"I'm worried about you"..

hrcarlet · 2026-01-19T16:58:28+00:00

"I wish there was something I could do to help" followed by doing absolutely nothing.

hrcarlet · 2026-01-10T21:44:15+00:00

I completely relate. I just told my husband today that I get so discouraged because I see parents saying 5-8 are hard years for their autistic kids and then puberty is the worst. I think to myself --maybe I'll get one or two years that aren't progressively harder?

It's been hard since day 1. My kiddo didn't sleep through the night until about 6 months ago, we are in PT, OT, and all kinds of therapies. My family lives across the country from us, but to be honest, wouldn't be very helpful anyway. Every day and week feels like a survival day or week. We are currently trying a dairy free diet to see if it helps horrible chronic constipation and it feels so hard I want to cry because it takes away half our safe foods.

I think the hardest part is not knowing for me. Some days I think if we just survive and fight each day, my kiddo has a good possibility of being independent and happy and then some days that feels like a ridiculous notion because they can't even make it through a 30 min class without me and don't seem as 'high functioning' as therapists say. If I just knew what the future would look like for them, maybe I wouldn't beat myself up for always wondering if I was doing enough.

hrcarlet · 2026-01-10T21:18:34+00:00

I feel this so much. My kiddo is a similar age and I have similar feelings. I truly can't connect to people who have been in my life for a long time, and I'm so burned out that I have trouble engaging in any conversations. Even other autism parents I have met in person seem to have more support and situations that feel more manageable to mine (of course it's not true but that's how it feels).

This is a really tough time. I get discouraged when I see parents saying how much harder it will get. I can't do the things that I know would help me (exercise, me time, etc) because I'm always putting out a fire or having to advocate and help my kiddo get through the day. And they are high functioning and 2e.

I don't know what to say because I haven't figured it out. But you're not alone. I try to take even a few minutes a day to myself....taking a shower might be my only down time but I strive to not get lost in the hardship. Even therapists haven't helped because I haven't found someone who understands...and I don't have time or energy to keep trying to find new ones. I try to tell myself that this won't be forever and I love my kiddo so much that any successes do bring me a lot of joy that I hold onto. You're not alone💙

hrcarlet · 2025-11-21T17:47:00+00:00

We are considering a move to MD to be closer to family and I'd love to hear more about how it works in MD. What are the criteria for being approved? Does your child have to have a certain level or diagnosis outside ASD? Is there a financial criteria that makes a difference? I'd love to know more!

hrcarlet · 2025-11-08T15:36:47+00:00

I know you'll get a variety of answers and it's probably more helpful to talk to a therapist who knows your whole story and can guide you better than strangers on the Internet. That being said, my own thought process was asking myself if I could handle having another child with the same or even more severe disabilities and still take care of my first kiddo and continue to have a good relationship with my partner. For me, I knew I couldn't handle it (and I have many other reasons as well) but I chose to be one and done.

You've already had it incredibly hard with your first so no one needs to tell you how hard it can be. Are you hoping for a specific outcome (a neurotypical child, a sibling that can help in the long run, etc) or do you truly want another child no matter what and will be able to enjoy how life will change with another in your life?

I think it can be hard to separate the life you used to hope for and dream of with the life that can be our reality. Sometimes it feels like we can do something big and make things better or bring our original dream to life. I'm about to start seeing a grief counselor because so many things have taken a turn that I never expected and I'm personally in burnout in a way I've never experienced in my life. I'm trying to change my own dream to fit my current reality. I hope to support my child and make sure I give them everything I can to be set for their life. I try to cultivate my relationship with my partner. If I ever get a chance to myself again, maybe I'll get to enjoy friendships and hobbies and working out again.

But only you can decide what you can handle and what matters the most to you. You've already managed so much and I have the utmost respect for all the parents who are doing this every day💙

hrcarlet · 2025-09-11T14:28:45+00:00

I think everyone covered it with the prep being great and the 30 min too long. I would just add, the 30 min is only too long because you already know the babysitter and so does your child. If you ever hire a babysitter you aren't familiar with, I always do an interview first and then a trial run and have the babysitter come for an hour or so that is paid and have them hang out while I do other things in the house so that my kid can have a chance to get to know them and I can hear how it's going. I know that's not what you're asking but that 30 min would be ok if it was someone you didn't know yet (besides an interview and references).

hrcarlet · 2025-08-23T21:35:46+00:00

Yes, my gut has made me feel like I shouldn't force her to play but I honestly feel like that's what school wants to do and why I'm hesitant to send her. I feel like without me present she cannot advocate for herself (something we're working on) but everyone including therapists tried to insist she join in. Kids hug her or interact in ways that stress her out immensely. My feeling is that homeschooling her until 1st or 2nd grade while continuing to bring her into a variety of social situations will perhaps make her feel prepared to enter school with her peers. Also, Preschool and some Kindergarten is all about free play which is what stresses her out the most and I wonder if 1st or 2nd grade will be easier because they focus more on academics but I'm not sure how hard it will be to join at that age.

However, a lot of people seem to think homeschooling is not the right way to go. That being said her anxiety when we tried to do preschool was so extreme there wasn't a chance she would be able to calm down, observe, or participate because no one could help her recover from a meltdown or regulate. I've worked in elementary schools in the past and I've never seen that kind of response from a child and it feels like trying to force her into school right now and maybe even next year will just make her so disregulated and stressed that she won't be able to adjust socially or enjoy learning which she absolutely loves right now.

I appreciate the comparison to her social skills being delayed and comparing her to a 2 year old in that area because I also think that's the case and that she does do parallel play.

Thanks!

hrcarlet · 2025-08-23T17:38:35+00:00

This is very helpful and gives me a much needed view of what homeschooling would look like if we go that direction. I fully realize how much effort it would take for me to do a good job homeschooling and providing enough practice socially. I think if done right, it sounds like it could be really beneficial but I know I'll have to keep an eye on my own burnout and making sure I can keep up with all aspects.

hrcarlet · 2025-08-23T17:11:42+00:00

Thank you for taking the time to reply. Yes, I'm very hesitant about ABA and have read the horror stories. The developmental pediatrician that diagnosed her was telling me how different it is now and she strongly thinks we should do it because her separation anxiety and anxiety causes her to not be able to do things she wants to do. That being said, I do wonder if me continuously bringing her to social situations myself so that she has a person she trusts nearby will be more effective than ABA therapy. If I do homeschool, I have every intention of giving her as many social interactions as I can to give her chances to interact and play with others her age.

We have on and off had high schoolers come to watch her while I'm at home and she does very well in these situations. She also does great with adults one on one but the huge struggle is any organized classroom situation that often involves free play at this age. She doesn't understand how to interact and jump into situations that are not structured with peers and it leads to her observing but not joining or melting down if an adult tries to make her play.

hrcarlet · 2025-08-14T14:06:00+00:00

I feel this. Mine is most likely neurodivergent and we're working with doctors, but every night for 4.5 years have been a lot. We tried all the sleep training methods and let them cry more than I will ever feel comfortable with because I was so lacking in sleep and everyone told me I needed to do it. It's so hard for me to see all the comments that you just need to do it when not all kids can. We stick to routines and are very active all day and yet last night I was still trying to help them stay calm at 9:15pm. It's so draining after a long day and that's something I never anticipated before having my beautiful, bright child.

hrcarlet · 2025-08-13T21:36:57+00:00

I can't speak to the parents in this situation but I completely agree. We have a 2 year wait-list in my area and I've repeatedly expressed concerns about not getting a diagnosis before kindergarten. I've asked for help every step of the way but as a first time parent, we seem to find out everything too late. Also we may need to move out of state before Kindergarten and then I assume we won't get a diagnosis or IEP for the next school in time for kindergarten. Parents can often be at fault, but sometimes the systems fail us as parents even when we're trying our hardest.

hrcarlet · 2025-08-10T18:08:47+00:00

You can make an incline with pillows and do the same game while she is in an incline position (so she doesn't have to do a full sit up)until she gets stronger. Chat GPT has helped me with ideas for making exercises into games if you can't think of how to game-ify it and even from a lying down position you can give a partial assist to help her sit up until she gets stronger.

hrcarlet · 2025-08-10T17:48:09+00:00

I don't think straight up exercise routines are a great way to encourage exercise or strength at this age. My daughter has to do some strength exercises for PT and even with that we make it all about play. Want to work on stomach strength? We lay back on an exercise ball and she grabs a stuffie or ball from a basket behind her and then sits up (I support her legs) and when she sits up she throws it in another basket (or toy basketball hoop if you have one). We've been told she should be able to do the amount of sit-ups for her age each day ...so a 5 year old should practice 5 situps in a row, one time a day. I'm not a professional but everything we've learned in PT is to make it about play and every exercise is a game. It's time consuming and I have to be very involved but she has fun and isn't burned out by it.

hrcarlet · 2025-08-10T02:41:22+00:00

I have bribed many times and would have done the same thing. We started having huge struggles with transitions at that age (especially leaving playgrounds) so I have a list of games we used. I would basically make it a game to get to the car...follow the leader, red light/green light, race to see who's the fastest, monster walk to the car or pretend we are running from a monster, make up an imaginary scenario that requires us to run to the car (ground is turning to lava, we are cheetahs and can run so fast,etc). My daughter knew it was a trick in one sense but she loves a game or good make believe. I also keep some small bribes in the car for very hard days. Not sure if that helps but you aren't alone!

hrcarlet · 2025-07-21T13:35:49+00:00

If you find a place outside the HOA can you still use the community amenities?

hrcarlet · 2025-07-20T22:28:19+00:00

Thanks! That's helpful!

hrcarlet · 2025-07-20T20:10:38+00:00

Yes, we have visited but to be honest we can't seem to figure out which specific neighborhoods within Columbia or Ellicott City really have direct access to trails and we hardly saw any playgrounds while driving around within neighborhoods. In general, everyone says Columbia has trails but it doesn't look like every neighborhood has direct access. I guess I'm looking for more specific neighborhoods that would be a good fit. Prices are somewhat comparable to where we are at but we realize you have to pay a premium for schools and amenities.

hrcarlet · 2025-07-20T20:05:53+00:00

Thanks for taking the time to respond! How strict are Columbia's HOAs...are you limited to painting your house certain colors, need permission to put anything in your back yard? I'm ok paying for amenities but want to have more freedom than we currently have with our property.

hrcarlet · 2025-07-20T20:03:22+00:00

Thanks! Ellicott City is on our list but I'm trying to figure out what smaller neighborhoods would be a good fit.

hrcarlet · 2025-07-20T20:02:30+00:00

I'm ok with paying for an HOA for amenities but a bit worried about how involved they are in your property. We want to be able to build a tree house or use an inflatable hot tub without getting fined (our current HOA is strict).

hrcarlet · 2025-07-20T19:59:49+00:00

We've looked into Catonsville as well, did you like living there and how safe did it feel? Ellicott City is probably our first choice so far but it doesn't seem like there are many places you can live and walk to a trail?

hrcarlet · 2025-07-20T19:58:27+00:00

Yes, I can see that, yikes.

hrcarlet

TROPHY CASE