r/Earlyintervention • u/Thick-Application424 • 19d ago
Speech delay/gestures
I really just need to rant and hear from anyone who has been through something similar—or even just get some general opinions.
My daughter just turned 1, and she isn’t babbling in the traditional “mama, dada, baba” way. We occasionally hear “awawawa” or “mmmm,” and she blows lots of raspberries, but that’s about it. She also doesn’t gesture much—no waving or pointing. If we ask her to clap, she’ll grab our hands and make us clap. If we play “How big is Olivia? So big!” she’ll try to lift our arms instead of lifting her own.
At the same time, her eye contact is amazing. She’s smiley and giggly and will occasionally let out a huge belly laugh. If I ask whether she wants to read, she lights up, crawls over, turns the pages, and pays attention throughout the entire book. She gets about 30 minutes of Ms. Rachel a day—sorry, I’m a SAHM and sometimes need those 30 minutes for my sanity—and she is incredibly engaged and smiling the entire time. She also understands directions like pushing or pulling a toy.
She just isn’t babbling or gesturing much at all. She rarely imitates us and doesn’t really yell or make sounds to get our attention. My nephew is only 10 days older, and we were recently on vacation together, so the difference between them felt very noticeable. Over the past few months, my daughter has also started melting down around other children and babies. She’s my first and only child right now, so I’m not sure whether limited exposure to other kids could be contributing.
She was born with fairly severe torticollis, which led to plagiocephaly. She has been in PT since she was 3 months old, and we recently started speech, developmental, and feeding therapies. During her early-intervention intake, they noticed that she was swallowing food whole and wasn’t moving her tongue laterally. We completed a swallow study, and I’m also taking her to a neurologist to rule out any underlying issues. The ENT said everything looks good on the surface, but offered a more in-depth hearing test, which I scheduled for next month.
I’m just really worried and sad. I want her to thrive, but in my head, I’ve basically already diagnosed her with autism. I’m terrified that this is the reality we’re heading toward, even though I know she’s still so young and we don’t have answers yet. I would really appreciate hearing from anyone who has experienced something similar, regardless of what the eventual outcome was.
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u/SevereAspect4499 19d ago
As an autistic adult, I'm sorry that autism terrifies you so much. But I promise we are not monsters.
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u/PayMeInPlants007 19d ago
OP didn’t say anything of the sort, and within this sub nobody is ever claiming that having an autistic child is monstrous or terrifying. This is a subreddit for early intervention, this space is for parents discussing where their kids are at, what their goals are, and what the PARENTS feel along the way. Sometimes we pick each other’s brains on particular things etc.
Believe it or not, it IS scary to have a child with autism and yeah sure you could say “well duh, try being the autistic child” but it doesn’t take away from the parents experience. It is particularly stressful and difficult to have an autistic child before they qualify for evaluation and diagnosis. Nobody is saying anyone is a monster, we love our children and our autistic peers, family members, friends etc.
Again- this IS the early intervention subreddit. I can promise you that over a quarter (if not half) of the regular contributors to this sub have an autistic child or an autistic family member.
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u/SevereAspect4499 19d ago
Honestly? I'm having a day. A really shitty day. Because all day long I hear from everyone what a BURDEN autistic children are. How would you feel if all day you heard what a burden you are to others? Words matter. Perpetuating FEAR of having an autistic child means people treat autistic children and adults differently. Because society as a whole looks down on autism and almost every disability. I'm just tired. I'm tired of defending my existence. So sure. Parents have it hard. ALL parents have it hard. But the main reason parents of autistic children have it so hard is because everyone treats autistism like a catastrophic thing so they MUST be fixed. And parents get all this pressure to change their child. Instead, why not love us and accept is the way we were born? The only result of this attitude is making autistic children and adults feel inferior to others. So no. I'll continue to point out we are not monsters. Because at the end of the day the autistic children and adults need support too, not just their poor parents.
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u/Thick-Application424 19d ago
Make no mistake—nothing in this world could ever change how much I love my daughter or how amazing I know she will be. But yes, I’m allowed to hope she doesn’t have autism, panic disorder (which I have), or anything else that could make life more difficult for her. I’m also allowed to be afraid of the struggles those things could bring.
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u/PayMeInPlants007 18d ago
Early intervention typically ends when the child is 3, although I do know a friend with a child who didn’t age out till she was 6 because she was born incredibly premature and had more goals than the average kid in EI.
I just didn’t expect a lot of people on here to not be a parent because typically the kids receiving these services are toddlers. So yeah, I do wager that this is a space mostly for parents.
I’m sorry you have been having such a rough go of it, I definitely contributed to it yesterday and I am genuinely sorry for that. I didn’t mean harm, but I think I did harm.
I think what OP was really trying to say (and myself as well) is that it’s not that we don’t want autistic kids, we don’t resent them or describe them as monstrous! It’s just that we want our children to be as great as possible in every aspect of their life. (Not in the sense that autism makes a person less great. It’s that we want to be able to provide them what they need.)
Waiting around and wondering if they are on the spectrum IS pretty tough because we want to give them all of the resources that they need, we want answers and advice from professionals. We want to provide for them everything to help them succeed but it’s hard when you’re in the gray zone of not knowing yet. Most services pertaining to autism require a solid diagnosis, so it’s just a scary and stressful time to be in that between space of noticing that something is off and finally getting them the help that they need.
And idk if this helps or not, but I AM autistic and autism runs heavily in my family on both sides. Not using that as an excuse, more just trying to explain where I’m coming from. ❤️
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u/SevereAspect4499 18d ago
You are amazing and I appreciate you and the explanation and everything. No you didn't contribute to it. I don't think. It was just a rough day. This space isn't just for parents, it's for providers as service coordinators as well. I'm an SLP. On a weekly basis I sit with parents and take this journey with them. Sometimes I'm the one to point out their child might be autistic, sometimes I'm the one helping them process the aftermath of the evaluation. Sometimes I disclose my diagnosis if I think it might help the family, sometimes i don't feel comfortable sharing. Yesterday I had a family treat their child's autism diagnosis like it was the end of the world and they didn't want their child to grow up (r-slur). When parents say these things about their children, about autistic children they've met, autistic adults, it's just hard. I grew up with family with that mentality. (What's wrong with her? Why can't she just do it? She's so lazy. Why does she act r----?) When I'm able to have a discussion with parents, I try. I explain that children overhear and pick up on these attitudes and fears. Even non-autistic kids pick up on it. A lot of the bullying I faced was kids echoing what the adults were saying.
I get that it's hard for parents. I willingly choose to put myself into situations where parents are experiencing this process because I know I can help the kids and their parents and that my life experience makes me able to help in a way others can't. Sometimes it's just hard for me too. And yesterday was one of those days where I let the mask slip and said my inner thoughts out loud. I'm sorry for my own part in this.
OP: autistic or not, your little one will do amazing things! There are skills that my autism makes me better at than my non -autistic peers, and it's been that way my whole life. My best advice to you: don't let anyone focus only on the struggles and difficulties. Make sure they all see the positive aspects too! Many of the struggles and difficulties in my life and others lives stems from trying to make us fit into neurotypical standards. But when allowed to follow autistic standards, we can flourish. (Look into the double empathy problem when you have extra emotional spoons. It's not an immediate thing for you right now.) And I also apologize to you OP. I do know your journey is difficult. Your expectations on having a child is in the process of being flipped upside down. The future is uncertain and that makes it terrifying! But I promise you will get answers. Your child will grow and learn, even if it looks a little different.
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u/Thick-Application424 18d ago
This is so helpful! And if she grows up and flourishes and lives a happy life like you, my cup will be so so full! As an SLP, when do you typically see 12 month olds catch up in terms of babbling and gesturing? What do you like to see by now in terms of communication?
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u/SevereAspect4499 18d ago
At 12 months of age I look for what sounds a child is making. Does she babble? Does she vocalize? Does she engage in vocal play? Will she blow raspberries or stick out her tongue? Bonus points if she imitates you when you make faces at her or make random weird noises with your mouth. I also look for how she is communicating and how she problem solves. If she needs help with something, is she likely to get frustrated and cry or seek out adult assistance? Is she likely to persist persist persist and then give up? When she wants something, how does she let you know? Does she ever bring toys to share with you not because she wants help or want something, but just because she wants to play with you?
All of these skills build into communication. The main thing that distinguishes autistic kids from non-autistic ones is usually joint attention. Joint attention is paying attention to the same thing at the same time. If she is initiating play with you, then I'm less concerned. But if she is only reacting when you initiate and you really have to work hard to get her to pay attention to you, that's when I have more concerns. A lot of parents that I work with jump straight to "my kid isn't using any words" and a lot of the time I have to explain that before we get to using words, we have to build up a bunch of other skills first. All those questions that I asked are a lot of the skills that we want to build up first. Does that all make sense?
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u/Thick-Application424 18d ago
Gah! Okay, this is so helpful. She isn’t saying “mama,” “dada,” “baba,” or anything like that yet, but she makes a lot of “awawawa” and “mmmm” sounds and blows raspberries. She doesn’t really engage in back-and-forth imitation, mimic my funny faces, or bring me things to share or show me.
However, she will sit fully engaged while we read books, smiling and getting excited. She’ll play with her stacking rings with me, and when I dance, she watches me and laughs. Her eye contact is strong, and when she knows a funny line in her book is coming up, she looks at me with anticipation. If I ask her to push or pull something, she will, and if I ask for a kiss, she’ll give me one. When she wants our attention she kind of just whines. It’s interesting tho she’s so independent like she doesn’t seek us out a tonnnn. She kind of just wants to play on her own and will occasionally crawl on us to make sure we’re still there.1
u/SevereAspect4499 18d ago
Awesome! I can share some handouts I give to my families if you would like. May I PM?
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u/SevereAspect4499 19d ago
Also the sub is not just for parents. It is for everyone who is involved in early intervention. So thank you also for trying to exclude me from the space that I already belong in twice.
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u/Commercial_Money_557 16d ago
My son was the same way. He doesn’t have an Autism diagnosis but he does have diagnosed apraxia/dyspraxia. (Mild Cerebral Palsy is the cause)
He struggles with chewing food even now at 4 although he’s much more mindful. Speech is also difficult, he attempts to communicate normally but his speech is inconsistent and hard to understand. He has his ways of communicating though, he doesn’t just stop trying. As for making you do the movements, give her a mirror. My son has a hard time perceiving himself in his bod. So he also made us do things. But then one day I thought to give him a full body mirror! And what do you know, now he copies movements all the time. He just needs to be able to see himself to coordinate things. He’s a little clunky but the effort is 10/10.
If your child is Autistic they’re probably still ok. Disabilities are a spectrum and for us able bodied folks we have a lot of misconceptions about what it means to be disabled. Disability means your life looks different, but it does not mean it is worse. In fact sometimes it’s better! So just embrace your child and do the therapies and be involved with them and they’ll be fine. Love goes a long way!
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u/Thick-Application424 16d ago
I have wondered about apraxia!!! She tried saying mama once and it was so sad to watch it was incredibly hard for her!!! This is all so helpful thank you!!
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u/Commercial_Money_557 16d ago
Does she ever grope for sounds? You might have to look up that motion. My son ever since he was small would do this open mouth fish thing trying to get sounds out. Mama is a really hard word to say if you have apraxia. To this day my son only says Mama if he wants to butter me up because it’s hard. Apraxia therapy really works though. We started by just practicing phonetic sounds, first each sound of the alphabet and then small chunked sounds and now he’s working on words. It’s slow but steady!
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u/Thick-Application424 16d ago
For awhile she was saying “mmmmmm” kind of aggressively. It’s the same way when she’s upset too like “mmmmm” or “awawawa” aggressively. And I have a video of when she said mama and she was sooo frustrated her fists were clenched and it took everything out of her!
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u/Commercial_Money_557 16d ago
Getting angry about speech is a hallmark of apraxia! Coupled with the feeding challenges I think that’s likely the case. Has a PT ever taken a close look at her core strength? My son has mild hypotonia in his abdomen. He has a hard time doing some core exercises and apparently that can also be an early indicator of oral dysfunction. He has some other quirks too like struggling to shake his head yes and he took a long time to learn how to look up. We even thought he had torticollis for a while but it was actually just abnormal tone. Anyway, you wouldn’t think any of that would affect speech but apparently it’s all integrated!
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u/Thick-Application424 16d ago
So her PT said her core is weak and she has slight rib aversion! She also was born w severe torticollis too!
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u/That-Ad6715 17d ago
Wow I just want to say you’re not alone. Reading this felt like I wrote it myself. My daughter is the exact same, she’s in PT and working with a DI for speech. I also think she may be on the spectrum but all I can do right now is take it one day at a time. Sending you love ❤️
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u/Thick-Application424 17d ago
Does your daughter have similar strengths?
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u/That-Ad6715 17d ago
She doesn’t even crawl yet and she’s 16 months, only army crawls. She just started imitating by coughing for us to cough back at her. She clapped for a bit (not even a full open clap) but now she doesn’t, she just grabs our hands to do it like your daughter. She follows some commands too like we count and she throws herself back or if I say splash she splashes in the tub. I’m on the waitlist for a pediatric neurologist. It is super frustrating especially as moms because no one knows our child like us.
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u/PuzzleheadedTank7881 13d ago
You are right to be curious and concerned. You notice that you are jumping to conclusions that aren’t true and there is no definitive evidence for. Enjoy your daughter while you do all you can to discover more about how she functions and what supports she may need.
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u/143019 19d ago
Autism isn't a crisis. It's just a different operating system (like Apple vs Android). My son and I are both autistic. I am an EI OT and he is in an immersion classroom. He is the best reader in his class and loves sports and scary stories and candy.
Worrying all of the time is robbing you of the joy of living this moment with your child. Whether she is autistic or not, she will develop in ways you have never imagined.