Thursday, October 28, 2004

Say it ain't so

Here is what has been going on with us. An update, I guess.
We are finally concluding that maybe more is going on with Emma Jean than we first thought. That perhaps we did not, in fact, "dodge a bullet." (Statistically, it is pretty unlikely that in twins, even fraternal, one would be dx'd on the spectrum and the other would be "typical.") It breaks me up to think that we may have been sacrificing Emma Jean's needs for Abby's, but I think we might have. Until now, just today actually, I could not bear to think that both of them were on the spectrum. (It's all about me right?) And Abby's issues were far more crippling to her as an individual and to us as a family unit, at least at the time we began this journey. As Abby has improved and gained so much ground, the gaps in Emma Jean's development have become more apparant. While she has improved in some areas, the gulf between Emma Jean and her "vanilla" peers is ever widening.
Today, I concluded that she may need some ABA. That she might need to be formally evaluated. Jimmy agrees. I was so scared to talk to him about it. At this point, neither my dh nor I feel like we need a label, per se. I would be surprised if she met the criteria for an autism dx. If she does, it is incredible justhow differently it has presented between the two. But, it is all about getting the help she needs. So...
I don't know. This is a conclusion I have really just come to in the last day. I've been praying for some clarity and for help on how to be a better parent to Emma Jean specifically. An encounter with a SLP with a background in ABA, who knew nothing of Abby or what therapies we have her in, (she was supposed to be a sub for Emma Jean's regular SLP..(there's a PTL in there I'll name later) said a few things that really brought it all together.
I don't know but, "If it looks like a duck and quacks like a duck..."

Anyway.....that's the news from the front.

Saturday, October 23, 2004

be careful what you pray for

LAB results:

my prayer: "Please God don't make us do GF/CF! Please?"
HIS answer: "Okay."

I finally was able to keep the appointment. We are going to add some new things to her vitamin regime and up her Taurine. Also, he has orderd another urine sample to test for metals. Collection cup, her we come.Oh well. After she got over her fear of the "little cup" last time, she was po'd that she didn't get to use that everytime. My little weirdo.
The bad news is that because of the extreme yeast overgrowth in her intestinal tract, he wants her to go on the candida diet which is a real pain in the butt.We will also be removing casein from her diet on a trial basis and adding probiotics to her ever expanding vitamin regime. We will begin on Monday. I dread it, but hopefully it will make her feel a lot better and we'll see even more improvements in her eye-contact, attending, etc.

Anyway, that's it from the front. Anyone else ever tackled candida?

She did great this morning with the new additions to her vitamins.
I can't believe how well she is speaking now. Her language skills have totally lapped Emma Jean's.

We are going to let her have a bit of a "free-for-all" this weekend. Beginning Monday, she can have no sugar, no processed foods, no high-glycemic index foods (potatoes, pasta, white rice), no dairy, no crackers, nothing with yeast in it....and so forth.It is going to be hard, I fear. We are going to start talking about how going to Sonic and Mc Donald's makes your teeth hurt and need to go see the doctor a lot, and means more shots. etc. I don't know what is going to happen. Poor Abby. Poor Beans too.

Friday, October 08, 2004

calamity jane

A funny on myself....

Last week, a mother of one of Abby's "classmates" at BI phoned to invite Abby to a b-day party. It was to be at a farm, but during the therapy day and it also coincided with a doctor's appointmnet I had. The appointment was with the allergist to get the lab results for the testing we did on Abby back in July (!!) and one that I had already had to cancel once when we thought Beans needed ear surgery. Anyway, I checked with her therapists and they felt like some good therapy opportunities could be made during the party so a therapist was assigned to come with Abby. Then Jimmy agreed that he could be there so that I could go on to the Dr. appointment. Cool right? Everything is a go. SO I get up that day at 4am to label and pack out my clients' food so that the deliveries that I had to make can be done after we drop of Beans to school and before the party, which is about 45 minutes NE of me. I am dressed for business. One of my clients offices in the nicest building in Dallas and I try to look somewhat polished when I am making deliveries to him. I was wearing a wrap sweater, not tight at all, but loosely form fitting, nice slack-jeans (KWIM?) and pink suede driving moccasin mules. I am also wearing make-up and a little jewelry, including a cross necklace. (I promise these details become significant later). Anyway, we run into Target to pick up a present for Rifkiv, and Jimmy calls to say that a luncheon for one of the kids' classes has popped up and he cannot be at the farm. Ugh. I call the doctor to reschedule (AGAIN!!!!) and off we go. There is no time to go home and change. I am not too happy about it, but at least I had already made my deliveries. We get to the farm and Abby is immediately beside herself with unadulterated joy! She was simply thrilled and I was so sad that daddy was not there to see it. She rode a pony (I am totally looking into equine therapy now!) and did all kinds of fun things with the animals. She did well with the crowd and the strangers and different surroundings until the end so both her therapist and I were very proud. Anyway.....
It had rained a lot here the day before so it was muddy. VERY muddy. Did I mention what I was wearing? So there I was tromping around in the farm muck and mud in my suede shoes and nice clothes. But that was not the worst part. Dirty shoes I can deal with. I was a little embarrassed because I am sure the farm owner must have been like "Silly city-slicker," and I do know better, but oh well right? Did I mention before that I was the only gentile there? And I mean I was the only non-Orthodox Jew there. Here I was dressed in my clingy (but totally modest in any other circumstance, I promise!!) wrap sweater with a group of ladies in long skirts, no make-up, shirts just shy of turtlenecks, and head coverings. Oh, and don't forget the cross necklace!!! I felt like I was wearing a scarlet A. I am sure they all went home and were like, "Who invited the Whore of Babylon???" I have never been so self-conscious in my adult life. OMgosh.

And don't even try and tell me no one noticed. Two of the ladies were nice and of course Rifkiv's mother was wonderful, but the other ladies were just this side of treating me like I had the plague. Good grief. It was so uncomfortable. Thank God Abby's pleasure with all of the animals kept me from totally curling up and dying from embarrassment. Sheesh.
  • International Day of Prayer for Autism & Asperger's Syndrome