More on Step Two: Routines

I write about what is weighing most heavily on my heart at the time. My hope is that this blog will help others, but selfishly, it is also a way for me to work through my personal struggles. One of our struggles has always been getting anywhere on time. This is not only a struggle with my twins, but with all of my family. We are habitually late arrivals. I remember at my wedding my friend commented on how I was not even close to being ready to walk down the aisle at about 30 minutes till time to go. I told her that they couldn't start without me. This was true, but unfortunately, not everything revolves around our timeline.

After the children arrived our perpetual lateness did not improve. In fact, we were later and later. At one point my husband commented that we should just forget going anywhere at all. This was ridiculous, of course, but it did get us thinking about what we could do to help the situation. We developed a few schemes to help us, and I think they could help others as well. These steps were not only for the benefit of our boys, but also for our "normal" daughter who, honestly, suffers from the late-gene more than the boys.

Task Lists:

We would literally write down every single thing we needed to do before going anywhere, and then have the children go through these step-by-step. This was a great help... at first. Eventually the boys became so engrossed in doing everything on the list perfectly, that it became a hinderer more than a helper. So, we moved on.

Alarms:

My old cell phone has the capability of programming up to five alarms, so after the written lists stopped working to our advantage I set alarms on the phone for each step in the morning.

For example:
6:30 Wake up!
6:45 Get dressed
7:00 Go eat Breakfast
7:20 Brush teeth
7:30 Time to go

This worked wonderfully, but like everything else they eventually grew out of the need for it. Now we continue to use the "Wake Up!" alarm, but all others have gone by the wayside (although at times I feel we still need the "Time to go" alarm).

Teaching Independence:

The most important thing about using these routines, is that you are teaching your child independence. They are not reliant on you for prompting on every single task in the morning and evening. They can, and will, do these tasks themselves if only they know what is expected of them. Using these steps with our children and teaching them independence, not only improved our perpetual lateness, but also made for much happier and less stressful days for all of us. We are still a very laid back and go-with-the-flow type family, but now we can do it mostly on time.

Hypersensitivity

To this day I have heart palpitations and begin to hyperventilate when I walk into Walmart. I try to stay out of the place, but on occasion I have no choice and must enter in. On those rare occasions I try to take deep breaths, keep my mind on what I am there for, and get out as fast as I can. Why do I have this strange aversion to a place well-loved by so many? It's a funny story (or not, depending on your point-of-view)...

Many years ago when my children were little I was in desperate need of a few household goods. Normally I would never attempt to take three small children into a store without any help, but like I said, I was desperate. At first all was well. We walked around gathering our items. The boys were moderately interested in what was going on, but mostly content. Megan was happy to be out and about, and we were moving right along. I have no idea what happened, but something definitely did, because all heck broke loose. The boys started screaming and kicking, Megan started crying, and I started desperately trying to soothe them all. It was pandemonium. I quickly completed my shopping and got out as fast as I could. Months later I decided to attempt a visit again. This time immediately upon entering the store the boys started screaming. As you can imagine, we did not go back again for a very long time.

Since that time I wondered, what was it that caused the meltdown? Was it the lighting? Was it the cramped aisles? Was it, perhaps, the eerily smiling yellow face? I may never know for sure, but I have a few guesses.

Children with autism often have issues with hypersensitivity. They are super sensitive to sounds, smells, textures, and lighting. Once you recognize the problem for what it is, then you can see a course to help deal with it. After our boys began attending the special needs preschool we started learning coping mechanisms to handle their hypersensitivity.

When my boys were three-years-old I cut all the tags out of their shirts because they would bother them so much they could not concentrate on anything else. When Colin was five he would pick holes in his socks because he could not bear to have any loose strings sticking out. I didn't let this bother me, I just bought him more socks and he eventually grew out of it. I bought the boys earmuffs to wear at night because they would curl up under their blankets holding their ears to block out all the sounds, and would get way too hot. We avoided situations that really bothered them, but did not let them completely back out of anything. We taught them to work through their sensitivities and not around them.

I am still not completely sure what caused the meltdown in Walmart, but my best guess is that it was overstimulation. Their senses, which were already heightened, were on overload. I am sure that there were warning signs that I missed at the time, but now would immediately recognize. That is just part of growing and learning. You learn what upsets your child, you learn their signals of becoming agitated, and then you learn how to help them deal with it. The best advice I can give you on this is to watch your child and use your best instincts; trust yourself and love your child, and you will also learn how to help them deal with the world around them. My boys can now go into the large stores with no problems, they sit out in church with the super loud music, they wear their shirts with tags intact, and request scissors to snip the strings on their socks.

Meltdowns... seriously?

It is hard to explain to someone who has not experienced a child in full meltdown mode what it is like. Some may think this is just a tantrum and should be treated as such. These are no tantrums. A child in meltdown mode is a hurting child. He feels that something is not right but does not know how to fix it. Perfectionism goes hand-in-hand with autism, and when there is something "wrong", real or not, this is an incredibly upsetting thing for the perfectionist. It is a kneejerk reaction for us to assume that a child who is acting up in a store must be spoiled, or have bad parents, but this may be very far from true. It can be difficult for us neurotypicals to understand why someone can't just ignore a little mistake such as a drop of juice on your shirt, or a crayon mark very slightly outside the line, but for a child with autism, that little mistake is horrifying.

Before we learned coping mechanisms to deal with this, my boys would become extremely aggitated at the slightest little error and these episodes would often spiral down into a full on meltdown lasting a minimum of an hour. As they grew older we worked on teaching them that it was okay to make a mistake. In fact, "it's okay" became our calming phrase. As they were learning to deal with this, we were also learning. The most important thing we learned was to remain calm at all times. Our children (all children) look to us for our reactions and how we respond will directly affect how they deal with the situation. If we became upset when a glass of milk was tipped over at supper, a two hour ordeal could ensue; whereas if we simply said, "oh no, but that's okay" and cleaned it up calmly, then they could also deal with the problem simply and not be bothered by it. Often I am told that I have incredible patience, but honestly, this is not necessarily something I was born with, but something that has been taught to me by my children.

Full Meltdown Mode - Now What?

It is inevitable - meltdowns will occur. We have learned several little tricks to help smooth the waters a little and make the meltdowns less frequent and more manageable.

Time out... for you!
You will only be helpful to your family if your mental wellbeing is well intact. So, if you feel yourself becoming frustrated take a time out from the situation. Remove yourself, take a small break, and then return when you have collected your wits.

Safe Zones
Your child needs a safe zone where he can pitch his fit and not hurt himself. My twins' bedroom was their place. For years it only had a bed (mattress on the floor) and a few other minor pieces of furniture. It was a very sparce place, and looking at it you would almost think that we couldn't afford furniture for them. (Not that this wasn't necessarily true. I was a stay-at-home mom for six years, afterall).

Tag Team
Work together with your partner and not against. I have found that often when my children are not responding to me, my husband can step in and they will start to calm themselves, and the opposite is also true. I believe that sometimes they are upset but honestly have no idea why (or at least have forgotten why after a few minutes of the meltdown), and changing things up will give them just enough of a break to allow them to start to relax.

Rewards (or the Lack of Rewards)
As a general rule I don't like the idea of rewarding a child for something that he should be doing anyway. However, special circumstances require special techniques. We have used rewards, or the lack of rewards to help our children calm themselves. For example, the threat of no ice cream money can sometimes help when all else has failed. This usually is only helpful when the child still has a rational thought.

Trust Yourself
The most important thing I can tell you is to trust your instincts. No one can give you an instruction manual on how to deal with a child in full meltdown mode, but you will know what to do if you believe in yourself and your child. Often I find what works completely by accident. I will start talking and by the grace of God the right words will flow out. Believe in yourself, trust your instincts, listen to your child, and remember, this too shall pass.

More on Communication: Index Cards

As the boys learned to read they became fascinated by written words. Everywhere we went they wanted to read the words on signs. I made this work to our advantage. I started carrying index cards and a marker around with me at all times. If I needed the boys to focus on something I would write the word down on the card and hand it to them. For example, at church their classroom was upstairs in the preschool wing and to get to the outside door we had to walk all the way down a very beautifully decorated, very distracting hall. It would often take us 15-20 minutes just to make our way out of the building. This was only serving to get me, my husband, and our daughter very frustrated. One day we decided to try the cards approach here - I wrote in big letters "CAR" on two cards and handed each boy one while telling them that it was time to go to the car. It worked! They walked down the hall while looking at their cards and we made it all the way out in less than five minutes!!! I did have to remind them a couple of times when they would start to get distracted, but as soon as I would remind them they would look back at their cards and keep on moving.

This, of course, was a continuation of the picture exchange method. Without the groundwork laid by the pictures, the cards would not have worked at all. The main point is to find what interests your kids the most and use it to your advantage. With my boys, written words worked wonders. With your children pictures or sign language may work better. The most important thing is to know your kids and be willing to think outside the box to find what works.

Communication: Preventing Meltdowns

Before we learned to communicate with each other meltdowns were an almost daily occurance. Our boys could not tell us what was bothering them. They just didn't know HOW. They only knew that throwing, hitting, kicking, - anything was doing something different, and I believe doing those things made them feel, if not better exactly, then at least like they were doing something. At times it almost felt like we were living in two separate worlds, side by side, but never touching.

We needed a way to bridge the gap between us. This came to us through much hard work and perserverance, but most importantly through lots of help. We never walked this path alone. Anyone who taught or cared for our children needed to be on the same page with their care or else ground would be lost. The single most important thing that we did was get them into the special needs program. There they were taught by teachers who had the experience and knowledge to teach the boys and us how to communicate with each other. We would never have been able to do this on our own.

Meltdowns will still occur, but once the children are able to communicate what the problem is, the meltdowns are much less frequent. We learned many other tools to help soothe and calm our boys, but I believe the communication was the most important part. Stay tuned for more details...

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.