Dec 17, 2009
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
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
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
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
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
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:
-Disconnected behavior in public
-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.
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
-- Jennifer Lauck, New York Times bestselling author of Blackbird and Still Waters
Sep 24, 2009
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
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 31, 2009
Aug 25, 2009
Aug 5, 2009
Jul 31, 2009
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.
Jul 21, 2009
Jul 12, 2009
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
Jun 10, 2009
Jun 7, 2009
Jun 3, 2009
May 25, 2009
May 18, 2009
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
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?
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
"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
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
Apr 21, 2009
Apr 20, 2009
Apr 16, 2009
Antique baby dress--Hunter tried to put it on and ripped the delicate fabric
Laptop--Hunter put a magnet on it
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
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
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
Apr 10, 2009
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.
Apr 9, 2009
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?