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#1 of 15 Old 05-02-2012, 11:41 AM - Thread Starter
 
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Hi, I’ve posted here and there but I’ve never written out our whole story, and I’m struggling. I really have so many questions that I’m not even sure what the “right” questions are, but I’m hoping some moms will be willing to help me sort it out. I love my son beyond measure, and like everyone here I just want my child to have a happy life and to be sure I’m making the right choices and doing everything possible to make that happen.

 

My concerns about my incredible, now 27-month-old son began on Day 1. As a newborn he had no interest in faces. There was no eye contact, and none of that hard-wired imitation that most infants do.

 

My concerns were brushed aside by professionals and friends alike for many months. I finally got us hooked up with a local research/clinical institution and found professionals who validated my concerns. We were placed in a research study that ended a year ago but that included regular, ongoing assessments.

 

The last assessment was in December. Last week (don’t ask) I finally learned the actual results of his ADOS: he met all the cutoffs for autism.

A couple of weeks ago, we saw a developmental ped at the same institution. She said she did not want to make a formal diagnosis at this time (and I wasn’t expecting or asking for one), but we will continue to see her. She observed that he has a “mixture of concerning and reassuring behaviors.”

 

Meanwhile, he is a joyful boy, very verbal, engaging, loving, gentle, persistent, pretty adaptable, good sense of humor, and a good eater and sleeper. He has been described as charming, interactive, and charismatic.

 

Also, while his eye contact with me is OK, it’s still not great with others. His joint attention/referencing is not good. He uses some gestures but not as often as most children his age typically do. He has both restricted interests and some restricted play (more on that below). He reverses pronouns (you and I) and has some echolalia, mostly delayed rather than immediate, though also plenty of spontaneous, appropriate, and very communicative speech. He is very stressed out by unfamiliar situations (eg, the testing environments). He pretty much refuses to say hi to anyone and gets upset if I talk to someone or hug someone. He has a few sensory-seeking tendencies but really they’re pretty mild even compared with many toddlers I see, with the exception of his terror of the vacuum cleaner

 

One area where I would love some suggestions is whether anyone has found strategies that have helped with some of the areas of concern? I want him to feel valued, not like he’s doing something “wrong.”

 

But another question that confuses me is, how much should I be trying to address the concerning areas, versus focusing on his strengths and building on those? Will it be stressful for him to try to increase his joint attention, for example? But without improving it, will that set him back in terms of being prepared to learn and grow?

 

Another question is around the accuracy or precision of the test results, and just overall what do they really mean? When he is stressed out, as he was during the assessments, his spectrumy behaviors increase significantly. But that’s probably true for anyone being assessed? So what offers the better picture or prediction of where he really is – the test, or his everyday environment?

 

And, while I have always been the one with the concerns and so I expected the test to put him on the spectrum, I admit I was surprised that it put him square in the autism category, as opposed to ASD. But maybe I’m misunderstanding what that means? The reason I was surprised is that his communication seems so strong that I always thought he would be considered high functioning, whatever that means. (Harper Rose recently posted a link to https://www.facebook.com/autismdiscussionpage, for which I’m very grateful, but even after reading it I’m still confused.) I’m still not clear on the relationship, if there is one, between where you are on the spectrum and where your functioning is, or really what either of those designations really mean. By the way, another test they used found his expressive and receptive language both in the very high range.

 

I guess I’m wondering what all of this predicts for my son in the future, and maybe that’s something that can’t be known right now – I’m ok with that, but trying to sort out what is most important for us to do right now.

 

In terms of interest and play, he has a very strong interest in cars, trucks, and trains. If there is one around, it’s like he HAS to play with it, almost like a compulsion. He drives them back and forth and does some imaginary stuff with them, like has them talk to each other, though that’s pretty scripted. He also looks at toys closely. It’s much more challenging to transition him from playing with vehicles than from playing with other toys. Taking turns with vehicles is also much more of a challenge. In the last couple of weeks, his fantastic daycare provider and I agreed to experiment with removing all vehicles from her house and ours. He has barely asked for them, and he seems happier and his play has expanded greatly. In particular, he has become much more interactive with his peers at her house. But, are we making it worse in the long run, creating a forbidden-fruit situation? Will he just transfer his intense interest to something else? Is it “bad” to have intense interests?

 

One of the interventions we are considering is occupational therapy, to help diversify his play. Can anyone explain how this works?

 

I am going to pursue anything and everything for him that feels right. I’m also self-employed and buy our insurance myself, and under our particular plan this probably means paying a lot of out of pocket. I don’t want this to be any kind of barrier, but at the same time it’s our reality.

 

My deepest gratitude to anyone who has read any of this. The stakes are so high, and this feels so overwhelming. It helps just knowing there are other families out there who know what I’m talking about. Thank you.

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#2 of 15 Old 05-02-2012, 01:30 PM
 
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I wish I could be of better help. We didn't do any therapies because my husband is also self employed, no health insurance, no medicaid, and there's no way in the WORLD I'd have afforded anything out of pocket. I did everything on my own. And just... instinctively, I guess. I worked with him the best I could and I think we've been pretty successful so far.

Do you have local support groups? Look for all kinds of groups, online and in real life, to find the right support. That will help immensely as you look for the right therapies and stuff.

 


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#3 of 15 Old 05-02-2012, 02:15 PM
 
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Lots of stuff here. Let's see if I can help at all:

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Originally Posted by baltmom View Post
Also, while his eye contact with me is OK, it’s still not great with others. His joint attention/referencing is not good. He uses some gestures but not as often as most children his age typically do. He has both restricted interests and some restricted play (more on that below). He reverses pronouns (you and I) and has some echolalia, mostly delayed rather than immediate, though also plenty of spontaneous, appropriate, and very communicative speech. He is very stressed out by unfamiliar situations (eg, the testing environments). He pretty much refuses to say hi to anyone and gets upset if I talk to someone or hug someone. He has a few sensory-seeking tendencies but really they’re pretty mild even compared with many toddlers I see, with the exception of his terror of the vacuum cleaner

 

One area where I would love some suggestions is whether anyone has found strategies that have helped with some of the areas of concern? I want him to feel valued, not like he’s doing something “wrong.”

 

But another question that confuses me is, how much should I be trying to address the concerning areas, versus focusing on his strengths and building on those? Will it be stressful for him to try to increase his joint attention, for example? But without improving it, will that set him back in terms of being prepared to learn and grow?

 

I think everyone has their own bias based on their experiences with their own child. I like Floortime and RDI to tackle these issues. Both are parent-led therapies and are fairly naturalistic, so they will only help -- ie: they won't make him feel like he is doing something wrong. They focus on slowing down the interactions, emphasizing the emotion sharing and relational aspects, modeling, and elaborating on the skills he already has. You can check out books for both of these. RDI has an expensive system, but I think you can get the basics by just reading and working on it yourself.

 

My sense is that these approached encourage parents to look for the growing edge and not to push beyond that too fast, so it shouldn't stress him and inhibit learning.

 

Originally Posted by baltmom View PostAnother question is around the accuracy or precision of the test results, and just overall what do they really mean? When he is stressed out, as he was during the assessments, his spectrumy behaviors increase significantly. But that’s probably true for anyone being assessed? So what offers the better picture or prediction of where he really is – the test, or his everyday environment?

 

And, while I have always been the one with the concerns and so I expected the test to put him on the spectrum, I admit I was surprised that it put him square in the autism category, as opposed to ASD. But maybe I’m misunderstanding what that means? The reason I was surprised is that his communication seems so strong that I always thought he would be considered high functioning, whatever that means. (Harper Rose recently posted a link to https://www.facebook.com/autismdiscussionpage, for which I’m very grateful, but even after reading it I’m still confused.) I’m still not clear on the relationship, if there is one, between where you are on the spectrum and where your functioning is, or really what either of those designations really mean. By the way, another test they used found his expressive and receptive language both in the very high range.

 

I had a similar concern about my son's ADOS results. He is so subtly affected that most people don't even see his issues, but his score for one or two of the sections were autism, not autism spectrum. Our psychologist said that in her experience that is pretty typical. It's kind of like the way you can't be a little pregnant -- you either are or you aren't. Kids on the spectrum either have the typical social/communication behaviors or they don't. It's less typical for them to kind of have those core deficits. I suspect it may be the surrounding things (sensory issues, quirky special interests, etc.) that have more impact on how affected a person is by their autism.

 

Easier said than done, but I wouldn't get too hung up on which diagnostic category he is in. The interventions and the trajectory aren't necessarily going to be changed by that.

 

 

 

 

Originally Posted by baltmom View PostIn terms of interest and play, he has a very strong interest in cars, trucks, and trains. If there is one around, it’s like he HAS to play with it, almost like a compulsion. He drives them back and forth and does some imaginary stuff with them, like has them talk to each other, though that’s pretty scripted. He also looks at toys closely. It’s much more challenging to transition him from playing with vehicles than from playing with other toys. Taking turns with vehicles is also much more of a challenge. In the last couple of weeks, his fantastic daycare provider and I agreed to experiment with removing all vehicles from her house and ours. He has barely asked for them, and he seems happier and his play has expanded greatly. In particular, he has become much more interactive with his peers at her house. But, are we making it worse in the long run, creating a forbidden-fruit situation? Will he just transfer his intense interest to something else? Is it “bad” to have intense interests?

 

One of the interventions we are considering is occupational therapy, to help diversify his play. Can anyone explain how this works?

 

I am going to pursue anything and everything for him that feels right. I’m also self-employed and buy our insurance myself, and under our particular plan this probably means paying a lot of out of pocket. I don’t want this to be any kind of barrier, but at the same time it’s our reality.

 

Intense interests are part of the package in kids with ASD. I view it now as one of the positives-- these kids are passionate and knowledgeable about these particular things. The challenge is when the interest interferes with other interactions. It sounds like you are doing the right thing -- trying to expand the interests -- and I would add, trying to build social connections using the interests. He will likely change interests over time. As long as you can use them as building blocks, I think it is all good.

 

I am four years into this journey and I started at a very different place, but I now feel like my goal is -- as it is with my NT kids -- to nurture his strengths, support his deficits and love him for who he is. Your little guy sounds delightful -- and happy in his skin. I think it makes sense to support him in developing to his fullest potential, but accepting that ASD may be a piece of that -- and a piece that presents both gifts and challenges.

 

And welcome! It's a different path than the one I expected to be on, but it is lined with some pretty cool people -- both NT and ASD. :)

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#4 of 15 Old 05-03-2012, 05:46 PM - Thread Starter
 
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Thank you both, so much.

 

I would love to find a local group. The main one I have found meets in the evenings, which doesn't work since our family is just my son and myself, but I'll give a call anyway.

 

The pregnancy metaphor was really helpful in terms of not jumping to conclusions about the long term based on exactly where the test puts him on the spectrum. Can I ask, in your four-year journey, has your son been consistently subtly affected, or has it increased/decreased?

 

Thank you again.

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#5 of 15 Old 05-03-2012, 06:55 PM
 
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I think my son has improved over time. He was always more subtly affected. When we started having concerns everyone around us -- including people who are very educated about autism and about child development said, "oh, no. It's not autism." But it is. There is a big range and he is at one end of the spectrum.

 

At 4 my son had much more intense special interests. He lived as a pirate, told pirate stories, drew pirate pictures, wore pirate clothes. Now he doesn't really have an intense special interest. In his most recent evaluation (last fall, for participation in a research study), the psychologists agreed that PDD is a more appropriate diagnosis right now for him because that special interest thing is largely gone.

 

He has never had an IEP. He attends a mainstream private school and is at the top of his class academically. He has a child he calls his best friend, but his relationships lack truly developmentally normal reciprocity. But he is a bright, funny, handsome, interesting kid. The ASD label really sent me spiraling when he first got it, but at that time we lived in Silicon Valley and really, a large chunk of the very successful people there likely have ASD. They are married, have great jobs, own beautiful home, and create amazing technology. Obviously this isn't true for every person, but for my guy, that's the future I now see. Your son, if he indeed has ASD, sounds like he is similarly "high-functioning." Definitely give him all the support you can, but I suspect he will be fine.

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#6 of 15 Old 05-04-2012, 07:06 AM
 
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Quote:

Originally Posted by baltmom View Post
 

My concerns about my incredible, now 27-month-old son began on Day 1. As a newborn he had no interest in faces. There was no eye contact, and none of that hard-wired imitation that most infants do.


Also, while his eye contact with me is OK, it’s still not great with others. His joint attention/referencing is not good. He uses some gestures but not as often as most children his age typically do. He has both restricted interests and some restricted play (more on that below). He reverses pronouns (you and I) and has some echolalia, mostly delayed rather than immediate, though also plenty of spontaneous, appropriate, and very communicative speech.

 

I think this is a difficult age for parents of SN children because they're not babies anymore but there seems to be so much uncertainty as to what they're abilities will be in the future. I didn't have any concerns about eye contact and up until about 4yo he didn't shy away from affection (which, in hindsight was more of a sensory issue). Ds seemed to meet his milestones though on the latter end of the age range. The only really odd thing initially was that he didn't point. Ds always made eye contact but later on I realized that it was intermittent. Around 19mo he started to get difficult, refusing badly needed naps (and was never a good sleeper), climbing everything including the pantry shelves up to the ceiling (I had to keep the kitchen chairs locked in the garage), then eventually horrible horrible tantrums--and somewhere in there I realized his social skills were not where they should be. He also went through a period of about 6 months where he seemed scared of the vacuum and in K he actually climbed a wall to get away from the fire alarm noise. He has his interests but they are not considered "restricted" in the ASD sense of a singular interest (like knowing everything about train engines down to their serial numbers). Skipping over quite a bit, ds was diagnosed with ADHD-Combined just before first grade.

 

After ds started the ADHD medication he started allowing more touch and is actually pretty affectionate with me (and is sister when he's in a really good mood). He likes to have his three kisses (both cheeks and a peck on the lips) before leaving me and at bed time, as well as a hug. His school is a bit "huggy" so ds got in the habit of hugging his teacher in first grade and still does in second.

 

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I finally got us hooked up with a local research/clinical institution and found professionals who validated my concerns. We were placed in a research study that ended a year ago but that included regular, ongoing assessments.

 

thumbsup.gif

 

Quote:

 

Originally Posted by baltmom View Post
 

The last assessment was in December. Last week (don’t ask) I finally learned the actual results of his ADOS: he met all the cutoffs for autism.

A couple of weeks ago, we saw a developmental ped at the same institution. She said she did not want to make a formal diagnosis at this time (and I wasn’t expecting or asking for one), but we will continue to see her. She observed that he has a “mixture of concerning and reassuring behaviors.”


Also, while his eye contact with me is OK, it’s still not great with others. His joint attention/referencing is not good. He uses some gestures but not as often as most children his age typically do. He has both restricted interests and some restricted play (more on that below). He reverses pronouns (you and I) and has some echolalia, mostly delayed rather than immediate, though also plenty of spontaneous, appropriate, and very communicative speech.

 

Though a hospital evaluation last year put ds (then 6y 11mo) on the borderline for Aspergers due to his age and co-morbid issues, a more recent eval by the school determined that he qualified as Autistic under IDEA. So we are dealing with the ADHD and the social deficits and literal mindedness of ASD. His reading ability and (I'm not sure what to call it) "reasoning" ability were advanced for his age and inhibited people from seeing that there were actual issues here and he just wasn't a "behavior problem." He is receiving speech therapy at school (he has an IEP for speech as OHI under IDEA) for a couple articulation issues, and social reciprocity and pragmatics. He did see a behavior therapist for the first year after his ADHD diagnosis. This summer I want to put him in a social skills group because I think he could use some "skillfully directed" social interaction; though he has improved a lot over the past two years he still needs help in this area--working in groups this year hasn't gone well either. I'm hoping that we can get a "Circle of Friends" going at school next year for ds which I'll discuss with the school at ds' IEP meeting next week.

 

Quote:

 

Originally Posted by baltmom View Post
 

But another question that confuses me is, how much should I be trying to address the concerning areas, versus focusing on his strengths and building on those? Will it be stressful for him to try to increase his joint attention, for example? But without improving it, will that set him back in terms of being prepared to learn and grow?

 

There is a line between challenging them so they will grow/progress and stressing them into not getting any benefit at all; some therapists (suprisingly) don't get this, and some are very good at it. I think it is a combination of professional knowledge, a natural "way" with children, and a flexability to try different approaches when one isn't working that minute/day/ever. The worst ones seem to be the "I'm the professional if he doesn't respond/do it "right" then they're a lost cause", which I haven't experienced but I've heard some stories. I've had a couple lovely therapists from one company; one was an OT that did an evaluation for us, and another was an ST that also did a couple of OT things with ds like joint compressions and brushing.

 

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Originally Posted by baltmom View Post
Another question is around the accuracy or precision of the test results, and just overall what do they really mean? When he is stressed out, as he was during the assessments, his spectrumy behaviors increase significantly. But that’s probably true for anyone being assessed? So what offers the better picture or prediction of where he really is – the test, or his everyday environment?

 

Actually, reactions to assessments vary. I've seen a lot of posts where a child acted "out of character" or exhibited their most "typical" looking behavior at the assessment. My ds seems to like the one on one attention of assessments and has always cooperated with them.

 

A good evaluator takes into consideration parent reports and that a child may exhibit atypical behavior (for them) at an assessment. I was concerned that the evaluators at the hospital wouldn't see what I did in ds as he was on medication for the ADHD and he does well one on one with adults, but they did.  It can also be helpful to have surveys filled out by people that interact with your child in other environments; which you may not have at this point. When we did ds' hospital eval we had a survey filled out by ds' primary teacher, school supplied forms that all his teachers had done for his therapist earlier in the year, and a very detailed OT eval from the summer.

 

(A little tangent here: I recommend reading "Wrightslaw: From Emotions to Advocacy". They have good advice on setting up a "Master File" for your ds' evaluations, medical reports, etc. so that providers/educators, can view your ds' history, examples of things they may not see (I have a Valentine's Day letter ds wrote me in 1st grade, and a comic book he did for a language arts fair in there) and get the "big picture." You could even put in an SD card with video of his behavior in different environments that he may not exhibit in evals.)

 

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Originally Posted by baltmom View Post
 

And, while I have always been the one with the concerns and so I expected the test to put him on the spectrum, I admit I was surprised that it put him square in the autism category, as opposed to ASD. But maybe I’m misunderstanding what that means? The reason I was surprised is that his communication seems so strong that I always thought he would be considered high functioning, whatever that means. (Harper Rose recently posted a link to https://www.facebook.com/autismdiscussionpage, for which I’m very grateful, but even after reading it I’m still confused.) I’m still not clear on the relationship, if there is one, between where you are on the spectrum and where your functioning is, or really what either of those designations really mean. By the way, another test they used found his expressive and receptive language both in the very high range.

 

Well, deficts in social reciprocity with non-family and peers may not be as evident to you until he is older. My ds will talk for ages about Lego StarWars, video games, and Ben 10, but isn't really going to interract if you don't want to talk about it or want to talk about something else. He reminds me a bit of Sheldon on the Big Bang Theory who will converse with the others as long what they say is interesting to him--Sheldon normally doesn't do "small talk" or engage just to be polite. What I understand about the DSM change is that children with primarily social skills deficits, but do not meet the criteria for ASD will be diagnosed with new "Social Communication Disorder."

 

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I am going to pursue anything and everything for him that feels right. I’m also self-employed and buy our insurance myself, and under our particular plan this probably means paying a lot of out of pocket. I don’t want this to be any kind of barrier, but at the same time it’s our reality.

 

You may be able to negotiate a lower cash rate if going through insurance isn't helpful for you.  Have you contacted your school district yet? EI and the services that come after are sometimes good, sometimes not, but I'd give it a try; however, their "cutoff" for services may be higher than you would expect--meaning that they might not consider him deficient enough to qualify for services.


"It should be a rule in all prophylactic work that no harm should ever be unnecessarily inflicted on a healthy person (Sir Graham Wilson, The Hazards of Immunization, 1967)."
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#7 of 15 Old 05-04-2012, 07:37 AM
 
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I would consider EI, maybe it will help at least clarify your next steps, and it's free so there isn't really any risk or downside, just your time investment.

We started EI with DS when he was about the same age your son is now. He had many similar issues to the ones your DS seems to be dealing with. It was helpful to a degree for DS, and VERY helpful for me & DH, especially in that they confirmed that we were handling things well etc. I don't think they had a lot of experience with a kid like DS so eventually they ran out of ideas & we stopped receiving services (he was about to age out). But they did have some good techniques and DS's play improved a lot during the time he received OT & play therapy, whether that was specifically because of the therapy or simply because he was getting closer to age 3.

My DS, for the record, is now 3yo & has no diagnosis... He is definitely quirky & I suspect he may have Asperger's based on the extensive reading I've done (I started reading about ASDs when I was a teenager), but we aren't pursuing a diagnosis right now, and who knows, maybe he'll outgrow the quirks...

As far as the restricted interests... we don't actively discourage it. My DS's interest is construction work. He loves tools and nearly all of his pretend play revolves around doing construction work. The only TV shows he watches are home improvement/DIY shows. He can hammer a nail better than some adults lol, and knows the names of all sorts of obscure tools. The most frustrating part of this is the state of our house, he is constantly moving furniture and knocking things down as part of his 'work' and he's done things like pulled the door frame from the wall and tried to saw a windowsill in half while DH's back was turned. I do wish he'd explore other interests too, and occasionally I can get him involved in other kinds of play, but it takes a lot of effort on my part & his play seems very scripted. I try to introduce small variants in our play scenes each day; sometimes he is receptive, and other times he fights me on it so I just continue with the play however he wants to do it. It's hard playing with him because of the effort it requires from me but on the plus side, he likes to copycat, so when he watches me or DH or friends play, he often begins to incorporate their scenes into his own play.

I try to strike a balance between pushing DS beyond his comfort but not overwhelming him. He really struggles with social interaction, but he can handle certain things really really well -- like he'll go get the mail from the mailman, or pay for our purchase at the store, small tasks that are very predictable. So I give him lots of these little tasks (and don't force him if he doesn't want to do it), as well as try to prompt him into conversing a bit more ("Say hi," "Say thank you," etc.) but that's very hit or miss. My point is, though, that I have discovered predictable social encounters are easier for him, so those are the kind I tend to push, moreso than idle chit-chat with a friend. So you can take your broad goal ('improve social interaction,' for us) and work on it in a way that is easier or more meaningful for your DS (in our case, getting the mail from the mailman).

As far as sensory-seeking... My DS seeks out auditory input the most. I never get any silence!! lol smile.gif He also seeks oral input, spicy/flavorful foods, chews on stuff, etc. In most other areas he seems more sensory-avoidant -- doesn't like to get wet or dirty, doesn't like to run, dance, swing, etc. He avoids physical contact, except with me (with me, he wants to remain in constant contact!) I think this looks very different than a lot of kids both on the spectrum & not, and it's confusing to me.

I feel like my post is all over the place but I hope it is somehow helpful in some way!!

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#8 of 15 Old 05-04-2012, 08:01 AM
 
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Originally Posted by baltmom View Post

One area where I would love some suggestions is whether anyone has found strategies that have helped with some of the areas of concern? I want him to feel valued, not like he’s doing something “wrong.”

 

But another question that confuses me is, how much should I be trying to address the concerning areas, versus focusing on his strengths and building on those? Will it be stressful for him to try to increase his joint attention, for example? But without improving it, will that set him back in terms of being prepared to learn and grow?

 

Another question is around the accuracy or precision of the test results, and just overall what do they really mean? When he is stressed out, as he was during the assessments, his spectrumy behaviors increase significantly. But that’s probably true for anyone being assessed? So what offers the better picture or prediction of where he really is – the test, or his everyday environment?

 

....

 

I guess I’m wondering what all of this predicts for my son in the future, and maybe that’s something that can’t be known right now – I’m ok with that, but trying to sort out what is most important for us to do right now.

 

 

I think the some of the clarity that you seek is not possible. For me, part of the journey of being the parent of a child with special needs is making peace with the not knowing. It's been huge for me. My DD is 15 is there is a still a great deal we do not know.

 

An assessment is a lot like a photo -- just a snap shot in time. Some of them are better than others, more accurate.  But that the fact that you child found the assessment extremely stressful says something about him. Exactly what is difficult to say. My DD's primary dx is Asperger's, but she also has a dx of "social anxiety disorder."  Now that she is a teen, in some ways the social anxiety disorder is the bigger challenge. For her right now, it will have the bigger impact on how her future plays out.

 

When my DD was a child rather than a teen, I sought out activities that had therapeutic value for her, but were also fun. Swimming, for example, fit that in spades. My DD is a competitive swimmer and has a heck of a 200 IM. She never thought of swim team as a time to work on her sensory issues or social skills or anything else. She just loved being in the water. love.gif

 

All parents work with their kids and teach them things -- if it's by cooking with them or playing a board game or whatever. Although with a child with even mild special needs, those moments can become more deliberate and consistent, at it's heart, it's still just parenting. I think a little challenging, but a challenge that can be meet, is the ideal.

 

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Originally Posted by Emmeline II View Post

Actually, reactions to assessments vary. I've seen a lot of posts where a child acted "out of character" or their most "typical" at the assessment. My ds seems to like the one on one attention of assessments and has always cooperated with them. A good evaluator takes into consideration parent reports and that a child may exhibit atypical behavior (for them) at an assessment. I was concerned that the evaluators at the hospital wouldn't see what I did in ds as he was on medication for the ADHD and he does well one on one with adults, but they did.

 

 

Well, deficts in social reciprocity with non-family and peers may not be as evident to you until he is older. My ds will talk for ages about Lego StarWars, video games, and Ben 10, but isn't really going to interract if you don't want to talk about it or want to talk about something else.

 

agreed. A good evaluation takes in as much information as possible. My DD's last eval (she was 13) included input from her school teachers and her counselor (she was in cognitive behavioral therapy at the time).

 

Part of how profoundly a child appears to be effected depends on how they measure up against our societies norms for a child their age. My DD has been on her own little trajectory for development, and sometimes appeared more in line with what is considered typical for her age and sometimes appeared less so. Sometimes the exact sitaution she is in has a massive impact on how she seems. For example, she attends an alternative school now and functions wonderfully there, but she was a complete mess at a traditional school. She's still the amount of the spectrum, but changing the environment caused it to be less obvious. But the reason it's the right school for her isn't because she appears more NT there, but because the school does a better job of helping her develop as a person.

 

There are a lot of things that can be done to help children develop social skills as they grow up. Social skills classes, for example, were very helpful for my DD. But she has less of a need for interaction with other people than is typical. She's just wired differently. I think there is a balance between accepting that a child is wired differently and that what a happy/successful life looks like for them can be different than for ME, while helping them develop the skills they need so that they can create the kind of life they want for themselves. This is one thing I do find easier the older my DD gets -- being able to tell what is truly helpful for HER from what is a push to make her act more NT.


but everything has pros and cons  shrug.gif

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#9 of 15 Old 05-04-2012, 07:25 PM
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Have you considered doing play therapy at home for free?  "Engaging Autism" by Greenspan explains how you can use play therapy to target your child's unique needs.  There are also books that describe home activities to work on OT goals, such as "The Out of Sync Child Has Fun" by Carol Kranowitz.  I've had my DS1 in private gymnastics lessons for 5 years, because it's one-third the cost of OT, but it incorporates all of his OT & PT goals.  There are plenty of ways to reach your goals on a tight budget.

 

Linda is correct - having a child like this means that you'll never have all the answers.  You'll have to make peace with it somehow.

 

My DS1 is 11 now.  No one ever used the term "high-functioning" to describe him when he was younger, and he is still noticeably impaired.  But he's in a regular 5th grade class, he's on the school safety patrol, he invited a group of dear friends to his birthday party, he's the Catholic Church's most enthusiastic altar boy, he plays basketball in an adapted sports league and he wrote a cookbook.  He never stops working, he never stops trying.  So I don't stop, either!


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#10 of 15 Old 05-04-2012, 07:53 PM
 
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I second Crunchy_momma - have you looked into EI?  That would be the first thing I did.  I know it varies from state to state, but they should be able to help with resources at the very least. 

 

We started the eval process as 22 mos, and I wasn't nearly as detailed in my concerns as you are.  He had a ton of receptive language, but expressive was mostly echolallic, he didn't make eye contact, point, play with other kids, he's obsessive over sticks and things that spin, and at the time he was self-harming.  Yet at the same time, he knew his ABCs, could count to 10 and could read sight words at 22 mos.  We got a dx at 26 mos (HFA), and started therapy at 28 (that was in January).  So we're only a little over 3 mos into therapy, and I already see huge differences in his communication and interactions.  However, now that I've seen ABA therapy at work, I know that it's not anything I couldn't have done myself with a little reading and a lot of perseverance. 

 

We recently started the transition work to get him into the school district at 3, and I have to say that this is where EI is really coming in handy - because I wouldn't have any idea how to go about it if they weren't holding my hand. 


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#11 of 15 Old 05-05-2012, 06:48 AM - Thread Starter
 
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Wow, thank you SO, SO much to everyone for all of your very kind, thoughtful, and wise comments. I'm already feeling so much more empowered by your insights, and definitely well supported. It means the world to me.

 

I neglected to mention our EI experience (must have blocked it outdizzy.gif). I first approached them at around 4-5 months and they laughed me off. Literally said to me that older moms these days read too much and see things that aren't there. Told me that autism is only about not pointing by 12 months and that his lack of eye contact/face-gazing meant nothing. A few months later, armed with concerns validated by the research institute, I went back to them. They finally agreed to qualify him but only because I knew someone who knew someone. He had his eight sessions which were completely useless, the therapist never really connected with him and didn't really seem to know how to try. I had her supervisor come to one of the sessions but nothing improved. They disqualified him after that and I certainly was not motivated to pursue more. Unfortunately, from what I've heard, this is pretty typical for EI in our jurisdiction.

 

I will definitely be looking into all of the other resources mentioned, as well as trusting my own instincts more.

 

Thank you!!!

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#12 of 15 Old 05-08-2012, 07:02 PM
 
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Don't have time for a well thought out reply, but I just wanted to let you know that your DS sounds very much like mine. My DS (now 10.5) was diagnosed with mild Aspergers and ADD at the age of 3.5, by a dev. ped. We first took him in at 3, but the dev. ped. would not give him a diagnosis. We did EI, and then he has been receiving services though the school district since K'garten.

 

He is still not very social with peers, but he is doing GREAT in every other category. He is in a mainstream class, has very few quirks, behaves very well. He does have a hard time paying attention, but he is aware of this and tries hard to overcome it.

 

We do wish he had a few close friends at this age, but he is not very interested in having friends. And since he doesn't seek friendship, he does not get rejected (which I guess could be considered a good thing). 

 

He has two younger brothers who he is very close to. He interacts with them very well. Nobody watching them together would ever guess he has Aspergers. Having the other boys has also taught us not to dwell on every quirk or behavior. All of our boys have quirks and do strange things, but the younger two would never be placed on the spectrum. 

 

There are also four other boys in DS's grade with Aspergers. They do a lot of social resource room stuff together, and are a close-knit group. We have also grown close to their parents, so having that support really helps. 

 

Best of luck with your DS! Anything you do for him will be helpful in some way.

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#13 of 15 Old 05-15-2012, 12:49 PM - Thread Starter
 
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I just wanted to return and once again thank everyone from the bottom of my heart for all of the time you took to be so thoughtful and supportive as well as incredibly helpful in a practical way. Every single response has made a major difference for me. It is so grounding to hear about everyone else’s journey – I know that every journey is different, but just hearing how everyone made the decisions they made as well as stories of thriving kids makes me feel part of a powerful community.

 

We are on lists for a number of interventions at the research institute and will decide as the time comes which will be most relevant and effective. My little boy continues to amaze me with his spirit as well as his development. There are times those ADOS results really feel like a non sequitur. However I’m viewing this time as a gift to address early on some things that could have been overlooked, but might become bigger issues later. This is a step forward for me past the panic and immobilization I usually feel when it seems the message is “the earlier the intervention the better” and “it’s too soon to know what’s really going on” at the same time.

 

Taubel, thank you for your encouragement. It is encouraging to hear how similar our boys seem, even though my son’s ADOS seems to put him deeper in the spectrum. And I am trying to remember that, as you say, anything I do for him will be helpful. I’m getting there smile.gif

 

Christinelin, the stories of children with characteristics so similar to my son and who are thriving are, as I’m sure you can imagine, so heartening and have helped immensely in relaxing some of my fears and just being present with him now. I know much of my anxiety has to do with worry that I am not equipped to give him everything he will need down the road, and just seeing how everyone here rises to every challenge has given me some needed confidence.

 

Emmeline II, I really appreciate your sharing your journey. It sounds as though you have a great deal of experience with a very wide range of therapists. Your advice will help me to trust my instincts as we start our own journey. Just in our short time so far, I already know I’m leery of assessment that isn’t directly linked to suggested action. I occasionally wonder if there is some ADHD going on here as well – but then again he’s a toddler – how to tell the difference? smile.gif My son’s daycare provider has offered to complete a survey or any other documents that would be helpful, so I will bring that up at our next visit with the dev ped. The Wrightslaw book looks incredibly helpful, as is the whole website. Thank you! And I definitely see the social skills challenges even now. I’m hoping that as I get more connected to local resources, I will locate some social skills classes (maybe those are more for kids older than 2?).

 

Crunchy Mommy, yes, it was very helpful! smile.gif While EI was not constructive for us as I mentioned in my last post, the research study we were in very early on was designed to give parents strategies to work with our kids. Many of them were very language-based which happens to be one of my son’s strengths, at least on the surface (and the strategies did not really get into the subtleties of pragmatic language). But I’ve realized that the overall concept of incorporating into our play some practice with areas of challenge comes pretty naturally by now, so maybe I’m doing more for him than I’ve realized J And my son has a combination of sensory seeking and avoidance too! Both are pretty mild at this point but I realize that can change. You have introduced to me the idea of setting “broad goals” for him myself even while we’re in this limbo of professional intervention, and finding that balance of security and challenge for him.

 

Linda on the move, it was HUGE for me when you said that what will help my son to be his best self is not necessarily the same as what will make him “act” more NT. Such an aha moment that has helped me relax about his more quirky behaviors and just focus on him. And guess what? Just in this short time, I’m seeing a small explosion of development in motor, social, and play skills. And as a side note, fewer quirks at the moment. Wow. Could be a coincidence, but wow.

 

Fay, all of your resources look extremely helpful. Including the idea of using private gymnastics to address OT goals. My son recently entered a throwing phase, and I would love to find a way to channel that impulse constructively smile.gif

 

Cristeen, you made me realize that 3 will be here before I know it, and I do need to know how to navigate the next part of the journey, especially without EI. You have also helped me to realize many of the things I do with him are probably already helping, eg talking explicitly about things like emotions and social interactions.

 

Once again, thank you everyone for the warm welcome into your lives and insights.

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#14 of 15 Old 05-15-2012, 04:44 PM
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Regarding the throwing phase, we are starting private tennis lessons for our 5 year old this summer through the local parks & rec dept.  It's a lot cheaper than OT.  He has always had a strong throwing urge, but does poorly with team sports.  He loves tennis because he actually gets praised for hitting and throwing the ball.  We also have a variety of frisbees, discs and textured balls and we encourage him to play catch with us as often as possible.  Of course, he aims at our heads or tries to throw things into the trees, but we just keep encouraging him to throw things constructively as part of a game.  On rainy days, we play catch indoors with a teddy bear instead of a ball.  Also, a neighbor was just telling me today that she cleared out her basement so that the kids can play floor hockey down there.  It's great for visual tracking and hand-eye coordination.  If your child has a strong hitting or kicking urge, sign him up for martial arts - many martial arts places now advertise classes for kids with ADHD or autism.  Hang in there - and keep asking questions.  The parents on this forum have a wealth of experience to share!


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#15 of 15 Old 05-16-2012, 05:44 PM - Thread Starter
 
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Great ideas Fay - thank you!

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