Spreading Love and Knowledge

Today's blog is a little bit different than most I write. I want to share the story of a little boy and the sanitation worker who took time to make a little boy's day (he didn't know at the time that Greyson was on the spectrum). Greyson is an amazing and very special little guy. He was in my boys' class last year for a while and my little ones actually spent enough time with time with, they took to calling him Grey (it's much easier for them). I try to keep up with his progress through the blog his mom writes. Though I haven't been able to read it for quite some time, something tugged at me to check in and I'm glad I did.

When the boys see a picture of Greyson, even Daniel, the mostly non-verbal twin repeats Anthony when he sees Greyson's picture. "Grey" Anthony will say, then he smiles and is on his way again.

Anyway, there was an article in our local newspaper, then on the local t.v. about Greyson. Then, if that wasn't blessing enough, the NBC Nightly News put it in the Making a Difference segment.

You see, Frank, a man that drives a garbage truck for their area, and Greyson loves the truck. On pick up day, Greyson's mom takes him outside to watch the truck. Like most autistic boys, he jumps up and down, flaps and genuinely shows his excitement. One day Frank, after seeing them outside week after week, pulled over and met with them. He let Greyson get in the truck and not only did Greyson get a great deal of satisfaction, he actually spoke a 3 word sentence - spontaneously. That's HUGE!

When I told the boys that Grey was coming on T.V., they actually stopped what they were doing to see the television. (They've never directed their attention so fast, at least not without a 2nd or 3rd prompt). When they saw Greyson they both froze for a minute as if trying to figure out why he was on their T.V. and not here in person. Then, all of a sudden they started jumping up and down, flapping their hands and squealing with delight to see their old friend. My sister, her daughter, my husband and I were so amazed that not one of us was able to get the camera out before they stopped. We never expected that kind of reaction.

You can find the story that started it all on Chrissy's blog:

http://lifewithgreyson.blogspot.com/2013/07/harvest.html

and the NBC Nightly News link:

http://www.nbcnews.com/video/nightly-news/52582150#52582150

I hope you enjoy it as much as we did.  :)

From a mother's heart - as long as we keep moving forward and spreading the word, we will make a difference together.

The Same, But Different

Most days the boys stim (self-stimulating behavior) for one reason or another, it's their way to help themselves feel better. Most people on the spectrum do. It  provides a sense of clam, security and peace. Like kiddos that cannot be without their favorite teddy, pacifier or favorite blanket. It meets a sensory need, it's a comfort for them. Autistic kiddos like things that have a specific movement, sight, feel or sound. Most all the kiddos I've met so far with ASD (autistic spectrum disorder) are fascinated by objects going round and round (like wheels, spinning tops, etc.). Sounds like a "big" truck, chimes, bells, music, etc. The feel of a certain fabric whether to the touch or chewing. Then there's sight, many spectrum kiddos seem to be fascinated with details, they will study something, sometimes for hours. It's almost an obsession for them.

When the boys get overly excited about something, another type of stimming behavior shows up... flapping, jumping, clapping, are just a few. This is pure joy.

Then there are also those things that can set off a need to stim, or be the cause of a meltdown. For our babes they include: certain fluorescent lights, loud speakers with loud music. These things can change from time to time as well, for instance, Anthony once loved birds, they would set off the hand flapping and jumping. Then came a time when he would positively "freak out" if a bird landed in our back yard. He still isn't comfortable if birds are to close, but he loves when a group of Canada Geese fly over in their formation and are honking to each other.

This is just another way that someone on the spectrum is the same, but different than a stereotypical kiddo. They seek comfort in whatever way they know helps them; they get "super" excited about some things like anyone else; they are made uncomfortable by certain things. The same in many ways as those who are not on the spectrum. But different in how they express themselves and how they communicate.

As kiddos on the spectrum learn to communicate with the stereotypical world, they learn what they can and can't do for "stimming". The sad part is it's part of who they are. Some things are definitely not acceptable to do in public, however, except for those, most stims are "redirected" or"exchanged" to more acceptable ones. Funny thing is that stereotypical stims are generally outgrown, hidden or accepted. For example, tapping one's pencil, clicking nails, snapping gum, chewing the end of a pencil, having a "sleep buddy" (teddy bear or something), a pacifier, etc.

So I've come to the conclusion that we need to start looking past the exterior and see who's on the inside. See what makes someone else who they are.

From a mother's heart - please remember that we are all the same, we simply have different ways of expressing ourselves. We are all the same, but different.

Let's Go, Let's Go, Let's GO!

I have always been a morning person, regardless of when I go to bed, the minute the sun peeks into the bedroom... I'm awake. I've never been able to sleep when the sun is up, unless I'm sick or completely exhausted. In fact "sleeping in" for me before was sleeping until 7 a.m. Now however, when I wake up in the morning it's usually by the "prompting" of one or both of our boys. With some exceptions, the day usually begins anywhere between 4:45 and 6 a.m. I don't want to roll over, let alone get up out of bed. But, up I get... I really don't have a choice.

I may be a bit grumpy, but I'm not mad or upset... How can I be?

How can you be mad or upset at these beautiful, smiling faces. You just know they're thinking... "Good morning. Now get up! Let's get going!"

Our boys basically have one switch... ON. From the moment they wake up until the time they fall asleep, they are completely on the go. I love my boys and enjoy being with them, I just haven't figured out how to keep up. The interesting part is trying to find the balance between keeping up with them and getting them to slow down a little bit. They have so much energy, intelligence and such an inquisitive mind. However, with autism they can't always communicate what they want to do.

Along with ABA and school, we have been able to help Daniel and Anthony request many things. They communicate more in their own way than with direct requests. For example, Anthony wants to go for a walk so, being more verbal he will say "walk please?" He doesn't care what it takes to get ready, he wants to go as soon as he knows that "you know what he wants". Then he will "bounce" everywhere to remind you that it's walk time, it's walk time! Lets go, go, GO!

The next few moments seem to us, like he feels tortured... "Anthony son, ... you need shorts on, a clean shirt..." He still doesn't care, it's as if you can read his mind and he's thinking..."I have on a pull-up, my P.J. shirt, my shoes, why isn't the door open yet? Why are you still sitting? Let's GO!"

Daniel slows down only long enough to try to bring us along. We can never seem to get things done quick enough for him, he always wants to be onto the next thing before he even finishes the first. Daniel is mostly non-verbal even though he knows many words, most are approximations, and he can't seem to get through to us quick enough. We're overjoyed when we can make out what he has to say, but if we can't seem to understand, he's learned to get help by saying "up please" or "follow please". Then he will lead the person to what, or where, he wants to go. Once we figure it out we say the word(s) and have him say it a few times. Then he's off and running again.

Monday through Friday the boys (in the summer) have ABA (Applied Behavior Analysis) 4 hours a day. They have a 2 hour session followed by a half hour break, then another 2 hour session. After that, it's "our" time. Our time basically consists of snack, play, errands and/or (lately) nap time. Even with medication for ADHD, the boys still have plenty of energy and "bounce" around a lot. I don't remember ever having as much energy as my babes do, and to be honest, I wish I had half their energy.

INSIDE or OUTSIDE PLAYTIME...

WALK TIME... Wait... Who's that?

MOMMY!  (That was my favorite walk recently)  

My babes remind me of when I was young, summer was the greatest. We did what we had to do when mom and/or dad said it had to be done. We ate breakfast, did our chores, went outside to play. You came in to use the bathroom or eat. Then you were right back out the door. You stayed outside playing or talking with friends until it was dark. Then you were in for the night. You would watch a little T.V., take a shower and were off to bed. The next day would be the same thing, until school started. No clocks or schedules, nothing to do but what you wanted (for the most part). Just play. Play with all you had until you got bored. Then find something else to do and give it all you had.

I think God did something really good when he made us the way he did. We are born knowing nothing, living instinctively. Then, as we grow we give it our all to learn and play, not hindered by anything... until we start to get some experience. Watch kiddos on a playground sometime, they aren't afraid that they'll slip because the grass is wet - they still run "all out" for tag. They aren't afraid that there could be poisonous spiders in a bush - it's a great place to hide for hide-n-seek. They have that innocent curiosity that says: live, learn.

One difference I've notice between ASD (Autism Spectrum Disorder) and stereotypical kiddos is: kiddos on the spectrum hang onto the innocence longer. For better or worse, it's all about fully applying yourself to whatever it is you're doing. Schedules don't matter, the clock doesn't matter. It's all about living in that one moment. It's about constant forward movement. Not becoming stagnant where you are. It's giving 100% of everything to whatever you are doing at that point in time.

From a mother's heart - We all need a little more go, go, go. Give that 100% into what you're doing. Put your heart into it.

What Would You Do?

What if we lived in a world that was perfect?   Everyone got along and looked after one another.     What if we lived in a world where there was no violence?   None.    What if there was nothing harmful the environment?     What if no one ever got sick?     What if? What if? What if?

My absolute favorite what if...:

What if there were no illness or disorders?    No ASD (autism spectrum disorder). No ADD or ADHD. No cancer. Etc. etc. etc.

Imagine starting a family, having babies and not worrying about anything. Nothing to immunize from, no special diets needed, no worry of illness or disorder. How cool would that be? Young ones learning easily how to communicate, make friends and enjoy the people, and the world, around them. But, as we all know, there is nothing perfect in this life. You might be blessed enough to get a "glimpse" or "taste" of perfection on a rare occasion. Though we could easily be lost in the "what if" question, the ultimate conclusion I've been coming to is... perfection is in the eye of the beholder, "so to speak". 

I watched a documentary called "This is Autism", (for about the third time) and at the end the gentleman asked the parents, "if you could cure your child of autism, would you?" (paraphrased). I was kind of surprised by one mother who emphatically said "No". In the 3 seconds it took for her to compose her answer, I thought "how can you even think to say that?" Then she explained that out of all her children, her autistic son knew and did things that none of her other children ever did. He did things that totally amazed her and showed her just how special he was, she was very proud of him. I was so amazed. I had never thought about it that way, I had always thought how much easier I thought it would be for them. I know all of our children are special. I know they all have great potential. I know they super smart. I am always amazed at how much they teach me. I had simply never considered "that" answer before. It definitely made me pause.

Another thing to consider is: if we could indeed "remove" or "cure" the autism, it would change the person they are. So then... What would you do? Since we know that we cannot currently or "cure" our kiddos of autism, it's nice to be reminded of what's truly important. So, instead of thinking what you'd change, perhaps think of what you wouldn't.

Please always remember:

From a mother's heart - Even though my boys are autistic, I know they're smart, wonderful and special. I now ask myself on a regular basis... would I cure my children of autism if I could? What would you do... what a truly great question it is.  

Happy, Happy, Joy, Joy

Every so often you have one of those days when everything seems to fall into place. Not that everything goes right, but even if things goes astray, it doesn't bother you. You can smile and be really pleased happy. Everything is taken in a good way, even the negative things roll off like water on a duck. It's a great day overall. It's really too bad these days don't happen too often... or do they?

Do these days happen more than we think they do? If we asked our autistic twins, and they could answer, I believe they would answer - YES! Just watching them play, interact and simply go about their day, you would hardly ever guess that they'd be bothered by anything. (Unless you saw a meltdown or episode of course). They have been such a blessing for us, we have learned to see things from a whole new perspective with and because of the boys.

The 1st picture above was taken at our local children's hospital on a night when Anthony had gotten so sick he was throwing up, his fever had gone up over 104*. The doctor confirmed that even though the flu test was negative, he was sure he had one of the flu's not tested for. By the end of the visit Anthony had a few juices and was all smiles. We could tell he still felt lousy, but he was smiling all the way home. Even as he fell asleep that night, that smile was still there. The 2nd picture is one where Daniel, after being told several times to stop "clearing off" the shelf (throwing everything on the floor), decided instead that he was the one who should be on the shelf. Instead of getting upset because everything was on the floor, I grabbed the camera - definitely the better choice.

Happy, Happy Joy, Joy

Growing up, we weren't "suppose to": play in the mud; play with water (except when and where it was appropriate); walk through puddles (especially don't splash without rain boots); the list goes on and on. As adults we learn that some of those "childhood no-no's" were for our own safety, while others were more about our parents not wanting to deal with the aftermath. So my philosophy is: "dance in the rain, jump in the puddles (with or without rain boots)". Live, learn, enjoy and love.

As we learn more about ASD (autism spectrum disorder), we've come to realize that everything we can expose our boys to (that won't harm them of course) will only help them grow, us too. The autism makes it more difficult to explain some things to the boys, they are definitely ones who learn by doing instead of learning by simply being told. Because they are so "sensory", they need all the different sensory input they can tolerate. It helps them develop their own senses, find what they can and can't tolerate, etc.

We also don't force them to "try" anything, but we do give them several opportunities to try something. They usually become curious enough to eventually try something, food or other. Probably 5 out of 10 things they will try over and over again. This allows them to try new things and helps us to evaluate what's important when we set "rules". So, don't just stop and smell the roses, inspect them, feel them. Walk on the grass (unless it's someone else's and they've posted not to).

From a mother's heart -  If you can't dance in the rain, at least jump in the puddles and:   Find the "Happy, Happy, Joy, Joy" in your life

Naps, Disruptions and Senses

Two very tired boys makes for a... quiet afternoon. Nice in some ways, however, for those with kiddos on the spectrum - a little quiet in the afternoon can make for a very loud and energized little one in the early morning hours, and I mean early hours. Add to that ADD or ADHD and you could be in for an early wake up call (1 a.m. , 2 a.m., etc) that, like the energizer bunny, keeps you all up into the next day. At least until the kiddo(s) drop again from sheer exhaustion.

Between potty training, ABA (applied behavior analysis), appointments, errands and 4th of July, we've been going non-stop for the past 3 weeks. The hardest part for us is trying to make a "temporary change" in our schedule. As any one who has dealt with ASD (autism spectrum disorder) can tell you, schedule changes can cause disruptions, sometimes pretty intense disruptions. Especially if the one on the spectrum isn't having a good day to begin with. In fact, that is one thing that autistic kiddos have to learn, a form of flexibility that intentionally teaches them they aren't always going to know what will happen next. It messes with the "sameness" they are most comfortable with. I imagine it to be pretty frightening. One thing we do is to at least use familiar phrases when we do things that are not on the "schedule". For instance, if we are going to a store, we call it "going on errands". If we have an appointment, we say "so and so" has an appointment with "xxx"...  We will say the same thing every time, no exception. We try to take the same way to familiar places and it seems to comfort  them. If the place is not familiar, we will remind them every so often where we are going, and point out something around us, like the trees or something.

Imagine having your senses challenged just to understand and communicate with a world that isn't consistent. Then imagine having the comfort of a "set" schedule, which allows you to have some order to your day. And then, once again imagine having that comfort removed without so much as an explanation as to why. Or maybe with an explanation you can't understand and have no choice but agree to. Kiddos on the spectrum generally need a certain amount of "sameness" in their lives. They need a schedule to keep things consistent. Not all little ones that have disruptions in their day will meltdown, but as the day progresses and tiredness settles in, the less tolerance they have for unexpected events.

For those with autistic kiddos, friends or someone else you know who has ASD, remember that change of routine is not as easy for them as you think it may be. It may be no big deal or it could be a very big deal. You never know what the repercussions may be. It could be anything from a small meltdown to disrupting sleep. It can disrupt the day for a few minutes or carry over for several days. The hardest part for us is getting back to routine, as if the boys expect or anticipate another interruption in their schedule.

Some people are helped by being told in advance that the schedule will be disrupted, so they can get use to it. Some kiddos benefit from having a daily schedule which shows that something different is being worked in. Still others find that they have to deal with every disruption individually.

From a mother's heart - it doesn't matter what your schedule may be, knowing in advance how your kiddo will react is half the battle - it can help you anticipate what they will need to make for a smooth transition.

Potty Training? Continued...

I sit here today... tired exhausted. After two full weeks of potty training, Anthony first, then Daniel.

• Every morning as the day begins, the boys sit on the potty until they go. Sometimes it happens within minutes, other times it seems like we're in the bathroom forever.
• Day 1 for each of them... pretty good, not perfect, but very encouraging.
• Day 2 - us "Let's go pee-pee in the potty, and you get to play with your toy..." (one specifically picked out for motivation) each one on there respective 2nd day, "oh, you mean yesterday wasn't a game? Well then... let's see how long I can hold it..."

I had help from ABA (Applied Behavior Analysis) for the 1st 3 days with Anthony, and then for Daniel - to get them going (so to speak). Somehow I think the boys initially saw the toilet like this:

So maybe they were a scared into complying???

Now I think it's more like this:

I have to admit, I'm not sure at this point who's training who. After all, for the last 5 years they've used a diaper as their "personal outlet" and now we're asking them to change that. They absolutely love the "big boy" underwear, however, they really don't care if they get wet or dirty. They fight against having a pull up over the underwear before going somewhere. They're not absolutely thrilled to have the nighttime pull ups either. But, we're getting there.

It's very interesting how the boys have handled potty training at this point though. Being autistic they need a certain amount of a routine every day. Even if they have a free day, it has to have certain things that are the same every day. They have to watch certain shows on T.V. for a short while, (around 7 - 8 a.m.) or at least have those shows on - even if they aren't watching the T.V. (Usually the shows they "sort of" watch before school). They have to have their medication in a certain order, at a certain time, if we forget or are late - they let us know. They have to have certain foods every day and access to others that they may want to "choose" from. So, we've worked "potty time" into the routine - I'm very glad that most days they have taken to it very well.

The kiddos I've heard about (read about and talked to other parents about) - say that the only difference between an ASD (autism spectrum disorder) child and a neurotypical child is the amount of repetitions it takes to get the hang of using the potty. I've also noticed that there is a certain amount of stubbornness that goes with this whole new adventure (which I think all kiddos have - not just autistic or neurotypical).

All in all the potty training is going a little better every day. We've have a few times when the boys have actually initiated going to the bathroom. The best time for us has been first thing in the morning, the boys are much more receptive to "that" room. Then as the morning progresses, I get help from the ABA staff to keep the boys on task. Evening and weekends are the hardest. You know, when you need to do the 100's of other things that didn't get done during the week. Occasionally I get some help from my wonderful sister, a total Godsend, when it seems like I can't take anymore - she finds a way to come and help.

From a mother's heart - God Bless all of you who have already gotten past potty training - I never realized how challenging it is. For those who are my brothers and sisters in potty training right now - Hang in there! For those who have yet to get there - good luck and just look forward to the prize...  NO MORE DIAPERS!!!