autism oz

Finally! An Autism Magazine FOR Parents BY Parents – autism Oz

I’m so proud to be a part of this fantastic new resource, a monthly digital autism support magazine known as autism Oz.

It was given the name because the magazine is produced in Australia (Oz) but aimed at the global autism community.

They have a fantastic team of contributors (including me *wink*) who are highly respected scientists, therapists, nutritionists and parents living autism’s day-to-day experiences. These contributors bring the latest and most innovative news, views and tried and tested advice from across the autism spectrum.

autism Oz uses the Internet’s interactive ability to create magazines that come alive and serve the community. In addition to written content, videos can be played straight from the pages of the publication.

What drew me to this project was that families are be able to connect from all over the world and share their own stories and video of struggle and success. Much like Spirit of Autism, the messages are REAL, uplifting and authentic.

I was introduced to the Editor, Iain Croft through LinkedIn. He’s a former journalist with the BBC in London, where he worked for 23 years. He was Assistant Editor at Hardtalk on World TV, Planning Editor at World Service Radio News Programmes, and Assistant Editor at the BBC’s most influential news and current affairs program called “The Today Programme”.

Now living in Perth Australia, Iain is a parent of three wonderful children Riley (sadly deceased), Isabella who is six and Rafael, five.

It is because of what happened to his son that he has now put his energy into child welfare and helping parents assist children reach their full potential. This was his inspiration for birthing this major project aimed at people with autism and their carers.

I’m honored to be a contributor to autism Oz iMagazine. You can find my article on why I train Emergency Responders and Autism Safety at home in the April issue. Once I got to know Iain and his driving force to help the community, I immediately volunteered to create and manage the magazine’s website.

autism Oz is more than a project, it is a global movement. It goes beyond autism awareness; it is autism in action. Whether you are just starting out on your autism journey or if you are a seasoned professional, autism Oz is with you every step of the way.

autism internet safety

My Son Was Hacked! Let’s Talk Autism and Internet Safety

A few mornings ago, my son knocked on the bathroom door to excitedly tell me he was chatting with “Him”. Naturally the next words out of my mouth were, “Who’s THAT?!”

He explained that he was just surfing the web and a random chat window popped up, not associated with any instant messaging or gaming program. He told me the person’s name was “Him” and that he had a funny whisper voice.

Of course I immediately wanted to know what things my son said to “Him” – did he tell him his real name, where we live, how old he is? We have been over many, many social stories regarding Internet safety myriad times.

Justin started crying, revealing that he told the mysterious chat guy that he was 10, which broke one of our family rules. I comforted him (amazed at his reaction to a broken rule – this is HUGE and NEW!!) but also dug further into the situation. Three things that “Him” said really alerted me:

“Don’t be scared”

“I can hear you speaking”

“How old are you?”

The chat window disappeared, and I told Justin to take a screenshot and send it to me if it popped up again. In the meantime we searched his computer for programs that didn’t seem to belong but I could find nothing. (I’m a Mac person… didn’t really know what to look for but hoped it would be obvious!)

That afternoon when I came home, Justin told me that “Him” opened a new chat window and tried to engage him in conversation. When my son wouldn’t comply the creep opened my son’s CD drive! Wha? He had remote access? The next thing you know he hid the task bar and all my son’s desktop icons.

I had him shut down immediately.

Luckily, the dog and pony show of hiding icons and opening a CD drive was the worst activity that we saw. “Him” could have locked up my son’s computer, changed passwords, or worse – turned on his webcam and watched! Ironically, it was my son that found a Remote Access Permission setting in the Control Panel and disabled it. We believe that stopped “Him”.

However, with all the items Justin downloads on a regular basis, this (or worse!) could happen again.

So how do you protect a child that figured out how to write custom code and change online video games, film his screen while walking through his tutorial process and post how-to videos on YouTube by himself?

The FBI website has some great general Internet Safety Tips for Kids. To simplify for children with Autism, I created this:

 

How about you? What safety tools do you have in place for your children? Share by commenting below or posting to the SOA Facebook page!

autistic adults workplace

Guest Post: Autistic Adults in the Workplace

More autistic adults are entering the workforce than ever before and with it the number of resources benefiting both employees as well as employers is growing. Not only are these autistic adults entering the workforce, they are are thriving, and this may be a direct result of the growing network of support for those with autism. With growing awareness of the different types of autism and more advice it has never been easier to be an autistic adult in the workplace.

  • What Kind of Autism? – The first thing you need to know is that autism is known as a ‘Spectrum Disorder’, meaning that autism can range from high functioning to severe. Sometimes it can be difficult to pinpoint as symptoms aren’t necessarily the same even with the same diagnosis, so it’s always best to have an open flow of communication between employer and employee so that both parties understand the specifics and the best way to handle them. Different skills and abilities will affect how they integrate into the workplace. If communication or social capabilities aren’t strong, autistic adults may prefer a quiet working environment rather than a busy office; some may not mind working with others but may have difficulties with changes and disruptions.
  • What Challenges are Commonly Faced? – While entering the workforce can be a challenge for everyone, for autistic adults they face a tough transition due to communication and social struggles. More common problems faced by autistic adults include:
  1. Difficulties adjusting to the working environment, especially if the workplace isn’t used to the needs of those with autism.
  2. Misunderstanding the emotions of others and responding in an inappropriate manner.
  3. Difficulties understanding instruction and changes in the routine.
  4. Behaviors that are obsessive or repetitive could disrupt the balance of the working environment, especially amongst other co-workers who aren’t used to or sensitive to the needs of those with autism.
  5. Processing sensory matter can sometimes interfere with work performance.

Fortunately, both employees with autism and their co-workers can overcome all of the challenges they may face through training. By researching training programs and support groups, employers can create a working environment of equals. Autistic adults can also look to improve their skills for a working environment the same way. It’s all about working together to create a professional and supportive working environment.

Thriving in the Job – With the right support and facilities autistic adults can thrive in their employment. There are many autism support organizations out there to help autistic adults find appropriate work placements as well as sourcing employers whom understand their needs. It’s important for those with autism to work in an environment where they are not discriminated and that meets their needs and capabilities; so it might be worth considering for an autistic employee to continue in a job skills support program while they are employed, to work out any communication or socialization issues.

This article was written by A. Elliott; a writer with an interest in autism awareness. She occasionally writes for Voyage Care, providers of autism care and supported living.

autism potty training

Autism, Sensory Processing Issues and Potty Regression

This is not a fun topic for me to discuss, but I’m hoping that together we can help each other. If you are experiencing anything like this at home, regardless of your child’s age, you have my utmost empathy and understanding.

My son had delays in potty training, which is certainly not uncommon for a child with Autism and Sensory Processing Disorder. Truth be told, I have less detailed memories of those days as a single parent with chronic sleep deprivation, but we got through it.  Not that my situation has changed, but things seem a bit more manageable with older children! Or maybe I’ve just matured :)

He’s never been able to “take care of the paperwork” on his own, and that is challenging enough because I’m not here 24/7 to tend to his bottom. He has been known to hold it until I’m home from work, which creates some issues with the routine ebb and flow of daily potty experiences. Additionally, his diet is not 100% gluten free and he has never had a pleasant bathroom experience. The other part of the equation is due to his sensory processing disorder: he is unable to feel the sensation of having to go until it is absolutely the last second before an emergency. We have been working on this diligently for years with exceptional progress.

Until recently.

Justin will be 11 this month. About three months ago I noticed that he stopped going. Every few days I would find soiled boxer briefs in his closet or under his bed. Ruh-roh.

I immediately bought hygiene social stories, made it ABSOLUTELY clear that I was not mad at him and he would not be in trouble, and encouraged him to try using the bathroom on a regular schedule with visual supports.

It worked for a little while, and then things took a turn for the worse. He hadn’t gone for about a week and I made him sit down and try before I went to work one morning. When he was done I saw blood. A frightening amount of it.

Luckily, we ruled out the really scary stuff at the hospital and discovered it was due to impacting. More talks, more social stories, more diet adjustments… I thought it scared him into being more diligent with his potty experience. He has made it clear that not being able to clean himself embarrasses him, so I believed he had the capability and awareness to make certain choices regarding the bathroom.

Still he is regressing. Now he goes in his boxers and cleaning him up has become a physical issue. He is bigger than me. I am very careful to avoid attaching negative emotions to this experience and always try to be 150% supportive, but it is harrowing.

Why he is afraid to go

I believe that sensory issues are still playing a role, but there has to be other stuff going on to foster this behavior. His diet can always be improved. I’ve read that fear could stem from leaving a part of himself behind. And of course, overall it’s a long and painful experience for him.

For a child that can’t stand a speck of dirt on his hands, it bewilders me that he can sit in soiled and pungent undies with no issues. I won’t even tell you the details on how I had to sanitize his room. ACK.

Solutions

You know me, I always have to have a plan of action when faced with a challenge! We’ve luckily ruled out medical concerns and reasons. I thought about buying adult diapers, but I feel like that would make it okay for him to keep doing this. So here is what we plan to try:

  • More social stories
  • Positive reinforcement
  • An interval timer where he will try at set times to get him used to the routine again
  • Continued tweaks to his diet
  • More movement, including yoga
  • Natural stool softener, such as flaxseed oil

I will keep you posted! What about you? Have you experienced this at home with your child (no matter what age)? What worked for you? Did anything make it worse? Share your stories by commenting below!

autism and exercise

Guest Post: Autism and Exercise

Autism is a developmental disorder of the mind, but it has a profound impact on the body as well. Children with autism can have trouble with motor function, poor coordination, myoclonal jerks, abnormal gait and posture, and sometimes difficulty sitting, lying, crawling, or walking.

Autism is incredibly complex and still largely mysterious, and treatments can require a multitude of medical and behavioral interventions, from medications and educational therapies to behavioral therapies and communication therapies. But there’s another piece of the puzzle, one that can help not only with some of the physical symptoms but with behavioral problems and quality of life in general: exercise.

Why Exercise Matters in Autism

Physical activity is important for all children, regardless of their health, but it’s especially important for autistic kids. They have higher rates of obesity than other children, for one thing, and that puts them at risk for other health conditions, from diabetes to depression. And those illnesses will only further aggravate the underlying symptoms of the autism.

Physical fitness improves general motor functioning. Studies have shown that regular exercise can lead to improvements in balance, strength, agility, speed, endurance and flexibility. It also has been shown to significantly reduce negative, repetitive behaviors such as body rocking, head nodding, object tapping, and spinning. And exercise may have an effect in reducing self-injurious or aggressive behavior.

Finally, regular exercise gives autistic children some of the positive social interaction they find difficult to maintain in their daily lives. This is particularly true of children who are able to participate in team sports, but it’s also true of children who require solitude, as there still may be interaction with coaches or therapists. Above all, autistic children who exercise are able to build self esteem and self confidence that may help them manage their symptoms and communicate more easily.

Finding the Right Approach

So what’s the right exercise regimen for your autistic child? Well, that depends. It depends on your child; their symptoms and behaviors as well as strengths and deficits. Most of all, it depends on what your child enjoys!

Whether it’s team sports or one-on-one yoga, don’t rule anything out right away. Some sports, like hockey, may seem too dangerous or too involved or too social, but that doesn’t mean they are. There are hockey teams in the United States made up entirely of developmentally disabled children.

Combine Exercise, Academics and Social Skills

Whatever type of athletics you choose, do what you can to integrate it into your child’s academic and social skills studies. Follow your child’s exercise regimen or team sport with a study period, and follow that by a social skills period. Make sure the various teachers and therapists are in contact with each other. Integrating social, academic and physical activities will help minimize your child’s cognitive and sensory symptoms.

If your child is up for a team sport, either find one that has other developmentally disabled players or place him or her on a team with players a couple of years younger. A “shadow” can help bring your child onto the team socially and athletically.

Even if your child isn’t ready for a team sport, he or she can still learn some of the basics – making a goal, catching a ball, throwing into hoop. That way, if the time comes, he or she can join in a game after school or sign up for a team.

Valerie Johnston is a health and fitness writer located in East Texas. With ambitions of one day running a marathon, writing for Healthline.com ensures she keeps up-to-date on all of the latest health and fitness news.

resolutions or reboot

Resolutions or Reboot?

When my son is in his room either playing, building or watching role playing games on his laptop, I will sometimes hear frustrated screams and banging against the keyboard from behind his door. Fearing the thought of having to purchase another laptop (yes – it’s happened!) coupled with not wanting my child to dwell in stressful emotions I will usually run in and see what is causing the outbursts. It’s always the same issue: the computer is lagging!

What is the first thing I ask him when this happens? “Did you reboot?”

99% of the time a simple reboot fixes the issue he’s experiencing.

That got me thinking… in what way is my life “lagging” right now? (oh let me count the ways!)

Do I really want another list of resolutions to meet? Truth be told, all my resolutions have been on a list throughout all of 2012; some even longer! Guess what? Many weren’t accomplished. Do I honestly think that the changing of a calendar is going to make these resolutions and goals magically manifest? Really?

“We can’t solve problems by using the same kind of thinking we used when we created them.” Albert Einstein

“Insanity: doing the same thing over and over again and expecting different results.” Albert Einstein

I don’t need “resolutions”. I know what I want to achieve. I know how I want to best support my son and daughter on their journeys. But we are all lagging right now. I propose a reboot.

How do you reboot yourself?

Here’s a funny one – The Universe already gave me a head start. I have this giant running “To Do” list that I carry around with me. Which is hilarious because I always think I can accomplish sever or eight days’ worth of tasks in four hours :) Anyway, aside from the usual day-to-day minutiae I had been taking the same several “big” items and transferring them from list to list for over a year. You know, those things that really need to happen but have no due date? The items that make me feel like I’ve been punched in the gut every time I see them still on my list? Those.

Well, my list is gone. I went to do my usual “transfer” and I can’t find this sacred list anywhere. Message received.

Here are some other things you can do to facilitate a reboot:

Change your routine. Is there a new food or eating style you can incorporate into your diet? What about one vegan meal a week? Eliminating dairy? Adding an exotic fruit or vegetable that you’ve never tried before? How about a new exercise? Try some yoga, take a walk, go to the park. You can listen to a new band on CD, try meditation, or even sit on the other side of the room! Any little change to shake up the hamster wheel feeling. I know how important routines and schedules are to children on the Spectrum,  but you can make a game out of it and let them help choose your new adventure.

Take a break from electronics and social media. It’s so important for us to unplug sometimes. We don’t realize it until we actually step away. How about getting out in nature, visiting a museum, or playing some old-school games? Jacks, hopscotch, I-Spy… I’ll bet you forgot how fun they can be.

Sleep it off. Rebooting can sometimes mean we need to oversleep. My Malamutes don’t let me sleep in, but there are occasional days (once every few months) where I just collapse into bed before my children. We are torn in so many different directions these days that sometimes we need to shut down and let our bodies and brains restore balance naturally.

Go for a full system upgrade. Why not? Maybe it’s time for a new career. Maybe you want to start your own business. Or get that new car you’ve had your eye on. What about a big move? Is there a new part of town you’ve thought about moving to? A new city? State? Even country? Nothing says reboot like moving and starting over. Just make sure you’re not moving to run away from your problems – they’ll follow you!

What about you? How can you reboot, leave the lagging behind, and get a fresh perspective on your life? I’d love to hear what’s going on with you – share by commenting below or posting to the SOA Facebook page!

HeART of the Spectrum

HeART of the Spectrum Community Arts Center

I was recently introduced to an amazing organization called HeART of the Spectrum. It’s an inclusive art center in Seattle, WA founded by Michael Tolleson and Jack Anderson to encourage and support the artistic abilities of individuals with Autism and Asperger’s. A variety of classes as well as the HeART of the Spectrum Mentoring Art Program are offered at the center, geared toward individual interests and abilities.

In addition to the Mentoring Art Program, HeART of the Spectrum also has a unique gallery that features emerging artwork by individuals on the Autism Spectrum. Artists of all ages and styles have contributed their work, and over 50 pieces now hang in the ground floor storefront.

With so much focus on Autism as a disorder or disability, I think it’s extremely encouraging to see these two artists changing that by showing us the creative, focused and brilliant minds of those on the Spectrum. They are truly celebrating the gifts of Autism.

Because art can be the only form of expression for some of the artists who work at the gallery, Anderson and Tolleson say they strive to help them gain understanding through exposing their art to the greater community.

You can see video coverage by The Seattle Channel here:

For more information on HeART of the Spectrum, visit the gallery’s website or call 206-478-8342. I can’t wait to visit in person SOON!

autistic child disrespectful

Why is My Child So Disrespectful?

Have you ever enrolled your child in a great therapeutic or alternative program that offered improvements in behavior? Maybe things are cruising along, everyone’s in the flow… and then bam! Suddenly your child seems WORSE than before! Now there is some backtalk and strong opinions about things where there was harmony and eager-to-please attitudes before.

Or maybe you have a great set of tools that have been working for certain struggles at home or in school and then suddenly they stop. They wear off. The rewards lost their power and any consequences don’t seem to matter.

It’s very frustrating and confusing, especially when you can’t identify reasons or patterns. Erratic and disrespectful deeds and outbursts seem to be all you encounter.

If you’re like me, you immediately start analyzing where you think you’ve gone wrong as a parent, or what rules you are too relaxed about, or what changes should be made effective immediately to end this new attitude in your home.

Before you start calling military schools or Nanny 911, take a step back and consider what might be going on. It may not be disrespect at all!

There is a big picture. One that your child cannot identify for him or herself, so you have to play detective: be open-minded and look for some clues.

Sensory Processing issues

Is there a possibility of sensory overload present when you see these behaviors? Could something have changed in your home? A new vacuum, different light bulbs, more chaos (especially around the holidays!) or a family stress? What about different clothing or new foods? If you were being assaulted by your senses daily, you might “act out” to seek refuge or override an impending meltdown. To others this would look like a tantrum or behavior issue, but it may be as simple as making some adjustments in your home to accommodate oversensitive eyes or ears.

Fear from a change or disruption in routine

Many of us witnessed a great many outbursts and regression of old behaviors in the wake of Hurricane Sandy. Simple things like not having the right cereal bowl when you give your child breakfast may set off a litany of bad behaviors or verbal outbursts that seem unreasonable or like our child is seriously overreacting. What you’re seeing is your child’s need for safety and order. This is not a logical discussion or something you can “reason your child out of”. Order, safety and stability are basic human needs and they are magnified in situations that are happening outside of your child’s control (and outside of yours in many cases!).

Have empathy and try to keep as many of the routines and rituals intact as possible. Use social stories to explain natural disasters or other really tough situations.

Hormones

When puberty enters the picture you may have to throw everything you know out the window. It doesn’t matter how many years it’s been since progress was made or a behavior was licked. I dedicated a whole article to puberty and Autism that explains some of the lovely, odd things you may experience during this time.

Among these are unexpected rage over small incidents, new food likes and dislikes, sleep schedules running amok, regression of old behaviors, appetite changes, and sensory issues that are tenfold. Remember, if you’re having a hard time, imagine what your child is experiencing!

“Healing crisis”

This is a tricky one. When you see regression or outbursts you automatically assume something’s not working. However, it very well could be the opposite. Here’s a sensitive analogy:

When an alcoholic gets sober they assume life will be kittens and rainbows because they’ve stopped drinking. After all, drinking caused their problems, right? What really happens is all of the mucky feelings and issues that were being suppressed with alcohol come floating to the surface and the alcoholic must learn to now deal with these emotions in a new and healthy way. It takes time and work! New tools, new skill sets and lots of support are required.

When your child gets some of the major sensory issues out of the way with a new therapy, diet or treatment the same thing is happening. The fog is being lifted and now they must learn how to deal with the world in a new way. In some cases, your angel may be finding their voice for the first time. They might be exercising their right to an opinion, or learning to say no. This is a time for support and patience, even though it may feel like you want to start over or jump to the next option because this doesn’t seem to be working.

Lack of empathy skills

I have to constantly remind myself of this one. Right now, my son does not have the skills to understand what something might feel like to someone else. We are certainly making progress! He is so intelligent and advanced in so many ways that this one is easy for me to consistently overlook.

If you only knew how many times he hurt one of us or one of our dogs with proprioceptive crashing or impulsive behaviors and I blurted out, “How would YOU feel if someone did this to you?!?!?!”

“Um… dunno.”

I always thought this was disrespect, but he truly doesn’t know! We are now learning to try and equate something I would like to something he can relate to, and I’m seeing great results with this new method. For instance, when I don’t want him screaming in my face and jumping on me, I point out a time when he needed his space alone in his room to finish programming his new Mario world and then I ask for the same space.

Just being a child

Another one that flies out the window for me often. I am so entrenched in the world of Autism and Sensory Processing Disorder that I have to stop and realize sometimes he’s just being a boy! I have two brothers. One used to throw dried dog poop down the back of my shirt. During winter he would pack snow around a rock when we had snowball fights and nail me in the head. A brother’s job is to find his sibling’s hot buttons and push them as often and as creatively as possible.

Autism is not a “get out of jail free” card when it comes to unacceptable behavior for my child. It can be tough to discern what is bad behavior and what is self protection from a confusing world. I have to have boundaries and rules, but I can also have an understanding of the real meaning behind the behaviors so my choices come from a place of empathy and love when it’s time to take action as a parent.

What about you? How do you know when it’s disrespect and when it’s a behavior issue? Share your comments below of post them on the SOA Facebook page!

IEP Meeting

Getting What You Need and Want from Your IEP Meeting: Before, During and After

This week’s post is from special guest Erica DuPont, LCSW

Before: Positive self-talk!  If you tell yourself that everyone is against you in the meeting, then you will present with a negative attitude during the meeting.  Most teachers want the best for kids and are willing to support your requests and somewhat mentor you through the educational system. Having teacher support can go a long way.  If you are able to understand what resources the teacher needs in order to really help your child, then you can enlist an advocate to ask for those resources.  This way, the teacher is not put on the spot, or thrown under the bus, and the “neutral” person is asking for the additional support.  Keep the teacher on your team – let your advocate be the one that brings up the uncomfortable questions or suggestions.

Preparation is the key to success no matter what professional field, sport, or activity you engage in. The same holds true for IEP meetings. If you want to have a great IEP meeting then you must prepare ahead of time. When I accompany parents to IEP meetings as a professional advocate, I prepare ahead of time and don’t just show up to the meeting and try to wing it. Read over the list of academic standards for your child’s grade.  This will give you a starting point to know what goals and objectives would be appropriate to ask for on your IEP.  There is so much conversation and dialogue during these IEP meetings and it can be very emotionally draining.  Do not attend an IEP meeting alone. Even if you dress up your neighbor and they do not say a word, their presence is a support.  It is helpful to have someone taking notes for you and to bounce things off of after the meeting.

During: Stay calm.  It can be overwhelming to sit at a table full of adults…but do not forget…you are an adult too!  Actually, you are the most important adult at that table.  It is your child that all these people are meeting about.  It is within your right as a parent to excuse anyone from the meeting that you do not feel has an educationally relevant reason to be there.  You have much more control and power in these meetings than you may think.  If there is something you do not understand, please stop them and ask them to explain in detail.  It is helpful to have your list of possible goals and objectives with you so you can refer to them as your IEP is being written.  However, before the goals and objectives section of an IEP, there is a “Present Level of Performance” section that is reviewed by the team.  This is a summary of how your child is CURRENTLY doing in academics and other related areas.  Be sure to list all your concerns in this present level of performance – goals and objectives cannot be written if the information is not supported in the “Present Level of Performance” section.  You can always ask to go back and add to this section during the meeting.

These are common questions that you may be asked about your child during the IEP meeting. Consider these in advance so you are prepared:

1. What are your child’s strengths?

2. What motivates your child to learn?

3. What are your child’s areas of weakness?

4. Have you found any techniques or strategies helpful in addressing your child’s weaker areas?

5. Do you have a goal or anything in particular that you would like your child to learn this year?

In addition, you also have the right to ask questions.  Here are some examples of questions you might want to ask the team:

1. What specific learning strategies are written on the IEP?

2. Will peer tutoring by used with my child?

3.  Is the IEP academic plan based on learning functional skills? (reading a recipe, ordering from a menu, counting out money, telling time, etc.)

4.  At what age do you being involving my child in goal setting and self-advocacy

5. Do you feel my child qualifies for an FBA (Functional Behavior Assessment)?

After: What’s done is done, right?  No! You can request an IEP meeting at any time, as many times as you would like during the school year.  If you go home and read over your notes, discuss the meeting with your friend or partner and you feel something was missed, do not hesitate to call anther meeting.  The IEP is a working document which means it can always be added to or changed.

Make sure you get copies of everything.  Ask for a copy of the IEP, any pages you were asked to sign and the conference summary.  Please read over the conference summary carefully.  This summary addresses what topics were discussed during the entire meeting.  If you feel something is missing from the summary or do not agree with something on the summary, you can ask that it be changed or added or deleted BEFORE you sign it.  I know you are tired once the meeting comes to an end, but don’t give up yet until you feel comfortable with those conference summary notes!

Give yourself a pat on the back, these meetings can be stressful but you can feel more prepared and less overwhelmed with the proper support.  For more great IEP information for any state, including thousands of goals and objectives and tons of resources, check out our website at www.seemyiep.com.

Best of luck to you and your family.

autism disaster kit

What to Put in Your Autistic Child’s 72-Hour Disaster Preparedness Kit

As a native New Yorker, I would like to extend my sincerest thoughts and prayers to all the families affected by Sandy.

With the weather becoming seemingly more erratic these days, it’s more important than ever to make sure you have a 72-hour kit assembled for each family member ready to go. It could be the difference between life and death. Remember that it could take emergency personnel at least three days to reach you in the event of a disaster.

Being very involved in CERT, I gratefully learned what should be in every Disaster Preparedness Kit. For a great list of these basic items, visit the City of North Richland Hills website here.

However, as parents of children with Autism, we have the added pressure of helping them feel safe and maintain as much routine and order as possible during a time of great chaos. In addition to your general 72-hour kit, consider having these items on hand in a special grab-n-go bag for your children.

Find a bag that can be worn as a backpack or rolled behind you so you are prepared for any situation. You should try to pack a combination of your child’s favorite items and new things they’ve never seen – such as items from the Dollar Store. My children love opening new things, even the tiniest trinket or gadget. New keeps them busy, and busy = calm!

Here are supplemental items found in my son’s 72-hour kit:

Flushable wipes – he has serious “potty” issues, we cannot yet use standard toilet paper for bathroom functions. We would be in big trouble without these.

Special foods/snacks – if your child is on a special diet or has food sensitivities, consider packing natural, dye-free, gluten free snacks and foods. I know it’s hard to stay natural when you’re packing processed foods that need to keep for six months at a time, but there are definitely ways to choose “the lesser evil”.

Medications or supplements – we have an extra bottle packed of Juice Plus+, digestive enzymes, and probiotics that don’t need refrigeration.

Headphones/ear plugs – everyday noises are still too much for son; imagine the chaos of sirens, emergency personnel, or crowds of people milling about or frantically trying to reach safety. Noise-blocking headphones are a lifesaver for us.

Classical or favorite music – if your child enjoys music, an iPod or discman with classical music or your child’s favorite songs can have a tremendous calming effect. We have a copy of Wow Wow Wubbzy in addition to Tchaikovsky.

Duplicate of their attachment item if possible – I always keep items from Super Mario Brothers (I remember when it was Thomas!) in his bag for comfort. Believe me, we already had two of many of his favorite Mario items!

Fidgets/chewy tubes – keeping his hands and mouth busy is another key to feeling safe and calm. I love those squishy stress balls from the Dollar Store, especially the ones that light up! Chewy tubes or Chewelry keep him chewing, not blurting out verbal stims, which might send the wrong message to emergency workers (his screams are really loud and sound like someone is getting brutally injured).

Cards/puzzles/books – kick it old school and think of items that kept you busy growing up! You know, before there were DSi XLs, iPhones, apps, tablets… J

Handheld battery operated electronics – if electronics are a must (the kind that don’t require a charger) the drug store often will sell little handheld games like Tetris, Poker, or Soccer. Sure, the graphics are pretty bad compared to today’s amazing technology, but in this situation your kids will gratefully take ‘em!

Hooded shirt or sweatshirt – for my son, he sometimes needs to block the world out in order to self-calm. If you don’t have access to a sensory tent (wouldn’t that be nice in a disaster!) then the next best thing is pulling a hood over your face and blocking out the world for a bit.

Items to stack/count/organize – this has always saved our bacon when I used to venture out to public places like restaurants. Stacking the jellies or counting the sugar packets would buy me at least 10 minutes of me not having to chase him around!

Photos of family members – in case there is any chance you are separated from your child, each family member having family photos may be the quickest way to reunite.

Autism safety card – it is ideal to let emergency responders know as much about your child as possible – especially when it comes to Autism. Is your child verbal? How do they best communicate? Are there any other medical issues? What medications/supplements are they on? Allergies? Typical behaviors? Fears? Below is an example of one I made for my son when we first moved back to Atlanta and didn’t know anyone in our new neighborhood.

I hope you found this list helpful, and that you NEVER HAVE TO USE IT! Remember to change out the perishable items every six months, and have an emergency plan that you all practice together.

What about you? What’s in your Disaster Kit? Share by commenting below or posting on the SOA Facebook page.