Annoying things people say about your ASD/ADHD dc's behavior...

[Crimson Wife]

Oh my, that hurts!  I'm starting to realize how fringe my child can be too, even among kids with similar labels, and that's sort of isolating, like you thought you were on an island WITH someone and now you're not. 

 

Yeah, I feel like I'm not fully able to relate to either the autism community or the deaf/hard-of-hearing community because my little one is such a complex case. I've never met another family whose child has both autism and a hearing impairment, much less one whose child is 2E on top of that. I'm sure that my DD can't be the only one out there. However, if 1% of kids are d/hoh and only 1.7% of those have autism and then you layer the bell curve for IQ over that population, you're talking a very small number.

[FairProspects]

Yeah, I feel like I'm not fully able to relate to either the autism community or the deaf/hard-of-hearing community because my little one is such a complex case. I've never met another family whose child has both autism and a hearing impairment, much less one whose child is 2E on top of that. I'm sure that my DD can't be the only one out there. However, if 1% of kids are d/hoh and only 1.7% of those have autism and then you layer the bell curve for IQ over that population, you're talking a very small number.

 

Yup. Ds 1's cocktail of dx is so rare that according to the neuropsych, teachers only see 1 kid with his profile over the course of a *career* and that in our whole major metro area (which is NOT small) we should not expect to meet anyone else with his complete profile. Those were the exact words. I remember them because they stunned me. I think many (if not all) of us are dealing with far more exceptional situations, in every which way, than we often acknowledge or realize. But at least we can share our experiences of having complex kids on the fringes. :D

[kbutton]

So, I apologize if I came across as insensitve.  I have a fairly thick skin and am not easily offended.  I thought my meaning would translate.  It did not.  I am feeling especially frustrated right now.  A new special needs coop is starting within our normal coop.  I thought it would be a perfect fit for my ds.  He was turned away because he has too many SNs.  Ouch. 

 

I really didn't want OhE's op to become all about me.  I rarely vent and rarely visit the board anymore and I chose an inappropriate time to do both.  Sorry.

 

We've all diverted a thread or had our exposed nerve became evident to all unintentionally.

 

I am glad you commented as well. I think it's important to not get too comfortable with our own perspectives--we need to keep the special needs boat afloat, supportive, and open to all that need it.

 

I am really sorry about the co-op. That is very frustrating. 

[kbutton]

As far as when I am modeling how to treat my son ----- this is really just when he is looking disengaged.  When he looks disengaged ,it can be off-putting, and people may not know whether to try to engage him, or if they should leave him alone.  I think I can give a lot of clues that say "engage him" or "he is not as disengaged as he might look," and I think it is helpful, and I like to do it anyway.  

 

I think this is useful in myriad ways. I work with kids at church sometimes, and I am a SN parent. I was a SN parent before I knew that I was, and I worked really hard to use the tough times I had with my son as a lens when looking at other kids. But I am not an expert on every kind of SN. And we SN parents can be a touchy bunch. There is nothing worse than knowing a kid has a SN, but not knowing what it is, if it's diagnosed, what the child is capable of vs. what is a stretch, what the parents expect, etc. and then seeing that parent frustrated, angry, or defensive when their child didn't have a good experience because you didn't know how to guide their child in the activity. I know someone who left a church partly (and largely) because she didn't feel her son with ADHD was accepted. Well, the flip side is that they spent a lot of time thinking he'd outgrow the trickier behaviors because an older sibling had really calmed down a great deal as she aged. Well, that wasn't happening with him, and he was extraordinarily difficult to handle when he was pleasant, much less when he was having a bad day--even teachers who were experience with challenging children were getting fried and sometimes hurt (minor stuff, like being scratched or bruised). This family never gave tips for how to handle things. They would say that they could come get him if needed, but when that happened, they acted kind of put out and upset that they were being singled out. It was a very tense and difficult situation.

 

There are some other kids I've worked with where I had limited information as well, but at least I'd seen the parents talk to them and work with them, and that's gone tremendously better.

[PeterPan]

Yeah, I feel like I'm not fully able to relate to either the autism community or the deaf/hard-of-hearing community because my little one is such a complex case. I've never met another family whose child has both autism and a hearing impairment, much less one whose child is 2E on top of that. I'm sure that my DD can't be the only one out there. However, if 1% of kids are d/hoh and only 1.7% of those have autism and then you layer the bell curve for IQ over that population, you're talking a very small number.

Can the autism.org place or a FB group or something help you get connected?  I mean, that's like on TLC where they help people with only 3 people like them in the country find each other...

[Lecka]

I think this "could have been or should have been" idea is destructive.

 

You don't get to pick out the parts you like and say "these are the good parts," and then pick out the parts you don't like and say "these are the bad parts" and then act like "we should only have good parts and no bad parts."  

 

It has always been what it has been.  Maybe you knew one part first, and then you found out about the other part.  

 

But it has always been there -- your child.

 

You don't get to say "I like his smart side but I don't like his difficult side."  

 

You don't get to re-make him as a different person.

 

I think you need to work on accepting the child that you have.

 

Yes, balanced with wanting to do interventions and address things.  

 

But that is part of raising/guiding/teaching every child.  It is slightly different in degree.

 

But you don't get to say "if he was smart but this and that was different, then I would accept him, and I wouldn't want to pick out these certain parts."  

 

No one gets to do that.  That is not our task as parents who are entrusted with our children by God.  

 

If you think God wants you to think your son can never be good enough b/c you are not going to be able to erase his deficits, I think you are wrong.

 

God wants you to embrace your child as he is, the whole child.

 

Maybe you get improvement, maybe you don't, in various areas.  But I think God promises that he will be with us, not that we get the outcome we want.  

 

Really -- maybe you are not that far down this path. 

 

But with some things you say, you come across like you view your son primarily as a really smart kid, and then oh, he has these challenges tacked on, and it is your job to overcome and minimize these challenges, and to succeed you must minimize them until they are nothing.  

 

But no, your job is to love, accept, protect, guide your child.  

 

Your job is not to say "he is supposed to be this unblemished brilliant child, and I must realize this potential or I am a failure."  

 

I really have a low tolerance for this kind of mindset, b/c I think it is harmful to children, and I think it is harmful to adults.

 

I also do not believe that this is God's plan for us.  

 

I think also -- concentrate on knowing your child as he is.  I did an entire Bible study on this a few years ago (Charles something, I am blanking right now, but he is associated with Dallas Theological Seminary iirc) and he really made the point -- we are supposed to study our children, and learn our children, so that we can guide our children.  

 

We are not supposed to choose their path, we are supposed to guide their path.

 

God is the one who has created them and he has created them with a purpose.  We do not re-make our kids just b/c we feel like "wouldn't it be nice if our kids did this or that."  It can be about our own egos and also about not trusting God.  

 

[Lecka]

I also think you need to think about what Aspergers is like.  Having a really high vocabulary score -- that is part of Aspergers.  That is not some separate thing that is not part of an Aspergers profile.  That is an associated trait for Aspergers.  

 

So you don't get to pick out the high vocabulary part and then want to reject the other parts.  

 

It does not even make sense.  

 

Especially when you keep mentioning the high vocabulary part -- yes, we get it, *your child has Aspergers.*  This is often *what it means to have Aspergers.*  

 

I mean, I get it.  

 

I just think you need to move along the path toward acceptance a little more quickly.  I do not think it is healthy for you.  I think you should release this burden.  

 

You can still do all the same things you would do otherwise ----- you are doing the same things, but you have released the burden.  That is the only change.  And then you put down your burden, and make room for joy in your life and pleasure in your child.   

 

It is worth it!  

 

It also will help your son, b/c you will have this extra joy and peace in your life.  I mean -- you can't just make yourself have it, but you can pray for it and you can make room for it.  We have to listen for God's voice and cannot do that when we are trying to fix everything on our own -- it is just not going to work out very well. Also we need to set this example for our kids.  

 

 

[MomatHWTK]

I did not know that about Aspergers and vocabulary.  That explains a lot.  Looking back I remember that we tended to emphasis DS' conversational skills a lot when he was younger too.  It is a very distinctive characteristic.  He is my firstborn so I didn't really connect it to the Aspergers.  To us he was just brilliant. ;)  (Martin Short was quoted as saying he was very self-confident because "they looove me at home." )

 

I think acceptance is a down the road thing.  In the beginning the professionals make it sound like if you get every therapy under the sun and do things just right it will make this huge difference.  They talk about early detection, early intervention, etc.  And I don't know what could have been for us because we didn't have early intervention.  But I do think the advice puts parents in a panic. Just as it does when a new study comes out every week saying if you'd done this or that your child would be OK. Sometimes it feels like every decision we face is the decision that could change everything. 

 

I try to keep the idea that if I did nothing, I would still have a wonderful child.  If I do something, I can help him maximize his wonderfulness.  :)

[prairiewindmomma]

I think this is useful in myriad ways. I work with kids at church sometimes, and I am a SN parent. I was a SN parent before I knew that I was, and I worked really hard to use the tough times I had with my son as a lens when looking at other kids. But I am not an expert on every kind of SN. And we SN parents can be a touchy bunch. There is nothing worse than knowing a kid has a SN, but not knowing what it is, if it's diagnosed, what the child is capable of vs. what is a stretch, what the parents expect, etc. and then seeing that parent frustrated, angry, or defensive when their child didn't have a good experience because you didn't know how to guide their child in the activity. I know someone who left a church partly (and largely) because she didn't feel her son with ADHD was accepted. Well, the flip side is that they spent a lot of time thinking he'd outgrow the trickier behaviors because an older sibling had really calmed down a great deal as she aged. Well, that wasn't happening with him, and he was extraordinarily difficult to handle when he was pleasant, much less when he was having a bad day--even teachers who were experience with challenging children were getting fried and sometimes hurt (minor stuff, like being scratched or bruised). This family never gave tips for how to handle things. They would say that they could come get him if needed, but when that happened, they acted kind of put out and upset that they were being singled out. It was a very tense and difficult situation.

 

There are some other kids I've worked with where I had limited information as well, but at least I'd seen the parents talk to them and work with them, and that's gone tremendously better.

I needed to see this specific message today as I just got home from teaching my SN Sunday school class and am dealing with a similar dynamic. Thank you.

[Crimson Wife]

 In the beginning the professionals make it sound like if you get every therapy under the sun and do things just right it will make this huge difference.  They talk about early detection, early intervention, etc.  And I don't know what could have been for us because we didn't have early intervention.  But I do think the advice puts parents in a panic. Just as it does when a new study comes out every week saying if you'd done this or that your child would be OK. 

 

Early and intensive intervention DOES make a big difference, but that's not a reason to beat yourself up over not knowing then what you know now. My DD would be much better off had the hearing loss been caught when it first started rather than (probably) years later. She went a long time without hearing aids and supportive technology like a FM system and targeted language intervention. I could've started the SLP grad school prereqs earlier. Maybe we could've gotten her into an oral school for the deaf like the one I visited recently.

 

I feel regret but not guilt if that makes any sense.

 

[prairiewindmomma]

 

God wants you to embrace your child as he is, the whole child.

 

Maybe you get improvement, maybe you don't, in various areas.  But I think God promises that he will be with us, not that we get the outcome we want.  

 

------------

Your job is not to say "he is supposed to be this unblemished brilliant child, and I must realize this potential or I am a failure."  

 

 

Lecka, this is a key insight, and I'm glad you shared it.

 

In the past I have fallen into the trap of "if we work hard enough" "if I research enough and find the right resources" "if I can understand what is going on then...." and we try to work our way out of how our child is different to make them fit the mold that society says that a child should fit into.  Anything less than that was MY failure as a "good" mother.

 

I think it's the bargaining phase of grief...."If I only do xyz, then God will bless me and my child and my child will be (closer to) normal."  

 

We have to learn to see our kids through God's eyes and really accept them for who they are.

 

----------

As an aside, one of the kids in my (SN) class was really squawky through sacrament meeting today. While the sacrament is being blessed and passed among the rows of families seated in the pews, we are all supposed to be reverent as the sacrament is a sacred ordinance.  Most people interpret reverent to mean quiet. I've got to say, as I watched the kid fuss and squawk, he got a lot of judgmental looks. From my perspective, I would venture a guess that Heavenly Father was more pleased with the kid than with the scowling grumpy people who were upset that the quiet atmosphere had been disrupted.  

 

I have also been guilty of looking for approval more from the people sitting around me in the pews than from my Heavenly Father.  When I prayed to see my kids through God's eyes, and I caught a glimpse of that, that really helped me let go of needing to please others.  Their comments simply don't matter. I see them for what they are--usually misunderstanding or fear or petty frustration--and it doesn't matter.  

[WoolC]

Our son officially received an ASD diagnosis this month (though I have known he was different for years) so I have been going through the mental gymnastics of deciding who to tell, who not to tell, when to explain or not pretty frequently recently. This thread has been so helpful, thank you all for sharing your experiences.

 

I agree that when you first receive the diagnosis it can put you into a panic, but I've been trying really hard to lean towards the acceptance that Lecka is describing. I want that kind of peace and joy and some days I get pretty close to it. I definitely have a long way to go in becoming that cool, collected and confident mom in public but hopefully I will get there in time.

 

What I know for sure is that my son is fearfully and wonderfully made. Yes, he has several challenges that we may or may not be able to overcome in this life, but God has a purpose for making my son exactly as he is and I'm trying to rest in that fact daily.

[Lecka]

http://www.amazon.com/Parenting-Surviving-Thriving-Building-Families/dp/1400280036/ref=sr_1_46?ie=UTF8&qid=1435535589&sr=8-46&keywords=charles+swindoll This is the book I did at Bible study several years ago.  I remembered his name while I was driving home from Target, lol. 

 

I think I need to better keep in mind, my cousin was diagnosed in about 1997.  It may have been 1996, or it may have been 1998.  Right around that time range, though.  And I am *still* hearing comments along the lines of "could, should, if only" from relatives who should know better.  They do not bother to find things out about my cousin, that they could find out.  They would rather not, though, apparently.  

 

But when it is more than 15 years ---- I am frustrated with certain people.  

 

When it has only been a month or two?  I should be more patient.  

 

I have been pretty clued in (or at least aware, or clued in on some level) for about that period of time, too, b/c I have been interested ever since my cousin was diagnosed.  I also grew up very, very close to my cousin, and it turns out in retrospect that there are things I knew about and noticed, that adults were not aware of.  

 

It was also a different time and there was not the information that is available now, and that is like night and day.  

 

But still -- it has been 15 years, and people still want to be in denial.  People still want to be dissatisfied and say "he can do this, why can't he do this."  I am sick of it.  

 

I am sorry to vent here, but honestly I am going home for the 4th of July, and it is better that I do it here than to go home and cause a scene.  

 

Separately -- my cousin's current outcome is his outcome -- it is not something where it is going to predict anyone else's outcome.  And also it is the kind of Aspergers diagnosis where he met every condition for autistic disorder (at the time my son was diagnosed a couple of years ago) when he was a child, except when he was a child they would not diagnose him with autism of any kind.  He had the same symptoms as my son at the same age, and was much more rigid.    (He would have been much less severe as a child, and his language skills were much higher, but still, he would have met the criteria ----- my mom went with me when my son was diagnosed and this is her opinion -- it is pretty solid, it is not an "I read this newspaper article" thing.)  

 

But the diagnosis he got is not necessarily representative of who is getting an Aspergers diagnosis in more recent years.  There was a lot more stigma about the word "autism" then than there is now, and things were not classified and diagnosed in the same way as they are now.  For what that is worth.  

 

He has just gotten a new job and I am praying that it goes well.  If it goes well, it is the kind of job where (God willing) he could keep this job for years and years.  He will have a job coach too, and it is a job that they think he can succeed in!  

 

I have talked to him on the phone, and he is really excited.  

 

If somebody says to me that "it is a shame for him to have this kind of job when he is so smart" I hope I can respond in some civil way while also expressing why I think it is a toxic kind of comment to make.

 

But I am a cousin and not a mother, and I do not have a mother's heart for this.  I cannot get behind the sadness and the sense that "he is going to do worse than we think he should be doing pretty much no matter what."  It is so toxic to everyone involved. 

 

But I do not think this reflects at all on any other child, I do not think it means "set your sights low."  I am just sick of the situation with certain family members.  

 

They are all great with my son, too, b/c everyone follows my lead.  And it is also different b/c we have known from early childhood, and he has always had progress.  And, he doesn't have splinter skills, so there is never this feeling of "he is doing this, so why can't he do that?"  That is what really gets to me.  It is just not that complicated to figure out after *15 years*.  And yes my cousin makes progress too!  He just does not get much recognition for it.  

[kbutton]

I'm trying really hard to not read this the wrong way, so if I do, please help me out. Is this aimed at OhE or someone who mentioned 2e stuff? 

 

I think she is concerned that she might miss something that she could very well do to help her son be more successful, not that she needs to fix things. I'm probably too close to the situation, but I've met few people as accepting of non-typical people or behavior as she is. I know people who have or have had a need to fix their kids. I've not seen this with OhE. 

 

I think this "could have been or should have been" idea is destructive.

 

You don't get to pick out the parts you like and say "these are the good parts," and then pick out the parts you don't like and say "these are the bad parts" and then act like "we should only have good parts and no bad parts."  

 

...

 

I think you need to work on accepting the child that you have.

 

Yes, balanced with wanting to do interventions and address things.  

 

But that is part of raising/guiding/teaching every child.  It is slightly different in degree.

 

But you don't get to say "if he was smart but this and that was different, then I would accept him, and I wouldn't want to pick out these certain parts."  

 

No one gets to do that.  That is not our task as parents who are entrusted with our children by God.  

 

If you think God wants you to think your son can never be good enough b/c you are not going to be able to erase his deficits, I think you are wrong.

...

 

But with some things you say, you come across like you view your son primarily as a really smart kid, and then oh, he has these challenges tacked on, and it is your job to overcome and minimize these challenges, and to succeed you must minimize them until they are nothing.  

I know more than one instance where someone didn't help to overcome or minimize specific challenges, and it either cost their child the ability to do something that definitely WAS within their ability, or they squandered the opportunity to at least try to see what would happen. That is very different than to try to squash and change a child.  Just because we aren't sure where the line is between could be and won't be is with our SN child doesn't mean that we aren't willing to accept that we can't do everything or that the child isn't who God intended him to be if our efforts fall short of where we thought they would. We often have to try things in order to know if our instincts are correct.  

 

But no, your job is to love, accept, protect, guide your child.  

 

Your job is not to say "he is supposed to be this unblemished brilliant child, and I must realize this potential or I am a failure."  

 

I really have a low tolerance for this kind of mindset, b/c I think it is harmful to children, and I think it is harmful to adults.

 

I also do not believe that this is God's plan for us.  

 

I think also -- concentrate on knowing your child as he is.  ...

 

[PeterPan]

Oh, I'm not offended.  I'm tired and hitting the hay, but not offended.  I think she was piecing together things I may have said backchannel, and I think she's right that there's been sort of a subtle shift in my mind that I hadn't caught onto.  That's why I didn't reply, because I needed to mull on it.  I've met in person someone who seemed to get such great success with their EI that it has really put me into a tizzy of are we doing enough, have I failed, if I had done such and said he wouldn't be this way, if I could hurry up and do such and such he would catch up, etc. That's not how I've WANTED to be, but that's the shift that happened.  And I'm cool with that being pointed out, because I've known for a couple weeks now I was in some angst over it.  I just hadn't connected the dots.  It's really easy to be accepting when you don't think there's a "fix".  And whether there's a fix or not, when someone *seems* to have gotten a fix for their kid (whether it objectively was or not), you end up doing a lot of agonizing, or at least I do.  And you know me, when I do things I do them GUNG HO and all the way.  :D

 

So I think she was mixing back channel and this thread and wasn't necessarily off.  I accept the criticism.  But I also don't really know how you wrangle that out about being aggressive and making things happen that need to happen and not being fatalistic.  And I know the other side (accept the disabilities) doesn't mean to be fatalistic, but that's the extremist end of that approach too, kwim?  And fatalism I DEFINITELY reject.  We're meant to work.

 

I'm assuming the balance will become more obvious to me with time, because I'll intervene on some things, realize those things are as they are, maybe start to understand him a bit better, and go ok, that's how it is and accept.  I think that's a valid point that it's possible to do things in such a way that it communicates you're broken.  I don't know.  I've been told kids also don't remember the stuff you do when they're really young and to be aggressive in these early years, get the bumps you can, and assume they'll forget the unpleasant parts.  I don't know.  I know from working with my dd that accept, accept, accept doesn't make things magically better and that sometimes you really need to buckle down and do some interventions.  I'm also realizing that our situation is made more complex because we did intervention things before we got evals.  We were doing daily gymnastics and swimming for 3-4 months before we had our first OT evals.  So you look at our BOT2 numbers, and there's this wacky spread, with crazy low scores and a couple splinter scores that were in the normal range because they were things we were working on in gymnastics.  But those *even out* to a pretty average score to where the OT goes what are you flipping out for, just some mild this or that.  Then you start asking why this is happening, why that is happening, why certain things are taking 4 times as long for him as other kids, etc.  Then you figure out that he's showing the praxis you expect in DCD or with ASD, but nobody is taking the time to parse that out and put that into words.  So then you're going back and saying man, my kid WANTS to be able to do these physical things and ENJOYS them, but without some actual PT or interventions for the DCD/dyspraxia/ASD motor planning symptoms he's not going to get there.

 

And multiply that story times about 4 (real or what it feels like, I've lost count, me and the number 4, lol) and then you see what's happening.  And I have a hard time looking at him and seeing him as he really is.  It's just me.  I feel like I don't always know what I'm seeing.  So I don't know what is minor and going to go away and what is stuck and will just moderately improve.  I agree that it's not healthy to swizzle my mind into thinking that if I get these extra interventions and work on these extra things that everything is going to GO AWAY and he'll be minus a couple labels and a lot more typical.  But getting to that accurate picture, that's really hard.  And if you remember that I've got a segment of people telling me things aren't happening and another segment saying if it's happening and you treat it early it goes away, then you start to see that's already two sets of voices.  Then bring in the third saying something more nuanced about accept him as he is (fine, but everyone disagrees on that) and just give him whatever you can within  reason.  You can see why it's like a cacophany in my head, right?  And it's almost like they're saying let go of dreams and expectations.  They don't mean that, but then whose vision do you even believe?  LOL  Seriously.  It's like those scratch and rub things where you rub off a bit more, a bit more, and you keep looking at the picture going WHAT IS THIS?

 

And I think scratch and rub is an ok place to be.  It's my fault and I need to fix you is NOT an ok place to be dwelling, and she's right.  But we can do the same things from more of a scratch and rub perspective, accepting, and that can be healthy.

 

Now for a little humor.  Dd and I started watching this series yesterday as one of those light fillers, not anything serious, but it turns out to be pretty funny.  In this episode the children confront their own hearts with the idea of WHAT IF their father could be something else...   Pretty fitting for our discussion. No rabbits were harmed in the filming of this episode.  It's just funny.  :)

 

 

[PeterPan]

Lecka, this is a key insight, and I'm glad you shared it.

 

In the past I have fallen into the trap of "if we work hard enough" "if I research enough and find the right resources" "if I can understand what is going on then...." and we try to work our way out of how our child is different to make them fit the mold that society says that a child should fit into.  Anything less than that was MY failure as a "good" mother.

 

I think it's the bargaining phase of grief...."If I only do xyz, then God will bless me and my child and my child will be (closer to) normal."  

 

We have to learn to see our kids through God's eyes and really accept them for who they are.

 

This was very profound, thank you. 

[MyHandsAreFull]

Great thread--thanks for posting.

 

My ASD kiddo is 12. When he was very young (and very challenging) I used to feel like I owed others an explanation and would make public excuses for him. Going out in public was just so anxiety provoking (for me; he was oblivious to the whole thing).

 

But now I'm just old and tired. I'm sick of having to destroy my family's lifestyle to accommodate the "sensibilities" of others.

 

So, I just don't anymore. He has a right to participate in society and to be part of the public. Sometimes he is going to say stuff that others find rude and inappropriate ("that woman is very fat", ""stupid people smoke", "that shirt is ugly"). We have worked extensively on it and will continue to do so. But, we are not going to hole up in our house to avoid unpleasant scenes.

 

If that sometimes makes other people uncomfortable then maybe they should stay home or do a little growing up. I'm not "in your face" about it but I absolutely just ignore rude comments and glares. I just don't care any more.

 

Somewhat OT, I'm appalled at the recent spate of kids and young adults kicked off planes for what I would regard as minimally out of the ordinary behavior. Certainly nothing compared to what my DS could whip out on a bad day. I'm hoping somebody successfully sues them for ADA violations.

 

OTOH, I agree with what CW said about people just being much more tolerant of physical disabilities. So likely it will be another generation or two before this category of disability has real civil rights.

[Slache]

I am so grateful for this thread. I've learned so much. Thank you.

[kbutton]

That makes sense. And Lecka, I wasn't trying to single out your comments as aggressive--I just felt like I was missing something and trying to understand the context. For the most part, I agreed with what you said; it just seemed to be a bit of context when I was reading it. I hope I didn't sound like I was barking at you.

 

Oh, I'm not offended.  I'm tired and hitting the hay, but not offended.  I think she was piecing together things I may have said backchannel, and I think she's right that there's been sort of a subtle shift in my mind that I hadn't caught onto. 

 

I actually heard some really discouraging things today that are probably making me feel conflicted. I am afraid I'm witnessing a situation where people are trying to fix their child, and not from a position of research about what is going on. 

[samba]

Lecka,

Thanks for sharing the Swindoll study info.  It reminded me that Insights for Living has several resources for parents of special needs kids, including a book by his daughter that I thought sounded good a long time ago and had forgotten about.  

 

OhE and others,

I am actually in a good place (now) with regard to the co-op issue.  I feel like the rejection, although painful, was a blessing in disguise.  We almost spent a lot of money (a lot!) to find out that the people in charge really would not have know what to do for my son or how to enrich his experience (there were some red flags but I was so desperate I was willing to overlook them).  This past school year sucked, big time.  I was so done and ready to hand him over to someone else to deal with.  Now that that option is gone, it has forced me to get reinspired, reengaged with ds, look for new things that will help but also bring enjoyment.  I am actually a little excited. We have freed ourselves from some other very draining responsibilities so that I can really focus on schooling and parenting ds...and dd :). We will be changing up some curricula but mostly expanding his experiences, interests and strengths.  Ds is already involved with martial arts and special olympics seasonal sports. We'll be expanding his swimming to year-round and possibly starting piano lessons (with a teacher who gets raves from parents of SN kids). It's all good...

 

OhE,

All I saw when I met your son was the adorable and the freckles :).  And that you're awesome, as always.  :grouphug: Thanks.

[PeterPan]

 

I actually heard some really discouraging things today that are probably making me feel conflicted. I am afraid I'm witnessing a situation where people are trying to fix their child, and not from a position of research about what is going on. 

Do you think maybe it's a stage of grief people go through, as Prairie was saying?  Also, not to state the obvious, but not everybody approaches therapies the same, lol.  Not everybody walks into the therapy and goes Oh btw I'm going to learn this and do it myself or Oh I've been reading three books on the theory behind this, let's contrast.  In fact, I would say there's a whole segment of the population that looks for something middle of the road that blends what they can afford and what gives them hope that it might work.  Unfortunately, the longer-term therapies are hardly affordable and take so long they don't seem to work.  So it's just sort of a different mindset.  Life isn't fair, and not every kid gets effective therapy.  Not every family can afford effective therapy, and even if they had effective therapies kids won't all have the same outcomes.  And that's what Lecka has been challenging me on backchannel, to remember that EVEN IF your dc had all the same therapies, your dc is genetically different and just his own situation.  He might have had a totally different outcome, even with the same therapies.

 

And why, in the providence of God (or path of life or whatever term others use) we have these mistakes we have to deal with, I don't know.  To me, it would have been a lot more tidy if I had called in EI and gotten a bunch of this stuff diagnosed at 1 1/2, which it would have been.  Seriously, in hindsite I see that.  In the moment I did what seemed best, and in reality I got him way better therapy than what he could have gotten locally.  I was so worn out from taking him on all those therapy trips and doing things home, could I have handled more?  So I don't know why on that one.  But I know we're getting it NOW and that NOW we're getting interventions.

 

(removing rabbit trail)

 

Someone popped this into my FB feed and it seems to fit here: God's will is what we would choose if we knew what God knows.  --Nancy Leigh DeMoss

 

[WoolC]

Do you think maybe it's a stage of grief people go through, as Prairie was saying? Also, not to state the obvious, but not everybody approaches therapies the same, lol. Not everybody walks into the therapy and goes Oh btw I'm going to learn this and do it myself or Oh I've been reading three books on the theory behind this, let's contrast. In fact, I would say there's a whole segment of the population that looks for something middle of the road that blends what they can afford and what gives them hope that it might work. Unfortunately, the longer-term therapies are hardly affordable and take so long they don't seem to work. So it's just sort of a different mindset. Life isn't fair, and not every kid gets effective therapy. Not every family can afford effective therapy, and even if they had effective therapies kids won't all have the same outcomes. And that's what Lecka has been challenging me on backchannel, to remember that EVEN IF your dc had all the same therapies, your dc is genetically different and just his own situation. He might have had a totally different outcome, even with the same therapies.

 

And why, in the providence of God (or path of life or whatever term others use) we have these mistakes we have to deal with, I don't know. To me, it would have been a lot more tidy if I had called in EI and gotten a bunch of this stuff diagnosed at 1 1/2, which it would have been. Seriously, in hindsite I see that. In the moment I did what seemed best, and in reality I got him way better therapy than what he could have gotten locally. I was so worn out from taking him on all those therapy trips and doing things home, could I have handled more? So I don't know why on that one. But I know we're getting it NOW and that NOW we're getting interventions.

 

(removing rabbit trail)

 

Someone popped this into my FB feed and it seems to fit here: God's will is what we would choose if we knew what God knows. --Nancy Leigh DeMoss

I do think it's partly a stage of grief. For us, I knew something was up by 18 months, there were clues earlier, but he was my oldest so I had nothing to compare to. We saw a neurologist and developmental psychologist and they pinned it on temperament and sensory processing. Even then, I think I knew deep down that those things didn't explain the whole of what I was seeing, but I wanted to believe it. So, definitely, I wonder what if I had pursued it and pushed for what he needed then. I wonder if we'd still be dealing with some of the extreme behaviors now. I second guess constantly about what I would have done differently. But it is what it is. So trying to accept God's purpose in it all has been the only thing helping me to achieve any kind of balance. It's a daily struggle.

 

Even now we are on 6 month waiting lists for appropriate services so we're still not to a point where I feel like we're doing anything to help him cope with his challenges. I'm reading as much on various therapies as I can stomach at this point. Like you, I'm a pretty gung ho person and when I think something will "work" I go after it full steam. It's difficult to not to get sucked into the mind set that this is a "problem to be fixed."

 

So anyway, it's definitely hard to keep the right perspective for me anyway. I so identify with the emotions in this thread!

 

Lecka, thank you for linking to the Bible Study. I went ahead and ordered a copy, looking forward to reading it!

[merry gardens]

Here's one coping strategy to survive life with our fellow humans: When people make unkind remarks, give them the benefit of any doubt and assume they did not intend to be unkind. Not everyone uses the same vocabulary, and many words have different connotations to different people. Some seemingly normal people can't always find the proper word at times. Plus, words and terms can change over time and not everyone keeps up with the changes. The "r" word was once used as a diagnostic term without any malice. "Backwards" might be a decent description for some learning styles, similar to the title of the book "Upside-down Learners". Social clues may help clarify if they intended to insult, but even then some people are socially awkward and may say things that come across as insults. Treat people who say potentially rude things as if they may have a need for accomodations for their language or social issues. Don't assume they meant to insult your parenting skills or your child.

[OneStepAtATime]

Here's one coping strategy to survive life with our fellow humans: When people make unkind remarks, give them the benefit of any doubt and assume they did not intend to be unkind. Not everyone uses the same vocabulary, and many words have different connotations to different people. Some seemingly normal people can't always find the proper word at times. Plus, words and terms can change over time and not everyone keeps up with the changes. The "r" word was once used as a diagnostic term without any malice. "Backwards" might be a decent description for some learning styles, similar to the title of the book "Upside-down Learners". Social clues may help clarify if they intended to insult, but even then some people are socially awkward and may say things that come across as insults. Treat people who say potentially rude things as if they may have a need for accomodations for their language or social issues. Don't assume they meant to insult your parenting skills or your child.

I agree.  In my post regarding the Sunday School teacher's husband, he is honestly a very nice man.  I don't think he intended any malice.  He's just not very social and he genuinely had no understanding of dyslexia.  He is also 20 years older than me at least so comes from a different generation with a different set of experiences and perceptions.  Because of that, I didn't chew him out or leave.  I worked to try and educate him a bit and to deflect the wording for DD's sake.  It was still upsetting inside, but I tried hard not to show that and to be understanding.

 

Our neighbors that do not support our homeschooling decision I have also tried to be understanding with.  At this point, though, it is exceedingly difficult to do so.

 

I do find that most people that actually matter in our lives try to be supportive and understanding of the kids' differences/areas of struggle or our decision to homeschool, at least once I make an attempt to educate.  

[kbutton]

I think that's likely the case broadly speaking. The situation that has me a bit freaked out seems to be different. It's a family in crisis, for sure.

 

Do you think maybe it's a stage of grief people go through, as Prairie was saying?  

 

[kbutton]

Lecka--I hope your family visit goes better than expected and that whatever happens, you have a good visit with your cousin. 

[Heathermomster]

I was raised with a blind and severely handicapped sister.  Every trip in the car was an event.  Every trip to the store, restaurant, mall, or church was filled with looks and comments.  We received Kimye attention except that absolutely so one wanted to be us.  People used to walk up to us and give us quarters, and we weren't begging.

 

As we grew up, people utterly ignored us and acted like we did not exist.  We became invisible.  It hurt sometimes.  I was embarrassed at times. We also laughed a lot to cope. As an adult, I have come to terms with the circumstance, but I can't tell you how.  

 

Some things just are.  I just accepted that God made my sister that way. I don't know why; I just know that HIS plan is perfection.  Am I better for the experience?  I certainly hope so.  We nearly lost our DD when she was 9 weeks old.  My experience with my sister certainly prepared me for dealing with the daily issues we face.  

 

People will hold all kinds of opinions about you and your family, but at the end of the day it simply doesn't matter.  The thoughts and feeling of others does not change the basic facts of your daily existence.  The only thing that matters is that you are in a right relationship with the LORD and that you are on good terms with those closest to you.

 

To answer the original question, I think the term backwards is goofy.  Yes, there were comments about DS because he was so clumsy. 

 

The ASD diagnosis is very new, and I think that you are going through a mourning period.  These things just take time. 

 

 

[Crimson Wife]

  It's really easy to be accepting when you don't think there's a "fix".  And whether there's a fix or not, when someone *seems* to have gotten a fix for their kid (whether it objectively was or not), you end up doing a lot of agonizing, or at least I do.  And you know me, when I do things I do them GUNG HO and all the way.   :D

 

I don't mean to be a Debbie Downer, but I don't think SN's ever really get "fixed". A dyslexic who does years of intensive O-G based intervention (LiPS, Barton, etc.) may improve their functioning level enough such that they now fall within the normal range. But they've still got a dyslexic brain, KWIM? I think the same goes for kids with ASD who get intensive ABA/RDI/Floortime/SonRise/etc. and fall into the 20% who are "optimal responders".

 

The Serenity Prayer is a bit of a cliche but it's true IMHO for parents of SN kids. Do what we can to improve our child's functioning level but still accept that there are things that probably can't be changed. Take things one day at a time and don't feel guilt over the past since it can't be changed.

[Crimson Wife]

 

And why, in the providence of God (or path of life or whatever term others use) we have these mistakes we have to deal with, I don't know.  To me, it would have been a lot more tidy if I had called in EI and gotten a bunch of this stuff diagnosed at 1 1/2, which it would have been.  Seriously, in hindsite I see that.  In the moment I did what seemed best, and in reality I got him way better therapy than what he could have gotten locally.  I was so worn out from taking him on all those therapy trips and doing things home, could I have handled more?  So I don't know why on that one.  But I know we're getting it NOW and that NOW we're getting interventions.

 

I'm not sure that the EI interventions would've been helpful if you hadn't done PROMPT. My little one was in EI and while it was good for her, she was already verbal (albeit delayed) when she started. I'm not sure that they would've been able to help her nearly as much if she'd been non-verbal. Yes, they did PECS to help the kids communicate but that's a work-around rather than a solution like PROMPT.

 

[PeterPan]

I don't mean to be a Debbie Downer, but I don't think SN's ever really get "fixed". A dyslexic who does years of intensive O-G based intervention (LiPS, Barton, etc.) may improve their functioning level enough such that they now fall within the normal range. But they've still got a dyslexic brain, KWIM? I think the same goes for kids with ASD who get intensive ABA/RDI/Floortime/SonRise/etc. and fall into the 20% who are "optimal responders".

 

The Serenity Prayer is a bit of a cliche but it's true IMHO for parents of SN kids. Do what we can to improve our child's functioning level but still accept that there are things that probably can't be changed. Take things one day at a time and don't feel guilt over the past since it can't be changed.

My head tells me the same thing, but why do you have places like NILD saying people used them and "overcame" ASD (as if it's some mountain in the way of your life) or that kids, who were never properly labeled and given DSM codes in the first place, now mainstream and don't need IEPs...  That sure sounds like implying if you'd do X your problems would go away

[mamashell]

I think this "could have been or should have been" idea is destructive.

 

You don't get to pick out the parts you like and say "these are the good parts," and then pick out the parts you don't like and say "these are the bad parts" and then act like "we should only have good parts and no bad parts."  

 

It has always been what it has been.  Maybe you knew one part first, and then you found out about the other part.  

 

But it has always been there -- your child.

 

You don't get to say "I like his smart side but I don't like his difficult side."  

 

You don't get to re-make him as a different person.

 

I think you need to work on accepting the child that you have.

 

Yes, balanced with wanting to do interventions and address things.  

 

But that is part of raising/guiding/teaching every child.  It is slightly different in degree.

 

But you don't get to say "if he was smart but this and that was different, then I would accept him, and I wouldn't want to pick out these certain parts."  

 

No one gets to do that.  That is not our task as parents who are entrusted with our children by God.  

 

If you think God wants you to think your son can never be good enough b/c you are not going to be able to erase his deficits, I think you are wrong.

 

God wants you to embrace your child as he is, the whole child.

 

Maybe you get improvement, maybe you don't, in various areas.  But I think God promises that he will be with us, not that we get the outcome we want.  

 

Really -- maybe you are not that far down this path. 

 

But with some things you say, you come across like you view your son primarily as a really smart kid, and then oh, he has these challenges tacked on, and it is your job to overcome and minimize these challenges, and to succeed you must minimize them until they are nothing.  

 

But no, your job is to love, accept, protect, guide your child.  

 

Your job is not to say "he is supposed to be this unblemished brilliant child, and I must realize this potential or I am a failure."  

 

I really have a low tolerance for this kind of mindset, b/c I think it is harmful to children, and I think it is harmful to adults.

 

I also do not believe that this is God's plan for us.  

 

I think also -- concentrate on knowing your child as he is.  I did an entire Bible study on this a few years ago (Charles something, I am blanking right now, but he is associated with Dallas Theological Seminary iirc) and he really made the point -- we are supposed to study our children, and learn our children, so that we can guide our children.  

 

We are not supposed to choose their path, we are supposed to guide their path.

 

God is the one who has created them and he has created them with a purpose.  We do not re-make our kids just b/c we feel like "wouldn't it be nice if our kids did this or that."  It can be about our own egos and also about not trusting God.  

 

nm

[Lecka]

Kbutton -- I was responding to something from a private message there.  I agree with what you are saying.

 

WoolC -- My son has been in a home ABA program and if you are going towards ABA, I know 2 books that are written for parents who are waiting for ABA services.  I also know a decent amount about functional behavior assessments, which would be part of how you address behavior if you are going with ABA.  They both (iirc) also have info about how to judge if you are getting quality/ethical ABA services.  

 

http://www.amazon.com/Early-Start-Your-Child-Autism/dp/160918470X/ref=sr_1_2?ie=UTF8&qid=1435598810&sr=8-2&keywords=autism+early+denver

 

http://www.amazon.com/Verbal-Behavior-Approach-Children-Disorders/dp/1843108526/ref=sr_1_1?ie=UTF8&qid=1435598988&sr=8-1&keywords=mary+barbera This is my favorite.  A lot of it is for early language skills, but it has a good section on behavior, too, and introduces a lot of terminology in the easiest way I have come across.  I also have read through a lot of her website.  

 

http://www.amazon.com/Stop-That-Seemingly-Senseless-Behavior/dp/1890627763/ref=pd_bxgy_14_img_y This link has two companion books about functional behavior analysis, too. 

 

My son used to have severe behaviors and fba really does help.  

 

I never read about it before we had a therapist, so I have always had a therapist to identify functions and how to respond, but I needed to read about it to understand what the concepts are and the terminology.  

 

I would not have been able to implement it without the therapist, probably, but I could have been doing a little bit better, I think.

 

I can also say, to be encouraging, behavior is an area where many, many kids make a lot of improvement with ABA.  My son has had major improvement with his behavior, too.

[Heathermomster]

My head tells me the same thing, but why do you have places like NILD saying people used them and "overcame" ASD (as if it's some mountain in the way of your life) or that kids, who were never properly labeled and given DSM codes in the first place, now mainstream and don't need IEPs...  That sure sounds like implying if you'd do X your problems would go away

Maybe the word "overcame" is code for "functional" workarounds and strategy.  

 

DS overcame his issues with dividing decimals by using a calculator...The dyscalculia is still present but he's functional,

[Crimson Wife]

My head tells me the same thing, but why do you have places like NILD saying people used them and "overcame" ASD (as if it's some mountain in the way of your life) or that kids, who were never properly labeled and given DSM codes in the first place, now mainstream and don't need IEPs...  That sure sounds like implying if you'd do X your problems would go away

 

I don't know that the issues go away so much as that the child learns to compensate well enough that he/she can participate successfully in a mainstream class without extra support services.

 

A lot of deaf kids now who get cochlear implants as babies and intensive speech & language intervention as toddlers & preschoolers are able to mainstream by kindergarten with only a 504 accommodation plan rather than an IEP. They still have the hearing impairment and will until such time as doctors can grow new cochlear hair cells in a lab & successfully transplant them into the patient (hopefully in the next 10-15 years or so). But the disability no longer keeps them out of a mainstream setting.

 

I think the same thing can be true with other SN's including HFA & Asperger's. I don't know if my DD's functioning level will ever improve enough for her to fully mainstream, but that's the hope. TBH, I was more optimistic about that happening 6 months ago prior to the discoveries of the hearing loss and the working memory deficit. But we'll just have to see how much the hearing aids help and add in more WM remediation.

[Lecka]

The way things are set up in our district, "fully mainstreamed" is very common.  Now, my son has supports and an IEP.  But they actually do not have a self-contained classroom for autism for my son's age.  They are focusing on social as the top priority (or at least higher than some other things, I guess not the very highest) and they think it is important for little kids to have peer models for social reasons.  But then some kids, as a normal part of this set-up, leave full mainstreaming in 4th grade b/c they have gotten the social benefit, and the 4th grade is when kids are doing a lot of seatwork and listening to lectures and it is not a social atmosphere in the way a K or 1st grade classroom is.  They say it is easier with the little kids.  It is just how they have decided to do it here.  

 

I do know the parents of an older-elementary boy who is a lot higher-functioning, and he is fully mainstreamed and they want him to have an IEP for pragmatic speech.  You do not need an IEP for the social skills group.  You do not need an IEP for RTI.  You do not need an IEP for some teacher modifications/supports that he gets, with his mom talking to the teacher and sharing information with her.  

 

He actually has quite a bit of trouble.  But he is also doing really well.  

 

But I think, for where I live, I know a lot of kids who are fully mainstreamed and some of them don't have an IEP.  A lot of them have come a long way and made major progress.  I really stop short of saying they do not have any problems, though.

 

I think there are different code words, and you are supposed to read between the lines a bit.  I may not be reading between the lines properly, b/c honestly, there is different criteria for "fully mainstreamed" in various places -- it is not something with one definition.  There is a boy who moved to our district who had been in self-contained classrooms, and he was placed into a mainstream classroom when he got here.  For "no IEP" -- here a lot of kids don't have IEPs.  People do not care (like I don't care) about making a paper trail for an elementary school student.  If they can get by without an IEP and things go well, it is what a lot of people do.  Plus -- we have RTI in our district, which is about kids not needing IEPs.  

 

B/c when I read that, I am thinking "I notice they do not say indistinguishable.  I notice they do not say the child no longer meets the criteria for diagnosis."  B/c if that is what they meant -- they would say it.  But they are not saying that.  

 

I think they are saying "we are getting really good results and we think our program is great, but we are not promising for kids to be indistinguishable or to not longer meet the criteria for diagnosis."  

 

But it is also something where b/c of how it is set up in my district, at this point, even though we really don't know, I would guess my son will be fully mainstreamed (with an aide, right now not needing an aide is not on the table, but it is considered possible for him to no longer need aide support sometime in 1st or 2nd grade) but also be likely to be in a self-contained classroom and even adaptive P.E. and possibly adaptive other electives, in middle school.  That is a pretty normal trajectory.  But I don't know.  I do hear really good things about the middle school program, but I don't know if my son will be in it.  It is not the same program where they have the Movie Club and do that big social learning program.  I have been told my son could be in the Movie program.  I have been told he might be in the self-contained program.  It is all very "wait and see, we can't predict how kids will do when they are only 5 or 6."  I have heard they can tell more from when kids are 8.  Then I have been told by one person, they can't predict what kids will be able to advance in abstract learning and what kids won't be able to as well.  And that is like a 4th-grade thing.  Then I have been told some kids reach the abstract learning stage but it is a little later than 4th grade.  Nobody knows.  

 

But anyway -- you can see from this, why I take the "full mainstreaming" thing with such a grain of salt.  

 

In Crimson Wife's district it sounds like it is a lot more meaningful as a thing to talk about and say the child can do it.  For ours, doing it in early elementary does not in any way imply you will keep doing it past 4th grade, or possibly past 7th grade. 

 

[Heathermomster]

Lecka, does no IEP in grammar stage make getting the IEP more difficult at a later date?  Also, how does no IEP affect standardized testing?  Will a public school provide extra time on a standardized test without an IEP?

[Lecka]

Well, apparently, with the standardized testing we have now, anyone can have unlimited time (in our state, is my understanding).  This is the school testing, we do not have much, just MAP testing so far (we are not in a crazy testing state).  

 

But, they require one proctor with a student, to stay with the student.  

 

So this means it is hard to get do it by yourself with no distractions.  If they can they want kids to be in a group of 3 or 4, if they need to be in a small group and not taking it in a computer lab with 30-40 people.  

 

I do not think it makes it harder to get an IEP later.  It is not easy to get one younger, if it is not something obvious.  

 

With my younger son, everything is so easy, b/c everything is really obvious.  I get such red carpet treatment, as far as everyone just accepting "yes, he has autism, these are his needs."  

 

With my older son with dysgraphia, it has been like -- I have mentioned it, and then he has had classroom accommodations (just the teacher being nice, oral answers, her telling him something can be shorter, she helps him get started, mini-goals or help breaking things into smaller parts ------ these are the "standard ADHD accommodations" at his school, that teachers just do, b/c they have been to workshops and there is this program the counselor does for ADHD and it coordinates through the school with teachers.  My son does NOT have ADD/ADHD but those accommodations have been great for him.  But the school would rather do that and keep kids off of IEPs.  

 

But my understanding is that some kids then never need IEPs, some kids go on and get them later.  

 

I think on the whole -- when is it ever easy to get an IEP, if they are not going "yes, I see it."  

 

And then when they are going "we will work for you" and then it is like "well he is doing well in class and getting good scores on MAP testing" and I have let it die.  

 

But I am getting it this time!  

 

I really am!  

 

I do have the private testing and diagnosis for dysgraphia now.  

 

He had his IEP for speech, for articulation.  He was in reading pull-out and "working with the aide in the hallway" during K and half of 1st -- no IEP for reading of any kind.  The speech therapist privately told me that I should get him private therapy.  He did keep his speech IEP so that OT could be a secondary service.  Then he exited OT services and I let it go then, I didn't try to get accommodations then --- honestly he brought home some beautiful spelling tests and I thought everything would be fine, even though the school OT told me at the exit meeting that she thought he had dysgraphia.  I did not want to hear it though, I didn't realize how the spelling test handwriting would not carry over to writing a sentence or more.  

 

I think that our school district is not too good for learning disorders.... I think it is difficult at any time.  I think it is difficult to keep an IEP once you have it, they try to reduce services and take away accommodations.

 

Autism is not like that for my younger son.  It can be like that for the higher-functioning kids where there are people sitting there thinking "this kid doesn't need this."  Or so I hear from my friend who is trying and trying to get her son speech therapy for pragmatic language with a diagnosis of high-functioning autism.  But they do not think he needs it (or maybe just that he doesn't qualify).  

 

I had a woman *role her eyes at me* at an IEP meeting for my older son when he was in 2nd grade.  Other people at the meeting were totally nice, but she *rolled her eyes.*  I met her again at an IEP meeting for my younger son, and she was absolutely lovely, she was really nice to me, she was very positive, she said she would love to work with my son if he is ever placed into her resource room (as she takes kids who are higher-functioning than my son is at this point).  

 

I do not know many people at all with older kids, and I am much more aware of what is going on for the autism options, and then more for the non-fully-mainstreamed options.  So, I don't really know about the standardized testing then.  

[Crimson Wife]

Lecka, does no IEP in grammar stage make getting the IEP more difficult at a later date? Also, how does no IEP affect standardized testing? Will a public school provide extra time on a standardized test without an IEP?

504's frequently cover test accommodations.

 

IEP's provide services like speech, OT, social skills group, reading specialist pull-out, etc. The state ed code has definitions of how impaired a student needs to be in order to qualify for specific IEP services. So my DD qualifies for language delay services from the SLP but not articulation because she falls within the normal range for her articulation. The SLP will correct her if there's an articulation error but there is no specific articulation goal.

 

IEP's offer greater legal protection for the student so I would fight any attempt to switch my DD from an IEP to a 504.

[Crimson Wife]

DP

[Lecka]

Oh, and I should say, I would take a 504 for my son for dysgraphia, if that is what they end up saying.  Right now the school psychologist is saying he will qualify for an IEP.  But it is still early stages.  

 

I kind-of don't have a clue what I am doing, I am just doing my best.  

[kbutton]

My head tells me the same thing, but why do you have places like NILD saying people used them and "overcame" ASD (as if it's some mountain in the way of your life) or that kids, who were never properly labeled and given DSM codes in the first place, now mainstream and don't need IEPs...  That sure sounds like implying if you'd do X your problems would go away

 

Overcame is motivating language to some people. 

 

I do think that some people really believe that their children are cured of autism or learning disabilities, and organizations that are trying to appeal to parents maybe can't say "cured," so overcame is the next best thing. If someone believes that autism can be cured, they may not be willing to try treatments that don't promise heady things. If you say something to those parents along the lines of, "Well, no matter what we do, your child will still have autism." That may be realistic, but it cause a lot of people to walk and go to the shady practitioner who does make promises. 

 

I can't imagine being a practitioner of some kind that can offer a lot of valuable resources to a family whose child needs those resources, but then have to constantly manage expectations. How they use language is one aspect of that, I suppose.

 

I think this was hinted at earlier, but some of these treatments are self-selecting or function as self-selecting. They either appeal to certain kinds of cases, or they are in place in therapy setting that has already pre-sorted client either by ideology or by current abilities. If your child has extreme behavior issues, they may not be accepted in hte Christian school, so NILD may not ever see that child. Sorry for 

 

my groken English. The computer is working very slowly, and some letters are missing. Others are mistakes, but trying to backspace is making it worse.

[Storygirl]

kbutton, what you are saying makes sense to me. Maybe when we make decisions about therapy options for our kids, we need to look past the marketing to discern the underlying philosophy that drives the curriculum and procedures. And that can be tricky to figure out.

 

I think it would be a different experience to work with an organization that truly thought they could "cure," "fix," or "overcome" learning disabilities than it would be to work with an organization with the philosophy that intervention can make a difference in current and future functioning of someone with a lifelong disability. Even if they were using the same techniques.

[PeterPan]

Or third scenario: That someone has their mix that will have some GOOD and some bad, and that you're going to make progress making the mix livable.  What bugs me is when someone makes it sound like the mix is all BAD.  Even the IEP process, by law, isn't allowed to do that.  They actually have to ask the parent whether they have addressed the STRENGTHS as well as the weaknesses.  

 

So flip it.  If you can cure it, meaning you made the bad went away, then you deny the good was ever there, the completeness of the profile.

 

But yes, I agree, that it's much more encouraging to work with a place that actually expects progress than a place that goes oh, keep doing this...  I think we can want results AND view our kids holistically.

[Crimson Wife]

Some disabilities have the potential for a cure down the road. My daughter's hearing loss I'm optimistic that at some point will be cured. Ditto for vision impairments. Down Syndrome has the potential if the scientists are able to suppress the extra chromosome in humans the way they recently figured out how to do in some animal (mice?)

 

LD's that are due to brain wiring I think are going to not have cures but rather more and more effective strategies for remediation.

[Tiramisu]

Thank you to everyone who participated in this thread. I can relate to so much of what all of you shared. Your comments, especially Lecka's, will give me some things that I really need to think about.

 

My dd9's blood test showed that she probably had mono during the time she had the big behavior change a few months ago. She was a happy ADHD/sensory kid before and now she has negative thoughts and can get really anxious and angry. I would love to return to the crazy fun times with her. Before I was embarrassed by her wearing the same outfit everyday; now I'm on pins and needles wondering how rude she's going to be when I'm with her outside the house. I like the weird outfits, messy hair, and hyperactivity a lot better. At least I can find those things amusing.

 

Another child recently used a sanitary napkin to blot her lipstick. Fortunately, it was unused.

 

Sometimes I wonder if I could have done anything better to prevent these behaviors, but I don't think I could have done anything to make a kid insist on wearing the same outfit everyday or another use a maxi pad on her lips. I couldn't have done anything about the mono if that's really the explanation for the change.

 

I don't think anyone in my house is actually 2E. But as the np said about my oldest, there are things that will be very easy and other things that will be impossible. That seems to fit all of us, and there are surprises in both directions everyday.

 

Not too long ago, the ASD question was brought up, and while it's still a possibility, it's unlikely that any of mine would technically qualify according to the specialists we've been dealing with. But there's not a better name than Aspergers that explains the issues. So while I don't technically have that as an explanation for their inappropriate and difficult behaviors and their functional challenges, it helps me to think that they are that but just not enough--To accept that they are just different. I think I had better cultivate an acceptance and better attitude about it all.

 

I wish I could get help from an ABA to figure out what bad behaviors I'm reinforcing.

[PeterPan]

Thank you to everyone who participated in this thread. I can relate to so much of what all of you shared. Your comments, especially Lecka's, will give me some things that I really need to think about.

 

My dd9's blood test showed that she probably had mono during the time she had the big behavior change a few months ago. She was a happy ADHD/sensory kid before and now she has negative thoughts and can get really anxious and angry. I would love to return to the crazy fun times with her. Before I was embarrassed by her wearing the same outfit everyday; now I'm on pins and needles wondering how rude she's going to be when I'm with her outside the house. I like the weird outfits, messy hair, and hyperactivity a lot better. At least I can find those things amusing.

 

Another child recently used a sanitary napkin to blot her lipstick. Fortunately, it was unused.

 

Sometimes I wonder if I could have done anything better to prevent these behaviors, but I don't think I could have done anything to make a kid insist on wearing the same outfit everyday or another use a maxi pad on her lips. I couldn't have done anything about the mono if that's really the explanation for the change.

 

I don't think anyone in my house is actually 2E. But as the np said about my oldest, there are things that will be very easy and other things that will be impossible. That seems to fit all of us, and there are surprises in both directions everyday.

 

Not too long ago, the ASD question was brought up, and while it's still a possibility, it's unlikely that any of mine would technically qualify according to the specialists we've been dealing with. But there's not a better name than Aspergers that explains the issues. So while I don't technically have that as an explanation for their inappropriate and difficult behaviors and their functional challenges, it helps me to think that they are that but just not enough--To accept that they are just different. I think I had better cultivate an acceptance and better attitude about it all.

 

I wish I could get help from an ABA to figure out what bad behaviors I'm reinforcing.

So what are they recommending you DO about this?  

[wapiti]

. 

 

[Tiramisu]

So what are they recommending you DO about this?  

 

Nothing specific beyond what we are doing. They know we've done or are doing therapy, but it's normal stuff. I wonder if it would make a difference if the therapy would be approached as though it were ASD...even if it's not.

 

About the medical stuff, the doctor said that some people don't believe PANS (pediatric acute-onset neuropsychiatric syndrome) exists and if it does there's not treatment if it was triggered by a viral agent, which would be different if it were strep-induced. The treatment would be therapy and anti-anxiety/anti-depressants like SSRI's. Our attempts at therapy were so bad that the therapist told us she's just not ready because it's almost too traumatizing for her. And she's a play therapist. Right now dd is in gymnastics camp. I wanted to see if having her do something she really likes for hours everyday would help her. The first two days have been boring, she said, which is really disappointing. If she's with friends or doing things she really likes, she's distracted and happy, but she really lets me have it when she gets home. She's with a friend right now and I'm dreading seeing what she's like when she comes home.

 

ETA: She's doing great with her vision therapy. Really great!

[Tiramisu]

FWIW, mono/EBV comes up in PANS discussions quite often.  Our immunologist tested ds12 for it (one of the few things he doesn't have, LOL).  Apparently, like a lot of other infections we are looking at, it's prevalent but doesn't necessarily become a problem unless the immune system is, shall we say, having issues.

 

(if you run out of ideas, I think Buhner has an herbal protocol I could hunt down on his website.  This road is a total can of worms, I tell you)

 

It does seem like a can of worms. And I don't think I'm ready to do meds even though I filled the script. It's summer so dh is available more and that has made things more manageable. We also aren't doing any school and that has helped a lot.

 

Would allergies indicate immune issues?

 

I remember when she was really sick in February and I thought it was the flu, she would cry out for me. Even though I was right in front of her, she didn't see me. It was scary and I sometimes wonder if she was affected neurologically at that time. Even with all the stress we've had, she seemed fine until that illness.

 

I could try to look up the protocol. She has been good recently about taking probiotics and fish oil.

 

Her vitamin D was also normal. The doctor was impressed with that because most of her patients are not. Her sugar was high but she wasn't fasting. She has no other signs of diabetes. I wish I had a blood sugar monitor, but I'd get obsessive about it. 

 

BTW, when I recently talked to the therapist about our ASD symptoms, including mine, she said it sounded more like OCD. But she admitted that it could be the chicken and the egg thing.

[wapiti]

.