Re: Non-verbal child

[Guest guest]

Please, call his teachers....he probably understands so much more than you might

think. That is certainly the case with our daughter. I also have a friend or

relative or grandparent come in for an hour or two a day simply because it makes

me a better parent to get a little break but also because they play and engage

differently than I do.

I know it seems hard to keep our children entertained , engaged and included but

they enjoy learning so much. When my daughter, also nonverbal and non mobile,

wants to be up and going I will put her in a chair (I have 4 or 5 different

types just to mix it up) and give her a bowl and spoons when I cook, so she can

stir and feel part of an activity; or I give her matching type memory games with

cards...it's ok if they all end up on the floor...talk to your son a lot. I also

do lots of store trips because sitting in the grocery cart is great PT.

If is like my daughter he likes to watch everything happening around

him, ie. he is really observant, that's great....take him to places he can

observe and then talk about everything you see.

It is so hard to see our little ones frustrated and that's what it is..If I can

help to think outside the box let me know..I am happy to talk directly. One

final thought: is getting therapy while school is out? If so, any chance

you can increase it or possibly hire an SI (SEIT) privately for the last few

weeks of summer?

I'm in CT and NYC do you live close....play date?

Karla

Sent from my iPad

> Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

>

> Stacey

>

> http://lifeonmysterylane.blogspot.com/

>

>

[Guest guest]

Sadly, Our kids do get bored since some can't do for themselves.  I would

assume understands more than you think.  Can't you find a summer camp

or school for him to attend?  Or contact Mental Health Mental Retardation

agency, get a case manager, and request some respite funding. They will find

someone qualified to take your son out to do activities.  Services vary from

state to state.  Often times they hire CNAs or a college student studing

special education to do the activities.  They aren't so stressed and warn out

like parents so the kids get to de-stress too.

I hope you can find some help since it is so draining.

God Bless You and your family.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Thursday, July 26, 2012 11:15 PM

Subject: Non-verbal child

 

Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

 

Stacey

http://lifeonmysterylane.blogspot.com/

[Guest guest]

Hi Stacey, Im sorry to hear youre having such a ruff patch.  Our son Josh is 10

with PMG, non-verbal.  I can remember going through a similar experience with

Josh around kindergarten, and about once a year since.  He would through the

same sort of fits of crying and screaming and being so miserable.  it can be

heart-wrenching and exhausting, but just the fact that you are reaching out

shows what a great mom you are.  With josh the first time, after weeks we

discovered he had a nasty hidden cavity.  He had to have the tooth pulled and

he quickly recovered.  Like all kids, sometimes they just don't understand why

you cant ALWAYS make them better, when every other time you do make them

better. 

Frustration with the realization of having a severe disability was another huge

obstacle we spent a long time struggling with.  By " we " , I mean, our son Josh

and our family watching him become so self-aware of his handicap.  He needs

time to grieve also.  We now realize our son is MUCH much more aware of these

types of things than we ever gave him credit for.  By any standard he is

cognitively damaged, but in so many ways, he is constantly aware and learning

and emotionally mature, evolved even.  Especially emotionally.  I bet your son

will grow emotionally even beyond his 'typical' peers, as ours did.

   You probably are correct in him being bored and frustrated.  When Josh got

to the extreme, i often took him in a semi-dark warm bath and let him play with

glow sticks, and this would 99% of the time chill him out.  And me too!  But

definitely still to go through a list of possibly pain factors, teeth, growing,

ingrown nail, etc...possible fractures (Josh fractured his hip at 7, we had NO

idea for weeks!)  

Hang in there!

V

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Thursday, July 26, 2012 8:15 PM

Subject: Non-verbal child

 

Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

 

Stacey

http://lifeonmysterylane.blogspot.com/

[Guest guest]

Have you been rewarding him for good behaviot? Take pictures of things he likes,

things you want him do, pictures when he is behaving appropriately. Make a card

make a strip showing what you desire behavior wise First/ Then board showing

desired behavior and then what he would like to earn.

Non-verbal child

Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

Stacey

http://lifeonmysterylane.blogspot.com/

[Guest guest]

Thanks to everyone for their thoughts.  does have his therapies during

the summer and we do get respite care (I think I need to leave the house more

though when she is here).  We live in Spokane, WA and I have looked hard for

any type of camp, summer school program and preschool that would take a kid like

but there just isn't one.  For a while I did think his screaming fits

were something medical but we just got home from 8 days of a road trip to

Yellowstone and the Grand Tetons and only had about 1 hour of fit

throwing in all of those 8 days.  About a 1/2 hour was because he was hungry

and the other 1/2 hour was because he was overtired and couldn't sleep.  Other

than those two incidents he was the happiest I have seen him in months.  So I

know it isn't anything medical. Also his screams have different sounds to them

so I can usually tell if it is a pain scream or a fit scream. 

 

I came across an article tonight that was about the ADHD brain and discipline

that I think may have some relation to what is going through.  Although

he doesn't have ADHD it talked about how the limbic system control the behaviors

and reactions of children until the frontal lobe " wakes us " and begins to

moderate things.  For example, when a baby screams for a new diaper or because

he is bored that is the limbic system responding to a problem.  The limbic

system cannot match the intensity of the reaction to the size of the problem. 

So until the frontal lobe kicks in to manage the reaction children will just

scream.  I need to do more research on this but it sounds like what may be

going on with in a way.  I plan to call his neurologist this week to

discuss it.  , when he is throwing his fits, just gets more and more

worked up as time goes on.  If his frontal lobe is not working properly this

would explain the intensity of

the fits. 

 

Anyway I will try rewarding his good behavior and see if that works.  He did

pretty good today and tomorrow we are going out on my sister's sailboat and he

always loves that.  It is just so frustrating to me when he has his fits and it

just wears me down.  It is comforting to know I am not the only one going

through this, although at times that is how it feels.  Thanks everyone!

 

Stacey 

http://lifeonmysterylane.blogspot.com/

________________________________

To: polymicrogyria

Sent: Friday, July 27, 2012 10:39 PM

Subject: RE: Non-verbal child

 

Have you been rewarding him for good behaviot? Take pictures of things he likes,

things you want him do, pictures when he is behaving appropriately. Make a card

make a strip showing what you desire behavior wise First/ Then board showing

desired behavior and then what he would like to earn.

Non-verbal child

Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

Stacey

http://lifeonmysterylane.blogspot.com/

[Guest guest]

This is an article from another group and it may be helpful to understand

sensory processing. I don't know if it pertains to but I know we deal

with some looks to be unreasonable meltdowns.

http://www.spdsupport.org/articles/4-spd-meltdown-how-does-it-feel.shtml

To: polymicrogyria

From: stacey_rut@...

Date: Thu, 26 Jul 2012 20:15:39 -0700

Subject: Non-verbal child

Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

Stacey

http://lifeonmysterylane.blogspot.com/

[Guest guest]

I feel your pain when you say it wears you down.  We can't be entertaining our

kids 24/7 yet special needs kids are hard to discipline.  I wish you all the

best.

________________________________

To: " polymicrogyria " <polymicrogyria >

Sent: Sunday, July 29, 2012 12:46 AM

Subject: Re: Non-verbal child

 

Thanks to everyone for their thoughts.  does have his therapies during

the summer and we do get respite care (I think I need to leave the house more

though when she is here).  We live in Spokane, WA and I have looked hard for

any type of camp, summer school program and preschool that would take a kid like

but there just isn't one.  For a while I did think his screaming fits

were something medical but we just got home from 8 days of a road trip to

Yellowstone and the Grand Tetons and only had about 1 hour of fit

throwing in all of those 8 days.  About a 1/2 hour was because he was hungry

and the other 1/2 hour was because he was overtired and couldn't sleep.  Other

than those two incidents he was the happiest I have seen him in months.  So I

know it isn't anything medical. Also his screams have different sounds to them

so I can usually tell if it is a pain scream or a fit scream. 

 

I came across an article tonight that was about the ADHD brain and discipline

that I think may have some relation to what is going through.  Although

he doesn't have ADHD it talked about how the limbic system control the behaviors

and reactions of children until the frontal lobe " wakes us " and begins to

moderate things.  For example, when a baby screams for a new diaper or because

he is bored that is the limbic system responding to a problem.  The limbic

system cannot match the intensity of the reaction to the size of the problem. 

So until the frontal lobe kicks in to manage the reaction children will just

scream.  I need to do more research on this but it sounds like what may be

going on with in a way.  I plan to call his neurologist this week to

discuss it.  , when he is throwing his fits, just gets more and more

worked up as time goes on.  If his frontal lobe is not working properly this

would explain the intensity of

the fits. 

 

Anyway I will try rewarding his good behavior and see if that works.  He did

pretty good today and tomorrow we are going out on my sister's sailboat and he

always loves that.  It is just so frustrating to me when he has his fits and it

just wears me down.  It is comforting to know I am not the only one going

through this, although at times that is how it feels.  Thanks everyone!

 

Stacey 

http://lifeonmysterylane.blogspot.com/

________________________________

From: p lockard <mailto:pattylockard%40hotmail.com>

To: mailto:polymicrogyria%40yahoogroups.com

Sent: Friday, July 27, 2012 10:39 PM

Subject: RE: Non-verbal child

 

Have you been rewarding him for good behaviot? Take pictures of things he likes,

things you want him do, pictures when he is behaving appropriately. Make a card

make a strip showing what you desire behavior wise First/ Then board showing

desired behavior and then what he would like to earn.

Non-verbal child

Our son is 4 years old and has unilateral polymicrogyria. He is

non-verbal and non-mobile. He goes to a special ed preschool at the local

elementary school and absolutely loves it. Since he's been out of school we have

had a lot of bad days. I know he misses school and I think he is bored but since

he can't tell me what he wants (and I don't always know) he just screams and

yells. Basically he is throwing fit after fit. I'm at my wits end with my kid. I

try to keep him busy but can't do it every free second. I don't know how to

discipline him when he throws these fits. Right now all I do is telling him " it

is not okay to throw a fit " and put him in his bed until he calms down. I'm just

wondering if anyone else out there has had this problem and if so what they did.

I think understands some stuff but not everything. I am just not sure

where his comprehension is at which also makes it difficult. Any advice would be

appreciated.

Stacey

http://lifeonmysterylane.blogspot.com/