A few months ago, at about 17 months of age, Aerin came down with a bad cold. Just a few days after recovery, she developed roseola…and a week after that, she got an ear infection.
All in all, she was sick for the majority of a month.
As one might expect, she lost a ton of weight (she went down to the 11th percentile in weight from the high-thirties) and did not grow at all vertically. My mother would joke that she looked like a “불쌍한 애” (loosely translated, a kid to be pitied) because her cheeks were so sunken and all her clothes were hanging loosely.
This picture was taken AFTER she gained back some weight!
As most mothers in my situation would do, I did not concentrate much on Aerin’s verbal development during the time she was sick. And in the following month, I was so hell bent on trying to get her to gain some weight and stay healthy — being able to see her ribs was breaking my heart — that once again, I did not worry too much about her lack of spoken words.
When Aerin was 18 months old, our pediatrician asked how many words she knew (a routine question at this age). The answer, which was 10, was definitely on the low range. But we recalled how Claire, at the same age, only knew a dozen words….only to have a language explosion a few months later and now speaks three languages comfortably.
Keeping in mind that we’re a multi-lingual home, and the fact that Aerin had been sick for a prolonged period of time in the previous month, we decided to take the “wait and see” approach.
Aerin is now 19 months old, going on 20 next week. And the number of words she knows has not changed.
In fact, I have been noticing other troubling signs…
She rarely responds when we call her name. Oftentimes she seems to be in her own little world, and we have trouble getting her attention even with physical touches. She doesn’t like playing with other children, and she is very attached to me. She is constantly moving.
She prefers to destroy rather than build; I have yet to see her stack even two blocks on top of each other. She regularly takes a small group of objects, usually cornering them against our sectional, and throws them against each other.
She absently taps and scratches at the surface of whatever she’s touching. She routinely walks on her toes.
It seems to me that along with the speech delay, Aerin is exhibiting some signs of autism. 😐
On the other hand, she knows the purpose of certain objects like balls and toy cars. (And sunglasses, as you can see in the picture above. She wears them normally or perches them at the top of her head depending on her mood.)
She can point to basic body parts when asked. But then again, she has to be in the right mood for this, which isn’t often, whereas with Claire she would do it almost always at this age. And she knows to wave and say “bye” and blow a kiss goodnight.
She does not have any OCD tendencies (if anything, Claire is the OCD one in the family), nor does she engage in rocking or hand-flapping. And she is definitely starting to learn how to play with different toys a lot faster than she has ever been.
But then again, every kid is different, and each autistic child displays a different set of symptoms. And practically every parent of an autistic child says that they knew something was wrong, despite what others said.
Am I just being paranoid? Perhaps. J thinks that Aerin is just a bit delayed and that we shouldn’t worry. When I begrudgingly brought up my concerns to my mother (because I was afraid she’d freak out), she said that she can certainly see how Aerin is developmentally slower than other children her age…but now she’s concerned too, because she sees what I’m talking about!
I know that every parent becomes concerned about autism at at least one point in their children’s lives. Heck, I know I certainly had my scares with Claire; she started organizing and sorting objects by color, shapes, and such at a very young age. She’s also keen on developing specific routines and rituals, and gets upset if they are disturbed.
J also pointed out that Claire was also very antisocial at Aerin’s age — something that had completely slipped my mind — and if anything, she was probably worse, because she’s always been much more cautious than Aerin.
But now we know that these quirks are all just part of Claire’s personality. She is a healthy, thriving, smart (sometimes a little too smart for her own good) little girl.
Despite all this, I want to get Aerin checked out. We have an appointment with her pediatrician on Tuesday, and I will be bringing along my list of concerns. However, I know that the doctor will most likely refer us to a specialist and we will still have some time to wait until we know for sure. 🙁
No matter what our pediatrician says, I want to get a referral for a speech therapist at the very least. (Although the diagnosis may be a bit difficult as I speak Korean to Aerin and the speech therapist will mostly speak English to her. Does anyone know how this would work?)
It’s natural for parents to want the best for their children, and I’m no exception. But despite the increased awareness of autism and the advances our society has made in recent years — learning more about the condition, making increased accommodations, widening the availability and types of programs available for help and support — I doubt that any parent has ever wished for their child to be autistic.
Or to have speech and/or other developmental delays.
I know that I would love Aerin no less if she were diagnosed with autism or a delay. But I also know that our lives — individually and as a family — will become more complicated and probably more difficult with therapy sessions and such.
And hey, I’m human. I want the easier route.
Then there’s the guilt factor too. Did I somehow contribute to this?
Please keep us in mind in the next couple of weeks…
Hey, Jenny. First, hugs to you and some good thoughts heading your way. I know it’s not gonna happen, but do try not to worry.
I also wanted to note that my son was just like Aerin at her age but it never occurred to us to be worried, perhaps because he’s a boy. I remember reading Emily’s blog posts about Finn and being sad that I couldn’t get Javi to sit still or pay attention long enough to work on words and letters, or read books, or practice puzzles. He also didn’t like to build, just destroy, and had this excess nervous energy. Granted, he’d always been a physical kid with excess energy seeming to release in a slow leak until it exploded. And he tended to not pay attention to us much. I was comforted because my mom has always told this story about me – she took me to the ped thinking I had hearing problems and after a few tests, the ped assured her that I could hear fine. I was ignoring her! So, when my son didn’t pay much attention to us and seemed in his own world, I figured he was just my kid.
He’s now a verbal, very engaged, funny and interactive kid who still needs periods of “quiet time” – time to sing or talk to himself, hang out in his own little world and not have to deal with other people. He’s just short of two, had a word explosion that was more like a snowball than a one-time blast, and seems normal in every way, if a bit advanced in mechanical and physical ability.
I tell you all of this because I’ve always felt Claire to be like me – super verbal, very precocious, and someone who likes to sit and learn and absorb – and Aerin seems more like my son. While I think it’s absolutely the right thing to do whatever you have to do to allay your own worries, I’d also like to offer this to help counter your worry while you wait: perhaps Aerin’s situation wouldn’t seem to strange if a) she wasn’t Claire’s little sister and b) she was a boy?
Note that I mean no disrespect, nor judgment.
Thanks for your comment, Marisa — I took no offense to it at all. 🙂 In our case, one of the guilty feelings I’m having is that I didn’t compare Aerin *enough* to Claire. (My parents always used to compare me and my sister while growing up and I hated that, so I hardly ever compare them.) What made me take notice was meeting other moms at playgrounds and such, hearing things like, “Oh, she only knows 10 words?” Then I’d see her next to other kids her age and see how much younger she was acting and just a bit…different.
But in the end, a declaration from a professional that this is all due to her personality, like Javi, is what I want more than anything. So your words have certainly comforted me, and given me more hope!
When you were describing Aerin’s behaviors, I thought “Oh she’s just like my son at that age.” My son doesn’t have autism or anything like it. But I just thought he was taking an excruciatingly long time to talk. My MIL wondered if he would be stunted because my husband and I tend to be quiet people. Now he is talking constantly (guess he takes after her ;-). Don’t stress too much. Sure she may only say 10 words, but I bet she knows a lot more than that.
Dear Jenny, you might have done this already, but have you had Aerin’s hearing checked out after her ear infection? My son had a a few really bad infections this winter and the Ear-specialist (I don’t know the correct English term for this kind of doctor) warned us that ear infections at that age can affect speech development since kids hear less because of fluid bulid-up in the ears (I’m only a mom who has listened to doctors with no background of medicine, so please excuse my amateurish descriptions…).
Apparently, it did not affect Fil that much, but I found it helpful to be warned…
And, with hopes of helping you to worry a little less (I do not want to disrespect your worries by any means!), I can tell you that my kid and my friend’s (both are about to be 2 in August, so just a little older than Aerin) display some of the behavioral traits you described like throwing things and not responding to their name being called.
I’m an optimist at heart and I’m thus confident your doctor will be able to help resolve your worries. That said, I will send comforting thoughts your way and hope that your reader’s comments will help you survive the next weeks!
We haven’t gotten her hearing formally checked after the infection, but I have done a simple hearing test a doc friend told me about: lightly rubbing my fingers together near each ear to see if she responds. And just based on this test, she seemed good. But yes, I plan on asking to have her hearing tested when I see the doc on Tues!
I am a speech therapist, and without seeing Arien I cant say anything too concrete, but you had questions about speech therapy with the therapist speaking English and you speaking Korean. You would probably be in the session and instructions/games etc would be given in both English (from the therapist) with you repeating the same instructions in Korean. This way Arien is getting both languages during the session.
Getting evaluated by a speech therapist is never a bad thing, because you kids are learning 3 languages at once it is understandable that her expressive language could blossom a bit later than children only learning one.
Also, given the area she’s in, they may be able to find a speech therapist who also speaks Korean, don’t you think? I mean, I get the feeling they’re quite close to New York, and I would imagine that if you could find an English/Korean speech therapist anywhere… But you would have a better feeling for the likelihood of this than I would.
Yes, there is a chance you could find a Therapist who is bilingual and that would be ideal. Speech therapy at that age is very much play based, and giving the family things to try at home and different ways to increase language and working on being more flexible with routines and activities.
Thank you for your input — that’s what I thought would happen!
It’s not uncommon for children in multilingual homes to start speaking later than other children. That part isn’t such a big deal.
Any test with a speech therapist is going to involve pictures and play and as long as she’s using appropriate words in SOME language, that’s what the therapist is going to be interested in. Things like: does she make requests when she wants something or does she just grunt? Does she use imaginative play (playing with dolls like they’re babies or making a stuffed dog bark, etc)? Those kinds of things are more important than how many words she has.
Whatever the case, you of course didn’t cause it. Getting her tested will only help because if there is some problem, you will get some tools to help her function at her highest possible level.
Maybe Aerin is having speech problems because she isn’t able to distinguish between the 3 languages she hears at home? Some kids just have issues with language. One of my friends grew up in a dual language house (Tagalog and English) and she had many speech delays and had to have speech therapy for a few years to catch up.
This is something I was thinking as well. I had also remembered hearing in a child development class (many years ago and to be taken with a grain of salt) that frequently second and later children speak less at first because they just don’t have to, their older siblings communicate for them. So Aerin has got a little double whammy between the multilingual home and being the second child – it’s quite reasonable that she does know a lot more than she lets on and will catch up just fine!
I only have a moment to comment, so I won’t address many specifics, but quickly, several things:
1. I will be praying for your peace as a mother and for your family’s peace as well.
2. I think Aerin is still too young for a formal diagnosis for autism, but certainly early intervention is the best.
3. If she IS autistic (and I’m not saying she is – like others above me, she just sounds like a normal but different child from Claire), as the sister of an autistic person I really can’t recommend strongly enough to involve yourself with organizations and support systems that focus on autistic children as being merely “different” rather than as having an illness. I see so much rhetoric now about “finding a cure” and crazy treatments that people try (I am in favor of attempting diet change to help autism, but not much else) to try to fix their “broken” children. I totally believe that you would love her no less, but it pains me to see so many people try to turn their precious, different children into something they never can be when who they already are is so wonderful.
I can’t say for Aerin, but I wanted to give you my experience with worrying about autism and speech.
With my older son, I was worried because some family members kept making a big deal about how he wouldn’t let anyone touch/share his food even if he wasn’t eating it. He liked his socks on straight and his shoes couldn’t be too tight, he won’t wear shirts with collars or hoods, stuff like that. I am the type of person who likes things to be a particular way (especially clothes) so I didn’t think much of it. We went and had him tested for early intervention and mentioned it and they said it seemed like he had some OCD-like tendencies but nothing to be concerned with. At the testing he didn’t put the cheerios on the string like they asked and didn’t stack blocks. Although we didn’t have blocks at our house (or cheerios and string) so to me it didn’t seem like he know what to do? Anyways they said he tested ok, and mostly just asked us if we thought he could do those things.
He did not talk much when he was 18mo or 20mo or even 24 mo’s. But a few months after he turned two he started talking more and more, it wasn’t even a language explosion or anything, he would just learn new words every once in a while. He turns 3 in two weeks and is totally fine, he talks in full sentences and uses words appropriately. Being around other kids made it much harder, because he was slower with speech than most kids. But we had him tested for that as well, and he was still within the age window of what it’s “normal” I guess.
I have a 18 mo old now who says around 10 words, and I’m not concerned at all because that’s more than my older son said at this age. I think having the first one be a little behind has helped me to not be as stressed with the second.
Anyway, I hope you get answers that comfort you, much like I did.
Aw Jenny!! I am thinking of you and your fam! Noelle didn’t start stacking blocks for the longest time, and only recently (at nearly 2.5 years old!) started really getting into it. I hope you get some news soon!
I don’t know if you read hellobee, but there were some great guest posts on autism lately – http://www.hellobee.com/guest-series-raising-a-child-with-autism/
Thanks! I haven’t been able to read Hellobee much for the past few months because I’ve had to cut back on web time, but I’ll certainly check out your link!
I also wanted to say that you absolutely didn’t cause it, if it is the case, and I will definitely be hoping that she’s not autistic. However, if she is, I know you will find the best resources for your family and you will all adapt! I can say that my 16-month-old has many of the habits and tendencies that you talk about, but that she also has certain characteristics that has always made her pediatrician absolutely sure that she’s not showing autistic tendencies. Okay, that might not get across what I’m trying to say. What I mean is, many of the things that are highly correlated with autism can also totally show up on their own, so I understand why you’re concerned but I think it’ll really take the therapist’s evaluation to put it into context. It’s hard when you’re just looking at other people’s kids or other moms’ reactions. Our daughter walks on her toes a bunch (she even does like me and curls them over so she’s walking on the tops of her feet), and she’s always been very destructive–only just started stacking blocks a couple of weeks ago. I don’t think she’s *ever* responded to her name (although she will respond to “baby” when she feels like it), and she’s never been big on physical closeness. When she was a little baby, she wouldn’t look me in the eye when she was nursing, and she always acted like she couldn’t wait to be done. Now, as a toddler, she absolutely will not be comforted when she’s sad or hurt; she only gets more angry if you try to hold her. On the other hand, she’s very social (including a strong desire for shared experiences), she’s started giving hugs and kisses of her own accord, and her language is really doing well. So that’s just another example of another kid with a similar but different constellation of characteristics, and I will say that it did occur to me to ask the doctor about it when she was about 8 or 9 months old. It could be that Aerin is autistic, or it could be that she just unfortunately hasn’t kick-started her development in a couple areas that are well-known for being co-incident. I’ll be thinking of you guys!
I had the same concerns about my son since he was about 10 months old. He couldn’t roll over or respond to his name or anything. We delayed putting him in an early intervention program because I was convinced he was just a bit slower because he was premature. FF to him at 18 months – he didn’t know how to say or do anything. Even simple things like using a spoon was foreign to him. We finally did all the testing (the ped thought he might be on the lower end of the spectrum because he does have a habit of touching and rubbing objects for no particular reason) and it was negative, but the speech therapist and early intervention specialist said he was basically 18 months old, but at the competency level of a 6 month old. I was distraught. I waited too long. I put him in speech and occupational therapy right away (two sessions with each profession every week – costly, but worthwhile). When he turned two, I put him in school to force him to socialize and learn in a different setting (he was previously in the care of a nanny). His teachers were extra careful with him and always went above and beyond to help me in getting him “up to speed”. At nearly three, my son is finally “catching” up to his peers. He certainly can’t speak as clearly as all of them (he’s still working on it), but he can speak two languages. BTW, I stopped therapy once we moved, so he hasn’t had any therapy in the past three months. In the past three months though, he’s had an amazing word explosion. He’s stringing together sentences (finally) and is able to articulate his wants/needs better. I think Claire was so advanced that it makes Aerin seem even that more slow. Don’t compare the two (I know it’s hard to do) because they all learn in their own ways in their own time. I know with my daughter who is turning one, she is LEAPS AND BOUNDS more advanced that my son was. She knows how to turn on the ipad, put in the code, and even go to the page that has videos so she can watch the movies we have downloaded. My son only recently learned how to do that.
YES to this comment: “I think Claire was so advanced that it makes Aerin seem even that more slow.”
Like I told Marisa above, I try my best not to compare the two because I hated it when my parents did that to my sister and me while growing up. I have only started to compare their milestones, after I began to get concerned about Aerin’s delays, and yes, I agree that Claire being advanced makes Aerin seem slower, so it really isn’t a fair comparison. :-/
Thanks for sharing with me your experience!
Oh my goodness – the range of what is considered “normal development” for a child this age – is so broad!! It’s tragic that so many people look for behavioral and social variances and attempt interventions at this age. Moreover, there’s no definitive answer at this age!! Autism is a spectrum diagnosis – based purely on observations of behaviors from a checklist – most of which are behaviors normally displayed by children. So, the abnormality of these behaviors are not their simple occurance. Moreover, while pediatricians may have experience with children who display behaviors suggesting a developmental disability – all such disabilities are within the realm of childhood mental, behavioral, and social disorders. So unless your pediatrician is also a practicing mental health provider – your pediatrician would not be the ideal professional to consult – even though this is the recommendation by most laypeople.
Obviously, you will do what is in your heart. But your child’s confidence – at this age – resides in part – with you. If you believe that she is well and healthy and growing at exactly the right pace that she should – then she will do so. Even if the right pace for her – seems slower than others. The future is yet unwritten, and assessing her for intervention at this age is something that should be very carefully considered.
Nevertheless, if a speech therapist is what you want – then you are within your rights to consult with one. However, even if one is not needed, the minimum requirement for a parent who is willing to advocate for one is small enough, that one can be approved regardless of genuine need. Moreover, following through with an assessment and speech therapy services will label your child with a disability that will be noted in her records and will follow her to school, as this is required in order to access any services at all. Even if she “outgrows” the need for continued intervention.
Although this seems counterintuitive – to not seek assessment and services – there is a real difference between assessment and services provided based on need and assessment and services provided based on parental advocacy. If this situation resembles the former – then by all means – assessment and services could prove beneficial. However, if this situation resembles the latter – then this would be a situation in which I’d advise caution. Moreover, you could also do some activities with your little one that would “approximate” the focussed language attention she would be receiving through speech therapies, if you wished to pursue it yourself.
Good luck!
p.s.
I’ll also add, that when my little one went through a slow expressive verbal phase (this is the speech that you appear most concerned about – speech which is vocalized), I stopped speaking so many languages around my little one and focused on English for a couple of months (since English is the primary language in our family). His language took off!! After a few months of amazing progress, I slowly reintroduced other languages again, at which point, it seemed a lot easier for him to incorporate and integrate all of the languages together.
Although my pediatrician asked if I wanted a speech consultation, when I noted the delay in my little one’s expressive language development, I declined, which my pediatrician did not protest. Like my pediatrician, I’m well familiar with the variances of development at this age, and my little one’s overall development did not indicate a significant degree of concern for me.
Good luck!
This is one of my primary concerns regarding this matter, that while some parents say that there is a wide range of “normal” and that I should be patient, others — especially those who have autistic or developmentally delayed children — say that getting tested is never a bad thing and that early intervention is very important. (And I can think of at least two bloggers off the top of my head who were chastised for not acting quickly enough, or even in the case of commenter Christine above, who regrets that she waited too long.)
I have decided to play it on the safe side and at least get her tested (and as stated in the post, I’m well aware that our pediatrician won’t be able to make a diagnosis — we need just him him to make a precursory observation and make a referral). And of course if the specialist(s) say that there’s no need to worry, I won’t pursue it further…unless she started exhibiting more symptoms as she gets older, of course.
I hit “post” too toon. 😛 What I meant to say is, “I can think of at least two bloggers off the top of my head who were chastised for not being proactive about their children’s delays”
I completely understand your concerns!
:hugs:
I’m merely adding to information you already know and providing food for thought – for you and others – about the perceived “harmlessness” of assessments. Not only is this perception often also a function of a lack of comprehensive understanding or full disclosure concerning the validity, accuracy, and “truth” of such “tests”, in this day and age of labels – it is incredibly challenging for children to shake labels when they’re applied. Often, such damage goes unchallenged in balance against the perceived good from the services rendered for the dsability label applied. Nevertheless, such considerations are important to the discussion as a whole.
However, I do wish you the best of luck. Whether it is a disadvantage or not – my professional experiences in the field of developmental disabilities certainly affects my point of view. Moreover, as a mom, I see my little one through both sets of eyes – that of a mom – and that of someone whose day job used to include assessments and interventions for children with disabilities. In the end, I trust my “mom” instincts more. But again, it is easier for me to “rest easy” when my confidence in reading “clinical signs” may be easier than for others.
:hugs:
btw, I’ll also add that I completely understand the concern of parents with children who display behavior within the range of an autism spectrum disorder – for early intervention. It is certainly true that early intervention has been proven to be critical for helping children – however this is often advocated without a comprehensive understanding of the limitations of any intervention – early or otherwise – for some children who display significant behavioral deficits.
Hindsight being what it is – parents can be chastised for many things – by many people. Choosing to follow your instincts as a parent should not be one of them, imo. For early intervention – even in the case of autism spectrum disorders – is not a guarantee for adaptive behavioral or verbal improvements. Early intervention is merely advised, because for those children who are receptive to such treatment, the earlier the intervention, the better. Needless to say, many children receive extensive treatment, early and otherwise, and display no significant improvement to their condition despite years of specialized treatment.
In any case – that does not sound like the situation you’re describing! Moreover, your pediatrician should be providing you with a checklist every visit that screens for autism spectrum disorders. It may be that you were not aware of this (?), but my little one certainly has, since I recognized the questions as specifically targetting “classic” behavioral attributes of autism spectrum disorders.
I hope this provides additional information. I wish you the very best! – M.
please visit http://www.nj.gov/health/fhs/eis/documents/faq.pdf
If you are worried, you should get it checked out. Even if it’s nothing, the chance that it COULD be something warrants a closer look as early intervention helps SO MUCH. Don’t wait for the peds to give you a referral. NJ state does home evaluations for free, so it’ll give you a peace of mind. I have a mommy-friend whose baby was evaluated around 14months (free of charge, they came to their house like 2-3 times for a few hours to observe the child), he was ultimately placed in therapy, and has grown by leaps and bounds since. You can tell how much of his progress is due to the therapy and probably wouldn’t have happened had they waited or tried to do it on their own. When they took a month off of therapy sessions for vacation, he definitely stopped growing and even regressed a little.
Wow. As always, I’m so impressed by your candor. I would absolutely take the route you’re taking and set up interventions immediately. You’re her mother and you know her best; you are right to trust your instincts. As a teacher for six years in the public school system, I cannot tell you how many parents refuse to accept interventions for their children; they deny that anything is wrong and pretend its just a phase. You have no idea how lucky Aerin is that you’re advocating for her this early. 100% of the time, one of the main reasons students don’t graduate high school is due to lack of parental support. I’ve seen the power of parental involvement; I taught a very delayed student with special needs who many doubted he’d ever graduate. His father worked his ass off by attending every meeting, every intervention, helping him with his homework, and making the most of every resource. Today, this student is well on his way to graduating high school. I truly believe a child can accomplish anything if their parents are behind him/her.
Hello Jenny,
It is recommended to learn sign language alongside Aerin.
My brother taught his son (now 8) and daughter (now 5) American Sign Language following youtube videos and other sources at a very early age. If speech delay or impediment worries you with Aerin, ASL is a backup which will allow her to communicate with you.
Fast forward to present day 2013, there are quite a few classmates of my nephew and niece using ASL as a primary means of communicae even though they hear and speak fine. This is a benefit to both parents and children in case the parent loses speech or hearing in the near future as well.
Just a thought. Godspeed and hoping for the best.
Regards,
Jay
Everything is gonna be alright! *BIG BIG HUGSSSSSS*
Hi Jenny!
As a person who used to have a speech delay disorder when I was little, I can assure you that once Aerin gets talking, she’ll be fine. After some years of therapy as a toddler, I didn’t need any speech classes after that and I always seemed like a normal kid in reference to mental development. It might have helped that I was always outgoing, even when I couldn’t speak, so I don’t know if Aerin might be a different case. Honestly, if you saw me today, you would have no idea that I had a development disorder when I was little.
My speech therapist only spoke English, which is why my first language is English and that’s the main language I spoke my parents for years. However, now I speak to them in both English and Chinese, their native language, just like any other bilingual/first generation American kid. However, my parents sometimes do regret that I was exposed more fully to Chinese earlier in life. Then again, 10 years ago, there probably weren’t a lot of bilingual speech therapists, or therapists with translators. Maybe those are better in the long run.
I don’t know if that helps or not but don’t be too worried. I probably wasn’t checked out for my development delay until I was 2-3, so Aerin should have plenty of enough time to catch up if it turns out she only has a development delay.
Wish you the best!
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