It has been too long since my last entry. Maybe in some ways that is a good thing. The reason it has been so long is because other areas of life were occupying my time-things not related to Sofie's diagnosis or even Sofie. "Live. Love. Repeat." This is a marathon and I think it's really healthy to spend some time spinning the other plates in my life. Not to mention thinking about Sofie's therapy techniques 24/7 is exhausting. I can't live and breath it every second of every day. You stop seeing your child if you do that.
Seeing Sofie is VERY important to me and Ozzy (and all who love her). I am still confused or conflicted over the competing schools of thought regarding "labeling" and "testifying." I think I am coming to a solid footing on the topic. I understand where some are coming from when they say "don't tell everyone about her diagnosis. that is all they will see." But at this stage in Sofie's life I don't know if that thinking makes it more about me and less about her. I want to be able to tell Sofie about this time in her life with great pride in her- and us. I never want to have to explain to her that I kept any part of her a secret. I don't think that means me introducing her as "my daughter with Autism." But I will proudly testify how amazing my child is and how hard she works to attach herself to this world. I think of it like if Sofie got an amazing grade on a chemistry exam and someone said to me "wow! Sofie is so bright! That girl can do anything!" Keeping it to myself that she studied hard for a whole week and struggled with balancing equations doesn't make the victory any sweeter. I'm going to share with great pride that my daughter works hard and, yes, can do anything.
Now when Sofie is older the story will change a bit (as it always does). Autism is one part of her identity. And in the same way we all process identity, Sofie will decide how much she wants to share with people. I hope and pray that it is something she can choose to share and not something that is an obvious barrier between her and socializing with people. I really believe in my heart it will be the former. How can you go on this journey and think anything else?
I don't think I am blissfully naive either. Sofie's speech therapist thinks that she has made a lot of progress in a short period of time. The new obstacle in focus is imitation. If we can get Sofie to consistently imitate us then it will open up the door to Sofie catching on quicker with expressive language. I say "quicker" because Sofie is babbling a lot these days and little words are coming out. It's VERY exciting and gives Ozzy and me so much joy. Sofie says "yeah" for an affirmative response and even said "yeahbaybay" for an emphatic affirmative. She also repeats the word "ready" in 'ready, set, go.' And in an awesome moment, Sofie ran over to Ozzy when he came home the other night and said "hey daddy" with a big smile and a lot of eye contact. :) :):)
We have a neurologist appointment next week. I am not holding my breath or scared of what they will say. I have lost a bit of faith in what doctors say. I trust the therapists' opinions more because they actually know my daughter. Sofie doesn't fit any stereotype of Autism and part of me is expecting to hear "your child doesn't have autism" or "oh boy, prepare yourself for surprise scary hypothetical that I can't back-up but I will say anyway." You would think I would be praying for the former but there is no biological test to prove that Sofie doesn't have Autism. The only way to say Sofie isn't on the spectrum is for Sofie's language and socialization to improve. Doctors obsessing over this idea of "does she or doesn't she have autism?" is really doctors focusing on a label. Do they really think it is the label that keeps me up some nights? No, its the symptoms. The last neurologist we saw was happy to say Sofie 'didn't have autism and it was too early to diagnosis' but had no concrete reason Sofie was so delayed in some areas. I honestly don't care about this label. Maybe that is why I am so comfortable saying it these days. It's a name scientists gave a list of symptoms. It is not a tactile thing or person. And the more times you say the more trivial the word feels coming out of your mouth. I am lucky. Other words don't have the same powerlessness when you say them over and over. And my heart goes out to all those who are confronted with THOSE words.
I am not saying I am not scared of the future. I am just getting better about not thinking of it too much. I try to remind myself that if Sofie was a typically developing child I would be psychotic to worry how she would adjust in high school, so why bother? We will get there. Time moves fast enough on its own without me imagining scenarios of Sofie's schooling and teen social life. Pre-school and nursery school scare me sometimes but again I have to keep my thoughts here. And "here" is not a bad place to be these days-plus "here" keeps me very busy with therapy appointments and therapy homework for mommy and daddy. It reminds me of a childhood song on one of my favorite shows, "Fraggle Rock." A character sings that you can never be 'there' you are always 'here.' The character is singing it in a sad tone because he feels stuck but today, for me, that is a comforting song.
Showing posts with label daddy to the rescue. Show all posts
Showing posts with label daddy to the rescue. Show all posts
Tuesday, February 12, 2013
Sunday, January 13, 2013
The Adventures of Bubu the Window Licker
Sofie is keeping us running around 12+ hours a day, so we thought we would return the favor and let her run off some energy at the gym. On Saturday we took her to the Little Gym for a class. We had so much fun. She did great. She handled it so much better than our last attempt in November. She seemed more comfortable in her skin. I really think the diet is helping calm her a bit. What is funny is that calming Sofie means helping her run MORE and yell MORE. There was so much congestion in that brilliant brain; I think the diet and therapy techniques are helping clear the fog more and more-every day. Ozzy and I were so happy to see Sofie running around the gym squealing. There were so many kids and Sofie didn't check out. She stayed in the moment. The first 20 minutes of class she was very present and seemed to be loving every second of it. And after the first 20 minutes, those shiny windows were calling to our little mischievous Bubu.
We could tell the chaos of a dozen children running around was getting to her. She was munching and sucking on her fingers, pulling on her ears, and licking the windows. These things she does are so intimate. The cute little blond girl having a tantrum next to us was getting way more attention than our sweet little window licker. Sofie's unique ways of coping are executed with a coolness that her parents certainly never came close to having. I hope she does these things in such a cool manner because she is so comfortable with herself. I never want to think she does it in such a quiet manner because she is trying to hide it. I really believe that little girl KNOWS who she is. She will have such a unique voice- she already does without saying a word. At the end of class, the teacher blew dozens of bubbles and all the other kids were waving their arms in excitement trying to pop as many as their little arms could. And in the middle of that storm of cute little arms was Sofie quietly walking with a smile on her face intently looking at all the bubbles and selecting bubbles one at a time to pop. How did we get so lucky to have such a sweet girl?
On the topic of sweetness, I need to share a story from gym class. Sofie was trying to lick one of the windows AGAIN and Ozzy gently picked her up and said "I know Sweetie, those windows are nice and cold but they aren't ours-so we can't lick them." He said it so naturally. It was the highlight of my weekend. We are doing great and as long as we remember to "live, love and repeat" we are going to grow stronger each day (even on the crappy days).
Love to all of our family and friends, we are the luckiest family in the world.
We could tell the chaos of a dozen children running around was getting to her. She was munching and sucking on her fingers, pulling on her ears, and licking the windows. These things she does are so intimate. The cute little blond girl having a tantrum next to us was getting way more attention than our sweet little window licker. Sofie's unique ways of coping are executed with a coolness that her parents certainly never came close to having. I hope she does these things in such a cool manner because she is so comfortable with herself. I never want to think she does it in such a quiet manner because she is trying to hide it. I really believe that little girl KNOWS who she is. She will have such a unique voice- she already does without saying a word. At the end of class, the teacher blew dozens of bubbles and all the other kids were waving their arms in excitement trying to pop as many as their little arms could. And in the middle of that storm of cute little arms was Sofie quietly walking with a smile on her face intently looking at all the bubbles and selecting bubbles one at a time to pop. How did we get so lucky to have such a sweet girl?
On the topic of sweetness, I need to share a story from gym class. Sofie was trying to lick one of the windows AGAIN and Ozzy gently picked her up and said "I know Sweetie, those windows are nice and cold but they aren't ours-so we can't lick them." He said it so naturally. It was the highlight of my weekend. We are doing great and as long as we remember to "live, love and repeat" we are going to grow stronger each day (even on the crappy days).
Love to all of our family and friends, we are the luckiest family in the world.
Monday, December 10, 2012
Bubu Babbles!
Tonight our little Bubu did some great babbling after her bath. She is making some great sounds. We feel like she is SO close to saying a word. So close! I want to squeeze the words out of her. I know they are in there!
Tuesday, November 6, 2012
The Monkey on Our Bubu's Back: Bizarre Possibilities
So the past two days our little sweet girl has been a bit cranky. For all of her unique quirks with her funny personality, crankiness is generally not one of them. Frustration? Sure. Occasional anger? You bet. But she isn't usually cranky. It was a bit disheartening because she seemed to be adjusting to the new diet so well at first (even though it is still a few days old). I was doing my nightly homework last night and discovered something REALLY interesting. The biggest motivation for parents to put their kids on the Glucose-Free Milk-Free is that there is a lot of research that suggests those two things are making it hard for kids with autism to think clearly. That idea seems to be agreed on by a lot of people, it is the "why" that everyone has a different idea on. Ozzy and I thought one of the theories might not be so crazy. It is the theory that our Bubu is disposing of metabolic waste inefficiently. I picture this crazy analogy in my head:
When you are doing a really good job cleaning up the house, you are on a roll and you are putting everything in its right spot. And then you hit a snag, you either didn't realize that you had SOOO much junk or you are just tired and really have no interest in cleaning anymore, or maybe both. So you start just shoving papers wherever, the floor you meant to mop you opt to only sweep. And at the end of the day, the house is a bit cleaner but your tired choices created a bit of mess on its own.
That is the idea behind the opiate theory regarding gluten and casein (dairy) for children with Autism. Our Bubu is POSSIBLY taking in gluten and casein and instead of taking out the beneficial nutrients and having the waste pass through her, she is doing something truly unique. Her unique body is possibly "leaking" a bit of the gluten and casein out of her intestine and it travels through her blood stream and up to her brain where her brain is incredibly confused to have these unwelcomed visitors. The brain's reaction to these visitors may be inflammation or cloudiness that gets in the way of her brain communicating to different sections. Sometimes our Bubu is slow to pick up on something (especially in the afternoon), I picture the messages in her brain travelling in little slow-moving cautious cars in a dense fog. If this is the case, the diet will get rid of the fog.
The other theory is also very interesting. Some scientists believe that kids like Bubu are breaking down the gluten and casein into something completely different. They think that kids with autism are creating opiate compounds with the waste (that travel to the brain) and since they aren't getting rid of the junk like they are supposed to, the opiates stay and create a drugged-like state in some children. If this was true it would explain why kids with autism have such high pain tolerances (they are adorable pain killer-making machines) and it would explain the disorientation and confusion they often show. In short, bread and milk are making them high.
There appears to be some people that think both of these theories have some valid points. In regards to our little Bubu, I think it is a little bit of both theories. Bubu's foggiest time of day is in the afternoon after she has consumed two bottles in about five or six hours time. It would explain why when she first wakes up she is very alert and engaged (longest time without a bottle).
So how does this relate to the crankiness and regression? Well, if the theories are right, Bubu is in withdrawal from the opiates. The milk and breads helped her feel really great, incredibly confused but great. And she isn't exactly too concerned about lucidity, she is a baby. She wants to keep making those opiates (again, in theory). So the literature I read said that Bubu can experience withdrawal symptoms for about a week. Hopefully, after that it will be onwards and upwards. The book warns that Bubu has been making a lot of junk and that is going to take some time to clear out. So we are all going to have to be patient with her progress. That is going to be really tough some days. The book recommends that we do this diet for AT LEAST six months, even if we don't see much progress in those six months. Ozzy and I feel like she is already making little positive strides forward so we can't imagine taking her off the diet. I won't lie though, the diet is a bit overwhelming for us. Ozzy is awesome at reminding me that we don't have to fix everything in a day. Bubu is going to need some time. And thank God, at 18 months of age I think she has some time to figure out this stuff.
And I really feel it will be Ozzy, Bubu and me figuring out this stuff. There is a lot of information out there but not many concrete answers. It's okay, I have an amazing team to help me find the answers. Today may not be the most encouraging day but it is not even close to a really bad day.
When you are doing a really good job cleaning up the house, you are on a roll and you are putting everything in its right spot. And then you hit a snag, you either didn't realize that you had SOOO much junk or you are just tired and really have no interest in cleaning anymore, or maybe both. So you start just shoving papers wherever, the floor you meant to mop you opt to only sweep. And at the end of the day, the house is a bit cleaner but your tired choices created a bit of mess on its own.
That is the idea behind the opiate theory regarding gluten and casein (dairy) for children with Autism. Our Bubu is POSSIBLY taking in gluten and casein and instead of taking out the beneficial nutrients and having the waste pass through her, she is doing something truly unique. Her unique body is possibly "leaking" a bit of the gluten and casein out of her intestine and it travels through her blood stream and up to her brain where her brain is incredibly confused to have these unwelcomed visitors. The brain's reaction to these visitors may be inflammation or cloudiness that gets in the way of her brain communicating to different sections. Sometimes our Bubu is slow to pick up on something (especially in the afternoon), I picture the messages in her brain travelling in little slow-moving cautious cars in a dense fog. If this is the case, the diet will get rid of the fog.
The other theory is also very interesting. Some scientists believe that kids like Bubu are breaking down the gluten and casein into something completely different. They think that kids with autism are creating opiate compounds with the waste (that travel to the brain) and since they aren't getting rid of the junk like they are supposed to, the opiates stay and create a drugged-like state in some children. If this was true it would explain why kids with autism have such high pain tolerances (they are adorable pain killer-making machines) and it would explain the disorientation and confusion they often show. In short, bread and milk are making them high.
There appears to be some people that think both of these theories have some valid points. In regards to our little Bubu, I think it is a little bit of both theories. Bubu's foggiest time of day is in the afternoon after she has consumed two bottles in about five or six hours time. It would explain why when she first wakes up she is very alert and engaged (longest time without a bottle).
So how does this relate to the crankiness and regression? Well, if the theories are right, Bubu is in withdrawal from the opiates. The milk and breads helped her feel really great, incredibly confused but great. And she isn't exactly too concerned about lucidity, she is a baby. She wants to keep making those opiates (again, in theory). So the literature I read said that Bubu can experience withdrawal symptoms for about a week. Hopefully, after that it will be onwards and upwards. The book warns that Bubu has been making a lot of junk and that is going to take some time to clear out. So we are all going to have to be patient with her progress. That is going to be really tough some days. The book recommends that we do this diet for AT LEAST six months, even if we don't see much progress in those six months. Ozzy and I feel like she is already making little positive strides forward so we can't imagine taking her off the diet. I won't lie though, the diet is a bit overwhelming for us. Ozzy is awesome at reminding me that we don't have to fix everything in a day. Bubu is going to need some time. And thank God, at 18 months of age I think she has some time to figure out this stuff.
And I really feel it will be Ozzy, Bubu and me figuring out this stuff. There is a lot of information out there but not many concrete answers. It's okay, I have an amazing team to help me find the answers. Today may not be the most encouraging day but it is not even close to a really bad day.
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