Raising Chickens and Special Needs Kids

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Blooie, I LOVE the way you think! :) And now it's my turn for a really long one... warning... if you are an overly sensitive person who's dealing with fuddled feelings of raising a child that's recently been diagnosed with some type of autism spectrum disorder, stop reading now. Book mark this for later on after you've been bashing your head against the wall for a few years and you are done crying and now angry and ready for action! I know I couldn't have read this when I was in the throes of learning what autism was and still mourning the loss of the child I thought I was going to raise... but when I got mad and was ready for action, I wish someone had pointed out this correlation to me... I talk a LOT about toileting in here, because it's been one of our biggest obstacles but there's a bigger picture to be seen I hope you'll get...

In my experience, typical rewards work (and worked) great for typical kids. Those same rewards worked OK for short term issues with my Katie (be quiet for a little bit until I get this ONE thing done... use the toilet for me today), but they did not work for any major behavioral changes. Mind you, I didn't know much about Autism when we started out, and until she was 4 we didn't have a diagnosis despite my concerns and attempts to get help. Katie wasn't saying many words when she was 2, however she caught up and surpassed typical language skills (except for clarity of speech) by the time she was 3. That said, I THOUGHT I could potty train her just like I did her older brother and sister - 100% by the age of 2 using a typical potty training reward system. That didn't happen, but I continued to smash my head against the wall for YEARS (Katie is about to turn NINE and we've finally tossed the overnight pants and medical grade insentience supplies - aka pull ups). I have tried EVERY potty training system, reward, etc that exists. Each one worked for a few days, none worked for a full week (despite my trying them all for several weeks before trying something new).

Stickers? Nope, I don't want anymore stickers, in fact ,I don't even want this sticker book (rips it up and tosses it). M&M's? I had enough chocolate. Chart? I don't care if the chart gets filled up.
I think the charts seemed to work the longest, with the promise of some reward that was one on one TIME with me, or something to DO. Earning a toy or treat or anything physical - forget it. She wouldn't try long enough to make it. Blooie, I think your penny jars worked because the reward was YOU being PROUD!

I don't say this to a lot of people, because I don't think they understand it. I hope you ladies will know what I mean. I was joking around with my sister one day, and that joke turned right into an epiphany. We were discussing dog training. I think of "training" an autistic child in a similar manner as training a dog. Sure, you can train a dog with treats... but EVERY. SINGLE. TIME. the dog is going to respond more appropriately when there is a treat there and will almost never respond as well when they know you don't have a treat. You could beat them for bad behavior too, but that always ends with a dog that only behaves when you're RIGHT THERE, and they're scared of you! That's not a very good choice. Then, there's the dog that is trained with praise. Positive reinforcement. "Fido, Here!" Fido comes to you, you raise your voice a pitch and tell him how good he is and give him a bunch of loving. Those are the dogs that truly appear to love their people, and will do anything for them. They aren't scared to death of you when they do something they think might be "wrong" either. The dog trained with treats is only going to come to you quickly if he knows you have a treat in your hand. Our autistic kids are so much smarter than dogs... so the treats don't work as well! Sure, maybe they will work for some kids, but that time when you don't have the treat to reward with - same as the dog that doesn't listen as well if you don't have a treat in your hand. BUT, the praise does WORK! Not only are they happy to make you happy, but they see the accomplishment in it themselves and continue because they now know they CAN (the dog and the kid)!

I have 2 dogs... I use both treats and praise, but ONE of them came to me abused. She will do anything for me with praise as the reward. She's a different dog OUTDOORS though. There - praise only works to a point, then treats work better. The other I have had since he was a puppy. While he loves his treats and will attempt to go through everything he knows before I ask if I have a treat in my hand, he WILL do exactly what I ask inside or outside with praise alone. My theory - praise works wonders, early intervention is key, some mental damage though childhood can't ever be erased. Dogs aren't people, but they have feelings just like people, and can't express them very well like many of our non-typical kids. If I sound a little crazy comparing dogs to kids, I'm sorry! It's just one of the few things that clicks for me and the more I've read about training a dogs behaviors, the more I've applied similar strategies with my daughter, the more I see how much sense it makes. My abused dog is a Pit Bull, and she was rescued from a jerk that was fighting the dogs. She was a "bait dog" - which basically means that her life consisted of no love, living in a closet, being beaten by people was her main attention, she was regularly starved so that she would fight other dogs for food, those other dogs were always bigger and tougher than her and won the fights, she was just there fighting as a weaker dog to build the stronger dogs up. If you met her today, you'd never guess what her life used to be like... unless you brought a dog she doesn't know around, raise your voice around her, or picked up a broom. The other dog is a pug. Seeing the two together, you would NOT think that I trained them both. The pug loves every dog he meets, wags his tail at me if I yell at him, and gets right in the way of he broom. BUT - they're both housetrained, respond to verbal and non-verbal commands, and love to give kisses. Praise works. Early intervention is key to prevent damage that can't be undone. NOW... back to people!

Katie does NOT flush the toilet. She has no issues with flushing, but she "saves" it for me so that I can see and give her praise. She doesn't need me to do a "pee pee dance" like I did with her older brother (oh yes, I had a whole dance for peeing in the potty, it was quite comical). She doesn't even need me to see it immediately. But she does need me to see it, and she does need to hear the praise. Nothing special, just "I see you went in the potty! Good Job!" This has been the most simple reward possible, and it requires almost no work on my part. Well, no it has required a lot of work, because the opposite end of that is that I've had to almost completely ignore the negatives. "Oh, you peed all over the couch again and there was no waterproof pad on it so the cushion is totally soaked with urine? I'm not very happy about this, but it's not the end of the world. We'll just clean that up, and you go try to use the potty please in case there's still more pees in there that need to come out!" Back to dogs: HOW do you best housetrain a dog? Yep, watch them CONSTANTLY. KNOW the signs that they need to relieve themselves. Usher them outside and wait for them to go. The second they go, PRAISE! If they go in the house, ignore it, and don't give them any negative attention for the poor behavior. If you catch them DOING IT, you can give a quick gentle firm scolding and immediately get them outside to finish there, and then PRAISE! Kids: This is IMPOSSIBLE when there are 5 different people "training" your kid! There's no consistency! There's no way for them to hone in on the SIGNS and PREVENT things from happening to be able to give the proper reward for the positive behavior! Like Blooie's penny jar, the positive reward needs to be there... those people in school aren't giving REWARDS for positive behavior, they're ONLY responding when it's negative, because they expect the positive. EXPECT NOTHING, and reward positive behavior. I've used a similar approach with KK since she's been home with me constantly. Of course she's a BILLION times smarter than a dog... so of course we've had conversations about the behavior that I don't want to see, and she knows when I'm not happy, but there's no terrible horrible negativity. Of course, when she's just being "a kid" she does get punishments, but not when it's a behavior modification type of issue related to the spectrum. I've used this type of theory with other behaviors too. Maybe for a non-verbal kid the penny jar will work better because there's no need for conversation that way... but I do think it's the same theory!

Caleb's Mom - I'm so proud of you! It will NOT be easy. There will be times when you'll think pulling him out of school was the worst decision you ever made. You'll question your ability to teach him, and even call yourself Mom. BUT DON'T GIVE UP! When things don't work, try something else. Keep going, keep thinking outside the box. Sometimes, I've had to sit inside that box for a while to be able to put myself in the mindset of what will work to think outside of it. Curriculum choices are so abundant, and what works for some doesn't work for all. Since you're at the end of the school year - do yourself a favor and don't expect ANYTHING. #1 This is a MAJOR transition. I think it's good to try to start out with some semblance of normal. Get up, do breakfast as usual, get dressed. Do the usual morning routine to keep one thing a constant, even though the rest of your day will be so different! Then instead of a school bus or ride to school, it's sitting at the table. This doesn't have to be the norm, but I'd do it for the first week or so. Just to keep mornings one less transition. He already knows what to expect for the very beginning of the day, and that school starts in the AM, so use that to your advantage. Make your first few weeks of school all about the stuff he LOVES! Art, music, reading, etc are Kate's joys. So we spent a lot of time with those in the beginning. I don't make her write much, usually we just verbally discuss things like story lines, foreshadowing, verbs, etc. It FEELS to her like we're "just reading a book" and talking about it, not like we're "doing school". She's learned about fractions by cooking, and how time in music relates to fractions by riding in the car and clapping along (do we hear 3 beats or 4 beats? Then we talked about notes like fractions... etc) - YES I do have a white board and we do a lot of more formal stuff for math, but to start with I did everything in a way that was FUN. I'm constantly trying to find ways to make the things she hates fun! Outside the box thinking. OH you want Chickens? How much MONEY will we need to buy 6 of them? ;) ;) I personally love order and traditional school. So, it's not been super easy for me. I'd rather have a whole plan of exactly what to do each day... but that doesn't work for a LOT of kids! Every time she seems to be having problems focusing, I stop. We take a break from the grind of learning and review things in a more conversational way, sneaking in education while we make some fun crafts. We'll do that for a week or two, then go back to some formal learning.

For the rest of THIS year though, just focus on HIM! What does he NEED? Probably... he needs to TRUST that YOU won't try to cram learning down his throat the way the teachers have. That you won't go on to the next subject and leave him behind if he doesn't get something. That you'll work and work and work to help him understand the things he doesn't understand and you will not ever give up on him. NO ONE fails when they're homeschooled. It's not an option! :) Learning can be FUN and EASY! HE CAN DO IT!

If you can wrap your head around the idea that the very best reward you can possibly give is not something physical, but instead just give him the opportunity to succeed and show how proud you are when he does, THAT will be all the reward he needs. They love us so much, and things are so unimportant, and somehow they KNOW this... just reward him with YOU! :) I'm so HAPPY to say that I'm an autism mom. Yeah, there are days that I HATE it, but I have learned sooooo much from my daughter about how STUFF is so unimportant. :) Sometimes, I think that they are the ones that should be considered "typical" and it's all the rest of us with the "special needs".

When KK is having a tough lesson, I tell her we need to complete it so it won't be so tough next time. When she's about to give up and shut down, I give her a specific amount that we need to complete, with the promise of time with me doing something she loves (yup, like minecraft... but not time playing, time playing WITH me... I found just the video game wasn't a reward that worked, she'd still shut down, it was the me time that did it!).

Out of curiosity... you said Caleb is non-verbal - do you use sign language at all?
 
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Well, we followed Denver Children's Hospital's prescription today and had the KAFO's removed from Kendra's AFOs. WE didn't want to do it, Cindi didn't want to do it, and Jeremy, our local prosthetics technician didn't want to do it. The kids told Denver what we all afraid would happen, and it did.

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Kendra walking the bars at Jeremy's office WITH her KAFOs. Those are the cables that run from waist to ankle and attach to her AFO's - her Ankle/Foot braces. And you saw the video of her on Friday walking so confidently and happily down the street. This video was two weeks ago.

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This is Kendra walking the bars in Jeremy's office today withe the cables removed and just her AFOs on. Breaks my heart to see her have to work so hard to do what was coming so easily for her. We are going to send both of these video clips to Denver and ask them to explain one more time why she doesn't NEED something to help her feet stay straight.
 
Well, we followed Denver Children's Hospital's prescription today and had the KAFO's removed from Kendra's AFOs. WE didn't want to do it, Cindi didn't want to do it, and Jeremy, our local prosthetics technician didn't want to do it. The kids told Denver what we all afraid would happen, and it did.

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Kendra walking the bars at Jeremy's office WITH her KAFOs. Those are the cables that run from waist to ankle and attach to her AFO's - her Ankle/Foot braces. And you saw the video of her on Friday walking so confidently and happily down the street. This video was two weeks ago.

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This is Kendra walking the bars in Jeremy's office today withe the cables removed and just her AFOs on. Breaks my heart to see her have to work so hard to do what was coming so easily for her. We are going to send both of these video clips to Denver and ask them to explain one more time why she doesn't NEED something to help her feet stay straight.
Wow, that is tough to see how much more difficult it is for her without the AFO's. I hope if they don't give you back the AFO's, that they have a better solution in mind.

I hope you get answers soon!!
 
Wow, that is tough to see how much more difficult it is for her without the AFO's. I hope if they don't give you back the AFO's, that they have a better solution in mind.

I hope you get answers soon!!
She still has the AFOs. (ankle/foot orthotics)...they are all she has now. It's the torsion cables that go from her waist, attached to that waist belt and then to the AFOs in the first video that they removed. It is a stark difference and it makes me so mad to see her not WANT to walk after all the progress we've made!!

Without her KAFOs (which are the knee/ankle/foot orthotics), she can stand and have her feet - especially the left one - literally face in and touching, and the left one can actually face 100% backwards. She doesn't feel it because she has no nerves to her feet from about the ankles down so she doesn't self-correct. Being unable to feel the floor, she doesn't even know where her feet are pointing!! I'll see if I can find the pics I took of her feet without braces, when she's just standing.

Oh, and I was wrong...the video of her on the bars WITH her KAFOs was taken before the kids went to Denver.
 
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She still has the AFOs. (ankle/foot orthotics)...they are all she has now. It's the torsion cables that go from her waist, attached to that waist belt and then to the AFOs in the first video that they removed. It is a stark difference and it makes me so mad to see her not WANT to walk after all the progress we've made!!

Without her KAFOs (which are the knee/ankle/foot orthotics, she can stand and have her feet - especially the left one - literally face in and touching, and the left one can actually face 100% backwards. She doesn't feel it because she has no nerves to her feet from about the ankles down so she doesn't self-correct. Being unable to feel the floor, she doesn't even know where her feet are pointing!! I'll see if I can find the pics I took of her feet without braces, when she's just standing.

Oh, and I was wrong...the video of her on the bars WITH her KAFOs was taken before the kids went to Denver.
Jessica had the AFO's for her first 4 years, now she just has inserts in her shoes. She never needed any cables. She would hyper extend all her joints. In her knees it wasn't as bad, but her afo's here hard plastic forms that they took casts of her feet and formed them. We've have to redo them every time her feet grew. We'd put on her socks, then the forms, then her shoes. They only went about mid shin and got shorter and shorter as she got older. It was more to keep her ankles from rolling in.

My brother on the other hand spent his first 3 years sleeping with shoes that had bars on them holding the shoes (and his feet) in place. That was to fix his pigeon toes. We've come a long way since then.

I hope you are able to get the cables back - did they explain why they took them?
 
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Kendra standing without her KAFOs

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These are the KAFOs attached to her AFOs. The metal part is what Jeremy removed. As you can see from her climbing up on the couch, they keep her very stable and she's really confident in them. But because of her high activity level, she's snapped 2 steel cables already because they have to be torqued so much to keep her feet straight. That's dangerous.
 
Ouch, that is painful to even see. What logic did they give you in taking them away? I would think if they are treating her, they should know the benefit they provided!!!
 
Ouch, that is painful to even see. What logic did they give you in taking them away? I would think if they are treating her, they should know the benefit they provided!!!
They only see her once every 6 months, and it's a whirlwind of MRIs on her ventricles, renal ultrasounds and tests, GI series, neurologists, neurosurgeons, and orthopedics. Jenny said today that they never even saw her walk without them. Grrrrr....that's why we are sending them these two video clips. They think just the plastic AFOs will be enough - this proves they are NOT!

The cables have to be so torqued that they've become dangerous. The bruising from the last time one of the steel cables snapped was just awful. You see how much correction she needs in her feet. It's because the bones in her lower legs are twisted from the knee down - have been since birth. We did the cradle braces (the ones that go between her legs and keep them apart) and we did two years of serial casting. In fact, because of Jenny's work schedule, I usually flew with Kendra to Salt Lake for her appointments there. In order to look back and tell how old she was when she had a new set of casts put on, we'd have them use different colors or combinations of colors each time they were changed. Kinda fun to look back on them now! The other issues with the cables is that they are pulling her knees so badly that they are beginning to have problems, and since her hips have always been marginal, her thighs and knees were perfect, they now have to weigh the disadvantages of the cables over the advantages. They spun the Roulette wheel. Kendra's losing. It's all so frustrating.

She's pretty agile through the hips and thighs...we don't want to lose that while trying to fix the feet.

 
Okay, so time to either bore you to tears or inspire the heck out of you!! Katie and Kendra had their dance recital on Saturday. Frankly, neither of them are Ginger Rogers, but they just love it - the classes, the rehearsals, all of it! Kendra has an amazing helper, Lilly, who is the daughter of her dance instructor, Miss Candida. Candida was also Katie's dance teacher the first three years Katie was in dance, and we all just love her so much!

Last fall, when dance was getting ready to start up again, Candida went to where Jenny works and said, "Kendra's 4 now, isn't she? Can I have her in my class?" Jenny wasn't sure - she explained that Kendra can't really follow directions, and of course she'd have to remain in her wheelchair. Candida told Jen that she had that all figured out - her daughter wanted to be Kendra's helper, and that the other parents were not only on board with it, they were excited about it! Then Jenny told her she didn't think they could afford to have both girls in dance. Well, that was just plain silly, because we've always told them as long as Katie wants to dance, we'd be more than happy to provide. But Candida had that figured out too. She said if Jenny would clean the dance studio once a week, the girls' tuition was covered! All we had to buy were their costumes. So Katie and Kendra were both signed up!

I don't even know how many dance recitals this is for Katie, but this was their second of this year. They always do one in the winter just before Christmas, and then one the end of April. The socialization benefits for Katie have been obvious from the start - we were amazed at how Kendra blossomed! Okay, she doesn't really dance, but she's there, she's loving every minute of it,and her confidence is through the roof when that costume goes on. This year Kendra's class had 4 dances - two with her class, one with the other preschool class, and then the finale. She sailed though them!

Not bad for two little girls with Autism and other issues!! Katie is missing a rib and has asymetrical hips. She's also on the overweight side. But despite my poor video skills, look at her face. We are so proud of her.......

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And of course Kendra - not a whole lot of dancing but a lot of smiling and joy all the same!

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If my heart gets any fuller it will burst!!
 

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