Thursday, 31 January 2013

Explain It To Me Like I'm a Two Year Old...

I got the "draft" copy of Jack's "new" IEP today in his school folder.  The meeting is in a week, and parents have to get the materials ahead of time.  Fine.  I didn't want to look- the fact that it even came with the disclaimer that "not much will be different because Jack is going to be reassessed" should have tipped me off.  And this is true, next Thursday I will be signing consents for this reassessment- his "label" thus far has been developmental delay, and this will be changed to autism.  OK fine.  But I looked anyway.

Really?  After all I have heard and been told this year, the talk of the weakness of his grip and his sensory issues, he still only needs 3 30 minute OT sessions a month??  They did increase his special education time, which was an hour a week.  They increased it to 2.5 hours a week.  Out of 35 hours in school.  When I already know that he has been having an aide an hour a day and this is not adequate- this per his teacher.  So this increase doesn't even cover what he's getting.  How does this make sense??? Someone please explain this to me....

Once I sign consents for assessments they have 6 WEEKS to complete them.  And then when they draw up the new IEP they have 4 weeks to implement the changes.  I am not a mathematician, but doesn't that take us almost to the end of the school year?

Wednesday, 30 January 2013

Momnesia

Does anyone else have this issue?  It used to be a common thing for me when Jack was an infant.  He was such a rough sleeper, from day one.  Our first sitter famously lost 4 lbs the first week she cared for him because she walked him so much.  When he was little she would come in in the morning and it would be like shift change report, when he last ate, pooped, how was sleep.  I found that after a certain point, the answer about sleep was honestly "I don't know".  I started having real issues remembering what happened all night long.  I think it was exhaustion partially and probably my body's defense mechanism kicking in.  If I remembered that 8 months in he was still waking up hourly, would I ever have another child??  I would wake up in the rocker, on his floor, in our bed with him on top of me and I would have no idea how I had gotten there.  Sound familiar to anyone else?

It's happening again.  I am trying to keep track of his wake ups on my iphone app.  I realized this morning that I have absolutely no idea what happened last night!  I know he woke at 10:30 pm but was easily put back to sleep when I rubbed his back.  I know that I woke up at 6:30 this morning with him in our bed, and that the blanket I use when I sleep at the foot of his bed is spread out on his bed- so clearly I was in there at some point.  How many times?  Not a clue.  Probably a blessing, no?

Tuesday, 29 January 2013

Waiting....

All new supplements are on board as of last night.  We started transdermal glutathione for both boys last night, which is the last one.  For now anyway.  It's just a cream, but glutathione is one of the newer and supposedly, more effective treatments for kids with autism.  Some info:

http://www.tacanow.org/family-resources/detoxification-glutathione-autism/

Detoxification, Glutathione & Autism

July 7th, 2010
Disclaimer: Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources, and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. Nothing in this document should be construed as medical advice. Always consult your child’s doctor regarding his or her individual needs.
Introduction
In the autism community over the past few years, glutathione, detoxification, and all related methylation issues have been the “hot topics” at many of the Defeat Autism Now! (DAN!) conferences, other conferences like Autism One, and with many of the current medical practitioners treating autism. There are also some recent, excellent studies by Drs. Jill James and Richard Deth on this highly debated and important topic as possible treatments for children on the spectrum.
The process of the methylation and detoxification are highly complex processes and still require more research. Treating children with autism with glutathione to promote detoxification is not a perfect solution or cure for autism. It could be an important piece of what may not be functioning properly in children with autism spectrum disorders.
This document attempts to provide some basic information about glutathione, reading sources, and options available for your review. It has been written by a mom of a child with autism with no credentials or medical training. I have simply provided reading materials that have helped me, research references, and personal experiences with my child. Please work with your doctor on proper testing and the unique needs of your loved one.
Overview: Glutathione and Its Potential Uses
www.drlera.com/specialty_formulas/Glutathione.htm
Glutathione
Aging
AIDS
Alcoholism
Atherosclerosis
Cancer
Chemotherapy recovery
Dental fillings
Detoxifier
Drug addiction
Emphysema
Glaucoma
Hepatitis
Hypoglycemia
Kidney disease
Liver disease
Liver cancer
Lungs
Mercury poisoning
Parkinson’s disease
Respiratory problems
Smoking
Tuberculosis
Glutathione helps defend the body against damage from cigarette smoking, exposure to radiation, cancer chemotherapy, and toxins such as alcohol. As a detoxifier of heavy metals and drugs, it aids in the treatment of blood and liver disorders.
Glutathione protects cells in several ways. It neutralizes oxygen molecules before they can harm cells. Together with selenium, it forms the enzyme glutathione peroxidase, which neutralizes hydrogen peroxide. It is also a component of another antioxidant enzyme, glutathione-S-transferase, which is a broad-spectrum liver-detoxifying enzyme.
Glutathione protects not only individual cells but also the tissues of the arteries, brain, heart, immune cells, kidneys, lenses of the eyes, liver, lungs, and skin against oxidant damage. It plays a role in preventing cancer, especially liver cancer, and may also have an anti-aging effect. Glutathione can be taken in supplement form. The production of glutathione by the body can be boosted by taking supplemental N-acetylcysteine or L-cysteine plus L-methionine. Studies suggest that taking glutathione combined with another boosting supplement may be a better way of raising glutathione levels rather than taking glutathione by itself.
Glutathione is not technically an amino acid: however, due to its close relationship is normally grouped with the amino acids. Most glutathione is found in the liver where it detoxifies many harmful compounds to be excreted thru the bile. Some glutathione is released directly by the liver into the bloodstream where it helps to maintain the strength of your red blood cells and also protecting your white blood cells.
Glutathione can also be found in the lungs and in your body’s intestinal tract system. It is required for carbohydrate metabolism. Glutathione also appears to have anti-aging effects by aiding in the breakdown of oxidized fats that may contribute to atherosclerosis. As we get, older glutathione levels in the body decrease and this can speed up  the aging process. Thus, glutathione supplementation is useful in preventing this from occurring.
Glutathione deficiency maybe indicated by: coordination problems, mental disorder, tremors, twitching, nervous system disorder, and difficulty in balancing. Currently, the deficiency is believed to be caused by lesions in the brain.
Latest Research on Glutathione
Neurotoxicology – Volume 26, Issue 1, January 2005, Pages 1-8
*Thimerosal Neurotoxicity is Associated with Glutathione Depletion:
Protection with Glutathione Precursors * *S.J. James, William Slikker III, Stepan Melnyk, Elizabeth New, Marta Pogribna and Stefanie Jernigan *

1 Department of Pediatrics, University of Arkansas for Medical Sciences and Arkansas Children’s Hospital Research Institute, Little Rock, AR 72202, USA
2 Division of Biochemical Toxicology, National Center for Toxicological Research, Jefferson, AR 72079, USA
Abstract
Thimerosol is an antiseptic containing 49.5% ethyl mercury that has been used for years as a preservative in many infant vaccines and in flu vaccines. Environmental methyl mercury has been shown to be highly neurotoxic, especially to the developing brain. Because mercury has a high affinity for thiol (sulfhydryl (single bondSH)) groups, the thiol-containing antioxidant, glutathione (GSH), provides the major intracellular defense against mercury-induced neurotoxicity. Cultured neuroblastoma cells were found to have lower levels of GSH and increased sensitivity to thimerosol toxicity compared to glioblastoma cells that have higher basal levels of intracellular GSH. Thimerosal-induced cytotoxicity was associated with depletion of intracellular GSH in both cell lines. Pretreatment with 100 /?/M glutathione ethyl ester or /N/-acetylcysteine (NAC), but not methionine, resulted in a significant increase in intracellular GSH in both cell types. Further, pretreatment of the cells with glutathione ethyl ester or NAC prevented cytotoxicity with exposure to 15 /?/M Thimerosal. Although Thimerosal has been recently removed from most children’s vaccines, it is still present in flu vaccines given to pregnant women, the elderly, and to children in developing countries. The potential protective effect of GSH or NAC against mercury toxicity warrants further research as possible adjunct therapy to individuals still receiving Thimerosal-containing vaccinations.
Note: I am sure there are many more sources for glutathione and similar products. These are the products I am familiar with. It is important to find sources that meet dietary restrictions (gluten-free, casein-free, dye-free, additives-free, etc.). Sometimes these additives can mask any benefits of glutathione supplementation.


OK, so I have been waiting to start this for awhile- we needed some lab results back- Jack has unusually high mercury levels. and they both show deficits in their bloodwork related to some of the information above.  I have also been looking forward to the transdermal nature of the supplement- no begging a kid to swallow it, no shots (for now).  Good stuff.  1st dose with pj's last night.  Why oh why does EVERYTHING cause sleep disturbances for Jack.  If it's an option as a side effect, you can bet he's gonna have it.  He did not just have sleep disturbances last night, he was talking in his sleep, not in English, combative, running into the hallway, sitting down and screaming at nothing.....it was scary.  Yet, I don't want to give up after one dose, this is something that could truly help him.  So I gave him another dose this am and have noticed nothing out of the ordinary during the day.  I guess my next step is to try it again tonight, see if we have the same problem.  If we do, I guess I could try applying the second dose several hours earlier, or if need be, double dosing in the morning.  I just hope we see something positive come out of this.  The person who wrote the article for TACA also stated this about their personal experiences:

Some Personal Experiences with Glutathione for One Child

My son’s medical tests demonstrated over several years along with many types of tests that he had a glutathione deficiency and other issues. Over the past four years, we have found that glutathione treatments have greatly assisted him. I have attempted to outline some of our findings for one case: my son’s.
What We Tried:
  1. We tried Oral Glutathione; it resulted in a tremendous yeast outbreak.  We also found studies that glutathione supplementation did not survive the digestive process to yield results.
  2. We tried Topical Glutathione; it caused a bad rash and undesired behaviors (this is an understatement!). At the time, there was only a soy-based topical glutathione Рtoday you can acquire cr̬me without soy or other allergens.
  3. We tried an initial dose of IV Glutathione: 250 mg (really an IV Push; 5-10 minutes)
    1. Some hints: We brought a portable DVD Player along, and prepared his arm with a big glob of EMLA cream prior to infusions. At the time, Jeff was 5 years old and around 40 lbs. The first treatment was in Fall 2002.
  4. Another type of glutathione administration is through a nebulizer.
I would love to know what her child's undesired behaviors were.  I really would.... 

Friday, 25 January 2013

Friday Funny- Working from Home

People often ask me how I am able to focus on my work with these two little boogers running around here.  Well, first and foremost, I am the champion of blocking out noises after over 5 years of doing it.  Also, there's school- I love school.  But really, there's just nothing like the amazing atmosphere and priveleges associated with working from home.  Oh and the facilities, you just can't compare, really you can't. 



 This is the nastiest, smelliest, most unorganized area of our home- this is where I work :).  If you look closely, you will see the beer bottle my husband left when he came to check on the furnace the other night.  All those papers?  My job is completely paperless.  Those are the kids medical and school records.  Ahhhh.....my space.    And just in case I get bored, there's LOTS to do:


I can work out....if I can clear all the laundry and boxes away.

Or more likely, I can do laundry....just have to make sure I turn off the washing machine before I make a call.  The really convenient thing about this particular office space is that with the HVAC directly behind me I have a TON of white noise, and I can barely even hear the kids....even when they scream (kidding)






Then of course there is the office staff:


The book keeper



Tech support (he's on his break)
And of course, security (he keeps the mailman and UPS man at bay daily- thank God for that)

If all else fails, there is an incredible sense of team spirit amoung the staff:


Happy Friday everyone!!!!!

Thursday, 24 January 2013

Please Let This Be It!!!

This is my first full week of charting the boys' behaviors, issues, supplements and it's going pretty well so far.  I think I have something like 64 data points to enter every day, but since it's on my phone which I always have nearby it's pretty simple and not time consuming at all.  This is also Jack's second full week off of intuniv and first full week on vitamin B12 shots.  This evening I put the EMLA cream on his bum and told him we were going to do the shot while he was awake.  For obvious reasons I am no longer willing to give the shot in his sleep and risk him waking up AGAIN.  He seemed ok with it until the moment came.  Then in the midst of the shot he jumped away,  causing the needle to come out prematurely and a small amount of the medication to leak onto his skin (no big deal).  He looked at me in horror "you are making me bleed everywhere, my bottom is broken!!!!".  Folks, methylocobalamin is red in color, there was not a drop of blood.  I explained this like 20 times, he's not convinced.  This kid is obsessed with his blood anyway-  He spent hours in the bathroom last week because his lip was chapped and bled once- he just sat in the mirror observing it.  I didn't object, it was quiet time, ha.

Anyhoo, that's not the point of all of this.  Here is the point- I have been tracking Jack's sleep this week and the number of times he wakes up.  Monday was 6 times, Tuesday was 2 times, last night....wait for it....only ONCE!!!!  Everyone take a second before you pass out tonight to send some fairy dust our way----I really hope this trend continues!!!

Mundane But Happy

I have basically finished Nate's room, and because I am too stressed out to write about anything of substance this morning I thought I would share.  I repainted quite a few of his nursery decorations including his letters and the little peg shelf.  Kinda proud of it :)













I love this frame and I love love love this picture of Natey.  Natey is strong and has endured a lot more than many kids his age.  Jack as well.  Our family is strong.   I am strong.  Last night I actually had someone tell me that I am not strong enough.  A year ago this would have absolutely devastated me.  Now I know this to be a crock of shit.  There are different types of "strength".  I AM strong, I choose to maintain my character and morals, push through what I need to and stay out of drama that does not pertain to me.  Sometimes this is the most difficult path, but if one has never taken it, then I guess they just wouldn't know that.

Wednesday, 23 January 2013

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.....

Tuesday, 22 January 2013

Those Who Wish to Sing....

I was just browsing on etsy looking for some fun things for Nate's big boy room, which is almost done- it is brown and blue with stars and monkeys in it.  I know.....sounds kinda odd, but it all does come together I swear.  Those are two things that I am sure that he likes, so that's how it's gonna be :). 

I have been focusing on this aspect lately because I have been frustrated with what feels like yet another stall in language development for Nate.  Say some prayers for him- I hope he is just getting over being sick, adjusting to the new supplements, etc. 

Anyway, I saw this picture on Etsy, totally doesn't go with the decor in his room, wrong color, wrong theme, but the quote just struck me as Nathan through and through. 


Nathan is singing his song, it's just not quite the one I wanted or was expecting.  Time to take a deep breath and take another step towards acceptance.  This picture may end up in his room after all...

Sunday, 20 January 2013

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


Saturday, 19 January 2013

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!

Road Trip

Yes you read that right.  Call it cabin fever.  Call it insanity.  But if I don't get out of this house PRONTO things are gonna get ugly up in here.  Don't worry, being my little nurse self I am not planning on exposing any of you to the flu that I have affectionately nicknamed "there are not enough tissues and advil in the world". 

I have devised a plan.  It may not sound like much to you, but to me it sounds like the road to peace.  I plan to install our portable DVD player into the car, and take off with the boys at about 11am.  Where is our glamorous destination you ask?  Well, first we are going through the starbucks drive thru.  I don't even really feel like coffee right now (gasp), but it's a matter of principle.  Then we are going to hit the Chick FilA drive thru- and if Jack wants a milkshake then I say have at it!  Then we are going to drive for awhile.  No where exciting, we'll probably circle the airport terminal a few times for old time's sake, since that is where we spent quite a bit of our time the year Nate was born.  Maybe we'll even park and watch the planes for awhile.  Or cross the bridge to watch small planes.  In terms of our destination....

I DON'T CARE as long as it's OUT!!!!!!!!!!!!

Friday, 18 January 2013

It's Official: My Child is a Freak of Nature



And I mean that in the best way possible.  Does this child look "sick"? This child who sleeps less than anyone in the house and developed symptoms of this flu last?  Nope, he doesn't.  The kid has been on hyperactive hyperdrive ALL DAY.  It started at about....4:30am.  I had put Jack to bed in the master bedroom with daddy last night and I was sleeping in Jack's room- I needed one night of sleep.  Ha.  So I hear Jack cackling and I go in- he keeps insisting to John and I that there is a green hummingbird by our back fence.  Keeps wrenching up our window treatments to "show" us- nothing.  I immediately took his temperature and it was fine.  Guess who else is off tamiflu now?  Like he even needed it  .  I think he's coughed like 5 times all day.  He went on and on about this bird- at about 1:30 this afternoon I ran into John getting himself and the boys bundled up- what the heck are you doing?  He had convinced John (or John had just given up fighting- I vote B) that the bird was really out there and dragged him out to look for it.  Now he says it flew away.  That's the most logical thing he's said in this whole saga.

I am so glad that Jack appears to be getting over this illness so quickly- only problem is we can't keep up!  Nate is lying on the floor groaning, John is coughing up a lung and I am walking around with my eyes at half mast.  And Jack is a human pogo stick.  Swear to God if this kid doesn't sleep tonight I might not be here tomorrow.  It is time to SLEEP.

Flu in Aisle Two!

Sigh, sigh, sigh, and then cough, cough, cough.  We have followed medical advice and not given the flu shot to the boys the past few years.  In the pediciatrician's eyes the risks outweigh the benefits and I don't disagree.  Except maybe right now I do- we all 4 have been tested and are flu positive.  Lemmee tell ya, when they tested me on Wednesday at my PCP and it came back positive, the NP walked back in wearing a mask, handed me one, and then ushered me out the SIDE door.  We all got Tamiflu- and about 30 minutes after I took the first dose, I was "raging".  Ridiculous anxiety, pacing the floor for hours- I have been deemed allergic to Tamiflu now. 

Family bonding?  Not so much.  Let's call it family "binding".  Keep your fingers crossed this passes soon- I have cabin fever already and I. MISS.  SCHOOL.  Jack of course, is running around like a maniac- isn't that how everyone acts when they are sick???

Sunday, 13 January 2013

Feeling Lost

This will be short and sweet because with a migraine and complete lack of sleep I don't have energy for much more.  Met with the advocate this morning and am completely overwhelmed.  With two boys on the spectrum whom you love more than life there is never enough money, enough time, or enough resources.  That being said, this is a step.  I have to find a way somehow for that to be enough for right now.  The advocate has a wealth of knowledge and many ideas, certainly much to add- these are the positives.  The negatives?  I feel completely inadequate as a mother and advocate for my children.  There is so much I don't know, so many directions I am just not aware of.  The boys' IEP's are completely lacking and I haven't known enough to fight for the right things.  Just when you think you are making some progress, you feel like you are told you are 30 steps behind where you thought you were.  It's just disheartening.  It also reemphasizes our need for help.  So help is what we are going to get. 

Friday, 11 January 2013

Ready to Drop

That's what I am about to do- exhausted is an understatement right now.  Jack has continued to have sleep issues, which we are working on, but long story short I have basically slept at the foot of his bed for the past 2 weeks.  I don't want to lie beside him because I am trying to enforce the whole "this is your bed thing", so I keep ending up at the foot.  My back-oh boy.  I should be asleep right now, but sometimes I just need to unwind, and thanks to you lovely people, debrief.

We didn't have Jack's IEP yesterday.  I postponed.  And hired an advocate, who we are meeting with on Sunday.  I am anxious to get services in place for Jack, I really am.  I just feel that no matter how much I prepared for Thursday's meeting I would be walking in with a huge disadvantage- I would not know what Jack is entitled to, what the state is required to provide for him.  How can I fight for something when I don't know what a reasonable request is?  I could read until I was blue in the face and do my best, but I came to the decision I did for one main reason.  I am NOT willing to risk Jack's education while I "learn".  This is not a trial and error situation for us- if we get the right services in place now, Jack has the potential to go so so far.  If it takes a year or two, we could be faced with a completely different child who is too frustrated and intimidated by school to perform to his potential.  Nope.  Not gonna happen.  Or, I could get so frustrated with the system that I would want to send him to a private school?  The advocate is MUCH more cost effective than paying private school tuition.  So that's the story on that.

Today was an action packed day.  Nate and I had an appointment for his More Than Words class at 8:30am to be filmed doing directed play.  Basically I use the techniques they have been teaching in class and demonstrate how they are working for Nate.  And they are working for him to a certain extent.  Yes, he is still the furthest behind of our group, but he is progressing, and that is what I choose to focus on.  So that was about 45 minutes from our house and took about an hour.  When we finished, we swung back home, picked up John and Jack and headed 45 minutes in the opposite direction for our follow up appointment with the developmental pediatrician.

I am getting used to the barrage of new interventions that are flung at me with each visit.  The rapid fire questions- what improvements did you see with this, how much, how long, stand on your head, pat your stomach, etc.  I think I'd better start keeping a calendar with start dates and daily observations.  Otherwise it all starts to run together.  I did remember to ask him if it was ok to STOP things that don't make a difference and he said that's fine.  Which is a good thing because a.  this is what I have been doing and b.  if I didn't, each boy would be on about 1000 things by now- try mixing that in juice!  Decisions made today:
transdermal glutathione for each boy (will explain some other time- brain too tired at the moment)
vitamin C
inositol for Jack
increased GABA for Jack
add carnitine
add miralax for Jack
add fluconazole for both boys- suspected continued yeast issues
and last but not least---add methylcobalamin injections long term for Jack

Well shit.  I'll get right on that.  The most overwhelming intervention is the shot for Jack.  I did it for a week with him in early December to confirm  he is a "responder" (he is- we all slept that week praise God).  I used EMLA cream so his bum was numb.  We talked about it for days.  The first time I gave him the shot he was mad at me for days.  He was so anxious about "the event" that he could talk about nothing else.  So we talked, and I asked him if he would feel better if I put the cream on at bedtime and gave him the shot while he was sleeping.  He said yes.  And he seriously slept through it.  But it's a complex process- no matter which bum cheek I put the cream on, he seems to sleep on that side.  If I don't get the shot in during his first REM cycle then he starts to wake up.  So I need to do this 3 times a week for approximately, ummm, 3 years?  Hopefully as he gets a bit older the process will be simpler?

While all of this leaves my head spinning, and the fact that I had to come home from this and put in a half day of work on about 3-4 hours of interrupted sleep made me feel, yes, like I was going to drop dead, I am very grateful.  We have more to do, yes, but at the same time, there is more we can do!  I am watching several families who are dear to me right now go through some very difficult, heart-wrenching times with their children.  My heart is breaking for them.  Watching their strength brings me to a place of peace with my own situation.  Yes we have challenges, but not life-threatening.  Noone is in the hospital, and these interventions are to improve the boys' lives, not save them.  They are ok.  Physically, they are ok.  And that is everything.  Every once in awhile in the midst of this swamp of sometimes seemingly random interventions, I need to stop and remind myself of this.  My boys are ok. 

Thursday, 10 January 2013

Monkey Business


I posted the other day about the "magical toy" and my constant quest to find something that Nathan will love to play with.  I have also mentioned that he loves to play with things that swing, and particularly tissue paper.  John and I have been observing him and have noticed as of late that he is not just swinging these pieces back and forth.  Our first clues were his repeated frustrated screams.  I will confess that I assumed his brother was tormenting him several times (he makes the same noise when this happens), before I saw what was going on.  He was trying to link tiny pieces of tissue into a chain.  If you think about it, this is a really complicated thing to do- major fine motor coordination not to mention the completely unpredictable nature of tissue to begin with.  And lots of focus too.  We started thinking of linking toys, trying to think of one that would swing.  That's when it hit us....

Barrell of Monkeys!!!! 5 bucks on amazon- so they came last night.  Look at this!!!!









And I saved the best for last.....

Victory!!!!!!!

Tuesday, 8 January 2013

Stepping Into the Ring

We have had a relatively event free month.  All done.  First of all, Jack has not slept more than an hour and a half in a row in the past week and a half.  He has even taken this a step further and will not sleep AT ALL unless I am in the bed with him.  Last night I woke up about 10 times with him.  At one point I found him sitting ON ME reading a magazine. 

We have his IEP meeting on Thursday.  I am a nervous wreck.  I know he needs a full time aid.  I have no idea how to accomplish this.  I am embarassed to say this- however- I need an advocate for him.  He does not have discipline issues, he is not a "risk" to the school.  I need to prove to the powers that be that he needs this aid for attention issues and motor issues- to accomplish his educational goals.  His teacher freely states that he is falling behind academically because he cannot focus on his work.   I have letters from his pediatrician and his private OT.  I have samples of his work from the past few months with and without the aid.  I know this is not enough.  I am doing all the research I can, and unfortunately all of this research has told me I need the advocate.  That I am not going to be listened to.  I am a basketcase.  Advocates cost thousands of dollars. 

We also have our next appointment with the developmental pediatrician this Friday.  Lab results, more tests I am sure, and more meds.  Oh, and before that, Nate and I are going to be videotaped "playing" again.  So that should be fun.  We also have the 8 hour day at the SEED study coming up. 

Thus my post of facebook this morning:

"I have decided I no longer want to be an adult....if anyone needs me I will be in my couch cushion and bed sheet fort....coloring."

Awesome




Wednesday, 2 January 2013

The Magical Toy




Every parent of a child with autism is looking for it.  In our case, so is every grandparent and babysitter too.  That toy that will help the child break through- that will be so fascinating to the child that it will trigger some appropriate play. 

Let me try to qualify this.  Remember when your children were babies? That first Christmas where all they were really interested in was the wrapping paper, ribbons, and boxes?  I would die for Nathan to get to that point again.  This year he grabbed tissue over and over again from the top of one of John's gifts and shredded it.  Then he found one ribbon and shook that for awhile.  Completely ignored all the gifts.  For the most part he focused on putting 2 snowflake ornaments together and watching them dangle. 
Exhibit A

This is a very common issue in kids with autism.  Lack of "appropriate" play.  Sounds like a load of crap right?  Kind of like "failure to progress" in a labor and delivery situation?  It's not though.  Put a toy in front of a neurotypical kid and they might need a little guidance to figure it out, but the point is that the would be interested in doing so.  Put the same toy in front of a child with autism and who knows what you're gonna get.  With Nathan he would likely ignore it- his main interests are leaves, string, balloons, pine needles, toilet paper, and paper towels.  If you try to engage him in the toy he will cry and try to get away.  The only person I have seen truly engage him in play appropriately has been the educator who just started coming out to our home in December.  The one who is an "aide" on Mon and Tuesday and a kindergarten "advocate" for the school board the rest of the week (she has her master's and does the aide gig because she loves it).  The first time she visited, my mom, the sitter, and I were all observing.  We all would like to drink her blood or at the very least get an in depth tutorial.  Ooops, was that inappropriate?

If you put that same toy in front of Jack, especially when he was little, he would find a way to spin it.  If that wasn't happening, then he would turn it over and examine how it was put together.  Find the screws, etc.  We used to joke that clearly he would be an engineer- still wonder about that.  We spent about 9 months in weekly "play therapy" with Jack.  I will never forget it as it was one of our first therapies after his diagnosis.  We did OT on Saturday morning, and then I would drive Jack 45 minutes to this attorney's office where the child therapist held her Saturday hours.  She lugged a million toys with her every week.  I would watch her try and try again to get Jack to engage in imaginative play.  He did not want to make characters interact with each other.  Eventually she did help him do this- even if it was a cake and a banana talking to each other.  Hey, we're not picky here.  I used to stress so much about this "deficit" that Jack had- God it sounds so stinking minor now.  If this was the biggest issue with Nate we would be coasting right now. 

So back to the toys.  I am constantly on a crusade to find that "magical toy" for Nate.  In order to get him to do a puzzle I basically have to sit him in my lap and cross my legs over his- ie, restrain him.  To get him to pay attention to any toys, they have to be in his room, the door has to be closed, and there must be no other entertainment option for him.  If he engages with something for two minutes, it's a victory.  This is of course besides his beloved string.  He could do that for hours.  I have found myself on my hands and knees dangling a piece of string next to his in a desperate attempt to get him to notice me/interact with me.  It does work sometimes. 

We seriously should own stock in Melissa and Doug, Plan Toys, etc.  I think we might be missing about 10 Melissa and Doug toys from their collection.  And our family has been so so considerate in continuing this trend- every gift Nate received this year was something that would aid in his development.  Awesome.  We haven't opened over half of them, but we'll get to them.  I don't want to bombard him, I want him to focus.  After his birthday, I hit amazon again, hoping to find something he would really like.  I thought I had done that for his birthday, but came up with a big zero.  Not a flicker of interest in anything.  So I found these:


Nate LOVES movement- thus the string, etc.  He loves water.  He is the only kid I have ever seen that loves to have water poured over his head to rinse his hair during a bath.  Jack screams like a banchee and shakes his head like a dog.  Nate stands up, squeals, and moves closer.  So even though these blocks were almost 40 bucks, there were only 6, and I couldn't know if we would be successful, I went for it.  It is the only toy he has truly paid attention to from Christmas so far.











He loves to shake them and watch the water move.  He loves to look through them and see everything around him change color.  And occasionally I can sneak in a brief period of building.  Which is the key- the developmental play has to be "worked in" to what they want to do right?  Luckily, my efforts are rewarded with amazing moments like this.....