Dec 17, 2009

MIXED NUTS AND THEN SOME



Santa came to visit the Idaho Autism Community Christmas party last week. I think Ryder knew it was Grandpa-otherwise why would he be so comfy with him? Last year he freaked out when he sat on Strange Santa's lap.

One of my favorite Christmas movies to watch is called Mixed Nuts. It is really funny and has an all-star cast. I never hear people talk about it, so either it's not as funny as I think...or...I'm just strange.

My thoughts are all over the place lately--trying to get ready for Christmas.

This morning I had to take Hunter to the doctor to get a piece of wheat stalk out of his throat that was stuck. Why would he eat wheat from a wall decoration? Well...It's all about the gluten that he craves. Our DAN doctor is going to love this story.

Speaking of our DAN doctor...Ryder had an appointment last week in SLC Utah with him and there is a new comprehensive test we can do. Yeah! Maybe now we can get some answers about what to do with his severe gut pain and inflamation.

I've been going with Bill to his therapies, Counseling and Speech. It's interesting to watch him try and think through abstract ideas. He REALLY struggles with his feelings. It's almost like he is a robot.

I learn something new everyday in this world I live in--this Autism world.

Happy Holidays everyone!

Nov 17, 2009

SOMATIZATION: WHAT'S THAT?



We had the good fortune of reconnecting with some friends that we hadn’t seen in 11 years. They invited us over for Sunday dinner. It was nice to catch up. Before we got there, William was dealing with some social anxiety, but since we knew these friends were very down-to-earth and straight-forward, I tried to refrain Bill from fretting.

During the course of the meal, and relaying the past events of our 11 year absence, our friend said, “Bill- you were always sick!”

This got me thinking about life with Bill during our early married years. And I do recall him always being sick or injured. Then I remembered part of his (many) psych evaluations. It explained about somatization. If you’ve ever heard the term “psycho-somatic” –then you can figure it out.

The definition:: Somatization is a term that describes the expression of psychological or mental difficulties through physical symptoms. Somatization takes a number of forms, ranging from preoccupation with potential or genuine but mild physical problems to the development of actual physical pain, discomfort, or dysfunction. Somatization appears to be fairly common, and a somatoform disorder diagnosis is not warranted unless symptoms cause significant distress or disability. –Taken from the Encyclopedia of Mental Disorders.

With Asperger’s and Autism, it is very difficult to figure out what you are feeling, and even harder to express your feelings and emotions. I think because of this, Bill internalizes everything and all of that energy is trapped inside of him, causing him to be sick all of the time: headaches/migraines, severe stomach problems, appetite poor, sleep disturbances, a constant sinus cold, aches and pains-here and there, and depression.

Those are my deep thoughts for the day.

Nov 3, 2009

THE CASE OF THE SLIPPERY PAJAMAS

Last week, Ryder fell backwards off of his stool. He had slippery pajamas on, and he must have thought he was on his special stool with a back on it, but he was on just a regular stool without a back. Down he went and bonked the back of his head. He was out cold for 20 minutes. I called the doctor and he said to go to the ER.

Ryder had a CT scan and everything looked good, so that was a relief. He was back to "normal" after 2 hours or so, but now has post-concussion syndrome and he has been sleeping a lot. Never a dull moment around here.

Here he is 1 hour afterwards and in the waiting room. He's a little out of it.

Oct 27, 2009

GOOD TRIP


This morning I took Ryder's hand to lead him to the front door because it was time to go to school. He must have tripped over his shoes (they are a little big), but I managed to swing him up and save him from biffing it on the floor.

I knelt in front of him afterwards and looked at him.

I said, "Did you have a good trip?"

And you know what? He laughed at that. See. Someone is home after all.

Oct 15, 2009

SPEECH THERAPY FAMILY




We received some good news from the Occupational Therapist for Hunter and Mason. They no longer need services!! They have finally caught up with their peers in this area. It came as quite a surprise. I am sure that 1 year of gymnastics/tumbling with an OT also helped, as well as the in-school therapy and out-of-school OT. YEAH!!

Now, we focus on Speech. All three boys were evaluated again and they still need services. Hunter is age 6 years and 3 months in his pragmatic language (his real age is 10 1/2). Mason's needs are different; articulation and social skills. Of course, Ryder needs everything.

It's so strange that each kid has different needs/challenges when they are from the same gene pool. You'd think they would be a little more similar. I guess that's why they call it a SPECTRUM.

Bill is getting ready to start Speech himself. He has difficulty with pragmatics and social skills. He has learned throughout his life to "copy" how other people survive socially, just to get by--but finally he is able to get the therapy that he needed so long ago.

I'll have to post a conversation we have had as an example. It really is humorous at first, then absolutely frustrating to no end later as these conversations continue every day. Hunter is the most annoyed with it. Well, I guess he's right up there with me. Hmmm...Let me think of one...

Bill: "Hey Steph, when was my last physical with the doctor?"
Steph: "I think it was last May"
Bill: "You mean a year ago last May, or this past May?"
Steph: "No, just this last May."
Bill: (clarifying...) "You mean a YEAR ago in May, or this PAST May?"
Steph: (trying to contain my eye roll) "Just this last May...How hard is that to understand?!"
Bill: "That's what I'm trying to find out. All I want to know is if it was a year ago, or this past May?"
Steph: "Just a few months ago".
Bill: "A few as in three or twelve? It depends on the context, you know"
Steph: (by this time I have pulled out all of my hair) "Now I don't want to tell you!"


Whew!! Ok, ok, so I exaggerated a little bit, only at the end, but it is TRULY frustrating. You can only imagine when Bill and Hunter go at it. It always ends up with Hunter stomping off and coming up to me with daggers in his eyes and he says, "See?!"

I think Speech Therapy will be FANTASTIC!!

Oct 3, 2009

COMING OUT


Now that the Travolta's came out that their son did in fact, have autism--I thought I'd repost this older post.

I was livid when I found out. Think of all the good they could do for the autism community and the awareness for the rest of the world.

I know it's none of my business. But those of us little people sometimes need a hero.

Here is a link to the foundation they have set up in their son's name. Heroes are better late than never.



Jan 7, 2009

MORE THAN A TRAGEDY


This will be a controversial post, and I mean no disrespect to the Travolta family. I've been thinking--well--wondering if Jett Travolta did in fact, have a form of autism. The family denies it, but that is understandable too. (Maybe they called it PDD-NOS.) The reason for my speculation is this:

-Seizures
-Disconnected behavior in public
-Macrocephaly
-His uncle, Joey Travolta, did a documentary called "Normal People Scare Me" about autism and believes Jett had a form of autism
-Holding his father's hand in public at age 16
-Being buckled into a car by his nanny
-Having a nanny.
-Toe walking
These are just some of my observations. I won't bring up their religion, because that will open up a big can of worms

Oct 1, 2009

COWBOY AND WILLS


This is a must read: Cowboy and Wills by Monica Holloway


"Monica Holloway has written one of the most extraordinary memoirs I've ever read. Tender, loving, and heartbreakingly intimate, it chronicles her struggle to coax her son, Wills, out of the shell of autism. I highly recommend this gorgeous and frank book about family, connections, and the ephemeral state of belonging."
-- Barrie Gillies, senior editor, Parents Magazine

"Monica Holloway had me laughing AND crying within the first five pages of Cowboy & Wills. She crafts artful and, so often, hysterical observations of everyday life, while also revealing the many dimensions of heartache that come with being a mother who wants only the best for her family. Monica is the genuine article when it comes to pitch-perfect memoir writing."
-- Jennifer Lauck, New York Times bestselling author of Blackbird and Still Waters





Sep 24, 2009

THE HORSE BOY


This looks like a great movie called The Horse Boy:


How far would you travel to heal someone you love? An intensely personal yet epic spiritual journey, The Horse Boy follows one Texas couple and their autistic son as they trek on horseback through Outer Mongolia in a desperate attempt to treat his condition with shamanic healing. When two-year-old Rowan was diagnosed with autism, Rupert Isaacson and his wife Kristin Neff sought the best possible medical care for their son—but traditional therapies had little effect. Then they discovered that Rowan has a profound affinity for animals—particularly horses—and the family set off on a quest for a possible cure….The Horse Boy is part travel adventure, part insight into shamanic tradition and part intimate look at the autistic mind. In telling one family’s extraordinary story, the film gives voice to the thousands who display amazing courage and creativity everyday in the battle against this mysterious and heartbreaking epidemic and insight into how, in life’s darkest moments, one can find the gateway to joy and wonder.

Sep 17, 2009

THE OLD ALBION NORMAL SCHOOL-PRESENT DAY

For the Myers Family Reunion this year we went to a supposed "haunted" college, which used to be Albion Normal School back in 1901--a college that taught students to be teachers. It has been closed and boarded up since the 1960's. The town of Albion, Idaho has a population now of less than 200, so it is very strange to see these ominous buildings in the middle of nowhere. A family recently bought the place and they are now renovating it. The first building to be renovated is called Miller Hall. This used to be the men's dormitory. This building is available to rent out for family reunions. As a family, we saved up for a year to afford it--but we have a fairly small family (25 people). Plan to book it a year in advance!

Here is a link to their sight: http://albioncampusgrove.com/index.html

We had a lot of fun and we all walked away feeling like we needed more time to enjoy it because there is so much to do there. We stayed for two days (barely) and two nights.

Here are some photos:








































































































































































Aug 25, 2009

GO LYTELY








Here is a catch-up blog. Last month, the boys had to be cleaned out up at the hospital. Their bellies were very full of fecal matter. Mason was worse, and had never been cleaned out before. Hunter was cleaned out about five years ago. It really helps. I am so sick of Mirilax and Ex-Lax and everything in between. We've tried behavior interventions, too, but I'm 90% sure their is a physiological problem.
Their dad just had a colonoscopy...forgot the follow up appt today though-- (Asperger's ) but we do know something is up with his bowels, too. Doc says the nerve endings don't look right... that would explain many things.
If we ever build a house, I would definitely install four toilets in the same room for all of the guys to do their thing. Let sweet freedom ring!!!
**By the way, the name of the medicine that is dripping into their tummies is called "Go Lytely". Anything but. Somebody was trying to be funny when they came up with that title.

















I





























Aug 5, 2009

Jul 31, 2009

DAMAGED GOODS?


I finally received Mason's recent psych eval results and unfortunately he still has PDD-NOS. I was REALLY hoping he had grown out of it with all of the therapy and stuff. His IQ has decreased, his attention is undiagnosed ADHD, (dr didn't want to diagnose him--although he said he's sure he has it) and tics and a major phobia have developed in the past year.


There isn't a day that goes by

when I don't ask why.


Sometimes I feel like I'm hitting my head against the wall over and over in the same spot and all of these therapies are pointless.


I really believe that the higher-functioning ones have a harder time with it all. Because they are so close to being neurotypical. If people didn't know, like my hubby's situation growing up, they would be labeled as "lazy", "stupid", "indifferent", "isolating", etc., etc.


I forget that the P in PDD-NOS stands for "Pervasive" . The definition of pervasive is: "to spread throughout". So, where Mason is age 9 (next month) but his social skills are that of a 4 year old, and his adaptive living skills are that of a 5yr 10 month old, I need to parent him accordingly. I need to remember not to expect him to clean his room the way other boys do at his age. I need to remember that he is like a four year old when he plays with other kids. This makes sense because all of his friends are younger than him. It's hard to raise a kid when you don't even know how old they are in all of the catagories.


So what happens when they get older and can't keep up with their peers? Or will they be able to keep up with tons of therapy and teaching?? So many unanswered questions. Sometimes I just want to have a break from the worry and wonder of it all. I guess that's a parent's job, though.

For those who would like to know, the following is taken from the Encyclopedia of Mental Disorders. (I would not catagorize PDD-NOS as a "mental" disorder, however)


PDD-NOS

Definition: Pervasive developmental disorders are a group of conditions originating in childhood that involve serious impairment in several areas, including physical, behavioral, cognitive, social, and language development.


Description
Pervasive developmental disorders (PDDs) are thought to be genetically based. The most serious PDD is autism , a condition characterized by severely impaired social interaction, communication, and abstract thought, and often manifested by stereotyped and repetitive behavior patterns. Many children who are diagnosed with PDDs today would have been labeled psychotic or schizophrenic in the past.


So in the past, I would have had three psychotic kids and one psychotic husband? Wow. Glad I live in this day and age. That is a tender mercy.


I still search for the answers why. I think it is just human nature. How do you NOT grieve everyday for what could have been? I need to get to that point somehow.

Sorry if this post is a bit of a downer. Yes, I'm still on my meds. :)


It all started this morning with the sounds of Ryder moaning in the front room at 6:30am. I went to him and realized he had puked out both ends (if you know what I mean) and that was the beginning of my day. It's all good though. I did manage to find a La-Z-Boy recliner at a garage sale for only ten bucks. And, no, it was not damaged by secretions like my father-in-law put it.

Jul 21, 2009

ADAM

Check out this trailer for a new movie being released next month about a guy with Asperger's. Looks like a great one! It's called Adam.

Jul 12, 2009

CRAZY BUSY DAZE


My blog has taken a seat on the back of the bus lately. I've been so busy this summer, having kids home, starting up developmental therapy for two of the kids, and being the secretary of the Idaho Autism Community, that I haven't had time for much else. And I really like my little blog. :) Hopefully when school starts up again I will have a little free time to do this.



Mercedes just got back from Girl's Camp. It's nice to see her mature and do better at camp...previous years have been hard for her. I still can't believe she'll be in high school in one short month! That is messed up.



Hunter is maturing too. He hates the fact that he NEEDS to wear deodorant and I remind him all of the time. His hair on his arms is getting long and he's freaking out because he does NOT want to be hairy like his part-Italian dad. (Actually, Hunter's hair on his arms is due to his developmental challenges...at least that is what the dr said... I guess kids with dev.delay often have abnormal hair growth...) Hunter uses my cordless shaver to shave it off.

He is constantly wanting to get on the computer to look up maps and then he draws them. Over and over and over and over.



Mason is getting so big. His feet are now bigger than mine, and he is 8 years old!! He is five feet tall. He and Hunter go to their special needs gym class, and he is like one of those giants in fairy tales that can barely move. The picture above is Mason coming off conquerer.


Ryder continues to have gut pain. We cannot afford to take him to Thoughtful House yet, but saving up. Medicaid won't pay for his blood work and labs that need to be done before we can go, so that is a real barrier for us. He is a fun guy except for when he is in pain. Then we all feel it.

Jun 28, 2009

PHOBIAS: JOIN THE CLUB


Mason, age 8, is the newest member of the anxiety/phobia club in the family. I noticed about 9 months ago that he seemed awfully jumpy around insects. Especially the flying kind. I was hoping it wouldn't develp into anything, but after this past week, I will seriously consider medicating this child if we ever go outside again.


A week ago Mason was outside playing and got stung by a bee. He screamed, flailed, and had a total freak-out experience. We got him situated and bandaged up, etc. The day after, his bee sting had spread out around the bite and was swollen, hot, and tight. I drew with a Sharpie on it to make sure it wouldn't spread anymore, and then I called the pediatrician. He had a bit of a delayed reaction he said. The dr also said it would be ok if he went on the first-ever camping trip that was planned for the next day with his dad, brother and grandpa.


I know... you can see what's coming can't you?


Well, long story short...They made it for several days and decided to come home early because of Mason. Mason was horrified because of a bee that flew in through the car window. He screamed, jumped out of the seatbelt, and lunged for cover behind Hunter, and in this process he got his legs tangled up in the seatbelt. More flailing ensued, I was told.


By the time he arrived home he had a rash all over his body--which Bill thought were insect bites, but it was clearly a rash. (Maybe from anxiety??) Mason was very jumpy and kept turning his head real fast as if he was looking for a bumble bee. He kept swatting himself. He asked me why he keeps hearing a buzzing sound in his ears when there were no bees around. This was very concerning to me.


Mercedes has a phobia of spiders which started around eight years old. Therapy and a small bit of Prozac has really helped her. Bill has a phobia of grasshoppers. If I let myself, I can freak out with mice. But I'm usually in check. :) Hunter has anxiety with just about everything loud and intense, especially movies. Also, dead birds. Whats up with the animal kingdom?


I was hoping just one kid of ours would not have to take anti-anxiety meds. Mason was my best bet. I need to talk to the psych dr, and as luck would have it, Mason actually has an appt with him tomorrow. Deep Sigh.


Anyone else have any phobias??



Jun 10, 2009

THE LATEST


We've been trying to adjust to this summer schedule and it has done a number on us. Hopefully the kids will get into the sync of things soon.


I haven't had much time to post things of a personal nature--but here is the latest:


I am the secretary of the recently formed Idaho Autism Community in our area. That keeps me busy. We have some events planned and we hope lots of people show up.


I've been fighting with the doctor to order some labs for Ryder so we can get him to Thoughtful House, but it's a no-go for now. In the meantime, we save money and I come up with a different approach. We see him in a couple of days...


Ryder has been having some bad days lately, and I know he's been finding gluten. I caught him with a chocolate Zinger all over him. The following day he whacked a package of animal crackers open and gobbled them up. It's been hard having the kids home because they will leave food out and Ryder will have free reign. We're trying--again--to teach them to "be aware".


To our amazement, we discovered Ryder can turn the bathtub faucet on when he decides to take a bath. Unfortunately, he does not discriminate between hot and cold, and now he has first degree burns on his lower half.


Mercedes is on the swim team this summer, so she swims for three hours a day, Monday-Saturdays. She thinks we've sent her to swimming boot camp.


Hunter has been very quiet lately. He's been in his own world now that summer is here. He just fixates on maps, telephone books, MapQuest, GPS's, and drawing his own maps.


Mason is obsessed with video games, so I've had to LIMIT him A LOT. I've had to limit his father, too! What a bunch of amoebas when they're together!


Picture: ***Ryder fell asleep with a cup in his mouth. **:)


Jun 7, 2009

SUSAN SHOULD HAVE HAD MORE HELP

I came across this article about Susan Boyle, the Britian's Got Talent 2nd place winner. She has some learning disabilities, and it wouldn't surprise me in the least if she had Asperger's, because of some of her characteristics and mannerisms. Some of you may have heard she checked into a hospital after the show from exhaustion. This article here and here explains more. I'm glad they are paying her hospital bills. And we all need to be reminded that stress can exacerbate anxiety stemming from a disability.

Jun 3, 2009

ADULT ADHD IS REAL


Check this out: http://www.adultadhdisreal.com/ and take the quiz to find out if you might have Adult ADHD.


Gotta love Howie Mandel!

May 25, 2009

A CHANGE ALONG THE PATH





















Hunter, Mason and I went on a walk along the Edson/Fischer nature trail one afternoon. I took a lot of pics and thought I'd post them.

Good news: Mason no longer qualifies for Occupational and Speech therapy in the school setting. He has grown by leaps and bounds this past year. The problem is, the school's "cut off" mark to qualify is 7 percent or below. They have very strict qualifiers. So, if I don't agree with the school, I have to fight it...due process. I'm not going to. Let's give it a year. He's done very well and he'll still have outside Speech and OT, so that should be enough.
Not so good news: School gets out in four days. Woe is me. :)
Enjoy the pics!










May 18, 2009

TOP 10 TERRIFIC TRAITS OF AUTISTIC PEOPLE

Below is a great article by Lisa Jo Rudy, that I came across.


Updated February 26, 2009

If you're sick of hearing about all the "deficits" challenging people on the autism spectrum, join the club. But for every down side to autism, there seems to be a positive -- an unusual trait that rarely appears among the "typical" community, but shines out among autistic folk. These plusses are well worth celebrating.

1. Autistic People Rarely Lie

We all claim to value the truth, but almost all of us tell little white lies. All, that is, except people on the autism spectrum. To them, truth is truth -- and a good word from a person on the spectrum is the real deal.

2. People on the Autism Spectrum Live in the Moment

How often do typical people fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? People on the autism spectrum truely attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.

3. People with Autism Rarely Judge Others

Who's fatter? Richer? Smarter? For people on the autism spectrum, these distinctions hold much less importance than for typical folks. In fact, people on the spectrum often see through such surface appearances to discover the real person.

4. Autistic People are Passionate

Of course, not all autistic people are alike. But many are truly passionate about the things, ideas and people in their lives. How many "typical" people can say the same?

5. People with Autism Are Not Tied to Social Expectations

If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for people with autism, social expectations can be honestly irrelevant. What matters is true liking, interest and passion -- not keeping up with the Joneses.

6. People with Autism Have Terrific Memories

How often do typical people forget directions, or fail to take note of colors, names, and other details? People on the autism spectrum are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.

7. Autistic People Are Less Materialistic

Of course, this is not universally true -- but in general, people with autism are far less concerned with outward appearance than their typical peers. As a result, they worry less about brand names, hairstyles and other expensive but unimportant externals than most people do.

8. Autistic People Play Fewer Head Games

Who was that woman, and why were you looking at her? I know I TOLD you I didn't mind if you went out, but why did you believe me? Most autistic people don't play games like these -- and they assume that you won't either. It's a refreshing and wonderful change from the Peyton Place emotional roller coaster that mars too many typical relationships!

9. Autistic People Have Fewer Hidden Agendas

Most of the time, if a person on the autism spectrum tells you what he wants -- he is telling you what he wants. No need to beat around the bush, second guess, and hope you're reading between the lines!

10. People with Autism Open New Doors for Neurotypicals

For some of us neurotypicals, having an autistic person in our lives has had a profound positive impact on our perceptions, beliefs and expectations. For me, at least, being the mom of a son on the autism spectrum has released me from a lifetime of "should" -- and offered me a new world of "is."

May 16, 2009

NO TIME


I keep trying to find time to post something of interest, but our lives are so hectic right now with the end of the school year fast approaching. I'm trying to get a summer schedule together...Ok. I just heard a loud bang upstairs. Later................................

Two hours later, I'm back. I don't know where that bang came from. We have to make sure each door is closed upstairs, plus we just installed a gate to the kitchen. The other day Ryder figured out how to move the stool over to the counter, climb up and over the counter, back down on the other side and open the pantry door. He'll find all of the gluten and casein ladened foods and have himself a feast, so we have to keep a good eye on him.

Another two hours later: Bill came home from running errands, brought a hamburger home and left it in the sack on top of the kitchen table, then went outside to play with the other boys. I didn't know about the sack, and the next thing I see...Ryder had devoured the hamburger.

We'll see if he sleeps tonight.

The boys tummies are full and backed up. We're seriously considering a clean-out up at the hospital this summer. I really feel like I'm doing the very best I can based on the load I've been given, but some days it's just not enough. I need five of me.

May 10, 2009

HOW DID IT ALL BEGIN?




The following is a poem written by Sally Meyer. I came across this poem several years ago when we first learned about the autism that came to dwell with our family. It brought me a lot of comfort at the time, and still does. A special thank you goes to Sally for letting me post it!

How did it all begin?

I was seated in a spacious room, with many other women, the room was adorned with beautiful paintings of children, the beauty and innocence of their faces lent an atmosphere of wondrous joy to the room. Silence permeated the air, as we sat together, no one uttered a word, and I wondered why we were gathered there. The sound of a door opening behind me broke the silence, no one turned to look, we all remained perfectly still, there was a reverence in the air, a feeling of great joy.

I felt someone touch my shoulder, and rising immediately I followed the others who were chosen, and we made our way softly out of the capacious room. Walking along a narrow hallway, lined with mirrors framed in gold, we passed beneath twinkling chandeliers that sparkled overhead. We were led into another room even more prodigious than the first, and it was so dimly lit that I stumbled slightly as I entered. As the last woman proceeded through the door, it closed softly behind us. An audible gasp emanated from all who stood within that exquisite room, for there, before us were a chorus of children. They were clothed as we were in purest white, and they stood hand in hand softly singing. Their faces glowed with a beauty that defied description. A hush fell upon us as we gazed in awe, at the wondrous sight before us. No words were spoken, for mere words could not describe the scene that we beheld that night. A voice came from the back of the room, a soft, compelling voice, we looked around us, but could not see who was speaking.

"Heed well my words, dear sisters, for you have been chosen to receive these children. One day you will become the mothers of the children you see before you now. These children that stand so glorious in their perfection are the self same children that will be your own. These children will struggle in their mortal lives. Some will be blind, some deaf, or unable to speak. Others will battle with a body that will fail them. Some will never understand the world to which they are sent. Many of these children will become ill, victims of illness and disease. Then there will be those who, while they are born perfect and whole, will suddenly and without warning be taken from your arms. You will weep a thousand tears as you wonder why, you will fall to your knees in despair, because you will not remember this day, or the perfect children you see before you now. Your journey will be hard, your road a long and difficult one. You may stumble and your steps falter as you struggle to carry on. But fear not, for I will be with you always, my peace will remain with you and you will be blessed with great joy that other mothers may never know. You will have the knowledge that your child will return to me, to become perfect and whole again, as you see them now. You will learn patience, grace and charity. Your prayers will not go unanswered, for I will not leave you alone, to care for these, my favored of all children, who will be entrusted to your care. I will comfort you in your darkest hours. I will be with you in your sorrow, and weep with you as you grieve. Now go forward and choose."

I watched as other mothers moved slowly forward, mingling with the children, I watched them choose carefully that child who would be their own. Once again a light touch prompted me to action, and I walked among the children. There were so many, each so beautiful, how would I know? How could I choose?

For the third time that evening, I felt a gentle touch, and I turned to see a small boy standing before me. His eyes were of the deepest grey, they seared my soul as they looked up into mine. Kneeling down in front of him, I caressed the dark curls that framed his innocent face. Taking his small hand in mine, I kissed it gently. As I gazed into this beautiful face, recognition overwhelmed me, he smiled and spoke softly and with the voice of an angel, he uttered just one word .. . . ."Mother" . . . . . . . .

May 5, 2009

JOKE OF THE DAY


A guy is flying in a hot air balloon, and he's lost. He lowers himself over a field and calls to a guy "Can you tell me where I am and whereI'm headed?"

"Sure. You're at 41 degrees 2 minutes and 14 seconds North, 144 degrees 4 minute and 19 seconds East; you're at an altitude of 762 meters above sea level, and right now you're hovering, but you were on a vector of 234 degrees at 12 meters per second"


"Amazing! Thanks! By the way, do you have Asperger's Syndrome?"


"I do! How did you know that?"


"Because everything you said is true, it's much more detail than I need, and you told me in a way that's no use to me at all."


"Huh. Are you a clinical psychologist?"


"I am, but how the heck did you know that??"


"You don't know where you are. You don't know where you're going. You got where you are by blowing hot air. You put labels on people after asking a few questions, and you're in exactly the same spot you were 5 minutes ago, but now, somehow, it's my fault!











May 1, 2009

HELP IS HERE AT LAST!


A few nights ago I went to the first Idaho Autism Community (Pocatello chapter) meeting. A mom by the name of Beckah Whitlock and a group called Have Fun merged to form this action-based Autism group. I am very excited that Idaho is becomming more "aware".
A chapter opened in Rexburg, now Pocatello, soon Idaho Falls, Boise, Twin Falls, and more to come...This is so needed in not just our community, but our entire state. Idaho has always been behind in everything except for the little thing that grows in the ground, commonly known as the potato.

Their site is still under construction here. The next meeting is May 12 at 6:30-8:00pm at the Marshall Public Library in Old Town Pocatello. Anyone interested in supporting and volunteering and helping and socializing and being a friend is welcome--even teenagers!! I'll be posting more of this to come...

Apr 25, 2009

HE'S ONE OF THEM


This morning I went to Mason's soccer game. He hasn't played on a soccer team since he was four, and at the time he and Hunter (both on the same team) just ran around picking flowers on the field. It was then I realized they had some growing up to do. So this Spring, after Mason expressed an interest, I signed him up.

It was so much fun to watch Mason play. "The boy that towers over all of the rest." It felt awesome when parents cheered his name after he made a long-distance kick.

It didn't matter when he tried to kick the ball, and somehow slipped and did a backwards tuck n' roll, then up again. (maybe gymnastics is helping more than I thought with his motor skills).

It didn't matter when he got kicked in the shins more than once (we don't have shin guards yet) because he just kept going.

It brought tears to my eyes when he stopped the ball with his foot mid-play to change directions and people whistled, clapped and cheered for him.

They don't know. Today he was one of them.

HOW DO YOU EXPLAIN TO SOMEONE...an essay

This is a great essay from any mom or dad dealing with Autism. Click here to view.

Apr 21, 2009

TROUBLE IN RIVER CITY: MR VS. AUTISM


Today we received all of the paperwork, diagnoses, and recommendations from the ISU students and professors. It took me an hour just to read through everything.


The psych professor just gave him the diagnosis of Severe Mental Retardation, like I mentioned before, but did not put anything in the paperwork about Autism. Shouldn't they look at our family history???


Both Bill and I disagree with this diagnosis, and after reviewing the documents, we believe the IQ test to be inconclusive. How can someone give an IQ test to a non-verbal child? How can you correctly evaluate a child in just two hours? We've had Ryder for 5 and a half years--they see him for 2 hours and decide a "diagnosis" that he will carry with him throughout his school years and throughout his life...


Something to take note of: If the schools use Severe MR as his "diagnosis" then THEY won't be held accountable if he doesn't learn anything in the school setting. They can just blame MR. The schools don't have to provide as many services, or invest as much effort with an MR diagnosis. We are going to ask for another evaluation, and get this one lifted.


Ok, so get this: Tonight, I was with the older boys at their special needs gymnastic class while Mercedes was downstairs at home, and Bill in the bathroom. Bill said he was watching Ryder up until the bathroom called. As soon as Bill turns his back, Ryder snuck into the kitchen, spied Hunter's birthday cake on top of the stove (it was pushed way back against the backsplash); pulled out the bottom drawer of the oven, stood on top of it, reached for the cake (he is NOT supposed to have because he is GFCF and he KNOWS IT) and he dug in and began devouring it with all of the happiness in the world. He craves gluten and can smell it a mile away! He got it all over the floor, his clothes, face, hands, etc. I wish I had a picture.


By the time I got home, Mercedes was cleaning up the mess and Bill was cleaning up Ryder. Ryder saw me and knew he was in trouble. He came right up to me with his hands outstretched wanting me to pick him up. He started whining and I talked with him about what had happened. He knew he was in trouble. I told him his tummy was going to hurt now. And sure enough...it did. He started having a lot of gas and pain. So tell me, does a Severely Mentally Retarded child figure out how to pull a drawer open, climb up and reach a forbidden item, then feel regret for what they did? I just don't get it.....Someone help me figure this out.


How do you explain all of the autistic characteristics, mannerism, behavior, etc.?


Whatever. I'm going to bed.

Apr 20, 2009

DRAMA KING
















I was called upstairs by Bill and Sadie who--upon arriving--told me to be very quiet and follow them outside. They were trying to contain their giggles. Lo and behold, there in the driveway, I spotted Hunter and all of his drama:

What he was trying to do is beyond me.

As I turned to go back inside, I noticed the costume box was in disarray in the garage.

Yip.

Nothing surprises me anymore.






















Apr 16, 2009

LOOSE SCREWS AND CROSSED WIRES


I was taking the boys to gymnastics (taught by an OT) when I noticed Mason sneaking something out of his pant's pocket and slowly putting it into his mouth. Then I saw what it was and laughed a good laugh: Tater Tots. Just like Napoleon Dynamite. I would bet that Napoleon is on the spectrum somewhere.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

The other day I was thinking about all of the things that the boys have broken throughout the years, that had something to do with their fine motor skills/sense of body-in-time-and- space/awkwardness/OCD/frustration and I came up with a list:


Antique baby dress--Hunter tried to put it on and ripped the delicate fabric
Laptop--Hunter put a magnet on it
Clock--Hunter
Breadmaker--Ryder pushed it off the counter
George Foreman grill--Ryder pushed it off the counter
Books--Ryder bites on them CD's, DVD's--Ryder chews them, Mason can't get them out of the packaging and breaks them
Ceramic tile--Ryder and I don't know how...
Bathtub finish--Ryder bangs objects on it
Casing around windows--Ryder flicks the blind cord back and forth very fast
Trampoline--Hunter
Umbrellas--Hunter
Plants, flowers--Hunter and Ryder
Computer screens--Hunter with the cat
TV screens--Hunter with a hammer
Windows--Bill and Ryder Telephones--Hunter and Ryder, both cases involved toilets
Lots of toys--Hunter and Ryder
Lots of spilled cereal boxes--Hunter, Mason and especially Ryder
Chairs--Everyone
Arm--Hunter tripped over a toy shopping cart
Light bulbs, lamps--Hunter, Ryder
Tea set--Hunter remembers this one (I don't)
Ceramics--Hunter and Ryder Walls--Bill Head concussions--Bill (I've lost count) He usually runs into something accidentally, or one of the kids headbutted him when they were a toddler, or basketball induced


Right now, I'm looking at our office chair that has bite marks on the arms and the back is falling off due to a lost screw. I've asked Bill to screw it back together, but the timing was wrong. He was too engrossed in a project on the computer. *Asperger's* Of course, I can fix it. But I'm always fixing things and that is something Bill can do and then he will feel like he did something right for once, so I let him. I just hate being patient about it.


I'm sure these aren't the last of the broken things, but it's good to be reminded now and then that these are just things, they can be replaced or fixed. As much as I try to "fix" my children and hubby, I need to remember they aren't exactly broken. Just wired differently...which reminds me, a month ago, Bill was switching out some outlets (I thought an easy job) but when I went to turn on the garbage disposal, the fridge would turn off. Typical. Another day in the life of loose screws and crossed wires.

Apr 14, 2009

THE DERBY BROTHERS

Here's a pic of Mason and Hunter at the Pinewood Derby which they both shouted an authorative "NO!" when asked if they wanted to do it again next year. (I responded with a silent sigh of relief.)

Apr 10, 2009

KNIGHTS OF THE ROUNDTABLE

We arrived right on time and were brought into a basement room with a large table. Surrounding the table were fifteen people all hydrated from their water bottles that lay on top. Greetings were made, seats were taken and cell phones turned off. I felt like we were meeting knights at the Roundtable. The head speaker, a student studying social work, began reading Ryder's case history.

Time passed, reading commenced and then it was the Psychology Department's turn. I prepared myself for the worst. I've been preparing all week to face what they would say. I don't even like to say it, or type it, in fear it would be true if I saw it written in words. The words stung me deep in the heart, even with my guard up. "Severe Mental Retardation" they said harshly, unaffected. "He's at the level of an 18 month old."

I managed to maintain my composure; and act professional, mimicking their faces.

"How did I get here?" I asked myself silently. For the last five and half years I've worked hard, taking Ryder to different therapies, trying different interventions, praying hard every day for this sweet boy. I know there's a reason for this angel boy to be in our home. I wish I had the answers. I try really hard not to ask the Lord why.


The Knights were all very professional; all taking their job seriously. The one thing they forgot was remembering that parents have feelings, hopes, and dreams for their child, and being "retarded" isn't one of them. Isn't the PC term "Cognitive Impairment" now anyway? It sounds a little more gentle to me. He still displays autistic tendencies, but they changed the diagnosis to Autism being secondary to MR.

They focused, of course, on everything he "doesn't do" or "cannot do" or "won't do".
But he DOES have better eye contact, better attention, and less pain, since implementing the GFCF diet, I thought to myself. He pointed for the first time ever- two days ago. And last week he went potty in the toilet for the first time. And at school yesterday, he said, "I want" to the teacher--very clearly. It's so easy to take for granted that a child's ability to learn is a gift.

A mother lives for their child to be successful. Even if the success is just looking at me for 3 seconds-into my eyes. Recognizing me. Yes, I am your mother. I exist.

As I type this, I can hear Ryder upstairs giggling to himself in his room. Or is he really alone up there? He has brought a piece of heaven to us, and continues to bring it amidst the trying times and challenges. I know angels surround him and they are always welcome in our home.

Apr 9, 2009

THE POW WOW



So today, I took Mercedes to the orthopaedic doctor, and he knew right away what her problem was. So tell me why we had to go down to Salt Lake City to Primary Children's Medical Center, for an x-ray and MRI, **twice** when all the while we could have just stayed here? Again, a doctor problem. Instead of what they thought was Juvenile Rheumatoid Arthritis, she has PatelloFemoral Pain Syndrome which is common among 12-16 year old girls because of their body alignment, knock-knees, and changes in their hips, etc., as they grow. He recommended intense physical therapy, and said it should go away by itself the older she gets. If not, she may have to have a lateral release. (Bill had that done too, in college, and I guess it can be genetic). Now we can breathe a sigh of relief and Sadie can start physical therapy with Ryder this Summer. We should just hire live-in therapists. That would make things easier. Why do we always have medical things happen to us?

The latest on Ryder: He was invited by Idaho State University to participate in a collaborative type of process (I can't remember the name) where the grad students evaluate him, study him and provide their ideas, input, and recommendations along with their professors. Last week Ryder had testing every day. He tested with the Psychology students, Occupational therapy, Social Work, Nursing, Audiology, Speech and Language, and the Special Education Students. It was a busy week.

Tomorrow we all meet together for the big Pow-Wow and get the results and recommendations and diagnoses. One of the grad students warned me that their might be some arguments concerning their thoughts/recommendations for Ryder, so to be prepared for that. She also warned me that the Psych professor will probably diagnose Ryder with MR (mental retardation) and not Autism. I will definitely have something to say about that.
I have issues with this certain professor already because five years ago before we knew that any of the boys had autism, we took Hunter in to him to be evaluated because this professor was referred to us by our pediatrician. He said, "No, Hunter does not have autism. He just has behavior problems and you need to learn how to discipline him." He totally disregarded anything I said about his sensory difficulties, and then pointed to Ryder who was a baby at the time, and said, "I'd like to test him for MR." I remember holding back the tears--being so angry and infuriated and helpless at the same time; it took all I had just to stay in that room. Sometimes you just feel so beaten. I don't want to turn into one of those people who get ticked off at everything because "life" has dealt them a hard blow. These struggles are helping me to be more assertive and not so passive all of the time. I think I am even gaining some self-confidence.

I'll blog more about what happens at the Pow Wow later. I hope I can sleep tonight.










BEING GREEN

THE CUT-OUT KID STRIKES AGAIN!

Ernie and Oscar learn they like different things-great for kids on the Spectrum!