OCALICON 2015

Two weeks ago, I attended OCALICON for the second consecutive year. For those of you that don't know, OCALI is the Ohio Center for Autism and Low Incidence and they have an annual conference in Columbus every November. I'm a nerd for research conferences and it was great to attend this year with great friends. Last year I went not knowing a single person, but so much has changed in the past year and I've made so many great friends and professionals in the autism community. There were lots of great presentations to choose from this year, so I packed as much as I could in over the three days.

There were a few reoccurring themes throughout the conference that stuck out to me. Some of the hot topics included: interoception, emotion regulation, UDL, anxiety, and peer-mediated intervention and instruction (PMII). I picked up a couple of great new books: Uniquely Human by Barry Prizant, PhD. and Interoception: The Eighth Sensory System by Kelly Mahler. Another book I'm planning on ordering is Kindergarten and ASD: How to Get the Best Possible Experience for your Child by Margaret Oliver. A few of my favorite presentations included Social Emotional Engagement Within a Universal Design for Learning in the Classroom by Emily Rubin, Uniquely Human by Barry Prizant, Self-Regulation Techniques from the Perspective of a Young Adult by my friend, Chloe Rothschild, Teaching Emotional Regulation: Essential Skills for Students with ASD by Lori Jackson, The Kindergarten Transition: How to Advocate for a Smart Start for the Child with ASD by Margaret Oliver, and Complexities Within Diagnosis and Treatment: Exploring Anxiety and ASD by Szanto, Gonda, Loudon, and Perren.

A few good apps I came across during the conference were KidConnect by The Connections Model, LLC ($11.99). It is designed for students with ASD as well as individuals with other behavior/regulation issues. It helps individuals understand their behavior by pairing the behavior with the underlying cause: their feelings. It is used to prevent kids from having to leave the classroom to work through their behaviors. LOVE this idea. Another great app is MindShift. MindShift (free) allows you to set up a personalized plan to help manage your anxiety and learn coping skills. The third app I learned about at OCALICON this year was the Therapeutic Listening app by Vital Links.

I'm sure I will be posting several more times on specific topics from OCALICON so stay tuned!

My friend, Chloe, and I.

Timocco - Virtual-motion, Therapy Games

I recently attended OCALICON and, while there, I stopped at the Timocco booth. I had heard of Timocco before, but it was great to meet Eran and Jayne and learn more about Timocco. This is a fantastic, interactive product for anyone looking to improve their fine or gross motor skills or just looking to have some fun! My son loves Timocco and it holds his attention while keeping him on his feet. I have attached some videos of him playing Timocco so they would all be in one place. Feel free to ask me any questions about using Timocco or contact the staff at Timocco. They are awesome!

Kai playing Falling Fruit

Kai playing Order Up

Kai playing What's Next?

My Two Superheroes

Back in June, a friend of mine informed me of an awareness walk being held in September at the Toledo Zoo, hosted by NWO Apraxia Support. We had already registered for an awareness walk with another organization for that same day so I did not think we would be able to do both. But the NWO Apraxia Support Family Fun Day & Awareness Walk sounded too good to miss. So I made the decision to change our plans and we registered. Fast forward to this past weekend.

My parents, myself, and my two superheroes attended the NWO Apraxia Support Family Fun Day & Awareness Walk on Saturday and my kids were treated like absolute superheroes. This organization recognized 93 superheroes, which includes children with Childhood Apraxia of Speech (CAS) and other invisible disabilities (Autism Spectrum Disorder, Sensory Processing Disorder, Anxiety, ADHD, etc.). They provided these superheroes with capes, medals, thousands of dollars worth of  donated therapy items, and a visit from the Toledo Police Department SWAT Team (dressed as superheroes). Included in the cost of registration were also t-shirts, lunch, admission to the Toledo Zoo, carousel ride, etc. There was also a live auction, a silent auction, and a DJ.

      

Needless to say, I am now a proud supporter of NWO Apraxia Support, and you should be too. This is one of the few organizations out there that provides practical, tangible, needed support to families. They also have a grant program, which provides families with funds to supplement therapies, treatments, activities or equipment. Most of the items provided for the auctions and to the superheroes were donated by equally awesome organizations. A big shout out to those donors for contributing to the day. To see a list of the sponsors, click here.

Saturday was a day my kids and I will never forget. After everything they've been through, they deserve to be treated like superheroes. Thank you, NWO Apraxia Support, for making that a reality.

Equine Therapy and Why We Love It

My daughter has been a rider with Riders Unlimited Inc. in Oak Harbor since June 2014. It was determined that Karys had some developmental delays in October 2013. She was officially diagnosed with Autism Spectrum Disorder in August 2014. She struggled with echolalia, speech delays, social delays, among other things. I noticed very early on that she has a love for animals. Equine therapy has a lot of physical benefits for individuals with disabilities, but I chose to sign Karys up because of the social and communication benefits I knew it would have for her. 

Karys on her first day at RUI, June 2014

I did not grow up around horses, and do not consider myself a "horse person", so I was a little apprehensive signing Karys up for the program. However, I was quickly reassured by the staff's attentiveness and expertise. They have taken Karys in and taught her all the basic riding techniques, as well as leading, filling water buckets, feeding, etc. As Karys gets older, I expect us to get more involved in helping out with chores at the barn on a regular basis.

Ready to ride, June 2014

I will never forget the look on Karys's face on her first day. She was in love. It is difficult to recognize some of her delays when she is interacting with the horses, because she opens up around animals. Another rider about a year older than Karys has been riding on the same day and time since Karys started in the summer of 2014. Karys immediately started saying "hi" to the little girl and walking right up to her and waving. I don't think I had ever seen her interact with another child like that before. She had always kept to herself or played in a corner reciting her movies over and over. 

Leading Sprite back into his stall after a session

Since Karys started equine therapy (among other therapies), she has become more social, more engaged, and her speech has dramatically improved as a result of that. She still has some delays but she is making great progress. Animals bring something out in her that people never could. 

Karys in her favorite RUI shirt

Riders Unlimited offers spring, summer, fall, and winter sessions for individuals with disabilities. According to their website, The program is "open to individuals four years old and older who have been diagnosed with a disability and referred by their physician to participate." They also offer riding lessons open to the public.

Karys and Sprite

RUI is hosting a fundraiser later this month: the annual Runners for Riders 5k Costume Run/Walk. The event will be held at 8:30 a.m. at East Side Park in Fremont, OH on October 31. Even if you don't want to participate in the run/walk, please wear your costumes and come cheer us on!

RUI Costume Run/Walk, October 2014

For more information on RUI, please visit their website or their Facebook page. 

My Two Soccer Rockers

My two soccer rockers did great at their first game last night!! I am so proud of them. I'd been waiting for this day since before they were even born. If you would've asked me a year and a half ago if I thought Kai would ever be able to play (let alone at 3 years old), I would've said no. If you would've asked me 2 weeks ago if Karys would be able to play I would've said no (which is why I didn't even sign her up officially and she doesn't have a team shirt). But here we are!! That is why you NEVER SAY NEVER with autism. Or anything.

Karys was only good for one quarter, but Kai hung in there the entire game. He hated sitting out every other quarter! Karys was mad because she said she wanted the ball! (I told her to run faster).Most importantly, they had so much fun. Their coach is so patient with them and really is exactly who they needed as a coach. I told him about Karys's diagnosis (because it's rather obvious when she wanders off the field), but not about Kai's. Kai is his little buddy and coach calls him batman because Kai wore his batman shirt to the first practice. I don't know how we keep getting so lucky meeting the right people for us. This has definitely been a year of many positive changes for us.

LOTS of changes for Team K lately!

There are LOTS of changes going on for Team K lately!

I made the decision last week to pull Karys from dance this year. It wasn't an easy decision, but I've known for quite awhile that it was not her thing. It's not what brings her joy and I don't want her to do anything that doesn't bring her joy. I danced for 10 years, Karys has been dancing since she was 18 months old. But she is at a point in her communication now that I was able to ask her if she likes dance and she said "no, all done". I verified her understanding of my question by asking her if she liked horse riding (equine therapy) to which she promptly responded "yes".

If you saw my post yesterday, you know that we are in the process of switching speech therapists. We are also coming up on Kai's last session with PLAY Project. He has made so much progress over the past year and a half so I am okay with this transition. He has reached FDL 6 with very few holes in the first 5 FDLs. I think he will continue to progress on his own just fine. Karys STARTS PLAY Project in October and I am THRILLED about this. It's something she's needed for a long time and the grant we recently received will pay for an entire 9 months of this therapy for her, which is a load off my shoulders.

Another new thing happening for Team K is that Kai has his first soccer practice EVER next Wednesday and his first game September 15!! I am so excited to see how this plays out since he will be the youngest in the league. I have no doubt he is ready though. Karys may even decide to play next year. She asked for a pink soccer ball the other day and said she wanted to play!

I will continue to keep you updated on all the exciting things happening with Team K this year!! :)

A thank you letter to my daughter with autism

When people meet our family, it is not uncommon for them to peg my daughter as having autism and my son as being neurotypical. (Surprise!) they are both on the spectrum. But I'm not surprised by their "guesses". My son does now appear to be neurotypical and has made so many improvements over the past two years I cannot even recall all of them. He was a fully engaged baby, but by 18 months he had lost his "ability" to make eye contact. He would not respond to his name, lacked joint attention, and did not play with toys appropriately (i.e., he would only throw them over his head onto the floor repeatedly). He had five words at 14 months and by 18 months, he had lost all of them. Thanks to early intervention services, he started receiving speech therapy at 20 months and PLAY Project at two years old. By 20 months, he had learned how to sign for "more" and by 2 1/2 he had started picking up words again. By age three he was enrolled at the local public preschool where he receives speech therapy and has the best teacher and paraprofessional I could ask for. He is now one of the most engaged, talkative, and social children around. He has very few autism "markers" remaining.

I attribute his progress to his amazing therapists and teachers, myself and my parents. What I hadn't realized until this morning as I was watching home videos from around the time my kids were diagnosed was how much my daughter contributed to my son's progress. I get asked a lot if I think her autism caused his delays. Meaning, he was not able to learn from her like most younger siblings learn from their older siblings. I have always known that was never the case because my daughter was never non-verbal. My son would have picked up words from her; they just would have been used in inappropriate ways (i.e., echolalia). He never once mimicked her echolalia or gibberish. In fact, she has had the opposite effect on him. In every single home video I watched, she was engaging him, making him laugh, forcing him to interact with her. In those videos, to an untrained eye, they appear somewhat neurotypical (albeit with limited or no language), constantly smiling and laughing. They have always been close and they have always engaged with each other more than with other children. The difference now is that my son has taken those skills and generalized them to other settings and with other children. My daughter has not.

It is so difficult watching my son catch up to my daughter in almost every area. At this rate, he will pass her soon, if he hasn't already. In fact, just this weekend I caught him brushing off her request to play along with her scripting routine. The rate of her progress is nowhere close to his. It's hard for me to even admit that. Partially because I don't want to believe it's true and partially because I wish I had done more sooner. I wish I had started her on PLAY Project right away (2 years ago). I wish I had started taking her to private speech right away (2 years ago). I assumed (because she's so smart) that she would pick everything up right away and start making rapid progress. And while I know she has made progress, it wasn't at the rate I was expecting. And maybe it was naive of me to expect anything, but as a parent I think you can't help yourself. I know by most standards she is considered high-functioning and she has overcome her echolalia for the most part, which was a huge hurdle. But I see neurotypical kids her age playing on the playground. I know how far behind she still is. I see all the progress she's made but I also see how far she has to go.

Of course I am thankful for all the struggles we get to avoid, but there are also a few things we still struggle with daily. My daughter is about to start PLAY Project and private speech which I hope will both be positive experiences for her. Regardless of the challenges she will continue to overcome, I hope she someday realizes what a difference she has made in her brother's life and in his developmental progress. They are too young to ever remember what life was like for us these past two years, but I will remember. And I will say to my daughter: thank you.