UPDATED! Think 2-year-old may be on the Spectrum but too scared to find out :( - Mothering Forums
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#1 of 92 Old 06-17-2011, 08:19 AM - Thread Starter
 
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My 2-year-old has many weird behaviors. He is very affectionate with family members he knows, but not at ALL with family he doesn't know, or strangers. He toe-walks, head-bangs (usually in his crib when trying to get to sleep), body rocks, has a definite language delay (has a few words that he repeats), will pull us to what he wants (grab our hands and pull us to the fridge if he wants some juice, etc), he understands language much better than he speaks because he will respond and seems to know what we're talking about maybe half of the time. He has bad tantrums (but is not aggressive, he just cries and throws himself on the floor etc) about "stupid" things, will cry hysterically over "stupid" things like his fav show ending (he doesn't watch tv all the time but we let him watch his "Yo Gabba Gabba" sometimes), he LOVES music, even classical music - we taped Classical Baby on HBO and he will sit entranced OR he will "dance" like the cartoon characters, or spin, etc.

 

He does do some pretend play (like he'll make his stuffed tiger "dance" on it's legs to music), and will play with cars etc but doesn't pretend play with his older brother. He seems to know when dh or I are joking/playing around with him and will laugh accordingly (if we are tickling or being silly, or if dh is trying to get DS to chase him, he will chase him). He doesn't line things up but likes to spin toys or objects all the time. I looked at the Childbrain PPD assessment and most of the issues he has mildly. When it comes to things like calling his name or eye contact, it's hit or miss. Sometimes it's like he's deaf or ignoring, others he comes to us right away. His eye contact is sometimes good but many times not. It's almost impossible to get him to look at the camera for a picture these days even though as a baby and toddler he did it without problem.

 

He only just turned 2 a few months ago, just for reference. Sometimes he seems to be in his own world, and other times he loves to play and chase his older brother around. He has walked up to his baby brother and patted him on the head. He speaks in gibberish ALL THE TIME, nonstop. Now he also seems very bright, even our pediatrician made a comment when he was a baby that he was extremely bright, by the things we was doing at his well-baby appt. He loves to sit and look at books by himself, he will literally have 20 books on the floor around him, and he will sit and look at each picture. He constantly wants to be held by dh and I, and so no problem with affection. But the tantrums are ridiculous- although they stop immediately if he gets his way. He also has inappropriate and excessive laughing about stuff that normal people won't find funny. He can imitate and does show joy when Daddy gets home from work (wants to be picked up immediately and is all smiles).

 

He does not do any hand-flapping, but for months and months has been sticking his fingers in his ears and shaking them, like you would do if you had water in your ears. We have been concerned that maybe he had an ear infection (was ruled out multiple times) or fluid behind the ears (that was recently ruled out by an ENT), because he would do this mostly right after waking up from his naps or in the morning and is sometimes accompanied by crying. We have given him baby Motrin before when he did this and the crying stopped, so we assumed he was/is in pain. But now after reading the Childbrain checklist I am starting to wonder if something isn't wrong with his ears and rather this is just something he is doing?? We are going to get a 2nd opinion from another ENT just to be really sure. When we went to the ENT the other day he was absolutely hysterical the entire time we were there, it was as if someone was beating him or something! They checked his ears (but it was a quick check), we went in the hearing booth (they said he passed but from my pov he didn't seem to respond as much when sounds came from the right side, but I don't know if the girl conducting the test saw), and they used an instrument to blow air in his ears, they said he passed that too. He was throwing such a fit though that I wonder if they weren't just trying to hurry up and get us out of there?

 

I know I should probably get him evaluated but the truth is I'm SCARED! I don't want a label slapped on him. When my older DS was a toddler he had a minor speech delay (without all of the issues my 2nd son has- my older DS was totally "normal"). I had early intervention come out and they treated him like he was mentally challenged, to put it politely. I pulled him out of the program because I feared a label being put on him. They tried to pressure me into keeping him in the program, a program which didn't even help him (the supposed speech therapist spent all her time having me fill out paperwork, rather than working with him). As soon as we put him in preschool and blossomed!!! His speech is perfect now (although he has a bit of a lisp), and his teacher said he was one of the brightest kids in the class, and the MOST well-behaved (even moreso than any of the girls!!). She did say he takes his assignments very seriously though, more seriously than most kids his age. But his personality is totally different than DS2. DS1 is a very gentle, quiet, kind and sensitive boy- very passive (even girls in his class have pushed him around). He never had tantrums or any behavior issues, he was the type of kid that even as a baby and toddler we could take him to restaurants and events and he would sit there like a perfect angel.... we can't take DS2 anywhere!! :( There are some places DS2 does well at, like the playground or play area at the mall, the local splash water park etc (although dh said when he took them to the splash park DS2 cried and acted scared for like 10 minutes, didn't want to be put down but when finally put down he had a blast).

 

I don't know what to think but have a nagging feeling something is "off". He seemed 100% "normal" during his babyhood, surpassing each and every milestone on time or early! All of this weirdness just started right before his 2nd birthday. Also, 2 months before his 2nd birthday he started waking up in the middle of the night and shaking his crib, and still does this. Before that he would sleep 7-7, no problem. I'm at a loss and it has taken a lot of courage to make myself look at ASD checklists and boards because I'm just so terrified. Moms of ASD or Aspergers kids, as well as moms whose kids were thought to be on the spectrum but aren't, should I be worried? What about the label issue? Please help!


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#2 of 92 Old 06-17-2011, 10:00 AM
 
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My son is moderate - severe on the spectrum, and he's intelligent, affectionate, and shows interest in his favorite activities.

 

I'm NOT saying that your guy is on the spectrum (only an evaluation will tell), but that's the thing... autism is a spectrum and it effects every person differently.

 

Please have him evaluated. I completely understand it's a scary process, but if he has ASD he needs services now. Early intervention can make a world of difference for these kiddos.

 

Autism is not a death sentence, and many go on to live happy, productive lives. smile.gif


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#3 of 92 Old 06-17-2011, 10:32 AM
 
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My DD has Asperger's. She's 14 and she is also gifted. Rather than focus on the autism/ not autism question (which can be hard to answer at that age) I'd look at what he needs help with and get help for those things.

 

How is his speech? Is he a candidate for speech therapy?

 

Does he have sensory issues? Incorporating ideas from "The Out of Sync Child" was more helpful to my DD at that age that just about anything else.

 

Labels can be good. They make services available and help us communicate with others. My DD knows her label and she understands what it means. She knows that she is completely normal for someone with Asperger's.

 

A book that I really like is "Quirky Kids" by Klass. It deals with PDD-NOS, Asperger's, Sensory Processing Disorder and some other issues.

 

Since you had a less than positive experience with EI, do you have private insurance? You can get an eval done privately.

 

Your question seems to be: "I think my kid has X, should I get them labeled with it?" 

 

But the truth is that right now you don't have any way of knowing what is going on with your child, he may have something going on that you've never even heard of. You don't have the education or experience to diagnose these issues. So I think a better question would be:  "should I have my child seen by someone with specialized training and experience to help me sort out what is going on with my child so that I can make their day to day like more pleasant for them and help them reach their full potential?" 

 

Evaluations are often helpful. Any labels given don't change who your child is, and evaluations, sadly, don't offer magic solutions. They can sometimes point us in the direction that makes sense to go. They can give up a map to navigate the next steps in parenting our child, rather than just floundering around lost.

 

(BTW, my DD, who is CLEARLY on the spectrum, pretend played as a toddler and has a sense of humor. She's also a wonderful human being who likes working in the green house at her school and is volunteering in our public library this summer! I am so proud of her! )


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#4 of 92 Old 06-17-2011, 11:31 AM - Thread Starter
 
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Quote:
Originally Posted by IxIa View Post

My son is moderate - severe on the spectrum, and he's intelligent, affectionate, and shows interest in his favorite activities.

 

I'm NOT saying that your guy is on the spectrum (only an evaluation will tell), but that's the thing... autism is a spectrum and it effects every person differently.

 

Please have him evaluated. I completely understand it's a scary process, but if he has ASD he needs services now. Early intervention can make a world of difference for these kiddos.

 

Autism is not a death sentence, and many go on to live happy, productive lives. smile.gif


Thanks for this!!! Does or did your son have the same behaviors that mine does? Does early intervention really made a big difference? The coward in me wants to put off an eval until he's older but if it will only get worse, I won't delay it. Just so scared! guilty.gif

 


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#5 of 92 Old 06-17-2011, 11:42 AM - Thread Starter
 
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Quote:
Originally Posted by Linda on the move View Post

 

How is his speech? Is he a candidate for speech therapy?

 

Does he have sensory issues?


His speech isn't good at all, he's definitely behind. He literally has a few catch phrases that he says, even though he seems to understand a lot of what we say and respond to it. He also speaks in gibberish 95% of the time.  He doesn't seem to have sensory issues if you mean that he doesn't like the way certain things feel or loud noises, etc... but he does get a LOT of anxiety when there are a lot of people around.

 

I do have private insurance; a good friend of mine whose son has Asperger's recommended that I get an eval at Kennedy-Krieger at John's Hopkins, which is not far from us. I've looked on their site but am too scared to make the call. DS2 has his 2-year well visit at the ped next week, I will discuss it all with the ped and try to get up the nerve to make the appt for an eval from there.

 

What you said makes a lot of sense, and is a good way of looking at it! That's so great your dd is doing so wonderfully (and your son, Ixla!)! :) :)

 

This is off-topic, but DS2 hasn't had his MMR vaccine yet. DS1 had his on time, but we are doing selective-delayed schedule with DS2. Should we even get it???? If he is showing signs of ASD would it be dangerous for him to get it? I know it's a hotly debated topic. I would just skip it completely but I worry about mumps and sterility. <sigh> What did you do???

 

 


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#6 of 92 Old 06-17-2011, 12:35 PM
 
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I'd call and find out how long the wait list is for an eval. Even if you don't want to do the eval right now, it's a good idea to find out how long it takes to get in where you want to go. In some places, the wait is very long. Getting your name on that list gives you the option of having an eval when your turn comes, or letting the slot slide to the next person in line if your son seems to be catching up.

 

I'd also start the wheels turning for speech therapy, which you can do privately and doesn't require an dx of anything. Check with your insurance company and find out how they cover it, any hoops you need to jump through, etc.

 

I've no opinion on the MMR. redface.gif


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#7 of 92 Old 06-17-2011, 06:18 PM
 
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I would get him evaluated as soon as possible. Early intervention is key in helping kids with ASD gain the skills they need.  My dd was diagnosed at 3 years of age and spent 3 years in a full day program. She had speech, OT, PT, applied behavioral therapy, and feeding therapy. She graduated kindergarten and was partly in mainstream classroom. Without all of her early intervention she would not be where she is today. She still has many challenges and issues but things could be far worse. Having a label isn't a bad thing at all in my opinion. Don't let your fear get in the way. Do the eval and start therapy even if there is no label. 

 

With regard to the MMR, we don't vaccinate at all. It is a hot button issue and only you can decide what to do. Do your research. Dr. Tenpenney is a great resource as is Dr. Mercola. 

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#8 of 92 Old 06-18-2011, 02:52 PM
 
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I, too, had often wondered if there was something "off" with my son. I did get him looked at but they all said he was normal. I had the same fears of labels as you do. Having now finally realized that both my kids have Asperger's I can tell you why I am so happy to figure it out and why I will be going ahead to get a diagnosis. 

 

First and foremost, it allows me to understand exactly what is going on with my kids. I knew that on certain occasions, under certain circumstances, undesireable behaviours were likely to occur. So I worked to minimize those situations and mostly our life has been good. However, now that I realize they have AS I can finally GET, and *understand* exactly what is causing these beahviours. I never realized that the rages my DD would fly off on, and the venomous attitude towards certain kids who had done nothing to her, were all part of her social anxiety. Or that my child's tendency to shove people over was his dysfunctional way of initiating play and he wasn't a bully. I can't tell you how wonderful it is to finally understand my kids - isn't that every mother's goal? Of course, you don't need a diagnosis for this. If you read a good book on the issue and it fits your kids so well you think it was written about them, there's a lot to help you out without ever going the diagnosis route. And if you are not in school (homeschooling, for example) there is no real need for a diagnosis. 

 

I would ask you if your son's issues are negatively affecting his life right now. If not, then I wouldn't be in such a rush for things. I can tell you that, from what I have read and understand from my own experience, it is very difficult to diagnose something like Asperger's until they are around 5 or 6 years old. Too young and you risk a misdiagnosis that may send you off down the wrong track. OTOH, if he is having issues or exhibiting behaviours that are causing difficulty for you or the family, it would be good to start working on those through therapy etc. In my case it became apparent with DS that he was not going to outgrow behaviours that, when he was younger, could be excused by others as him just being young. Now these behaviours produce negative reactions and are affecting his ability to socialize and he *wants* to socialize. So he definitely needs help and I don't really know how to do that b/c I can't intuitively understand the problems. Yes, I believe I could read a lot of books and do a lot of work with my kids to help them on my own, but I'm not that way inclined. Since they are unschooled the diagnosis will not have the social and administrative ramifications they might otherwise have, so it's not really a big deal for us. In fact DD is pretty proud of "being an Aspie"! But it gets us access to therapists and other programs that will really benefit my kids so that's why we are looking for a diagnosis.

 

 


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#9 of 92 Old 06-18-2011, 03:32 PM
 
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Haven't read the entire thread because I have to run but wanted to respond quick.

 

First...hugs to you.  I have been where you are and it is a scary place to be.  We started really feeling like something was "off" with DS around the time he turned 18-19 months.  Similar to what you're talking about including toe walking, head banging, minimal language, etc.  Also, DS was a very snuggly and affectionate kid with me and DH and had some other close relationships with family members.  Anyhow, we started on what seemed to be a really long quest to find out what was going on with him.  Along the way, we saw numerous specialists including a developmental pediatrician, psychiatrist, neurologist, OT, PT, and speech therapist.  He was "labeled" with all sorts of things to include: ASD, suspected apraxia, global developmental delays, insomnia, etc., depending on who we spoke to.  This is the big thing about labels though...the labels, ie. knowing what the "experts" thought was going on with DS, allowed us to focus our attention and our research in order to help him.  Being given the ASD label forced me to sift through tons of information to see what I could do to help DS.  For him, his sensory needs desperately needed to be addressed which we were able to do through occupational therapy.  Also, his speech needs had to be addressed as well.  But the bigger piece for us was the whole gluten free casein free diet.  We saw absolutely huge changes in DS.  At age two, he was at a 6-9 month level in his expressive speech skills.  At age three, he was considered to be on track expressively and at a three year old level except that he is very difficult to understand, though improving.  The whole "suspected apraxia" dx also pushed us to try using a very specific fish oil with him, which also seemed to make a huge difference in his speech and language skills. 

 

I guess what I am saying is to try not to fear the labels.  When my son had his IEP meeting to start speech and PT services in the school system, there was no mention made of apraxia nor ASD, because these labels no longer seem to fit.  He'll be seeing his developmental ped soon to rule those out, but I am all but certain that they will be ruled out.  Labels don't have to "stick" for a life time.  They describe a child and a situation at any given point, but it isn't like when my son gets married one day that we'll be announcing at his reception that its his special day, and by the way he has been labeled with all sorts of things throughout time.  You can have someone label your son, and use the label IF you see fit to describe him as you pursue services for him and as you research treatment for him. 

 

Also, I've worked in EI and been on the receiving end as well.  It sounds like you had a stinky experience with them round one which isn't that uncommon.  In the 1.5 years my son was in EI, I fired two speech therapists and finally settled on the third and kept her.  I also fired an OT.  And, I fired a "teacher."  It makes me sound like a real B, and I don't doubt that I was the talk at plenty of EI meetings and seen as a really pushy parent.  In the end, I don't care, and I didn't care, because I got my son the services he needed and deserved to have.  I had some frank conversations with the director of the program, and she saw I was serious about advocating for my son and she gave him more experienced therapists. 

 

Don't delay services for your son out of fear.  Early intervention/receiving services early, including being able to implement diet changes if that is what you'd like to try, is really truly important in your son's overall development.  There is a reason that there is such a heavy focus on EI and that is because kids who receive services earlier in life have much better outcomes.  I have always feared my son not developing to his full potential much more than I have ever feared him temporarily being given a label that could be dropped at any time.  I know it is scary, but you can't help your son if you live in denial and don't seek help to find out what is going on with him.  Be brave and have him evaluated.  You will never ever regret that you did, but you may very well regret waiting and wasting precious time.  Hugs, mama... It is hard but you are strong and can do it. 

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#10 of 92 Old 06-19-2011, 11:02 AM
 
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We stopped vaxing years agosmile.gif--  As for mumps--sterility, prior to the vaccine, was rare enough that there apparently are no stats on it and it isn't on the radar until puberty. IF a boy contracts mumps after entering puberty, and IF he develops orchitis, and IF it affects both testicles, then maybe sterility would be an issue. In any case you have a few years before you have to make a decision on that.

 

I would make the appointment for the hospital evaluation now, which I'm guessing is with a developmental pediatrician; chances are the appointment would be weeks, if not months, away. And as a pp mentioned, he is years away from an Asperger's diagnosis. My ds couldn't get one at 6y11mo because the Dr. felt that a year may make a difference for him as his behavior/development was on the borderline--he has an ADHD diagnosis and had wicked tantrums through 6yo, most of which went away with the right ADHD medication and CBT. Also, a key part of Asperger's is normal language and cognitive development.

 

You could also get an evaluation through a place that does both OT and ST. Sensory issues aren't necessarily as obvious as not liking seams in socks.

 

Another thing to consider is a pediatric audiologist if you'd like another opinion on his ears.


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#11 of 92 Old 06-19-2011, 11:53 AM
 
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This sounds SO much like my DS#2 around his second birthday. Language delays, frustration since he couldn't communicate, obsessed with books, but clearly learned quickly (lots of echolalia). He couldn't handle the noisy or visually stimulating places like grocery stores or malls or startling sounds like trucks going by. He never lined things up, never banged or rocked, seemed to seek out other kids but had no idea how to interact with them. He never regressed. So we didn't seem to fit the typical spectrum checklists either.

 

We got him into speech and OT, where we worked on the symptoms and worried later about labels. But labels became important in getting him services covered under insurance. We learned that labels are malleable - they can change, they don't "stick" and they are VALUABLE in getting our child what he needs. Later, we got him into social skills classes under a Autism Spectrum label. He was the highest functioning one there, but he needed the skills and guidance he got from those teachers. We got evaluations from private therapists, covered through insurance, so it was a more positive experience than you describe through EI. However, when DS was 4 and we went through the school district, they did a WONDERFUL job evaluating him. So it may mean trying a couple difference places before you find somewhere that clicks.

 

We have had numerous professionals tell us in the past year he would not be as far progressed without that early intervention. If we had ignored the signs and delayed, we would have missed a window to help rewire his brain and help him to communicate better with others.

 

Fast forward. He turns 7 in August. Is reading 4+ grade levels ahead. Current label is Gifted with PDD-NOS. Is mainstreamed going into first grade with minimal support in classroom. Outgoing to the point of being a performer. His teachers love him. We just had him at a week of Cub Scout camp with a bunch of typical peers. Many people have no idea there's anything different about him, except for his reading ability.

 

Get your kid evaluated and embrace the services that can potentially help him. Don't worry about the labels and don't be scared. Yes your child may be different than others and may need some help to find his fit in the world. But as a mom of 4, I can tell you. they are ALL unique anyways :)

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#12 of 92 Old 06-19-2011, 03:28 PM
 
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I am almost EXACTLY where you are and I am so happy you started this thread.

 

I know how you feel - it is so scary. My DS will turn two in August and has always had issues with eye contact. He used to not respond to his name at all, but now will respond unless he's really engrossed in something else. Sometimes he totally ignores us. We got him an EI eval at 15 months and he was diagnosed with speech and social delays, and gets therapy for that. I am so sorry you had a bad experience with EI because we have loved it. He went from basically no words to HUNDREDS. He talks up a storm now (though still sometimes can be repetitive or nonesensical - probably normal for his age). He still has some trouble with receptive language but has made great strides there as well.

 

He plays with lots of toys and has some pretend play (talking on a phone, pretending to cook, "feeding" his stuffed animals). But he does like to look at the wheels on his cars. He seems happiest when he is lying down on the floor making his cars drive around. He always wants to lie down. But, if we initiate a game with him, he will play chase, read a book, play with blocks, etc. So it's not hard to "pull him out" of this laying-down-with-cars thing. He is not super affectionate but will give hugs and kisses sometimes and will sit on my lap a LOT (especially if I'm on the phone or holding his baby brother - ha!).

 

I guess my point is - our kids are almost the same age and I see a lot of red flags too. I am also scared of the ASD label. We took him for an intake interview at the Autism Center nearby and it was terrible - the nurse was so negative and basically manipulated everything I said. We have decided not to return, and if and when we do get an ASD eval, it will be at the other major Autism Center nearby. We are lucky to have choices.

 

I think since we are already getting services we may wait on the Autism eval. I agree with the other posters who have encouraged you to address his specific needs and maybe worry about the label later. We are getting speech and special ed (and he's on the waitlist for two special preschools where he'll also get therapy), so we don't feel we "need" the ASD label right now. We will get on the waitlist at 2.5 to get him eval'd at age 3 if we think he'll continue to need services once EI is over. You could do the same - get your son speech therapy, etc., without getting an actual ASD diagnosis if you think your insurance will cover it all. Everyone else has given you better advice than mine...I just wanted to let you know there are others out there struggling with this exact same issue. I wonder all the time if I'm making the right decisions, and I'm also scared of what the future holds. You are not alone!

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#13 of 92 Old 06-20-2011, 12:17 PM
 
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I can definitely appreciate your anxiety over having your child tested.  I have a 1 and a 4 year old, and sometimes every little diversion from what seems normal to me leads me to jump to conclusions about their development.  I'm also a psychologist (I'm getting my PhD), and I know how important it is to have children assessed as early as possible.  I have no idea if your child is on the spectrum, but regardless, I know that children who are diagnosed early have the best chances for remediation and show the best outcomes later on.  It might also be easier to parent without all of the added anxiety of wondering if you child is on the spectrum.  I can't think of anything to say that will allay all of your fears (for I have felt them myself and know how hard they are to overcome), but I will say that normative development spans a wide range of behavior and that having an objective individual evaluated your child might be helpful to both of you.  Finally, the most reliable system for evaluating spectrum disorders is the ADOS (Autism Diagnostic Observation Schedule).  Unless your provider is trained in it, I would not fully trust any diagnosis/evaluation.  I hope that is helpful.

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#14 of 92 Old 06-23-2011, 04:39 PM - Thread Starter
 
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Thank you so much for all of the advice! So dh took DS to the ped for his 2-year appt (yeah we are a bit behind lol), and told the ped about his behaviors and she wasn't worried at all! confused.gif She even told dh (in reference to ds's head banging) that he knows how hard to bang so that he won't get hurt. So, what to do? She had him do a few exercises and he followed her directions so she seemed satisfied. She just said to work with him on 2-word sentences. Dh seems content too that DS is fine. I still think he needs an eval, but dh doesn't agree. What to do??? :(

 

ETA: Sorry I haven't responded to each individual post, I've been so busy- I will go back and respond as soon as I can, I promise! I really appreciate all of the feedback! :)


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#15 of 92 Old 06-24-2011, 08:48 AM
 
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I would continue to keep track of any behaviors that are a concern in a structured way (daily, so you get some perspective) for a future visit with the same pediatrician.  If you still don't feel listened to, get someone else.  You could also consider getting the speech evaluation done in the mean time.  Speech therapy is so much more effective done early, and SLP's are more aware of speech problems than most pediatricians.  They can also pre-screen for what's called pragmatic language (non-verbals).  The pediatrician can use some of this information as part of the ASD investigation.  And please don't worry so much about the label as getting whatever help you need.  Labels can help you find treatment options, but they can change many times over, with previous diagnoses being refuted, downgraded or upgraded.  However, even when the label doesn't quite match, the act of getting the screening process done helps to narrow down strengths and weaknesses and come up with a plan.


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Originally Posted by JFTB1177 View Post

Thank you so much for all of the advice! So dh took DS to the ped for his 2-year appt (yeah we are a bit behind lol), and told the ped about his behaviors and she wasn't worried at all! confused.gif She even told dh (in reference to ds's head banging) that he knows how hard to bang so that he won't get hurt. So, what to do? She had him do a few exercises and he followed her directions so she seemed satisfied. She just said to work with him on 2-word sentences. Dh seems content too that DS is fine. I still think he needs an eval, but dh doesn't agree. What to do??? :(

 

I'd go ahead with whatever evaluation would satisfy you because you'll still be thinking about it and worrying; moms tend to be ahead of the curve on these things, dads seem to take awhile to see that there is even an issue. I've heard many times "our pediatrician said there was nothing to worry about so we let it go until..." I agree that a speech therapy eval would be easy enough to do.

 


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#17 of 92 Old 06-25-2011, 04:02 AM
 
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Yeah, I would at least go for speech therapy.  Good luck!


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#18 of 92 Old 06-25-2011, 07:06 AM
 
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Our pediatrician was very laid back and "wait and see."  So glad I didn't listen to her.  DH was also in total denial and content to listen to ped as well.  I was the one who pushed and DH has thanked me a billion times since.  He was so scared (as was I) but there is no harm in having an evaluation done, and there is no harm in at least starting with speech therapy.  You really have to be your son's advocate though.  When I worked in EI, we were strictly told to keep our mouths shut about ASD.  It wasn't that most of us didn't have a strong intuition about kids, but we weren't developmental pediatricians and our supervisor did not want us to get it "wrong" and then be responsible for that.  So, keep that in mind where you are asking therapists their opinion.  They might be a lot more reserved in their observations when sharing with you.  I would insist upon a referral to a developmental pediatrician.  The worst that can happen is that the dev. ped. tells you all is well and to go on your merry way, and you'll have wasted a bit of time, but will have some peace of mind.  Good luck

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#19 of 92 Old 06-25-2011, 04:38 PM
 
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Originally Posted by JFTB1177 View Post

Thank you so much for all of the advice! So dh took DS to the ped for his 2-year appt (yeah we are a bit behind lol), and told the ped about his behaviors and she wasn't worried at all! confused.gif She even told dh (in reference to ds's head banging) that he knows how hard to bang so that he won't get hurt. So, what to do? She had him do a few exercises and he followed her directions so she seemed satisfied. She just said to work with him on 2-word sentences. Dh seems content too that DS is fine. I still think he needs an eval, but dh doesn't agree. What to do??? :(

 

ETA: Sorry I haven't responded to each individual post, I've been so busy- I will go back and respond as soon as I can, I promise! I really appreciate all of the feedback! :)


Regular pediatricians are not trained to diagnose Autism Spectrum Disorders or other developmental disorders, so it's not uncommon for them to not miss these diagnosis, especially in very young children.

When our son had his 2 year appointment ( which was actually at 2 years and a few months, because we moved), we were concerned about his lack of language and motor skill delays. We were already involved with Early Intervention and the therapists there strongly advised us to get a referral for the developmental ped at the local children's hospital. At the appointment, our regular ped said he didn't think that was necessary and didn't see anything that worried him in that regard. (We did get a referral to a pediatric ophthalmologist due to DS's eye issues.) I was disappointed to not get a referral to the dev ped. A week later I called the doctor and told him I really wanted that referral. He still didn't think it was necessary, but said that if I felt that strongly about it he would write the referral. I'm so glad I pressed the issue.

It the developmental ped had a 4 month waiting list and the diagnostic process took about 5 months, so DS got his official diagnosis of autism 1 week after he turned 3. Up until that day, my husband had been in denial. DH is a great Dad, but he had a really hard time with the idea that there was something wrong with his little boy. He disagreed with me about Early Intervention, about private speech therapy, and about the developmental ped. I went forward with all of them anyway. I told him when each appoint was scheduled for and told him that he could be there is he wanted to or I would handle it myself. He came to the ones he could attend with his work schedule, but he still didn't think there was any problem.

The day DS got his official diagnosis of autism, DH did a 180. He finally "got it". He finally accepted that DS needed all the intervention, the therapy, the special preschool, etc. He finally stood up to his family and told them to stop saying that DS's difficulties were due to our parenting. I was grateful to finally have him on board and he was grateful that I had pursued everything relentlessly.

So I would encourage you to go forward with getting a full evaluation.

Lolly
Mom to an amazing little guy, age 9 (Autism, Hyperlexia, Dyspraxia, Albinism, Chromosome Microdeletion)

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#20 of 92 Old 06-25-2011, 06:04 PM
 
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Do not worry about labels right now. It is something you can deal with later. You feel something is off. If you have the $$ go via private psychologist route.

 

I know how you feel. It was very hard for me to accept bipolar diagnosis in my kid, but as our shrink said "He is still your son. Label allows you to get help form school, insurance company etc.  We have lables for all around us. Cup is label not the thing itself. Cat is label not the being itseld"

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#21 of 92 Old 06-25-2011, 09:41 PM
 
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Please go ahead and start the evaluations. The pediatricians aren't really too good at diagnosing ASD. I was told over and over by my dd's ped that she was fine when in fact she wasn't. The peds don't specialize in ASD so it is best to go ahead and starting testing. It certainly can't hurt but it will make you feel better if experts can reaffirm what the ped says. The ped isn't the person who has to teach and raise your child. Early intervention is key!
 

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Originally Posted by JFTB1177 View Post

Thank you so much for all of the advice! So dh took DS to the ped for his 2-year appt (yeah we are a bit behind lol), and told the ped about his behaviors and she wasn't worried at all! confused.gif She even told dh (in reference to ds's head banging) that he knows how hard to bang so that he won't get hurt. So, what to do? She had him do a few exercises and he followed her directions so she seemed satisfied. She just said to work with him on 2-word sentences. Dh seems content too that DS is fine. I still think he needs an eval, but dh doesn't agree. What to do??? :(

 

ETA: Sorry I haven't responded to each individual post, I've been so busy- I will go back and respond as soon as I can, I promise! I really appreciate all of the feedback! :)



 

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#22 of 92 Old 06-26-2011, 08:36 AM - Thread Starter
 
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Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?


Mommy to beauties DS1 (7), DS2 (4, autism), & DS3 (2)

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#23 of 92 Old 06-26-2011, 11:21 AM
 
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I now have 2 dx'd with autism.  Get the eval.  You'll either get a dx or you'll get the all clear.  Knowing is the only way to move forward.  If your dh is sure there's nothing wrong, then this will confirm that.  The label will NOT change your child, it will simply help you find out the best way to help him.

 

I don't remember asking dh, I just told him we were getting it done-there was a speech delay and EI could help - at that point, autism wasn't suspected by me at all.  with my ds2, I was sure it was autism, even before the eval - dh didn't think so, but honestly, he really is clueless - I'm the one who does all the therapy, IEPs, etc.  Ds2 was a little harder for me b/c he's milder, so it was harder/took longer to figure out, but it was also easier b/c I knew what to expect.

 

It was scary, the unknown, but ultimately, not knowing doesn't change things - I mean, if someone thinks they have cancer and never get tested, does that mean they DON'T have cancer?  Of course not, it just means they're delaying treatment that much longer if they have it and they're delaying the relief of the all clear if they don't.

 

The actual eval is really not a big deal.  Just questions and observations.


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#24 of 92 Old 06-26-2011, 11:57 AM
 
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Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?


Typically, though there might be a limit of visits per year. I didn't ask dh, I discussed it with him, but found the providers and made the appointments myself and told him when they were.

 

Whatever label he may get now is likely to change more that once in the next several years since he is so young. And not getting help, if appropriate, will not prevent labels; the labels may just end up being related to discipline instead of disability.


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#25 of 92 Old 06-26-2011, 12:00 PM
 
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Perhaps your DH downplayed the delays, even subtly? the peds generally are not quick to refer out if the parent seems reluctant.

 

I had a ped who "wasn't concerned" at 2 when DS had limited speech and other issues. I pushed her for the evaluation referral (we did need one for speech eval). Grateful that I did. He would not have 'caught up' on his own. However, having had a daughter with delayed speech, which resolved itself once she got ear tubes, I can see why they don't just send every kid out to speech therapy for slight delays.

 

I had a DH who thought it was all a bunch of baloney - couldn't understand how OT and ST would help our DS. We had some real fights and I nearly had to go around him to get DS evaluated. Not our best marriage moment. But DS needed the help, I just knew it, and was willing to battle on this one.

 

Like other posters, it took DH awhile (6 months? I don't recall exactly) but he came around, when it was evident that there WAS in fact something "wrong" and that the therapy was helping but that it was going to have to continue. (the written evaluation was very helpful, it was black and white and showed charts and data on the specific delays). DH was good about doing exercises and following the ST instructions, I think the issue was he needed to know what to do. The uncertainty was the big issue for him. DH has also thanked me multiple times, has publicly complimented me for being DS's advocate and is the first to say that DS would not be where he is without that early intervention.

 

It seems to be a common theme I hear in real life, that the dads have a hard time, especially with sons, accepting that there may be something "wrong".

 

I'd call the ped office back, say you want a referral to a ST for evaluation, they should provide it with really no more discussion than that.

 

The offhand comment that head banging is normal, concerns me. A good ped shouldn't say that. Did they do the autism checklist at 18 months? The AAP recommends screening (it's a 1 page checklist, if I recall) done at 18 mos and 24 mos.


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DS#1: 9/01 DS#2: 8/04 : DS#3: 7/06 DD#1: 8/09
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#26 of 92 Old 06-26-2011, 12:11 PM
 
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Insurance coverage - many states now require private insurance to cover speech, occupational therapy and other therapies under the autism label. texas is one that requires coverage under medical insurance, but only to age 6. That's why timing is important as well. Originally, our insurance only covered speech therapy to age 3. You need to get started sooner rather than later.

 

You probably need a referral. ST and OT's (and PTs) need a doctor's referral to practice. Not just an insurance requirement. I think it's licensing or something.

 

We had much better coverage, better provider selection, more in depth therapy, through our private providers/insurance. We paid copays and coinsurance. We didn't go with public EI. It wasn't cheap but was worth it.

 

ETA: I see from prior posts you're near Kennedy Kreiger. What a fabulous resource. However, you may have weeks of wait to get in, first for the eval, and then for any actual therapy. Don't wait 6 months for one location, start wherever you can and then if you can get in at K-K, do so later.


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#27 of 92 Old 06-26-2011, 12:37 PM
 
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I understand that you do not want to label your son or that you fear there might be something wrong with him  We all wish for our children to be healthy, happy and issue free.  That being said, we live in a very toxic world and is difficult for our children's pure and precious bodies and minds to handle all these toxins.  My son is on the spectrum, I knew that something was not right and when I finally decided to confront everything I uncovered so many things that have helped him.  I highly suggest you read Dr. Kenneth Bocks book and/or the latest book by Dr. Julie Buckley (both books can be found on amazon).  This can help you to understand that your son might have some medical issues that might be attributing to his behavioral issues.  These two books were lifesavors to me, I hope they help you on your journey to help your son be the happiest and healthiest he can be...

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#28 of 92 Old 06-26-2011, 03:32 PM
 
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Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?



Typically not.  When I worked in EI, we would verify insurance and bill them if the family's insurance covered it.  I would estimate 80% did not cover speech for developmental delay which was what nearly all kids receiving speech therapy were under because very few had a diagnosis of ASD or apraxia prior to age three.  I believe insurance now has to cover for autism, and many just do cover for apraxia, but I am not certain.  You can call your insurance company and find out for sure.  Otherwise, you can try the EI route and ask for a new therapist if you are unhappy. 

 

As far as DH... I just told him I WAS having DS evaluated.  It wasn't up for discussion.  I acknowledged his fear and shared mine.   I said he didn't have to be there, and he chose not to come (had to work anyhow).  I wasn't about to waste time waiting for him to get on board and knew how long that could take.  Here, it takes about a year to get in to see a developmental pediatrician.  I didn't feel I had weeks or months to wait for him to come around.  Also, I pretty much told DH we were doing the GFCF diet which he initially balked at, but did end up getting on board.  I just reminded him that if we were doing everything and DS turned out to be fine, we would have lost nothing, but if we didn't do anything, we couldn't turn back when DS was ten years old and intervene during such a critical period of language and brain development. 

 

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#29 of 92 Old 06-26-2011, 03:52 PM
 
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Insurance paid for speech therapy for my DD. At the time, she was labeled as having speech delays due to chronic fluid. She also had tubes. You need to check YOUR insurance -- they are all different. They may have certain hoops to jump through, or certain limits.

 

As far as my DH, he's managed to live in an amazing amount of denial. I just do what needs to be done. At times, it's driven me bonkers. At other times, I think it's all good. May be it's good for a child to have a parent who just can't see that there is anything "wrong" with them, may be that's been good for my DD in a way. It wouldn't be good for her if we were both like that or if I let his denial make decisions. So I make everything happen that needs to happen, and he just enjoys her exactly the way she is.

 

He has had moments when it gets through to him, and he has thanked for taking care of everything. When it does get through to him, it kinda freaks me out, because I get this "oh god, it is as bad as I think" feeling.


but everything has pros and cons  shrug.gif

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#30 of 92 Old 06-26-2011, 06:31 PM
 
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Question- does insurance cover private speech therapists?? I really want him evaluated but I'm having trouble getting dh on board - how did you all deal with this, those of you whose dh's weren't on board or were in denial that there was an issue?


It really depends on the specific policy. And policies can vary so much. Some will cover speech therapy for developmental issues. Others will not, but make an exception for Autism Spectrum Disorders. Other policies will not cover speech therapy for ASD.

So you really need to contact your insurance company or talk to your (or DH's) benefits coordinator, if you have insurance through an employeer.

Our family has had several different policies, due to job changes. The policy we had first did not cover DS's speech therapy until he got the autism diagnosis. Before then we were able to get private speech therapy through a grant from a local organization. Our current policy does not cover speech therapy for ASD or any other developmental disorder. So now, DS gets all his speech therapy through school.

Lolly
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