A Parent's Perspective - Thomas Marshall Does It All

Today I am pleased to welcome Jessica of Thomas Marshall Does It All to share a parent's perspective on life with a child with special needs. Jessica is the mother of Tom, who will be turning three this fall. Tom has several diagnoses: blindness (Light perception, Persistent Fetal Vasculature Syndrome), Microcephaly, hypoplastic corpus callosum, and hypertonia, but that doesn't slow him down! He is running and jumping and doing many things that people said he probably would not do. Tom has a delay in speech and uses a combination of sign language and spoken language to communicate. He has been through many surgeries and procedures but he is a happy and carefree child. "I feel very lucky to be his mom. I can't want to see what he does next!" ~Jessica

Our life in five words:

busy, therapeutic, funny, musical, physical

Four qualities I look for in a therapist:

1. Clear goals
2. Open to ideas and going into the community (for real life experiences)
3. Keeps appointments
4. 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.

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.

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.

 

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!