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#1 mom of 2 boys

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Posted 07 March 2017 - 05:54 PM

I have a new respite provider, and this one is honestly much, much better than the last one. But, of course, she's not perfect, and last week she was just going on and on about how if (when?) I put my son in school (this is not even on the table), he would need a 1:1 aide. She said that he's so intelligent, but that he will need to learn to function without said 1:1 aide if he ever wants to get a job in his chosen field. I need this like a hole in the head. Of course, I felt the need to educate her about why a 1:1 aide is not the answer to all of life's problems. She was pretty good about it, but still! I'm sick of people treating me like I make the decisions I make because I'm uninformed. 

 

So then today, my son started a new gym & swim class. This class had more kids than he was used to, but otherwise everything was the same as his last one (just a different day.) He has a 1:1 aide for this class, and he did poorly because there were too many kids and he just couldn't function. He was laying on the gym floor and grabbing people's things by the bleachers. He's been having behaviors since we left. 

 

I'm just feeling so discouraged and like I can't possibly do the right things for him given the options we have. Would it kill someone to just say something encouraging to me! "Hey, I noticed your son got invited to a birthday party because a kid actually wanted him there!" "Hey, your kid just explained density to me, good thing you have him in an environment where he can pay attention and learn!" "Hey, your kid was the only one in his group to move up to the next level in swimming!" NOPE. It's always "you suck, your kids going to fall on his face in 15 years because of your bad decisions." That's what it sounds like to me at least. 

 



#2 OneStepAtATime

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Posted 07 March 2017 - 06:09 PM

Awe I am so sorry! Huge, enormous hugs. So many people think they know better and if you had just done x and such you wouldn't have these issues. It's bunk but trying to convince someone who hasn't been in your shoes can be a real uphill battle. In the meantime no one is really appreciating the hard work you and your child are putting into this process. And it stinks. It wears you down. It feels like an anvil on your chest and it is all on your shoulders. I wish I could give you a hug and some help in real life. You are doing whatever you can for your child. You are shouldering a huge burden and working hard. Whatever anyone else says, they can't take that away. Let them know you don't need criticism you need support. If they can't provide support their opinions are no longer needed. Again huge hugs.
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#3 Moved On

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Posted 07 March 2017 - 09:28 PM

Yes, big hugs from me too :grouphug:

Edited for privacy.


Edited by Moved On, 18 August 2017 - 06:45 PM.

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#4 OhElizabeth

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Posted 08 March 2017 - 10:34 AM

I have a new respite provider, and this one is honestly much, much better than the last one. But, of course, she's not perfect, and last week she was just going on and on about how if (when?) I put my son in school (this is not even on the table), he would need a 1:1 aide. She said that he's so intelligent, but that he will need to learn to function without said 1:1 aide if he ever wants to get a job in his chosen field. I need this like a hole in the head. Of course, I felt the need to educate her about why a 1:1 aide is not the answer to all of life's problems. She was pretty good about it, but still! I'm sick of people treating me like I make the decisions I make because I'm uninformed. 

 

So then today, my son started a new gym & swim class. This class had more kids than he was used to, but otherwise everything was the same as his last one (just a different day.) He has a 1:1 aide for this class, and he did poorly because there were too many kids and he just couldn't function. He was laying on the gym floor and grabbing people's things by the bleachers. He's been having behaviors since we left. 

 

I'm just feeling so discouraged and like I can't possibly do the right things for him given the options we have. Would it kill someone to just say something encouraging to me! "Hey, I noticed your son got invited to a birthday party because a kid actually wanted him there!" "Hey, your kid just explained density to me, good thing you have him in an environment where he can pay attention and learn!" "Hey, your kid was the only one in his group to move up to the next level in swimming!" NOPE. It's always "you suck, your kids going to fall on his face in 15 years because of your bad decisions." That's what it sounds like to me at least. 

 

Wow, I'm sorry I missed this yesterday. You've got a lot going on! And congratulations on moving up in the swim lessons!!   :party:  :party:

 

I agree, it's a BIG DEAL!!   :thumbup:  My ds was very slow to move through levels, so I had to sit there watching class after class as all the other kids passed and he didn't, session after session. Now he's on swim team and kicks butt, but there was a long time there where it was really kinda need the kleenex just to go to class, sigh. Btdt, very hard. No one wants your kid to struggle. 

 

Can we back up? What is his current diagnosis, how was that gotten, and how old are we talking? If you would fill in your sig, that would help. I know we've read your posts before and chatted, but I just cannot remember. Anyways, I'm assuming your darling is young. That's really over the top for a respite aide to be giving you a long-term prognosis. That's really something a psych should do. That's their job, not the job of an entry-level respite worker. That's a mildly trained babysitter. Or this person is an RBT? Like woo, big whoop, REALLY QUALIFIED there.   :smilielol5:

 

I've had SLPs offer their opinion on my ds' diagnoses. Actually I had a reading tutor tell me she wasn't sure his labels were correct. I had another SLP give me medical advice and tell me what prescriptions I should be on.  :scared:  Seriously, I've concluded the lower trained these people are, the more entitled they think they are to an opinion.  :smash:

 

And to think I have to see some of these idiots again!  :ohmy:  Gets really interesting and wearisome dealing with fools and people who take a class or two and feel free to work outside their qualifications.  :svengo:

 

Ok, that said, sure your ds might need a 1:1 aide in school. So what? Like really, does that mean he has horns and isn't a lovely person? Or does it mean that everyone on the team would be committed to getting all the intervention he needs to get where he's going? ALL that matters is that he is surrounded by people, people working together as a team (with apparently you, but maybe a behaviorist as the team leader) who are committed to making happen what is best for him.

 

Timetable doesn't matter, level of intervention doesn't matter. It's not like it's something to be ashamed of. What you should be ashamed of is ps settings where they WON'T provide the needed level of services for a dc to succeed. That's something for the ps to be ashamed of! But to have a dc need them? Big whoop, move on.

 

My kid has an IEP. It's ugly and thick and it says things you don't want a file to say. Oh well, move on. The point is to surround him with a team of people all working together and making happen what needs to happen. THAT is where you put your energy.

 

Does this worker have a boss/supervisor? If she does, I would tell the boss your worker was out of line so the boss can give her a friendly reminder. I know how hard aides are to find, so it's not like you can just willy nilly fire. But the supervisor could give her a little bit of instruction there.

 

What do you want to change? What do you want to make happen?

 

And did he get invited to a b-day party? That's awesome! Did he go yet? :)


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#5 OhElizabeth

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Posted 08 March 2017 - 10:36 AM

Hold it, are you the person we had talked with about moving? Was moving on the table? You mention a lack of resources where you are to make things happen.



#6 Plink

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Posted 08 March 2017 - 12:48 PM

A doctor recently suggested that enrolling my child in school would decrease her anxiety. I was so flabbergasted that I couldn't even respond coherently.

 

Logically, I knew the doc was 100% wrong, but it really did shake my confidence for a moment.  ((hugs))  It isn't easy to deal with negativity all the time.

 

I wish I could be more like my DH.  He often says, "Be the duck."  Let every unsolicited opinion roll off of you like water off a duck's back and just keep on swimming.  You know where you are going.  They don't.  

 

 


Edited by Plink, 08 March 2017 - 01:19 PM.

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#7 Moved On

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Posted 08 March 2017 - 01:22 PM

I would not report the respite provider. Sometimes people say the stupidest things that can hurt, but with good intentions.

Edited by Canadian Mom of 2, 08 March 2017 - 02:23 PM.

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#8 frogger

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Posted 08 March 2017 - 01:42 PM

I actually read a study where it said the less someone knows about a situation the more confident they are. My life experience tells me the study was probably correct. The more you know the more complicated things become.

I'm sorry. People are annoying.
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#9 Kinsa

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Posted 08 March 2017 - 02:52 PM

The day the neuropsych have us the report (which ultimately led to the diagnosis we were NOT expecting), I got a good reeming about homeschooling him, and about how I was going to handicap him for life, that I was doing him a complete disservice, that I couldn't POSSIBLY do what good special ed teachers could do, ad nauseum.

I cried. I doubted myself for a week or so.

Then I got really angry. How dare this lady who had spent a whopping three hours with my son assert that she knew best how to accommodate his educational needs? She didn't know me from Eve, and she didn't know what I was capable of.

So screw her. It's been... five?... years, and I'm still pissed about it. LoL
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#10 Hilltopmom

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Posted 08 March 2017 - 02:58 PM

The day the neuropsych have us the report (which ultimately led to the diagnosis we were NOT expecting), I got a good reeming about homeschooling him, and about how I was going to handicap him for life, that I was doing him a complete disservice, that I couldn't POSSIBLY do what good special ed teachers could do, ad nauseum.

I cried. I doubted myself for a week or so.

Then I got really angry. How dare this lady who had spent a whopping three hours with my son assert that she knew best how to accommodate his educational needs? She didn't know me from Eve, and she didn't know what I was capable of.

So screw her. It's been... five?... years, and I'm still pissed about it. LoL


Heck Kinsa, I "am" a certified special Ed teacher & doubt myself hourly about the decisions I'm making for my challenged kiddo.
I can't believe they used to pay me for this job, I've realized how clueless I actually am. I should go back in time & smack my 20 something self who used to give educational advice to parents. Really.
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#11 BooksandBoys

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Posted 08 March 2017 - 03:13 PM

Oh, OP, I'm SO EXCITED that your son moved up in swimming!!!

My son was incredibly slow to progress in swimming (and all physical activity), so I know how monumental that graduation is!

And a birthday party! Because he was wanted!!!! How wonderful!

When the (in training) woman who diagnosed my oldest with autism and adhd gave me her report, she harped on how important it was to put him in school so "he would have a chance." She wrote in her report that he would need services that "only the public schools can provide."

A chance at what? I was so angry I could have spit. In my district, the schools don't do a thing for the autism level 1 kids. And he was, by her own admission, well ahead of grade level in the areas in which he does not have disabilities. Our previous doctor also constantly bugged me to put him in school.

Every teacher who has ever met him has told me to keep him at home (and do as much therapy as we can, but they acknowledge that he would get no services at school, so we'd still be doing it privately), but the psychs and the doctors aren't the teachers. They don't know anything about what actually happens in school; they just need to have an opinion.
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#12 Moved On

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Posted 08 March 2017 - 03:19 PM

Mom of 2 boys, I just looked a bit back at your older posts and realized you have had similar issues with a respite worker in the past. I'm so sorry :grouphug: To need the help and have to deal with constant comments undermining what you are trying to do and your authority as a parent, must be very challenging!

Know, that people criticize what they don't understand. You will never agree with everyone and not everyone will always agree with you. Parenting is a *hot* topic when it comes to debates. Just because someone makes a choice for their child (or would make a certain choice in your shoes) that suits their child and family, it does not make it right for your child or family.

There are numerous people that have successfully homeschooled their special needs kids. There are others that have chosen to put their kids in school and it was the best decision for them. We the parents choose our life's path and what is best for our children and family. There's no right or wrong. Just decisions based on our own family values and needs. They are the right decisions for *us*, regardless of what others may think.

Edited by Canadian Mom of 2, 08 March 2017 - 03:22 PM.


#13 Moved On

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Posted 08 March 2017 - 03:36 PM

Deleted for privacy.  

 


Edited by Moved On, 18 August 2017 - 06:47 PM.


#14 mom of 2 boys

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Posted 08 March 2017 - 03:39 PM

Awe I am so sorry! Huge, enormous hugs. So many people think they know better and if you had just done x and such you wouldn't have these issues. It's bunk but trying to convince someone who hasn't been in your shoes can be a real uphill battle. In the meantime no one is really appreciating the hard work you and your child are putting into this process. And it stinks. It wears you down. It feels like an anvil on your chest and it is all on your shoulders. I wish I could give you a hug and some help in real life. You are doing whatever you can for your child. You are shouldering a huge burden and working hard. Whatever anyone else says, they can't take that away. Let them know you don't need criticism you need support. If they can't provide support their opinions are no longer needed. Again huge hugs.

 

Thank you! Today has not been much better, it's helpful to read your supportive comments! 


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#15 mom of 2 boys

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Posted 08 March 2017 - 03:57 PM

Wow, I'm sorry I missed this yesterday. You've got a lot going on! And congratulations on moving up in the swim lessons!!   :party:  :party:

 

I agree, it's a BIG DEAL!!   :thumbup:  My ds was very slow to move through levels, so I had to sit there watching class after class as all the other kids passed and he didn't, session after session. Now he's on swim team and kicks butt, but there was a long time there where it was really kinda need the kleenex just to go to class, sigh. Btdt, very hard. No one wants your kid to struggle. 

 

Can we back up? What is his current diagnosis, how was that gotten, and how old are we talking? If you would fill in your sig, that would help. I know we've read your posts before and chatted, but I just cannot remember. Anyways, I'm assuming your darling is young. That's really over the top for a respite aide to be giving you a long-term prognosis. That's really something a psych should do. That's their job, not the job of an entry-level respite worker. That's a mildly trained babysitter. Or this person is an RBT? Like woo, big whoop, REALLY QUALIFIED there.   :smilielol5:

 

I've had SLPs offer their opinion on my ds' diagnoses. Actually I had a reading tutor tell me she wasn't sure his labels were correct. I had another SLP give me medical advice and tell me what prescriptions I should be on.  :scared:  Seriously, I've concluded the lower trained these people are, the more entitled they think they are to an opinion.  :smash:

 

And to think I have to see some of these idiots again!  :ohmy:  Gets really interesting and wearisome dealing with fools and people who take a class or two and feel free to work outside their qualifications.  :svengo:

 

Ok, that said, sure your ds might need a 1:1 aide in school. So what? Like really, does that mean he has horns and isn't a lovely person? Or does it mean that everyone on the team would be committed to getting all the intervention he needs to get where he's going? ALL that matters is that he is surrounded by people, people working together as a team (with apparently you, but maybe a behaviorist as the team leader) who are committed to making happen what is best for him.

 

Timetable doesn't matter, level of intervention doesn't matter. It's not like it's something to be ashamed of. What you should be ashamed of is ps settings where they WON'T provide the needed level of services for a dc to succeed. That's something for the ps to be ashamed of! But to have a dc need them? Big whoop, move on.

 

My kid has an IEP. It's ugly and thick and it says things you don't want a file to say. Oh well, move on. The point is to surround him with a team of people all working together and making happen what needs to happen. THAT is where you put your energy.

 

Does this worker have a boss/supervisor? If she does, I would tell the boss your worker was out of line so the boss can give her a friendly reminder. I know how hard aides are to find, so it's not like you can just willy nilly fire. But the supervisor could give her a little bit of instruction there.

 

What do you want to change? What do you want to make happen?

 

And did he get invited to a b-day party? That's awesome! Did he go yet? :)

 

Thank you!! Yeah, I should fill in my signature, that would probably be helpful! I'm the one who has a 2 and a 5 year old who both have autism, my toddler also has speech apraxia. 

 

She's not from an agency, I hired her privately and I get reimbursed. Honestly, I can't even imagine going through this whole stupid respite process again, I don't even know if it's helping me. I'm setting up snacks and cleaning the house (to a non-embarrassing level) and making sure there's clean pants in my kids drawers, and then coming home to fix whatever problems came up while I was out. It's a lot of effort just to run a few errands in peace. I guess the change of pace helps to an extent. 

 

And yes, I am the one that is trying to move. Of course after we started getting really serious about the idea my husband tells me that he's up for a promotion where we live now. He says it's really important for his career and he just needs a couple more years here. I have a suspicion that in a couple of years, he will just need a couple more years, and I'm just going to lose my mind in the process. 



#16 mom of 2 boys

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Posted 08 March 2017 - 04:01 PM

I actually read a study where it said the less someone knows about a situation the more confident they are. My life experience tells me the study was probably correct. The more you know the more complicated things become.

I'm sorry. People are annoying.

 

Yeah, that definitely seems to be the case in my experience as well. I don't think I know one person who has a child with a disability, yet everyone I meet seems to think they're an expert.  


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#17 mom of 2 boys

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Posted 08 March 2017 - 04:06 PM

The day the neuropsych have us the report (which ultimately led to the diagnosis we were NOT expecting), I got a good reeming about homeschooling him, and about how I was going to handicap him for life, that I was doing him a complete disservice, that I couldn't POSSIBLY do what good special ed teachers could do, ad nauseum.

I cried. I doubted myself for a week or so.

Then I got really angry. How dare this lady who had spent a whopping three hours with my son assert that she knew best how to accommodate his educational needs? She didn't know me from Eve, and she didn't know what I was capable of.

So screw her. It's been... five?... years, and I'm still pissed about it. LoL

 

Lol I hear you! I had a similar experience last year when my son had some kind of "transition" meeting where we were supposed to sit down and talk about moving up to Kindergarten. I naively thought that these people were going to be able to give me some useful advice about the level of support he would need while doing homeschool classes. LOL that was eye opening. Long story short, they were so disrespectful that they sent home an apology letter the next day. At least they did that much, but it certainly didn't erase their "concerns" from my mind. That was my lovely send off to the homeschooling world! 


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#18 mom of 2 boys

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Posted 08 March 2017 - 04:21 PM

Heck Kinsa, I "am" a certified special Ed teacher & doubt myself hourly about the decisions I'm making for my challenged kiddo.
I can't believe they used to pay me for this job, I've realized how clueless I actually am. I should go back in time & smack my 20 something self who used to give educational advice to parents. Really.

 

This makes me feel a lot better! I wish everyone in these fields would be as humble as you. I wish these people we're dealing with would just admit that this is hard. It's hard for everyone, and they don't have all the answers. 


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#19 mom of 2 boys

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Posted 08 March 2017 - 04:34 PM

Oh, OP, I'm SO EXCITED that your son moved up in swimming!!!

My son was incredibly slow to progress in swimming (and all physical activity), so I know how monumental that graduation is!

And a birthday party! Because he was wanted!!!! How wonderful!

When the (in training) woman who diagnosed my oldest with autism and adhd gave me her report, she harped on how important it was to put him in school so "he would have a chance." She wrote in her report that he would need services that "only the public schools can provide."

A chance at what? I was so angry I could have spit. In my district, the schools don't do a thing for the autism level 1 kids. And he was, by her own admission, well ahead of grade level in the areas in which he does not have disabilities. Our previous doctor also constantly bugged me to put him in school.

Every teacher who has ever met him has told me to keep him at home (and do as much therapy as we can, but they acknowledge that he would get no services at school, so we'd still be doing it privately), but the psychs and the doctors aren't the teachers. They don't know anything about what actually happens in school; they just need to have an opinion.

 

Thank you so much!!! I think that most of these professionals are living in a dream world. I would love to see just one of them balance their idealistic ideas of socialization in school with the reality of bullying. 


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#20 mom of 2 boys

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Posted 08 March 2017 - 04:42 PM

Mom of 2 boys, I just looked a bit back at your older posts and realized you have had similar issues with a respite worker in the past. I'm so sorry :grouphug: To need the help and have to deal with constant comments undermining what you are trying to do and your authority as a parent, must be very challenging!

Know, that people criticize what they don't understand. You will never agree with everyone and not everyone will always agree with you. Parenting is a *hot* topic when it comes to debates. Just because someone makes a choice for their child (or would make a certain choice in your shoes) that suits their child and family, it does not make it right for your child or family.

There are numerous people that have successfully homeschooled their special needs kids. There are others that have chosen to put their kids in school and it was the best decision for them. We the parents choose our life's path and what is best for our children and family. There's no right or wrong. Just decisions based on our own family values and needs. They are the right decisions for *us*, regardless of what others may think.

 

Thank you for your support, and thank you for taking the time to dig deeper into my other stuff! Yes, our last respite provider was a lot worse. Honestly, I'm still trying to recover from having her around. 


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#21 Moved On

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Posted 08 March 2017 - 04:46 PM

Thank you so much!!! I think that most of these professionals are living in a dream world. I would love to see just one of them balance their idealistic ideas of socialization in school with the reality of bullying.


Remember, just because they may be experts in their field, it does not mean they are immune from personal bias. None of us are. It's a part of being human :)
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#22 Moved On

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Posted 08 March 2017 - 04:49 PM

Thank you for your support, and thank you for taking the time to dig deeper into my other stuff! Yes, our last respite provider was a lot worse. Honestly, I'm still trying to recover from having her around.


I'm so sorry :grouphug: You could set some ground rules, in writing, for the new one. It won't solve the problem but it might make her more careful with her comments. You will at least be clarifying what you are not prepared to put up with.

Edited by Canadian Mom of 2, 08 March 2017 - 04:50 PM.

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#23 OhElizabeth

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Posted 09 March 2017 - 02:10 AM

A doctor recently suggested that enrolling my child in school would decrease her anxiety. I was so flabbergasted that I couldn't even respond coherently.

 

Logically, I knew the doc was 100% wrong, but it really did shake my confidence for a moment.  ((hugs))  It isn't easy to deal with negativity all the time.

 

I wish I could be more like my DH.  He often says, "Be the duck."  Let every unsolicited opinion roll off of you like water off a duck's back and just keep on swimming.  You know where you are going.  They don't.  

 

I know it's a total aside, but there's actually something *to* what he was saying. There are specific things they do in a school situation for anxiety, everything from intervention for social thinking (5 Point Scale, size of the problem, calming techniques, etc.) to increasing structure, providing aides, visual schedules, etc. etc. Even though the ped was offensive in how he put it, you might want to slow down and see what he really meant and what good you could glean from it, what changes you could make, what he's seeing that he knows the schools do for other kids that could help your kid.



#24 OhElizabeth

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Posted 09 March 2017 - 02:20 AM

She didn't know me from Eve, and she didn't know what I was capable of.
 

I had a similar experience, sigh. Really rattled me too. I think the reality is that *most* homeschooling parents are NOT going to workshops, using therapy materials, etc. etc. We are the EXCEPTION to the norm, not the norm. So I think that's what is pivotal, to look at yourself honestly, assess what you're REALLY going to do and make happen, and then do it.

 

The more I thought about our psych's imprecatory statements, the more I realized that what he meant was that there are serious consequences to failing, that he's seen a lot of parents NOT getting it done, NOT being willing to do the hard things, and that if I wasn't getting it done I needed to self-assess and get help. That's how *I* concluded it in my own soul. 


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#25 OhElizabeth

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Posted 09 March 2017 - 02:22 AM

Heck Kinsa, I "am" a certified special Ed teacher & doubt myself hourly about the decisions I'm making for my challenged kiddo.
I can't believe they used to pay me for this job, I've realized how clueless I actually am. I should go back in time & smack my 20 something self who used to give educational advice to parents. Really.

 

You want fun? One of my workers is studying for to be an intervention specialist. Now she's sweet, but I get SO frustrated when she gets a little uppity thinking that her hotshot whatever course makes me more knowledgeable than me. Like chick, I was teaching a kid to read when you were in diapers. So it's fun. I give her leash and try to hear her new ideas, then I snap her back to reality, lol.


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#26 OhElizabeth

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Posted 09 March 2017 - 02:24 AM

Then dump respite and get ABA.



#27 Moved On

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Posted 09 March 2017 - 02:52 AM

There are many many resources and books to read, besides workshops that promote therapy materials. We don't all have to go the same route to help our kids, nor is *one* route the *only* right way. The best strategies are those that start with the child not the label.
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#28 Kinsa

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Posted 09 March 2017 - 11:00 AM

The best strategies are those that start with the child not the label.


Amen and amen!
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#29 MerryAtHope

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Posted 09 March 2017 - 04:34 PM

"Hey, I noticed your son got invited to a birthday party because a kid actually wanted him there!" "Hey, your kid just explained density to me, good thing you have him in an environment where he can pay attention and learn!" "Hey, your kid was the only one in his group to move up to the next level in swimming!" 

 

WOW! These are amazing accomplishments, worth celebrating! I'm so glad for you and your son. It's hard in the trenches (and harder when others don't notice--and then harder still when they bulldoze what you are doing with opposite recommendations without seeing the good progress). ((((Hugs)))) to you. Sometimes we don't get to see real progress for years, but you are giving your son an amazing gift by homeschooling, and your sacrifices are worth it. Maybe keep a journal of both little and big successes that you can read in times of doubt and discouragement. 


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#30 mom of 2 boys

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Posted 09 March 2017 - 05:37 PM

Then dump respite and get ABA.

 

We don't have ABA here. I can bring him up to the local elementary school for 6 half hour sessions of PT/OT/Speech per week, and that's about it. Last time he was in "school therapy" he refused to participate and they didn't know what to do with him. 



#31 mom of 2 boys

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Posted 09 March 2017 - 05:38 PM

WOW! These are amazing accomplishments, worth celebrating! I'm so glad for you and your son. It's hard in the trenches (and harder when others don't notice--and then harder still when they bulldoze what you are doing with opposite recommendations without seeing the good progress). ((((Hugs)))) to you. Sometimes we don't get to see real progress for years, but you are giving your son an amazing gift by homeschooling, and your sacrifices are worth it. Maybe keep a journal of both little and big successes that you can read in times of doubt and discouragement. 

 

Thank you!! I think that is a great idea, it is so easy to lose sight of the accomplishments in the midst of discouragement. 


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#32 Plink

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Posted 09 March 2017 - 05:45 PM

I know it's a total aside, but there's actually something *to* what he was saying. There are specific things they do in a school situation for anxiety, everything from intervention for social thinking (5 Point Scale, size of the problem, calming techniques, etc.) to increasing structure, providing aides, visual schedules, etc. etc. Even though the ped was offensive in how he put it, you might want to slow down and see what he really meant and what good you could glean from it, what changes you could make, what he's seeing that he knows the schools do for other kids that could help your kid.

I really wish you were right and the ped had thought it through and had logical reasons for suggesting why the school could help.  Nope.  Just a random off the cuff suggestion.  He knows this child receives those same services already.


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#33 OhElizabeth

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Posted 09 March 2017 - 08:42 PM

We don't have ABA here. I can bring him up to the local elementary school for 6 half hour sessions of PT/OT/Speech per week, and that's about it. Last time he was in "school therapy" he refused to participate and they didn't know what to do with him. 

 

Privately even? Like nobody nowhere?? Through EI??? A children's hospital??  Sigh. This doesn't make sense to me. If they have an IEP (which they can starting at 3 or 4, yes?) and the disabling condition is listed as autism, what do the kids do? Doesn't the school have an autism program or somewhere they bus the kids??



#34 mom of 2 boys

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Posted 09 March 2017 - 10:25 PM

Privately even? Like nobody nowhere?? Through EI??? A children's hospital??  Sigh. This doesn't make sense to me. If they have an IEP (which they can starting at 3 or 4, yes?) and the disabling condition is listed as autism, what do the kids do? Doesn't the school have an autism program or somewhere they bus the kids??

 

The kids are placed in inclusion classrooms, and if they cannot handle that, they are given aide support, and if that is not enough, they are then sent to a BOCES classroom that is located in a public school and uses the TEACCH model. 


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#35 OneStepAtATime

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Posted 09 March 2017 - 11:37 PM

I know it's a total aside, but there's actually something *to* what he was saying. There are specific things they do in a school situation for anxiety, everything from intervention for social thinking (5 Point Scale, size of the problem, calming techniques, etc.) to increasing structure, providing aides, visual schedules, etc. etc. Even though the ped was offensive in how he put it, you might want to slow down and see what he really meant and what good you could glean from it, what changes you could make, what he's seeing that he knows the schools do for other kids that could help your kid.

 

 

Then dump respite and get ABA.

 

 

Privately even? Like nobody nowhere?? Through EI??? A children's hospital??  Sigh. This doesn't make sense to me. If they have an IEP (which they can starting at 3 or 4, yes?) and the disabling condition is listed as autism, what do the kids do? Doesn't the school have an autism program or somewhere they bus the kids??

OhE, there are a lot of places where the school system does not have the same supports in place that you are describing.  I wish with all my heart that it weren't true but it is.  

 

My SIL had to start a program for autistic students from absolute zero because it didn't exist here and they had no idea what to do.  She did some research and started it with NO training and NO backup and ZERO experience working with autistic kids.  Why did they put her with this task?  She was pretty new and she was given little choice.  Thankfully she took it seriously.  Eventually, through a lot of trial and error and a tremendous amount of work, she got a program going that was extremely helpful.  Parents moved from other districts to get their kids in.  And then budget cuts hit and the school system shut it down.  They shut it down.  It doesn't exist here anymore.  She moved to a charter school system in anther district and started again but there is nothing here.  Kids get an aid periodically but really the schools don't know what to do and have no training to do it.

 

One of DD's former classmates has profound dysgraphia among other things.  His IEP/504 nets him very little.  When he couldn't finish his work on time in class and most of it was illegible his teacher kept calling him on the carpet for poor effort.  He eventually crumbled and refused to try anymore.  He was so demoralized his hands would shake when he had to pick up a pencil.  He was sent to the principal's office and kept there after school writing his assignment.  No one called his mom.  She had no idea.  She finally went to the school to find him.

 

The principal of the local elementary school has stated flat out that she doesn't believe that dyslexia/dysgrahia/dyscalculia/ADHD exist.  That these things are caused by lazy, indulgent parents encouraging their children to be lazy and indulgent, too.  She treats her students with special issues accordingly.

 

Actually, the situation is so bad in our area that there have been lawsuits filed against the school district.  

 

I know that there are a lot of school systems that offer quite a bit.  I know because I have read about it from certain people on these boards.  I definitely have not seen those examples in person.  When professionals make statements indicating that school would be the better option around here they are saying it not because they actually KNOW the schools here have great programs (they don't).  They say it because of the blind assumption that a parent is incapable of teaching.  

 

OP, I'm sorry you are faced with such difficult circumstances.  Sending more hugs and hope.


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#36 Moved On

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Posted 10 March 2017 - 04:07 AM

OneStepAtATime, that makes me so sad :( It's disheartening to hear.
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#37 OneStepAtATime

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Posted 10 March 2017 - 12:37 PM

OneStepAtATime, that makes me so sad :( It's disheartening to hear.

Honestly, it isn't that the school system is full of evil people.  I feel bad trashing our school system.  My kids had some really cool teachers (with a couple of frighteningly bad exceptions).  They just had zero training or background knowledge in how to deal with or even recognize kids that might have learning challenges/2e kids and there is NO support from administrative levels.  



#38 Moved On

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Posted 10 March 2017 - 12:50 PM

I didn't get the impression that anyone was evil but it's still sad to hear what some kids have to deal with, regardless of whom or what is at fault. These scars may follow most of them for life :(

Edited by Canadian Mom of 2, 10 March 2017 - 12:51 PM.

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#39 OneStepAtATime

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Posted 10 March 2017 - 12:53 PM

I didn't get the impression that anyone was evil but it's still sad to hear what some kids have to deal with, regardless of whom or what is at fault. These scars may follow most of them for life :(


Yeah, DS has never really recovered.

#40 Moved On

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Posted 10 March 2017 - 01:02 PM

:(  I'm so sorry!


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#41 frogger

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Posted 10 March 2017 - 06:50 PM

I'm so sorry One Step. :(
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#42 kbutton

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Posted 11 March 2017 - 07:38 PM

Privately even? Like nobody nowhere?? Through EI??? A children's hospital??  Sigh. This doesn't make sense to me. If they have an IEP (which they can starting at 3 or 4, yes?) and the disabling condition is listed as autism, what do the kids do? Doesn't the school have an autism program or somewhere they bus the kids??

E, there are places that are very rural, and the nearest children's hospital is hours and hours away. Where my folks live, their nearest "children's" hospital is a section of a regular (but excellent) hospital two hours away. The entire hospital is tiny by national standards (but mighty). To get to a hospital like what you are thinking is a 4 hour or more drive. Everyone relies on local people in their field to take the initiative to get training. Thankfully, a lot of local resources know they are holding their finger in the dyke and are willing to do this, but they might be prioritizing based on their actual patient load. They might be taking a class or doing a workshop for just one or two kids who need that information!   

 

The kids are placed in inclusion classrooms, and if they cannot handle that, they are given aide support, and if that is not enough, they are then sent to a BOCES classroom that is located in a public school and uses the TEACCH model. 

 

I am sorry you don't have more resources locally. I am really glad to hear about your son's exciting milestones.

 

I am sorry the respite care is not as much help as you'd like. I think it's good you have it--if you had a specific emergency at some point, it's probably better than nothing, but I know it's hard to feel like there are as many problems with it as solutions. I hope the situation matures and turns into something more real and lasting for you.

 

:grouphug:



#43 Moved On

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Posted 12 March 2017 - 07:00 PM

Then dump respite and get ABA.

This link is not intended to pick on anyone or to start a debate. I respect everyone's right to make these decisions for their own children. However, I am also a big supporter of knowing both sides of a story, knowing both sides of the argument if you will, so that better informed decisions can be made. The author does not take sides; as it should be! Decisions on things like this are individual to each family and, I believe, should be respected.

The controversy over autism’s most common therapy
https://spectrumnews...common-therapy/

Edited by Canadian Mom of 2, 12 March 2017 - 07:04 PM.