In denial?

TTnoles

Hi there,

 This is kind of a cross post from 12-24 but I didn't get much of a response and I am anxious at the moment.  DS is 21 months, at 12 months his vocabulary wasn't where his pedi wanted him to be so we were asked to participate in a research program with a local university that offers screening, assessments and resources to children 6 mos-24mos.  I was never worried about his speech and they weren't concerned either.  By his next visit at 17 mos he was signing 5 signs and had much more words, the clinician even stated she thought he was low risk for ASD or LDD.  He was still a little behind but nothing major.  A his visit yesterday I thought  his responses were a little off but I attributed that to being due  that I scheduled it at nap time and he hadn't had lunch yet.  But at the end of the visit she said she though he should go through the 3 hour screening for ASD.  She said when he handed her one of his toys he should have gazed at her and she thought he was too focused on the toys rather than the people in the room (mainly myself and her).

I guess here comes the question part for me....were any of you shocked as hell when someone gave you an inkling that there might be something up?  I have been looking through websites and boards and seeing the phrase "go with your gut".  I feel like my gut betrayed me because I never had a suspicion that this could  be something like ASD.  I feel like I watched for all the signs (holds eye contact, has plenty of words and just started 2 word phrases, points at items, no repetitiveness, no sensory issues, etc). I work with students with dyslexia and language communication deficits and work with many children on e spectrum so I feel like I should be more sensitive to this kind of thing.

 Clearly we are going to get the screening, this limbo part is killing me.  You women are amazing and as I read your posts I admire your knowledge and insight.  I guess I am just wondering if I'm seeing my son through rose colored glasses or not?  And of course now that I have been googling like crazy every little thing he does is open to interpretation.  

Anyways, I'm just looking for someone else who didn't get a "gut" feeling or felt they were in denial to tell me how to resolve these feelings and just be satisfied that I have a resource to tell me if we need a treatment plan.  Thanks ladies! 

Ninabean1030

I will say that I wasn't in denial about something being off but I was in denial that an ASD was a possibility but that's partially because EI told us there was no way she had one and we found out two years later that yes she did. 

TTnoles

Thank you so much for your response.  They did not do an MCHAT with him, although for each visit we filled out questionnaires in regards to his abilities and behaviors.  I think this one he scored a little lower percentage wise on expressive?  But honestly the whole thing feels like such a blur now.  I did the MCHAT and the MCHAT 2 follow up online today to get a better feel to see if I missed anything.  For the original MCHAT 1 he was no risk and I looked at MCHAT 2 just to see. No red flags for me.

 She did say that the eval would be a useful tool to diagnosis something like an LDD as well.   

Thank you again for your response though.   

jenn11178

Poor DH was in denial up until the day we got our son's diagnosis.... For myself, it was an evaluation done by EI when he turned 2 that made me face the truth.  During their eval he did so poorly..I recall making excuses for him...said in my mind..he was tired or unprepared or overwhelmed.  So yes..at that time I too was in denial..and though EI could not diagnose him they did strongly suggest it might be ASD and to follow up with a diagnostic evaluation.

After that initial meeting..I went through all the stages of grief..denial..anger..sadness..then acceptance because I knew in my heart there was something different about our son.  Months later when we finally got our dx..I did not cry..though DH did he was finally accepting the truth..and it was like a weight lifted from our shoulders.  We thought..ok..this is what it is..we can get through this together..how do we help our son..not to say some days are not harder than others but we try to be positive and do the best we can every day...

 Google will drive you insane...I stayed up all hrs of the night comparing him to a text book definition and justifying a lot to my own avail.  Btw..my son passed the MCHAT and our pedi thought there was no way he was on the spectrum.

For your own sanity..make the appt and try to get one sooner than later..I know some places have long waiting lists.  We are also in Mass and I found it unacceptable to wait so many months o we luckily found someone to take us sooner..if you would like..I can give you their info.

Good luck and please PM me if you have any other questions.  

 

 

anon88888

-auntie-:

OP's baby isn't even 2 yet. He's not old enough to take some of the critical components of a good ASD evaluation. Since he's already getting appropriate services, it might make sense to wait until he's a bit older. Even if the parents were given a dx at this age, they aren't likely to get much in the way of prognosis.

A diagnosis here opens the door to the specialty service providers through EI, which can net 12-28 more hours of focused intervention per week.  

MirandaHobbes

This is sortof a sore topic for me. That my "gut betrayed me" doesn't even touch it. DS was my first and only child and I never realized his behaviors were atypical. Our first DCP never raised any issues until the very last day when she said that they had to watch our for DS, that he was sensitive to the other kids and would cry when any of them came near him or took a toy (he was 19 months at the time). I knew he wasn't speaking much at all at 19 months, but DCP, who had 3 kids of her own plus a couple decades of daycare experience, just said he'd get there eventually. Our next DCP was a much younger friend of a friend.  Within a couple weeks of him joining her group, she called me with concerns. She said he didn't want to play with the other kids. I thought she was just being snobby!  So naturally I was defensive when she starting claiming DS wasn't "socializing" well enough. We argued about it one night and, to get her off my back, I agreed to go to HER doctor (because mine wasn't good enough!) to have him checked out. Her doctor was a nice guy, and he agreed there was no harm in an EI evaluation. The EI team diagnosed him within a month, at around 20 months. I remember arguing with them when he was being evaluated. Like they'd say to him "DS!! Look at that!" and then half glance over their shoulder. DS would predictably ignore this and not look over their shoulder as indicated. I complained- how would a not yet two year old know to do that?? It was awfully subtle. Or they were so concerned with the fact that when he wanted something, he wouldn't point. What so big about a pointer finger??! When he was thirsty, he'd whine and kindof flap his hand towards the faucet- I always thought that was good enough. Clearly, I was wrong. It is really amazing and awesome that they can diagnose so early, but it makes it hard for some parents (like me) to grasp the nuances. Auntie once said that it's the parents job to be "good reporters" and this is so true, and equally difficult. For example, at DS' 18 month checkup I dutifully filled out the autism form that is required. I recall making quick checkmarks not really giving any of them real thought. I remember one question asked if DS had at least 3 or more words, with the caveat that "you may count a word that was said once". I rationalized that I had heard some words, DS used to say Momma and "Kee" for kitty, although not much anymore. It never occurred to me that that was regression. When filling out all the forms during his EI eval (can't remember the types) I remember the questions about joint attention; it would ask "Does DS respond when you call his name". I marked "yes", because he did. I didn't realize that DS was supposed to respond 100% of the time- not just once in awhile. Another form I filled out made me think harder because it gave percentages, like "Does he do this never, 25% of the time, 50% of the time, etc".

The point in all my rambling is that yes, I feel like there is a contingent of parents out there that have good intentions, but are slow to come around. Fortunately DH and I would never have actually said "no" to any of these concerns, even if we didn't agree. I agreed to start EI services because I was afraid if we didn't there would be some big mark in his file and they wouldn't let him start kindergarten on time. Ha. It wasn't until some of his more stereotypical autistic behaviors started emerging that I realized this was for real. I remember my heart dropping to the floor when I walked into his room one day and saw all this toy cars lined up in a perfect row across the room.

The "gut" thing is really hard. Everyone says "trust your Mommy gut". Well my Mommy gut was pretty 100% sure he was fine. I was really bitter at first because I felt like everyone was saying I was a bad mom for trying to disagree with them (including when I first posted on the bump!). Maybe its because I'm a lawyer, I dunno. Whenever I see someone post on here and they seem like they're in denial, I always tell them whether they agree or not, just get an evaluation and let the professionals decide.

august06mom

MirandaHobbes:

This is sortof a sore topic for me. That my "gut betrayed me" doesn't even touch it. DS was my first and only child and I never realized his behaviors were atypical. Our first DCP never raised any issues until the very last day when she said that they had to watch our for DS, that he was sensitive to the other kids and would cry when any of them came near him or took a toy (he was 19 months at the time). I knew he wasn't speaking much at all at 19 months, but DCP, who had 3 kids of her own plus a couple decades of daycare experience, just said he'd get there eventually. Our next DCP was a much younger friend of a friend.  Within a couple weeks of him joining her group, she called me with concerns. She said he didn't want to play with the other kids. I thought she was just being snobby!  So naturally I was defensive when she starting claiming DS wasn't "socializing" well enough. We argued about it one night and, to get her off my back, I agreed to go to HER doctor (because mine wasn't good enough!) to have him checked out. Her doctor was a nice guy, and he agreed there was no harm in an EI evaluation. The EI team diagnosed him within a month, at around 20 months. I remember arguing with them when he was being evaluated. Like they'd say to him "DS!! Look at that!" and then half glance over their shoulder. DS would predictably ignore this and not look over their shoulder as indicated. I complained- how would a not yet two year old know to do that?? It was awfully subtle. Or they were so concerned with the fact that when he wanted something, he wouldn't point. What so big about a pointer finger??! When he was thirsty, he'd whine and kindof flap his hand towards the faucet- I always thought that was good enough. Clearly, I was wrong. It is really amazing and awesome that they can diagnose so early, but it makes it hard for some parents (like me) to grasp the nuances. Auntie once said that it's the parents job to be "good reporters" and this is so true, and equally difficult. For example, at DS' 18 month checkup I dutifully filled out the autism form that is required. I recall making quick checkmarks not really giving any of them real thought. I remember one question asked if DS had at least 3 or more words, with the caveat that "you may count a word that was said once". I rationalized that I had heard some words, DS used to say Momma and "Kee" for kitty, although not much anymore. It never occurred to me that that was regression. When filling out all the forms during his EI eval (can't remember the types) I remember the questions about joint attention; it would ask "Does DS respond when you call his name". I marked "yes", because he did. I didn't realize that DS was supposed to respond 100% of the time- not just once in awhile. Another form I filled out made me think harder because it gave percentages, like "Does he do this never, 25% of the time, 50% of the time, etc".

The point in all my rambling is that yes, I feel like there is a contingent of parents out there that have good intentions, but are slow to come around. Fortunately DH and I would never have actually said "no" to any of these concerns, even if we didn't agree. I agreed to start EI services because I was afraid if we didn't there would be some big mark in his file and they wouldn't let him start kindergarten on time. Ha. It wasn't until some of his more stereotypical autistic behaviors started emerging that I realized this was for real. I remember my heart dropping to the floor when I walked into his room one day and saw all this toy cars lined up in a perfect row across the room.

The "gut" thing is really hard. Everyone says "trust your Mommy gut". Well my Mommy gut was pretty 100% sure he was fine. I was really bitter at first because I felt like everyone was saying I was a bad mom for trying to disagree with them (including when I first posted on the bump!). Maybe its because I'm a lawyer, I dunno. Whenever I see someone post on here and they seem like they're in denial, I always tell them whether they agree or not, just get an evaluation and let the professionals decide.

Yeah, I could have written this same thing -- especially the part about finding the cars lined up and that heart-drop feeling. DS was flagged by his pedi for speech services at 15 months, and the evaluators kept saying, "The moms always know!" Except I didn't know. I just went along with it because I knew it wouldn't hurt anything. But I was shocked when his scores were so low. I keep being surprised when they tell me his OT eval scores, or his special instruction eval scores, or the scores from his developmental pedi. I just keep chugging along with the services because I know they're only helping, and goddamn if I don't know a thing about this stuff.

Of course, I do know a lot more about it now, and I see things that we missed in the past -- stuff I thought was normal but actually wasn't. So don't beat yourself up about not "trusting your gut." Just take solace in the face that you're doing everything you can as you move forward.

And I agree with Auntie about getting used to limbo. We've been doing EI for almost a year, and while I can see goals being accomplished, there's always SOMETHING else that we need to work on. I'm trying not to think too much about DS's long-term future. Even though DS is very high-functioning, the literature that talks about ASD long-term prognosis is still upsetting to me at this point. I'm not there yet.

SantoriniSteph

My DH's family has a few people with Autism.  My BIL was an Autistic child and is now a fully functioning adult.  With that in mind, I knew Autism was a risk.  I was in denial at first, thinking that DS was just behind and would catch up.  It took a few months before I made the doctor appointment, we saw the doctor at 21 months old, and got the ASD Dx at 23 months old.  We started speech therapy the next week, and ABA therapy the next month.

 I feel like I should have researched the signs better, looking back I see what I missed.  You have to forgive yourself, it is the only way to move forward and focus on getting your child everything they need.

DS is 2.5 years old now and is a completely different kid.  The therapies have worked wonders for us.  The main thing is to forgive yourself for what you could have done differently.  Take it one step at a time, one day at a time.

 I keep a copy of the poem below in my purse, reading it has helped me on hard days.

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annibes

I don't know if it was denial or what, but I stalled on an EI evaluation for far too long. I had concerns from 12 months. With me being an SLP, my kid was getting language intervention whether he needed it or not, and he had no words at a year. Everyone said, "he's fine," and pedi had no concerns, so I told myself to stop being a helicopter parent and ease up. At 18 months, same thing. I was concerned. O didn't answer to his name, he didn't really look at us, he had no language except screaming and whining, and his play skills sucked. I brought it up to the pedi again, and to friends and family looking for validation, and again everyone said he was fine. I remember sitting on the floor before his second birthday trying to get him to look at me and just bawling because it was like I wasn't even there. And there I sat, Mommy inconsolable, and O just ran in circles around me. He didn't acknowledge at all that I was upset. I was snort crying, so he probably should have noticed. That's when I think I stopped buying everyone else's opinion that I was overreacting and started to believe my gut. At two years, the pedi put the ball in my court, so I Finally said, "screw everybody" and called EI. They took him in right away and within 6 months they requested to do an ADOS and meet with a developmental pedi. He got diagnosed just before his 3rd birthday and we haven't looked back. So really, my gut didn't fail me, but my logic sure as hell did. And I find that as I work with toddlers who present with spectrum qualities, their parents are have the most reasonable excuses during evals or conferences for why the child did not perform well.

annibes

Sorry for typos and lack of paragraphs. My phone deleted the breaks.

hopanka

The denial never stops, imo. Even almost 6 years post dx, I was still floored when I got the standardized test results back from the school (the test that identifies kids with extraordinary gifts, so they can be accepted into to the gifted programs), and he scored "below average" in 80% of the categories. Granted, I never thought he would rank gifted and these tests were given to all the students (I didn't request them), but I thought that with all the support and intervention and the fact that I'm convinced that he's super smart - he would come out of it as at least "average". So yeah - the punches keep on coming. I think the belief that things are going to be ok is a defense mechanism. If I thought that he's just doomed for life, I would want to jump out the window. In this case, I can keep trucking along and try to help him the best I can.

KelleyBean

This is a really sore subject for me as well. DS developed on time, no flags until 20 months. That was the point that I started bringing concerns about his speech to his pedi. I got the usual "he's a boy, let's wait and see" line. He passed an M-CHAT without issues. At two I could see more flags. His peers were starting to do things that he could not. We went to EI. They said he was speech delayed but not enough for intervention and did not find any ASD flags, so bring him back in six months. By the time we did, his ADS traits were much more obvious (echolalia, socialization, perservations) and I know we lost valuable time. If you have any question, call your county EI and have your LO evaluated. The developmental pedi is good for the medical side but in order to get any therapy through the school system, you have to go through their evaluation process. 

It is a gut wrenching experience and limbo is the absolute worst part. Hang in there.