We Are Still Here!

Yes, we are still here.  I started getting overwhelmed with all that was going on…we tried to tackle way too much at one time, not to mention the fact that I am now working from home, have more house to clean(because we moved which is great!), and trying to take care of three kiddos.  The hubby is wonderful, but my days are long!!  Such is life and I am sure most of you are right there with me!

Sweet girl is beautiful, learning new words everyday, thriving with a visual schedule as long as we stick to it, without diagnosis, eating all foods, still having nasty poop and stinky breath, lining everything up and just plain sweet.  I will write more and read more.  I think I have not written because I cannot make sense of it all.  We do not have a diagnosis and I don’t want one if it does not apply, but what is going on with my baby?  We have had MRI’s and therapies…I want success for her, what does the future hold, what can I expect.  She is receiving the services she needs, but my mamma heart needs to put a label on something so I can move forward…I feel like I am in research mode all the time with her off days and on again days, days full of new words, and days of backwards words…I guess I just wasn’t sure what to write.

We have a follow up with the dr. in Feb.

Yeah…so, um…

We have been really busy this summer!

Sweet girl starts preschool today!  Not only am I excited about a little bit of free time and alone time with Little Man, I am so excited for her!  She absolutely loves being around other kids and doing whatever she can get her hands on.  They are an inclusive preschool/therapy center and will work with her all throughout the day.  I met with her teacher to touch base and give her a little bit of a heads up.  Missy started kindergarten this past week and really enjoys it…I think.  She has not said much and I do really miss her while she is gone.  I questioned whether or not to even send her because her birthday is so close to the cut off.  I am still not convinced and I have issues with public schools, but that is not the point.

Sweet Girl is being evaluated the 11th for a diagnosis.  I questioned whether I even wanted a “label”, and we decided to go ahead with it because it would direct us in which therapy would be most beneficial at this point.  I personally think she could really use more speech. I am anxious.

We are still strict on the gf/cf/sf diet, but have stopped supplements.  It was not really a conscious decision,  just kind of happened.  No big changes since that, but I have noticed more tip toe walking.  She stopped wanting her vitamin in the morning.  Any suggestions on how to climb back on?  It sure was a lot to remember.  I applaud all of you if you dose out all day long.

Off to fix two small lunches for two sweet little girls.  Little Man and me today.

Here We Are Today

Sweet Girl is 2.5 years old

Behaviors: minimal arm flapping, some spinning, minimal tip toe walking, surveys, fits for many reasons, hitting and biting, she does not seek out comfort when she gets hurt, she calls everyone mamma except for dadda, does not play with toys as they were intended, she just started attempting to feed food to dolls, she runs and runs and seeks tons of oral and physical stimulation in the forms of jumping, bouncing on a ball, rolling, crunchy snacks, she loves to pull things out and put them back, everything has its place, she loves ceiling fans and points them out in all new locations, she just started with a great interest in washing her hands, etc.

Speech is in progress…she attempts to imitate sounds and we use the sign vocabulary that we have.

Verbal words (that are clear): baby, apple, mamma, dadda.

Signs: please, thank you, more, open, mamma, dadda, book, help, drink, apple.

Biomedical: Super Nu Thera Multivitamin, Calcium Magnesium, Omega Oils, Enzymes, Probiotics, Methyl B-12, DMG

Therapy: Occupational Therapy once weekly, Speech Therapy once weekly.

How It All Began…

Well, when a man and a woman really love each other…

Just kidding.

The delivery was absolutely amazing.  No medical interventions at all, other than a bed and a monitor.  It hurt like crazy and I screamed, but it was one of the most empowering experiences of my life.  Sweet Girl weighed in at about 6 something.  Small baby but full term, about 10 hours of labor, most of which was at home.  It was true womanly moment.  My female body, in all of its strength and femininity not only nourished a small person for ten-ish months but worked with this small person for hours to bring her into this world.  The human body is well, just wow.  I love childbirth.  Sweet Girl was my second baby, but they are all so different and unique that you forget that you have been through it all before.

Anyway…we brought her sweet self home and she nursed and slept and nursed and pooped and nursed and slept.  Rare did we hear a peep from her and even then when she did cry it was very soft.  I was amazed at how different my babies were and I just went with it all appreciating their differences and valuing what I thought was primarily personality.  Daddy is very laid back so I thought she had inherited his patient chilled out demeanor.

She laid in her bed completely content, sat in her bouncy seat completely content, rode in my wrap completely content, and hung out.  She would stare at all people with her thumb in her mouth…just stare.  Many attempts were made by friends, family, and strangers to make her laugh and giggle and occasionally she would smirk.  Sher would smile and laugh sometimes for us at home.  She went through a short “freak out with strangers” phase even if mommy and daddy were around, otherwise she just hung out.  She loved to look out the window.  Late crawler and walker…I thought I probably did not give her enough opportunity.  Very little babbling, if any.

We went to visit my parents and she did not flinch when the vacuum was turned on.  (We did not have a “real” vacuum since our house was all wood floors).  My mother, an interpreter for the deaf, became concerned.  Sweet Girl was only responding to her name sometimes and I became a little concerned, but not too much.  Just thought she was laid back.  Side note:  Deaf and Hard of Hearing is in my family.

We became a little more alarmed as my mother insisted we get her checked out.  We thought she was fine, but began our series of unscientific testing.  We banged pots and pans beside her and no response at all, we would scream her name and nothing, more loud sounds, whispers…anything we could think of and no true consistent responses.  She was responding to her name sometimes and she would respond to some noises…I figured she could hear, just why was she not consistent?  Then I began to wonder if she was even responding to her name or just the sound if it was loud enough, or broke the silence, or was startling.  We decided to go ahead and get her checked out.  Totally fine, but audiologist suggested a follow-up.

Now what?  We then went to a speech therapist for an evaluation.  She was not talking at the time…some babbling.  She would repeatedly make certain noises like “Gully, gully, gully, gullygullygully until it all ran together and would laugh.  She is such a happy girl.  She would run and laugh and run and laugh-hysterically.  It was and is absolutely adorable and makes this mamma almost smile to tears.

Speech therapist said she did not recognize an obvious disorder and recommended therapy once a week.  It was at this time that I started a bunch of research as that is the way in which I handle things.  Read, read, read and I am better able to process.  The downside is that reading opinions, speculations, and often one sided research does not offer much clarity, but rather presents an even greater issue of countless possibilities and partially informed concerned parents.  I still read.  I feel better.

So… she was about 18 months-ish.  She was babbling, saying some very basic words, inconsistent responses to her name being called .  She seemed vacant.  She always seemed vacant…like her sweet blue eyes that loved to stare were often staring straight through me and hardly ever at me.  So very sweet and so happy.  She played alone.  She would take a nap and when she woke up she did not call out to let me know she was up, she would sit and play for quite some time if allowed.  Totally content.

The speech therapist started and Sweet Girl loved her!  She was a huge help and we also started using a lot of sign language.  She would pick up words and then later they would disappear…as if she could only hold on to so much.  She started spinning when she got excited, flapping her arms in large crowds or unknown situations, and she started tip toe walking.  Just sometimes at first and it gradually increased.  She hardly played with toys, just ran and ran or touched everything in the room.  We noticed she had these little dolls that had a home on the rocking chair in her room and no matter how many times they were returned to their home in the dollhouse during cleanup, Sweet Girl would return them to their proper home on the rocking chair.  She always wanted to tv screen down in the van…she just liked it that way.  At first everything seemed sweet…”Look she is dancing!” we would say and then the intensity would increase.  Then she started biting and hitting other kids.  What is “normal” and what is concerning.  So much of her behavior was “odd”.  My brother has Aspberger’s, so with several of the symptoms of autism being exhibited, we were all concerned.

There are so many details left out, but now we are here today.  Sweet Girl is still such a happy little girl.  I love her so very much and I know that this world is a better place because she is in it.  I am afraid of the future and what it may hold for her and what I feel I need to do to help her or protect her, but she is amazing and the journey continues.

Methyl-B12

Doc suggested we start Methyl B-12 injections.  I was a little anxious about injecting anything in Sweet Girl, having needles like that in the house and, well what is Methyl B-12?

So…an article was referred to us as a reference.  I love it when doctors give you material to read instead of trying to convince you or prescribe you something without really explaining it…so, high five to those doctors that understand crazy visits and the parents need to process info at a later date with great reading material.  Thank you!

If article reading is not your thing and you have found yourself wondering about Methyl B-12 then hop aboard the magic school bus with me.

Studies have shown that those expressing ASD symptoms often have transmethylation defects.  “Since every cell in the body expresses the folate/methionine cycle, defects in transmethylation can affect vital biochemical reactions at many places in intermediary metabolism.” (McCandless).

“Intermediary metabolism is the enzyme catalyzed processes within the cells that extract energy from nutrient molecules and use that energy to construct cellular component.” (thank you biology online)

So…methylation is essential to the construction of cells.  I am SO oversimplifying and maybe I don’t really understand….please correct me if I am wrong.

Brief ride over, not so magic…sorry.

From the info, I conclude that my Sweet Girl, exhibiting ASD symptoms, may need some assistance “methylating”, so in comes the methyl B-12 injected subcutaneously into her rump because studies have shown that is where it is most effective every three days.  Hubby does it.

Methyl B-12 helps at the cellular level and the primary reported responses were improvement in “executive function, speech, language, socialization, and emotion.” (McCandless)

Sweet Girl has been receiving injections for about a month now.  We have had a hard time maintaining the every three day schedule, but I have noticed improvements across the board in her behavior and efforts to communicate.  She is making more word like sounds.  She is increasing her attempts at imitation as well as increased attempts at interaction with others.

It is difficult to associate what benefits we are seeing from the injections and what may be from dietary changes, supplements, etc.  It does claim that it is most effective in the long term.  There are mentioned side effects in the articles all of which are behavior related.

I am all for anything that may help and this was one of the first things that the doc recommended.  We hopped on board…at least worth a try.

Just Give A Little

So…in hunting for poop info I found a website about biomedical assistance “loans”.  The website actually found me.  We found each other really and while I love fresh ideas and I like to help others, I am not in love.

lend4health is a website to help individuals and families find the money to fund their needed biomedical tests and therapies.  The money is donated by private lenders and returned to the lender at an agreed upon time with no accrued interest.

I am a firm believer in the biomedical approach to treating autism.  So, I am extremely grateful and have seen first hand the benefits of all things biomedical.  I want all kids and adults alike to benefit fully from this approach and that is why I think YOU all should JUST GIVE A LITTLE.  Do you really need your 5 bucks back?  I mean really…just give it.

Lend 4 Health is an awesome idea and is already helping people, but let’s Donate 4 Health…just give a little.

The Evils of facebook

Yes…I was devoured by a new found addiction to facebook!  I know I am SO behind the times…especially when I realized that not only are my parents on facebook, but my GRANDPARENTS are on facebook!  I realized it was time that I surrender to the inevitable and check it out.

A giant vacuum of time consumption and nosey curiosity.  While I found friends from all phases of my life, and relived a couple of fond and not so fond memories, I went into a time warp and accomplished absolutely nothing during my free time!  New sewing, reading, I hardly even worked (part time job from home) and no posts or replies to great comments and questions!  Apologies.

I am now in recovery, facebook recovery.  If you don’t know what facebook is, don’t try to find out.

So many things going on: I think we discovered the culprit of the nasty diarrhea, started OT, tried some new products, follow up appt with doctor tomorrow to find next steps…I am leaving you with that.  I am sure you are on the edge of your seat filled with great suspense.  Try to contain yourself.

My Sweet Hubby

He is wonderful.

As you may know…we have been having a poop problem with Sweet Girl (grandma suggested a liver function test which I think the dr. plans to do).  Last night I went out and while I was gone she managed to dribble poop out of her diaper as she walked across the living room and stuck her hands in it.  Hubby cleaned it all up (he had to because I was gone) but he did not complain about any of it!  He did complain about the nastiness of it, but never in anger or frustration.  He is a big hairy dude and by looking at him you would not immediately mark him as extremely compassionate and understanding. [Insert Awwwww]

This morning I hear Missy, “Mom! She pooped and it is leaking out!”  Hubby and I both take a deep breath and I mentally prepare to take care of it, but he was up and quickly out the door.  I hear, “I need help, now.” He was calm and matter of fact and so I too was on the scene.  He bathed her and I pulled the sheets and scrubbed the carpet.  Somehow she manages to get it in her hair and on bazaar miscellaneous items…I don’t know why I am surprised, but I always am.  End side note.

I am frustrated.  I am even a bit angry.  I have cleaned up so much poop and I have no idea how to help her and I am frustrated that my little girl cannot talk and I am sad and I am sorry for me.  Total down in the dumps, sad, stare at wall, major human moment.  I am not proud…and we all have our moments…I know.

Act II: The girls are eating breakfast and I am on a stool staring at the sink-dealing, trying to envision life in a few years and what does the future hold and wow I am a mom and just random stringing thoughts making little sense but evoking much emotion.  I immediately reset to analyze mode and start talking.  Hubby says, “This is just the way she is right now.  It is ok and you just have to laugh at these things.”  Oh the wise man he is (and I do not say that sarcastically).

This is all part of our story.  I love my hubby.

No more poop.  I sorta promise.

Clarity or Lack Thereof

My head is spinning.  I am the blessed mother of a two and a half year old sweet girl.  She exhibits so many of the symptoms of autism and I absolutely want what is best for her…therefore, I have read and read and Read and READ and READ some more and everyone has so many opinions.  The Joy of Autism just grounded me.  I was so smothered by this observation and that and all of this over here that somehow I forgot the richness of who she is.  The peace and contentment carried in her being, the joy at seeing me in the morning or anytime for that matter.  The hugs and kisses, the laughter and giggles, the silly things she does that are “odd” but so very unique and special and part of who she is.  She is human and craves the same things all of the rest of us do…to be loved and accepted.  Yes she is only two, but instead of trying to “fix” her and do everything to make her “fit” in the world, it is my responsibility as mother to love and teach and I have forgotten in the mess of diagnosis and this therapy and that.

Whatever the “diagnosis” she is still human, she is still my sweet sweet baby girl and she needs me to be her momma.  A privilege really.  I believe she teaches me way more than I could ever teach her, all of my kids do.  I love being a mom.

It is also my responsibility to raise my children to develop themselves and pursue their dreams, to respect and love others, and to be as independent as possible.  Independence-whether it be putting their pants on alone, working a job, or whatever else it may be.  The independence gives self-satisfaction, happiness, ability, etc.  What can I do when the typical societal systems and my alternative methods of thinking leave me stranded when it comes to helping my sweet girl exist comfortably in a society of so called “normal”.  Society and people have expectations.  I don’t even really care about the expectations, but I want my sweet girl to have a chance, to have an opportunity to make her mark in the world, to communicate, to love and be loved, to experience.  I am at a loss as to how to best help her when I can barely understand what she is asking for.

Oh how I love that little girl.  I love her big blue eyes and her giggles, and I so desperately want to know that when I say I love you she understands me.  It is not really about me, maybe I don’t really quite understand my job of mothering or maybe my expectations of everyone (myself included) are distorted, or maybe I have my definitions of learning, communication, opportunity, joy, etc all skewed or I have allowed them to become mutilated and desensitized by a merciless society of selfish ambition.

Maybe all of the above or none.  Screw the cookie cutters and little boxes made of ticky tacky.  Thank you Estee for reminding me that we all feel and we all are…I SO needed that today.

Is Diarrhea Ever Good?

More poop…I know.  Not apologizing.

Sunday morning is usually hustle and bustle, hop in the car, grab some iced coffee (totally addicted) if we have time and head to church.  Not yesterday.  Missy literally spent 90% of the day screaming…more about that later if I feel like re-living it enough to write about it.  Sweet Girl was out of sorts and had diarrhea all day!  In my typical analytical fashion, I set out to discover the source.  I am so not a scientist and I do not have test tubes, microscopes, ph paper, petry dishes so I have no idea why I even take the time to think about it because I know for a fact that I will never know what caused three nasty bouts of diarrhea on Sunday, July 13, 2008.  But…for some unknown reason I do it anyway and I drag hubby down with me.  Hmm…maybe it was the kidney beans we ate last night for dinner?  Or the blackberries from the farmers market?  She gets runny with blueberries…maybe she and the berry family don’t jive?  Her poor bottom.  She did not really eat anything else out of the ordinary.  I hate changing sheets and yes, I do A LOT of laundry.

Instead of just moving on, I proceed with some very accurate scientific testing.  Since blackberries were one of two suspected culprits and I did not want to let them go bad in the fridge.  They are not known for shelf life, or fridge life, or plant life…so delicate and tasty-and expensive!  With all of those factors in the back of my head, I put on my lab coat and filled her with as many blackberries as she would eat last night after dinner to see if this morning she would be runny again.  No!  Totally dry as a matter of fact!  I am once again puzzled and move on to today’s set of issues.

I must add that I allowed the thought that maybe it had something to do with the supplements…maybe too many?  I gave them all to her and then the thought crossed my mind- Maybe the diarrhea is good.  Is it getting yuck out of her sweet little body and helping her in the long run?  If so, I should do laundry with a smile.  I am going to chose to believe in the good of diarrhea.

Unfortunately, the scientific testing will continue.  I just can’t help it.