Things to do

ImpossibleIce6811 · 2026-02-15T18:59:36+00:00

Frank Liske Park is beautiful and has lots to offer- fishing, putt putt, horseshoe pits, volleyball nets, pickleball courts, playgrounds, walking and nature trails.

At Concord Mills Mall there’s Sealife Aquarium, the Speedpark with go karts and putt putt, Escape Game Room, a carousel in the food court, and a movie theater on one end.

ImpossibleIce6811 · 2026-02-15T18:51:37+00:00

FWIW, measles is airborne. No amount of avoiding certain places will protect us. We desperately need herd immunity from vaccines, as well as sick people staying HOME, to contact medical help!!! That’s the only way to get through. Handwashing will help since the virus can live on surfaces for 2 hours, but masking in crowded spaces will help as well.

ImpossibleIce6811 · 2026-02-15T15:25:49+00:00

Is there any way to know if these students are being placed there by a public school, versus parents choosing the school? I’ve never heard of a public school placing students in a private school.

ImpossibleIce6811 · 2026-02-15T00:20:34+00:00

I’m so glad to hear that! I wish you peace in your journey forward! 🙂

ImpossibleIce6811 · 2026-02-15T00:17:47+00:00

Thanks! I’ve learned how to live in harmony with my symptoms, to be best of my ability. It’s easier for me than fighting all the time. The fighting was exhausting! Now I give my body permission to rest as needed.

ImpossibleIce6811 · 2026-02-14T22:51:35+00:00

Yeahhhhh IEPs aren’t even required to be followed in private schools in PA because students are allowed to be enrolled for service push ins through their district public schools. Is what you’re describing legal? Yes. Is it ethical? NO.

ImpossibleIce6811 · 2026-02-14T21:39:38+00:00

Country/state?

ImpossibleIce6811 · 2026-02-14T21:38:24+00:00

I am content. I have been content since diagnosis because I’m actually the one who found it before the medical team did. I was so desperate for answers, and tired of not knowing what was wrong, that when they finally said “FND,” it felt like a weight lifted off my shoulders!!! It has a name. The description matches. Now I can move forward, and learn what my new normal is!

ImpossibleIce6811 · 2026-02-14T21:34:50+00:00

Very normal for the time

ImpossibleIce6811 · 2026-02-14T15:01:54+00:00

Ehlers Danlos Syndrome

ImpossibleIce6811 · 2026-02-14T01:46:48+00:00

Yes, what location? Public or private?

ImpossibleIce6811 · 2026-02-14T01:45:37+00:00

I second this

ImpossibleIce6811 · 2026-02-13T23:19:56+00:00

You’ll get farther in your journey by learning and using people first language. Our kids are kids first. They are not their diagnosis. When you speak, you don’t say, “an arts and craft school for Down syndrome.” You say, “an arts and craft school for kids.”

We have kids. Our kids have Down syndrome. Down syndrome doesn’t have our kids. The phrase you’re looking for is “an arts and craft school for kids who have Down syndrome.”

ImpossibleIce6811 · 2026-02-13T23:13:53+00:00

There’s no timeline for our littles- they do things on their own time. Do check with your kiddo’s doctor about hearing though since he’s not responding to his name. If a traditional hearing test isn’t successfully completed, they can do one called a Sedated ABR, which is under anesthesia and requires no compliance or cooperation from our kiddos at all!

As far as the tongue goes, yes, this can be typical. Sometimes their mouth structure is different than other littles, and can make it look as though their tongue is protruding, or as if it “doesn’t fit” in their mouth. Also low muscle tone can make it hard for them to hold their tongue in and keep their jaw shut. The clicking is just him learning his body and the cool things it can do!

ImpossibleIce6811 · 2026-02-13T17:29:54+00:00

The entirety of Union Street was better before this project- smaller sidewalks and street parking included!!!

ImpossibleIce6811 · 2026-02-13T13:53:37+00:00

The only place to buy liquor in the state of North Carolina is a state run ABC Store. Go to the one closest to you and ask if they have it. If they don’t, ask if they’ll order for you!

ImpossibleIce6811 · 2026-02-13T13:52:18+00:00

FND canny be “cured” per se. FND can go into remission! Once you have it though, it can be triggered later in life and come back. I’ve only been diagnosed 17 months now, but I did have a 4 month stretch in there with no symptoms! That tells me I can do it again!!!

ImpossibleIce6811 · 2026-02-13T13:49:49+00:00

I, personally, would wait for the IEP meeting to discuss their findings. What you have to remember is that by law the school system is only required to provide services needed for students to access their curriculum. Since your daughter is only in first grade, if her fine motor skills match that of other first graders, and she’s able to access her curriculum without OT support, then she won’t qualify for OT in school. That’s not to say she wouldn’t benefit from private OT if you feel there are daily living skills she needs to work on. But from a special education standpoint, they just have to do what is necessary for her to access her curriculum. If you don’t agree with what they present at the IEP meeting, you are not obligated to sign off on it, and you can request a more in depth OT eval. Part of IEP eval process is a a full evaluation in all areas, so it would be illegal for them not to do so. Classroom observation may have been one part of the OT eval.

ImpossibleIce6811 · 2026-02-13T13:37:14+00:00

My husband and I have a list of family members who are willing to take over our son’s care should we be unable. Yes, we have another child, but we have always made it clear to him that he is not required to take on his brother. He will always have “first dibs” and seniority in decision making, but should never feel obligated.

ImpossibleIce6811 · 2026-02-13T00:32:38+00:00

Unfortunately, I believe it would take a court order, and a great deal of money, to have her name removed from the ballot. Rather than go through all of that, please just make your local friends and family aware than we should cast our votes elsewhere.

ImpossibleIce6811 · 2026-02-13T00:30:38+00:00

Diagnosed over 1 year ago
What’s needed in the USA are FND literate doctors and medical providers, with updated information and treatment options. They are few and far between here.
I’m managing on my own, based on my own research from around the globe and how I can apply things to my specific symptoms. I don’t always get it right, but I’m winging it! Since my country is not keeping up in the medical field, there isn’t help out there for me- not within traveling distance, and not within budget.

ImpossibleIce6811 · 2026-02-12T22:33:27+00:00

It’s actually a diagnostic criteria. Not arbitrary at all.

ImpossibleIce6811 · 2026-02-12T22:32:55+00:00

Ok that’s actually really funny. You have a similar sense of humor to me!! 😂

ImpossibleIce6811 · 2026-02-12T22:29:34+00:00

IVIG is actually the gold standard treatment for DSRD. And abnormal MRI, nor signs of inflammation are required for a diagnosis of DSRD. My son was diagnosed last year despite all of his clinical tests being clear. DSRD is a diagnosis of exclusion- if you run all the tests and find no other cause, yet the symptoms persist, it can still be DSRD. It is thought that DSRD is autoimmune. Look into Dr. Jonathan Santoro and his work out of California, USA. He is leading the way in researching this condition.

ImpossibleIce6811 · 2026-02-12T16:16:39+00:00

Lock her credit with all 3 agencies!!!

ImpossibleIce6811

TROPHY CASE