What should I excpet to happen next with Develomental Delay Eval?

Ashley - posted on 01/05/2015 ( 48 moms have responded )

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Okay so I am going a bit crazy. I talked to our states Early Intervention a week ago about our daughter. All they did was take her name, age, address, and social, and a very brief summary of what problems we are seeing. They then told us that we should be receiving a call from our Counties Representatives within a week and we can go from there.
So here I sit on Monday... exactly a week later, and I plan to call tomorrow if I don't hear anything. I am not the most patient of people in the world so I am wondering if anyone with experience with this could tell me maybe what to expect next. Will we do a phone interview? Will they just want to straight out come and see her? She is a very confusing case for everyone.
She smiles, makes eye contact, waves, points, talks, has joint communication, no melt downs or tantrums, feeds herself and will eat almost anything, doesn't seem to have any issues with lights, sounds, or touch. She is social and has friends at daycare. Sleeps great. Our issues are as follows:
Hand flaps when excited
Hums while eating or bored
Some Toe Walking
Tilts head back and then shifts her eyes down from time to time to look at stuff. Usually when she is shaking whatever it is she is holding.
Lacking in the Pretend Play area...

I am so afraid of them calling me to question me about her and then telling me they have no use in seeing her, and then 6 months later she gets worse, and we have lost time.
Since I am worried about her will they see her anyway? I am just wanting to know what to expect. I know every state and agency are different, but I'm just curious if someone can shed some light on the process. Thanks!

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♫ Shawnn ♪♫♫ - posted on 01/13/2015

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Ashley, have you made an appointment with your physician yet? For you, not Lily

♫ Shawnn ♪♫♫ - posted on 01/06/2015

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You'll be fine, Ashley, and so will LO.

I have one more suggestion...talk to your physician about PTSD. As a military/LEO spouse, it is a very valid concern.

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Sarah - posted on 03/26/2015

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Yep. Sorry, just seems like there has been more than what has actually been done.

Ashley - posted on 03/26/2015

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All of the evaluations? I haven't had a bunch of evaluations. In late January or Early February (can't remember now) we met with Lily's "Case Manager". All she did was have me fill out a bunch of forms to get the evaluations started, and get a little bit of a background on Lily so that whenever the actual evaluator came out she would already know what she was walking into and could spend more time with Lily and less time asking a million questions. After that on February 14th they did a developmental evaluation which kinda covers everything, just not in great detail. The point of that evaluation (which only lasted 30 minutes) was to see if it was even necessary to move forth with any more in depth evaluations. The Developmental evaluator came to the conclusion that she did see red flags for autism, however, she saw a lot of things that were signs of not having it, and since it is a spectrum disorder you never know. She suggested not getting an actual autism evaluation done yet. She wanted to go ahead and have Lily do an in depth speech and occupational evaluation to see if there were any therapies she needed other than developmental, do those for 6 months and then see where Lily was at. If she was improving and a lot of issues had disappeared then we would just keep up with the therapy until she didn't need it anymore. She has not been taken to an actual place that can evaluate and give an autism diagnosis. The speech and occupational therapist both agreed that we should go ahead and get on the waiting list for an actual autism/spd evaluation since the wait would be long enough (Lily will almost be 3 by the time she could even get it) that it will be more obvious by that point what we are dealing with. Does that make since?

Sarah - posted on 03/26/2015

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Wasn't the purpose of all of the evaluations you already had done to rule out an autism spectrum disorder?

Ashley - posted on 03/26/2015

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Hey everyone! I'm back. I tried to cool it for at least a month and just let things be. Also nothing has really happened since her developmental evaluation over a month ago. I thought I would update you on what is happening. First off I can't believe my baby is gonna be 2 in less than a month. She is getting so big! So as Lily's list of positives increases so does her list of sensory issues lol. She is really talking a lot now, and trying to carry on conversation. She has started her some 2 and even 3 word phrases. She has gotten way more lovely with not only me and my husband but with others around her. She can count to 10 now completely on her own which is neat, and things are still going pretty good with daycare. She is still flapping and humming, she isn't doing much of the toe walking these days so I guess that was just a phase. She has also started to bang her head on things when she is frustrated. Luckily she will only do it less than 5 times before she realizes it hurts and isn't getting her anywhere lol.
At the developmental evaluation over a month ago the state decided that she could benefit from some developmental for an hour once a week. We haven't been able to start this yet but hopefully it will come soon. Yesterday we were finally able to have her Occupational and Speech evaluations. It took 2 hours total. We spent 45 minutes in speech, and an hour and fifteen minutes in occupational. I was very surprised that Lily was able to do all things that I didn't realize she could do for example the ST laid a spoon and bowl on the floor, and asked Lily to feed the bear she was holding, and Lily walked over, grabbed the spoon, dipped it in the empty bowl, and then put the spoon in the bears mouth. We were floored... we had no idea she could do that lol. In occupation they got out a wooden puzzle that had different shaped pieces, she took the shapes out and mixed them all up and gave them Lily and told her to put them where they went, and Lily did it perfectly. Had no idea she could do that haha!
Long story short we didn't walk away with any real answers. I do finally feel better. What we do know is that Lily did not qualify for speech therapy or occupational therapy. Most of me is happy because of course that is great news. Another part of me was a tad disappointed bc they both agreed she is delayed for sure, just not enough for therapy and I would have loved for her to get some extra one on one help. Even if it was just for a few months. Like I said though. It is really good news. The speech therapist said that even though the humming and flapping are big red flags, and are concerning to her... she just has a really hard time believing that Lily has Autism. She just doesn't feel like she would be doing so well in day care, and be so engaged with people if she had it. She thinks its more of just a small sensory issue, but for that reason of the humming and flapping she though we should make an appointment to have her actually tested, just to get a definitive answer. The occupational therapist said the exact same thing. She said that for some reason if Lily does test positive for autism she feels like it would be one of the highest level of functioning autism that she has ever seen in her 20 years a therapist. They wanted to go ahead and make a referral to get her tested for autism now because its at least a 9 month waiting list, they said there is a really good chance that by the time the appointment rolls around we might not even need to go to it and we could cancel it. They just don't want to take the risk that 6 months from now she starts regressing or hasn't improved any and then we have to wait another nine months from that point.
Sooooo.. I mean I am very happy with everything. I'm happy to know that chances are she doesn't have it and even if she does its very high functioning. I too am now having a hard time believing that a less than 2 year old with autism wouldn't qualify at least one of the therapies of speech, occupational, or physical therapy. So for now I am just going to take a deep breath, realize the fact that she isn't even 2 yet and she still has a lot of growing and learning to do, as well as the fact that me as a parent and human being I have a lot of growing and learning left to do. I'm gonna try to stop worrying so much and just let it be. At the end of the day Lily is beautiful and wonderful. She is the best thing that has ever happened to my husband and I and for the first time in almost 10 months I am just going to enjoy everything that is her. Thank you all for your advice and opinions, and putting up with my anxiety. I am so happy that a place like this exists where we can share with each other. I will come back in 6 to 9 months whenever Lily either has or doesn't wind up having her autism/spd eval and update everyone. Have a great summer and fall!

Ev - posted on 02/14/2015

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Hi Ashley,

I have to agree with the others. Two different evals from two different places should tell you right there that she is fine and on level with most of her peers. As for the fits, it is common for a child this age to have them. THe term meltdown is not meant as the worst kind of tantrum there is. A tantrum is just what it is. Some are worse than others. At her age, again she is still developing her language skills and does not have yet the vocabulary to tell you how she feels so sometimes that tantrum is her telling how she feels. If her teeth are hurting her that much, maybe she needs to see the doctor or the dentist.

Sarah - posted on 02/14/2015

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Ashely, you need to take into consideration that your daughter had chronic ear infections and eventually had tubes placed. When kids can't hear well for a few weeks to a few months that can cause a delay in social play. That also can be the reason for the humming. If for weeks, she could not hear anything well except her own sounds in her head, she may have developed the humming habit from that time. Usually to qualify for services a child must demonstrate a 20% or greater delay. So if she is 24 months, she'd exhibit the behavior closer to a 19 month old.
Regarding the meltdowns, that seems totally normal for a child this age, that doesn't feel so hot. Whether she is still a bit sick or is teething, that is stressful for a toddler.
That constant monitoring of what your daughter does or doesn't do and when and how she plays has got to be exhausting. You've done what you can do, get an evaluation and start therapy if indicated. The Early Intervention professionals know what they are doing so why would you get another opinion? She is already getting evaluated by a behavioral, developmental, occupational and speech therapist. What more do you need? All kids do weird things. I had one who only wore elastic pants until first grade. If you put him in pants with a zipper and snap he'd flip his lid. He's 18 and is fine.

Sarah - posted on 02/14/2015

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If she is not even 2 yrs yet then I would not worry about it. At that age they can't judge social interaction yet anyway. There will be a lot of growth in the next couple of years. So really what they are saying is nothing is wrong.

Ashley - posted on 02/14/2015

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She isn't even 2 yet. She is in day care and has been since she was 6 weeks old. Gets tons of social interaction.

Sarah - posted on 02/14/2015

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Basically they are saying there is nothing wrong......she just needs social interaction. Just that she should do some play groups. My suggestion would be if she is 3 yrs old get her into a preschool.

Ashley - posted on 02/14/2015

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This whole thing is so confusing to me. Maybe it is supposed to be though. I am not quite sure where we stand right now. Lily had her Developmental Eval this morning. The lady stayed about 45 minutes. She asked lots of questions, and observed Lily. She said that she has probably done close to 300 evals and that she can usually tell a parents "yes I think they are on the spectrum" or "No there is definitely nothing wrong, I wouldn't worry about it". She said that although she isn't legally allowed to make a diagnosis, that she can normally tell. She said that after talking with me she understands why my brain hurts, and why I am so confused. She said that Lily show no signs of any extreme deficits. She said usually when she does the initial eval of a child that winds up with an autism diagnosis, that more times than not the child will ignore her completely. Of course right when she gets there Lily looks her straight in the eye and says "HI!" and waves lol. She also kept climbing up on the couch next to her and smiling at her. She said Lily seems to want to be social, very interested in her environment, has no issues with schedule change, and no extreme sensory issues which are all positive, however, there are several red flags that do worry her. The arm flapping, the excessive humming, and the fact that even though Lily shows joint communication through showing up toys and bringing us things when she needs help, she sees a definite lack of back and forth communicating that Lily should be doing at this point. Pretty much no attempt to try and carry on back and forth communication. She said that Lily is definitely different personality wise than her peers, but not so much that it would be recognizable to the every day person. Since Lily shows no signs of significant deficits in any area, she is suggesting 60 minutes a week of developmental therapy to start off. She wants to go ahead and do a speech evaluation (which they initially weren't gonna do) because she thinks speech therapy will help with the back and forth communications, as well as maybe the humming. Lily is scheduled for an Occupational Evaluation, but she isn't sure that Occupational Therapy will help her in anyway since she doesn't seem to have any major issues that effect her day to day living.
I feel like I am walking away more confused than I was. I am so happy that she did not leave saying "Yes, I definitely think that your child is on the spectrum", so I am taking that as a positive, at least for now. Does all of this sound right to you guys? Should I get a second opinion? Or should I just go with it and let Lily start her therapy and see how it goes from there? Happy Valentines Day everyone, hope it is nice for all of you!

Ashley - posted on 02/03/2015

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Okay so here is an update and maybe a little advice needed. I can officially say that ever since the case manager came out I am calmed down a lot. I think in my head I was very stressed because I wasn't sure if I was doing the right thing by contacting early intervention. Now having done it I feel a lot better. I am not constantly diagnosing my daughter in my head, instead just letting her be herself. I definitely feel as though at the least there are some sensory issues there. She Arm Flaps, hand wrings, hums, light toe walking when excited. I am not saying that Autism doesn't still float around in the back of my mind... it does, but I am hoping for the best. She has moments where things in certain areas get worse and then other things get better all at the same time. The communication is as good as ever and is improving, the only thing she ever lacked communication wise was calling people by name... she knows what different object are, but she has started to point at her grandpa and say "pa pa" and at her daddy and say "daddy" still trying to get her to call me mama, but I figure its only a matter of time.
My question is what is considered a normal toddler tantrum, and when does it cross the line into meltdown? Our normally sweet little Lily hasn't been so sweet as of late. She has been sick (runny nose, cough, low fever, and throwing up) off and on the past few weeks, and on top of that she is teething again. Her first 8 teeth (the 4 center ones on the top and bottom) didn't seem to bother her when she got them at 14 months. These past few days have been a doosy. My husband who has been adamant that there is nothing wrong is even starting to raise an eyebrow with these meltdowns she has been having. Sunday afternoon after her nap she could not be consoled. High Pitch screaming, crying, slapping at everyone and every thing and this went on for an hour. She didn't have a fever and had stopped throwing up yesterday so we took her to daycare, the daycare said that she cried most of the morning, but then calmed down, however was cranky the rest of the day. Last night she was fine until bath time. Normally she loves her bath and even acted like she wanted it. Until my husband put her in. She started thrashing, arching her back, screaming, crying, slapping us and herself, and won't look at us most of the time. She wouldn't let us read to her, or hold her. This went on for over 30 minutes to the point we finally just put her in her crib to go to sleep. She was upset for a while, and then got quiet. An hour later she was up screaming bloody murder again, so I went and got her and rocked her. She enjoyed this, she laid there curled up on me, listening to me sing, and every time I would get done with a song she would say "sing" so I would sing more. She then went down for the rest of the night until 6 o'clock. This morning Josh dropped her off at daycare and she threw another enormous tantrum... flailing, kicking, screaming, and crying... he said he almost didn't leave her there because he was so embarrassed and that he has never seen another child act that way. We see kids cry when being dropped off, but to go into this full blown out, can't be consoled mode is just almost more than anyone can handle. I called the daycare an hour after drop off to check and make sure she had calmed down and they said that she had. We have tried everything for the teething. Cold foods (she won't eat Popsicle s) we keep her on Tylenol and Motrin. Give her things to chew on. Is this a normal reaction to teething? Is there something else we can do? When does tantrums go from normal to problematic? Please don't chastise me for this question. I am not asking if my child has autism or if these are symptoms of autism, as usual I have calmed down on that end. I just need advice.
As for Lily's EI. It has been 2 and a half weeks since I talked with them and we haven't heard anything back about any appointments. She did tell us it would be at least 2 weeks so I am just hoping to hear something back soon, I'm ready to get the ball rolling.

Ashley - posted on 01/16/2015

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The Early Intervention case manager came out to our house today. They only wanted to talk to me and my husband, and did not want Lily there. She basically is the person who asked tons of questions, filled out a bunch of information, and then decided what different evaluations Lily qualified for. She was there for almost 2 hours and I think will probably tell anyone who is gonna come in contact with me that I am researching psycho lol.
Basically what it came down to is that Lily does not qualify for a physical or speech evaluation. They are gonna give her a developmental evaluation which she said they do regardless, and then she wanted to go ahead and do an occupational evaluation because of the moaning/humming, and arm flapping. Her exact words were "I'm not a therapist or doctor, and I have never met Lily, but based off of what you are telling me if I was leaning in any way of any kind of diagnosis it would be more on the sensory side". She said she isn't even sure of that one because Lily doesn't exhibit anything extreme sensory wise. She told me to not expect to hear anything for a least 2 weeks, but it will probably be longer than that, and then at that point we can set up her evals. It was all mostly positive, and I can tell you all now that I was able to take a deep breath at the end of it. I know that we are not out of the woods yet, and that they haven't met Lily yet and all of that. The good news is I will definitely sleep a little better tonight knowing that it was a positive experience, and that I am taking steps in the right directions.

Ashley - posted on 01/13/2015

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hahaha I'm so sorry guys. Please don't feel the need to respond to everything I post. I mean since I put it on here you are more than welcome, Part of me just has my mini freak out moments and I get on here to vent. Maybe I should stop that. I already have an appointment with my Ob/Gyn on the 21st of this month. I will talk to her about it then and see where she might want to go from there. Sarah I am worried about that too. Only because I have heard and read where their kids don't get diagnosed and then years later when they go to start school the problems become more obvious and then they are trying to start all of this at a more difficult age.
They had to cancel my appointment for Thursday and now I am more confused than ever. When I made the appointment I asked the lady what to expectt, and they told me she would come out and spend about an hour with Lily and I. Well she had to cancel Thursday and then reschedule for Friday, and when I told her that I could not take off on Friday she said it was no big deal, Lily doesn't even have to be there, she just needs to visit with me for a while and that she could meet me on my lunch break. So who knows what that is all about. Maybe they want to run through some questions like I originally thought they would.
Lily had a good night last night. When her daddy brought her through the door I asked for 3 things, a high five which she did, a hug.. which she did her version.. no arms around the neck but puts her head in my neck and nuzzles, and a kiss which she gave me on the cheek. We ate, sang, and played for about and hour and a half and then it was bed time. Her eye contact, and interaction were really good and we had a fun evening. I'm ready for Friday though.

Sarah - posted on 01/13/2015

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I am worried that even if the evaluation goes smoothly and your daughter in found to be with the normal limits for her age, you will be unconvinced. You seem intent on her having a diagnosis. If the therapists that see you child tell you she is fine, will you accept that? Or will you pick apart the evaluation and convince yourself that they missed something, or she did not exhibit the worrisome behaviors like she typically does?
I bring this up after you post about the pinwheel her grandpa has in his garden. What child wouldn't be fascinated by something so pretty? When describing true perseverative behavior, the child will repeat the action (spinning a wheel of a small toy car, flicking a light switch, engaging and disengaging the deadbolt of an open door) the behavior is repeated hundreds and hundreds of times to the exclusion of all other stimulus. Also, you daughter was interested in the spinning pinwheel as that it the purpose of the item. Whereas, kids with spectrum disorders tend to focus on one small part of a toy rather than the function of the toy itself.

Ev - posted on 01/13/2015

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Ashley, I have read the posts here and have kept up and I think that you need to quit finding things that make your daughter seem like she has an issue. The spinning of certain types of objects is normal for kids at this age doing it in the fashion your daughter is. That does not mean she is high functioning or on another spectrum. Calm down and wait to see if she has any issues first before talking about long term things like therapies and her future. You do not know as yet what is going to happen.

Ashley - posted on 01/12/2015

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Yea if it weren't for the humming I wouldn't even be super worried, except the part where she can be completely in her own world at times. I am also aware that she is a toddler and might put us on ignore lol. I have noticed that she actually behaves better when we are places outside the home. I think at home she is just bored and over it lol. She does like to spin stuff. But she is not obsessed with it. And it is only certain things. Like the wheels on her little cars and stuff she could care less about. There are toys that have spinny things on them and she doesn't care about those either. But her grandpa has one of those garden flower things that spins in the wind and she loves that thing. She will spin it over and over. That kind of bothers me because she will do it over and over for a long time. Not for hours or anything, but repeatedly. Like I've said before I do realize that even if there was a problem it probably won't be anything major. At worst I would think she would be leveled High functioning. She is pretty great now, so hopefully the therapies she would receive would improve her that much more, and she might even have a normal childhood/adulthood and be mainstreamed in school and what not. I mean she walks, talks, feeds herself, and communicates pretty good, makes pretty good eye contact and seems genuinely interested in people, and doesn't seem to have any issues with change.... so I don't even know why I'm freaking out in the first place lol. As my husband says... it is what it is... we will make her the best self she can be.

Sarah - posted on 01/10/2015

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Now it makes sense that no two people with spectrum diagnosis are alike. True. I think you have found the answer to your most troubling issue, the humming. I though it odd the she started at 3 months. If her ears were full for many months it makes sense she would create sound she could hear. If she currently seems to have a speech delay, that too, could be from her hearing being compromised for such a long time. I evaluation will include an extensive health history, so be sure you know the dates of her procedures etc.
My niece and nephew are 13 and 16 and are much better socially than they were when they were little. They both still are in behavioral therapy but have made great strides.

Ashley - posted on 01/10/2015

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I'm sorry I was not clear. That seems to be the ongoing saying in the world of autism. You did not say that quote. People use it to try and make clear that autism isn't just a clear cut set of problems, and just because you knew one person with autism that was one way... you could meet one that has it that is completely different.
Yea I get where you are coming from with having been around autistic kids and knowing there is something wrong. However, I have been around older autistic kids/adults and you would have never known they were such. Although I am sure that they are that way because they have learned to cope with their issues, and were probably not that way at 21 months, and there is a lot more to them that I am just not seeing.
I have been around two different people with autism in my life. My cousin (not by blood by marriage) has moderate to severe autism. He didn't talk until the age of 5. At family dinners he usually sits in a chair in the corner and doesn't speak to anyone unless you speak to him. He is a sweet kid though, very nice, and can tell you absolutely anything you want to know about video games or how computers work. He will make eye contact if you say hi to him but it is very brief. He does feed himself and takes care of himself pretty easily and has no issues talking when he wants to. But you can tell after only meeting him for a minute that he has autism.
The second person I have been around but not as much is a co-workers 10 year old son who has Aspergers. He is in Mainstream school, although I'm not sure he should be because of behavioral issues, and I have been around in him 30 minute increments and he seems mostly normal other than he isn't extremely social with people he doesn't know. But a lot of kids aren't social with those they don't know.
That is the extent of my experience with an ASD. Very limited.
Yes Lily had horrible fluid in her ears, she had it for a long time, and I just had no idea that we were supposed to do something about it... her pediatrician at the time (who she no long goes to now) never said a word about tubes or anything like that. We know for a fact she had the fluid at 7 months, and didn't get the tubes until 16 months, so I don't think that she was hearing things properly from the time she was very little. The humming could definitely have came from that.
As I said before... Lily gets better every day. Learns new things, and surprises us constantly. As long as the progress moves forward I am happy. Maybe she is just a quirky little personality. Who knows lol.

Sarah - posted on 01/10/2015

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I was the person who asked you:
I have a question for you, have you ever seen or spent time with an autistic child, or even a child with Asperger's Syndrome? I think if you did, you would have prevented yourself a whole lot of worry.
I ask this because if you have spent time with children that are on the spectrum, you'd realize they have such obvious issues and behaviors. If you have actually watched an autistic child, rock, hum and hand flap you'd know your daughter (based on your descriptions) does not meet criteria. I have a niece and nephew that are siblings and are both are on the spectrum. The lack of eye contact, perseverative behaviors, inability to make friends and follow directions, sensitivity to texture, touching and sounds and frustration issues have been there since they were very little. There is a huge degree of variance in PDD kids, but to be diagnosed with even a potential spectrum disorder, your daughter would exhibit at least 7-8 behaviors most of the time. Not 2-3 occasionally.
I don't know what you mean by "if you have met one person with autism, then you have met one person with autism". I did not say that.
Also, I think I read all of the posts and I missed the tubes in your daughter's ears in her history. If she had a time where her ears were congested, she may have hummed to herself because she could hear herself. It may have become a habit after that.

Ashley - posted on 01/10/2015

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At the risk of making everyone mad by asking more questions, I'm going to anyway simply to educate myself. First of all an update on Lily for the past few days.
She is still doing well in the toddler room. Some mornings she cries when I drop her off. Actually she cried 3 of the 5 mornings I dropped her off, but they say she gets over it quickly within a few minutes and then she is fine the rest of the day. I have finally got her to start trying to give her stuffed animals a drink. She will not do it on her own, but if she is drinking her milk and I grab one and move its head like its talking and say "can I have some?" she will put the milk in its mouth and giggle. Not sure if that counts, but its a step in the right direction. She has also finally started to point at things in books. She has always loved to be read to, and sometimes will point to things in books, and feel the animals fur and what not, but this week I have seen a change in her while we are reading. Without me asking she will point to a dog and say "dog" and then "woof" and then point to the elephant, she can't say elephant yet, but she makes the elephant noise and the same with the lion. She will point to the stars and hearts and say them by name as well. She will also point to the color green and say "reen" This is every time we read now. I have been working on teaching her to point to things when I ask where they are... this part is very inconsistent for her right now. There was one night she basically put her hand on everything I asked, 1 night where she did it sometimes, and then last night she would point to things on her own, but never when I asked lol. Pretty sure this is just the toddler in her. Last but certainly not least some things have gotten better.... the arm flapping has died down quite a bit. Make no mistake she still does it, but not as bad. The humming/moaning is still just has present as always. The toe walking is less than it was as well, and the tilting her head up and shifting her eyes down and shaking something only happens once a day if that. Out of all of these the humming/moaning is the one I really wish she would let go of. She has done it since 3 months old... can't remember one meal where it was quiet. It gets old after a while.
Once again we have an appointment with her ENT on Thursday the 15th to have a hearing test done and make sure her tubes are still in there.
All of that having been said here is my question. As I said in the beginning of this now unintentionally long post I am just trying to educate myself... no one is freaking out on this side of the computer lol. Someone in a previous reply said "If you would have ever been around someone with autism I think you could have saved yourself a lot of stress" Now I know that is not exactly how it was said, but you get the picture. My question is.. I thought that was why autism was a spectrum disorder and why you carry around the quote "if you have met one person with autism, then you have met one person with autism".

♫ Shawnn ♪♫♫ - posted on 01/07/2015

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Sarah, I've got one that (even at 17) will strip down to nothing to sleep in subzero weather (inside of course!) and one that (at 21) will swaddle himself even in the most sweltering weather!

And these 'kids' are grown! LOL

Sarah - posted on 01/07/2015

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Amen! I live in an area where it gets very cold at night. I would find my daughter at 18 months stripped naked in bed at night. It's like she'd get bored so she'd take off her clothing, fall asleep, and then I'd find her naked!
Shawnn is right, you do not have to "teach" her how to undo velcro, or undress herself. If she wanted to she probably could, she just is not interested in undressing...yet!

♫ Shawnn ♪♫♫ - posted on 01/07/2015

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The key is "be ABLE" She demonstrated ability by undoing the velcro. It didn't hold her interest, so she didn't try again. ;-) Look at it this way, at least you don't have the kid who likes to tear off their clothes and go screaming down the street buck naked! LOL

Ashley - posted on 01/07/2015

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So I have a quick question. I received a letter in the mail earlier from our EI program with a confirmation of our eval date, and then a pamphlet that says.. Most 3 month olds will be able to do this... Most 6 month olds will be able to do this... and with each one it lists 2 things about speech, two physical things, and I guess two other things. A total of 6 different things for each one. I realize it says "MOST" because not all will be able to do it. The other difficult part is that Lily is in the middle of those and a lot can change in the 3 and a half months she has until 2 so I decided to go off of the 18 month one and if she can do those then that is great. I noticed only 1 thing out of the 6 that she cannot do and had never shown interest in.. don't worry... it did not freak me out.. I am just wondering how to try and teach her to do it. It said that Most 18 month old toddlers will be able to remove clothing that is easily removable such as shoes. She used to un-Velcro them a while back, but never actually tried to remove the shoes herself. She does not to this day attempt to remove any clothing. How do I teach her to do this when she shows no interest in it?

Ashley - posted on 01/06/2015

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Thank you.. My husband was Military as well as now Law Enforcement. I have always had a bit of anxiety, however, I did notice that it seemed to get worse while he was deployed 6 years ago. Its like I was so stressed and anxious about him that it relayed into other parts of my life. I got to where I was anxious about everything. All of this is another reason I am worried about her needing all kinds of therapies and what not, I know we would make it through but I feel as though I would have to do the bulk of it on my own with his schedule the way it is. Anyway... despite how it may come off I really do appreciate everything you guys are saying and your attempts to not only reason with me but to calm my nerves. It does help. I only hope that I can come back here after next week and update with something positive.

♫ Shawnn ♪♫♫ - posted on 01/06/2015

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I do have to say that wives of first responders, military, etc, have my utmost respect. I cannot imagine the terror that washes over you at times, Ashley!

Please, do speak with your physician. You cannot handle this level of anxiety for long before it starts to affect other parts of your life! Hey, BTW...you are as "normal" as a parent can be in this regard, worrying about your LO and anxious about her development, etc. Please hang in there!

Ashley - posted on 01/06/2015

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I can't explain it... Its like you have said. I have convinced myself that she is autistic, and there is no other way around that. She is and that is that. The sad part is that at the same time I understand that even if she is, it doesn't change who she is right now, she is already this advanced, and there is no telling where she could be with some therapy. It is not a death sentence by any means. I think its the struggle of not knowing that kills me. I feel like if I found out she was or if it was extremely obvious that she was I could and would have already accepted it and moved forward. She is just so close to neuro typical that my hopes are so high for her that she will be fine, and am afraid of those hopes getting dashed. Like I said.. I am just ready to get this eval over with and move on with my life. I'm hoping for the best.

Sarah - posted on 01/06/2015

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There comes a point where you just can't fake it, and I think you are there already. You are a nursing student, so have you learned about projection? Where you worry so much about something you start to transfer those negative thoughts to fit someone, in your case, Lily? You list a dozen typical positive skills, tell us you think she is fine and then pick out her typical negative behaviors and create a diagnosis in you head. After that point every move she makes you are unintentionally categorizing as possibly a symptom. You do it to your husband too, if he does not respond, you are unable to control your thoughts and tell yourself; "he is on a call, in the bathroom, driving his squad car", instead you believe the worst. You even get out of bed and start checking the news. Every mother worries about her kids. Your worries have consumed your life. Kids, babies especially are like tuning forks for our emotions. Lily knows your stressed, it makes her stressed and perhaps her waves her hands to relieve that stress. I am NOT saying this is your fault. I am saying you need to seek out a solution. If you decline medication, then behavior modification, relaxation techniques, meditation and even talk therapy may help you relax and enjoy you little girl.

Ashley - posted on 01/06/2015

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I am. I haven't slept well in almost 6 months... I've put on 20 pounds.... its causing my marriage to suffer. My husband is wonderful and such a trooper, but I know my constant stressed out nature with the stressful nature of his job is putting a lot on him. I try my best not to every and I mean EVER take my stress out on Lily. And by that I mean I always try to slap on a smile, and never let on in front of her that I am upset or having issues, but I know that the way I feel still isn't healthy.

Sarah - posted on 01/06/2015

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I finally went back an read your posts, all of them....girl you must be exhausted from worrying! You seem to acknowledge you are abnormally anxious about your daughter, who, from every description you give, is probably perfectly within normal limits.
I have a question for you, have you ever seen or spent time with an autistic child, or even a child with Asperger's Syndrome? I think if you did, you would have prevented yourself a whole lot of worry.
You have an anxiety disorder, Ashley, and you either need to learn to modify your behavior or try an anti-anxiety (not a tranquilizer) medication. You are in a state of constant worry about terrible things happening to the ones you love. That is no way to live. It no way to raise your child, under the constant scrutiny that there may be something wrong with her.
I am not trying to be critical, just frank. I think many of the other mothers have said the same thing. If you could be free of this burden, wouldn't you want too?

♫ Shawnn ♪♫♫ - posted on 01/06/2015

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Start with your GP and go from there. You have a very high level of anxiety that could be detrimental, and sounds like it already may be.

There are more ways than pills to take care of chemical imbalances, and you don't even know if you'll need a prescription until you speak with your physician and a therapist if recommended.

You also need to remember that your daughter isn't even 2 yet. Humming, etc, is quite normal for them at that age. Excitement for completing a task is normal, and may come across as 'flapping' to you. Playing and you not being able to get her attention...again, age appropriate 'normal'. Not following directions...

You, yourself are seeing that it is normal behaviour in other toddlers, but anxious that yours may have a condition. Get the evaluation done for her, and get yourself some evaluation as well. I'm concerned that you may be causing yourself other health problems with all of this anxiety.

Ashley - posted on 01/06/2015

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Evaluation for what and with what kind of therapist? This is a legit question. Or should I just talk with my doctor in a few weeks when I go in. I refuse to take pills. My extended family has a history of pill popping addictions.. my husband is a police officer and doesn't want me on any medication.
I am the same way with him by the way. I can't help my nerves... especially when he is on night shift. If I text him.. which I try not to, but if I do and don't hear back within an hour or two then I go all crazy and think he is dead. I will start searching news sites to see if there have been any reporting of a police officer being hurt or injured. Its like there is no black or white for me. As much as I want to stay calm and I try not to think about it I can't. Same with Lily. I try not to think about it... but she is right there in front of me arm flapping, or humming/moaning through our entire dinner to the point that I can't even eat because it is so obnoxious, or she is playing before bed and I can't get her attention and she is running back and forth in what seems to me a repetitive manner or won't follow my directions when I ask her to do something... when those things happen, which aren't all the time.. it really depends on the time of day and her mood, I just can't help but wonder. I know toddlers can flap their hands, they don't listen a lot of the time, and can be loud. I know they can put you on ignore. But when I see all of those things rolled into one night I walk away from putting her to bed feeling discouraged. I don't mean to... I just do.

Sarah - posted on 01/06/2015

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Prepare for that day by making sure she gets sleep the night before, gets a good breakfast and lunch. Put her down for her nap early so she has a chance to wake up and get herself settled. The people who evaluate deal with kids all of the time. They may want you there or they may ask you to sit apart from her. You can expect them to engage her in play activities and to solicit speech from her. At the evaluation, you can expect to give a full health history for your child. It may seem like the evaluator is talking to you and not checking out your daughter, they know hat they are doing and can learn a lot just watching your child.

Ashley - posted on 01/06/2015

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I just figured before they drove all the way to my house they would want to know something, anything, at all about her. I'm happy they are doing this, I just always heard that they usually conduct an interview with parents first. I wonder what that hour will be like. You never know with Lily... it is right after her nap so she could be in a great mood, or she could be in a cranky, I don't want to have anything to do with you mood lol.

♫ Shawnn ♪♫♫ - posted on 01/06/2015

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I would say that an evaluation for you, yourself, isn't a bad idea, ashley. Good luck

Sarah - posted on 01/06/2015

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Isn't this what you expected to happen. If you contact Early Interventions, they have to do a parent requested evaluation.

Ashley - posted on 01/06/2015

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Talked to the Evaluation people today. Was kind of shocked. I figured they would want to ask me some questions to see if coming out was even worth their time, but she just scheduled an appointment to come out in 10 days and said expect it to take about an hour. Happy its done.

Ashley - posted on 01/05/2015

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Might not be such a bad idea. My aunt said she thinks I have just convinced myself that there is something wrong and can't see it any other way. She said she is afraid that even if they evaluate her and say nothing is wrong that I won't believe them. I have my yearly check up with my doctor at the end of this month, I will discuss it with her.

Sarah - posted on 01/05/2015

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Ashley maybe you may want to talk to your doc about your anxiety and have an evaluation done on you. I am not for directing people to medication or even doctors as many are quick to medicate for normal behaviors and emotions, but from your posts I really think you may need some help either counseling/therapy wise or medication wise.

Ashley - posted on 01/05/2015

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You are right. I have turned this into my own personal nightmare. I can't hardly eat, sleep, or breath. I suffer from bad anxiety. Should probably be medicated. I try to not think about it and then she will do something weird and my mind starts racing. Her communication skills get better and better. When I picked her up at daycare they have 2 fake trees in there and she pointed at one and said "tree!" And then pointed at the other and said "tree!" And then Tonight she grabbed her sippy cup and brought it to the kitchen while I was cooking and said "juice?". She was also snacking and would say "bite?" When she wanted more. Things like that help me breath easier. But then she will be playing and I have a super hard time getting her attention and it scares me again. I know I will always worry about my kids but this is one roller coaster ride I hope to get off soon. I'm mentally exhausted.

♫ Shawnn ♪♫♫ - posted on 01/05/2015

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Ashley, you are taking normal toddler behaviours and turning them into your own personal nightmare.

A lot of us answering you have and do work with children daily. Some of these children are on the spectrum, some are not. Some are special needs. Some are not.

Your child, at 20 months, from the behaviours and actions that you have described, is normal.

As far as what happens in testing, Evelyn has shared what she's witnessed. All I can add is that in order to have your specific questions addressed, you should be asking the folks who will be doing the testing.

Ev - posted on 01/05/2015

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I worked with special needs kids in a preschool set up. When a family had a child come in to be evaluated they were tested by therapists and certified teachers. After that they would go over the results and see where the child qualified or did not. If the child qualified in just barely enough of things, they could get to come to the preschool. If they qualified in more then they got more help depending on what the needs were. For those that did not qualify, they did not get any help as they did not need it. As for other organizations that do this, I can not tell you what they will do or not do. I do not know. No one on here would know.

To answer some questions from my experience:

They do have certain activities they have the kids do but they won't tell you them so you can have your kid do them before hand because it might make the results of the testing wrong.

Not sure on observations.

They do not label the kids as say autistic because unless they are a doctor they can not do that. Only a doctor can say if a child is autistic or not or if the child goes to an outside center that tests specific for that.

They will put the child in therapies if they need it. But only if they do.

I may not know your child but all the things you say she does are normal behavior. But I have also worked with special needs kids too. I have seen a lot of different things that kids have to deal with developmentally. The flapping and such is done by lots of children but that does not make them autistic. And just because someone has red flags for something does not mean they have it.

Ashley - posted on 01/05/2015

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I do realize that I have to wait. No one is explaining to me what happens with or in evaluations. Do they usually start small and send someone to your house, or do they just go all in and have you come out and do the 2 - 5 hour eval there. Do they do certain activities with your child that maybe I can introduce her too so that when we are there it won't be the first time she has done them, or do they just watch them interact with you? Do they label kids as young as her or will they put her in any therapies needed and re-evaluate later? I saw a documentary where they noticed a child had red flags for autism at 15 months, however, they did not diagnose him at that point, they waited until he was 2 and at that point he had lost a lot of those red flags.
I understand everyone here thinks that I am over thinking this and that there is nothing wrong with my child, so they don't want to waste their time answering my question. At the same time none of you have met her so you can't possibly know that she is normal, and these may be things I need to know.

Ev - posted on 01/05/2015

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Ashley,

It may not be the same exact post but its about the same thing. So you called and gave them information about your daughter and they told you a week or so to hear back. Then you have to wait. The government works slow and at their own pace and you have to hurry up and wait.

As for what we told you in the other posts, she sounds normal. I suggested evals to clear your mind.

I still think that you are looking for something wrong with your child that is not there.

Ashley - posted on 01/05/2015

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This is not the exact same post. The first post asked if I should have my child evaluated. This post gives a very shortened summary of what the first post did so that whoever reads it will know a bit about my daughter and then asks the question of what to expect throughout the evaluation process. Or if they will even look at her in the first place.

♫ Shawnn ♪♫♫ - posted on 01/05/2015

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Ashley,

This is the exact same post as you've had responses to. What are you looking for?

It doesn't sound as if your child is any different than any other child her age, and she's meeting milestones, interacting well with others, and following directions (age appropriately).

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