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.

Finding Time...

Just when I think I'm going to be able to blog everyday, something comes up. No excuses, just an explanation to those of you who have followed what I write. I understand we're all busy, and some people seem to get everything done without anything stopping them. Something came to me a long time ago (about a day - 24 hours) that I've never forgotten:

It helps to remind me of what's important. I usually let "little ones" get in the way, but, isn't that what this is all about?

Sometimes I feel down because I can't seem to be able to write every day. There are times I want to walk away from everything that's going on, you know. Just escape to somewhere private and write. But those who have kiddos on the spectrum know how busy a day can be, and that's even when they go to school.

Every day is filled with chores, errands, and of course the new things that always seem to come up. No complaints, just observations that I suppose many people have made, anyone with children or even older people that they care for. I think this goes for virtually everyone who lives on this big, blue planet we call home.

So, please forgive me for not being consistent. I will do my best to write more often about things that we've learned about autism, and maybe other things too. As usual, please let me know if you have any topics you'd like to see with regards to ASD (autism spectrum disorder). I'll see what I can find.

Thank you so much for reading. It's nice to know that there are those out that have the same interest, and are wanting to find out all we can about autism.

From a mother's heart - God bless you all who take the time to make a difference in someone else's life. You Rock!!!

Family

Having someone in your family with ASD (autism spectrum disorder) makes you appreciate family, at least for those who family that are around for support. Whether it's for physical, mental or spiritual help. One of my favorite quotes is from the book "To Kill a Mockingbird" by Harper Lee.

“You can choose your friends but you sho' can't choose your family, an' they're still kin to you no matter whether you acknowledge 'em or not, and it makes you look right silly when you don't.”

What does family mean to you?

Merriam-Webster.com defines family as:   1. a group of people who are related to each other;   2.a person's children;   3.a group of related people including people who lived in the past.

http://www.merriam-webster.com/dictionary/family

Love 'em or hate... Close or far away... no matter what - they're the ones that God put you together with. Whether through birth, marriage or adoption, they are your family and...  family is family.

Then there's the family you choose - the people who become close, or closer,  than family. The ones who are there for you no matter what. Those who will "bend over backwards" to help you in your time of need. The ones who are there for you "just because" you need someone. These are the ones who become your "spouse", "best friend" or your hand picked "extended family". They are the ones who you can tell or ask anything of. If you're really lucky you have these types of relationships with your family members.

The stories that break my heart are the ones where family members are in denial that there are any disorders in the family at all. They are the ones who tell the parents, kids and/or caregivers that the kiddos "issues" are their fault. Or, and this really makes me MAD, those who say that the kiddos are just "the R-word" or has an ID (intellectual disability), the PC (politically correct) way to label someone with the R-word. Last but not least, family members who say the kiddo is just rebellious.

Take the pledge to "say the word to end the word" at:          http://www.r-word.org/

These type of family members really don't understand, or choose not too, what's really going on. Like it has something to do with them. It's almost like if they admit -a family member has autism then they are in some way at fault themselves. My dad raised us with the philosophy that "If you can't say something nice, don't say anything at all." Unfortunately not enough people live by this. I think it's even worse when they can't be encouraging to anyone, let alone their own loved ones.

From a mother's heart - we need to learn to be supportive of one another. Can you imagine what this world would be like if we treated everyone like family members - our favorite ones, that is.
God Bless!

That's the Point

ABA (applied behavior analysis) a great... treatment... behavior modification... behaviorism... therapy... whatever you want to call it, I call it "awesome". Amongst the programs (depending on the child's needs) are fine motor skills and manding (requesting). Both of these programs include "pointing":

- fine motor - the ability to control the fine muscles of the body - generally in the hands, feet and head.

http://www.healthline.com/galecontent/fine-motor-skills-2

- manding - requesting; asking for a desired object or activity.

http://globalnaturopath.com/index.php?option=com_content&view=article&id=99:manding-applied-verbal-behaviour-avb&catid=45:aba-tips&Itemid=29

Both of these programs (among other things) teach little ones a way to communicate. The fine motor helps to develop the muscles needed for pointing, coloring, cutting, and ultimately writing. This is actually the natural progression for kiddos in general, but for kiddos with ASD (autism spectrum disorder), it doesn't always come easily, or without prompting. Both our boys learned to "point" to things they wanted very early on, but once they regressed... they no longer requested things they wanted in a way we could necessarily understood.

Once we began working with our ABA provider, we learned to work to find the best way to reach and teach our boys. We learned that something so basic as pointing is something HUGE to kiddos with autism. We had been taught as children that it was rude to point. Now, all those years later, we had to learn a different way of thinking.

We've come to realize that we now have to look at all the steps that it takes to complete a process. Things we take for granted, that for us - come naturally. We don't think about all the "little" steps it takes to complete a process. A basic example would be: "pointing" - identity the object you are being asked to point at; figure out which finger is the "proper" finger to point with; straighten the finger; point directly to the object. Simplified, yes, easy... not always for someone on the spectrum.

Since autism is a neurological disorder, it's always good to be reminded (at least to me) of what this means. The neurological system, or the nervous system, regulates and controls the complete body. There are two parts to it, the Central and the Peripheral Nervous System. When the nervous system doesn't work properly it can affect the: eyes, ears, sensory organs for of taste and smell, and sensory receptors of the various parts of the body. Helping it to work properly can be a major task, or at least learn how to interpret information it receives.

http://medicalcenter.osu.edu/patientcare/healthcare_services/nervous_system/about/Pages/index.aspx

It's no wonder that kiddos with autism need to be specifically taught to do some of the basic functions we take for granted. Even those who learn some of these skills can lose them with regression and need to be "retaught". I know I'm grateful for all of those who've gone before us and learned what they have about ASD. That our kiddos - at least in the United States - are not longer institutionalized just because of autism.

From from pointing to speaking (if verbal) and identifying things, kiddos on the spectrum can and will learn if we can just remember to have patience. We must remember that most of the things we take for granted, must be "broken down" in order to teach someone with ASD. This can be as challenging for us as it is for them to learn. When was the last time you stopped and thought about the steps it took to blow your nose, throw kisses, what it takes to pick up a pencil and color or even get dressed.

From a mother's heart - all the little things we take for granted may be a challenge to someone else. Being patient and helping them learn those steps well, that's the point - isn't it?
God Bless!

I Love You - Unconditionally

Every now and then I find myself wondering what life would be like if we'd never been blessed by the boys coming into our family. How would life be now? I can answer that in one word... boring. Not for any reason other than the only way for me to answer that at this point is from, well, my current perspective.

Like many people (I'm sure), I've asked myself many times... if I could "cure" my boys of autism, would I? It makes me realize that the question is not an easy one to answer. There are many aspects of ASD (autism spectrum disorder) that are positive and many negative. Like everything in life, it makes you really think about your life, your loved ones and your family situation.

If I had a magic wand, I suppose I'd "pick and choose" between the qualities I thought were good and bad. After all, what other criteria would I have to go by? I'd get rid of the "meltdowns" -  I'd increase their speech... a lot. I'd give them great social skills so they could play with other kiddos, instead of alongside. I think next, I'd remove the regression they went through, so they would have continued learning all along. Then, just for good measure, I'd remove the "developmental delay" so they didn't have to "work" so hard on the other skills they need.

After all that, I'd remove any need for medication, and of course, I'd take away the SPD (sensory processing disorder). Then I'd take away whatever it is that makes my babes wake up in the middle of the night, an stay awake for hours on end - so they'd be able to get a good night's sleep.

I'm sure I could change many more things, but by this point of the "daydream" I realize that I've already taken away most of what makes my boys... my precious, beautiful, and special boys. So I start to realize that I am grateful that there is no magic wand. After all, if there was - wouldn't we all have the perfect children?   

I believe that we have all been fearfully and wonderfully made to be just who we are. That God created us all to be exactly the way we are. Who am I to think I could improve on his handiwork. After all, I know that nothing, absolutely nothing could change the way I love my children... unconditionally.

From a mother's heart - I have faith that we are right where we are suppose to be. You are loved unconditionally by the One who created you. You are special! You are right where you are suppose to be.
God Bless!

Trials and Blessings in Disguise

There are so many times when I hear how "blessed my boys are" to have us as parents. I don't want to make light of the comment, I believe we are all blessed that God put us together as a family. However, I get the occasional funny looks from some people when I respond that we are the ones who are truly blessed and grateful.

I have always been a blunt person who, unfortunately has a slight real problem with the "filter" between my brain and my mouth. I am usually a much better writer than speaker - I can get my point across much easier when I write. I have no issue with speaking up when it comes to rude looks, stares or comments made... if I feel it's warranted. Sometimes I am "moved" to just keep my mouth shut. I'm sure that every parent or caregiver of someone with any type of special needs kiddos are in the same boat.

As a parent, we are called to figure out many things as our kiddos grow. As babies - learn the cries in order to know quickly what your baby needs. Then you get to figure out their way of communicating to tell you what they want. You learn to "read" your child as to what they need, sometimes before they even know. Now, as a parent of a kiddo with autism, you are called to be a teacher, doctor, dentist, nutritionist, advocate, mind reader, body language interpreter, but mostly... a detective.

We know that ASD (autism spectrum disorder) is different with every child, even with identical twins, some issues are similar, many are different. The hardest part is filling these different roles and learning how to cope with them, then teach your child what you can to help them cope as well. We have to learn that "mommies and daddies" need time outs too. Then we can look at situations that have developed with "fresh eyes" and try to find a solution, if there is one". Then of course you have to try to figure a way to communicate with your kiddo, especially if they are non-verbal. Then you have to figure out how to spot the "trigger" for the meltdowns in hopes of stopping them before they escalate.

We learn (from them):

• to see things from a different perspective that we otherwise never would.
• that there isn't always a logical reason for something (to us), but is important to our kiddo.
• the way our senses work - who would of thought that our senses could be over-whelming to our own body? So we learn even more about our own senses.
• we usually pay more attention to our little ones when something's wrong. (Like they're sick, or upset, etc.) This allows us to become closer to our kiddos.
• how to really reach out to our children with autism, especially when they are none verbal to try every way possible to connect with them.
• how to look for ways to correct our children that don't involve physical means, but actually work
• to say what we mean, because most kiddos with ASD are extremely literal.
• that some of our kiddos actually show us what pure, innocent and complete joy is

I think Laura Story's song blessings says it all. Check it out if you haven't heard it or seen this video:

http://www.youtube.com/watch?v=1CSVqHcdhXQ

From a mother's heart - Every time we learn something new we are being let into, a little more each time, our child's world. Which to me is the biggest blessing of all. May we all notice the blessings and learn the lessons our children have to teach us.
God Bless!