Mommy and Natey Time

OK, the first part of this will be whining, but I'll get it over with as quickly as possible ok?  Earlier this summer I had scheduled myself to be off of work all week in case the funding for Cisco Center didn't come through.  Then it did, hip hip hooray!  So in a shocking and selfish move, I kept two days all for me- planned to work this mon, tues, wed, and then take off the rest of the week to get organized for the school year, buy school supplies and consign stuff that doesn't fit anyone anymore. 

Well first, I had to schedule a study appointment for Jack- there goes Friday morning, so John and I just decided to get the boys early from Cisco and take them to see Planes in the afternoon ( I am Soooooo excited).  Then last night I hear hacking from Nathan's room; then sneezing, then coughing.  He ended up sleeping with us last night and there was no way I was going to expose a room full of special needs kids to an illness- talk about a death wish, lol, so I kept him home.  There goes Thursday.  I won't deny that no matter how much I love the kids, I was really looking forward to this time.  Like REALLY.  So I was pretty bummed. 

But then Nate and I snuggled in my bed until almost 9, and had a leisurely breakfast, then we played for awhile.  He seemed ok, so we went ahead to the consignment shop and dropped off a bunch of clothing.  And he still seemed fine, so we went to Marshall's, where we spent time just looking at toys and books for him.  He was beside himself with happiness, either over our one on one time or the toys, couldn't quite tell.  When we were done, I plopped him in his seat, walked around, got into mine and turned around to this....

It appears it was the mommy time that he was happy about.  I am sure he was thrilled to be the one and only for a day- this happens so rarely.  This smile completely turned my day around (although honestly, I was already happy).  We went home and ate lunch, and then we both took a nice long nap- he's still sleeping.

 

In a stunning climax, I checked my messages and got the BEST EMAIL EVER from the compounding pharmacy.  They ran Nate's mitochondrial cocktail through our insurance (finally) and guess what???? IT'S COVERED!!!!!!  With a $35 copay.  I. am. ecstatic!!!!!!  So we should be getting a 5 day supply by Monday- the flavor will be chocolate cherry.  If he will take that, then they will send his full prescription.  If not, we'll try another flavor.  Victory is sweet!!! And apparently so are mitochondrial cocktails!

Just Add Water...

And the grocery store.

Jack has been doing pretty well lately.  It “feels” like the meltdowns have been a bit less frequent and maybe shorter in duration.  This of course makes a huge difference for our family and really gives a sense of calm to the household (relatively speaking).  I feel like I have been able to discuss things with Jack to a certain extent, actually reason with him at times.  It’s amazing.  As parents, the smallest things can make a huge difference right?  Like Jack is finally confident in opening his car door by himself.  Just having that one task taken off my plate when getting both boys situated in the car is awesome.  So something like a more relaxed atmosphere in our home has a huge impact.  Jack is also doing very well socially at camp.  There are several other little boys who he plays with every day and he looks forward to going.

Is it the medication?  Is he maturing?  The differences are subtle enough at this point that I really can’t answer that.  I still believe that he is likely on a sub therapeutic dose of his medication, and since he has been holding steady at 19.5kg since May, I don’t think that’s changing anytime soon (once he hits 20kg, the dose will be doubled).  All I know for sure is that there have been some differences.

In typical, comfortable situations.

Today brought that all home faster than you can say lobster. 

It has been raining all day, and on days like this, I love having breakfast for dinner.  And Jack likes making pancakes with me.  So when I went to pick Jack up from camp I decided we would run by the grocery store and pick up a few things so we could make it tonight.  I should have known the minute we stepped outside and Jack saw that it was raining that this was not a good idea.  Little adaptations that we all make to changing circumstances are so difficult for children on the spectrum or really any child with sensory processing issues.  If you tell him to run for the car because it’s raining he stands stock still and screams about it.  When we drove through a puddle he screamed at me to stop. The sound of it and the different feeling of it really bothered him.  He kept telling me he was going to turn the rain into fire.  Why he thinks this would be better is beyond me, but that was his plan.  He couldn’t bear to leave the paper airplane he made at camp in the car when we got to the store but then he had a meltdown because it got rain drops on it. 

It all went further downhill when we went into the store.  He is obsessed with the lobsters, like that is all he can talk about from the minute we go through the door.  I made him wait to go see them until we reached that point in the store.  He yelled when I picked up mushrooms (for me), he cried for gluten free chocolate covered pretzels, (which I gave in to) and then he ran for the tank.  Nothing too bad so far….but then he flipped out because one of the lobsters was missing its claw.  Freaked. Out!  I reminded him that it will grow back (not that there will be any time for that, but in theory it’s true), but then he spotted a lobster with barnacles which also upset him.  Then he saw that one had managed to get out of those little rubber bands they wrap around their claws.  I jokingly said he’s going to escape and that did it.  He started screaming “save the lobsters! Save the lobsters!”  When I say screaming, it’s not an expression, he was literally screaming.  People were staring.  My face was turning bright red as I took deep breaths and tried to pretend this was perfectly normal.  I am a good mom, I am a good mom.  He knows right from wrong, he just can’t handle this atmosphere.  This is what I say to myself at times like these, and repeat, and repeat and repeat.

He was pretty amped up after this, but did ok through most of the store.  He begged for things, but that’s to be expected.  A lady told us she wanted sausage too when we were on that aisle and Jack yelled at her that she couldn’t have it- he thought she was taking ours.

The culmination of this lovely excursion had to be when I opted to go to the self-checkout lane.  The other lanes were swamped and frankly I wanted to get the hell out of there. Jack was very distressed by this situation.  “There’s no one in a yellow shirt, where’s the yellow shirt guy??”  He didn’t like me scanning things (apparently when I make the beep it’s offensive), and he tried to grab everything off of the belt.  If you’ll recall, these belts are extremely sensitive to weight, so consequently, I kept hearing that annoying robot voice telling me to “please return all items to the scanner scale”.  He didn’t like that either.  Lastly, apparently it is also offensive when I bag the groceries- “I’m gonna eat those bags!!!”

He totally lost it on the way home- blaming it on his wet paper airplane again, but the truth is he was sensory overloaded.  Not his fault. 

I rarely take Jack to the grocery store, even with preparation.  For a child that is a sensory avoider, there are just too many unknowns.  Too many things that can set him off.  Nate loves the grocery store.  He is a seeker.  Another good example of this is Jack’s hatred of the rain, walking in the rain, etc.  Meanwhile, I tried to get Nate to stay near the umbrella today and instead he stood away from it, head tilted toward the sky, laughing like a little hyena when the rain hit his face. 

Clearly I let the last week or so of improved behavior go to my head.  It’s easy to forget how sensitive Jack is to sensory input, and thus, changes to his environment.  This was a good reminder.  It’s important to continue taking him places or this will never improve, but planning is needed, and rain OR store would be good, but not both.

Lesson learned.

Medication=Fail! Lessons Learned

I wrote a few months ago about the option of putting Jack on medication for his ADHD like symptoms.  As his pediatrician stated, these symptoms are very common in children with Asperger's- she was supportive of us either way.  Jack's teacher has had the very frustrating task of trying to help him focus in class- and not hyper focus on things like airplanes.  She was supportive of a medication trial as well.  So we took the plunge- hesitantly- so more like we dipped our toes in and have now yanked our frozen feet out of the water and decided to go another route.

There are a bazillion ADHD medications on the market.  99% of them are stimulants, which has always seemed counterintuitive to me.  Our first attempt with medication was to try one of these- focalin.  We started with a low dose and gradually increased.  And here is where the issue lies for kids like Jack- he has major sensory issues right?  These stimulants take these issues and multiply them for these poor kids- my baby wore headphones all day every day at school for nearly a month because of this medication.  And he was sleepy most of the time.  I called the pediatrician and said "NEXT!".  So then we tried the medication in the other 1%- intuniv- a non-stimulant ADHD medication that originally was prescribed for hypertension in adults.  This medication has for the most part been used to enhance the effects of the stimulant drugs, but our pediatrician and others have had some success using this agent alone in Asperger's kids.  One caveat- Jack had to learn how to swallow a pill.

Mommy tried everything (I thought) to aid in this process- we tried pudding, applesauce, ice cream, chocolate sauce, etc.  And mommy also sat and stared at Jack for hours after he had accidentally chewed these slow release pills- checking capillary refill and level of arousal as I was afraid he would have a hypotensive episode.  Guess what worked?  JUICE.  Gulp, gone.  He can take 2 and 3 pills at a time, who knew?

The result of this medication- you have been watching me live it, you just haven't known the reason.  First, Jack has been falling asleep in school multiple times a day.  Second, his OT was in tears at one point because he just wasn't "Jack" anymore (and I agreed).  Third and most disturbingly- the sleep issue.  Jack's anxiety at night was through the roof- waking 10-15 times a night.  I have slept at the foot of his bed more nights than I care to admit out of desperation for a little rest.  And if I so much as shifted like I might get out of bed, Jack woke up and called out for me.  He had other side effects as well, although we can't be sure if it was truly the meds or if it was lack of sleep- he was being mean to the whole family, using bad language, just not himself.  Although when at school and AWAKE he was supposedly focusing a bit better on his work.  I doubt this was actually the case, although I am sure he was quieter because he was exhausted.  I cried UNCLE about 2 weeks ago now and we started weaning him down, and giving him clonidine for sleep.  His doctor warned me to give him only half a tablet initially which would probably knock him out- try 2 full tablets, and then he would stay asleep for about 2.5 hours. 

Last night I finally saw a light at the end of the tunnel.  He only woke up twice.  Granted I fell asleep at the foot of his bed and stayed there- but he didn't wake up this morning until 7:30.  I cried. 

So if you are wondering why I am being so diligent and adding so many different biomedical interventions it is because I want to avoid medications unless absolutely necessary.  They are too rough on Jack.  And frankly, how can I be sure that these ADHD "symptoms" are really that?  It's more likely that his sensory issues, lack of over all core strength and hyperfocus on his  areas of interest are what is causing these issues.   Medication is not the answer for that- school intervention is.  Enter IEP advocate.....

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

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/

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. 

Attention and Asperger's

Jack has been in kindergarten for almost two months.  I talked about my worries to some extent a few weeks ago in http://jackandnatesmom.blogspot.com/2012/10/feeling-like-crappy-mommy.html.  I want to touch on this further as it is becoming more of an issue.  I emailed Jack's teacher the same night I wrote this post, I hadn't heard a peep from her, and I was concerned.  Her response read something like- Jack's attention is quite an issue, myself, the OT, and the special educator are all concerned.  She stated that she is worried that Jack is going to start to lag behind- that she has to constantly move him from circle time because he cannot focus and cannot keep his hands to himself.  She agreed that he is by no means low academically, but said that she can rarely get an answer from him because he is so distracted.  He scores in her "middle level group" but cannot do the written work on his own- she feels that this is mostly due to attention and not his fine motor delays.  Then she called him a sweetheart. 

I knew this was what I was going to hear.  I was praying he had miraculously not been having issues, but I knew better.  It is the ultimate contradiction in terms.  Jack is so hyperfocused on some topics, like his airplanes, robots, hermit crabs, but cannot focus on tasks and cannot sit still to save his life.  I have done my research, and I know that it is very common for a child with Asperger's to also have characteristics of and often be diagnosed with ADHD.  I never wanted to label my child in this manner.  I feel like the diagnosis of ADHD is overused- I will admit that I often thought it was the way parents excused their "difficult children".  God has this experience brought me back down to earth.  There are some instances where I am correct.  And I do still believe that the diagnosis is overused.  But look at Jack.  He has many many difficult behaviors, yes.  Would I love to have a calmer child who doesn't constantly overwhelm me?  Of course.  That is not what is motivating me to seek some type of further intervention for Jack.  I am scared for him- I am so so proud of what a brilliant little boy he is.  He used to astound people at age two by identifying all of his letters and numbers, and naming a plethora of world war II fighter planes.  I have learned so much about bees, hermit crabs, orcas, etc from him.  And much as his fixations drive me a bit nuts, I wouldn't want him to be different- he's my little boy. 

I don't want him to fall behind when he has no reason to.  It would be one thing if he were challenged academically and needed to move at a slower pace for that reason.  But anyone who has ever met my son knows that this is NOT the case.  When he is listening, really listening, look out!  It goes back to what I was talking about with Nate the other day- not only does Jack learn, and thus far keep up with (if not surpass) his peers, but he does it through that "noise"- his sensory distractions, his fixations, his anxiety.  I can't help but imagine what he might be capable of if he wasn't constantly dealing with all of that. 

So I emailed his pediatrician, I forwarded the correspondence with the teacher to her.  She was not the least bit surprised- she may have a heavy patient load, but she has always treated the boys with a great deal of individual attention, has always emailed or called me back on the same day that I reach out to her.  And I feel like she has made the effort to "know" my children in a way that no other pediatrician we had ever did.  Such a huge comfort during this first uncertain and anxiety provoking year.  We are going in this Saturday to sit down and have a consultation with her.  All of us.  I am nervous.  I have a feeling I know what she is going to say- what she is going to suggest.  Meds.  This is a whole other can of worms that I was not ready to open- although I knew that it would come up sooner or later.

It is true when they say that parents know their kids better than anyone else.  I mean, ask my mommy friends, I had Jack "diagnosed" with, what did I call it?  Infantile OCD?  at age 14 months.  I KNEW.  And when I watch him sit and try to complete a task, I can tell that he is struggling really hard to focus. That it's almost painful for him.  Other family and friends, and even doting therapists of his have tried to chalk it up to his fine motor delay but that is not what this is.  I have the benefit of bouncing things off of our in-home daycare provider.  She is older and wiser, and was a teacher for many years.  AND she has worked extensively with Jack on tasks and fine motor activities. She has seen what I have, and experienced the frustration of a little boy held back by his own busy mind.  So I talked to her about this for awhile today- she talked about something I hadn't considered.  What this must do, or will do, to Jack socially.  Now I know that kids with Asperger's are supposedly not as cognizant of their peers, yada yada, and Jack may not yet notice when kids are annoyed at him or making fun of him, but he loves other people and wants to be around them in a way that I am very proud of.  I don't want to discourage this at all- I want to push him toward this.  I love the fact that he came home today and announced that his 3 best friends, Liam, Sean and Dakota had all died long ago and were now long-bone fossils.  A little morose yes, but awesome.  His inability to attend in school may not be effecting this too much yet, but it will.  It will affect all aspects of his life.  I want him to be happy.  So we are left with yet another tough decision.  Am I going to medicate my 5 year old?  I don't know.  I am opposed to it.  However, I am also opposed to making my child's life more difficult than it has to be, and I am also opposed to withholding something that might improve his quality of life greatly because of my own preconceived notions.  So I am going to go into the office and talk to the pediatrician armed with my research and with an open mind. 

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!

New Directions

I had a very insightful conversation last night.  I spoke with one of John and my family members, who also has experience with having children with autism.  I won't go into more detail than that as I do not know if this person is comfortable with it, but needless to say, she also has multiple sons on the spectrum.  They are older than our kids and she was fighting this battle with half the resources I have, and did amazing things for those kids.  I have had her phone number for months, but for some reason I felt very hesitant to call- I am so glad that I did. 

Family commonalities.  In health conditions, in manifestations.  It is mind boggling to me.  And such a huge wealth of information.  I now have several new avenues to explore for the boys.  I am not saying that it is a guarantee that these will also be issues for my kids, but they are definitely areas that I should address, as this is the closest link we have had thus far.  So I will be looking for a gastroenterologist in this area, and I will be asking them to test for certain enzymes, and to look at the yeast/bacteria balance in the gut more carefully.  Asking them to take a closer look at Nate's immune system.  And hormone levels.  Say a prayer for us that some of these things pan out.  Thanks.

Greeno and Vino

I am starting to appreciate these Target gift cards from Hopkins more and more.  This SEED study is no joke, at least once a week I get a new packet in the mail to fill out, and every other week I have an interview of some type.  And I am not just talking a few quick questions, next week's interview is maternal history and I have been told to expect it to take approximately 2 hours.  Two weeks after that is Nate's developmental history- how long is this one?  4 hours.  And then it's in to the hospital for all of the hands on testing- that is 8 hours.  I get now why the gift cards are necessary to make this study happen in any significant capacity. This is a major commitment for any family.  I would still do it for nothing, but I can see how it would be difficult for families to complete all of this with no motivation other than helping humanity and maybe gaining some insight for their families.  That insight, in my eyes, is worth it's weight in gold, but not everyone would see it that way.  So anyhoo, it's nice to see the gift card in the mail when you realize that $20 is really not that much for 2 full hours of data collection from a parent who could be using that time to help their special needs child. I am thinking that it would be a good idea to save the gift cards to use for appropriate developmental toys for Nate, or for equipment his therapists recommend.  You can find almost anything on target.com.  

When I got this packet in the mail, I realized just how much my prenatal care is about to be scrutinized.  Not to mention my health prior to my pregnancy.  And because I breastfed  Nathan, my health status will be followed for the full amount of time I was nursing- which is an additional 15 months.  Of course I did everything I could to be healthy during my pregnancy and while nursing.  I am glad that I can honestly answer that I didn't have one drink or smoke at all during my pregnancy.  Maybe a few glasses of wine while nursing, but I was always careful to pump and dump.  I never took any medication stronger than tylenol or benadryl.  As a matter of fact, when I weaned Nathan and realized I could finally have advil, I was on cloud 9.  Talk about medication naive.  I had to keep reminding myself that if I had a headache, I didn't have to just sit with it.  That being said, when I started to think through my pregnancy, I remembered a few things. For instance, when I was about 20 weeks pregnant, I got a bad case of food poisoning and ended up in labor and delivery twice for IV fluids and IV zofran.  I also took zofran for nausea during my first trimester.  Without it, I would get sick up to 8 times a day- pretty intolerable with a 2 year old and a full-time job. This of course freaks me out- I mean, moms thought thalidomide was safe in the 70's right?  Now thalidomide is used to treat cancer....how about that?  http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001053/  But so far, no significant negative effects are known about zofran, it is supposed to be perfectly safe to use during pregnancy.  http://www.drugs.com/zofran.html  Even knowing this, if I could go back, I would take the pukey feeling. I would take that over this feeling of worry that I caused problems for my baby.  

So on the same day that I got this packet, I got the notice that it is time for Nate's next infants and toddlers meeting soon.  This is his....wait for it....one year progress report (by the way this also makes it my 6 month blogiversary- and with over 7000 views I just want to thank all of you who read- I really appreciate your support).  Can I skip it?  Honestly.  I don't want to go.  I don't want to see sympathetic faces.  I don't want to hear a bunch of half truths and empty reassurances.  I know the score.  He should be a lot further along than he is at this point.  He should be verbalizing much more than he is.  I don't need to hear it from someone else, I know.  This is with 5 days a week of ABA, 2 days a week of OT, constant work and encouragement at home, and wonderful support people within the family.  I can not think of much else we could do other than wake him up and perform drills in the middle of the night.  And I don't think that would be very effective.  Especially when mommy passes out in the middle of it all.  We also need to have the conversation about where he will go in December, when he turns three.  John and I have to attend an information session about our options soon.  Am I scared about this?  Yup.  Because I want them to tell me that there is a circus of intervention available around the corner, and at this point, no matter what is offered, it's not going to feel like enough.  I want an army of practitioners all focused on him, telling us what to do, figuring him out.  Is this unreasonable?  Of course.  Do I care?  Not one bit.  I got a call from the insurance coordinator at the boys' OT last week telling me that almost all of Nathan's covered visits for the year have been exhausted.  I find it absurd that we are allotted 60 visits for therapy- this is not just OT- this is OT, PT and speech combined.  So if he had to have all three, he could only have 20 visits of each per year?  How effective would that be?  I called the insurance company to see how we go about getting additional visits approved.  It turns out that the county (my husband works for the county) HR department has to approve it.  I have never heard of this- keep your fingers crossed that they work with us on it.  I am prepared to throw a fit if necessary, or sick our pediatrician on them.  We started our "speak smooth" supplement 2 days ago- Nate is taking it very easily.  John and I keep joking in the evenings that he is going to wake up tomorrow and tell us good morning.  Wishful thinking.  I am hearing the mom's of all of the kids that were born in the three months after Nate talk about their little ones' first days of preschool, many of them are attending the same school that their older sibling went to.  And I realize how much I have been insulating myself from people with kids Nate's age.  I almost don't even realize how far behind he is at this point because of it.  Self preservation.  I'm not ashamed of it- it's just another aspect of the "new normal".  My kid is not going to do these same things- but as I have said before, that doesn't make his accomplishments any less special.  

So I could have chosen to dwell on all of these issues all evening.  I certainly had enough to think about to pass the time- last night and many many more evenings.  But last night I had more "important" things to do.  Recently, the play group that we have been a part of since Jack was about 3 months old has for all intents and purposes, disbanded.  Most of the kids are in school, and even when they are not, we are all running around like freaks trying to get a million things done.  So we did what we should have, in my opinion, done years ago.  We changed our online schedule from playgroup Fridays to mommy's night out once a month.  On the books.  Mommy time.  Every month.  Praise God!  So instead of completing study paperwork, or worrying about our impending meetings, or insurance hurdles, I went out to a wine bar with 8 of my favorite ladies.  This was not just for fun- this was a necessity.  Mommy's medicine.  Always great to catch up with the people who have seen you in stained sweats, greasy ponytails, with bags under your eyes, and a really BAD attitude and still like you!  Oh, and to put on real clothes and makeup for a change too. 

We all look possessed in this picture....oh well

We clean up pretty well if I do say so myself.  Thanks ladies for a great night- looking forward to "mommy play group" from here on out!  Even though I have a killer headache this morning.

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?