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!  

Who Really Has the Special Needs?

My question actually stems from a "pet peeve" (Merriam-Webster.com says - pet peeve - noun:  something that annoys or bothers a person very much). I have a problem with people who complain about people with "special needs".

During the transition to the new pass at Disneyland (which I still have major reservations about - but that's for another day), I heard and read so many issues with the fact that there was even a pass - I thought I'd scream.

Many of the comments I've heard and read included:

1. What makes "them" so "special" that they should be able to cut in line?
2. No one should get any special privileges.
3. My kid has to stand in line, so should everyone else.
4. My kid doesn't need a special bus, why should I pay for that with my taxes.
5. Why do they have special parking spots, especially for someone with a wheel chair... (this on really burned me up -not that the others didn't)
6. Why do they have a handicapped plate... they don't even look like they need it.
7. Special needs just gives them an excuse to get something extra.

I could go on, but I know you get the point, and have probably heard some of these ignorant remarks too. Anyway, I finally decided to address this topic as the mother of 2 special needs kiddos on the spectrum

I, along with many other parents I imagine, would trade anyone for a day in my shoes... so to speak:

10. Getting kiddos with autism up in the morning without the possibility of a meltdown.
  9. Trying to get my boys to eat something healthy for every breakfast, lunch or dinner.
  8. I would love to not have a kiddo that is a "flight risk" / wanderer. To not need a handicap placard, that we didn't need to park close enough to the store, because of the real possibility that your kiddo could run in front of a car because (s)he "bolts".
  7. For my babes to understand that being without fear is actually a "safety risk". That the stove is hot enough to hurt you, and still put their hands near it after almost getting burned countless times.
  6. To go to an amusement park and be able to stand in a line for more than 5 minutes without having a meltdown.
  5. Not having a kiddo understand that - not everyone who approaches them has good intentions toward them.
  4. Have a kiddo on the spectrum who is constantly "stimming" (self-regulating behavior) in order to be able to cope with their situation.
  3. To get a whole night's sleep - not to be up for hours on end because your kiddo(s) simply can't sleep and are wide awake.
  2. To not need several medications just to "function" appropriately.
  1. To have an age appropriate conversation with your kiddo.

I think that those who complain about special needs, are truly the ones with special needs. They need the special education to be taught by loving people how "special" - patience, love and most of all compassion are. They need to learn that if not for the grace of GOD - they themselves would be the one who lives with someone who is special. They just might learn that everyone in GOD's great creation is SPECIAL in one way or another. No one is greater than anyone else.

From a mother's heart - I yearn for the day when acceptance, knowledge and compassion is the norm.
God Bless!

Picky or Sensitive Eater?

One problem we have had, and many other families with kiddos on the spectrum have... picky eaters. We call them picky, but I think a more appropriate term would be "sensitive" eater. There seems to be at least 2 culprits responsible for food preferences for kiddos with ASD* (autism spectrum disorder), either a problem with textures or a digestive issue.

When the boys started eating baby food, we fed them the way the doctor recommended, one food for a few days and if there were no problems, introduce another one. We did this for each food and had no problems. They were great eaters, ate virtually everything (except the pureed peaches). They did great with new foods as they got teeth and new foods were introduced. They even liked broccoli - which shocked us. Everything went along fine until Daniel regressed, then he stopped eating most of the foods he had eaten before.

After talking to the doctor and being told that many kiddos develop their "taste buds" at this age, he was probably going to be a picky eater. We made sure that the few foods he would eat were on the "healthy healthier" side, and started giving him his vitamins religiously. I started looking online since I wasn't sure if he was "just" a picky eater or there was more to it. Some kiddos are indeed picky, while others have a  reason they are "not" eating something.

I found out that there are some very real issues that affect kiddos on the spectrum and will cause them not to eat. Gastrointestinal problems are among the most common medical issues with kiddos on the spectrum. (These issues affect many children, not just those with autism). Chronic diarrhea or constipation, IBS (Irritable Bowel Syndrome),  food allergies, malabsorption issues, GERD (gastrointestinal reflux disease), casein or gluten issues. The best advice for these issues, would be to have your kiddo see a gastroenterologist. For us it is definitely a case of: "if I knew then, what I know now", we would've taken both of our boys to a gastroenterologist a lot sooner than we did.

autism and G.I. (Gastrointestinal issues) addressed here:   
http://www.autismspeaks.org/what-autism/treatment/treatment-associated-medical-conditions/gi-disorders

malabsorption issues are addressed here:     http://www.hopkinschildrens.org/Malabsorption.aspx

Another issue for kiddos on the spectrum is SPD (sensory processing disorder) and can be another cause for "pickiness" when it comes time to eat. There are 2 different oral sensitivities: hypersensitivity and hyposensitivity. Each is addressed in a separate way, and the person can be helped by an OT (occupational therapist) to determine if it is SPD. (They can also let you know if other types of SPD are present and should be addressed). It should also be noted that not only kiddos on the autism spectrum have SPD, many others have it too and may not realize it.

http://www.sensory-processing-disorder.com/oral-sensitivities.html

From a mother's heart - if your have a kiddo with autism, or even a stereotypical kiddo, that seems "picky" - please don't force them to eat until you know why they aren't eating. It could be more than pickiness entirely.
God Bless!