Then, shortly after Nik began attending school in June 2006, it all came to a screeching halt. We watched as the school OT, then the teacher, then a couple of paraprofessionals all tried different ways to get him to eat. The OT began her campaign while Nik was still eating some —though the quantity was dwindling with each passing day; she was determined to teach him “the right way” to feed himself. “Give us some time to get to know Nik,” she said. “Let us try it our way for a while and see how he does.” To me, that was the beginning of the end of Nik’s eating as we then knew it.
By September of that year, Nik was refusing absolutely every attempt to feed him. He was content to sit and clamp his lips together and push away the spoon or throw it if you gave it to him. He would laugh hysterically as if to say “The joke is on you!” We went through great angst over this new development. We saw a behavioral psychologist, outside speech and occupational therapists for evaluations —we even went to Children’s Hospital of Philadelphia (CHOP) to see specialists in the pediatric feeding and swallowing program. No one was able to figure out why Nik wouldn’t eat or what to do about it.
I had my theories but couldn’t prove them —that Nik had been forced into something at school and he rebelled. That the total school experience was too much for him and he couldn’t pull himself together enough to eat on top of all the other demands being made of him. I knew then that Nik has significant sensory issues but no one was willing to listen. Even the “brilliant specialists” at CHOP ignored our concerns over sensory issues and discounted the PDD-NOS diagnosis Nik had been given nearly a year before they saw him. Their advice was simply to ignore the negative behavior and it would go away. We knew instinctively that was not the answer.
Niksdad and I were frustrated and downhearted about what the future might look like with a feeding tube as a permanent fixture in our lives. For a very long time, I held on to hope and kept trying new things on my own with Nik every once in a while; nothing seemed to help with any measure of consistency. After a while, we stopped trying —we even stopped seeing the behavioral psychologist; after all, she was supposed to help us with the feeding issues and we had reached an impasse. We surrendered to the presence of the hated feeding pump.
It is a natural and normal part of being a mother to nurture and nourish your child. Yet, for the second time in Nik’s young life, I felt that I had failed him. When Nik was born, so tiny and fragile, I was unable to breast feed him; he was on a ventilator and I couldn’t produce enough milk. After six weeks or so of valiantly trying to express what milk I had and only getting a few ounces a day, I had to concede that I would not get to experience that critical bonding with my child.
Now, nearly three years later, I felt that I had again not measured up as a mother; it was a bitter pill to swallow.
September 2007; we took Nik out of school. We were tired and frustrated and very concerned that our son was retreating further and further away into his own world during the school week and taking days to recover. Every weekend —and every week he was out ill from school —the Nik we knew would start to emerge again only to disappear shortly after returning to school. After withdrawing Nik from school, we began to have regular individual OT, PT, and Speech therapy sessions. Bit by bit, Nik began to return to his usual happy, energetic self —in spite of his ongoing health issues. By the time we started with dedicated feeding therapy twice each week, my sense of hope had returned in full.
Nik’s therapist, Miss M, is the same SLP that followed him through the early intervention program with Easter Seals; she has known Nik since before his second birthday and loves him like her own child. He adores her and trusts her implicitly; they have a very strong bond and affection for one another. On top of everything else, Miss M gets Nikolas completely. She doesn’t exactly understand the autism piece, but she sees how smart Nik is and how determined he is to communicate and participate in his own ways. She follows his lead and she seeks my input and insights all the time.
Nik is still not eating by mouth but he has come light years beyond where he was just three short months ago. Nik is now interested in nearly all food except baby food; if he sees a jar of baby food, he will push it away and refuse to even try it. He wants REAL food —the food all the grown ups are eating.
Nik has never been big on finger foods. He used to get very upset when his hands got dirty; no surprise there to anyone whose kid has sensory issues. As Nik has gotten more exposure to a variety of things both at home and through OT, his tolerance for messy, sticky hands has improved greatly. Where once Nik would pick up a cheerio or a goldfish cracker and throw it, he now brings them to his mouth to sample. Often he will throw the first half dozen or so before he settles on one to savor —licking, kissing, and sucking on the poor thing until it’s a mushy mess.
Nik has taken a bite or two of solid crunchy food before but it was kind of snuck in by using a thin pretzel stick in the chewy tube. The first time scared him so badly he wouldn’t even touch the chewy tube for a few days. Miss M said that’s normal; the sound is usually very startling. She said it sometimes takes a while after that for a child to try again.
He had been savoring one particular goldfish cracker, holding it by the head, when he gently put his teeth on the tail fins. He didn’t apply any pressure; he just felt the fish between his teeth for a moment. He took it out of his mouth and looked at it with a mixture of pride and curiosity. Going back for a second attempt, Nik applied more pressure this time and broke off a fin in his mouth. Both Miss M and I held our breath as we waited for Nik to begin to gag. The gag never came. Nik didn’t swallow the piece (which was about the size of a grain of rice) but he didn’t gag; he merely worked his tongue around until the bit of cracker was forward enough for him to remove it with his fingers. Miss M and I cheered loudly.
We haven’t yet seen a repeat performance but I know it is coming —Nik is far too interested in food not to persevere. I believe and trust in my gut that the day is not far away when Nik will figure out this business of chewing —of eating. And when he does, I expect he will take on the world —one bite at a time.