Tag Archives: communicating with an autistic child

#55

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Watching their hair blow in the wind and their small bodies bounce with the waves, I stare at them instead of the beautiful desert mountains surrounding the lake.  I am caught up in emotion watching Ryan sit close to his best friend, William at the front of the boat.  There has never been a different answer to the question, “who is your best friend?”  Since he could answer it, it was William.  They met in pre-school and quickly showed interest in each other.  I have learned the life lesson that you can count real friends on one hand, but for someone who has trouble with social skills, even one friend is an oasis in the desert.  So, I clung like a life preserver to William and his mom, and did all I could to foster Ryan’s first and only friend.

William doesn’t suffer from autism; he has a chromosomal issue that is very rare and has caused him some developmental delays.  I honestly don’t see the delays, and I think he is the cutest thing I have ever seen, next to my own.  William is gregarious and silly and outrageously funny.  When I met his mom, Jess,  I decided instantly we were going to be friends.

Jess, and Rich have invited us to their lake house for a few days.  We have spent many evenings at their house, poolside, celebrating the boys respective birthdays or just family barbeques.  It’s tough to meet another couple and like both of them, plus meet a family who can handle Ryan’s issues—even welcome him.  And even though they don’t have the same set of issues, being under the umbrella of a family with a special needs child is comforting.   So we happily accepted the invite.

“Can I jump in, Dad?” William asks Rich as he slows down the boat.

“Sure!” Rich says with enthusiasm.  Jenna and William’s older brother, Tyler, quickly jump up to the side of the boat and leap in the gleaming water.

“Come on Ryan.” Williams turns to Ryan, who is standing back looking cautiously at the water.

“It’s okay. Watch me.” William says and leaps off the side.  Ryan watches as William comes up and laughs happily.

“Go on bud, jump in.” I say to him.  He hesitates for another second and then climbs up to the seat and bounds off.   His head doesn’t go under as he lands in the water, keeping his hair dry.

“Hey! How did you do that?” Tyler asks in amazement.  Ryan doesn’t answer him, he is swimming after William with a huge smile on his face.

“Mom, did you see that?” Tyler yells from the water.

“Yes! Wasn’t that cool? Ryan, that was awesome!” Jess says smiling.  She turns to me, “how did he do that?”

“He always does that.  I don’t know how…” I turn to watch them playing. I feel a swell of pride at something that Ryan can do that the others can’t.  “His swim coach said that is a life-saving technique she learned, to keep your eye on your victim.  It’s supposed to be really hard to do.”  I am smiling so hard, the back of my head starts to hurt.

“I think he is kicking his feet before he hits the water.” I trail off my thought as I realize I should stop gushing about Ryan’s silly “ trick”,  but the look in Jess’ eyes reminds me she knows how to appreciate all the things our kids can do.

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#47

I know they won’t approve it, and in my mind our journey with the school district has ended.  I feel bittersweet.  I don’t want to separate my kids now that I have had them at the same place; I don’t want two school schedules, two drop off times, two pickup times, two different holiday breaks.

But I also can’t bear to have Ryan go through another school year with doubts about the aide and their training  even though we write in the IEP the aide must have training, we know it us just semantics “training” can be a one-day seminar to them.

I am relieved to be free of the monthly meetings that accomplish nothing.  We openly discuss his issues, shortcomings and offer behavior plans that are never looked at.  When we go back to the next meeting nothing has been done to “fix” his issues.  Whatever progress he’s made has happened at home with us and Dr. Hunter’s therapists.

I am glad to be free of the fear they could change his aide at any moment.  The language is clear in the IEP they have the right to change.  And they have.  It was like a revolving door for a period of two weeks.  The aide assigned to us had some personal family issues.  And instead of putting herself out for two weeks, she called in everyday, leaving the district little room to provide the same aide.  It wasn’t their fault and I did sort of feel badly for them scrambling each day.  But I did not appreciate the repercussions it had on Ryan.  It was the beginning of his downward spiral.  A beginning to what made us consider ending his career at public school.

The clincher for me was after the Thanksgiving break.  I put their backpacks in the closet as usual for the weekend.  And as it was a long weekend it was in there awhile.  I hadn’t realized how visually significant that was to Ryan.  When I got the backpacks out on Sunday he started to cry.  And in his “broken” verbiage he pleaded to me.

“No school…no school. Backpack in closet. Backpack in closet.” He wailed.

In his short life, he had never tried to persuade me so vehemently with words.  There were many times he used his fists or legs to show disproval, but this was really communicating with me.  I felt my heart rip in two at the dichotomy of this: my baby was conveying his feelings so well! My baby is begging me to not take him to school…

“Well, that’s it. What do you think?” Dan says bringing me out of my thoughts. He leans back in the chair and stretches his arms over his head.

I sit silent still rummaging through my thoughts.  I don’t have the energy to sum up all I’ve been thinking so I just shrug and think for a few seconds.

“I guess it’s what I expected.  Just glad it’s out there.  It feels like we’ve been lying to them or something.” I confess to him.

“Yup, we put them on notice and now we just go forward with what we planned.” Dan nods as if confirming his own words.  Then he stands up. Well, I gotta get going.  I’ll see you later.” He leans down and kisses me and walks out.

Yes, what we planned.  We. What WE want…yes, it feels good to be back in control.  I smile a broad smile with satisfaction.

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#16

This feedback I am receiving from this ‘blog to book’ is amazing.  I am so appreciative for all your words–anyway you get them to me is fine, here, email, facebook, or smoke signals.  And please keep sharing.  Thank you.

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We are waiting for Lisa to come.  Ryan has already had one session this morning with DJ. Another amazing session where Ryan does almost everything he says.  We are pretty solid into a routine of two sessions a day.  I am getting used to having them in my house and actually plan tasks around when they are here.  Just like Dr. Hunter said.

I am preparing his “reinforcer box” with cookies, m & m’s and goldfish.  Ryan walks up to me and hands me his sippy cup.  I take it from him as an “auto-mom” response, but remember I am supposed to prompt him to use the PECS (Picture Exchange Communication System).  I point to the piece of cardboard on the fridge that has pictures of food and toys velcroed on it.  He looks at them, finds the picture of milk and hands it to me.  I then say “do you want more milk?” as I make the hand signs for “want”, “more” and “milk”.  He looks at me and mimics the signs and I tell him enthusiastically “good job!”  He smiles his sideways sly smile and turns his eyes down.  I instinctively hug him.  It is a miracle to finally be able to communicate with him.

I decide to steal a little cuddle time and sit down with him while he drinks his milk.  He climbs up on the couch and I pull him to my lap.  He usually sits with his back to me, but he puts down his milk and squirms around and looks me straight in the eye.  This isn’t unusual for him to look at me—I don’t have to make him look at me like I do other people, with a prompt like “look in eyes”.  But it is the way he is so concentrated on me—he looks so deeply into my eyes, I feel like I’m being hypnotized.  I can’t move from his gaze.  I feel him giving me a message that does not come from pictures or sign language.

As I sit with him in my lap, lost in his gaze, I begin to understand his message.   I begin to feel I am being washed over with gratefulness.  I realize he is thanking me for “helping” him.  I interpret this to mean he is happy to find a way out of the dark place his mind was taking him too.  It feels like he is telling me he likes the therapists and enjoys learning.  I am in shock.   After so many days of listening to him cry during most of the sessions, not being able to interrupt, to think he is thanking me seems absurd.   As if he feels my doubt, he touches my face so I continue to look at him.  I hold his tiny hand pressed to my face and he smiles and sends another warm wave of appreciation with his mind.  I am so transfixed; I am not sure how much time has passed while he communicates with me.  I am reveling in this chance to “speak” with him just staring into the deep pools of his eyes.  It takes all I have to move away when the doorbell rings.

I carry him to the door with me, holding him closely, not wanting to let go.  I am in a semi-trance, wondering if he did just “thank” me.  Is that what he just told me? Am I crazy for wishing so badly for him to communicate that I felt something that wasn’t there?  As I open the door and let Lisa in, he does something he has never done.  He takes her hand and begins to walk upstairs with her.  It is usually a small battle to get him in the room, and most times he cries as I leave.  Yet, today, he is doing it on his own.  He turns back to smile at me as if to say, “It’s o.k., I’m o.k.”  Lisa looks at him and me with her eyes slightly raised as if to question but only smiles and walks with him.

I do not tell her just happened, or anyone for that matter, for fear of sounding crazy.  But I carry it in my heart; next to Dr. Hunter’s words…He has all the signs…All the while, trying to push out the ugly word that has become the center of our lives.  For now I am thrilled he found his own way to communicate with me.  And he reaffirmed that the therapy is working.  I believe in my heart he likes it…once again Dr. Hunter was right.

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