Autism and The Greater Special Needs Community

I saw this link "The Problem With 'Deaf Person Hears for the First Time' Videos" posted by a fellow Autism parent who runs a FB page and commented "Inspirational Porn  What is it and how taking it out of context is not helpful.  All too often, we hear things in 5 second clips and this is not good for anyone.  Details matter.  Details matter a LOT."

So I read it the article.  (I even opened up a separate app to do it!)  And I understand why the author feels the way they do.  I am part of the greater special needs community because I am raising two of my own.  But I take issue with two things because I read about them a lot-and not just from this author: first, the accusation that people are trying to "fix" those with disabilities and two, the implied tone that the public at large is purposefully spreading ignorance about the disabled community at their own ego's expense.  

Let's start with the first point.  "Fixing" the disability.   There are many, in the Autism community specifically, that scream loudly at the top of their lungs that you should accept the disability as it is and love your child the way God made them.  This is entirely true.  However, throwing your hands up and saying "Accept it!" is every bit as ignorant as they accuse everyone else of being for NOT accepting it.  I drive every day, over 100 miles some days, to get my son the best developmental care I could find.  Does that make me a saint?  No.  Do I want pity?  No.  Am I trying to "fix" him?  Well, yes.  To the best of my abilities.  I accept he has Autism.  I accept that I will more than likely be caring for him for the rest of my life.  But I also accept my responsibility to educate him to the best of my ability, to help him be able to be as self-sustaining as possible because I know I will not be around for his whole life.  This is called "treatment."  It's what the medical community does.  It's what our bodies naturally do.  Heal.  Fix.  We're all broken to some extent.  We are all on a scale of imperfect and perfect.  I have to try.  I'd rather try than not. 

The second point, the public's general 'ignorance.'  The funny thing is that this is not unique to the subject of anyone's particular special needs condition.  It's a part of the human condition.  There's a reason they have the saying, "Ignorance is bliss."  Research is time consuming.  It's faster to read a headline than it is to open the dumb article in a separate app.  This happens with national headlines.  It's all informational porn as it is devoured as soon as it's prepared.  The more shocking, the better.  And it's more ironic that a lot of the special needs community spreads the very "inspirational porn"the parent refers to.  Sadly, we need that inspirational porn sometimes.  Let me tell you why.  There are those of us who get up at the crack of dawn because we have to get dressed and ready for the day while our children sleep-no matter how old they get.  We get them up, help them out of bed, take them to the toilet, prepare their breakfast, spoon feed them, help them get dressed, remember medications, direct other children to get ready, help them walk to the car, buckle them in, drive them to the destination, unbuckle them, help them out, walk them to therapists, teachers, etc..walk them out, help them back in the car, buckle them in whether they want to or not and this process happens many times during the day.  Going places is a struggle.  Eating is a struggle.  Pottying/diapering is a struggle.  While other children grow up, and other parents struggles change, yours stays the same.  Day in and day out.  Keeping a positive attitude is very difficult.  Keeping your own physical and mental health during such routine weeks, months, years is sometimes more than you can bear.  But for those of us in the special needs community, particularly high-needs, seeing someone triumph over a disability is like a victory in a war you wage every day.  Not a "normal" war.  But a survival-of-the-every-day-war.  So I get it.  And I get the need to share inspiration. 

I tend to get passionate about those who clamor for tolerance when they themselves have the tone of intolerance.  And I suppose I sound intolerant by being irritated on behalf of ignorant people everywhere?  I just want everyone to get along.  I just want special needs activists to be okay with those of us who are helping our children through everyday routines of living, no matter what the disability or medical condition.  We all have something.  We all have struggles and challenges.  Only education will help everyone see that bigger picture, not judgmental articles.

Bawk Bawk

Fun with Friends

I've been thinking about animals lately.  And food.  And where our food comes from.  Mainly because I am the chef, grocery shopper, maid, accountant, etc... you know, "MOM"....these thoughts and the $4.00+ price tag for eggs have got me thinking "chickens."  Several of our neighbors, or those who live along our road, have them and 7 of those chickens used to visit us regularly.  That neighbor finally cooped them up, but before then the kids liked to follow them around the property and the chickens were kind of nice to have around.  Maybe we should have chickens, fresh eggs, right?  I've heard once you have farm fresh, you'll never go back.  They say the more the birds forage, the better the eggs as well.  (This according to my research and discussions with my neighbors.)

So, this led me to various searches on types of chickens.  I had no idea some of these breeds existed!  The only chickens I knew were the mean white ones in my old uncle's coop or the headless ones flapping wildly, feet tied and hanging upside down from the clothes lines of a childhood friend's house.  Or, Foghorn Leghorn of Looney Tunes.   Well, I knew a little more than that, but go to My Pet Chicken.com.  It's a great website with pictures and all kinds of information on breeds.  I also recommend learning about culling your birds.  Ya, they don't lay forever, only about 2-4 years which means if you want to keep them as pets, you'll be paying way more their egg-laying worth in feed.  Which is okay....just make sure you have lots of property to start with, and like, only buy one bird at a a time!  ;)

But it's fascinating, each bird lays a different color egg.  Some hybrid-breeds are known as Easter-eggers because they have a gene that lets them lay blueish/greenish eggs.  The baskets of a mix of birds look pretty as an easter basket.  And you don't wash the eggs.  Egg-shells are semi-permeable and the natural "bloom" of the birds has anti-bacterial properties.  Another interesting fact...they don't require refrigeration and can last longer than store bought.  I'm not going to go into specifics here, I don't profess to be an expert, just an avid egg researcher at the moment.  

In case you're wondering, eggs don't have much to do with Autism, just in that as an Autism parent, you're always thinking about diet and what you're feeding your children, what could be helping or hurting and where your food comes from is always a consideration.  I'm just lucky enough to live where I can potentially raise my own egg-layers.

Spring Chickens

Boo!

School has begun, autumn is here and I am not ready for the holidays that are about to follow.  For those of us with ASD children, holidays are particularly stressful--changes in routine, meeting faces that are unfamiliar, outfits that may be uncomfortable, etc... all make for 3-4 months of what I call "Holiday Hell." (I mean that in the nicest possible way.)

A Typical Halloween:

The first meltdown is usually me.  The anxiety of what I expect, good or bad, often precedes any problems.  I think a lot of ASD parents experience that.  How can you NOT?  (Our children tend to be dramatic and very LOUD.)

The second meltdown is COSTUMES.  Heaven help me.  THE COSTUMES.  I have two on the spectrum.  My Aspie inevitably wants some abstract, obscure costume that no one will know or recognize no matter how well I duplicate it (look at some below); while my more severe ASD son will barely put a hat on his head let alone verbally tell me what he wants!  I figure I can't be the only parent out there with this dilemma so I created a Pintrest Board of the more sensory friendly costumes....those made of hoodies or other 'regular clothing' type materials, those made from boxes, or those that just involve turning a hair bun into a spider.  I've also included some pictures of costumes I've made over the years.  I hope this helps someone out there.  I'm grateful for every clever idea I've seen and if I have a clever idea or two, I like to share. 

The third meltdown is TRICK-OR-TREATING.  As you will recall: two on the spectrum, one high-functioning, one low-functioning.  One wants to go trick-or-treating, the other, just wants out of his costume.  HOW do I solve this problem?  I can't split myself into two people!  Fortunately, my daughter has had a best friend to go with the past few years while the boy has opted out all together and I can stay with him.

So how does one deal with or prevent the Halloween Meltdowns?  I have the following thoughts:

1.  Let your child know Halloween plans as far in advance as possible.  Even if they are non-verbal!  Use a calendar to mark off days, add pictures to the calendar if you will be in a different location (like grandma and grandpa's) to help them understand what is going to happen.

Obscure?  This was when we lived in Las Vegas.  It's a Nymph from Cirque Du Soleil's "Allegria"

2.  Do a dry run.  This includes costume wearing.  This may take practice.  Let them wear the costume around the house.  Act out trick-or-treating with different doors in the house and some cousins or siblings to model.  Some children respond to modeling behavior better than others.  Just do what you can, and what your child is comfortable with.  

Easy year - store bought Lightening McQueen

 3.  If they don't want to participate in the candy begging (neither of my children really eat any candy) it's okay.  Sometimes all they want to do is be around the other children and follow along.  Let your child be your guide.  My lower-functioning son doesn't want to trick or treat, but during the day he likes to be around the kids and their costumes.

A football fan and Las Vegas Card Shark (it's a stretch but it's Autism at Halloween)

 4.  If you are having an Autistic child over, be sure to save some space for him/her.  A quiet room off to the side where they can go if they need space.  Talk to mom and dad before hand....the room might need to be free of electronics, or expensive, easily breakable items.  Usually a room with lots of blankets and pillows that they can hide under and pile on top of themselves for pressure will help some of the children.  Again, ask the parents what works best.

Any costume with a box can be worn with ordinary clothing and no make-up.

 5.  Also, if you're having an Autistic child over, check with the parents to see if their child is on a special diet.  Gluten-free, dairy-free, etc.  It might be fun to include everyone in their diet world for a night.  -though I know this is a lot of work-  just talk to the mom and/or dad.

In this case, older sister steadies the box.  Rick wasn't ready to wear his just yet.  Maybe next year.

 6.  As far as Halloween treats for Autistic children, again, as I said, many are on gluten-free, dairy or casein-free, sugar-free diets.  So what I do are pencils, wooden puzzles, or anything else but food/candy.  It's pricey, but I want the holiday to be as fun for these kids as it is for others.

Another Las Vegas costume.  Cirque Du Soleil's Dralion Dragon

 7.  Limit scary stories and "scariness" in general.  Some of these children replay things in their mind, over and over.  Traumatic experiences have a far greater effect than people realize.

A cowboy without a hat.  A white shirt, shorts and bandana were all he would wear.

 8.  Just remember, Halloween, or any holiday for that matter, isn't for everyone.  But it is a fun part of childhood and hopefully all can enjoy a happy and safe Halloween.

Daughter's Parrot Costume 2011 - great because it essentially wears as a cape

Pterodactyl with working wings 2011

Spinning

Sandy River, Rhododendrom, OR

It's been a difficult summer for me.  Especially on the Autism front--as noted by my "Regression Depression" post.  But, hopefully I can start seeing the light at the end of the tunnel.  After a few months of regression, combined with obvious anxiety behaviors, I decided to start the process of getting my baby boy on medication.  We've only been on the drug about 4 days.  It's an anti-depressant and as a person with pharmacological experience, I have to say that I'm pleased we're going this route.  Even though they say the drug won't take effect for 4-6 weeks, I have read some documentation indicating that effects can be seen in Autistic children as early as 3 days.  I saw evidence on the FIRST day.  He was lethargic in the morning but by afternoon he was not hand-biting nor playing with himself (this is very notable).  The second day he seemed to have already metabolized therapeutic blood levels by morning as the hand biting resumed.  But it was gone again by afternoon and he seemed more mellow.  The third day he seemed to level out more and today is the 4th day.  So we'll see.  As a side note, I have noticed more spinning.  Which is something I haven't seen since he was 2.  I also asked him how he was feeling and for the first time he said, "happy."  

As one who doesn't believe in medicating due to behavior, there are some behaviors that demand medication simply on the basis of a bad chemical brain imbalance impairing quality of life.  I am happy with the results so far.  As a parent you're always second guessing yourself because in Autism there are no concrete routes of treatment.  You just have to do your best and do a lot of hoping and a lot of praying.  And sometimes, more spinning.  :)

Regression Depression

Regression man....it sucks!  And to make things worse, an appeal for more ABA has gotten me another rejection and another doctor's appointment with the 'ABA-doctor-in-charge-of-how-many-hours-you-get'.   I can't climb out of this regression depression.  The bad news seems to continually come.  I really keep trying to count my blessings but then I'm physically being pulled and tugged and my positive thoughts go out the window.  How many more years are going to be like this?   What am I doing wrong?  What have I done to cause this latest round?  The questions keep coming and the solutions are ever elusive.  All I know is that more work is ahead of us.  There is much to be done.  AGAIN.

Happy Autism Awareness Day!

I try and always post positive things going on in our little Autistic world.  Like, for example, I made thank you gifts for my son's teachers and therapists.   They are amazing and I am grateful they all chose to go into this field.  It's definitely not easy.  And I like to show my appreciation.  

But sometimes you wish people really understood how different your life is.   I guess having a day to say, "yes, we're an autistic family" gives you that chance.  Not that anyone REALLY wants to hear what your reality is, but it's nice society will acknowledge some of it today.   

Speaking of Autism and it's reality, I am looking to the future and am starting to build a manufacturing company.  My goal is to have a facility capable of training young Autistic individuals technical job skills. I don't know how long this will take, but my children are young, I'm hoping if I start now, it will grow by then.  

Oh, and if you would like to print out those thank you puzzle cards/tags like mine, I have a printable on my other website....  www.13shopnumber13.blogspot  or you can go to www.shopnumber13.com for more information.

Autism Awareness Day is my Thanksgiving

Autism Awareness Day is coming up, April 2nd.  And if you didn't already hear the battle that rages in the Autism Community about the CDC statistics that were released yesterday, you may find yourself witnessing a new trend emerging in the Autism Awareness campaign in response to Autism Speaks "Light It Up Blue" campaign; the "Tone It Down Taupe." 

I have a philosophy.  To each his own.  However, I think the T.I.D.T. people need to put their efforts into something more productive. That's all I have say about that.

I choose to stay away from the all of the drama and debate about Autism during the month of April.  Instead, I use this time to thank family, friends, teachers and therapists who work with and socially support my children.  This year my shop has made key rings that we will give to teachers and therapists.  I have made extra, and am selling them here.

Lego

I haven't posted in a while because I've been busy!   Driving to and from Portland one or two times per day takes a lot of time out of one's schedule.  It's been worth it though.  

Today my son and I played with Legos.  My son's fine motor skills still need work and Legos are great for working little fingers.   He hasn't been too interested in building much, but today I tried tying in his obsession with letters and numbers into the Lego build and I got much farther in terms of participation.  This entire set of letters and numbers were built with Lego set 6177.   So if you have an ASD child in need of fine motor tuning, grab a set and build!   It's fun!