B
Bluemoon
Guest
Hello Everyone.
I had a good pregnancy, took very good care of myself and did what I believed to be all the right things. No smoking, alcohol, caffine, aspertaime, etc. I was hypervigilent.
However, I was also under huge stress because of things my husband was doing at the time.
My son showed his difficult side at 48 hours old. He began to cry and seem very uncomfortable and didn't stop for at least 6 months.
Never ate a full meal, never slept more than very short periods at a time.
He was inconsolable.
doctors. had no suggestions and colic remedies did nothing to help. E (son) was...soooo different. Cried 90% of the time, very hard to interact with or distract, very strong willed, impossible to comfort.
E was well within normal range in terms of sitting up, cruising, climbing, walking, etc. However, he was speech delayed. He recieved therapy for this and is OK with speech today. Well, he can talk fine. Subject choice is something else.
Of note: I once heard the speech therapist, a lovely young woman, affectionately refer to my son as "a little control freak".
Socially he was...there was just nothing there. No interest AT ALL.
He also fought me about many things like getting in his carseat, getting dressed, diaper changes...
I asked for help with his behaviors, was told to give him a piece of candy everytime he didn't fight me by the "professional" early intervention sent. I admit, that didn't go over well with me for SO many reasons. Besides, E didn't care about the rewards, or the potential for punishment. It had no effect.
Friend and relatives with easy child gave me the hairy eyeball and assumed, out loud, that I was somehow to blame.
Husband went awol (with his young girlfriend) very early on. He was NEVER there.
Lots of drama with his dysfunctional family...I ended up fostering his niece and nephew for 6 months, finally called that quits because CPS insisted on putting me in charge of their still actively drug addicted parents, too. They were putting all the children, including mine, at risk. I couldn't have them comming around.
When I agreed to take the kids they were supposed to be sent away for a year. 30 days later....I tried, I really did.
Divorced, moved, put E in daycare, then pre-K, partly to try to socialize him and partly so I could breath. I couldn't even go to the bathroom nevermind the store.
He fought like a tiger not to stay when I dropped him off and fought equally hard to stay when I picked him up. Every single time. For months. Eventually I lost the strength to take him anymore.
He made no friends. He discovered video games. And screwdrivers. Any toy that wasn't a video game, he would dissassemble into a million tiny pieces.
Dad visited sporatically.
Tornado hit, we moved again. Exhausted and desperate for help, I married again.
Big mistake, lasted less than 2 years. Good news is E never bonded with the guy at all....but the guy left us broke. I went back to work, had to take E with me.
This went surpriseingly well, but only because E had a gameboy by then.
E started school (K) and I requested my first IEP evaluation. He was denied. Everyone said he was perfectly normal (officially) and they sent me to parenting clesses and told me to make a chore chart. So I did.
The parenting classes taught me nothing I didn't already know or hadn't already tried and E was completely unimpressed with the whole chore chart system. He couldn't have cared less about rewards.
The only punishment that had any useful effect was to shut him in his room and I had to lock his door to keep him in there. Putting him a corner (or anywhere he could physically leave) for a time out was impossible.
Any effort to control him resulted in an unbelieveable meltdown. So did putting him in his room, but it also stopped him from running around wild. It restrained him. Limited him. Mostly, it was the one thing he didn't like badly enough to convince him to change his behavior enough to avoid it. But it only worked when you were at home.
These days he just goes out the window. He will break it if he must.
Anyway, while the teachers wouldn't agree he needed an IEP, they still sent home notes almost daily.
"E is hiding under his desk and won't come out." "E has a fit if another child comes within a foot of him." "E won't do his work, he ignores me."
I got calls, too. "E is having an uncontrollable meltdown - come remove him NOW!"
Homework was (is) a nightmare that defies description.
This went on till 3rd grade.
I tried to find counceling for E. We were put on a waiting list. 6 months of paying to wait later, I gave up. E seemed better. That's cause school was out for the summer. Our world shrunk to the 4 walls around us.
3rd grade I found a savior. A principle at another school had become aware of E. She gave me a job driving for her and allowed me to transfer him there. She set up a new IEP evaluation. He was determined to be learning disabled. He got a Special Education teacher to help him and some small adjustments to his routine.
Trouble didn't stop there, though.
I had been trying to get E evaluated for other disorders (for years), but in VA the schools do not do that (which I didn't know at first). However, doctors. and such would not do it unless the school would back you up. It was very confusing.
The principle was working with me, but before we got very far, she died, suddenly, right before Christmas.
I was back to square one. The rest of the year was like the ones before. I was always having to take E out of there and he was getting worse. He began assaulting me.
This year, I went on a rampage. Actually, I started the end of last year. I rattled cages, I made alot of noise. I made some threats. I asked for help (ideas) from virtually every single person who crossed my path.
I found out that there was a person in the school system, a well kept secret apparently, who was there to advocate specifically for children like my E. I hunted that guy down. The school claimed no knowledge of his existance.
He was VERY real, though.
I learned that the program he works for gets referals from every single county that surrounds us (through the schools) but not ONE referal from us. Ever.
I think that's why they put him in our schools, but it was a fairly recent move...and not a welcome one, apparently.
My blood boiled. I became a force to be reckoned with. I got an official advocate for E which was key. Parent referals are not respected at all here, as I had already discovered.
I went to my first meeting and the wheels began to grind forward...slowly.
Summer went by meeting requirements.
Then I took a video of my son having a meltdown. I marched into the place and showed that to his advocate.
She called in her boss and they stepped on the gas. Big time.
Now E has had his first meeting with the neuro-psychiatric (100 miles away). The Dr. has determined he has ODD. It doesn't end there.
He will be seeing an occupational therapist for an evaluation and will also be tested for Autism Spectrum Disorders (ASD) and ADHD-inattentive type (I don't know why they don't just say ADD) in the next week.
We are getting lots of attention all of a sudden.
All the professionals working with him are saying the same thing. They agree with the ODD but feel there is MUCH more than that going on with E.
They have all said (it's bizarre) that they have never met a kid like E. They are completely baffeled by him. For the record, they are not comparing notes here, they don't even know each other, they each came to this conclusion on their own.
All this said, my son is a very wonderful and sweet little boy. He is affectionate. He is scary smart...another thing that all the professionals comment on...yet his IQ tested low normal.
Now, I don't care what his IQ is, I love him no matter what, but the professionals all said, "All that means is that E didn't want to take the test".
So, I am waiting, still, but we are finally getting somewhere. Soon (maybe, lol) someone will be able to help me understand my son. Help me learn how to motivate him, help him, have a loving relationship devoid of war with him.
Thank you for reading, I don't know how to make this story any shorter.
I had a good pregnancy, took very good care of myself and did what I believed to be all the right things. No smoking, alcohol, caffine, aspertaime, etc. I was hypervigilent.
However, I was also under huge stress because of things my husband was doing at the time.
My son showed his difficult side at 48 hours old. He began to cry and seem very uncomfortable and didn't stop for at least 6 months.
Never ate a full meal, never slept more than very short periods at a time.
He was inconsolable.
doctors. had no suggestions and colic remedies did nothing to help. E (son) was...soooo different. Cried 90% of the time, very hard to interact with or distract, very strong willed, impossible to comfort.
E was well within normal range in terms of sitting up, cruising, climbing, walking, etc. However, he was speech delayed. He recieved therapy for this and is OK with speech today. Well, he can talk fine. Subject choice is something else.
Of note: I once heard the speech therapist, a lovely young woman, affectionately refer to my son as "a little control freak".
Socially he was...there was just nothing there. No interest AT ALL.
He also fought me about many things like getting in his carseat, getting dressed, diaper changes...
I asked for help with his behaviors, was told to give him a piece of candy everytime he didn't fight me by the "professional" early intervention sent. I admit, that didn't go over well with me for SO many reasons. Besides, E didn't care about the rewards, or the potential for punishment. It had no effect.
Friend and relatives with easy child gave me the hairy eyeball and assumed, out loud, that I was somehow to blame.
Husband went awol (with his young girlfriend) very early on. He was NEVER there.
Lots of drama with his dysfunctional family...I ended up fostering his niece and nephew for 6 months, finally called that quits because CPS insisted on putting me in charge of their still actively drug addicted parents, too. They were putting all the children, including mine, at risk. I couldn't have them comming around.
When I agreed to take the kids they were supposed to be sent away for a year. 30 days later....I tried, I really did.
Divorced, moved, put E in daycare, then pre-K, partly to try to socialize him and partly so I could breath. I couldn't even go to the bathroom nevermind the store.
He fought like a tiger not to stay when I dropped him off and fought equally hard to stay when I picked him up. Every single time. For months. Eventually I lost the strength to take him anymore.
He made no friends. He discovered video games. And screwdrivers. Any toy that wasn't a video game, he would dissassemble into a million tiny pieces.
Dad visited sporatically.
Tornado hit, we moved again. Exhausted and desperate for help, I married again.
Big mistake, lasted less than 2 years. Good news is E never bonded with the guy at all....but the guy left us broke. I went back to work, had to take E with me.
This went surpriseingly well, but only because E had a gameboy by then.
E started school (K) and I requested my first IEP evaluation. He was denied. Everyone said he was perfectly normal (officially) and they sent me to parenting clesses and told me to make a chore chart. So I did.
The parenting classes taught me nothing I didn't already know or hadn't already tried and E was completely unimpressed with the whole chore chart system. He couldn't have cared less about rewards.
The only punishment that had any useful effect was to shut him in his room and I had to lock his door to keep him in there. Putting him a corner (or anywhere he could physically leave) for a time out was impossible.
Any effort to control him resulted in an unbelieveable meltdown. So did putting him in his room, but it also stopped him from running around wild. It restrained him. Limited him. Mostly, it was the one thing he didn't like badly enough to convince him to change his behavior enough to avoid it. But it only worked when you were at home.
These days he just goes out the window. He will break it if he must.
Anyway, while the teachers wouldn't agree he needed an IEP, they still sent home notes almost daily.
"E is hiding under his desk and won't come out." "E has a fit if another child comes within a foot of him." "E won't do his work, he ignores me."
I got calls, too. "E is having an uncontrollable meltdown - come remove him NOW!"
Homework was (is) a nightmare that defies description.
This went on till 3rd grade.
I tried to find counceling for E. We were put on a waiting list. 6 months of paying to wait later, I gave up. E seemed better. That's cause school was out for the summer. Our world shrunk to the 4 walls around us.
3rd grade I found a savior. A principle at another school had become aware of E. She gave me a job driving for her and allowed me to transfer him there. She set up a new IEP evaluation. He was determined to be learning disabled. He got a Special Education teacher to help him and some small adjustments to his routine.
Trouble didn't stop there, though.
I had been trying to get E evaluated for other disorders (for years), but in VA the schools do not do that (which I didn't know at first). However, doctors. and such would not do it unless the school would back you up. It was very confusing.
The principle was working with me, but before we got very far, she died, suddenly, right before Christmas.
I was back to square one. The rest of the year was like the ones before. I was always having to take E out of there and he was getting worse. He began assaulting me.
This year, I went on a rampage. Actually, I started the end of last year. I rattled cages, I made alot of noise. I made some threats. I asked for help (ideas) from virtually every single person who crossed my path.
I found out that there was a person in the school system, a well kept secret apparently, who was there to advocate specifically for children like my E. I hunted that guy down. The school claimed no knowledge of his existance.
He was VERY real, though.
I learned that the program he works for gets referals from every single county that surrounds us (through the schools) but not ONE referal from us. Ever.
I think that's why they put him in our schools, but it was a fairly recent move...and not a welcome one, apparently.
My blood boiled. I became a force to be reckoned with. I got an official advocate for E which was key. Parent referals are not respected at all here, as I had already discovered.
I went to my first meeting and the wheels began to grind forward...slowly.
Summer went by meeting requirements.
Then I took a video of my son having a meltdown. I marched into the place and showed that to his advocate.
She called in her boss and they stepped on the gas. Big time.
Now E has had his first meeting with the neuro-psychiatric (100 miles away). The Dr. has determined he has ODD. It doesn't end there.
He will be seeing an occupational therapist for an evaluation and will also be tested for Autism Spectrum Disorders (ASD) and ADHD-inattentive type (I don't know why they don't just say ADD) in the next week.
We are getting lots of attention all of a sudden.
All the professionals working with him are saying the same thing. They agree with the ODD but feel there is MUCH more than that going on with E.
They have all said (it's bizarre) that they have never met a kid like E. They are completely baffeled by him. For the record, they are not comparing notes here, they don't even know each other, they each came to this conclusion on their own.
All this said, my son is a very wonderful and sweet little boy. He is affectionate. He is scary smart...another thing that all the professionals comment on...yet his IQ tested low normal.
Now, I don't care what his IQ is, I love him no matter what, but the professionals all said, "All that means is that E didn't want to take the test".
So, I am waiting, still, but we are finally getting somewhere. Soon (maybe, lol) someone will be able to help me understand my son. Help me learn how to motivate him, help him, have a loving relationship devoid of war with him.
Thank you for reading, I don't know how to make this story any shorter.