Treading Water

As we enter summer "vacation", my main focus has been on finding places for the boys to be while I work, making sure they're taken care of, and trying to afford it all.  I am revisiting some old supplements that I don't feel like I tried for long enough and reading about some new ones.  My autism book stack is getting higher by the day. 

I read and read and pray that one day I am going to find that magical solution for Nate.  That some day he is just going to open up his mouth and start talking.  That the stimming will calm and I'll be able to talk to him like any other kid.  There is so much going on in there, it just feels like everything he wants to say is trapped.  I don't know what more I can do for him right now.  So I guess I am feeling trapped too.  And inadequate as usual.  I am watching babies born almost two years after him pass him by verbally.  And while it hurts, I marvel at their development.  I know their parents are thankful for it, but do they get just how much of a miracle it is?  It's something I appreciate seeing more than I can express.

I am trying to rally myself for another round of searching.  And implementing.  Sometimes I am just so damned tired with just what we are already doing.  And yet I feel that same sense of panic creeping in that I am not "figuring this out."  I mean, what if there is nothing to figure out?  What if this is just the way it's going to be?  That thought terrifies me.  And it's one that I am trying to reconcile myself to, just in case. 

In the meantime, I guess we really are just treading water.  Surviving, doing a lot of running around, going to appointments, smiling and saying the kids are doing well, and coming home at the end of the day, collapsing, and feeling discouraged.  It's a dance we have honed over time, we are getting pretty good at it.

"D Day"

Tomorrow is what I have dubbed "d day".  I will be getting up early, leaving the house with Jack by 7 and heading to DC for a "quick" appointment.  I plan to be home in time to put in a full day of work.  Tomorrow Jack is starting Namenda as part of the study he has been enrolled in.  I am nervous, excited, scared, and hopeful.

  We have been reading a book about Aspergers- I feel like Jack is old enough to notice that things are different for him, and I want to set the precedent early on that yes, different is the right way to say it, not less.  The book I found is called "What It Is to Be Me!- An Asperger Kid Book".

It is like reading or looking at a map of Jack.  It is about a little boy named Danny who has aspergers- he talks about how he's very good at some things, like computers, but has a really hard time with things like writing. (check)  It talks about his very strong senses, and the fact that sound often hurt his ears, and sometimes he likes to wear headphones.  It addresses food texture issues (pasta has never once entered my child's mouth), personal space issues, fixations, difficulty listening, CONSTANT questions about how things work, and taking things super literally.  It is a great book and Jack really likes it.

I tried to use some of these concepts to explain what this new medication is all about, and I have to admit it, mommy FAIL.  I used the example of his "super ears".  Or tried to. I was attempting to explain to Jack that he would be taking a new pill that might help him feel a little different, like things won't hurt his ears as much.  Somehow, he turned it into this- the pill is going to make sounds and it will hurt his ears.  Sigh.  So for the past 5 days I have been trying to undo this damage- every time he takes a supplement that's in pill form we examine it and confirm that it does not in fact have a mouth, so it can't make any sounds.  Hope this works tomorrow.

Here is some anecdotal info on Namenda.  Oh, and I should mention that this study, which is taking place at multiple centers nationwide, just increased it's enrollment from 120 participants to 900- seems it is pretty promising.

http://autismliveshere.com/2012/03/namenda-month/

https://imfar.confex.com/imfar/2012/webprogram/Paper11938.html


Here is the study we are participating in:
http://clinicaltrials.gov/ct2/show/NCT00872898

I am NOT a fan of giving my child drugs.  That being said, this year has been very very difficult for both myself and Jack's father to watch.  His difficulties in the school setting are almost painful to see, and knowing how smart he is and knowing how much the "noise" is getting in the way of him functioning at the level he is capable of is just awful.  I have tried B12, GABA, inositol, DMAE, melatonin and magnesium in terms of natural therapies.  I have tried focalin and intuniv in terms of ADHD therapies.  Nothing has helped, or at least not significantly.  So this is where we are.  This is the next step.  And at least with the study, he will be closely monitored.

So please say a few prayers for our family, the next few days could be very telling. 

Baby Steps

Trying to reorganize a bit here.  I am still working on a realistic supplement schedule and decided that since I use my iphone for most other appts/responsibilities (for God's sake I have an alarm on it that goes off at 3:45 every afternoon so I don't forget to go get Jack off of the bus- I mean what if I'm on a conference call?  It could happen), I might as well see if there was anything relevant for me in the app store.  I didn't find a schedule persay, but I did decide to upgrade my "Autism Lite" to "Autism Pro" for $4.99.  This app enables you to track your child's behaviors daily, including things like sleep, stimming, aggression, stress, bowel movements...when I upgraded I could create any category I wanted and I could track 2 children.  So I added a category for each supplement for each child, made them due daily, and then put in the behaviors that are relevant for each child.  Heck they even have the weather on there as an option in case you feel that is affecting your child's behavior.  This could come in so handy next time we go see the md- how much more accurate can you get right?

Sometimes if I have a little box to check I feel more responsible to get that supplement into my kid.  Because if I am documenting his behavior, it is not good, and I didn't give all of his supplements to him, whose fault is that?  I am Catholic- I thrive on guilt!

For those of you who are interested, here is some more information below.  Wish me luck.  Now to draw up the schedule itself and determine where I am going to hide this stuff....

Autism Tracker Pro

Autism Tracker can be life changing for families with an autistic child.  Here are some examples of what to track and analyze: Sleep, Stress, Weather, Happiness, Activity level, Behavior, …


Explore Autism. Track what matters to your child and your family. Use the visual calendar and multi-item graphs to view an discuss patterns. Share individual events or entire screens with your team using email or protected Twitter groups. Collaborate with the Track & Share team to keep this app the best of its kind. Contact us.

Navigate through Screens
Swipe across the screen title. This will bring you to the next screen: Mood - Behavior - Food - Health - Report. Alternatively tap the Screens button and tap on the Screen name to jump there.

Link to iPad screenshot: iPad Track screen

Make an entry
Several ways to make an entry. Use the way that works best for you: Tap the item on the Track screen. Choose the value. Save. Or use the calendar, double tap a date or tap the blue button “Make new entry”. Special feature: instant entry for Yes/No items: on iPhone tap the item to cycle through Yes, No, Check box. On iPad double tap the item. Or double tap a field in the calendar for instant Yes / No entries.


Set up a new item
Tap the “Edit” button on a Track screen. Tap the blue button “Add Item” button. Select the type of item. You can choose from

• Items that let you track if something happened or was done (Yes / No)
• Visual Scales (Pain Faces, Weather, Severity, etc.) 
• Number items to track things like time, weight, $, cups, pills, decimals, or count things (formats: 1 12 123 1234 1.1 1.12 12.1 123.1 0:00)

Enter a name for your item. 
Select a color for the item’s graphs.
Add to badge counter to be reminded to enter data for the item. A red circle will appear on the Autism Tracker app icon showing how many items still need an entry for the day.

Show on Screens. Select on which Track screens to display the item. The same item can be displayed on several screens. For example, the Stress item is shown on the Food, Mood, and Sleep screens. You only need to enter data once for an item and the information is updated on all relevant screens.
Set up a new item - special settings
Enter a Unit Label (for Numeric items). Example: cups, $, lbs, kg, hours

Select Entry Icon (for Numeric items). You can select an icon from built-in icons, chose and scale an image from your image folder, or take and use a photo.
Edit icons and labels (for Visual Scales). Tap on an icon or a label and edit it. Full customization - make Autism Tracker your app. Have you tried using photos of your different moods? 

Total and Goals (for Numeric items and Visual Scales). For data entries that should be added up to reach a goal, select where your goal applies: for a day, a week, or a month.  E.g., 2 servings of fruit per day. The goal is adjusted automatically for different views (daily, weekly, monthly).
For setting a weight goal, choose not to add up entries. You might want to start a graph at a higher value than zero to be able to spot changes more easily. E.g., if your weight is 190 lbs and your goal weight is 180 lbs, then starting the graph at 175 lbs will give you good visibility of weight changes and trends. For Visual Scales goal setting is simple, select an icon here to set it as the goal. 

Active on days (for Yes / No items). Check on which days data should be entered. For example, practice Yoga on Tuesdays and Thursdays. A checkbox will appear on the Track screen on active days as a reminder. Data can be entered every day. However, only Yes or No entered for active days are considered for the weekly and monthly % of Goal Completed graphs.

Remove an item from a screen
Tap Edit. Tap item. De-select screens on which the item is displayed.
Delete an item for good
Tap Edit. Tap item. Tap red Delete button at bottom of screen.

Graphs

It Just Crept Up On Me!

I was trying to make this evening somewhat productive after the last few days have been a wash.  We have been in lockdown basically since the Dr. Brenner appt- which makes me highly suspicious that this is where we picked up the bug, and I haven't had a chance to sort through all of the supplement/medication changes we made.  I did get a chance to research them, verify doses, and order the best possible formulations, the ones that were not prescriptions anyway.  It was funny, when I took Nate in to be tested for flu, I brought our regular pediatrician the note that Dr. Brenner always gives me to give to her as communication and she said Jenny, I'm a doctor and I can't read this one.  Worst thing was I had had to call both the local pharmacy and our compounding pharmacy and ask about all of the prescriptions he sent in before I could decipher the word she was pointing to- Carnitor.  Now if a nurse and a doctor can't read your handwriting- that's pretty bad.  I'll cut him a break, he sends hand written notes to our primary pediatrician- he gets major points for that.  So anyway, I started by just writing out exactly what I am expected to get into these boys.  And that is as far as I have gotten- too overwhelmed.  I need a new plan- hadn't realized how much we were up to- like I said, it just crept up on me.  And this is also with stopping things that didn't seem to be working.....
Here is our current list (this is a good reference spot for me- guarantee I won't lose this :))

probiotic:
Nate 1/4 tsp qd
Jack 1 tab qd

Calcium:
1/2 tsp qd

MSM
3 grams/day- 1 scoop

P5P- Nate
50 mg tid

zinc
15mg/day 1/2 cap

GABA- Jack
700mg tid

curcumin- Nate
1 scoop qd

miralax- Jack
1 scoop/day

Inositol- Jack
2000 mg tid (1 scoop)

fluconazole
2ml qd

clonidine- Jack
0.2mg qhs

leucovorin
2.5mg 3x/week

carnitor
1tsp bid

vitamin c
1/4 tsp qd

speak smooth (fish oil + vitamin E)
1 tsp qd

methyl B12 shots
Nate 3x/wk
Jack 2x/wk

transdermal glutathione
0.5ml 2x/d

Gasp.  I gotta find me a schedule, or a way to sneak an NG tube in while the boys are sleeping every night.  Seriously, is it just me, or is this just obscene for kids who don't swallow pills yet?  Well Jack actually can swallow small ones now, but I am not pushing my luck- actually maybe I should.  Ugh....help!

Could it "B"?

Nate has been on methylcobalamin shots since about February.  This is an activated form of vitamin B-12 and it has been found to be helpful to people with autism, especially those with the MTHFR gene (which Nate has).  The dose was increased in May.  We have definitely seen improvements in Nate with this addition, increased eye contact for sure, and slow steady progress in other areas.  The idea of giving shots for many parents is appalling.   I have been able to handle it with Nate- he was so dazed when we first started the shots that he didn't even react to the needle in his bum.  Every once in awhile I'd get a whine, but honestly he cried harder when I wiped his nose- no exaggeration.  As he became more aware, he started crying with the shots, but now he has progressed to being mr. attitude about it.  He runs away, laughing, and then after the shot he rubs his butt cheek while glaring at me just long enough to get his point across and then he goes back to whatever he was doing. 

When we went to see Dr. Brenner last week he stated that since Nate is a "responder" to the methyl-B12 but has not made a ton of progress we should go ahead and increase his dose.  I had been giving him 0.1 cc on monday wed and fri.  He increased it to 0.3 cc three times a week, but since I still had about 6 injections of the original dose he suggested I just double up on those for the next week and then go for the full increase when I refill.  So for the past week I have been doing double shot duty- Natey's poor bummer.  That being said---- there IS a difference.  An aside, these effects tend to take place very quickly, within days.  There are some kids where nothing is seen for up to a month who still end up being responders, but that is not the norm.  Once a child is identified as a responder they need to continue this treatment for approximately 3 years.  It's a small price to pay if you're seeing great improvements.

So back to the changes I am seeing in Nate- more repetition.  He is pointing to all of the different animals in his books when I say "touch _____".  He is choosing between 2 books.  When he was making a turkey at school today he said gobble.  I find him literally staring into my eyes with an intensity I didn't know he had in him.  He is tantruming more, oh joy.  There is just an over all increased awareness.  Then today I saw some physical proof of improvement.  I am not going to go into all of the science of it, plus it's kinda gross, but suffice it to say that many many children with autism have significant GI/poop issues.  It is linked with the MTHFR gene, impaired methylation, which makes sense since other individuals with this gene mutation tend to have diagnoses like IBS and crohn's.  Today, Nate had his first solid, non-grainy, and not nasty smelling poop in I can't even tell you how long.  I did a complete double take.  I know you are all thinking that all poopy diapers smell- I beg to differ!!!  We are talking BAD!  Normal poop smell is pleasant after that.  I believe this improvement is a result of the increased dose of methyl-B12 and the addition of leucovorin last week.  I believe his little system is functioning better.

Despite all of the positives, there has been one negative- and that is MAJOR sleep disturbances.  Now initially I would have said that this was more related to the fact that he is transitioning to a big boy bed, but he had several nights last week when he slept through the night.  The last 3 nights Nate has been up for literally 4 hours in the middle of the night.  And it's not that he was just awake, he was WIRED.  Reminded me a bit of Jack when he is going through a bad sleep stint.  I gave Nate a double dose of melatonin at 3am this morning and it did nothing.  I was starting to feel bummed out, as this can be considered an "intolerable" side effect of the methyl B12 if it persists, so I started googling my little heart out as usual.  Found this in a presentation given at a TACA conference by the foremost expert in methl-B12 and autism.

1. Folinic acid should be added after the first 5-week clinical trial but not at the same time as Methyl-B12. It should be added alone and its dose should start low and then be incrementally increased to see how it is tolerated. From my research, approximately 20% of children become hyper and/or cannot sleep when folinic acid is added.

So we added leucovorin- an even more broken down/active form of folic acid than folinic acid.  Guess what?  I increased the dose on Monday!  Can I say bingo now?  So tomorrow I will cut the dose of this and see if we get some sleep.  I really don't want to have to decrease the B12 when I am seeing so much positive, so I hope I am right about the leucovorin being the culprit.  Keep your fingers crossed for us.

Resources for ya:

http://www.tacanow.org/family-resources/methyl-b12-a-treatment-for-asd-with-methylation-issues/

http://www.drneubrander.com/

Just Keep Swimming

What a crazy busy couple of days this has been.  After yet another migraine filled weekend I was frankly worried that I couldn't get everything done these past few days.  But as always, I muddled through.  Not that the week is over, but the worst is.  Sometimes I feel like Dory from Finding Nemo- Just keep swimming...  At 8:30 yesterday morning we met our family photographer at a park for portraits- while I have been dreading this, it was also hugely important to me.  I wanted to recognize and celebrate our little family and our survival after the past year.  We even did some shots of just John and me, first time we've done that since our wedding.  That part was really nice.  Nate was incredibly fussy the whole time- granted it was freezing outside, but I had both boys layered to the max and thought they were rather cozy.  It was breezy, and Nate even cried when we put him on the swings.  The only ways I could get a smile were to throw him up in the air or alternately squat down on the ground and run at him really fast.  Seriously, I am sore today.  Our photographer Heather is amazing and I am sure she managed to get some good stuff. 

After that we had an 11:30 appointment up at our boys' autism specialist Dr. Brenner. Literally on the drive over Nate developed sure fire symptoms of pink eye- by the time we got there my poor boy was crusty.  That wind must've hurt so much!  Poor buddy.  We hadn't seen Dr. Brenner in several months and I knew the appointment would be jam-packed.  I have to touch once more on just how amazing this man is- he spent over 2 hours with us- now granted he took all of his calls while meeting with us, filled out requisitions and ordered his lunch.  I am completely great with that- his time is valuable and the fact that it was an "insurance covered" visit means that it should have lasted no more than 15 minutes for each child.  Clearly he does not subscribe to this guideline, at least not with his kids on the spectrum.  He went through all the lab results, there were several interesting things.  They do both have the MTHFR gene- as he stated, many many people have this, it's only in the past 15 or so years that it has become a "problem".  There are many theories about this, but the bottom line is that most professionals think it has to do with environmental exposure- BPA, antibiotics, vaccines, contaminated water and soil, just to name a few triggering the issues this gene mutation can cause.  He did prescribe a form of folic acid that is further broken down- leucovorin.  Hearing this medication name made me freeze up for a second- it's a drug I used to give IV to my oncology patients when they were receiving certain chemotherapies.  It basically guards their bodies from harmful effects of the chemo.  That is where this drug is catalogged in my mind.  Time to reframe.  So that was one of the MANY changes he made to the boys' regimens.  More labwork, including urine.  He increased Nate's dose of methyl-B12, asked me to try it with Jack as well.  I am worried sick about giving Jack injections, but it is what it is.  We can do just about anything we put our minds to as a family.  He also prescribed something called MSM for both boys, told me to increase their P5P, start them both on GABA, and start transdermal glutathione.  Oh and just in case I wasn't about to pass out, he would also like me to try adding the Feingold diet.  This eliminates all synthetic coloring, artificial flavors and preservatives and all phenols.  Since we do most of this, doesn't sound so bad- except that phenols are basically in most fruits- apples, berries, grapes, oranges, peaches, plums, tangerines.  Jack's favorite foods. Awesome.  Not feeling the motivation on the elimination of fruits.  Sigh.  Jack's hair samples came back with high levels of mercury.  One of the urine tests should confirm this.  This was the opposite of what I was expecting- thought it would be Nate, if only one of them.  Jack had an incredible amount of dental work about a year ago due to an enamel defect, and now John and I are wondering about what type of fillings they used on him.  Further investigation of this is needed. 

After that appointment, I went home and put in a half day of work.  Went to bed early as today was a full work day, another md appointment for Jack, and squeezing in voting.  Then last night, the shit hit the fan.  Both boys were up off and on all night.  Sleep has been becoming more of an issue over these past few weeks again- Nate has been falling into a pattern where he wakes up at about 2:30 am and refuses to go back down- screaming until I come back in, like tantrum screaming.  I resolved last night that I was going to let him cry it out.  It usually takes 1 or 2 nights to get him back into his usual pattern.  Last night Nate had other plans.  After he woke up and I rocked him for a few minutes I put him back down and of course he started screaming.  Then I heard the usual thuds of him throwing everything out of the crib.  Then I heard a really big thud and a scream.  And Nate was out of his crib.  CRAP.  Just to be sure it wasn't a coincidence, I put him back in and watched him basically swing himself over the bars- no leverage, nothing to climb on, just sheer force of will.  And as I watched him I realized- I. am. completely. screwed.  I have no idea how I am going to keep my sweet baby in a bed.  We all know by know that his receptive language comprehension is extremely delayed, and I just don't think he will be able to grasp this concept.  However, safety first.  So down came the crib today- thank you so much John for doing this so I didn't have to sit and sob while I did it.  We were hoping to eek out another few months of him being our "baby".  It's all so bittersweet. 

Of course we had nothing prepared for this situation- so tonight he will be on his mattress on the floor.  A gracious mommy friend will be letting us borrow her toddler bed for a few weeks until I can get a bed for him. I don't wanna.  Does this really mean I don't have a baby anymore?  That just breaks my heart....

The good news is that this is what happened this evening since he didn't sleep last night....

The bad news is that I have no idea how long this will last, so I'd better hit the hay sooner rather than later.

Isn't he the most precious thing?  Sometimes I wish he could stay little forever...

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. 

You May be An #Autism Parent If....

So I have been a part of the Twitter Autism community for a short time now, but I have to say it has been one of my most positive experiences as an Autism mom.  I was telling our marriage counselor last night that not only is it a constant source of information and resources, it is also constant validation.  I am hearing so many of the same experiences that I have on a daily basis.  It is refreshing and reassuring.  I am not alone in the things I observe and live with.  For instance, there is a whole thread that is- you may be an autism parent if....

I will post some of my favorites, just so you get an idea.
You May be An Autism Parent if:

You've learned what really matters in this journey of life

Your child is turning out to be your teacher...

Your child tells you the same things/stories over and over and over again until you want to scream!!!

You're grateful for any achievement your child makes, no matter how seemingly small

 The really great days stand out because they are so rare

You feel like a chemist each night fixing meds and vitamins.  It's funny because it's true.

The walk home from school takes ages as s/he has to hug each lampost they pass.

You don't pay attention to gender specific toys or movies, as long as your child loves it, that's what matters

You cut ties with all negativity/judgement and focus on those who build you up and support- nobody else matters.

You feel like everyday is a battle with the school system.  Advocacy never takes a break. 

The morning starts with a meltdown over which light switch to turn on.

You consider adding "days without incident" sign to the wall

Almost every day you feel the highest of highs and the lowest of lows within seconds of each other. 

Your son has full conversations with himself on a regular basis.  And you find out a lot about your son this way.

You have to explain the next days plan every night before bed to make it through the next day or you could pay.

Your child has to go to the surgery center and go under gas to get their teeth cleaned.

binder has a whole other meaning- yours is full of OT, PT, IEP, GI consult, neurosych, lab tests, speech eval...

You want to smack anyone who says, don't worry, he will grow out of it.


Any single one of these could apply to our family on any given day.  And most families of a child with autism.  This sense of community is priceless to me. 

Wish I could give each person credit for the thoughts they shared, instead I will just say, if you are on twitter, type in #youmaybeanautismparentif.  It's worth the read. 

Grief, Hope, and Some Really Cool IPhone Apps

OK- how, you ask, can this post be cohesive with such varying topics?  I doubt that I will be- sorry about that.  I am a bit scattered right now.  I have been in crazy organization mode this week- putting together a really strict budget and just trying to get on top of things in general.  I know there are iphone apps for almost everything, but haven't really taken the time to explore very much- can't imagine why, with so much time on my hands.  I'm just gonna throw the ones out there that really impressed me this week-
Cozi- family organization- family calendar, can send automated texts to the hubs to remind him of appts, grocery list, to do list
Allrecipes- has a recipe spinner- you plug in what type of dish (ie main course), main ingredient, and prep time and it throws ideas at you- and compiles a grocery list of the items needed to make them
Goby- lists local events based criteria like date, family friendly, etc, and moves with you- ie, if you change location it senses that and gives you the events for your current location
ShopSavvy- this might be my favorite- it's a barcode scanner- you can scan any item you want to buy and it runs it through the system and tells you what local store or internet seller has the best deal.  you can also type items in, but why would you when scanning is so much stinking fun?

Then I decided to type in autism.  It's a well known fact that there are a ton of apps that are helpful to children with autism- the ipad is a coveted item among most parents who have children with autism.  The iphone is a bit tougher since the screen is small and most of these kids have fine motor issues, but I did find a couple that I will be trying:
Autism Lite- this is for parents- it helps you track supplements, diet, behaviors such as meltdowns, self stimming behavior, sleep, etc.  of course for the full monty you have to pay- the jury is out on that
Autism iHelp- basically ABA cards on the iphone screen- practical objects and such that you can go through with your child where ever you are- you can also opt for a voice over to say the words to the child
AutismApps-  this is hilarious, but helpful.  It's an iphone app outlining all of the autism iphone apps.  but seriously, it reviews them, categorizes them, etc.  very helpful

So as John would say, stand back!  I am on one of my organizational rampages.  Everything will be slow-cooked, coupons will be clipped, comparison shopping will be constant, and lists will be everywhere.  I usually get like this when I am super busy.  There are an overwhelming amount of appointments, etc coming up for the boys.  If I don't get a bit more efficient I will be drowning in a sea of gluten free fish sticks and dirty laundry.  Not that there's anything wrong with that.

Speaking of busy- today was Nate and my first "More Than Words" class.  It was really an orientation for the parents- the kids will, for certain classes, be in childcare with some of the aids that work with them in ABA.  So it wasn't quite as bonding for him and I as I had hoped- but it will be in the future.  I realized while I was there today that I felt a tremendous sense of relief.  At first I couldn't pinpoint the reason for it- was it because I was among other "autism parents"?  No, I go to my TACA meetings, talk to other parents at the boys' OT, etc.  Was it because I am hoping this will really help Nate?  Honestly, no, although I am very optimistic about this.  Then it hit me- these are allparents that are at the same stage of this journey as I am.  Even at TACA, most of the parents have older kids, they are wiser, when I talk to them I feel like I am "behind" or "naive" about the interventions.  Not that they are condescending, they are not at all.  It's just how I feel.  I guess the best example I can give for parents of neurotypical kids is what I experienced when I joined playgroup with Jack.  I went to the organizational meeting and listened as the leader divided the kids in Jack's age group between two groups- first time moms and moms with other children.  At first I was kind of insulted- why was that necessary?  I so get it now.  Now that I have two kids- finding a time to meet would be so much more complicated, playgroup would be an "extra" activity, as opposed to the absolute lifeline it was to me when Jack was a baby.  With our first kids, we all freaked about everything, now we are like, oh reflux, really?  Colic, really?  moving on....If I had been in the playgroup with the second time moms I would have felt overwhelmed and afraid to speak up.  And that's how I feel at TACA quite often. 

If anything, I have been dealing with this longer than most of the parents in this group, because of Jack.  I felt relief because I could see my hope, frustration and grief mirrored in the faces of these other parents.  One of the moms cried multiple times today, just during the introduction.   At first, I felt pretty in control of my emotions, and then they put on a video of testimonials by other parents who have been through the program.   They made sure to include children with varying degrees of autism- several who were verbal, a few who were non-verbal.  I was struck by some of the footage of the parents talking about how grief-stricken they were when their children were diagnosed.  I wanted to scream "yess!!!!!" Thank God they included this.  We ALL needed to hear it, to know that it's normal.  So many friends and family members try to comfort us- but unfortunately, many of the things they say end up making us feel worse, or guilty, or minimize what we are going through.  Things like "it's not fatal".   Ummm, yes, I know that.  I am not worried about my child dying, and I am so so lucky for that.  However, I am worried about his life- what kind of life he will be capable of living.  And that is a very real fear.  I have had people say things like "someone has to work at McDonalds", or "he'll find a skill".  This is NOT comforting.  What parent doesn't want their child to thrive?  Anyway, I digress.  I don't think there were any dry eyes when the video was over.  I have a feeling that this class is going to take on a support group atmosphere as the the parents get to know each other.  This thrills me.  Next week we will be videotaped interacting with our children individually- kind a "pre-course baseline".  They will do this multiple times throughout the course, presumably to show progress.  I am ready to get moving on this- it is quite time consuming, there is extensive "homework", both reading and specific activities with Nate.  Thus the need for extreme organization.  There- see, I tied it together for you, haha.

Moving on- Nate has continued to have a very good week.  He is pointing more purposefully, he has been more verbal.  At one point this week he started saying "hug" and then running into my arms.  Bliss.  But besides expressing himself more, I get the sense that he is understanding more of what we are saying.  "ready to go bye bye?"  He heads for the door.  And, as insulting as it is to the sitter, the minute he sees her, he now bursts into tears. We got back from class today, and when he saw that she was still there he lost it.  It took both of us several minutes to convince him that mommy was staying.  Then he was fine.  We have been reading the "duck and goose" books at bedtime.  He will now point to the "duck" on every page when I say "touch duck".  Now, I am not picky, he can point to either the duck or the goose, and that counts for me.  On one page there are three birds- now when I ask him to touch duck, he individually points to each one of them.  This is huge for him, and shows that he is not doing it randomly- he understands what I am asking.  John and I both feel that major progress is being made- I started him on some digestive enzymes this week too, hoping this will be helpful.  Keep praying for him!!!

Sorry this was kind of all over the place, but it kind of matches my mood this week.  Have a good night and thanks for listening!

A New Opportunity for Natey and Mommy

I got a handout in Nate's backpack today.  It's one I have received multiple times and chosen to ignore.  Why?  Because I didn't think that what they were offering was possible for us.  The county has made the investment of sending their infants and toddlers speech pathologists to be certified in the Hanen program.  And they offer it to the families of the children in their ABA program FOR FREE.  The program is called "More Than Words", and it was developed specifically for parents of children on the autism spectrum.  It involves 8 2 1/2 hour group sessions, a pre-program consultation, activities at home, and 3 videotaping sessions where the parent and child are taped while interacting, using the methods taught in the program.  The information in the program deals with improving communication skills. 

http://www.hanen.org/Hanen-Programs/Programs-For-Parents/More-Than-Words-Parent-Program.aspx

The More Than Words Program was designed specifically for parents of children ages 5 and under on the autism spectrum. Addressing the unique needs of these children, the program provides parents with the tools, strategies and support they need to help their children reach their full communication potential.
More Than Words does this by empowering you to help your child reach the following three goals:

1. Improved social skills
2. The ability to engage in back-and-forth interactions
3. Improved understanding of language

The More Than Words Program focuses on your natural, day-to-day life with your child. You’ll learn how to tweak the activities that you’re doing with your child already and turn them into productive and enjoyable learning opportunities.
You’ll discover how to take everyday activities like meal time, story time and bath time and use them to help your child improve his communication and social skills.

Here is a little more information (you know how much I love to provide links :-) )

http://www.hanen.org/Helpful-Info/Research/More-Than-Words-Parent-Research.aspx

Know what this sounds like to me?  It sounds like the portion of the study at Kennedy Krieger that I wanted to participate in, but was not lucky enough to be randomized to.  It sounds like a program that even a month ago, I would have doubted would be beneficial to Nathan.  Because he wasn't "there" enough to participate, to focus.  He is, without question, there now.  The changes in Nathan have been consistent these past few weeks- we have continued and been increasing the speak smooth.  I took Nate to get Jack at the bus like usual today- our neighbors were delighted to see him pointing to the things around him and saying "and that, and that, and that".  He asked for more bread while we were there, and then more cup.  He continues to look at books almost constantly, and he is pointing to more and more things while we read them at night.  Last night he was pointing to the duck throughout one book we were reading.  And he is doing more things like clapping hands when I ask him to.  The jist of it is that he is much more responsive.  His OT said something this week, his sitter, his mimi, and of course daddy and me.  I feel the need to grab onto this change and run with it as fast and hard as I can.  So the handout came at the perfect time.

The obstacles.  Ahhh, yes, those.  The reasons I have never entertained participating in this program in the past.  It takes place on Fridays, about 40 minutes from our house, from 1pm-3:30pm.  For 8 weeks.  This is Nate's naptime, and he is supposed to attend with me.  But I listened to him shout and talk to himself for his whole naptime today.  He can miss his nap.  Done.  Jack- school.  He gets home at 3:50pm and there is no way I will be back in time to meet the bus.  Grammy is going to come meet him on Fridays (love you more than words mom).  Done.  And the biggie- my job.  Take a half day every Friday for 8 weeks?  No way!  Yes way.  My work partner (and dear friend) is completely supportive, I spoke with my supervisor today- supportive but wanting to check with the higher ups.  They said yes.  So.....DONE!  I am ecstatic!  I am so grateful that my company is willing to work with me on this- taking 4 days of vacation time to help my kid is nothing, right?  But Friday afternoons are a precious commodity in the business world.  I am so lucky.  It's not just the attending the program thing, although that is the biggest part of course.  It's getting this one on one time with Nate.  And gaining tools that I can use in our everyday life.  I'm really excited!  Our evaluation is on September 28th.  Our insurance constraints have been such that I have not put Nate in speech therapy.  When I asked his instructors and therapists from school, they felt that he would benefit more from OT at this point, so that is what we have done.  Now I have a way to give him speech too- and I get to be involved.  So psyched!!!! 

"I Want More"

Excellent weekend!  I would probably say this no matter what just because of the weather, which is heavenly, but it was made extra special by a very alert, verbal Nathan.  As usual, John and I are trying not to get too excited- but we did just start him on the "speak smooth" this past week, so fingers crossed.  Today was an especially good day for him.  We went to our favorite haunt, the airport playground this morning, and Nate really enjoyed climbing all over the place.  He did his usual sitting on the ground and digging through the recycled tire ground cover for 20 minutes at a time thing, but he also played with daddy quite a bit.  Got a few good shots....

\

He conked out on the drive home at around 12:30 and slept until about 2:30, which is a pretty good nap for him.  He woke up ready to go and more alert than we have seen him in awhile.  He hadn't had lunch yet so I put him up in his seat.  He immediately started pointing around the room, saying "that" over and over again.  He hasn't pointed constructively in a really long time.  This made us feel a little giddy.  Then he said "more cup" and "more bread".  We are noticing some more 2 word phrases like this lately.  We have been the meanest parents on earth for quite awhile, refusing to get him "more" unless he says or at least indicates in some way exactly what he wants.  It seems to be paying off.  His Mimi came for a visit, and while we were sitting there talking, he kept saying "more" again and again.  Since he wasn't telling us what he wanted we were studiously ignoring him.  All of the sudden we hear "I want more!"  Thank God he said it in front of 3 adults, or we wouldn't believe it ourselves.  This was really really big for him.  Later he walked over to his school backpack, pulled on it and said "go bye bye".  Holy mother of moses!  

Here are a few more shots of him focused on his books....so sweet, and new for him....

John, Nate and I were hanging out in the kitchen while Jack and Mimi were playing and Nate started in with one of his favorite games with mommy.  It's kind of embarrassing, but he likes to smack my head to the side while I make this ridiculous noise and then laugh like a little maniac.  He also loves to shove his finger down my throat- not so funny to mommy.  PLEASE excuse my presence in the below video.  I just wanted you to see Natey having fun and really engaging.  I also wanted you to see how affectionate he can be.  I hear stories from other parents of children with autism about how disconnected they sometimes feel from their children- how they never get hugs, or eye contact, how they feel like their kids don't even notice when they're not there.  I don't know if I could live with that, honestly.  I am so so lucky that this boy is so loving.....

Family Time

Quiet weekend on the home front.  Kind of nice for a change.  I continue to believe that if I had a three day weekend every week my house might actually be clean.  Oh well.  The family spent some time with each of the grandparents- my parents on Sunday and John's mom today.  It's been awhile since we have had the time to just sit down and have a meal with each side of the family and it was really nice.  Lately whenever John or I see our respective parents we are running out the door to an appointment or a meeting.  It was nice to stay put and enjoy each other's company.  AND  I didn't have to cook two meals.  :-)

I am very impressed by how much everyone has respected the boys' diets in our family.  I hear stories all the time about families not only not providing food the kids could eat but even giving them "contraband" foods.  My mom cooked a fully gluten and dairy free dinner including dessert.  Even John liked the dessert and he generally avoids gluten free sweets like the plague.  So that's a major compliment.  John's mom had multiple things both boys could eat for brunch this morning and had bought some special bars for them, which I allowed Natey to eat.  He rarely gets anything sweet, so he gobbled it up.

I was commenting to my mother in law this morning that I am amazed at the antics all of the grandparents are willing to put on in order to entertain the kids.  There is no way any of this would have happened when WE were kids!!!  For instance, yesterday my mother was looking at a book she bought especially for Jack that is full of different bird calls (it has the audio).  He is so obsessed with the book that we have to set the timer before they start looking at it, otherwise they could be there all day.  Anyway, I look over and my mom is sitting there with her head on the couch and looks like she's sleeping.  I asked her what she was doing, if she was ok.  She whispered to me that Jack wanted her to pretend she was asleep and to then pretend she was surprised by the bird call when he pressed the audio button.  So he presses the button for one of the many varieties of Orioles contained in the book and my mom's head shoots up and she gasps in a very surprised voice.  Then she puts her head back down and pretends to be asleep.  Repeat, repeat, repeat.  What would she have said if I wanted her to do this when I was a child?  Well first of all, she wouldn't have bought a book with audio because she would have had to listen to it continuously since we never "went home".  But I can guarantee that she would not have been collapsing onto the couch just to appease me.  I love it!  She also does a mean humpback whale impression, which she had to repeat for months last winter.  Ha. And John's mom is always "flying" around our house pretending to be one plane or another.  Or pretending to be the mama allosaurus while Jack is the baby.  Today she was schooled on chinstrap penguins, and white lions for hours.  While John and I stared at each other in relief that we were getting a break from all of the "knowledge".  I'm lying.  Actually we were chasing Nathan up and down the stairs and standing over him trying to force him to say words.  What can I say?  We rarely get that kind of opportunity when Jack is around- he never stops talking.  Seriously.  Never.  We were working on "go up" and "go down".  Right now he pretty much sounds like he is saying "gum".  Hey, it's something.

Nate's pediatrician recommended a new supplement when I took him for his checkup last week.  It's called speak smooth.  http://www.speechnutrients.com/.  Not going to hurt him- it's mainly concentrated omegas and vitamin E.  So waiting for that to come in the mail.  Oh and I finally bit the bullet and ordered melatonin to try with Jack.  Mommy and daddy need some freaking sleep.  Pray for us that this works.  This is one of those kids who becomes hyper with benadryl.

We have had a pleasant surprise with Nathan as of late.  He kept disappearing; he often wanders around by himself, so I didn't think much of it.  But I could hear him babbling on the monitor so I went up to his room to check on him.  I found him "reading" books.  We have never really been able to get him to focus on books, except at bedtime.  But for about the past week, every time he wanders off that's where he goes.  There are books all over the house, our room, the living room, the dining room, the kitchen.  And he just keeps picking them up and looking at them.  I consider this a very good sign.  He has also figured out how to climb up into our big bow window in the living room.  Here is how I found him on Sunday morning...

After "reading" for awhile we switched to blocks.  A symptom of autism is the whole "lining things up" thing right?  Yeah, this kid does NOT have that!  As a matter of fact, I can't even put the blocks next to each other without him knocking them around.  He likes chaos :-).  He is in the right house.

Jack joined us for some bouncing on the trampoline.  He has another loose tooth and one of his "grown up" teeth is coming in.  It looks HUGE

Lazy weekends are unheard of around here.  It was really nice to kind of sit back and relax.  We actually had two days where we didn't have to get the kids out the door by 8am.  That was really nice!  Tomorrow is the first day that they both go to school.  This house is going to be so incredibly quiet! Will need even more coffee than usual.  

Bitter Pill

Supplements supplements everywhere....

I am really struggling with getting Natey to ingest all of these supplements.  There are soooo many and of course being that he's under 3 yrs old, pills are out.  That leaves injections (do that), powders, chewables, and liquids.  Kids with autism notoriously have very picky palates and Natey is certainly no exception.  Changing his diet last year was hell, he boycotted food for the first few days, which made for a very pleasant little boy. And now that I got him straightened out and eating the allowed foods, it's time to reintroduce others slowly, and he's not having it.  Thank God we have a dog to clean up all the food that he throws.  Right now his list of foods is as follows:
almond flat bread
almond butter
almond flour coated chicken nuggets
any type of chicken
meatballs (which are slightly illegal due to gluten-free bread crumbs, but screw it)
strawberries, but only when very ripe
dried mango
dried banana
scrambled eggs
bacon
occasionally cooked carrots
gummy vitamins
white grape juice.

Yep, that's all of the "legal" foods that he will eat.  Other things that he would eat if I let him (I know this b/c I watch him knock Jack down to get to them):  fries, fish sticks, ANY sweet, all cereals, veggie booty, any chips, popcorn, and basically any other junk he can get his little paws on.  As time goes on, it is getting harder and harder for me to deny him.  I just want him to be happy and I really feel like I am depriving him of one of the few things he really seems to understand and enjoy (food).  Mommy guilt comes in all shapes people.  You give too much, you take away too much.....can go either way right?  So as I said, I have been trying to reintroduce some things, and failing miserably.  All other fruits and vegetables go flying right away- but I keep trying because of that whole idea that it takes multiple exposures for the child to accept something.  Yeah, so far it's just not happening.  I have tried to change his beverage of choice as well- he used to love all milk, even coconut milk when we removed dairy.  I have tried every variety of coconut milk this time around and it gets immediately spit out.  Ugh.  Which brings me back around to the supplement issue.  I am fishing for ideas on how to make this happen...I have divided them up into 3 different drinks throughout the day, but sometimes he'll drink it and sometimes he won't.  I will be honest....I sure as hell wouldn't drink it- have ya tasted curcumin lately?  In grape juice?  Ughhh....I am lucky he takes any of it at all.
So right now it goes like this:
1st drink:
curcumin 300 mg (powder)
P5P 1 cap opened
folinic acid 1 cap opened'
gummy vitamins right now, but I am trying to work in super nu thera liquid (cherry flavored) b/c it has P5P already in it, thus eliminating the need for that capsule.  It also has vitamin levels that have been shown to be beneficial for kids on the spectrum.  He's not digging it, and he loves the gummies.  Better than nothing I guess

2nd drink:
grapefruit seed extract 6drops
b-complex drops, 1/2 dropper
probiotic cap opened

3rd drink:
curcumin 300mg (powder)
zinc, 1/2 cap opened
naltrexone, 3cc
calcium powder (this he really hates)
fish oil- takes it separately and loves it (barleans swirls)

I have tried chewable probiotics and calcium lately but he won't do it.  They taste good, as I have tried them, but I think it's the texture.  He rejects half of these beverages I listed above, partly, I am sure, for taste, but I can't imagine the powder texture is pleasant either.  Plus, half the time it clogs the no-spill valve on his sippy cup and then the cup starts leaking....it's a mess.  I have tried making smoothies- he hates them.  So I am at a loss and begging for suggestions/advice. Please message me if you have something to offer!!!  

Mommy Victory of the Week.

 I must gloat....and share some information that might be useful to other autism parents.  Nate has been on enhansa (enhansed absorption curcumin) for about 6 weeks now.  We have new words, we have more eye contact, we have naughtiness :).  Now, he has also started on a higher dose of B12 injections, P5P, folinic acid, and naltrexone.  And yes we introduced them a week apart.  A week is really not enough to concretely determine if something is effective so I find myself questioning which thing is working.  Solution?  For now he stays on all of it.  Anyhoo, as you can imagine, this is quite expensive.  And I have no doubt that at our next visit, Dr. Brenner is sure to add more.  I went to the online pharmacy who sells enhansa to reorder....www.leesilsby.com.  This is a compounding pharmacy in Ohio that specializes in kids with autism.  They have their own supplements and special formulations of different supplements that are easier to administer to kids with picky palates- such as creams, and various transdermal formulations.  I was on the enhansa page and saw a little note at the bottom stating that parents should check to see if this drug would be covered by their individual insurance company....it's rare, but it does happen.  So I called the pharmacy to request the NDC (national drug code) as with all medications there are multiple different names and who knows which one the insurance company has it listed under?  (see my job comes in handy ALL the time).  I then called our drug coverage plan.....get this!!???  We have been paying approximately $45 a month for the enhansa out of pocket.  With a simple little thing called a prescription (which our amazing pediatrician called in within hours) a 3 MONTH supply is.....wait for it....8 bucks!!!!  I swear I was on a natural high for the rest of the day.  NONE of the boys other supplements (other than the B12) are covered in any way shape or form.  The specialized multivitamin is $60 a month, the probiotic is another $60, Bcomplex drops are $24, Calcium chewables are $17, folinic acid is $15, P5P is $17, zinc is $11, naltrexone is $6, fish oil is $20, grapefruit seed extract $9 (this lasts for like 6 months though), B12 is $35 with insurance, oh and Mg sulfate cream is $18.  Holy crap.  This is the first time  I have really allowed myself to itemize this.  That's almost $300 dollars a month in supplements a month for those keeping track, and that's just Nathan.  Admittedly, Jack is not on as many supplements, but still.  We are talking a car.  So I will take $45 a month back in my pocket, thank you very much!


This, ladies and gents, is why, when a child is diagnosed with autism and parents ask, "what do we do?" a frequent response is "how much money do you have?"  I pray all of the time that someday these treatments will be acknowledged as viable medical treatment for autism, and that insurance will start to cover more of them. I mean, they cover birth control, acne medications, Viagra......to me, these are all quality of life medications.  These supplements help our children's brains function at a higher level.  Hmmmmmm.......what's wrong with this picture?