Wednesday, December 23, 2009
Sunday, December 20, 2009
As I was going through some of the piles shoved further to the back, I realized there were boxes there that were five years old! As I was going through and trying to decide what to keep and what to toss/freecycle, I realized how much we had put on hold ever since Michael got his diagnosis. Our world has revolved around him for the past five years, almost to the exclusion of all else. Not that this is a bad thing - he has made such tremendous progress. But, kinda sad in another way when I look back on the things that used to matter to me.
I was talking with Steve and we realized that our life has changed so much since October. That was when we realized that Michael finally had the perfect placement (for him), and that he was incredibly happy where he is, and hopefully we have a break from fighting the 'system' to get him that placement.
October is also when we started seeing results from a new antioxidant we have been trying. Michael is happy. He's learning. We aren't having the daily battles we once did. A bad day now used to be an incredibly good one - just a year ago. I have so much to be thankful for!
So, now that we aren't in constant battle mode, there is actually time for us. We've taken a vacation. We've spent time together. Now, it's time for me to focus on my own health, and trying to get the house back. I'm not sure if there is any hope for the carpets (supplements really stain when they come back up!) but who knows, maybe the rest of the house can be guest-ready.
On that same topic, we finally broke out a new set of dishes. I had bought them soon after we moved into the house, intending to invite people over for dinner. It's a beautiful set, with all the serving pieces. But, after life started spiraling out of control, I lost hope of having guests and the set got banished to the garage. Yesterday, we brought them in, washed them all, and loaded the cabinet. Anyone want to come over for dinner? It will still be allergy friendly and life is still chaotic, but I have hope.
Does any of this mean that we are less focused on Michael and his recovery? Not at all. It just means that he is finally doing well enough that we can have other interests and maybe a few tiny moments of 'normal'. It's a Christmas wish so it has to come true, right?
Friday, December 18, 2009
Tuesday, December 15, 2009
Tonight we gave Michael a grilled cheese sandwhich. He hasn't been able to have one since we went gluten/casein/soy free. He normally doesn't care much about food, but tonight he actually asked if he could have another sandwhich. I don't know if my heart broke more that it took so long to find a 'cheese' he could eat, or that he was so happy.
I never thought it would be so hard to find a cheese like product that didn't have soy/dairy/wheat, etc and actually melted and tasted good. But, finally, we have one and the house is happy. Now, please don't let the grocery store ever run out!!!
Here is a link to their website - you can see if there are any ingredients I overlooked, or if they have it near you. I am one happy mommy!!!
Thursday, December 10, 2009
Steve and I started to play it, hoping to pique his interest, and it actually worked! There are a lot of things to do - listening to carols, decorating a tree, opening an advent calendar, and a a few cute mini games. (Yes, I'm totally addicted to one of them). What's really cool is that you can play the game no matter what level you are at. I'm hoping this one lasts til next year!
So, is it good to trick him into liking a video game? I'm not sure on that one, but it's great to see him smile, and have him be able to win some of the games with Steve and I really trying. He's getting fast, his hand-eye coordination is great, and I'm just thrilled. I never expected a game to be a real present to me.
Monday, November 30, 2009
Saturday the three of us went to cranio. Steve had an appt first, so Michael and I had an hour to kill in the waiting room. I was really worried he would act out and I wouldn't be able to keep him in the waiting room until his appointment. (In the past, my not feeling well was a great cue to take advantage) Not this time! Michael sat nicely on the couch and played with his Leapster and Twist n Shout math game. He even interacted with people as they came and went. Very, very impressed!
Sunday I asked Michael if he wanted to learn a new game with me. He actually let me teach him how to play dominoes, and picked it up incredibly quickly. But, what I love the most is how much of a good sport he is. He didn't try to manipulate the rules so he could win, and was genuinely happy for me when I won. I was so proud of him!
Overall he had a great holdiay. I know he missed school, and was anxious to go back this morning, but it was nice to just spend some time with him. I wish I had been feeling better to enjoy it more, but I definitely got the impression that he was looking out for me since he knew I wasn't feeling well. I know he still has a long road ahead of him, but each step seems to be getting more comfortable, and more confident!
Wednesday, November 25, 2009
I try not to beg for money very often, but these two brothers really make my heart ache. If ten people would just loan $20 each, their loan would be funded before thanksgiving. This is a VERY short term loan - you would have your money back in 6 months. Just think of the impact you would have on their lives and the tiny impact it would have on your own wallet. If you have anything to be grateful for this year, please consider making a loan for these sweet boys!
Saturday, November 21, 2009
Michael has been doing amazingly well. Many kids get angry with their parents when they come back from time away. Michael was so happy to see us, wanted to be hugged and kissed right away, and even asked us how our trip was. I was so shocked by the question and happy with the hugs! He was great for Dan while we were gone, and even did well in school. I guess he really is getting much more flexible.
We are keeping up with HANDLE, cranio, enhansa, and isotonix. I really think the combination, along with other general nutritional support is just helping Michael get stronger and stronger. And, taller and taller. Tonight I have to see how tall he is. It seems like he grew at least an inch while we were gone!
Today I am hoping to reclaim the kitchen, and maybe I can get a helper.. wish me luck!
Friday, November 6, 2009
We are so used to hearing that regression following childhood immunizations is just 'coincidental' and that the the autism was there all along. Now, as horrible as this is for Desiree to have to experience, at least she is able to put into words what so many of our children experience, and can't express. I am so happy to be able to post the second video, showing the dramatic improvement biomedical treatment can bring about. I wish every child hurt by a vaccine could get the same results!!!
Desiree After Receiving Seasonal Flu Shot:
Desiree AFTER Biomed Treatments:
Thursday, November 5, 2009
I just wanted to remind everyone that today is Cinco de Linco at Lend for Health. A lot of us have really tight funding and don't think that we can make a difference. But, when we get together, we can make a HUGE difference, one child at a time.
I *REALLY* want to see Gabriel & Christopher's loan funded. These two kids are in so much pain, they need relief, NOW. Please, if you can give up one fast food meal to help them, I would really, really appreciate it.
Every little bit helps!!!!
Thursday, October 29, 2009
Michael lost BOTH his bottom baby teeth today!! The school nurse called to tell me. And, they sent him home with two little tooth necklaces (taped shut), one for each tooth. What kind of school pays so much attention to details to have this on hand!!! Have I mentioned how much I LOVE LOVE LOVE his school????
And, how fitting is it that my super achiever doesn't lose one first tooth like everyone else... he has to do 'both at the same time' as he is so fond of saying?
Sunday, October 25, 2009
One of the things that frustrates us with playdates is that Michael really doesn't like to play board games, or pretty much any 'regular' game. But, the last couple days he has been playing Mario Party 8 with me and Steve. He has played it before, but always insisted on playing by himself. Now, he is playing with us, taking turns nicely, and really being a great sport. So, now we just need to see if this new skill can translate to a playdate!
It is so nice to be able to do 'typical' things with him and just have a great time. Of course, since I know what a hard time some spectrum kids have with empathy and winning/losing, I am just bursting with pride that he is handling the game so well. Yeah Michael!!!!
I finally edited some of the pictures from Bounce U. Now, I'll see if I can post them. I am still in awe of how well my little guy can climb, balance, and even throw overhand! This from a kid who refused to jump over a line drawn on the floor just a couple years ago!!!!
Wednesday, October 21, 2009
When Steve and Michael got there, there were only two other children there. The three of them had the whole place to themselves!! Michael was climbing things I NEVER thought he'd be able to climb, throwing a ball overhand at targets, and generally having an awesome time.
One of the best parts was a huge round climber where he had to use his arms to pull/push himself up through a mesh to get to the next level. It took him a while to figure it out, but he did it, and Steve got a huge "TADA" when he got to the top. I don't think I've ever seen Michael looking so happy and proud of himself.
Steve took so many pictures and video it feels like was there with them. I am a little nervous that there were so few kids.. I really want them to do another special needs night so that kids like Michael who would normally be too intimidated get a chance to find out how fun it is. So, if you are local, I'll definitely be posting when the next one is announced. Definitely an event not to be missed!
Tuesday, October 13, 2009
I've been trying really hard to get back into an exercise routine. I have been using the wii fit for yoga the last week or so, but haven't been very impressed with the cardio and strength pieces. So, yesterday I started with EA Sports Active. Let's just say that it really, really kicked my butt yesterday, and more so today.
I was sitting on the couch after today's workout feeling really silly for not filling my water glass before the workout. Then, Michael came bounding into the room full of energy and happiness. (Have I mentioned how much I love Enhansa, and Cranio, and HANDLE???) He filled my water glass 4 times for me! Each time he wanted to take a sip and then laughed while I downed the rest of the glass. He thought it was the funniest game, and I thought he was the best son in the universe. Not bad, huh?
This is a fascinating article from David Kirby. It sounds like the science is strong, and well-respected. I hope to hear more about it, and soon!
Things with us are really, really good. It's nice to be living mostly calm for a little while. Not quite sure what to make of it, but boy am I happy! Hopefully I will be able to post some good things soon, as soon as my work crisis calms a little. (Wouldn't it be nice to be calm at home and work at the same time???)
Monday, October 5, 2009
Saturday, October 3, 2009
Tuesday, September 29, 2009
Then, he came home and played nicely, listened to us, talked with my Aunt on the phone, and did his homework quickly/well. I am not even sure that I recognize him tonight!
Could all this be due to the new purple juice? Or is it a combination of the new juice, the enhansa, and the HANDLE all working together? Whatever it is, I am one happy Mommy!
Alert After U.K. Cervical Cancer Vaccine Death
Sunday, September 20, 2009
When I realized they were all there for flu shots, I almost cried. Seeing all those beautiful faces, and knowing that the shot they were about to get was full of mercury made me want to cry. I wanted to ask the parents if they knew what they were doing to their children, if they truly understood the risks. But, we were running late, Michael had elevators to ride, and I didn't have the strength to fight any more battles.
Saturday, September 19, 2009
Yesterday he stole some of Dan's apple chunks, now today he wanted pineapple. He even drank some of the juice when I poured it into a cup. I don't want to attribute this wonderful behavior too quickly, but boy am I excited!
Friday, September 18, 2009
Thursday, September 10, 2009
Wednesday, September 9, 2009
NAA's How Much Longer Campaign is NOW LIVE in our Action Center and ready for you to send a LOUD message to President Obama, the FDA, the CDC, the National Institutes of Health, the American Academy of Pediatrics, the Department of Education, the Advisory Committee on Immunization Practices and all of America! Your messages will be sent automatically to the above recipients with just a click of your mouse.
How much longer must our children and families wait for insurance coverage, meaningful research, safer vaccines, effective treatment, appropriate services and support, a safe educational environment and for autism to finally be recognized as a national crisis?
Go to the NAA Autism Action Center now and let your voice be heard!
Wednesday, September 2, 2009
In the past decade, we've asked for government aid, insurance coverage, and meaningful research for our children with autism. We've asked for the abuse in schools to stop, for vaccines to be held to higher safety standards, and for our children to be treated for their medical issues. Most of all, we've asked for autism to be declared a national health crisis.
We've asked for these things politely, impolitely, loudly, softly, creatively, professionally, in small numbers and in large...we’ve asked and we’ve asked again. But as it stands today, we have more cases of abuse, wandering-related deaths, seizure-related deaths, bankruptcies and divorce in our community than ever before.
With the fatigue that comes from constant uphill battles, along with a gross lack of resources, we live in a permanent state of asking one question: How Much Longer? How much longer will we continue to see the numbers climb? And our children die? And research funding go to the wrong places? And our children be abused? And health agencies avoid the real issues? Really, how much longer can this crisis continue before we turn a corner? When it’s 1 in 75 kids? 1 in 50? 1 in 25? Do we really want it to get that point? Tired or not, we have to kick it up a notch.
So our plea to you is this: take two minutes out of your day on 09-09-09 to join our How Much Longer For Autism campaign – a mass mailing/faxing/calling campaign done through NAA’s easy web-based advocacy software. It costs nothing, and could finally create the awareness we need.
Will you help? Say yes only if you don’t mind a little controversy. This campaign isn’t warm and fuzzy and it’s far from polite. It’s edgy, sarcastic and harsh at times, but when you live day to day seeing an increasing number of children suffer from vulgar abuse, impossible challenges, even death, you tend to put graceful asks aside for a message that people might actually notice.
Will you help spread awareness? Take a stand for a healthier future? Raise your voice for civil rights and an end to abuse? Then please visit: http://naa.kintera.org/actioncenter and get ready to join us on 09-09-09!
For more information and to preview our 09-09-09 messages, visit http://www.nationalautismassociation.org/howmuchlonger.php.
Sunday, August 30, 2009
The most obvious benefit of the wii is in gross motor skills and general exercise. Our two favorite games are the new Sports Resort game, and the older Outdoor Challenge. Both of these games have activities that require a ton of movement and coordination. On a day when Michael needs to burn off energy but can’t get outside, they are perfect.
What I like the best is that the game is set to adapt to each user’s current level. There are some activities that require jumping and running, others where you can sit and move only your upper body. As you get better at each activity, you get more levels and options – a great incentive to keep practicing.
I was surprised at the level of fine motor skills that are required for some of the games. For example, in the Island Flyover game in Sports Resort, you are looking for 80 different points of interest around the islands. Some are easy to get to, but others require a great deal of fine motor skills (i.e. flying through tunnels).
The archery game requires hand-eye coordination in order to hit the targets and get the most points. There is also a sword-based speed slicing game that combines visual processing speed and fine motor control. The object is to slice an object before you opponent, using the direction indicated on screen. On one hand, it’s simple, but it also requires fast processing of both vision input and motor output.
All the things I’ve talked about so far are fairly straight-forward physical benefits. What isn’t so obvious is the social skills building that the game provides. The first is simple turn-taking. Each player gets a turn, and has to wait for their next turn. But there are also levels of sportsmanship and teamwork that are often overlooked. Working together toward a common goal often brings out the best in kids, even if that goal is just to move your canoe faster than the other team.
Another final, hidden benefit of the wii is how it can mask social awkwardness. Michael can’t sit and play a board game with you, but he can bowl. Just being able to turn on the wii has saved many playdates from disaster. Other kids can overlook social deficits if they are genuinely having fun, and are willing to come back and play again. A very nice thing for our kids!
I don’t think I’ve met a parent who has a child on the spectrum and a wii who has regretted the purchase. Most parents value one set of benefits more highly than others, but everyone understands how good it is for their child. So, how do we contact Nintendo for an autism grant?
Saturday, August 29, 2009
The classroom he is in only has five boys right now, although it can go up to nine. There is one teacher and two assistant teachers. Plus, two of the boys have dedicated one-on-one support. So, there are five adults in the room almost all the time, with OT, PT, and Speech therapists, a behaviorist, and social worker coming in and out to work with the kids.
But, the very best part is how well all the teachers and staff understand Michael already. At one point, Michael was getting a little agitated, and I pointed out how the pitch of his voice rose when he was upset. The teacher had already noticed. Such a change from others who have worked with him and escalated the agitation because they couldn't recognize it until Michael became physical. I really have a great feeling about this school year!
Wednesday, August 26, 2009
Tuesday, August 25, 2009
The whole point of Lend 4 Health is that my tiny loan combines with your tiny loan, and a whole bunch of other tiny loans to add up to one big loan that can make a huge difference for a child with autism.
I know you might think that a 5 dollar loan can't make a difference, but trust me, it can! So, would you consider giving up a lunch out or a designer coffee and instead lend that little bit to a child waiting for treatment? Thank you!
Friday, August 21, 2009
Monday, August 17, 2009
We have always taken him to the same place for his haircuts, so he knows them and they know him. They know not to use clippers, and to be slow and quiet. They always let Michael sit on Steve's lap so he can hold him still and try to keep him calm.
This time was totally different. Michael sat in the chair by himself. He didn't scream, squirm, or cry. He actually talked with the stylist while she was cutting his hair!!!! Steve could barely keep his jaw off the floor, and even the stylists noticed the difference.
The only thing we've added since his last haircut is HANDLE. It is a wonderful set of activities that make all the sense in the world, once you think about it. The whole process is so gentle and easy, it's hard to believe it can make such a difference. Looking at my smiling child with a great haircut has reinforced my belief!
Wednesday, August 12, 2009
Sometimes I get so caught up in all the things that Michael can't do, I forget about all the wonderful things he CAN do, and does. Every day we get to see more of his personality, and it's awesome to see another parent getting to see parts of her daughter she thought she'd lost so many years ago.
So, go read, watch the video, and have a tissue ready!
What I find most ironic is the article above it, about Enhansa. I truly believe Michael has made such fantastic leaps this year because of Enhansa. So, having these two articles back to back is just perfect!
Monday, August 10, 2009
I wanted to find the source documents for the new number, and found this. When do you think the CDC will actually take these numbers seriously? When will someone become interested in .6 percent of children who had the diagnosis, but lost it? Isn't that something worth studying?
Sunday, August 9, 2009
It still fascinates me how Michael learns. He's been watching Sesame Street a lot lately. He has a binder full of episodes, and he picks and chooses which one he wants to watch. Then, he fast forwards until he gets to the part he wants, and just watches that part. For a while I thought he was just being a kid, but now I am realizing that he's learning from each of the parts he keeps playing.
The banana interview on Elmo's world led to him eating bananas, and banana bread, and even trying fried plantains. Another skit involved different kinds of bicyles. So, he decided that he wanted to ride his bike. It's strange to have a 7 year old watching sesame street, but if he's learning and happy, I'm very happy!
Saturday, August 8, 2009
Mom is recovering nicely from knee replacement surgery. I didn't realize how worried I was about her until I actually got to go visit. She is sounding stronger every day, and mostly back to herself.
One of the best things, is that I don't remember Michael laughing so much. He is understanding the jokes on tv, imitating some of the humor, and just enjoying things so much more. When he's happy, I'm happy.
And finally, I have another friend with a loan request up on Lend 4 Health. She's also going through a rough patch, so I wanted to post a link to their request. It's a loan, quick and easy to do, and really will make a difference!
Wednesday, August 5, 2009
To steal shamelessly from Jeanne's blog:
"So, here’s the bottom line: The kids on Lend4Health.org need your help. They need you to read their stories and chip-in $5 loans, or more if you’re feeling über generous. There are currently 4 open loans on Lend4Health, 4 loans for 5 kids. These kids need your help, your $5 loans!
For the past year plus, L4H has been facilitating loans for individuals on the autism spectrum to help their parents pay for costly treatments that are not covered by insurance. These loans are changing the lives of these children. The loans give the children a chance for a better life, a better quality of life, happiness, and better health.
You know how easy it is to loan a friend a few bucks for a coffee, for a beer, or for lunch right? Well, it’s just as easy to loan a few bucks to a child in need. Just visit Lend4Health.org. Read the stories of the kids with open loans. Choose one, two, or all of the kids and make your loans. It’s that easy.
I can tell you from my own personal experience, it feels damn good to help these kids. It feels good and right. It is good and right. It’s hard to believe a few dollars could change a person’s life; but it’s true. Your $5, plus my $5, plus her $5, plus their $5, plus a bunch of other $5 equals a better life for these kids.
Please visit Lend4Health.org TODAY and make your Cinco De Linco loans. Make sure you designate your loan as CDL, that way we can keep track of how many kids we are helping. You can do this on the PayPal page where you review your payment. Just under the description you’ll see “Add special instructions to merchant” – click there. A box will pop up where you can type in a message designating your contribution as a “Cinco De Linco Loan” – or “Happy Cinco De Linco Day!” – whatever you want, as long as you include the words, “Cinco De Linco.” "
Lend for Health
Tuesday, August 4, 2009
I wanted to do a post talking about how well eliminating allergic foods has worked for us, but then I came across this posting. It says everyting I want to say, but much more eloquently.
Saturday, August 1, 2009
I always heard that you get the endorphins after childbirth so you would bond with your child and be willing to have another. I'm just wondering if there are some autism endorphins that make all the work worthwhile, and all the pain melt away when he does something absolutely sweet, totally unprompted. How else do we go day after day after day?
He has also asked to make banana bread. That will be the adventure this morning. Wish us luck!
Also, please read this article at the Huffington Post. It is so powerful, and echoes so much of our journey with Michael. He's nowhere near recovered, but so much better than he was when we started!
Finally, today's giveaway is a greeting card maker. It isn't super fancy, but will get the job done. Check it out!
Tuesday, July 28, 2009
When he gets home from camp on Tuesday afternoons, there is just a little bit of time to change and get out the door for riding. On the way out this afternoon, he asked if he could bring this week's camp schedule in the car with him. When he got to the riding barn, he brought the schedule in with him so he could show it to the program director. He's never done any kind of show and tell before. It was 100% his idea, just wanting to share the joy of one activity with someone he loves from a totally different activity. It took me a long time to pick my jaw up off the floor.
I'm not quite sure what's going on, but the changes we are seeing this summer are huge. Better eye contact, using people's names, making connections between people, places and activities.. I just can't wait to see what he comes up with next!
Saturday, July 25, 2009
He is particpating in the activities this year, talking to them so much more, and generally fitting in with the rest of the camp. Last year, all he wanted to do was hang out in the hallway and open/close locker doors. I am so happy for little kid!
The very best part is that it really confirms for us that all the effort we are putting into biomedical interventions really is working. Talking with Michelle really reinforced that for me. She said that they expect to see a certain degree of growth in kids from summer to summer, but that Michael really exceeded that. The best news of the week!
Thursday, July 23, 2009
I'm not sure where we are getting all the wonderful positives from, but boy am I enjoying them! He is just a happy, relaxed kid this summer. So different from the bundle of anxiety and OCD we had last summer!
Now, if only we could get him to sleep in his own bed for the whole night!
Monday, July 20, 2009
We also got a small table and chairs so we can have picnics on the deck. Michael's been into picnics since they started having them at camp. It is so nice when he brings home GOOD things from camp!
I'm dead tired tonight. Have some work deadlines looming and not enough hours in the day. Have a good night!
Saturday, July 18, 2009
I am sure Age of Autism will post a list of attendees and the representatives they were there for. If you find your representative on the list, please call and thank them for their participation.
Sunday, July 12, 2009
Michael has been going to summer camp for 3 weeks now. He absolutely loves it. It’s a therapeutic day camp with a 4:1 camper to staff ratio. I couldn’t ask for a better camp, counselors, or activities. They go to a new place 3 days a week, and go swimming twice a week. Every day there is something for him to look forward to.
The change we have seen in Michael since school ended is remarkable. During the school year, he had pretty much stopped reading at home, and had terrible headaches 3 or more times a week. The first day of summer break, Michael started picking up books and reading again. He will even read out loud to me now. I am shocked and thrilled. The best thing though, is that he hasn’t been getting headaches. I think he was getting them from eye strain, trying to focus for such long periods of time at school. Without the stress and headaches, he is a happy, relaxed kid. And, I’m a happy, relaxed mom!
One of the other new things we have started this summer is HANDLE. It is a wonderful, intuitive program that really makes sense for us. Michael enjoys the activities, and he seems to be growing every day. I’ll have to write up a whole HANDLE post when I have more time. But, so far, it’s been a fantastic summer!
Tuesday, May 26, 2009
We've seen a lot of really great things lately. Michael has actually wanted to go back to therapeutic riding again, and is doing wonderfully. He didn't forget much, and is already back to standing in the stirrups and trotting. Even though he's a little afraid of being so high, he absolutely loves to trot. His instructor can't believe the change in him since last spring when we had to quit.
One of the reaons I haven't been around as much lately is that Steve and I have been trying to get a project off the ground. We started a web site called ASD Parent Exchange. No, our kids don't get to pick out new parents - it's a website devoted to helping parents start and grow their small businesses.
We kicked it off last month at a local autism resource fair. Even though a lot of people thought it was a great idea, we haven't gotten much interest at the web site. So, I guess I'm asking for your opinion. Would you mind taking a look at the site and letting me know if you think it's a worthwhile endeavor? We have so much on our plates I don't want to waste time, but if you think it's a great idea, we'll keep at it.
Saturday, May 16, 2009
Wednesday, May 13, 2009
For the last few weeks, Michael has been very touchy, emotional, aggressive. We've all been walking on eggshells to keep the peace. Getting him to school in the morning has been a major ordeal, complete with war injuries.
This morning, I had to get up early for a meeting, so I was downstairs getting ready around 6:30 or so. I didn't have to leave until 7:15. By the time my brother-in-law came to 'take over' at 7, Michael was dressed, had his morning capsulets, and was working on breakfast. Absolutely unheard of.
We got a note home from school today with lots of stars and a 'great morning' on it. Again, this is the child who just last week attacked the paraeducator because she had the audacity to try to get him to do some work. Part of today was 'testing' and he got a star for it. Truly, truly amazing.
Steve and I have spent the afternoon analyzing everything we've done this week. Could it be the couple times we've gotten Michael into the sauna and followed up with a bath? Could it be some of the HANDLE exercises we've started? Is the Enhansa working magic? Is he getting more sunlight now that it's spring? Is allergy hell finally waning?
I think that the answer is somewhere in our list of questions, and it's probably a combination of things. Whatever it is, I'm happy. Very, very happy.
Saturday, April 25, 2009
The only bad thing about the website is that it didn't list ingredients. So, I called the number on the contact us page and left a message saying that I was interested in allergy information. John Henry himself called me back within a few hours - on a Saturday! He explained that none of his products have wheat, dairy or soy. But, 3 products have herbs in them that could be related to wheat, so he recommended staying away from Papa Charlies, Texas Chicken Tickler, and another product that had herb in the name. He was so nice!
So, I am guessing that one Steve has a chance to peruse the list of products, we'll be getting some new rubs and marinades in. Just in time for summer grilling season!
Anyway, Michael has convergence insufficiency, which means that his eyes don't work well together, and it makes close work extremely difficult for him. No wonder he doesn't write well, like to read books anymore, and hates working on worksheets at school. So many problems that we thought were behavioral can be tied back to the CI. Now, I don't know how much is the vision problem and how much truly is behavioral, but it's a huge clue.
Once the county has a chance to review the report and suggested accommodations, we'll have to go back for yet another IEP meeting to discuss how to change the IEP to include the new information. It shouldn't be that big of a deal, but it's yet another meeting.
Anyway, we have seen a lot of good things this month. Michael's language is getting more fluent, he's making all sorts of wonderful connections and is just generally sweet and lovable. Of course he's had his moments, but when I look back on the month, the good ones stand out the most.
I have two other posts in mind for today, so I'll be making up for lost time! But, right now Michael and Steve are busy making fudge, so I have some time to write.
Wednesday, April 8, 2009
Sunday, April 5, 2009
For the past two weeks we’ve been asking Michael to do math with us whenever we get the hint that he is ‘on the edge’ of a meltdown. The amazing thing isn’t how well it works, but that Michael seems to understand that it works. There have been a few times when he was getting agitated that he came up to me and asked to play the math game. Or, if I slowed down, he asked for another problem. Why didn’t anyone ever tell us this before?
I’ve generally been able to tell the difference between willful acting out and a meltdown that was beyond his control. Now, I have another powerful tool. If he is willing to do math games, I know it’s a meltdown and he wants it to end as much as I do. If he refuses to even try to access the left brain, I know it’s willful behavior.
We’ve also been seeing some other fantastic behavior the last couple weeks. Mostly, we’ve seen an increase in flexibility and imagination. Michael has been enjoying going to the pool lately. On Friday, it was fairly empty, and he was daring enough to finally try some of the slides. He worked up his courage, and ended up going down all the small slides. (There are two mammoth slides that scare me!) The best part was how he explained it to me when they got home. He was so happy to go down the slide and have Steve catch him at the bottom.
My favorite flexibility part came on Saturday. He had been begging to go back to the pool, and had really good behavior, so we wanted to take him. The problem was that the open hours were very small, and conflicted with other errands that needed to be done. I asked him if it would be OK to skip the pool on Saturday, if he went on Monday instead. I was so shocked when he agreed! It’s so nice to see him understand a schedule change and just go with it. No fussing, no pouting, just talking about Monday. I guess we’re really lucky it’s spring break!
Sunday, March 29, 2009
Saturday, March 28, 2009
Michael has been battling systemic yeast his whole life. We’ve tried Yeast Aid, Diflucan, Ketokenazole, you name it. Each would help for a little while, and then the yeast would come back in force. I had researched the anti-candida diets, but just couldn’t do it. Michael is so skinny to start with; I just couldn’t take away any more carbs.
This calendar year we started off with the Diflucan and then switched to the Ketokenazole. Toward the end of the second prescription, the yeast was under control but I was terrified of what would happen when we stopped taking the medicine. Plus, I was afraid of what damage taking such strong antifungals could cause long term.
I had heard really good things about Enhansa, and was perfectly primed to try it. So, when we started, the yeast was mostly under control, but still there. We started Michael with one 75mg capsule in the morning for a week. We added one capsule a week until we are now at 2 in the morning and 2 at night, for a total dose of 600mg a day.
It’s like we have a whole new child. He was doing great when we started, but his social interaction is really taking off, and his OCD is much better. Right now he and Steve are playing Mario Kart on the wii. They are talking back and forth about the game, strategies for doing better, and unlocking levels. It’s so nice to hear a back and forth conversation that is related to what they are doing together! Add in that he’s sharing and taking turns, and I’m completely over the moon.
Spring is staring and Michael has been asking to go to the park. Last year, he would go on a lot of the equipment, but shied away from a lot of the more challenging tasks. This year, he is doing absolutely everything. He’s still a little intimidated by walking over a mesh bridge that is at least 20 feet off the ground, but he does it. He’s still a little more cautious that most of the other kids, but he’s catching up fast. It’s so wonderful to see.
Even better, he’s starting to interact with some of the younger kids. He generally feels comfortable with children about 2 years younger than him – they tend to be quieter and move a little slower. He’s played on the teeter-totter a few times, and shared some of the equipment that requires sharing. It’s so awesome to watch.
The very best result by far though is that Michael is a much happier child. He smiles more, and laughs a genuine laugh. I was so used to the hyper yeast laugh (other parents of yeasty kids know what I’m talking about) that it was a surprise to hear a genuine, happy laugh. I think he’s feeling better overall, and is less bothered by what’s left of the OCD.
I’m tempted to bump him up one more capsule to 750mg a day, but we haven’t decided yet. For now, we’re holding steady at 600 and seeing a happy, connected child. What more could I ask ?
I do have one footnote to add. Through all of this we’ve been seeing an absolute angel of a CranioSacral therapist. She has worked wonders with Michael both before and during our Enhansa experience. So, I can’t say for sure what is due entirely to the Enhansa, and what to the CranioSacral. I tend the think the two work synergistically, so it’s not a very big footnote.
Saturday, March 21, 2009
We have a busy day planned - Cranio Sacral Therapy this morning for Michael and then he wants to go to the park and run around. He's been playing Mario Party 8 on the wii lately, and has decided that some of the wood playground equipment at the park is really Donkey Kong's Treetop Temple. It's very cute, but he can get very impatient!
Some of you know that I've had a lot of distraction in my life lately, but that is has finally taped off some. So, I'm hoping that I'll have more time and energy to devote to Michael, but maybe some extra to update the blog site, and start a new and very exciting project. I'll fill you in as details become availble!
Thursday, March 19, 2009
I also wanted to point out that now is the perfect time of year to start the diet. Because Passover is approaching, the Kosher supermarkets are carrying many gluten and casein free foods. I don't understand why, but they are even carrying more soy free foods than normal. It's a great time to stock up! Today, Steve came home with a stash of chocolate chips, various flours, and even a chocolate bar. He said there were some delicious looking cakes that were gf/cf/sf, but way out of our budget. They stayed at the store.
So, if you are thinking about starting the diet, now is a great time to start. There are so many resources to help you, and I love talking about it. If you have any questions or need a cheerleader, just ask me, or leave a comment.
Sunday, March 15, 2009
Saturday, March 14, 2009
Thursday, March 12, 2009
When they finally arrived, Michael was so happy to see them. He ran to the door as soon as he heard the doorbell, and spent most of the evening jumping up and down in excitement. Michael normally does not like to perform, but he went through every word and phrase he'd been learning in Spanish, just to impress his grandparents. They were so thrilled.
On Wednesdays, Steve picks Michael up from school a little early and takes him to OT. I warned Michael yesterday morning that Grandpop would be going to OT with them. I didn't mention anything about him coming in to the school to sign him out. When he got close enough to the office that he could see who was there, he proudly told his teacher "That's my Grandpop!!". She was floored since Michael seldom shows excitement, much less tells her anything he cares about!
Every time I hear about how kids with autism aren't affectionate and don't form attachments, I think of Michael with my parents and Steve's mom. It's so wonderful to see him so engaged and happy. On one hand, I hate that my parents can only visit every so often, but on the other, it's awesome for them to see how much he grows in between visits!
Wednesday, March 4, 2009
To his credit, he took care of everything he needed to, and then wanted company to go back to bed. I never thought I would see him so independent when he's not feeling well. I never expected to be beaming with pride over a doubly upset tummy! It's very confusing to feel bad for him, and so proud at the same time.
Sunday, March 1, 2009
p.s. Steve is looking for grant money to determine if snow really is made of frozen water crystals!
Michael's been extra sweet and cuddly today. Steve thinks it's because I've spent so much time sleeping this past week that he hasn't gotten as much fun time with mommy. And, I enjoyed the extra cuddles, so that's definitely a good thing.
I've been working on teaching him spanish, and also got him the Hooken On Spanish computer program. It was really cool today - when the lesson he was working on showed the narrator painting with the various colors, he wanted to paint too. It's the first time in ages that he's wanted to paint. Now, he only put a dab of each color on the paper and wanted to say the spanish word for the color, but it's progress. And, we both had fun for a while.
Other that that, it's been a pretty uneventful weekend. Michael and I did go to the apothocary yesterday to pick some stuff up. He had great behavior for the whole trip, but then had a meltdown when it was time to come back in the house. I guess he was tired of being cooped up all week, too! I definitely want to take him with us on errands more often, just so he gets used to being out of the house and not on the way to school or therapy. It would be nice for him to get used to small outings being successful!
Wednesday, February 25, 2009
The first story is about a little publicized vaccine court ruling in FAVOR of parents of a child who developed ASD as a result of the MMR.
There is another link to a Huffington Post piece on the same topic.
And, there is a story where the CDC admits that ASD has an environmental component.
When is the world going to wake up and listen? How can we keep harming our kids? Please, go to Age of Autism and read from the top down. Today is a day you just can't afford to miss.
Tuesday, February 24, 2009
I asked Michael (who is feeling well enough to be sent on errands) to go upstairs and tell him his dinner is ready. Immediate answer "OK, I will" and off he went. He delivered the exact message I asked.
I've never seen such cooperation as we have the last few days. Could it be the fever? Is it that he's on his second week of enhansa? We haven't had any side effects from the enhansa (unless they've been covered up by the cold), but wow. I'm speechless, and it's not just my lack of a voice!
Saturday, February 21, 2009
I think we are in the presence of the happiest child on the planet – and once again it all started with the Wii. For Christmas, Michael’s Grandma gave him a copy of Wii Music. He immediately fell in love with the drums. Even though he still likes to just mess around with the menus and bop from activity to activity, he did spend a while taking the drum lessons and learning how to use some of the controls.
After a few weeks of ‘practice’ with the Wii, Michael decided it was time to beg for ‘real wii drums’. In other words, he wanted a real drum kit. An electronic one just wouldn’t do. I guess mostly because it didn’t look anything like the drums on the game.
Steve, being the wonderful father he is, sacrificed one of his guitars to trade for the drum kit. His Mom (the same Grandma that gave Michael the Wii music game) chipped in the difference. They hadn’t said anything to Michael about getting the drum kit, but when Steve was leaving with the guitar, Michael asked him where he was going. Steve told him he was going to the music store. Michael’s immediate answer was that ‘Daddy is going to the music store to get me a real Wii drum kit!”. I guess he was right!
When Steve got home and brought in the high hat cymbal, Michael was literally dancing around it in excitement. Even though he wanted the drum kit, I don’t think he was really expecting one to appear in his house. Michael was supposed to stay upstairs with his Uncle and Grandma while Steve put the whole kit together. He was so excited he just had to keep running downstairs to check on the progress. I don’t think he’s ever been so excited about something.
The best part of all was when he immediately was able to generalize the lessons from the video game to the real drum. He sat right down and knew how to work the foot pedals, and what each of the parts was called. It was so exciting to see! He didn’t quite get to bed on time last night and I’ll give you one guess as to what he wanted to do first thing this morning.
Sunday, February 8, 2009
Why can't I?
Why do you like reading?
Why are opposites bad? (They're not until you get them as an answer whenever he's in a bad mood)
I can't tell you how many nights I've worried about when he would start to ask these questions, and now he finally is. I am so excited!!!!!!
And, if your kid is into Chess, today's game giveaway is GrandMaster Chess. I'm not much of a chess player, but I know a lot of our kids are. And, free is good, right?
Thursday, February 5, 2009
Afterwards, Michael was in the family room playing his wii, and Steve was in the kitchen cleaning up after dinner. Michael was fairly absorbed in his game, but did hear Steve say "Ouch!" when he hit something. Michael immediately asked if he was OK. I was so shocked - situational awareness and empathy! What more could you ask for during Simms Kingdom?
Sunday, February 1, 2009
When it was dinner time, Michael sat at the table with the rest of us and ate nicely. I don’t try to force him to stay at the table all that often since it’s very hard for him. But, when we have company, I generally push a little harder. Last night, he didn’t fuss and run away all the time. It was very nice!
Another cool thing is that he’s been able to fall asleep in his room lately. It’s so nice to have the bed kid free! He still sneaks in during the early morning, but we can live with that – for now.
And, the last, best thing - he is eating so much better. Today we bought a fresh pineapple. He watched me clean it and then ate some. He was hesitant at first but eventually ate several pieces. I am a happy Mommy! Now, if I can just get him to gain a little weight!
Monday, January 26, 2009
Not So Sweet: Missing Mercury and High Fructose Corn Syrup
Much High Fructose Corn Syrup Contaminated With
Mercury, New Study Finds
Mercury from chlor-alkali plants: measured concentrations in food product sugar
We haven't had any products with HFCS since we started Michael on GFCF back in March, but it's still scary. I can't wait to see what their lobby comes back with next - commercials saying that mercury is actually good for you? Maybe they should team up with Offit!
Now, if you are reading this and thinking that mercury risk applies mostly to children, take a look at this article from PubMed.
Thursday, January 22, 2009
Tuesday, January 20, 2009
Michael has always done well keeping dry at night. However, he has had two 'accidents' in the last couple months. The first happened the first night we moved his L-Theanine to before bed. We made that change because it is supposed to help him sleep at night. Apparently, it helps him sleep way too soundly. Based on that, we moved it to after school so he could relax and sleep, but wake up if he needs to.
Yesterday, we got home late from his appt with Dr. Megson. He ended up having his 'after school' supplements after 6pm. We forgot about the L-Theanine issue. Last night we had another accident. So, there is definitely a one to one correlation.
I just wanted to write this out in case anyone else has any accident issues where L-Theanine might be the culprit. Overall, it's wonderful for him, but timing is essential!
Monday, January 19, 2009
Saturday morning Michael was playing with his Thomas recycling center. It has spaces for glass, plastic and can cargo. Also, we have been recycling at home as long as Michael can remember. With this background, my brother-in-law decided to show Michael a short video on how paper is made. Michael was so fascinated, he asked Dan to show him videos on glass and cans as well. It’s the first time he has used google to look something up, and paid attention!
Then, Saturday afternoon, Steve took Michael to the pool. Michael finally made the connection between the flag on our license plate and the flag flying on the pole. He spent the rest of the day talking about the US Flag and the Maryland flag. We looked them up on google images and printed him off 4x6 flags that he could carry around. I am planning to make a little photo album of state flags and throw in capitals too. Who knows, maybe he’ll learn some geography.
Michael has always ‘known’ that his grandparents live in Pennsylvania, and that his other Uncles are in Florida and Massachusetts. After the flag discussion, Michael wanted to talk about other states and look them up on the map. He looked all over the map, found states he knew, and asked lots of questions. I thought I was going to burst!
That was pretty much the weekend. Today, we took Michael for a follow-up appointment with Dr. Megson. It was a wonderful appointment, and she had a ton of great things for us to try. We always follow the low and slow rule, but it’s still a lot of stuff for the next few months. One of the things I’m most excited about is trying OSR. I’ve heard so much about it, but didn’t know if she would be willing to try it. Lucky for us, she had participated in a Defeat Autism Now! Think Tank over the weekend and was really excited by it, too. So, as soon as it comes in, we’ll be trying it.
The very best thing was last. After Michael’s appointment, he was in the waiting area while I checked out – playing with another boy!!! Appropriately!! They were playing in a little ball pit together, throwing and rolling balls, jumping, and laughing together. They even had a few short conversations about what they were doing. I was so happy, I didn’t want to leave. But, then the other boy left and it was time to go. I think I floated out of the building.
Friday, January 16, 2009
Monday, January 12, 2009
I hear so many stories of fathers who can’t cope and abandon their wives to ‘deal’ with their child. So many moms are isolated and alone, trying to navigate the system by themselves. Today, I want to thank all the Dads that stick around, actively participate in their child’s education, treatment plan, and life. I can’t express how grateful that I have a husband who supports Michael in everything – he is involved in every aspect of daily life, treatment decisions, and messy cleanups. Truth be told, he handles more of the messes than I do.
I can’t imagine going through this journey alone, or with someone who disagrees about the fundamentals of treatment. I would go nuts if I couldn’t bounce ideas off Steve, see if he is seeing the same things I am, etc. Between the two of us, we have a good handle on Michael’s progress, moods, future direction. There is so much more I want to say, but mostly, just Thank you, Steve, and Happy Anniversary!
Saturday, January 10, 2009
One of Michael's new favorite movies is Mary Poppins, where losing a job is a very minor part of the movie. It's just a few short scenes in the movie, but does make me sad every time we get to that part. On the other hand, Dick Van Dyke always makes me smile. After watching him play the ancient curator in Curious George, it was hysterical to see him playing a similar role all those years ago. (If you don't know what I'm talking about, rent both movies – they will definitely make you smile.)
Steve and I were talking about getting some other Dick Van Dyke movies for Michael to watch (Chitty Chitty Bang Bang is now on order) when we realized that in some ways, Jim Carrey is a modern day Dick Van Dyke - very funny and, more importantly, a very good person.
If you didn't see it posted, Jim Carrey has set up a $50 million trust for Jenny McCarthy and her son, Evan. They have been such a wonderful team making people realize that autism is treatable, and raising money for Generation Rescue. I love to hear good stories about them. Plus, it's really wonderful to see someone care that deeply for a woman and her son – especially when the child isn't his. After hearing so many stories of celebrities running amok, it's reassuring to see that there still are a few role models left.
I should be getting my mind back together soon, and hopefully will get back to a better posting schedule. In the mean time, have a great weekend!
Saturday, January 3, 2009
Thursday, January 1, 2009
I thought I would list off the best interventions of 2008 first:
GFCFSF Diet (Plus more) – This has to be the biggest win for us for the year. Once we figured out everything Michael was allergic to, and got everything eliminated, we saw a ton of gains. I always knew it was going to be a huge amount of work, and definitely not cheap, but absolutely worth the effort.
Adding Dr. Megson to our team – Another huge win. With Dr. Megson came mB12 and diflucan. Michael is a much happier child with the yeast under control, and the B12 has been fantastic.
Going to the Spring DAN! Conference – It was so inspiring to be in a huge room with so many other parents and practitioners fighting the same battles. It was hard to leave Michael and Steve for so long, but well worth it.
Continuing Auditory Integration Therapy – This wasn't new, but it is so important that I had to mention it. Every time Michael goes for a loop we always see something great.
And our biggest hopes for 2009:
CranioSacral Therapy – We actually started this at the end of 2008, but I am really hoping to see great results. The first couple sessions started off rocky as Michael transitioned, but the last few times have been fantastic.
FAR Infrared Sauna – Thanks to a loan from Michael's grandparents, we were able to get a sauna! We are still trying to make room for it, but hope to have it set up soon. I am so excited since I know that Michael has a lot of metals floating around that need to go. And sauna is such a gentle form of detox, I have high, high hopes. Thank you Mom!
Autism One – Steve and I both will be going to Autism One this year. Dan has volunteered to keep Michael, so it will be a learning vacation for us. If we can learn as much as we did at the DAN! Conference and the Pittsburgh Autism Expo, Michael will be one lucky little boy.
So, 2008 was a wonderful year but I am really looking forward to seeing everything we can accomplish in 2009. I wish you all a happy and healthy new year!!!!