Detailed info for Team Liam's Lions and the Walk Now for Autism Speaks fundraising event

Just to clarify, we are walking as Team Liam's Lions FOR Autism Speaks. All donations via our Team Liam's Lions/Autism Speaks page go directly to Autism Speaks. This is a wonderful organization that provides support, help, information and research for families like ours.
I would have been utterly lost without organizations like Autism Speaks and TACA -just to name a few- which are incredibly helpful resources. Thanks guys!
Click here to reach Team Liam's Lions donation page. Feel free to share!

If you would like to register to walk with us, go to our Team Liam's Lions Donation page and click on the My Team page link, then click on the link that says Join Our Team.
This will bring you to a registration page.
Registration is free!
By filling out the registration page, you are joining Team Liam's Lions and registering to walk with us on on Sunday May 19th 2013 for the Walk Now for Autism Speaks event .

Click here for specific Atlanta Walk Now for Autism Speaks info, such as the date , location etc.

What if you aren't able to walk with us, but still want to help raise funds? Maybe you live far way?Such is the case for a lot of my family. Maybe you just aren't available that day. Or maybe you just hate walking (lol). Thats ok!

When you register under Team Liam's Lions, the site will  automatically create a donation page just for you, which is linked to our team as a whole.
You can choose to use your own page to get even more donations going for team Liam's Lions and Walk Now for Autism Speaks, from your friends and family..... or not! You can set your own goals....or zero that sucka out and call it a day. No big whoop.  :)
If you DO choose to utilize your own donations page to gather funds, and if you reach $150 in donations from your own personal page, you get a free t-shirt. WoooHoooo! lol :)

So many options!
Register just to walk with us!
Or register to collect donations on your own for Team LL AND walk.
Or just collect donations and dont walk!

In the words of The Varsity staff- WHAT'LL YA HAVE WHAT'LL YA HAVE WHAT'LL YA HAVE!?

Either way, you are now registered to walk with Team Liam's Lions!

Hope to see a lot of you there!

Love and Light, 

A

Feel free to contact me directly at amp.atl@gmail.com

Team Liam's Lions and Walk Now For Autism Speaks!

Hi all!

As most of you know, Jason and I are blessed to be the parents to 3 wonderful and amazing children.

Liam is 3, and twins Sam and Daisy are 17 months old.

Our oldest Liam, is on the Spectrum for Autism.

Our participation in Walk Now for Autism Speaks, is just one small part of our family journey through Autism.

You can read more about our journey in this blog:  Adventuresof The Parch Family- Soaring Above the Spectrum, which highlights our highs and lows, challenges and successes and also details our Bio Medical Interventions, Therapies and any other steps we are taking in our fight to give Liam the best possible outcome in life.

Please join us, and show your support to Team Liam's Lions and Autism Speaks!

You can participate by joining our team and walking with us, AND/OR making a donation directly to Autism Speaks via our Team Liam's Lions donation page on the Autism Speaks website.

You can also help by collecting donations from your friends and family to contribute to this cause!

Organizations like Autism Speaks are so important to families like ours for support, information and research.

Please feel free to contact me with any questions.

You can contact me directly at:

amp.atl@gmail.com

-Alex

I am participating in Walk Now for Autism Speaks to help find the missing pieces of autism. Autism is the second most common developmental disorder in the United States affecting one in every 50 children born today. More children will be diagnosed with autism this year than with AIDS, diabetes & cancer combined.  Research is crucial.  Despite some promising discoveries, the cause of autism is unknown and a cure does not exist.  Our goal is to change the future for all who struggle with autism spectrum disorders, and soon.

Walk Now for Autism Speaks is our chance to make a difference in the fight against autism by raising money for autism research and heightening public awareness. Please join me in my fight as I raise money to help fund essential research. You can donate to Walk Now for Autism Speaks and/or join my team online using the links at the bottom of this page. Donations can also be mailed to Autism Speaks using the donation form located on my page or send me a check made out to Autism Speaks.

Thank you for taking an important step in the fight against autism.

  

Donations are tax deductible to the fullest extent allowed by law.

Autism Speaks 501 (C)(3) Tax Id #: 20-2329938

Matching gift program: Many companies provide their employees with matching gifts. Please consult your employer on its matching gift guidelines and attach matching gift forms accordingly.

A helpful link on going GFCFSF

Going GFCFSF in 10 weeks, a must read for those just starting out with a diet intervention, off the TACA website.

Happenings and a current list of Liam's supplements and protocol

A few tid bits of information, just to catch up:

Turns out Dr. Jill will still be covered through our insurance, which is a huuuuuuuuge relief. 

Dr. Jill Dickerson is our wonderful pediatrician. 

If you have had any personal experience in dealing with Insurance companies and the treatment of Autism, you know it can be extremely difficult to find and obtain services from pediatricians and therapists specializing in bio medical interventions and treatments, that insurance will actually cover. And, even though our insurance covers her general pediatric services, there are many treatments and testing that are important and recommended which will still have to come out of pocket. Insurance either wont cover at all or will only partially cover. Regardless, her presence, guidance, advice and knowledge is GOLDEN and we are blessed to have her. 

About a month ago we had a back and forth with Liam's teacher Ms. Jill (Not to be confused with Dr. Jill lol) 

We were requesting more days and OT for Liam. She kept pushing back stating he wasnt ready for more days and that he didn't need the OT. 

So a meeting was held, to discuss our "concerns", and go over how Liam was doing up to that point. Overall, the meeting went wonderfully.
I went into it, with a Warrior Mama/Battlegrounds mindset and after the first 10 minutes all of that stress melted away. 

Jason and I got to meet his Speech Therapist which i had only met very briefly once before, alng with the Occupational Therapist, and their consultant.

In a nutshell, they went over all of Liams strengths and the things he is struggling with now, which is manly stamina. He sort of fizzles out by 1 pm and is pretty much over it which can lead to meltdowns or just a general lack of interest in participating during that last hour. This is why Ms. Jill was saying that he wasnt ready for more days- she basically was saying that they would like him to be able to make use of the majority of the time he spends there and wanted to build up his stamina a bit more before adding any more days, which we understood. That was pretty much the only struggle at this point.

They said he is no longer delayed in his fine motor skills, for what they require of him at school.  In fact he is on par and even more advanced that some 3 year old  nuerotypical children his age. he is happy and enjoys school unless he gets tired which usually happens around 1 pm and then if he is, then he is done and doesn't want to be bothered.

They went over a day to day with him and showed me some of the therapies and projects that he is currently doing. I was wonderfully surprised at many of the things they told me he was doing, because at the time- he was not doing those things at home.(such as puzzles, beading, sitting on potty with no issues, drawing circles and tracing straight lines, coloring within lines, turning knobs, playing with all toys appropriately, etc...)

I realized that i was not giving Liam enough credit and that he was and is more capable than i was giving him credit for. The meeting was a bit of an eye opener for me and i am grateful for that.

They said he "LOVES to work" and any project they put in front of him he dives in to. He focuses well and concentrates when he needs to, as long as he is "in it", and not tired (going back to the 1 pm wall he hits).

When it was all said and done, it was decided that he will be given 1 additional day, in the mornings. So he will be attending Tuesdays at 11, Wednesdays at 830, and Thursdays at 11. If he seems to do better in the early morning then we will switch him to all early morning.

Here at home, we will be working on Liam being more independent. Working with him to go on the potty more often, dress himself (buttons and zippers will be an on going "project for a bit" ) ,  put his shoes on and off. Since the meeting he has shown interest in puzzles and painting with finger paints, is going on the potty more frequently, he is helping to dress himself, brush his own teeth,  and the list goes on- all within the month. Goes to show that, regardless of developmental delays or "special needs".....  "Give a man a fish, and you have fed him once. Teach him how to fish and you have fed him for a lifetime."

They were all extremely informative, helpful and I walked away finally feeling like we were all on board with "Team Liam".
And, while he may not require or qualify for OT at school for THEIR needs, i know he needs it in other aspects, so we will be acquiring it at some point in the every near future, just on our own. 

We received his blood work results back and they showed that he had low levels or iron and D. He is also showing higher levels of something (i dont have my notebook in front of me sorry, need to look up the technical jargon) in his bloodstream that is caused by anxiety and stress which is common in people with autism. The unknown is hard for people on the spectrum to deal with and because of difficulties with communication and understanding, it is one of the biggest challenges. Dr Jill recommended Levocarnitine, and an additional iron supplement which he is now taking.
Additionally we introduced a second probiotic, a vegan and generic version of the brand name Florastor (which has dairy so wont work for us), which is called  Saccharomyces Boulardii and made by Jarrow Formulas. This particular probiotic helps control the yeast overgrowth in his gut which helps with his leaky gut which in turn helps with behaviors, focus and moods. Only a few days in to taking this additional probiotic he went from going number two up to 5 times a day, to now once or twice a day. Thank God!

 A few weeks ago i forwarded a video talking about bio medical interventions and healing for Autism to some family members. In the email i wrote the following:

The first half talks more about recognizing symptoms and the second half goes into testing and bio medical treatment.
We have yet to have his stool and urine tested, which is an important step in knowing his exact deficiencies but unfortunately insurance doesn't cover the testing completely so for the time being it is in hold, but we will be doing this (God willing) sooner than later. Just another step forward to healing our Liam.

I have to say that since starting his dietary intervention (gfcfsf) and along with supplementing the majority of his "stimming", sleep issues and disruptive behaviors have improved dramatically.
This, along with therapies at home and school have also directly attributed to Liam no longer having a fine motor delay. Over the past few months we hanger had numerous "breakthroughs" and these typically occurred shortly after starting a new supplement, pro biotic, or yeast overgrowth treatment. He is improving on a pretty consistent basis these days and i completely believe in the bio medical approach and healing. I am also so grateful to have Dr Jill to help guide and support us. We have a ways to go but have faith and confidence that we are headed in the right direction.

We had a second assessment visit to the Marcus Autism Center this past Monday. The official diagnosis date is April 22. Boy, they sure do make you jump through hoops to get this diagnosis. As I have stated before we need the official diag., in order to apply for the Katie Beckett Waiver/Deeming Waiver. This waiver will make it possible for us to receive the necessary therapies (Speech, OT, Sensory Integration therapy) to be able to give Liam the opportunity to thrive and have the best possible outcomes in life.

I am in the process of registering for the Walk Now for Autism Speaks . It is my hope to be able to raise some money towards this worthy cause. I look forward to participating in the walk and meeting some FELLOW WARRIORS/ families who can relate :)
More on the walk in a later post...

Here is the list of Liam's Supplements and protocol-

A.M. in his Orange Juice:
1 tsp. Nordic Naturals Arctic D Cod Liver Oil 
1 tsp. Kirkman Labs Spectrum Complete Multi Vitamin
1 capsule (i open the capsule and pour the powder into his juice) Jarrow Formulas Saccharromyces + MOS
1/2 tsp. Levocarnitine (prescribed by our pediatrician, Dr. Jill)
1/3 tsp. TMG with Folic Acid and B12 powder

First thing in the morning i rub a dab of ASD Kids Magnesium Sulfate cream. I use this cream 4-6 times a day, rubbing a dab on his back and arms or legs. 

Lunch time:
1/2 tsp. Levocarnitine
1 capsule Kirkman Labs Iron 5g
1 capsule Kirkman Labs Enzyme Complete DPP-IV (You are supposed to give enzymes with every meal. However, you are not supposed to give enzymes at the same time as probiotics because they will cancel each other out, for lack of a better explanation  Since i give him a probiotic in the morning at and night this only leaves me one open window, lunch time. I am still trying to fine tune this, since i would like him to get the full benefits of the enzymes, but there is only so much juice i am willing to give him a day and only so many hours in a day so ....yeah.)

P.M.:
1 capsule Kirkman Labs Pro Bio Gold (Its my understanding this particular probiotic works best given at night, and all by itself.)

We continue to soar!

Love and light, 

A

Updates and life things

Liam Oliver, little love of my life, smiling with his whole face :) 

A review of our latest supplements (Mag. Sulfate Cream, 5 HTP, Probio Gold):
Its been a few weeks since Liam began using ProBio Gold (probiotic), 5HTP and the Magnesium Sulfate Cream.
Since we began using all at once, it was hard to tell what was doing exactly what. I don't recommend doing it this way, we normally give it two weeks between adding something new but our needs at the times dictated otherwise.
Regardless , i have come to the conclusion  that the ProBio Gold is doing wonderful things for his gut, and behaviors. He seems happier, less gassy and is potty-ing less frequently. He is also stimming much much less. In fact his stims are a rarity these days, and usually only happen when he is over tired, cranky, or overstimulated. His stims are typically flapping his arms or hands, or shaking his head vigorously to get dizzy, or spinning to get dizzy. If hes REALLY frustrated or cranky  -usually brought on by not being able to communicate something to us- he will bang his head with his hands (i so hate that) but these behaviors are becoming less and less...
I thought the 5HTPwas helping him fall asleep at night , i mean i can tell it gets him to slow down a lot and has a relaxing (but sometimes slightly loopy too) effect on him...however i think the magnesium cream actually does more in that department. I am rubbing the cream on his 4 to 6 times a day. I realized this only after running out of the 5htp a few days ago and almost panicked. But, he  went to bed no problem and has gone to bed with no issues since, so i haven't given it to him again. I fully give credit to the mag sulfate cream for that one. Going to have to start buying it by the gallon or something! lol
I actually rubbed a little on Sammy right before bed tonight. I am going to start using it with him as well to see if that might make him sleep through the whole night, since he is still waking up on a nightly basis. (rough....lol)

I have officially switched his multivitamin from Kirkman Labs Super Nu Thera Liquid in Rasberry, to Kirkman Labs Spectrum Complete Flavored Powder. He tolerates the flavor much much better.

Overall hes been doing well.
I am impatiently waiting for this darn diagnosis in March, so that i can get the ball rolling on the Deeming Waiver and get the speech and occupational therapies he needs.
Also this week i will be requesting another IEP meeting with his teacher and school, to increase the days he attends to 3 to 5 days.

Earlier this week i got a letter in the mail from Aetna (our craptastic health insurance that wont cover shit for Liam) telling me that our brand spanking new and super amazing pediatrician that is like an Autism Guru for families like ours.....is no longer "in network". I literally called jason at work bawling, barely able to say the words.
After months and months and months of hunting, calling, begging,  praying....i found Dr. Jill. We had to wait months to see her, since amazingly wonderful doctors like her are like angels for parents like jason and I and the waiting list is always long.  And our insurance actually (at the time) covered her services.
But, alas.
I am on the hunt again.
I was extremely depressed the rest of that day, i broke down in tears a few times over it, i cant lie.
It was a heavy blow for me.
But i don't have the time nor do i have the energy to waste wallowing. Gotta keep on moving forward.
Gotta have faith.
Everything happens for a reason and all that jazz.

For now we go back to our former, and also wonderful-but not as great in the autism knowledge , support and help department- pediatrician. I have to take the twins in for their one year check up. I wonder what he will say when i tell him we will not be vaccinating until the are at least 2? (something dr.jill was completely in agreement with and supported 100%)  Sigh. I guess we shall see.

Another thing i have had to come to terms with for the moment is, that we are going to have to postpone the continuation of the yeast overgrowth battle for now. He will need to be able to try and eat some different foods, and this is where the Marcus institute will come in to play with their feeding clinic.
As it is he has so few foods that he WILL eat (which includes breads that are gfcfsf BUT have yeast in them), that i am just not willing to cut any out at this time. So it will have to wait until he learns to eat some newer foods.
We'll get there though, in the coming months.

Also, I have come across this diet intervention called The GAPS diet, that focuses in on healing the gut.
From what i have read so far it has done wonders for many families with children with autism. I am very interested in trying it out, but again , it will have to wait until he is eating some more, and newer foods. This diet requires you to eat very specific things, most of which he is not willing to eat at this time.
In the meanwhile i am going to research the hell out of it and hopefully be able to apply it sometime in the next 6 months.

This past year has been the most challenging of my life.
Truly.
Made my past struggles seem trivial at best.
Not all, but most.
I am a fighter though. Theses challenges that life seems to want to continue to throw at me, at us? May knock me down momentarily but wont keep me down for long.
So be it.
Besides, i have so much more BEAUTY and LOVE in my life than these so called challenges.
Blessed to be able to say that.

I am focused on making this coming new year an amazing and beautiful one for our entire family.
So cheers to that :)

And so, we continue to soar!

Literally! lol ... you're catching come serious air there bubby! Go Liam!

:)

How your gut and brain are directly linked

How Your Gut Flora Influences Your Health
A great read, and explains how the gut and brain are directly linked and how this effects people with autism. This article can also give you a better understanding as to why Jason and I have chosen a bio medical approach -with dietary interventions, battling yeast overgrowth, the implementation of supplements and therapies to name a few. Furthermore, if you are interested in learning more about healing autism, or maybe just questions regarding autism in general there is a great organization called TACA (talk about curing autism now) that has an amazing website with tons of information regarding all things autism including info on Gfcf diet, supplements, yeast overgrowth , behavior therapies and tons more. Their website is my autism bible.
Thought I would share.

Our Probiotic- And an overview of Liam's current Supplement Protocol

We began using Kirkman Labs Probio Gold, Pro Biotic last week.
I try to give it to him separately from all of his other supplements  since i have heard it has a better effect on its own (but with a meal) . So far its been easy. It is in capsule form, so i just pull it apart and pour the powder into his applesauce or yogurt and he gobbles it right up.
Since our soy episode a few weeks back, we have introduced a few new supplements into his regime and i have to say although i feel it was almost necessary to begin them almost all at the same time due to our current needs at the time, we normally don't do that. we like to space out the addition of new supplements by 2 weeks, to allow his body to adjust and also to track any changes but his pediatrician gave the A ok , so we went for it and so far he has responded positively to the new additions.
So far his suppliments are as follows:
In his morning Oj (or any other kind of  juice, we switch it up- side note, no corn syrup or artificial flavors or colors in any of his juices) i put in:
1 teaspoon Kirkman Labs Super New Thera Liquid in Raspberry (which i am thinking about switching to Spectrum complete powder form because it is much better tasting and lately Liam has not been diggin the SNT taste)
1/4 teaspoon Kirkman Labs TMG powder
1/2 teaspoon Nordic Naturals Arctic D Cod Liver Oil 

At lunch time i give him a little bowl of applesauce or Coconut blueberry yogurt in which i pour the contents of one capsule of Kirkman Labs Pro Bio Gold Pro Biotic

At dinner (Around 6 pm) I pour the contents of  2 capsules of Now Foods 5 HTP 50ml. in another little bowl of applesauce or coconut yogurt. Or if he doesn't want that, I 'll put it in his drink. It usually takes about an hour for him to start feeling the wind down, calming effects of this. Result- he wants to snuggle and go to bed. Sometimes he will take my hand and walk us to the bathroom to let me know that he is ready for bath time. :)


After his bath i rub a little bit of magnesium sulfate cream on his back, or behind his knees or his arms.

These days usually in bed by 730/8pm, he watches one or two of his shows in our room and then i will come into tuck him in and snuggle and he is out withing 15 mins. No wanting to jump up and down on the bed or wrestle around or shake his head vigorously  to get dizzy... just calmness.
Tonight he was giggling and giving me kisses right before he fell asleep. A far cry from where we were at just a few months ago.

So, the overall result thus far?

A more receptive, involved, playful, lovable, calmer, happier Liam.
Tummy issues are a rarity these days, his skin no longer breaks out in little rashes of eczema.He is more tuned into his surroundings and the people around him. His interests have expanded. He is making more and more efforts to communicate, however he can. He is imitating at times, pointing at times. The list goes on and on.
My point being that all the things we have tried and applied thus far have made a positive effect, even if it was small, it was something.

I know it will only get better from here.
The reality is that we are not always going to have perfect days, but that is life.
We can only make up our minds to continue moving forward regardless of whatever obstacles come crashing in our path. We will plow through it eventually, I will always make sure of that.

And so we continue to soar :)