We had our third SPD Support Meeting last night with a behavorial therapist and an occupational therapist. They fielded our questions on "what to do when" and gave us some great advice. It was a relief to hear that other parents had some of the same questions we did and there are some things, at least, that we are already doing right.
I love my group.
Showing posts with label SPD. Show all posts
Showing posts with label SPD. Show all posts
Friday, November 20, 2009
Monday, November 16, 2009
Wee Yeasties!
I'm reading a fantastic book right now, Special Needs Kids Eat Right. I was putting off reading it because I thought that surely it was going to be 300 pages on how my kids needs to eat more veggies. It's not. I'm not sure if you've kept up with the news, or if you even care, but there are a ton of parents out there that are recovering their children from Autism. This book details this process they are using. This soon will be the process that we are using to try to help Connor. I have hope in Fish Oil, but since he has all of the symptoms of Candida yeast overgrowth... what if it's that? It is possible that he has too much yeast in his body, from Colic as a baby which caused Leaky Gut Syndrome which was exacerbated by antibiotic usage, (heavy antibiotic usage from ear infections) causing a cycle of complete yeast overgrowth.
Connor eats plenty of veggies and even takes fish oil without complaint. Tristan on the other hand exists primarily on carbs, specifically crackers, chips and cereals. Tristan actually randomly breaks out in yeast infections. Behind the ears, on his mouth. His last one appeared right after Halloween. There's the sugar link. What I'm saying is this. It is entirely possible that both of my children are so yeasty that it's affecting their health. In Connor's case it could be affecting his focus, attention and memory.
Ok, so you are on board with this, now what do you do?
You find a peditrician to prescribe an anti fungal like Diflucan or something. If you listen closely here, you can hear peditricians hysterically laughing at this. Because you'll probably never find one that will prescribe this, unless you can land a DAN doctor somewhere in the area. What then? You starve the yeast while supplementing with probiotics. Starve the yeast... that sounds easy, right? Sure. If you don't mind going gluten free, malt and vinegar free and sugar free. For me that would be hard. For Connor, it would be so incredibily difficult. Or would it? Is is worth not eating a cupcake for three months to be able to focus again? To not be shuned by other children and to be able to make friends? If you ask him now, he'd say no. Ask him twenty years from now and he'd probably have a different answer.
Are we going to try it? I think so. Maybe first of the year. In the meantime I'm going to start weaning him off of the gluten. Study up on what I need to do, get the hang of administering probiotics and maybe get a small bank loan since it's crazy expensive to eat gluten free. Is this crazy? Sound off for me here people. All lurkers are welcome to comment.
Connor eats plenty of veggies and even takes fish oil without complaint. Tristan on the other hand exists primarily on carbs, specifically crackers, chips and cereals. Tristan actually randomly breaks out in yeast infections. Behind the ears, on his mouth. His last one appeared right after Halloween. There's the sugar link. What I'm saying is this. It is entirely possible that both of my children are so yeasty that it's affecting their health. In Connor's case it could be affecting his focus, attention and memory.
Ok, so you are on board with this, now what do you do?
You find a peditrician to prescribe an anti fungal like Diflucan or something. If you listen closely here, you can hear peditricians hysterically laughing at this. Because you'll probably never find one that will prescribe this, unless you can land a DAN doctor somewhere in the area. What then? You starve the yeast while supplementing with probiotics. Starve the yeast... that sounds easy, right? Sure. If you don't mind going gluten free, malt and vinegar free and sugar free. For me that would be hard. For Connor, it would be so incredibily difficult. Or would it? Is is worth not eating a cupcake for three months to be able to focus again? To not be shuned by other children and to be able to make friends? If you ask him now, he'd say no. Ask him twenty years from now and he'd probably have a different answer.
Are we going to try it? I think so. Maybe first of the year. In the meantime I'm going to start weaning him off of the gluten. Study up on what I need to do, get the hang of administering probiotics and maybe get a small bank loan since it's crazy expensive to eat gluten free. Is this crazy? Sound off for me here people. All lurkers are welcome to comment.
Wednesday, November 04, 2009
Dyslexia, Dyspraxia and ADHD - Can Nutrition Help?
I am constantly on the lookout for new information on ADHD, SPD, ADD and Dyspraxia. So far Connor has SPD and Dyspraxia (which is a form of SPD) but I know that in two years when Connor is in first grade the teachers are going to start in on us about medicating him. He's a difficult kid. But I'm not concerned nearly as much about how it inconveniences his teachers as I am about what an inconvenience it is for him. I am hell bent and determined, that by the time he gets to first grade, we have this thing licked or rather - managed. We've been working really hard to practice his letters each night and tomorrow we are starting gymnastics to help with the postural issues. Attention focusing is still difficult. We aren't eating apples for allergy testing and are using a Homeopathic A+ Attention remedy that seems to not be working at all. Tonight when I was researching, (I should totally have a PhD in Google Research) I found this study. This study focuses on deficiencies of highly unsaturated fatty acids (HUFA) in children with various conditions including, Dyspraxia, ADHD and Dyslexia. I've added it to my collection.
I think that the rise of disorders like ADHD, Dyslexia and Dyspraxia is more than about a population increase. Especially ADHD, which has risen so high that we must be looking at an environmental factor or a dominate gene. So, if you know someone that has or has children with any of these conditions it might be worth sending them this study. I'll be sure to post any results from any experimentation we undergo.
I think that the rise of disorders like ADHD, Dyslexia and Dyspraxia is more than about a population increase. Especially ADHD, which has risen so high that we must be looking at an environmental factor or a dominate gene. So, if you know someone that has or has children with any of these conditions it might be worth sending them this study. I'll be sure to post any results from any experimentation we undergo.
Sunday, September 27, 2009
SPD Support Charlotte
The Monday before my SPD Support group meeting, I woke up at 7am and my hands were shaking. I didn’t have a nightmare, my blood sugar wasn’t low, I was nervous… four days before. By the time Thursday came, I had it pushed out of my mind until the drive up to the meeting location, where the only thing I could do to distract myself was to grab the nearest unscratched CD and blast it as loud as it would go. I would like to interject here that no matter how good you look, what you are listening to, or where you are driving, it is impossible to be cool while driving a minivan. Once I arrived at our chosen venue, (local restaurant with backroom), people slowly started coming in. I was drinking a beer, praying that the liquid courage would work its magic.
Apparently it did.
I was really nervous when I first started talking to the group. Everything I had rehearsed in my head a million times was gone as the panic took my words away. We were sitting in bar stools at the end of the room so that everyone could see us and because I was holding a beverage, it made it possible to hold on tightly enough that you couldn’t see my hands shaking.
I told my story, which was much shorter and less poignant that I had hoped it would be, thanks to my nervousness but once I was finished talking, I relaxed and was able to speak to the group without feeling like my heart was going to leap through my chest.
I believe that this group is needed. I believe it so much, that I don’t give a shit if I get up there and uncontrollably shake each time I talk to them. What is one person’s embarrassment to the salvation of 20? Or 19, which is how many people we had at the first meeting. It was amazing.
When I was telling my story and talking about Connor rubbing poop all over everything for several weeks, there were people that were emphatically nodding. When I talked about how frustrating it is to have a child that’s out of control or to have people tell you that all you need to do is provide more discipline when you know that you are being as consistent and possible and might in fact, be more strict than a lot of parents that you know, people were nodding… not just smiling and nodding either, nodding because they understood. Because they too had been though the confusion, the judgment that comes with having an SPD kid. I had known them all for about 15 minutes and they understood me. And I understood them. And we were starving to talk to each other.
The group members passed around information about diets, doctors and books. They talked about their frustrations with the pediatricians not understanding and their families that didn’t think there was anything wrong with their child. They talked about how long it took to figure out there was a problem and no one has every heard of SPD. They talked. And talked. And talked.
My co-host, Susie and I were still sitting at the front of the room, more as spectators of the discussion than members of it, because we were running the show. Susie mentioned that next time she wanted to be sitting at the table and I couldn’t have agreed with her more.
So far I’ve had over 50 people contact me about the group. I don’t know that we’ll have that many people show up at each meeting, but I do think the group may get even larger than that as the news spreads that it’s out there. I’m just glad that we are able to offer support to so many parents who, like me are starving for connection. We are going to need to find a bigger meeting room.
Monday, July 27, 2009
The Next Attention Deficit Disorder?
The Next Attention Deficit Disorder?
I'm so thrilled to see some attention given to SPD. It's such a relief when I meet someone that knows what it is so I don't have to launch into a detailed explaination of it all.
I'm so thrilled to see some attention given to SPD. It's such a relief when I meet someone that knows what it is so I don't have to launch into a detailed explaination of it all.
Tuesday, July 07, 2009
Dear Connor - 4 Years, 9 Months
Dear Connor,
Finally you are starting to emerge from the chaos. When I say, you... I mean, YOU. It must be difficult to live in a world of visual and auditory distraction. To not be able to organize your own thoughts or to be in time out every thirty minutes because you can't control your impulses. Finally, you are starting to slow down.
At first I thought that maybe it was just a phase, but now I'm starting to feel like maybe it's going to stick around. Maybe the intensive therapy is starting to pay off already. It's been four days in a row and you've been in trouble less and coherent more. There is no hope like the hope of a Parent. This is something I know for sure.
When we started the therapy they said that we'd see changes in as little as six weeks. I had heard from other moms that major changes could come about in two weeks. In two weeks, you had gone the other direction, getting worse, before you were getting better, something that was quite hellish, when you add in the stress of continual therapy.
Because we've had no one to talk to, save the friends of friends that have Sensory kids and have been kind enough to spare me a few minutes on the phone to listen to me, I and another Mother with a Sensory kid have decided to head up the Sensory Support Group in Charlotte. We are trying to get it started through the SPD (Sensory Processing Disorder) Foundation and have a long road ahead of us. We are dabbling in the Foundation to see how it goes, but it's entirely possible that we'll end up starting something of our own. I guess one child's misfortune can be another child's salvation. I hope we can help some people.
Aside from the daily excitement of therapy we've not been doing much this summer. You've honed your obsession with building contraptions, using anything available and various rolls of tape or blankets. I sometimes wonder if you were Macguyver in a past life. By the time you read this entry, Macguyver will be one of those pop culture references that you don't know. It will be a word that's as unfamiliar as album, cassette or cash. Google it babe. I'll bet that's something that's still around.
I've divided the remaining weeks of the Summer into theme weeks. This sounds much more June Cleaver, (another name for you to Google) than it is. Basically, I get so paralysed by my analysis of what to do each day, we sometimes end up doing nothing because the things to pick from are just too overwhelming. So, this week. Indian Week. Next week is Pirate week and so on. It's easy for me to think of an Indian related (or Native Americans as the nice lady at the library with a dot on her forehead reminded me) craft or project to do. You are so crazy into this. I should have thought of it sooner. Really, it's quite genius. Each week will end on a Saturday and we'll have some sort of Grand Finale. I'm not sure what the Indian week finale is going to be... but you'd best be glad that you're not 16 or we'd be out back building a sweat lodge. I wonder if the neighborhood association as a rule against those?
I love you more than ever.
Mommy
Finally you are starting to emerge from the chaos. When I say, you... I mean, YOU. It must be difficult to live in a world of visual and auditory distraction. To not be able to organize your own thoughts or to be in time out every thirty minutes because you can't control your impulses. Finally, you are starting to slow down.
At first I thought that maybe it was just a phase, but now I'm starting to feel like maybe it's going to stick around. Maybe the intensive therapy is starting to pay off already. It's been four days in a row and you've been in trouble less and coherent more. There is no hope like the hope of a Parent. This is something I know for sure.
When we started the therapy they said that we'd see changes in as little as six weeks. I had heard from other moms that major changes could come about in two weeks. In two weeks, you had gone the other direction, getting worse, before you were getting better, something that was quite hellish, when you add in the stress of continual therapy.
Because we've had no one to talk to, save the friends of friends that have Sensory kids and have been kind enough to spare me a few minutes on the phone to listen to me, I and another Mother with a Sensory kid have decided to head up the Sensory Support Group in Charlotte. We are trying to get it started through the SPD (Sensory Processing Disorder) Foundation and have a long road ahead of us. We are dabbling in the Foundation to see how it goes, but it's entirely possible that we'll end up starting something of our own. I guess one child's misfortune can be another child's salvation. I hope we can help some people.
Aside from the daily excitement of therapy we've not been doing much this summer. You've honed your obsession with building contraptions, using anything available and various rolls of tape or blankets. I sometimes wonder if you were Macguyver in a past life. By the time you read this entry, Macguyver will be one of those pop culture references that you don't know. It will be a word that's as unfamiliar as album, cassette or cash. Google it babe. I'll bet that's something that's still around.
I've divided the remaining weeks of the Summer into theme weeks. This sounds much more June Cleaver, (another name for you to Google) than it is. Basically, I get so paralysed by my analysis of what to do each day, we sometimes end up doing nothing because the things to pick from are just too overwhelming. So, this week. Indian Week. Next week is Pirate week and so on. It's easy for me to think of an Indian related (or Native Americans as the nice lady at the library with a dot on her forehead reminded me) craft or project to do. You are so crazy into this. I should have thought of it sooner. Really, it's quite genius. Each week will end on a Saturday and we'll have some sort of Grand Finale. I'm not sure what the Indian week finale is going to be... but you'd best be glad that you're not 16 or we'd be out back building a sweat lodge. I wonder if the neighborhood association as a rule against those?
I love you more than ever.
Mommy
Monday, June 22, 2009
Silly's All We Got
It's getting more and more difficult to find things that are new and interesting for Connor to do for his heavy work. Tonight we got the five lb, soft squishy weight ball and had him throw it over and over onto an empty diaper box crushing it. He was so happy he was able to legally destroy something in the house, I don't think he realized he was doing the "heavy work" part of his therapy. We've had to get creative so far to find things that interest him. I've filled a gallon juice bottle with blue colored water, glitter and sparkles and we played hot potato with it, or pretended like it was a baby that had to be rocked and then put to bed. We've used the 5lb stick weight to shoot aliens. We have wheelbarrow and crab walked all over the house. We bulit a 12" square board with casters that rotate 360 degrees for him to sit on and pull himself around the house by using his hands. And that's just a few of the fun and exciting things we do all day. He needs to do things that would be to us, a good work out. He only does the heavy work for about 5 minutes and after that he needs to be tired from it. I can't believe how much strength he's built up in just two weeks. And this is where I need your help. I welcome any suggestions or ideas for things and are both fun and strengthening for him to do. Send me your ideas even if you think they are silly. Round here some days, silly's all we got.
Friday, June 12, 2009
What it is
I haven't had much time to write because I've been busy doing therapy with Connor every 90 minutes. I know I said I would post more info about the Sensory Processing Disorder, but it's taken me this long to get a grasp on what it is, what is does and how we are going to fix it.
Connor was diagnosed with Sensory Seeking type of Sensory Processing Disorder. This disorder is also called, Sensory Integration Disorder, Sensory Modulation Disorder or Sensory Integration Dysfunction. It seems to be if they would just pick a name, maybe there would be less confusion. The Sensory Seeking part of the disorder, appears much like ADHD in a child. You know the child that can't sit still or stop talking. The child that is constantly running into other children on the playground or hitting them self or basically doing anything that will provide the stimulation they are so desperately craving.
In addition, he was diagnosed with Dyspraxia, which manifests in a fine motor skill delay. I always thought that maybe he wasn't into coloring and drawing because he didn't get the art gene. In fact, it's more likely that it's difficult for him to do because holding a pencil is hard for him. So is holding a toothbrush or a fork or anything else that requires a strong grip for functionality. It's difficult for him to catch a ball as well, which on the playground sometimes leaves him left out of ball games.
Also, they found that he has Low Muscle Tone, which, attributes to the Fine Motor Delay as well.
And this is what we are doing about it. Right now, he has therapy every 90 minutes.
His therapy consists of brushing his body, (to wake up the nerve endings that are desensitized). Then compressions where we push into the joints, for example, taking the arm while holding the elbow and pushing it back into the elbow, (this is supposed to give him the deep tissue sensation that he craves). Then there is five minutes of spinning or swinging or rolling to stimulate the hairs in the ears, which brings a nervous system response or stimulation and then since he’s pumped up after, we have to bring him down with five minutes of heavy muscle work, (lifting heavy objects, push ups, sit ups or wheelbarrow walks). The lifting heavy objects does seem to calm him down, so I’ve been having him help with more heavy work around the house.
All of this is basically retraining his nervous system. The Sensory Seeking kids, get ramped up and don’t have the ability to come back down. Doing the hard muscle work, forces their nervous system back down, sort of training it. Some of the therapy seems a little strange, but if it produces results, we'll do anything. He’s getting to where he starts to fight me on the heavy muscle work because he’s getting tired of having to do it. At least during the day he gets a solid 15 minutes of Mommy time 5 times during the day, in addition to our other activities. Jorma does therapy number 6 in the evenings. The therapy is supposed to only be every 90 minutes for a few weeks then it goes to every 2 hours then it will move to every 3 and so on. This will continue for the next nine months, at which point they will evaluate him again and see if he needs more.
All of this is hard for me too, because it seems like as soon as I start doing something, I have to stop and do his therapy. Then there’s Tristan who is starting to get jealous and doesn’t understand why Connor gets to swing and spin with Mommy and he doesn’t. His response has been bad behavior to get extra attention. It’s tough. Sometimes after I am finished with Connor, I have to then do “therapy” for Tristan, doubling the therapy time. I feel lucky to have time to throw in a load of laundry.
Or blog. In fact, above is mostly an excerpt from another email I sent to a friend that was asking after Connor. But I wanted to post some information for those of you that are checking the blog to see how things are going.
Things are going well... considering Mommy feels like she's drowning some days.
They said that in six weeks we will see a drastic difference in Connor. I've heard from other Moms that in just two we should start to see improvement. I'm looking forward to it, not just for our own good, but for Connors. It must be awful to not be able to stop doing the things that you know will get you in trouble. I can't imagine how it must feel to go into shutdown each night due to over stimulation, (this is what led us to start seeking help in the first place). Connor would get so ramped up that he couldn't even eat his dinner. It's like he was having a mini nervous breakdown each evening and while it was hard on us, certainly it's even harder on him. I'm just glad that we were able to find some resolution and hopefully start taking the steps that he needs to get him back on an even keel again.
Connor was diagnosed with Sensory Seeking type of Sensory Processing Disorder. This disorder is also called, Sensory Integration Disorder, Sensory Modulation Disorder or Sensory Integration Dysfunction. It seems to be if they would just pick a name, maybe there would be less confusion. The Sensory Seeking part of the disorder, appears much like ADHD in a child. You know the child that can't sit still or stop talking. The child that is constantly running into other children on the playground or hitting them self or basically doing anything that will provide the stimulation they are so desperately craving.
In addition, he was diagnosed with Dyspraxia, which manifests in a fine motor skill delay. I always thought that maybe he wasn't into coloring and drawing because he didn't get the art gene. In fact, it's more likely that it's difficult for him to do because holding a pencil is hard for him. So is holding a toothbrush or a fork or anything else that requires a strong grip for functionality. It's difficult for him to catch a ball as well, which on the playground sometimes leaves him left out of ball games.
Also, they found that he has Low Muscle Tone, which, attributes to the Fine Motor Delay as well.
And this is what we are doing about it. Right now, he has therapy every 90 minutes.
His therapy consists of brushing his body, (to wake up the nerve endings that are desensitized). Then compressions where we push into the joints, for example, taking the arm while holding the elbow and pushing it back into the elbow, (this is supposed to give him the deep tissue sensation that he craves). Then there is five minutes of spinning or swinging or rolling to stimulate the hairs in the ears, which brings a nervous system response or stimulation and then since he’s pumped up after, we have to bring him down with five minutes of heavy muscle work, (lifting heavy objects, push ups, sit ups or wheelbarrow walks). The lifting heavy objects does seem to calm him down, so I’ve been having him help with more heavy work around the house.
All of this is basically retraining his nervous system. The Sensory Seeking kids, get ramped up and don’t have the ability to come back down. Doing the hard muscle work, forces their nervous system back down, sort of training it. Some of the therapy seems a little strange, but if it produces results, we'll do anything. He’s getting to where he starts to fight me on the heavy muscle work because he’s getting tired of having to do it. At least during the day he gets a solid 15 minutes of Mommy time 5 times during the day, in addition to our other activities. Jorma does therapy number 6 in the evenings. The therapy is supposed to only be every 90 minutes for a few weeks then it goes to every 2 hours then it will move to every 3 and so on. This will continue for the next nine months, at which point they will evaluate him again and see if he needs more.
All of this is hard for me too, because it seems like as soon as I start doing something, I have to stop and do his therapy. Then there’s Tristan who is starting to get jealous and doesn’t understand why Connor gets to swing and spin with Mommy and he doesn’t. His response has been bad behavior to get extra attention. It’s tough. Sometimes after I am finished with Connor, I have to then do “therapy” for Tristan, doubling the therapy time. I feel lucky to have time to throw in a load of laundry.
Or blog. In fact, above is mostly an excerpt from another email I sent to a friend that was asking after Connor. But I wanted to post some information for those of you that are checking the blog to see how things are going.
Things are going well... considering Mommy feels like she's drowning some days.
They said that in six weeks we will see a drastic difference in Connor. I've heard from other Moms that in just two we should start to see improvement. I'm looking forward to it, not just for our own good, but for Connors. It must be awful to not be able to stop doing the things that you know will get you in trouble. I can't imagine how it must feel to go into shutdown each night due to over stimulation, (this is what led us to start seeking help in the first place). Connor would get so ramped up that he couldn't even eat his dinner. It's like he was having a mini nervous breakdown each evening and while it was hard on us, certainly it's even harder on him. I'm just glad that we were able to find some resolution and hopefully start taking the steps that he needs to get him back on an even keel again.
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