Dec 15, 2010

No Room at the Inn


In some respects I can understand how Mary and Joseph felt as they were turned away in Bethlehem; after knocking on every door only to be told, "Move on, there's no room here".  

Mary was laboring and heavy with child.  A donkey ride would not provide much relief.

While my labor is of a different sort, it is still just that: Labor.  Hard and difficult, and on some days brutal--sometimes the only relief I find is a kind word or smile from a random stranger, recognizing that I do exist.

As a mother of four children with special needs and a husband with a now recognized disability, unable to work, our path is less travelled.  I am the donkey bearing the burden of modern day therapies, special diets, medication management, and seeing that society accepts them for who they are.  My goal is to help them be a productive member of society someday.  

The road is dusty, and not many have been here before.  My back is sore, my feet hurt, but I plod along just as the donkey that carried the Christ child in Mary's womb, pressing forward.

On particular trying days,  I wonder if it is worth it.  

Anyone who has a child with a disability can attest to the constant  stress and worry it brings.  The grief process visits often and sometimes stays for dinner.

And then I am reminded of our Savior who bore the burden for All. 

Years ago, children with disabilities would have been institutionalized because there was no room for them in society.  I still see this today, but in a different sense.  In schools, the 'least of these among us' are in small closets or halls because there is no room for them and not enough funding to give them the education they need.   A lot of parents do not have the energy, time or money to put up a fight.  How can I expect the school system to ease my burden when they have to see to the needs of the majority of the children?   Perhaps they do the best they can, but it's still not sufficient for the child with special needs.  

As a mother, it is my job to help my child navigate the world and fit into society.  It is my job to see that their needs are met, that their physical, mental, emotional, financial, and spiritual needs are being nourished.  That job becomes difficult when you struggle with the very basics of everyday living.  Food on the table, clothes on your back and shelter overhead are your number one priorities.  Of course, this in and of itself, separates you from most other people.  

Sometimes opportunities are placed  before us and we don't recognize them as a way to serve.  Perhaps that child or person with a disability or mental illness is our path to learning and growth.  It is not their fault, they did not deserve this.  They are here to teach us about unconditional love, but it is you that needs to open that door.

At this time of year when we reflect and contemplate the birth of our Savior, I ask that you seek out a family struggling with mental or physical disabilities.  Let them know that YOU know they exist.  Stop and think what our Savior would do with the "least of these among us".  They would be the first that the Savior would welcome to his knee, this I know.  These people are  miracles who continue to amaze me with their insight and unconditional love, in spite of their own difficult challenges. Because of this, my so called "burden" is a joy to carry. 

Let them know that with YOU, there IS room at the inn.

Dec 4, 2010

SPEND A WEEK IN OUR LIVES




When I received our schedule for this coming week, it hit me for the  first time that this is A LOT of therapy.  So I thought I'd show the world what a week in our lives is like.  I'm not doing this to complain, just to raise awareness..  It has become our lifestyle, I guess.  You get used to it.  Add on top of that Scouts, church activities, choir practice (for Hunter), Bill's PSR with another agency, driving four kids to three different schools (no busing) plus Mercedes is now taking two classes at an entirely different high school (which means she needs a ride to and fro because of budget cuts in the school district)  and it makes my mind explode. And the wallet. ;)

Bill
Thu 12/ 9/2010
4:00-7:00 Dr. Traughber, Psych Testing

Hunter
Wed 12/ 8/2010
1:00-3:00 Dr. Traughber, Psych Testing

Thu 12/ 9/2010
4:00-5:00 Tyson, Individual Therapy
5:00-5:10 Rachel, Pharmacological mgmt
5:00-6:00 Dr. Gibson, Family Therapy (Hunter will come in about 10 min late from Rachel)

Mason
Tue 12/ 7/2010
4:00-6:00 DT Chad
6:00-7:00 Tyson, Individual Therapy
7:00-8:00 DT Chad 

Wed 12/ 8/2010
3:00-5:00 Dr. Traughber, Psych Testing

Thu 12/ 9/2010
4:00-4:45 DT Samantha
4:45-5:00 Rachel, Pharmacological mgmt
5:00-6:00 Tyson, Individual Therapy
6:00-7:00 SLP

Fri 12/10/2010
4:00-7:00 DT Chad 

Sat 12/11/2010
3:00-6:00 DT Chad

Ryder
Mon 12/ 6/2010
1:30-3:30 DT Kaeli
3:30-5:00 DT Jessica
5:00-6:00 SLP
6:00-6:30 DT Maegan 

Thu 12/ 9/2010
3:45-4:00 Rachel, Pharmacological mgmt
4:00-5:00 Jamie, Individual Therapy
5:00-6:00 OT
6:00-8:00 DT Kelsey

Fri 12/10/2010
1:30-7:30 DT Kelsey 

Sat 12/11/2010
10:00-4:45 DT Kelsey

Stephanie
Tue 12/ 7/2010
9:00-11:00 Dr. Gibson, Individual Therapy

Nov 24, 2010

THE ART OF USING A FORK



Ryder has really been working hard at learning how to eat independently using utensils.  Above is a clip of his triumphant stabbing of a helpless mandarin orange.  He loves to pose for cameras too!

Nov 20, 2010

Thanksgiving Jokes


What did the mother turkey say to her disobedient children?

If your father could see you now, he'd turn over in his gravy!!

Nov 3, 2010

ALL I CAN HANDLE: I'M NO MOTHER TERESA by Kim Stagliano

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I just love this girl. Let me introduce to you, Kim Stagliano, mother of three beautiful daughters, who are on the Autism Spectrum. I met Kim years ago when I was in my research mode online--trying to find answers to my questions concerning our boys--who are also on the Autism Spectrum. I quickly found that Kim had a great sense of humor and she totally "got" it. She understood what we Autism moms go through every day. I love reading her advice, her views, and I know I will enjoy reading her just released book, All I Can Handle. I'm so excited for it to come! It can be purchased here.

In her own words--"You won't need a Prozac to read it!"
Here is a link to an excerpt from the book.

Oct 27, 2010

LITTLE BOY LOST: SCARY


Last week, dear hubby and I attended Pocatello's Haunted History Tour. We also attended last year and learned some things that made an experience that happened to us make complete sense. And without further ado, I will tell you our "ghost" story that we shared with Southeastern Idaho's Paranormal Organization (SEIPO), in which they shared with the community during this year's Haunted History Tour. My name was not mentioned during the tour, but for you lucky readers, it is from yours truly.

Seven years ago, Mason was almost four years old. As a family we went to Ross Park in Pocatello, Idaho to a cousin's birthday party. All of the cousins were playing around in the lava rocks. Soon it was time for cake and ice cream. We called the kids, but could not find Mason. We searched, hollered, called, yelled, screamed, and looked high and low for him. All of us split up. No answer.

45 minutes had passed and I was in a panic. I felt like we had done everything we could. I started thinking the worst and decided it was time to call the police. But before I did, as a family, we offered a prayer and asked the Lord to help us find Mason.

Immediately after closing the prayer, someone turned around and spotted Mason sitting on a large rock only 20-30 feet away from us.

Our prayer was answered. I was so very grateful.

I was emotionally exhausted and decided to leave early. I gathered all four little kids into the car. (Our youngest was not quite one yet, and was not diagnosed with Autism yet; but we knew he had it). On the way home, I released some frustration toward Mason and blurted out lots of questions. "Where were you?" "Why didn't you come when we called?" "What happened?"

Mason, at the time, struggled with his speech. He only knew 3-4 word sentences and those were garbled words. He took Speech Therapy twice a week. This was before we knew he also had Autism.

Mason responded to my insistent questions in a quiet voice and used a word I had never heard him utter before. He said, "Indian helped".

I thought that was strange, so I tried to prompt him to tell me more, but of course, he didn't.

Later that evening I wrote about it in my journal.

Fast forward seven years and I learned that Ross Park was a semi-permanent camp for Native Americans a long time ago. There are even petroglyphs still in existence there today.

I thought about the story and the history of the place and about Mason and how I didn't even know he knew what an "Indian" was. Everything fell into place. Why not? I thought. Why wouldn't the Lord send a spirit who may already be around in the area to help a lost Autistic boy?

And that is our story. SEIPO interviewed me and it was a lot of fun especially around this time of year.

Stay tuned...I have another story about the local cemetery. :) I haven't been back since.


Oct 20, 2010

GRANDMA'S SECRET RECIPE



We just got over a five day hospital stay for our 3rd kid who has severe encopresis. It took FIVE whole days to clean that guy out! He broke the record. Finally, the dr ordered a milk & molasses enema which did the trick in a matter of seconds. Who knew that in the end we would turn to our father's of old. :) Or grandma's of old, if you will.

I am going to mix my own potion and deliver it via the Anal Canal if needs be next time--to fore go the next hospital stay. :)

******************************************************************
Bill and I were asked to be on a panel entitled, "Living and Learning with Autism" at Idaho State University last night. It was an educational experience and kind of fun, if I am to be honest. There were over 95 people there including those from the satellite feeds. I was nervous, but it helps to be partially covered by a table. :) I had my answers all ready and typed and the image of the audience in their underwear really helped relieve my anxiety.

I am excited because Dr Temple Grandin will be speaking at ISU March 9th 2011. And it costs NOTHING. Mark your calendars now!

Wish I had pics to post, but nothing for now.

Oct 14, 2010

SUPPORT AUTISTIC ARTISTS


Looking for cute notecards for Christmas or any occasion? Well look no further.
Check out Hunter's art here. He receives 50% of the proceeds and you are supporting
other autistic artists as well.



Oct 7, 2010

POOP MAGNET


Everyday turns up another poop story.

We're getting good at cleaning up bathtub poop. There is a small window of time where we can leave Ryder in the bathtub to play before he decides to drop friends off in the pool. No more than 10 minutes, I'd say.

It gets harder when you have to give your ten year old an enema without gloves. I couldn't find any gloves yesterday. The last I remembered, he had a cute bum. Of course that was nine years ago.

He may have to be cleaned out up at the hospital again. We are trying to avoid that though. He was x-rayed yesterday and his gut is full of poop. He has a rock hard mass about the size of a softball blocking everything from coming out. Then the liquid stuff seeps around the hard mass, causing stooling accidents, unbenownst to the sufferer. The colon is so stretched that the nerve endings cannot "tell" when it is time to go. This is called Encopresis and is common among kids on the spectrum.

This guy is very self conscious and this is a great embarrassment to him. The eleven year old too, but his tactics are different. Eleven year old doesn't mind sitting in it all day at school because he's too embarrassed to tell the teacher.

Consider yourselves lucky if you escaped the poop years unscathed. We're still going through it. I wonder if it will ever end. No pun intended.

Oct 1, 2010

RYDER EATING SOUP: A BRAND NEW FEAT




I am so excited for this little guy! He is learning faster with his new therapist, Kelsey. She has been amazing--so patient and consistent--and he really does well with her. YEAH!!

Sep 21, 2010

A LITTLE DROP OF WATER



A poem I wrote for Hunter's Speech Festival last year:

What kind of world would it be
if water didn't exist naturally?
We would have cracked lips and hands
and Summers without any lemonade stands.
Our hair would be caked with grease and grime
and our toilets would be---oh never mind.
We wouldn't have oceans with all of those fish
Or water fountains to make that one special wish.
There wouldn't be lakes to ever go swimming
We would just lie in a dirt hole-
and that's just the beginning!
There wouldn't be sleet or hail or rain
Not even the Snowman would be the same.
Imagine what mysteries we could uncover-
the mermaid, the Loch Ness, maybe another.
But what about the penguins and the Eskimos?
What could they do if their toes weren't froze?
No snow globes, no Icee's, no white water rapids,
no movies like Jaws or Christopher Columbus.
I've come to the conclusion that's better than none
Water is more than just plain, old fun.
A little drop of water falling from the sky
becomes a part of something greater
than just you or I.
A little drop of water
small as can be
can save a life eventually.

Sep 19, 2010

I AM SPENT


We have switched DD agencies and all of the kids are doing some testing now.

We have found that Mercedes has executive dysfunction or brain damage to her right parietal lobe. This came as quite a shock. She had extensive testing done, and they ruled out some of her past diagnoses such as ADHD and CAPD. She is a smart girl, but her left side of her brain is over compensating for her right side. This explains why she is so good at English and Vocabulary, but not so good at math. A possible EEG is on the horizon.

Ryder's challenges mimic Angelman's Syndrome or Prader Willi Syndrome. He will need another genetic chromosome test to determine.

Mason's anxiety continues to climb. He gets ready for school 1 hour ahead of departure time and paces the floor until then.

Hunter's endless questions bombard the family at all times. He craves food constantly and does not like therapy.

William silently struggles with activities of daily living. Only if you lived with us, would you be able to tell. Or smell, let's put it that way.

I am spent. ...Trying to figure out what the future holds...and trying to keep it all together.

Sep 3, 2010

A BALANCING ACT


There is a fly buzzing around my head. And no, we don't live in squalor. Although as I look around, the office could use a good pick me up. :) I would like to be a fly on the wall to see how my kids are doing in school. They started school recently. Well, three of the four started. Mason stayed home because he was too drugged up to even open his eyes. I have debated for a year now whether or not to try an anti-anxiety medication with him. We have tried two during the summer and they just make him way too tired and sleepy. Even at the lowest dose! And this kid is 5 foot 4 and weighs 130 pounds. Finally around 10am the Prozac started wearing off (we gave it the night before) but he is getting so stuck in routine especially when it is coupled with anxiety that I couldn't get him to go to school late, even if I walked him into the class. He is now acting like he did in preschool. If I didn't play "chase" outside around our car every morning before the bus showed up, our morning would be spent dealing with a major meltdown which also involved the bus driver. So, in the famous words of Carol Anne from Poltergeist, "They're Back!"

This morning, in order to be very early to school so that he has enough time to play before school starts, Mason picked out his older brother Hunter's uniform, poured him a bowl of cereal with milk, got Hunter's backpack ready, and kept prompting Hunter to hurry. Then took Ryder out to the car and buckled him up. This kid means business.

Hunter and Mason are so very opposite from each other -- I sometimes wonder if they really came from my womb. They are meant to be brothers, they really balance each other out.

Aug 8, 2010

IT IS WHAT IT IS...

Four weeks left until school starts. Then the fun really begins. I need to amend Ryder's IEP, that is the first item on the agenda. I wish our area had more choices when it comes to schooling for kids like Ryder. 2nd Item on the agenda is meeting with the special ed teachers in each school, and making sure we are all on the same page. 3rd item, making sure the lunch ladies are in compliance with Ryder's gluten and casein free menu...then I need to decide if Ryder will be riding the bus, or will I be transporting him everywhere. So many decisions. I just want to make wise decisions.

Ryder is definitely understanding us more and doing more sign language more often. He is doing better at self feeding too. It's been wonderful.

Today during Sacrament meeting in church, when all is quiet, Ryder farts long and hard on a metal chair. We sit in the very back of the church, but it was so quiet today you could hear a pin drop. And then he laughs and he laughs hard.

I just don't get embarrassed anymore. That's what Autism has taught me. It is what it is. I guess that's why people don't sit by us very often!

Jul 1, 2010

HBOT THERAPY




Ryder has had over 30 Hyperbaric Oxygen Treatment dives. His very first day, after wrestling with him to leave the oxygen helmet on, he yelled, "PUT ME DOWN!" three times. We were all amazed and had never heard a three word sentence escape his lips before. Does he just need to get mad enough? Is that the secret: motivation?

After one week he began going number one and two in the toilet. He is able to sit by himself on a chair, or the potty without getting up. He is more interactive, which is also seen by his therapists. He now comes when I call him. He will put his hands down when I ask him to. Relunctantly, yes, because oh! How the sound of a cereal box spilling all over the floor thrills him!

His understanding is clearer.

He seemed to hit a plateau these last couple of weeks, and then just a week ago he started answering yes and no when I'd ask him a question. Of course, it is a whiney drawn out answer, "y-y-ea-h" and "Naahh", hey, but I'll take it. He's
trying.

I didn't expect this kind of success with HBOT. It's hard to keep my hopes up sometimes. I'm very enthused about his progress and hope it continues. Also, his tummy pain has lessened a lot. We used to give him Gas X at least everyday. Now, it's once a week.

It's truly amazing!! If only insurance companies realized how much this could help not only kids with Autism, but people with traumatic head injuries, Diabetes, Stroke, Cerebral Palsy, Macular Degeneration, chemical exposure, etc...it's all about big business, unfortunately.

May 29, 2010

THE GATE IS OPEN!


"Ryder has opened the gate!" yelled Mason, our nine year old son.

These words struck me not because he opened the gate and was about to get into trouble, but because Ryder really did open the gate. He opened the gate and let Autism into our life.


We were so clueless before. Autism has made me grow so much. I feel like I am an entirely different person now. Everything has more meaning. Life is not shallow like it used to be.


I am grateful for the little things and wished that time could stand still. I appreciate the moments that capture our hearts. The quick smirk Ryder makes when he thinks no one is looking. The squeal from his lips and insistent clapping when he learns something new. The wonder in his eyes as he watches a bubble bounce around in the wind.


I am also grateful for the knowledge that I have gained. It has given me depth. I actually do have an opinion now, because of experience. Maybe this comes with age, too.

Autism has brought a sense of purpose into my life. I can help others now.


I appreciate moments to myself like now; when the house is quiet and I can do whatever I want. Until the rat race begins in 4 point 3 seconds
...

May 24, 2010

NATIONAL AUTISM RESOURCES


I recently came across a great site that sells fun items for kids on the spectrum. It's called National Autism Resources and they also have a blog that is awesome, too. They have sensory integration products, books to help with potty training, and tips for sleeping issues.

And if you are tired of your child chewing everything into oblivion, try the P's and Q's or the chewy tubes. Ryder loved those! .

Here is their statement:

National Autism Resources was born from a dream to make the world a little easier for people living on the spectrum and their family members. We strive to empower our community by providing excellent information, helpful links, and affordable books, games, toys and therapy products for people on the spectrum.

So mosey on over and have yourself a look-see. These would make great gifts, too!

(By the way, Ryder loves the Chewy Tube as evidenced by the photo above, which you can purchase at National Autism Resources.) :)

May 6, 2010

WHEN CARL MET GEORGE

Take a look at this Arthur clip on PBS. It's a cartoon explaining Asperger's Syndrome to kids. It wouldn't hurt adults either, I don't think. :)

May 4, 2010

THOUGHTS ON HIGH SCHOOL, ANXIETY, AND BULLIES--



My 20 year class reunion is fast approaching. Did I go to my 10th reunion? No. Did I go to my own graduation? Yes. Was I seated in cap and gown among my fellow classmates? No. I remained hidden from view at the top of the gymnasium on a bleacher, dressed in civilian clothes. I had graduated early and did not want to walk among my peers. High school was hell for me.

Recently I became reacquainted with a friend (thanks, Facebook) whom I knew in high school and with whom shared my same disgust for the bullying that took place there. We were both bullied. She dropped out of school in 10th grade, (later getting her GED), and I dropped out of life. After years of anxiety, depression, and being bullied, I was hospitalized during my senior year. I just couldn't take it anymore. High school culture was killing me.

I don't blame anyone in particular. In fact, I feel sorry for the bullies. High school is a rough time for all teenagers. We were all so full of teenage angst and not mature enough yet to handle our feelings of inadequacy, belonging, emotions, etc.

I wouldn't go back if someone paid me. And believe me, money is quite a motivating factor right about now.

How I wish I was different back then. That was the 80's. Prozac was brand new. I wonder how high school life would be now that I am on Zoloft? Would it be much different? Would I be able to tell that bully to stop copying off my paper instead of just sitting there? Would I be able to raise my hand in class to answer a question? Would I be spared the silent panic attack that came during Mr. Yazzi's science class? My anxiety has always been on the forefront and has kept me from living life to its fullest. But it's also comfortable. Or is that my anxiety talking?

Being bullied was the little seed that was planted deep within my soul and grew to this compassionate tree much like a weeping willow. I bend when the wind blows; but my roots have found their strength in experience. To the kids that like to bully: come play in my branches, or my children's branches, but always remember, I make a nice whip.



BEING GREEN

THE CUT-OUT KID STRIKES AGAIN!

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