Thursday, October 28, 2010


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

Friday, October 22, 2010

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.

Monday, September 27, 2010

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".

Wednesday, August 25, 2010

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.

Monday, August 23, 2010

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.

Thursday, August 12, 2010

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...

Sunday, August 1, 2010

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)