Dusting Off and Getting Back Up...



Right before we left for the TACA conference I got an email from Nate's teacher.  It felt like I was being dealt a huge blow.  And I can't really explain why.  In her email, she said that she was trying to "plan" for next year.  And that she felt strongly that Nate would benefit greatly from, wait for it, "additional adult support."  In case you've missed it, I have been all but begging for this for Jack this entire year (and yes, we have it).  And now it's being handed to me on a silver platter for Nate.  1:1 support in the classroom.  So why does it feel so unbelievably crappy?  I have been struggling with that for the past several days.  I think I was just hoping that Nate could get through this program without needing extra help (any more than he's already getting).  Frankly, I didn't even know that extra help in a classroom that is already special education by definition was an option.  I thought that he was getting exactly what he needed.  And now I am hearing that it's still not enough for him.  It could be worse, he's not being transferred to the "special school".  Not yet.  They apparently still think that he can succeed in his current setting.  So that's good.  But as with any discouraging news related to the boys, it feels like a knife in my heart.  Of course I want to hear that he's making great strides and blowing his teachers away.  So I need to bring my expectations and hopes down a notch....for now.  And I need to refocus on what I can do. Time to pick myself back up and get moving.

This past week was excellent in terms of gaining new knowledge.  As I mentioned in my last post, I feel pretty overwhelmed.  I feel that familiar panic that comes on whenever I realize how much I want to do in my efforts to help the boys.  And I want to do it all RIGHT NOW.  I know this is of course impossible.  Step by step. 

One of the first things we need to do is take our gluten and dairy free living a few steps further.  Eating crappy gluten and dairy free junk food does not help the kids much more than eating regular stuff.  Especially with Nate's yeast issues.  As Dr. Usman said at the conference, we need to go "caveman".  What does this mean?  Think meat, protein, veggies, fruits. Fewer pretzels, cookies, sweets, snack food in general.  Carbs are carbs, gluten free or not, and yeast feeds on sugar.  That was the premise of Nate's previous regimen, the specific carbohydrate diet.  I'm not planning on taking it back to that level.  Just fine tuning some.

Another huge issue is our food source.  We need to be very careful about this- these kids are clearly unable to clear toxins in the same way as the "typical" kid.  Things just affect them more.  Meats and eggs need to be specifically growth hormone and antibiotic free.  I mean, I am supposed to give Nate nystatin when he is on antibiotics right?  So if he is getting meat or chicken that has been given antibiotics, he basically should just be on nystatin forever?  We have found a dairy, courtesy of a mommy friend, that delivers fresh meat, eggs, chicken, dairy, yogurt, butter, etc as often as weekly for a less than $5 charge.  I "applied" for service today, we just have to ensure that we are on one of their routes.  Also, plan on seeing me at the farmer's markets this summer.  Even organic fruit that is stored in plastic can be leaching chemicals from the plastic.

Which brings me to my next point.  We are going to eliminate plastic as much as possible.  And this is for selfish reasons, not because I am protecting the environment, although that's a nice added bonus.  It's because of all of the chemicals that can leach into the nice fresh food we are providing.  Yes, most things are bpa free now, but there are other chemicals in plastic, plenty of things to avoid.  Why go to all of the trouble of going organic if we just pop this healthy food in plastic?  Doesn't that defeat the purpose?

I never thought I would take this type of intervention so far.  I scoffed at all of the "clean living" stuff, the green containers, the safe cleaners, etc.  But Dr. Usman said something that just keeps echoing in my head.  I think it will have the same effect on my readers.  She said "There is no such thing as a genetic epidemic."

It would take hundreds of years for the incidence of autism to increase as greatly as it has in the U.S. in the past 20.  Here are a few articles related to this:

http://www.autismcharlotte.com/reports/

http://www.foxnews.com/health/2013/02/05/can-autism-be-prevented/

http://americannutritionassociation.org/newsletter/dr-usman-autism-0

So once again I am confronted with that whole darned concept of....why the hell not?  How much more effort will it take for us to make these changes?  And as always, one of my biggest considerations is, will this hurt them?  Absolutely not.  It will help them, and it will help me and my husband. 

Some people think that all of these theories are ridiculous.  I beg of them, please give me some other explanation for what is going on with my boys.  Please tell me what YOU think is going on.  That's right.  No one seems to have a logical explanation for the explosion in numbers.  And I used to think "oh it was just under diagnosed before". Bull pucky.  If someone had seen Nate 15 years ago, they would NOT have looked at him and thought, oh he's just a late talker.  He would have been diagnosed.  No doubt in my mind.  It is clear to me that the incidence of autism truly is increasing at the rate that's being reported.   So bye bye antibiotic fed meat, plastic, carbs.  If you are on the list of possibilities, you are not welcome here any more!

The Value of "Special Needs" Friends

Since the boys' diagnoses we have been very lucky in that the people who were really our friends before this have been supportive and we have been able to keep in touch.  My mommy friendships remain intact for the most part.   I can't say that Jack is really "friends" with his playgroup buddies of the past.  He does have a difficult time connecting with kids in the typical way.  He struggles with it, and it can be hard to watch, as I have mentioned in the past.  I have one friend from back in nursing school who makes an effort to have her daughter play with special needs kids- she wants her daughter to be an accepting person.  Granted, my friend is just an extraordinary person herself, but I appreciate her so so much.  She even came to the roar for autism event for Kennedy Krieger with us last year, heck, she suggested it. 

That being said, there is just something about having another special needs family to interact with.  An immediate feeling of acceptance.  There's no need to explain any of your kids' behaviors.  Even if they are different from the other child's, the parents get it.  I also enjoy TACA meetings for this reason- we talk about poop, poop smearing, spitting, biting, hitting, like we're talking about legos.  And I'm down with that. 

We are fortunate to have connected with the family of one of Nate's ABA classmates.  I think the mommies benefit from this more than anyone else, but I know that it does all of us a world of good to feel just a little less alone in this situation.  We went to a birthday party for this family over the weekend- just me and Jack since Nate was sick.  First of all, Jack was enthralled because we were on a military base- he came home and told John he saw soooo many planes all over the place.  Yeah, we didn't see any, but we all know where Jack's mind goes.  He was starstruck at the inspection station.  Anyway, I am always nervous to take Jack to a party- but a bit less so for this one.  I have always appreciated that some of our friends try to accomodate the boys' diets, as I am perfectly willing to bring our own little cooler, and have done so many times at this point.  I didn't need to do this for this party- but on top of that this mom BAKED gluten free cupcakes.  I don't do that!!!!  I go to a bakery. 

And here are the huge signs that your host knows what's up.  You get a message that you can bring your kids whenever (ie, early) in case they need some time to adjust to their surroundings.  No one bats an eye when, because he is excited, your kid starts flapping his arms.  The hosts ask if Jack will be ok with it before they blow up a big bounce house in the living room (he was thrilled).  Oh and here's a biggie, the host mom smiles like it's endearing when your kid screams because she uses the flash on her camera and tells her to stop that.  And you know that she is truly not annoyed.  Jack felt comfortable there- I could tell.  Who knows, maybe he was reacting to my lack of tension.  He played with other kids, he interacted with the adults (and demonstrated his vast knowledge of WWII aircraft), he ate an astounding number of rice krispie treats.  He did a pretty good job over all- no meltdowns, always a plus.  So this is my thank you to that family- for being so thoughtful and considerate.  It really did make a difference and Jack had a great time.  And what a sweet and polite birthday girl too!

What to Say and When to Say It

Something I have struggled with for a long time is the decision of when I should let someone know that my children have autism.  There are many circumstances where I have to inform people- obviously school, babysitters, etc are a no-brainer.  I am talking about when we are out in public- when the boys are overstimulated and having a meltdown, or when their behaviors are just, well, unusual.  I don't know if I need to explain, or if I should just let it ride.  While we were on vacation, I let it ride the entire time.  We didn't encounter that many people anyway- mainly at the Wright Brother's Museum, and I'm not gonna lie, we did get some dirty looks there.  Jack was not naughty- just extremely exuberant, and very effusive when it came to talking about airplanes- of all types.  I guess it's frowned upon when your child decides to demonstrate said knowledge during a formal presentation to a group of all adults on Christmas Eve.  Oh...well.  I knew I would never see those people again, so I can live with that. 

It's acquaintances, family members of close friends, neighbors, that I have a tough time with.  I don't want to walk around advertising to everyone I meet, however, I don't want people to think my kids are just naughty or out of control.  This is apparently a common problem, otherwise, these would not exist:
http://www.tacanow.org/store/My-Child-Has-Autism-Cards-100/

I was presented with one of these cards a little over a year ago by the receptionist at the boys' OT.  She has a daughter on the spectrum as well.  And I was bringing both boys in by myself every Saturday for their appointments- between the transitions of getting out of the car, taking off shoes and jackets, detaching from toys, and then leaving mom, there was a meltdown at almost every session.  I mean multiply those transitions x 2 and it's pretty much inevitable if your child has autism.  There are many parents whose kids are seen at the OT who are familiar with autism, but some are not.  And I was getting looks.  I get looks a lot.  I was offended by the card at the time- as though the receptionist was saying the boys were being "bad".  I get it now.  Just had to come around a bit.  I have never actually given one of these cards out, but actually think it would be fun to hand it to someone who is giving me the evil eye on the playground when my son won't stop spinning the steering wheel because he is obsessed with spinning things, and freaks out when another child tries to join in.  My kid can share!  Just don't touch something in his area of interest! Ha

Actually I take that back.  We went to a close friend's daughter's birthday party yesterday- at a bounce place.  After about 20 minutes at the party, my kids were parked at opposite ends of the facility- one continuously spinning the propellor on an aircraft carrier in the toy area, and the other chowing down on potato chips while daddy watched the football game.  Neither of them had much interest in socializing- although Jack did make sure to find the birthday girl and wish her a happy birthday.  Also, Jack handed off the aircraft carrier to another little boy after awhile and moved on to some robots- score one for Jack!  At these events, I bring a cooler- I have their gluten/dairy free pizza and cupcakes.  I am glad they are available, so we can go to these events relatively pain free.  But people are always curious.  I wonder if they think it's odd that I give Jack at least 3 opportunities to leave the area when the birthday song is coming up- he's caused distraction from the birthday kid many a time when he screamed at the clapping that is inevitable after the singing.  Yesterday I was so proud of him- he opted to cover his ears b/c he wanted to be there for his buddy.  Should I explain these alterations in "procedure" to the people sitting next to us?  I chose not to.  Then Nathan saw the balloons tied to the backs of all the chairs and wanted them- like really wanted them.  Nate doesn't often want something, so I handed him an orange balloon- feeling like a nice mommy for untying one when it wasn't time yet.  He looked at me like I had three heads and proceeded to cry and then try to rip a BLUE balloon off of the chair next to him.  I switched them- guess I know his color preferences now for the first time ever.  After people started getting up from the party table, he proceeded to walk around the chairs and "free" all of the blue balloons.  He wanted to hold the string for awhile, but then he wanted to watch the balloon float to the ceiling.  One time he let go and my friend grabbed the string so he wouldn't "lose" his balloon- a small meltdown ensued.  Then my friend's cousin, who is tall, grabbed the string for him and handed it back to him.  Nate let go again and the cousin handed it back to him again, after the balloon reached the ceiling.  This continued for about 10 minutes, release, grab, hand back, repeat.  My friend's cousin is a great sport. 

I looked at my friend and expressed to her that it is at times like this that I wonder if I should just let the family member know why Nathan is so hyperfocused on such a simplistic activity.  This would be common for a baby, but Nate's three.  I still didn't tell him, just talked to my friend about it.  She caught up with me a few minutes later and let me know that she told him- and he said, oh, ok.  He said he had friends with a child that has autism.  But he didn't think anything of Nate's behavior really- not until he knew.  So was it necessary to let him know?  Probably not.  I guess I am still struggling to find that line. 

Moved to Tears

Thanksgiving.  What a day.  I haven't been able to post because I have been busy Black Friday shopping- anyone else get a Wii for $12???  Thank you Johns Hopkins Hospital for those Target gift cards!  I would not, however, recommend going to Wal-Mart on Thanksgiving night (or really ever).  Police backup was present, and they were needed.  When I heard a policeman say "the first person who touches me is getting arrested"  I decided it was time to hit the road.  Sheesh

As I mentioned before, both of my sisters came for Thanksgiving this year, as well as my brother in law and their kids.  What a great day!  Jack first stalked his older cousin Will (who was incredibly patient by the way) but eventually found his way to his cousin Graeme who is only a year older than him.  They played baby lions for quite a long time and had a blast.  Both of my boys sat at the kids' table for the whole meal, granted we distracted Nate with gluten and dairy free rolls, which are apparently heaven.  It's nice to see that the kids can go quite awhile without seeing each other and pick up right where they left off.  My sister lives in Indiana so visits really take some doing.  That's just how it was with my cousins growing up and we can launch right in to our banter when we see each other even now.  

The "star" of the day was my little Nathan.  We are almost at a week into the tripled dose of methylcobalamin now, and let's just put it this way, two of his grandparents were moved to tears on Thanksgiving.  He is much more assertive in asking for what he needs these days.  While I was standing talking to my mother in law, who also came for a visit, Nathan walked over to me, pulled on my leg and said "come up" clear as day.  Instant tears in my mother in law's eyes.  And then when we were getting ready to leave Nate turned to me and said "I go bye bye".  It was my dad's turn.  He actually confessed that he had never heard Nathan say any words.  I know that I am always telling people that he is using new words, improving, making more eye contact, etc, but I guess that seeing really is believing.  And I am so glad that they both got that chance.  Because words coming out of Nathan's mouth are such a miracle- every time I hear them, I get teary too.  It takes so much work for him to use them, and I firmly believe that the methylcobalamin is really really helping.  I think the rest of our family now agrees!  What an awesome day. 

Information Overload

Wow.  Today was intense.  No, Frankenstorm has not yet reached us, although intense preparations are in progress- generator is gassed, in the wagon, and aimed at the exit of our garage, extension cords are detangled, we have purchased water, beer, wine, beer, wine, D batteries.  We are ready.

However that is not what this post is about.  I had an amazing opportunity today (as did our entire local TACA chapter) to hear the illustrious Dr. Anju Usman speak.  She is a prominent DAN! doctor who is based in Illinois.  It was amusing really, they turned the lights down at the beginning of the lecture, then changed their minds, worried people might doze, and turned them back up.  This was information for my children- my ears were glued wide open- the only way I was dozing off was if I received a blow to my head.

The main topic of the lecture was the gut-brain connection in autism and various treatment modalities.  All of this is controversial.  The medical community at large has not accepted these practices as of yet, mainstream medicine still considers autism to be a behavior/mental disorder.  Here is the basic definition in Stedman's Medical Dictionary (one of the first texts you are handed in nursing school- or at least in the "old days", haha)

1. A mental disorder characterized by severely abnormal development of social interaction and of verbal and nonverbal communication skills. Affected people may adhere to inflexible, nonfunctional rituals or routines. They may become upset with even trivial changes in their environment. They often have a limited range of interests but may become preoccupied with a narrow range of subjects or activities. They appear unable to understand others' feelings and often have poor eye contact with others. Unpredictable mood swings may occur. Many demonstrate stereotypical motor mannerisms such as hand or finger flapping, body rocking, or dipping. The disorder is probably caused by organically based central nervous system dysfunction, especially in the ability to process social or emotional information or language. Cf.: Asperger disorder

There is of course no mention of genetics, actual medical causes, and certainly nothing about the GI tract in this definition.  In order to start learning about these aspects of autism (and note that I do not say theories, as I believe them to be fact), one has to do their own research, to connect with the right people, to stumble upon an amazing pediatrician like our family did.  Our first pediatrician labeled Jack manipulative and "difficult".  The first developmental pediatrician told me not to bother with any special diets, if I wanted to try anything, B vitamins would be a good idea.  So when we first went to see our current pediatrician and she started talking diets, supplements, blood, stool and urine tests, I was overwhelmed to say the least.  Last fall was a blur of trying to implement everything that was being thrown at me, and then trying to understand why!  And I was a biochemistry major!  Can't imagine how other parents with different backgrounds must feel when confronted with all of this.  I thought our pediatrician was so "radical", and for a general ped she is, but in reality she was just getting us started on the right path.  And I have known for awhile that there is much more that we need to do.  Today just drove that point home a little more.  Consider me once again overwhelmed and confused.  I am not confused about the actual interventions, not even their scientific basis. I don't know what to do first, I don't know what each of my kids needs.  And they are so stinking different.  We go to see our autism doctor in less than two weeks- I will be armed and dangerous when I walk in to his office. 

Dr. Usman went through all of the functions of the GI tract, which was in general a review for me. Then she went in to many of the issues that can cause impairment in the function of the GI tract- bacteria, yeast, "leaky gut" (basically not absorbing nutrients appropriately)- it's all very complex, and if I were on the outside of this situation looking in I would find it completely fascinating.  Instead I find it horrifying- when it's your kid, you're sitting on the edge of your seat, you want too throw yourself at this person's feet and scream fix them, please!  Of course I didn't do this- I was grateful just to hear her speak for 3 hours. 

I am going to try to curtail the amount of information I communicate, as I know I have a tendency to start throwing a million different things out there and making people feel like their heads are going to explode (lol). I will say that the things that she talked about in her lecture touched on almost all of my areas of concern for the boys.  The very first thing she talked about, before she began her own lecture, was the MTHFR gene and research being conducted on this and what they are now calling "cerebral folate deficiency".  This just confirmed that I will be asking the autism doctor for an Rx for methyl folate.  I think the boys need it and I think he will agree.

Other areas that I have new plans for:
Jack's attention- I want to try GABA for him- Lee Silsby, my favorite compounding pharmacy has a cream- how much more convenient can you get when your kid can't swallow pills yet? 
Their guts- I want them retested for yeast (this is at least $200 out of pocket for each of them, sigh).  In fact I don't think Jack was ever tested for yeast- and he had major dental issues last year. This is a sign of many nutritional issues including gluten intolerance, but it can also be a sign of yeast.  He has many of the hallmark signs of yeast overgrowth- I am just so worried about Nate's speech all the time that I feel like I overlooked it.  They both likely need more probiotics and more cleansing diets- ie, fewer processed foods.  Nate may even need more antifungal medication to treat his preexisting yeast. 

There are many many other things that need to be investigated.  So many that I just can't even get into it here yet.  I need to sit down and do some major research.  In between preparing for the hurricane, reading for my More Than Words Class and developing new goal oriented behavioral play plans for Nathan that will be videotaped again soon, trying to keep up with the current interventions, cleaning, doing laundry and going to work.  Oh and cooking the special diets.  And Jack's OT gave me about 5 articles to read today, and "prescribed" several new interventions.  And even our marriage counselor handed us articles on autism and interventions this week- everyone is getting in on the action :).  I don't believe in cloning- except, right now, for me.  I need two of me.  (Ok Helen you can be cloned right now too, and Jo you too) I am glad that I feel overwhelmed by valuable information and the number of interventions that I want to try for the boys.  At least I am not lost, at least there is something I can do.  Man, I really need to make some lists!  

Sending some prayers to my two dear friends mentioned above.  You have both been so incredibly supportive of my family, and I will do anything I can to support either of yours.  Love to you both and wishes for a smooth next couple of days- you are always in my thoughts. 

Dinner's Ready- Accommodating Multiple Dietary Restrictions and Saving Money

I talked a few weeks ago about how overwhelmed I get with all of the different appointments, supplements, therapies, etc.  Another area that can get very overwhelming is the whole dietary aspect.  Jack is gluten and dairy (for the most part) free.  We allow him to have some real cheese, as when I saw his IgG levels that qualified him as "sensitive", they were extremely low.  Also, if you have ever seen the gluten and dairy free cheese "substitutes" you will understand why I feel like a cruel mama feeding them to my kid.  We continue with dairy free yogurt, ice cream, and avoid any other dairy when at all possible.  Nate was on the specific carbohydrate diet from December until, well, now.  I have not taken him off of it officially, and we still comply with it most of the time, but I have been allowing some cheats.  This was kind of inspired by the fact that he really hadn't made much progress while on the diet.  There are maybe 3 foods that don't follow the diet that I am allowing him to have in small amounts- his Envirokidz cereal, gluten free fries, veggie booty, and gluten/dairy free fish sticks.  Call me crazy, but I was having a really really hard time denying him one of the few things that I can tell he truly enjoys- food.  Also, because these foods are new and exciting to him, they are extremely motivating speech-wise.  He says "pop" for the cereal, and today he said "fry".  F is a totally new sound for him.  He is also trying to say cookie.  Today he also said "open" at OT and "back" to daddy.  He also said "thank you" to daddy the other day.  His OT said that his session today was probably the best one he had ever had.   So I would say he's doing ok with the new foods :-)

So anyway, when I was thinking of what would make life feel a little less overwhelming- groceries and meals immediately came to mind.  When we first implemented these diets for the boys, cost was really no object.  We were more focused on getting the right foods, preparing them appropriately and monitoring any changes.  But as we all know, these foods are extremely expensive and the grocery bills have gotten out of hand.  I have now been monitoring this much more closely and trying to find relevant coupons...which is kind of like trying to find a needle in a haystack.  I have limited my Whole Foods trips to every other week, and I buy only the speciality items the boys need during these trips.  Everything else comes from our local grocery store.  It means running to more than one store some weeks, but it's worth it.  The other thing I have done is dust off the slow-cooker and make the commitment to find recipes that we can all eat.  Sounds like a pretty tall order right?  It really hasn't been that tough.  Several of you have asked for recipes I talked about on facebook, so I thought I would post them here and tell how I modified them, if I had to, to make them suitable for the boys.  It's been way easier than I thought it would be!
Balsamic Pear, Chicken and Asparagus:
http://allrecipes.com/recipe/balsamic-pear-chicken-and-asparagus/detail.aspx?event8=1&prop24=SR_Title&e11=balsamic%20pear%20chicken&e8=Quick%20Search&event10=1&e7=Home%20Page
absolutely no modification needed- just make sure you have rice available, it needs to go over rice

Beef Tips and Merlot Gravy:
http://allrecipes.com/recipe/beef-tips-and-merlot-gravy-with-beef-and-onion-rice/detail.aspx?event8=1&prop24=SR_Title&e11=beef%20tips&e8=Quick%20Search&event10=1&e7=Recipe%20Search%20Results
just used gluten free flour blend in place of all purpose, also didn't make this rice, just used regular for the boys, and John requested egg noodles. would probably go well with mashed potatoes too

Easy Slow-Cooker Pot Roast:
http://allrecipes.com/recipe/maries-easy-slow-cooker-pot-roast/detail.aspx?event8=1&prop24=SR_Title&e11=marie%27s%20slow%20cooker&e8=Quick%20Search&event10=1&e7=Recipe
no modifications necessary

Slow-Cooker Meatloaf (this won some contest on Good Morning America):
http://abcnews.go.com/GMA/Recipes/story?id=7040711
This is a meatloaf, have been making this forever.  It requires the most modification- substitute milk with unsweetened coconut milk, use gluten free bread crumbs.  turns out really well- just use a little extra of the bread crumbs as the first time I made this it didn't hold it's shape very well.

I also roasted a chicken in the slow cooker and then made chicken noodle soup the next day.  The boys won't eat soup so we used real noodles.  yum!

I have the following planned this week:
Applesauce Chicken:
http://crockpot365.blogspot.com/2008/09/crockpot-applesauce-chicken-recipe.html
Brown Sugar Chicken
http://crockpot365.blogspot.com/2008/08/crockpot-brown-sugar-chicken-recipe.html
Sweet Mustard Roast Beef:
http://crockpot365.blogspot.com/2010/01/sweet-mustard-roast-beef-or-pork-slow.html

This website, a year of slow cooking, contains recipes that are all gluten free.  None of the above recipes require any modification at all.  Some of the others on the site do have dairy, but that's easy to substitute.  None of these recipes are expensive, none are anything crazy that the boys wouldn't try (although Nate doesn't really like beef yet), and they are all EASY.  And yield leftovers.  Added bonus?  The house smells great all day while I'm working.  I am hoping to keep this habit up....as I collect more and more recipes hopefully it will get easier to plan.  Just knowing that dinner is taken care of eases my mind quite a bit.