Extended School Year and Summer Programs

Here we are in July and now that everyone is on summer break we have a whole new host of issues to face.  Within my own family it means getting used to adjusting schedules, which never goes well. Trying to adapt to the summer extended school year, and programs to keep the kids busy and me sane.  For those of you that didn’t get extended school year for your special needs child – don’t be jealous.  All my daughter will be receiving through the school system is a thirty minute social skills group once a week.  That’s right – 30 minutes! Really, what is the point?

This means that I have to fight to get her dressed and fed then get all three of my kids out to the bus stop.  So my daughter can be driven around town for a half an hour to finally get to school for a thirty minute group session.  Then she has be driven back home on the bus, at which point she will thrash and scream at me because she will be mad that they didn’t give her an opportunity to play on the playground.

I probably wouldn’t be so frustrated and would be more appreciative of the 30 minute group if I was told about it before I went out of my way to sign her and her sister up for ballet and gymnastics (per their request). You see the school system “asks” you if the extended program will work for you and I could say no but then they get the opportunity to say I refused services for my daughter. I won’t let that happen. “Monday for 30 minutes? Oh yes, Monday is great.” I reply when they tell me they are going to “offer” a social skills group to my daughter.  I don’t bother telling them that now my children will now be forced to miss half of the programs that they were signed up for this summer. I save my breath and try to explain to my husband why I smiled and accepted the “offer.” He is confused. “But you said yes? You seemed pleased that she will get something? Why don’t you ask for another day that works for us? he unknowingly says to me. “Oh dear, let me explain something to you, the special education system doesn’t revolve around us and our plans. It is a strictly ‘take it or leave it’ option. If I don’t “take it” there will be huge consequences. (ie. Mom refused services therefore we don’t need to offer them anymore.)

The team of professionals that have no idea what it is like to be a mom of a special needs child, has no idea that I have spent hours searching for a town with a Park and Recreation Department that will “accept” my daughter. Based on her age and her high-functioning, she doesn’t qualify for any special needs camps or summer programs through the local ARC. However, I often find I can’t send her to a regular camp because they are not knowledgeable about sensory needs and I fear what they would do with her if a meltdown ensued.

Instead, I signed her and her sister up for thirty minute classes of ballet and gymnastics at a neighboring town, at which I have to stay for the duration of the class with my screaming nonverbal son in tow and closely watch for any inkling of a meltdown. Last year I was lucky to get her into the ballet class and she made it three quarters of the summer through before melting down and not wanting to go back.

This years first class didn't go well. I arrived ten minutes early so I could change my son and give the girls a few minutes to run off some energy before having to be calm and listen.  Everything was going smoothly until someone had to pee and the building was locked.  The teacher showed up a minute before class was supposed to start to unlock the door.  This gave my daughter just enough time to get in the bathroom door before her bladder had enough. So I spent the first 20 minutes of class mopping the floor and washing up my child. Then the rest of the class was spent convincing my daughter to participate. She kept roaming the perimeter of the class or walking out of it. I fear that I have wasted my money since I had to pay for the entire summer up front.

Anyway, after talking to my friends, I realized that my daughter wasn't the only one left out of programs. There is hardly anything in town for ages 1-5. There isn't much for parents that have more than one child because most groups require you help your child which leaves the other unattended.  There isn't anything for high-functioning kids on the spectrum.  So I decided to start a new group, where no one will be left out.  (What can I say, if I see a need, I feel obligated to fill it.) I'm going to call it Activities 4 All Abilities.  It will provide an art class from 10-10:45am. Then, 11:00-11:45 will be a sensory fun/movement class.  While the class is going on, my husband has been gracious enough to mind siblings or participants that aren't quite sure that they want to participate. Parents still need to stay to help but at least their will be extra hands. I am only charging $3 per class to cover the cost of juice boxes, snacks, and art supplies. I hope it goes well. At least if my daughters decide to roam out of class I know where they will be.

My Other Blog

Until I get this blog fully up and running, I wanted to let you know that my old blog is http://tlrofct.blogspot.com/  It has a lot of great links and resources for special education and autism.

Leslie and the Terrible, Horrible, No Good, Very Bad Day

Leslie and the Terrible, Horrible, No Good Very Bad Day

When I was young, there was one book that I adored more than most – Alexander and the Terrible, Horrible, No Good Very Bad Day by Judith Viorst.  Alexander wakes up with gum in his hair and trips on his skateboard.  Later in the book the shoe store doesn’t have the “cool shoes” in his size so he gets plain ones. The story goes on with a bunch of small things adding up to cause Alexander to want to move to Australia.

Today, I feel like moving to Australia. I feel like Alexander does. I just want to up and move away where I can’t be bothered. 

So what happened? Well twice in the past week I have had two different family members visit from out-of-state and tell me that they plan on visiting on said day.  So I frantically clean my house and try to maintain a clean house with three kids under the age of 6, while running a magazine, planning two birthday parties, and starting a new organization. You know because I have nothing to do. (Do not get me wrong, I am not complaining about my busy schedule. I love my busy schedule. I thrive when busy but if I rearrange my schedule for you – I expect you to be there.)

You see, most of the world sees me as a writer, a public speaker and the Editor of a magazine – but my family sees me as “Just Leslie.”  This does not offend me. It just is. In fact it keeps me in check.  It reminds me of how far I have come and how hard I have worked.

Anyway, I love visits. I love family and friends. However, many do not seem to be aware of the monkey wrench that they throw into our lives when they want to “just drop in.”  When I was single this was great. I just went with the flow of whatever life brought me.  This is not the case anymore.  My hubby and my kids thrive on structure and go into panic mode when plans change. 

So when someone tells me, “Hey, I’m in state and want to stop by tomorrow after lunch.”  I expect them to be here sometime between noon and 5 pm.  However, twice I have been told that they are going to “swing by” for a visit and twice these two different people didn’t show at all.  To me this is just downright rude.  In todays’ day and age where almost everyone has a phone with a clock on it attached to them, there is no reason why you can’t call and cancel and no reason why you can’t keep track of the time. 

The other aggravating factor for me is that they let my kids down. If I start frantically cleaning, they know someone is coming over. There is no hiding it. They are young but clever. So even if I try to hide that so-and-so is going to be visiting it eventually comes out.  So twice I have had to deal with my kids crying because we stayed home all day long and they didn’t show.

Then – “Can I stop by another time?” Well, what is another time?  Believe it or not I don’t sit around twiddling my thumbs waiting for people to just “stop by.” 

It drives me insane when people only think of themselves. In this case, in both cases, they were working their visit around what worked for them and their vacationing activities.  Really?!! I don’t have three young kids to worry about, which means nap times and bus schedules to take into consideration.  Oh and there is the whole autism factor. My five year old has Asperger’s and my baby boy is not diagnosed with anything yet but I have my concerns.  They depend on the plan for the day and when the plan doesn’t go accordingly then we have major meltdowns.  My middle child is an NT and is overtly emotional.  So she cries from missing the person and the disappointment of waiting all day to give them the picture she drew only to find out they aren’t coming.  Me, well, I am offended that I don’t rank high enough on their Richter scale for them to keep their plans with me and pissed off that they made my kids cry.

This is why, after dealing with the kids crying, I agree with Alexander and think I should just move to Australia.

Wholeness and Completion Issues

If your child or a student that you teach, seems defiant or like they "just won't listen," then you need to read this blog post.

When my daughter, (who has Asperger's Syndrome), was a toddler I had concerns that she was deaf at times because of the way she would ignore me when her name was called.

Me: "Mary."

Me: "Mary."

Me: "MARY."

Me: "MARYYY."

Me: "MARRRRRRYYYYYYYYY!"

Mary: "What." {Expressionless, without even looking up}

 

So I did what any concerned parent would do, I talked to her pediatrician who scheduled a hearing test at CCMC (CT Children's Medical Center). Her hearing was perfect.

Completion Issues and Routines

I have learned very much from my daughter. Even after years of being an educator, it amazes me the information that I have yet to learn.

As soon as Mary was able to walk, (which in her case wasn't until 2 and half or a little later), I noticed that she would shut every door that was open. It drove me crazy because I was worried that she would smash her little fingers. I was unaware that what she saw was something "incomplete." In her eyes, that door HAD to be shut. This was perhaps the first completion issue that Mary presented.

 

Mary has the ability to envision entire scenarios before they happen. Also, until she plays out the entire scenario, she has the innate ability to focus so intently that she can tune everything else out. This is sometimes not just an envisioned scenario but can also be an action that she is accustomed to doing. In either case, you cannot interrupt! Saying or screaming her name will not stop her, and if you physically try to stop her from completing the action or scenario then a major melt down will occur. This is normal for children with sensory issues and autistics. It is commonly referred to as a "completion issue." To many people with autism, things have a distinct shape. A ball is a circle (to a child) or a sphere (to an adult). When this shape is altered it creates a certain amount of anxiety and/or discomfort because the image that they are used to is dissimilar. Any change, be it change of plans or a change in imagery is unsettling to a child with autism. Just like a change in scientific materials will undoubtedly bring about a different concluding result in an experiment, so will a change in plans or imagery bring about a different emotional response in an autistic person.

 

Routines are extremely important to a person with Asperger's Syndrome. For Mary, part of her weekday routine is walking down the sidewalk to her bus stop. Day after day, I would try to stop her before the end of the sidewalk to keep her away from the road as a safety precaution. Her defiance continued to grow. Instead of walking out with me, she would bolt out the front door in hopes of completing her path to the school bus before I could prevent her from finishing. However, I was unaware that what she was doing wasn't defiance. It was her "completion issue."

To Mary, she had a path and a routine that must be completed before her bus got there. If she didn't complete her path then who knew what would happen next. Autistics need a routine for comfort, safety and security. With all of their sensory issues, they often feel like they don't have much control over their daily lives, which is quite aggravating.

So try to become creatures of habit. I'm not saying set a schedule every day and stick to it, because life changes. However, you can give your kid a great sense of security by creating some routines throughout the day. Trust me; it relieves a lot of anxiety and behavioral outbursts. I will admit that when someone told me to make a picture schedule for Mary at home, I didn't want to even consider it. I admit that schedules are imperative to achieve peace and tranquility, but I also encourage "wiggle room." For instance, have "open play time" (kids can play anything alone or with someone) or "out-of-the-house time," (which can be going to the grocery store or going to the park). At first, I thought I had to plan every second of everyday, which to me is just not practical. Life changes and I want my daughter to know that.

 

So what I have done, that works for us is to have a "wake up routine," and a "bedtime routine."

Our WAKE-UP ROUTINE

For my family, the kids wake me up at 5:30 almost every day.  I tell the girls to go use the bathroom and get dressed. While they get dressed, I change the baby's diaper and get him dressed for the day. When I am done changing the baby, I go into the girls' room and check to make sure that their clothes match and that the clothes they chose are appropriate for the weather. Then I tell them to brush their teeth. Once teeth are brushed and clothes are approved they are let downstairs. (I have gated the top of my stairs.)

When we get downstairs, Mary has a cup of warm chocolate milk and watches one kid-approved show from our Netflix Instant Queue. Meanwhile, I set up the coffee maker and feed the baby. After the baby is fed, mommy has her coffee and watches the news while the girls eat breakfast. Then we have what Mary has come to call "open play time." The girls can play what they want. Around, ten in the morning I pull out the crafts and do something crafty with them. It can be something as simple as folding a piece of construction paper and letting them use my stamps to make a card for someone; playing with play dough or floam; or something more constructive and planned like the cookie monster foam crafts that we made this morning. At eleven my cell phone alarm goes off to remind us to clean up our craft and make room for lunch. I make lunch. We eat. Get shoes on and begin the battle to brush hair. So we can make it outside by 12:20 to stand at the edge of the road to wait for the bus.

After school, she has a snack and has "open play." At 4:30 my cell phone alarm goes off again to remind me to start making dinner if I haven't started yet. So if the girls are playing outside they know that they have to come inside, while mommy cooks. We eat dinner between 5:30 and 6. Then, bath time, a Backyardigans episode, brush teeth, use potty, read one story, tuck in the girls, lights out then say prayers, and then I sing a certain order of lullabies until they are both asleep.

 

I highly recommend timers. There is no arguing with the timer. It is concrete. It has helped in so many ways. We even use the microwave timer if one of the girls wants a turn with what the other sibling has. If you don't have a timer on your, stove, your microwave or your cell phone - buy one. You'll thank me later. I have become used to my cell phone since it is always on me if I'm at home, at work, at the park, etc. It is my built in timer.

 

Whole and Half

Most, if not all autistics, have aversions to food. In other words, they are extremely picky eaters usually because of their sensory issues. However, you can help alleviate some of the food tantrums by understanding this next issue.

 

One of the worldwide habits that parents do for their young children is cut their food. Why? To avoid choking. It is just a natural occurrence at any dinner table to see a parent cutting a kid's dinner up for them.

However, cutting up food to some kids with autism creates a problem. For instance, cutting a strawberry in half can be disturbing because the fruit is incomplete. So now the child is not only struggling with the temperature of the strawberry (was it refrigerated or room temperature) and the texture (all those tiny little seeds), but now they have to deal with the food not being whole. This of course leads back to completion issues. They have an image of what a strawberry should look like and you have altered that image. This provokes anxiety and frustration.

In no way, am I suggesting that you stop cutting your child's food. However, if they are old enough and have a full set of teeth, you might want to consider it.

 

In conclusion, there is light at the end of the tunnel. This completion issue has many benefits. For instance, Mary knows that she cannot step into the street until the bus door is open. Once I learned about completion issues, I was amazed to learn that Mary could run full speed up the sidewalk but she would stop dead in her tracks when she got to the edge of the road. Why? Because the path was complete and she couldn't move until the next task, which is waiting for the bus driver to open her door. My neighbor asked my one day, "Aren't you scared that she'll run into the road?" I confidently smiled and said, "I know she won't." She said, "How can you be so certain?" I said, "Because that would break the routine. She has programmed herself to know that she takes 6 steps out the front door, twelve to the left and fifteen straight and she can't move until the bus door is open." Mary has never once, stepped into the road until that bus door is open. Oh, and in case I haven’t mentioned it - every autistic person is differently affected. I am just trying to shed some light on the issues that I have seen and lived first hand so that other parents and educators might be able to understand why an outburst or meltdown occurred and possibly prevent one next time.