Introduction - Mom to 21 year old w/multiple dx

[Warmheart]

Yes! I hear you. SCD absolutely deserves good supports in place, just like ASD does. I know this process isn't easy, and you may even feel alone in this. You are not alone. You are also doing an excellent job of advocating for your son!

While you wait on that waitlist, why not contact the closest chapter to you of The Arc, and see if they have an "Autism Now" center in your area? With his diagnosis of SCD and executive functioning challenges, he may be able to get some of the agency supports he needs just by you contacting The Arc directly. Not all Arcs take SSI to help defray service costs, but some do. Even so, just connecting with them can bring you both support and positive experiences. The one near me has good parent support groups, resource sharing, even brainstorming meetings. You don't always need to wait for that waitlist, nor have deep pockets, to get connected to those who relate to you both.

I'm hoping the best for you and your son!

 

[Keigan]

Thanks so much! Yes, I totally agree with you, and I think that is my son's biggest challenge at this juncture. However, there's also somewhat of a catch-22 in that it's almost impossible for him to see or understand just how impaired he is and the critical life skills he's missing because he has not had the life experience to know what is missing, if that makes sense. But to put him out there so he can gain the life experience can only be done with a very high level of support in place, and it will take a LONG time and a lot of one-to-one work and repetitiveness. I know that even with a neuro-typical person or young adult, in the best of circumstances, the pre-frontal cortex does not fully develop until around age 25. So when you have that to begin with and then you add in everything my son is dealing with it makes it extremely challenging, and scary!!

I agree, we don’t know what we are missing until we try something new. But, some times “this life” is a very good thing.

 

[Dadwith2Autisticsons]

Your wife is very lucky to have you! And I guess that is actually one of my biggest concerns in my son's case. The truth is that it would be much easier if he were a female in so many respects, especially when it comes to thinking of longterm relationships, marriage, kids, etc. I shudder to even think about what will happen in his future because I cannot fathom how he will even be able to support himself let alone a wife and/or family. The problem is that he so desperately wants to have a girlfriend and a meaningful relationship, but it would take an angel in disguise to be able to fully comprehend his challenges and to have the patience to work with them and around them.

His dad (my ex) was only diagnosed later in life with ADHD, post divorce. He had many of the same characteristics of my son as far as impulse control, no analytical skills, and for the most part living in a fantasy world much of the time. However, he did have enough executive functioning skills, street smarts, and social skills to be able to maintain jobs, live on his own without supports, and basically manage to get by. Unfortunately my son does not have those abilities. Bottom line, my biggest fear is that the older he gets and the more he realizes his limitations—especially with relationships and being self-sufficient—the more at risk he is going to be with depression and other mental health issues.

I try my best to take things day by day and be optimistic and have faith, but it's really hard when the reality of my son's challenges are right in front of my eyes on a daily basis. I do believe that he could eventually acquire a lot of the critical life skills he's missing, but it's going to take years to get to that point and I'm not sure he will be capable of being that patient.

Thanks, I appreciate that, but I see my wife as a great person and strong benefit to me too. I mean, whereas I focus on the present and specifics, she sees the general and the future. Whereas I am great "now" with talking on phones and one-to-one talks in quieter surroundings, and with expressing through writings, too, she is great at socializing with strangers, and great chatting to groups of persons, and she does not hesitate initiating as much.

My wife's father has ADHD too, so she got that through his genetics likely. He was the life of the party and could engage others, with long-winded general stories and friendly demeanor. He had severe issues, though, and never wanted to be a law clerk, but that culture and his parents forced it upon him. He got married, despite that woman, my wife's mother, preferring someone more successful. I guess she thought she could change him, or she saw he had some benefit, from his other social abilities.

Things did not work out between my wife's parents, and they divorced after about seven years, but he found another lady that accepted him more and that would stay with him, despite his issues and early retirement. On another positive note, please note more women are working these days, and more could accept a stay-at-home guy, or less successful guy, and there could be other women that are not in great situations themselves, that do not want to live alone, and could see differences or similarities in a man as good.

Women these days often want more communicative and expressive guys, and one with a special talent would be seen as a bonus, too. On this forum, there have been numerous NT women that accepted a large part of the guys Aspie behaviors and condition, but they wanted or needed a more expressive and romantic guy, one that would stay. It does not sound like your son has many issues there, and he also wants a girlfriend and a meaningful relationship. Those are big pluses too, as some here are even hesitant to enter long-term relationships.

It must be difficult for you thinking things may never change such that he could either live independently, or with meaningful or lasting relationships or work, but I see things could work out, if a thought out plan is involved. You may be surprised one day when things start turning around. For instance, of course if your son wants a relationship, he would have to start looking in places where he could find that compatibility, taking into account his interests, personality, and any different traits he needs in the other to help him.

The traits I think your son should also consider in a woman, when deciding where to look, is one that not only is good with details, and prioritizing, but who is compassionate. She should have confidence and strength in herself in not needing to please her friends, or to go with the flow, but to follow her heart and with desire to assist and love another, and see, understand and appreciate the many good things about a guy who could be seen as different by society. She should have patience, but be able to work with him to bring out his best. Having a mutual talent or interest would be strongly preferred, too.

I was a bit opposite of your son. I went from an extremely shy and withdrawn state most of my entire life, and fearing everything in the world and avoiding everything, to looking forward to one on one talks with persons. I was not social or friendly on the surface. I learned through my dating experiences, which resulted from online friendships first. This motivated me more, to improve myself more, and that led to marriage to my wife 12 years ago. I realize those with ADHD can at times have motivation issues, but let music be his motivation, and to share that talent with anyone who will listen. If I were a single girl, instead of married guy, your son
would intrigue me, as I like helping, and I love music. There must be open minded women out there like I. I hope so!

 

[Momofone23]

Yes! I hear you. SCD absolutely deserves good supports in place, just like ASD does. I know this process isn't easy, and you may even feel alone in this. You are not alone. You are also doing an excellent job of advocating for your son!

While you wait on that waitlist, why not contact the closest chapter to you of The Arc, and see if they have an "Autism Now" center in your area? With his diagnosis of SCD and executive functioning challenges, he may be able to get some of the agency supports he needs just by you contacting The Arc directly. Not all Arcs take SSI to help defray service costs, but some do. Even so, just connecting with them can bring you both support and positive experiences. The one near me has good parent support groups, resource sharing, even brainstorming meetings. You don't always need to wait for that waitlist, nor have deep pockets, to get connected to those who relate to you both.

I'm hoping the best for you and your son!

Thanks so much! I love the Arc, they are wonderful! In fact, I just a few weeks ago learned that they have a Beneficiary Advocate who helps with things like waivers, services, etc. I started working with her and so far she really seems to know her stuff, and understands my son's level of need. With her help I'm going to reapply for an EDCD waiver for my son. They denied him a few years ago, but I think we may have a better shot now. If he gets that there's no waitlist and it will open up a lot more services and service hours.

Thanks, I appreciate that, but I see my wife as a great person and strong benefit to me too. I mean, whereas I focus on the present and specifics, she sees the general and the future. Whereas I am great "now" with talking on phones and one-to-one talks in quieter surroundings, and with expressing through writings, too, she is great at socializing with strangers, and great chatting to groups of persons, and she does not hesitate initiating as much.

My wife's father has ADHD too, so she got that through his genetics likely. He was the life of the party and could engage others, with long-winded general stories and friendly demeanor. He had severe issues, though, and never wanted to be a law clerk, but that culture and his parents forced it upon him. He got married, despite that woman, my wife's mother, preferring someone more successful. I guess she thought she could change him, or she saw he had some benefit, from his other social abilities.

Things did not work out between my wife's parents, and they divorced after about seven years, but he found another lady that accepted him more and that would stay with him, despite his issues and early retirement. On another positive note, please note more women are working these days, and more could accept a stay-at-home guy, or less successful guy, and there could be other women that are not in great situations themselves, that do not want to live alone, and could see differences or similarities in a man as good.

Women these days often want more communicative and expressive guys, and one with a special talent would be seen as a bonus, too. On this forum, there have been numerous NT women that accepted a large part of the guys Aspie behaviors and condition, but they wanted or needed a more expressive and romantic guy, one that would stay. It does not sound like your son has many issues there, and he also wants a girlfriend and a meaningful relationship. Those are big pluses too, as some here are even hesitant to enter long-term relationships.

It must be difficult for you thinking things may never change such that he could either live independently, or with meaningful or lasting relationships or work, but I see things could work out, if a thought out plan is involved. You may be surprised one day when things start turning around. For instance, of course if your son wants a relationship, he would have to start looking in places where he could find that compatibility, taking into account his interests, personality, and any different traits he needs in the other to help him.

The traits I think your son should also consider in a woman, when deciding where to look, is one that not only is good with details, and prioritizing, but who is compassionate. She should have confidence and strength in herself in not needing to please her friends, or to go with the flow, but to follow her heart and with desire to assist and love another, and see, understand and appreciate the many good things about a guy who could be seen as different by society. She should have patience, but be able to work with him to bring out his best. Having a mutual talent or interest would be strongly preferred, too.

I was a bit opposite of your son. I went from an extremely shy and withdrawn state most of my entire life, and fearing everything in the world and avoiding everything, to looking forward to one on one talks with persons. I was not social or friendly on the surface. I learned through my dating experiences, which resulted from online friendships first. This motivated me more, to improve myself more, and that led to marriage to my wife 12 years ago. I realize those with ADHD can at times have motivation issues, but let music be his motivation, and to share that talent with anyone who will listen. If I were a single girl, instead of married guy, your son
would intrigue me, as I like helping, and I love music. There must be open minded women out there like I. I hope so!

Thanks so much, this is all very helpful and I so appreciate you sharing your journey, experiences, and insight. My son had one girlfriend for about 5 months I think about a year ago. She's a few years younger and is part of the music therapy program he's involved with. Because of my son's SCD and other challenges (impulse control, especially) he simply does not understand the push and pull of a relationship, picking up on cues, etc. He quickly descends on people and does not understand how or why people need their space. So the girlfriend finally had to call it quits because it was just too much. I pray with time and the help/support he needs this will improve to the point where he's capable of maintaining a relationship whether it's platonic or romantic. He's super charming and outgoing so people are drawn to that, but once he gets a friend, or in this case, a girlfriend, he latches onto people and can be suffocating. The neuropsych explained that his visual/spatial deficits are so significant that it impacts him in pretty much every facet of his life, especially socially/emotionally. And as charming and friendly as he is on the outside, underneath it all are pretty narcissistic traits and tendencies. Even though he doesn't necessarily come out and say things directly to people (except for me), it becomes obvious over time that he is SO self-absorbed and it's extremely difficult for him to put himself in another person's shoes to even the most basic extent.

I hope and pray that with time as he matures, and with the right help and supports, that the social challenges will improve, otherwise he is going to end up one very lonely and troubled young man and adult. Everyone who doesn't have a close relationship with him adores him because he has a very convincing veneer of an incredibly kind, compassionate, super polite young man. They would be beyond shocked if they spent even a day at our house to see how emotionally abusive he can be towards me. The only people who have had opportunities to see the other side of him—and how impaired he is in his daily life— are his home-based social worker he had for about 3 years, and the staff at the residential centers and hospital where he was in treatment for almost 2 years.

Despite all of the above, I remain confident that somehow some way I'll be able to find the help and support my son needs to have hope for a viable future. I'm getting ready to send a long email out and bcc everyone to try and find someone who can act as a mentor/coach and essentially shadow my son from morning until night maybe 2-3 days per week to help him with life skills, social skills, etc. I've tried posting at the local colleges, but no luck so far.

 

[Warmheart]

Awesome getting waiver services help at a The Arc! Giving you a high-five!

 

[Dadwith2Autisticsons]

Thanks so much! I love the Arc, they are wonderful! In fact, I just a few weeks ago learned that they have a Beneficiary Advocate who helps with things like waivers, services, etc. I started working with her and so far she really seems to know her stuff, and understands my son's level of need. With her help I'm going to reapply for an EDCD waiver for my son. They denied him a few years ago, but I think we may have a better shot now. If he gets that there's no waitlist and it will open up a lot more services and service hours.


Thanks so much, this is all very helpful and I so appreciate you sharing your journey, experiences, and insight. My son had one girlfriend for about 5 months I think about a year ago. She's a few years younger and is part of the music therapy program he's involved with. Because of my son's SCD and other challenges (impulse control, especially) he simply does not understand the push and pull of a relationship, picking up on cues, etc. He quickly descends on people and does not understand how or why people need their space. So the girlfriend finally had to call it quits because it was just too much. I pray with time and the help/support he needs this will improve to the point where he's capable of maintaining a relationship whether it's platonic or romantic. He's super charming and outgoing so people are drawn to that, but once he gets a friend, or in this case, a girlfriend, he latches onto people and can be suffocating. The neuropsych explained that his visual/spatial deficits are so significant that it impacts him in pretty much every facet of his life, especially socially/emotionally. And as charming and friendly as he is on the outside, underneath it all are pretty narcissistic traits and tendencies. Even though he doesn't necessarily come out and say things directly to people (except for me), it becomes obvious over time that he is SO self-absorbed and it's extremely difficult for him to put himself in another person's shoes to even the most basic extent.

I hope and pray that with time as he matures, and with the right help and supports, that the social challenges will improve, otherwise he is going to end up one very lonely and troubled young man and adult. Everyone who doesn't have a close relationship with him adores him because he has a very convincing veneer of an incredibly kind, compassionate, super polite young man. They would be beyond shocked if they spent even a day at our house to see how emotionally abusive he can be towards me. The only people who have had opportunities to see the other side of him—and how impaired he is in his daily life— are his home-based social worker he had for about 3 years, and the staff at the residential centers and hospital where he was in treatment for almost 2 years.

Despite all of the above, I remain confident that somehow some way I'll be able to find the help and support my son needs to have hope for a viable future. I'm getting ready to send a long email out and bcc everyone to try and find someone who can act as a mentor/coach and essentially shadow my son from morning until night maybe 2-3 days per week to help him with life skills, social skills, etc. I've tried posting at the local colleges, but no luck so far.

The general public does not see my wife's issues either, but just past in-patient hospital staff, etc, or those who trigger her in some big way. In one regard it is good most cannot see that side, as that can maybe give them and loved ones hope that that chaos does not go with them everywhere, and that some future with others or another could exist, if they want that. But, if those others cannot see those issues, when meltdowns do not occur, that can make it harder for us. It is us handling things mostly alone, then, as traditional treatments often fail. At times, I think the being charming and fitting is their public persona, but this is driving them crazy.

So, they get home and then at times get upset with us, for them being someone else, or after that stress builds more, or they relax and be themselves with us, which at times is not at all good for us. We cannot win either way, either. And they may feel the same. So, I understand that. But, we try to help them, and we get accused of trying to change them. And if we allow all those things, or support them too much, we are seen by others as enabling them, and this encourages any improper attitudes or wrongs. So, I have learned from my marriage of over twelve years that doing too much or too little is a recipe for failure.

The key I feel is to know what things we should help them with, when to give them space and back away, and when to get assistance for them from others, and when to help ourselves. I feel you are doing exactly the right thing about the life coach/mentor. I wish my wife had that before marriage to me. My wife is into art related home therapy, and other things she learns from me, which is with purpose to make her more independent and mindful of details and the importance of doing efficiently and effectively practical life things. As adults, it should be their desire to pull their fair share. My wife as mentioned many times has a great other side though.

But, that clinginess is there, too, and when I show at time a need to back away, sometimes I am made to feel guilty. We have rights to happiness and space too, and that should not reflect badly on us. We have a right too to be ourselves, as long as we are not harming anyone too. So yes, I can say I have been emotionally drained time and time again, and if that makes my wife upset by seeing this, I am sorry. And I am sorry for being my less than positive self here, but I wanted you to see you are not alone there. I call telling that truth as tough love, as we have feelings, rights and needs, too. Sometimes they need to see or hear the truth, in a loving way.

 

[Momofone23]

The general public does not see my wife's issues either, but just past in-patient hospital staff, etc, or those who trigger her in some big way. In one regard it is good most cannot see that side, as that can maybe give them and loved ones hope that that chaos does not go with them everywhere, and that some future with others or another could exist, if they want that. But, if those others cannot see those issues, when meltdowns do not occur, that can make it harder for us. It is us handling things mostly alone, then, as traditional treatments often fail. At times, I think the being charming and fitting is their public persona, but this is driving them crazy.

So, they get home and then at times get upset with us, for them being someone else, or after that stress builds more, or they relax and be themselves with us, which at times is not at all good for us. We cannot win either way, either. And they may feel the same. So, I understand that. But, we try to help them, and we get accused of trying to change them. And if we allow all those things, or support them too much, we are seen by others as enabling them, and this encourages any improper attitudes or wrongs. So, I have learned from my marriage of over twelve years that doing too much or too little is a recipe for failure.

The key I feel is to know what things we should help them with, when to give them space and back away, and when to get assistance for them from others, and when to help ourselves. I feel you are doing exactly the right thing about the life coach/mentor. I wish my wife had that before marriage to me. My wife is into art related home therapy, and other things she learns from me, which is with purpose to make her more independent and mindful of details and the importance of doing efficiently and effectively practical life things. As adults, it should be their desire to pull their fair share. My wife as mentioned many times has a great other side though.

But, that clinginess is there, too, and when I show at time a need to back away, sometimes I am made to feel guilty. We have rights to happiness and space too, and that should not reflect badly on us. We have a right too to be ourselves, as long as we are not harming anyone too. So yes, I can say I have been emotionally drained time and time again, and if that makes my wife upset by seeing this, I am sorry. And I am sorry for being my less than positive self here, but I wanted you to see you are not alone there. I call telling that truth as tough love, as we have feelings, rights and needs, too. Sometimes they need to see or hear the truth, in a loving way.

Wow! If I didn't any better I would think you were a fly on the wall in my house because pretty much everything you describe about your wife, and your own experiences, is almost an exact carbon copy of my son, and I what I experience dealing with him and with others. I cannot thank you enough for sharing your experiences and letting me knot that I am not alone. I cannot tell you how alone I feel a lot of the time!

The part about how others see us as enabling because they simply do not or cannot comprehend what we see and deal with behind closed doors. Boy, does that every ring true for me!! In fact I was just saying that exact thing to a friend today over coffee. She is one of the few who really "gets it."

Like you said, I totally agree that the key is to know when we should help and when to give them space, and when to get help from others. I find that it is a constant balancing and juggling act trying to figure all of that out and manage to keep my own head above water.As for the coach/mentor, I've been trying for quite some time to find people but it's really tough. I know they are out there, just don't know where.

I was telling my friend today that I have this idea that came to my mind a few weeks ago and it's been hard to get it out of my head. If and when I have the time, I plan to write an article or maybe even a book about life in an invisible wheelchair. I think especially for people like school teachers it could help to understand the challenges of kids and young adults like my son. It was a never-ending battle with the school district trying to get appropriate services to help my son because it was almost impossible to get them to believe me, or even professionals working with him.

 

[Momofone23]

Awesome getting waiver services help at a The Arc! Giving you a high-five!

Thanks so much! It's no easy feat that is for sure! And I haven't gotten much in place as of yet, but hopefully will soon.

 

[Fitzo]

Nothing I can add to what others have said except your son is incredibly lucky to have a mother like you! I can't even imagine how difficult life has been for both of you, but I hope you have the strength to keep going until you find the help you both need.
I sometimes wonder if being good looking is more of a curse than a blessing as it seems to make people blind to what else is going on, even to yourself. Just a thought!

 

[Momofone23]

Thank you so much for your kind words and support. I truly appreciate it! Wish I would have known about this forum long ago. Very thankful to have found you all!

 

[Dadwith2Autisticsons]

Wow! If I didn't any better I would think you were a fly on the wall in my house because pretty much everything you describe about your wife, and your own experiences, is almost an exact carbon copy of my son, and I what I experience dealing with him and with others. I cannot thank you enough for sharing your experiences and letting me knot that I am not alone. I cannot tell you how alone I feel a lot of the time!

The part about how others see us as enabling because they simply do not or cannot comprehend what we see and deal with behind closed doors. Boy, does that every ring true for me!! In fact I was just saying that exact thing to a friend today over coffee. She is one of the few who really "gets it."

Like you said, I totally agree that the key is to know when we should help and when to give them space, and when to get help from others. I find that it is a constant balancing and juggling act trying to figure all of that out and manage to keep my own head above water.As for the coach/mentor, I've been trying for quite some time to find people but it's really tough. I know they are out there, just don't know where.

I was telling my friend today that I have this idea that came to my mind a few weeks ago and it's been hard to get it out of my head. If and when I have the time, I plan to write an article or maybe even a book about life in an invisible wheelchair. I think especially for people like school teachers it could help to understand the challenges of kids and young adults like my son. It was a never-ending battle with the school district trying to get appropriate services to help my son because it was almost impossible to get them to believe me, or even professionals working with him.

I relate so much to your situation, as it seems so similar. Also, I wanted to say what makes it tougher is I think we care too much. That is why it hurts a lot when others not only do not see the 'pain' and struggles in our loved one, but the anguish we have had and have to go through. We can only do so much by ourselves, when others are not willing or able to help because of not seeing the seriousness of the situation or knowing what to do.

I realize a big part of this also is: the loved one with such a condition must want to cooperate and/or be motivated in becoming more functional or independent, and in being more open minded, fair and rational, and in prioritizing and listening better, and by putting forth more effort. But, I balance that with, "Those traits or signs and symptoms seems to be part of their condition." So, at times it seems hopeless.

That is also because treatments often do not work if the persons either are too proud or stubborn to admit to any wrong or severe health issue, cannot see clearly a problem, or if they feel treatments are making their conditions worse. In our situation, all past traditional treatments attempted also made the situation worse, as wrong diagnostics occurred, resulting in wrong treatments, severe side effects, and more anxieties, suspicions and fears.

I just do not think those professionals in the educational and medical communities often are set up in a way to help that person in 'The Invisible Wheelchair.' They either have rigid protocols to follow, assume things that are not true and by an inability to look deeper, and as they generally care just as much about money, following, or just the basics than making that extra effort, leading, or showing more unselfish efforts.

And so, I do feel your idea of an article or book about such issues and hidden conditions and struggles is a great one. So much seen in public is not what happens behind closed doors, and so much masking or dual personas can occur too. Often it is the caregiver or one spouse feeling the pressure to do everything, and we need more support and resources for those persons.

On a side note, I love writing, but I understand too how difficult it is when we have lots of minute-by-minute responsibilities, that we feel many other persons do not have. My fourth book about our two Autistic sons was the hardest to write, as I felt I had three other responsibilities in my life then. Add caring for their basic needs, with homeschooling our children, it is hard. So, it took lots of time writing at night. I finished that book though in May, after six weeks of writing.

So, if you ever decide to write an article or book, and need some advice or help on such a topic, let me know. I love any subject that involve analysis, human behaviors or societal issues, and with purpose to educate or help others.

 

[Momofone23]

Wow! How did you ever find time to write 4 books, that's amazing! I would love to see them, are they on Amazon or how can I see them? And thanks so much for the offer to help with advice for an article or book, I really appreciate it.

I have ideas of what I envision for an "Invisible" show or article/book but have to organize my thoughts and get them down on paper. I'm thinking of approaching the head of the music therapy center my son is heavily involved with about creating a production based on the invisible wheelchair concept. He's a creative genius and has written and produced several shows that address topics such as suicide prevention and living with disabilities. My son has performed in both of the shows. He and the cast for the suicide prevention production are performing at the Kennedy Center next month, very exciting!

The part you wrote about others not understanding the seriousness of the situation and how difficult that is, is one of my biggest challenges. Even my immediate family still does not understand and thinks I'm exaggerating or making mountains out of mole hills.

 

[Dadwith2Autisticsons]

Wow! How did you ever find time to write 4 books, that's amazing! I would love to see them, are they on Amazon or how can I see them? And thanks so much for the offer to help with advice for an article or book, I really appreciate it.

I have ideas of what I envision for an "Invisible" show or article/book but have to organize my thoughts and get them down on paper. I'm thinking of approaching the head of the music therapy center my son is heavily involved with about creating a production based on the invisible wheelchair concept. He's a creative genius and has written and produced several shows that address topics such as suicide prevention and living with disabilities. My son has performed in both of the shows. He and the cast for the suicide prevention production are performing at the Kennedy Center next month, very exciting!

The part you wrote about others not understanding the seriousness of the situation and how difficult that is, is one of my biggest challenges. Even my immediate family still does not understand and thinks I'm exaggerating or making mountains out of mole hills.

That is fantastic about your son, and his very creative side in writing, producing and being a part of such shows that involves such important topics. Whatever ideas you both come up regarding the invisible wheelchair theme, go for it. Ask that head of the music therapy center, and I bet they will show at least some desire to seriously consider helping there. I do feel society needs to not assume that others that look fine from the surface, that all is well. My wife is often assumed because of how she looks that she is really successful, in terms of academics and employment. Well, how many of them create suicide or suffer silently, as that society shuns persons seen as weak or mentally ill?

Whenever I write a book, I organize my thoughts as well, by creating a rough outline to follow, but with alterations allowed along the way as when I start writing, new ideas and a new direction or flow comes up, or sometimes a new preference for order and contents appear. Usually, my very first step is thinking about the purpose of the book, and who my intended target audience is. Then things immediately start to fall into place, as I think and write books quickly, mostly at nights when I have less responsibilities.

My first nonfiction work I actually wrote though when living alone for twenty years after leaving home. The first one was a story of my traumatic life through my thirties, with life at home for the first eighteen years and then mostly living alone, with exception of two years of life together with my brother. It highlighted the not only ways I coped and survived, but showing my strength in finding my own ways to persevere, grow and find happiness.

My second, written just after marrying my wife, was about important or controversial societal issues and finding unique ways to solve them through analysis of all points of view and what has worked and not, and using other sound reasoning approaches to make this society better and healthier and safer for all. The third book was about finding ways to bring out, hone or develop good to great character traits, things that they do not teach the importance of or how to achieve at school. I focus in that book on how everyone can be seen as a great person, if they put forth the efforts there, and have the knowledge and great attitude.

My first three works are still in manuscript form, being three hundred pages each or so, and I have given several copies of these free to last persons I befriended online, but with hesitancy to publish the first two because it involved the unkind truths about my past family, or as it entailed controversial views about sensitive topics. The third book I completed just after our first son Aaron was born. I will publish that one next likely, as it will offend less.

My latest work, my fourth, I self published in May. It is in soft cover form and formatted well, and anybody can purchase it by going to my website listed in my profile, but I offer a free over 300-page version in PDF file by email attachment for anyone who requests such. That book focuses on a Dad's perspective of life raising two Autistic children, from each of their births to up until recently, with much attention on the failures of the medical community, through our numerous detailed experiences involving them. This work will give great insights to what caregivers go through daily, in terms of their thoughts, feelings and actions, and how many other societal sectors could be doing much more, with solutions given by me as well for each one of those.

 

[Momofone23]

That is fantastic about your son, and his very creative side in writing, producing and being a part of such shows that involves such important topics. Whatever ideas you both come up regarding the invisible wheelchair theme, go for it. Ask that head of the music therapy center, and I bet they will show at least some desire to seriously consider helping there. I do feel society needs to not assume that others that look fine from the surface, that all is well. My wife is often assumed because of how she looks that she is really successful, in terms of academics and employment. Well, how many of them create suicide or suffer silently, as that society shuns persons seen as weak or mentally ill?

Whenever I write a book, I organize my thoughts as well, by creating a rough outline to follow, but with alterations allowed along the way as when I start writing, new ideas and a new direction or flow comes up, or sometimes a new preference for order and contents appear. Usually, my very first step is thinking about the purpose of the book, and who my intended target audience is. Then things immediately start to fall into place, as I think and write books quickly, mostly at nights when I have less responsibilities.

My first nonfiction work I actually wrote though when living alone for twenty years after leaving home. The first one was a story of my traumatic life through my thirties, with life at home for the first eighteen years and then mostly living alone, with exception of two years of life together with my brother. It highlighted the not only ways I coped and survived, but showing my strength in finding my own ways to persevere, grow and find happiness.

My second, written just after marrying my wife, was about important or controversial societal issues and finding unique ways to solve them through analysis of all points of view and what has worked and not, and using other sound reasoning approaches to make this society better and healthier and safer for all. The third book was about finding ways to bring out, hone or develop good to great character traits, things that they do not teach the importance of or how to achieve at school. I focus in that book on how everyone can be seen as a great person, if they put forth the efforts there, and have the knowledge and great attitude.

My first three works are still in manuscript form, being three hundred pages each or so, and I have given several copies of these free to last persons I befriended online, but with hesitancy to publish the first two because it involved the unkind truths about my past family, or as it entailed controversial views about sensitive topics. The third book I completed just after our first son Aaron was born. I will publish that one next likely, as it will offend less.

My latest work, my fourth, I self published in May. It is in soft cover form and formatted well, and anybody can purchase it by going to my website listed in my profile, but I offer a free over 300-page version in PDF file by email attachment for anyone who requests such. That book focuses on a Dad's perspective of life raising two Autistic children, from each of their births to up until recently, with much attention on the failures of the medical community, through our numerous detailed experiences involving them. This work will give great insights to what caregivers go through daily, in terms of their thoughts, feelings and actions, and how many other societal sectors could be doing much more, with solutions given by me as well for each one of those.

Wow, these all sound like amazing books, and sounds like you have certainly been through a lot yourself! I would love to get the PDF of your latest book. I'll send you a pm with my email. My son is actually not the one who wrote anything for the shows, it's the music therapist and director of the center who has come up with all of the concepts and has written and produced the shows. He is incredibly talented and an amazing human being who has changed (and saved!) hundreds if not thousands of lives. In fact, I spent many hours last year putting together a submission to nominate him for CNN Hero. He is that amazing!! A documentary is actually coming out as I write this about Tom's work (the music therapist) over a 5 year period with a young man who had a catastrophic traumatic brain injury at age 18 while snowboarding without a helmet. Here's the website if you want to have a look. Home.

 

[Dadwith2Autisticsons]

Wow, these all sound like amazing books, and sounds like you have certainly been through a lot yourself! I would love to get the PDF of your latest book. I'll send you a pm with my email. My son is actually not the one who wrote anything for the shows, it's the music therapist and director of the center who has come up with all of the concepts and has written and produced the shows. He is incredibly talented and an amazing human being who has changed (and saved!) hundreds if not thousands of lives. In fact, I spent many hours last year putting together a submission to nominate him for CNN Hero. He is that amazing!! A documentary is actually coming out as I write this about Tom's work (the music therapist) over a 5 year period with a young man who had a catastrophic traumatic brain injury at age 18 while snowboarding without a helmet. Here's the website if you want to have a look. Home.

I misread that statement about the writing and producing, thinking it was your son who did that, in addition to his talent for music, so sorry. But, regardless, I read that website and it looks like that is a very impressive and cool thing to help so many others in need like that, by utilizing the music therapists creativity, great talents and wisdom. I hope he takes your idea seriously, too. He seems like the type that would...Sure, anytime you want that copy of my latest work just pm me, and I would sent it out to your email that day..

 

[Momofone23]

No worries at all, it would be easy to miss since it's a lot of writing! Well....just got home from seeing the other show that my son is part of. Drove there with another mom who is also an OT and a friend and her son is in the show as well. I'm kind of not sure what to even say, and I know that she did this because she really thought it was in my best interest. She said she needed to be "blunt" and that she doesn't really even know who I am because all of our conversations center around my son's situation and challenges. I see her maybe on average about once every 2-3 months, and we don't really talk in between. So yes, a lot happens in those few months and since my son's situation is my full-time job, then when she asks how things are, I'm just telling her and catching her up. While I know she really meant well, I cannot begin to describe how hurtful it was. She was also trying to tell me in a pretty firm manner that this is going to be lifelong and I just need to "let go" and let things be because I have no life. Yes, it is true that I really don't have much of a life because I'm desperately trying to get my son the help and support he needs to have hope for his future. And of course I would love nothing more than to have my own life. I really don't have a circle of friends to speak of so it made me feel very alone. I'm the type that won't tell her how hurtful this was because I don't want her to feel badly. So I'll just process it and move on, but will definitely be on guard moving forward.