an autism journey

Archive for June, 2012

A Climber and Furniture Just Don’t Mix

Today, I finally gave in. I have been fighting what I knew needed to be done for too long now. Today, I removed the last of any unnecessary pieces of furniture/decorations from my house. I have a climber. There I said it. Time to accept it and move on. My son climbs EVERYTHING. Yup, EVERYTHING, and don’t tell him I said this, but he is just not very good at it. Now don’t get me wrong, he has got the knack for getting up there. It is the getting down part that he is not so good at. He takes the “jump down” approach and the higher the better as far as he is concerned. (I hope nobody ever tells him about skydiving and bungee jumping, because I know with certainty that he would want to try that too)

I have tried everything to stop it, but he really has the attitude of the more someone says no, the more appealing it is. So, I tried to give him more appropriate options. My living room looks like a playground (we prefer to call it the “therapy room”, because that sounds better, but I know what it looks like). I supplied him with a climbing structure, slide, trampoline, indoor swing, exercise balls, tunnels, stepping pods…. You name it, it is in there. Do you think that put a stop to the furniture climbing? Nope.

I really wanted to try to maintain some sense of normalcy (you know, have a little furniture in the house), but in the last three days, we have had  4 falls. The kind of falls that hurt enough to produce crying. If you know my son, you know what I am referring to. He has a high tolerance for pain. He is the kind of kid that steps on a bee and barely stops to look down at his foot and then carries on while we chase him around trying to make him stop playing so we can remove a stinger. So when he cries, we know it really hurts.

So, goodbye furniture. Goodbye decorations that having climbing potential. Goodbye stacks of anything that can be used for achieving higher ground. It has all been cleared out of my house. Now I didn’t do anything too crazy….. we kept the beds (although his sits on the floor rather than a bed frame due to the jumping suitability of a mattress), we kept the kitchen table, the couch, and the piano (and of course we kept all the “therapy room” items). It is just about everything else that is gone. For the safety of my son and my own sanity (well, let’s be honest… what is left of my sanity) any unnecessary items are gone.

I somehow feel a little more free today. The house seems a little more roomy and a lot less cluttered. Guests may need to sit on the floor, but on a positive note… the garage is fully furnished.


Hats off to Autism Dads

Being a dad is hard enough. It takes a lot for a man to stand up in the midst of this crazy society and be the man he needs to be for the sake of his children. Too many men simply walk away these days. To all the good dads out there… you are awesome!

However, being the father of a child with autism has its own unique set of difficulties. It is hard on us moms, yes, but I think the fathers are often taken for granted. Fathers sit in this awkward position feeling a need to “fix” things. Autism just isn’t a problem they can fix. They watch their child struggle, they work extra hard to find the means to pay for needed therapies and adaptive equipment, they often take on extra chores around the house filling in the gaps that us moms just can’t find the time to fill, and they often take on a role that is not often respected in this society of a caregiver. To me, there is nothing more loving than a father who sits in the middle of a busy store holding  his child in the midst of a meltdown not caring a thing about what anyone else thinks. To all those autism dads, you are one of a kind!

Today, being Father’s Day, my six year old son with autism and his big sister gave their dad a basket  with  a few simple treats. Now let me tell you that I love my kids, but I have learned that when I am given candy…. It must be hidden quickly and eaten out of sight (oh come on, I am not the only one). My husband, however, has yet to realize this. My son, quickly began to take back what was intended as a gift. So, in the end, my son ate most of the candy, but his daddy willingly gave it up. The sacrifices of an autism daddy never end….

Happy Father’s Day!

My Top Ten iPad apps for Kids With Autism

When my son got his iPad, I had no idea how overwhelming it would be to try to pick appropriate apps for him to get started with. There were so many out there to choose from. Through the advice of other autism moms, therapists, and a whole lot of trial and error, I have developed my own top ten list. Keep in mind, that no two kids with autism are alike…. What interests my son, may not interest yours or your child may have completely different needs, but hopefully, this will at least spark some ideas to help you get you started.

#10 Injini Lite (free)

This app is a smaller version of the actual full app. It only allows you to play a small portion of what is offered. However, it is a really neat app. You can feed animals, sheer sheep, solve puzzles, play a game called squares (which reminds me a little of the old electronic “Simon” game), tracing, pop correctly colored balloons, etc. This is the most I have seen offered in a free app. What it really does though is make you want the full version (which my son uses in therapy) but at the sticker shock of $29.99, we are making do with the free version at home for now. My son plays this app weekly, but would probably play it daily if we had the full version. The levels they offer in the lite version have simply become too easy for him. I will certainly consider purchasing the full app in the future.

#9 Sesame Street The Monster at the End of This Book $3.99

Really nice book that allows you to play along in the story. Grover tries his best to keep the reader from continuing on in the story, but the player can overcome the obstacles much to his dismay. Just a fun book, but it does usually require some assistance from a grown up to help my son complete some of the tasks. (It is cute enough that the grown up doesn’t mind.)

#8 Monkey Preschool When I Grow Up $0.99

This cute app allows you to select a monkey to dress in appropriate attire thus selecting a career for it (or sometimes multiple careers). Once the monkey is dressed, it tells you what it wants to be when it grows up and does a little dance and you can start all over again. This app gets selected often, but doesn’t keep his attention for long.

#7  I See Ewe $0.99

This app allows you to choose from the options menu if you want to work on identifying objects, colors, animals, shapes or you can choose a  variety. It also allows you to choose how many cards you want on the board at a time (difficulty level).  For example, with colors, using the 4 card choice, 4 cards come up and it will tell you… “find the brown triangle.” This very simple game is really good for working on receptive language skills since you are listening to verbal request (you can work without the verbal prompt and choose just a written prompt if desired). You can also choose a memory/concentration game. This app is played off and on throughout the week, but it only keeps his attention for a couple minutes at a time. He usually plays this and moves onto another app. My only complaint with this app is that the settings option button is right with the game play buttons. My son is notorious for going in and changing not only the settings for the difficulty and skill being worked on, but he also thinks it is funny to change the language setting.

#6 FreeFall Spelling $1.99

In this app, letters fall down from the top of the page and you must drag them into their proper spot to make a word before they reach the bottom of the page. If you place them incorrectly or not fast enough, they simply scroll back down the page again until you get it right. It also periodically gives you a keyboard and a word to type. This app can be challenging at first for a child to figure out and you must be able to move fairly quickly with it. Still, a nice app and worth the $1.99. This one gets played weekly at my house.

#5 Super Why $3.99

Based on the PBS show, this game has 4 activities to choose from. Princess Presto leads you in “Wands Up Writing.” Using beginning phonic skills, a letter is selected matching the sound and then you trace it. The only complaint I have with this game, is it doesn’t not require a flow in writing the letter.  For instance, you can start at one point for the letter o, stop and put your finger on the other side to trace part and then stop and finish at another spot. I don’t think it really does much to teach proper writing techniques. Alpha Pig leads you in a game of “Lickety Letter Hunt.” This game teaches letter recognition as you form a word. If you guess wrong, that letter will disappear leaving you more likely to select the correct answer. Wonder Red leads “Rhyming Time.” Rhyming is a hard concept for my son, but the fact that the wrong answer disappears when you make a mistake helps. Super Why’s “Story Saver”  works on reading skills as you finish the story. When a wrong word is selected, the scenario is acted out using the word which allows for a little silliness to make the idea of a mistake a little less frustrating. The wrong word then disappears as in the other games. This app is played weekly.

#4 Monkey Math School Sunshine  $0.99

This math game works on beginning math concepts such as recognizing numbers, number order, least amount, patterns, and simple subtraction. There are also games for tracing shapes and connect the dots. You continue on until the correct answer is provided. When a task is completed, you can add items to your aquarium as a reward. This app is played almost daily.

#3 Handy Manny Workshop $0.99

This app has 4 games to choose from. In “Find It” the player searches the scene for all the characters from the show. A help button highlights where the characters are to give assistance. In “Match It” you can play a concentration type game matching up the characters on the picture cards. Again, assistance is provided if needed to avoid frustration (that is important for us since a frustrating task is an avoided task at our house). “Puzzle It” has 3 levels to select from and gives several puzzle choices in each level. This is great for kids who have fine motor issues that make working a traditional puzzle challenging. Simply use your finger to drag the piece into place (a help button is provided here as well). Each time a task is completed in the above games, a very short clip plays from the tv show as a reward. My son’s favorite part of this app (although he likes them all) is “Color It.” There are several scenes to choose from to virtually color on. A very light touch is all that is needed to apply color onto the page, making it simple to use. This app is used almost daily.

#2 Monkey Preschool Lunchbox (from the same makers of Monkey Math School Sunshine and Monkey Preschool When I Grow Up) $0.99

This cute app never gets old with my son. It works on a variety of concepts like colors, shapes, counting, letters, etc. It also has simple 4 piece puzzles to solve. There is a little monkey who jumps up and down when you get a correct answer. (The tropical tune playing as background music never leaves your head though) The app randomly selects which game to work on, which works well for us, since it doesn’t allow my son to simply play one part of the game over and over. This app is used daily and keeps his atteniton for quite awhile.

#1 iWrite Words $2.99

 My son’s all time favorite app (and mine too). Perfect for working on fine motor skills and teaching kids to write in a non threatening way. My son is fascinated by letters and numbers, but because of his problems with fine motor skills, writing is a very difficult task and can be very frustrating for him. At the time he first got his iPad, he could not even hold a pencil correctly. This app allowed him to use his finger to trace the letters and eventually he worked his way up to tracing them with a stylus (we purchased ours at WalMart for $12).  A cute little bug type creature acts as a prompt guiding you through the correct letter formation. You can choose from uppercase or lowercase letters, numbers, or whole words. This app came with the recommendation of his Occupational Therapist who uses this app with him often in therapy. This one gets used more than any of the others.

Not So Ordinary Moments

If there is one thing about autism that brings about something good…. It is the deep appreciation it brings to not so ordinary moments. There are times of a mom’s life that become so ordinary that I think they are often taken for granted. The moments when your child asks you a question, wants you to play with them, gives you a hug…..The moments happen so many times a day, that a mom just stops putting any thought into them.

  It is not so when raising a child with autism. You look at things different than most. Although the difficulties can become overwhelming at times, somehow there are more cherished moments than I think a typical mom has. Those special moments are cherished, because you know how out of the ordinary those moments really are.

Tonight, my son pretended to be a cat. He is six years old. That is something most moms would probably think nothing about… but, for my household, it was celebrated. The moment was so amazing that I have already replayed it over and over in my head wanting to hold on and not let go of the memory. It was his first time ever pretending, and it was AWESOME. It was brief, but for a few moments, there was fun, laughter, and most important of all…connecting. It was a moment that gave me hope… hope for there to be many more moments like this in our future. It was a moment that I will cling to when times get tough, a moment that I can’t wait to have again. A moment forever cherished.

Fake dogs, bad soda, and not so charitable giving

As if the drama isn’t reading like some bad movie script as it is, a recent article from the Chicago Tribune came out with a most recent statment from Global Giving on the whole Pepsi Pup mess. Yet again, they are just trying to wiggle their way out.

I am just going to refer you to the blog posts of others involved in this mess. I don’t think there are any warm fuzzies going around for Global Giving right now. 

Oh and yes, we are all aware that you are keeping tabs on our blogs…..

Pepsi Pups Update

In the last few weeks, I have been asked several times…”whatever happened with the whole Animals for Autism/Pepsi Pup mess?”  (If you are wondering what I am talking about, you can go back to my previous posts on the Pepsi Pup mess).

Here we are June, a full year since the families became involved.  Ten children had been promised “free” autism service dogs from Animals for Autism through a Pepsi Refresh Everything Project. It was quite a publicity stunt. Pepsi even had the children’s names listed on their site along with pictures of adorable little puppies (what a shame those puppies’ pictures were several years old). The founder of the so called organization was given $50,000 for the project and service dogs were to be ready this past spring. Some of the families had already paid money for these so called “free” service dogs, but that is another story.

Well, guess what? There are no service dogs. To my knowledge, none of the families have been able to make any contact with Animals for Autism. (I cannot confirm all of them, but I have heard from most). Pepsi seems to have washed their hands of it entirely and Global Giving (the organization overseeing the grant) seems to have nothing to say. I sent them an email last month and they never bothered to respond. It seems the individuals who had been previously assigned this project have moved onto other things. It seems unclear who is now actually over  this project (if anyone). The organization that had spent so much time reassuring the families that everything was fine and to just sit quiet and wait, now seems to have nothing to say. Keep in mind this is the same organization that said they were on the grounds of the “facility” last January and saw 20 dogs on site and saw training in progress.  Now they sit quiet hoping this all goes away.

Last August, the case was brought to the attention of the Illinois Attorney General’s Office by one of the families. In November, several more complaints came in from some of the other families involved. Yet, none of the money has been returned, nor any charges brought against the founder.

So, to answer the question as to what happened to the Pepsi Pup Mess? NOTHING. No apologies, no explanations, no contact…nothing. Sometimes the bad guys win….momentarily.

On a much more positive note, three of the families will be receiving service dogs beginning in October from 4 Paws for Ability. They are the good guys who stepped in to clean up the mess. Wouldn’t it have been nice if Pepsi and Global Giving had chosen to have used that $50,000 to fund a real organization like 4 Paws for Ability? Maybe someday they will figure out where they went wrong.

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