If you're like most parents of autistic children, you've spent a lot of sleepless nights worrying about your child's future. I know I have.
There's the obvious worry: what will happen to them when you're gone?
And then there are the myriad other worries. Will my nonverbal child ever communicate? Will they ever learn how to drive? Will they ever have a job? What happens when they age out of the educational system?
These are all legit concerns. However, you are probably worrying far more than you should. Here are three reasons why.
Like every other community in the world, autism is filled with buzzwords that nearly everyone uses.
And like every other human in the world, some of these buzzwords annoy the shit out of me.
At the top of the list is the word choice, as it is used by Tosh's teachers and therapists. As in, "today Tosh made some poor choices and acted aggressively toward staff."
Now, I'm all about life being a series of choices. In fact, I am absolutely not down with the victim attitude that has taken over America. Everyone is a victim these days. It doesn't take long watching the news or scanning your Facebook feed to wonder if life has become one big contest to see who is the most oppressed.
In the long game of life, happiness and success are indeed a choice.
But if you're a kid with autism, and have a medical disability that prevents you from stopping and deciding how to react when you become agitated or overstimulated, your response is beyond your control.
This month, Tosh will begin homeschooling. Like every parent who makes this decision, I'm both excited and nervous. However, the scales tip more toward exited because I think he will really blossom. We have good supports in place and an exciting opportunity to create our own curriculum that integrates his AAC device. And, we can improve the consistency between all of his therapy and educational providers.
It will require some work up front, but in the long run it will be worth it.
Why homeschool? I know many parents of children with autism who have made this decision for a variety of reasons that include elopement, aggression, bullying, family beliefs/lifestyle and a better learning environment.
The thought of homeschooling can be overwhelming, which prevents many parents from thinking it's a viable option. However, it might be easier than you think.
I receive a lot of comments about what a happy boy Tosh is. And it's true, most of the time he truly is a little ray of sunshine.
My little Aries comes by his good nature naturally, but we've also done a lot of work to build his self image.
Because of Tosh's autism, he spends a lot of time in corrective therapy sessions. Private and school behavioral therapy, private and school speech therapy and OT in school adds up to several hours a day in which he's being corrected.
Just imagine if you were told every day, almost all day long, that everything about you is wrong. And then you go home and hear it from your mom and dad.
I've been working on a course to help parents teach their autistic kids how to go out in public successfully, and researched one of the main reasons families stay home: eloping.
If you don't know what eloping is as it pertains to autism, consider yourself very lucky. Like the traditional definition of eloping, in which people run away to get married, eloping in autism means a child or adult runs away from school, home or elsewhere without a caregiver. It happens every damn day and it's rarely the fault of teachers, aides, parents or caregivers being careless or inattentive. Oftentimes, the child is very clever and sneaky about it, and disappear in a matter of seconds.
Autism occurs more frequently than it used to, but even back in the 80s ... whether it was the 1780s or the 1980s ... there were plenty of undiagnosed cases.
When you have a child with autism or work with those who have special needs, you become intimately educated about autism's symptoms. And if you have a relentlessly curious mind like I do, you can't help but wonder about some historical figures when you hear about their unique behaviors.
In particular, three famous people stand out in my mind as likely undiagnosed autistics: POTUS 3 and Mt. Rushmore face Thomas Jefferson, artist Andy Warhol and rock icon Kurt Cobain.
If your kid is like Tosh, he eats the same 10 things over and over again. And chances are, one of those things is chicken nuggets.
The problem is, very few processed chicken nuggets are safe for any kid to eat, much less kids with autism. And they're gross. Not surprisingly, McDonalds chicken McNuggets are among the worst. They contain MSG, which will keep your child up at night, and TBHQ (tertiary butylhydroquinone) which is a petroleum-based food preservative that is a cause of ADHD and neurological damage. Plus, the dipping sauces also contain MSG and food dyes, which also cause neurological damage.
I don't know about you, but Tosh doesn't need any more neurological damage. We've had our quota for a lifetime, thank you.
Christmas can be a tough time for autism families, because there are so many popular holiday traditions kids with autism just can't handle. One of the most common is a photo with Santa.
Great news! More than 400 shopping centers across the country are hosting sensory-friendly Santa events on Saturday, Dec. 2 and Saturday, Dec. 9. Most events happen right before the mall opens, so that autistic children won't be overstimulated by crowds and the shopping centers can create a sensory-friendly atmosphere with lower lights and soft or no holiday music.
Specially trained Santas, who will take cues from parents and/or caregivers, will allow each visitor to take his or her time to approach Santa, and take photos standing next to or behind the child if they wish, instead of requiring a seat on Santa's lap. Santas can also kneel down next to wheelchairs for photos.
The event requires a reservation, so that children won't have to wait in long lines. Instead, families can arrive shortly before their preset appointment and approach Santa as they are called. Quiet activities will be provided to keep kids busy.
The events, which are available in all 50 states and in five Canadian provinces, are sponsored by Autism Speaks and Cherry Hill Programs, which is a company that provides Santa and Easter Bunny photos in shopping centers and other venues. Meeting Santa is free, but photo packages will be offered for sale.
To find a location near you and reserve your spot, visit this Autism Speaks webpage.
You might also like: 5 Christmas gift ideas for kids with autism.
This weekend, we needed a break from the heavy, cheesy, pumpkin-y flavors of Thanksgiving. Strawberry jam thumbprint cookies hit the spot!
These cookies are grain-free and dairy-free, but do contain some refined sugars in the jam. However, they're not super sweet and strike a nice balance between healthy and decadent. If you'd like to make them free from refined sugars, you can make your own jam. I just used some strawberry jam I already had in the fridge because I wanted them to be quick and easy, which they are.
Parents of developmentally disabled children suffer from a very difficult form of depression called chronic grief. The loss we have suffered cannot be relieved by the normal grieving process.
Why? Because it is ongoing; there is no closure. We may feel good most days, but we suffer constant triggers - IEP meetings that detail our child's limitations, seizure activity, judgment in public, isolation from family and friends, social media posts featuring children achieving milestones - and with each trigger, our loss is experienced over and over again as if it's new.
According to psychiatrists who specialize in chronic grief, the root cause is the gap between our reality and the expectations we had for our children and our experience as parents. We imagined something very different from what we've received. Our reality seems cruel and unfair for our children and for us.
This loss is even harder to accept because of the stigmas surrounding our ability to allow ourselves to feel the loss we've suffered as parents. We're told we must be grateful for what we have, so to grieve our loss feels selfish.
Heather Anderson is a blissfully happy autism mom and lover of life in Southern California who is on a mission to help autism parents rediscover their happy place.
Please join me on this beautiful autism journey. The Autism Oasis is a fun, supportive and educational community where your personal development is just as important as your children's. You are more than just a caregiver!