Sugar Blues

Emma’s first day was about as perfect as it could get.  She was happy, cooperative, and ate a ton of food.  Miss Rachel said that she wouldn’t sit down at all during circle time, but we’d work on it.  I was amazed – when I went out on the playground to get her she didn’t do her usual running to me with arms open gleefully yelling “Mommy!!”  She looked at me, and continued playing in the sand, happily talking to me about the sand buckets she was putting on her head.  It was unusual, but could’ve been worse.

However, she didn’t nap, and it was her first day in preschool.  She was so exhausted when we got home that everything was a CRISIS of epic proportion.  You didn’t dare look at her cross-eyed, for fear or roaring retaliation.  I wanted to hold out until 7 or 7:30, but couldnt resist anymore.  6:30 she was in bed, crying and crying.  “Ouuucheeee!!!! Mommy, oucheee!!”  I think that she was just overstimulated beyond reason at this point.  I went in there and had to sing to her for 25 minutes before she finally passed out…  ugh.  That makes my feet and back hurt.  ‘Sweet thing is soundly sleeping, and I’m getting ready to head to bed soon too.

On a “ME” note, I started back on my no sugar, no wheat, no corn/potato diet today.  Double UGH.  The last time I started this, I had a raging headache for 3 days, and felt like I had a horrible flu for nearly 4 weeks.  Let’s all keep fingers and toes crossed that this time is better.  I already have the headache, yae, right on track!  I forgot how bad it was when I started…  Now I wish I hadn’t gotten off track for so long.  ‘Talk about motivation to eat well!

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Another Beginning, A New Belonging

Today was Emma’s first day in preschool.  I sent her fully armed: Dora sweater, Baby, Blanket with stars.  I felt like I should include a suitcase complete with other favorite bedding items, books that calm her down, her playdough tools, sippy cups, rubber gloves, more babies, a DVD player and Popeye movies, and much – much – more.  Will I ever feel ready? Will I ever be truly confident that she HAS everything she needs?

She’s one month away from turning 3, so technically she’s 2. And she towers over the other 3 year olds like a large, blue-eyed statue.  She’s the benevolent giant of sorts, harmless until you get in between her and the baby.  She seemed curious about the classroom and began exploring immediately.  Her new teachers are very experienced, relaxed, and very nice.

I’m sitting in the school library.  I brought my painting supplies with me, in case the art building was open for business.  It appeared that they were still preparing for the next semester, so I guess I’ll just have to wait another 5 days.  [[sigh]]

You know, I have been feeling like I might be living on some sort of a moving circus train car or something; I just can’t get my footing.  Life seems to be changing so rapidly that it’s like when I went on the fishing boat off the coast of Oregon.  It wasn’t horrible, just hard on the knees.  Between the huge change of school semesters and vacations, Emma’s continual process of unpredictable development, my son growing so fast it catches my breath, doctor and therapy and school appointments, —- normal —- Will I ever have a section of life that feels normal/settled/regular ever again?

I’ve started breaking ground for my public service plans.  I’m going to be operating a toy-bank for children with special needs.  I appear to have connected with the right people, and in the next few months I should have a location, complete with the tax-write-off receipts and everything.  I now need to put together a plan on approaching our local thrift stores, larger businesses, and corporations to ask for toy donations.  I live in the poorest county in Colorado, and there are plenty of special-needs children here that would benefit from free toys.  It’s going to be relatively low-maintenance once I get it all set up [[knock on wood]].  I’ve always wanted to create or be a part of something-anything that genuinely helps people.  The trick is motivation.  Meaning, you have to find something that really fills you with PASSION.  Something that means so much to you – that even when all energy reserves are gone – the thought of working on the project gives you more energy within itself.  🙂   Through Emma, I have become passionate about not just autism, but all special needs children.  I’m pumped.  Give me some toys.   😉 😉

I also found out that there is a local [yes, in my world, 55 miles away IS local] support group for parents of SN/autistic children that meets once a month.  -?!-  Why I didn’t hear about this 9 months ago is a mystery, but it’s certain good news regardless.  It’s not big, and they are meeting this Saturday.  I’m going.  I’m nervous.  I’m worried.   🙂  I hope I love it.

Anyway.  Emma has decided that she loves POPEYE.  Isn’t that funny?  Today I put it on while we drove to school.  She was back there, and the next thing I know, she was LAUGHING.  As in – REALLY LAUGHING – AT POPEYE.  Isn’t that just fantastic?  She got the humor [I tremble to think about WHAT was so funny to her] and that is just priceless.  For those that don’t get why I’m so excited about this, humor and jokes can be very difficult for a person with autism.  Some never get it at all, because the world around them is taken very literally. 

Hmpf.  Popeye.  Who would’ve thunk it?

>>Ding-Ding<< round one – Done.

Emma is sitting on the floor taking all 5-billion little plastic hair bands out of the box, transferring them to a small red jewelry box.  Now she’s chewing on the outside of the jewelry box, and there are 2-billion little plastic hair bands all over my living room floor [think of orthodontic bands].  Hey, at least they’re multi-colored, it’s like a party.  A fiesta-band celebration!  Did I mention that she is wearing her WEDDING DRESS that she got for christmas, today?  Yes.  The princess is here.

The queen is typing, with a nice hot english breakfast tea within inches of hand…  🙂 We’ve had a pretty decent morning.  Emma woke up and I brought her to bed with me, where she pointed at my breasts and said, “NO TOUCHING!”  Ha ha ha!  I’ve been working on getting her to hold off on the grappling that she thinks is so hysterical, leaving me red-cheeked and frustrated.  This is the first I’ve heard of her interpretation or understanding that I might not appreciate the attention.  🙂

*brb*Well, the hair bands just got thrown all over the floor, so I went and picked them up.  Kind of.  There’s an assortment of dog hair, sawdust, and bits of floor stuff in there too now.  Ugh.  *brb*Dora is now out of the car and into the home dvd player.  I also grabbed the remaining powdered mini-donuts from our car trip.  😀  Okay, now I’m ready to WRITE!

Tuesday: we left at 4:30 am for Denver.  Item one: Meet with Dr. Van Hove, Pediatric Metabolic Specialist. Results: None, follow up in three years for another basic panel to see where bloodwork is at. 

All of the tests that were performed came back negative, which is positive, meaning that everything is normal, which should make us happy, but really it was sad.  🙂  Somewhat.  It would be nice to find out some basic underlying problem that could be cured with a pill, but I guess it would also be rather anti-climactic after all this excitement we’ve had lately.  The Dr. said that  he has no doubt that there is an underlying metabolic condition, but being that she has no other physical manifestations right now, it doesn’t warrant further testing.  If there is a sudden deterioration of anything physically or otherwise, then we will re-address further investigation.  He said that most likely whatever it is will eventually become more apparent, as all metabolic conditions worsen over time.  However, it could be 2 years, 10 years, 50 years, who knows?  We have put it to bed.

Then we did some shopping.  Reserved our regular hotel room.  Ate at the Olive Garden.  [Yum!].  Went to bed, and all was well.  Overall it was one of the better trips as far as Emma’s behavior is concerned.

Wednesday: Arrive at the Developmental Clinic at The Children’s Hospital, 8am sharp.

A summary and brief regurgitation…

Testing with Emma directly was around 3-4 hours.  Then, there were interviews of all sorts, and general discussion regarding results.  Emma was in a decent mood throughout the testing and etc, but it took soooooo much effort to keep her happy and engaged.  Overall, I really believe that she gave them her best, and that she performed accurately as well.  However, the process and dealing with her was so exhausting that it left B. and I feeling like we were hit by a truck.  The team is WONDERFUL.  I feel incredibly lucky to be able to work with such a caring, knowledgable, thorough, and capable group of specialists.

The general results [which I’ll outline further when I receive the written reports] were consistent with what we had thought.  They did move her from a diagnosis of PDD-NOS to Autistic Disorder, and we received our medical waiver, or “Long Term Care Professional Medical Information” form.  This gives us our diagnosis in official form, which is useful for insurance, SSI, and other benefits. Specific results came back low in all areas, but I don’t remember the figures.  They ‘weren’t good’, but those things don’t bother me as much anymore.  Really, I guess I’ve accepted that my child has a disability, and it is what it is.  I’d rather know exactly where she is, to gage how to best help her and build on her strengths.  Anyway.  Like I said, more on the specifics at a later date.

We had good conversation with the doctors about the biomedical/alternative treatments that are popular within the autism-community.  The advice given feels right-on.  Basically, they recommend we spend our time, money and energy on the treatments that have been clinically documented to benefit children with autism.  With whatever is “left over”, feel free to experiment with the alternatives that are safe.  [There are treatments that cause more harm than good]  On a note, Studies have still failed to prove that a GFCF diet improves autism at all.  Most recently, Princeton performed a very careful and detailed study in which  children were fed completely identical foods, some GFCF, others ‘normal’ [placebo].  The results showed absolutely no difference between the two groups with any autistic characteristics.  I was happy to hear this, because I honestly do not feel that I could realistically incorporate that change into our lives.

We’re working on creating a new bedtime/wakeup schedule, and are going to continue focus on getting her sleep cycles fixed.

The doctors told me at the very end of our visit that although they think Emma is very very cute and sweet, they can tell that she is very, very challenging and difficult to deal with; Terry’s been performing these tests for years, and rarely is there a child that makes the process as challenging for her as Emma did.  Then, they both told me that I am an absolutely excellent mother, and they are extremely impressed with how I handle Emma and my strategies.  Over and over, they said that, and that they don’t tell that to every mother that comes in.  It was fantastic; there have been times lately where I feel like she is going to drive me over the edge, and no one else seems notice the insanity I have to go through to function with her.  Family and friends rarely see picture in its entirety, and also don’t know how to see the invisible hoops I jump through on a minute-by-minute basis.

I asked if they would put it in writing for me.  [[grin]]

I don’t think they will.  But the positive feedback from those dedicated and experienced professionals was not only nice, but necessary.  I know that all mothers doubt their parenting, constantly questioning if they are really living up to their full ‘good mother’ potential…  I think with a special needs child, the pressure to perform is amped up a level or two.

Anyway, I’ve momentarily exhausted my verbage about Emma.  Phew.  Happy days to all you readers! ❤