebook focus for my online classes and still be home with the kids and not at the library. I have a final this week that I forgot about till last-minute (eek) so I’ve been slaving away for the past couple days.
Just a couple of minutes ago Deeds came bounding into my room with Magpie. At first they just jumped on the bed. Then Deeds got this sudden burst of energy and was dancing around like crazy. The entire time Magpie kept looking at him, then me with this “I don’t know that kid” look on her face. They shook hands for a minute then in a flash he was gone again, leaving Magpie laying on my bed alone. She snorted and then looked at me one last time and the expression on her doggie face cracked me up. I think she was miffed that he didn’t take her with him when he sprinted back out of the room. The entire exchange didn’t last more than 5 minutes.
Moments like this are why I love my little desk in the corner of the room.
A couple of nights ago we decided to make an impromptu trip back up into the Uintas, to the cabin while my parents were still there. Since Jeremy had to work I just headed up with the kids (and dogs) after Deeds was done with school. We enjoyed helping with the cabin, relaxing, movies, games, hikes and fun. The only incident we had is when sister accidentally threw a rock that hit Deeds in the eyebrow. He’s probably going to end up with a little bit of a black eye tomorrow but he was pretty good about the ordeal.
This evening when we got home we headed to go swimming with some cousins and as we were leaving Deeds started having the biggest meltdown of the year. He’s been doing so well lately it’s like his autism just wanted to remind me what happens if he is tired and overstimulated.
All in all it was a nice break if I just mentally block this evening from my memory. The easiest way to do that is to gaze upon the fun pictures from the past couple days.
Deeds has become quite the little math wiz. In the past few months he has shocked us with his random bursts of math knowledge. He loves doing addition right now and also counting up to 200 by 2’s. Jeremy has been teaching him to count by 15’s recently and he can get up to 75 right now. With all these fun advances he has really started to show interests in playing games. Uno, Candyland, Blokus… you name it. His latest game he is saving money for is the new Uno Robot game.
At school they do “social skills” and that often involves playing games and learning how to take turns and how to win and loose with grace. We organized the game closet the other day so the kids could get into it by themselves. I was a bit worried about the messes that it could cause but after a couple of days reinforcing that we put one game away before getting another out it’s been a huge success.
I woke up this morning to lots of giggling and laughter. This was the sight I saw.
These two have been playing all morning and it’s honestly been heaven. As they get older their bond as siblings has some shining moments that really warm my heart. Sometimes there are a lot of fights because Gwen doesn’t always understand why Deeds will ignore her or doesn’t want her close (hugs can cause big issues sometimes). Lately however the happy moments have been closer together. I think it helps that Gwen seems to grasp a lot of the concepts needed for the games, even at the young age of 3 years old. It makes her a perfect playing companion for her brother. What a blessing.