Dealing with the diagnosis

This has been a very difficult entry for me to write. Every time I thought I had down what I wanted to say, I would read it and realize that I didn't get my meaning across at all! Basically, what I want to tell you is that the little things don't matter. In the long run, the diagnosis of "Autism" or "Asperger's" or whatever else you are dealing with is just a word. Ultimately, what really matters is that you love your children and you want to do what is best for them. If that means you need to restructure your whole life so that the world makes sense to them, then no problem.

I have decided to just leave it at that. I had tons more written on this subject, but every time I proof-read this entry, I felt that it seemed lacking. I believe the path towards acceptance of your child’s diagnosis is one that everyone must travel at their own pace. No one can tell you a cure all for helping you accept the diagnosis. The best thing I can do is tell you that I have come to terms with it myself, and find that it is not such a bad thing. My children are incredibly special. Perhaps not in the ways I envisioned when they were newborn babies in my arms, but in ways that I could not have even dreamed back then. They are unique and wonderful and I would not change a hair on their heads.

Step Two: Structure and Routine

Our lives were in complete and total chaos. What should have taken us ten minutes would take an hour, and what should have taken an hour would take all day long. Often, rather than trying to convince my boys to do something for me I would just do it myself. Every task, even a minor one, was a chore and nothing ever seemed to get done. I remember very well our bedtime “routine” in the early days. We would start getting the kids ready for bed, and several hours later would finally have them there. Most nights we would collapse from sheer exhaustion after finally getting them in the bed. I walked around with a tremendous burden of guilt because I knew that while I was spending so much time and effort getting my boys ready for bed, my precious daughter was getting herself ready and would often fall asleep before I could even kiss her goodnight. We knew that there had to be a better way, if we could only find it!

This is where we began on our path toward where we are today, with children who get themselves ready for bed at night and ready for school in the morning, almost completely on their own. We now have time for a story, bible study, prayer as a family, and just having fun. Our methods have worked for us, and I think they could work for others as well. The key to finding a good routine is to create one based on your own life.

Our first attempt was based on the picture exchange method of communication. We made a page with pictures of every single thing the kids needed to do before bed and then handed them this page when it was time to get started. At first we would walk them through the steps: “number one, put on pajamas”, “number two, brush your teeth”, etc. Gradually the boys were able to do these steps all on their own. It was a wonderful improvement! We still needed to stand watch for any mishaps, but were finally available to spend more time with our daughter as well as the boys.

As the months went by and the boys learned what we expected of them, we were able to change the routines, simplifying them in many ways, and also increasing their responsibilities. Today our boys need to only be told that it is time for bed. They know exactly what to do, and can do it all on their own.

The Steps to Success

When we first thought about writing about our "success story", I began trying to think of a way to explain what we have done. Honestly, to us, it has been a trial-and-error approach, and a whatever-works approach. But when I look at our approach from an outside perspective I feel like it is more of a step-by-step approach.

Our journey has included three steps so far:

• Step One: Communication is Key
  
• Step Two: Structure and Routine
  
• Step Three: Shake Things Up!
  

Step One:
Communication is Key

I have written some about the first step, but will plan on writing more about this. I have this as the first step because until you open the communication barrier with your child, you cannot move forward with anything else. I have written about what worked for us with teaching our children to communicate early on, but this is an on-going process, so I will include more information on how we have continued to break down this barrier.

Step Two:
Structure and Routine

All children thrive on structure and routine, but for special needs children routines are not just an option, they are a necessity! I will talk about how we taught our children to cope with the outside world by giving them the structure and routines to live by.

Step Three:
Shake Things Up!

After you get them into a great routine, the next thing you need to teach them is to roll with the punches! The world will not always follow the path that you have laid out, so the children need to learn that it is okay when things are different. My children are perfectionists and teaching them that messing up is okay has been a very important part of their development.

Step One: Communication is Key

When the boys first started at the special needs preschool they were being treated for delayed speech development. I remember very clearly the day I realized that we needed to do something. It was late Fall in 2005. The boys were over 3 years old and still not talking at all. Up until this point I had attributed their lack of speech to the fact they were twins and twins are known to develop speech later than single birth children. Finally, though, with the help of family and friends I came to the realization that we needed to intervene. We contacted Student Services in Madison County and scheduled an appointment for the boys to be evaluated.

I cannot speak highly enough about the special needs program in Madison County. From the moment I contacted them I had a sense of relief and peace. They came out to our house to evaluate the boys at home and we were always treated with the top level of respect and encouragement. They were all a Godsend to us. Ms. Hope (right) was our first teacher at the special needs preschool. She was such a blessing!

Picture Exchange

Soon after the evaluation the boys started at the special needs preschool where they worked on developing a method of communication while they learned to use their words to communicate. The first method we were taught was the picture exchange method. With this method they would grab a picture of what they needed and show us. This resolved many issues that before would have ended in tears.

I went around the house and took pictures of their favorite things for personalized picture exchange cards such as a peanut butter sandwich (Ryan's favorite) and chicken and cream cheese roll-ups (Colin's favorite). We also used generic cards for picture exchange, like potty, bathtub, time to eat, and many more.

I also made picture cards for apple juice and milk. The boys love apple juice and before we learned about the picture exchange method they would just grab the bottle from the refrigerator to bring to us. This was fine, except that is was very heavy, and left us open to a potential emotional breakdown if they dropped the bottle. The picture just made it much easier.

We would also use people pictures to tell the boys where we were going when we needed them to get ready. It didn't always click with them for us to say, "We are going to Barbara's house," or "We are going to school." But, if I showed them the picture at the same time, then Whammo! Success.

We used the picture exchange method heavily for about a year and a half. As the boys learned more words to express their needs and feelings we were able to gradually work our way away from the picture queues.

Sign Language

The special needs preschool uses very basic signs to help the children communicate their needs. They also use these to reinforce the language development and help the children learn what the words mean. Colin and Ryan learned to sign the alphabet very early on. In fact, for Colin especially, signing the alphabet was a way for him to calm himself when overstimulated. He could focus his attention on signing and block out the distractions around him. This was especially useful when he broke his arm and was in the hospital waiting for the bone to be set. While the doctor and several nurses were working on him we had him sign his alphabet (with his left hand, since it was his right arm that was broken), and this helped keep him calm and well distracted until the anesthesia took effect.

A few of the signs they used heavily included:

• "More" - This is used mainly by the child when asking for more food or drink.
  
• "Help" - This is used by the child to ask for help with something, such as unbuckling the seatbelt to their chair.
  
• "Where?" - This was mainly used by the adults to help them understand what we were asking them when we wanted them to find something, like their bookbag or jacket.
  
• "Please" - As they learned to ask for what they needed I emphasized saying please with the request. I would often (and still do) use this sign to prompt them to use their good manners.

To be continued...

I hope you have enjoyed reading this as much as I have enjoyed writing about it. It is a great feeling to look back on where you have been and see how far you have come. This is a work-in-progress. I am sure there will be many edits and additions to this before I feel like it is finished (in fact, it may never be completely finished). Thanks for reading & please feel free to leave your comments.