Autism Spectrum Disorder – Round 2

17 10 2018

Today was a day I dreaded and looked forward to with equal measure.

A day that brought relief but sorrow.

Today, my 6yo (he’ll be 7 next month) was diagnosed with Autism. He’s a level 1, which means he’s high functioning. If they still used the Asperger’s label, this is probably where he would fall.

Because he’s high functioning, it’s difficult for people to see. Without gathering all of the information, it’s very difficult. So difficult in fact, that in the last 18 months that I’ve really been pushing, we’ve had two places that deal with autism do a cursory glance and tell us they didn’t see anything. He’s verbal, doesn’t flap his hands, and he makes eye contact, which completely excluded him in their minds.

But autism is a spectrum. It’s so much more than those three things. Yes, he’s verbal, but he has difficulty expressing his needs. His conversations are one sided – there’s no reciprocity, no back and forth. So while he can tell you (in detail) about his day, he struggles to carry on a back and forth conversation about it. He has words, but lacks age appropriate communication skills. I wish they’d change “verbal” to “communication”, because communication is so much more than words. It’s body language – gestures, how we hold our bodies, facial expressions, eye contact – all things he still struggles to do and understand even though we work on it weekly. He does have repetitive hand gestures, they’re just very subtle, and he doesn’t flap. He’s usually touching things or manipulating it to form a spiral or circle pattern of some sort.

I dreaded today, because the thought of baring myself and my family, of making us vulnerable to criticism  is hard, especially after being turned away while asking for help over and over again. Along with the places that said they didn’t see anything, we went to multiple specialty clinics to rule out other things. They couldn’t help me because he checked out fine in those clinics. Their only advice was to keep doing what we were doing. That didn’t help because those things didn’t work.

But this doctor we’ve been working with, she listened. She took in the history – eye contact is “good enough to get by” so might not be noticeable to most people, but she heard us when we said it’s a skill we’ve been working on for YEARS. You guys, we’ve worked on SO MANY THINGS FOR YEARS because I KNEW there was something going on and I refused to NOT help my son just because no one would help me.

On this journey, we’ve been judged by outsiders and at times, well meaning insiders. Early on, I was the ONLY one who worried that my son wasn’t processing his world the way we expected him to. Slowly, some of the others came around. It was a hard place to be, but as the people close to me started seeing what I saw, it lightened the load.

We’ve been on a long hard road and today, we got off that road, thanks to this doctor who took in the whole picture.

It’s still going to be a long hard road, but this road has AAA insurance. I’m now in the process of assembling a team to help my child. And thanks to my 2yo’s autism diagnosis earlier this year, I have so many more connections and people mostly ready to go, which is a huge relief. They’re my AAA team 😉

I’m trying not to be angry at the wasted time. When four years ago I was saying, “hmmm, my child sees things, reacts to things differently,” if someone could have helped me then, when I started asking, then early intervention would have been amazing. But I can’t go back. I can’t change that, so I’m trying to leave it alone and focus on the positive. Today I got answers which will enable me to get help for my son so he soar within his boundaries and that’s what’s important.

So here’s what I’ve learned. Here’s what I can pass on from this journey so far.

  1. Moms, dads, if you think something is going on, FOLLOW YOUR GUT. Keep pushing for answers. Document things so when you get a chance to be in front of someone who can help, you can just hand them a piece of paper (or a note book) and say, “these are the things that worry me.” I found that trying to remember on the fly was hard. If we were in a calm time, those things didn’t come to memory so easily. If we were in the middle of a rough patch, I was venting more than sharing helpful information.

Because these behavioral clinics have months long waiting lists, I had my son on    multiple lists. If I got the help I needed, I could cancel the others. But I was wasting time waiting if the first ones didn’t provide the help needed. Which was exactly what happened in our case. Today, I’m glad to say, I was able to cancel a future appointment and open up the slot for another family who needs it.

2. Not every Viking belongs in your boat. Some Vikings may be great, but they just don’t work in your boat. And that’s okay. Find the ones that do. It’s worth it. This last doctor was my missing Viking. The place that turned us away after 10 minutes of interaction with him because they “didn’t see it” may be fantastic for another family, they just weren’t a good fit for us.

3. You need a couple of really good friends that will stop you from driving to Iowa when you realize that Viking doesn’t belong in your boat and you’re feeling hopeless and begin doubting yourself. What I learned from others, is that it’s often difficult to get a diagnosis for our high functioning kiddos. That going through multiple doctors is pretty common. Which brings me to my next point…

4. DON’T GIVE UP. You are the best advocate your child can have. You are the one who knows him (or her) best. You know their daily struggles. To be frank – this is your job. Take a breath, take a break, take time to beat on bongo drums, but don’t stop. Without you, your child can’t get the help they need. You KNOW there’s something going on, you just have to get your child in front of the right person, and that might take a couple of tries and those tries, might take a couple of years, so grab an energy drink and keep pushing forward.

 


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