That's all I'm giving myself to write about today.
Today was a big day, and normally I would spend an hour and a half on a post like this. I want it to have accompanying videos and images and be worded just perfectly. But I don't have time. And I know if I wait until tomorrow it will never get done. So whatever I can come up with in ten minutes will just have to do!
My Franny has been receiving therapy since September 2006. We're going on four years! It's called EIBI (Early Intensive Behavioral Intervention) or ABA (Applied Behavioral Analysis). It has changed our lives and hers for the better. When we were first told that she would need 25 hours of therapy a week at 2 1/2 years old, I could hardly believe it. The day she turned three years old she started going to school from 8 AM to 3 PM and had 1:1 therapy all day. ALL DAY. We noticed a huge difference right away. We have had amazing therapists, para's, consultants, doctors, and administrators helping us along the way. People that now feel like part of our family.
I could go on and on about this, but I have a deadline.
I got a call today from one of Franny's consultants. You see, Franny has had a whole team of people who evaluate her needs and her progress on a monthly basis. She said that Franny is ready to "graduate" from the EIBI program. Which basically means she has caught up to her peers. She'll still receive a few services like speech therapy and she'll work with a writing specialist, but nothing compared to what she had before. No team, no monthly meetings, no EIBI minutes.
I can't believe it. It's been such an emotional day. I remember taking this video footage the first day of therapy. She screamed and screamed because she didn't want to play "my turn" with Melinda. (Melinda would pass the ball to Franny and then say "my turn" and Franny was to give it back.) It's a video of a very sad Franny. I remember that as I was recording her melt down, I was hoping that someday I would come back to watch this video and say, "Wow, look at how far she's come!" Today's news is exactly what I hoped and prayed for when we first learned about Franny's diagnosis. I prayed so hard for this. And now that we're here... it feels great. It also feels scary. We won't have the same support we're used to having. And I will miss seeing these people regularly. It's so exciting! There should be a big party with all the people who helped her get to this point! Melinda, Mary, Tiffany, Chrissy, Karen, Stephanie, Jen, Mary Ellen, Liz... and OH SO many more. Bobby and I are both so grateful for the help she has received and so proud of our Franny, the hardest-working kid we know.
It was a good day. Wow, look at how far she's come!
Showing posts with label autism. Show all posts
Showing posts with label autism. Show all posts
Tuesday, June 22, 2010
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:
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.
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.
- 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
- initation of behavior regulatory acts
- diversity of gestures/consonants
- frequency of triadic gaze
- initiation of joint attention
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.
Thursday, September 11, 2008
Travelocity
One day my dad received two phone calls within two hours from two of his children. Richard and Julia had both totaled their cars in two different states. Ever since then if one of us calls crying, it makes him crazy. Once I called him from Julia's phone on April Fools' Day and pretended to be Julia and while feigning a distraught and troubled voice, I cried, "Dad?! I've been in an accident!" How mean is that? I quickly followed it with a loud and gleeful, "APRIL FOOLS!!!"
So this morning when I called him crying, I quickly told him the reason so he wouldn't have to worry that anyone was injured, dead, or missing. It was for a silly reason- I never actually paid for the flight I was supposed to board with my two daughters tomorrow afternoon. I found and selected the flight the night before we left for Idaho, and I thought I paid for it, but apparently I didn't. After searching my email for a confirmation, calling Travelocity, and verifying with my credit card company that no charges would be made, I'm convinced I made a really stupid mistake late that evening on the 15 of August by not clicking that last button. That last button is always hard for me to click. It's painful to click the button that's going to withdraw $400 from your account.
Well, after an hour on the phone with a call center worker from overseas who calls himself, "Gary", I gave up on Travelocity and tried Hotwire instead. It took "Gary" five minutes to locate the Kansas City airport on his list. When he was reading off one of the flight options, he told me the arrival time was "one three PM." I said, "you mean, 1:30 PM?" Him: "No, one three PM." Me: "Oh, you mean 1:03 PM." Him: "Yes ma'am, one three PM." Yikes. Instead of flying out tomorrow, we fly out on Sunday morning for only $50 more a ticket than we were planning on paying before. So I feel lucky.
Anyway, this day obviously got off to a weird start. And I've been trying to think of the bright side of being here a few more days. Maybe I can convince Bobby to come home from St. Louis for Friday night and Saturday. Maybe I can actually take the time to blog about our trip to Idaho/Utah. Maybe I can get some more pictures up on the walls and finish my quilt (which is SO close by the way- I love it!)
I stumbled across a blog today that had posted this inspiring video. Please take a few minutes to watch it if you can. I was so touched by the love and understanding this 13 year old girl has for her little brother David who has Downs syndrome.
I feel a little overwhelmed with all the attention that special needs kids/adults are getting with everything that's going on in politics and the media, with Obama's stand on abortion, and Palin's son, and that movie Tropic Thunder that came out. The low expectations that our society places on individuals with disabilities saddens me. One of the most important things I've learned about Franny through our experience is that I can expect a heck of a lot from her. She has surpassed my expectations enough in the recent years that I've learned to always set them higher. I remember her consultant Melinda saying once that whenever she starts with a new kid, whoever the kid is and no matter what their behaviors are or how nonverbal they may be at the time, she always assumes that child can be taught to speak and use words. If something comes up later that will stand in the way, like apraxia, or some other diagnosis in addition to autism, then that's fine, but she always starts out believing they can be taught. As a parent, I was so impressed and inspired by that. I think it's influenced the way I feel about Franny and what she is capable of.
So this morning when I called him crying, I quickly told him the reason so he wouldn't have to worry that anyone was injured, dead, or missing. It was for a silly reason- I never actually paid for the flight I was supposed to board with my two daughters tomorrow afternoon. I found and selected the flight the night before we left for Idaho, and I thought I paid for it, but apparently I didn't. After searching my email for a confirmation, calling Travelocity, and verifying with my credit card company that no charges would be made, I'm convinced I made a really stupid mistake late that evening on the 15 of August by not clicking that last button. That last button is always hard for me to click. It's painful to click the button that's going to withdraw $400 from your account.
Well, after an hour on the phone with a call center worker from overseas who calls himself, "Gary", I gave up on Travelocity and tried Hotwire instead. It took "Gary" five minutes to locate the Kansas City airport on his list. When he was reading off one of the flight options, he told me the arrival time was "one three PM." I said, "you mean, 1:30 PM?" Him: "No, one three PM." Me: "Oh, you mean 1:03 PM." Him: "Yes ma'am, one three PM." Yikes. Instead of flying out tomorrow, we fly out on Sunday morning for only $50 more a ticket than we were planning on paying before. So I feel lucky.
Anyway, this day obviously got off to a weird start. And I've been trying to think of the bright side of being here a few more days. Maybe I can convince Bobby to come home from St. Louis for Friday night and Saturday. Maybe I can actually take the time to blog about our trip to Idaho/Utah. Maybe I can get some more pictures up on the walls and finish my quilt (which is SO close by the way- I love it!)
I stumbled across a blog today that had posted this inspiring video. Please take a few minutes to watch it if you can. I was so touched by the love and understanding this 13 year old girl has for her little brother David who has Downs syndrome.
I feel a little overwhelmed with all the attention that special needs kids/adults are getting with everything that's going on in politics and the media, with Obama's stand on abortion, and Palin's son, and that movie Tropic Thunder that came out. The low expectations that our society places on individuals with disabilities saddens me. One of the most important things I've learned about Franny through our experience is that I can expect a heck of a lot from her. She has surpassed my expectations enough in the recent years that I've learned to always set them higher. I remember her consultant Melinda saying once that whenever she starts with a new kid, whoever the kid is and no matter what their behaviors are or how nonverbal they may be at the time, she always assumes that child can be taught to speak and use words. If something comes up later that will stand in the way, like apraxia, or some other diagnosis in addition to autism, then that's fine, but she always starts out believing they can be taught. As a parent, I was so impressed and inspired by that. I think it's influenced the way I feel about Franny and what she is capable of.
Thursday, May 29, 2008
Frances Scout
We've been getting to see a lot more of this cute little bug because she has had this week off school. It's not often that we get to have Franny home when Sophie and I are doing our normal routine. But every time we do, I get used to it and enjoy it and it makes it so hard to send her back to school. I am hugely grateful for Franny's school. It is absolutely right for her and I love that she can go. But it's also been really nice to have her home. After Sophie went down for her nap I put a movie on for Franny and did a little sewing. When her movie was over, she came and found me and gave me a big hug. She wanted to help me so I let her use the "big" scissors to cut the threads. She loves to help.Today was our first day at the outdoor pool this summer! We had a great time. Especially Franny.
A little more on Franny:
She likes to take pictures now. Usually of me and Bobby. I think I'll make a collage of her work and post it sometime. After she took a picture of me, she wanted me to take a picture of her in front of a black backdrop I hung up for my aprons. At the last second she did this crazy dance move and jumped to the side. I loved how the picture turned out.
Franny has certain items of clothing that she really likes. A pair of stretchy pants that are 2 sizes too tight for her, her yellow "flower pants" that my Dad sent her, and this set of pajamas that my Grandma made for her. Only she HAS to wear them with these shorts over them. She came up with this on her own and we think she thinks it looks awesome. Oh yeah, and just fyi, she was wearing two pairs of panties in this particular picture. Not sure why.
I took the girls to Columbia last week for Franny's checkup with Dr. Stroud. She is a developmental pediatrician and is the one who gave Franny her diagnosis. We love her. We love her staff. We love visiting her office. So we were both happy and sad when they told us we didn't need to come back for our regular six-month check-up. They feel that since Franny is doing so well they won't need to see her for another year. In fact, her nurse practitioner said that Dr. Stroud didn't even need to come in on this visit because of all of Franny's progress. I said, "Aw, that's nice... I still want to see her, though." So I thought I better snap this picture since we won't be seeing her for a while. We love Dr. Stroud.
I don't write about autism enough. I'd like to be helpful to other mothers and families who have to face the challenge of raising a kid with autism. I don't know why I don't. I think I have a healthy approach to it. It doesn't scare me like it used to at all. I've learned so much and we've had so much help. And yet, 2006 started with a speech diagnostic test at the nearby university and ended with her autism diagnosis in December. It was one of the hardest years of my life and it totally rocked my world. There was a time when I really wanted to hear from another mom that it gets better. That someday I would feel okay about Franny's autism. That the sorrow and grief I was dealing with was normal. What's wrong with me anyway? Why am I always looking for validation? Is this normal? Am I normal? I finally found what I was looking for in a book, and then again in another book. Karyn Seroussi's book "Unraveling the Mystery of Autism" and then in Catherine Maurice's "Let Me Hear Your Voice." Well, it did get better. It got A LOT better. So why don't I write about my experiences? I wish I knew and I'll try to be better.Here's something from Seroussi's book that I could really identify with:
"If this is so common, why haven't I heard of it before? I just discovered that there are two other children with autism on my street? Why wasn't I warned? This is not happening to me. I didn't sign up for this. I'm not cut out to be one of those noble parents of the disabled. But what if it is true? What if my beautiful, perfect baby has a severe, lifelong disability? The answer is this pain in my body. The answer is that my child has been kidnapped and no officials can be notified, no suspects can be questioned. Life goes on as usual, but my baby's soul and spirit are gone."
So sad, I know. I was crying really hard by the time I finished this paragraph. It felt good to know that someone else out there had felt the way I was feeling, though. And we got her back. And it took a lot less time than I expected it to. She started looking when we called her name. We saw her start using her finger to point. She started to learn words and to use them to label things. She learned how to follow directions and her eye contact improved. We started to witness miracles on a regular basis. There were so many who made such a difference in her life and ours. Since she was 2 1/2, she's had a team of people who get together monthly to discuss her progress. These people feel like family to me. I don't know what's going to happen with Franny. Obviously we can't predict the future, but I am thrilled that my little Franny is so happy. I never could have imagined that summer of 2006 what a cheerful, obedient, sweet little girl she would be as a 4 year old. I wish someone could have told me that 2 years ago. It probably would have saved me a few sleepless nights! :)
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