tests and tears

I am not sure how to describe the experience of taking my beautiful daughter to a psychologist in order to determine her cognitive function. No matter how you dress it up, there is no way to take away the awkward gait of autism. I sat beside Scarlet as she failed test after test. I am sure that her scores will be less than "normal". It feels a bit unfair to line her up in such a fashion, but I suppose there has to be some starting place in order to categorize. Autism is always two steps forward one step back, this test was a flashback to three years ago when I took a then, three year old Scarlet to be diagnosed. After all these years of therapy, I can't tell that she did any better on this recent test as she did in the initial one. It is frustrating to work so hard and then be told that things just don't line up. I KNOW there have been gains, maybe their testing methods need to be more broad, but it is a bit of a gut wrencher all the same. Fortunately, I don't think Scarlet even knew what was going on, so at least I don't have to worry about her thinking she is less than normal. I guess it is just something that bothers me, because I see so much potential. It makes me wonder if I am just delusional, I mean, after all, these are people who know a lot more about the human brain than I do. But no matter how many of these tests she fails, I still can't settle into their validity. Maybe I will go to my grave with false hopes, but I would rather be cheering for Scarlet in ignorance than dismissing her to lifetime of scripted failure. And then there is always God.

What does it mean?

Last night I saw the rainbow video for the first time... I laughed and simultaneously asked "what is that guy on?" For those of you who haven't seen it, just youtube "rainbow" and you will run into it. Basically this guy finds a double rainbow in the sky and asks "what does this mean?" Check it out, you will laugh. I bring that up because I've had one of those days, except my thoughts are completely uninfluenced by barbiturates of any kind. Actually, a rainbow catching my attention, would have been a thousand times better! My musings came at the expending of a bird. I was minding my own business, pushing and pulling Scarlet through the Zehrs parking lot... (she takes a lot of influencing in the right direction) when something like a water balloon struck me in the head. Luckily, I had decided to wear my hat, because it was no water balloon. It was, well, a bird bomb, if you know what I mean. It was my favorite hat too. I don't know about you, but I figure a double rainbow in someones front yard happens probably about as frequently as being a bulls-eye for some bird's sick game. So, what does it mean? I leave that one to you.

I can't decide if I should also take the jittery librarians at the library as a sign. You know, today could just be a day of revelation. Like, maybe our family has a special aura to attract librarian concern...actually I know that to be true. It happens every time we go to the library as a family unit, well minus Paul, for some reason, he has a calming effect on the librarians. I don't know why the librarian shelving the books just to our left commented on the fragility of the windows in the castle reading area. I had my hand on Scarlet as she was climbing the chairs and leaning on the window. I was very purposefully taking up the slack, keeping her from thrusting her full weight against it. Well, maybe I could have looked a little distracted as I had Skye on my knee, my other hand wrapped around her holding a book and flipping the pages. I was reading a very engaging story about a mouse and his first day of school while trying to educate everyone on their colors and shapes. I might have shouted out that those graphic fiction novels didn't count as real books to Brynn. I thought I heard the librarian muttering something under her breath. At any rate, our family definitely creates an energetic nebulous in the library. I think this just means we are special, like prose in the rough just waiting to be interpreted. Yep, I should be smiling. I am smiling.

Another sign I am quite sure I have read accurately is the unmistakable parting of the bureaucratic sea of technicality. My speech path called to tell me that Scarlet's new high tech voice output device is in. She was shocked at how quickly it has come. Apparently they never come in this quickly. I told her about the power of prayer. This is a huge answer to prayer because we were going to potentially be without any voice output device as her current device goes back on the 31st of this month. Wouldn't you know that God had all that covered. I receive her new one on the 30th just in time for starting back into therapy on the 1st of September. Now THAT sign I can read without interpretation. Another one also appeared a few days ago. One of the many hoops we need to jump through in order to receive the funding for Scarlet is an intake exam at Kinark. We have an intake exam tomorrow... that is unheard of. She was able to take a cancellation so that we don't have to wait to get in for this intake process. All this means that September is looking like it is a go! So as for the "what does this mean" I am going to guess at the amazing goodness of a God that keeps me surprised...and perhaps has a sense of humour too...or maybe the hat wasn't so good on me.

A bridge

"In my distress I called upon the Lord; to my God I cried for help. From his temple he heard my voice, and my cry to him reached his ears." Psalm 18:6

"May we shout for joy over your salvation, and in the name of our God set up our banners! May the Lord fulfill all your petitions! Now I know that the Lord saves his anointed; he will answer him from his holy heaven with the saving might of his right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God." Psalm 20:5-7

Some can say, "its just luck... great coincidence", but saying such a thing would be like marveling at the gully made by a sudden downpour of rain and attributing its cause to the whistling of a stranger the night before. God has moved the hearts of Kinark like the torrential rain carves its own path through sand and rock. Anyone who looks at this blog, must note the distant sound of thunder and the newly carved terrain that has emerged just two days after fervent prayers have been sent to heaven. God has heard from his holy temple and made way for Scarlet yet again.

You will note that my last blog entry mentioned the dilemma placed before us as to Scarlet's IBI provider now that she has been approval for funding from Kinark. You will also note the absolute refusal I was met with when asking for Scarlet to be granted an exception so that she could continue with S.T.E.P.S.,(the organization that has been so influential in establishing sign and the voice output device in Scarlet's routine. ) I prayed, some of you prayed, and I wrote an email to the lady in charge of the region in which Scarlet belongs. I had tried several phone calls to no avail, so resorted to email although I was unsure of the address. The email eventually made its way to the lady in charge and her response only two days later was... we take each case individually, so of course Scarlet can stay with S.T.E.P.S. and have the Clinician in charge which we previously refused to give to you. That's all, no fight on my part, no long drawn out battle, just... ok, sure, you can keep your provider. This happened last week and I have been crazy busy, so I haven't had a minute to post it. But now I must shout it!!!! I have been witness to the wonder of a storm, I have seen the sky grow black and felt the earth move to the strong arm of heaven and have cried aloud for deliverance. I have fallen asleep at the top of a gorge, unable to pass to the other side, only to find a bridge built in the night by fallen trees and as I walk across them, I notice the name Jehovah Jireh carved ornately over their trunks. Instead of walking across, I dance, because God has heard my cry and helped me...

Abodah and sweet six

It doesn't seem possible, as I tuck Scarlet into bed tonight, that she is now six years old. Birthdays are such bittersweet milestones with autism. In so many ways, I had expected to be much farther along, but in so many other ways, Scarlet has surprised us. I heard a father of an autistic daughter once state that at first when your child is diagnosed you try everything and throw everything in the world at the autism in the hopes that it will go away, then at some point you realize that it doesn't go away and this is what you are left with. Sometimes Scarlet's future seems like a large open window looking out onto the world, with each birthday the fingerprints on the window get more pronounced and numerous making the future seem more clouded by autism. A sort of familiarity numbs the edges of the diagnosis, but it never makes it an easy bedfellow. Even as I celebrate the major accomplishments Scarlet has made this year, praising God that he has given so much of her back to us, a part of me aches for the Scarlet I will never know.

As long as Scarlet has been vocalizing, she has been saying a word, "Abodah". We have affectionately termed that word "Scarlet language" in our home. Imagine my surprise in finding out that there is an actual Hebrew word pronounced "Abodah". This particular word came to be as a result of the temple building going on in Israel at the time of Solomon. It was a word penned to express the particular worship involved in building the temple. It involved the concept of work as worship. The Israelites wanted to say that their work on the temple was an act of worship and so coined the term "Abodah". When Paul called me from his doctorate studies to tell me that his professor had just mentioned the word "Abodah" in his lecture, I could feel all the blood in my body drop to my toes. Is it any coincidence that the most frequently pronounced "word" in Scarlet's vocabulary is a Hebrew word meaning our work is our worship? I felt at that moment a sort of sanction in all the knocking down the doors for help, hours of cooking specialized food, repeated lessons on a voice output device, and well, yes, toileting. This "work" is my worship and my privilege.

This morning I was scheduled to be on worship team. I love to just worship with the band and the church, sing out loudly with abandon and declare how amazing God is. I am always so excited to offer this worship up to God and consider it an honor when it is my turn to use my voice to praise. It has been so long since I have had a chance to be on worship team because of several factors all stringing together to make it several months since I have sung. Today after first service (our church has a 9:15 service and an 11:00 service) I was met with a very foul smelling Scarlet. She had an accident in her pull-ups that leaked all over her church clothes. She really stunk, I mean gagging kind of stink. I tried to clean her but the stink stuck and I had no other choice but to leave early and take her home to the tub missing the second service. I was sad to miss out on worship team yet again, but in the back of my head I heard "Abodah". Really every day is an act of worship and my Scarlet is a cathedral that I build as an act of worship. So even though this sixth year comes with a bit of an ache, it is bound up by the thought that this autism gives me a chance to worship God in a profound yet simple kind of way.

"Take your everyday, ordinary life - your sleeping, eating, going-to-work, and walking around life and place it before God as an offering" Romans 12:1-2 (The Message)