I hear her sing now. Not just one song, she sings lots of songs. I have always sang to my girls as I am putting them to sleep. My special song to them is Moon Shadow by Cat Stevens. I hear Sophie sing this song to herself now. The other day she hopped on to my lap and said “Moon shadow Mommy”. I can’t describe how this feels.
I have always said that she would be healed, that the biomedical treatments were helping and that eventually she would recover, but inwardly, of course, I have had fears and doubts. No matter how much I have tried not to doubt, when day after day went by of her being in her own little world or days of her crying in pain, of course I was afraid of it never ending.
I had no idea it would take so long to heal her. It was Thanksgiving, 3 years ago that we began to realize something was wrong with our little girl. I remember a certain moment that seemed frozen in time where I watched her sit in the middle of the floor surrounded by her sisters and cousins and they were all playing and laughing while she sat with a few toys picking them up and putting them in a line over and over. Then her grandmother asked for a picture and I had to hold her up saying “look at grandma”, knowing she wouldn’t look at her but pretending that there was a chance. I don’t remember what excuse I used of why Sophie wouldn’t look.
I wonder where that picture is. It is strange to think that a picture actually exists of that moment , the very time my heart was being ripped apart. The ride home that night was quiet. My husband had seen it too. I shudder now to think of that time. It still seems like a nightmare. I never even let myself think of things so horrible and here it was happening, I was losing my child and being told she would never come back, she would never marry, she may never be potty trained, have friends or tell me she loves me. All of my dreams were being crushed. All I could do is cling to God and believe that he would not leave me in this pit, and He didn’t. He is faithful.
Sophie is healing right in front of my eyes. It is hard to put this into words. She has made so many improvements but explaining it to someone else is difficult, but I will try my best.
She is now “present” almost all the time. Sometimes she is still spacey. When I am doing treatments that make her yeast flare up or when I become lax in giving her supplements to keep yeast down she becomes spacey and goofy. She will run giggling at nothing or yell and cry and spin in circles. Most of the time she is not like this now. That is now the exception and not the norm. She still hum/moans a lot when she is concentrating. A person who does not know her would see that she has special needs right away.
She answers questions sometimes! I asked her “what is that?” about a toy she was holding and she said ” a girl” . She also told her grandfather that is was a unicorn that she was holding. She also asks for food, drink and when she wants to go somewhere. This is a complete break through!
Her eye contact is wonderful. she looks me in the eye all the time. It is so wonderful to be seen by her. She has relationships with people now. She plays with her sisters. She likes spending time with them and her grandparents. She plays with toys appropriately. At this very moment she is sitting next to me playing with a Dora backpack and she stopped and looked me right in the eyes and wrapped her arms around my neck and pulled me in close for a tight hug and said “my mommy”. Thank you God.
I attribute this to chelation. I see a huge difference when I am chelating and I see improvements after almost every session. Keeping the yeast in check with biotin and probiotics and sometimes GSE also makes a huge difference.
She is at the point now where I can start rehabilitating her. She is here not lost in her own little world. She has lost more than 3 years of the very formative part of her life. It is time for her to do the emotional, mental and social growing that happens between 2 1/2 to 6 years old. She has lost a lot but it seems selfish to grieve that when we have been given so much.
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Sophie’s Progress and Autism testing
Date: Thursday October 29, 2009Posted in: Chelation, GF/CF Diet, Personal Stories, Recovery Stories, Supplements, Testing and Test Results
Sophie has been improving but it is hard to measure the change. I use an online test to help me gain perspective, (links below). It is scored 1-100, 100 being more severely effected. Sophie’s score was 67. She had scored 74 in June 2008. The test is divided into sections:
Speech/Language/Communication,
Sociability
Sensory/Cognitive Awareness
Health/Physical/Behavior
Sophie made gains in all areas except for health where there was a bit of decline, mainly because she is now some what destructive, biting objects when frustrated. Also the constant constipation issues brought down her score in that area.
I want to share her improvements. Sophie seems much more present. She isn’t off in her own world anymore. She will look at us, almost always, when we say her name or ask her to look at us. Her singing is back! I hear her precious little voice singing again. She is also counting again and she is back up to 20 where she was when autism took her away from us. She plays with her sisters a lot, granted, she doesn’t share and she controls the game, her sisters adore her and don’t mind a bit. She has relationships with people. We have moved into our parents house and she spends time with different members of the family.
I attribute the improvements to chelation. I am using ALA and DMSA, 100mg, 3 times a day 3 days a week. I also have her on probiotics, tmg, folonic acid, mb12, biotin, vitamin c and miralax daily. I use GSE and Milk thistle when chelating, the GSE for yeast control and the milk thistle to support her liver. You can find most of these things here http://astore.amazon.com/autishar-20
Lately I have felt so unsatisfied. Nothing has changed. My life is the same as always. I am still patiently waiting for Sophie’s recovery, putting bandaids on symptoms again and again and again. The bills are still late. The house still needs cleaning. The kids keep out growing their clothes, threatening me with becoming teenagers. Sophie still isn’t potty trained. I still am not homeschooling the way I would like to. I didn’t spend the time with my girls that I wanted to, or if I did then I neglected something else. Nothing has changed.
I feel like I am always chasing something just out of my reach. How many times have I saved money or waited through adjustment periods to add the one new supplement, hoping that it would have the effect it had on some other child and she will wake up and be cured? One after another they fall, like the clean dishes I spend the end of my day forcing myself to wash.
Yes, I am being gloomy again, but more than that, I am pondering. How much am I missing? Sophie is 5 right now and as much as I want her to be the 5 I dreamed of for her, that isn’t what I have. As much as I want to be that perfect mom with a perfect home and a perfect marriage that isn’t what I have either, but what I have is pretty good.
It is so easy to be lazy in my thoughts. It is easy to let life’s burdens make me feel tired and worn down. It steals the joy of my triumphs way too soon. This is the biggest battle I am fighting, to keep my mind disciplined, to counter the thoughts of hopelessness and to see the grasping for wind as what it is.
How much of the beauty of every day will I miss? How much of my little girl’s childhood is fading as I chase after the childhood I want for her?
Right now she is here and she is 5. She loves to snuggle and hates puppets. She screams and giggles when the wind hits her on breezy days and she thinks the word “oops” is hysterically funny. She is my precious Sophie.
Lord, help me to see the divine in the every day, help me to find the treasure that you have hidden for me in every part of my life, don’t let me miss any sacred thing.
More then a month since I wrote my first weepy, whiny post about my little girl’s loose tooth, it finally came out. I started to give my Sophie her nightly supplements and when she opened her mouth I saw her tooth was gone.
I knew it would be soon when I saw the tooth earlier that day. I even thought about pulling it out just a few hours before she lost it, I knew it was just dangling by a thread. It had taken so long to come out I almost felt like it was holding on for me and for her, waiting for her to have more clarity so that it wouldn’t be a empty meaningless event, but there it was a hole where her baby tooth use to be.
We searched the house, I was sure she hadn’t lost it before the sandwich she had just eaten. We are pretty sure it was swallowed. She seem oblivious to it all.
I felt empty and just worn out. The war to remain positive and to have faith that God will guide my hands to heal my child is a tough one and I have lost another battle. Autism has stolen her first tooth and everything that goes with that.
I determined to not let this be a crushing blow. I feel the pain of greif, but I will only allow this to be a ripple in my soul, not a wave that will over take me. I have determined that everything this enemy takes from us they will pay back with joy when she is healed.
I am planning a party. When she is healed we are throwing the biggest party we have ever had. All the relatives that she should have known are required to be there. All the presents and games she should have enjoyed, she will enjoy. She will meet friends. We may even take a week or 2 off work to travel and show her all of the things she should have seen in the world already. This will be a celebration equal to all of the celebrations this has taken from us and then some. Put that in your pipe and smoke it stupid autism!
I believe that my child will be healed by next Christmas. Yes this is an extremely bold statement and I am gathering up all the moxie and determination I have to put that in writing. It seems logical to me. By this time she will have about 30 more rounds of chelation under her belt. I believe that should be enough to remove the mercury and her mind will be clear. I am not saying that she will be just like every other child by this time, it is more like an accident victim who comes out of a coma. I believe she will have woken up. She will still have some recovery and rehabilitation to go through.
So I have given you something to watch, something tangible. Succeed or fail.
Related post http://wakingsophie.com/passing-milestones
Tuesday night the snow started coming down, around 6-8 inches expected. We all had cabin fever. With my husband laid off and just getting through the holidays, we haven’t made many trips out for fun lately. My husband came up with the brilliant idea to go to Chucky Cheese’s. Even though it was a school night and my oldest now attends public school, I couldn’t resist.We invited our brother and sister in law and their little boy and off we went.
The snow was already coming down and the roads were covered. While I clung to the dashboard, my husband and kids had a great time with the car sliding around the roads. When we got to the restaurant, the place was empty, maybe 3 other people besides the employees. It was heaven. Sophie was able to climb around without the fear of being knocked over by herds of stampeding children. It was so quiet that she wasn’t freaking out because of all of the loud sounds like usual. No one was looking at us trying to figure her out. It was a stress free night!
Sophie spent the first 20 minutes or so laying on her favorite “slide”, I got to play skee ball on the “slide” next to her. 
Then we just walked around from game to game exploring. She has always liked to sit in the cars, but her dad got her to ride the horse. She fell in love and rode it over and over, even petting it. One of her sisters dragged her into the tube, she also dragged her all around the tube until they finally found the slide to get down. It wasn’t one of Sophie’s favorites, but I had always wanted to see her up there.
We made it home after more donuts parking lot and sliding all over. We got 14 inches of snow that night and now the kids all have colds. We wont be leaving the house for a while.
I am so glad for that especially fun night out. I only wish I had brought a camera.
Looking at past posts, especially the last one I wrote, I think maybe I am neglecting to write about how wonderful it is to be Sophie’s mom on a daily basis. Yes there is sorrow when I see milestones passing or when I see her in pain, but day in, day out, she is a joy.
If you are reading this and you have a special needs child, these are things you already know, but for the rest of the world, special doesn’t begin to describe my child.
The love that my child inspires is remarkable. She is delicate and vunerable and there is a purity to her that I have only seen in a new born. It is truly like have babyhood extended way beyond it’s time. The only thing that doesn’t match is her growing body.
Not many people take the time to know her. She isn’t loud and definitely doesn’t demand attention. Yes sometimes she yells or screams in restaurants or grocery stores, but that is her sickness that always screams for attention. The quiet little girl inside is only coaxed out in peaceful times. She sneaks out when her sickness is sleeping. She is only visible if you really look for her. She is a hidden treasure, and like most hidden treasures when you finally get a glimpse of her she is more beautiful then you could have ever imagined.
She has stretched me into a better person. She expanded my heart to hold this massive love she inspires.
My patience has stretched while I learn to care for her and wait for God’s healing.
My empathy has stretch as I meet the eyes of the other parents I see walking down the isles of grocery stores with their hidden treasures, it is amazing how I never really saw them before.
She has stretched my self discipline as I continue wake in the night to calms her cries or give her medicine, as I still change diapers at 5 years old, as I spend hours trying just to figure out what is wrong or what she wants.
She has stretched my vision of what a mom can be as I strive to mimic new role models, mothers who don’t worry do much about there housework or teaching their kids to read at 3 or 4, but who struggle through a marathon fight and never give up hope.
I am blessed by the sweetness of God’s gift of Sophie every day, and I feel honored that God entrusted her to me.
I feel the now familiar weight in my chest, more grieving. This has been lingering and growing for a while and now it has arrived in it’s fullness. A silly little milestone is close to passing and I have to accept that it will be meaningless to my sweet little girl.
She has a loose tooth.
I feel foolish that tears are now running down my cheeks as I type about such a small thing in the scope of a lifetime. It is just a little tooth, but to me it is one more loss. One more thing that I have to accept and choke down. The reality that it will pass by as less important than it is to most kids.
She goes through so much everyday, if any child deserves this little bit of childhood magic it is her.
Will she even see it? Will we just notice one day that it is gone and find it on the floor, dropped with little thought?
We will put on the now routine show of putting it under her pillow like we have for all of our other kids. We will sneak in and replace it while she sleeps looking like an angel, and we will wake her up in the morning and show her something meaningless to her, knowing she probably doesn’t understand.
I know how much we have to be grateful for. She is beautiful and sweet. It is like she is prolonging her babyhood and I get all of the benefits and trials that brings. She will still cuddle with me for hours. She isn’t busy playing with friends. But there is also saddness in the fact that she will cuddle with me for hours and she isn’t busy playing with friends.
I must cling to the thought that she will one day be healed and this will be a less painful memory. I have to get back to the fight that many believe is impossible. I will remember all of the mothers around the world that are fighting with me and the bond that we share. She might not have remembered her first lost tooth anyway, right?
Related Post- http://wakingsophie.com/it-finally-happened-the-tooth-came-out
I hear crazy laughter ringing through the darkness. It is in the bed next to me. It is the middle of the night and I haven’t been able to sleep, it is so loud and the bed keeps shaking. Something is bouncing on the bed right next to me. I shiver thinking about the blows to my face, the times when I have felt a hard skull smash against my nose or mouth in the darkness, and I am left with a fat lip or blood around the edges of my nose. And then something unexpected happens, I feel sharp teeth clenched down on the skin on my arm, ripping at my flesh.
No I am not having a nightmare or writing a horror novel. Sophie is having yeast issues and getting a molar in. Sometimes I can’t believe that this is my life.
Sometimes I freeze, just momentarily. I get trapped by hopelessness and I am paralyzed. My breathe falls from my chest and I can’t seem to suck in any air. What if she never gets better? What if what I have been doing with her isn’t helping at all and we are trapped in this pit.
I have no choice but to stop to encourage myself. Light always overcomes the darkness. Even the tiny flame from a single match will chase away the darkness leaving only shadows remaining.
My daughter is still here. Her mind is full and wonderful. I will build a bridge from her mind to the world and she will walk over it someday.
When we were discovering that Sophie had autism, my world crashing down around me, I finally reached out for help and prayer. I could not handle this alone and I was sinking into a deep abyss of unimaginable sorrow.
Anyone who has a child with autism knows this place all too well. The torment. The thoughts of all of your dreams for the future of your child broken and unattainable. The wedding day, the grand kids, graduation replaced by thoughts of changing adult diapers , looks of pity from strangers and the movie Rain Man.
It was when I finally reached out for help and posted a message on a forum that I frequent for prayer request that is when I received the story Welcome to Holland. If you have a child with special needs, you have undoubtedly been forwarded this story at one time or another. The gist of the story is that you are going on the trip of your dreams to Italy. You have bought guide books, planned, dreamed and prepared for this trip. There is a problem with the flight plan and you end up in Holland. Holland isn’t a horrible place, and you will always grieve your dream trip, but it has nice things about it too.
This was a turning point for me. When I read this story I thought to myself, I would never stay in Holland! There is more than one way to get to Italy. Boat, plane, hijack a bus but I would not just give up on my dream because of some misfortune, because someone tells me I can’t. I would fight my way to Italy and then enjoy it all the more because I would also have another triumph under my belt.
I am amazed at what people will except just because someone says “this is the way it is and you can’t change it”. Well they don’t know me and they don’t know my God. I have faced many challenges in my life and God has always brought me through them.
Another person, from the same forum I mentioned earlier sent me this:
Jeremiah 29:11 (New International Version)
11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
Now that is something I can sink my teeth into.
Don’t give up, cling to hope. Set your chin like flint and do not be moved.