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