WWYD? Denied early Intervention but still concerns

BoopadabooNovember 7, 2010

I am confused. I had some concerns about my son so I called Early Intervention. They sent a Speech Pathologist and a SPecial Education Specialist. They said he passed their tests but they still had some concerns from their observations. They said they were going to recommend that an occupational therapist come out. There is only a week left until they will be out of time.

They also made it sound like it was impossible to get your own evaluation. Is that due to money? to the long waits? I guess they made it sound like both. I did't find them very helpful ( I should say one of them was) and DH thinks there is nothing wrong.

I am just not sure what to do. Anyone that has been there have suggestions?

I have obviously been doing a ton of research and I just don't know. He does not talk beyond saying hi. He is 18 month old. He does occasionally exhibit some of the behaviours in the videos. How often do children in the autism spectrum exhibit those behaviors? I can't exactly tell that from the videos.

I found a place in the city (NY) that does seems like it does evals. I am guessing it is expensive, but I am probably going to call them next week.

Here is a link that might be useful: columbia evaluation

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Hey Boop --

What do you mean by "There is only a week left until they will be out of time" ? Because I believe it's 'Birth to 3' and if your son is only 18 months old, there's still lots of time before they're 'off the hook'. (Like many other gov't agencies, they're likely to be under-funded, over-worked, and looking to lighten their caseload. Don't let them do it at the expense of your child.)

Private therapy and assessment is expensive, and not necessarily any better. And there are often long waits, even for folks willing to pay or with good insurance. I think my son's initial evaluations took close to 6 months to schedule...

My best suggestion -- Be persistant. Really persistant. Channel Lynette Scavo (are you a Desparate Housewives fan?) and do not take either 'no' or 'later' for an answer. If the SLP and SpEd person were totally unconcerned, it would be a different matter -- but that's NOT what happened. If you've been doing your research, you know that time matters -- that early treatment offers the best outcomes.

Become a Mamma Grizzly.

You may also want to check out schools and pre-schools for children with autistic spectrum issues. It can be hard to describe, but you (and they) generally 'know it when they see it' and a 'prospective student' visit could be very informative for you. They can also generally tell you who's good (and who's available) in your community for diagnosis and treatment.

Feel free to email me privately if I can help --

- Sweeby, Mom to a wonderful 14-year old with autism and a bunch of other odds & ends...

    Bookmark   November 13, 2010 at 4:35PM
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Thanks Sweeby. I was hoping you would answer. I probably should have just sent you a note. :) I needed some encouragement to keep pushing. It is hard when most people say don't worry about it. I mean that is really what you want to do right? it is comforting to know that my nephew did not talk till he was 2.5 and showed no interest in other kids either.

I thought they said that he has 45 days to be evaluated and if he does not qualify within that time that in order to be eligible for their services I would need to get a Dr. diagnosis. They had told me that date was Nov 15th.

Apparently that is not the case because I just got a call from an occupational therapist and they are scheduling a visit for an evaluation by her. So that is good news.

In the meantime I also scheduled an appt with a new pediatrician as well that seems to have a much broader practice and better reputation then the one I am currently going to. Sometimes location can mean a lot. He is in a much more affluent area by where I work rather then where I live. :)

I guess it is the eye contact, giggling and laughing, chasing the cats around playing, affection (hugging/kissing), showing off for his brothers (they are older though) etc that throw me off. I know there are ranges of autism, but it just doesn't seem like that, but it does seem like something to me. I just don't know.

We took him to gymboree for the first time this weekend and he LOVED it. I expected him to be clingy,and he was the total opposite. He was really not interested in the group thing at the end, and didn't approach the other kids, he was too busy running around, and I know that is an indicator too. When a girl approached him, he smiled at her and gave her one of the toys he was holding, then moved on.

He did get very upset when we would take one of the things he was holding and put it up high on something so he could go get it, but then at other points he would just drop them and move on.

I think they said that holding objects can be a symptom/sign too.

Maybe visiting a school would be a good idea, but I just don't think DH will do it.

    Bookmark   November 16, 2010 at 8:57AM
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"I thought they said that he has 45 days to be evaluated "

That sounds about right -- but that's THEIR deadline, not yours. The needs of the child, you know?...

"I guess it is the eye contact, giggling and laughing, chasing the cats around playing, affection (hugging/kissing), showing off for his brothers (they are older though) etc that throw me off. "

Good eye contact is rare in kids with autism, but it can & does happen. Does making eye contact seem at all strained for him? Or does he look at you at the 'wrong' times and not at the right times? Giggling, playing with the cat and being affectionate go against many of the stereotypes for autistic kids, but certainly don't rule it out. (Our son is *very, very* affectionate, and the happiest kid I've ever met.) Showing off? That doesn't sound autistic spectrum. Typically, kids with ASDs are very UN-aware of how others view them, so pro-actively attempting to manage that perception (by showing off) would be atypical.

"I know there are ranges of autism, but it just doesn't seem like that, but it does seem like something to me."

Autism gets a lot of press right now, so that's the first thing people tend to think of when there's 'something wrong'. But it could absolutely be something different -- which would probably be good news. There are a whole range of speech, motor or development delays/disorders that present similarly to autism at this young age -- which probably means that you won't get a reliable diagnosis (assuming there's actually something to diagnose) until later on. (I still don't think we've got the technically-correct diagnoses for my son, and he's almost 15!)

The thing is -- Your goal right now needs to be getting him whatever help he needs, and being alert to his strengths, difficulties and differences so you can help him move forward at the best possible pace. And while an accurate diagnosis makes that easier and more efficient, it isn't absolutely necessary. Therapy for a child that young (speech, physical, occupational, sensory) looks pretty much the same whether a child is autistic or has Down Syndrome, CP, or many other possibilities. The therapists are trained to do what needs to be done and mitigate the weaknesses they find...

"Maybe visiting a school would be a good idea, but I just don't think DH will do it."

I understand that you want to involve him in this -- to share your concerns and lighten your load. Plus it's absolutely his business... But very often, Dad's in Denial. In fact, "Dad's in Denial" is a catch-phrase that every mother of a special needs child is all too familiar with. For some reason, it just seems to take the Dad's a few more years (yes, years) to get with the program and accept that their child has a problem. It wasn't until *after* our son's autism diagnosis that my husband finally 'got it' that the problem was 'real' -- despite the therapy and special school. Well, not completely -- It was *at* the school visit (different school - one just for autism) that he was able to see for himself that the children in the school for autistic kids were 'different' from typical kids in exactly the same way our son was different -- well, that sunk in. It took him about 10 seconds to point to another child and say "That's John...") We'd never seen it before.

Anyway -- My point is to not over-involve him yet if he's not ready to help you. If you feel deep in your mommy-gut that there really is a problem, then YOU follow up on it. Dad's placating words (which he's hoping will reassure you and keep his family safe -- that's his job, remember?) will actually hinder your efforts to get your son help. They'll delay the process, which is NOT what you need. So go it alone, or with another Mom who has a special needs child. (Do you know any near you?) For what it's worth -- I found the best help online.

Anyway -- If you don't mind sharing, what does your son do (or not do) that has you so concerned? Please be as specific as you can...

    Bookmark   November 16, 2010 at 4:03PM
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Thanks again Sweeby!

In regards to the eye contact, it does not seem off to me. For example, if I have my head in my hands becuase I am tired, he will run over and touch my face and look in my eyes to see if I am OK, or if he knows he is doing something wrong or I am telling him no he will look me defiantly in the eye (and then of course keep doing it whatever he is not supposed to do!) I don't think he looks at me at the wrong times.

I guess you are right and I need to cut DH some slack. He also is taking it personally. Meaning I am sure that he doesn't think our son has autism but that maybe he is speech delayed because of him or something. DH stays home full time with our son. It would be easier for me if he would drive this since I work a lot of hours, but who said life is easy? :)

In regards to what is concerning to me:

-He does not wave bye bye or hello despite us working on it for months and doing it very often in front of him and actually moving his arm for him. Once in awhile he will kind of make a gesture, but it isn't really a wave. He will look at me and smile and grunt, giggle, acknowledge that i have come home for example, but no wave hello.

-He does not point at anything.
-He doesn't look at what you are pointing at.
-He doesn't speak any words really. SOrt of Hi! it is at the right times, but it doesn't exactly sound like Hi. That is pretty much his only word. Once in awhile something like Daddy comes out, but not very often and mostly when he is under duress (like his dad is leaving the room)
-Only about 50% of the time if you call his name will he look at you. If he is trying to pick something up, or escape the room, or figure out a toy, he will not respond or look at you.

The team that came to the house said that it was concerning that most of the time he walks around with something in his hand, and much of the time it is something in both hands.

Also something about self directed play. It is tough to get him to switch if he has something new to figure out. he wants to switch toys when he is ready.

Occasionally he will shake his head, walk on his tip toes and a few other things that I know can be symptoms, but they can be just regular kid stuff too.

That is what I can think of right now. I should really keep a journal! I also want to look up occupational therapists today too so I know a bit ahead of time what she will be evaluating.

    Bookmark   November 18, 2010 at 10:55AM
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From what you've said, the core cause for concern seems to be language -- receptive and expressive.

You know, he's NOT too young for a thorough hearing test -- It's amazing what they do with kids that young, but very valuable information to have, and much easier to get an appointment for than virtually anything else. Just be sure to mention your son's age and low-verbal skills when you make the appointment, and the right audiologist will know just what to do. Impaired hearing (caused by frequent ear infections perhaps?) can *really* mess up a child's languge development, and fixing the hearing can make a BIG difference very quickly. This is the FIRST thing to do -- It's easy, cheap, covered by insurance, and very, very effective if that's part of the problem. If hearing is NOT a problem, that's also vital to know.

The pointing thing is a concern. But his eye contact and empathy seem very normal. The waving? I don't know what to make of it... Could be general disinterest. Could be it is somehow difficult for him. How are his other motor skills? Walking, stacking blocks? (What else is he supposed to be able to do?) Does he seem tired or lethargic in general? Tire easily? Is he unusually flexible? Was he late to sit up? Hold his head up? Crawl?

I've never heard about walking around with something in his hand being a cause for concern, but then I'm most sensitive to the things that were problems for mine...

From what you've said, it doesn't really sound like autism to me. But the specialists who deal with autism are probably the ones you want to seek out, because they'll probably be the right ones to diagnose the 'whatever else it is' if in fact, there is anything.

Is your son in any playgroups? Something like Gymboree would be a fabulous place to expose him to all sorts of new experiences and for you to secretly compare him to other kids his age to see more specifically what he is and is not able to do...

    Bookmark   November 18, 2010 at 10:24PM
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I completely agree with you about the hearing test. That is why I have the appt with the new pediatrician. I am hoping he will be able to do one or recommend me to a doc that will do one.

DS has never had an ear infection though, and does dance to music, laugh at funny sounds in movies, etc, so I don't really think that is it, but I would like to rule it out. I have read that some kids can have actual problems with their mouths too.

I do think the waving is general disinterest. I swear sometimes he looks at DH and I like we are nuts flapping our hands around waving at each other trying to get him to do it. He does do high five.

He is also for sure fully capable of waving. He starting roll/scooting at 4 months. crawling at about 6 months and walking at about 7 months. Oh, and he could hold his head up when he was born. Physical capability I have no concerns with.

He also weened himself down to one nap a day pretty early and is not generally tired. He gets enough sleep I think.

So. We had the occupational therapist come. I think they were both fully expecting to qualify him when they walked in the door.

He did very well on all her tests and for whatever reason much better on the self directed play and the mimicing whatever she wanted him to do. Last time there were 3 adults that came and the two kept going back and forth wiht their tests. I think maybe it was just too much for him or something. He did fine 1-1 with this lady and even stacked blocks for her which I have never seen him do. DH says he has been working on it with him.

She also gave us a form to fill out that tested 10 areas and he did well in 6 but was border line on a couple of things like sensory seeking. She said he was 1 point below on the 4 areas.

Overall, they said they didnt have any concerns anymore. They said that I should watch his speech, and that they would send us a report that would outline what to look for in upcoming milestones and some things to work on. If he does not improve or falls farther behind in speech I should call them back again and they will reevaluate him.

I asked about holding something in his hands, and the therapist said that as long as it does not impede his actions, it is not a concern to her. It is unusual that he does it, but he was able to put the pegs in the whole, stack the blocks, put the cheerios in the little bottle and spill it out, all while holding something in each hand. Who knows what is going through his head!

As you said, they recommended once a week a gymboree or play group to expose him to kids more often which we were planning anyway.

A spot opened in the gymnastics class I wanted to enroll him in.

So I think for now, we will try the gymnastics and swimming once a week, and more frequent visits with his cousins.

Oh - I forgot to mention that. The night before the visit we went to a small birthday party. I don't know what happened, but it was like he was a different kid, or he woke up or something. He was running around the house, not a care in the world, poking at his cousins, watching what they were doing, and at one point they were playing a game for him and I swear he laughed so hard for like 5 minutes that he was squealing.

Even before the lady came that made me feel much better.

I think for now the hearing test, weekly classes and visits and observation on the part of DH and I for 60 days is the way to go.

I also wonder about an eye exam. I have terrible vision and wore glasses starting at 3-4 years old.

It is hard to know if I am relieved, so being niave, or should just go with what I am thinking. I dont' want to be an ostrich which I have to admit I can have a tendancy to do!

What do you think?

    Bookmark   November 20, 2010 at 5:00PM
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"I think for now the hearing test, weekly classes and visits and observation on the part of DH and I for 60 days is the way to go.

I also wonder about an eye exam. I have terrible vision and wore glasses starting at 3-4 years old."

Sounds like a really good plan --
By the way, it doesn't sound to me like you're being an ostrich -- *OR* -- like you're being a Nervous Nellie.
It sounds to me like you're a very astute mom who will figure out the right thing to do for your son.

Remember also that as a special needs mom, I'm absolutely predisposed to believe Moms when they say they sense something wrong. Just because I support your 'problem hunt' doesn't make it any more likely that there is a problem -- just that I know how frustrating it is when everyone else tells you there isn't! If there is a problem, there is; if there isn't, there isn't. And your child is the little boy he already is, whether he eventually gets a label or not. In other words, you already know what you've got - your son. If he gets a diagnosis, a label is all it is -- not a change.

    Bookmark   November 20, 2010 at 10:29PM
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Well, an update on my son. He is now 2, and is still not talking. We had EI out again. He does now qualify. We are also bringing him to a developmental pediatrician.

He is advanced for his age in some things, but behind in others. They have recommended speech twice a week and SI once a week. He will also be getting an evaluation by an occupational therapist again. The team that was out did not include one and they think he has some sensory seeking behaviors and may have some issues there I guess.

Not too sure what to make of all of that. Not really a diagnosis or anything, so I am making myself nuts on the internet today. :)

    Bookmark   June 20, 2011 at 4:02PM
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