Ugh! As if...

If you look at my screen shot, you'll see one of the most detested exercises of the special needs parent.....SKILLS ASSESSMENTS.  A never ending questionnaire of "Can your child do this...?".   This particular skills assessment was the longest and most thorough I've ever answered.  I spent 5 hours on it.  Applause is appreciated.

Skills assessments also indicate I'm on the move again.  A new therapy center and new schools for both of my kiddos.  I wish I could be one of those parents who just moved to a house they liked and put the kids in whatever school they landed in.  It's just not me.  I have this compulsion to try and do the best by them.  In everything.  I know I fall short, but I try. 

Epic Ride

Bell Center Road, Washougal, Washington

The seasons are changing.  Spring is turning into summer.  School is winding down and so are my son's therapy hours.  We are only driving to Portland, 3 hours a day, for 3 days a week now.  This gives me two days a week to take long drives with him to maintain some kind of consistency.  He calls them "Epic Rides."  This season of my life, too, is winding down.  The children are getting older and the need for more financial security means I will be returning to the 9 to 5 shortly.  Autism is expensive.  I've driven over 100,000 miles over the last 4 years to therapy.  Gone through 2 vehicles.  And this doesn't include the actual therapy itself.  It's a lot to bounce back from.  In the meantime, while I wait for the ability to take a job opportunity, I am enjoying every moment I can with my children.  Hug them a million times a day and tell them how much I love them.  Because I do.  The road of life is beautiful.   Today it was in Washougal, Washington.

Commuter and Communicator

Sunrise.  Waiting for my commute to begin.

Every day begins for my family at about 5am.  I have to get 2 children and myself ready and out the door, lunches packed, by 6:45a.  That is when my twice daily commute to my son's therapy in Oregon begins.  Sick of radio, I have recently begun listening to podcasts.  Some are funny, others thought provoking, but I heard one, the other day, interviewing this gentleman who wrote a book about his findings interviewing special needs parents.  I'd give you his name, and the title, but I feel it's getting enough press and I'm irritated enough with his comments on this podcast that I don't really feel like promoting it.  Basically, he equated his sexual orientation life struggles with that of special needs.  He also suggested that, "in a fleeting moment," he was ready to join the special needs parental ranks when his baby showed POSSIBLE signs of physical impairment.

I have no words.

First off, he, himself, could walk, talk, communicate.  Many special needs children can't do 1,2,3 or more of these items.   The struggles he describes are no more equivalent than every other person in the world's "struggle".  Secondly, it was profoundly naive to suggest that in that FLEETING moment he'd be proud to be in our special needs parenting club?  Really?  I'm glad he likes special needs parents, but he doesn't know what's involved.  I'm trying not to be over-sensitive but seeing as he's making money on the subject, I feel I can be critical.  Unless his child turned out to be special needs, then I take it all back.  But, it wasn't presented that way.   It was presented as gay struggles = special needs struggles, ergo, he knows what it's like.  Nope.  They are not equal.

All of us in this life have a different story.  None of us have the same struggles, the same health, the same issues.  Giving press and promoting such ridiculousness only underscores the blatent sensationalization that goes directly into aligning special interest groups.

Rant over because I have children I need to feed.

What To Get The Autistic Child

Note: I wrote this in December and was apparently too overwhelmed to publish.  Maybe it can be of use to someone in 2016?

The holidays are happening again and I am getting asked the age old question, "What should I get your child?"  Hmmm.  Good question.  I don't even know.  So I Googled "gift ideas for Autistic children" and looked around.  Autism Speaks has product links, various toy stores have lists and links, and then I clicked on some website....like "cafemom.com" something or other.  It was giving advise on "gifts to give that Autistic kid on your Christmas List."  I honestly have no words for that.  It was such an uninformed, idiotic title.  What do you get any other neuro-typical kid?  Oh, things they are interested in!  This is no different.  Okay, so there might be a couple of things that are different that you might want to consider but "that Autistic kid"?  As a parent, it stung.  Ow.  At first I wanted to contact them and tell them I was a parent of "that Autistic kid" on the list and give them an education on how they could better approach the subject, but I didn't.  I decided to offer my suggestions to the Google Gods instead.  A few words before my ideas...

First, Autistic children do not differ in neuro-typical children in terms of want.  Do not minimize their inclusion in the holiday and gift giving process because they cannot speak or act uninterested.  The very nature of them being Autistic implies they aren't good at social cues, facial expression, and/or verbal communication, etc.  So just keep that in mind.  Second, the parents of Autistic children vary in their parenting styles and therapy choices.  For example, with my child, I opt to challenge him, broaden his experience by not enabling repetitive behavior (stimming).  I steer away from preschool toys (which he LOVES and stims on) for more age appropriate choices fulfilling the same "LOVE" requirement.  So talk to the parents.   Third, and keep this in mind, the very nature of Autism and it's repetitive choice pattern kind of means a lot of the same kinds of toys at Christmastime.  For a parent this is overwhelming and, actually, it overwhelms the Autistic child as well.  (I actually had one Christmas where my daughter just sat for 15 minutes staring at what Santa had brought.  I didn't know it at the time, but she was overwhelmed.)  Did I already mention, talk to the parents?

1.  Any toy that physically engages the child is good!  Large bounce balls, small therapy balls, swings, balance beams, etc...
Autism Products has a lot of these items.  Browse for ideas, follow up on Amazon, etc for price comparisons.

2.  Toys with movement or educational toys.  Fat Brain Toys is my 'go to' at the first of the season.  There are a lot of non-electronic choices there and they have a broad spectrum of toys for special needs.  Look for things with movement like marble runs, disc rollers...it's why hot wheels are timeless.  The cars roll and move down a track.

3.  An eWriter.  BoogieBoard is a brand of ewriter.  I think this is the coolest thing.  My kids love them and it's fairly inexpensive (as electronics go).  It's probably more of a grandparent-grandchild gift, or close relative in terms of expense.

4.  Dominos.  They are tiles, they have dots, colors.  You can line them up and knock them over, or you can actually count the dots and play either way, they store relatively easy.  Dice and playing cards also go in this category.  It depends on the child.  Ask the parent.

5.  Cash for Savings.  This is probably the most useful.  Many parents are constantly being told to plan for our child's future.  But the expenses of the present don't allow a lot of luxury to save.  Since my children don't really want much, relatives often give money.  I have opened savings accounts for them, that way the money will be there in case one or both (I pray) goes to college.

6.  An Activity.  My son LOVES bowling.  He won't sit in a movie theater and restaurants can be challenging, but throwing something and knocking a bunch of stuff down is right up his alley! (pun intended) I realize few will do this, but maybe grandparents, aunts/uncles may consider.

7.  Magazine subscriptions.  A subscription to Highlights, Scientific America, or other magazine featuring their interest is a phenomenal way to get a child excited to walk to the mailbox and get a little exercise.

8.  iTunes or GooglePlay card.  Check with the parent as to which would be more appropriate.  It depends on the device.

9.  Art supplies.  Check with the parent so you know the skill level and ability of the child.

If you read this and are actively TRYING to find a gift for your Autistic loved one, I applaud you!  It gets exhausting trying to explain to people that you have to apply the same gift giving strategy you use for any other neuro-typical child to the Autistic child.  It's all about their skill level and interests.  Which is what you have to find out about any other child.  I hope this helped someone out there in WebLand.

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