I’m feeling long-winded today, so I’d like to give you some tips for preparing for IEP meetings, and then I will give you our personal experience below.

5 Tips for a Productive IEP Meeting:

1. Know when your child’s IEP is due! Do not depend on teachers to schedule these, otherwise it will always be a rush job. Put it on your calendar, and start making calls to teachers 30-40 days in advance.
2. Prepare Personal Notes. Write down your observations of progress made at home, current problem areas, and any questions that you might have. Chances are that you will forget the important questions when you’re at the meeting, so go prepared.
3. Invite Everyone! If your child attends any additional therapy, school, daycare, or even just has a babysitter, invite them all to the meeting. You want everyone to be on the same page in regards to your child’s development, and each person can provide a different insight to the progress your child has made.
4. Fight Fight Fight! You are your child’s best advocate. If the plans that are being presented to you don’t make sense, or if you want more of something for your child, don’t give up. There is a possibility that you’ll need to fight your way to the top of the School District to get what you want, but you do what it takes. If you are still not getting what you want, it’s time to find an advocate.
5. Follow Up. After the IEP meeting has finished, make sure that you follow up with everyone who was involved. Your goal is to ensure they all follow through with their stated goals, and sometimes they need a little extra push. Establish regular correspondence through email, notes, phone or even in person.

Here are a few other great resources:

• Tips for a Successful IEP Meeting
• Quick Tips For A Productive IEP Meeting
• Advocacy Tips and Techniques: Ideas by and from Parents and Those Supporting Parents and Children
• Redhead Momma - IEP Day
  

These meetings are not to be taken lightly, and can sometimes be extremely frustrating. Two weeks ago my wife called Colton’s preschool teacher to ask about his progress, and she said, “oh great! You’re on my call list.. we need to schedule an IEP meeting. I just realized his IEP is due in two weeks.” I was immediately upset, as these are legal documents that require input from a lot of different people. We should have been called a month beforehand!! Amazingly though, we got a meeting scheduled within a few days.

Things that went wrong:

1. Meeting was scheduled at the last minute
2. Preschool teacher just noticed a huge leap in social skills the same day as the meeting (coincidence? Doubtful. This was a big red flag for me.)
3. We were informed that because Colton is 5, the school district is pushing him into kindergarten. If we refuse, and put him into preschool for another year, they will not pay for a para or transportation. This is a big issue, big enough for another blog post :)
4. Preschool teacher did not have notes and plan ready for the meeting.

Things things went well:

1. Everyone was able to attend, to include his therapists from Kid Talk.
2. Goals were re-evaluated thanks to great input from everyone, and new goals were established.
3. Very thorough evaluations from each of his teachers and therapists were given.
4. Everyone shared contact information, and made a plan for regular communication.

At the end of the meeting, we all walked away confident in our future goals and extremely happy with the progress that my son has made in the past six months. I feel better about this IEP meeting than I ever have, and it’s because I was able to get all of Colton’s therapists to attend the meeting. They are now communicating daily via email, and it’s been amazing.I’d love to hear any stories that you may have about your experiences with IEP meetings!

Well, scientists at UCLA have recently published their findings that links a specific genetic variant to the disorder. The test focused on the speech delay of children, as the most common early symptom Autism is the lack of speech.

UCLA scientists have used language onset the age when a child speaks his first word as a tool for identifying a new gene linked to autism. The team also discovered that the gene is most active in brain regions involved with language and thought. Interestingly, evidence for the genetic link came from the DNA of families with autistic boys, not those with autistic girls.

Their findings have suggested that this gene, called contactin-associated protein-like 2 (CNTNAP2), likely plays a “key role in the development of autism.” They also found that the gene was most prevalent in families with autistic boys.

“Autism strikes boys three times as often as girls,” said Maricela Alarcon, first author and UCLA assistant professor in residence of neurology. “This finding may partly explain why.”

I’m very excited by this research, and will be following it closely. I highly suggest that you read through the entire article, which was written by UCLA Health Services.

I have created a “team” and will be fundraising for the Minneapolis walk. My goal is $200 from this site, and all proceeds of any kind will go towards the fundraiser. If you can’t make it to the event, but you’d like to donate, please CLICK HERE. We’ll be doing some fundraising in the next few weeks to try and earn our worth, haha.

Seriously, if you are a parent of a newly diagnosed child, don’t miss this event. Your pediatricians only know so much, and chances are.. they don’t know about half of the resources that are available to you. They are holding them throughout the US, check the schedule to see when it will be held in your area. If any of you plan on going, I’d love to meet you! Please contact me via email, and we’ll try to hook up before the walk.

For additional information, here is the official letter template that they gave me, which outlines why the walk is so important.

I am participating in Walk Now for Autism to help find a cure for autism. Autism is the second most common developmental disorder in the United States affecting one in every 150 children born today. Despite some promising discoveries, the cause of autism is unknown and a cure does not exist. Research is crucial. Every 20 minutes another child is diagnosed with autism. Not only must we find ways to improve the quality of life for children and adults with autism, but we also must find a cure, and soon.

Walk Now for Autism is our chance to make a difference in the fight against autism by raising money for autism research and heightening public awareness. Please join me in my fight as I raise $$200 to help fund essential research. I will be walking on October 6th and would like you to support those affected by autism. You can donate to WALK NOW and join my team online through my webpage at www.walknowforautism.org. Donations can also be mailed to Cure Autism Now using the donation form located on my page or send me a check made out to Cure Autism Now. My team name is Help4Autism; please note this on your check and the donation form.

Please join me in my fight against autism. Thank you for making a difference in the lives of the more than 1 million Americans living with autism today.

If you’d like to see more, or are interested in donating, click here!

Sometimes parents just know when something is wrong with their child. Our “inner sense” kicks in, and we’re able to realize that something isn’t right when no one else is.

Unfortunately, this doesn’t seem to apply to many of us who have children that are affected by the Autism Spectrum. My theory is that because our children were born this way (debatable, I know), their quirks are normal to our every day life. These are all things that I had said before the label of Autism came into our lives:

• “Sure my son is a little different, aren’t we all?”
• “Boys sometimes talk later than girls, that’s normal.”
• “He’s just shy, that’s why he sits in the corner at daycare.”
• “He loves his cars, he can just sit there and roll them back and forth all day.. he seems really interested in the spinning of the tires.”
• “It’s kind of weird that he’s so sensitive to the grass, I guess he just doesn’t want to get dirty.”

It wasn’t until someone put all of the signs together, and then explained to me that all of his “quirks” combined were enough for a strong diagnoses, that I finally realized that something was wrong. It rocked my world. My wife and I were in so much shock, that we literally cried for days. Having someone tell you that your child has a learning disability, and that he would struggle through his entire life, is not something any parent ever wants to hear.

After my son was diagnosed, a family member told me that they had a feeling that something was wrong with our son. She was too afraid to confront me about it, because she knew that she could have been wrong and was sure that we would likely become very defensive. I honestly don’t know how I would’ve reacted, but I’m sure that I would’ve been upset at the idea. I wish that she would’ve told me right away though. Her suggestion might have been enough for me to take our son to a specialist. Instead, we learned by mistake many months later.

If someone that you love is brave enough to tell you that they think something might be wrong with your child, please do not get defensive. Step back, evaluate the idea, and even if you still think that nothing is wrong.. take the 2 hours to get your kid evaluated by a developmental pediatrician. Time is truly of the essence, the more specialized help that you can get your child in his early years, the easier his life will be.

On the other hand, if you have family members who doubt your idea that something is wrong.. ignore them. If you feel that something might be wrong, that’s enough! You don’t need a second opinion from family, get your kid evaluated. Morale of the story? It really never hurts to get evaluated. Do it now, so that you can sleep better later.

Well, last week we finally had an evaluation done by a neurologist at the Noran Neurological Clinic in Minneapolis. The doctor had one very important question for us: “What do you expect to get out of having me evaluate your son’s brain?”

• If we were looking for a problem to fix, he wanted to let us know that the chances were very slim.
• But, if we were interested in simply trying to find differences in how Colton’s brain processes information, with the purpose of helping us understand his difficulties, then he suggested we proceed with testing.

We actually went to this appointment not knowing what a Neurologist could tell us, so we were happy that he was going to schedule some tests that may help us pinpoint some differences in Colton’s brain. We scheduled appointments for both an EEG and an MRI.

The EEG was performed last Friday, and I just received a call that everything is normal. Great news! One test down, and one more to go! :)

Have any of you had these tests done for your children? I’d love to hear about your experiences, especially if the results helped you gain any insight into your children’s situation.

I really have no idea when this will air on TV, but you can see snippets of the shows on MTV.com, click here to check it out!

When people ask me what I think is causing the sudden increase of Autism in our country, and I tell them that if I had to take a guess, Autism is increasing because of some kind of environmental factors that we’re exposing ourselves to. The cases are just so random and unbiased, and the numbers continue rising so much, that it’s hard for me to think that it could be anything else.

I just read this short article from NBC San Diego, stating the following:

Researchers for the California Department of Public Health say two pesticides used on cotton and some other crops may be linked to autism.

Apparently the researchers studied a group of women who lived near fields that were sprayed with pesticides, and their results were pretty scary. Obviously it’s not conclusive by any means, but hopefully it will help motivate further research.

NBC San Diego: “Study Finds Possible Link Between Pesticides, Autism”

Colton has really been showing improvements in his speech though!  He’s starting to use more and more language, aside from his memorized phrases.  The other morning he woke up, walked up to Krystal and said,”Mommy is in the pink shirt.”  It’s amazing how a little spontaneous speech can brighten our day. :)   

Why do I bring this news here? Guess which fund is currently in the running? A Cure for Autism! So if you have an American Express card, please take the 2 minutes to register and check out the charities. It’s all for a good cause, and is definitely good mainstream exposure.

I’m happy to see that the awareness of the general population is continuing to grow!

Official Details:

Presenting The Members Project^SM. Join Cardmembers to vote for one incredible idea. On August 7, American Express® will fund it with anywhere from $1 million to $5 million. Which idea will it be? The decision is yours. Visit membersproject.com.

Well, if the comment came from someone that you trust, do not ignore it. If I could do it all over again, here’s exactly how I would proceed:

Lookup the Warning Signs

Don’t just take anyone’s word for it. Look up the common signs of Autism, and see if any of them make you feel uncomfortable. If you start thinking that several of the signs make you think of your child, then proceed to the next step. Please realize that “Autism” represents a wide spectrum of disorders (hence the term “Autism Spectrum”), so your child could show some of the signs, but not others.

• WebMD.com - Autism Symptoms
• WrongDiagnosis.com - 48 Symptoms of Autism
• AutismSpeaks.org - Learn the Signs

Just as an example, Colton’s pediatrician adamantly denied that he was Autistic, because he “hugs and kisses” his parents. He did hug and kiss his parents, but he also showed signs of many of the other symptoms: repetitive actions, social interaction with others, sensitivity to textures and noises, etc etc.

Visit your Child’s Pediatrician

Now that you’ve done a little research, take your child to his/her pediatrician and explain your concerns. Take a list of the symptoms with you, and explain the signs and symptoms that you are worried about. It’s either going to go one of two ways:

1. The pediatrician will agree that more evaluations need to be done.
2. The pediatrician will think you’re making a big deal out of nothing.

Either way, ask for a referral to a developmental pediatrician, and I wouldn’t take no for an answer. Seriously. There is no reason why you shouldn’t be able to have further evaluations done.

Visit a Developmental Pediatrician

Before you go to visit the Developmental Pediatrician, sit down and take as many notes on your child’s medical history as you can remember. Were there any complications during pregnancy? Has he ever been hospitalized? I’d just write down everything. The doctor is going to ask you for all of those details, and they aren’t easy to come up with when you’re on the spot.

Chances are, you will walk away from this appointment with a diagnoses. If your child is diagnosed with any form of Autism, I would request referrals for the following:

• Medical Tests (Blood and Urine Tests, Genetic Testing)
• Speech Therapy Evaluation
• Occupational Therapy Evaluation
• Physical Therapy Evaluation
• Nutrition/Diet Evaluation

If you walk away with contact information for the above, you are ahead of the game.

Evaluations / Medical Tests

Now is the hard part, waiting. Chances are that you won’t be able to get many of these appointments and evaluations scheduled for anytime soon. We had to wait 6+ months for some of the evaluations. But when your child finally is evaluated, and you’ve seen these specialists, chances are that you’re going to have a good idea of what kind of help your kid needs.

As I’ve said many times, I’m not an expert on any of this. I’m just a parent trying to help out, and hoping to guide those of you who are as lost as we were. We eventually got all of the tests and evaluations done, but we had to ASK for most of these things… no one told us. For some reason you’re going to find out that people don’t just hand you a plan, you have to do the research and work to try and figure out what kind of tests and evaluations you should have done. It doesn’t make much sense does it? In the end, it’s up to you to fight for your child.

Parents, if you’ve been through this, and have any insight or tidbits of knowledge to share, please do! Either contact me via email or comment here. Also, I have yet to find a great resource on the web that lays out this kind of information. If you know of one, please let me know.