Thursday, December 24, 2009
Guess I'd suggest checking prices before you buy. Many of these are great toys/games for our 2E kiddos who tend to have some sensory issues.
Click Here for the site.
One product they have on this site is available at most stores selling toys. It's a Koosh Ball. I've tried the generic Koosh balls and I have to say, they just aren't as good. Spend the extra money to get the real Koosh Ball. I can't explain it to you, but even I know why our 2E kids love these balls so much. It's as addictive as a Slinky (another great 2E toy).
The feel is great and it stimulates their hands. Even those who perceive pain in soft stimulation tend to do well with a Koosh Ball. It's a great way to relieve stress and helps with finger/hand dexterity. If you have a child who fidgets with their hands or needs something to do with their hands while trying to listen (especially at school), try a Koosh Ball. Get a small one that they can play with while listening. It's amazing the difference it will make for many kids.
Tuesday, November 10, 2009
I live an interesting life. Through the years, I've learned that people think I'm very organized. My family would be quick to say I'm not organized...most of the time.
I have a real Type A-B personality. Having Twice Exceptional children, I'm learning that I probably contribute to their quirkiness. I'm organized in the things that matter to me. Other areas that I don't care about, like desks, closets, etc., are a barren wasteland of mess and chaos.
I'm going to interject something here--one of the things I've learned about 2E kids is that they have a terrible time with organization. (And I thought it was just a poor example from their mother.) Since they often have a hard time classifying and grouping things the way 'normal' children do, they can't keep things organized. While we might put all the legos into one bin, all toy cars and trucks and motorcycles into another bin, etc.; our children may have a different way that works better for them. Maybe the legos (except not the red ones) go into one bin. The red ones go into a bin with the toy firetruck, the red toy cars and the red power ranger (red things), cars and trucks go in one bin, but motorcycles need a different bin because two wheeled vehicles don't go with four wheeled vehicles.
What an ah-ha moment for me. When I let my kids sort and classify according to what makes sense to them, it's easier for them to be organized. Just because I want to sort by size doesn't mean my system will work for them. And, for those who can't grasp their concept of organizing, take a photo after they sort their things into the way they want it. Print and tape the photo onto the bin. Even if I never figure out their system, the fact that they created it for their brains lets them control it.
Once I realized how important looking at things in a different light is, I realized why the following tip has worked so well in our home.
Several years ago, I read about an organizing idea that really helped me personally. The kids kept wearing the same 4-5 shirts over and over. They would pass up their favorite shirts and I couldn't figure out why. When I realized they only took the top shirt out of the drawer, they were only looking at two choices each day. They wouldn't lift one to look underneath it to find their favorite.
I decided to try the idea I read about and it's been so amazing we've never gone back. I had to learn to fold shirts slightly differently because the drawer is longer (front to back) than it is deep. Instead of folding shirts in half, I now fold them into thirds and put them in the dresser drawers like file folders.
Now, anyone who opens the drawer has a quick shot of all their shirts. You can see part of the design and it makes it fast and easy to find the exact shirt you are looking for. Want the Mickey Mouse shirt, try the 2nd row at the "bottom" of the drawer. Want your favorite shirt about playing video games, it's the blue one in the first row, middle.
It's made it a lot easier for my children to be independent and dress themselves while also giving them decision making opportunities. (Keeping in mind that Nathan, my strongest 2e, has a terrible time making decisions. He's afraid his choice will ruin the whole enchilada for everyone else. But since these are his clothes and he can only ruin his own day, he's learned to pick from the drawer on his own.) An added benefit is the shirts take up less room this way so I've been known to use the rest of the drawer to store shorts in the summer or pants in the winter.
What organizational ideas work for you? Since I only fool the rest of you into thinking I'm organized, I would love some additional ideas. Also, have you found organizational tips that work for your 2e? We're always looking for help in this area.
Friday, October 23, 2009
Wednesday, September 16, 2009
Thursday, August 27, 2009
Thursday, July 23, 2009
Wednesday, July 15, 2009
I'll keep you posted on what I find. And if you know of one, drop me an email or leave me a comment. I'd love to look at as many as I can. I'm finding the hardest part at the moment is finding a place to get a super-multi-vitamin.
Monday, July 6, 2009
Monday, June 15, 2009
Here is a portion of the article:
"Then there’s the indication that probiotics might even glean cognitive or mood benefits....They note that the interrelationship between the nervous systems of the gut and the brain have something to do with these positive effects. The research, led by A. Venket Rao of the University of Toronto, found that probiotics increased the “good” bacteria in the stomachs of those studied and also led to a better outlook and mood.†
Lead researcher Rao said, "We were quite excited with the fact that these were positive results and we felt that probiotics truly have a role to play in mood and behavior.”†
Their findings were published in the journal BMC Gut Pathogens.
† These statements have not been evaluated by the Food and Drug Administration. These products are not intended to diagnose, treat, cure or prevent any disease.
I know that many 2E kids have a 'leaky gut' and probiotics are supposed to help. It's also why many 2E kids are put on selenium. Selenium is another chemical for your brain that is created in the stomach/gut area.
Tuesday, June 9, 2009
We first saw the DAN Dr. in March. Before the trip, we did all the blood work that we could get done in advance. After the visit, we did additional blood tests along with urine tests and hair analysis. At the March visit, we started him on weekly allergy shots and added a few dietary supplements. This has already caused some fairly dramatic results in his countenance, demeanor and appetite.
Last week we went for the results of all the testing done after that March visit. This includes all the food panels and amino acid tests and the heavy metals testing. The results point over and over to the same vitamin/mineral deficiencies. The doctor want him on a pretty extensive vitamin treatment.
We're also supposed to add B12 shots that Sean & I will give him at home. Funny thing--in the office, I'm totally confidant and know I will be able to administer these shots at home. Sean is still confidant--but I realize the bulk of this will fall to me as the primary caretaker of the kids and the stay at home mom. So after staring at this needle for a week, I decided I just couldn't stick my baby when it's not life or death. If he needed insulin, I'd be all over this and an expert in mere days. But this is somewhat experimental...it's optional...it might help...it might not help. I couldn't bring myself to buy an orange to practice on. I'm already in charge of medicines and vitamins and therapy at home and therapy at places. I take him to get allergy shots and I don't want to have to go twice a week to the dr. for shots. I don't want to pay the extra money to have it done and I don't want to do it myself. In researching, I'm learning we can most likely get a pill/lozenge to put under the tongue where it dissolves. We'd have to do three a week instead of two shots. I think I'm a lot more ok with that.
Then came the food results. He wants us to totally eliminate a LOT of foods from his diet for the next 10-15 years. The list includes milk, wheat, gluten, strawberries, (coffee--no Starbucks for you, kiddo), yeast, beef and all shellfish plus a lot of other foods. Additionally, he wants us to go on a rotational diet. It's a 4 day diet where you can ONLY eat certain foods for the whole day. I think I took the report in stride. I knew the four day diet would not work in my home, but wanted to think it over before picking a fight with the doctor.
Then we hit the car and started discussing. Sean & I are in almost total disagreement with the doctor. I understand Nathan would feel better if the remaining toxins were purged from his body. But, I have to also think about his life. To remove all of that with absolutely no cheating--ever--means I'd really have to eliminate all birthday party invites, eating out would have to cease and the whole family would have to go on this diet. I don't know how else we could make it work. Every time I think of trying this diet out, I feel sick to my stomach. The doctor is saying it takes 10-15 years for the cells to stop seeing the 'allergen foods' as toxins/allergens. I really feel torn up over this.
After a few tears in the car, Sean made a statement that gives me a little more peace and clarity over the situation. He told me that if Nathan never got one iota better than he is at this exact moment, Sean could live with that. I've mulled that over...and I agree with Sean. I pray for more, but what we've seen is already so awesome! (I've added my favorite summer picture--so far--of Nathan. He's running through the sprinklers. This is the face I think of when I am trying to make these decisions.)
Here's where Robyn is currently at. We're hearing all kinds of 'miracles' from people doing the extensive vitamin therapy. The folks I know who have done these massive diet changes all have kids way higher on the spectrum. They see very dramatic results. I'm now going into my research mode. I have enough contacts to get some good 'mom' information from the been there/done that moms. I want to know their results and how their kids were before and after. I'm going to talk to our 2E consultant in Colorado and get some insight from her and all the patients she deals with. We're starting the vitamin regimen to a point. I'm not going gung ho just yet, but we're increasing the ones we know he needs most.
One of the hardest things for me (and I need to email and ask the dr. this question) is the part on this special diet where you chart every day what he eats and any 'reactions' to the food. Ummm---never knew he had ANY allergies because he shows no symptoms. He has such a high pain tolerance he doesn't really know when he hurts. So what am I looking for?!?! He's never had hives, breathing problems, poop issues or anything that indicates allergies when we give him these foods straight up. The only thing I guessed at was milk and possibly tomatoes (although tomatoes came back as an ok food).
So I think what I'm really asking for at this moment is some prayer support. First off, pray for Nathan and his total healing. I know God is bigger than the word Autism and is bigger than any other thing that is thrown at us (I keep humming the Veggie Tales Song, God is Bigger than the Boogie Man). I also need prayers for wisdom and clarity. If we're supposed to take the diet path, I want God to be exceedingly clear to me so that I know beyond the shadow of a doubt that it's HIS plan. I also ask that his allergy shots do cure all the things they are going after. I want his little body to function in the perfection that God designed for him. When you think of us, please send a little prayer up for us. These trips are physically and emotionally draining for me. I need God's wisdom and clarity because when I think about ignoring the diet, the voice in my head whispers, "good moms do EVERYTHING they can for their boys". I just have to say that for me, it's the straw that feels like it is the one to break the camel's back. I honestly don't know if I could really and truly do it--with no cheating, ever.
The same evening that I sent out the email above, I started receiving an outpouring of support and prayer. The first email was one I needed right at that moment. I was able to see more clearly was when my sweet friend Cheryl emailed me, "One time my ever-wise son-in-law told me that if something comes from God, it's not difficult, because God doesn't try to confuse us....You will know the right thing to do because you'll be at ease with it and the decision will bring you peace, not confusion." Now that makes a lot of sense to me.
Here's the main decision Sean & I made. We want a second opinion. I have a call into our 2E consultant to find out who the Bio-Med DAN Dr. she uses and recommends to her clients.
The other thing Sean & I discussed until midnight was the amount of vitamins we're being told to do. It is truly a massive list. And some of the vitamins are to treat one line item on a sub-test we took. While I see that the result is not right, I'm not convinced each line item needs a pill. Perhaps I want to try vitamin therapy on the big ones and then see down the road if that helps 'fix' these other numbers or not. I guess I want a 2nd opinion on that, too. We agree he needs a solid multi-vitamin formulated for maximum absorption. The B-complex vitamins came up in almost every test and sub test. I'm on-board with those. I will agree to Vit C and Calcium since he doesn't get milk and I have always believed that C isn't really a bad thing to get lots and lots of. However, when I started looking at the RDA vs. Amount To Give--I'm still a little concerned. The RDA for Nathan's age is 25 mg/day. An adult should get 90 mg/day. We're being told to ramp him up to 2000 mg/day. Do the math--it's 80 times the daily recommendation for his age and 22 times the suggested intake of an adult. I know lots of C is good---but is this too much of a good thing?? Beyond that, I'm not sure that I need to force him to take tons and tons of vitamins each day. (Photo represents what I feel like I'd have to shove down his throat each day. There's 22 vitamins/minerals/supplements on the list and several need 4-5 pills to get the amount high enough.)
So we're still searching and praying, but feeling a little better ourselves. As for the diet, I'm putting that on hold for research and a 2nd opinion. The other thing it comes back to is quality of life. I'm did begin contacting sources I have in the gluten-free and restricted diet community. I'm getting their input--but most of them did vitamins for a LONG time before going to dietary changes. I even had the chance to talk to a gal who uses our same DAN doctor. She's been going there for about three years and only started a gluten free diet 8-10 months ago. She refuses to do his rotation diet.
I want to ask more questions of our current doctor about symptoms from the food allergies. I don't see them now so what should I be seeing? If we can't find good documentation to support this diet for his low-level issues, it's a no-go. I'm with those of you who say to start cutting back on things without becoming the 4 day diet food nazi. If he was non-verbal, violent or ill all the time, I'd be all over this diet. But he's highly verbal, high functioning, not violent at all and is rarely sick....so what's the point again?
Thank you for your prayers and support. I'm feeling way more peaceful today! Sorry to create such a lengthy post. A lot goes on during a two hour consultation with a doctor and I'm trying to keep everyone up today. We're holding steady while we get information on a second opinion. That's what I really need. I need to know that another DAN doctor agrees that massive vitamins and diet is really key before I proceed.
I'll keep you posted.
Friday, May 29, 2009
I contacted the web owner over there and told her about this site. I didn't know if I could be added to their blog roll or not. It's that not fitting in thing again. Here's a blog for special needs and those of us with 2E kids know full well their special needs---but do I really belong on the blog roll next to kids with terminal illness, life threatening illness or even other kids with full blown autism? I guess I get that 'red-headed step-child' feeling a lot of the time...even in cyberspace.
However, the web owner emailed me back and told me clearly and firmly that specail needs are special needs. She featured me in the weekly edition of the Around the Blogosphere post. Check out the post and see what some of the other sites have to offer.
It's not confirmed, but I might be interviewed for a future post on their site. I'll let you know...
Tuesday, May 19, 2009
Now, I must say that we still believe that God can heal him instantly and I still pray for that, but if I'm being honest with myself (and with you), I've slowed down that particular prayer. I still pray for him to be healed or cured, but I feel that God has put a path before us where He works through the hands of men to help us reach our miracle. I want to make sure that at all times, He is still glorified in my words and actions. It's the path that was before us that led to this blog.
I felt nudges for a while leading me towards sharing our story in full and the struggles and challenges we were facing. I have found it to be exceedingly difficult to find parents of 2E children and while there's technical support out there, I couldn't find anyone who was speaking to my heart. There were days when I cried and cried and wondered where other moms were who were going through what I was going through. I couldn't find those moms in my city, I couldn't find those moms online---but oh, I know you are out there.
So in some searching for a domain for my family blog, I stumbled onto the name www.coolestchildren.com. I struggled for a while longer before taking a plunge and launching this very site. I spent some long periods in time praying and asking God for wisdom and direction and He led me here. To this blog, this spot in cyberspace where I could reach out. I came to the realization that even if only one person was helped by reading about our struggles, challenges and successes---it would be worth it. Beyond that, I decided it was really healing for me to share some of the struggles I've gone through for seven years and have generally shared with nobody beyond my husband. My family knew more of what our days were like, but it was too painful and too difficult to share the bulk of this 'stuff' with my closest friends. They didn't have the same struggles and who wants to sound like a whiner?
Now, at last, we are here. I'm still working to balance this blog and reconcile it to my own life. That's why posts are a little slow in coming right now. I've had to deal with these issues and get to a point where I can share and be open and transparent with you. I purposed in my heart to be real on this blog.
Most of all, I want to praise God for what He did with this site. I received several emails the first week from moms who 'got it'. These are the moms I was searching for all these years. They knew what it was like and several of them described my home life while telling me about their children. I pray that we continue to get the word out. I pray that we continue to support and share with each other. I want the world to know about these incredibly bright and brilliant people who are 2E.
Wednesday, May 13, 2009
This idea resonates with many people suffering from autism-spectrum disorders and their families. It also jibes with new thinking about the nature of autism called the “intense world” theory. As posited by Henry and Kamila Markram of the Swiss Federal Institute of Technology in Lausanne, suggests that the fundamental problem in autism-spectrum disorders is not a social deficiency, but rather an hypersensitivity to experience, which includes an overwhelming fear response.
“There are those who say autistic people don’t feel enough,” says Kamila Markram. “We’re saying exactly the opposite: They feel too much.” Virtually all people with ASD report various types of oversensitivity and intense fear. The Markrams argue that social difficulties of those with ASDs stem from trying to cope with a world where someone has turned the volume on all the senses and feelings up past 10. If hearing your parents’ voices while sitting in your crib felt like listening to Lou Reed’s Metal Machine Music on acid, you, too, might prefer to curl in a corner and rock.
“I think that it’s a stereotype or a misconception that folks on spectrum lack empathy,” he says. Schwarz notes that autism is not a unitary condition—“if you’ve seen one Aspie, you’ve seen one Aspie,” he says, using the colloquial term. But he adds, “I think most people with ASD feel emotional empathy and care about the welfare of others very deeply.”
The fact that autistic children tend to develop the first part of empathy—which is called “theory of mind”—later than other kids was established in a classic experiment. Children are asked to watch two puppets, Sally and Anne. Sally takes a marble and places it in a basket, then leaves the stage. While she’s gone, Anne takes the marble out and puts it in a box. The children are then asked: Where will Sally look first for her marble when she returns?
In terms of the caring aspect of empathy, a lively discussion that would seem to support the Markrams’ theory appeared on the Web site for people with ASD called WrongPlanet.net, after a mother wrote in to ask whether her empathetic but socially immature daughter could possibly have Asperger’s.
Said another, “I am clueless when it comes to reading subtle cues, but I am *very* empathic. I can walk into a room and feel what everyone is feeling, and I think this is actually quite common in AS/autism. The problem is that it all comes in faster than I can process it.”
“These children are really not unemotional, they do want to interact, it’s just difficult for them,” says Markram, “It’s quite sad because these are quite capable people but the world is just too intense, so they have to withdraw.”
Tuesday, May 5, 2009
It's a highly specialized audiological testing process that looks at how the person hears in the three levels of the brain. Nathan was determined to have a Central Auditory Processing Disorder (CAPD). We've suspected this for a long time, but she gave us confirmation. We've heard that many 2E kids hear better than others. She said it's they hear noises down to a level that most people can't. He heard tones down around 0 decibels. Some of these kids have a larger than normal range in the frequencies they hear. Nathan didn't necessarily hear more frequencies that a 'normal' person would, but he can her sounds down at 0 decibels which most people can't hear.
The Able Kids Foundation is the only place in the world where you can get an ear filter (if you qualify based on the audiological testing). Nathan qualifies and we've got his ear filters ordered. We didn't get the best mold of his ear and the first one didn't fit well, so we're taking more impressions and having another one created.
Here are some pictures of his ear filter. He could chose a variety of colors (including clear), but he wanted orange. No talking him into clear so it wouldn't be noticed. He wants to tell the kids about his super-powered hearing.
The filter helps filter out high frequency noises--background noises--out of the non-dominant ear. His right ear is dominant and left is not. When she tested him in a silent room, he got 100% accuracy. When Dr. Locke added the background noise of 25 silent students (that's clothes rustling and projector fan running), Nathan's score went down to 71%. When the filter was added to his left ear, he came back to about 94%. With FM Headphones and a microphone on her, he was back to 100%.
We now understand more of what we've been told all along about CAP disorders. He hears so well that background noises that we don't hear can overwhelm him. We also ordered custom earplugs for him to wear while doing 'silent work' such as reading, taking tests, working at his deck when listening is not required, etc. These will also be used for swim lessons to keep water out of his ear and to help make the indoor pool environment quieter. We've learned that many kids with CAPD don't like swimming because there is so much background noise, they are totally overwhelmed by sound.
Dr. Locke even provided recommendations to be added into Nathan's IEP. Since school is almost over, the teacher agreed to make classroom modifications without trying to add to the IEP. We'll add Dr. Locke's suggestions this fall when we renew Nathan's IEP.
I found it interesting where Nathan's challenges lie. When she split words and put high frequency sounds in one ear and low in the other, he couldn't identify any of the words. They even went over the entire list prior to the test so he had seen and heard each word at least once. They use complex words, but her simple example to us would be the word 'cat'. She puts the C-T sounds in one ear and the A sound in the other ear. Our ears should deliver the sounds at the same time into the brain and we know it's CAT. Nathan's ears don't deliver the sounds at the same time so he might hear AT and be asked to guess what that word is. Or perhaps background noise has him hearing A and guessing.
She suggested much of his classroom frustration might come from not hearing (and understanding) instructions. She said that when coming in from recess, a teacher might say, "Put your bag in the closet and sit down." His ears deliver that message as, "You're bad-in the closet and sit down." He's confused because he doesn't know if Nathan is bad or some other kid is bad. Should he sit in the closet? None of the other kids are--they are going to their desk. So he will try to sit at his desk and hope he doesn't get in more trouble...only to be told that he didn't follow instructions because he sat at his desk with his bag. And we often have wondered why he cries so much at school!
Since our filter won't arrive until after school is out for the year, I won't have definite data to back anything up until fall. We'll use the filter for Sunday School & Church and other instructional situations. We will use the earplugs as a constant friend. I also thought Dr. Locke did a nice job of explaining to Nathan some of the ways he is different while making him feel good about himself in his differences. (Here's his earplugs--he also picked this color combo. It's orange, yellow and green swirled together.)
We were pleased with what we received from them and would encourage others who have children with CAPD or suspected CAPD to look into this. It might not be right for you, but at least you are now informed that it's out there.
Thursday, April 23, 2009
days after an autism diagnosis."
Even if you are past your first 100 days post-diagnosis, I'd encourage you to take a look. I'm about halfway through reading this and there is great information for everyone.
The topics covered include:
- About Autism
- You, Your Family & Autism
- Getting Your Child Services
- Treating Autism
- Making it Happen
Also included is an action plan, forms and information on local help. If you haven't checked out the Autism Speaks website, it is a wealth of information.
Saturday, April 4, 2009
Wednesday, April 1, 2009
Friday, March 27, 2009
After it was over, they talked and Nathan agreed that it barely hurt at all and it was over really quickly. He no longer thinks it will be so bad to have a shot weekly. Sean tried to remind him about how we just had the first one a mere week ago at the DAN-doctor...but here's where our inexperience shows.
Nathan didn't remember getting a shot there. What?!? Cried and screamed for almost 5 minutes until we could hold him still long enough to get the shot in his arm. We talked about how brave he was for the allergy testing AND the shot the whole 3.5 hour ride home. Reminded him all week that he'd be getting one shot every week and how brave he was and how it hardly even hurt. I see how easy it is to forget...NOT!
Then we realized what he's trying to tell us in his own way. He's telling us that he doesn't remember much of that whole appointment. It's just too much for him to cope with, process and deal with that he's blanked out almost all of the 'bad stuff'. He is choosing to forget the bad and remember the good stuff. And I guess I'm glad for that, because he's still excited to go back in a couple months.
Maybe he's really teaching me a little something here. When I've had a rough experience, I tend to hold all the negative and dwell on it. I can bring up the anger and pain again and again---and sometimes I'll try to make the person who caused the pain pay for it, over and over again. Jesus said we should be like little children for His kingdom belongs to such as these. That's my life lesson for today. Remember the good stuff and block out the bad. I might not be prepared, but my guess is I'd be more loving. I know Nathan's got a lot of love to give. I know he lives every minute of life to the fullest. Yep, I guess I need to be more like my own little child.
Thursday, March 26, 2009
She found this article here, but I copied it below.
Chronic pain linked to low vitamin D
ROCHESTER, Minn. (UPI) -- U.S. researchers found a correlation between inadequate vitamin D levels and the amount of narcotic medication taken by patients who have chronic pain.
Researchers at the Mayo Clinic in Rochester, Minn., found chronic pain patients who required narcotic pain medication, and who also had inadequate levels of vitamin D, were taking much higher doses of pain medication -- nearly twice as much -- as those who had adequate levels.
The study, published in the journal Pain Medicine, also found the patients with the lower levels of vitamin D self-reported worse physical functioning and worse overall health perception.
"This is an important finding as we continue to investigate the causes of chronic pain," lead author Dr. Michael Turner said in a statement. "Vitamin D is known to promote both bone and muscle strength. Conversely, deficiency is an under-recognized source of diffuse pain and impaired neuromuscular functioning. By recognizing it, physicians can significantly improve their patients' pain, function and quality of life."
The researchers studied 267 chronic pain patients admitted to the Mayo Comprehensive Pain Rehabilitation Center from February-December 2006. Vitamin D levels at the time of admission were compared to other parameters such as the amount and duration of narcotic pain medication usage; self-reported levels of pain, emotional distress, physical functioning and health perception; and demographic information such as gender, age, diagnosis and body mass index.
Copyright 2009 by United Press International
Tuesday, March 24, 2009
- Sticker with the alligator who says, "I had lab work done today."
- Bandage (We had to get a new one from the lab before we left as the one they gave us originally wasn't sticking any longer. He had to get another one to show his poke.)
- Wristband for the blood draw. (They offered to just let him put the sticker on his shirt, but he wanted the wristband to wear and show off.)
- Not easy to spot, but there's a belly full of yummy breakfast.
I forgot to take a picture of Nathan's feast. He chose scrambled eggs, bacon, a doughnut and a fruit punch slushie.
He figured out during breakfast that he could sing his breakfast to the Kindermusik song his sister sang last semester. She sang, "Milk & cookies, milk & cookies, yummy in my tummy..." Nathan sang, "Eggs & bacon, eggs & bacon, yummy in my tummy. Doughnuts and slushies, doughnuts and slushies, yummy in my tummy."
Friday, March 20, 2009
There were DAN-certified people closer, but it was recommended to us that for our needs, we see a person who was a full MD as well as DAN-certified. We need someone who will use medical testing combined with DAN-testing to give us a full picture.
Prior to going to the doctor, we were able to get a good chunk of the blood work done here at home. Our primary care doctor is working with us and ordered the tests so we could get them done here in-network.
Some of you asked what we had done. We did:
- Vitamin D
- Vitamin A
- Lipid Panel
- ASO titer
- DNaseB titer
- Thyroid (free T3, free T4, TSH, resverse T3, anti TG ab, anti TPO ab)
We brought home the following kits and will have these done prior to our next appointment. Some of these have to be done fasting and you need the kits because they aren't traditional western medicine.
- Amino Acids (both plasma & urine)
- Organic Acid
- Food Panel
- Essential & Metabolic Fatty Acid
- Hair Analysis
When going over Nathan's history, we mentioned the ear infections and two sets of tubes. He immediately said, "Oh, so Nathan's got a milk allergy?" We said no, we think he's a little lactose intolerant because he tends to avoid milk products. The doctor told us, "No--the number one cause of ear infections in infants is a milk allergy. He's allergic to milk." Then when we did the scratch tests for allergies, he was allergic to milk. If I would have known that, we could have done something about it 7 years ago (or 11 if you think about his brother having two sets of tubes).
Out of the testing that had been done, he discovered a fairly significant deficiency in Vitamin D, a little deficiency in Vitamin A, he's not producing enough Selenium and his cholesterol is too low and he prescribed a type of cholesterol.
To get enough Vit. A & D, he told us to give Nathan Cod Liver Oil daily. This would be from fall through spring each year. He thinks it will help with the depression-type of symptoms and helps other kids who are aggressive to calm them. Especially since Nathan isn't drinking milk, he doesn't get enough A & D when it's winter and he's indoors. We will get a specific type of selenium capsules to give him as well.
He did allergy testing and found Nathan to be allergic to most molds, most household pets (Mom said, "Yes--NO DOGS!!"), most seasonal allergen plants and lots of trees. He started Nathan on allergy shots and we'll get those weekly for now. The goal is to build up Nathan's immunity to the allergens instead of treating the symptoms. Their philosophy is to treat the cause, not the symptoms.
We discovered prior to doing the allergy testing that Nathan's sinus and nasal passages are about 50% blocked and one ear is 'plugged' and one ear has fluid (not infected) in it. We thought he was doing so great and 'normal.' The nurse was so concerned about how bad he was doing and we thought he was great. She thinks in the next 4-6 months of allergy shots, we will start to see a new child in his breathing and energy.
We're taking sort of a shotgun approach to everything we've been learning. We're working on everything at once and trying to maximize the benefits to Nathan. He was scared of the skin tests because the last time we did it (at a local allergy clinic), they did individual scratches. At this office, they have a rack of plastic scratchers that do 8 at one time. He only had to have 6 push scratches since she did two racks at a time (one in each hand). It was over so much faster and he was so brave in his fear. Then to give him an allergy shot was hard. He did so well and we're thankful to their office! Since they work with so many autistic children, they were good at waiting and helping us explain and calm Nathan down.
Nathan got to pick dinner. He was thinking McDonald's (again), but when we mentioned Cracker Barrel, he took us up on that. He & dad got to play checkers without having to take turns with a brother, and he got to pick anything he wanted from the menu. (Biscuits and eggs with some of dad's pancakes.) Mom chose chicken & dumplings (what else?). We agreed that when we go back in two months, we'll go a little earlier so we can stop at the McD this time and play a while. We even wrote down the exit so we're prepared.
More will be coming for us, but we got a running start at it. I'll try to post this weekend about some of the bio-medical findings regarding autism.
Monday, March 16, 2009
When we took him in to check the prescription before getting glasses, the optometrist discovered he didn't really need glasses. He needed vision therapy. In his case, he has Convergence Insufficiency. When he looks at the tip of a pen held out in front of him and brings the pen towards his nose, we should see his eyes cross. She expected him to get within an inch of his nose. About 3-4 inches away, his eyes suddenly POP to looking straight forward instead of continuing to cross. Each repeated attempt finds the pen farther away. It's a muscle problem and we need to get the muscles improved. Our optometrist informed us that this is one of the best eye problems to have since it is curable. We don't correct the problem with glasses, we cure it with vision therapy.
If you find out your child needs vision therapy, we found http://www.covd.org/ has great information and a provider list.
Here's a list of signs and symptoms found on the website:
Physical signs or symptoms
- Frequent headaches or eye strain
- Blurring of distance or near vision, particularly after reading or other close work
- Avoidance of close work or other visually demanding tasks
- Poor judgment of depth
- Turning of an eye in or out, up or down
- Tendency to cover or close one eye, or favor the vision in one eye
- Double vision
- Poor hand-eye coordination
- Difficulty following a moving target (my addition: like a pen tip)
- Dizziness or motion sickness
- Poor reading comprehension
- Difficulty copying from one place to another
- Loss of place, repetition, and/or omission of words while reading
- Difficulty changing focus from distance to near and back
- Poor posture when reading or writing
- Poor handwriting
- Can respond orally but can't get the same information down on paper
- Letter and word reversals
- Difficulty judging sizes and shapes
A couple notes that we watched for after getting the initial diagnosis. We watched his eyes as he worked on a worksheet. He kept moving in his chair or getting closer/farther from the paper as he worked. He was adjusting his focal point to make up for the lack of muscular development in his eyes.
We take the oldest one in two weeks to confirm whether he needs therapy or not. I'll keep you posted.
Friday, March 13, 2009
Linda (co-founder) writes, "After raising two 2e children and struggling to find information and get help, my husband and I created a publication for parents and teachers to help them understand twice exceptionality, 2e: Twice-Exceptional Newsletter. We've been publishing for 5 years and also have a website and send out a free monthly email briefing on 2e topics. We're working to spread the word, and little by little the awareness of who these children are and what they need to thrive is growing."
To learn more about this publication and the subscription costs, visit their website at http://www.2enewsletter.com/
I've read the samples online and a teacher at school has given me articles that apply to us from her subscription. Their newsletter has experts writing articles for them and great technical information. A lot of the information is great to help educate teachers regarding a 2E child and the unique needs they bring to the classroom.
Wednesday, March 11, 2009
Thursday, March 5, 2009
- Gifted: High Abstract Reasoning
- Learning Disability: There's many ways to define a learning disability--IQ/Achievement Discrepency (Autism falls here), Speech & Language, Mental Health Disorders, Behavioral & Developmental Disabilities, Other Health Imapairments (ADD falls here)
- Twice Exceptional: Gifted and Learning Disabled Child
In a nutshell, a 2E child is one who is gifted and has a learning disability.
Wednesday, March 4, 2009
Nathan's story goes back to infancy when he had repeated ear infections and had to have tubes around the age of 15 months. Those tubes became clogged and had to be replaced about 15-18 months later. We now know that fluid on the ear can cause hearing problems and that antibiotics thicken the fluid of the ear making hearing a little more difficult while on antibiotics. He always seemed speech delayed, but every time we had him tested, he came back as slightly behind, but not enough to qualify for services.
Our preschool has a fantastic program for kids like Nathan who are 2 1/2 in the fall. They have "Toddler Friday" where the kids go to preschool each Friday. It gets them into the school routine and it made Nathan feel 'big' like his older brother who was already in school. At preschool, I noticed right away that he never played with the kids, it was next to the kids. Parallel play is still considered OK at that age, but he was the only one. It bothered me---a lot.
The following year in a normal two day a week class for 3 year olds, we still had parallel play. He only interacted with the kids if their play crossed into his. We always joked that Nathan's world is this big circle and the real world only intersects a small corner of it. (See the diagram at the left.) If you happen to catch Nathan while he's in the 'real world' corner, he's a lot of fun. Otherwise, he has a great time on his own.
By the time he went to preschool three days a week at age 4, Sean & I knew there was a problem. We knew that if you look at a room full of kids, you can always spot that one kid who is just a little 'different' or a little 'off' of the other kids. It was OUR kid!!! He was having terrible transition issues at school and home. He cried everyday when I left him, he cried when I picked him up, he cried over things during school that we didn't understand. He would wake up in the mornings before anyone else in the house was up. He'd sit on the couch in the dark by himself and cry. I'd rush to him to see what was wrong and he'd say, "Nobody likes me." I couldn't even convince him that I liked him--and I'm his mother. I felt very hopeless and as much as I'd reassure him of every person who loved him, we'd have the same thing happening week after week.
I called our doctor and took him in. I didn't know what else to do. I knew there was a problem and I had nobody else to turn to. The preschool agreed there was a problem, but they hadn't seen it before either. They loved him to pieces and he was so bright that we couldn't understand what the issue was.
God bless our doctor who listened to a heartbroken mother and immediately sent us to a pediatrician in town who specializes in diagnosing Autism and Autism Spectrum Disorders. We thought Nathan might have Asperger's Syndrome, but he does not. He was diagnosed with Semantic Pragmatic Language Disorder (SPD) which is a British diagnosis that is not accepted in the USA by all psychologists. The American Psychiatric Assoc. does not recognize it because it was discovered by the British. So it puts Nathan on the Autism Spectrum--but because the APA doesn't recognize it, the school district wouldn't accept it and he did not qualify as Autistic. Again--no services.
We took her recommendation for counseling and saw a Psychologist for almost a year. We'd take him with us after preschool and go see Dr. Karen. She mostly worked with Sean & I on ideas to help Nathan out. She had some great insight into his need for structure and warnings. We started practicing making him leave a puzzle before he was finished putting it together so he could practice interruption at home. We did lots of role-playing. We would pretend what we would say if our teacher says this--we say this.
In the course of all of this, we had our third child and decided to move to a larger home before Nathan went to Kindergarten. We knew that once he started at a school, we would not be able to move him to another school until 2nd or 3rd grade. We needed space sooner than that so we moved within our district to a larger home and different schools. Dr. Karen helped us transition him in the move as well. We waited 60 days to close on our new house and every day during that time, we drove by the new house at least once a day. Due to some findings on the inspection, we had to have some work done before we moved into the house. Every time we had workers in, Nathan & I were there looking at our new room and talking about our new house. By the time we were two weeks out from closing, he started asking why the bank was being mean and not giving us a key to our house. The move was a fairly smooth transition.
We let him go through Kindergarten without making much ruckus. I went up the end of the school year and met with the principal. I showed her all our documentation and she explained he didn't qualify for services. I knew that but we talked about how I felt the need to request a teacher for him--but I didn't know who to request! I didn't know any of the teachers names, let alone how they ran a classroom. We talked about what characteristics Nathan needed in a teacher and she made lots of notes. God bless her, too! She came through for us giving us a tenured teacher who has taught Kindergarten for many years. Our Mrs. P. wasn't flustered by Nathan and his outbursts and crying fits. She and the para Mrs. S. took Nathan under their wings and over time found a system that helped calm him down. In fact, to this day, if Nathan is extra upset--Mrs. S. will come to his room and take him on a walk around the building. They just walk around and talk about nothing in particular until he feels calm enough to go back to his room.
This year saw him get another structured and tenured teacher. Mrs. L. has been teaching for 14 years and has had great success with other truly Autistic children. We went in before school started and met with her. We talked about Nathan, his issues and what we've found that does and does not work. She had some great ideas as well and off we went. He likes Mrs. L. and school, but this year the work is a little more involved. While it's not too much for him because he's a very gifted young man--the pressure of the higher expectations started taking their toll on Nathan. His gifted teacher and classroom teacher got together with us and helped us start the process of trying to get him classified as Autistic.
It's amazing how a different school and a different school psychologist can make all the difference for a little boy! Our school psychologist at the new school sat down at the first meeting and said, "I've looked through Nathan's very fat folder. It seems you've had concerns about him since he was about 18 months old. I saw the SPD diagnosis and while that doesn't qualify in America as Autism, I just need to do some additional testing and write a letter explaining that SPD would be called an Autism Spectrum Disorder in the US. If his test results are consistent with an Autism Spectrum Disorder, we should have no problem classifying him as Autistic."
That's it....tests and a letter? Why couldn't the psychologist at the last school do that for us?!?! So we had him classified at school as Autistic. He received Speech and Special Ed. for the Autism and Gifted Services because he's gifted. Our district is looking into a 2E classification, but it's not yet in place.
We learned about the 2E classification last year at a parent seminar given by our local gifted association. We used that information as part of our basis for getting Nathan classified as Autistic by the district. Our journey continues on...but we're starting to find the resources we need to help us out. I haven't had success finding other parents of 2E kids on the web. Sean & I spent so very long floundering and trying to do the best we could for our kids. I'm creating this blog believing that if I can help one parent and one child find the help they need, I will be successful. I've prayed long and hard about putting our story on the web...but I know the Lord is directing me to do this. Somebody out there needs me and to hear my story...just as much as I need to hear their story, too.
I hope and pray we can create an online community for each other. A sounding board and a place for idea exchange. Let's talk about what is working and what isn't. Let's help each other wade through the 2E experience together. Let's lift each other up. Let's do it for each other...and more importantly, let's do it for our kids.
I can't wait to hear your story. Please email me at coolestmommy (at) gmail (dot) com or post a comment or subscribe and keep up to date with what is going on here.