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You’re Not Alone

It’s been a rough week. There was so much violence and death reported on the news it’s difficult to even register the full gravity of it all. On top of that, loving parents on vacation with their son learned the hard way that, in Florida, deadly efficient predators lurk in water so shallow even adult fish would prefer not to swim there. Did I know that before this week? Yes, I did. Would I expect anyone else to know who doesn’t live in the areas these predators thrive? Absolutely not.

Next week we meet with therapists and a teacher from our state’s early intervention program to discuss our son’s progress and our goals for the next year. He was tested last week by neurology and the teacher. It was devastatingly obvious he’s behind. How far behind is difficult to discern. Neurology told us he’s performing between 18 and 24 months in general. The teacher gave no hints about what she thinks. We’ll find that out next week.

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Pre-Order Now Available for, “Becoming a Medical Mom”

Pre-Order The Book

It’s been a while since I mentioned the book, but I wanted to let you all know it’s coming at long last! It’s available for pre-order right now. It’ll be released on October 15th, in less than a month. I know, normally pre-orders last longer than that, but my life is just too unpredictable to commit to a specific date a lot of times.

A “Medical Mom” is a mother of a child with medical difficulties. Typically these mothers have been through one or more hospital admissions. Their child may or may not have a diagnosis. At first they’re frazzled and unsure, but over time they become staunch advocators for their children and their medical needs. My goal is to reach the frazzled and unsure beginners and expedite their development into the advocates their children need them to be.

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The Difficulties of Being a Parent to a Child with Hypotonia

At six months our son was just starting to lift his head. At sixteen months his arms were still too week to support crawling, despite being in occupational therapy (OT) for over a year and physical therapy (PT) for three months. We did tummy time. We tried every trick in the book recommended to us. With the help of OT and PT he’s not falling further behind, but he’s certainly not catching up either.

He struggles with what’s called Hypotonia, or low muscle tone. He’s much more flexible than you would expect a child to be. He can put his feet up by his ears without even straining and he’s well over a year old. This flexibility causes him to need additional strength to keep his muscles in place, and he can’t make progress on physical milestones by himself because he lacks the strength to lift the weight of his body and head without significant assistance. Thankfully, with help he does get stronger. However, if you left him to his own devices he doesn’t work on his physical milestones like you would expect. In fact, he doesn’t work on them at all.

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Caring for a Child with Special Needs has Been a Growth Opportunity

In my experience, when people look for growth opportunities they usually talk about things like traveling, training, or networking with a specific community of people. I’ve done all of these things, and they certainly do expand your horizons. For me, none of them have done nearly as much to grow me as a person as caring for our son with feeding difficulties.

After talking to other moms, I’ve come to understand it’s different to care for a child without health problems. Then, you’re balancing between how much attention is appropriate to give them versus how much independence you can gain for yourself to accomplish your tasks for that day. The balance is different for us. We know exactly how much attention our son needs, and most of it is spent making sure he’s fed and actively performing his assigned physical therapy exercises. I don’t think of it as less time for him is more time for me to do what I need to do. Less time for him is slower progress toward walking and crawling independently.

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RQ, What Health Problems is Your Son Struggling With?

I was recently asked by a reader what our son is struggling with. I had avoided discussing it because I didn’t want to burden anyone with the details. I wasn’t sure if the specifics would be unnecessary, and I didn’t want to make anyone uncomfortable. I realize now that it would help people understand where I’m coming from if I shared more about his situation.

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