The Denver Autism Wheel

Posts Tagged ‘new to autism

OK, your child was recently diagnosed with autism. Statistics say it happens once every seven seconds or so. But this time, it isn’t a statistic. This time, it’s your kid. You have been there for everything. You were there when he was born, dried his eyes, wiped his little bottom. And now, a team of doctors comes along and tells you your world just got much more complicated.

What the hell is autism? Who are you people to say my kid isn’t normal? Who are you to say he isn’t perfect? I’ve been here the whole time! How dare you call everything into question?

I hope that sounds familiar because, otherwise, I’m the only crazy one on this page.

Important observation: it’s OK to feel overwhelmed, sad, desperate, and confused initially. Autism is full of unknowns, even among the best and brightest in the medical community. But you’re probably not one of them. You’re a parent. So you start off knowing even less than those guys. Who reads books and research studies about autism unless they have to, right?

So it’s OK to feel overwhelmed. But you can’t stay like that.

No matter what, this is a child—your child—that we’re talking about, and you have to do everything in your power to help your child grow up and be responsible, compassionate and capable. Autism isn’t contagious or fatal (although it can occur together with things like epilepsy which can be). It is definitely not an excuse for laziness, bad or undisciplined behavior. If anything, autism means you and your child will have to work harder and more diligently than most kids who come by typical behaviors organically.

So it’s going to be a lot of hard work, no lie. But the good news is there are a lot of quality people and places that are equipped to help. And we can help you find them.

It’s OK to have a good cry after the diagnosis. So go ahead. Then, dry your eyes, eat a nice meal, and let’s get to work.

As you may have noticed, navigating the DD/LD (developmental disability/learning disability) jungle in Colorado can be a total nightmare if you’re flying it solo or if you’re new to it. Our research is grounded in our school aged children with high-functioning autism; however, many of the resources listed here are invaluable no matter where you or your loved one is on the Spectrum or how old they are. We have our eyes to our own future of middle- and high school and beyond, but we also started when our kids were preschoolers. Having said that, here are some good starting places that will help you get your feet under you.

BEST PLACES:
www.autismcolorado.org (Autism Society of Colorado: first Wednesday of each month is Beau Jo’s Pizza night. If you’re in Denver Metro, come meet families, advocates and individuals in our community)
www.autismspeaks.org (Autism Speaks: get their first 100 days kit)

EDUCATION WEBSITES:
www.greatschools.net
This site is helpful but geared for regular ed; it’s very, VERY difficult to find specific info on SpEd within school districts, but this site contains standardized test results, parent reviews, neighborhood information and district standings. We look for trends in the reviews–parents who went out of their way, either to recommend or warn against a particular principal or school, students who didn’t like homework but appreciated the dedication their teachers demonstrated…

–District websites
They do provide some information about how they organize and support their SpEd. The more information they provide on their website, the better. It means they take SpEd seriously (I will take a moment here to call out Littleton Public Schools as an example of a public school district that gets it; their website gives an indication of the investment they make in SpEd). Also look on the websites for phone lists. If you can speak to an actual principal without a whole lot of kerfuffle, that’s a pretty good indicator the principal takes his or her responsibilities seriously, not just as an administrator, but also as an ambassador of the school. You can usually find district websites at the Great Schools site, if you can’t find them elsewhere.

www.arcdouglasarapahoe.org
Whichever county you live in, find the ARC that represents that county. They provide a wealth of information, support, advocacy and sanity checks at no cost. You can get an education advocate who will attend IEP meetings and parent/teacher conferences, advocate for your child and you, and prevent the district from ramming bad ideas into standard practice. The people who work at ARC tend to have skin in the game themselves, so they’ve navigated these waters as parents and understand what you’re going through and how to avoid the bureaucratic torpedoes.

Some other resources:

WEBSITES
http://www.jfkpartners.org/ (University of Denver organization specializing in therapies, diagnosis, training for LD/DD)
http://www.wrightslaw.com/ (SpEd legal advocates, in case your IEP is totally hosed…very good at making sure public schools accountable to the Free and Appropriate Public Education rules they are obliged to follow)

READING LIST FOR K-12 EDUCATION WITH SPED
From Emotions to Advocacy (good book on how to become an effective advocate for your SpEd student)
Writing Measurable IEP Goals and Objectives (good for understanding what makes a good IEP goal, how it’s going to be measured, how to follow it through the school year)


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