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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