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point me in a direction, please!


mamashark
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Ok, I know I've had pieced-together discussions about my son here at various points in time, but I need to lay out some things and get some advice. I am to a point where I KNOW this isn't normal and I want help. I need help. BUT. No one around me is willing to accept that the behavior is outside "normal". Our pediatrician thinks he's "intense" and will be the most loyal adult because of it. My mother thinks it's just him trying to get his way, my dad thinks he's "tired" my inlaws just laughed at me. My husband refuses to have him evaluated, but said I'm more than welcome to buy any book I want and try a "new direction". 

 

He is 3, turns 4 in 1 month. 

 

The main behavior I need help with: he has daily, frequent (multiple times a day, often) fits. These fits can be as simple and blessedly peaceful as him shutting down (he'll pretend to be asleep and refuse to get out of the car, then when lifted down he'll walk with his eyes closed until he's good and ready to be "awake", or he'll refuse to make eye contact and not respond, if you try to force it, he'll make a screamy-whiney sound and hide his head). Snapping him out of this type of "fit" is inconsistent and like flipping a light switch. If I can get him to respond with words, he'll suddenly be normal again. It makes me feel like I have whip lash sometimes. 

 

Other times, (especially when tired or hungry) he'll throw major meltdown/screaming fits. This is getting progressively worse and he will fight you if you try to do anything. He has to be left alone to calm down.

 

I am afraid of disciplining him or telling him no in public because I'm afraid of what the consequences will be in behavior. 

 

I never know when he'll scream in complete rage at a sibling over a messed up toy or game, but thankfully he never hits or lashes out. I'm just afraid that he'll get to that point one day. He's already almost too strong for me to fight.

 

Some of his history:

He has experimented with different types of "fit throwing" since babyhood. (breathholding was my favorite period because I could change his diaper quick while he held his breath!)

 

He's never been violent, never hit, bit, anything. He's terribly sensitive to tv shows/movies and will be literally shaking in fright at Veggie tales. When he gets hurt, he avoids comfort. He'll hug you, but on his terms only.

 

He had an atypical speech delay (he'd talk in the back of his throat with inflection - people could understand him even without words!) We had a PROMPT speech therapist work with him (magic! and he is talking normally now - although the phrases and things he says surprise me for his age). He's incredibly polite and charms people with his words all the time.

 

He's still in diapers. He knows how to use the potty and keep his underwear dry, he just refuses, or can't? He'll often tell me "I don't know if I'm poopy", and yet only about half the time is actually poopy. I find it odd that it seems that he cannot tell.

 

He's particular about his clothes - doesn't like certain pants and I have cut the tags out of every shirt he owns. He's still not consistent in sleep - in fact I will sometimes give him a low dose of melatonin because otherwise he'll be up so late and is always up early and the more tired he is the worse the fits are.

 

He loves trains and will create in depth imaginative play with his trains. He plays well with his siblings and his sunday school teachers tell me that he acts totally "normal" in class. I've sat in and observed and he does not seem any different from the other kids.

 

He is our thinker, asks really great questions, really good with his hands (amazing fine motor skills for his age) and is ahead of the curve with gross motor skills as well (can ride a two-wheel bike without training wheels and is better than I am on a regular scooter with 2 wheels). 

 

We've tried an elimination diet and noticed no sensitivities. Some of it seems to fit ASD but other pieces don't seem to fit - could it be gifted? High functioning autism? something completely different? (Or am I nuts and it's just a "normal" intense kid?)

 

So if evaluation is simply off the table right now, but you could pick any book you wanted to "change directions" in how you handle a kid like this, what would you choose? 

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You've definitely got some flags for high functioning autism. You need evaluations--why are they off the table? If you have health insurance you can start with your pediatrician. Also, contact your local school district; he's too old for early intervention but the early intervention folks could tell you who does handle evaluations for preschool age. They are required to evaluate and it is free. They won't diagnose autism (you need a medical practitioner for that) but they can provide good information and are a source for further resources.

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You've definitely got some flags for high functioning autism. You need evaluations--why are they off the table? If you have health insurance you can start with your pediatrician. 

 

My husband won't agree to evaluations right now. And we'd have to pay for them - we can't afford the affordable health care plans and are members of a health sharing plan that is great for sickness/injury but doesn't cover evals. Oh, and the pediatrician doesn't think there's anything wrong. She even told me that she had another mom push for evaluations and in the end was told her kid was normal. This of course doesn't help my husband's argument against evals either. I'm basically the only one saying something is wrong.

Edited by mamashark
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I'd divorce before I'd let the husband decide not to eval in a situation like that.

 

Just your blunt advice of the day. And I don't joke.

 

You have so many red flags, it's glaringly obvious. Your dh's head in the sand is delaying you getting proper help, and it will stress your family and cause needless pain.  So don't get an eval. Get something else.  Bring in a behaviorist (a BCBA) and pay for it yourself if your insurance won't cover it. But get a BCBA who works under a psych so they can diagnose.   ;)  Wasn't a psych eval. It was just an, um, intake so she can help you with his behaviors. ;)

 

Adding, since I'm in such a frank mood, that what you're seeing is that ASD1/2 kind of thing. Like if you're thinking oh it should look like such and such, well that such and such is ASD3. There are some charts you can google to see the comparisons. ASD3 is where it's glaringly obvious to a total stranger. A person sees that dc on the street and they go yes, it's ASD. ASD2 is in the middle, where a random person will figure it out with some time. By the time you get down to ASD1, it's in that realm where it's not immediately obvious, where people give you a hard time and say are you sure, they say oh my kid was like that, but experts and people who know autism see it. 

 

You're also seeing, I think, some of those splinter skills where brain energy diverts from something that *should* be developing that isn't and diverts into another path making these phenomenal strengths. It's really easy to go see, therefore there's no problem! Well what the unusual strengths tell you is that brain energy is still getting diverted, that he's not developing evenly. When you identify those areas that *aren't* getting used right now, they'll suck up the brain energy and even him out.

 

In other words, if you don't make some effort to get those areas identified and get intervention, it's going to become MORE extreme, not less. He's not going to even out on his own. He's going to have some marvelous strengths (he's probably gifted!), but he's going to have increasing weaknesses.  Social skills are THE number one determiner of employability, not IQ. We do our kids no favors when we wait on interventions. Well at least that's my opinion and my take. 

 

But really, even the IQ isn't that important right now. What's important is finding a back door way to get that proper eval and intervention while handling your dh. And if you can back door it with a BCBA working under a psych or through the county health department or something, that's what I would do. Call it behavioral intervention, because that's what it is.

Edited by OhElizabeth
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My husband won't agree to evaluations right now. And we'd have to pay for them - we can't afford the affordable health care plans and are members of a health sharing plan that is great for sickness/injury but doesn't cover evals. Oh, and the pediatrician doesn't think there's anything wrong. She even told me that she had another mom push for evaluations and in the end was told her kid was normal. This of course doesn't help my husband's argument against evals either. I'm basically the only one saying something is wrong.

 

Sigh. This process isn't fun. It's not fun because it's such an emotional thing to deal with.  You're likely to hit this wall and get through it or over it before your dh, WAY before him.  Just saying. You're home all day and you're seeing him compared to his peers. 

 

The other problem is that homeschoolers don't have their kids with adults enough for those adults to fill out behavioral forms. It's terrible, and I hated it when I was told this, but I will tell you the number 1 instant thing you could do right now to get this identified is put him in preschool. He needs to be in a non-preferred situation where adults make demands and require him to do things, and he needs to be in there enough hours a day, enough days a week that the honeymoon is over (it's no longer novel and enchanting) and his real behavior comes out. And that means he's gonna be under tables and screaming and non-compliant and everything else he is with you, but he'll finally be doing it WITH SOMEBODY ELSE.

 

In our case, I had to pay someone to come in and work with my ds so we could get enough hours with other people working with him that it was FINALLY obvious. These freaks were saying it was me! I'll bet your dh does it to you. They'll say oh it's your fault, he's angelic with others. But others aren't making demands and they aren't making demands day in, day out. So until you get that happening, you don't have any data, any feedback where other people are seeing it.

 

Another way is to bring in a BCBA. It's the proper intervention for autism (don't tell him that), but it's less expensive (around here $60-100 for a small town, not the big city, not phd), and it can get you someone with enough time with your dc that they can fill out the forms.

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Interesting! Can you sort of summarize Dialectical Behavior Therapy? I don't know anything about it, or if I did I've forgotten. 

 

My ds is very intense. I meet kids with autism who aren't. Like they'll react and have meltdowns, but they're just a little more easy on the wiring. So, as you say, sometimes you just meet them where they are. When I read Greene's book (The Explosive Child), it was like wow finally gets it but STILL not enough. That's when we went to the BCBA. For us, the BCBA was a really good move and started getting us improvement and peace within a month or two. Our BCBA says the husbands are the last ones to get on board. They need to see some progress to go ok, maybe this is a good way to go...

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And I agree with you it's very challenging to make requirements and have consequences with a dc whose sensory is that off.  No, he's probably not feeling his bathrooming. One OT gave us some listening therapy cds that helped with that a bit. He went from wet 3-5 times a day (at age 6/7) to wet once a week. He also had some retained reflexes causing part of it, so that's something you can have checked. And when he's emotionally whacked, his pottying regresses. We really have to watch it, because he might have been dry for weeks and then have something happen that causes regression.

 

Professionals are (sometimes) idiots, just so you know. No respect for your ped. She doesn't have any consequences when her advice is wrong. The ps sat there telling me, when my ds was 7 and wetting so many times a day, that "lots" of kids what like that. During the day. At school. Like it just wouldn't matter and shouldn't factor into anything.

 

Get really cynical and don't trust anybody. You see your kid and you're looking at his peers and you're noticing things that aren't typical. It's not your imagination. And he probably is gifted, and that *can* make him more intense. But really, you're waiting for the professionals to finally see what you're seeing or for someone to LISTEN. Look for someone who will finally listen.  The BCBA might be that person.

Edited by OhElizabeth
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Yeah, what you describe is something. My son showed many of the symptoms you listed and got an initial diagnosis of SPD. Not saying that's what your son has, but half the things in your list were enough to get my kid that label.

 

The Sunday School class might just not be doing the things that make him "freak out." My kid is perfectly happy and quiet in a classroom, until it comes time for a "class party" and the music cranks up and the kids are dancing and being loud and silly - and there's my kid under the table in the corner with his hands over his ears and a look of pain and fear on his face. And yet so many teachers would tell me when he did this that he was being disobedient, or wondered if we were running a super-rotten home life (we're very boring and normal, seriously, but thanks).

 

Did the speech therapist say anything to you about his behavior? Is there any way you can get back in contact with her and ask her if she has any ideas?

 

Do you know a SpEd teacher or Ed psych or anything like that through church or somewhere? Maybe your DH and you could take him or her out to dinner and share your concerns under the guise of "seeking a new direction." If the "professional" responds with "you really need to get that evaluated" then maybe your DH will listen (men are like that sometimes, kwim?).

 

As for finding cheap backdoor solutions - you could also walk into your local YMCA and ask at the desk if they know of anything for preschoolers needing help with social skills or developmental issues. I've found the Y very useful for knowing about free community services and special programs that were otherwise completely invisible. 

 

And yes, see if you can put him in preschool. Preferably one that has SpEd teachers on staff. But, if the teachers are negative about his behavior, then pull him immediately. 

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My husband won't agree to evaluations right now. And we'd have to pay for them - we can't afford the affordable health care plans and are members of a health sharing plan that is great for sickness/injury but doesn't cover evals. Oh, and the pediatrician doesn't think there's anything wrong. She even told me that she had another mom push for evaluations and in the end was told her kid was normal. This of course doesn't help my husband's argument against evals either. I'm basically the only one saying something is wrong.

 

That's what our (former) ped said.  She totally missed red flags in two of my kids.

 

Edited by TrixieB
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My ASD son wasn't diagnosed until age 16. In our case the diagnosis was just something we needed for accommodations in college. At home I worked with him and accommodated him in our homeschool.

 

My suggestion is to make regular food and sleep a priority. When those things are off my son has a harder time.

 

I had to describe potty training sensations to my son. For some reason having it put into words made a huge difference. I would talk about "feeling a tickle " when he needed to pee or "feeling pushing " for when he had to poop. I think that he was so overwhelmed with all the stimuli that would bombard him (that most of us just block out) that he needed help isolating those specific stimuli.

 

I understand the extreme sensitivity. I remember singing a subtraction song about ducklings leaving the mother duck and my son sobbing uncontrollably. It didn't matter that I assured him that the ducklings came back! I can assure you that my son did outgrow it. But kids with ASD are late bloomers. It doesn't help to push them.

 

I would maximize the strengths that he has. My 19 year old ASD kid will tell you that he thinks differently than most people but that can give him some good things to contribute to the world.

 

 

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If he has ASD, kids like him (and he is similar to my kiddo with ASD) tend to get diagnosed later. Mine was almost 9. If you find a 2e ASD literate psychologist, that could help with the diagnosis part. 

 

I also think it's reasonable to get a BCBA person in to see if some behavioral help would be good, and then ask them for referrals to people that can spot 2e ASD.

 

If it's not ASD, the same people who are 2e ASD literate will probably know what it is instead. 

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Sigh. This process isn't fun. It's not fun because it's such an emotional thing to deal with.  You're likely to hit this wall and get through it or over it before your dh, WAY before him.  Just saying. You're home all day and you're seeing him compared to his peers. 

 

The other problem is that homeschoolers don't have their kids with adults enough for those adults to fill out behavioral forms. It's terrible, and I hated it when I was told this, but I will tell you the number 1 instant thing you could do right now to get this identified is put him in preschool. He needs to be in a non-preferred situation where adults make demands and require him to do things, and he needs to be in there enough hours a day, enough days a week that the honeymoon is over (it's no longer novel and enchanting) and his real behavior comes out. And that means he's gonna be under tables and screaming and non-compliant and everything else he is with you, but he'll finally be doing it WITH SOMEBODY ELSE.

 

In our case, I had to pay someone to come in and work with my ds so we could get enough hours with other people working with him that it was FINALLY obvious. These freaks were saying it was me! I'll bet your dh does it to you. They'll say oh it's your fault, he's angelic with others. But others aren't making demands and they aren't making demands day in, day out. So until you get that happening, you don't have any data, any feedback where other people are seeing it.

 

Another way is to bring in a BCBA. It's the proper intervention for autism (don't tell him that), but it's less expensive (around here $60-100 for a small town, not the big city, not phd), and it can get you someone with enough time with your dc that they can fill out the forms.

 

DH didn't believe me when I told him that if we put him in a preschool every day he would begin displaying the same behaviors as I see, but when I challenged him and asked if he thought I was causing the behavior, he backed off and said that no, it's not my fault. He even said he may be willing to consider evals, if I was that convinced. Almost like by allowing an eval, it might prove me wrong. I'm ok with that. Part of the issue is that we had a really bad experience with a psych eval for our eldest daughter and we paid a pretty penny for it. The guy was an idiot and he was quick to jump to conclusions, but didn't give us accurate answers or helpful behavior advice.

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As for finding cheap backdoor solutions - you could also walk into your local YMCA and ask at the desk if they know of anything for preschoolers needing help with social skills or developmental issues. I've found the Y very useful for knowing about free community services and special programs that were otherwise completely invisible. 

 

 

The YMCA is a good idea, I'll have to ask there and see what suggestions they have! 

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DH didn't believe me when I told him that if we put him in a preschool every day he would begin displaying the same behaviors as I see, but when I challenged him and asked if he thought I was causing the behavior, he backed off and said that no, it's not my fault. He even said he may be willing to consider evals, if I was that convinced. Almost like by allowing an eval, it might prove me wrong. I'm ok with that. Part of the issue is that we had a really bad experience with a psych eval for our eldest daughter and we paid a pretty penny for it. The guy was an idiot and he was quick to jump to conclusions, but didn't give us accurate answers or helpful behavior advice.

 

Another good reason to bring in the BCBA. You need someone else seeing the behaviors so they can fill out those forms too.  Otherwise it won't get diagnosed and your dh will be very frustrated. That can happen. These psychs do not have a magic ball to rub. Unless you have people to fill out those forms that you KNOW have seen the same challenging behaviors you have, I would be cautious. It can be preschool or an ABA worker or anyone who makes demands in a non-preferred setting. If he wants to be there, loves it, and the person goes along with everything he wants (Grandma), that won't do. 

 

I'm sorry your first eval cost you so much. I would definitely do some calling around. Good psychs have a long wait. Take your time with this step, put your ear to the ground, see what you can find. You're going to want a BCBA anyway, so your work now isn't wasted. This is not something that is just going to "fix" or disappear because you brought in some help. The first few weeks are spent getting to know each other anyway. Our behaviorist talked with me and just watched ds for a few weeks before she ever tried to do much with him. Once she tried, he was pretty non-compliant, so that's when the hairness started. So then they have that mixture of knowing what you're saying you're seeing plus what they're seeing plus the behaviors they get when they slowly begin to make demands.  

 

A behaviorist essentially is going to find out what motivates them, pair with them (get them wanting to interact, become high value) and then slowly make demands to keep the fun going. And as they do that, behaviors will come out. Then they'll be able to put it on the forms. 

 

If it's just Grandma doing everything he wants (no demands), there will be less behaviors. That's why it's easy for the man to quietly think it's your fault, because in reality you (Mom) are making demands all day and he comes in with high value fun and no demands, meaning he gets easier compliance.

 

Definitely wouldn't rush into a bad eval situation. You really need someone, or two people but at least one, seeing the behaviors as well so they can mark the forms. 

 

Do you have autism clinics where you are that can do full day or multi-day evals? That's another good check, because then you have a long day and more room for behaviors to come out. Usually they'll use a team approach, so you'll get OT, SLP, psych, play, etc., all under one roof.

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Another good reason to bring in the BCBA. You need someone else seeing the behaviors so they can fill out those forms too.  Otherwise it won't get diagnosed and your dh will be very frustrated. That can happen. These psychs do not have a magic ball to rub. Unless you have people to fill out those forms that you KNOW have seen the same challenging behaviors you have, I would be cautious. It can be preschool or an ABA worker or anyone who makes demands in a non-preferred setting. If he wants to be there, loves it, and the person goes along with everything he wants (Grandma), that won't do. 

 

Agreeing, though the child can have odd behaviors in places they like to be if you have an astute person to pick up on that, and that person is making demands that might not be liked. You should also be telling the person that you won't feel bad if they are candid about your child's odd or difficult behaviors--tell them that being candid is what will help your child in the long run.

 

I can't tell you how many times I've had people fill out forms and get all apologetic--those forms are generally the most informative!

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I will add that it may NOT be ASD, but WILL require in depth evals to sort it out, because it IS SOMETHING. Ask me how I know. . . we just got through an EPIC fall of intense evals. . . dev ped, psych, and school district for IEP. It was intense and painful, but we got answers, formulated a plan, and ds, who turned 4 in Aug, is THRIVING now that we know what we are dealing with and have the appropriate interventions. He is a different kid. He presented VERY MUCH like your ds, and he does not have ASD.

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I will add that it may NOT be ASD, but WILL require in depth evals to sort it out, because it IS SOMETHING. Ask me how I know. . . we just got through an EPIC fall of intense evals. . . dev ped, psych, and school district for IEP. It was intense and painful, but we got answers, formulated a plan, and ds, who turned 4 in Aug, is THRIVING now that we know what we are dealing with and have the appropriate interventions. He is a different kid. He presented VERY MUCH like your ds, and he does not have ASD.

What did they diagnose, if you don't mind me asking?

 

 

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