One Thing After Another

Ever have one of those years where nothing seems to go right? I'm closing in on the end of a real humdinger.

As I have mentioned before, my youngest son, Zack is severely autistic. He's been in a specialized, self-contained classroom since he was about 6 and considering his delays and challenges, he has been doing pretty well over the years. In 2015, he moved from the multi-age classroom he'd been in for 5 years to a similar program at one of the local high schools.  There was nearly a year's worth of prep-work put into making sure that the transition went as smoothly as possible, involving a lot of visits from the new teacher to the old classroom so that he could meet and work with Zack and get advice from staff who was familiar, several day trips to the new classroom so that Zack could become familiar with it and lots of storyboard work to help Zack understand that when the new year started he'd be in the new classroom full-time. Even with all the prep-work, the transition was a challenge and for the first few months it seemed that every other day his dad and I would be asked to come help with some combative behavior or to advise them on how to deal with a meltdown, but by about mid- January, he had settled in pretty well and the calls had slowed to a trickle.

Then in May everything started going downhill fast when, with no warning at all, I received a phone call informing me that the school district had decided that Zack had to move to the other high school for the coming school year. I immediately lodged a complaint with the school district and started making a series of phone calls to the school board members, the superintendent and anyone else that I thought might be able to help me get the decision reversed. "There's no time to prepare him for the move!" I told them. "He can't handle that kind of disruption to his routine without a lot of prep-work! He's going to act out because he doesn't understand and someone will get hurt! Please, don't do this!" But I was ignored, or told that I was over reacting and that the staff at the other school could handle him. I dug out the storyboards we'd used to prepare him the year before and began working with him so that I could try to prepare him, but all the while I continued to plead with the district to change their minds or at least help me prepare him. My pleas were ignored- in part because they didn't even have a teacher for the new classroom yet, though, of course, they didn't tell me that until about two weeks before the school year was set to start when they finally hired someone. Then they invited Zack and I to come see the new school.

Alarm bells in my head, which had already been going strong for months now, managed to get even louder when we arrived at the school. We were met at the entrance by his new teacher- an older woman in her 60's who barely came up to Zack's shoulder- There was no way that this tiny woman could physically handle Zack if he became combative. She introduced herself to us and began to brag about how she knew how to handle kids like Zack because she had acted as a caregiver to another child with autism and the alarm bells rose a few more decibels, because anyone who has ever worked with multiple people on the autism spectrum knows that, while some things will carry over from one child to another, each one has it's own special challenges and knowing how to handle one only means you can handle that one. To assume otherwise is asking for trouble.

She ushered us into a conference room where the principal, vice principals, school psychiatrist, the school district's director of special services and the school's therapy team were waiting-  none of them had even considered that Zack would not really participate in this part of our visit and so there was nothing for him to do, so I pulled my phone out to let him play a game and the whole group suddenly realized their mistake. The next 20 minutes was spent with them all running in and out of the room trying to find an activity for Zack. When the teacher eventually came back with an iPad so that he could play games on a larger screen than my phone's, we finally started our meeting. They then proceeded to try to reassure me that they all knew what they were doing and Zack would adjust just fine. All I could think was, "you didn't even have enough foresight to realize he was going to need something to do for this meeting." I was also told during this meeting that since there was so little prep-time they were going to bring a para-educator from his old classroom to be his one on one so that there would be someone in the classroom that knew him, but they couldn't tell me who that would be because it hadn't been decided yet.

After this meeting which left me with even more doubts about this "plan", the teacher took Zack and I on tour of the school, and the alarm bells in my head were replaced by air raid sirens. First off, the school bus would be picking him up and dropping him off on the opposite side of the school, diagonal across the campus from his classroom, meaning that to get to and from his classroom, he was going to have to be escorted across the entire campus, through crowds of high school students who would not be even aware of how my sensory challenged son was being over-stimulated by the commotion. The classroom itself was a third the size of any that he had been in since preschool and had twice as many exits- big red flags for a kid with anxiety issues and a tendency to run when overwhelmed. The classroom was on the front corner of the school with one of the doors leading out to an open porch facing the busy road beyond the front parking lot and they had placed the desk with Zack's name on it right next to the door to the main hallway. As the teacher continued to share anecdotes about her previous autistic charge and inform me of things she intended to try to have Zack participate in, such as eating lunch in the busy cafeteria and participating in a general ed PE class, I reeled from the sheer number of red flag items that I was seeing. Had these people even looked at Zack's file? Were they unaware of the anxiety attacks he had the last time he was in such a small classroom where he ended up curled up in a corner, lashing out like a wounded animal whenever anyone got too close? Or the numerous times he had slipped out of other classrooms unnoticed, trying to get home, when he was overwhelmed by whatever was going on? Had they not read the reports of combative and disruptive behavior when he had been put in crowded gen ed classes on a trial basis in the past? Or the numerous times he had had to be kept out of assemblies or other high commotion situations because he went into meltdown before he ever even reached the area because of over-stimulation? How could anyone think this was a good setting for him?

But anytime I voiced a concern, I was simply told not to worry and the sirens got louder.

The next few months went from bad to worse. First off, the para that was supposed to follow him from the other classroom never appeared. The teacher that was so convinced that she could "handle" Zack was fired in the first month for grabbing and shaking another kid in frustration, and by mid-October, Zack's school behavior had deteriorated to the point that he was being brought home early in a police car more than he was being brought home on the bus.  By Halloween the school district was ready to admit that they had made a mistake moving him, but rather than move him back to the setting where he was doing well, they decided instead to send him to another school entirely. Fortunately this time, it was to a school that was actually equipped to work with him.  We met with staff from the new school the first week of November and adjusted his IEP to reflect the change and after seeing the much less crowded, locked campus facility and meeting the staff, I was totally on board with this new option.  I came home from the meeting more hopeful and relaxed than I had been in months.

And then it all came crashing down again. When I got home, there was a notice from the landlord on the door- due to the frequency of police vehicles visiting our home over the last few weeks, the landlord had decided that he would not be renewing our lease at the end of January and we were being informed that should we not be moved out by the 1st of February, he would begin eviction proceedings.

So, I began hunting for a new place to rent.  Unfortunately, if any of you have looked into renting in the Olympia, WA area lately, larger rental units (we need a 4 bedroom) are few and far between and when they do pop up they often get snatched up before I even notice that they've appeared on the market. It's now mid January, Zack, I'm proud to report, is settling in well to his new school and we are in the process of packing up, but we still don't have anywhere to move to. I feel like such a failure.

Anyone got a suggestion out there? Because I don't know what to do anymore.

The Importance of Routine

Since I did a piece on Scheduling, I thought I should also do something about routines which are closely related, but, in my opinion, are actually more important. Routines are one of those things that most people have but just don't think about. Sometimes their complicated, but most of the time they are simple. What's important though is the sense of security that they afford us. That sense of security is especially important to anyone who has limited control over their lives. This need for consistency and routine just gets more intense as the sense of control decreases. That's why when as adults we feel like the world is against us and we don't see any way that we can change that, we tend to fall back to old habits-  the habits are comfortable and familiar and give us a sense of consistency that is lacking in other areas of our lives at that point.  Habits can be good or bad, but, either way, they are established the same way- through routines that you repeat over and over again until they become automatic.

As parents routines are one of the most potent tools in our arsenals. They help us teach kids manners like saying please and thank you and healthy habits like brushing teeth and even things that seem instinctual like functional play with toys, but we often forget how helpful they can be in helping our kids cope with changes, prepare for a difficult task, or just relax and calm down when they are upset. And routines get even more important with a special needs child with physical limitations or developmental delays as their inability to participate in the same activities as siblings or peers can make them feel completely helpless.

I have, of course, used routines with my kids for as long as I can remember, but I was never as acutely aware of how helpful they could be until my youngest, who is diagnosed with severe Autism, sensory dysfunction and a seizure disorder, came along, mostly because he required so much more involved routines. T's need for structure and consistency is easily twice or more as intense as my other 3 kids. Breaking one of his routines can ruin his whole day, or in some cases his whole week. Just for example, every morning when he gets up, T likes to spend 15 min or so cuddling with me on the couch- it is a very simple but important part of his morning routine.

One morning about a year and a half ago, we had a brief power outage in the middle of the night and so, of course, when I awoke needing to use the bathroom the next morning, I went into instant panic mode when I glanced at my watch and realized that T's bus would be there to pick him up in 10 minutes!

I quickly threw some clothes on myself, asked one of the older kids to go warm up a hot pocket for T's breakfast and began rushing T through his routine-  go to the bathroom,  get dressed, brush hair and teeth, wash face- then I glanced at my watch again. 1 min left until we were supposed to be at the bus stop. I headed for the kitchen to grab the hot pocket that his sister had indeed prepared and turned hand it to T, but he had not come to the kitchen with me. He was sitting on the couch waiting for me. I grabbed his hand and said "Come on, son. Time to go."

T has a severe communication delay and barely speaks, but he immediately understood that I had no intention of sitting on the couch with him and you could see the panic on his little face. He grabbed my wrist with his free hand and pulled me toward the cushion next to him "'Mon!" ('C'mon), he said.
"No, it's time for your bus."
"NO!!!!!" Instant tears. He tried again to pull me to the couch as I reached my other hand down to gently pull his body toward the front door. I got him off the couch and he collapsed at my feet. He wrenched his hand out of mine, grabbed his ears and began to rock back and forth, now screaming in addition to the tears which were absolutely streaming down his face.

That melt down took hours to get under control, and although I did get him calmed down and taken to school, his whole day was completely unproductive- so much so that I got a phone call from his teacher (who never calls unless there is a REAL problem) asking if T had had a bad night or something.

Eventually, T will have to outgrow the need for that piece of his routine, but for now it remains an important piece of his morning.

While this example, may seem extreme, look at your own routine. How many of you read the newspaper in the morning? Have you ever tried skipping that and then spent the day thinking that you had forgotten something, but couldn't remember what it was?

Or maybe you had a loved one that lived with you pass away and you woke in the middle of night because in your dreams you realized that you hadn't hugged or kissed that person good night.

Routine is important to us all.

Summer Scheduling

I was reminded this morning of the minor debate over the importance of scheduling for kids during the summer. While this is a subject most parents tend to either ignore or overdo, I believe that it's an important one.

There are lots of reasons for the debate, but the main argument is "Is it really worth my time?" because quite frankly summer is when most of us look forward to not having to force a schedule on our kids. I totally understand this position, but life with my youngest son, who is severely autistic, has caused me to rethink my position.

Especially during the summer, I have found that maintaining a very basic schedule is important for many reasons, not only for my autistic son, but also for my other kids and myself. Keeping a couple of basic daily events the same even during the summer goes a long way toward making getting back to school in the fall much easier, however it's important to not overdo it. I am a firm believer in the idea that if you don't allow kids time to do their own thing your inviting trouble.

My kids have a very skeletal schedule for the summer that has regular times for getting up, eating meals, and going to bed and generally includes at least one other event each day which changes from day to day. Most days that event will be a trip to the swimming pool. Other days it might be a trip to the children's museum downtown, or a joint outing with their cousins to the zoo. Beyond these basic things, I leave their schedule open so that they can play with their friends, read, play video games, watch movies, or whatever else they come up with (within reason of course).

I started scheduling with my kids shortly after the youngest was diagnosed in 2007, and at first, I was in "Super-Mom" mode and completely overdid it. I had almost everything on the schedule- even my kids' playtime with each other was timed out- but it quickly became apparent that I was pushing things too hard. The older kids rebelled, the younger ones tantrummed and they all whined and I accomplished very little beyond stressing myself out and making everyone miserable.

Then I discussed it with a good friend, who also has special needs kids and she said, "Honey, it's best to use a light touch. You have to provide enough structure that you stay in control, but allow enough freedom to not overwork yourself or drive the kids crazy." So I started removing things from the schedule and just leaving blanks. It didn't take long to get the schedule cut down to just basics- get up, meals and bedtime- but I worried that not having anything else in there gave the youngest too little practice with scheduled transitions. That's when I settled on the idea of scheduling one other event during the day. One variable event provides opportunity for him to practice transitioning to something he doesn't necessarily want to do and to practice following directions, but because it's just one thing, it's also a lot less stressful to plan and allows plenty of free time for the kids.

Once I figured out this formula, I was shocked at how well it worked. Over the following years, not only has getting back to school routines in the fall been easier, but I have also noticed that there was an almost immediate drop in the amount of complaints of boredom from the older kids and the general crabby attitudes that used to be so common, especially toward the end of the summer- definitely another plus! The whole summer experience with the kids has become more relaxed and enjoyable.

I would recommend giving it a try, even if you don't have kid with special needs.