First Day of School – a Disaster
We have heard it several times from people that had been around the block: “Someday, you’re going to have to fight for your child.” Apparently, today is the day for us. On his first day of first grade at the new school, Colton is having a tough time. We just found out that the school made the decision to NOT assign him with a para (teacher assistant), and apparently they didn’t think that it was important to tell us.
It is a day of firsts. It is his first day at his new school, first day in first grade, and his first full 8-hour day of class. And unfortunately, this will be the first time, in any educational environment, where Colton will not have an aide to help him through the day. Our goal, as it was explained to us at the end of the last school year, was to wean him from having to use a para full time. Apparently, their budget forced them to wean him a little faster than expected. He is now sitting in a classroom with 24 other children and one teacher. Needless to say, we are pissed.
So what do we do? Well, here are the steps that we have taken so far:
- Requested (demanded) a meeting between the case manager and the principal - it has been scheduled for Thursday.
- Contact all private therapists - we contacted our son’s speech and occupational therapists from Kid-Talk, and asked them to write recommendation letters with their professional opinions on the matter.
- Contact specialized schools or groups - West Metro Learning Center, where Colton attends social development classes, offers advocacy assistance for their students. We asked them for recommendation letters, and also asked them about their “advocacy services,” in hopes that they can send someone to attend the meeting with us.
- Review Most Recent IEP - Carefully look through your most recent IEP (Individualized Education Program), and make sure that you understand exactly what assistance your child is supposed to be given (according to the IEP).
- Reach out to other Experienced Parents – Lastly, and maybe the most important step, was contacting the most vocal parents that we know. In every community, you have a group of parents that fight tooth and nail for their special needs children. Use them to your advantage! It’s not what you know.. but who you know. These parents have been through it all, and they can provide invaluable information when you need it most. Best of all, they won’t even charge you for the help :)
At this point, our goal is to overwhelm them with documentation and recommendation letters at the initial meeting. They will immediately see that we spend a LOT of our time and money to get Colton the best learning environment possible, and that we will not just bend to their budget restrictions. If they continue to deny the help that Colton needs, then we will certainly do anything needed to find the best and brightest advocacy lawyer available.
Parents, do not allow the administration to make decisions for your child that you are not comfortable with! This administration has no idea what my son’s needs are, especially considering that he is a new student to their school. So, we will fight the system for our Son. It’s just sad that instead of being able to enjoy the first day of school, our autistic son is suffering from an unstructured environment, and his parents are having to put all of their energy into fixing a broken system.
Autism – What to Do First
Someone has mentioned that your child might have Autism. What do you do now?
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:
- The pediatrician will agree that more evaluations need to be done.
- 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.
5 Tips for a Productive IEP Meeting
We had our IEP (Individualized Education Program) meeting last week, and it went amazingly well! For those of you who haven’t been through one of these meetings yet, it’s basically a regular meeting where you and your child’s teachers and therapists meet to discuss the progress that your child has made. After discussing how your child is doing now, the real purpose of the meeting is to come up with some goals for the future, and to then get them into his IEP.
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:
- 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.
- 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.
- 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.
- 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.
- 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
New Genetic Link Tied to Autism
One of our biggest worry as parents is “WHY” our children have fallen on the spectrum. What caused something to happen to our child? Was it genetics, vaccinations, or could it have been something environmental?
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.
Walk Now For Autism
I’m very happy to hear that Autism Speaks and Cure Autism Now have combined efforts this year, and together they are organizing the Walk Now For Autism event! If you haven’t been to one of these before, I highly recommend it. You will be amazed at how many resources are available in your area that you never knew about.
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.
When in Doubt, Get Evaluated
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.
Visit to the Neurologist
Krystal and I have been evaluating Colton’s progress, and going through everything that we’ve done thus far to help him. One of the evaluations that we hadn’t looked into was a visit to the Neurologist. It’s been a nagging issue for us, since Colton had what were diagnosed as “febrile seizures” when he was two. We have always questioned the diagnoses, because at the time of the first episode Colton did not have a fever of any kind (which is the definition of febrile). But, the doctors were insistent that this was a classic case of the very common seizures. So, we stopped there and focused on the future.
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.
MTV True Life: I Have Autism
MTV has featured 3 young people who have continued their struggle with Autism through their teenage years. As a father of a 4-year-old, I can’t help but feel sad when I think about the struggles that my son will have to go through later in his life. It’s very hard to watch, but I am happy that the awareness is continuing to grow, and hope that this type of coverage will help other children realize why our kids act the way they do.
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!
Possible Link Between Autism and Pesticides
EDIT: After doing some additional research on this subject, it seems that the correlation between the pesticides and autism is pretty weak. If you’d like to read a great post by a skeptic, AutismDiva, click here. She gets into the fine details of the study, and even has a link to the paper itself.
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”
Diagnosed with Autism, Now What?
As far as I can tell, every parent who has just heard the diagnoses of their child goes through the following stages: