A Picture Is Worth A Thousand Words

Zehrs has, I am sure, seen many a strange things.  The wonderful people who work in the photo studio have lots of experience.  Even with all the people they see, they seem to remember us as we make our yearly trek in search of a viable family picture.  One of those pictures with a rosy glow emanating from the paper.  You know the stuff memories are made of.   The kind you send to Grandma and Grandpa so they can show off all the cute grandchildren.  Um.... I think I need to readjust my picture expectations.

You see, no matter how co-ordinated we are, no matter how perfectly groomed, autism still seems to rip through the picture.  Autism does not like to look at the camera or that annoying quacking duck.  Autism has seen a very interesting spot on the wall beside it. Forget the status quo.  Smiling is for those less interested in the minutia around them. It is for those who don't find sitting down in one place a concerted effort.  It is clearly for those with a group mentality.

 I don't know why I have come to terms with the presence of autism in every other aspect of my daily life, but find it so shocking when it is present in the family pictures.  I guess it only reaffirms the death of a dream... its kind of like seeing a cousin that you haven't seen in a year and they have grown so much you don't recognize them.  Not taking a family picture for a year, seeing the changes in everyone, except the child with autism, it makes the reality slap.  It is probably a little vanity too.  I want people to look at my children and say “O my gosh, look how cute they are”.  There is no denying, Scarlet is a cutie, but she always has that pose that makes people think, there is something not quite right there.  In fact that is the truth.  A picture is worth a thousand words, I am just not liking the story today.    Paul is always very quiet after family pictures.  I use to wonder what was wrong.  Now, I know, he doesn't like the story either.   

On a more positive note, it seems that Scarlet is on her way to getting a voice output device.  Our meeting with speech therapist, liason from the Children's Treatment Network and our therapists from S.T.E.P.S.  Has led us to the begining of the journey toward implementing said device.  In fact, another family that S.T.E.P.S. works with has a beginning device that they might be able to lend us.  I am looking forward to this new step in her journey.

Postvirus survival mode

We spent the last two weeks fighting the battle of H1N1 (Or as I like to call it Hone None). I alone was uninfected. Have you ever seen that movie where the monkeys give humans a horrible airborne virus...Dustin Hoffman, and his estranged wife fight to cure all mankind. I think we could have done the sequel at our house. I could see the clear plastic partitions hanging from the ceilings in my childrens rooms as cries of "mom, WATER!!!!!" and other not so desirable sounds came from different parts of the house. As if the fevers were not enough, they were at some times accompanied by nausea and its cousin the Vomit. I won't mention the other cousin, but he came to visit too. The hacking, nonstop cough came nagging into my conciousness at every waking and sleeping moment. (I am sure it must have been a woman who had been up all night with coughing children who first invented Chinese water torture.) I have fought the battle of Hone None, been tortured at the hands of incessant cough. I am still a little jumpy...is there a counselling service for such things?

At any rate, we have passed the worst part and now everyone is limping bandaged from the smoke covered battlefield. The most frustrating part of this (besides the Hone None coughing torture) is that it has caused a regression in Scarlet. Anyone who has an autistic child will confirm that sickness usually does this. We have been fighting this past year and a half to rid Scarlet from the rather major viral overload that was present in her body two years ago. Most autistic children have such suppressed immune systems that they have a hard time dealing with the onslaught of viruses that they have been sent their way. (that in itself is another topic and quite controversial...maybe I will tackle it when I feel less jittery.)

When we first took Scarlet into her DAN doctor and had her blood analyzed under a microscope, it was very disturbing. Among other things, the Strep virus was floating around like a chain. I was quite upset when I found out what "that chain looking thing" actually was. We have been doing several things to help Scarlet's body fight off the viruses that she couldn't get rid off. Almost imediately after starting the Specific Carbohydrate Diet, her blood began to improve and we have seen steady changes in her as we have helped her body heal from the inside out. It is frustrating to have her come so far only to see a virus seemingly wipe those gains away. I am sure that I am being a little fatalistic, probably post traumatic Hone None syndrome, but I feel like screaming NOOOOOOOOOOOO!!!!

Scarlet just had her permanent EA assigned to her today, Her name is Nicole. Nicole went home early with a black eye and a bite on her arm.... I hope she is there on Thursday! Among those things lost in the current regression is tollerance. She is tantruming more and hurting herself at will.

On a lighter note, I am meeting with a Speech Therapist and Augmentative Communication Direction at Childrens Treatment Network along with a couple of therapists from S.T.E.P.S. to discuss getting Scarlet started on a voice output device. First Scarlet has to qualify, then if a committee deems her elligible she is put on a wait list for funding. I have been told this wait list is minimal...hopefully it is. I will know more tommorrow, but S.T.E.P.S. has been forming her therapy around getting such a device. It would allow Scarlet to talk through a computer. It starts with simple things like yes and no and moves up to more advanced communication. I know most Mommy's don't like the word "no" especially if they have a two year old at home, but it is such a powerful word. I would like to hear Scarlet's "no's"

Something on the horizon

There seem to be so many changes lately that I can hardly keep up with them in my blogging time. There seems to be an awakening in Scarlet lately. I found out today from her therapists that she knows some of her colors; purple, pink, and white. Now aren't those just the colors you would suppose a girl would want to know first! I am not surprised that she knows things like this, just taken back when she reveals it. I have always known that Scarlet is alot more aware and competent than people give her credit for, but to have her show it astounds me... it makes me want to say, "See, I wasn't wrong, she really is in there!"
Last night when I was tucking her into bed, I was giving her our bedtime kiss routine, an eskimo kiss, a butterfly kiss, and a mommy kiss (this is usually just a kiss on the cheek). After I kissed her on the cheek, she looked up at me and pulled her little head up to mine, then she planted a kiss firmly on my mouth! Then she smiled and giggled because I made such a big deal of it. My little girl who was lost to the world, gave me a kiss and knew why she was doing it! I am really looking forward to hearing her say "I love you, Mom" someday, but I think that was a close second.
A few days ago, Scarlet started chanting the words "go, go, go" over and over again. She has been making several different sounds lately. Her babbling is actually starting to sound like parts of words. When she started saying "go" I wondered what we usually paired the word "go" with around our house. Then I realized that it was usually associated with the bathroom. "Let's go to the potty, washroom, etc" is usually repeated twice an hour throughout the course of a day. When I said to her, "Scarlet do you need to go potty", she said "go, go, go, go, ptty" Then she said it again. I took her and she had to go! Other times she has said "go, go, go" and paired it with her washroom sign!
This developement is tantamount! The very thing causing her the most angst lately has been toileting because she wants so much to be trained. If she has an accident she is unconsolable for a while and usually becomes oppositional about the washroom for the rest of the day which just escalates things because it leads to other accidents. If she could have the power of telling us when she needs to go, instead of depending on us to take her every 45 minutes it would change her life. To see these requests for the potty emerging, even if they are irregular is so positive!
On Halloween night, I was offering her some treats that were compliant with her very strict diet. I had some ice cream and a bar made out of nuts and dried fruits. I assumed the ice cream would be her favorite, so I gave her some of that first and then as an afterthought included her "Lara bar". After one bite of her Lara Bar she kept pointing to it every time I tried to feed her some ice cream. She has never done that before!
Tonight at supper, I asked Scarlet if she wanted a drink. She shook her head yes!
I think that I am seeing land on the horizon. I hope as our ship gets closer that it is an inhabitable place full of life!
Every night I pray over Scarlet. I say "God, I know that you have made the heavens and everything in them. I know that nothing is too difficult for you. I know that I am nobody really, but you have made me your child through your spectacular grace. I just want you to know that I know you can do it. I am not going to quit asking because you are the only one I can go to. Just wanted to remind you that quietly and hopefully, I trust you. - Amen"