A Simple Gesture Can Change a Life

Being mom to twin boys with ASD* can be difficult... to say the least. I know that I am blessed to have the support I do, to not have to go through this journey alone. My husband is always on and by my side... the boys' side. He supports our family in whatever way he can to make sure that we can do whatever we need to for our boys, and always without complaint. This allows me to be able to be a stay at home mom, researcher for us and those who read this blog. Together we go forward knowing that God will make a way for us to do what we need to. My mission is to do whatever I can to help our boys and let others know that they are not alone in this world... and especially in the world of autism.

You hear about all the bad things people do every day in the News... "So and so used a gun and..." later the news media is quick to make sure they let everyone know... "the person was mentally ill, or had Asperger's - a form of autism, or some other issue". Like these are the whole cause of why the person did what they did. Usually they find some issue and make it sound so dark that it insinuates the person just couldn't have helped themselves, or been helped either.

I would love to see the news do a segment on what it's like for someone with special needs on a daily basis. Stop asking why - someone who's been bullied for years - finally snaps and does something heinous. Do stories that will make people listen, and take seriously parents that complain about their kids being bullied. Help empower victims, to help boost their self esteem. Watch out for them if they aren't able to. Show people that others need help, encouragement and understanding. Maybe some empathy would keep a victim from becoming a suicide, killer or felon of another kind.

I've seen so many people in this world who would rather turn away than get involved with someone else's battle. To them I want to scream... Knock it off! What would happen if we got tired enough to speak up? Now I'm not talking about doing something that would put your life in danger. Though many people will do that without a second thought. I'm talking about little things... What if we all began to watch out for just one person who wasn't in our own "comfort zone" - just one stranger. What about helping the person in line in front of you, who is obviously short of the money they need - donate what you can to help them. Don't let them be embarrassed while you just stand there and they have to put back things. What if we asked, say one person a week, if we could help them with something? What if we tried to actually talk to someone who seemed to be struggling through something? Someone who was obviously sad or even lonely?

One of my favorite stories was written by John Wayne "Jack" Schlatter. It's called "The Simple Gesture". I first read it in "Chicken Soup For the Soul" (volume 1) and it's stuck with me ever since. Mary Robinson Reynolds has produced a short video for the story. You can see it here:

http://www.simplegesturemovie.com/

I think it would do us all good do "A Simple Gesture" as often as we are able to remind us how much a simple gesture can mean. Instead of magnifying the "bad" things in the world, why not try spreading a little good. Do something nice, just to be nice. Take an interest, show concern. Make someone smile.

From a mother's heart - take the time to do something nice for someone. Stand up for someone... Encourage others... Share information you learn, learn from information so you too can help. Share you!
Gob Bless!

*ASD (autism spectrum disorder); 

Dinner Anyone?

It's always nice to be able to sit down as a family and eat a meal together. It's hard for many families in today's world to make sure everyone is on the same schedule. Some kiddos have sports, some parents are working at dinnertime, homework, etc. There's always something that comes up that can distract a family from being able to dine together.

Many parents with kiddos who have been diagnosed with ASD have much more to deal with than just finding time to eat together. A lot of  kiddos on the spectrum have aversions to certain foods, and they are not being "picky" as some may think. Some have sensory issues with the certain textures. Some textures could be like having sandpaper in your mouth, or a slimy texture might cause the gag reflex to kick in.

Other people with autism have issues with their digestion and this can cause certain foods to make it uncomfortable or even painful to eat. Many people on the spectrum have a very "high pain tolerance" (don't feel pain until it reaches a high level), which can make it so certain foods "build up" before they realize it makes them sick.

We've found that our boys won't eat regular yogurt, but they love the Gerber Graduates Yogurt Melts. They will eat some french fries but not mashed potatoes, or baked. There are other things like this, so we've figured out that it's the texture, not the actual food.

This will probably sound odd, but I admit I'm kind of jealous of the way many autistic kiddos are when it comes to eating. They listen to their bodies. They don't care that it isn't "lunch time", they just know that their body is hungry and it's time to eat. They know what they want (usually), and they don't tend to overeat. When they are hungry - they eat, when they are full - they stop eating. Because of this, when our boys let us know they are hungry, we provide as many healthy choices as we can for eating. They are slowly building their own food menu as time goes on. When given the opportunity, they will eat several small meals throughout the day.

We have learned through trial and error to make our meals basic. We don't make anything "special" just for them, at least not at this point. We make what we eat on a regular basis. We make a meal that will feed all four of us, but we also let the boys request what they want for supper. We have them sit with us at the table with us (even if they have eaten earlier). Then we will make a small plate with the food we are eating, and allow them to try it. They are more apt to try it by watching us eat it, and they've increased their diet options since we started doing this.

Some ABA providers also have eating programs that can be incorporated into the kiddos program. All of these things used in concert can help get a kiddo eating. We just need to watch and learn from our babes what they need. I highly recommend checking with your pediatrician if your little one doesn't eat properly. What we did was check with the:

1. pediatrician
2. ABA eating program
3. GI - Gastroenterologist
4. OT - occupational therapist

If we need to go another step at some point it will be with a dietician. Some other people will go to a psychologist as well, but I have a hard time going that route since our boys are mostly non-verbal. Like many things in the world of autism, it's observation, interaction and trial and error.

We were raised to eat everything that was put on our plate, we know that is not the right mentality to have with food at all. Even if we "carried on" that "tradition", that's not something we can do with our kiddos. We are learning to understand that they may not be hungry, have a sensory issue or an intolerance to certain foods. We no longer "push" our little ones to eat if they aren't hungry, and we don't "force" any foods on them. We do provide several healthy options for them and give many opportunity's for them to try new foods. So far, it's worked.

From a mother's heart - I like to think that we all like to try to eat better every day. Our bodies were designed to need and use certain foods for energy and growth. All we can do is provide different options for our little ones to choose from.
God Bless

ASD (autism spectrum disorder); ABA (applied behavior analysis);

Family Time

I've heard of many families that try to have a "family night" or "family time" together. I love that idea and think it's one of the best things you can do for your family - spend time together for no reason other than to be together and have fun. When we brought the boys home, I dreamed of all the things we'd do together someday... play sports, watch movies, play games, maybe, just maybe - talk about girls they like, etc. Since being diagnosed with ASD*, those thoughts have disappeared changed. We now hope to do those things together, more than expect it. We try to do things again and again because 1 day they will play something and others they won't.

We've learned that just because they have autism doesn't mean they can't ever do those things, it just means it will be in their way and their time, not ours. So we started with television and movies. First we watched Sprout (together) - they had great kids shows (not to say they don't now), then it was watched Discovery Kids, until they took it off our lineup  - LOVED that channel. We learned things on Discovery Kids, the boys would sing and dance to Hi-5! Now it's Disney Jr. the Channel. They will actually request (mostly Anthony - sometimes Daniel) shows on there. Don't get me wrong, they only get a couple of hours opportunity to watch television a day, and they won't usually sit there for an entire program. They bounce from one room to the next.

Then there are family movies, so many out there to choose from. Like many kiddos they find a movie they like and want to watch it over and over. I'm guessing that because of the autism the boys will watch a movie over and over, so many times that we had to get the digital copy and put them on their iPods. They will watch the movie so much that they can use the fast forward, rewind, or even the chapter selection to find a particular part. They will find the spot they want to watch from any point in the movie within seconds of starting it. Before I can even figure out where the story is at, they've jumped to the part they want to see.

Trying to go the movies can be very challenging for many people on the spectrum. The first movie we took the kiddos to was Cars2... they actually sat still with their eyes glued to the screen. I was speechless, after all I'd read and heard from other parents with kiddos on the spectrum, I'd expected them to need to run around every so often. We were ready for the potential meltdown because of the volume, or the feel of the chairs, the lights from the screen or any of the other things that can trigger one. We tried to account for almost any situation that might develop. We were so excited because we could tell the boys really enjoyed it.

Going to the playground, the park, the zoo or anywhere else outdoors takes on new meaning as well. They love to run (like most kiddos). Unfortunately since Daniel has elopement (wandering) issues, we can't let them run and just expect them to come back. So, we have to run too... and are they FAST! We make a point of going to playgrounds that are far away from the major roads, and have a fence if possible.

Leisure games are out in our house and educational games are in. We can sit down with the boys and get them help them (for now) to play basic color, counting and matching games. That usually only lasts from 5 - 10 minutes. They do love daddy time though - they are all boy! They can't go one night with having an intense rough-housing session with dad. I love it, to watch the smiles go from ear to ear - well let's just say my smile is just as big.

When we do things together, we try to make it as fun as we can - or at least as interesting as possible. I can only imagine what someone must think when they walk by us. Two adults totally focused on the kids, letting the kiddos lead the way. If they run - we run (well, my husband does - I have bad knees). If they try something new, we are there cheering them on like they are doing something for the first time. I think it's what helps keep us young - trying to keep up with 6 year old twins - and trying to relate on a daily basis. They help us "play" in a whole new way, as if play has more meaning than anything in the whole world. Because at that moment in time... it is.

 

From a mother's heart - Many kiddos with autism "live in the moment" (I think most young kiddos in general do), our job is to learn (or remember) to do the same. That makes for some of the best family time ever!
God Bless!



ASD (autism spectrum disorder);

Time to Change Medications

A lot of kiddos with ASD* will be medicated at some point. Sometimes for aggression, depression, ADD, ADHD, Tourettes Syndrome, or any of a number of disorders that can affect someone one the spectrum. Anytime spectrum kiddos are on a special diet; using vitamins and/or minerals; have set routines; or take medications in any combination - to help control issues that interfere with their living and learning, it can be called an "autism cocktail".

Like many people who take medications for a while, sometimes they will stop working the way they should. Sometimes they need to be adjusted other times they need to be changed all together. Also, it can be very difficult to find the right medications because there are several cross-over behaviors (the same behaviors can be attributed to several disorders).

I have heard many parents talk about having to use medications for their kiddos, both stereotypical and autistic, with varying results. Some have to try many different types of medications before finding one that works for them. Others find the right medication almost immediately. Then there are those who give up trying to find a medication because they have seen no success. Sometimes it's because a person needs more than one medication used in concert with another or others to get the right effect.

We were so happy to have the boys medications work from the first try. However, now we have hit the point that the ADHD* medication is no longer working... for either of them. We saw their doctor and hoped it was as simple as needing a change in the dosage. We tried the new dose over the Thanksgiving holiday, unfortunately it didn't work. They have been off the medication for almost a week now and we've noticed something we hadn't before... their personalities had actually been different when they were on the medication. Not because they would stay seated (at least longer than before) and focus better - well better than without the medication. We didn't notice at first, but their personality "shifted" - they actually acted different. They weren't as happy as without the medication, and they would get frustrated more often when the medicine wore off - which made them more "weepy".

Now it's time to look for a new medication. I really wish they could get away with no medicine at all, but for them, there really is not a choice at this point anyway. I've watched them work, both with and without medication, and it's like night and day. When they are able to focus better, they retain more information. This probably isn't new information for many people, but it kind of is for me. I am always looking for new information, new ways of treating things without more chemicals (when possible). But, I'm also realistic enough to realize that sometimes we simply have things missing in our bodies that need help.

So for now anyway, we'll work with the doctor to find something that will work and hopefully not affect their personality. (If that will be possible... and I believe it is).

From a mother's heart - I hope for a day when kiddos on the spectrum won't need medication on a regular basis... or at all. Until that day, we continue to do whatever we can to help our kiddos function to the best of their ability.
God Bless!



*ASD (autistic spectrum disorder); ADHD (attention deficit hyper-activity disorder)

What Do You See?

When I sit quietly and watch my boys, I find myself thinking, what do you see? How do you see things? What are you thinking? It's said that autistic children don't have an imagination, I'm not sure I believe that. Just because they don't play like stereotypical kids doesn't mean they have no imagination. We just don't see any imaginative play as we know it. Now, I'm not saying they do or do not have an imagination, I don't can't know.

Sometimes I'll try to get down on their level and see what I think they are looking at. Like a lot of kiddos with ASD, one of my babes is mostly non-verbal, he has some "verbal imitation" (words he'll repeat when asked) he'll use when asked a question. He has some manding (requesting) words he will use when he wants something, but nothing as far as conversational ability. The other twin has more verbal skills, but also doesn't have the conversational ability.

I'll ask them what they're looking at, always wanting... hoping... wishing... they would answer. Since they don't, I have to imagine - imagine what they see and might be thinking. Sometimes I'll offer what I'm thinking, which is usually met with (what I imagine to be) a knowing look like, "wow mom - you got it"; or they'll laugh or I definitely know I'm wrong when they look at me and walk off. 

It's still fun to get down to their level and try to figure out just what they see. To try to follow their line of vision and hope I'm looking at the same thing they are. I know from different things I've read that there are many different ways people see things. For instance, there are "visual thinkers" who can actually see how things work just by looking at it, or hearing about it. There are those who can "see" words, or "taste" colors, or even "see" music. Imagine being able to do any of those, I think that would be pretty neat.

Many of those who are on the spectrum and have found a way to communicate have told us that they have understood everything they ever heard. Many people that are autistic have incredible memories, some even have an eidetic memory (the ability to recall with vivid accuracy things that have been heard, seen or read).

http://www.wisegeek.com/what-is-eidetic-memory.htm

I watch our kiddos look at something for several minutes at a time, turning the object around and around. Staring intently on it, leave it alone for a while, then come back and stare at it again. Other times I watch them look at the surroundings from different angles, looking out the sides of their eyes:

I've tried to look at things this way, from a side view, and I've got to admit... it hurts my eyes. They also squint to see other things:

They have many other ways that they look at things: from laying on their side next to an object; laying on their back on the couch or a chair with their head hanging over; leaning over with their head on the floor - looking between their legs; etc. When I think there is no new view for them to see, they position their body in a whole new way.

From a mother's heart - remember to watch your kiddos, try to see the things they see, the way they see it.
God Bless


ASD (autistic spectrum disorder)

Busy, Busy, Busy

It seems that no matter what time of day, week, month or year... we all have our routines. Routines for home, work, school, vacation. Things keep us hopping, we tend to get and stay - busy, busy, busy. Not always a good kind of busy, sometimes it's the busy that interferes with the time you should be spending with those who matter most. Sometimes, for whatever reason, it can't be avoided.

This is the time of year when kiddos get time out of school for.. Thanksgiving break (one week for us); a few weeks later it's Christmas or Winter break (2 weeks and a day). It's a time when you try to get your kiddos to play and relax, then do something to take care of the boredom. After that you find yourself searching for things to keep the little ones entertained, busy.

For us, having twin boys with autism, it's so hard to keep them engaged. Usually by myself during the week, from the time we get up until ABA begins in the afternoon, we are busy. Busy, busy, busy. I have to keep them busy / entertained constantly or the boys will go "stir crazy". However, I still can't seem to keep them busy enough. Our little ones have ADHD as well as ASD, so keeping them engaged for several hours gives me a GREAT appreciation for their teachers at school.

Also, because they are on the spectrum we have to find enough activities to challenge them in many different ways. Academically, physically as well as the sensory issues they have. If any of these areas aren't worked on enough, the boys will not be tired enough to sleep through the night. It took a while to figure out that this was one of the things that could cause them to wake up. When they wake up in the middle of the night, it's usually anywhere between 1 and 3 and they'll stay up for at least 3 hours or more. The hardest part about it is they are UP - not drowsy, not even a "little" tired, they are ON.

They don't just "go play". They still get into things they aren't suppose to. They don't always play with toys appropriately. Our double-edged sword comes in the form of being very inquisitive, it's great because it makes them want to learn. However, they like to find out what makes something work, so they take things apart - things that aren't usually meant to come apart. So, even with baby monitor cameras they have to be watched almost constantly.

I am grateful when it's time for ABA to begin, not only do I get a break while the boys work, because I know they are getting some much needed direction. They work hard for their behavior instructors, not only because it is hard work for them, but because they need that challenge. I will work with them one on one when I can, but now that they're older they don't want to do the work with me. So I have to make learning a "fun game" to play with them in order to get them to show what they've learned in a natural setting.

Well, for now we will find whatever we can to keep busy, busy, busy - since every opportunity is a learning opportunity, we will look for every one we can find. Happy Thanksgiving!

From a mother's heart - there's an old saying... "idle hands are the devil's workshop". For those parents and caregivers to kiddos and adults with special needs, there isn't a lot of time to find out if it's true.
God Bless! 




ABA (applied behavior analysis); ASD (autism spectrum disorder); ADHD (attention deficit hyperactivity disorder)

My Muses

Whenever I sit down and really feel the need to write, sometimes I just can't seem to find the right topic. With so many thoughts and ideas on possible blogs... I don't know which topic to choose 1st. So, I'll look to my kiddos, they are my muses... my inspiration. If it wasn't for them, I would never have truly realized that autism was a world unto itself. That there are so many aspects to it, so many things attributed to ASD (autism spectrum disorder). That there are so many levels. I imagine that I would've written a different type of blog eventually, but maybe without the passion I have for autism awareness.

Ever since Daniel's first assessment and confirmation of autism, the whole world has changed for us. Because of this disorder, we look for any and all information we can. Anything to help them communicate with us and others. Anything to help them socialize, or at least learn social "etiquette" or manners. Whatever we can do to help them get along in this world, because it isn't about us... it's all about them.

When you get the confirmation that your child actually has ASD, you don't want to believe it... even if you already know it inside. You want it to be something else, anything else to attribute the behavior to... something curable. Unfortunately that isn't the case. So when you realize, that it isn't something fatal, at least now you have a direction to go in. You start to find out all you can. You read more than you ever have. You look online for any information, you get books about autism, you read blogs, you start to notice other people and kiddos. You see past the exterior - you watch behaviors. You look for others in the same position and start asking questions.

We can best talk to others about autism, because we ourselves have learned about it first hand. We learn by living it, then we look to educate ourselves by other means. Everything I have researched has been because of (a) one or both of our sons exhibiting certain behaviors; (b) someone else asking questions; (c) something being brought to my attention; or (d) seeing a story somewhere.

That's why I've become so vocal about autism... my muses:

Because of how special they are, who they are, how they are. They each have their unique behavior, even though they are identical twins. They each have their own "stims" (self regulating behavior), their own routine necessities, their own sensory issues. Like all those who live in the autistic realm, they are unique individuals with their own story to share. Their own lessons to teach.

From a mother's heart - It's not just about awareness or acceptance... it's about removing the prejudice and fear of someone on the spectrum.