First Steps in Communication

Upon entering the waiting room he points up at an EXIT sign, lit up in brilliant red. “Are you showing me the sign? I notice you look at signs a lot, especially EXIT signs. You have always loved looking at signs, haven’t you?” He looks really pleased, lets out a little laugh, and then turns to me. “Yeah”, he says.

We are on the floor playing a tickle game. “Here comes the tickle finger! Where do you want to be tickled? On the chin, under the arm, or on the belly?” “Belly”, he blurts out, roaring with laughter as the tickles come. “Stop”, I say and pull away. He looks at me, smirks, and holds up his finger. “Oh I see! You want more tickles!” As I move in closer, he giggles and squirms in anticipation, folding his arms across his belly.

We are outside having a BBQ. He points indoors and does the sign for sleep. “It looks like you’re tired. Do you want to go to sleep?” He nods. “OK. I’ll finish my drink then put you straight to bed.” He does the sign for book. “Ah! You want me to read you a bedtime story first?” He points at me then reaches over and gently touches my arm.

We arrive back at the hotel room. He points to the bed and pats it hard with his hand. “Are you telling me you want me to help you onto the bed?” He smiles, points at the bed again and jiggles up and down. “Do you want to bounce on the bed?” “Buh”, he says.

We’re halfway through Sacha’s intensive therapy programme at the Floortime Center in Maryland, where he has been spending three hours a day developing some of the foundations necessary for communication. We had long planned to do a major trip here during the final summer before Sacha started school, to prepare him the best we could.

The Floortime model is a “relationship-based” therapy developed by Stanley Greenspan which is often used for children with significant difficulties on social and communicative levels. It’s a fun and play-centred approach that follows the child’s interests at every moment: Sacha spends the day on swings, trampolines and slides, and enjoys playing with the therapists.

His progress so far— especially in preverbal communication, which is a necessary foundation for the development of more complex language—has been striking. The fragments above are descriptions of a few tender moments of interaction that have happened outside of the therapy space. These kinds of communication were almost unheard of for Sacha prior to starting this programme.

“To understand and use words and language, children must first be able to engage with complex emotional signalling, which allows them to separate actions from perceptions and hold images in their minds. They must also be able to connect these images with their emotions to give them meaning, thereby forming symbols and ideas.”

Stanley Greenspan & Stuart Shanker, The First Idea, 2006

Communication is something most people take for granted. We feel profoundly connected to Sacha, even without conventional forms of communication; we connect through facial expressions, physical contact, the subtlest of gestures… We’ve learned to inhabit a form of togetherness that’s tender, warm, but largely unspoken. But Sacha has generally struggled even on the preverbal level—pointing, nodding, gesticulating—that comes easily to most children.

The absence of clear means of communication is a real struggle. Not being able to express your feelings—that you are scared of the dark, feel sad about leaving nursery, or anxious about starting school—is profoundly frustrating, and not knowing what your child needs or is feeling can—at times—feel terrifying. Little moments like those described above—where clearer, direct and more purposeful communication begins to emerge—thus represent a radical shift for us. It’s not just a matter of spoken words or signs, but all the small gestures that make up the interaction: the pointing, the anticipatory responses; the general back and forth.

State provision of Speech and Language therapy in the UK—as with all paediatric therapies—is so thin on the ground even the most talented and dedicated therapist will struggle to have a really transformative impact on a child with a serious condition like Sacha’s. Nor is expensive private speech therapy a great alternative: intensive therapy programmes are hard to come by, and many therapists struggle to work with complex difficulties like Sacha’s.

But after just one week of intensive Floortime therapy, Sacha was the most communicative we had seen him since he was 1 year old. As the programme progresses, we see him gradually starting to find his feet in social interactions and communication. This therapy is enabling Sacha to express himself—and us to connect with each other—like never before, and there is something magical about those joint first steps in communication.

Though we had been hoping to give Sacha an intensive Floortime programme for a while, this trip came together in the most chaotic of circumstances. Already bereaved once in the year, with the devastating loss of my mum—one of Sacha’s favourite people—Rob’s mum was taken seriously ill in early summer, leading us to shelve our plans. She had only recently come to really understand Sacha’s struggles and the importance of his therapy programmes, and had started to care profoundly about his situation.

In one of the last conversations we had with her, she insisted, with tears in her eyes, that we should get going, leave her behind and start working on Sacha’s communication. We of course couldn’t just leave her dying; we stayed with her until the end. But it seemed right to pull the trip together last minute, only a few days after she had passed, with little planning and no time to fundraise properly—just gambling on figuring it out somehow. After all, the stakes seemed high: could Sacha really start school in September without even the rudiments of communication?

We’re very pleased to have taken this leap, as with his growing confidence in preverbal communication it gets easier to imagine him finding his way towards symbolic communication and learning, in the right environment. Sacha will be going to a good mainstream school which seems serious about integration. He’ll have two aides to support him through the two halves of the day—intelligent people with a real interest in special needs education. At the end of Sacha’s intensive Floortime programme, the therapists will be giving them guidance on how to integrate Floortime techniques into the school day, with the goal of maintaining some of the momentum of his current programme.

We’re proud of the warm, interesting and funny person Sacha continues to become and can’t wait to see what the next few years hold for him. Over the last few years, the generosity and solidarity of so many people has been profoundly moving. It has enabled us to give Sacha opportunities to thrive, and the result is palpable on a gross motor level: while movement still presents challenges, even many of the typical activities of kids in the park are within reach. Following a prognosis where all kinds of limitations were seemingly placed on his future, he has gradually defied many odds. Communication is the next challenge.

Please help us complete this Floortime programme! You can do this either by donating, or by circulating widely. Your support is always sincerely appreciated; these therapy programmes couldn’t happen without it.

Sacha’s current crowdfunder can be found at:

https://www.justgiving.com/campaign/DNAISNTDESTINY

Help Sacha learn to communicate!

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