Thursday, February 21, 2013

Trying out the new book with dinner

In the video, I am pausing often. Anticipation is key according to the therapists. So even though we are doing it hand over hand, Sofie is initiating the follow through of the task. So in other words, when I say "chicken" Sofie pull her hand towards the image of the chicken. It's a lot of work for everyone involved but I think it is going somewhere.

Wednesday, February 20, 2013

Giant Rambling Nutshell or Ms. Bubu Goes to the Neurologist

This has been a really eventful week and it is only Wednesday! I am so exhausted mentally and physically. Tuesday we went to see THE Autism specialist in the area. Surprisingly, I wasn't really anxious about that visit. Honestly, I didn't expect much from the visit. The last visit with a specialist was a waste of time and left us unsatisfied and questioning if any doctor could give us some answers. Tuesday didn't answer all of our questions but the doctor spoke with authority and didn't pull any punches. She spoke in concrete terms and it made her positive observations carry so much more weight.

In a rambling nutshell, the doctor believes Sofie does have Autism. She is "on the spectrum." Given her young age it is unclear exactly where she fits on that very long band of color. The doctor believes that Sofie has pretty good cognitive skills. She says that sometimes with ASD there are questions about the child's intellect. After hearing tales of Sofie's mischief and adorable manipulative nature the doctor believes Sofie must be pretty smart. I asked why the doctor believes Sofie's ASD is "mild to moderate." She said with severe cases ASD kids avoid social interaction at all costs. She said those kids do not socialize. period. The doctor said the way I described Sofie's social interactions makes her think that it is the WAY Sofie socializes that is problematic and the fact that she can socialize (however bizarrely) is a good indicator that we are dealing with a manageable case of ASD. She didn't say "oh, go home! There is nothing to worry about" and this made me more optimistic than any other office visit Sofie has had-ever. From the time Sofie was approaching her first birthday I began to wonder about little quirks Sofie had and by the time she had her 15 month appointment those quirks were a huge concern for me. But I was told time and time again that all kids develop at different rates and that I should be patient. "Why does she grind her teeth?" "Some kids do that." "Is she supposed to play yet?" "Everyone is different." "She doesn't answer to her name. Should I be worried?" "Umm...???" "She has a really odd visual startle reflex, not auditory." "Everyone is different." "What should I do?" "Wait until she is two years old. Give her time. I know it's hard." The list could go on and on but I will stop-I don't want to relive that time.

I'm not mad at the medical professionals that tried to brush off Sofie's (now obvious) symptoms. I think their approach is characteristic of a much bigger problem. I think doctors are stuck in the past and are stuck on this very rigid view of what Autism "looks like." Society needs to catch up with this disorder! I wish I had a more eloquent way to say that-but it's crazy how little experts know about Autism. And THAT is why I was suspicious of Tuesday's appointment and I am so relieved my suspicions were unfounded.

What is so weird is that if I listened to my pediatrician, Tuesday would have been the day we all found out Sofie had Autism. Before that every doctor either said "too early to tell" or "my gut says she doesn't have it." Thank God for Early Intervention. They weren't going to wait for terrifying red flags to pop up. They simply looked at our daughter as the sum of her parts. All those severe delays and oddball quirks looked at as a whole cannot be ignored. I am so thankful that the compassionate individuals that assessed Sofie really looked at her.

Alright, enough looking back at Diagnosis day, back to the doctor's appointment...

I asked the doctor about some odd moments I have had with Sofie surrounding written words and letters. Sofie is in love with books. She has been obsessed with them for a long time. Prior to the diet change Sofie would look at them for REALLY long periods of time. Thankfully her attention span is closer to normal these days but she still loves books. She "reads" books by looking over all of the words and has actually picked out words on a few occasions. Once while I read "Brown Bear, Brown Bear.." I asked "Where is the Black Sheep?" And after protesting a bit, Sofie finally pointed to the sheep and then pointed to the words 'black sheep.' She did the same thing for the words 'white dog' too. It was crazy. I also saw her pick out the letter 'h' when a pbs show asked her to find the letter 'h' (after they had shown the audience the letter). Sofie is not even 22 months yet. There are other times Sofie has proven to have a really good visual memory and I asked the doctor about it.  

She said some of her patients have read before they spoke in sentences. She said kids on the spectrum tend to have amazing visual memories. The doctor said she has had two-year olds that can pick out DVDS by simply looking at the writing on the spine of the case. Like so many things about Sofie, it is hard to say with certainty what she is reading or not reading because of her young age but it would explain a lot. Sofie loves letters, there has to be a reason a child that isn't even two yet loves written words.

We left the neurologist with an appointment in 7 months and some guidelines for us to follow. The doctor said we should continue pushing proper socialization skills and giving Sofie opportunities to engage with the world around her. One way to do this is limiting TV. We already limit TV but are going to be a bit more rigid about the amount of TV Sofie watches. The doctor said to limit TV because her shows offer predictable one-sided mock socializing. In other words, we need to make Sofie work a bit.

Fueled by the great appointment I searched online for ways to better teach Sofie. In my search I found a lecture by Temple Grandin (I linked to the video in the previous blog entry). I knew very little about this woman and really only remembered the Autism Society Workshop using a quote from her to cap off the pessimistic workshop my mom and I went to. The quote was "different. not less than." I resented the quote because it was after 2+ hours of hearing how I should be prepared for Sofie to be less than my expectations. But after watching the video lecture I feel differently about that quote. This blog entry is already a novel, so I won't go into too much detail about it. Essentially she said take whatever an ASD kid is fixated on and use it to reach them. After watching that I felt I knew how to use my latest tool for Sofie. I had just made a 58 page picture book for Sofie. It was my alternative to the less-than-successful PEC cards. I'll talk about that in my next entry (it's a really involved, tiring process that could offer some really cool results-fingers crossed). Before the appointment and Grandin video I was tentative about fully committing to the book. Would it be too much? Would I frustrate her and make her pull away? Now I have this overwhelming feeling that she needs to be challenged. I know what her frustration sounds like and I know what her anger sounds like. I can work around anger and be cautious not to frustrate her. I can do this. It will be a ridiculous amount of work (again, you will laugh when you read how involved it is) but if Sofie is visual like the doctor said and possibly hyperlexic (word junkie of sorts), this might work.

I'm exhausted and excited for this new experiment Sofie, Ozzy and I are going to try. Let's see what the rest of this week holds. All I know is, so far so good. Okay, I will stop rambling-for now.

Stay tuned for Sofie's word book review!

Tuesday, February 19, 2013

Sleepy and Happy About "Tomorrow"

I meant to blog tonight but I am exhausted! Sofie had a big day. Neurologist appointment went great and speech therapy wasn't a disaster. I will call that a victory! BUT I do need to clear out my brain tomorrow night about Sofie's appointment and such, so stay tuned :) In the meantime, click on the link below. It's awesome and fills my head with a lot of positive thoughts.

For Anyone Who Loves An Independent Mind

Tuesday, February 12, 2013

Here and There

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.