*Repost From Intro* Looking for answers...

[HopefulMom]

I posted this in the introduction forum- but after some advice, I decided to repost it in this section as well.

I am new to this forum, but have been searching for somewhere to ask a few questions, and maybe read a little more about what could be going on with my little guy. I am hoping there is no judgement here, as I asked some questions on another site, and was shocked to see the responses that I got, but I am determined to get to the bottom of what's going on with my baby boy so that I can help him the best way possible.
I am the mother of a wonderfully eccentric, energetic, intelligent 6 year old. He has been diagnosed with ADHD officially, but other things have been thrown into the mix recently. SPD, anxiety, OCD, disruptive behavior disorder, ODD, severe emotional disturbance. I may even be missing a few.


From the beginning, we have always seen him as "strong willed, and stubborn" and we always knew there was something different about him. The real issues began when he started kindergarten last year. We knew he was hyperactive, and they would probably have a hard time getting him to sit in one place, but naturally thought, what 5 year old boy sits at a desk and follows directions all day, 5 days a week? It was more serious than that. I won't get into the entire school experience, as that is a big, long story in itself, but it ended with my surprisingly sweet, smart, happy little boy being suspended 26 times throughout the school year, and reccommended to attend a theraputic program next year, rather than returning to "normal" public school.


There is alot to his story, and hopefully, I will have the opportunity to get more into detail later on. What has me desperate for answers, or even just an exchange in messages with someone experienced in this subject, is that I don't believe that my child has ADHD, nor do I believe that he has an entire list of issues to be labeled with. But at the same time, my son is hyperactive, he does have anxiety, he is sensative to light, sound, hot, cold, doesn't like the wind, doesn't like specific smells or materials (not just a dislike, but meltdown worthy contempt) he does not like people touching him (not to say he isn't affectionate, he's a hugger, on his own terms, but bump into him in a line, and it all breaks loose) He does show signs of OCD, he walks on lines, things need to be a certain way, he obsesses over specific subjects and items, he is very easily frustrated. He can be defiant, but there is a catch to that one. What I have always tried to explain to teachers, his case manager etc, is that his defiance stems from the other party's inability to logically explain a reason why he cannot or should not do something. He is not defiant, just for the sake of being defiant. He doesn't argue for the sake of arguing. He genuinely does not understand certain things, unless it is explained to him with extreme logic. If your reason is "because I said so, or because those are the rules" you will have a fight on your hands. Unfortunately, most people don't have the patience to deal with that, and the result is defiance and frustration. If it does not make sense to him, he will not listen.


So in short (yeah, I'm past that point) He does, in a way, show signs of all the things listed above, but I whole heartedly feel that there is something else going on, and it isn't ADHD (which he is on medication for, another story) I feel that my questions, and concerns are falling on deaf ears with everyone that is supposed to be helping with him. I'm reaching out, so if anyone would like to respond with any questions, suggestions, or personal opinions, I do welcome an open minded, and respectful discussion.

 

[zurb]

I don't know your personal situation or which country you are in, but have you considered homeschooling your son? It may actually meet your son's needs better than the other options.

 

[Peace]

Hello wonderful mother,
There is a lot here, and a lot you did not cover. Feel free to be long winded as most of us don't mind. There are many possibilities, but all that really matters is that you find a way to successfully work with your boy. You have described many of the things that we with autism experience. What I notice most is his inability to conform to an institutions routine, and his need for logic.
You have described my school experience almost to a T, minus the multiple suspensions, but we are all different. It sounds to me like your son may be under stimulated, as in he understands right away what the lesson is. Because our "One Size Fits All" education system thrives on repetition, he becomes bored and so is then distracted. He does not see the logic in continuing to repeat something so many times and cannot concentrate on something he is now beyond.
The need for logic is another thing I suffer with, as we live largely in an illogical world. His sense of ethics or morals or just plain common sense is likely very keen and he is not OK with a broad definition. He has an intricate mind, one that thinks and understands in great detail. It is to go against his beliefs to do something he does not see as right. So many things that are pushed off on our youths in the public school environment are illogical, or just plain wrong that people like us would be disturbed that someone would be insisting that we accept them. To someone who sees the world differently, truth is not always evident, and certainly clashes with what another sees. There is also NO avenue for a child in our public education system to disagree with what is taught, or even a teacher who is wrong, vague, or just not a good relayer of knowledge. Frustration then grows and at some point, screams for relief, thus the suspensions (just a guess).
Your son is possibly beyond his classmates in his ability to learn, and thus may always be moving on in his own way and time. He may also have much more of an adult mind than others his age, and thus seek mature conversation on subjects, and logic and reason to satisfy this, just as any other adult would.
I am pleased to hear that you have come here, and that you believe in your son. It will end up being the most important thing in his life. I hope you arrive at a better understanding of what is going on, and are able to help him fulfill his needs. Feel free to join in anywhere here, or ask anything. You can start a new conversation, or private message any one of us if you like. I think you are on the right track to helping him.
Good Luck.

 

[HopefulMom]

I don't know your personal situation or which country you are in, but have you considered homeschooling your son? It may actually meet your son's needs better than the other options.

I do wish that was an option for us right now, it has been discussed. We both work during the day. I work, on average, about 50-60 hours a week. Throughout Kindergarten, his teacher (who I believe really did try her best with him) said that he was beyond most of the kids in his classroom already, and she knew that she wasn't responsible for it, because he was never really there to begin. When he was there, he was all over the place, and never did any school work. He does work better 1 on 1, but even then it is hard to get his attention if you don't know him well enough. I am hopeful that this therapeutic program will be beneficial to him this coming school year. He will not have to worry about being suspended constantly, and alot of the learning takes place in a play setting. They also work with them on social skills and help them learn to transition from one thing to another.

 

[zurb]

Unless I missed it, you didn't actually say he is diagnosed as Aspergers. Has he been assessed? You say your concerns are falling on deaf ears? Are you wondering if he might be an aspie but feel no one is listening? To me it sounds like he probably is. If you are seeking more information, my favourite book to recommend is Tony Attwood's 'Complete Guide to Aspergers'.

 

[HopefulMom]

Hello wonderful mother,
There is a lot here, and a lot you did not cover. Feel free to be long winded as most of us don't mind. There are many possibilities, but all that really matters is that you find a way to successfully work with your boy. You have described many of the things that we with autism experience. What I notice most is his inability to conform to an institutions routine, and his need for logic.
You have described my school experience almost to a T, minus the multiple suspensions, but we are all different. It sounds to me like your son may be under stimulated, as in he understands right away what the lesson is. Because our "One Size Fits All" education system thrives on repetition, he becomes bored and so is then distracted. He does not see the logic in continuing to repeat something so many times and cannot concentrate on something he is now beyond.
The need for logic is another thing I suffer with, as we live largely in an illogical world. His sense of ethics or morals or just plain common sense is likely very keen and he is not OK with a broad definition. He has an intricate mind, one that thinks and understands in great detail. It is to go against his beliefs to do something he does not see as right. So many things that are pushed off on our youths in the public school environment are illogical, or just plain wrong that people like us would be disturbed that someone would be insisting that we accept them. To someone who sees the world differently, truth is not always evident, and certainly clashes with what another sees. There is also NO avenue for a child in our public education system to disagree with what is taught, or even a teacher who is wrong, vague, or just not a good relayer of knowledge. Frustration then grows and at some point, screams for relief, thus the suspensions (just a guess).
Your son is possibly beyond his classmates in his ability to learn, and thus may always be moving on in his own way and time. He may also have much more of an adult mind than others his age, and thus seek mature conversation on subjects, and logic and reason to satisfy this, just as any other adult would.
I am pleased to hear that you have come here, and that you believe in your son. It will end up being the most important thing in his life. I hope you arrive at a better understanding of what is going on, and are able to help him fulfill his needs. Feel free to join in anywhere here, or ask anything. You can start a new conversation, or private message any one of us if you like. I think you are on the right track to helping him.
Good Luck.

My sons need for logic plays a major role in his behavior. A good example of this was when he was being evaluated for this therapeutic school, to see if he would be voted into it next year or not. (he was 5 at the time) The woman was asking alot of questions about how his school year went, and some of the things he was having issues with. At this point, he was not actually being evaluated, so he was to keep himself busy, while we answered the questions.

He saw a dry erase board in the corner and politely asked if he could draw on it. She told him yes, but to only use the black marker that was attached to the board. There was a bag full of different markers next to the board, she asked him not to touch those because some of them were permanent markers and she didn't want him to accidentally use them on that board. He shrugged it off and said that black was all he needed right now anyway. He sat in the corner and giggled while he was drawing, and I continued to answer questions. She asked if he had any learning disabilities, and I said no, he doesn't. His learning style is different, but I would never consider it a disability. He is a very visual learner.

I proceeded to tell her how smart he was, and in perfect timing, he walked over with his drawing and told the woman, I have a surprise for you! He showed her his drawing, which was a giant black blob in the middle of the board. She just kind of looked at me. I'm sitting there with a big smile on my face thinking, okay...wait for it. She says in her best almost baby talking voice, "what do you have there for me sweetie"? He says, "This is a black hole, the gravity is so strong that nothing can escape it. It basically eats everything that comes close to it. I need to draw stars to show you what I'm talking about. I need a red marker. There are red markers in that bag over there." She kept telling him no, that she didn't want him using those markers for the reason that she stated earlier. They were mixed up and she didn't want him mistakenly using permanent markers on a dry erase board. This was not a logical reason why he couldn't use those markers. While she was calmly pleading with him to listen and put the markers down, he had already separated them into 2 piles. He said "Look, these markers say EXPO, and that board says EXPO, so I know that these markers go to that board, okay? I just know that. I will only use these markers with that board and it will be fine, it will."

At the end of the evaluation for the referral it was time to put everything away. She decided to help, to speed the process. I told her that in doing so, she was only going to make it twice as long, but she didn't listen. She didn't put the markers up in the order that he took them out. That resulted in the entire bag being dumped again, and them being put back in the same order to satisfy him. That black marker had to go back on the board where it came from. He was pretty upset about that. He has even stumped me a few times, where I fail to actually find a logical reason why he can't do something and all I can do is laugh and say, "You got me, kid, go for it!"

Small talk doesn't really exist with him. It never has. I have always struggled to have small talk conversations with him. If I ask him what he did today, when I pick him up, he stares out the window and says, "I dunno." or "I don't remember." I get that answer for alot of things. The way his mind works absolutely fascinates me. I once had to go into very deep detail of mechanics to get him to understand that a quarter, and 25 pennies is not created equal in the eyes of a confusing bubble gum machine.

Last night, he was up late because I decided to observe the difference of his reaction to conversation regarding "chatting about his day" vs something that he is obsessively interested in. The conversation about his day lasted an entire 2 minutes with alot of silence and ended in him completely ignoring me. So I changed the subject. I started talking about space. I instantly had his full attention. We started talking about galaxies, black holes, what happens when 2 galaxies merge and 2 supermassive black holes collide. Why one black hole has stronger gravity than the other. From there we went on to talking about mass, and it's effect on gravitational force. By the end of this conversation, he had a full understanding of how mass affects gravitational force, and was conducting his own experiments to show me his understanding.

This is how I connect with him. It is very difficult sometimes to not just be able to sit down with him and talk about how he is feeling, or what he wants to be when he grows up. The conversations that people see as "typical" with their children, has never been "typical" for mine. I can occasionally get him to talk about his feelings, only because in a way I trick him. I turn it into a game, but only get answers in the form of "true or false" but it is better than nothing. He is always very honest in his answers and I wouldn't change him for anything in the world, I just wish the rest of the world would try to understand and see him the way that I do.

 

[HopefulMom]

I am not a parent, so I cannot offer any advice or answers. However, I wanted to comment on a few things you shared. You've done a phenomenal job, because you can see and understand your son's difficulties. When I was his age (almost 50 years ago), I had the very same challenges. The educators' response back then was, "He won't apply himself." I could not clearly convey to them what my problem was. My mother's response always involved hitting.

Zurb's suggestion may be something to seriously consider. Another thing is a "special school" (I dislike that term) designed to address the specific challenges that your son has. I wish they'd had such opportunities fifty years ago when I first entered school; I'm sure my life would have been much better.

I thank you. I myself had alot of issues in school because I wasn't conforming to what was expected of me. Regardless of my grades, I was thrown in special ed at a young age because I refused to participate in class. I sat in a corner with my books and learned on my own, paying very little attention to what was going on around me. I have always had a harder time learning when someone talks directly to me. I have always been a reader, and this way was easier for me. The therapeutic school that he will be attending for 1st grade is designed to help him alot more 1 on 1 and I'm hopeful that will help with alot of the issues we were having throughout his first school year. My son was never an aggressive child, until he started school. I do feel that has alot to do with his anger and frustration.

 

[HopefulMom]

Unless I missed it, you didn't actually say he is diagnosed as Aspergers. Has he been assessed? You say your concerns are falling on deaf ears? Are you wondering if he might be an aspie but feel no one is listening? To me it sounds like he probably is. If you are seeking more information, my favourite book to recommend is Tony Attwood's 'Complete Guide to Aspergers'.

He has not been diagnosed with Aspergers. I live in a fairly small town where from what it seems, everyone is shrugging everything off and not really wanting to deal with it. He was diagnosed with ADHD and has been taking medication for ADHD. I am not confident in his diagnosis. He is hyperactive, fidgety, impulsive, at times has a hard time concentrating, I do see all of those things in him, but in my heart, I know that there is more to it than ADHD. I do want to get to the bottom of what is going on with him, not just for myself and him, but I feel a correct diagnosis will help everyone understand him better, and be able to interact with him accordingly.

He was discharged from the hospital at 4lbs. I think that everyone was more concerned with how he was physically developing, that no one really paid attention to everything else. He cried alot as a baby, for hours and hours, every night, almost like clockwork. That was dismissed as colic. He drooled exessively, he still does. He never really responded to his name, very little eye contact, and when he finally started smiling, it always looked fake. It looks more like an imitation of what he thinks he is supposed to do, not actually a person display of emotion. He was language delayed. At 3 years old, he sounded more like a 1 year old. Everything was dismissed as developementally delayed due to being premature. The resources in this area are minimal, so everything we have done for him up until now, has had to be done with alot of patience and in the comfort of his own home.

 

[Peace]

He is doing amazingly well. What other 5 year old even knows what a universe is, or a black hole, or gravity? He is way beyond his peers already, and if given the opportunity to continue learning about his "Special Interest" will apply himself and excel. He will likely never be able to talk about his feelings because he is further from them than most people, and he has a much harder time understanding them.
The marker episode was classic. If you consider that he sees himself as an equal to adults (as their is no logical reason not to), than you can understand why it did not seem right that he would be restricted from using all of the "Tools" available to do the best job that he could. Very focused, very detailed, and logic displaces emotion. Until that is, when he becomes upset.
Upset is a feeling that he experiences. It sounds as though he does not have the tools to manage his feeling at this point. You could work with him to help him develop these. He first would need to start identifying what he is bothered by, and what feelings he experiences at this point (The "Triggers"). You could then develop ways to channel this energy appropriately. Many of us have developed tools (Ways) to manage them. Some leave, some become sarcastic, some fight back (inappropriate), and some of us can only break down and lock up. Hopefully you can achieve success here. Maybe you could talk about his feelings as if they were a cosmic event, like comparing his getting angry to a super nova, or a black hole. He is a deep thinker so combining this with his special interest will allow him to make sense of this all, and also allow him to express what he is likely not able to in any different format.
These are just ideas from a kid that sounds a lot like your son, but has had a few more years to work things out. I hope that any of this helps. Thank you for keeping us updated, I love hearing about an amazing mind working at such a young age. Your son certainly has a gift, and given the chance, will continue to change the world around him.