Friday, April 10, 2009

"Is she coming back?"

The Autism conference started for me on Thursday. I dropped Sophie off at Stephanie's mid-morning and made my way to Columbia. Sophie seemed a little uneasy at first and said she wanted to come with me. I explained to her for a little while what the rest of the day was going to be like and what was going to happen and that she would be staying there with Stephanie. I guess I went on a little too long because Sophie started pushing me towards the door and said, "Go, Mom." I think she had a great time with Stephanie and I'm so grateful to her for watching Sophie so I could go! I'm also grateful for Bobby for taking such great care of the girls while I was gone, remembering to pack lunches, wash hair, do laundry, administer antibiotics... (We had strep here and it took our family for quite a ride the past few weeks.) Bobby said the girls did really well while I was gone and didn't complain at all. Saturday morning Franny woke up and said, "Is Mom here?" Bobby told her no and she said, "Is she coming back?" I thought that was so cute.

Speaking of Saturday morning, I had the opportunity to hear Dr. Rebecca Landa speak. She was the key-note speaker that morning and she talked about early detection of Autism. She said that the complexities of early detection of Autism doesn't allow for easy answers. It's not as simple as, "if your kid is 14 months and he's not doing this, then he must be autistic." She did however offer some really helpful information in how to find a diagnosis as early as 14 months. That's huge. I mean, most people know that there's a window of time in early development (ages 2-5?) where you can make a lot of progress with our kids. After that, sure there can still be progress, but you won't get as far as you would have if the kid had started intervention at 3 or even 2 years old. Maybe even sooner now in light of Dr. Landa's research. What I'm not sure that most people know, is that most children who receive intensive intervention can make great strides with their development. Some may never completely catch up, but if intervention can be started as early as let's say 18 months, they have a much better chance of catching up then if they started a year later.

Here are two videos where Dr. Landa's research was featured:

Kennedy Krieger's Autism Research featured on ABC World News Tonight
Kennedy Krieger's Autism Programs featured in FOX 45 "Cover Story"

My notes aren't great, but I'm sure some of you are reading this and wanting to know what these early signs might be. I'm going to give a really simple description of the study, for fear that I'll remember some detail of it wrong. She started with a large group of babies and visited them at six months. I believe half of them had siblings with Autism. They took data and made observations about the children at six months. They watched them play with toys, play peek-a-boo with mommy, etc. She (or a member of her team) then met with each child again at 14 months, 24 months, and 36 months. Thirty-six months is kind of the gold standard. By that time you pretty much know if the kid has an ASD (Autism Spectrum Disorder).

They were then able to go back and evaluate the data they had collected for the children who ended up later being diagnosed. At six months one of the distinguishing factors was head lag. When your baby is laying on his back and you hold him by the hands and pull him up to sitting position, if his head doesn't come up in line with his body, and if it stays on the ground and bends back as you pull up, that is head lag. She said that the social domain of children she observed at six months who were later diagnosed with ASD appeared rather intact, but what they did observe was the following:

  • high degree of passivity
  • some delay in milestones (babbling, motor skills)
  • poor postural control, atypical movements (these would differ from child to child, but might include odd gestures or body movements. This would include head lag. When Franny was six months she used to like to kick only her right leg in the bathtub. It was incredibly cute. I'm not saying that was a sign, but it could have been. She also used to rotate her arm while she nursed and kind of stroke my shoulder every time it came around. That was really cute, too.)
  • In a challenge task, the differences were more pronounced. She described their behavior as "sticky." I think what she meant by that was an unwillingness to divert their attention away from some fixation. For example she showed us a clip with some children who were a couple feet away from a toy that could light up and play music. The kids had strings attached to them so that anytime they moved it would manipulate the toy. Dr. Landa showed us some videos and the kids who were neurotypical had joint attention- looking at the toy, then the adult in the room, then back at the toy, looking to share the experience with that adult. The child with the ASD however, found the strap that attached the string to her leg and became fixated on that, not at all interested in the toy or the adult in the room.
The fourteen month predictors she gave were the following:
  • social frequency of ... (oops. Whatever it was I missed this. It had to have something to do with joint attention.)
  • diversity of consonants
  • stereotyped pattern of interests and behaviors
It might be better to mention what they are looking for at fourteen months, and the absence of which might be an indicator that there is a problem:
  • initation of behavior regulatory acts
  • diversity of gestures/consonants
  • frequency of triadic gaze
  • initiation of joint attention
Sadly, the likelihood of finding services for a child at such a young age isn't great. It's hard enough in some areas to find services for your 2 1/2 year old or 3 year old. (So I'm told, we've been incredibly blessed and I'd hate for anyone to get the idea that I'm describing my own experience here.) I didn't go to Dr. Landa's sessions describing what treatment would look like in these early stages- I wish I had- but I did write something down about it focusing on interpersonal synchrony, diversity, and active engagement with the world. From that I took that as much as your baby wants to turn a car over and spin the wheels and watch them spin, you just can't let that happen. Remove all the toy cars from your house for a while and give him access to other toys. He won't like it at first but he'll adjust. He'll need to be taught exactly how to play with toys. Reward him for giving you his eye contact and every time he wants to share an activity or experience with you. Make sure the reward is something really motivating for him. One of the most interesting rewards I ever heard of was from my sister-in-law Niki who worked with a little boy who had Autism. He loved to hear the sound of the vaccuum. So if he completed a task she'd turn it on for him and he'd squeal with delight. A friend of mine had inspiration to let a boy she was working with watch a marshmallow puff up and melt in the microwave. I remember being told that one of Franny's first rewards when she started at her school was holding a picture of me, which makes me want to cry. That girl is so sweet. Eventually those rewards become more age-appropriate and conventional. But it's important to start with something that is hugely motivated for them.

The other plus about finding out early is at least you can get your kid's name on the waiting list earlier than you otherwise might. So often, by the time we as parents are ready to act, they want services for their kids LIKE NOW and parents are being told that the waiting list is a year long.

Anyway, I hope that helps someone out there or someone finds it interesting to read. I found it completely fascinating. Oh and I almost forgot.

When Dr. Landa finished speaking, I leaned over and asked Melinda (Franny's consultant) a question about the presentation. She said, "We're having lunch with Dr. Landa today. Would you like to come." I was like, "uh... let me thing, YES!" She said, "I'm not sure where we're going to go." And I said, "I don't care!" We could have gone to Taco freaking Bell for all I cared. I felt so privileged to be there. I was so excited I almost couldn't concentrate in the next session. When we arrived, Dr. Landa was sitting next to Dr. Stroud, who diagnosed Franny with Autism. I've always said that if I had to have someone tell me my kid has Autism, I'm glad it was her. She is so kind and generous and just a wonderful physician. Then of course Melinda and some of her colleagues, including Natalie* who used to work with the kids here in Kirksville and now works where Dr. Landa works at Kennedy Krieger. And also Matt Stoelb who I've been hearing about for years now but never had the chance to meet until that day. Matt was kind of overseeing Franny's case when we first started with First Steps when Franny was 2 1/2. I was kind of obsessed with finding another Mom who could tell me something other than, "I wish I could tell you it gets easier..." or "You just to wait until you can accept it." I wanted something more than that. I wanted someone to give me hope. Through my friend Jordan, I found a girl who's son had Autism. They lived in Columbia and Matt worked with him there. She told me he was an intregal part of her son's recovery plan. Which is obviously how I feel about Melinda. It's so interesting to go back and read that email for the first time since she sent it two and a half years ago. I remember so desperately wanting to be able to say the same for my kid that she was saying about hers, and we are really getting there. It really feels like witnessing a miracle. Anyway, wow. Talk about getting off on a tangent. Yikes. Back to the lunch. It was incredible to be sitting at that table with so many people I respect and admire. I was the only parent at the table. There was no reason I should have been there, but I'm so grateful I was and so grateful that Melinda invited me. It was funny, Dr. Landa asked me about Franny's diagnosis and treatment, so I briefly described how old she was when she started ABA at our home with Melinda at 2 1/2 and then received the diagnosis at 3 from Dr. Stroud. It was so weird to be able to reference Melinda and Dr. Stroud sitting right there at the same table! I was like, "it's so nice to have you all here!" :)

*Franny had the opportunity to be part of a study that Natalie conducted at the preschool on joint attention. Natalie presented on this study at the conference and I along with two of the other mothers were able to go. Natalie of course gave all the children fake names. Franny's name was Emily. It was so weird to hear people talking and asking questions about our kids, obviously having no clue the parents were in the room. But also kind of cool. I just sat there thinking how lucky I was (and Franny) that she was able to be part of that study. That was a huge step in Franny's recovery, I believe. I was telling Natalie that it was about that time when we were driving home from school and Franny said, "Mom, look, a tree!" I said, kind of distantly, "Mmhmmm... yeah... " then I turned my head and shrieked, "wait, WHAT?!!!" Awesome. I didn't realize it right away, but we weren't used to hearing her say things like that. People have no idea how huge joint attention and just how important it is. I surely didn't.


Anne said...

Wow, so neat.

Julia Holmes said...

Wow Katherine. I know you hear this all the time...but you are such a good mom. Franny is so lucky. I can't believe how far she has come. Sounds like the conference was a great experience.

She is the sweetest little girl. I love how she asked if you were coming back and how her reward would be holding a picture of you :). Way too cute! Love you!

Brendon and Stephanie said...

What a good thing to write about. Everything was awesome, including the videos.

Dido to Julia: you are such a good mom. I love how you & Bobby treasure your children & are always so excited for them. Brendon & I were talking one day about how we should be taking notes from the two of you about how to treat your children.

Shonda said...

Katherine, great post! I love hearing about your journey with Franny. My son has Asperger's and I am here to tell you, it gets so much better!! Can you believe we didn't get dx'd until he was 7?? He is 11 now. It was a rocky road. We had intense OT because his sensory issues were pretty acute, vision therapy, speech therapy, and ABA therapy in a group. This year we have NO therapies!! Woo hoo! He is doing awesome. Something that really helped us is social stories. I also reccomend RDI books for the activities, but we never did the program officially.

Abby said...

Katherine, I'm an old friend of the Tanner family and have been following your blog for some time. I am the parent of a 17 year old son with Asperger's/HFA, who is really doing well. He has been able to be in all regular education since kindergarten (with some support, of course) and will be graduating high school in 2010 and plans to attend college. You should be very proud of yourself, you're doing a great job with your girls. I just wanted to let you know if you ever have any questions or concerns as Franny is getting older, feel free to ask away. I've spent many, many years accumulating knowledge, working with therapists, attending more meetings than I care to count thank you, etc and would be happy to share it with you as you need it. It's up to us parent to "pay it forward" and use our knowledge to help the next "generation" of kids. Keep up the good work!! God Bless you and your family.

Abby said...

Katherine, I'm an old fr

Jason said...

I'm so glad that you were able to enjoy the conference. How neat being able to go out to lunch with the "big wigs" lol.

Ashley said...

Franny's so lucky. I know you think any parent would do all this for their kid, but a lot don't know where to turn or are overwhelmed by it all. I've been amazed at how you've jumped in and immersed yourself with this. I have no idea what most of this stuff means, ha ha! We'll have to talk more about it so you can dumb it down for me. But just this morning as I grabbed Hayden out of her crib, I was thinking about head lag. Not that I'm concerned now, but I'm so glad I have a friend like you to help with understanding behaviors and such. Can't they just award you a PhD by now?

Chrissy said...

Katherine, thank you for this post. I love hearing that Franny is doing so good. She is an angel here on earth. I am also grateful that you took the time to post all this great information, I learned a lot and I'm sure that there are so many parents out there who are either wondering if their child is on the autism spectrum and/or what they can do. It was also fun to hear about Natalie, Melinda, and Matt. They are a great team. I've always told Jonathan that if we have a kid with autism, we're moving back to Kirksville. Jonathan's ped doc said there are very few autism programs here and she didn't know what ABA was. Scary! We miss you guys a lot and I always check your blog to see how you and the kiddos are.

tiffany said...

That was some great information Katherine. It was great. Let miss franny know that i said Hello and that miss her.

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