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.

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.

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.

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.

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.)

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.

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.

"MISSING PIECES"--THE STORY BEHIND THE SONG

By Tim Calhoun

On December 11, 1999 my youngest son, Nathaniel, came into this world, a perfectly normal beautiful gift from God. With pride I watched him meet all the normal developmental milestones. By eighteen months of age he was naming TV shows and calling his brothers and sisters by name. But he was also becoming a constantly sick child, going to the doctor two to three times every week. There were unending fevers, ear infections, and colds. He cried constantly, had a bloated stomach and continually covered his ears with his hands. Shortly after receiving the MMR his left eyelid began to droop and his language disappeared. He no longer made eye contact, could not attend to any task, and developed many typical autistic behaviors. Local doctors finally recommended a psychological exam at age three. The psychologist was the first to mention the “A” word. A team examination at the University of Arkansas Children’s Hospital in 2003 resulted in the official diagnosis of Autism.

When Nathaniel was three I became a single parent with sole custody of my son. He was making no progress in Pre-K. I was desperate to find help for my son. Through the Internet I located the NE LA Autism Society and arranged a meeting with Lynda Huggins. I was literally in tears as I asked how I could help my son. After discussing Nathaniel’s history Lynda urged me to take my son to a DAN! doctor. She told me about an upcoming Mini-DAN conference in New Orleans. I attended and met Dr. Stephanie Cave, a DAN! Practitioner from Baton Rouge. She agreed to see Nathaniel. In February of 2004 Dr. Cave did extensive testing on Nathaniel, prescribed several daily supplements and said that I should put him on a Gluten-free, Casein-free diet immediately. Within days of starting the diet there was improvement and school reports reflected progress. In April, when test results were completed, Dr. Cave started Nathaniel on a chelation regiment. For many months, it was not an easy or pleasant experience for either Nathaniel or me. I had to literally hold him down to get the pills down his throat. But the progress I saw motivated me to follow Dr. Cave’s instructions to the letter.

I was attending monthly meetings of the local autism support group and began to feel that I was not alone in this battle. When I mentioned my lack of success with potty training, the group suggested the wonderful book/video & bear entitled “It’s Potty Time”. Amazingly after watching the video and reading the book, Nathaniel trained himself within one day! I captured his joy at success with a Polaroid camera and that picture served as a reinforcement, which he took with him to school. I began to realize the communication power of pictures! Since Nathaniel could not express his needs or desires verbally, I cut pictures from magazines for him to show me what he wanted to eat, to do, etc. Within a few months, his language began to return. It was as if he picked up right where he lost his words. His first clear complete phrase was “I love you Daddy” - what a wonderful reward for the months of special diet and lots of pills! School reports included “speaking more and more.” By the end of that school year the school reported “You need no progress report to tell you how well Nathaniel is progressing.”

Imagine not having the ability to express your likes or dislikes, your fears or joys, what you do or do not want to do. How frustrating it must have been for my son. But he found ways to get his point across – like throwing three pairs of new shoes (which he obviously did not like) out the car window as he traveled in his car seat behind me. He traveled with me during the summer months and once stripped butt naked in the middle of a business meeting at a fancy restaurant. During our travels he knew exactly where he had visited a Toys ‘R Us store - months earlier and pointed excitedly as we approached the correct exit. He had so much to tell me – but could not speak the words. And there were many humorous times. He decided the Blues Clues potty seat resembled a hat and a hacksaw was required to remove it from his head. The noise of my windshield wipers was evidently painful to his ears so he simply removed them (with a screwdriver) and hid them from me. Yes he found ways to tell me many things.

This past December Nathaniel celebrated his sixth birthday. You could not have picked him out of the group of kids as a child with autism. He was just a normal 6-year-old joyously tearing into gifts, eating lots of pizza and cake and playing appropriately.

Throughout the past three years I have been blessed with wonderful support from family and friends and the skilled medical guidance of Dr. Cave. Nathaniel’s grandmothers have followed my every direction for diet and pills and each instruction for working with him. In the last two years (and since six weeks after beginning chelation), Nathaniel has had only one doctor visit. That was for the removal of his tonsils. That doctor voiced his opinion that Nathaniel’s droopy left eyelid might have resulted from a minor stroke (at around age 18 months).

There were many stressful times. It was especially difficult as a single parent to hold a job requiring extensive travel, arrange all the doctor visits, follow all the doctor’s instructions, and endure the bizarre behaviors. Many times I felt that I was at my rope’s end. After one particularly long and exhausting day, when I finally got Nathaniel down for the night, I sat down and began to write. The words that flowed from my mind that night – “Now I lay him down to sleep, I pray Dear Lord my son could speak” - surely came from above. As I thought about what I had written I decided to contact my life-long friend and recording artist, Mark Leland. Together we expanded upon those words to write the song “Missing Pieces”.

These many months later as we are completing a video of “Missing Pieces” I know that God has led me through this experience for a purpose. It is my hope and prayer that the song will generate funding to assist families in obtaining the biomedical treatments that can help these children. My miracle son is proof that recovery is possible. The song tells of the pain of watching a child slip into the autism abyss and of a parent’s determination to pull him back. Now I know there are so many more like Nathaniel who need our help to win this war. Together we can help them make it through. The missing piece is me and you.
- - - - -

A LITTLE OF WHAT'S HAPPENING...

There is going to be a lot of interesting info on TV this month about autism. Check out Larry King, Ellen, Bonnie Hunt, CNN, and the Discovery Health channel and here. These are just a few that I know of. Also, look here to see what the rest of the world is doing today.

WELCOME TO AUTISM AWARENESS MONTH

Just so you know, autism is treatable. Ryder went potty in the toilet for the first time ever yesterday and we weren't even trying. I need to remember that he understands more than I know, but just can't express it. "I sound my barbaric YAWP across the hilltops!"~DPS

Check out this here: Kim is an awesome mom of three girls on the spectrum. She is such an example to so many moms out there struggling with autism. She's a warrior.

More later. I've got to go find something GFCF for Ryder to eat, pick up the kids early from school, go to Speech and OT, and home again, home again, jiggedy jig. Then homework, scouts, school program, and soccer practice.