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)

Hip Hip Hooray!!!!

Ahhh! summertime. Nothing beats the long days at the beach, road trips, smells of people grilling out in the neighborhood, and fireworks. This summer we decided to forgo Scarlet's IBI therapy as we were pretty busy and felt she needed to have time to just be a kid. We left for Tennessee as soon as school was over and spent a week with Nana. Our good friend Mary accompanied us and made the trip even more fun. Scarlet saw her first fireworks display in the heart of Nashville on the 4th of July. I was worried about the noise level, but she laughed and looked on in awe with the rest of us. The great thing is she was oblivious to the brief stint of time we spent in the projects looking for a way out of a gridlocked city. There were days at the pool and a trip to the aquarium in Chattanooga. She took everything in stride. We came back to Ontario for Day Camp at the church where she participated in the mornings and a couple of afternoons. She LOVED Day Camp and was waiting very impatiently for us to leave every morning. It was so great to see her excited about the songs and activities. We left the day after Day Camp for Prince Edward Island and managed to arrive just for her birthday. Scarlet was so excited about going to PEI that she even said the words "PEI" twice in the car. We spent many hours at the beach and took a day at Avonlea village which is always a highlight. We went to Charlottetown on the rainy day and watched the young theatre company put on their musical about PEI history, the smile on her face was worth the whole trip. A man sitting beside us happened to have a foundation in PEI for autism, the only one on the island, he commented at how well she did. She sat for the whole presentation... with a lot of help from me. This is something we would have avoided just two years ago for fear of making a scene. It is just so nice to be able to enjoy some "normal" activities as a family. Perhaps the best part of this summer story is what happened upon our arrival home. We came home to some messages on the phone, one of which was from Kinark, the government agency that is responsible for funding Scarlet. She has been on their wait list for funding for three years... I found out today, that she has now reached the end of the wait list and has been taken on as a funded kid... we have finally arrived!!!!! Hip Hip Hooray!!!!


I have mentioned in the past that Scarlet has been given a voice output device. She was started on a device called the GoTalk which is very low tech, but good for starters. It has room for 5 pages of choices. Her choices include her favorite t.v. shows, her favorite books, and some therapy pictures. Scarlet's speech path put her in for a trial period for a high tech device called a springboard light. Scarlet has quickly outgrown the capacity for the GoTalk and needs another device. We were given this high tech device for two weeks to show that Scarlet could use it. During this trial time, I was to mark down every time she used the device and how it was used. The new device was like a porsche! It was super quick and had tons more choices. Scarlet took to it right away and was using it well. Our trial period happened to fall during our trip to Nashville so we took it with us wherever we went. On our way down to TN we stopped at a rest stop to eat our packed lunches and had the device with us. There were several people around us eating their lunches and they had noticed what we were doing. As we were finishing up I told Mary, our wonderful traveling buddy, that I was just going to feed Scarlet pears and then we could go. At this point, Scarlet pushed the "eat" button which audibly says "eat" followed by the "pears" button so that everyone around us heard her just respond to what I had said. You could hear the gasps from the people around us as they were amazed by a little girl who seems to have nothing going on, but is more than meets the eye. Unfortunately the new device had to be returned and we were left without a voice out put device at all, but thanks to Jesus who always meets our needs, and a little gentle persuasion, we were loaned another Go Talk until the end of August. Unfortunately it takes a couple of months for the "committee" to decide to loan us the springboard light, but we are waiting on God, not them, and his timing is always just right.

Was so!

Sometimes, autism makes its way through the woods in tennis shoes, other times, it stomps around in giant's boots. It has been stomping lately and a visit last week to the DAN doctor showed some concerns that her gut is not healing like it should be. That being as it is, I have once again been divinely startled. Those times that God flashes out his love to me like a strobe light always takes me off guard. I am always surprised that He could care. I have been trying to convince everyone around me that angels were sent to aid me last week, but no one believes me....ok, it could have just been plain ordinary humans doing something they didn't understand the significance of...but really isn't angels so much more, well, startling?

Last week, I had to make it to the grocery store in order to get something to eat for supper. It was 4:00 in the day and by this time, Skye, my two year old, is far beyond the reaches of good behaviour. It is also a difficult time for Scarlet. I went to Price Choppers because it was close and cheap, unfortunately, I forgot to secure a 25 cent piece as dues for my cart. I never have the right change when I am at those pay for your buggy kind of places. I did manage to find dimes and nickels enough to equal 25 cents and I was hoping to find someone who would trade money with me. This particular afternoon, there were not many people in the parking lot and the carts were located just outside of the store. A couple of people came in and out, but I was still trying to unload my girls without incident. As I was mustering up the courage to take on this shopping task, mentally working out all the possibilities, I noticed a lone FREE cart sitting sideways on the sidewalk. Instantly I sped into action, whipping of the seatbelts in Skye's car seat, whisking her like a monkey to my hip, running to Scarlet's side and heaving her out of the door with my free hand. This was the amazing race and I was going to win......a free grocery cart!!!! Except, a nice little lady, who had no one to help out of her car, managed to rejoice in the conquest of the aforementioned grocery cart just as I rounded the corner of my van yelling "quick feet!" to Scarlet.

I was not able to corner anyone for change so I decided that I should just hurry through the store, get my three items, and get home....maybe not a realistic challenge. I realized as I grabbed the grocery basket, that I now had no hand left for Skye. Scarlet can never be let loose in a grocery store, it is certain mayhem. Skye, is two and very capricious. We tried getting pears into a plastic bag, Skye who I just discovered was shoeless, was running around looking for things to eat on the floor, Scarlet was looking for stray produce to grasp with her eagle like swiftness and I was remembering why it is impossible to get pears into a plastic bag with just one hand. The realization was dawning that if I kept this endeavor up, I would likely be legend in Price Chopper lore for many years to come.

I let go of Scarlet in order to at least fill my bag with pears, she ran away, I ran after her leaving Skye squatting on the floor eating a grape and looking for a more interesting place in the store to discover. I grabbed Scarlet, tugged her over to her sister, threw skye on my hip, scolding her as I looked for my displaced basket and decided never to try this again. I was looking to make my way out of the store and was planning to stand and beg on the sidewalk until I found a buggy. I felt like crying, but big girls don't....I should have been praying, but God saw me without my screaming....or maybe he just heard the desperation inside my chest. At any rate, two women entered the store with a grocery cart and looked to be interested in shopping. I saw them because they were in the way of me getting out of the store. I was going to go beyond them, when they promptly left the buggy where it was and exited the store... I felt like a kid who had just found a 20 dollar bill laying on the side of the road. I looked around, looked around again, and realized that this was just a gift. It was God being God. I was divinely startled. I feel like I should have it tatood on my forehead "divinely startled". So, what do you think, angel or human....I've got my suspicions.

Springing forward

Life has been in fast forward these last couple of months. The introduction of the voice output device or "GoTalk" as it is named has been a welcomed and transformative addition to Scarlet's augmentative communication. Right now, I am the only one holding her back. As soon as Scarlet's speech therapists gave us the necessary pages to add to the device, Scarlet has sprinted out of the communication gate, never to return again. At first all Scarlet wanted was t.v. Now she is actively requesting, "eat", "drink", "ball", "brush", "book", "music" and "washroom". When Scarlet requests "book" I place a page into the device with pictures of her favorite books. When she presses those pictures, the titles of the book is said for her. She is beyond excited about this. At night, when we usually do our longer book readings she looks for the GoTalk as we near the end of her book in order to make another choice. It is funny, I knew which books were her favorite, but I didn't know which ones among those favorites would be her prefered books. It is just nice to find those little things out!
In addition, she is now able to choose which movies she would like to watch. She was getting horribly frustrated with her sing-along-song videos as they were always what we played for her. They had been her favorite for a while, but now, she wants Tinkerbell or Elmo. It is so exciting to watch her dance around with excitement at the power of choice.
If I were able to just let her request and immediately respond to her requests (which must be done in the initial stages in order for the device to be motivating) I feel sure that Scarlet would be communicating non-stop, just like her brother and sister. The great thing about GoTalk is that there is no whine voice... my silver lining.
An amazing thing is starting to happen with Scarlet this past week. As she is pushing the button she is starting to say the word represented on that button. "Ball" has come out very clearly and today she said the "T" part of the word "t.v." before pushing the button. We ran all the way downstairs to the "t.v."! I should also mention that she is using the GoTalk at school as well.
Scarlet is doing so well with the device that her speech therapist has ordered the next one up for her. She should be getting a better device in July and the great news is that it is leased through the government, so there is no cost to us. This device will allow Scarlet to have more communication capability. We have neared capacity with the GoTalk.
I can only say thank you to God for the progress we have been seeing, it is so exhilerating to watch Scarlet take off in this area.
Another great thing has been happening. Kinark, the government agency who will eventually fund Scarlet's therapy, has told me that she is now only number 10 on their wait list. This could still take months, but the end is near. Scarlet has been on this wait list since she was three years old. She will be six years old in July. This will mean that at least 20 hours of IBI therapy will be funded by Kinark!!! This is more therapy than we are now receiving. The more IBI the better for progress.
It has been such an amazing process to take each month and pray, saying "God, you know what we need!" then watch Him prompt someone to take care of Scarlet's therapy. He does truly take care of our needs through his people. We are humbled and awed every time.