What the Label Gave Us....

(first things first, unfortunately, no update on the Cystic Fibrosis front... so my therapy today is just from a place of reflection on how far we've come on the Autism front---starts out like a downer---but I promise it has a happy ending)
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"Is something wrong with Kenton?" The bomb dropped by my very intuitive 6 year old. The question that made my heart stop. The question I was definitely not prepared for.

My honest answer to her many months ago, has now led to some of the sweetest moments between the two of them. It's got her rooting for him, just like a parent would--and it's led to awesome celebrations like yesterday at lunch when she said... "Wow, he is REALLY talking good today, isn't he?" It also has invoked the sweetest prayers. Like the other night, before dinner...

"...and dear God, please take away my brother's "as-tism". It is her coined phrase when she doesn't know if she is trying to say Autism or Asthma.... and for us, it falls in the too cute to correct category. And God knows EXACTLY what she is saying.

Some of you may be gasping that we would have let our daughter "in" on these struggles. I assure you it was no easy decision...and in that moment when she asked, I honestly wasn't prepared for the right answer...if there was such a thing. The reality is, she sees it. She knows him well. She knows ME well (lived inside me for 9 months, ha), and it is a part of her life too.

Her question came this past summer, when she entered my bathroom and basically busted me in a mommy-meltdown. We had just gotten home from a beautiful day spent at the park, and I had done all the "right" things. He got the 10 minute warning before the fun was to end... then the 5 minute warning....then the what's the LAST thing you want to do warning--and we discussed what we were moving on to next.... but none of that mattered. When it was time to head home, the most massive of all meltdowns occurred. There were plenty of families at the park that had a front row view, and though I refused to make eye contact with any of them, I'm quite certain they were appalled, and had a good bit of "If that were MY child..." going through their heads. It was the longest walk of my life. Probably 50 yards to the car.... my two daughter's walking obediently, and my son on my hip, repeatedly punching me in the head, kicking, and screaming.  It was a moment I will NEVER forget as long as I live.

(sidebar--- I know all kids throw fits. I have two other children that have had their fair share... this is different. WAY different.)

I kept it together until I got to the car. Then with my shades on and a cartoon to distract the kids (gotta love mini-vans), I let myself break down. The diagnosis was so new at that time---it's almost like the physical attack allowed me to release it. I wallowed. I let myself feel like a victim---after all, I was just physically assaulted. As we pulled in the drive way, I re-gathered my composure-ish long enough to unload the kids, and headed straight to my bathroom to try to pull it together and hide the remnants of the ugly cry that had been going on.

That's when my daughter came in. "Are you okay, Mommy? Is something wrong with Kenton?" I was a singer, not an actress... nothing I could have said at that point would have convinced her I was ok....so I took the honest approach. We got to have the sweetest conversation, that I will also remember for the rest of my life. I did tell her he was Autistic and I'm still not sure whether that was right or wrong to use "the word", but I'm giving myself a pass if it was wrong. Of course her steel trap mind hasn't forgotten it although we don't continue to use this word with the kids. I explained to her that some things will be harder for him. I tried to explain that his fits are different than hers. He isn't just trying to get his way---he is trying to find his way. He can't always explain his emotions like she can, and that we need to pray for him, and learn ways that we can help him. That was the gist anyway.

It was that day, later on (when my face stopped throbbing) that I was oh-so thankful that we had proceeded with the official testing, even though some would (or did) say "don't label your child"--and that was something that we struggled with for a bit. It wasn't about getting a label. Nothing that we learned from the doctor that diagnosed him, changed who he was one bit. He was perfect before, he is perfect now. We still maintained the expectations of him that we did prior to our knowledge. What did change is we became better parents to him! I thought about what my reaction may have been that day, if I'd never followed my instincts, and gotten to the bottom of the concerns I was having. I was so grateful for the knowledge.... because as hard as that day was knowing what was at play....not knowing would have made it far worse.

The label didn't take anything away from us (maybe knocked the wind out of us) but it did GIVE us the awareness of what we were dealing with....which has led us to find amazing resources, people, and strategies. Simply put, it helped us become the parents KD needed us to be.

I still wonder today if we would still be waiting for him to "out grow" things, that weren't going to go away with just age. Instead, we faced the music....and are now getting so much help. His progress in just the short 7 months that we have known, is amazing, really!

Don't believe me? Here's some proof! ;)

After the park incident, and many more unfortunate moments similar, Jason and I met with his doctor again. She trained me how to carry him properly, so that he wouldn't be able to go for the head (that's almost funny, right?) during these attacks. More importantly, she gave us techniques on dealing with the meltdowns...which, ironically, were techniques to basically NOT deal with them. She suggested we try completely ignoring the meltdown. After he was done being aggressive, hateful, etc... my inclination was to try to talk it over.... "We don't hurt, Mommy" type of discussions. She said no. Don't give it any attention. Just a "Glad to have you back!" and go on about your day. We left there thinking she was a little crazy....but you know what? She wasn't.... it worked like a charm!!  It has been literally MONTHS since he has been physically aggressive with me, or anyone for that matter.  Those painful battles are distant memories for us at this time. In fact, he is such a little love bug so much of the time... it's hard for me to even think of him being that way towards me.

That alone was worth the "diagnosis". But there's more.....

We got him set up with the most AMAZING Pediatric Occupational Therapist... and he is making HUGE strides there. She loves him so much, and the feeling is more than mutual. He talks about her all the time and is now asking to ride his bike (refused to ride it prior to).... and he is taking on a much stronger like for physical things. His hands are getting stronger. He's learning to grip a pencil...to WRITE HIS NAME. He has improved balance and coordination. Yesterday, at lunch... he asked Jason to teach him how to play football, and I think everyone at Olive Garden heard the giddy school boy yelping---- Jason, not Kenton....to be clear.

He is doing so well in Speech, that his therapist cut his time in HALF in December! This does make me nervous, because I see so much room for continued growth, but I'll still throw a tally in the progress column for it!

The "routines" we have put in place, have kept things so much more peaceful at home... but it's not about peace for Jason and I. The routines are what HE needs to feel safe. They are what HE needs to function. He needs to know what to expect. Something so simple to remedy has made his life easier... and why... because we now know how to help him.

I wish we would have known sooner.... but I'm so glad we know now. 

I did figure out how to add the "Follow My Blog" stuff on the right hand side if you are interested in following my crazy crew..... or if you know anyone struggling in these areas... please direct them to me! I am eager to "meet" other parents dealing with similar things... share ideas, frustrations, celebrations, etc. I'm sure there are great support communities... I just haven't found them.