Sunday, July 29, 2012


One of the challenges we face with our son is going outside of our routine: i.e. Vacation! In the past we have had to head home after only an hour or two because of extreme anxiety and fear of the unknown (i.e. extreme meltdowns). We have learned a lot since then, but we still have challenges when it comes to vacation. We have been on vacation for the past week and a half with our family. In my book "I am Jake: My Life on the Autism Spectrum" I have a couple pages that share from Jake's perspective how his world is organized including preparing for vacation. On page 22, Jake's mom is using his picture schedule. This is something we use daily in our family, and has been a great help in preparing for change. It also provides opportunity for our son to have choices and control in some ways throughout his day. We use real pictures when we can because of his excellent memory. On page 25, Jake's dad is showing him pictures of where they will be going on a trip. We use this with our son way in advance of the actual trip. We began showing him pictures of the lake, lake house, boat, etc.. that we would be going to about 2 months ago. This time of preparation helps him to organize his world in a way that he can work through his feelings of anxiety and fear before we actually arrive. Now, this preparation does not eliminate his fear and anxiety by any means, but it does minimize it.

For example, on this trip we were going to be using a boat for the week. We talked about that boat for 2 months, watched YouTube videos of pontoons, looked at pictures of pontoons, face timed with cousins about the pontoon. When we arrived, we did not get the boat until 2 days later which allowed him time to see other boats on the water. When it was time to go pick up the boat, he did not want to go with the others. He wanted to stay at the lake house. I definitely gave him that option. We continued talking about using the boat throughout the day, and I saw his anxiety and fear trying to rise up. One thing that happens when he becomes anxious is his repetitive behavior increases. His repetitive behaviors is usually in the form of slapping his stomach. He did begin doing that. He also began saying "I want to take the boat back" over and over before it had arrived. I could tell he felt like he did not have any control of this unknown. This process went on for about an hour before the boat arrived. When the boat arrived, he said it was the wrong color and needed to go back. I gave him the choice of going down just to look at it while the others ate lunch. He walked down to the dock with me and and stared at it for a while. Then I began showing him the life jackets and told him he could pick his special one. He liked that choice. We stayed down at the dock for about 45 minutes just looking at the boat and exploring. We went up and ate lunch, talked about going on the boat (cousins were involved), and told him the plan for the rest of the day. We went down to the boat all together. I just watched him to see what he would do. He got on behind his older, adored cousin, and pointed out to her the life jacket he had picked out, and he began putting it on. He picked a spot on the boat and sat with both hands holding tightly to the railing, and didn't make a peep as the boat pulled out. I was so proud!!!!

In the past, without the 2 months of preparation, the 45 minutes of exploring, and the additional preparation we probably would have seen a much different experience. In the past without that, we would have brought him down to the boat on everyone else's time table and tried to get him on the boat with probably a reaction of extreme crying, running away, falling to the ground, refusal to go on, etc... I wouldn't have blamed him either. We then would have taken him back to the house and not tried again. He had so much fun on that boat. We have learned enough about him to know that he doesn't necessarily work on everyone else's time table. He does want to experience knew things, but when not allowed time for processing new experiences he shuts down completely. I loved watching his nervous excitement on the boat! He was able to do something that broadened his experiences in life. I am so glad we have learned this.

Now today we also tried to go to go to church with my sister while we are still here in Virginia. We did not have time to prepare him. In hind sight, we should have come about 30 minutes early to let him walk around the building, get his bearings, before we tried to have him sit in a completely new environment (different from his home church in Colorado). We did not do that, and we could not get him to come in until the last 5 minutes. He had so many tears and a look of panic on his face at the thought of going into this environment with new people, new chairs, new preacher, new music, new sounds, new smells, etc... He went into shut down mode. Some would say that he was being defiant, but we have learned differently over the years. He was scared, and we did not allow him enough time to process the change. So daddy stayed with him in the parking lot until he felt he could face the new situation.

So we have learned preparation, but it isn't always possible to do those things that help him so much. We can't plan out his entire day all the time and account for all changes, but right now at his age, we can certainly try to give him the time to structure his thoughts and world so that he will WANT to engage in life. Sometimes we won't be able to get him to that point and the experience will pass. But he is beginning to engage in so many more things on his own time, and if forced would have participated in none of it. I am thankful for the experiences that have taught me so much. My goal again for my son is that he will be able to become comfortable in his own skin and engage in life in his own way that brings him happiness.

What have your experiences been with vacation?

Friday, July 20, 2012

Our Journey Part II

So after we received our son's diagnoses of Autism Spectrum Disorder, Anxiety Disorder, Receptive speech delay, and sensory integration disorder, we began the process of finding the right fit for our son to receive intervention. There are so many "therapies" out there it seems to choose from, but when we actually were investigating all of our options they seemed limited. Our son did qualify for 4 days of preschool with all intervention services provided (OT, speech, behavioral intervention, social skills) in the classroom. Our experience for the past 2 years has been amazing! We are fortunate to have a group of therapists, teachers, and specialists that I can obviously tell have come to love our son. He goes to his preschool class 11 hours per week. He has thrived in this environment. We have had some setbacks with some changes that brought about some regression in the classroom, but the team has intently focused on those areas with my son.

The world of private interventions was even more difficult to navigate. As I have said in the previous post, I am a therapist that works with Autism Spectrum Disorders. I have given many families resources for intervention. When I began navigating this world of insurance, etc.. I found it daunting. Our insurance happens to be self-funded which means it does not have to follow state mandates for mandated services. For example, ABA therapy in Colorado is supposed to be covered (mandated) by insurance companies; however, our insurance because of the stipulation above will not cover any of it. ABA was the top recommended intervention for our son. I had done a lot of research into the different therapies, and at his age and developmental level, it seemed like our top priority as well. However, without insurance coverage we were looking at 2,000/per month private pay. Who can afford that? So I looked into several other options, child specialist counselors, programs, etc.. I have not been able to find a good fit for my son on the individual level yet. Then someone mentioned to me about an ABA certification program at University of Colorado/Denver. I looked into it and decided I was going back to school to learn the therapy/intervention that is backed by research and effectiveness. So I am in school again.

In the midst of that whole process, I began taking my son to occupational therapy. I never knew much about OT until we began. It is an amazing therapy that focuses on the neurological system and regulation in order for a person to participate in daily functioning successfully. My son and now my daughter have benefited so much from their "sensory diet." Click here for a short description.

We have also began looking into other developmental therapy models and found the Rocky Mountain Autism Center. They work from a SCERTS model. We are beginning this in the Fall. They provided group and individual therapy. The individual therapy is great because the desire the family to be included in all sessions (even siblings).

And then there are the things we have been implementing in our home to help our little guy be more comfortable with life. We have implemented picture schedules, teaching play dates (with our very supportive friends), structured outings with lots of preparation, etc... "I am Jake: My Life on the Autism Spectrum" has some of these things included in the book.

So for the past almost 2 years we have been trying our best to navigate the early intervention world. My husband and I are always questioning the balance (how much to be doing at one time, Not enough vs. too much). It is hard to determine. We have read the research on the success of early intervention for long term adaptability, but in the day-to-day it is still difficult to balance.

What has been your experience in navigating the therapy world with your child? I would love to hear from you!

Saturday, July 14, 2012

Our journey Part I (My Inspiration)

One huge advantage I have found in the Autism community is the strength that comes among those that are able to share their journey along the way. One of my biggest inspirations for my children's book was to share my story in a way that can also make a difference but also to connect with so many more families on the same road. So in sharing not only my book but also our journey, I feel the strength that comes from the community of families working together to make a wonderful life for their children. Please add to the discussion! I would love to hear from you and your child!

Our journey started about 2 years ago. I began noticing some different behaviors in my son that were increasing. After a very hard few months with my husband traveling a lot, several severe episodes, and increasing anxiety the conversation began between my husband and I about looking for help. Our first course of action was to go through the Child Find evaluation. Child Find is our early intervention program through our school district. The whole time before that, my thoughts ranged from: "they are just going to say he is a strong-willed child," "no need to worry, he just has a different personality," etc... I did not think he would qaulify for services for sure; however, only after about 30 minutes into the evaluation, one of the evaluators brought up the question "have you considered testing for Autism?" the unfortunate part was that my husband had an out-of-town business trip which he had to leave for half way into that evaluation. Therefore, with 2 kiddos in tow, I had to receive their feedback by myself while trying to keep the kiddos entertained. I am a therapist that works with children on the spectrum, and yet it was still so difficult for me as a parent to see the things that were apparent to others. In the back of my mind, these realizations came when my second child was born. They were such different children in behavior and personality.
These things prompted me to go through the Child Find process, but I still did not think I would hear those words. After receiving that feedback, hearing that my son would qualify for preschool with OT, speech,and behavioral intervention, we embarked on the testing journey.

I work for a clinic that provides developmental testing, so I knew the process. However, it was still daunting. There are only 3 facilities in my area that do developmental testing with private insurance. Children's Hospital being one of them, but I already knew they had an incredibly long wait. We waited for 7 months to have an evaluation. It was difficult sitting through the testing with my son, because I could see how uncomfortable he was with strangers, the demands of the tasks, and his unfamiliar environment. I wanted to rescue him from the demands and his anxiety. I have learned over the past couple years, that I am completely normal in my desires to rescue him, but the balance comes when I strive to help him become comfortable within himself through the things that life brings along. That means I can't always rescue him, but in a way when I provide him with opportunities to grow and adapt, I am still rescuing him just in a different way.

After receiving the feedback and 3 diagnoses, I was overwhelmed. Working in the field, I understood everything they were saying to me, but it was still difficult to hear. The questions started coming all at once in my mind. How can I help him? What do I need to be doing? What have I been doing wrong? So we began as a family to educate ourselves even more and begin to find the best intervention for my precious gift of child, my son. But one thing rang true and still does today. My son was the same precious little boy yesterday as he was the day we received the label. The label only helps us to understand him better and learn ways in which to reach him from his point of view in the best way possible to help him to adapt and grow as who he is!

Friday, July 13, 2012

You can now purchase "I am Jake: My Life on the Autism Spectrum" at my seller page listed below (click on the title below)and on the sidebar! Thank you for your support.

I am Jake: My Life on the Autism Spectrum

Tuesday, July 10, 2012

I am Jake soon to be for sale!

My family began a journey almost 2 years ago with my son Luke to find out how we could help him. Last year he was diagnosed on the Autism Spectrum with PDD NOS and also an anxiety disorder. In addition, he struggles with fine and gross motor delays and sensory integration. Through the past 2 years he has received remarkable treatment and services through Child Find as well as private therapy. He is making progress every day. Progress to me means that he is becoming more comfortable in his own skin, and he is beginning to enjoy life more in his own way. Through this journey, a year and a half ago I began writing a story about his unique personality and amazing character. It turned into a children's book to have a conversation with my child about the strengths and struggles that are a part of his life on the spectrum. I am also a therapist that works with children with Autism Spectrum Disorders and their families. Many of the children or adolescents I see wonder what makes them different. Many of the families I work with look for a way to have that conversation. I, as a therapist, also look for ways to educate and have that conversation with children in a way that leads them to be empowered through their difference. That is where I hope "I am Jake: My Life on the Autism Spectrum" will help. Through our journey with Luke we have implemented many strategies in the home that have helped my son with his aversion to change and anxiety to anything new and many other struggles. Some of those helpful tips are in the book. I can't wait to share it with you. My mission is to spread education and awareness that will lead to support and acceptance of children and their families on the spectrum.