Why We’re Getting an iPad

I’ve got to get the word out. I think the Apple iPad is going to be an amazing tool for kids with autism, and we’re early adopters over at my place. We’ve placed our pre-order, and can’t wait to receive it on April 3!

When stirrings of the new iPad were floating around, an idea popped in my head. Hmmm. Josiah likes our iPod Touches. He seems to be a big fan of buttons and electronics. The touch screen is easy to grasp. So, if he’s drawn to the iPod, the bigger iPad could be great for him. Heck, I’ll even see if his ABA therapists would incorporate it into their therapy and we could shuffle it back and forth between therapy and home and see if we can’t give this kid a voice. They were all over it.

Here’s a video that gives a good overview of what an iPad does:

So, 5 reasons why to get an iPad for your child with autism:

1. It’s thin and lightweight=super portable and even COOL. Josiah appeared to be a good candidate for the DynaVox speech machine when they came and did an assessment. But for the life of me, I can’t figure out why these things cost $8,000. Is this the 1950s, and do they fill up an entire room? At first blush, I think the apps that are out there for the iPad (and those that will most certainly be developed) may give the 3″ thick and 10 lb. DynaVox a run for its money. The back and forth ease of the iPad between child and therapist, child and parent, home and school is going to be sweet.

2. It’s only $499–a one-time expense. Sure, I get that you would be hardpressed to find any insurance that would cover this expense–right now–but for all the money that flows like a river out of our household for various biomed, sensory items, therapies, and co-pays, $499 feels like a value to me for what we will get from the iPad.

3. There’s an app for that. The iPad will run all the downloadable apps currently available for the iPhone/iTouch, and there are many apps being developed specifically for the iPad as we speak. The sky is the limit for the apps that will be downloadable at the touch of a finger. Who has to worry about loading software on CDs? This is so much easier. From what I’ve observed, I believe Proloquo2go is going to be the foundational app to have on the iPad for Josiah. It’s kind of like your entire PECS functionality in an electronic version (see the video below), and you can also add your own pictures in. At $189, this app will likely to be the most expensive one we’ll ever buy, but it will be the most important. We can also load it on our iPod Touches for easy portability. Most apps cost $.00(free)-4.99. Go here, type in “autism” and you’ll see about 100 apps. Type in “preschool” and you’ll find about 500.

  • Some great apps I’ve found and am currently using:
    iCommunicate (simple visual schedules)
    LearnToTalk (Flashcards that talk and spell)
    Virtual wooden puzzles, shapes games

4. Internet, iTunes, photos, downloadable books, movies and songs–all accessible by touchscreen. The options are really endless when you control the content you wish to go get or load yourself. And for things like storytime, the child will be able to look at books and turn the virtual pages like you would with a real one. Penguin is currently developing interactive kids books and schoolbooks for the iPad that look incredible. Check it out!

5. You can get make it tougher with a good case. Now, I know the iPad will not be indestructible by little hands, but you can buy a great case to make it a little more rugged. I like this one: Hard Candy Street Case. It looks pretty protective, and you can take off the front cover and simply snap it to the back when the tablet is in use.

So, there you have it. My “case” for getting an iPad for your child with autism. It’s something that will grow with them, and will be helpful for little kids and older kids. We’re going to integrate it right into his therapy, get training that’s on the same page with his therapist and what is useful for home, and hopefully get Josiah more empowered to communicate, learn and get more speech. Once we get juicy Apple into our hot little hands, I’ll let you know how it goes!

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You Got the Diagnosis–Now What?

Two years ago, we got slapped with our son’s autism diagnosis. Feeling a bit shell-shocked, we walked out of the autism-specific clinic carrying a heavy diagnosis and a very light folder that included some pamphlets on what to do now. Of the pamphlets, there was one on creating a living will, one on genetics counseling, and one on tracking devices (for your kid who will likely be a “runner” and may drown in a nearby pond). We also got the lecture from one of the doctors that we can “waste our money on THE diet and all that biomedical stuff that is purely local wisdom and anecdotal,” but he wouldn’t recommend it. All in all, crap sandwich.

I buckled up my sweet little curly-headed two-year-old into the backseat and couldn’t help but wonder about his future. My husband and I looked at each other, emotionally worn out. It was like we had officially been handed down a life-long sentence, and we knew we were on our own. WE would have to forge a pathway for our son and shoot for success because no one else would do it for us. If hope didn’t fall in our laps, we vowed we would go find it for ourselves. So, it was from other autism parents, and in locating the right books, and Googling until we unearthed some treasures of hope, that we created a sketchy map for ourselves. Granted, the land of autism is more rocky, treacherous and mysterious than the Afghanistan wilderness. But the “wisdom of the locals”–as it were–can be the most helpful for locating the caves and navigating the mountain passes, if you will.

So, while I am not the best and brightest in the autism world, I will share with you my crash course for what to do if you have just received an autism diagnosis. Aside from the obvious loving on your kid like crazy, we’re talking first-things-first, and you kind of have to do them simultaneously. Sorry, this will be long. I invite others that “have gone before” to add to this in the comment section.

MY RECOMMENDATIONS (I’m not a doctor, nor do I claim to be):

1. You must know that you cannot trust everything that your doctors tell you. You’ve got to do some research and take the reins on this one, as scary as that may be. You’ll come to know that there are a couple of schools of thought on autism. You’ve got your “it’s genetics and hard-wired” school, and you’ve got your “something environmental triggered susceptible genes to result in autism” school. Here is where it’s a little like religion. You will probably have to choose what your denomination is because that will influence your course of action, the books you read, the conferences you attend. There is some faith involved. Generally, either you are an “autism Lutheran” or you’re an “autism Charismatic.” (Think, though we’re all on the same general team, one side calls the likes of Jenny McCarthy a heretic, while the other side reveres her as a prophet.) Somewhat difficult to be a lukewarm autism parent if you have any sense of curiosity to find out what happened to your kid.  

2. Watch the little documentary we produced, called “Surprised By Autism.” In thirty minutes, you can get a quick overview of some of the basic resources and services to know about, and make a heart connection from the viewpoint of a parent. My husband created this documentary with parents new to the diagnosis in mind, mostly because some of the videos shown at “autism orientation” meetings we attended were old, outdated, and frankly–SCARY! The parents looked like they wanted to fall on pitchforks and get it over with. We were not willing to let that be us.

3. Books you should pick up and devour immediately: 1. All three of Jenny McCarthy’s books: Louder Than Words, Mother Warriors, and Healing and Preventing Autism. 2. Facing Autism. 3. Autism Sourcebook. 4. Overcoming Autism. I know it’s a lot and you probably won’t understand it all right away, but it will give you a foundation you will appreciate, and most importantly, HOPE. (Most of the links are under my “recommended reads” in the navigation.)

4. Yes, I would say you should try THE DIET. Perhaps you’ve heard these code words. GFCF. What in the world, right? Well, gluten-free, casein free (wheat and dairy-free) is  the foundational autism diet that many parents attest to helping to “lift the fog” from their child. Smiles can return, attention, focus, etc. First step: eliminate all dairy. You really can do this because there are a lot of substitutes out there, but you must be aware of all the hidden places dairy is lurking, and it’s got to be a very strict approach to see if it’s working. BTW, soy is not a great substitute, as studies are showing, so we’re talking replacing your cow’s milk with stuff like rice milk, almond milk, potato milk, hemp milk–that sort of thing. Get out your Birkenstocks and wool socks, my friend, you will learn to love the health food store–though luckily many of the major chains are coming around to offer these alternatives. You should be able to tell within the first month if there is a difference. Then, you can follow with taking out gluten. I would recommend these books: Book With A Long Title by Karyn Seroussi, and Special Needs Kids Eat Right. And, there are about a billion things on this ANDI website.

5. Know your educational therapy options. So, your county might have some autism services to offer you, along with your school district, and maybe some outside speech and occupational therapies through various centers. Unless you are really keyed-in, you may miss this whole other world called “Applied Behavior Analysis”–or ABA–therapy. I ask you to exercise a little discernment here. In my experience, the county, etc. will tell you that the 3-10 hours of one-on-one therapy they will offer your child is enough, but the research says differently. Recommended therapy for children with autism is 25-40 hours per week, and the most scientifically proven therapy for kids with autism is ABA (which has some offshoots). Look into this option to see if it’s a fit for your child. There are therapists that will come into your home, and there are some autism therapy centers that offer ABA. You can find out more about in-home options at the Lovaas website, or seek out center-based options like Partners in Excellence. You’ll have insurance and money hassles to deal with, but it’s worth it. There are many other options for therapy. I’m just sharing what I know here.

6. Bookmark and refer to these websites often: www.generationrescue.org,  www.talkaboutcuringautism.org, www.autism.com. These will lead you to many more resources.

7. Get your child on a path to physical wellness. Autism is not just a genetic or mental disorder. There is stuff going on in bodies of our kids with autism that typically is only being treated by alternative medicine practitioners. Vaccines have likely played a factor, maybe ear infections, detox issues, frequent antibiotics that have messed some things up for your child. The standard autism doctors in the “biomedical” world are called DAN (Defeat Autism Now) doctors. They are licensed and trained in this approach and can be found throughout the nation–many are wellness or chiropractic doctors as well. Go here to find one in your area. It’s not covered by insurance usually, but at least start with a consultation and develop a course of action. There are also things nutritionally that you can do right now, without the advisement of a doctor–vitamins and nutrients that could make a difference. Jenny McCarthy’s latest book is the best I’ve seen to address that, including recommended dosages, brands, etc.

8. Communicate with your spouse. Friends, in the early days, this is a sprint but it’s training you for the marathon. Life is not the same, nor will it ever be. There is grief. There is pain. There is crying. There is loneliness. Faith is shaken. Love is tested. High days. Low days. Hoping days. Coping days. The best of you. The worst of you. It’s all a major journey and process. And, I say that all because you must give yourself and your spouse a break. This IS a big deal, and each of you will wrestle with the emotions and stress in a different way. Just don’t close yourselves off to each other. Be open and compassionate, and try to get on the same page. Fight autism. Not each other. Read this. Eighty percent of marriages fail when faced with autism. Will you make a commitment to each other to close the backdoor, no matter what? Even the strongest marriage will face very distinct trials, and commitment will have to carry you past how you “feel” about each other at times.

9. Get some support in place. Run, don’t walk, to find at least one other parent out there who has a kid with autism, and subscribes to some of the same basic theories as you. Your circle will expand from there. I would say it’s best at first to find one that has a child that is less than 2-3 years older than yours. Their story will still be fresh, and their resources current. You also have to be careful not to compare your child with theirs. Autism is a spectrum. Each child is different. Thankfully, many friendships are able to be forged online these days. That has been huge for me. But, I have a special place in my heart for that one mom that I met with that got me started, let me cry and pick her brain, and took me under her wing in those early days. There are some good support groups out there. I would recommend TACA.

10. Take care of yourself. I’m talking physically, spiritually, mentally, emotionally. You may need to find a therapist or counselor. Get in your Bible. Find out God’s promises. Try to get some sleep. Get away from autism sometimes. Go out on a date. Eat right (not emotionally eating, like I’ve been doing). Exercise (do as I say, not as I do). Get out with girlfriends. Sit and have some coffee alone. You NEED this. You’ve got to, or you’ll burn out. And don’t worry… your heart will probably be re-purposed by autism, but you will dream new dreams and brighter days will emerge again.

Well, I think a top ten will suffice for now. There’s a lot more like helpful products and going green for your child, but this will get you started. My hundreds of  hours of reading, researching, learning and living about autism boil down to this basic cheat sheet for you. I hope it helps. There are so many of us out there cheering you on. You’re not alone!

Top 10 Products I Dig

Having a child with autism forces you to hunt high and low for anything that will help make your life easier. Or helps you do what is needed to get vitamins and food in, keep toxins down, and keep your kid happy in a pinch. For you parents of children with special needs, here are my top ten products. I’d love to hear about your “must haves.”

1. Ian’s Chicken Finger Meals and Wellshire Kids Chicken Bites. These are great to send to school with Josiah, and they are Gluten/Cassein free and the chickens have no antibiotics and were fed a vegetarian diet. Meets my kid’s approval. I can get the Ian’s at Super Target. Hillshire Farms is more of a Whole Foods sort of product.

2. Metagenics Ultra Meal (Rice or Soy) and Nutrition Dynamics Dynamic Greens. I’ve got a picky eater–most autistic kids are–and I get concerned about whether he’s getting the protein and veggies he needs to be well nourished. These GF/CF products, recommended by Josiah’s DAN! doctor, are tasty and good for mixing the nutriceuticals into, and they’re power foods. The Dynamic Greens has like 50 vegetables in it, probiotics, enzymes–you name it. It’s green in color but it tastes like berry and is sweet. Josiah swigs both of these down. His poops have been better with these too!

3. Stainless Steel Margherita Shaker. No, it’s not for what you think (not that I haven’t thought about it!). Morning and night I have to mix Josiah’s supplements together into a “tasty” cocktail. Blenders require too much washing. I’m trying to get rid of plastic products that can leach chemicals into the liquid, so when Grandma recommended the margherita shaker, I jumped on it.

4. Seventh Generation Cleaners. This is a full line of cleaning products that are affordable. They’re both eco-friendly and non-toxic and natural. From dishwashing liquid to shower cleaner, detergent to kitchen spray, I replaced my cleaners with Seventh Generation. I know you can get these at Target and many other retailers.

5. Stainless Steel Sippy Cups. I’ve got the Thermos brand with a straw, and will be ordering the Kleen Kanteen sippy cup soon that’s a little more like the traditional sippy. Plastic bottles and sippies may have harmful Bisphenol A chemicals that have been theorized to cause all sorts of issues from developmental problems to childhood cancers.

6. Organic mattress, bedding and pajamas. It was an expensive switch, but Josiah’s DAN! doctor suggested setting up an organic sleeping situation because nearly all baby crib matresses are bathed in flame retardants, along with kids’ pajamas. Josiah’s heavy metal toxicity tests showed higher levels of antimony and arsenic, both found in crib matresses, much to my surprise. Those flame retardants are bad news!

7. Burt’s Bees Baby Bee Shampoo and Bath Wash. This Burt’s Bee product line can be found in most health food stores and also in a place like Target. Don’t forget how the skin can absorb chemicals that aren’t good for the chemically-sensitive kid. Okay, I’m going to double this one up and also recommend a natural sunscreen: JASON Natural Kids Sunscreen.

8. Dyson Vacuum Cleaner. I just purchased one of these. I never imagined I would spend almost $500 on a silly vacuum cleaner, but after doing some research, I decided it would be a good investment. It’s the only vacuum endorsed by the Allergy Association to remove the allergens out of your carpet. Studies have shown that there are shocking levels of dangerous chemicals in household dust, including plasticizers and flame retardants. Okay, I was shocked that I had to empty 4 canisters full of nastiness from the first cleaning in my house with the Dyson. My carpets had looked clean and we always take our shoes off and have no pets. Apparently my old vacuum really sucked, or um, didn’t suck. I feel like I’m going to clean up some hidden hazards with this.

9. Musical Books. The Elmo Mini Deluxe Piano Book is Josiah’s favorite. He’s a real music lover, so books that have buttons to press that make music are great to take along to the shopping mall, or have at the ready at home. They’re calming and they take him to his happy place. Keep batteries on hand!

10. Super Safe Color Viewers. Josiah’s therapist had gotten some of these at school and recommended them. These little hand-held viewers are available at Lakeshore Learning Centers, and are a new favorite of Josiah’s and are good for teaching primary colors. Josiah is sometimes attracted to lights, so this makes looking at them more appropriate and is helping him to identify and label colors.

What are the products you would endorse? Please share them with others in the comment section!