Alchemy

I was at a mommy group today. During our group, the question "What has been one of the greatest dissapointments of your life?" was asked to all of the mommies at my table. Immediately, I thought of an audition that did not get me the part, one that I really wanted... Slowly it dawned on me, as the other mommies were chatting, that autism is no longer categorized as a dissapointment to me. Not that I don't have days when I really, really wish things were different, but God has so turned the situation around for me that I no longer see it as a negative. When I see my Scarlet engaging with life in her uninhibited, happy way (granted she did take a man out in Goodwill this week-He had a really great tummy, she couldn't help herself, but forgetting that one) I see such a gift. When I reflect on all the ways God has shown up in our situation, I feel so loved. When I think of all the ways Scarlet has taught me about what really matters, I feel so grateful. When I think of all the ways I have learned to trust... well, autism takes on a decidedly priveledged dress. I have prayed that God would take this ugliness that was thrown into our lives and turn it into something beautiful. I realized today, that he has answered this prayer. Only God could work this kind of alchemy.

"All things work together for good for those who love him and are called according to his purpose" Romans 8:28

It takes a village!

I started out my parenting journey, pretty confident that I could do a decent job of it.... That was before reality hit and I realized it is much harder than it looks and nothing is as black and white as it seemed to be when I was on the outside looking in. When a special needs child comes into the picture, all the knowledge you had banked on as a parent, knowledge that helped with your typically developing child, all that knowledge becomes a foreign language that no longer translates to your particular situation. There are still so many things that I have no idea how to remedy. Take Scarlet's hitting for instance. Scarlet hits a lot, for many different reasons. Often it is just a sensory need to feel her body in space and know where she ends and another person begins. Sometimes it is because she is excited and doesn't know what to do with her body. Sometimes it is to get someones attention because she doesn't have the words to call them. Sometimes it is because you are her little sister and she really likes hearing you scream. How do I punish her for trying to find out where her body is, or trying to communicate with someone she likes? It is a fine line between hitting her sister for enjoyment and trying to show her how excited she is to see her. How do I explain to Scarlet's brother and sister that her hitting isn't all malicious? How do you explain to a two year old that her sister is just loving her when she hits her.... boy that sets her up for some dysfunctional relationships!!! Theses kinds of issues still elude my parenting prowess and I just hope every day that I am not setting someone up for a lifetime of therapy.

I say hitting is just one of the issues because there are many. Toileting is another issue that takes on a life of its own with a special needs child. I went all out with Scarlet about a year ago in this area. No pull-ups, taking her to the bathroom every 15 minutes, then every 30 minutes, then every 45 and so on until she was doing fairly well. When she started school, however, all skills were lost and we regressed back to pull-ups. It was extremely taxing to maintain her toileting regimen. I felt as if I was holding onto the last vestige of my spider-web thin sanity for weeks as we went to the bathroom (all four of us when we were out of the house) every 30 minutes... then dealt with the accidents when and where they occurred. I have felt awful for letting her toileting slide, but I felt it was either my sanity or toileting success, and I must confess self-preservation won out on that one. Now, as I consider restarting the toileting regimen, I am plagued by ghosts of smelly, messy, stressful memories. But, toileting success is a very important part of being independent and I know Scarlet feels badly about her lack of success. It is at this point in my journey that I am so glad for the support that I have around me. I am finally feeling like I have access to the kinds of supports I had wanted from the very beginning of the autism diagnosis. I find that as I lift my wilting head back into the toileting fray, I am supported by an army of professionals who are making toileting success a, well, success!
Scarlet's therapists have always been great about toileting, but this year her EA is on board and doing amazing with her at school. Today she had a dry pull-up all afternoon at school. This is such a huge success and one that Scarlet is keenly aware of having accomplished. I feel like it may actually be possible to take on the toileting battle again. As I get older and wiser I find that certain sayings become more meaningful. It takes a village to raise a child is quickly becoming one of them.

The Eyes of the Heart

One of the things that became evident early on in our journey with autism was the fact that we were not going to be able to do this alone. Fortunately, in this country, there are several services funded by the government like speech therapy, occupational therapy, resource teachers, EAs, among others. (I won't address the frustration of the waiting lists at this point) Suffice it to say, from the moment we received our diagnosis, we have had the privilege of allowing several new people into our lives, all with their specific ways of handling situations, behaviours etc. It didn't take us long to realize that not all professionals are created equal. All therapist, though no doubt mostly all well-meaning, fall into the category of visionaries or realists. My encounters with the realists have always been fraught with jagged emotions. Once these emotions are processed they give way to a quiet determination that Scarlet will not meet with their low, unfeeling calculations. These types of professionals are hurricane force winds blowing our little fishing boat entirely off the course of hope. Even now, three years into this process, these realists are difficult for me to navigate.

The other type, the visionaries, well they are the ones that find our little boat floating and point us in the direction facing the sun and show us a better way to steer. My friend, Tony Elenburg, wrote a song called "The Eyes of the Heart" in it he says, "when you see through the eyes of the heart, you can see a rainbow, when others see the rain, when you see through the eyes of the heart you can see more than eyes can ever see" I am so thankful for the professionals in our lives who are able to see through the eyes of the heart. And, indeed, when they describe my daughter and her possibilities, I feel like they know her like I do. S.T.E.P.S. has been one such organization (our IBI providers) who have been a constant source of encouragement. Recently, when we received funding from the government for IBI, we changed Clinical supervisors with S.T.E.P.S. to a lady in Whitby named Sandee-Lee. Part of the red tape associated with such a funding agreement from the government is an assessment by the new Clinician in charge. This clinical supervisor then writes up the programming for IBI... writes out the things that Scarlet should be focusing in in her therapy and provides instruction on how these things should be done.

After our last visit to the Kinark provided psychologist who did the cognitive assessment, I was a bit raw at the thought of yet another assessment that lined Scarlet up against all the other kids with autism and rated her in comparison to all the "others" with no thought to her capability to learn and improve. I was in for an entirely different experience with Sandee-Lee. Laura, the owner of S.T.E.P.S. accompanied Scarlet and I to Whitby. She prepared me for the fact that Sandee-Lee might decide that pursuing language development with Scarlet was a mute point. She also reassured me that if anyone would see the possibilities it would be Sandee-Lee. You can imagine my surprise when Sandee-Lee said that in her opinion we shouldn't give up on pursuing more words from Scarlet. She explained that Scarlet is making all the necessary sounds to form the earliest words that appear in an infants vocabulary. She explained that when babies start making these sounds, the way they learn to form them into words is based on the responses they receive from the people around them. For example when a baby says "mamamama" everyone, especially mama, goes crazy saying things like "she just said mama etc." She thinks we should try similar strategies with Scarlet, so that when she makes a sound like "ba" then we go crazy saying, Scarlet you just said ball, bring her the ball and play with her. After years of thinking that I should likely resign myself to living with a non-verbal child, her words were like fresh air rushing into a sealed tomb.

Scarlet's programs in IBI have now changed to focus on her attending to instruction, making sure she makes eye contact and follows through with instruction before being provided with a reward. I am so thrilled with the direction Scarlet's therapy is taking and feel optimistic about Scarlet's vocabulary. Also, Scarlet, continues to amaze us with her voice output device as she requests food and books and TV. As we choose to see the future through the eyes of the heart we look out at the palm trees jutting out on the horizon and hear someone shout "land ahead".

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.

More

So Scarlet has seen two more signs added to her repertoire this past week. First she signed "break" to her therapist to indicate that she was ready to have a break from her work. She had a very long day of therapy and was tired of working. After a long tantrum, she told her therapist that she was ready for a "break" by signing "break" when her therapist asked her if she needed to go upstairs. Also, Scarlet has been signing "brush" with her therapists, but never with me. The other night at the dinner table, she signed brush and was so delighted when I went to get the brush and brushed her hair. This is something new I have learned about Scarlet since she has been able to communicate more to us. She loves having her hair brushed. Another really great thing happened last week. Scarlet pressed a button for washroom on her Gotalk device and proceeded to go to the washroom. It was a great moment because Scarlet has come so close so many times with actually being toilet trained, but in the end the inability to communicate her need to go has caused training to halt. Hopefully, we will see more of this initiation!!!!

This week we are on a trip to Nana's house. She ran around the house like a crazed firefly the day of leaving she was so excited. It is very endearing to have her love her family so much. She loves being on trips or occasions where the whole family is together. I also find that her mind comes alive when we are on trips, maybe there are so many new pathways being formed. At any rate it is good for her and fun for us, so its a win/win.

I had another realization today of just how autism robs its victims of their childhood. I see it so clearly as it is juxtaposed to Scarlet's little sister Skye's romp through childhood. Brynn, Scarlet, Skye and I were at the mall. In this particular mall there was a fenced in, padded play area. Brynn and Skye were at once drawn to it. Scarlet was almost immediately stressed. After a few minutes of helping her navigate the play area, she was frustrated and started tantruming and crying inconsolably. I never know at these times, what it is that is making her upset. Is it that mommy is following her everywhere making sure that she doesn't accidentally swing her arms inappropriately and knock down some unsuspecting play mate? Is it because she can't navigate the slide on her own? Is it because, more children came adding more noise and more visual stimulation? Is it because I wanted her to crawl through a tunnel and it is just plain scary in there? Is it all of the above? I wish for Scarlet that she could just do childhood things, but they scare her. It must be a lonely world she lives in.

Blue Bendy Straw Motif

I have always liked the word Motif. It has a certain romance and grandeur to it. When I say it I can feel the red velvet seat beneath me as I watch a tragic Opera. Oddly enough a blue bendy straw seemed to be my motif of the day. Nice color of blue, but completely devoid of romance. In fact it was twisted into the oddest shape. Fortunately what it lacked in romance it made up for in unique composition. It was in many ways a plastic metaphor of my existence.

Have you ever had something that just kept reappearing in odd places. Something you are certain that you have put away or thrown away but like a sprite it taunts you, popping up impishly out of nowhere. Enter a blue bendy straw motif.

I was in the space of deep thoughts when it occurred that most of life's lessons are blue bendy straws. They keep popping up in their same old odd shape. No mistaking, it is the same lesson just laying on a different floor. There is a verse found in Philippians 4 :12-13

"I know how to be brought low, and I know how to abound. In any and every circumstance, I have learned the secret of facing plenty and hunger, abundance and need. I can do all things through him who strengthens me."

This is my blue bendy straw. I find its familiar shape everywhere in my families autism experience. Oddly enough it is sometimes easier to be content when there is little to hope for. I find that when things are going well I want them to be better and loose the perspective that makes living with contentment a reality. For now things are going quite well with Scarlet. She is so much more easy going now that we are back on the diet. She is gaining ground with her IBI experience. She has mastered her matching program, she is a little whiz at matching. She is coming out with more and more words. She is starting to do things like, clap her hands for the song "If you are happy and you know it clap your hands". She has been giggling lots and trying to make us laugh. She loves to do those little hand clapping games that are popular with little girls her age... with lots of help of course. She is gaining ground on her voice output device and loves to find it and to ask for "TV". Her little sister knows this and brings her the voice output device when she wants to watch t.v. Things are moving in the right direction, but there is still a LONG way to go.

There is a familiar shade of blue lingering just on the corner of my perceptions and as I look in its direction, it is unmistakably that oddly shaped lackluster companion of mine. In this place of new growth with Scarlet, I look upwards with a smile, because even the most ordinary things can be beautiful. I can celebrate with each appropriately executed hand clap, because the God who gives me strength is my help and he is present and he is presently placing blue bendy straws in the most unlikely of places.

Specific Carbohydrate Diet revisited

Well, we are two weeks into our extreme diet experience. Specific Carbohydrate Diet revisited has come easier than I thought. We have followed this diet for a year and were already in a pretty good groove with it. I really, really miss rice. It was the only thing I had added, but apparently, it wasn't time. This time we are doing the Specific Carbohydrate Diet with a twist. It is actually called the GAPS diet. It is taken primarily from the SCD diet and is basically the same except for it's view on when milk products should be introduced. I have found the book Gut and Psychology Syndrome my Natasha Campbell-Mcbride(the neurologist who formulated the GAPS protocol) to be compelling and informative. I am so much better informed on why this diet even works in the first place. The SCD diet has worked wonders for Scarlet and after the initial die off symptoms (the bad bacteria dies as you neglect to feed it what it is hungry for ie. sugars and starches, this creates symptoms of fatigue, bad mood, headaches, etc. called die off.) she has become more calm and alert again.

This diet calls for a pretty strict regimen at the beginning when it is first implemented and we must start at square one. I have been trying to read the book in order to do it completely right this time around. I do not want to do this again...even though I am happy to have found it helpful. So, I have just taken the rice out of Scarlet's diet, but we will have to start with just bone broth and move up the latter of easily digestable foods. I'll keep you posted on our ascent.

As for really great things happening.... Scarlet signed the word "no" to me and then later in the week shook her head "no" while signing it to her therapist. This is a really big step. For her to have to power to say "yes" or "no" would up her communication quotient exponentially. Also, she has mastered her matching program in her IBI therapy. She is now matching alike objects with different people watching and in different rooms of the house. She is so proud of herself and we are so proud of her.

For family day today we were at grandma's and grandpa's house playing outside in the snow. The neighbor's golden retriever decided to come and play with us. Scarlet laughed and patted and followed the dog around. She was even shouting out the word "Daw" for dog. It is so exciting to see her even acknowledging animals. There have been times in the past, when she has blatantly ignored any type of animal and refused to look at it. Today she was engaged and fascinated. I love those words.

So here goes the SCD/GAPS experience in overdrive...lets hope we hear more of her voice every day.

Mall madness

It's been a while since I have been to the mall, but we had a free morning and the girls were feeling a little house bound. We decided that a trip to see the kitties at the pet store, might just be the thing we needed. Now, we three girls do venture out often to the grocery store where we are a tightly contained unit of Skye in the buggy and Scarlet always attached to my non-buggy-pushing hand. Despite having a rather wide girth, we usually maneuver without incident through the grocery store and to the check out. The mall is a little different. There is so much open space to run free in, and lets face it... there hasn't been much running free since winter zipped us up in its icy jacket (my exact imagery is a straight jacket, but out of respect for my Canadian friends I will defer from using such a term....can't help but think it though) So, today, Scarlet got to run free through the mall to her little hearts content and to public alarm.

It is often hard to balance letting an autistic kid be autistic and protecting the innocent bystanders from the unconventional sights and sounds of such freedom. Today, I let her be happy, unfettered...alarming. There were maybe only three other families in the entire mall, so I figure it didn't matter. However, when Scarlet came running, hands flapping high in the air above her, the mother and father of a the brown haired toddler ran frantically to their daughter who seemed precariously near this anomaly of a child. They kept rather close watch on Scarlet from that point on. I get it. I do. I have other children. I know a Scarlet's behavior is less than proper, but at least they could have shown some consideration to this little autistic girl's mother and removed their daughter to safety with less urgency.

On the flip side, I spent about 5 minute savoring the peels of laughter coming from Scarlet as we cuddled and played before bed time. It is a treasure of the richest kind to have her laugh appropriately at being tickled or during some one on one play. It is like finding an ancient Egyptian tomb and excavating King Tut's treasure. I only wish the "public" could see some normal moments like these, then maybe she would be less reprehensible.

Charlie's angel at ease

So it seems as I was practicing my karate kicks and sorting my file folders while doing deep breathing to ease the anxiety, God was working on his own lesson for me. It never ceases to amaze me how the Bible speaks to me. " For the word of God is alive and powerful. It is sharper than the sharpest two-edged sword, cutting between soul and spirit, between joint and marrow. It exposes our innermost thoughts and desires." Hebrews 4:12

Have you ever had those moments when you have read the Bible or heard a sermon when you know that you have been brought to hear these words at this particular time in your life. God is a master storyteller. It so intrigues me about Him. I love to read about His meandering around history while He builds all of life on earth into a master plot and then releases the future with a few colorful hints of how it will turn out. I love the true to life characters and the poignant pieces of wisdom tucked in and out of these stories like sequins on a dress. However, I often forget that He is in the business of building my story. It should not surprise me when He shows up like He does, like a father, like a spy, like an architect with precision and meaning. When I am open to his voice there are few moments that can be labeled as scrap metal...even when I forget to listen, He is forging ahead.

I am involved in a ladies Bible study on Esther. It has been an intriguing study and I can hardly put it down. Beth Moore speaks on the book every other week via video. This week was about waiting on the right time. The art of waiting has been lost to us Westerners. It is an unfortunate by-product of our culture. It was, in part, the reason for the somewhat frantic tone of my last blog. I had forgotten that God works things out in His way. I am only to wait for Him and look to Him, ready to act when the time is right. "They that wait upon the Lord shall renew their strength, they shall mount up with wings like eagles, they shall run and not be weary, they shall walk and not faint" Isaiah 40:31. The interesting point that Beth pointed out was that in this waiting, our focus is never what we are waiting for, it is who we are waiting on. The Master play write, the Supreme story teller, who never takes his cues out of sinc, or writes his lines out of order. If I am meant to wait, then it is for a reason and I am to do so while looking to him. The paradox in all of this is that while I am waiting I am not lying down. Look at all the action verbs accompanying this waiting, mounting up with eagles wings, running, walking. I am waiting, looking to God, while moving forward with confidence that when I "seek first the kingdom of God and His righteousness then all these things will be added unto you" Matthew 6:33

This is just another one of those crises of faith. Do I crumble underneath the load of all that I see, or do I trust that God can help and let Him lead me one step at a time. I don't have to have it all together (big exhaling breath) because He does. Maybe a little walking on the water could be fun....

flower child turned Charlie's angel

My momma and daddy made sure that I had a good self esteem. I have always felt that I could do anything I set my mind to if I persevered, gave it the ole' elbow grease, and a prayerful heart. I am not usually mixed up about my identity, but I've gotta tell you, autism is gonna have to bring the charlie's angel out of this flower child. I am just not sure where this particular angel's hiding place is. I have always loved the quote that "God is more concerned with your character than with your comfort. " I am not sure I feel the same affection for it as of late

Sometimes I feel like in order to be a good mommy to an autistic child, I must zip off my skin and become a changeling. Let me explain. I am by nature a free spirit, easy going, let's all get along kind of a gal. I would much rather write a song or a poem about my problems than confronting them head on. I hate conflict and details are too numerous and talk too loudly, they are like a constant buzzing that won't go away. I don't know why I have never been able to fit everything into nice little squares of organization all labeled and color coded. I do see the advantages of such things, but it leave so little room for the imagination and it makes my skin crawl to have everything so well defined....I mean where is the surprise in all that organization.

Not to knock it....it seems I am in need of a lesson or two in this department. It is a re-occurring theme in my life since autism has been sleeping on a plush little fairy bed at my house.

I have recently been reminded of my need to become something I am not for the good of my daughter. This assuming that everyone must have my best interest at heart is making a fool of me and getting my daughter nowhere fast. But honestly, do I have to be on top of every person working with my Scarlet just to ensure that they are moving in her best interest? As it is now, I need to hire a personal secretary just to keep up with the schedules involved. Let me just list, and I am probably getting some of these wrong because it has all changed since Scarlet has started school. First there is CASC who supervises the Occupational Therapist who sometimes makes an appearance at Scarlet's school and writes notes that I am sent in the mail and then responsible for getting to the Principal. She is with an organization called Closing the Gap. She is a wonderful lady who has ordered equipment for Scarlet's occupational therapy needs at school. This equipment has yet to arrive because I was unaware that all the documentation needed to get said equipment was not in place (rather had been lost). It is now my responsibility to hound the school and the organization until this equipment shows up.

Then there is the Children's Treatment Network who oversees the speech therapist who works out of the speak freely clinic. They are in charge of how far Scarlet can go in her augmentative communication world. I am supposed to be very familiar with their forms and checklist for augmentative communication devices (voice output device like Scarlet uses) so that at the time that Scarlet starts growing beyond their devices I can advocate for her to be sent on to a place called Bloorview who has higher tech options. I am supposed to frequently make my voice heard and be an integral part in all the goal setting and reaching in this area. This means that I need to learn a new computer program, get a password for their website, be very familiar with forms which they may or may not inform me of, and be a constant source of inspiration for my daughter who is learning to use these devices. There are meetings at the school with my speech therapist that I would like to be present for. I must work these into my schedule.

The school has frequent meetings about Scarlet's Individualized Education Plan, which I must also be involved with. I have to stay on top of the goals set and the implementation of these goals to assure that Scarlet is getting the most out of her school experience and not being underestimated. I must say, that Scarlet has a darling of a teacher who is quite eager and wonderful... thank you, Jesus.

Then there is the matter of getting and maintaining funding for IBI. Right now, people have so generously given to us and we have never been without. However, we have been on a wait list for at least three years with Kinark, a government organization that is responsible for eventually funding our IBI program. I am supposed to frequently call them and make sure that Scarlet is maintaining her spot on the wait list. They need to know that I am making some noise for my daughter so I don't get lost in the sea of other noisy parents. Scarlet is currently number 22 on the wait list. Last year in January she was number 42. This means another year before funding is available at which time I will have to advocate yet again to have the funding provided to the IBI therapists that have already worked wonders for my daughter, but are not part of the Kinark organization.

Did I mention that Scarlet is also without a permanent EA. Now I must frequently correspond with the school as they look for another suitable match for her. I have had to forgo potty training with her because any headway I was making at home was all reversed at school because she is not comfortable with strangers taking her to the washroom and it has been hard to have a consistent person taking care of her. In addition, Scarlet has been placed on a new restrictive diet because her last trip to the doctor showed that her gut was under disrepair again. This, while being a worthwhile venture, requires a huge learning curve and, yet again quite a bit of organization. Brynn and Skye... oh yes, I do have other children.

I am just tired throwing all this out into e space. I thought today as my stomach was feeling queasy that maybe I need to learn how to actually run at a problem head on, fists clenched while placing all the contingency plans into file folders that fit neatly into my super autism mom costume. Maybe I could reach in and find my inner Nancy Drew. It all sounds great, but I am already missing the flower child. I know that God is always forcing us out of our comfort zones, I think that I am definitely itching right now. I know it will be better for me if I can learn to be more organized. I know that learning how to push a little instead of taking no for an answer will be a good lesson too. I am just going to need a little supernatural strength. So for all you praying people out there.... say a little one for me tonight.

Thanks (all neatly sealed in a homemade card)

Angela

I want to check your blood

As frequent laughter has filled my house today, I find myself in a good place. I am so glad to have be able to get to know my daughter more each day. She is emerging like a flower in spring and I am discovering her to be sweet and funny and a little bit mischievous.

Every three months we take a trip to Markham to Scarlet's DAN doctor. He does a procedure called a "live cell" in which he takes a sample of Scarlet's blood and looks at it under a microscope to see what is going on is her body on a cellular level. It is nothing short of fascinating. I am able to see what he is seeing on a computer monitor, so I am able to witness the changes first hand. When Scarlet first had her blood looked at it was a mess... kind of like blood with garbage floating around. There were white blood cells that were jagged, not round at all, some were tear drop shaped, and there were unsightly things floating around clogging up her blood. There was actually something that looked like a broken chain floating around. I asked what that was and he told me it was the Strep virus. She had just recently had Strep and had a round of antibiotics for it , but there it was still in her bloodstream...fascinating. To make yet another long story short, after waging the war of diet and supplementation, and chelation, her blood looks next to normal now. Her blood cells are now circular, which is just what kind of body type a blood cell should have. There is little to no "garbage" floating around. There are just a few fuzzy little critters that show that some viral load is still an issue and some indication that her healed gut is now starting to become leaky again. This means that I am going to have to go back on a rather restrictive diet for at least three months until our next live cell to determine if the change in diet (I have recently added rice to Scarlet's diet) is precipitating the unfortunate changes. Her digestive system may not be ready for rice yet.

I am not overly excited about going down that crazy road, but it has worked wonders in the past, so here's hoping it will help again.

Another wonderful thing happened this week with Scarlet. She spontaneously signed and said "all done" at dinnertime. I have not been doing this sign with Scarlet at all and I was so shocked to hear her and see her using it appropriately. It is nothing short of miraculous to see her emerging from her place of silence and angst. She is becoming more confident and happy and is quite funny.

She is continuing to do well with her voice output device. Right now she has several pictures of things like a brush, a ball, a television, a toilet, a person drinking, a person eating, and music notes. When she pushes a picture a little girls voice says the name of the picture. We have been hearing Scarlet ask for t.v. a lot. She is learning to find her device and ask for what she wants. Ball and brush are close seconds for her to request. The therapists are quite happy with her progress and have high hopes for her in the future.

Days have been so much easier. I don't think that we had one tantrum today! I continually thank God from whom all blessings come. Instead of dreading the day, I am waking up wondering what new thing I will learn about my little girl! Thank you for your prayers, they are working!

Angela

As the snow falls lazily, flake after flake, 2010 is ushered in. It is hard to believe, as I look out of my window, that I have made it to this year and that I am not actually living in a super futuristic cloud city with a voice activated vacuum cleaner! 2010 use to seem so far away. It is amazing how time changes your perspective, kind of like snow covering over a familiar landscape. Our Christmas this year was one of the best we have had since Scarlet has been diagnosed. The contrast between this Christmas and the one we had two years ago is like the difference between my lilac bush from January to May.

Two years ago, Christmas was one of the worst days I have ever experienced with Scarlet. She was in a rage almost the entire day. It was too much for her. All of the new things that were assaulting her senses, all of the paper flying everywhere and the excitement in the air, too much for her...like a traveler in a blizzard. Paul and I began to re-adjust our expectations of celebrations such as Christmas and birthdays. They were no joyous occasion for Scarlet. Scarlet would not even look at her presents and would tantrum if asked to take part in gift opening. Whatever Scarlet's qualities, for better or worse, she would never be a material girl!

This Christmas there were no tantrums. Scarlet sat and took in the excitement around her. She acknowledged her gifts and even showed interest in some of them. She was part of our family enjoying a Christmas and this time she was inside a warm house looking at the soft white flakes and admiring them for their beauty. It was such a gift to have her dance excitedly when she saw the presents under the tree at her grandparent's house. It was almost unbelievable that she took in the whole, crazy day and seemed to enjoy it. This is not the same girl that we had even two Christmases ago. Maybe next Christmas we will actually find her playing with a toy!

What a pleasant surprise to be startled by a Christmas celebrated without angst.

I entitled this blog divinely startled because of the way God was always surprising me by His presence in this journey. I was again divinely startled this week. When Scarlet was first diagnosed and we were organizing a fundraising concert to get started with IBI therapy for Scarlet, we printed magnets with her picture on them and the phrase, "please pray for my healing." Many of you have that magnet on your fridge. We have that magnet on our fridge too. This week as I was cooking, Brynn was raiding the fridge and hangin' around the food. As he was re-adjusting some artwork on the fridge, the Scarlet magnet fell down hidden behind his picture. Brynn fished it out and played with it for a while. After a few moments of looking at the magnet, Brynn stated, "She never is going to be cured of autism is she, Mom?" As I was struggling to respond, Brynn finished, "That's ok, I like her just the way she is." He placed the magnet back on the fridge as I readjusted my mascara.

You know, when all this started for us, I thought it would be so great for God to show his power to Brynn by answering his prayers for her healing. I had it in my mind that this kind of display of God's power would be the kind of thing that would build faith and awe in Brynn. Now I see that God has done an equally amazing thing, one that I wasn't expecting. He has helped Brynn find contentment in a difficult circumstance...that is pretty awe inspiring. It is no piece of cake being a brother to an autistic sister. Just tonight he had his hair pulled out as he was hugging her because she was so excited but she couldn't respond appropriately.

Outside the snow is falling. Tonight they are calling for a storm, wind and several centimeters of snow. I am sure that we will experience the same forecast in our lives this year, but as I snuggle under my red down blanket I am reminded that no matter what the forecast, our family has a shelter. "The name of the Lord is a strong tower, the righteous run to it and are safe" Proverbs 18:10