First and foremost, this website is a blog. It is a collection of our families experiences living a life that includes the autistic spectrum as a part of it. We are blessed with a lot of really neat things in life and we feel that it would be a shame not to share some of the fun we are having with others.

So when you read our blog, please keep in mind a couple of things. One, we are sharing the intimate details of our lives with others so that they can enjoy, relate to, and benefit (possibly) from them. We are not trying to stir up controversy, even when we talk about what we like about one thing or dislike about another.

Put differently, please understand that there is our truth, your truth and THE truth. We are sharing OUR truth with you. We always welcome honest and open discussion, but we will not hesitate to remove any comments or remarks that we feel may be inflamatory, unkind, degrading or which will detract from our overall mission of sharing autism information with all of our friends who are or who know someone on the spectrum.

Thanks and happy reading!

Recently I was asked what I would want to tell the professionals who worked with my children, without even hesitating I said, “Be creative, be caring, be flexible and be a team player.” As I thought more later, I realized that the answer came out so easily because that’s been the key to our success so far. We have found ourselves surrounded by people who fit this description. The adaptations and supports we have used have come some from practical books and presenters along with highly talented therapists and school personnel. These people have become a part of our family; their committment and dedication to others has deeply touched my heart and their creativity has boggled my mind!

When Cameron was young and yet undiagnosed, we unknowingly used many adaptations and supports. One of the funniest looking back now involved his fascination with “Wheel of Fortune.” He liked it so much we would tape it so he could watch at other times. At the same time he was really struggling with separation anxiety (he was about 2-3 years old)- but we found if we took his ‘Wheel’ tape with us to a friend’s home, he would stay without any problems. Without any idea of what we had done, we had discovered the “Special interest distracter!” We knew he was very literal, was schedule bound and had an incredible memory- but no one knew what all that meant, at least no one that we could find there. It wasn’t until 2nd grade that the sensory, social and communication challenges of the day caused enough grief to get him retested. It was actually his speech therapist from when he was 3 who first brought up the possibility of Asperger Syndrome. He had no friends at school, he was the classroom ‘policeman’ and he had NO idea how to join in any games at recess. In fact, I drove by the school at recess time while making the preschool carpool run and saw him pacing the playground day in and day out. He needed the time to walk (he still does- only now he walks our dog at home) but he also needed an adult to run some form of organized play so he had rules to follow that other kids had to follow as well. Finally we pursuaded a teacher to take a jump rope out with the class and Cam had a game to join. The school also had a walking club and so Cameron could earn beads to wear on his shoelaces for how many miles he walked- it made his pacing pay off as a status thing. I’m pretty sure he had the most beads by the end of the year!

Third grade was a turning point for him. He got comfortable with having an assistant to walk and talk with; the teacher was VERY structured and he was in an environment that was suited to his needs. Fourth grade brought success. I don’t know how to even begin to explain what went on, but you won’t find it in any textbook.Cam’s inclusion coordinator took it upon herself to help him ‘loosen up’ alittle- by that I mean she recognized his desire to be included and have some fun so she started it off by including him in some of the silliness with the other adults who worked with her. She took his side playing jokes on his assistant from the previous year. Now I want to stop right here and say this won’t work for everyone- but what happened over the course of the next two years was nothing short of amazing. Cam went from having no friends to all the kids in his class got involved in this silliness. Suddenly he was cool! The plot went along the lines of this: the assistant had a fear of snakes and Cam’s teacher had a very fake looking yarn snake in her room- so it became the weekly challenge to hide it somewhere where this assistant would find it and then invariably, she would come back after him, once even getting the principal to announce over the intercom that the zookeeper was in the office looking for ‘Mr. Blackwell.’ Of course this was all done in a very controlled setting, with the coordinator acting as his guide through it all. I’ll never forget the day that she called me to tell me that my previously rule bound son, who was afraid to miss even a second of classtime, was chasing this assistant through the school with the birthday cake he had asked his current assistant to make- one with a frosting snake on it! They had turned my boy into a delinquent! HA- actually, his smiling face was pictured in the school yearbook holding that cake proudly for all to see. As big as his smile was in that picture, it didn’t come close to the ones Eric and I had on our faces the next year when at 5th grade graduation we were surprised to hear Cameron’s name called as “Roadrunner of the Year”- ‘roadrunner’ being the school’s mascot and the graduating class votes one girl and one boy each year for, among other things, being the best friend to others. The kid with no friends had come a long way.

School had become such a success for Cam, we feared middle school. We’d heard all the horror stories of bullying and the social difficulties- plus his organizational skills were (ARE) a challenge- we just didn’t know what to do to help get him ready. Again we found caring, creative, flexible school staff who were team players. I’d bring snacks to meetings and we’d sit and talk supports in an atmosphere of cooperation. There were challenges, but soon everyone was contributing ideas- extra student ID cards were safely stowed with different teachers, homework was not counted late the first missed day if he couldn’t find it, a teacher invited him to eat in her room rather than the cafeteria whenever he wanted to get away. He worked registration to show other kids around the school as a way to get back into the swing of things himself. My brother is a teacher and basketball coach at the school and he recruited Cam to be a manager so he got to travel with the team and be a part of the crowd. The same with the chess club- one of Cam’s favorite teachers organized the ‘Rock ‘n Roll’ chess club and Cam would help set up and run things. These activities gave him a social life and a place to fit in- but neither of them did that like band. He found his niche! The boy who had done Theraputic Listening to help w/ sound sensitivities LOVED band! By 8th grade, he was marching with the high school band in competition and helping conduct the younger bands. As mentioned before, he still needs to ‘pace’ alot, especially after school or other stressful activities, but now we have a 3 year old black lab who is full of energy and takes Cam for walks for hours at a time. The bottomline for Cameron has been trying to take his needs and adapt the most socially acceptable way to meet them. Now for high school…

Jordan was a very different challenge. While we kept hearing,”its all in your head” with our concerns with Cam, Jordan was developmentally delayed from the start so it was pretty apparent there was something going on from a very early age. We started physical therapy when he was 11 months old and by 15 months had added speech and occupational therapy. I refer to these three women as “Our Dream Team.” They all had sensory based leanings, they were all comfortable with their own skills enough to be able to learn from each other, and, in my opinion, they were all the best of the best. We met as a team monthly to discuss progress and set up strategies that would be carried out unitedly. We were getting conflicting diagnosies, it was like a roller coaster- one day we were told he was “mentally retared, probably autism” and the next “it will go away with age and therapy.” The constant in our lives was the progress we saw with these three ladies. Jordan only sat for a long time. Eventually he started to scoot on his bottom, making sure to keep his head rigidly upright and in alignment with his body. There was little or no imitation and seldom relatedness. He just kind of sat around. The therapists involved the whole family- Saturday mornings were ‘Cooking with Faith’- when our OT would come by and bring gooey stuff to make. We made alot of cookies and biscuits w/ her, she would sit at the little table in our tiny dining room and try to involve Jordan with his older siblings up to their elbows in dough. I think my most memorable thought of her time with him was when he refused to take a bath. Out of the blue, getting in the tub terrorized him. I came around the corner one day to find them playing with a bucket of water in my hallway- which gradually became playing with the bucket in the doorway to the bathroom- which then led to playing on the bathroom floor. Forever in my memory is the next scene- of this OT sitting with Jordan- both fully clothed- in our bathtub, playing with toys in the same bucket of water. Then she inched the water on and inched herself upward to stay as dry as she could. But he resolved the fear, one small step at a time.

Eventually he did learn to walk and talk, making major gains right as he turned 3 and headed for our school district’s preschool. Here we struck gold again. We found a teacher who believed that teamwork was in the best interest of the child and who was so creative and caring. She was a master at not pushing a child but of setting up ways for the child to succeed, often without them even knowing it! My personal favorite ‘trick’ was when Jordan wouldn’t want a certain part of snack- or to play with play doh- and she’d tell him he didn’t have to eat it or touch it- just give it to her so she could put it away. Invariably, he would and eventually he became much less sensitive and picky. She also utilized social stories with him to give him the tools he needed to handle situations. Even today, when I see him getting upset or frustrated, I will hear him take a deep breath, just like his teacher taught him.
(more to come)

When Cameron was little (and not yet diagnosed with Asperger Syndrome) he had a difficult time remembering which shoe went on which foot. I guess we corrected him alot because he became so obsessed with getting it right that he started asking if his SOCKS were on the right feet! We would smile and answer, “Socks don’t matter!” It became our little inside family joke- and soon it was used for any situation that was getting more thought or attention than it really deserved. To this day you can hear,”socks don’t matter!” in our family as a lighthearted reminder to keep our perspective.

Raising a family is challenging under any circumstances. We have four very unique kids. Our oldest son, Cameron. is entering HS- he was diagnosed with Asperger Syndrome in the 2nd grade. Craig is beginning middle school and is in the gifted program. Our daughter, Jamie, is in her last year of elementary school and deals with some yet undiagnosed visual/learning ’stuff.’ Our youngest, Jordan, is in elementary school and was diagnosed with autism by age two. We were initially told by “the experts” that he was “mentally retarded” and that they were “hopeful he would learn to communicate.” Jordan had amazing therapists in First Steps, talented and creative preschool teacher and assistants, and school personnel who saw his potential, not his disability. He has not had an inclass assistant in two years and gets advanced math work. He has played Y soccer and Rec league basketball; he loves cub scouts and going golfing.

It was at the time of Jordan’s diagnosis that “Socks don’t matter” took on a new meaning for me. Lance Armstrong has”10/2″ on his line of clothing to commemorate the day his life changed, the day he found out he had cancer. Sometimes I want a shirt with “12/10″ on it- the day Jordan was pronounced “mentally retarded probably autism.” Eric and I sat in the car outside the doctor’s office with our then 19 month old quietly in his carseat, we talked of the life plans we had for our son, and for ourselves, that had just changed dramatically. We went to a church Christmas dinner that evening and sat numbly at our table while all the celebrating went on around us. Soon my attention shifted to what did we need to do next. We already had the best therapists. They took a “family therapy” approach to everything they did with Jordan. We were all involved. It was time to take action.

At the same time, Cameron was struggling at school. Isolating himself from others and having outbursts that, though we saw them at home, he had not had at school.The answer came a few months later- Asperger Syndrome. It made so much sense and I actually felt relief to know what it was so we could deal with it and get him the supports he needed.

So in two months time we had 2 sons diagnosed with autism spectrum disorders. That’s where our faith took over. Our church congregation is like our extended family, they have been a huge part of our lives and the boys are as much a part of that ‘family’ as anyone. Our beliefs are that we existed before this life and that we go on after it- that this is just a time to learn and grow. I felt an overwhelming sense of peace as I got a clearer understanding that “autism” is not who my kids are but one of the challenges they face. Sometimes, especially as I’ve watched my sons overcome so much, I feel like it’s MY challenge to learn from far more than it’s theirs. You will not hear my husband nor I use the term “autistic” when describing our boys (not that there is ANYTHING wrong with the word) we instead say, “he has autism/asperger’s.” It’s our personal way of reminding ourselves it’s not who they are but what they have.

One of the most important things I would want a parent of a newly diagnosed child to know is that “socks don’t matter.” Parenting these guys takes so much effort, it’s imperative to keep perspective- to pick your battles and be able to laugh at the zaniness that becomes our lives.

One thing I’ve learned with “age and experience” is that you have to keep your own well full in order to give to others. It’s so easy with our kids to put our entire heart and soul into them- putting aside ourselves and our other relationships. I often refer back to a favorite quote you will see posted here numerous times, “no healthy relationship involves guilt.” There is no guilt for taking some time to yourself or for others in your life. In fact, it is imperative you do so, in order to give your heart and soul to those who need you.

One of the first things our First Steps therapists talked me into was signing up for respite services. We knew a few young women who were friends of our family who were willing to do respite for us. We knew we could trust these girls and so we could have some time out as a couple or I could go out shopping – or whatever- and not worry about home.

Indulge in a hobby- not something where you feel guilty for not completing projects- but something that you enjoy and that you do for you. It can be by yourself or with someone else (or a group), but have an outlet for your inner self somehow. Learn a new talent or work on an old one- I tease that I have ‘hidden talents- ones even I can’t find!’ but its important I take some time to enjoy MY journey as well.

Friends- you must have them! I am blessed with wonderful friends. Some are from our church and my work, a couple are from an online support group and we found ourselves breaking off from the group and ‘hanging out’ just the three of us. When our dear friends from our everyday lives can’t understand our frustration, we three can rant and cry and anything else to each other because we know what the other is going through and have usually been there ourselves.

Extended family can be a great help or a source of frustration. I have heard of families that get caught up in the ‘genetic blame game’ or other destructive comparisons. I know that supportive, understanding, NONJUDGEMENTAL family can make all the difference- especially when you have a child who is a picky eater at Thanksgiving or who has a hard time with crowds and noisy celebrations and needs to walk away while the 15 cousins are singing “Happy Birthday to You!”

My main point is this, you need time to rejuvenate yourself and your relationships. You need support from those around you and understanding when its not a good day- and there WILL be those days! Its OK to have those days and to let others help when they happen. Most of all- NO GUILT- raising our children is difficult enough without adding that burden. Take time to take care of yourself- you can’t afford not to.

On the way down to Orlando, we had driven all night- not a fun way to travel- so we decided to get some sleep and leave really early i the morning. We left the condo around 3:30am and besides a pretty nasty storm as we passed Atlanta, we had a pretty uneventful trip home, arriving by 6:30 pm. Our dogs were so happy to see us- they both just hung around Eric for days! ASA was a great conference, we enjoyed meeting so many wonderful people and spending time with dear friends. We are looking forward to MAAP and NATTAP later this fall when we can get together again!

On Saturday we went to hear Temple Grandin’s keynote and then spent time playing in the exhibit hall- especially the kids in the big bouncy house. Jamie went ‘trick or treating’- collecting freebies from the booths. She really liked the silly putty, google socks and earth balls.  The kids helped pack up AAPC and we said goodbye to friends then it was back to the condo and swimming. Jamie mentioned wanting to take a helicopter ride so she and I took a short trip over DowntownDisney- it was really cool to fly over the Gaylord resort- it gave a clear view of just how huge that place is!  We also stoppedi for alittle shopping- her new favorite pasttime!

Friday was when we presented. Jamie and Jordan spent the morning in the incredible pool at the Gaylord Palms Resort- the conference home- with a new friend. Then they met Eric and Craig at the sushi bar that became the family favorite spot to meet.  Our presentation went pretty smoothly , I really enjoy presenting as a family- its never the same twice and I gain insight into the others as they speak. Jamie had found a really cool booth in the exhibit hall- they sold fuzzy soft socks- three at a time and all three didn’t match- perfect for our presentation “Socks Don’t Matter” so she got a set and wore them (without shoes!) while she presented! It was perfect!!

Jen here, taking over the blog. Thursday the conference got into full swing- we attended a few sessions and had a great time in the exhibit hall- that’s the kids’ favorite place at conferences! Cameron continued to make friends and collect emails/phone numbers (he’s famous for that in our family!) Jordan was excited to see the book he reviewed for AAPC arrive. It’s called ‘The Chameleon Kid.” I love seeing my friends from around the country- they really inspire me- and besides, they are alot of fun!! Tomorrow we present, its alot less stressful this year (last year was our first time), especially since we just did our family presentation the previous month in Louisville, so there wasn’t much to do to get it ready. We got to attend the AAPC reception that night. Keith and Brenda Myles are the best! Then it was back to our condo and the kids hit the pool.

 I first met Ruth and Barry and heard them present on The Ziggurat Model at ASA in Rhode Island two years ago. My immendiate reaction to their presentation was, “These people GET IT!” The more I am around them, the more I am impressed by them.We sure enjoyed spending some quality time with them in Orlando- that’s Jamie with Ruth in the picture. They were kind enough to take time out of their busy schedule to answer a few questions

1. How did each of you begin working in the field of ASD and how did you come to work together?

 Both of us worked as psychologists in the public schools.  We shared many projects and often consulted with each other on challenging cases.  Our roles included working as part of autism evaluation teams, consulting regarding behavior interventions for students with ASD, and training staff to identify and provide services for those students.  While we were working with all students, ASD became our special interest and area of emphasis. 

2. What led to the creation of ‘The Ziggurat Model?’ Have you been at all surprised by its success? We created the Ziggurat Model out of a need that we observed.  As psychologists, we consulted with a number of school staff and parents.  A need for increased knowledge about the characteristics of ASD as well as effective intervention for individuals with ASD was evident. We saw some common pitfalls in the design of interventions for individuals on the spectrum.  Too often students were “blamed” for behaviors directly related to the underlying ASD.  This resulted in punitive responses.  There was also a tendency to put students into settings without adequate support. We sought to give people a process for effective comprehensive intervention planning  

At times, we have been surprised by the positive response.  The Ziggurat seems to have “arrived” at a time when many people were ready for and seeking a framework to provide structure to the intervention process.   We have seen the Model adopted at statewide and province wide levels.  The model has been applied successfully in residential settings, social understanding groups, and parent training.  The applications of the model have definitely gone beyond what we had originally imagined.

3. Who has inspired you? (note:not necessarily just folks related to ASD) Dr. Brenda Myles is an inspiration.  She works tirelessly to make a difference for those with ASD.  Her knowledge is encyclopedic.  Throughout it all, she keeps her sense of humor.   Parents of kids with ASD who not only diligently work to remove obstacles that may impede the success of their children, but who also serve as educators and mentors for the broader autism community are also inspirations to us.  Eric and Jen Blackwell and Kristi Sakai are prime examples.  They are the true experts.

4. Are you currently working on any new projects? We are working with experts in evaluation to write a textbook on interdisciplinary evaluation for diagnosis of ASD.  This is an area that we think is critical.  It is essential that evaluations be conducted by highly trained and experienced professionals working as a team.  Our hope is that this textbook will improve the preparation of professionals who will serve on interdisciplinary teams and as a result more families will have access to quality evaluations. We are also building a private practice in Plano, Texas.  The practice includes a team of professionals from a variety of fields who work together to provide higher quality evaluation and intervention services.

5. Outside of work, how do you enjoy spending time?

We both enjoy spending time with our families and friends.