Friday, May 25, 2012

Autism Diagnosis: How to Move Forward With Treatment and Therapies

I like to periodically update readers on Bella's treatments and our experiences with her autism.  I also have many parents ask me about my thoughts on certain behavior interventions and treatments for autism.  So, here's a recap of where we've been and where we are going:

Gird your loins peeps, this is going to be a long read.  If you think your child might have autism, have a child with autism, or know someone who does, this may be a beneficial read for them.  I have a daughter with autism who is now 3.5 years old and I have been researching treatments ever since her diagnosis.  I am also receiving my Master's in Special Education and have focused most of my research on the topic!

So, here we go...

How I knew my child had autism:
  • Lack of eye contact
  • Lack of response to verbal stimulus (could call her name over and over with no response)
  • Inappropriate play (didn't play with toys correctly, usually lined them up or threw them)
  • Delay in reaching milestones (sitting up, crawling, walking late *18 mo)
  • Delay in speech (Bella experienced speech then stopped speaking all together)
  • Spinning, focus on wheels, head banging, odd noises and repeating of sounds
  • Intense tantrums
  • Seemed unconcerned that I left the room
  • Odd sleep patterns
  • Sensitivity to textures in foods and materials (very picky eater)
  • Lack of proper safety boundaries (would walk directly into freezing ocean and not experience sensation of cold), would put hand under scorching hot water without flinching
*These are just the most prominent symptoms I noticed, there are many more and they differ per chid (check this out for more)

What did I do when she got diagnosed?
*After having a few good cries
  • Got referrals from a pediatrician for early intervention through the state
    • Before a child turns 3, they will have in home therapies (speech, OT, PT as needed), this is covered by the state and is free to you.  Get started ASAP!
    • Your child will first be observed to ensure the early intervention team concurs with diagnosis
    • Studies show that the earlier a child with autism begins therapies, the better responses they have towards recovery
  • Signed up for Applied Behavior Analysis (ABA).  For military folks, this is covered by ECHO (ask about it).  
    • This therapy has been the most helpful and has had the GREATEST impact on Bella's development thus far.  It is really hard at first, and you feel like they are torturing your child but... give it time, you will be amazed at what you see!
  • Began a Gluten Free/Casein Free diet
    • It was the VERY FIRST THING I DID
    • Bella basically never had solid loafs (poo)... ha, ha. She had loose stool at all times.  This was mostly a reaction on milk products and it caused her much discomfort.
    • Here's a helpful article on GFCF diets 
    • It a nutshell, most parents of ASD children feel that their children cannot digest gluten/casein due the to weakening of their digestive walls (or leaky gut).  Therefore gluten/casein seep into the blood stream creating an "opiate" effect (increased tantrums ect).  Most studies are not conclusive but overwhelming parental feedback supports a strong  case for removing gluten/casein from the diet.
    • This diet seemed overwhelming at first but once we got the hang of it, it became second nature
  • When you child turns 3, they will end early intervention and move onto a special education preschool (covered by the state and coordinated through your early intervention case manager)
    • Sending Bella to a special education preschool was really hard on me as a parent.  It made me feel sad that she had to go to a "special school" but, it has made a HUGE impact on her development and her behaviors in general.  She speaks more, is more patient, and tolerates other children better!
  • Be sure that when your child turns three, you ask your pediatrician for a referral for speech, occupational, and physical therapies (depending on your child's need)
    • Although kids get speech, OT, and PT in special education preschool, they can also get it outside of school!
Bella's therapies/treatments now:

1- Special education preschool (Mon-Fri) 8:30-12:30 (she gets speech, OT, and ABA in school)
2- ABA therapy in home (Mon-Thurs) 2 hours a day at home with a therapist
3- Speech/OT- 1 hour a week outside of school
4- Gluten/Casein Free
5- Biomedical treatments (just starting)

BIOMEDICAL TREATMENTS: Our newest journey... 

I have waited to begin biomedical treatments on Bella until she was a bit older.  She is now 3.5 and we are starting the process.  I changed her pediatrician to a DAN Pediatrician (Dr. Bob Sears) so that we could move in this direction.  I highly recommend searching out the counsel of this type of doctor.  Most of theses doctors have done extensive research on autism spectrum disorders (Bella's doctor wrote a book of his own) and will be a great advocate for your child.  They will be sensitive about vaccinations and more interested in treating your child from the inside out.  I had to battle with some of her previous doctors about my concerns and desires for Bella's treatments.  Once I changed to this new doctor, we are on the same page all the time... what a blessing.  

*Blog post to follow about the biomedical treatments we will be starting on Bells.

My conclusion after research on Biomedical treatments for Bella:
In this article (and many like it) it is evident that not all interventions will be effective on all children with autism.  The percentages on most treatments were split down the middle (worked for half the population). You may look at the results and think these treatments are not worth it but, when I look at them....I see a fighting "chance".  It's hard to pass up a treatments when there is a chance your child might become a more productive member of society who can one day care for themselves? I'd hate to have not tried these interventions on my daughter only to find later that they could have made a difference.  The fact is, biomedical treatments may show little to no positive effects on Bella, cost us money, and lots of stresses.... however, I feel this innate need to fight for Bella to have this chance. Ultimately, she is in God's hands:)
From the article above, of the 192 participants takingVitamin B12 injections (one of the biomedical treatments:

4%(experienced worsening symptoms)   33%(experienced no change)   63% (improved)   

A good quote from one of the sources I read:
"Autism is a very complex disorder, and we do not fully understand it.  However, there are many biomedical abnormalities that have been identified, and most can be treated to some degree.  By following the testing and treatments outlined above, many children will improve to some degree, and some will improve dramatically.  Sometimes one treatment shows great benefit, but it is more common that each treatment helps a small amount.  However, the cumulative effect of multiple treatments can be substantial.  Younger children are the ones most likely to benefit, especially those who had a period of normal development followed by regression, but older children and adults can often benefit from the same treatments outlined here." 

A useful "How-to-PowerPoint" for starting Biomedical treatments (from a mom who has done it):

Whew.... that was a lot of info!  My head hurts, does yours?

Good luck!

Sunday, May 20, 2012

Autism on a good day... and a tough day....

Autism on a good day....

Be still my beating heart.  Did you hear her?  Did it make your heart as happy as it did mine?  I mean, to consider where Bella was one year ago and then watch this video.... God is a gracious and merciful Father.  She is making so much progress friends, thank you for your continued prayers on her behalf.  We feel them... in these moments... and in the moments you will witness below:)

Autism on a tough day...

In this video you see Bella during ABA therapy.  She had been tantruming for a good 10 minutes prior to me filming this... and continued afterwards as well.  This is by no means her worst tantrum but, I wanted to show the vast behavior changes associated with autism.  In this video, we were just trying to get her to say "banana".  She was not happy with that, and had been trying to bite herself which is why her therapist was constraining her...

We were also trying to figure out why she was so frustrated to begin with :)  Please know that her therapist was not "being mean" by showing so little compassion.  ABA therapists work with kids to reward them for positive behavior and they ignore (or don't reward) the negative behaviors.  Heart breaking, I know... but it works!  We love Sarah (her ABA therapist), she has made a huge impact on Bella (as did her prior therapist Lynette)!

Sunday, May 13, 2012

The woman who fears the Lord....

Today is Mother's Day.  I woke up to the sounds of my sweet offspring pounding on her door at 6am this morning.  Did I want to roll over and cover my face with the sheets, yes... but, I know that would be a futile endeavor.  As my heavy eyes opened, I gazed at the ray of sun that peaked through the curtains and I asked God for the strength to endure another day.  Strength because I strive to be a godly woman... a woman who fears the Lord, but I fail endlessly.  I am glad that I can ask such a favor from God...especially on this day.

Mother's day is a joyful occasion, but honestly the only thing I can think about today is Proverbs 31.  Josh read the passage below to me on the day he proposed marriage... and at this moment, I feel overwhelmed with the immensity of how hard I should fight each day to achieve such womanhood.  In fact, before I read this passage today the only thoughts in my head were.....What will Josh get me for Mother's Day? Who will praise me for a "job well done" with Bella?  Will I get to relax?  What Starbucks drink do I deserve today? Me, me, me, me... yada yada yada....

Read Proverbs 31 below... then come back to me....

Ouch.  It hurts.  I fail so greatly....

When I read this, I don't stress about the fact that my knitting skills consist of maybe sowing a button on something.  In fact, if I made clothes from scratch, family would be dressed in bags and appear homeless.  I am also not concerned that my artistic sensibilities amount to spray paint and tape.  I set things on fire often.... lock my child in my house while I'm outside in my bathing suit... kill plants... forget items at the grocery store...I'm clumsy...grouchy at times... sometimes I don't shower as often as I should.... eat frozen yogurt in excess and food off the floor... the list goes on....

What I'm most concerned about is this list:

...her husband trusts her...
...she dresses herself with strength...
...she opens her hands to the poor...
...strength and dignity are her clothing...
...she laughs at the time to come...
...does not eat the bread of idleness...
...charm is deceitful... is vain....
...the woman who fears the Lord, is to be praised!

Oh if I could only aspire to achieve even one of these things daily.  I try, I do... by God's grace.  So, on this day... where we celebrate motherhood, I am going to strive to be this woman... the woman who fears the Lord.

Side note: My mother (Kiki) and mother-in-law (Carol) have lived lives that exemplify the woman you read of below.  How did I get so lucky to be within reach of such God fearing woman?  Love you both!

Proverbs 31: 10-31
The Woman Who Fears the Lord
[10]  An excellent wife who can find?
She is far more precious than jewels.
[11] The heart of her husband trusts in her,
and he will have no lack of gain.
[12] She does him good, and not harm,
all the days of her life.
[13] She seeks wool and flax,
and works with willing hands.
[14] She is like the ships of the merchant;
she brings her food from afar.
[15] She rises while it is yet night
and provides food for her household
and portions for her maidens.
[16] She considers a field and buys it;
with the fruit of her hands she plants a vineyard.
[17] She dresses herself with strength
and makes her arms strong.
[18] She perceives that her merchandise is profitable.
Her lamp does not go out at night.
[19] She puts her hands to the distaff,
and her hands hold the spindle.
[20] She opens her hand to the poor
and reaches out her hands to the needy.
[21] She is not afraid of snow for her household,
for all her household are clothed in scarlet.
[22] She makes bed coverings for herself;
her clothing is fine linen and purple.
[23] Her husband is known in the gates
when he sits among the elders of the land.
[24] She makes linen garments and sells them;
she delivers sashes to the merchant.
[25] Strength and dignity are her clothing,
and she laughs at the time to come.
[26] She opens her mouth with wisdom,
and the teaching of kindness is on her tongue.
[27] She looks well to the ways of her household
and does not eat the bread of idleness.
[28] Her children rise up and call her blessed;
her husband also, and he praises her:
[29] “Many women have done excellently,
but you surpass them all.”
[30] Charm is deceitful, and beauty is vain,
but a woman who fears the LORD is to be praised.
[31] Give her of the fruit of her hands,
and let her works praise her in the gates.

Thank you Josh for giving me Bells.
Thank you Bells for bringing me closer to God.

Tuesday, May 8, 2012

I Never Like Leaving Home

Part of military life (especially since 2001) is leaving the ones that you love, but no matter how many times you do it, for training or deployment, it sucks!
I am currently at Camp Dwyer in southern Afghanistan and I will be here for the foreseeable future (OPSEC and all).  This deployment could not be any more different than my previous deployment.  In 2010 I spent time on USS Winston S. Churchill and USS Oscar Austin (part of the USS Harry S Truman Strike Group).  We sailed from Norfolk Va, to Portsmouth England, to off the horn of Africa, to Bahrain in the Persian Gulf, to Canes France on the way home, and then finally back into Norfolk.  All in all I was gone 7 months spending 19 days on land. 
This time I Flew from March Airbase (in SoCal) to Alaska to Afghanistan.  I took 3 1/2 weeks to get to our deployment position on my Navy deployment, this time it took 1 1/2 days.  There has been a little over a year between my deployments and things couldn't be more different.  I wear a different uniform now, which has caused alot of people to ask my wife "Is your husband in the Marines now?" (the answer is no as I am a US Navy chaplain serving with Marines).  I have been exposed to the idea of working out mid day in boots and uts (meaning in your uniform minus the blouse and cover.  I never did this once in my 2 years with the surface Navy).  Everyone here has their weapons (or multiple weapons) on them at all times.  They have them at chow, they have them in counseling sessions, they have them in church services, and out here there are rounds in those weapons.  It's hard to get used to the idea that that 18 year old, and that 18 year old, and that 18 year old all have 30 rounds in their M16.  Finally, here I leave my room in the morning and walk about a 1/4 of a mile to my office.  When it is time to each I leave my office and walk about 1/4 mile to the chow hall.  When I was on the ship I had to run on the aft missile deck for exercise with 57 laps equalling 1 mile.  It's a whole different world out here, but some things are still the same.
I still miss my little girl!  It's painful to hear about Bella having new experiences and using new words, while missing all of it.  It's hard to have the thoughts "when I get back I'm gonna do this, or this, or that"  only to remember "oh yeah that's a long way away." 
But as I type this I remember the words that I read earlier today in Philippians 4 to "rejoice in the Lord always and again I will say rejoice."  How I have been blessed by God to have the opportunity to minister to the young men and women of our military.  To show them the love of Christ and to be used by God to develop in them a love for Him and His glorious Word. 
My wife and I talk alot about the cost of being a Chaplain and we always come to the same conclusion; it's painful, and sometimes it sucks, but it's worth it.  What a great thing to be called to.
Thanks baby for being my wife and showing me what it means to have a heart that is dedicated to God and seeks to rejoice in Him.