Different, Not Less

My Daughter On The Autism Spectrum



I find myself, more and more, saying to people, “I wish you could have known Jasmine a year ago, the difference is remarkable!” In fact, I just said that very thing on Monday to a Speech-Language Pathologist who was giving Jasmine a speech evaluation. It wasn’t until I was driving home that I realized, it really has been a year.

One whole year!

On August 2, 2012, we had a team from our county’s Infants and Toddlers program at the house. Laurel was a scant 4 weeks old, and we were all still trying to get used to our new routine, our new schedule, and our new addition. Our house was a mess, and so were we. I’m not even sure Russ and I got showers that day. Still, this was an important meeting and, nervous though we were, we were looking forward to getting some answers.

I remember being so stressed out while the team, who consisted of a Speech-Language Pathologist (SLP), a cognitive therapist, and a service coordinator to keep it all organized, were sitting in our tiny, cramped living room. Jasmine wouldn’t look at the ladies from I & T at all, she wouldn’t answer any questions or follow any directions. She just kept buzzing around the room like a dragonfly on a caffeine drip. It was typical of Jasmine to some extent, but that morning she had cranked the dial up to 600!

After that meeting, we scheduled our twice monthly home visits with the SLP and cognitive therapist, and things began improving pretty much immediately.

Here’s the thing; at that meeting, Jasmine’s vocabulary was down to only about 10-15 single words. She had no spontaneous speech, and the only multi-word sentences she spoke were those that she learned AS sentences. Things like “I love you, too.” On top of that, Russ and I could only understand her speech maybe 50% of the time, and people that didn’t live with us could only understand her about 20%.

In addition, she couldn’t follow directions, she couldn’t sit still, she could only participate in parallel play with other children, and generally preferred to play alone. We have a friend who converted a portion of his basement into a theater room, with stadium-type seating, and a humongous screen. I remember that we were all at his house for a cookout, along with several other families, and all the kids were piled on top of each other in the front row of the theater room, watching a movie and laughing and having a good time. All the way up in the top row, all by herself in the corner, was Jasmine, watching the movie, and completely silent. I went to the bathroom and cried.

It wasn’t that other kids left Jas out of the fun, it was that Jas didn’t know how to engage with them. It was heartbreaking.

Now here we are, a year later, and not only is Jasmine several inches taller, but she has made huge leaps in progress!

At home, Jasmine has A LOT to say. She is mostly past the single word phrases, and is now regularly constructing much longer and more sophisticated sentences. Her spontaneous speech surprises us every day, we just never know what she’s going to come up with! She follows two-step directions, and I have completely lost count of her vocabulary.

Socially she is still struggling, but even that has improved. She asks for help now, she asks for vocabulary to objects that she doesn’t already know, and she notices when people aren’t around. She has even expressed a desire to see her friends.

We still have a long way to go, she is in no way at an age appropriate level, but considering how hard she has worked, and the strides she has made in one short year, I feel good about the future. I feel good about her future. And I’m proud of my little girl.

Jasmine - July 4, 2013 - 3 1/2 years old

Jasmine – July 4, 2013 – 3 1/2 years old

Jasmine - November 2013 - 3 years old

Jasmine – November 2013 – 3 years old

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Ring Around The Rosie



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.

“Oh shit!”

I had to excuse myself from the table.

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The Study of Progress

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.

Jasmine, you are fantastic!

April 2013

April 2013

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The End of the Beginning

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

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.

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.

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I’m a Local Celebrity!

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?

1 in five

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.

You can see my interview for yourself here:  http://baltimore.cbslocal.com/2013/04/02/kennedy-krieger-initiative-helps-identify-autism-spectrum-for-at-risk-infants/

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…”

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Shameless Plug

CARDIt 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’!

894535_10151896384003266_775543233_oSo 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!

ROARWhy 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.