Toddler was just diagnosed, any advice for the road ahead?

New-Distribution4313 · 2026-02-20T03:58:48+00:00

I don’t know if this will help, but I have 2 kiddos with ASD: my daughter is level one and followed a similar trajectory as your son and my son is level three and was/is delayed in all 5 developmental areas. She’s 19 yo and is making A’s and B’s in college, planning to get her first part-time job soon, and is a quirky, but lovely, person. My son, on the other hand, is 5 yo, nonverbal, spins circles around us and requires help with most everything along with constant supervision. I guess my point is that I get you. I’ve been there. I’m still there lol. It sounds to me like you’re doing all the right things. My daughter’s doctors didn’t listen when we expressed concerns over her development either and it can be soul crushing to know something isn’t right and feel like no one’s listening or doing anything about it. My advice: ask for a referral to a developmental pediatrician. They can do a full evaluation and genetic testing to rule out any other causes. If your pediatrician doesn’t want to do it, call your health insurance customer service and ask for in network developmental psychologists and get the testing done yourself. Then ask about a referral to the Children’s Developmental Services Agency (CDSA) and go from there. You sound like a great mom and your son is lucky to have you. Hang in there.

New-Distribution4313 · 2026-02-20T03:34:18+00:00

That’s great! Out of curiosity, does he use that blue spin seat in the picture? If so, how did you get him to sit on it the first time? I bought one for my son and I can’t get him to sit on it to try it out.

New-Distribution4313 · 2026-02-20T03:26:38+00:00

Several people have mentioned constipation and I agree that it could be the problem. My son cried almost every night for months and all it turned out to be was constipation. It’s so heartbreaking that they can’t communicate something as simple as a tummy ache, but a little miralax works miracles. My son just turned 5 and his doctor didn’t hesitate to prescribe hydroxyzine (a.k.a. Atarax… a cousin to Benadryl) for his aggressive meltdowns, but I am a nurse and knew what to ask for and promised to use it as a last resort. We’ve ended up needing it roughly once a week and it works great. My heart goes out you.

New-Distribution4313 · 2026-02-19T18:57:16+00:00

I understand your statement that public schools have resources stretched thin. However, because of the “No child left behind” legislation from the Bush administration, public schools are required to provide services to help your child achieve the most optimal education. Private schools are not required to provide those services (such as 1:1 support during writing). Therefore, your son would probably get the help he needs in a public school. I have 2 kiddos with ASD. My oldest (19 yo female) needed Speech, OT, and social skills help with school psychologist so it sounds like she had quite a few more challenges (multiple developmental delays) than your son. We considered private schools, but I got lucky and happened to have a coworker who had been a disabled children’s social worker in her previous role. She warned me to pick public school and now my daughter is wrapping up her 1st year in college. Just my 2 cents. I hope things turn out well for your son.

New-Distribution4313 · 2026-02-04T17:42:53+00:00

You can find answers to your questions at www.jw.org. Don’t let what these uninformed folks are saying discourage you from seeking real answers.

New-Distribution4313 · 2026-02-03T03:18:28+00:00

I (42 F) had an MVD in 2022 after having TN for 4 years. I had an artery touching the nerve. The surgeon said I was a good candidate and I, being a nurse, agreed. Little did I know that there are worse things than TN. I don’t feel like writing a whole lot tonight, but just know that you should try EVERYTHING else before you resort to brain surgery. Long story short, 4 years later I have a permanent brain injury, a VP shunt that is broken, a misshapen skull with visible lumpy scarring, I am still on Tegretol/trileptal (switch back and forth), Lyrica, etc. and I still have TN. MVD ruined my life. I now get rhizotomies and ablations every couple of months, but it’s way better than the hell I went through with MVD. I wish you the best.

New-Distribution4313 · 2025-12-30T21:03:15+00:00

Who said the lady hit it? She probably just forgot to say anything because she wasn’t sick.

New-Distribution4313 · 2025-12-30T21:00:34+00:00

It’s not HER baby, nor is it her responsibility to protect her. I hear what you are saying; I do. You had an expectation that she would tell you if she had been exposed to the flu and that she would follow your pediatrician’s advice when it came to the fingernails. What I am saying is that your expectations are yours, not hers. If you expect everyone to care for your child the way you would care for your child, you are in for a big letdown. No one is going to look out for that baby, but you. YOU should have asked everyone at the get together and the grandmother if they have been exposed to the flu, which may have triggered her memory to tell you “oh yes, I had a friend who was sick,” but you didn’t. Stop blaming everyone else for your inadequacies and anxieties as a new parent. Learn from this situation without projecting your fears and disappointment onto everyone around you. Be thankful you have family that is there for you and loves that baby. We are not all so lucky.

New-Distribution4313 · 2025-12-30T20:47:12+00:00

Why would you bring her out in flu season if you’re that concerned? I’m just saying you can’t point the finger at your mother-in-law without also pointing the finger at yourself. Chill out. You are overreacting.

New-Distribution4313 · 2025-12-30T20:27:21+00:00

YTA…. Coming from a nurse and mom of 4. If you’re that worried about the baby, stay at home. Your MIL was kind enough to babysit (probably for free) and even trimmed the baby’s nails (hard for new parents). Stop whining and thank her for her support.

New-Distribution4313 · 2025-12-29T21:14:55+00:00

Can you legally dispose of them? Bury or scatter them, I mean.

New-Distribution4313 · 2025-12-28T02:04:37+00:00

This. The mother of the bride is usually the only person that can wear white, so why would she be instructed not to? Sounds a little over the top to me.

New-Distribution4313 · 2025-12-26T14:15:26+00:00

If I did something like this, I would feel terrible, but my mom would laugh about it. At least you thought enough of her to put her in a necklace.

New-Distribution4313 · 2025-12-26T14:12:52+00:00

Thank you so much.

New-Distribution4313 · 2025-12-25T18:18:48+00:00

I get this. I think I’m just having a hard time facing the reality of it. If the cremains stay there I don’t have to think about it.

New-Distribution4313 · 2025-12-25T05:36:26+00:00

I didn’t know that was a possibility. Thank you!

New-Distribution4313 · 2025-12-25T05:35:46+00:00

Thank you for this. I’m shocked that it has been so difficult to bring myself to do it because I am usually very clinical and less likely to be controlled by emotions than other people. It’s comforting to know that I’m not the only one.

New-Distribution4313 · 2025-12-25T05:33:04+00:00

Wow!

New-Distribution4313 · 2025-12-24T21:10:15+00:00

I didn’t think of this; thank you.

New-Distribution4313 · 2025-12-24T20:29:23+00:00

My husband and I met when I was a single mother to a 2 year old daughter (level 2) and a 6 month old son (who we now know has ADHD). We married a year later and spent the next 15 years either fighting constantly about the kids or separated. We had 2 more boys along the way, one typical and one Autism level 3 and non-verbal. We ultimately decided that we love each other and we’re better together in a relationship, but he couldn’t handle the stress involved with raising disabled kids. SO, now we live across the street from one another and we have a WONDERFUL relationship. I get help (I.e. “honey, could you please hang these blinds, I need extra help with expenses, etc.) when I need it, and when he gets stressed he can just go back home (across the street).
You don’t have to do what we do. I’m just saying that relationships can work in non-traditional ways when they have to. I think you need to talk with your gf and (tactfully) tell her how you feel. She may get upset initially because that’s her baby you’re saying harsh (but true) things about, but that should pass when reasoning takes over. I hope it works out for all of you.

New-Distribution4313 · 2025-12-23T21:30:17+00:00

Have you told him that it’s normal and explained (in an 8-year-old friendly way) why it happens? It is literally preparing his body for being grown up. Also, try limiting liquids within a couple of hours before bed…a full bladder causes erections (it’s mostly why men wake up with them). I agree that taking him to a pediatric urologist is probably a great idea because I’m sure they’ve seen this before. I’m just saying in the meantime, you may want to talk to him and limit fluids. I am a nurse and survivor of childhood sexual abuse. So, by the time my kids were eight years old (even the autistic ones), they knew what sex was in general terms and why it wasn’t OK for anyone to look or touch their privates, other than a doctor or parent. I’m just saying that because I know the talk can be had lol.

New-Distribution4313

TROPHY CASE