As the mom of a rock star with low tone, you hear the same things over and over. Some are sincere, kindhearted questions and suggestions.
Others are…not so kindhearted.
Here are just a few:
“He will catch up.”
I hope so. And we work on it every day. But he has real physical limitations. Ignoring that fact is a mistake. Low tone won’t magically go away. That’s why I do everything I can to get him all the help he needs.
“Why isn’t she walking yet?”
Hypotonia robs her of stability. But like everyone else, she’s learning to work within her own limitations. If I replaced your legs with two spaghetti noodles, how far could you walk?
“he’s just weak”
Nope, nope, nope. Low tone and weakness? They’re not the same thing. Kids with hypotonia can actually be very strong. But you know what real strength is? Overcoming the obstacles he faces every single day. “By that age, my child could…”
Stop. Comparisons don’t help anyone. It’s great that by 12 months your child could walk, run, and fly. But mine has low tone. She’ll go at her own pace, and there’s nothing wrong with that
“you baby her”
No, I just know my child. She may need a bit more TLC than the next kid, but we’re always moving forward, one inchstone at a time.
“When will he outgrow it?”
Outgrow? Never. Muscle tone doesn’t change. Adapt, overcome, and be awesome? Every day.
“You’re lucky she isn’t walking yet, otherwise she’d be getting into everything.” Seriously? I’d LOVE to be exhausted after a long day of chasing her around the house. Instead, I’m tired from carrying her from one appointment to the next.
She’s got lots to say, we just don’t understand her. 💛💙Language skills are greatly impacted in children with Down syndrome and they commonly have a speech delay as well as difficulty understanding and expressing his speech. Speech delays and associated problems generally stem from poor muscle tone in the area around the mouth can make it hard for your child to pronounce sounds correctly. Early intervention and individualized speech therapy can help your child target speech errors, increase intelligibility, and encourage literacy skills.
Down syndrome causes delay in vocalization and language acquisition causing some children to not start speaking until 24 to 36 months. Hypotonia also leads to feeding and swallowing problems. Children with Down syndrome are often born with narrow Eustachian tubes in the middle ear, which can make fluid build-up. This may affect your child’s ability to hear clearly, leading to language processing problems and delayed ability to understand spoken language..
Lets talk orthotics today. Gretchen has worn @surestep.products for more than a year now. .
The Surestep SMO has revolutionized orthotic management for children with hypotonia. Through the use of extremely thin, flexible thermoplastic, the Surestep SMO compresses the soft tissues of the foot with its patented design; stabilizing children while still allowing for natural development..
Surestep SMOs are carefully marked as ‘left’ and ‘right’ so the unique compression system can work its magic. Our products help to stabilize the foot and relieve stress on ankles, knees and hips so your child can grow and develop as a happy and healthy kid. .
I have had several people ask me about Gretchen’s braces on her feet and I wanted to share the why, she has hypotonia, due to having Down syndrome.
What is hypotonia?
It goes by several names. Hypotonia is the medical term, but low muscle tone and floppy baby syndrome are also common. No matter which words you use, the definition is the same. Kids with low tone are sometimes compared to rag dolls. Limp limbs. Soft tissue. Decreased stability. And because of these obstacles, many kids reach milestones (grabbing, crawling, cruising, etc.) more slowly than others.
When little G started pulling up her physical therapist made the call to get her fitted for @surestep.products orthotics. She’s now on her third pair and I know that she wouldn’t be walking as well without them. And look at those adorable patterns with tons more to choose from. .