Our life in five words:
busy, therapeutic, funny, musical, physicalFour qualities I look for in a therapist:
- Clear goals
- Open to ideas and going into the community (for real life experiences)
- Keeps appointments
- Challenges my child
Three resources I can't live without:
Trampoline - Tom is a high energy child and he needs physical stimulation to replace the visual stimulation he is missing because of his blindness. A trampoline has been a great way for him to release some energy that doesn't depend on weather.
iPad - Tom listens to audiobooks, plays games and listens to music on his iPad.
We use it EVERY day. I want him to grow up comfortable with technology.
My blog about Tom - It helps me share the things I have learned and the
resources I have found. There are so many things that I wish I had known
earlier and I love being able to share that with other families. It
also allows me to connect with other parents of blind children and there
aren't that many of us so it's very nice.
Two words (or more!) of advice for therapists working with children:
As a parent, I truly value the therapy my son receives (through EI and
privately.) I am constantly searching for information and new ideas for
my child. I feel very lucky that my son's therapists have been open to
my ideas and questions. When I have concerns they have gone out and
researched options and taken me seriously. I will really miss my son's
EI therapists when he turns three in the fall. We have become friends!
A word of advice for the parents of a child newly diagnosed with blindness, microcephaly, hypoplastic corpus callosum, or hypertonia:
Well my son is a bit of a mystery because, while he has many
diagnoses, he does not have an official syndrome or name to his overall
condition. He has bilateral Persistent Fetal Vasculature Syndrome
causing him to be born with detached retinas. He has had many surgeries
and is blind with light perception. He also has microcephaly, a
hypoplastic corpus callosum and hypertonia. At first the diagnoses were
overwhelming and terrifying. We heard many things like, "if he walks,"
and, "if he talks." But no one has a crystal ball and they don't know
what is possible. You can only do the best you can for your child and
treat them as the wonderful being they are. I choose to believe that
Thomas is capable of amazing things and he has been proving me right
again and again.
I
gained so much by embracing my child's diagnoses. At first I learned
all I could about his diagnoses and then I concentrated on what I could
do to help my son. I live in a city (Pittsburgh, PA) with a lot of
resources for special needs and great medical centers. That has been a
tremendous help. I still wish there was more of a community for moms of
special needs kids for playgroups and other opportunities. I found that
because I was aggressive with pursuing opportunities for my son that
others kept us in mind when openings became available. Tom is in a
preschool readiness group through our early intervention provider that
has really helped him socially. He has more challenges (medically) than
the other kids in his preschool group and I am glad that he was chosen
to participate. Often people think that blind people will not be able to
participate as fully as others but that has not been the case at all. I
think he is changing people's attitudes about what blind children are
capable of and that makes me so proud.
Thomas also has a feeding tube
(gastronomy tube) due to failure to thrive. This has been harder on us
than the blindness for sure! He has thrived with a g-tube and we have
been working on his feeding skills for the past year. We are in the
process of weaning him from the tube and it is exciting to see him eat
food and enjoy it. It's a long road but I am seeing progress.
One dream for my child:
Independence! Which will come from a great education and blindness skills like cane training and Braille.
And finally, what I do to rest and recharge:
My husband and I go out for dinner and cocktails once or twice a month. It's nice to have some time just for the two of us.
Thank you, Jessica for sharing your perspective! Thomas Marshall really does do it all! Please be sure to visit Jessica and Tom's blog at www.thomasmarshalldoesitall.blogspot.com to follow Tom's journey and for more resources and information about children with visual impairments, g-tubes, iPad apps, and so much more!
What a cutie pie he is! I'm with ya on the being sad when they turn three and leave EI. It was very hard saying goodbye to our beloved therapists. Thankfully, many of them still in keep in contact with us and are always there when I need some helpful hints are even a shoulder to cry on.
ReplyDeleteGreat post. Hope you keep doing ones like this with parents - really helps therapists see the other side. It also helps that I love the ThomasMarshall blog to begin with - the positive attitude is great and the ideas for Thomas are very creative.
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