no idea what to do

star1123 · October 2012

My son is 22 months, and I am at the point of not knowing what direction to turn. I've posted here before when my son started speech therapy, and got some good advice.

Basically, I've always suffered from hypochondria but when I had my son it went into full gear. I have been to therapy and then even put on some antidepressants. I tried a few and none of them agreed with me so got frustrated with that and had to stop. I haven't been to my therapist in about six weeks because we just moved and things have obviously been stressful with that.

I basically have had a fear he is autistic for probably a year now. I'm exhausted from the worry and frustrated that nobody gets it. We had him evaluated through EI in June, and he qualified for speech and also gets special instruction because of his speech delay.

His therapy is going really well and he has picked up a lot of new words. He has even started to say a few two word phrases - all done, all gone (i guess that doesn't really count though) but he always started saying I in front of things - like I slide or I go. He asked the other day to go home, too.

Anyway, he is doing much better with speech, but we still have a long way to go. He still will rarely answer a question appropriately and will often answer no to everything even when we know he will mean yes. He will sometimes say "yep" though, but not often. He also is hard to understand a lot of the times and says things like "mum" for more. I don't know if this is all normal toddler language, or part of a delay.

Because of our move, he hasn't had therapy in about a week. I had a lengthy conversation with his special instruction therapist and she just raved about him. I asked point blank - do you see any red flags for autism - and she said "no absolutely not at this time." She knows of my worries and in the book we exchange she writes things like "has amazing attention span" "played functional with toys" etc.

To summarize - I worry about him because he still rarely engages me in his play. I feel like he should be wanting attention from me constantly and he doesn't. He doesn't involve me much in what he is doing. Sometimes he will want me to do his stickers with him and gets a kick out of putting them all over my face, but that's about it. The engagement is the big thing. He sometimes walks on his toes and I've noticed he will sometimes cross his index finger over his middle finger when he points to something he wants and can't have it. I know that can be a red flag and I mentioned it to his therapist, but she said she didn't think it was concerning in that context and because he did it so rarely.

I know he has some good qualities - he points to things (although I notice once in awhile he will point to things with his thumb - but again, super rare), he waves bye bye, he is affectionate - asks for hugs now and will come up and say "I hug." I don't see any repetitive type of behavior or other stimming. He sometimes will shake his head back and forth a lot when saying "no" but I don't think it's a stimming thing, more like he thinks it's funny to do an exaggerated no. He doesn't seem to have any sensory issues at all - eats well, doesn't mind any texture, etc. His tantrums seem very age appropriate - the therapist says he gets upset for a reason and that's a good sign because he wants something out of the tantrum and not just having a meltdown for no reason.

He's also refusing to let us really read him books. He used to bring us books all the time and have us read them over and over again. And now he insists on holding them himself and will point to things and tell us what they are. He will ask us to tell us what things are. Maybe it's like him wanting to read to us? I don't know, but I think it feels like just another thing he doesn't want to do with us. Admittingly, I think he also senses something going on with me, because he still brings books to DH so maybe it's just with me.

I guess I am just venting. I am not sure what I am even asking. Maybe advice on what to do. Am I being crazy for worrying like this over his lack of engagement? I guess I would like an honest opinion because I am really tired and sad about worrying like this all the time. It's taken the joy out of being a mom and I hate that. I want to enjoy this. I am willing to try another medication but I think I need to really know it's me with an issue and not something legitimately going on with my son.

star1123 · October 2012

Also wanted to mention - he will sometimes show us stuff. He will bring us a toy or something and show us and proudly tell us what it is. Like today he is having a blast with these calendar card type things and will proudly bring us the one that says Happy Birthday with a cake on it and says "cake!" He will sometimes pretend to eat it and will want us to pretend to eat it too.

He also thinks this one song in the show Super Why is super funny and will look at me or DH every time to see if we are looking, too.

I think these must be good signs as well.

teacherjulie · October 2012

I also have/had all these same fears. My daughter will be three in December. I have had these worries since she was born. She also has a speech delay that we started treating at 20 months she is doing soooo much better now. What retriggerred my paranoia is she had an OT evaluation that I still disagree with but some of it screamed autism to me so we are going to see a developmental pediatrician. My daughters pedi does not have concerns but we never want to look back in 5 years and say why did we not test her?

ridesbuttons · October 2012

I could have writtent this exact post when DS2 was that age. Right to the pointing with the thumb on occasion.

DS2 also attended speech therapy from the age of 18ish months to over the age of 3. He is now 3y9m and his speech is on track (to the point that the therapist suggest we take a hiatus this past June and just do some check points with her).

Virtually all of the red-flag stuff that kept me up at night when DS was 2 has gone. He still is very independent and he still demonstrates more focus than other kids his age (from my observation). But I have to remind myself that he is a person too, not just my child. He gets to be independent if that is his nature, the focus he demonstrates now could serve him well in the future both in school and career.

It's a hell of ride, this parenting gig, isn't it?

Are you crazy for worring? No. You are a parent, it comes with the territory. But take it from me, don't let the worry overwhelm rational thought.

(edit: spelling)

star1123 · October 2012

Thanks I really appreciate that post!

DH tells me all of the time that our son is a person, and he doesn't have a clue why I think just because he's a toddler he should act like every other toddler - because he's his own person. I get that. I do. And honestly - DH and I are both independent people. We both would hate someone to be in our face all the time, and I pretty much require some degree of alone time in order to function. I am in no way shape or form anywhere on the spectrum. Neither is DH. We are actually both pretty social people despite needing some distance once in awhile.

And yes this is one hell of a ride!

lite-bright · October 2012

I will tell you my experience. My DD1 is autistic. When my DD2 was about 15 months, I was panicked because she wouldn't engage with me, she wouldn't respond when I called her name, she rarely made eye contact with me. She'd look at my hands when she wanted me to do something, not my face.

I was convinced that she was on the spectrum as well. We had her evaluated. The evaluators actually said she was slightly ahead for her age socially -- but did note that she interacted differently with me than with the other adults in the room. She was a bit behind in speech, but not enough to require therapy.

Once my pedi (who had referred us) heard that everything with my DD2 was fine, her next question was to me: How was I doing? And I burst into tears because I was horribly anxious and depressed and having terrible intrusive thoughts. There have been studies that show that babies interact differently with moms who are depressed -- and if you read the studies, it sounds similar to autism. Less facial expression, less emotional engagement in those kids when they interact with their moms. But the kids are not autistic, it's a reaction to a mother who is struggling emotionally. My pedi knew this, luckily.

Once I got treatment, my outlook on everything improved and my relationship with DD2 got back on track. All those little quirks I'd worried about disappeared.

Your mental health is important. And it really does have an effect on how your child interacts with you. You need to take care of yourself so that your son has a happy, healthy mom who can relax and enjoy interactions instead of scrutinizing every one and being tired and sad. Kids truly do pick up on those things. He has a therapist who knows him and isn't seeing other warning signs; he's making progress in the areas he needs to. He's in a good place; now you need to get there, too.

So yes, I say from experience that it can be mom who has the issue, not the child. It doesn't mean that your son isn't less engaged with you than he could be -- it just may mean that the issue is with you, not with him. My DD2 definitely wasn't on the same wavelength with me as she was with other people. Not in a huge way, but in those subtle ways that made me convinced she had ASD. And it wasn't that I was making anything up, I really was seeing the lack of engagement -- but nobody else was, because it only had to do with me. So I felt crazy twice over.

I hope that helps.

sheacox · October 2012

I can't evaluate your son as they only way to do that is in person, and i'm not a DR. However, I am a special education teacher and behavior specialist and I specialize in Austim. Not one thing you mentioned raised a red flag to me as even being anywhere on the spectum... not even close. Having a delay in speech is not having a delay in communication. I think you are just being a worried mommy. There are many more things in your post that lead me to thinking he does not have Autism. But I could type for days and not sure you would even see it. if your interested please feel free to message. best of luck

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