Coming out of lurking

newbee36

I've been a lurker on this board for a long time and finally decided to introduce myself now, as my heart is broaken and I need to talk to someone who would understand how it feels to be in my shoes. We still don't have a diagnosis, which is the reason I've been only lurking here, but I am very positive that my almost 15 month old is on the spectrum. I started bringing this up to my family and DS's Pedi since he was 7 months old. At that time, everybody thought I am just imagining things, I am spending too much time on internet, and that he is on track with everything. The source for my concerns, were periods when he was completely quiet and was zoning out. He would just stare through the window. He was not responding to my voice, he would just be fussy. These periods lasted 3-4 days. And then he would be back to his normal, not a sign of the off-behavior. So that first happened when he was close to 7 months old and then second time at around 9 months and then around his birthday.
Now at 14.5 months: he knows who mama is, he knows who dada is, if you ask him he would sort of point to us. He would also recognize us in a photo, but he never ever calls after either of us; he has maybe 20ish words (most of them sound weird. I think he is trying hard but he has hard time pronouncing. For example, for "cone" he says "cn"), he also does a little bit of sign language, but often he does not realize that he can tell me that he wants food, rather then fuss around me. If I do ask him if he wants to eat however, he would give me the eat sign and we are all happy. Sometimes he does tell me unprompted, but this is rare; Lately he's been banging his head off the high chair or on a pillow (he does do it on hard surfaces); He doesn't play with toys much. If I play I may get him into it, for example if he seas me doing a puzzle he would come and join me, or doing shape sorting, rings stalking,... But if I don't initiate that, he would mostly come and bother me; Also, sometimes he would spend so much time working on certain thing, until he gets it. Once he succeeds, he makes a joyful sound, shows me the "done" sign and is looking for my reaction. But sometimes he gets frustrated that he is not succseeding.
He understands a lot of what we are saying to him, I think. He obeys commands like go there give me the sunglasses, would you please bring me Pooh, go get the ball, go get a book we will read together,...; He knows many body parts, he knows sounds that animal make, he is a quick learner; My biggest sign that he is on the spectrum is that he is not social at all any more. When we go at a playground, he does not take interest at other kids. He would look at them, notices them, but does not smile or say hi/bye to them. And he has been going in an in-home day care for almost 3 months now. He rarely says hi/bye to adults as well, and I am not sure if he has the concept of it. He does blow us a kiss though,when he is on his way out. His eye contact is still pretty good, and sometimes can even be very intense if he expects me to tell him something..., but there are times when he ignores me calling his name (his hearing is good, as he always tells me with a sign when he hears voices or some other noises from outside). There are days when he is 100% responsive, and there are days when you have to work harder to get his attention.
Today was one of the harder days for me. I took DS to daycare, but realized that I forgot his milk. So I went home and went back there to bring milk. DS was standing by the toy box, next to another boy who is about 2 months older than DS, and were both holding some toys. They both turned around when I opened the door. DS did not show any reaction. Stared at me for about 2 sec. and then went back to his toy. Then I said "bye", and the other boy waved good-bye to me. DS did not even turn around. It hurts my heart, it hurts my body, everything hurts. I know I have to accept the situation and move forward, but now I am just a wreck of emotions. And still have to do my everyday duties.
We have an appointment for evaluation at the end of October ( I insisted that he needs to get evaluated). I really hope they give us a diagnosis so we can start talking action. From what I hear, it is highly unlikely that they will give a dx this early, and will tell us to wait and see instead. I think waiting will kill me, but I am not sure what I can really do. DH is on the same page with me, supportive and careing, so that's helpful and I am grateful for that.
Thanks for reading, if you got this far. 

kcisthebombdotcom

Welcome over here.

A lot of what you describe sounds a lot like my daughter especially with the zoning out and being quiet. At 15 months old, she wouldn't wave hi or bye to other children and spent most of her life in her own world. She did not play with toys--would just mouth them. She had about 10 words but hardly ever listened to instructions.

I had her evaluated at 17 months old and as suspected, she was diagnosed with delays in language. I had some sensory concerns with her and brought them up to my older child's OT. They suspect she has some auditory processing difficulties (she had fluid in her middle ear for quite some time)/sensory processing difficulties which wasn't surprising as my older child has them and I had sensory issues as a child as well.

At 20 months old she is a totally different kid. Doing lots of sensory activities during the day have really made a huge difference in her behavior. She babbles all day long now, signs and waves more, and those moments of being in her own world are becoming rarer and rarer. She is much more interactive with playing with toys so I now can play with her and get her to mimic sounds so she's talking a lot more. We still have a ways to go but we're a whole lot more optimistic than a few months ago.

My pedi/EI team are all in agreement that she isn't autistic and she scored at low risk for autism on the mchat, but we're still bringing her to a neurologist to err on the side of caution. We're playing the waiting game here too.

You're definitely on the right path of getting your LO help. It can make a big difference. Best wishes that you have some answers and can get your LO the help he needs.

gimmietimmies

Hi sweetie, not much to add, except hugs. Auntie will surely have the best answer.

newbee36

Thanks for your input, Auntie. Highly appreciated! I often read your posts and always admire your knowledge and big heart-ness. I was hoping for an input from you.

-auntie-:

Normally I encourage moms to trust their gut. So I'm impressed that you are sticking to your guns and getting an eval. That's a great first step. Will your appointment be with a developmental team that includes a dev pedi?

The appointment is with a team that includes a dev pedi. I am hoping they are good, because we have not much choice here in NM. One of my concerns is that the active observation is only 2 hours, so I am not sure how much they can get out of it. I am afraid they'll miss something.

Some of the behaviors you describe are concerning, but not necessarily a slam-dunk for autism. Young toddlers are a very quirky bunch. But some of the stuff you mention would concern me, too. The zoning out could be an absence seizure; you might want to film one of these for your developmental pediatric appointment. The ignoring you while doing something could be hyperfocus which is more often associated with ADHD.

I was thinking of taking videos. The zoning out is happening a lot less frequent now though. Hyperfocus more often, however.

Has your PCP pedi ever done the M-CHAT? This is generally done at 15 months as part of a well visit. You could even "take" it at home if it concerns you.

https://www.m-chat.org/

The Pedi has not done that, as DS is not 15 months just yet. I did take the M-CHAT and it said that there are some concerns... 

Somethings to remember about MCHAT is that the questions are meant to be specific- pointing means "index finger out", waving in the general direction of something doesn't count, nor does taking your hand and walking you to what they want you to get them. The other piece is that MCHAT is a screening tool, not an evaluation tool. It's a pretty blunt instrument- like plucking your brows with an axe. You're going to catch a lot more than just stray hairs. And sometimes it misses. My DS, who has autism, passed MCHAT. Twice. Of course it was 1994 and 1995, a time when the CDC consider autism "rare" with a reported previlence of about 1 in 1000.

In the M-CHAT I gave an answer "no" for pointing, because he rarely uses his index finger. He does everything with his tumb! Whatever I do with my index finger, he does it with the tumb. For exapmple when I hear a noise I tell him by pointing to my ear with my index finger, he does the same action by using his tumb. He often tells me when he hears something (tunder, rain, plane,..) by putting his tumb on his ear.

Given how young your son is, you may not get a dx at this appointment. Your team may say he has behaviors consistant with an ASD (or something else) but they want to revisit the dx in a year or later. At this age, services can be delivered under his delays without one, so it isn't a huge deal to work without a specific dx until he's old enough for a comprehensive ASD evaluation to R/O or dx it. I know you really, really want to know. Now. But it's very possible you will leave the appointment with the big question unanswered.

 I am releived to hear that we can get services without a definite dx. Thank you Auntie, a ton!

newbee36

KC_13, I am so glad your DD is progressing well. It is great that she has changed that much and that she is mimicing sounds.

DS imitates actions, a lot. He even tries to imitate sounds, but they just come out very weird from his mouth. I understand babies don't talk clearly, but my baby is pronouncing the consonants rather then the vowels. How weird is that??? We are bilingual family, but I think in his case there is a lot more to it. He is extremely happy to tell you the names of objects that he does know. 

GT, hi! Long time no see:) I still check the Parenting 35 board but don't post as often. 

kcisthebombdotcom

-auntie-:

Normally I encourage moms to trust their gut. So I'm impressed that you are sticking to your guns and getting an eval. That's a great first step. Will your appointment be with a developmental team that includes a dev pedi?

Some of the behaviors you describe are concerning, but not necessarily a slam-dunk for autism. Young toddlers are a very quirky bunch. But some of the stuff you mention would concern me, too. The zoning out could be an absence seizure; you might want to film one of these for your developmental pediatric appointment. The ignoring you while doing something could be hyperfocus which is more often associated with ADHD.

Has your PCP pedi ever done the M-CHAT? This is generally done at 15 months as part of a well visit. You could even "take" it at home if it concerns you.

https://www.m-chat.org/

Somethings to remember about MCHAT is that the questions are meant to be specific- pointing means "index finger out", waving in the general direction of something doesn't count, nor does taking your hand and walking you to what they want you to get them. The other piece is that MCHAT is a screening tool, not an evaluation tool. It's a pretty blunt instrument- like plucking your brows with an axe. You're going to catch a lot more than just stray hairs. And sometimes it misses. My DS, who has autism, passed MCHAT. Twice. Of course it was 1994 and 1995, a time when the CDC consider autism "rare" with a reported previlence of about 1 in 1000.

Given how young your son is, you may not get a dx at this appointment. Your team may say he has behaviors consistant with an ASD (or something else) but they want to revisit the dx in a year or later. At this age, services can be delivered under his delays without one, so it isn't a huge deal to work without a specific dx until he's old enough for a comprehensive ASD evaluation to R/O or dx it. I know you really, really want to know. Now. But it's very possible you will leave the appointment with the big question unanswered.

Kind of unrelated auntie--but how old does a child have to be for a comprehensive ASD eval?

I've always had that nagging worry about my DD in the back of my head because of the receptive language delay, though I realize that plenty of kids have delays that aren't on the spectrum. We're going to a neurologist I'm guessing somewhere around her second birthday. Would they be able to give an accurate diagnosis at that age?

I also hear that a lot of kids can't be diagnosed at a young age but get diagnosed later down the road. I know that good social skills in toddlers doesn't mean that they can't get a dx later on. Do they just lose the social skills later on at some point in time?

Assembly_Reqd

newbee36:

..., but there are times when he ignores me calling his name (his hearing is good, as he always tells me with a sign when he hears voices or some other noises from outside). There are days when he is 100% responsive, and there are days when you have to work harder to get his attention.
Today was one of the harder days for me. I took DS to daycare, but realized that I forgot his milk. So I went home and went back there to bring milk. DS was standing by the toy box, next to another boy who is about 2 months older than DS, and were both holding some toys. They both turned around when I opened the door. DS did not show any reaction. Stared at me for about 2 sec. and then went back to his toy. Then I said "bye", and the other boy waved good-bye to me. DS did not even turn around. It hurts my heart, it hurts my body, everything hurts.

I think you need to have his hearing tested. My kid also tells me or reacts when he hears stuff all the time. (even without wearing his hearing aids) If I didn't know he had the hearing loss since birth I would be hard to convince he had a problem hearing. His lack of speech I can attribute to his brain abnormality. The hearing loss is just an added hurdle.

The thing with both boys turning to you coming in the door could have been him reacting to the visual stimulus of the child next to him turning and not necessarily to the sound. He may not have turned around to say "bye" like the other child because he couldn't hear you. Some children also hear one parent (usually father) better than the other(mother) because the voice pitches (frequencies) are different.

I would bring up these concerns along with missing the constanants when he talks to a pediatric audiologist. You are probably going to have to do a hearing test anyway prior to seeing a doctor for behavioral concerns. Good Luck and let us know how it goes!

Assembly_Reqd

and also, is there any chance that he has some fluid issues going on that are creating a conductive hearing loss?

This would also explain why sometimes he reacts better to sounds than others. Again, an audiologist should be able to test him for fluid in his ears....Just a thought.

newbee36

Assembly_Reqd:

and also, is there any chance that he has some fluid issues going on that are creating a conductive hearing loss?

This would also explain why sometimes he reacts better to sounds than others. Again, an audiologist should be able to test him for fluid in his ears....Just a thought.

His hearing was tested only when he was born. It is possible he has some fluid issues I guess, because sometimes it seems like he looses balance for no reason. I am not sure we can get that checked before the evaluation though. I should ask the Pedi for a referral probably. Thanks for pointing that out. I always just assumed that his has no hearing issues.

P.S. I like your signature photo

Assembly_Reqd

Thanks! your little one is a super cutie!

The hearing test in the hospital is a simple screening unless your child was in NICU and had an ABR which is more diagnostic. My understanding is that the screenings done in the well nursery use a series of clicks at different decibels.  Around 90 percent of the children who get a "refer" or "fail" end up passing the more rigorous testing at the audiologist.

It is very possible to have fluid in the ears and have no ear infections to give you a clue. We discovered Nate's high fluid by accident via MRI. For some reason his tympanograms were not consistently flat enough to cause alarm.   Maybe the ears kept filling and draining just in time for the test. The location of his ears should have given some expert a clue. (they are low set). After the MRI report, I called the ENT and insisted on tubes. He managed to gain 10 decibels which is a lot for a kid whose hearing levels rest right on the cusp of most spoken language.

kcisthebombdotcom

newbee36:

Assembly_Reqd:

and also, is there any chance that he has some fluid issues going on that are creating a conductive hearing loss?

This would also explain why sometimes he reacts better to sounds than others. Again, an audiologist should be able to test him for fluid in his ears....Just a thought.

His hearing was tested only when he was born. It is possible he has some fluid issues I guess, because sometimes it seems like he looses balance for no reason. I am not sure we can get that checked before the evaluation though. I should ask the Pedi for a referral probably. Thanks for pointing that out. I always just assumed that his has no hearing issues.

P.S. I like your signature photo

When we started the EI process, the first thing they wanted done was hearing checked before they would even come out. I would push for it since it's the simplest thing to rule out.