The Sleep Factor...

It was another one of those nights... the nights that remind you that you no longer have the energy of a teenager. The night when, for whatever reason, the little one(s) wake up at 1,2 or 3 a.m. and are fully awake. If you have a kiddo(s) in your family with ASD (autism spectrum disorder) in your household, you know exactly what I mean - even if it's not a regular occurrence, or if your kiddo has learned to go back to sleep on their own. It comes with the territory that is the spectrum. You know that there is nothing you can do to get your kiddo to go back to sleep. Even though you try to get them to lie with you in bed quietly while you snuggle them - hoping that listening to your rhythmic breathing will someone lull them back to sleep before you, yourself do. Generally... not gonna happen. So you find ways to cope, to do whatever you can to speed up the process to help them get back to sleep. Usually, at least in our case, it's like a really, really bad case of insomnia... you all finally drift back to sleep about half an hour before the inevitable happens... the evil sound that is the alarm clock.

So that of course, leads to an "I'm so tired I can barely get out of my own way" day. We warn the teacher at school that they've been up since "X:00" in the morning. This will ultimately result in them having one of the following types of day: trying to fall asleep;

getting their "second wind" and being overly energetic;

or being over the top - in an aggressive way. If they make through school without any meltdowns, then it's time to prepare for ABA. We also let the B.I.'s (behavior instructors) know before their shift starts that the kiddos have been up since "X:00" in the morning, and keep a watchful eye to make sure things stay on course.

Once the day is about over and we've survived school, ABA and supper, we still can't take the chance on letting the boys go to sleep. We still need to make it through the evening routine, lest we take the chance on having an incomplete day (to the boys), which can ultimately create the possibility of them waking up in the middle of the night again. So, after dinner it's time for the evening walk, daddy's chance for alone time with the boys:

Then it's the wind down from the day, it's own routine - relaxing together - trying to keep the boys from getting their "second" or "third" wind at this point. Then we can really think about the possibility of going to sleep. If we can actually make it through the day, with each routine finished and all of us still awake, there's hope for a "relatively" good night's sleep  - but who knows what will happen if at some point - they just drop:

From a mother's heart - may you have a good night's sleep, and if it is disturbed, remember your not alone.

Just How Many Children Have Autism?

There's a study new that was released a few weeks ago that says many more school age children have some form of autism than previously thought. This is based on a phone survey conducted by the CDC (Centers for Disease Control and Prevention). The CDC's NSCH (National Survey of Children's Health) did a phone study in which they called many thousands of homes and questioned those that had a child on the spectrum. This is the result of the phone study: as many a 1 in 50 school age children are somewhere on the Autism Spectrum. Below is the link to the report from this study (which is the clinical report and very in depth for those who wish to see it)...

http://www.cdc.gov/nchs/data/nhsr/nhsr065.pdf

I heard about this new statistic from our local news, and have been searching for information on it since (about a week and a half now). Unlike the study done in 2008 that revealed 1 in 88 children are diagnosed with autism, this study was based wholly on parental data obtained during a phone survey. The 2008 study was based on information taken from parents, doctors and school records. I don't know where the numbers will go from here, but I do know that the number of those being diagnosed in the US is steadily increasing, as I imagine it is in other countries as well. I still can't believe the number of people out there that have absolutely no clue what ASD (Autism Spectrum Disorder) is. The hardest part for most families, regardless of what country they are in is... to get a proper diagnosis for our kiddos.

In the USA the psychologists use the DSM (Diagnostic and Statistical Manual) to diagnose ASD. I've read that some other countries may use it as a reference, however, I'm not sure if it's used to actually diagnose autism. The DSM gives specific criteria for diagnosing ASD (Autism Spectrum Disorder). The last major revision came around 1994 in the fourth edition. Now a new edition, the DSM-V will be released in just a few months, and some of the criteria will change again.

So, the question becomes, how many children have autism? I believe here are many, many kiddos out there that have yet to be properly diagnosed with ASD. There are some basic signs that should alert a parent (or caregiver) that there is a need to have a child checked by a doctor (who would generally diagnose for autism or other neurological disorders). Here are some criteria that we have found applies to many kiddos on the spectrum (any combination should cause concern enough to check with your pediatrician):

little or no eye contact     -     lack of speech (not talking)     -     walking on toes     -     repeating words, sounds or phrases out of context     -     not responding to their name
lining up toys, over and over     -     flapping fingers, hands or arms     -     spinning around without seeming to get dizzy     -     has what appears to be a tantrum for absolutely no reason
needs excessive hug (pressure) to calm down     -     needs routine to be the same     -     unstable sleep pattern     -     overly focused on item(s), studies intently
sensitive to certain textures     -     looking at things from an acute angle (not straight on)     -     appear to be in their "own" world     -     having skills, and losing them

The bottom line is that we must be constantly watching our kiddos to make sure they are meeting their milestones. Celebrating when they do, and LOUDLY asking questions if they are not. Pushing for answers if we are not being taken seriously. Our kiddos only have one shot at childhood, and one shot for early intervention should it be needed. The longer we wait to intervene, the further our little ones can slip away.

From a mother's heart - every day that goes by is another chance to intervene with your kiddos - let's not let it slip through our hands.

Routines, Schedules and Sensory Input

One week... that's how long the boys have had "intestinal distress", which basically means - there's been no school this week. The boys haven't even been able to have ABA (Applied Behavior Analysis) every day.

Without their daily schedule and daily routine, they are virtually lost. We have worked a long time so the boys know that we have "free days" on Saturday and Sunday. Not that we don't have a schedule, but they know there are a variety of things we could do. So we tell them what we are planning for the day, and remind them on a fairly regular basis throughout the day. But when they're sick or have vacation (at home), it basically becomes a week long weekend. They get very confused when the weekend seems to last a whole week. They need that visual schedule and daily routine that tells them what the next activity is. Unfortunately, at home we haven't used one because the boys know the "routine" for after school and on days off. (Though we have discussed using one before too long since they're getting older and there schedules will become much more filled up).

I have always been a "type A" person, or in other words, someone who has to have everything lined up so that I know what's going on. I had list upon lists to keep my day in order. I use to actually get upset when things didn't go as planned. I would plan my day out, to the smallest detail, based on what needed to get done. If anything was missed, it had to go on the "carry over till tomorrow" list. Trying to never putting anything off indefinitely. The boys have pretty much cured me of that. I now expect that things will change on a moment's notice (thought I still have my lists). That being said, I have a very general and yet miniscule idea of what my boys go through with the need for schedules.

I try to be as considerate as I can for the boys and their need for schedules and routines. I've researched quit a bit and found that almost everyone with ASD (Autism Spectrum Disorder) will need some type of routine, apparently in helps them to keep grounded. It helps them make sense of the chaos that they go through on a daily basis, beside learning about a world they don't understand, imagine being bombarded by: sounds, lights, smells, and other sensory input on a regular basis. Not like a typical person would be, but as I understand it, they will look at someone's face and see everything at one time. Not just noticing someone's eyes or lips, but everything stands out at one time. Meanwhile, they are hearing so many different sounds at different noise levels, and maybe smelling an odd smell they aren't familiar with. Many kiddos on the spectrum will study inanimate objects in detail, over and over. Some will study pictures in the same way. This is why they block out everything else in order to make sense of what they are seeing.

I know it may sound confusing, but just think about what the person with autism goes through every day. Even my niece with Asperger's needs a certain amount of scheduling when going out somewhere. If things are changed without her approval (so to speak) she will have an anxiety attack until. I can't begin to imagine what that must be like, to have to balance all of those things at one time. And I thought I could multitask. It's no wonder that when the day is over, and the boys are unwound and fall asleep, they are OUT.

From a mother's heart - keeping a basic schedule can help keep the family on the same page and a little happier too.
God bless.

Obstacles and Expectations

Have you ever gone to a public place (mall or a park) sat down somewhere and just - watched people. Every once in a while we will make it to a populated place, grab a snack and sit down and chat. The boys are generally involved in a snack of their choice and we find ourselves "people watching". It's pretty fun to try to imagine what people are like, what they do for a living, what their family is like and as much as I hate to admit it, wonder what kind of obstacles they face. It may sound odd, but I admit that it generally makes me feel better. Not because others have obstacles, but to think my family isn't alone, and things could be much, much worse. You see, no one has a stress-free life. Everyone has something that is a major obstacle in their life that they must over come, or learn to live with.

I will be the first admit that I have made many, many, many mistakes in my life. Some real doozies. I know my parents expected more from me, shoot, I expected more from me. I'm the one that had to "learn by doing" it myself. Does that mean that I was incapable of learning? No, I just learned in a different way. So, I wonder if the world has any balance between those who learn by hearing and those who learn by doing. How many of us "typical" folk bring on our own obstacles because we didn't learn our lessons the first time the were presented to us. How many of us followed someone else's example and totally bombed because we thought they had the answers, and it turned out they were just as lost as us.

I read an interesting article the other day about a study on "silly" actions" - if you haven't read it, please follow the link below. It's pretty interesting. In a nutshell these people took 30 typical and 31 kiddos with autism and showed them a way to do something. While going through the steps, the "instructors" would add "silly" actions to see who copied them (tapping a container lid twice before removing it). It turns out that the atypical, the autistic - not as smart as typical????? kiddos (yeah, right), less than a quarter followed the silly instructions - where as almost half of the typical kids did. Hmm. Sounds pretty interesting to me.

http://www.foxnews.com/health/2013/04/08/kids-with-autism-dont-copy-silly-actions/

So, what exactly are we expecting from our kiddos - especially those with autism spectrum disorder (ASD)? As some of you know, for the last couple of months we have been facing the annual "transitional" IEP (Individual Education Program) process for our boys. A "triennial" IEP also, with one of them. They are both being assessed to see what they've learned this year vs. what goals they were "expected" to meet. The triennial is more in-depth. Terms like "autistic like" behaviors (because the school cannot legally diagnose autism - even when they have the confirmed diagnosis) to I.D. (intellectual disability) have been batted around. I get so upset when a child (autistic or not) is label with possible I.D. when trying to where they will be placed in the school system. According to the school system and many agencies who will help the child physically, psychologically and financially:   I.D. (intellectual disability) basically means that the child has a "limited" scope, an inability to learn. (That of course is paraphrased. The criteria they use is "based on" the DSM (Diagnostic and Statistical Manual of Mental Disorders) which is the "bible" for psychologists when they are diagnosing.

I think something is seriously wrong with a world that can say one person is incapable of learning, when the fact is, as long as you function in the world you will learn. That person may not learn the way we "expect" them to, their obstacle may be that they don't appear to learn what someone else "thinks" they should. Does that mean we stop trying to teach them? The next time you find yourself "expecting" something from someone else remember, they have their own obstacles and expectations.

From a mother's heart - Please take the time to look at who you are dealing with and adjust your expectations so that neither of you will be disappointed.

Time to Learn and Grow

It's very interesting that many people with atypical kiddos (those not on the autism spectrum) generally expect there children to learn like, at the very least, an average child. They expect their child to learn at the same or similar rate to their peers.

Unfortunately many parents (or guardians) are expecting the same for their special education children. Yes, they may be delayed, they may have difficulties in some area(s), but they should at least learn like their peers with similar issues, right? Wrong! The plain truth is, ready for this, there is no average child  - (s)he does not exist. Neither typical nor atypical, there is no such thing as an average child. They may have things they do that are similar, they may learn at a similar pace, but the average child does not exist. We all want the perfect child - they don't exist either. All children are UNIQUE, SPECIAL and completely their own INDIVIDUAL. Just the way, I believe, GOD made them.

So, how can we expect our children to benefit most from education; growth in the areas they need; excel at life? School, trial and error, osmosis? The answer is so obvious, most of us miss it at first. Us. The parents, the guardians, the caregivers, siblings, etc. We are our child's first advocate and teacher. I'm not saying that we can teach them everything they need to know, but most parents who have the ability to be involved with their child's upbringing needs to be constantly watching. Watching for speech, for motor skills (touching, picking things up, walking, etc.) for all the developmental milestones they should be reaching. Don't freak out if they don't meet them immediately, the guidelines are just that, guidelines. But don't turn a blind eye because you don;t want to have a special needs kiddos.

We've heard it over and over again, everyone knows that we need to read to our children, help them with school work (if that's an option), talk to them. It is up to us to "figure out" what is going on. At the very least, we need to interact with our children on some level as often as we can. Talk to everyone else in their "circle", what are they experiencing with your kiddo. Where do they need help, assistance, guidance, praise?

This chart is a crude representation of the things that will influence our children when it comes to what they will learn. I learned this in a parenting class we took several years ago.I know I've missed some, but I think you get the general idea. Everyone our children interacts with will influence them in some way, whether it's obvious at the time or not.

Remember that no one comes out of the womb as a full grown person, with all of the knowledge and skills they need for life. We all start from square one. The world is ours for the taking. We learn at our own pace, we learn to appreciate certain things and people over time. We even need time to decide our likes and dislikes, our strengths and weaknesses.

We have a basic "time table" that we impose upon ourselves and our children as to what age they should "learn" this or that. So they can have their "skill set" ready by the time we say they are an adult. There are many schools of thought out there, but combining and figuring out an "average", the human brain does not become fully mature until... wait for it... 25 -35 years old. Yet we are telling our kiddos that by the time they reach 18 years old, they should have the information needed to "be an adult".

From a mother's heart - Early intervention is they key for kiddos with autism, and I think for everyone. We shouldn't expect Mozart's or Picasso's, but we can set them up to be best them they can be.

Speech and Echo-what-ia

Please forgive the extended interruption in the blog, I've getting ready for, and then we had a triennial and transitional IEP meeting. Then, of course, researching for this blog.

Many kiddos grow up and learn to speak very well. They learn language properly, how to pronounce words the correct way and how to converse with others in an appropriate manner. From different speech therapists, psychologists and research on my own I found out that there are basically three stages (there are 6 stages to language) to actually beginning to speak:

babbling (beginning of speech, nonsense - 4 to 6 months);
jargon (language that is not clear, babbling turns into non-sense speech - around 7 months to 1 yr);
speech :

• 1 - 2 yrs: continually developing language - begins to "chain" 2 words - begin asking 1 - 2 word questions
• 2 - 3 yrs: using 2 - 3 words to converse or ask for things (begins using k, g, t, f, d and n sounds) begins naming objects
• 3 - 4 yrs: using 4 word sentences or more, begins conversing with others on different topics
• 4 - 5 yrs: says most sounds correctly except a few like l, s, r, v, z, ch, sh, th - begins using rhyming words, naming some letters and numbers, begins using the same grammar as the rest of the family

There are many resources available to learn the basics of speech and language development - mostly clinical, but there are charts too:
 

http://childdevelopmentinfo.com/child-development/language_development.shtml
http://www.lpch.org/DiseaseHealthInfo/HealthLibrary/growth/aaslm.html
http://www.aaclanguagelab.com/stages

Many kiddos on the spectrum will have a speech or language problem of some kind. Some will be delayed in speech; some will regress and appear to "lose" the speech they've learned; and unfortunately some will never use speech as a way to communicate. I have searched and searched, and have yet to find any study done on the percentage of children with speech delays in particular.

There are a lot of those with an ASD (Autism Spectrum Disorder) who have echolalia. Echolalia (ech·o·la·li·a) is the repeating of words or phrases, as if echoing them. Echoing something the person has heard. There are two types of echolalia, immediate and delayed. It is believed that up to 75% of people on the autism spectrum have echolalia. Researchers believe that "immediate echolalia" (short term auditory memory) is something that is used as meaningful, purposeful communication. While "delayed echolalia" (long term auditory memory) and may be communicative or not, depending on the individual and/or the circumstance. This is based on the encyclopedia from the autisticsociety.org website, which is a great resource.

Speaking from experience, our twins both echolalic, there are days that they will repeat a lot of what they hear, other days they will only repeat certain things. It seams that there are definitely times when they are trying to communicate, and we have found that when they begin the "echo" process, we generally can't completely make out what they are trying to tell us. We will struggle to try to figure out what they are trying to tell us, but when we do, it's cause for celebration all around. Those are learning times for all of us. We can begin to understand what they want to tell us, and we can help them try to be more clear in their speech. Other times I think they just like the way it "feels" to echo a "special" word they've heard. The sensation of trying to say the different letters and hearing the different sounds.

From a mother's heart - take time to talk to your kiddos, whether they converse with you or not, they hear you and are learning every day.
God Bless.