I am so confused by my 20 month old

Ashley - posted on 12/29/2014 ( 19 moms have responded )

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I have been in touch with our state early intervention program, and am supposed to hear back from them about an evaluation for my daughter. I realize autism is a spectrum disorder but she always seems to prove me wrong.
Lily is social, loves people, great eye contact, has wonderful joint communication, shows is toys and plays games with us, waves, points, and has about 40 words she uses consistently and correctly. She can communicate her needs for the most part and always looks to us for approval. Has no issues with sight, sound, or touch and even let's us clip her nails and brush her teeth with ease. We can also take her to restaurants bc she is well behaved and rarely throws tantrums.

Why are you having her evaluated you might ask?
She arm flaps when extremely excited
Hums while eating or tired
Toe walks (20% of the time)
Tilts her head back and shifts her eyes down to look at stuff at least once a day.
And her pretend play isn't great. I think that is partly my fault.

Then today happens and it makes me wonder if I'm freaking out for no reason.
The way our daycare is set up there is Nursery 1 (6 weeks to a year), Nursery 2 (1 year to 2 years but can switch at 18 months if ready), Toddler 1 (2 to 3), toddler 2 (3 to 4) and then pre-k (4 to 5)
They decided at 20 months they felt Lily was ready to try and switch. I was nervous because this is the biggest change they go through at the day care, less one on one, a second teacher but also double the children, they must eat at a table that is not a high chair... Just a regular table, feed themselves, and the biggest change.. They don't sleep in cribs... They sleep on cots. I figured Lily would have some issue somewhere but this is how our day went..
Arrive at daycare.. Lily proceeds to make eye contact, smile, and wave and say hi to everyone we see.
Drop her off in toddler room.. Smiles and waves to the other kids then proceeds to play with kids she doesn't know.
Apparently she sat at the table and fed herself with a spoon only having to be told to sit back down once.
And drum roll please... Slept for 2 hours on the cot... No issues. I mean she always sleeps great but not on something that doesn't contain her.
She never had one upset moment.
I walk through the door she waves hi, runs over, I pick her up, she waves bye and we leave.
The daycare teacher for toddler 1 said its one of the easiest transitions she has ever had. She took to everything so easily...
She is 20 months old.

I am so proud of Lily, but also more confused than ever. I am keeping my appointment with early intervention regardless but does any of this that happened today sound at all like autism?

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Sarah - posted on 12/30/2014

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My suggestion is stop worrying and diagnosising! Worrying is never going to leave a mom but if that is all you focus on you loose out on life, your kids, and you will always find a problem! A baby not eating solids at 6 months is normal and actually healthier then that baby you saw eating from her parents plate. Until a baby is 12 months old their main source of food should be their bottle as that is where they get all their nutrition! After 1 yr it is then natural for them to gain interest in solids and eat more and drink less as that is when their body needs less milk and more solids. Her reactions are what you would expect from a baby and from a baby that has had hearing problems. As Evelyn said there are many doctors and teachers that are quick to label......even parents. If you look for problems you are ALWAYS going to find them.....that DOES NOT MEAN THERE IS ONE! We all develop and learn differently we all have issues. I like things picked up and orderly. As a child I liked routine and has a hard time with change....I am still this way. These behaviors match someone with OCD....but I am a normal person that was never labeled OCD....I graduated college, have a professional job, have a husband and soon 4 kids. I also have sensory issues. As a child I would not eat if my hands got dirty, I did not like dirt, sand, etc. I still don't like certain things but it does not stop me from being a normal person.

In life there are things you can always focus your energy on worrying about, but then you miss out on life and people get tired of listening and being around someone that always worries. My oldest is 17 yrs old.....I could worry about him driving, his grades, his future, etc. There are many things that could go wrong...he could get in a car accident and die or get paralyzed or just get hurt. He could fail a class and not get accepted into college. These are all worries I do have BUT I can't focus on them or I miss out being apart of his life. Anything can happen to anyone of us at any time but you can't focus on the what if's as those will never end.

Ev - posted on 12/30/2014

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And by all means, have her evaluated. It could rule out a lot of things for you and make you feel better about it. But that flapping is from excitement as you stated in those examples and then she settles into playing with those toys. Not all kids are going to play pretend from pretending to drink or being a parent. All kids are not hard wired to do all those "normal" things. Encourage the play she does love to do though.

Ev - posted on 12/30/2014

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And Ashely, do not be too hard on yourself. You were doing what you thought best at the time. My kids are much older than yours and when they were two I did not know about the TV thing. But my kids would sit and watch a half hour of TV at that age and then go to the toys or something else. Also, imaginative play develops over time. Anytime you see her imitate you for example, she is using her imagination. And even from TV she will pretend to be that character she sees. And at daycare, she is going to have vast chances to learn watching the older kids play pretend. So I would not worry.

As for being a perfect parent, there are none. None of us mom's here are perfect and we have all had our share of mistakes big or small. We have had to learn trial and error as well. That is all you can do.

Ev - posted on 12/30/2014

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Research says that children under the age of two or three do not need TV at all. The neurons in the brain are forming certain attachments that are needed to develop and if you use the TV as a babysitter as you put it, the formation of those neurons change causing the child to rely on the TV for the same things that they would rely on other ways to get the same things such as feed back. It does not mean however that she his Autistic. And from what I read in all your posts here, she is typical. Even typical kids flap their hands or arms at times because they do get excited. Sometimes they tip toe too. I think you over react.

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Ashley - posted on 12/30/2014

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Like I said... every day is something new, and every day she surprises me! She did wonderful again in the toddler room. She followed her first real directions when we got home that didn't benefit her. I can tell her to "go wake daddy" and she will go wake him up but she enjoys that. I can tell her "lets go take a bath" and she will run to the bathroom, but she loves baths. When we got home I took off her socks and shoes. She grabbed them and threw them in the floor. Not in a mean or temper tantrum way, she just did it to do it. I said "Lily pick up your socks and shoes" and she actually walked around and picked up both shoes and both socks and brought them to me!!!! No benefit to her.
Also tonight while feeding herself after she ate her fool meal a gave her a tray of Gerber Graduates meet balls... she loves those. Well a lot of times she accidentally dumps things out of trays and will just leave them in the floor or on her high chair and eat them from there. Tonight she accidentally dumped out the meatballs and proceeded to pick them up and put them back in the little tray the came in!!
I can tell a difference in her personality just from today and yesterday. Her communication skills grow constantly!

Ashley - posted on 12/30/2014

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Oh yes I could definitely tell that you were not arguing, I wanted to make sure you knew I wasn't hahaha. It is so great to have contact with someone who has some experience in this. I think that my next biggest fear to not having her diagnosed if she is and losing ground, is having her diagnosed too early and carrying the weight of the diagnosis the rest of our lives, and she simply just needed more time to grow.
I for one was not concerned about her at all up until she was about 14 months old. We had some issues with her eating. Up until she was about a year old she was not interested in foods. Was very picky. Really just preferred her bottle. Wouldn't even eat her birthday cake at her 1st birthday. Then it was like something snapped and she started eating everything. That was really my only concern and I for sure wasn't thinking autism at the time... I knew nothing about it. It wasn't until she was 14 months old and I was sitting at a restaurant with a woman who had never met Lily before, she loves to talk, as she talked my ear off I noticed a young baby, probably 6 months old, sitting in a high chair and eating food off of their parents plate, and I simply made the comment to her "I wish Lily would have been that way that early on.. would have made life so much easier". She quickly chimed in and said "I don't want to freak you out but not wanting to eat solids is a sign of Autism..." This didn't initially bother me bc we had already surpassed this problem and Lily would eat everything in sight. Once I got back to work I thought to myself.. hmmm... I wonder what other things are symptoms of autism and started researching on the computer. At that point I realized Lily was behind. She wasn't responding to her name well when called, was babbling constantly but no actual words, seemed to be in her own world, no joint communication at all, and was not walking, was not pointing or waving hi or bye and was humming. In my mind it was like "oh my gosh she has autism". We switched off the TV and started working with her vigorously. My biggest tool was bubbles. They taught her joint communication. She learned she had to look at me in the eyes before I would blow. She figured out how to interact with me while playing, and started handing me things she didn't know how to do so I could how her.. all of this happened within a week of working with her. Still did not respond to her name well, and was not talking or gesturing.
I immediately approached our Pediatrician who suggested getting her hearing checked. Sure enough her ear drums, that were supposed to vibrate when sound came in, were completely flat. After an appointment with an ENT we scheduled tubes at 16 months. The ENT said her ears were very "NASTY".
After 1 week with the tubes she started walking, and said her first word.. and I will never forget it. We had friends over and she fell and said "Uh-Oh!" They all thought I was crazy bc I was so excited. At first she gained 1 or two words a week, and then 2 and 3 a week after that. Now she learn a new word every day. Within 3 weeks she had at least 5 words, she responded to her name 90% of the time, and was more present in our lives. After 2 months Post tubes she had about 15 words and started waving and saying hi and bye, and finally 3 months post tubes she began to point. Her pediatrician isn't concerned because she is making consistent progress and says he will only be concerned if that progress stops or regresses in any way.
She points at everything that interests her now, but still isn't good with pointing to what she wants. She has her days and is still learning. One day she pointed and said "Bite" every time she wanted a piece of her snack I was holding in my hand, other days she will get mad and yells for a second if I don't just hand it to her automatically. I am sure over time she will get better with this.
I was feeling good post tubes with so much progress on her end, and stopped fearing autism because all of her red flags had melted away except the moaning. Then the flapping became more persistent, she started to do a bit of toe walking while she was playing, and then finally Christmas night she would slide down her play slide and she started tilting her head back, shifting her eyes down, and watching herself clap that way. She repeated this behavior a few times and then stopped. The next day she did this a few more times during play with a few different objects, but it was very brief, I haven't really seen her do it at all the past two days. But it was enough to send me back into a tail spin of emotion.
Now I inwardly pick apart every little thing she does or doesn't do which I know is not healthy so that is why I finally called early intervention. The stress was too much to bare, as much as I tried to relax I couldn't. I was so afraid of her waking up one day and being a totally different kid... you've heard the stories of that kind of regression.
If she turns out to not be diagnosed as having autism then my next worry will jump to whether or not to have another child. We have always wanted 2. But in my mind what if she wound up having just an extremely mild form of it, not enough to even illicit a diagnosis, but the next child winds up having it severely. Like I said as you can see I am a worrier. That is my story! Thanks for sharing yours. Nice to talk to others. Calms me!

Ev - posted on 12/30/2014

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I am not arguing either. I have worked with kids with and without Autism and it does come in many forms. My own son was diagnosed with ADHD or ADD at the age of 6 and the medication never worked but that was not his problem either. He did have learning delays and other issues that the school has more than addressed and helped with over the years. He spent a semester in a group setting in the school system outside of the normal classroom to learn some social skills and to learn to control other behaviors. He was diagnosed as Autistic at the age of 11. But he is so high functioning that no know would have known. I to this day doubt that he is because though he showed the signs of it, there are so many things he does not show that make me wonder if they did diagnose him wrongly. Also, in that semester he was in that classroom setting, his one therapist asked me what I saw in my son. I told her I could see the signs of Autism but did not think he was that. She said yes, but he was an unusual young man. He does see things a lot differently than others do. But he is normal in every other context you can think of. That is why I am not so eager to say he does have this because it could be something else. Too many doctors and teachers in schools are so quick to judge a kid on ADD or ADHD or even Autism and even though WE ALL do have signs of different disorders at times that does not mean we have that disorder.

Ashley - posted on 12/30/2014

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For the record I am not arguing with you! I just want to make sure I'm putting in as much detail as possible. This is the first time in months that I have gotten to actually talk to anyone that seemed knowledgeable and cared about my concerns. Everyone else brushes me off. Her dad doesn't brush me off, but is not a worrier. He goes along the lines of "If she is then she is, and all we can do is find out" he doesn't want to discuss it with me or anyone else, doesn't do any research... which is probably for the best.
Any time I try to bring it up to anyone in person they just sit there quietly and looking at me awkwardly. No one wants to discuss it or comment. They act like either because she is not sitting in a corner and rocking she doesn't have it, or they just aren't sure what to say so they don't say anything. I am just so relieved to finally talk to someone. Even though I will get to talk with EI within the next few days, they said it could take up to 7 to hear something, and when you are worried about your child 7 days can feel like forever.

I will say I am so proud of her for handling switching to Toddler 1 so well and really hope that she has the same experience today so I can see this is something that is going to stick, and yesterday wasn't just a fluke haha. Today will be the true test too, bc yesterday she was in a great mood when we got to daycare, this morning she was weepy and clingy so I guess we will see. Here is to hoping!

Ashley - posted on 12/30/2014

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The arm flapping is consistent when excited. She will do it repetitively. We were playing with blocks the other day and we were putting them back in the bag. She would toss one in and then flap, toss another in and then flap, then she would watch me toss one in and flap. She doesn't stand around and do it for no reason, but she does do it a lot and repetitively when excited or watching tv. A lot of time its when we start something new. When I first broke out the lego blocks after Christmas she would stack one and then flap, she continued this for the first 5 minutes repetitively, and then finally sat down, relaxed, and just played. Now when we play with blocks she doesn't flap.

The humming is pretty consistent too. She does it the whole time she eats unless we have music on she likes. She does it when she drinks every time she takes a drink. She does it when she is tired sometimes or bored, and sometimes when she is focusing on something really hard. Has done this since she was 4 months old.

She does both of these several times a day every day consistently.

Its not just stuffed animals that she doesn't pretend play with. She doesn't pretend to talk on the phone either. She does pretend to drink from cups or eat off of spoons with nothing on them. The only symbols of pretend play I see are (and this is very recent) she has a stuffed animal cat, and will bounce her around on things and say "meow meow" because she saw me do this. She loves stuffed animals and dolls she carries them around constantly and stares at them, but does not try to talk to them, pet them, take care of them.

As far as receptive language she isn't great with it but does understand some instructions that we have been doing for a while. Here are some examples:

"Its time to take a bath" she will run to the bath tub.
"lets wake up daddy" (he is on night shift at his department) she will run to our room and knock on the closed door.
"Don't touch" She will get really close and squat down and look, but won't touch.
"No" No toddler listens to this all the time including her, but she knows what it means
"Can I change your diaper" on occasion she will go to her bedroom where her changing table is.
"lets take a nap" she will whimper and sometimes try to hide from us so she doesn't have to nap
"Are you done?" she understands this and if she is done she will say "done" and reach for us.
"Be Gentle" we had a problem a while back with her hitting when she was angry. She rarely does it any more but if she does I will tell her to be gentle and so she will rub my face softly.
"Let me have it" a lot of time she will bring it to me. This one is funny to me because I have conditioned her so well that if she finds something in the floor that is small and she knows she shouldn't have it she will automatically bring it to me lol.
"slide Olaf down the slide" will sometimes take her doll and slide it down the slide.

Other instructions like... " bring me your shoes, put the doll in the chair, bring me Doll/certain book illicit a confused stare.
She does not say yes or no or shake her head for either. Gestures have never been her thing.

After talking with you guys I am leading more towards Normal. That doesn't mean that when those evaluators call that I am not going to discuss this behavior with them. As I have already said, discussing this with you guys has made me feel a bit better though.

Ev - posted on 12/30/2014

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You said she did the hand flapping some of the time and the humming some of the time and not all the time. You said she does have eye contact, reacts, waves, talks and so on. She is NORMAL. She may not get into playing with dolls like other girls do. Not all girls like dolls. That is normal too. If your child were acting like she was seeing through you or not reacting to you very often and doing the hand flaps and humming a lot...there would be an issue to look into. As long as her doctor has not said anything about her development, or the teachers in her school have not noted anything to tell you then I would stop worrying so much. By worrying so much, you take the time away from her that you could be spending with her totally into it. You are still looking for something wrong. She is fine as far as what you have told us here.

Ashley - posted on 12/30/2014

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So basically what you guys are saying to me that because my child accepts change easily, makes eye contact, smiles. waves, talks, that having obvious problems with hand flapping, auditory stemming like humming, and not being able to feed a doll or take care of them doesn't matter because she does all of the other things? I just want to make this clear in my brain lol.

Ashley - posted on 12/30/2014

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Thank you Evelyn. This doesn't make me feel better about myself as a parent, however, it does make me feel a bit better about our situation. All I can do is start now and go from here. She got a lot of good toys for Christmas that are age appropriate and help with imagination. She will probably get upset, in fact I know she will. Because when the TV is off she will a lot times get upset and point at it. Or stand there and stare at it and then look to me in hopes of me turning it on. She will even grab the remote and try to turn it on herself. However, as hard as it will be not to give her what she wants, I know I am doing her and myself a huge favor in the long run.

Ashley - posted on 12/30/2014

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Okay I know I'm going to get damned to hell for this one, but let me just throw this out there. I have been researching infants and watching TV. I have to admit something. My husband is a State trooper and works really weird hours and it gone all the time, I am a full time employee as well as nursing student. When Lily was 3 months old she had never watched any tv. It wasn't until we went to a friends house and her 6 month old was watching it and enjoying it and giggling, and she told me it was so nice because it gave her free time to cook dinner and what not.
That is when it all started. I was in desperate need of some free time. What did I do... I turned on the tube. Lily instantly fell in love. She would come home from day care and I would instantly turn on the TV. We would watch from the time we got home 4:30 unitl she would go to bed.. at 10. We would play and cuddle and talk too, I didn't just set her down and leave her there. But I didn spend a lot of time doing my school work, cooking dinner, and all of that and she would sit there and watch and just laugh. Weekends were even worse. Even if she didn't watch what was on we had the TV on all day. I realize now after reading how absolutely awful this is. I fell into using the tv as a baby sitter. She has probably watched an average of 2 to 3 hours of tv a day her whole life, sometimes more. Could this be her issues with the flapping and humming. I have noticed she stops the humming when the tv is on or there is music playing? Could this be why she isn't quite sure how to pretend play.. because she has never had to? Could this have caused some sort of repetitve play because she isn't quite sure how to play? I can promise you from this day forward she will not watch any more tv. She loves the movie Frozen and sings a long to the songs, but she will have to be okay with just the music. Could this be the reason behind some of her issues? Please don't give me a lecture. I get what a horrible parent I have been, and no matter how busy I am I should have NEVER resorted to the television with her.

Ashley - posted on 12/30/2014

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What you guys are saying does make sense, and it does make me feel better. I don't want to rush to label her by any means, I have noticed these things for the past 6 months and haven't done anything up until now, I have waited and researched, and talked to people. I get such mixed advice. My biggest fear is 6 months to a year from now it gets worse instead of better and we will have lost so much time. So much time that we could have made progress. From what I hear there is no cure for autism, but the earlier they are helped the better. And at 20 months old, and being so close to Neuro Typical, I feel that she was DX'd with some form of autism or any other disorder we would have a great chance of helping her and her leading a happy and healthy life. They say that every second/hour/day/month/year that you can get them help, the better the outcome. I just don't want to wait too long.. I don't want to have any regrets.. this is my child's future and I just want to do what is best.

Sarah - posted on 12/30/2014

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I would agree with Jodi. Just because a child does something does not mean something is wrong. Too many people jump to trying to diagnose their child. Autism is the new adhd.......everyone thinks their child has it when they do something they have heard is a "symptom". Being aware of delays and issues is good, but trying to analyze everything she is doing and put a label on that is not good. We could all be labeled with multiple things but that does not mean we "need" that label. Once you put a label on a child you put restrictions on them as society looks and treats them differently. Even schools treat them differently.

Jodi - posted on 12/30/2014

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I would suggest you stop trying to label your child then. She sounds perfectly normal, and given she is in daycare, believe me, if they thought there were concerns, they would say something. You are WAY over-analysing her behaviour.

Ashley - posted on 12/29/2014

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That is not the only way she plays, she will slide the animals down the slide , she will climb up and slide too, she loves playing with Legos but only if I play with her, and loves to sing songs and read books, but she gets into this zoned out repetitious behavior from time to time and it's strange to me.

Ashley - posted on 12/29/2014

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No one. But her arm flapping, obnoxious self soothing humming, toe walking, lack of pretend play, and what I forgot to add.. Repetitive play are all red flags. She has a slide in our house and she will spend 20 minutes taking her doll and sit it on the slide, walk all the way around the slide, pick up the doll, place it right back in the same spot and walk around the slide again. She will do this the exact same way over and over for 20 minutes if I let her. She will stop if I direct her attention elsewhere but sometimes it's hard to get her attention when she does this.
Since autism is a spectrum disorder I was asking of this behavior alone might put her on the spectrum.

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