Thursday, May 26, 2011

Autism One Day 2 (Information Processing)

This was a great session!  The strategies here apply to kids on the spectrum, kids with ADHD, and ME!  I didn't realize it, but I have a lag time in my information processing, also.  So good to know that I'm not inattentive.  I just takes me a while to connect with what is being said and to form a response.  Erik summarized this one, too.  My words in italics.

Information Processing

Dr. Nicole Beurkens presented on simple strategies for improving information processing in ASD.  The definition of processing has three parts: 1. To take in. 2. To make sense or make meaning, and 3. Do something.  She made the analogy that individuals with autism process information like a dial-up internet connection compared to neurotypical individuals having a broadband internet-like speed when they process information.  Steps 2 and 3 of the above definition take longer in individuals with autism.  She made the case that autism is a severe information processing disorder and gave a few examples of children that she has treated that illustrated this point very well.  

Autistic individuals have deficits in the simultaneous processing of information, and the communication, social, and behavioral symptoms we see in these children are the result of processing problems.  One of her teen patients who has shown remarkable progress over the years said it best:  “I feel so confused all the time.”
She also gave the example of a little boy whose teachers said he would say such random things that didn't make any sense.  In a treatment session, Dr. Beurkens said the child said something out of the blue and realized the statement was about an activity they did 15 minutes earlier.  He had a 15 minute delay in processing.  Through her techniques, he now has a 3 second delay!  This was interesting to me because it made me realize why B has a hard time taking his turn in Candyland in a timely manner.  Also, why he will stand in the middle of the living room when we ask him to get his shoes on.

Dr. Beurkens proposed that the ways adults engage with children makes a difference on their ability to make sense of what is happening and to respond appropriately.  She recommended three simple steps for parents to try in order to help their kids on the spectrum.

  #1 is to SLOW DOWN, not necessarily speaking v-e-r-y s-l-o-w-l-y, but pausing and allowing time for the child to register a response instead of repeating what was said so soon after the initial request.   The parent should stay with the child and expect a response.  Slowing down allows for better processing and less stress.  There should be a pause and a  wait time.  She said we need to "slow down to speed up."  We slow down so our children can make the connections, eventually speeding up the processing time.

 #2 is SPEAKING LESS, specifically using fewer words.  Say what you mean and know when to stop!  Do not repeat things over and over.  Increasing use of non-verbal communication was recommended.  Increase  the nonverbal and reduce the verbal.

  #3 is to STAY CLOSE.  Get the child’s attention first, then communicate the message.  Often times we communicate from a larger distance than our kids can process.  Ever holler downstairs that dinner is ready?  Make sure the child's attention has shifted, not necessarily eye contact.  When helping with homework, sit at a 90% angle from the child.  

When your child is approaching melt down or stressed:
Stop and Wait.  When a child is already confused and overwhelmed, adding more into the mix is not helping. Focus on one thing at a time and pause to let the child tackle it.  Give the child time and space to work through anxiety/meltdowns.

Autism One Day 2 (Parenting Under Attack)

I have to take back what I said in yesterday's post.  Today was Daddy Central!  So many warmed my heart.  Three cheers for the Dad's!

Erik typed up a summary of two of todays sessions.  I'll copy, paste, and add my thoughts in italics.

Parenting Under Attack

Attorney Lisa Colin discussed how parenting is under attack by Child Protective Services when the situation involves autistic children.  It was mentioned that in most states, CPS has a central registry where anyone can call in a report of abuse or neglect.  The reports can even be anonymous.  Once the central registry receives the complaint, it is passed on to the local/county CPS to make contact with the child within 24 hours.  

Complaints to CPS are also being used, according to Ms. Colin, “strategically.”  For instance, physicians have called CPS on parents that refuse to vaccinate their children according to the government recommended schedule or those parents that disagree with a doctor’s treatment plan.  In many cases, this is done by the doctor as a way of covering his/her own behind.  Same is true for some school districts.  She also mentioned that she had seen a case where a in-home therapist called CPS on a family after seeing numerous supplement bottles (a very familiar thing to families using bio-med treatments) and thought the child was in danger because the therapist did not understand why the child would be taking those products.  Yikes!  Supplements are essential!   It was mentioned that if CPS takes a child out of the home, they will want a medical examination done by a CPS contracted physician that will most likely not continue any biomedical treatments that have been helping the child since most mainstream physicians are ignorant of these therapies. She also mentioned they would more than likely vaccinate the child on a "catch up" schedule which means many vaccines at once.  

 Ms. Colin recommended that families with a special needs child have a plan for custody of the child in the (rare) circumstance where parents may be accused of neglect/abuse and detained by law enforcement.  This person would need to be someone that is familiar with your child’s therapy and willing to possibly keep the child for possibly several days.  It is important to provide detailed information or have a file with the information that would be required by a caregiver in this potential situation, for example the caregiver needs to know where the parent purchases the child’s required supplements.  Another take-home message Ms. Colin stressed was that administrators and therapists in the school system are NOT to be considered friends. You can be friendly, but it's not a girlfriend gab session.  They should be placed on a need-to-know basis.  They do not need to know all of the details of the bio-med therapies that the parent is using to help the child recover, as these individuals are most likely ignorant of the treatments and may view them unfavorably.

Wednesday, May 25, 2011

Autism One Day 1

Today was our first day of the Autism One conference.  Not too much to write about today.  I attended one session that was semi-interesting.  I may blog about it later, or not.  The most informative sessions are coming up later in the week.  Erik has agreed to blog the sessions he attends.  Hooray!

Speaking of Erik.  What astounded me last year, and this year, too, is the low number of fathers at Autism One.  I realize some families can only afford for one spouse to miss work.  Also, some families need a parent to stay home with the children or cannot financially afford the trip for two.  But it's the stories of the mothers shouldering this all on their own that break my heart.  I've heart numerous accounts of fathers not being able to face autism and it's challenges.  They either leave, disconnect, or leave the care and research up to the wives.  We all handle stress in different ways, so I can't judge what's in the heart of these men.  Sometimes, like today, I'm reminded of just how blessed I am to have Erik by my side.

Erik sat through the cooking sessions today.  What a guy!  I attended the cooking last year and a few sessions this afternoon.  I'm going to share the most amazing recipe with you.  I'm hoping B someday outgrows his coconut allergy because this recipe is delicious!  I'll share more recipes later.

Coconut Cilantro Chutney 
by Deepa Deshmukh, RD

Makes 1 cup of Chutney

2 cups fresh cilantro (stems and all!)
1/4 cup fresh mint
1/4 cup dry or fresh coconut
2 T pepita (pumpkin seeds)
1 T fresh lemon juice
1/2 salt or to taste
1/2 jalapeno (I'm thinking this could be left out)
1 T cumin (optional)
1/2 cup water for blending, adjust as necessary

1. Using a blender or food processor, puree all ingredients together.

  • As a veggie dip or with crackers
  • Blend with rice, quinoa or other grain (quinoa was awesome with this!  I wonder if minced cauliflower would work for GAPS
  • Sauce, condiment on eggs or grilled chicken or fish
  • Mix into hummus or yogurt

Friday, May 20, 2011

PANDAS, Vulnerability, and God's greater plan

Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus.  The scientific jargon is a little confusing, so I'll explain it in real person terms.  It's a disorder that mimics Tourettes and Autism.  Some say it's on the Autism Spectrum, some say it's not.  In Bryson, it mimics autism and Tourettes when he is having a food reaction, is overstimulated, over tired, or gets an illness.  Other than that, lately he's been pretty neurotypical.  A little bouncing off the walls and into furniture, but I can't complain.

Have you ever made yourself vulnerable?  A little too vulnerable?  I'm talking holy-cow-I-feel-so-uncomfortable-but-I-can't-help-it vulnerable.  Put yourself out there a little too much?  Yep.  I did that.

I was having a bad, well horrible, few months.  Guilt, blame, anger, sadness, guilt, blame, anger, a broken record.  At our MOPS meeting, the speaker was talking about guilt.  The first time he said 'guilt' I left the room in tears.  I honestly don't know what he said during the rest of the speech.  I do know he passed out these sheets that asked us list what was expected of us as mothers and my thought was "to protect your child."  And I felt I didn't do that.  That I'd put my innocent baby in harms way.  That his health is all messed up because I didn't do enough research before making decisions.  By the end of the MOPS meeting, I was a blubbering mess and I blubbered that mess onto our mentor mom.  I'm sure she felt completely caught off guard.  What was this crazy talk?  I did it again at small group....twice.  So, now I feel exposed....vulnerable.  As a shy person, I prefer to keep unfavorable feelings tucked away like a napkin in my pocket.  But my feelings erupted and I let people see my mess of a tissue.

If I could do this year all over again, I'd give myself permission to cry, to vent, to lash out, to complain about the unfairness of it all.  I would tell myself to do this in the presence of God.  Because when all these feelings are stuffed inside, there is little room for joy, for love, for peace.  It's impossible to be an effective anything when joy, love, and peace are lacking.  God is the great healer and I need(ed) to let Him in to heal.

I'm feeling some of that peace and it's a good place to be.  I know it's just a taste of what God can do with this broken heart.  He has blessed us even through this trial.  Awesome.

My little brother (okay, so I need to stop calling him that because he towers over me) said something to me that has had a profound effect.  I was telling him how B's story has been able to help others and that I'm grateful for that, but why does B have to suffer for it?  My brother said maybe the goodness is not lost on B.  God is teaching B incredible self control, preparing him to be the man God intends him to be.  Preparing him to fulfill God's will.   Amen!

Wednesday, May 11, 2011


I won this award:

Hooray! :0)

I'm not embarrassed to admit I Googled Versatile.  This is what it means according to :

  • capable of or adapted for turning easily from one to anotherof various tasks, fields of endeavor, etc.: a versatile writer.  (Yup.  Some may call it ADD.  I much prefer versatile.  And the shoe fits.)
  • having or capable of many uses: a versatile tool. (I can write a blog, shop online, check facebook, get my kids back into bed, get my kids back into bed again...all at the same time.  I have many uses!)
  • Botany attached at or near the middle so as to swingfreely, as an anther. (Huh?  I swing freely?  Like an anther?)

Here are the rules for accepting this award:

1. Thank the person who gave you the award and link back to them.
    Thank you Tasha at One Day at a Time.....  Tasha has a sweet blog about her life and  family.  She is a huge advocate for her little boy with Infantile Scoliosis.  And she is a home educator.  I could learn a lot from her!

2. Tell 7 things about yourself.
  • When I was 17, I went on a date with a gorgeous guy.  I was smitten.  We're still dating....even if our dates often include our children.  And I'm still smitten.
  • I love all vegetables accept for eggplant.  I really want to love it...but yuck!  Maybe I just don't know how to cook it.  I really wish the rest of my family would love veggies because it's really hard to eat a sack of turnips by myself.
  • I was a preschool teacher before I had kids and I LOVED teaching.  I miss it sometimes, but I find being a stay at home mom to be more rewarding.
  • I'm not scared of bugs if they have 6 legs or less.  Anything over 6 legs is just plain creepy.  I made myself hold a millipede in college to get over my fear. *shudder*  Obviously, it didn't work.
  • If any sport involves a ball, even putt putt golf or bowling, I will lose.  Or my team will lose.  I'm that uncoordinated.
  • I really enjoy doing the laundry.  I find it soothing, and I can fold while I watch the television.  If anyone would like to clean my kitchen, I'll do your laundry.  Any takers?
  • I thought I'd be a lot better at being a wife/mom.  I think we all think that, don't we?  Sometimes I wish I had a mentor to come in and show me how it's done.  But when my kids give me a zillion hugs throughout the day and when Erik gives me that same smile that melted my 17 year old heart, I realize God has blessed me immensely and I'm eternally grateful. 
3. Now I must pass on the Versatile Blogger Award.  I follow a lot of great blogs!

I'm linking to my dear friend at Copelands on the Cusp.  She just has the sweetest family.  I love her writing and I admire her mothering skills.  I want to be her when I grow up. :)

PS- Please forgive the funkiness of this blog entry's format.  I'm not quite sure what happened, but I'm going to swing like an anther and let it go.

Saturday, May 7, 2011

Funky Flaws and Following Through

We've all got weird quirks and funky flaws....right?  Please tell me I'm not the only one.  For instance, I have a phone dialing phobia, but I love to receive phone calls.  I can walk over a pair of shoes in the middle of the hallway for two days, and they only seem out of place to me if company comes.  I've lost my keys so many times, Erik had about six keys for our minivan made for me.  I use lots of run on sentences, too many commas, and commas in all the wrong places.  Here's a new one I've discovered:  If I say I will blog about something in my blog, I don't....or I can't seem to put together the words to form the post.  Remember how my home school post only had parts one and two?  Remember when I was going to blog about everyone who has so graciously helped us with B?

(I need to add a HUMONGOUS thank you to Seth here.  Our friend Seth drove to our house weekly, sometimes twice a week, to give B his allergy shot for us.  How many people are that kind and generous?  Thank you! Thank you! Thank you!  And thank you Shari for praying and being so supportive of Seth helping us out.  You two are wonderful!)

Back to the following through......I said I was going to write about the GAPS diet and haven't tackled it yet.  So, I will not blog about it...ever.  Especially not in the next week. I won't explain how it heals a leaky gut.  How animal fats and fermented foods are good for you.  I definitely won't tell you how it can decrease food intolerances.  I won't write about deciding B and I will be doing this together.  All this will not be coming stay tuned. :)