What are my options?

[Brodi]

Hi, I'm a first time poster who has been lurking for awhile. I don't have a child, but I do have several problems that don't really *fit* any other board out there and this is the only one that can really help.

I am 25 years old, have brain damage from birth trauma (forceps) and from going into status epelipicus (sp?) at age 4. I have been diagnosed with Dyscalculia, NLD, Depression and Anxiety with Neuropsch testing and from evaluations done by the state voc rehab department. I also have Ehler's Danlos Type 3 and the joint pain/instability that goes with it.

I can't drive due to visual issues (no depth perception and visual spatial deficits) and rely on my 58 year old mother to drive me everywhere (we live in a rural county with no public transportation and a paratransit bus that requires 24 notification to come out to us, so not really any help). My mom, like I said, is nearly 60 and has a laundry list of psychiatric diagnosis's and my dad is a walking health disaster waiting to happen (obese, diabetic, hypertension controlled by drugs, workaholic in a high stress job who is away from home almost 5 days a week.) I have no siblings and no relatives in the state (TX). My mom's family (both grandparents are deceased) is spread out the entire state of CA and my dad's family is a mixture of toxic leeches, no contact and dead.

I am really worried about my future. The "plan" my mom has, is to use the money she is going to receive from the sale of my deceased grandmother's house to, when my dad retires in 6-7 years,move us out to AZ and find me a house I can live in when they pass. My math abilities are stuck at the 2nd grade level and there is NO WAY I can handle my own finances. I WILL need help in that area.

Voc rehab is going help me, hopefully, make it into college this summer (2 year associates in Mortuary Science) and by then, If I'm lucky, I'll be on SSI.

I don't really know what to do.

 

[sadandfrustrated]

Hi and Welcome. I'm sure other's will be along shortly and they may have suggestions for you. In the meantime I'd like to ask a friend of mine who works with patients with Traumatic Brain Injury (TBI) and see what she say's if that's okay with you? She may know of an agency that can help you sort all this out in the Az area. She speaks very highly of this organization although this is not where she works. You can message them on Facebook. Maybe they can give you some suggestions. https://www.facebook.com/brainline?ref=profile

 

[in a daze]

Have u applied for SSI? With your list of documented disabilities I would think you would be approved right away. Food stamps, too.

 

[InsaneCdn]

@Brodi, I don't have a lot of answers for you, as I don't live in the USA, but just wanted to tell you that lots of us would love to have a kid with your care and concern for your parents and your own future. In spite of your laundry list of challenges (which many of our kids have), you are looking for ways to make life work for you. I say... way to go.

 

[Brodi]

Hi and Welcome. I'm sure other's will be along shortly and they may have suggestions for you. In the meantime I'd like to ask a friend of mine who works with patients with Traumatic Brain Injury (Traumatic Brain Injury (TBI)) and see what she say's if that's okay with you? She may know of an agency that can help you sort all this out in the Az area. She speaks very highly of this organization although this is not where she works. You can message them on Facebook. Maybe they can give you some suggestions. https://www.facebook.com/brainline?ref=profile

Please, ask your friend! I'll check that FB group out. We won't be in AZ for several years, so if she knows of anything in SW TX (San Antonio, Austin) area, that would be helpful too.

Have u applied for SSI? With your list of documented disabilities I would think you would be approved right away. Food stamps, too.

I am going to be doing that shortly. The process was delayed duo to an unexpected illness. I had (what we think) was the flu, that morphed into chest pain/difficulty breathing and ended up being (suspected) Myocarditis, which I am now in Cardiac Rehab for.

@Brodi, I don't have a lot of answers for you, as I don't live in the USA, but just wanted to tell you that lots of us would love to have a kid with your care and concern for your parents and your own future. In spite of your laundry list of challenges (which many of our kids have), you are looking for ways to make life work for you. I say... way to go.

Thanks.

 

[nlj]

Hi Brodi

You write very well. Your posts are highly intelligent and literate. Are you sure that the 'labels' that have been given to you are correct?

From reading your posts I would say that you are totally capable of managing independently and achieving whatever goals you set for yourself.

 

[Childofmine]

Brodi, you sound like an extremely mature and intelligent young adult. I bet many of us wish we could say that about our DCs.

With your insight and clear-headed thinking, you will be able to navigate through this. So your parents aren't going to be able to help much---but your Mom does have a plan it sounds like. Are there other family members, those extended family you mention in CA, who would walk with you through this and be a sounding board and source of support?

Asking for information and help (which you clearly are doing) is a great step.

Also, friends, is there a Big Brother and Big Sister-type organization for adults?

Hang in there Brodi. It sounds like to me you have what it takes to be a success in life. Hugs today.

 

[Brodi]

Hi Brodi

You write very well. Your posts are highly intelligent and literate. Are you sure that the 'labels' that have been given to you are correct?

From reading your posts I would say that you are totally capable of managing independently and achieving whatever goals you set for yourself.

Oh,more then sure!
All my life I have had scored above average in reading comprehension and, according to the psychologist who did the neropsych testing, in that regard my IQ is super high. But, I cannot do math at above the (early) second grade level. What you see here is sort of like how a person who has been blind their whole life MIGHT have better hearing then the average person, change "blind" to math and "hearing" to things involving reading, facts, etc.

Brodi, you sound like an extremely mature and intelligent young adult. I bet many of us wish we could say that about our DCs.

With your insight and clear-headed thinking, you will be able to navigate through this. So your parents aren't going to be able to help much---but your Mom does have a plan it sounds like. Are there other family members, those extended family you mention in CA, who would walk with you through this and be a sounding board and source of support?

Asking for information and help (which you clearly are doing) is a great step.

Also, friends, is there a Big Brother and Big Sister-type organization for adults?

Hang in there Brodi. It sounds like to me you have what it takes to be a success in life. Hugs today.

Thank you, for your encouragement.

We are also sort of the "black sheep" of the family. My mom is the only without a college degree (right now she is 100% military disabled due to her MULTIPLE psychiatric issues), the only one who had one kid and the only one NOT in CA. Plus, I am the only one with any real challenges (outside of a cousin with suspected ADHD and another three who may be on the spectrum) and the only one who is transgender. I also haven't seen them (outside of one uncle) since 2010. While the above sounds like no big deal, it has created a proverbial chasm between us. We have never really been "part" of the family and at times were treated as sort of a charity case (when I was younger they would send us money at Christmas since we have hovered near the poverty line most of my life).

So, I don't really have support outside of my parents (mostly my mom, dad does not have a clue what to do with me). I doubt there is a BB&BS type group for adults, though how I wish there was.

 

[pasajes4]

Brodi, I am in San Antonio. PM me

 

[AppleCori]

Hi Brodi and welcome,

Stick around. I bet there are people who may have suggestions, but haven't seen your post yet.

The hospital/voc. rehab should be able to give you some options on community resources that can help you as well. I know there are organizations that will help you to manage your money.

You should be able to get into Section 8 housing.

Why do you want to move to AZ? It doesn't sound like you have relatives there. Just curious.

Anyway, I just wanted to welcome you to the forum!

Apple

 

[Brodi]

Brodi, I am in San Antonio. PM me

How do you PM someone? I couldn't figure out how.

Hi Brodi and welcome,

Stick around. I bet there are people who may have suggestions, but haven't seen your post yet.

The hospital/voc. rehab should be able to give you some options on community resources that can help you as well. I know there are organizations that will help you to manage your money.

You should be able to get into Section 8 housing.

Why do you want to move to AZ? It doesn't sound like you have relatives there. Just curious.

Anyway, I just wanted to welcome you to the forum!

Apple

I want to move to AZ because I've heard the services are better in that state and the area we considering is supposed to have good public transportation.

 

[InsaneCdn]

PM - private message. Also known as a "conversation". Go to the upper right hand part of the forum screen and click on "inbox" to manage your conversations.

OR, click on the avatar for the person you want to start a conversation with - and you will have the option to "start a conversation"

 

[Brodi]

PM - private message. Also known as a "conversation". Go to the upper right hand part of the forum screen and click on "inbox" to manage your conversations.

OR, click on the avatar for the person you want to start a conversation with - and you will have the option to "start a conversation"

OK, thanks!

 

[sadandfrustrated]

Hi Brodi, I spoke to my friend who works at the Brain Injury Association of Philly Pa and she told me this...

Here is the website for the Brain Injury Alliance of Arizona

http://biaaz.org/

Here is their resource line, which I would recommend as a first contact:

1-888-500-9165

I didn't get a chance to ask her about any resources available in the Tx. area, but I will when she comes back from her weekend away.

 

[Brodi]

Hi Brodi, I spoke to my friend who works at the Brain Injury Association of Philly Pa and she told me this...

Here is the website for the Brain Injury Alliance of Arizona

http://biaaz.org/

Here is their resource line, which I would recommend as a first contact:

1-888-500-9165

I didn't get a chance to ask her about any resources available in the Tx. area, but I will when she comes back from her weekend away.

Thank you for that info.

 

[Copabanana]

Hi Brodi,.

To PM somebody look up at the top right where it says inbox and put your cursor over that. You will see: start a new conversation.

I want to echo what everybody else has said. You appear to be a highly intelligent and competent person who writes eloquently.

Do not sell yourself short in terms of achieving whatever goals you may have now or in the future.

Many of our kids have multiple issues. My son was born drug-exposed. He had a seizure at 5. When he was 19 we discovered he had had chronic hepatitis since birth. He has had depression and anxiety and other issues. He has always been too anxious to really drive much. Then 5 years ago he had a traumatic brain injury. He is on SSI for mental illness. He just turned 27. I have every expectation that he will work this through. He is doing it.

If I was in your situation I think I would do just as you are doing. I would get the SSI squared away. Then I would think about an environment where I could both have the best chance of meeting my goals and having access to activities and people, and an environment with especially good services for people with disabilities and mobility issues. And good public transportation. Those places would typically be metropolitan areas.

I know nothing about Arizona but would wonder if people there are car-dependent. And I would want to investigate and make sure there is good public transportation, and whether the climate would permit me to be independent and mobile without a car.

These are all issues that have affected my son who does not live with us. We live in a smallish city without the resources that my son would want and need. He does much better and is happier in a large metro area which is about 3 hours away.

There is the money issue in Metro areas where everything seems to cost so much. My son is living in an apartment with other 3 other people. He has not expressed interest in living on his own. At least not yet.

SSI does allow work and you can earn I think it is somewhere like $1700 a month without it affecting your SSI benefit (please verify that).

I see you and your situation as having so much potential. I know how hard it is when you feel and know the limitations. But there is the promise too.

Keep posting. Keep at it. Good for you. Your Mom (and Dad) must be proud. I would be.

COPA

 

[Copabanana]

Brodi, like others I feel you may be underestimating your abilities, even with money. That said, with SSI, you can request a payee, if you need one. The officials are reluctant to do this but if ones disability affects money management, they will designate a payee. It does not need to be a family member or somebody you know. Community member volunteers are designated, who take responsibility to pay rent, utilities and dispense monies for spending, food, etc. I knew somebody who did this and she was highly responsible and caring of the person she assisted.

There are all kinds of services for people, and people who want to assist them. There is an agency called Center for Independent Living in Berkeley, Ca. They were the group that was responsible for fighting for the Americans With Disabilities Act. They are advocates for the disabled. I am sure there are other agencies like this of which I am not familiar. But they would be a good resource for information, to get you started.

COPA

 

[TessinTx]

Brodi,
I'm sorry I'm late to the party. I hope you read this. I cried when I read your post. I also have brain damage due to birth trauma. It makes life difficult in inexplicable, incalculable ways. I am 32 and I still live at home. I work part time as a secretary and housesitter. have been diagnosed with Nonverbal learning disorder and Ehlers danlos type 3. But that's enough about me...I've been Ithinking about your situation. I think pursuing SSI is a good idea. You can work while on SSI . Maybe you could move to where the money would stretch further and you could get a job teaching ESL. Teaching ESL may or may not be a good fit for you...What else do you enjoy doing? You certainly have a way with words. COPA is right; anyone would be lucky to have you as a son. I can't say all I would like to here. PM me! It may seem like we (those with Traumatic Brain Injury (TBI) and other forms of brain damage) are the weakest among society but in actuality strongest among them. We suffer, both physically and emotionally, in ways that others simply cannot understand.

 

[TessinTx]

Correction: move to another country where SSI payments will stretch further. I hear Paraguay is nice. Do you speak any other languages?

 

[TessinTx]

I mean child, not son. Sorry. I'm not doing well tonight.