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.

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!

Parent Teacher Organization

Face painting at PTO Picnic

Well, I've officially started it.  A Parent Teacher Organization at my son's School, Building Bridges.  I am getting us incorporated and more importantly getting us 501(3)(c) status.  There is a lot of paperwork involved and I hope I can do this on top of creating a business.  I have my plate so full right now I can barely think straight!  Busy is good though.  I seem to be happier when I'm working.

I have the best group of people on the Board, helping me with the PTO.  I am amazed at the enthusiasm and support these parents want to give the school and their children.  This picture is from the first activity the PTO arranged.  The ladies who did it are wonderful!

I'm so glad to be starting an organization dedicated to helping improve our children's education as well as support other parents of spectrum children.   I'm also very tired from the extra hours I'm putting into getting us non-profit status.  So I am ending this entry and going to bed!

Zoo Train

 
I wrote this in response to a statement another parent of an Autistic child made.  She was just saying how unjust it was that the Asperger population as a whole was overlooked as needing treatment.  She was wondering where the MLKs of the Asperger world were.  How we could get a grass roots organization going, etc...  I wrote this in response:

 "My daughter will be turning 9 this month. And, yes, it's difficult for me to watch the social deficits and know I've not the training or experience to clinically help her. Right now my 4 yr old son can only say a few 3 word sentences, if that and all of my resources have gone to him in the form of private therapy. I tried to get my daughter on a 504b, but I guess that's for more physical supports in a classroom. This next year I'm thinking of volunteering at her school and possibly running some kind of social program. I'm thinking like, a social tea at lunch, or even science club.....SOMETHING where I can be over there and watch her interact with her peers. At this point, financially, it's my only option.
As far as Asperger MLKs, (from what I've read) the Asperger community is diverse. There are a lot of outspoken Asperger individuals but most seem to be centered on awareness and acceptance. Which I think is fine, and wonderful and I agree and all that, but I have a daughter who cannot read visual cues, intonations, inferences and other socially aware "norms" and I worry for her future just as a young woman. It's a scary world out there and you need to have street smarts as a woman. For me it's a safety and quality of life issue. All of this seems to get lost in debates. But that is why I think the Asperger community doesn't have one voice. Just because of the diverse opinions regarding "treatment" vs "acceptance' vs "diagnosed levels" and who is considered Asperger and who is not. Some days I find it amazing we can even paint the diagnosis of Autism with such a broad stroke. There are definite characteristics and traits, and yet, all are so very different. It's hard to unify all of that even in my own mind. lol"

Rumor has it that the F.E.A.T. of Oregon collapsed under such debates.  I have no idea if this is true or not, but from the little experience I have as a parent of very different Autistic children, I can see how heated debates can easily spark.  Parents are stressed out, frustrated, have very little support for themselves and feel very passionate about their children and about the decisions they've made regarding treatment.  Also, heated reactions could be a matter of habit since so many of us have to continually argue for therapy with districts, family members or even a spouse or significant other.

So how do parents unify under such diverse circumstances?  Many parent organizations have been successfully created and run under such conditions, why do they succeed where others fail?  I'm guessing in "the people."  Man, I hope I can make this Parent Teacher Organization work.

Two words for how I'm feeling right now as a pro-active parent of an Autistic child......
zoo train.
(Which is actually very nice.  The Zoo's train in Portland.)

What's In a Name?

What's in a name?  Well, a few hours for these two.  I did them for the therapists at my son's school, Building Bridges.  It wasn't a difficult project, just the first project I completed on a scroll saw.  Thank heavens my son likes to play around where I'm working.  It's a much needed distraction and break from my every day.

Parent Involvement

I've been busy creating a Parent-Teacher Organization at Building Bridges.  I thought I'd be a member of 1, but several people showed up at the first meeting, giving me a lot of hope at organizing things further only to have the 2nd meeting not go so well.  The hard part is that volunteering is work; and with parents of spectrum children, they might not have the time nor the energy to do more.  I know I feel like I'm barely hanging on some days, so in some ways I can't blame them.  But, I'm pressing on.  My July meeting is coming up.  I have to see if I can track people down, see if we can come up with a better time to meet.  Then, maybe we can have a better turn out.

Too Much To Finish!

I've been busy!  I'll blog about my latest adventure in my next post.  But for now, I'm FINALLY finished with my quilts!  One is for my son, and one is for his ABA therapist's new baby.  If anyone out there has 2 children on the spectrum.....getting food cooked, laundry done, and the house cleaned is a feat in it of itself.  But, I got the quilts FINALLY done!  (It took a month.  Pre-Autistic kids, I could knock two out in a day!)

"Outgrowing Autism? Study looks at why some kids bloom"

"Outgrowing Autism? Study looks at why some kids bloom."

http://vitals.msnbc.msn.com/_news/2012/04/02/10946015-outgrowing-autism-study-looks-at-why-some-kids-bloom

I didn't even have to read that article to know why......
money.

That is what gets you early, intensive therapy.  Money, and lots of it.  I bet I spend around $2k in therapy and gas money to get out there.  It's not that I'm rich.....SO FAR FROM IT.  I am blessed enough to have family that care and who help me, and I scrimp, save, and never go anywhere or do anything.  All extra money goes there.  It really cheats my daughter who's higher-functioning because she needs therapy too.  But since my son is the lower functioning of the two, I have to put it there.  It's such a nightmare as a mother.  Trying to do your best for both of your children and always feeling like you're short-changing one, or the other, or both!  We don't go on vacations, I know my children won't be seeing Disneyland anytime soon...... it just breaks my heart.  But, I know there are many families who never get there, never go anywhere.  So I keep thinking about what I have and try and not focus on all the things others seem to be doing with their families all around me.  I'm lucky I have help.  I'm lucky I can get my son help.  Maybe I should have a four-leaf clover up there instead of a flower.  Maybe that will be my children's and my activity for tomorrow......to find a four leaf clover.

Fragile X study

http://www.autismsupportnetwork.com/news/could-autism-be-reversed-pill-3789343

Interesting article.  It talks about Fragile X and some experimental drugs that may help this condition-described as traffic jams in the brain.

I've lived with Autism my whole life, my dad's family is riddled with it, my ex-husband had it, and both of my children have it.  This particular study was interesting to me because I can actually SEE when a neural "traffic jam" hits!  It's like they all get stuck on some idea they have.  Like a record player stuck on the same track…over and over…..and they can't let it go!  It's such a crazy, frustrating thing.  If this medication could control those neural "traffic jams" it would be wonderful and "meltdowns" wouldn't last so long. 

Autism Awareness Day

Today is Autism Awareness Day and what better way to celebrate than to say thanks to those who work with our children every day.  I love chocolate covered sunflower seeds and sunflowers.  But, since the Autism Awareness color is blue, I thought it more fitting to have blue flowers.  I attached the sunflower seeds with zip ties, cut the stems to varying lengths, made some puzzle pieces, and voila!  You have the perfect gift for 12 teachers!

I Try

I wonder if some might read this blog thinking…."Why does she think she can say [anything] about Autism?"  I would say to them,  "I'm just a mom who has had family members with the disorder, an ex-spouse with the disorder, and 2 children with the disorder."  I want to share information and what I know or what I have found out.  Occasionally, I have information that can help someone.  And I like to help.  That's why I'm blogging.

Sometimes I try to be helpful on the Autism Networking sites.  I think that might get me in trouble.  Especially when people have such strong opinions about the disorder and how to treat it, how to talk about it, and how to do anything about it.  I post articles, videos, a study……make a few comments I think are non-bias and all the sudden everyone has claws out ready to go.  So, maybe I'll save those for my blog.  Hopefully I won't inadvertently offend anyone here.

I just emailed one of my son's old therapists in Utah to update her on his progress.  I wonder if therapists get annoyed with updates, or if they like to know how they have affected a little life.  They definitely have an effect on my life.  And I will never forget them.

Hare Loss

Life with 2 kids on either side of the spectrum is interesting.  I've mentioned my son a lot but my daughter, not so much.  She's brilliant and reads everything she can get her hands on.   I caught her reading this article in the magazine "Mind Floss."   Thank heavens she didn't ask me any questions and "the Easter Bunny" can pay a visit on Easter.  I was glad that didn't add to my stress which is literally causing me hair loss.  It's sad but true.  The lady at the wig store was very nice.  Her name is Susie at Wells Wigs Unlimited. 

Alphabet Song

I cannot say enough good about Building Bridges and ABA therapy.  My son was not talking....now look at him!

Other's Shoes

 I wrote this today as my status on My Autism Team.

"Eh, today is one of those days.....I'm tired of the battles I can't EVER back down from or I can't keep control of my child(ren), I'm tired of diaper changes every 2 seconds, I'm tired of fighting to spoon feed 3 times a day, I'm tired of being pulled EVERYWHERE every 2 seconds, I'm so tired of NO ONE waiting for me to use the restroom for 2 seconds, I'm tired of the financial hardships with no health insurance, I'm tired of going to the store because there's no one around to do it....I just...I cry "UNCLE"!!  To life!!  It's a pity party day.  I know we ALL have them.  Type some words to vent, get virtual hugs and continue on our life path that is so overwhelmingly rigid."

I try and write more informational posts.  I don't really like to "gripe" write because there is always someone who has it worse than you.  After I posted my whining, I was going to delete it, but a gal who has a 16 year old ASD son wrote on it.   Her story is that her 16 year old ASD son, had caused her problems within 10 minutes of her waking.  He's still not independent and she's still battling bathroom issues and feeding issues, as she has for the last 14 years.  Wow.  It puts things in perspective.  I feel bad for complaining.  The one thing I have going for me, at least for another couple years, is hope.  Hope I can get him as close to normal as I can before his developmental window closes.

It is true though.  Autism life IS rigid.  The kids, as all kids do, need routine.  But, the problem with our ASD children is that they are completely inflexible.  They get into routines that become outright rituals that MUST be done or their world will come apart.  I remember how bad my daughter was, but it's nothing like my son's is becoming.  He has started one such ritual, it begins with him screaming once we come inside the door, and progresses to him taking off his shoes, crying, bringing them to me and asking me, in his sounds, "help please" to put them back on.  I've waited SO LONG to hear words.... I totally cave at his request full well knowing I've just reinforced the negative behavior.  But I wanted to reinforce the words........
Some days, you just can't win.