June is shaping up to be a busy month for me. Last weekend I participated in a Ford-sponsored Route 66 road trip and now I’m preparing for a family road trip to Yellowstone and Grand Teton National Parks. This will be our third trip to the region in 13 months but our first road trip.

My oldest is a bit nervous about an 11-hour drive on our first day. We will be leaving Phoenix early in the morning and spending the night in Salt Lake City, Utah. I explained that we will be stopping along the way including a visit to Hoover Dam, a trip down the Las Vegas Strip and then pit stops for stretching, food and of course potty breaks.

After an overnight stay in Salt Lake City, we will head up to Idaho to visit a drive-through wild animal park before heading over the Teton Pass to Teton Village, Wyoming. Teton Village is located just outside of the town of Jackson and it is smack dab in the middle of the beautiful Grand Teton National Park area.

We plan to hike and mountain bike in the region for two days before heading up into Yellowstone for three nights. In Yellowstone we will also hike and mountain bike. I’ve discovered that we can bike in part of the Upper Geyser Basin (which is the home of the world-famous Old Faithful geyser) as well as Biscuit Basin so I think we’ll manage to get some biking time in Yellowstone, as well.

I most likely won’t have time to update The Autism Education Site while I’m away next week but if you’re interested in following along on our family’s road trip, you can follow me on Instagram @melliaz or on Twitter @MommyMellie.

School is out for summer and when the 2013-2014 school year starts I will have a 7th grader and a 4th grader. This is the first summer since first grade that I’m not questioning the school setting that my son will be in for the coming year. Yes, for the past six years I’ve struggled with finding the right program for my son. He has high-functioning autism, PDD-NOS or Asperger’s depending on the clinician you talk to. To make it easy, I just say ‘he’s on the spectrum.’

So preschool, kindergarten and first grade were great, but I was driving him 25 minutes to a school in a different district. Sure, the drive was getting old but a mom’s gotta do what a mom’s gotta do. Well, he was diagnosed with complex partial epilepsy during the summer between first and second grades. I didn’t want him 25 minutes away so we moved him back to our ‘home school.’

He briefly attended this school in kindergarten but after a nightmarish encounter with a rude and condescending principal, I withdrew him from the school and he returned to the school he attended in preschool. I was nervous about returning for his 2nd grade year but believe it or not, it was his best year – no problems behavior-wise and he earned good grades.

The school, itself, was far from ideal. A student in this K-5 school brought a gun to school; not the kind of educational setting I want for my kids – autism or not. Plus, the district was cutting back financially and enrollment was shrinking and so I made a bold prediction – the district would close the school in the next few years because there is another, newer, school just a few miles away.

So, in third grade Alex attended the newer school. Ava started kindergarten there, as well. Alex was incessantly bullied at the school – both physically and emotionally. He had some great teachers, the school nurse was wonderful and the principal was involved and caring but some of the parents considered death threats a ‘boys will be boys’ thing. Whatever.

At the end of third grade we heard that the old school had indeed been scheduled to close, so his old classmates from second grade would be at his new school. Not only that, the districted also reconfigured the school to be a K-6 school and brought in a new principal. Ugh, my educational challenges were back. At this point, I was done with the district and Dave and I decided it was time to move to a new district.

This was two years ago – 2011 – as the housing market in the Phoenix metropolitan area was still struggling to bounce back from a big time crash. I count my blessings that we were in a position to make the move – not only am I in a district that I’ve envied from afar but the kids live just a few blocks away from their cousins and grandparents.

Alex’s first year in the district went OK – he had some behavioral issues but I expected that – he’d lived in our other house since he was 6 months old. Although I would have been fine with him returning for sixth grade, the school district launched a new program – an accelerated middle school program.

This program ended up being THE PERFECT PROGRAM for him. Yes, I had to capitalize that because this is the place Alex is supposed to be. The first year had between 30 and 34 students across sixth, seventh and eighth grades. The school is housed on a high school campus and the students have some amazing academic opportunities.

Next year it is expanding to 80 students across the three grades; that’s how successful the first year was. Alex bonded well with his classmates and for once wasn’t the victim of incessant bullying. Sure, he had some organizational challenges but what 11 year-old doesn’t?

After years of struggling to find the right school setting for Alex, and getting his full input all along, I’m so thankful that we found it. He’s been in a lot of schools over the years, and we even had a few months where I homeschooled him, but I couldn’t just sit by and watch the guy flounder. Now that he’s flourishing I know I made the right decision.

Have you faced challenges in finding the right school program for your child?

There has been a lot of news coverage of the little girl that wandered away in an instant and was found drowned in a nearby creek. This scares me to the center as my son is a wanderer. He gets distracted, and he’s gone. He has ADHD, and we have been informed that he will always have this tendency. We are fortunate in that he has a pretty good sense of danger and can tell people who he is and who we are, but it still terrifies me every time.

He has even gone so far as to hide and think it is funny. I think that is the only time I have ever spanked my child. Even though he is older, we never leave him alone at home, because we cannot guarantee that he will stay there, we have to set rules EVERY time we go out to a store, movie or anywhere, and remind him constantly whenever we are out. It is hard. When I was his age, I was responsible enough to care for my siblings and myself, now, with all the “bad guys” out there, it isn’t a question of whether or not he can be left alone. He can’t.

I have also worked with many children that run or wander away. It is difficult for teachers to keep track of all the kids, especially after school. A good friend of mine had her child “lost” for 2 hours before anyone noticed he was missing. He was supposed to go to an after school program, but decided to leave instead. He was finally found when he wandered into a hair salon and asked for a drink and they called the police. He was only 5.

My really good friend is regularly woken up by kind neighbors who have found her son out and about in the neighborhood. He can get past any lock, and is unable to tell people where he lives. He has just lived in the neighborhood long enough that they all know where he goes. Even my own niece has managed to get out the door and wander off to friends. My son and our foster child had a method where they would hold each other up to open the locks on the door. Safety locks slowed them down enough for me to catch them, but there is nothing that beats constant supervision, and yet, as our children age, we cannot always watch them; especially if we work, or have other children to care for.

My thoughts on this matter are two-fold. Aware.org has a program for families and first responders for children that wander. It is a great program, and I encourage every parent to be aware of the program and the key components.

Secondly, we cannot blame or punish the parents. The loss of a child is a grief beyond compare. To know that it was a matter of seconds that made the difference is even worse. We all know moments of frustration when we have to step away for our own sanity. There are also moments when we think our children are safely in bed, or playing with a sibling or friend, and we can finally relax. Being the mother of a special needs child is never easy. It is exhausting. They wake up at odd hours, my son sleepwalks. They are constantly in need of something, and our resources are stretched thin even on good days.

My heart goes out to the families of wanderers and the panic and stress that it causes. There are solutions – safety fencing, family helpers, emergency contingency plans, search and rescue dogs, and many others. However, no matter how many safety precautions we take, or how diligent and careful we are, we cannot protect our children all the time. Tragedy happens even with neurotypical children, how do we teach our children with their curiosity, and lack of understanding of certain situations to be careful?

I know I will be making sure my son knows how to swim, but we live in a desert and his greatest danger is that he crosses streets without even looking. I pray for his safety, as I believe in God, and I trust that whatever happens is His will, and that is small comfort during those terrifying moments when he cannot be found. My spouse is a firm believer in the power of community, and so I hope that we can form communities that will support and help each other. That will not point fingers or place blame, but will strive to create a safer world for all children. Hopefully someday my son will learn to at least tell me where he is going, but until then, my heart will continue to stop each time I can’t see him nearby, and I will have to have constant diligence. These events just make that responsibility even more real to me, and I hope I have the strength and fortitude to teach him safety and independence, because eventually I will have to let him go, and hope that he can handle life on his own.

Photo: Instant Vantage/Flickr

Over the past 6 ½ years I’ve talked to hundreds of other parents of children on the autism spectrum and one of the challenges that we all seem to have in common is sleep. Or, as Kristy Speer said in a guest post from January, ‘Autism and Sleep (or Rather the Lack Thereof).’ Yes, the lack thereof is the kicker.

My two children went from sleeping through the night at a few months of age to barely sleeping at a few years of age. Talk about a flip-flop! I guess that was my payback for those early brags, ‘Yeah, he sleeps through the night, it is great!’

When the sleep challenges began we consulted with the professionals and our occupational therapist suggested heavy work activities. This would help regulate their sensory systems and perhaps tire them out a bit. Well, their sensory systems were pretty well regulated but ‘tired’ was not an adjective that I could use to describe either of them just a few years ago.

With my pediatrician’s blessing, we tried melatonin. Holy moly, the kids slept. Not only did they sleep but they were happier and more engaged during the daytime. A happier and well-rested child is a child that is in a better position to learn, and learn they did. I know that there’s been quite a bit of controversy about medicating a child in order to get them to sleep but honestly, we didn’t give them melatonin out of convenience, it was definitely a matter of necessity.

Melatonin use in children on the autism spectrum was the focus of a 2008 study out of Vanderbilt University.

“Twenty-five percent of parents reported they no longer had sleep concerns after using melatonin, 60 percent of parents reported the sleep problems had improved, 13 percent still had major concerns and only 1 percent (one child) had worse symptoms.”

As I said in my 2008 blog post on the topic, “My son falls into the 60 percent of children who have seen an improvement in sleep. My daughter falls into the 25 percent of children who no longer have sleep issues.”

After some time on melatonin, it stopped working for my son. He also has epilepsy and so sleep is very important to keeping him seizure free. Since his sleep challenges were back, the doctor prescribed clonidine to help him fall and stay asleep. He’s been taking clonidine for about five years now. Hopefully one day he can stop taking it but for now, he finds that he can’t fall asleep without it.

Congratulations to Austin Baroudi, aka @Austieb7, you won the New Trent iPad case when you followed @MommyMellie on Twitter. I will be sending you an email to let you know that you won and I’ll also forward your contact information to New Trent so that they can get your prize sent out to you.

Thank you to Austin and everyone else that entered the contest!

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Photo: davidyuweb/Flickr

My son has been invited to his very first non-family sleepover. At age 11, many kids have already had sleepovers with their friends but my son has only stayed the night at my sister’s house and has only had his 12 year-old cousin stay the night at our house.

This Saturday, he will be staying the night at a friend’s house with a few classmates. While this may seem like a non-issue to most families, when you are dealing with autism (even high-functioning autism), epilepsy and medications, it is anything but a non-issue.

Alex is aware of his differences and for the most part he embraces them but every now and then he wishes he wasn’t different. Every day at the end of lunch he goes to the nurse for the afternoon dose of his epilepsy medication. His classmates know about it but he’s a little nervous about having to take medication at his friend’s house. I need to talk to his friend’s mom to see if she’s comfortable giving him his medication. If not, I can always stop by and say quickly say hi and give Alex his meds.

In addition to his epilepsy medication, Alex also takes medicine to help him sleep. Clonidine is commonly prescribed to children on the autism spectrum to help them sleep. However, I explained to Alex that at a ‘slumber party’ the last thing he may want to be is the kid slumbering deeply.

I explained about the slumber parties of my youth – hands in water, shaving cream on the hands and a tickle on the nose, etc. Essentially the first person that fell asleep was pranked. Now this may not have been nice but everyone in attendance knew that this would happen. If Alex is the first to fall asleep and he gets pranked, it is likely to ruin his entire evening.

When he takes clonidine to sleep, not only does he sleep deeply but he is very grouchy if he wakes up too soon. I’d hate for him to verbally accost his friends in a sleepy stupor. So, we’ve made the decision to skip the clonidine for the party. He may not get much sleep but how many kids really sleep well during a sleepover anyhow?

I admit, I’m nervous about the sleepover. I hope that he has a lot of fun and that this is the first of many sleepover invitations in his future. I just have to get over the hurdle of the first night over at a friend’s house.

Has your child with autism had a sleepover at a friend’s house? If so, how did it go?

I have a digital subscription to Sensory Focus and while all of the information is great, one of the articles in the April 2013 issue caught my eye – Self-Advocacy in SPD: Knowledge is Power by Jennifer McIlwee Myers. I am a big proponent of self-advocacy and my children have been involved in their IEP meetings since they were old enough to understand and provide valuable input.

In the article, Ms. Myers explains how her parents gave her two tools to help keep her sensory processing disorder at a manageable level.

“First, my parents taught me that I could change situations, and they helped me learn how to do it. It is all too easy to overprotect a child who has SPD and Asperger’s syndrome, and even though neither of those things had a name when I was growing up, y mom noticed early that I tended to hide behind adults and try to get them to handle problems for me. My folks weren’t having any of that.”

As a mom, this is something I battle daily. I want to be there for my children, specifically my son as he goes through some struggles with school, but I also want to make sure he has the tools he needs to make his own choices and take his own actions. Helicopter parenting is an easy thing to do when your child is on the autism spectrum but as in parenting a neurotypical child, it can be as harmful as it can be helpful.

The second thing her parents taught her is that knowledge is power. Myers explains, “When I first received a diagnosis of Asperger’s syndrome, I picked up some books that had sections on SPD. I started reading about how sensory problems could make normal experiences difficult and what those sensory problems look like.”

Knowledge is, indeed, power and that is why my husband and I made the decision to tell our children about their differences when we felt they were at a level they could understand. I know not all parents that have children with high-function autism and/or sensory processing disorder make the same choice but for us, it was important that our children be involved in all aspects of their care and treatment. If they weren’t aware that there was a name for these differences, it would be difficult to have them involved. I didn’t think we’d be able to bring them into IEP and other meetings while having to dance around the A-word.

A big thank you to Ms. Myers for sharing her experiences, as a mom it helps me better understand what my children go through when they are experiencing sensory overload.

For more information, check out the Sensory World website to subscribe to Sensory Focus magazine. If you subscribe, enter discount code MHO to save 15% off of your subscription fee.

I’ve just made a round of updates to my autism school list including my first schools in Nevada, Oklahoma, South Carolina and Washington State. The following new schools have been added:

Journey Learning Center
2100 W. Northwest Highway, Suite 202
Grapevine, Texas 76051
Phone: (817) 416-9797

Montcalm School for Boys and Girls
13725 Starr Commonwealth Road
Albion, Michigan 49224
Phone: (866) 244-4321
Phone: (517) 630-2512

Excel Academy
116 West Church Street
Newark, Ohio 43055
Phone: (740) 323-1102
Fax: (740) 349-5834

The Auburn School – Baltimore Campus
1710 Dulaney Valley Road
Lutherville, Maryland 21093
Phone: (410) 321-4799
Fax: (410) 321-4557

The Auburn School – Silver Spring Campus
9545 Georgia Avenue
Silver Spring, Maryland 20910
Phone: (301) 588-8048
Fax: (301) 588-8045

The Auburn School – Herndon Campus
13525 Dulles Technology Drive Suite 101
Herndon, Virginia 20171
Phone: (703) 793-9353
Fax: (703) 793-9355

The Empower School
1825 Fortview Road Suite 105
Austin, Texas 78704
Phone: (512) 351-7837

Good Shepherd Catholic School at Mercy
13404 North Meridian Avenue
Oklahoma City, Oklahoma 73120
Phone: (405) 752-2264

Capable Kids
2728 Holland-Sylvania Road
Toledo, Ohio 43615
Phone: (419) 346-8269

Promedica’s Autism Early Learning Program
2040 W Central Ave
Toledo, Ohio 43606
Phone: (419) 291-7080

Mercy’s Autism Center
3521 Briarfield Blvd
Maumee, Ohio 43537
Phone: (419) 794-7259

Charleston Autism Academy
480 Jessen Lane
Wando, South Carolina
Phone: (843) 881-0330

The Autism Academy of South Carolina
2243 Percival Road
Columbia, South Carolina
Phone: (803) 790-7997

Brock’s Academy
17913 145th PL N.E.
Woodinville, Washington 98072
Phone: (425) 483-1353

Talisman Academy
2075 N. Rugby Road
Hendersonville, North Carolina 28791
Phone: (888) 458-8226

Autism Academy for Education and Development
Address: 1540 N. Burk Street
Gilbert, Arizona 85234
Phone: (480) 240-9255
Fax: (480) 718-8518

Building Blocks Center for Children with Autism
175 Deer Run Road
Danville, Virginia 24540
Phone: (434) 797-5531

Bridgeway House
3575 Donald Street
Eugene, Oregon 97405
Phone: (541) 345-0805

Newton Learning Center Northern Nevada
700 Greenbrae Drive
Sparks, Nevada
Phone: (775) 358-0808
Fax: (866) 261-2628

I’m hosting another New Trent contest, this time for the New Trent Arcadia Airbender iPad Keyboard Case. I purchased my first iPad the day the original version was released in 2010 and over the last three years I have tried several different keyboard cases. I’ve also tried to use an external Bluetooth keyboard with the iPad but nothing that I’ve tried worked as well as the Arcadia. I’m not just saying this because I’m hosting the contest, though, I am completely serious. I still have the Arcadia Airbender case on my iPad even though I’ve had more than enough time to test it for review purposes.

On a recent morning I found myself in the parent drop off line at my daughter’s school about 25 minutes before the bell was set to ring. I had to drop my son off at school early so instead of driving back home, waiting for 5 minutes, and taking my daughter to school we went a bit early. She sat in the backseat and read a book while I sat in the front seat and wrote an article. I’ve never had a more productive day in the parent drop off line.

Here’s a bit of the review I posted on Amazon.com in April after I’d had a few weeks to test the product, which works on all second generation or newer iPads:

Putting the clamshell case on my third generation iPad was simple. The Airbender isn’t a single-piece unit and that, alone, made it easier to install. After charging the device, it was time to test out the keyboard.

I am particular about the feel of the keyboards that I use and the Airbender did not disappoint. The keys aren’t overly spongy, which is a problem I’ve had with other iPad keyboard cases. Each key clicked nicely and the size and spacing was nice.

In addition to the standard keyboard keys, the Airbender also includes a variety of shortcut keys that I’ve never seen on other keyboard cases I’ve purchased. Shortcuts include brightness keys, volume controls, an auto-lock key, photos and more.

If I hadn’t been won over by the keyboard, then the fact that the shell is actually a three-piece product would have won me over. The keyboard detaches from the iPad; when you keep the swivel base attached to the iPad you can set your tablet up like a traditional desktop computer system.

The contest ends on May 28, 2013 at 12:00 am and one lucky U.S.-based winner will receive a New Trent Arcadia Airbender. Enter by filling out the appropriate items in the Rafflecopter Giveaway widget below.

If you’re not in the market for an iPad case, check out New Trent’s special offers on other tech gadgets or visit the New Trent website.

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