Search for the Super Hero Therapy Dog

A couple of weeks ago, we were told that we should look into getting Bella an Autism Therapy Dog. I was handed some paperwork with some highlighted sections that more than applied to Bella, telling me why a therapy dog could work wonders for some of her issues. The part that stuck out to me the most was the part about “runners”.

It started last summer before we got Bella’s diagnoses. When we would take our afternoon walks, she would fight to get out of her stroller. Being as she’d just learned how to walk shortly before, she was still a little wobbly on her feet. Even with that, she would try to run. It seemed harmless, so we’d let her. Cy would go ahead of us, and we’d let her run back and forth between us. Rayne would join in, but would tire out long before Bella would. As she got older and more nimble, she would run faster for longer periods of time. I don’t think I’ve ever seen a child enjoy running as much as Bella did. The smile on her face was one of pure joy, simply to be running back and forth. One day, we turned the corner from our quiet street to the main road. Still on the sidewalk, I tried to keep her close to me, unaware of what was about to happen. In the blink of an eye, she darted out towards the road, completely uneffected by the cars whizzing by. I understand it NOW, but then, my heart stopped beating for a second and all I could see was my little girl being hit by a car and it being all my fault for not stopping her. Thankfully, the car was far enough away where it could slow down and give me a chance to grab her. When we were told that autistic children have no concept of danger and have boundary issues, that day made sense. When we found out that autistic children were known to run off, it scared me a little. What happens if one day, she manages to get away from us again? Where we live, there is little space between our houses, the sidewalk and the parking lot. If she ran out into the parking lot between the cars, no car pulling in would have a chance to stop. We’re very careful when it comes to being outside, but even the most observant parent can’t watch their child every single second. Unfortunately, with things like this, all it takes is that single second for something awful to happen.

The reason so many autistic children run, is the same reason they hit or pinch themselves, it gives them a sense of where they are in relation to their surroundings. When Bella runs, she can “feel” where she is in space.

The memory of that day was triggered when I read that autism therapy dogs can not only reduce the urge to run, they can save a child’s life if, by chance, the child does get away and starts to run towards danger. Along with that, the dog is trained to look for cues leading to a meltdown, it signals parents when the child is doing something unsafe, like putting non-food items in their mouths. At night, they are trained to lay with a child, and help them relax, until they fall asleep.

I was referred to the website Autism Service Dogs of America (ASDA) and I have to say, what they do with these dogs is nothing short of amazing. Every case of autism is different with different issues effecting different children. This organization takes into account YOUR child and what their specific issues are and trains the dog accordingly. In order to train the dogs to fit the specific needs of each child, the process can take up to one year. Of course for something this involved, the price of these dogs is considerable. The average price is $13, 500 accepted in the form a donation to the organization. When you are accepted into the program, they send you a fundraising package to help you figure out how to raise the money if you can’t immediately afford it. The majority of insurances do not cover therapy dogs.

We’ve been really considering this and we both agree that it would benefit Bella incredibly. We still have some time to figure it all out since the program won’t accept her until she is 4 years old. There is also a sister program that will let you pick out a dog (that meets the requirements) and put you in touch with someone who will train the dog for you. It’s not as involved, so it’s a little cheaper, but the dog will be trained in all the basic therapy criteria instead of specifically for your child. Either way, it would probably help.

We go back and forth on it. We know that we’d never be able to afford it. We’ve considered the fundraising and I’ve looked into it a lot over the last week or so.  I have to say that we’re a little lost on what to do.

So, I’m going to ask for some advice. Please feel free to voice your opinion.
What would you do? Do you think that an investment of thirteen and half thousand dollars is worth what you’d get for it?

Anyone have any tips on how to go about putting on a fundraiser?

At Home Therapy… on a budget.

Bella attends class twice a week. The rest of the week it’s up to Cy and I to continue doing all we can to help her improve. I had the honor of observing what Bella’s teachers do with her while she’s there and I got to see what her speech therapist does when they have their one-on-one time. One of Bella’s favorite times is when she gets to go to the sensory room.

You can order at home therapy tools online, but the prices can get a little steep. We have found that making your own not only saves money, but can get the whole family involved.

A few basic ideas to battle some of the most common issues that autistic children have (especially those effected by sensory integration).

• Earmuffs. A basic pair of earmuffs worn out when you know you’ll be in a large, crowded, noisy atmosphere. Headphones meet the same goal, and you can even play some calming music if you’d like. 
• Fidget toys are things that you can give your child when they are anxious or seem nervous for no real reason. It’s easy to make these and they are similar to “stress balls”. A balloon filled with rice is a perfect “fidget toy”. It can be hard to get the rice in there, but it only takes about half a cup. Tied securely, it makes a simply and easy toy for your child to squish and kneed. 
• A pop up tent. You can find these at almost any big retail store. They simply pop open into a one person tent. The enclosed spaced will help your child feel less anxious and having their own quiet space to retreat to can do wonders when they are feeling overwhelmed. 
• Soft bristle brushes. Brush therapy can help calm a child down or help them prepare for bedtime. Very soft bristles, rubbed along the arms, leg, back and tummy provides a soothing feeling while stimulating the senses. This can also be done with a tennis ball, a vibrating massager or you can do deep tissue massage yourself. 

You can make great therapy items yourself using stuff that you probably already have around your house. Some of them might require a little money, but all in all, it’s a much cheaper way to get the same types of therapy items they use in hospitals and schools, at home.

• A ball pit. A large box (or anything you can find really), big enough for your child to sit in and lay down in, lined with plastic (secured) and filled with colorful plastic balls. You can find the balls at most stores and it will run you about $20. A ball pit creates a multi-sensory environment. The balls massage the entire body and create deep pressure sensation. It encourages relaxation and helps with gross motor skills. 
• Weighted items. Weighted vest, jackets and blankets can help your child feel more centered and grounded. We bought Bella a child’s sized Tinkerbell backpack to wear. The general rule of thumb is to add 15% of your child’s weight to the item. So we placed 2, two pound weights in the backpack and it really seems to help her not feel like she has to constantly move around to feel better. You can make a weighted blanket by sewing bean bags (or Ziplock bags filled with rice or sand) into the edges of a favorite blanket. Also, a sleeping bag (child size) with added weight sewn in can help as well. They will like the feeling of being wrapped up and the added weight will help with sensory issues. 
• Bean Bags. For children who like to “crash”, meaning they like the feeling of their bodies crashing into things, you can purchase bean bags. It will give them a comfortable place to sit, fall into or lay on. An easy alternative is to use the cushions on your couch. We lay ours out on the living room floor and encourage Bella to jump, fall, roll and crawl on them. 
• Sensory tables. Find an old table, trim the legs down so it’s “kid’s height” and glue (or others wise secure) five or six shallow containers to it. Then fill each container with a different textured substance. Water, shaving cream, sand, flour mixed with water, baby powder, small pebbles or rocks. Then let your child go at it. Take the time to play with it too. This can get messy (but that’s the point!) so I suggest laying down some painters plastic and not doing this over carpet. 

Other easy things you can find for cheap that really help are large shape puzzles, shape sorters, blocks (the larger the better) that can be stacked up high. Bubbles! Everyone loves bubbles and believe it or not, simply blowing bubbles while your little one chases them around can help with hand eye coordination, motor skills and if you do it with siblings it can even help with anxiety when it comes to social interaction.

The following are larger items that may take a little construction, but are still totally worth giving a whirl.

• Swings. Indoor therapy swings can do great things for children with autism. It requires a little more assembly, but can be done easily with the right tools. I’ve heard of people using those circular plastic sleds you can find in any store during the winter or just a sturdy board covered with soft carpet swatches. Using sturdy rope or chain, secure it to the swing and then mount it to your ceiling. (If you know someone with construction skills, ask them to mount it to the ceiling to make sure it’s safe and secure). 
• Tubes, tents and steps. Taking a lot of the single items and putting them together creates kind of an obstacle course. You can find “fun tubes” at stores or you can make your own (that’s a little harder to explain and construct, but you can find these fun tubes for pretty cheap). You can put a tube into the entrance of a pop up tent for added stimulation. Foam mats or stacked cushions can work like unbalanced steps to help with coordination and motor skills. 
• Another great item is a single person trampoline. With this one, I think you’ll just have to buy one. Might not be as cheap, but it’s definitely a helpful piece of equipment to have. A hand rail/bar for your child to hold is a much needed addition to a single person trampoline, so make sure it comes with one if you buy one. 

I know that I don’t need to, but I feel like I should say that ALL of these ideas are meant to be used with adult supervision. One of the greatest benefits of these at home therapy items is to do them with your child. It promotes a connection, interaction and socialization, especially when other kids or siblings are involved.

There will be a follow up to this post in the coming weeks. We are in the process right now of finishing up a few at home therapy tools and when they are done, we’re going to take pictures of everything and share them as well as anything else we come up with along the way.

Remember, April is Autism Awareness Month

April 2nd is Autism Awareness Day

Mythbusters

The news media has perfected the art of spinning a hot topic and spreading less than accurate information. What is the point of raising awareness if the information you’re sending out there is incorrect? With so much misinformation out there, that keeps getting repeated, I thought that I’d bring to light a few of the repeat offenders.

Myth:
All autistic people are the same.
Truth:
“Like a snowflake, no two are the same.” When you’ve met one person with autism, you’ve met ONE person with autism.

Myth:
Autistic children have no emotions and are unable to feel or give love.
Truth:
To those that don’t know someone with autism, it could seem that way. For those of us who do, it’s clear that not only can they feel love, they can express it. Just not in the same way that neuro-typical people do.

Myth:
Autism is caused by “cold, distant” mothers.
Truth:
Trust me. I was neither cold nor distant to any of my kids. Years ago, doctors used to tell mothers that autism was their fault. Caused by a failure of the mother to bond with their child. We all know that this isn’t true, but there are still a handful of old fashioned doctors out there who think that a failure to bond causes autism.

Myth:
Autistic children are unable to learn.
Truth:
Quite the contrary. Autistic children are capable of learning new skills. Those that are non-verbal are able to learn to talk in most cases and sometimes, they can even excel at certain subjects.

Myth:
Autism can be cured.
Truth:
While an autistic person can make progress with certain issues they may have, there is no cure for autism. A non-verbal child leaning to talk doesn’t mean they’ve been cured and getting older and being able to handle certain situations better doesn’t mean they’ve “grown out of it”. Fortunately, a large percentage of those with autism will be able to live relatively  normal lives. With the right therapies and teaching, independent living is a reasonable goal. A small number will need care throughout their lives, usually those who have other conditions or have a lower functioning form of autism.

Myth:
Autism is the same as mental retardation.
Truth:
Autism is a neurological disorder resulting in a developmental disability causing difficulties in social interaction, language acquisition, and attention to the normal range of environmental events. Those with mental retardation can sometimes also have autism, which is why the two are sometimes confused as one single issue.

Myth:
If your child has autism, it means you did something wrong as a parent. 
Truth:
While the cause of autism isn’t known, what we do know is that no particular parenting style or lifestyle causes it. While there are groups out there who think that lack of discipline, certain eating habits and other environmental factors can result in having an autistic child, there is no evidence whatsoever that proves their outlandish accusations.

Myth:
When you’re child turns two, they’ll stop responding and “forget” how to talk.
Truth:
A recent news segment I saw that was supposed to be bringing “awareness” to autism, told parents that you’re child would develop normally until age two, when they’d suddenly forget how to talk, interact and make eye contact. For a reputable news station, I don’t know where they got their “facts”. While it is common for children to develop totally normal for awhile, none of the signs just happen. There are “red flags” and other signs all the way up until you get a diagnosis. Also, as in our case, Bella didn’t learn to talk and then stop. She never developed the ability at all. Regressive is more common but it is possible for a child to have a non-regressive form of autism.

These, along with many other, “facts” have been falsely reported in the news, TV and movies. We all know that drama makes a better story sometimes, but it can also create a false sense of knowledge for people. In order for people to better understand such a complicated disorder, it’s best to spread information that’s honest and true. I’m sure as time goes on, there will be a part 2 and 3 to this post.

Correcting those that might repeat one of these myths, can only go to help get the right information out there.

REMEMBER

Bella Counts To Four (Video)

It took some time, but I finally got Bella counting on video. She never says "five" because she's always expecting tickles. Guess we'll work on that next. Either way, here she is, counting to four! Yay!!

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“So, What’s Her Special Talent?”

Daniel Tammet, Ellen Boudreaux, Stephen Wiltshire, Kim Peek... you might not know who these people are, but they all have one thing in common. They are all autistic or severely mentally handicapped, and considered to be savants. Brilliant, genius, gifted, profound. All words used to described these people. Below average intelligence, is also used to describe them.

A common misconception with autistic people is that they are stupid. That they are slow or unable to learn. It’s actually quite the contrary. While some may register lower in certain areas, they can also excel in certain subjects. If there was a word to use beyond “excel”, that would explain it even better.

I’ve done a lot of reading up on what are called “autistic savants”, not because I hope this for Bella, but because I get asked a lot, “what is Bella really good at.” I can say with a degree of certainty that most of this stems from movies like “Rain Man”. While there is nothing wrong with that, since it does happen, it tends to make people think that ALL autistic people have a streak of genius in them, and when they don’t, there is something wrong with them. Ironic if you think about it. Something wrong because they’re NOT genius. Go figure.

One of the names I mentioned above, Kim Peek, is said to be the inspiration for Dustin Hoffman’s character in the movie “Rain Man”. This is a man who was born with severe mental disabilities. His IQ is well below normal and he could never do simple things like button his own shirt, but amazingly, he’s read over 12 thousand books.  He can read two pages in three seconds. The left page with the left eye and the right page with the right eye. He can recite everything he’s ever read, to the page number. Stephen Wiltshire, also known as the human camera, was born autistic. He didn’t learn to talk until the age of nine, but showed a great talent for drawing. He can draw perfect replicas of city landscapes and skylines after only seeing them once. He once drew a 33 foot long panoramic view of Tokyo, after seeing it once during a fleeting helicopter ride. His work is amazing and it's crazy to think that he's drawn these from memory. Ellen Boudreaux, is a blind autistic who has an incredible talent for music. She can remember and play any song she’s ever heard. She once heard the phone tell her what time it was when she was eight years old. Since then, she’s known exactly what time it is, to the second, able to keep a “mental digital clock” in her head.

These are impressive people with impressive talents. Their parents were all told that they needed to be institutionalized. Can you imagine? These people never would have had the chance to showcase and share these amazing talents with the world.

Bella, to me, is already amazing. She does show an affinity for music. She has an amazing ability to match the tone of music she hears. She doesn’t sing, she just vocalizes along. She loves to dance and because of her hyperflexibility, she can do pretty awesome twisty, bendy things. As I said before, she is still considered non-verbal, but she has shown that she can match, or mimic sounds, specifically numbers.

The possibilities are endless really and as her mother, I do hope that she finds something that she loves to do and excels at it. I guess I just wish that people didn’t expect it from her already, I mean, she’s only two. She’s got plenty of time.

A friend we were chatting with a bit ago said something that made sense. It’s like when you lose one sense, and your other senses overcompensate to make up for it. Maybe it’s kind of like that. They lose the ability to do simple tasks, but gain an amazing ability to eclipse the norms of something else. They say that autistic people are “locked in their own heads”, but maybe that’s how they discover that they have these talents in there.

It truly is something to be in awe of. These perplexing talents given to those who some consider inferior. I, being considered “normal” could only wish to have a sliver of some of their talent.

Can you imagine how the world would be if we were all able to tap into that little bit of genius that hides in our heads?

8 Ways to Communicate without Words

Although our daughter is beginning to form words, mostly the numbers one through four, we still have a long journey ahead when it comes to her speech and communication. I wanted to share a few of the methods we've tried in hopes that it might help someone else.

Pictures Cards
Autistic children don’t interpret pictures the same way that a typical brain does. We tried printing out pictures of her favorite things to turn into Flash Cards, but I read that Bella would understand it better if it was an actual picture. So, we took pictures of her favorite movie, snack and drink and then a picture of a diaper and her blanket. We printed these out at home, but you can print them at any photo kiosk. We found these magnet sleeves at Wal-Mart where you just slide the picture in and stick it to the fridge. The intent being that she can grab, or tap the picture when she wants that object. This worked well with Bella until she realized they could be taken off the fridge. Then they seemed to become toys. She would routinely pull them off and put them back on for fun. Also, this method doesn’t help when you’re away from home.

Sign Language
American Sign Language is one of the most popular ways to teach a non-verbal child to communicate. We taught Bella the most basic signs that she would use everyday. “More”, “drink”, “food”.  Then we would add another sign in as we went. Sign language is relatively easy to teach, but it does depend on how much your child can understand and comprehend at once. Our trail and error resulted in about 20 mins, three times a day. Any more than that and Bella would lose focus. Less than that and it would take longer for her to learn the sign. For us, Bella used five signs that she’d learned for almost two weeks. Then, for whatever reason, she just stopped. It’s been about four months now and she hasn’t used a sign since. Every time I sit her down to try again, she “protests”. I’m not a hundred percent on why she’s so resistant to use signs, but I think it’s in part to the fact that she’s created some of her own.

Observe. Interpret. Learn
Observing your child’s facial expressions, hand gestures and any change in tone of their vocalizing can be a great help at indicating what they are in need of. Learning to interpret the little signals your child gives you will not come easily. With Bella, it’s hard to decipher what is a motion for help and what is just another stim. It’s taken awhile, but now, when Bella does something like, tug on her lip, that’s her telling us that she’s thirsty. I think this might be why she didn’t take to traditional sign language. Bella has three or four signs that’s she’s made up and uses almost every day. They may be made up, but they work for her. So, if you’re child does a certain “stim”, observe what else is going on. It could possibly be them trying to indicate to you that they want something and they are telling you in their own way.

Text to Speech Programs
There are many computer  programs out there that can translate text or typed words into computerized verbal speech. Of course, we have yet to try anything like this due to the fact that Bella can’t read or write yet. She’s only two, but, for those who are older and have access, these types of programs can work wonders to help lessen the barrier for non-verbal autistic children and adults. Hacking Autism is a great site dedicated to apps for tablets and smart phones that were designed and created to help autistic children communicate. We have tired a few of these with varying success.

Make Contact
While most of the methods Cy and I have tried are to the benefit of our daughter, we reminds ourselves everyday that we are learning too. While most autistic children are resistant to physical contact, we make sure to engage in some kind of affectionate contact with Bella as much as she’ll allow. A quick hug or a kiss on the cheek while saying “I love you”, might not mean much to her right now, but it does make us feel better. I’d like to think that by doing this, Bella feels more comfortable. Even though it’s more for us than it is for her, it can’t hurt.

Repetitive Educational Videos
You can purchase DVD’s aimed at pre-schoolers to help your child. Repetition has long been proven to help teach children basic education. There are many options available, some that are even aimed at autistic children specifically. Watching them together with Bella has actually been quite fun. We get to see how she reacts to certain videos. We’ve noticed that she really likes the ones with a lot of music and doesn’t really care too much for ones that star “talking big eyed animals”. The only downfall to this method is that you’ll find yourself walking around most of the day with very simplistic song lyrics in your head.

Speech Therapy
In most states, speech therapy for school aged children is offered free. Sometimes a team will evaluate your child, or sometimes it will just be one speech therapist. They will determine what areas your child needs the most help and a plan will be written up. The one-on-one therapy is effective and very helpful. Most also allow parents to observe therapy sessions. Being able to experience what they do with your child at school or during therapy can give you a great jumpstart on what you can also do at home to help.

Practice. Practice. Practice.
Persistence is key. You will experience setbacks and it will sometimes feel like nothing you are doing is working. Trust me, it is. Every time your child is exposed to sounds, speech, stories, music, one or all of the methods listed, they are slowly picking up on how it all works. We were told that Bella would most likely never vocalize at all since she wasn’t a regressive autistic. She didn’t learn words and then forget them, she just never spoke. Now, she’s vocalizing a lot more and even making forming sounds that resemble actual words. Although she may never fully learn to speak, a combination of different methods can only make it easier for her express herself.

There are a lot of things we take for granted in life. Being able to so easily communicate myself was one of them for me. Watching Bella when she gets frustrated trying to express her needs and wants can be heartbreaking. As much as I get frustrated trying to figure out what she wants, I can only imagine what it must be like for her.

I really hope that what we’ve experienced can help someone else that’s going through something similar. With that said, if anyone reading has advice to offer, please feel more than welcome to share.

It’s Not Bragging If You Can Do It

I have been waiting quite some time now to make a post like this.
Bella has made some amazing progress that I wanted to share.  

Bella has begun waving! Not only is she waving, but she can now say “hi” and “bye” while she waves. Why is this so amazing? Well, the fact that she is using gestures along with words means that she understand the context of her speech. Now, to clarify, her words aren’t perfectly spoken, in fact, they are far from it, BUT, you can understand and definitely tell what she is saying.

I don’t mean to offend, so I apologize ahead of time if it does, but the best way I can to describe the way she sounds is to compare it to someone who is deaf. We were told that there is a small chance that her speaking voice will improve, but although her words might get easier for us to understand, she may always have an impediment in her voice. We were also told that because we are around her more than anyone else, we might understand her better simply because we’re used to hearing her. Either way, we’ll take it.

Secondly, and even more amazing is the fact that Bella is COUNTING. Yes, I said counting. Now, it started a couple weeks ago while we were all watching “Mickey Mouse House”. It’s an episode about counting. Rayne would sing along and count out loud and eventually Bella would vocalize along. At first, her vocalizing didn’t sound like anything, but after a few days, and a lot of “Mickey Mouse”, Bella began to sound more and more like she was saying the numbers too. I sat her on my lap one day and started counting with my fingers. To my amazement, Bella did it to. She even tried to hold up her fingers as she counted along.

“On”. “Foo”. “Fee”. “Or”.

She was counting!

I’d tried to get her to do it in front of others, but she would just shy away. I think that sometimes they thought that I was just being one of those mothers full of wishful thinking. Then, a week ago, Cy heard it. Then last night, my mother and sister caught her counting onions. Yes... onions. All the kids who go to my mothers house have a ball playing in her cabinets in the kitchen. They take everything out, then put it back in. They pretend they are grocery shopping. They have a jam session on the pots and pans. Well, Bella got a hold of the bag of onions and took them out one at a time, counting them as she went. So, we have witnesses now!

She’s doing well in school too! She doesn’t cry as much when we drop her off, she’s doing much better on the bus ride home. She’s not avoiding the other kids as much, although she’s still not interacting with them. She’s feeling more comfortable with her teachers and speech therapist.

Cy and I couldn’t be more proud of her. Even Rayne seems overjoyed that her little sister is finally talking to her. She doesn’t seem to care that it’s a few simple numbers. Rayne will count to four with Bella fifty times in a row.

I can feel it in my heart already.
I know it’s coming.
It’s only a matter of time before I get to hear her say “Mommy”.
(“Daddy” will be a very close second)
And with enough time and patience, I know “I love you” is just around the corner.