Jess was continuing to grow and develop. She had a large vocabulary that sounded so cute coming out of her little bitty body in that little bitty voice. She had an adorable, teasing, bubbly personality that has stayed with her and is one of her biggest assets. 

Our time with Georgia PINES was wonderful. Other than our time in Texas, the people from Georgia PINES were a big part of our lives from just after surgery until Jess started school. The Parent Advisors were warm and friendly and felt like family. They loved Jess and continually taught us Early Intervention techniques to help her.

Occupational Therapy Assessment

To give an idea of function level, I want to share an Occupational Therapy Assessment done by Georgia PINES. At the time, she was 10 days away from turning 2-years-old. The following are some points made in the report.

• Cooperated well but had trouble staying on task.
• Gross motor skills were close to age level in standing, walking, kicking & ball throwing. Limitations with these activities were due to vision.
• Trouble with stepping over objects & judging depth.
• Stairs and uneven surfaces are a problem.

  

• Problems with balance may be due to vision rather than  physical problems.
• Jess is low tone & has corrective arch supports but has difficulty tolerating them.
• Remembers where objects are kept.
• Can pick up objects with fine pincer grasp R & L.
• Scribbles w/ crayon but no hand preference.
• Self care skills more delayed.
• Largest deficit area was in social speech and social interaction.
• Problems gesturing yes/no.
• Due to vision, she does not point.
• She does not state her name when asked or prompted, but can repeat her name when asked.
• Able to feed herself finger foods & hold a cup with both hands.
• Family feeds Jess as she has difficulty with scooping food & bringing to mouth.

Guilt and Second Guessing

Regarding the family feeding Jess… That point reverberates in my head. Questions seep in. Did we help her too much with her feeding? For too long? Did we do the right thing? For a minute, imagine yourself with your baby. What if your baby couldn’t see and had decreased coordination. Can you imagine how you would teach your baby to eat independently? Can you imagine how it would feel to sit back and watch her try? Watch food continually fall off the spoon before it got into her mouth? It is difficult enough to watch that with a sighted baby as they are learning to eat independently.

I do second guess myself at times. When I do, a twinge of guilt surfaces. Then I remember we did the best we could with every situation we were faced with. We had constant support and guidance from the professionals that were helping us. The picture above is Jess working on her birthday cake, a good motivator for her to be independent with a spoon because she didn’t like to get her hands messy.  

It was wonderful any time we found products that aided her success in self-feeding. At everyday meals, we used divided plates and bowls. That way, as she scooped, the spoon pushed up against the walls of the dish. Some of the dishes we had were similar to this where not only is it divided and has walls to push against, but it also has a lip around the top that helps guide the food onto the spoon as it is being lifted out of the dish. This dish has a non-slip base. Some of the dishes we used had a suction cup on the bottom to secure it to the table or high chair. 

We had some various utensil designs we tried also. One was a set similar to these EasieEaters Curved Utensils which are designed to promote greater success with hand-to-mouth feeding and the built-up handles make them easier to hold.

Others were like these Sassy Less Mess Toddler Spoons that can be found at places like Walgreens and Walmart. The angled bowl helps guide food to the mouth with fewer spills. The holes in the bowl actually help food cling to the spoon longer.

Our every day process to encourage independence was letting her try feeding herself, with us giving her bites of food every few tries to minimize frustration. It might have taken years before she was basically independent with eating, and there are still certain things she can use help with to not make a huge mess. Messes at home are no big deal. But, messes with a 27-year-old in social situations can be a bigger deal. It comes down to which matters more at the moment; weird looks we get from helping her with her food, or the embarrassment of making a huge mess in a formal setting or someone’s nice clean home, for example. 

She can use a fork, but does better with a spoon. When she is really eager or afraid she might miss out, she will try to sneak and eat with her fingers. We sometimes have to remind her to stop doing that and use her spoon.

Because, honestly, as an adult, it really doesn’t look cool to eat green beans like a finger food snack.

Next:  Danger Awareness