Max's 3rd Birthday Party

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Mother' Day 2011

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TuTus For Tots

Jenee and I have started making tutus and assesories for babies to help us make a little extra money. Here are a few pictures of some I have made so far.

ABCn'D Autism Center Halloween Party

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Hallowen 2010

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2010 Walk Now for Autism Speaks: Kansas City - General Donation

We will be doing the Walk Now for Autism Speaks in Kansas City on October 16th. If you are interested in walking with us or would like to make a donation please see the website below.

2010 Walk Now for Autism Speaks: Kansas City - General Donation

From Jenny McCarthys book Mother Warriors

The other day I arrived at work to find a present from my friend Kim. She had gotten me Jenny McCarthy's book Mother Warriors. Jenny McCarthy's son is autistic and she has written a book based on her personal story and how other families have helped "recover" their children. I'm already half way through it and have really enjoyed reading it. I wasn't really sure what to expect because I've heard people either really like her or thinks she is crazy after reading her books. I think regardless of what you think about her or what "causes" autism there is still alot to learn from this book. So far I have found it to be a great read. This is one of my favorite parts from the book so far.




Welcome to Holland

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland?" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy.

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy a new guidebook. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever, go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.


Written by Emily Perl Kingsley

Max's 1st Day of School

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Therapy Update

Since starting therapy 3 weeks ago and starting his gluten/casein free diet Max is making good progress. His behavior has been much better and he is starting to talk! Last week he said " I did it ! " and yesterday he said "7, 8, 9, 10, 11". We have 3 different therapists that come to the house each week and we are hoping to start him in an autism school shortly. The doctor has recommended 25 hours of therapy a week so we are trying to get first steps to approve him to go the autism school. We are very excited about the progress he has made so far.

Fathers Day Weekend 2010

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Autism

We have found out that alot of people are a little overwhelmed by Max's diagnosis, primarily because they don't understand what autism is. My parents looked up information on this site and found it to be helpful without being overwhelming. Hope this helps.

www.mayoclinic.com/health/autism/DS00348

Autism Evaluation

Many of you have probably already heard but on 6/18 we took Max to see Dr. Hoffman for his autism evaluation. We were referred to him by our regular pediatrician after he failed the short autism evaluation with his 2yr check up. Dr. Hoffman spent almost 2 hrs asking us questions, playing with Max and evaluating him. They really prefer to wait until children are older to diagnose them but if they wait too long they will miss out on alot of early interventions and therapies they need. He diagnosed Max with being on the spectrum. As he gets older we will be able to determine how severe his autism will be. The diagnosis was not a surprise to us. He has been regressing and showing signs of being autistic for the past few months. We feel very blessed that they were able to diagnose him early so that we will be able to get him the early interventions he will need to be successful. We know that we are only at the beginning of what will be a very difficult journey but we know that we will have lots of love and support along the way.

Paradise Park

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Toothbrush

While doing picture flash cards with Max when I told him he had a "toothbrush" he put the flash card in his mouth like he was going to brush his teeth. How cute is that? Well if he can't say what things are I guess he'll just show me what they are.

Stressed!

Before I start this story you have to know prior to this day I called the insurance company several times to find out if different ped specialist were under our insurance. Most of that time was a waste because most of the peds under our plan were booking many months away. So the story begins....
I was very excited to get the news that the pediatrician was able to get Max in to see a specialist at the end of June. I decided to call the insurance company to make sure they would cover his evaluation. The first lady from the insurance told me the physician he was going to see was not in network therefore I would have to pay the entire bill. I was sure this would be more than just a normal office visit charge since they do a 2-3hr evaluation. I couldn't believe my insurance as an RN covers 0% if you use out of network providers. That led me to call work to talk to someone from human resources. Sure enough our insurance covers 0% if you go to someone out of network. So I then asked her to tell me what specialists he could go see. She tells me that the Dr. he is scheduled with is in network and is unsure why the insurance lady told me he wasn't. That led me to call the insurance comany again. They tell me as long as they bill under the Dr. it will be covered but if they bill under the clinic it may not be. That leads me to try and call the clinic but I guess since its new and the staff travels to different clinics in the area the people are not at that location at the time I call. I spend over and hour trying to get ahold of the actual clinic before I get told they don't charge under the Dr. it will be charged under the clinic. So I call the insurance company back and they can't find that clinic in or out of network so they will need me to call clinic back to get the tax ID #. I then have to leave a message for someone who will have to call me back. Get a call later with tax ID #, call insurance back again. I have to talk to a machine every time I call the insurance company back, put in my account info every time and I get a new person every time I call. Guess what.. the tax ID number they gave me is not covered under our insurance. I finally tell the insurance company that I don't understand that if the Dr. he is going to is in network and the hospital that the clinic is under is in network why it would not be covered. They just "really aren't sure". I then not so sweetly explain to the insurance company they need to call the clinic and figure it out then. I explain to them that my child needs to be evalauted for autism ASAP and that if he can't go to this appt no one else can see him until the end of Sept. After wasting three hours on the phone that day and speaking to everyone at Cigna I get told by the last insurance lady that she "thinks it might be covered and if not I can appeal it". Fabulous! I am so glad I pay taxes and pay monthly to have this great health insurance!

Hand Foot and Mouth Virus

After working Thursday night I got a call Friday morning from my mother telling me Max had been up most of the night not feeling well and running a fever. Luckily our pediatrician has urgent care hours early in the morning so we got to take him to the pediatrician right after I got home from work. He got diagnosed with the hand, foot and mouth virus which is a very common virus in children. He has a few sores on his throat which explains why he has been so cranky. Basically you treat them with Motrin and Tylenol while the virus runs it's course. The good news is when I complained to the nurse practitioner about not being able to get Max in for an autism evaluation until the end of Sept. they agreed to make a few phone calls. Before we even got home I got a call saying he had an appt on June 22nd at a new pediatric specialty clinic that has just opened. I also got a call from Children's Mercy hospital later that day and they are sending out some paperwork for me to fill out to see when they would be able to see him.

First Steps

Today the lady from First Steps came out to sign paper work. First Steps is Missouri's early intervention system for infants and toddlers with special needs. We have been referred to them by our pediatrician and our Parents as Teachers educator. Basically unless you have a medical diagnosis like "autism" (or many other diagnoses) the only way they agree to come out and do services is if your child is functioning 50% below their age. Since Max can't get into a specialist to be evaluated to see if he has autism until Sept. we are "hoping" that on June 17th he is considered to be functioning at a 1yr old level in at least 1 of 5 areas. I know it sounds horrible to say we are "hoping" he is functioning as a 1yr old but we know he really needs the early interventions this program can provide and without a diagnosis that is the only way to get their assistance.

3 Year Anniversary

On May 26th Brandon and I celebrated our 3 year wedding anniversary! We went out for sushi and then went to the home depot and bought a deck box. We are quite the exciting couple-haha. We went to the casino and stayed the night on May 30th. We got lucky and got our room upgraded for free. It had a jacuzzi in the the middle of the room, our own bar, a living room and three TVs. We didn't get back to our room until 3:00am and woke up right before check out time so we really didn't get a chance to appreciate our room. Thanks to Pat and Marisue for watching Max so we could celebrate our anniversary.

2 Year Checkup

Max went for his 2 year well child check up on May 28th.

Weight 25 1/2 pounds (20%)

Height 35 1/4 inches (75%)

Head Circumference 20 1/4 inches (95%)

As many of you already know we have been concerned about Max's delay in speech for a couple of months now. Our Parents As Teachers educator has told us that Max is significantly delayed in speech and is regressing in the little speech he already had. He has been demonstrating a few "red flags" that associate him with possibly being on the autism spectrum. I discussed these concerns with his pediatrician at his 2yr check up. They complete evaluations for autism at every child's 18month and 2 year check up. After talking with him about our concerns and the physician completing his evaluation Dr. Graham is referring us to a Developmental/Behavioral Pediatrician for an autism evaluation.

Max's Homemade Ice Cream Website

http://www.maxshomemadeicecream.com/

This is the link to the website for Max's homemade ice cream.

Max, the CEO, would love for everyone to check it out.

Max's 2nd Birthday

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Max's Ice Cream

Brandon's parents have started up a new business that they have named after Max. They are making homemade ice cream and selling it at local events. Here are a few pictures of Max with the ice cream machine.

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Max in the Moon Walk on Cinco de Mayo

Our Family

Our Trip to the Zoo

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We had an exciting day at the zoo. My child ignored all the animals, played in the dirt, tried to sweep the bathroom with the janitor's broom, played on a swing set and played with a puzzle inside. So glad we went to the zoo so he could see all the animals.

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Max likes Grandma's Fountain

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Easter 2010

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Making Easter Cards for the Grandparents

I wanted Max and I to do an Easter craft this year.

I really wanted to dye eggs but was afraid

he would launch them all over the place.

He thinks anything round is a ball. We decided

to make Easter cards for the Grandparents instead. Max was more interested in tattooing himself

than helping me color the eggs for the cards.

I tried to take a picture of the card.

I didn't get the whole thing in the

picture but you get the point.

Bath Video and Pictures

Should I drink it?

Yum! At least its the clean water.

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Toilet flushing addiction under control

Back in January Max developed a fascination with flushing the toilet. Soon this fascination developed into an addiction. He would run throughout the house flushing all the toilets, ALL the time, over and over again. For a while I just ignored it thinking it was a harmless addiction that was causing him no harm and appeared to bring him much enjoyment. However, when I received a $98.00 water bill for one month I decided the addiction must come to an end. Over the past several weeks Max has really cut back on his flushing addiction and we have managed to get the water bill down to $50.00!