Guest Post: Superhero Training with Holoprosencephaly- One Mom’s Story

Welcome to another Monday and yet another week of speech, language and feeding tips here at Simply Stavish. Everyday at work, I help parents teach their child specific strategies to grow their language, speech and feeding skills. Often I get pretty attached to the families I work with. They are strong and courageous. They would do anything for their child. In honor of all families of children with disabilities, I will be highlighting a story of a child with a disability the first month of Monday for my weekly feature, Words in the Sand (formerly known as Mommy Minute Monday).

I couldn’t think of a better way to begin this new feature than with my blogging friend Sarah Halstead of The Naptime Momtog. Sarah is an amazing mom of two adorable little boys and a fantastic photographer. I have learned so much from her photo tutorials. I hope to meet Sarah and her adorable family in the next few weeks when we visit Virginia Beach. Welcome Sarah!

Being a mom of a superhero is hard work. We have superhero training three times a week every week. We also do one on one training throughout the whole day. He also needs his sleep to fight and he sure does love his sleep. I feel like I am constantly feeding him so he can keep up his strength to fight.

What is he fighting? Holoprosencephaly or HPE for short. He actually has MIHV HPE, but there is also Lobar, Semi-Lobar and Alobar. Since he has HPE which is a brain malformation he also has Cerebral Palsy. Which is the cause of most of his problems.

We do physical, occupation and speech therapy to help with his CP. We are in the midst of getting him a gait trainer. We use a lot of play during occupational therapy. We also have the iPad to help with finger pointing and hopefully speech one day. Still looking for the write app for Carsyn. His main problem right now is hitting the actual button he wants. He uses a lot of eye gaze and noises to let you know what he wants. You will know it real quick if it isn’t what he wanted.

A typical hour of Speech Therapy consist of a bunch of mouth exercises. Which he tolerates really well, and he has started doing some of his own exercises. He has constantly putting his fingers in his mouth. After the exercises we do some play like blowing bubbles trying to get him to say the “B” sound. Which is something new that he has been doing. You can see him trying so hard. We have even started to get him to say Bubba for his brother. Sweetest thing ever!! Most of the session is filled with play, lots of having him look at the therapists mouth while she is saying a word. You see his mouth moving trying to mimick her. She also uses some signing. His hands don’t work like they should so typical sign language probably won’t work for him. The last part of Speech Therapy we try out different speech apps and games on his iPad. This is his favorite part. He LOVES his iPad.

Outside of his normal therapy, Kenny and I try and work with him on words, read him a lot of books, and do some fun play. I do most of his stretching. I am suppose to do it three times a day, but it is soooo busy around here and he takes a good 3-4 hour nap everyday. This is our life with a superhero. May not be what I thought our life would be right now, but I wouldn’t trade it for the world. I love Carsyn with all of my heart and I could not picture my life without him.

Thanks for having me Mindi! If you all have any questions feel free to email me. You can find me on Twitter, Facebook, Pinterest and Instagram.

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Tagged as: cerebal palsy, families of children with disabilities, holoprosencephaly, ipad technology for language, speech and language delay