It’s dinner time on Friday night. We’re all seated around the dinner table, happily eating, when Jasmine begins to sing.
Jasmine loves to sing songs, you see, and she has any number of pieces available in her repertoire. Way back in October or November, she learned Ring Around The Rosie, which has since made a come-back in popularity.
So as I said, we were all sitting at the dinner table when Jas starts to sing Ring Around The Rosie. She gets to “…ashes, ashes…” The next line should have been “we all fall down.” Instead, Jasmine fell off of her chair!
Trying desperately not to break down into a puddle of hysterical laughter, I breathed deeply and asked Jasmine if she was OK.
The day after Jasmine’s last day of school with the Early Achievements Autism Speaks research study (EAAS), she started her post-testing. What is post-testing, you ask?
When we first started the study, before the classroom opened to the kids and before my parent training started, Jasmine underwent PRE-testing. That is a series of tests that evaluates Jasmine’s general skills and knowledge, and lets the research team know where she was developmentally and cognitively. It was her baseline of sorts. At the end of the program, she went through all of those same tests again. It is how the researchers measure her progress and thus, gives them the data they need to draw a conclusion.
The testing process is pretty intensive and rigorous. We were scheduled for two days, 3 hours each. I won’t go into the details of the testing process, unless you’re suffering from insomnia and are looking for a quick way to zonk out, but I can tell you that my girl is a soldier! The room that the testing takes place in was stuffy that day, and I could tell that that was affecting Jas’s performance. On top of that, she was super duper bored, tired, and probably in need of a nap. Luckily, I had learned from my experience with pre-testing way back in October, and this time I came prepared. I packed lots of cold juice (watered down, thank you) and snacks, and I interrupted often to give Jasmine breaks. At one point, I even ran her up and down the hall, to get her revved back up.
During pre-testing, it was clear that I and the baby were a huge distraction to Jasmine, and I am sure that her scores from that reflected her lack of attention and focus. This time, I opted to watch from the observation room, which is a room adjoined to the testing lab and fitted with a two-way mirror or video equipment. This allowed for Jasmine to only focus on the test administrator, and occasionally the videographer, but she also knew I was close by if she needed me.
I wish I could show you all the videos from pre- and post-testing so you could see the difference in my girl. At pre-testing, she barely knew her colors, knew almost no shapes, had an extremely small vocabulary of maybe 10-15 words, and couldn’t sit still to follow instructions. During post, I almost cried with how amazing she was doing, even with being hot and tired and bored. Her vocabulary has jumped from 10-15 words all the way to…you know, she has so many words I can’t even keep count anymore! She can sit in her seat and follow instructions (Which doesn’t necessarily mean that she will want to, mind you. She is still a 3-year old, after all.), she knew all of her colors, all of her shapes, was able to count to 5 for the tester, and so much more! The words ROCK and STAR come to mind.
Folks, this is why research studies of this sort are so important. These classroom strategies get evaluated for their effectiveness, and if they prove to be beneficial (And I will be the first to stand up and say YES THEY ARE), it gives educators leverage to implement those same strategies and techniques into classrooms and early intervention programs everywhere. On top of that, it helps researchers to understand what we as parents are capable of doing for our children, and how to best serve the needs of children with autism.
In short, in order to understand the disorder, we have to study it.
I don’t have Jasmine’s scores yet to compare, but I am feeling pretty confident that she has made significant improvement in her speech, social, and cognitive functions. We still have a long road ahead of us, and to some extent it will be a life-long struggle for all of us, but the leap in progress Jasmine has made in 6 short months is astounding, and it makes me look on the future with a lot more optimism, stronger hope, and a greater sense of appreciation for Jasmine’s struggles and the work she has put into herself.
Shortly after we got Jasmine’s diagnosis, we were told about a research study being conducted at the Kennedy Krieger Institute that looks at the efficacy of early intervention when combined with parent training. When a family applied, they were randomized into one of two groups: a.) the child was placed in the classroom, and the parent would also receive training or b.) the parent received training only. The classroom was based on Kennedy Krieger’s renowned Early Achievements program, and is made possible – in part or in whole, I’m not sure which – by Autism Speaks. As a result, the study is aptly named Early Achievements Autism Speaks study, or EAAS.
October 2012
As it happens, we were lucky enough to get randomized into the classroom, which was fantastic but also a little intimidating. For one thing, it was in the afternoon, and Jasmine already had a morning class to attend. That would mean she would need to go all day without a nap, something that terrified me. The classroom was located inside CARD (I’ve talked about CARD in several posts, but primarily in my post Shameless Plug.) which is located about 25 minutes from my house, so not exactly close. I also had to attend a parent training session once a week, on Thursdays, while Jasmine was in class. All in all, the thought of driving back and forth to CARD, 4 days a week, for 6 months, with a 3-year old and an infant seemed a daunting task. Still though, I was ready and willing and determined to do whatever I could to help Jasmine reach her full potential.
And really, that was my singular focus, to help Jasmine. What I did not expect was how much more we all ended up getting out of the program. To be honest, I’m not sure where to begin on this part of the topic, and I have a million thoughts, so I’m going to do my best to keep it all condensed and organized. I make no promises, however.
First and foremost, Jasmine made amazing progress and improvement while she was in the program. I mean, in just those few short months, it’s like she’s a whole different Jasmine. When she started, she was just beginning to put 2 words together. By the end, we were having basic, if short, conversations with her. On top of that, and perhaps more importantly to me, while in the program she began to notice other children. It started with her classmates, and since has translated outside of the classroom. Further, she has made friends, real and true friendships that she has forged herself, with the children in the classroom.
To parents of “typical” children, that may not seem to be that big of a deal, and understandably so. However, the one rampant theme that you can find running through the life of every single parent of a child with autism is this: I just want my child to have a friend.
Jasmine wasn’t the only one benefiting from the program. Remember that I said I attended parent training? Well that was another daunting task that intimidated me in the beginning. By the end, I found my self so in love with the classes, that I wanted to go through them all over again. We learned techniques and strategies that I can see myself using for many years to come, probably with some tweaks as the girls age. We learned play strategies, song routines, how to read, how to build vocabulary and expand to sentences, how to create routines for our every day activities, and so much more. Don’t get me wrong, it was a lot of work, for sure! But it was worth every minute, and I wouldn’t give up a second of it.
To add to all of that learning that went on with me and Jasmine, there were also bonds forged that mean more than I could ever have imagined. As I said, Jasmine made friendships within the classroom, but also the parents have all become great friends as well! We have visited with each other outside of the classroom, had play dates, gone for a child-free night out, attended birthday parties…we have even promised to attend all the children’s graduations and weddings and reunions. Oh yeah, we are in this for the long haul!
On April 11, it all came to an end. The program had run its cycle, we had all graduated out of our respective classrooms. The teachers ended class an hour early so we could have a party. It was the saddest, and happiest, party I’d ever been to.
What I didn’t mention above, because I was saving the best for last, was how amazing Jasmine’s teachers were. There were three of them in Jasmine’s classroom, and some days I’m sure they wished there were three more. Yet they never, not once, complained or looked frustrated. Heck, half the time they didn’t even seem tired! Every day after class, they would take the time to talk to each of the parents for a few minutes, and give them specific feedback on their child. They always had great things to say about Jasmine, and even when a concern cropped up, it was always addressed in a thoughtful and positive manner. Jasmine loved her teachers, even if she wasn’t able to verbalize it. I knew because every day, the second the elevator doors would open – and a few times, BEFORE, they had really opened – she would bolt out of the elevator and run at top speed down the hall, around the corner and into the classroom, with me trailing behind, calling out to her in the hopes of getting a kiss, or even just a wave. She always ran into the classroom with her face lit up and a huge smile. Everyone knew Jasmine, and everyone knew to get out of the way when she came running through.
The kids loved their teachers, and the teachers loved the kids right back.
To show our appreciation for those wonderful ladies, the parents and children got together and created something we’re all very proud of.
Each child has their own color for their handprint. And of course, we framed them.
We presented them to the teachers during the party and they loved them. Unfortunately, we were all already crying by that time, so I’m not sure how good of a look they all got at the time. Still it was a beautiful moment.
These last couple of weeks have been hard on me and the girls. We’re having trouble getting into our new, lessened routine, and we all miss our friends, the program, and the teachers. It’s difficult when things end, especially good things. It’s hard to say goodbye to people you care about. But as one of the parents said, “It isn’t the end, it’s only the beginning.”
Jasmine and her teachers, Jessie, Hattie, and Becky.
April is Autism Awareness Month, as many of you know, and some of you may not. Last year, April was just another month in the year. This year, April has turned out to be the busiest of months. I find this to be a welcome change of pace, especially after how badly March sucked. No really, March was pretty awful.
To kick off Autism Awareness month, the Kennedy Krieger Institute rolled out a new initiative to screen INFANTS for autism. That’s right, you can get your baby screened early for signs of possible autism spectrum disorders. Now, I know what you’re thinking, “Why would I do that? Why would I need to get my baby screened?” Well OK, if you’re on your first baby, or if none of your children have been diagnosed with an Autism Spectrum Disorder so far, that is a valid point. That being said, we all know the “1 in 88″ statistic, that is: 1 in every 88 children will be diagnosed with an ASD. KKI’s new initiative is actually aimed at the infant siblings of children already diagnosed with an ASD. You want to hear an even scarier statistic?
Here’s the really cool thing. KKI is offering a FREE developmental assessment for infants between 5 and 10 months old, who have a sibling diagnosed on the spectrum. That’s right, they are offering this invaluable service to families in the area at no cost. How cool is that?! You’re wondering if I’ve enrolled Laurel, Jasmine’s baby sister, in the program, aren’t you? Well it just so happens that Laurel and I were part of the research study that helped to develop the assessment test.
Late in the afternoon on Monday, April 1st, I got a call from one of the teachers in Jasmine’s KKI classroom. She wanted to know if I could come in the next morning to do an interview about the sibling assessment. Since Jasmine happened to be on Spring Break from her a.m. class, I agreed. The details were simple – Our local CBS affiliate, WJZ-13, would send a representative out to interview me about the new infant sibling initiative, along with Dr. Landa, the director of KKI’s Center for Autism and other Related Disorders (CARD). They wanted to know what the initiative was, why it was important, and what our experience with it was.
In a complete panic, I drove at top speed to my favorite boutique to get something appropriate for the camera, only to find that they had closed an hour prior. Crap!
Anyway, the next morning I practiced all that I wanted to say while I drove myself and the girls to CARD, and thought I felt pretty prepared until I pulled up and saw this:
OMG! I’m really, really going to be on T.V.!
Immediate butterflies! I tried to play it cool, I tried to pretend I do this sort of thing every day. At first it worked. The PR rep, Jen, escorted me to our meeting area in one of the classrooms, and while we were in the elevator she said, “You’re in luck! You got Ron Matz for this interview!” She was so excited and all I could think was, “Who the hell is Ron Matz?”
We stepped off the elevator and practically ran into him, Mr. Ron Matz, and my stomach jumped up into my throat. You see, we don’t watch T.V. in our house, and haven’t for several years. To be more precise, we get absolutely no T.V. channels, so we only watch movies or whatever T.V. shows are out on DVD. However, we did get T.V. channels once, and to my dismay, I knew exactly who Ron Matz was. Because Ron Matz is part of the main corp of newscasters at WJZ-13. Suddenly, I was back to butterflies.
Ron Matz is a really, really nice man! He was easy going, and tried very hard to put me at ease, which worked until the camera was switched on. The rest was quite a blur. I remember telling myself not to talk too fast, not to talk too softly (a bad habit I have when I’m nervous or around people I don’t know), and not to trip over my words. I wasn’t completely successful, but he cut my interview together nicely so that I don’t sound like a complete idiot.
I have tried to make light of my interview, but I want to make something very, very clear to you. If you think, if you even suspect, that there may be something wrong with your child’s development, be it mild or major, don’t be afraid to get it checked out. If your doctor or pediatrician won’t help you, talk to your friends and neighbors, or do a web search. Keep asking and talking to people until someone gives you a phone number, a name, a website, an organization, something! There are programs in your state that want to help your child, please find them and give them a call.
“There’s nothing to be afraid of. The sooner you know, the sooner you can move forward…”
It has recently come to my attention that a local toy store would like to make a sizable donation to the Kennedy Krieger Institute’s Center for Autism and other Related Disorders, or CARD, and they would like your help to make that happen. Before I get into that, let’s talk about what CARD is, exactly.
I’ve talked about CARD before, in previous posts, but I’ve never really talked about what part CARD has played in our Adventures in Autism. CARD is where all, or at least the vast majority, of the research in autism therapies and interventions take place. Jasmine’s afternoon class was one such research study, funded by Autism Speaks, and looked at the effectiveness of early intervention. That program, EAAS (Early Achievements Autism Speaks), has been directly responsible for the amazing leaps in progress that Jasmine has made over the past 5 months.
CARD also boasts clinicians such as Developmental Pediatricians, Occupational Therapists, Speech and Language Pathologists, Behavioral Psychologists, etc. Many families have come to CARD for evaluation, and many families still come to CARD for treatment and care.
Along with all of that – and if all of that wasn’t enough – CARD also has a variety of programs aimed at preschool aged children, both typically developing and with a diagnosed Autism Spectrum Disorder. They’re like preschool programs, but with the aim of helping those with an ASD to integrate into a standard classroom setting, as well as to tackle speech and social delays.
So what I’m saying is: the folks at CARD are all pretty bitchin’!
So here’s the deal – aMuse Toys, located in Fells Point, MD, will donate $10 worth of Melissa & Doug toys and games to CARD for every 10 “Likes” they get to their Facebook page, up to $1000, until April 28th. No seriously, all you have to do is go to aMuse Toys’s Facebook page and “Like” it. Easy peasy! You can read about their campaign here: http://www.amusetoys.com/blogs/news
And don’t forget about ROAR for Autism! Even though my ankle is STILL a mess, I am still going to participate. I’ll drag my foot through the course if I have to. You can donate at my personal fundraising page here: DONATE!
Why should you donate to ROAR? The funds collected for the ROAR event go directly to CARD. Those funds are used for all sorts of things, including teacher salaries which, in turn, goes back into our kids. And to sweeten the deal, one of the ROAR sponsors – CAREFIRST – will double all donations received on Wednesday, April 17th! So your dollars can reach even farther. So set your alarm, and consider donating a few dollars tomorrow morning to an organization whose work is so important, and so far reaching.
This post is going to stray away from the focus of this blog, as I thought I would give you all an update on my training for the ROAR! for Autism 5K event that is coming up.
This is exactly how I look when I run….in my mind.
For my training, I like to use the Couch-to-5K Running Plan. I have used this plan with great success in the past, several times in fact. I have run in two 5K’s between my pregnancies with Jasmine and Laurel, and I have found that I really love to run. The Couch-to-5K Running Plan is a fantastic program that is designed for exactly what it says it is; to take you from a couch potato to 5K running shape. It is a 9-week program with three workouts per week. They even have an app now!
So on Wednesday, February 27th, after I dropped Jasmine off at school at the Kennedy Krieger Institute, Laurel and I drove home and got suited up for our run. Laurel, of course, would be riding in the jogging stroller, while I would be hitting the pavement in my favorite running shoes.
It was a beautiful day, especially for February. I plugged my iPhone into the speakers on the jogging stroller, zipped up my hoodie, and we headed out. It was a great run – I worked up a nice sweat – and Laurel was excited to be riding around the neighborhood at such a quick pace.
About halfway through the half-hour program, I looked up and saw a large, thorny bush that was hanging out over the sidewalk, completely blocking my path. Luckily there was a driveway just in front of the bush, so I steered the stroller down the driveway with the intention of going around the bush. Unfortunately, that’s when tragedy struck.
My left foot landed on the lip of the driveway, where it meets the road, and rolled under me. I heard a crunching sound followed by a loud POP, and then my ankle just exploded in pain! I went down onto the ground, taking the stroller with me and skinning up my opposite knee and leg. The pain was so intense that for several seconds I didn’t know where I was, nor could I hear the baby screaming in terror, there was only pain.
This is not my x-ray, my foot and ankle are far more fabulous than this!
Slowly I began to regain my senses and was able to pull myself together enough to right the stroller and reach into it for my phone. I took a quick inventory of my injuries and found that blood was running down my leg from my right knee, and my left ankle was in seriously bad shape – I couldn’t flex or point my foot at all. I could feel that it was swelling, and I knew I wouldn’t be able to walk properly on it. I dragged myself and the stroller – with a still screaming baby in it – out of the street and onto the curb, and with big, fat tears rolling down my face, I called Russ to come get me.
After hanging up, I soothed the baby as best as I could from the ground, and decided I didn’t want to just sit there and wait, I hauled myself up using the stroller as a crutch, and inched my way toward home, dragging my injured foot behind me like a zombie.
It took me 20 minutes, but I finally made it home just as Russ was pulling up. He got me and the baby situated in the car, and then he drove me to the E.R. I won’t bore you with the details of the visit but I will tell you that they cleaned up my knee, gave me a tetanus shot, wrapped my ankle and foot and put it in a removable splint called an air cast, gave me crutches, and determined through X-rays that my ankle wasn’t broken. I’ll be following up with an orthopedic specialist on Tuesday, just to make sure.
Laurel, who was in the stroller when it tipped over, was perfectly fine and unharmed, but was given quite a scare. I felt terrible that I couldn’t do more for her at the time, but she recovered quickly and was back to being her same old happy self. I’m so glad I had her buckled in properly, and that I remembered to wear the safety strap on my wrist, otherwise there could have been a much worse outcome. Safety first, kids!
So what does all of that mean for the ROAR! event in April? Well, this is a pretty significant injury and will likely set me back 2-4 weeks in my training, hopefully no more than that. I intend to get right back to my program as soon as I get the “all clear” from the doctor but there is no way I’ll be able to complete my training before the event.
This is an obstacle, not a road block!
I fully intend to be present and participating in the event come race day. I’ll use the event as a training day, which means I’ll have to walk some of it. Worst case scenario, my crutches and I will hop across the finish line.
That’s right folks! I will be participating in the Kennedy Krieger Institute’s ROAR! for Autism event on April 28th, regardless of injury or training progress. To that end, I am still fund raising and asking for donations to benefit this wonderful organization that works so hard to help so many. Please consider making a gift on my behalf, and ROAR with me for the millions of children around the world who can’t!
As a general rule, Mondays are the worst day of the week. In fact, if I were to do an informal poll on the subject, I’d be willing to bet money that more than 95% of the responses would be in favor of skipping Monday altogether.
I, on the other hand, had a great Monday! Truly, it was one of those days when everything went right, and it all started with… a dance party.
Normally, Russ handles the morning routine of getting Jasmine ready for school and dropping her off, but he needed to get into work early on Monday, so I took on the job. It’s nice to get to step in once in a while like that, but I’m always a little nervous about subbing in on well established routines. I’m afraid I’ll miss some critical step, and that it will negatively impact the rest of the day. Still, it’s a nice change to my own routine, and even though I spend all day with my girls, I cherish every second I can get with them.
So fast forward to around 9:10 a.m. Jasmine’s school has a loop that is specifically for dropping kids off. In fact, it is a literal loop, so that is all you can do: pull up, drop off, move along. We were just about to make the turn to pull into the loop, when Lady Gaga’s “Americano” comes on the iPod. Jasmine absolutely loves that song! I looked in the review mirror and see her bopping along to the music, something that always brings a smile to my face. Unfortunately it was going to be short lived since we were already, more or less, at the school. So I pull up and get out, leaving my door open, then I open Jas’s door and help her out of her car seat. The instructional aid from Jasmine’s classroom came out to help, and I reached into the back seat to get Jas’s coat and hoodie. That’s when I heard her little voice say, “Mommy, dance with me.” Her face was so full of joy, how could I refuse? The aid and I looked at each other, and, with a line of cars behind us, we danced. The other teachers and a couple of the parents joined in as well, and it really became a dance party then! I looked down at my little girl, and I can tell you without doubt, she was so happy! From her curly hair down to her painted pink toes, she was happy.
Our little party lasted no more than a minute, but that was enough to set the tone for the rest of the day. When I went back to pick her up, I made every green light on the way there. I got a great report from her teacher. She ate well at both breakfast and lunch. I got another great report from her teachers at Kennedy Krieger. That night for dinner, Jasmine ate pizza for the first time in 2 years. Laurel, the baby, was happy and playful all day. Even Russ came home reporting a good day.
Later that night, after she had gone to bed, I peeked in on Jasmine while she slept. Her face was so peaceful and angelic. As I brushed a curl off of her face, I realized that I learned a very important lesson that can only be taught by a child.
