Wednesday, October 31, 2012

Happy Halloween!

What I made for my son's teachers/therapists.


Halloween can be a time of great stress to those with children on the spectrum.  The costumes, the sugar, and noise all pose challenges.  Pumpkin carving even has it's own challenge because my son doesn't like the sight of slimy things.  I'm very tired at the moment and Trick-or-Treating seems like such a monumental task.....but I'll happily do it!  I am grateful I can spend as much time with my children as I do.


Monday, September 17, 2012

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!

Tuesday, July 31, 2012

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.)

Tuesday, July 17, 2012

Rolling Robin






I know this isn't a Reliant Robin.  But it reminded me of one.  I saw it parked by the Willamette River.  The Robin was a car with 3 wheels, which meant that it rolled very easily--as you can see by the scratches and dents all over the side.  There's a show on the BBC called "Top Gear" and they did a segment on the Reliant Robin.  It's a great segment and every time I have a difficult day, I like to watch it.  It makes me laugh.  Here, I'll share.......






Tuesday, July 3, 2012

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.

Wednesday, June 27, 2012

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.

Traveling With Children on the Spectrum



It's summertime and many people will be going on vacations.  Some people will go on planes, and some will go by car.  Luckily, I have tips for traveling either way.

DRIVING

Driving for many children is difficult, in some ways I think my ASD children handle road trips much better than NT's (neuro-typical, what we call normal) children.  Mostly because they are visual and can enjoy the scenery and have a lot of patience for video games and reading.  They also seem to like the security of the seat belt.

1.  Make sure you have comfortable car seats.  I drive my children around a lot and when the seat gets flat and worn out, I get a new one.

2.  Try and plan out a stop, every 2 hours.  I have a great app to help you find travel centers.  It's called "AllStays Truck & Travel."  I have an iPhone so I don't know if they have an Android equivalent, but it's the best $5 I've spent on an app EVER.  It not only gives you the gas stations and travel centers, but also nearby shopping, in case you need to pick up something, like wal-marts and malls.  It also can give you up to the minute gas prices as well as maps and exit numbers.  I just LOVE IT!

3.  Try and give the children something new to play with after each stop.  Whether it's a new game for the 3DS, new iPod app, or a toy they've forgotten about.... it helps give them a renewed interest in something to take their minds off the travel.

4.  For my older Aspie, I like to share maps with her so she can see where we're going.  It also teaches her how to read a map;  a very useful skill.

5.  I recommend leaving early in the morning, as early as you possibly can.  My children and I drove south about 13 hours and it made the trip much more bearable leaving at 5:00 a.m.  Children's patience for things is best in the morning hours.  Once you get up around dinner and bedtime, they are a lot worse to manage in a vehicle.

6.  I would take small snacks to space out along the drive, capri suns, fruit snacks, granola, etc....  AND I would pack small bags for garbage, a box of tissues, a roll of paper towels and hand wipes.  You can never be too prepared!

FLYING
(I wrote this post on the website www.myautismteam.com under traveling tips.)

Flying with a non-verbal, lower functioning ASD child:

Go to the counter and ask for a special needs pass. It will let you board the plane first, alleviating the stress of so many strange faces in a crowded plane. I have had no behaviors with my son since I've done it. Some airline clerks are nice about it, others not so much. Ignore them. You're giving everyone a better plane ride because your child will not be stressed and screaming.

Flying with ASD children in general:

Electronic devices are great for planes but 2 things you need to think about....

1. Will my child freak out when they ask you to put this electronic device away? If they will, wait until you are in the air before giving it to your child. When you have to put it away, try and have a favorite snack, book, or other non-electronic something available to switch them out with.

2. Will my ASD child insist on playing a noisy game over and over at high volume? Try and make sure your phone, iPod, iPad, or other electronic device has some kind of volume control, or remove the games that are loud or otherwise obnoxious. If your child can do headphones....GREAT! If not, this will need to be something you will want to think about.

3. I make sure I have hand wipes available, clorox wipes (an ounce of prevention is worth a pound of cure....flying back with sick ASD kids is not something you want to do! That, and my 3 yr old stimms by biting his hand), and a small plastic bag for garbage.

Hope these thoughts helped. Happy traveling!

Wednesday, May 2, 2012

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!)

Friday, April 13, 2012

"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.

Thursday, April 12, 2012

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. 

Monday, April 2, 2012

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!

Thursday, March 29, 2012

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.

Tuesday, March 27, 2012

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!

Thursday, March 22, 2012

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.

Wednesday, March 21, 2012

That's Kind of Cool...

I was quoted in a blog today from the co-founder of MyAutismTeam.....

the article is here.

That was kind of cool.

Thursday, March 8, 2012

Signs Your Child Might Be Autistic

I'm frustrated.  I spoke with an old friend today.  I asked how his boy was doing.  He told me things like, "my child is two but not talking, like the other kids are", "my child has a short attention span...of, like, none" and "my child doesn't seem to want to play with other children."  "My child", says friend, "is a little slow to start speaking, socializing, but it will be okay."  What I want to do is scream....."get them help NOW!"  Those ARE the signs your child is having issues and may, more than likely, be Autistic! 
I admit, even I was in denial at first, thinking, "ya, he's slow, but I have a feeling he'll be okay."  The developmental discrepancy didn't seem that bad, at two, but as time went on, and the other children were stringing sentences together while my child had no words, I started to panic.  It was also when I learned about developmental windows.  The reason doctors and educators test children for milestones is because, if they don't hit those milestones by certain time periods, you lose the ability to teach them those skill sets.  The greatest time of brain development and growth comes in the early years of childhood.  That is why everyone [doctors, educators and Autism organizations] are pushing early detection and early intervention.  The kids have a much better chance at more normal, higher-functioning lives. 
So that is where I am today.  Frustrated, feeling completely powerless to warn people.  That is why I'm writing these thoughts down.  So maybe someone, somewhere will stumble upon my words and get their child the help they need sooner.  If you are one of those people, please check out my post on "Autism.  What You Need To Know."  It's a list of things I wish someone had told me to do when my son was 2.  We're doing great, and I'm glad I have him in ABA therapy and a small social preschool class at Building Bridges, but, how much farther could he be had I known then what I know now?
The other thing people need to know is that Autism treatment is expensive and many of us are going into great amounts of debt to get our child the help he or she needs.  If, laws were introduced to force the insurance companies to pay for treatment, everyone's premiums would go up by an average of 1% which starts controversy.  "Why should I have to pay for someone else's child?"  Well, I'd rather pay that extra 1% than the extra taxes it's going to cost to fund all of these Autistic children who are lower functioning because their parents couldn't afford the help they needed to get them higher-functioning and able-bodied tax paying citizens by their developmental windows.
It's all a train wreck unfolding before our eyes.  Thousands of children will turn 18, needing Social Security and State and Federal social programs in order to live.  All of us in the Autism world can see it.  Why can't everyone else?  Well, one day they will.  Then who will they blame?

Wednesday, March 7, 2012

Walk In The Park


A walk in the park.


I don't think I've said much about the negative aspects to having an ASD child.  Especially one on the moderate to lower end of the spectrum.   A lot of times having ASD children is not a "walk in the park."  Unlike the fun my son and I had at the park today.

Lately I've been dealing with a very inconvenient, annoying, loud, aggressive behavior.  Every time we come home, from the park, therapy, shopping, my son doesn't want to leave the car.  For a while I was carrying him up the stairs as he kicked and screamed to get him into the house, staying calm and talking to him about how "we have to get out of the car" and "we will go in the car again."  Then, I tried a different approach by leaving him in the car (don't worry, it's in the climate controlled secured garage) with all doors open so he could walk into the house when it pleased him.  This has not worked either.  It has, however, allowed me some free time to blog and/or clean.
I've thought of all the possible causes....sickness, chronic ear pain, getting the process of "out of the car" in the "wrong (according to my son)" order, not letting him try to undo his seat belt, not letting him close doors, not letting him push the button to shut the garage door.......I've thought of and tried everything I can think of.  Now, I'm back to thinking the bad behavior is ear pain and taking him to the ENT tomorrow.  If that's not it, it's typical toddler behavior that I need to address with some kind of discipline or incentive.  If you do not have an ASD child, you will not understand this.....you can't scold, yell, "time out" or otherwise negatively discipline an Autistic child.  They are stubborn as a goat and they will win.  My success has been either being more stubborn than my child, or using an item as an incentive to do what I need him to do.  For example, my son has gone from a crib to a bed.  When it was "night night" time, I put him to bed, left the room, went downstairs to suddenly find him walking down after me.  I finally resolved this issue by staying upstairs, hidden behind his bedroom door, and every time he began to wander out, I directed him back in.  It's taken a while but he will stay.  As for my son's incentives, it's usually an electronic device like an iPod, or cell phone, or other digital toy.  Hey, you do what you can.

Autism Speaks


After a rough day it helps to remember certain moments you've had with your ASD child where you really had an opportunity to connect.  I documented such a time and it's on "Our Favorite Faces" in the photos section on Autism Speaks Facebook page.

Exploring

Lake Lacamas, Washington

It's been difficult to find things to do when it rains and rains and rains in Washington.  That is why I was SO GLAD to have a sunny day and the chance to go explore a small trail that follows the shoreline of Lake Lacamas near my home.  My Aspie loved the walk, commenting on the moss and ferns as we went, while my son (ASD) kept trying to run to the shore to throw rocks in.  Actually, it's a GREAT activity for your Autistic children, sitting by the water, letting them throw rock after rock in...but it should be done when it's WARM.  And we're not warm yet here.  Just be sure to be present around your child(ren) AT ALL TIMES!  Water is beautiful, but as I've seen so many times, it is deadly.  If you will be by a body of water with your Autistic toddler, or toddler or child in general, I'd recommend putting a life jacket on them while they play by the shore.  You can never be too safe!

Climbing The Walls


Climbing Black Velvet around Red Rocks in Las Vegas, NV


The title describes our cabin fever.  My son is climbing everything!  Chairs, refrigerators, cabinets, shelves…..it's getting very dangerous.  I was introduced to climbing not too long ago and I'm thinking I'd better get him to a climbing gym.  I've looked up climbing gyms that offer programs for Autistic children in the Portland, OR/Vancouver, WA area, but near as I can tell, they don't exist.  I'm going to contact ASD Climber Foundation to see if I can find something or maybe help start a chapter.  Maybe after a few phone calls I'll find one. There is a program in Salt Lake City.  (Ironic considering I moved from Ogden.)   Here is the link to Rock On!, should you live in Utah and care to participate.  I hope I can find my son something.  If nothing else, it would get the energy out of him and get us both a good night's sleep!

Monday, March 5, 2012

My Social Needs Networking

(Looking down on the Columbia River from Camas, Washington.)

I moved to Washington so I could get better help for my children.  I have very few friends and family around and actually have no one to watch my children so I can get a much needed break.  Meeting people is difficult since my children are still little and take up so much of my time.  I would like to volunteer at my daughter's school, but I have no one to watch my non-verbal son so I can do it.  Balancing the needs of my higher functioning child with that of my lower functioning child are difficult and I don't think I'm doing a good job of it lately.  Especially when my non-verbal 3 year old is as sick as he often is.

I won't lie.  I'm tired.  I need adult time.  I need stimulating conversations and to be an independent person for awhile.  I've heard of respite services.  I even checked into a place that provides it.  The wait list won't give me a reprieve soon enough though.  I guess I'll keep trying.

For people who don't ever get a break, there is mental relief in virtual social networking.  Check out "groups" on Facebook and My Autism Team.  I'm sure there are more websites out there, but those are the two I'm currently on.  They are a great forum to share resources, experiences and treatments but a lot of people use the forum to vent because, there is no one who understands better than another parent of an Autistic child.


"Ha!"

 
I don't think I ever covered why I call this blog "Without Words" (or, technically, onewithoutwords).  I assumed it to be generally understood and covered in earlier posts, but just in case someone missed it, my son cannot speak.  He is, without words.  That is how I started the blog, my son could not speak at that time.  I'm happy to report he's trying to talk.  His "no"s are becoming VERY clear.   Also, when he wants attention, he says, "hi!" as he looks you straight in the eye.  The picture above is him with his "ha"or hat.  In regular world terms, it's a clothes hamper. 

I cannot say enough about how much ABA therapy has helped my son.  Building Bridges, in particular, has been wonderful just because they are not only teaching him skills, but they are working on his diction as well.  Some days I can't believe I found this place, nor can I believe that now, I'm getting him as much therapy as I am.  A big thank you goes out to my family who has rallied to help my little boy.  I am very blessed.


























































































                                                                                                                                                                                               

Thursday, March 1, 2012

A Cause for Dogs

I had a Facebook friend send me a link to an Autistic "cause".  The motto went some thing like…. "this cause is to promote understanding, awareness, etc……. of Autism"   So I looked at it.  But the only "cause" I saw were promotions for therapy dogs.  The author, probably justifying the "real need" for her therapy dogs,  goes on and on about accepting Autistic kids for who and what they are and not trying to make them "normal."    It made me roll my eyes.  First off, 'way to promote your business under the guise of a cause lady,' second, who's normal, and third, Autistic children aren't normal…….that's what makes them Autistic.  Ugh….people.
Moving on….
I've been researching some possible grant opportunities for my wonderful people at Building Bridges.  I'm not finding much.  I can find organizations that will provide funding for schools back east, but nothing in the northwest.   It is getting discouraging.  What's even more discouraging is the fact that there are all these "link farms" when it comes to researching grants.  I have to go through so much to find legitimate websites, and legitimate websites that link appropriately.  It makes me mad.  I think, "Really?  You [the rat-dogs who own the link farm domains] have to link farm special needs stuff?"  Now THAT leaves me without words.  Woof.

Saturday, January 28, 2012

Autism. What You Need To Know.




I remember when I was given the diagnosis by my pediatrician....that my beautiful baby boy was Autistic.  I was given a phone number.  ONE phone number with the diagnosis.   It was to Northern Utah Autism.  From that phone number, I got a few more.  But I never got any information, really, on what to do.  Specifically, what treatment options were there, were they proven effective, how do you get treatment, where do you get treatment?  These were all questions I needed answers to that no one was able to give me.  Because, "ALL AUTISTIC CHILDREN ARE DIFFERENT".   I was given that response all the time.  And it's true, however, it didn't help me, as a parent, find treatment for my child.  So if you are a parent of a newly diagnosed Autistic child, I am going to give you the information you need to 1- find treatment options for your child, 2- find services for your child, 3- find others in your area who can help you navigate the "system(s)" that you will deal with for the rest of your child's life.

Once you receive the diagnosis, your treatment options:

1.  Get an appointment with a neurologist.
Why a neurologist?  Because you'll want to rule out any physiological conditions contributing to, or possibly causing the Autistic-like symptoms.  Get your primary care physician to help you get the appointment as many insurances require referrals and, the wait times for these specialists can be extremely lengthy. 

2.  Get an appointment with an ENT (Ear, Nose, and Throat doctor).
Why an ENT?  Many Autistic children suffer with hearing problems and since eye contact is a problem, many Autistic children are initially thought to be deaf.  In my children's cases, my son was initially thought to be deaf and both children had chronic ear infections and tubes throughout their early childhood.  Autistic children are sensitive to light, sound, and touches.   Knowing whether they are hearing or not, or how sensitive they are to sound, will help you navigate those social difficulties of going to restaurants, ball games, family gatherings and anywhere there's lots of noise and people. 

3.  Contact your school district.
If your child is under 3 years of age, there is a program called "Early Intervention."  They will get you set up with services like speech, occupational therapy, and other therapists/therapies they have available.  The mistake I made here was assuming my school district had all the answers for me.  That they had what would help my son the most.  Don't get me wrong, they were terrific people, every single one of them are still God's angels to me, but, you cannot stop there -especially if you have a non-verbal child- you need to do more.   If your child is over the age of 3, then they are a part of the school district.  You will be introduced to IEP's, or Individual Educational Plans which outline the services the district will provide your child.  Before you attend one of these IEP meetings, please read my section on school district services below.

4.  Look for an ABA therapist in your area.  I wish I had done this earlier for my non-verbal son.  Even though he is making incredible gains with therapy, I have major guilt over not having done it when he was 2.  See what your insurance can cover, if they do at all, see if your therapist can help you with a payment plan or schedule if insurance can't cover it, and if those options are exhausted, you will need to start looking for private grants and funding.  Another option, and far less expensive than private therapy, is to do ABA therapy yourself.  Visit Rethink Autism for more information on do-it-yourself ABA therapy.

5.  Look into a therapy called "The Play Project".  They have several chapters throughout the country.  This therapy engages the child by following his cues to create circles of communication.  You begin with a simple look, and you build on that eye contact.  It worked really well for my son.  He learned to like engaging with people.  I credit much of his current awareness with that early intervention. 

6.  I would read all the literature about gluten free and caseine free diets and decide if you want to pursue those routes.  These are not cure-alls as a lot of people bill them but worth checking out and experimenting with.  Leave no stone unturned! 


Finding services for your child:

1.  School district.
As stated above, they are one of the first organizations you need to contact.  They will set up an IEP (Individualized Educational Plan) meeting (for children 3 and older).  Prior to attending this meeting, I recommend you be well informed and prepared.  Have a treatment plan ready to go.  This could be a letter, or document by your pediatrician, psychiatrist, neurologist, or another expert in the field.  It will give you a starting point to make sure your child gets adequate services because all school districts are strapped for cash and THEY WILL DO AS LITTLE AS POSSIBLE!  Read this website written by a father of an autistic child.  It is VERY HELPFUL.  Basically, he suggests getting an attorney and/or advocate to come with you to all the IEP meetings and getting a treatment plan together by medical professionals BEFORE you go to your FIRST IEP meeting.  The medical/professional treatment plan gives you and the educators a standard to go by.  If the district says they can't do something the professionals say you need, you point to your evaluations and say, "that is not adequate.  This is adequate."   If you need somewhere to start analyzing your Autistic child's study habits and classroom needs, (not necessarily educational or therapeutic needs and/or requirements) look here.  They have workbooks that are to be filled out by the student and a workbook for the teacher to analyze the student's responses.  This way they can employ strategies that will cater to that child's specific functioning (in the classroom) needs.

Note: Navigating the school districts can be extremely frustrating and discouraging.  Especially after hearing horror story after horror story.   I understand that you can get more accomplished by involving lawyers and advocates-people you hire who know the law and can remind the district of your child's rights to an appropriate education.  Being a single mother of 2 ASD children, I cannot afford a lawyer nor an advocate.  I felt the money better spent on private therapy and left the district altogether.  I do know a lot of parents, though, who educate themselves and force the district's hand by sheer will, spitfire and determination.  I'm sure I will have to go that route as well at some point.  Unfortunately, I don't have the luxury of time at the moment since my son's developmental window closes soon.

2.  State services.
For the state of Utah, this is "Children with Special Health Care Needs" but every state has this department.  Contact them to make an appointment so your child can be seen by one of the psychologists.  They can make recommendations and assist you in getting state aid for your child.  This can be done in the form of Social Security, or SSI, depending on how severely Autistic your child is.  There are also voucher programs to help you fill your car if you are driving great distances for therapy.   (I'm still trying to find out about this one but I know people who have done it.  I will blog about it later if I can find out more.)

3.  Church services.
This may sound odd to some, but there are churches out there who have people who specialize in helping their members get assistance with their children with special needs.  They are also a good source of emotional support and well-being for parents and families of special needs children.  It's another resource.  I thought I would mention it.

Finding others to help you navigate the system(s):

1. National and local organizations.
Use the internet to find the national organizations and their local chapters.  Places like Autism Speaks, Autism Society, Families for Early Autism Treatment (FEAT), - the link provided takes you to the wa site.  Check to see if this organization is in your state-  and you can check this website to a list of many more...http://www.autismawarenessonline.com/national.htm

2.  Social Networking sites.
The two social networking sites I currently have the most contacts on are Facebook and My Autism Team.  They link you with other parents who are going through the same daily struggles you are.   It helps your morale when you know you're not alone.  It also links you with other people who can give you further insight into services, your child's behavior, and different treatment options that have worked for them and, it's also a place to vent where others will understand. 

I hope I have provided enough information to help someone out there get help for their child.  At least it's somewhere to start.  I wish I would have known some of these things sooner.  Oh well, live, learn, and more importantly, share!

Thursday, January 26, 2012

Go Bears!

Clearly, I lack the focus (and the time, honestly) to maintain a blog with any sort of regularity.  So here is an update of my life as it is....
 I live in Camas, Washington --(Note to anyone looking to move to Camas for a good Autistic Preschool program......DON'T!  They have NOTHING!)-- and my son is happily enrolled in "Building Bridges" in Portland, Oregon.  I commute there everyday, but it's worth it.  Building Bridges is a group of therapists/specialists devoted solely to treatment and support services for children with Autism.   My son's ABA therapist is GREAT!  I can't say enough good about the programs and the staff.  They are all wonderful.

As for my Aspie daughter, Camas turned out to be very good for her.  Helen Baller Elementary has a terrific principal and a very caring, wonderful school counselor.  I met with them to discuss potential difficulties with my 3rd grade daughter and they have been extremely helpful in getting her the social support she needs.  The counselor even got a group of girls together to have social lessons with her.   She also has an amazing teacher who has identified her as a gifted student and wants to test her out to an accelerated program this spring.  Again, I cannot say enough good about this school and what it's done for my daughter.  She's very happy going to school and is finally eating her lunch!  (Sad, but true.  She rarely ate it before.)