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Unexpected diagnosis: Learning how to navigate life with a child on the spectrum.

Unexpected diagnosis: Learning how to navigate life with a child on the spectrum.

When you have a second child, it is easy to pass off differences in behavior and milestones to your children being completely different.

As you should, because as parents know,  children are totally different.

We started noticing some differences that were beyond standard nuances from child to child, right around the time our youngest was in preschool.

His teacher, who I had grown to know and trust fairly well suggested that we have him tested for ADD.

Which I balked at, after all, don’t all 5-year-old boys have ADD?! Leaning on her knowledge and experience with kids for so many years, I made an appointment for him to be tested.

Plus if I am being completely transparent here, we had already met the deductible so what the heck? Let’s give it a whirl.

Mother’s Intuition

I knew in my gut that ADD wasn’t going to be the diagnosis that we left with. I knew something was wrong, but couldn’t pinpoint the source if that makes sense.

There would be times in moments that felt out of control that I thought, this kid is dealing with some very serious things.

For example, we were at our local playground and a parent that I know fairly well was also there with his kids.

My little dude was upset about something and he literally threw himself down, full on 2-year-old temper tantrum style. My friend nonchalantly commented that he hadn’t seen a kid do that for a while because his were so much older than mine and seemingly out of that stage.

It was then when I really knew that something was very different with this spunky little guy.

Older folks, think my dad and father in law,(heck even my husband and I at times) would grow easily perturbed that behavior wasn’t seeming to change, even with discipline. And we tried it all. Timeouts, toys being taken away, spanking, no electronics. Nothing seemed to get through to the little boy. I am sad to report there was lots of yelling that came from our extreme frustration.

What we learned

The evaluation for my little guy was looming and yet I still had questions about the tests and if they were the right thing for us to be doing.

So when the day came for the results appointment,  I breezed into the doctor’s room and sat down, ready to hear “You were totally overreacting. There is nothing wrong. Enjoy your life”

Instead what I heard knocked the wind out of me.

He didn’t have ADD.

He has non-verbal learning disability, which is considered to be on the ‘spectrum.’

The first thing that doctor told me was that the name wasn’t quite what it sounded like and to basically ignore the “learning disability” part of the name.

He told me that in simple terms, he isn’t able to process the “mom look” and he needs to have things spelled out to him.

As in, we need to tell him as we are getting angry, while staying calm. Easier said than done, right?

So, instead of giving him the stink eye, we need to say “B, I am getting angry because you are doing ____, if you don’t stop you are going to have to sit in timeout”

Additionally, we found out that our typical Saturday schedule didn’t work well for him. Often, on Saturdays, we would pick one of our favorite breakfast spots have our morning meal and run errands for hours with no particular plan. We are learning that he needs the structure of knowing that we will first eat breakfast, then go to Target, Costco, and then Lowe’s and return home after the last stop.

For our little guy, structure, is key.

Which makes traveling as much as we do and as varied as it can often become a struggle. He needs to know what to expect, which is not something that I am always able to provide. At home or on the road.

I share all of this because I know it has helped me to learn that I am not the only momma dealing with kid issues. And Secondly, I share because you may notice a difference in some of the ways I describe various locations. We are learning that overly crowded places with high volume levels are often too much for him, so we are adapting to this as well.

Everything I share, I do with the intent of helping others. I would love to know, have you had to deal with unexpected news about your kiddo that has turned your life upside down?