Re: Need Some Advice Please, Adolescent Issues

[Guest guest]

Hi Ronna,

First, it's important for you to know that, despite the extra complications, he

needs to go thru the awful teen angst we all survive. It's part of growing up,

learning where the boundaries are from running into them. Sometimes repeatedly.

Often painfully. In this circumstance, the boundaries also include crashing into

other people's preconceived notions about the disabled. Assuming severe

cognitive impairment when all they see is a wheelchair.

Looking back, the most difficult thing my parents did was step back and let me

figure it out. It was also the most empowering part of adolescence.

It might be good to address this sideways rather than head-on. Instead of

figuring out how to make this easier (because, honestly, nothing will) focus

your energy on his interests and getting access to those things. Does he like

writing? Math? Sports? Are there any school clubs he'd like? Chess? Fantasy

football? Whatever it is, encourage him to do what he can within reason. You

might even find a localMeetUp group where he can practice social skills with

people that already share an interest.

As far as dating. Women are more willing to look past difficulties than men.

Still, having a good job and stable income makes a difference. Pick a career

with financial base. In the meantime, just talking to girls can be difficult. I

recommend, " Hi, I'm . If you need help with geometry, I'm really good at

it. " Have something to contribute that others value, they'll figure it out

sooner or later.

People will always treat him differently until they get to know the guy he is

instead of the chair he sits in. But he'll have to do a lot of hard work to get

past what they see.

As a parent, don't let him get away with bad behavior just because he's had a

rough day. Everybody has rough days, sometimes lasting months. But you're not

helping if normal bratty behavior has no consequence.

Hope some of this helps,

S

>

>

> I am the Mom of a 16 year old young man with SMA 1 who is struggling with alot

of adolescent issues. Things were magnified because of a significant respiratory

infection in Feb 2012 that left him trach and vent dependent after a 3 month

hospitalization. He had always been in school until this past year, when he did

an online High School due to the need to get all caregivers thoroughly trained

on vent, and for him to regain his strength. He is venturing back into school

this year. He will be in 10th grade.

>

>

> It has not been easy for him to cultivate friendships in our smaller

community, although he has had a few very good friends over the years. He is

very interested in dating, and does not even know how to begin to break down

those barriers....He also is looking ahead to after graduation and wants to seek

out college opportunities away from home.

>

> I am looking for people who are on the other side of this nightmare of

adolescence that could share some wisdom about the ups and downs of surviving

adolescence as a wheelchair bound vent dependent individual with SMA. Also

wanting help as to how as a parent to support this process towards relationship

building and preparing for independence. I'd love to know from you what in your

opinion was helpful, and what to avoid at all costs!

>

> I am encouraging him to join this group, but he has not yet done so. His name

is and his email is brandon.jjohnson95@... if anyone is so inclined to

reach out to him.

>

>

> Thanks for any advice with these issues...

>

>

> Ronna

>

>

>

[Guest guest]

Thank you for your thoughtful response. I appreciate it! He is the youngest of

my my five kids and I agree teen angst is unavoidable, none of my other kids had

the physical challenges but they had many other struggles. I am trying to

encourage his artisitc abilities, he is an amazing artist and poet, and loved to

sing before the ventilator and a voice change! I appreciate your wisdom, I will

try to follow the advice you have given and continue to encourage him to join

this group!

Ronna

Re: Need Some Advice Please, Adolescent Issues

Hi Ronna,

First, it's important for you to know that, despite the extra complications, he

needs to go thru the awful teen angst we all survive. It's part of growing up,

learning where the boundaries are from running into them. Sometimes repeatedly.

Often painfully. In this circumstance, the boundaries also include crashing into

other people's preconceived notions about the disabled. Assuming severe

cognitive impairment when all they see is a wheelchair.

Looking back, the most difficult thing my parents did was step back and let me

figure it out. It was also the most empowering part of adolescence.

It might be good to address this sideways rather than head-on. Instead of

figuring out how to make this easier (because, honestly, nothing will) focus

your energy on his interests and getting access to those things. Does he like

writing? Math? Sports? Are there any school clubs he'd like? Chess? Fantasy

football? Whatever it is, encourage him to do what he can within reason. You

might even find a localMeetUp group where he can practice social skills with

people that already share an interest.

As far as dating. Women are more willing to look past difficulties than men.

Still, having a good job and stable income makes a difference. Pick a career

with financial base. In the meantime, just talking to girls can be difficult. I

recommend, " Hi, I'm . If you need help with geometry, I'm really good at

it. " Have something to contribute that others value, they'll figure it out

sooner or later.

People will always treat him differently until they get to know the guy he is

instead of the chair he sits in. But he'll have to do a lot of hard work to get

past what they see.

As a parent, don't let him get away with bad behavior just because he's had a

rough day. Everybody has rough days, sometimes lasting months. But you're not

helping if normal bratty behavior has no consequence.

Hope some of this helps,

S

>

>

> I am the Mom of a 16 year old young man with SMA 1 who is struggling with alot

of adolescent issues. Things were magnified because of a significant respiratory

infection in Feb 2012 that left him trach and vent dependent after a 3 month

hospitalization. He had always been in school until this past year, when he did

an online High School due to the need to get all caregivers thoroughly trained

on vent, and for him to regain his strength. He is venturing back into school

this year. He will be in 10th grade.

>

>

> It has not been easy for him to cultivate friendships in our smaller

community, although he has had a few very good friends over the years. He is

very interested in dating, and does not even know how to begin to break down

those barriers....He also is looking ahead to after graduation and wants to seek

out college opportunities away from home.

>

> I am looking for people who are on the other side of this nightmare of

adolescence that could share some wisdom about the ups and downs of surviving

adolescence as a wheelchair bound vent dependent individual with SMA. Also

wanting help as to how as a parent to support this process towards relationship

building and preparing for independence. I'd love to know from you what in your

opinion was helpful, and what to avoid at all costs!

>

> I am encouraging him to join this group, but he has not yet done so. His name

is and his email is brandon.jjohnson95@... if anyone is so inclined to

reach out to him.

>

>

> Thanks for any advice with these issues...

>

>

> Ronna

>

>

>

[Guest guest]

If he's excited about writing poetry, find a local place that offers open mike

night or poetry jam. I know you said you live in a small community but there's

always tiny little pockets of artists carving out a space to express themselves.

Go to your local university, the english department will know where the poets

hang out to share new material. Maybe a friend can read for him if he's

self-conscious about his voice, at least at first. Check out Marty McConnell,

Shane Koyczan and Janette Ikz on youtube, I'm a fan of poetry and they voice

some powerful truths. But he's the only one who can voice *his* truth.

And keep pushing him. Even when he pushes back. Especially when he pushes back.

One thing. This may or may not be the group for him. I've found some really good

ideas and support here, even if I don't post a lot. That said, my primary

interests are far from my disability and, socially, I spend the majority of my

time invested in very different things. It might be that this group is what

*you* need, not him.

-Susie

> >

> >

> > I am the Mom of a 16 year old young man with SMA 1 who is struggling with

alot of adolescent issues. Things were magnified because of a significant

respiratory infection in Feb 2012 that left him trach and vent dependent after a

3 month hospitalization. He had always been in school until this past year, when

he did an online High School due to the need to get all caregivers thoroughly

trained on vent, and for him to regain his strength. He is venturing back into

school this year. He will be in 10th grade.

> >

> >

> > It has not been easy for him to cultivate friendships in our smaller

community, although he has had a few very good friends over the years. He is

very interested in dating, and does not even know how to begin to break down

those barriers....He also is looking ahead to after graduation and wants to seek

out college opportunities away from home.

> >

> > I am looking for people who are on the other side of this nightmare of

adolescence that could share some wisdom about the ups and downs of surviving

adolescence as a wheelchair bound vent dependent individual with SMA. Also

wanting help as to how as a parent to support this process towards relationship

building and preparing for independence. I'd love to know from you what in your

opinion was helpful, and what to avoid at all costs!

> >

> > I am encouraging him to join this group, but he has not yet done so. His

name is and his email is brandon.jjohnson95@ if anyone is so inclined to

reach out to him.

> >

> >

> > Thanks for any advice with these issues...

> >

> >

> > Ronna

> >

> >

> >

[Guest guest]

Dear Ronna,

I've been almost exclusively a reader on this site, and I was very touched by

your post. I helped raise an amazing young man with SMA 2 who was a writer, poet

and artist. You can read about him on the web by googling Victor Alvarez

Mc. From the time I met him at age 10 until he died at age 24, he was

determined to get up each day and do something to make whatever situation he was

in better. There are two books about Victor--one that focuses on his life from

age 10 to 16 and another one that is a catalog of an art show featuring his

paintings held a year after he died at his alma mater--The University of Texas,

Pan American. The catalog also includes quotes from a newspaper column that he

wrote for The Mc Monitor and a speech he gave about his life at a

conference of Texas Special Education Administrators. Please feel free to

contact me at egearhart@.... I would like to send your son a copy of

these books. If you should not hear back

immediately, it is because my husband is very ill right now. But, I will get

back to you.

Blessings to you and your son,

Gearhart, Mc, TX

More and more people with SMA 2 are living longer lives. Victor's hero was a man

in Mc with SMA 2 who lived to age 50. He was married, owned several

businesses and was a community leader.

 

 

 

 

 

________________________________

From: SiouxiQ <siouxi_q@...>

Sent: Wednesday, July 25, 2012 7:04 PM

Subject: Re: Need Some Advice Please, Adolescent Issues

 

If he's excited about writing poetry, find a local place that offers open mike

night or poetry jam. I know you said you live in a small community but there's

always tiny little pockets of artists carving out a space to express themselves.

Go to your local university, the english department will know where the poets

hang out to share new material. Maybe a friend can read for him if he's

self-conscious about his voice, at least at first. Check out Marty McConnell,

Shane Koyczan and Janette Ikz on youtube, I'm a fan of poetry and they voice

some powerful truths. But he's the only one who can voice *his* truth.

And keep pushing him. Even when he pushes back. Especially when he pushes back.

One thing. This may or may not be the group for him. I've found some really good

ideas and support here, even if I don't post a lot. That said, my primary

interests are far from my disability and, socially, I spend the majority of my

time invested in very different things. It might be that this group is what

*you* need, not him.

-Susie

> >

> >

> > I am the Mom of a 16 year old young man with SMA 1 who is struggling with

alot of adolescent issues. Things were magnified because of a significant

respiratory infection in Feb 2012 that left him trach and vent dependent after a

3 month hospitalization. He had always been in school until this past year, when

he did an online High School due to the need to get all caregivers thoroughly

trained on vent, and for him to regain his strength. He is venturing back into

school this year. He will be in 10th grade.

> >

> >

> > It has not been easy for him to cultivate friendships in our smaller

community, although he has had a few very good friends over the years. He is

very interested in dating, and does not even know how to begin to break down

those barriers....He also is looking ahead to after graduation and wants to seek

out college opportunities away from home.

> >

> > I am looking for people who are on the other side of this nightmare of

adolescence that could share some wisdom about the ups and downs of surviving

adolescence as a wheelchair bound vent dependent individual with SMA. Also

wanting help as to how as a parent to support this process towards relationship

building and preparing for independence. I'd love to know from you what in your

opinion was helpful, and what to avoid at all costs!

> >

> > I am encouraging him to join this group, but he has not yet done so. His

name is and his email is brandon.jjohnson95@ if anyone is so inclined to

reach out to him.

> >

> >

> > Thanks for any advice with these issues...

> >

> >

> > Ronna

> >

> >

> >