Every Day Life

https://youtu.be/k6dotU7LPpk

Holt-oram syndrome can cause some inconveniences in day to day life. Pandora and Jude both face numerous obstacles on a daily basis. This blog is not to focus on their difficulties but how we help to overcome these obstacles in various ways.

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At first we were absolutely lost as to how we could help the kids with everyday tasks. Myself, never having to make any modifications to my own environment, caused me to become overwhelmed. How where they going to eat? How on earth could they go to bathroom, or dress themselves? What about when they go to school?

All these questions were daunting and we had a great support system to help us figure them out. (Some of them we are still working on.) Our team of doctors, therapists and teachers have been great at helping to set free my creativity and give me the inspiration to envision how we can change or modify things for the kids.

I could go on and on about all of the things but for sake of keeping this short I will stick to the three questions from above. (If you have anything specific you want to know how we have handled or are struggling with feel free to ask us in the comment section below)

How do they eat?

They eat like anyone else, with regular utensils and on normal dishes. However, it wasn't always like this. Larger dishes and utensil pose a problem for many kids as they are made specifically for

an adult sized hand. As a toddler with hands that may function like the average person these utensils can pose some significant stress for a child learning to feed them selves.

For Pandora and Jude we specifically purchased this dish set. The thicker handles on the silverware made holding them much easier, small bowls, cups and plates allowed more independence while eating drinking and cleaning up dishes. If you want to see a video of them using these dishes check out our YouTube.

How do they dress themselves and use the bathroom?

With great difficulty.

Pandora and Jude can put lose fitting shirts on by themselves for the most part without extra tools. Pandora is able to put on her own socks and shoes, provided they do not need to be tied. And lastly, with he help of a dressing stick she can take off and pull up her own pants and underwear.

If your child is embarrassed by carrying the dressing stick around offer them the option to "customize" it with paint and stickers, this can sometimes help to lessen that feeling.

How do they manage in school?

Pandora starting preschool I would argue was the most stressful thing for me, when it comes to her. I was and still sometimes am afraid of EVERYTHING. She is in fifth grade now but bullying, accessibility, safety, and the teachers have always been my largest concern. Over the past few years I have been overwhelmed by the amount most her teachers have done to accommodate her and her needs. Pandora has been making great friends, and doing well in school.

Her accommodations include many things from use of a computer for typing when she tires, all the way to assistance using the bathroom and retrieving her lunch. Pandora has a dedicated aid that she shares with her brother for these tasks and for the most part can manage most of the school day by herself.

I purposefully am not talking about Jude at school in this post because his needs go above and beyond Pandora's and majority of his accommodations stem from his other medical conditions which will I will address in another post.

What can you do for you school aged child?

Maintain open communication with all members of the district and school regarding needs. Do not be afraid to ask questions and express your concerns. If your child is not receiving services that have been laid in their IEP or 504 you are protected by the American's With Disabilities Act and we highly recommend speaking with a Special Education Lawyer about your and your child's rights.

~Shauna