Whatever Works

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)

Socks Don’t Matter

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.

Calgon, Take Me Away!

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.