“I’m not sure,” I answered.  “I have to talk to the lady who left the message.  I left her a message last night asking her to call me right away.  It could be as easy as unchecking the wrong box and checking the right one.  She’ll have to do that for me, and I’ll have to trust that she does it correctly.” 

“Well, she better call you back,” Ronan’s younger sister said sternly. 

“I pray that she does,” I replied.

After enjoying our fun day in the sun, the kids and I pig-piled back in the car for the drive home.  Riding that Surfers Healing high, we reflected on how amazing the experience was for all of us.  When they are there on the beach, my kids get so excited.  They know that it takes a lot of people a lot of time to make the magic happen.  The siblings love that Ronan, and tons of other kids like Ronan, are on the receiving end of so much love and attention. 

We talked about everything we saw and about everybody we got to talk to.  After sharing some stories about the volunteers who blessed us with their presence I said, “I bet a lot of them don’t even have kids with autism.  I bet they see how wonderful the organization is and decide to give up their time for us.  They work all day in the hot, hot sun to make sure our families are surrounded by nothing but love.” 

The kids all agreed. 

Later on Willem said, “I wonder what it’s like for families who don’t have a child with autism.  I bet their houses are quieter, less hectic, and not so busy.”  I agreed with him, “Our house can be SO loud, SO hectic and our schedule SO very busy.”  And then I laughed, “But some the crazy is you guys, too, you know, and not just because of Ronan.” 

“Yeah, right, Mom,” Willem said with a twinkle in his eye.   

I little while later, Willem said, “I wonder if Ronan knows he can’t do as much stuff as we do…that he’s a little bit different.  I wonder what he knows what autism is since he hears that word so much around him.”  One of the other sibs offered, “He hears everything but he doesn’t show it.  It’s like he’s stuck and can’t get things to work in his body."

You’ve got that right, I thought. 

We’ve had so many tests done over the years:  hearing tests, speech evaluations, MRIs, bloodwork.  Even though many of the results come back “normal” or “within normal limits” he and the medical problems that plague him are far from what others would call normal. 

“You guys are so in tune with your brother, and I love it,” I started.  “You help with the simple things and the really complicated things.  Take his speech for example.  You want him so badly to talk again.  We know that his mouth works, his tongue works, and his voice box works.  He could speak at one point in his life, but now…nothing.  All the parts are there.  He just cannot talk like you are able to.  His body looks just like your bodies, but his doesn’t work as well as yours do.” 

Ronan’s little sister began, “Yeah, that part of him not being able to talk is hard.  Sometimes, it’s like he’s locked in prison or something…,” and then her voice trailed off.

Locked in a prison. 

“I sometimes think that, too,” I told her. 

Despite that, Ronan continues to thrive and make progress.  He’s started to play appropriately with toys again.  He’s been able to do some small household chores with the kids.  He’s typing a bit more, too.  All of that keeps us hopeful.  But the disability, and many of the struggles he faces daily because of it, still exists which is why maintaining his services is imperative.  We try to do as much as we can for Ronan on our own, but we know that sometimes we need help to get done what needs to be done.

Help comes in many forms and is delivered in a number of ways – through the generosity of family and friends, through therapy, through some financial assistance, and by being able to access the services that Ms. So-and-So seems ready to cut off.  I’ve called her back several times, but she has not found time to return my call.  I’d love to tell her that Ronan’s been able to break free from the silence and from being trapped in his body, but that miracle has yet to occur.  He still needs help.  We still need help, too.  I’ll keep calling and leaving messages because until full healing happens, my job is to keep fighting for my child.  That includes making sure that services are not terminated.  It also includes making sure that we, his family, keep Ronan healthy, safe, and happy right here in our sometimes loud, sometimes hectic, sometimes busy, but always loving home. 

Cathy Jameson is a Contributing Editor for Age of Autism.