same song, second verse...

In case you were wondering, "GF/CF" is a gluten-free/casein-free diet, in laymen's terms: No Wheat and No Dairy.
Also it means virtually all fast foods, prepared foods, candy, etc. is out. She barely eats anything anyway, and now two mainstays are out and all of our reinforcers. You wouldn't believe where all gluten shows up...almost everything has it in it, because it is in many soy products, soy lectin, etc. is such a common stabilizer in processed foods.
It will be a big pain in the butt. We obviously can't give Beans goldfish and then say, "Oh...none for you Abby!!" At least not while they are so young. Not to mention getting food out and getting family/friends to comply. Infractions are so easily comitted, even by the well-intentioned, KWIM? I was really hoping that we would not need to do this.

lab results trickling in

Ugh. It looks like the Dr. is going to recommend that we go GF/CF for Abby. Which means that all of us will have to do it.I am dreading it because it means a lot of work and, more than likely, a lot of battles too.
I don't know for sure, obviously I am no expert, but based on the reports so far it seems likely.
Ignorance is bliss.

On an up note, while the vitamin thing is still a battle every day, it is gradually becoming more of a skirmish, lol. Everyday we all seem to be getting better about it.

Gotta brag on my little sparkles!


First of all, thank you for your prayers. As always I know that God's hand is moving in our lives and thank you for bring so dilligent in your prayers for us. They are being answered everyday!

Now...
Abby is doing so great with her vitamins! I am SO prouud of her. She hates it and it is very hard for her, but she is doing it!!
Despite being encouraged to "hide" these supplements in juice, etc, I really felt like that was not the way to go with her. I don't think it's wrong or anything, but she is just too smart for that.
Anyway, my girlfriend from Austin left her kids with her dh and came up to help me on Saturday and she was a woman on a mission, LOL. She pretty much told Abby where it was at and then gave her the stuff: All the powdery vitamin stuff mixed with the Super Nutera and cod liver oil. No juice. A little bit of honey. It was no small feat, but Abby took it and I promptly took her to the store for a balloon (her fav thing. Carmen did it again on Sunday, doubling up her dosage so that all I had to get in her last night was the zinc, no biggie. I did it myself this morning and we got through it. We also had a shot today and she is really getting good about those, so yay for Abby! Bless her heart. It's not easy for her and she struggles against it, but she is doing it and not spewing it all out or kicking me or biting me and it is all about progress around here, LOL.
And now for Beans, I know this won't sound like much, but she has some real behavioral problems too. Mostly related to some sensory disfunction and her auditory processing disorder, but a real problem none the less. Anyway, her language has improved a lot lately and even better (at least as far as the mood in the home goes...) she is really working on getting control of herself and her outbursts. It is baby steps , but I am very proud of her nonetheless. Very, very proud of her.
That's it. I'm all done bragging now. Thanks for "listening!"

but then again while I'm here....

I had my bi-weekly team meeting with Abby's team of therapists today. I love them because I get to see her show off her new skills and it's my opportunity to note progress or concerns with her consultative ABA therapist and other therapists, but I always dread them a little bit because they are two hours long and very tiring too.
Anyway, today's meeting was great. Abby is doing all kinds of cool things like:
1) if you give her tiles with all the letters of the alphabet on them she can place them in order as well as make the sound that each letter makes phonetically.
2) If you give her 4-6 shades of one color (think blue paint samples in verigated shades), she can order them from darkest to lightest and state to which degre each shade is.
3) She has mastered tracing all the letters and numbers, except for "8," and is free-writing her name, both lower and upper cases.
4) She is doing great with unprompted initiations and learning to follow the rules of the classroom in her transition pre-school classes.
I AM SO PROUD OF HER!!!!!

gotta brag on my sparkles!

First of all, thank you for your prayers. As always, I know that God's hand is moving in our lives and thank you for bring so diligent in your prayers for us. They are being answered everyday!

Now...
Abby is doing so great with her vitamins! I am SO proud of her. She hates it and it is very hard for her, but she is doing it!!
Despite being encouraged to "hide" these supplements in juice, etc, I really felt like that was not the way to go with her. I don't think it's wrong or anything, but she is just too smart for that.
Anyway, my girlfriend from Austin left her kids with her dh and came up to help me on Saturday and she was a woman on a mission, LOL. She pretty much told Abby where it was at and then gave her the stuff: All the powdery vitamin stuff mixed with the Super Nutera and cod liver oil. No juice. A little bit of honey. It was no small feat, but Abby took it and I promptly took her to the store for a balloon (her fav thing). Carmen did it again on Sunday, doubling up her dosage so that all I had to get in her last night was the zinc, no biggie. I did it myself this morning and we got through it. We also had a shot today and she is really getting good about those, so yah for Abby! Bless her heart. It's not easy for her and she struggles against it, but she is doing it and not spewing it all out or kicking me or biting me and it is all about progress around here, LOL.
And now for Beans, I know this won't sound like much, but she has some real behavioral problems too. Mostly related to some sensory disfunction and her auditory processing disorder, but a real problem none the less. Anyway, her language has improved a lot lately and even better (at least as far as the mood in the home goes...) she is really working on getting control of herself and her outbursts. It is baby steps , but I am very proud of her nonetheless. Very, very proud of her.
That's it. I'm all done bragging now. Thanks for "listening!"
--------------------------------------------------------
but while I'm here.....

I had my bi-weekly team meeting with Abby's team of therapists today. I love them because I get to see her show off her new skills and it's my opportunity to note progress or concerns with her consultative ABA therapist and other therapists, but I always dread them a little bit because they are two hours long and very tiring as well.
Anyway, today's meeting was great. Abby is doing all kinds of cool things like:
1) if you give her tiles with all the letters of the alphabet on them she can place them in order as well as make the sound that each letter makes phonetically.
2) If you give her 4-6 shades of one color (think blue paint samples in verigated shades), she can order them from darkest to lightest and state to which degre each shade is.
3) She has mastered tracing all the letters and numbers, except for "8," and is free-writing her name, both lower and upper cases.
4) She is doing great with unprompted initiations and learning to follow the rules of the classroom in her transition pre-school classes.
I AM SO PROUD OF HER!!!!!

HIS mercies are new every morning!

I'll say it again....His mercies are new every morning!
How could I be bummed out when it is so beautiful outside today? I have the back door open and the AC off. I'm listening to good tunes. Chatting with you lovely people....
Praise him. Oh how he is glorious in the little things!

sometimes Holland really sucks

I get so tired of trying to do something that regular kids can do and it's fun, but for us it is a nightmare.
I am so worn out tonight. Physically and mentally I am exhausted, but my nerves are buzzing from the intensity of the last few hours so I can't relax. I should cook, but I can't bring myself to do it. I just can't. It will have to be a very early morning for me instead I think.
*sigh*
Maybe I'll type it up later. Right now it is just too much to relive, LOL. Nothing new happened, just more of the same.
((hugs)) to you.

For all of us who live in Holland

Or know someone who does....

I saw this online recently and I had never seen it before. I know it is cheesey, but I am feeling a little emotional after watching that movie tonight. I hope that you'll indulge me.

The Special Mother
by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his
instruments of propagation with great care and deliberation. As He
observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"
"This one gets twins. The Patron saint will be Matthew"
"This one gets a son. The Patron saint.....give her Gerard. He's
used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled
child".

The angel is curious. "Why this one God? She's so happy"

"Exactly," smiles God. "Could I give a disabled child to a mother who
does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea
of sorrow and despair. Once the shock and resentment wears off,
she'll handle it. I watched her today, she has that feeling of self
and independence that is so necessary in a mother. You see, the child
I'm going to give her has his own world. She has to make him live in
her world and that's not going to be easy."

"But Lord, I don't think she even believes in you"

God smiles, "No matter, I can fix that. This one is perfect - she has
just enough selfishness"

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally
she won't survive. Yes here is a woman whom I will bless with a child
less than perfect. She doesn't realize it yet, but she is to be
envied. She will never take for granted a 'spoken word'. She will
never consider any 'step' ordinary. When her child says "Momma" for
the first time she will be present at a miracle and will know it. I
will permit her to see clearly the things I see...ignorance, cruelty
and prejudice...and allow her to rise above them. She will never be
alone. I will be at her side every minute of every day of her life
because she is doing my work as surely as if she is here by my side"

"And what about her Patron saint?" asks the angel, his pen poised in
mid air. God smiles "A mirror will suffice"

open letter to my husband (whom I love).....

Honey,
I am so glad that you are in La Jolla, a locale that has been chosen as the most temperate place on earth. (It's been over 100 here for days now).
Before you left, when you bemoaned how much you'd miss us, even the tantrums (which I pointed out and you persisted in claiming you would miss). I said, "I know you will honey."
And when you cried about how much you hated to be away, I said," I know you do, honey."
And when you said, "I feel so bad that you will be on your own so much with so little respite,"
I said, "We'll be fine."
I meant it.
I did and I do and we are.
BUT, that said....
Please don't call me and tell me how much you will enjoy sleeping in late while the family is off yachting in Catalina. Especially emphasizing, "You have no idea how long I've been waiting to sleep in."
I don't? Life of Riley that I've led for the last 3 1/2 years?
Cause I've been collecting urine samples.
Please don't tell me you went surfing and how awesome it was. Not that I am not so glad for you, I am. But could the revelry wait til next week? Someone just $H!T in the bathtub...again.
Oh the La Jolla Beach and Tennis Club is even nicer when you go without the little ones? ("It will be so great when we all come out next year and Abby is doing so much better.")
I know.
It will be. I can't wait.
But in the mean time, I had to deal with my usual exhausting routine and my mother. Bless her, but I wish you could have been here for that dreadful DR. visit and the anxiety I had leading up to it.
In not so few words,
I love you honey and I AM REALLY HAPPY that you are getting this time. Your job sounds great to those on the outside, only the few on the inside know what it means to work so closely with the fabulously priviledged. It's difficult and unpredictable and often thankless.
But, and while I know you know this (though lately you seem to have forgotten) so is being a mom, esp. a mom to our girls. (and minus the priveledge)
So could you try a little bit harder to keep your current "misery" to yourself?
You know I love you sweetie.
kisses,
moi

What a week!

Boy am I glad it's over.
I haven't posted much lately. I had so much going on that I just didn't have the hootzpah to type about it, KWIM?
First off, hats off to all the single moms on the board, whatever the circumstances, I am getting a small taste of what y'all do and it is so tough.
Most of you know, that Jimmy is away, and while he has been able to come home for quick visits, much to my surprise and pleasure, I have been essentially on my own since July 3 and will be until August 21 (possibly until the 31) and it is tough. While my hour to hour schedule isn't that different, there are areas that are tougher. Like realizing at 8 pm that I don't have enough containers to pack my clients' food and having no way to run across the river to pick up some more without rousing everyone to get some. Or SHOOT! We only have on more overnight pullup? With an autistic daughter, that kind of excursion at bedtime can cause total mayhem...what to do? I find myself engaged in another prayer of thanks that at least I found a straggling swim diaper to make do with....I'm sure it sounds trivial, but even the slightest "change" can make for a meltdown like you would not believe, except for those of you who would believe it.
In addition to those everyday things, and what it means to cook 12-15 meals a day, plus the three for my family... I shop, cook, pack, label, invoice, manage the books, and clean, oh and deliver...All of which must happen between spending 4 hours a day minimum in commute between the girls' "schools." I got a new client this week, PTL, but "yikes" too...Then there is OT for Abby and coordinating more OT and now speech for my once believed NT child.....
And this week I have had to collect more urine than anyone who is not a lab technician should, and on a really specific schedule, and coordinate air mail pick-ups since it is all perishable data.
And let's not forget having to take my very, VERY fearful daughter to get 5 vials of blood drawn and then being given this insane regimen of nutritional and vitamin supplements, oh and B-12 shots (yes injections) to begin administering while we wait to find out whether or not a very intimidating dietary plan must be enacted. And wait to do the rest of the ordered tests, because I only had half of the nearly $2000 for tests that my insurance refuses to cover.
Oh...have I mentioned the money??? Oh, well I know I have before, but it is a lot...
I am quitting now, I actually could go on, but I won't, let's just sum things up with...It has been quite a week and I am so glad it is over. And praise God, that we got through it, with several not so minor victories I will report in my next thread.
This week, I am reminded again to that are many "little" things to be thankful for that I overlook on a daily basis. So a big "thanks!" to my heavenly father and all of you who pray for us regularly, because let me tell you , this week was made possible by y'all.
God bless!

post script
I really know that, by our estimation anyway, Abby and the rest of us are better off than 98.5% of families of children with autism. We truely are. It could be so much worse. We have been very blessed in more ways than I can list throughout this whole journey. I am not being a pollyanna, we really have been. This is not to say I don't feel down sometimes or question God, I certainly do those two things and plenty of other terribly unheroic stuff. Someday, I may post the letters I send out to our other prayer warriors that update them on what is going on. It is amazing to me when I read back over them, how far we've come. She is definately the hardest working three and a half year old on the block. And the heavens above have put in a lot of overtime this year.