Autism. Beginning the Journey.

This was taken right around the time of his diagnosis

My son was three years old when we got his diagnosis of Autism.

Not that I did not already know he was different from other toddlers I’d known, but it was shocking nonetheless. To date he had not spoken a word, ran away constantly (called elopement in the Autism world), seemingly never slept, had an inordinate amount of allergies, and almost never looked at me.

This is not to say we didn’t communicate or share love. Of course we did, but not how so many others could. It was not easy.

Photo from their first day of school

By this point, I also knew his sister was much like him, though still very much her own individual (she was not diagnosed until age 5). This is something all Autism Parents get eventually. While there are charts, and lists, and articles telling you what all the “tell tales signs” of autism are; each and every one of these children are their own individual. So there I was, a single mother of two, dropped into the deep end of the parenting pool, feeling like I was going to drown any second. I share this with you now because I want you to know you’re not alone. I want you to know it can and will get better; and I want to show you how.

She felt so safe & happy at this moment. Moments like this one were my saving grace.

Firstly, know this: this is not your fault. I carried that burden for years; don’t do it to yourself. Now that we have that out of the way, let’s talk about what you can do.

You can and should reach out to local government agencies. Here in California we have something called Regional Centers, and it’s a great staring point. I won’t lie to you, it’s a government agency, so you have to put in a lot of effort to get help, “hello red tape”. These places also have vast libraries of information, groups, hand outs, etc… a great place to start learning.

Starting now, you’re going to need to get used to people being in your home and working with your children. In fact, you need to get used to them working with you, too. The parent I am today is pretty amazing, but very different from the one I thought I’d be. This was one of my biggest lessons.Parent the way they need you to not as you want. Autistic children require three big things from us as parents: love, patience and consistency.

This is a photo of the calendar of school, doctor & therapy appointments for the kids

I am sure there are plenty of people who’d say all children need these things, and they’d be right. Autistic children (largely), though, do not have the inherent flexibility or social skills to adapt on the spot. For example, my son used to have fits of terror any time I made a u-turn. I’m talking legs flailing, arms punching, top of the lungs screaming like someone was trying to murder him; all while I’m trying to safely drive a vehicle filled with the people most precious to me.To this day I don’t know why. What I do know is that it was far better for all concerned to make three right turns instead.

We flex because they can not yet.

This photo is to remind us that there are so many bright and joyous moments, too.

Sleep is your friend. You know when your child was a newborn and everyone told you to sleep when they sleep, and it made no sense to you, because how would you get anything done? Yeah, I’m going to tell you the very same thing.

My son (I reference him so often because his particular characteristics were much more pronounced at this point in time) never had a “normal” sleep cycle. I felt like he never slept…ever. By age three, on top of his sleeplessness and boundless energy, he was a creative problem solver with an adventurous spirit (eg: on more than one occasion I awoke to find an open front door and a missing kid). This led me, desperately in need of sleep, which led to sleeping on the floor blocking of the front door for several months. Once we started Applied Behavior Analysis (ABA) therapy on a regular basis, their visits were my respite (aka mama’s nap time), and I am grateful to this day.

The day we had to get him tested for brain seizures.

Don’t be afraid to ask for help. I did not do this and wish I had. I don’t just mean ask someone to babysit so you can go get a pedi and unwind. I mean talk with the important people in your life and tell them you need support. If you, like me, don’t have family close by this can be very tough. You might want to look into joining a support group. Trust me on this, being able to share with someone who really, truly, gets what you are experiencing can be cathartic. Here are some wonderful links to start with.

 Finding a caregiver may be a challenge. I can not tell you how many day care centers we were ejected from. I think it was four, but I might be missing one or two. Often, Autistic children are speech delayed. Likewise, they are often also delayed when it comes to toileting. These are not things a childcare center loves to hear.

Autistic children are also prone to violence as a result of their frustrations and need for stimulation. I’m telling you this because these are the types of things you need to be very up front about. After being ejected from our final day care due to my son biting one of the employees and striking another child, I was devastated. He wasn’t a mean kid, he just needed a different kind of care. It was this that sent me (kids in tow, me in tears) back to our Regional Center begging for help; and they did. I was fortunate enough to be connected with Ability First  and it changed our lives. Remember, ask for help, it’s out there. Ask me. I’m right here, I get it, and I want to help you.

This was taken on a zoo trip while I was homeschooling my son. I had removed him from school because they were unable to see to his safety. He has now been back in school for three years.

If your child is school age already, you’re going to learn the term I.E.P. (individual education plan). You are also, most likely, going to learn how to be an advocate for your child.

When you have meetings with the school in this first year, I highly recommend asking your family’s case worker and/or therapist to come along. They have experienced this before and can help explain the particulars of your child and the work being done at home. In my experience, there is also power in numbers. Let me tell you this: don’t ever stop fighting for your child no matter how frustrated and defeated you might feel. They might suggest things you don’t feel appropriate, placement you disagree with, or even flat out disagree with you on how to handle daily behavioral issues. Frankly, you might feel bullied.  I left my first few of these meeting in tears, feeling my efforts futile.

You can and will have a positive impact if you stay informed and involved.
The last thing I have to share with you is this: just find what works for your family. You are going to be inundated with information, opinions, appointments, questions, feelings, routines, etc… Remember to breathe and laugh. That beautiful, loving, child is the same person today with their new “label” as the day they born; the day you fell in love with them. Create a structure that works for your whole family and forget what everyone else in doing. It’s good to read the articles, investigate that options, but don’t let that be all you are.

This journey you’re now on is a winding road with many ups and downs. It also has phenomenal views, if you just remember to look for them.

Our journey is nowhere near complete, but I know it is so much easier to navigate thanks to all the hard work we’ve all done these past years.







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