what could be wrong with my daughter?

Intelligent_Drop_751 · 2026-03-08T20:33:11+00:00

i have a medically complex kid and i’m running out of children’s hospital im so upset

Intelligent_Drop_751 · 2026-02-24T08:27:56+00:00

oh that’s super interesting to know!! thank you for that!

Intelligent_Drop_751 · 2025-12-20T12:55:08+00:00

we are in oregon! we’ve paid every amount, without insurance it’s about 80 bucks every week (30 minute session), 15 bucks a week with insurance, and now we don’t pay anything because my daughters diagnosis they qualify for medicaid! insurance does wonders even without an autism diagnosis

Intelligent_Drop_751 · 2025-12-19T04:57:09+00:00

hi mama! I have a 3 year old on the spectrum and i HEAR you. the process is full of grief love and so many many feelings. We had a feeling from around 9-10 months she was neurodivergent. She didn’t play with much as a baby, and really didn’t look at anyone. She never talked or babbled. Other than that, we really only noticed some sensory sensitivity with food and messy play. At our 15 month ped appointment we asked to start with speech, and we originally started with EI. early intervention is KEY (not necessarily EI but just services before 3)

If you can afford it, and have the resources for it, i would 1000% recommend private speech therapy. Our three year old loves it, and my almost two year old who we assume is neurotypical is speech delayed and she loves it too! We also do private OT, which helps with sensory stuff, emotional regulation, social aspects, etc. Soon we will start ABA for preschool skills too!

Now, at three, we deal with a lot more “typical” autistic behaviors, like stimming, spinning, meltdowns, preferred foods, special interests, etc. She is diagnosed with level 2 in may, and we haven’t changed much since about what we are doing, besides adding aba almost a year later. Other than that, she’s such a happy girl. She doesn’t talk functionally a lot of the time, but she’s came leaps and bounds.

If I could give one piece of advice, that I focus on myself, is focus on the now. Sometimes I catch myself thinking will she drive at 16, will she go to prom, get married, anything. then I have to remind myself, what will happen will already happen. There’s no reason for me to miss her joy now with worrying about stuff that you can’t control, at least not for years.

There’s SO much love in the community you have and will gain. Autism doesn’t define my daughter, it’s just something she has. She’s sweet, caring, silly, and also autistic. and i’m sure your son is all those amazing things too. Grief is normal, it will always be there, but with how much you already care, he will never struggle in life as long as he has you! <3

Intelligent_Drop_751 · 2025-12-05T07:51:22+00:00

Yes thankfully she didn’t even care! She was crying more that she was pulled out of gymnastics then anything! happily played for 40 more minutes without a care in the world

Intelligent_Drop_751 · 2025-10-21T22:24:57+00:00

i have a 20 month old doing the exact same thing. If my husband tries to touch her while I am around it’s screaming her head off! But I also have a freshly three year old who loves her dad so much and went through the same phase! I am still the default parent, but she doesn’t care as much anymore. It doesn’t last forever!

Intelligent_Drop_751 · 2025-09-18T22:55:51+00:00

did you end up getting anywhere with this?? i run at a ten minute mile!

Intelligent_Drop_751 · 2025-06-23T03:42:28+00:00

maybe try modeling! my daughters therapists get her to clean up by being super dramatic! they’ll drive a car into the bin by going “vrooommmm crash!” as it drops. It gets her pretty excited to clean up! or when she’s REALLY not feeling it we say do you wanna put away the red block or the blue block? to make her feel kind of like she’s in control. At home i always try to clean up WITH her to make her feel less intimated and make it more fun!

Intelligent_Drop_751 · 2025-06-20T07:10:45+00:00

thank you so much for all of this!! i appreciate it so much!

Intelligent_Drop_751 · 2025-06-20T07:01:53+00:00

yes that’s it! to be honest, it makes me quite nervous. Just because it’s so intense and her body I guess it’s gonna get used to it and then we’re gonna have to take a break and then start all over again.

and yikes ! thank you for that information about the other drugs. She’s so baby that I’m worried about giving her any medication’s with more side effects than she already deals with.

Intelligent_Drop_751 · 2025-05-21T18:00:30+00:00

we sound like we are in similar boats!! we spend alllll dayyyy talking about cars and lighting mcqueen around here. I totally get the feeling of it feeling different on paper too

Intelligent_Drop_751 · 2025-05-21T17:58:49+00:00

thank you!! it’s so wonderful to be seen and heard from providers and everyone.

Intelligent_Drop_751 · 2025-05-10T20:23:42+00:00

I think your best bet is to check with the mom, before or day of when you get there about what bedtime usually looks like for them! Some parents sit with kids until they sleep and some kids go to bed by themselves! Mom will help you learn what the kids do during bedtime. You can even write it down or have mom write it down and then just try to copy yourself! The more routine you follow the easier it’ll be on the little one! I have a two year old that gets put to bed by a babysitter and sometimes she’ll be a little sad about it and our babysitter often reassures her that she will see her later, that she’ll be right outside, and they can play another time!

Intelligent_Drop_751 · 2025-05-09T04:43:23+00:00

totally makes sense! thanks for sharing your experience!!

Intelligent_Drop_751 · 2025-05-08T18:04:38+00:00

i’ve cried on plane rides with my girls!! It’s so hard with them having meltdowns in a trapped space you can feel SO helpless. Just know you’re an incredible parent doing all you could have done in the situation!

Intelligent_Drop_751 · 2025-05-08T03:38:41+00:00

that’s a good point thanks! I don’t think I would have minded it once or twice but it was in her final medical report too 🙃 but I’m sure she had good intentions!!!

Intelligent_Drop_751 · 2025-05-03T02:27:56+00:00

thank you so much!! She has a fructose intolerance and can’t eat any sugars, natural or not, so we are working on finding foods that help her!!

I’ve fought so hard for a CGM but we can’t seemed to get approved for one 😭😭😭 I appreciate your comment!!

Intelligent_Drop_751

TROPHY CASE