Thursday, April 26, 2012

Around and around

It's so hard to trust.  I first asked for a PST meeting when my daughter was in Kindergarten.  I asked for another one when she was in 2nd grade.  The next one wasn't until 6th grade this past November.  The first one yielded nothing, as did the second one.  The third one led to a "PST plan" that was created in December.  In January, the PST team referred her to the IEP team; in February, the IEP team determined to evaluate her.  In March, she withdrew from STEM and switched schools.

My daughter's IEP meeting to review evaluations and determine if she is eligible for special education services was today.  She's not eligible.  She has been referred back to the PST team to develop a 504 plan.


Tuesday, April 24, 2012

Too many changes

We have made so many changes to help my daughter over the past several months:  diet, vitamins, home strategies, meds, school.  I don't know which change is responsible for what.

Of note, though, is what happens when my daughter goes off the diet (free of gluten, casein, corn, and soy).  She was "off diet" five of nine days.  The behaviors that have followed have been ugly.  (I started this post awhile ago and came back to it today.  I had to cut this ending to the first paragraph:  "...but I can say that at this moment, we are better than we had been."  It had been true prior to the build-up of five days' worth of gluten, casein, corn, and soy; now it's a little sad to be back where we were a couple of months ago.)

I don't know if I mentioned that we started seeing a DAN! doctor up in Baltimore in November.   He was the one who recommended eliminating foods and starting vitamin therapy.  It's a lot of work, but after these past days, I can say that the diet makes a difference.

Since last Friday's appointment in Baltimore, I now have to learn how to administer shots of methyl B12.  We tracked my daughter's response after two shots at the doctor's office:  two to three days of comparative mellowness.  She even took me by the hand to show me things in a store.  My do not touch daughter actually reached out to me.  If that's not compelling, I don't know what is.

In some ways, we truly are better than we had been.

However, prayers would be welcome.


Monday, April 16, 2012

Support

My daughter's situation worsened this past summer and through the fall.  It took me a long time to talk about it.  It seemed so very different from my son's situation despite the many similarities, and the stigma against mental health issues still exists.

Once I started talking, I found support and prayers.  I'm so grateful.

However, I've got to say that I'm tired of being the one on the receiving end of support that is amended by, "Of course, it's nothing like what you're going through."  I don't want to be that one, the person in maximum crisis.  I want to be normal again, to be able to talk to a friend without crying, or rather, without any reason to cry.

That's when I realized that I've done the same to other people.  I've made those same comparisons out loud to friends in need.  Maybe it bothered them, maybe it didn't, but I'm sorry I've done it.  I hope to be more sensitive in the future.


Thursday, April 12, 2012

Items

1. My daughter transferred a month ago.  People ask her how she likes it at the new school, how she's doing, etc.  Her response is typically a shrugged, "It's okay."  People ask me how she likes it, how she's doing, etc.  I have to say that it's really hard to say.  Most of her responses are tepid at best.  She seems to be having trouble socially, and it's pretty clear that she has only one friend.  However, according to the computerized grading system that our district uses, she's doing her work, is turning in her homework, and is getting 100s on most assignments.  Right before she transferred, she pulled up her grades and managed to get a decent report card for the third quarter, which came out yesterday.

2. I'm heartbroken for my friend.


3. I have to schedule a bunch of doctors' appointments NOW to fit them in before the end of the school year, which, according to yesterday's press release, is now a week earlier than it had been because we didn't use any of our snow days.  This also means that I'm facing the anxiety-laden reality of having to fill 10-1/2 weeks of summer.  At 12 and 14, my children have long since passed the stage of being happy with bubbles, sidewalk chalk, and the sprinkler.  I'd love to send them both to sleep-away camps for a couple of weeks...

4. Frivolous:  I dislike housework.  And menu planning.

5. This year I cut back on volunteering.  I don't lead my daughter's Girl Scout troop anymore (after three years), and I'm not volunteering at AWANA this year.  I still have the Autism Spectrum Support Group, CACSE, and the LDA, but I'm going to have to cut back from some of them, too.  It's another cost of addressing my daughter's needs.  (I'm not blaming her for my cutting back; I just have to focus my time and energy differently now.)

6. I'm upset with myself for not doing something that I had wanted to do yesterday:  Speak at the Board of Education meeting about April's being Autism Awareness Month.  With the newest CDC numbers out, schools need to recognize that patchwork "programming" isn't enough.  They have to work more efficiently and knowledgeably to address the educational needs of this population.  Not that I would have said that..  My saying something about Autism Awareness Month during the "Public Comment" portion of the agenda would have fit in well with the "Recognitions" agenda item, which included presentations about the 2012 Week of the Child and the Month of the Military Child.  I didn't do it.  I should have, and I didn't.

7. Daisy makes me happy.

Monday, April 9, 2012

Hearts

My friend lost her baby.  She was just starting her second trimester.  My heart hurts so badly for her.

Matthew's life was a blessing; his passing tilted my world.  He made me want to be kinder, gentler, more sensitive.  He helped me learn to pray.

Luke's life is a blessing.  He makes me celebrate joy in his baby and toddler discoveries.  He soothes his mother's heart.

This baby's life was a blessing.  S/he opened hearts to more love.

All these babies have been blessed, blessed to have known the mother love of my friend.  Dear Lord, please comfort my friend now.

Monday, April 2, 2012

Awareness

Today is World Autism Day -- raising awareness about autism.  April is Autism Awareness Month -- raising awareness about autism.  I coordinate the Autism Spectrum Support Group of Southern Maryland.  I live with autism, diagnosed, undiagnosed, and now, after receiving results from my daughter's special education testing, "highly likely."  I am aware of autism every single day.
Current numbers from the CDC show 1 in 88 children affected by autism.  If you know me, you know three.  I'll wear blue today, light it up blue today, and post multiple pictures and links about autism today.  And live in awareness of autism 364 more days before World Autism Awareness Day 2013.