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
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
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.
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
This is a comment from facebook that I wanted to share here…
“I remember your mother telling me, when Jess was young, that Jess was so blessed to have a very young mother who was not afraid to let her explore, even at the risk of an accident. That ability on your part has payed a huge dividend through the years, and has enabled Jess to reach out toward her potential in ways that wouldn’t have happened otherwise. I must say that at times we actually held our breath (and our tongues) when seeing her do things that scared us to death. But even then we knew you were letting her reach greater heights. You have done a wonderful job with her, and she is still blessed, as are those who know her.”
As difficult as it is, letting our children explore is so important. Especially when a vision impairment is part of the diagnosis. Getting out into the environment and actually doing things hands on is the only way to experience many things. The same is true for babies and toddlers with a vision impairment. Of course, to keep them safe, it is imperative to be right there to soften the fall if and when it happens.
Nat
Jess is so fortunate that you had the nerve and foresight to allow her to experience life to its fullest. She loves life and adventures! I’m afraid her grandparents didn’t have the nerve many times.
Your style on that is a good tip for parents.
Thanks Mom. I’m sure my style on that raised eyebrows a time or two though 🙂
Ummmm, I sometimes eat my green beans like it is a finger food snack. Don’t tell Jess.
Lol Angela!