Younger sibling of ASD child

greyt00

Big brother was diagnosed at 2.5 years old.  As the months ticked by after he turned 2, I became more and more convinced, so it was not a surprise.  Little brother is 18 months younger.  I know the increased risks, so I'm pretty scared in general about DS2 also having issues.  The 2 boys are really different.  Knowing what I know now, there were signs of DS1 being autistic as young as 1 year old.  DS1 has pointed or waved only a handful of times his whole life, so I desperately wanted DS2 to point and wave.  That seemed like a big milestone for early on, so I really wanted it.  He finally started waving at around 13 months but was not yet pointing.  The red flag is no pointing or waving at 12-13 months.  He finally started pointing right around 14 months.  I just need some hope, that there are other NT children who waved and pointed a little later, and are just fine.  Are there????  As compared to DS1, DS2 is much more interactive (looks at us more, hands us things, etc.), has varied interests, doesn't get hung up on things (obsessed), plays with a large variety of toys, knows how to play with them, has better fine motor skills, plays more with the toy as a whole, pretends to talk on the toy phone sometimes, rolls car around, signs "more", pretends to brush his hair and wipe his nose.  He started pushing his arms through shirt sleeves and stepping out of pants a couple months ago, at least.  DS1 didn't start that until much later.  He does not have very many words, but I think he tries to say things all the time and it is just very unclear.  He has said "all gone", "outside", and "hi."  No mama or dada yet.  I guess one concern I have is that he is not cuddly.  He never has been.  While that is not a red flag listed on my son's clinic's web site, I have read it as a flag elsewhere.  Now there are some times when DS2 wants to be held.  He just never seemed to like it as a way to get to sleep.  He doesn't like to be held close.  Sometimes he wants to sit on my lap.  I really haven't noticed any tactile/sensory issues with him, though.  And DS1 is EXTREMELY cuddly!  The other thing that worries me is his eating.  We have horrendous problems with DS1 diet, and DS2 has just gotten pickier and pickier.  Started off great at 9 months (when we started many table foods) and around 11 months dropped a lot of foods and here recently, just dropped his 2 mainstays (broccoli first, then scrambled eggs).  I am even scared of what the replies to this thread will be like so I procrastinated on writing this.  Please be gentle.  For the most part these 2 boys are opposites.  But even if DS2 seems OK now I'm terrified of regression.  I don't know how I will deal with both having major developmental problems.  This is me looking for hope, not looking for excuses "oh maybe he isn't."  Because I won't be in denial if I really think something is wrong.  I think I've painted an accurate picture of a fairly normal child.  But sometimes I also feel like I'm losing my mind and he's doomed to having ASD.  I admit to being paranoid.

lite-bright

I know the feeling. I was incredibly paranoid about DD2's development; DD1 got her autism dx on DD2's first birthday. 

She seemed off to me, and she didn't have the same # of words that DD1 had had (her speech didn't really fall into the areas of delayed until around 2.5), wouldn't make much eye contact or respond to her name, and I was super paranoid about pointing & waving, joint attention, etc. 

We had her evaluated at 15 months. By that point, I was utterly convinced she had ASD as well. Turns out, while she was slightly delayed in her speech, she didn't require services (was entirely caught up and then some by 18 months with no help) and she was actually a bit socially advanced -- with other people. The evaluators noted that her interactions with me were markedly different. 

My pedi, luckily, was up on her research and knew that kids of moms who are depressed can exhibit some ASD-like behaviors -- less eye contact, less facial expression, less engagement. After the eval came back as typical, my pedi asked me how *I* was doing -- and I promptly burst into tears. I'm not saying this is your situation, but it's worth thinking about how well you're taking care of yourself and how much anxiety/depression might possibly be shaping your view of your child and even the behaviors you're seeing. I totally relate to feeling like I was losing my mind, because I'd bring these things up to DH and others and they just didn't see them. Because it was something off in me/my relationship with DD2, and so she *was* being perfectly typical with other people. And meanwhile I'm feeling exactly like I was when we were going through evals with DD1, trying to convince people that something was wrong and them brushing me off. 

I was convinced something was wrong. And I was right, but that something was with me, not her.

Once I got on a/ds for post-partum anxiety & depression (yes, at 18 months), my relationship with DD2 got back on track and I haven't worried since. 

Getting a professional's take is my advice. Have him evaluated by EI. It was the only thing that was going to make me feel better, knowing one way or the other. If he's fine, the peace of mind is worth it. If he's not, then at least you know where you stand. 

greyt00

I don't really feel like anything is wrong with our relationship.  I feel like he is pretty interactive with everyone.  He makes plenty of eye contact.  Of course, DS1's pedi neuro wants to evaluate him (when she saw him he wasn't babbling much and was not pointing or waving) but I don't want her mitts anywhere near him.  I do not like her.  I think she has a bad reputation -- if you are in the ASD boat in Houston, you probably know who I am talking about.  If we end up going down this path with DS2, I will have to consider other doctors.  

I really don't think I am depressed, but I could be wrong.  Things are a lot better now that I am done pumping and done with that horrible MSPI breastfeeding diet, and I'm on meds to clear up my skin, after YEARS of that problem taking a back seat to TTC, pregnancy, and BFing.  This is not to say that I do not value your feedback.  I think I probably will get an eval with ECI soon, if for nothing else than his diet.  We are already paying the sliding fee for DS1 (until he is 3) so the only cost is my time (which comes at a super premium, but that's how it goes....)  The problem is trying to get time off work.  I'm pretty tapped out save a few days around the holidays which I refuse to sacrifice.  I have filled nearly every last vacation and sick day with appointments, mostly for DS1.  That depresses me a little. 

When you say eval, do you mean EI?  They don't diagnose any conditions.  Though obviously with someone like my DS1, they would come up with several significant delays (and they did when they saw him a month before his ASD eval).  So while they won't say he has any condition you would get the picture painted for you pretty well I guess.  Or find out about any isolated problems.  If ALL DS2 has is an isolated speech delay, I would be ecstatic.  My insurance doesn't cover CRA*.  Even speech therapy would be very expensive (we are starting to pay for private sessions in addition to ECI now for DS1) but if I get a small problem addressed now with ECI, it won't cost me much.  I guess part of me is scared they will hit me with something I don't see coming, or don't think is coming.  Part of me wants to live in denial for awhile longer (IF something is wrong, which right now, I don't feel there is much if any evidence for -- just stupid stats).

greyt00

Thanks for the reply.  I will respond more later when I'm not at work (or when I get time).  Regarding DS1 doctor, THIS: "no bedside manner"

HORRIBLE BEDSIDE MANNER!  DH and I both agree.  Ugh.  Hate the woman. She was better in our 2nd appt than the first, but there were 2 guests sitting in on the appointment (probably students), and I think that's the only reason.  Too bad, because the nurse coordinator is lovely.

And I don't like what you said about affected siblings having totally different traits.  Grrrrrrr!  ;-P  But if he has to be affected, and it's less severe, that's something.  And maybe he's NOT even. 

greyt00

How do I find a developmental pediatrician?  Is that their official title?  I don't know if my regular pedi would be helpful because they give out a sheet for other doctors they recommend, and I think DS1's awful one plus the other one which has the insane wait list (like 1 year) are the only ones for development.

funchicken

greyt00 said:

How do I find a developmental pediatrician?  Is that their official title?  I don't know if my regular pedi would be helpful because they give out a sheet for other doctors they recommend, and I think DS1's awful one plus the other one which has the insane wait list (like 1 year) are the only ones for development.

Yes, "developmental pediatrician" is their official title, and 12 month wait is pretty standard for the good ones especially if there are very few in your area.  We found ours at our Children's Hospital, and I think we had to wait 9 months for our first appointment.  How old is your younger DS?  I think getting on the waitlist for a develpmental pediatrician while starting the process for an EI evaluation would be the way to proceed.

greyt00

Don't they typically require a referral or something from the pediatrician?  My insurance does not require referrals, but for DS1 appointment I had to get a request from the pediatrician for them to do anything.  The way things stand right now, she won't give me one because no one had any concerns at his last appointment.  That being said, he is 14 months old and his 15 month appointment is not that far away, so we could discuss it then.  And I know I don't need anything from a doctor to proceed with ECI.

So you tell me -- from what I stated about his behavior, does DS2 seem pretty typical?

mommy0411

Hi! I don't really have any advice but I completely understand your worry. My older son was diagnosed when I was 7 months pregnant with DS2 at the age of 21 months. I look at every single little thing DS2 does and at this point I am terrified we are heading down the same road. dS2 seems much more engaged and social but he isn't meeting gross motor milestones and DS1 did the same. I think getting him evaluated by ECI is a good plan for nothing but to put your mind at ease. Everything I have read says kids need to not point by 15 months for it to be a red flag. And I have definitely considered seeking professional help to deal with my anxiety and stress, I haven't had the courage to yet. Parenting these kids is hard. Also we are in Dallas and our children's hospital has an Autism and Developmental disabilities center (my son has his appointment in 2 weeks). You may want to see if Texas Children's does.

greyt00

We are currently with UT (the lady I don't like).  The other option on my pedi's list is "TX Children's/Baylor".  But being in Houston I should have as many choices as anyone, so I can check around. 

Regarding gross motor, DS1 was ahead generally, though the only real early thing he did was walk at 10 months.  That's early but not super early.  I walked at about the same time.  DS2 has been much more average w/gross motor skills (walked a few steps with encouragement at 11 months, and really took off with it right at 1 year).  Sitting up, crawling, all were pretty average.  DS2 is much better at fine motor and figuring out how to do things.  I don't see the issues with motor planning that I'm now aware of with DS1.  I feel like I can cross out a lot of issues, but that doesn't mean there aren't other ones I don't see yet.

I wish you all the best of luck, I hope DS2 doesn't have ASD or any major delays! 

I'm sure I could benefit from some professional help, but who has the time?!  I already come in to work 2 hours late once per week to take DS2 to OT.  He goes TWICE per week -- DH drops him off and grandpa picks him up for the second one.  He gets ECI (speech plus behavioral) delivered mostly at day care though I try to leave early once per month and have a session at home.  To get him to ABA therapy (when we FINALLY get a start date) I won't even be driving him, Grandpa will, for as long as possible, so I won't be late to work.  DH thinks he can pick him up.  Plus we have another child!  How are we supposed to manage this with 1 SN child much less more than 1 with SN???  Plus, I really need to look for a new job.  And my insurance doesn't cover anything except OT, and they even stopped paying for that, pending their "investigation."  Awesome.  Thank heaven my grandparents can and want to pay for ABA, or we'd be SOL.  I just feel so cra**y not being able to do it myself.  DS2 has to be typical, he has to be, he has to be.

Ncstatemom

Sorry for jumping in...I don't have a SN child but was looking for info on CF on this board for my niece.

Regardless, this post struck a cord with me and I wanted to reply.  I have a NT 4.5 year old boy and a 15 month old DD.  I am 99% sure DD is NT but of course, she's young so can't be 100% certain.  

Anyway, I read a post when my DD was 12 months that she should be pointing or she was basically ASD.  I freaked out and researched a ton.  She didn't have any other signs but everything I read made it sound like this was THE sign.  

It seems to me in your post that pointing and waving late is your big concern so I wanted to mention that DD started point about 13 months (she did wave at ~ 11 months).  More importantly, she is now at 15 months pointing with joint attention.  Meaning, she's pointing to something and then looking back at me to make sure I see it.  

Everything about her points to NT - and she was late with this milestone.  So, yes, I think it's very possible for your DS2 to be NT even with late pointing

funchicken

We didn't need a referral to schedule an appointment with our Developmental Pedi, but I'm sure they all have their own policies.   

It sounds like you're under a lot of stress managing your older son's therapy, and it probably would be really good if you could find a support group or therapist to talk to.  None of us can tell you whether or not your younger LO is NT, but it sounds like he's doing a lot of great things.  This board is a great source of support and info.  I hope things start to get a little easier for you   

greyt00

Ncstatemom said:

...I read a post when my DD was 12 months that she should be pointing or she was basically ASD.  I freaked out and researched a ton.  She didn't have any other signs but everything I read made it sound like this was THE sign.  

It seems to me in your post that pointing and waving late is your big concern so I wanted to mention that DD started point about 13 months (she did wave at ~ 11 months).  More importantly, she is now at 15 months pointing with joint attention.  Meaning, she's pointing to something and then looking back at me to make sure I see it.  

Everything about her points to NT - and she was late with this milestone.  So, yes, I think it's very possible for your DS2 to be NT even with late pointing

Thank you for addressing this specific thing!  I am looking for hope.  While I won't use anything as an excuse to look the other way, I need HOPE to get me through the waiting period (I am going to call ECI and start looking for a dev pedi).  I'm glad to hear that some kids are late to point and wave and seem normal otherwise!  DS2 points and sometimes looks at me.  He looks at me a lot in general.  I feel in my gut that he is typical, but I'm letting the increased risk make me so paranoid.  But I also don't know much about kids at all, and I feel like I have no idea what typical is, so maybe I'm missing other stuff, just like I missed stuff with DS1.  All I have to go on are milestone lists and hopefully NOT checking anything off on the red flags.

Thanks to all for the support, too.  This is the first time I have posted about DS1's diagnosis.

greyt00

I know.  Like I said, I'm not hiding from it.  I'm going to call ECI and look for a dev pedi.  I can't seem to win, people say I should get therapy, and here I am trying to find something to be happy about, and that's not a good thing, either.

greyt00

Actually this is my 2nd post mentioning DS1 has ASD, I forgot about the frst one!  My memory is so bad....

funchicken

-auntie- said:

greyt00 said:

I know.  Like I said, I'm not hiding from it.  I'm going to call ECI and look for a dev pedi.  I can't seem to win, people say I should get therapy, and here I am trying to find something to be happy about, and that's not a good thing, either.

There's an old saying on airplanes and in Autismland- you have to put on your own oxygen mask before assisting others. 

I think this is what @light-brite was suggesting- that you need to take care of yourself in order to be truly effective as a parent. Yes, it's good to look for positives, but you want to be in a place where you can roll with the good and the bad without it dictating your mood.

I couldn't agree more with this. Therapy can give you tools to help deal with the ups and downs, the uncertainty, the worry. Based on the things you've written, you're juggling a lot. It doesn't have to be a huge commitment--I go once a month. It's great to know that I have that time set aside to talk about anything I want without getting interrupted.