Hi all- I will start by saying I know this is very long & understand if many cannot read this post.
My spouse (35M) and I (37F) currently have two daughters, Laylah (4) and Lilly (3). We live in Louisiana. I have been a SAHM since Laylah was born, and their dad works a demanding but somewhat flexible job in fleet management.
Laylah finally received an official Austim Spectrum Disorder disangosis July 15th 2026.
I am also currently 10 weeks pregnant (relevant later).
To give background on Laylah- at a year and a few months, I started to notice Laylah was regressing. Not saying mama or Dada anymore, not trying to interact or do things independently (feed herself, play patty cake, etc) - just a lot of little changes one would notice. Her Pediatrician said she would assess at her 18mo checkup, but all she handed me was a referral to speech therapy & said she didn't see anything wrong.
Of course, it only became more clear: zero talking- no attempts, mostly silent, didn't care to interact. Stopped trying to use spoons/forks & wanted to be fed, still wanted to drink from only sippy cups, no potty training. Very sensative to overstimulating situations/becomes overstimulated easily, and has done things like make a yelling sound & clap her hands once really loud, to now she just covers her ears a lot & keeps them covered, and may cry/give a yell. In the car, she tends to melt down and slams her head repeatedly into the carseat while screaming/crying/covering ears and kicking wildly. She cannot handle her hair or teeth being brushed, nor her nails clipped, although now she doesnt fight it as bad, but still whines while trying to pull away.
She does not have that self awareness- like she will walk up to a stranger and start touching their shopping cart, or looks into a stroller to see a baby, will start looking into people's stuff/bags at Dr appointments.
She still has this habit of, for example: taking fruit cups and arranging them in a line, or putting her blocks together by matching colors. Currently, in the last few months, she started her meltdowns of being told no, and her yelling then trying to kick into the air, hit me or litttle sister, drop to the ground screaming, etc. Unfortunately, it took 3 different peds. that went no where, until a nurse at a WIC office listened to me and observed her, and she gave me the name & number of her (10y/o) autisic son's pediatrician.
In one visit, we were heard, put in for multiple referrals- speech therapy, OT, austism assessment, and a few others. They do everything within their hospital which makes things so much easier.
Also, I do want to say, since her sister turned 2, Laylah has started talking here and there, can say her ABCs, count to 10, knows her basic colors when she sees them, is interacting more, attempting to feed herself on her own, and sings along to little songs, and Bluey/Mickey. For some reason, hearing Twinkle, Twinkle off my phone makes her emotional & cry.
If she sees me getting cereal, she goes to the fridge and grabs the milk. Or making food, she goes & grabs her cutlery or brings me a hand mitten (She has always been very smart, and only has to watch something be done once and learn how to do it herself, which can be good or bad depending-except potty training) .
She does tend to randonly count over & over or say ABCS, etc. Loves to ride 4 wheeler with her dad and loves to swim and play with her 6 & 8 y/o female cousins. She has been picky with eating last 4 months, especially meats/chicken, prob has iron deficiency which she is on vitamins until bloodwork comes back.
We FINALLY at 4 years old, had her assessment July 15th, received the official diagnosis from a team of nurses, doctors, and a psychologist who spent time interacting and observing her.
OK so I think that's more than enough background to get an understanding of Laylah. Now my questions/advice:
We have been told that certain referrals, like occupational therapy for instance, are being put in and we will receive a call. I did get a call the Fri of the same week to start speech therapy this Thurs the 23rd, weekly. I was highly recommend to place her in ABA therapy, and after looking into what it is, I realized that is exactly what she needs. I have called some places in my area and am awaiting a few call backs.
Being 10 weeks pregnant (was not planned but that's OK), I am overwhelmed at just the thought of it all. Their dad has just been told that from mid/end August- mid October they need him(&others) to travel to different states to work on a ton of vehicles (close to 1K).I also will have one OB appt every 4 weeks to start- but am also going to start seeing Maternal Fetal Medicine at 16 weeks due to high risk pregnancies, and they usually see you more often.
Anyway,
I have seen a few posts on here of parents with children in ABA, speech, and at least one more therapy weekly.
How do the parents here who have multiple therapies for their child juggle this? I know ABA and how many days/hours they go per week depends on their needs. Im not sure if ABA has to have her for a day or two then determine how often she should be going. I assume this something that I drop her off on days she would be going?
Speech therapy is at the same hospital as her Pediatrician, so thats simple & not too far, and about 30-45 min sessions. The other therapies I am on a wait list, and I have to take her for a genetic testing and ENT appointment once they call me to schedule, but that's a one time thing.
I am trying to picture handling this, especially with it being so many different things per week, on top of her little sister, who cannot go into headstart this year (supposedly because "they were full by the time her application was processed" for our area) and eventually a newborn. I want Laylah to have all that she needs, especially since it took 3 years of running around and not being taken seriously to finally get a official diagnosis that IMO should have happened around age 2.
Also, I know this is something that I will have to ask her psychologist, but I see many patents say what level their child is, such as a 1, 2, or 3. I dont remember being told this, nor am I sure they can determine yet. I do known at the assessment, I asked the psych. that even though she sleeps through the night without issue, what does she think of a Cubby Bed (for those that may be familiar) and she responded with, "those are more for children with higher needs." So im not sure what that meant for her exactly- if she will be able to be independent in the future, or may be living with us long term/life.
Again. Sorry this post is so long. My parents speak mostly Arabic, and do not live in the same state, so they do not understand this fully, and are not here to help. Spouse's family- siblings are addicts and dont have their own kids, his step sister(18) was the only one who was willing to babysit Laylah, and she's leaving for college in a month, an hour away (they live across street from us), his niece that also lives with his mom (she has custody from his younger sister), is 13 & going through her own behavior problems, and finally his Mom works and barely keeps Laylah on weekends, maybe once every month for one day/night because she is "getting older" and Laylah is very "active/difficult to keep up with." She does have his brothers kids (2 cousins mentioned earlier) over all the time, on any days/weeks off school, and most weekends since birth, but they are "easier to watch." I also dont get along with his mom but keep it civil. So basically will be juggling this on my/our own.
Please- any and every advice/tips/knowledge you can share with me from personal experience I would appreciate so much. I tend to be over detailed and apologize. But waiting on a diagnoses vs finally getting one and having all these different plans of actions is very overwhelming, esp withvno one to talk to, and I just feel like some personal stories, advice, how you handle things, no sugar coating, would help me feel more grounded compared to just knowing what's in front of me without anything but Dr's references.
Thank you so so much if you read this and are willing to give any tips, routines, handling multiple therapies and what that really looks like, and how those things have helped. Any questions that may help, please feel free to ask.
🙏 Thank you and God Bless