I won’t give up

I really need a better system. I stood in the kitchen staring at the refrigerator with all the tattered sheets of paper held up by magnets.  They have hand-written on them “I want juice”, “turn off light please” and “I want videos”.  We keep adding to the collection whenever he makes a new request.   Juice is the main one we use so that is the one that isn’t jumbled up with the others under a heavy duty magnet.  I realize there is a tidier way to do this, but, as any friend of mine could tell you, organization has never been my strong suit.

Hayden will come up and say “juice”.  And rather than say “Say it better!”, we will direct him to the haggard paper where he will proceed to read the entire sentence out loud.

“I want juice, please.”

“Okay!!!” we follow it up with praise and a cup of juice which will be gone in no time.

I’m not sure if this method  will really spur his language into high gear, but it seems to really help and I try to remind myself often how amazing it is that he is able to read these signs out loud!

But still, lately it’s been tough.  At the end of the summer, his language was really taking off.  He seemed so much more engaged and happy.  And I was feeling so happy and hopeful.  I was able to finally get him some mainstreaming in school, which would give him that socialization that I’ve so desperately craved.  Now, he’s barely able to be in his mainstream class at all.  He seems to be on a downward spiral.

Why is this happening?  What should I do now?

Today I cried on the phone to my friend Renee, who reminded me again how our kids cycle.  Of course, I thought.  I’m sure that’s what it is.   I’ve been through so many of these cycles when the kids regress after making such great progress.  My mind knows it’s a bump in the road, but my heart can’t help but feel devastated.

Sometimes when people ask me how the kids are, I don’t know what to say.  How can I explain the ups and downs?   It’s three steps forward and two steps back, but always moving steadily forward.  It’s filled with very difficult times and very hard decisions.  I sometimes feel like someone else would have been a better mother to two kids with autism.  Someone more organized, more brave, with more money and a more stable situation.

We will always be switching things up, trying new things.  I know that when the kids learn one new skill, another will be waiting.  I know that this might not ever end.  I know that there’s a possibility that I may always be at Emma and Hayden’s side, supporting them.

Even though I may not have all the answers,  I do know one thing to be absolutely true.  I will never give up on my children.  I will always be there for as long as they need me.  I can’t imagine spending my life any other way than being there every step of the way, through the good times and the bad.  They have taught Jared and I so much and have brought out the very best in us.   They have given our lives such a deep richness.  They have taught us patience, hope, love and a deep appreciation for all the small things in life.   I know that we’ll hit many bumps along the way, but every moment with my children is a gift from God.  I store up our days like a treasure in my heart.

I couldn’t help but think of Emma and Hayden when I watched this new video by Jason Mraz.

I won’t give up on us, even if the skies get rough, I’m giving you all my love, I’m still looking up!