Autism / Autism Spectrum Support Group
Autism is classified as a neurodevelopmental disorder which manifests itself in markedly abnormal social interaction, communication ability, patterns of interests, and patterns of behavior. Although the specific etiology of autism is unknown, many researchers suspect that autism results from genetically mediated vulnerabilities to environmental triggers.
Hello, my name is Chez. I am a 32 year old divorced single mom to an almost 8 year old boy. His dad is a truck driver and only home for a week at a time maybe 4 times a year. We live with my mother because even though I've had the same full time job for 13 years I still can't make ends meet on my own. My aunt recently passed away and now my 21 year old cousin with Aspbergers also lives with us.
There were complications at birth. The doctor delivering wasn't my doctor and wanted me to have an epidural, but I refused. When I finally asked for some IV meds, his wirds weren "gonna snow you." He gave me the maximum amount of stadol allowed. I became completely out of it and my son's heart rate dropped very low several times as the nurses kept turning me on my side as we waited for the doctor. When he did come, he decid we d we had to get him out even though I wasn't fully dilated. So he did an episiotomy, used forceps, and a vacuum. He had to ask the nurses how touse the vacuum as there were different kinds. My son had his cord wrapped around his neck and head to be resuscitated. His head was swollen and black with fluid on the brain. He had trouble breathing on his own for a while and had seizures the first day. No one really ever said what caused the seizures. Three days later we went home and he was a very happy baby who did almost everything on time. He was late with potty training and didn't talk a lot till about 3. He started taking in complete sentences almost overnight.
At 3 we noticed that he seemed almost careless and hyper. I brought up toour gp who tools me just to wait till he entered school and the school would address it.
In kindergarten, he had an older teacher who was not friendly and I didn't much like. He would tell me how mean she was, but I just thought she was strict. Halfway thru the year he threatened to kill her and we were referred to school based mental health. His therapist diagnosed him ADHD and ODD. He was put on focalin XR. Things seemed to get better until the summer.
I was told that he had to attend summer group to continue therapy. From the 1st day, he hated going. They met in a gym at a local school and hated the loud noise and new people. He became very anxious and they had to pry him off of me in the mornings. That's when Autism was 1st mentioned because he would line the chairs up to calm himself. I hated leaving him, but they told me it needed to be done.
The 1st day of 1st grade, I gotgot called to come pick him up because he was being violent. He couldn't go back until we set up a 504 and they put him in a CPU classroom for behavior problems. It was then I learned that the counselors had been physically restraining him all summer and on the 1st day of school. I insisted that they not do that, but call me 1st. We walked down to Mr. Joe's room and when I went to leave, he freaked and actually picked up a chair and threw it. I had never seen him like that. From then, till mid second grade school has been going well. I only took him to summer group once a week this past year because of what had happened before and he started second grade in a regular classroom.
As this year has progressed, I have heard the words, "high functioning au r ism" a lot. I was told that new symptoms can start to show up around
7 or so. My son has developed sensory issues such as he only ways certain foods (which actually caused him to loose weight), will only wear certain clothes, he had to wear a belt with super tight pants or he thinks they are falling off, he has to have high tops that are laced super tight or he thinks they are falling off, and he chews stuff like crazy -his wiimotes, toys, clothes, and the skin of of his knuckles and fingers. He never wants to throw anything away -gum wrappers, packaging, old clothes, etc. I sneak stuff out slowly...lol He hates any place new and any change in routine results in a meltdown. He no longer talks to people he doesn't recognize. He loves playing with his friends/cousins, but is just as happy alone and doesn't seem to notice when he is being picked on. He had trouble in the lunchroom due to the noise. We tried sports, but a no go. He says repetive nonsensical phrases that can sometimes be embarrassing...lol
So, over Christmas break there was an incident at his daycare. The morning teacher ok'd his toys, but another teacher later took them away. He freaked out and started hitting and kicking when staff approached. Onec teacher had just found out she was pregnant. The owner happened to be there that day and she got very upset and intervened. I was told that he was de-escalating until she got involved. He then became very violent with her. She sat on him to keep him from trying to run out of the building. He told me that she was really mean and she said he stopped when she threatened to video tape him and show me. She was very angry and expressed that if she didn't believe that he couldn't control it -she would have kicked him out.
From then, at school and at daycare -it just snowballed. One incident after another. He did not want me to leave him at the school. His teacher stayed having to meet me at the door. My son would start saying his tummy hurt all the time. He would kick, hit, and cuss at teachers and staff. Once he got calmed down, the day would go well -until he stopped being able to calm down. So then the school cops got involved. My son made the statenent to the principal in front of a cop that he wanted to kill her and he bit her. My son was put on the floor face down, cuffed and taken away to juvy.
He has been to 2 different hospital's for assessment and is now in a place for therapy for 6 to 8 months. #1 said they think it's autism and #2 says mood disorder and put him on adult meds. The juvy officer had tools me that if I don't agree to her suggestions, she'll get them court ordered -which they have been. I've been told that homeschooling isn't an option. I can't even get info from where he's at because the ID # they gave me is incorrect!
I wanted to get him tested for autism a while back, but his therapist is against it because them she can't treat him if he is. The school is now for it because the woman who works with the autistic kids overheard the last episode and wants to test him.
Pretty much everyone involved knows nothing or tells me something different. I'm acting okay and doing what I should, but on the inside -I feel like it's only a matter of time till I blow. It'd be easier if my son acted like this at home or with others. My family/friends are shocked that my son would have meltdowns like that because he's so good around them. It only happens at school when his anxiety comes out.
Any advice from people who have been here would be appreciated. Sorry so long, but I'm about in tears here and most people just don't understand.
God bless.
There were complications at birth. The doctor delivering wasn't my doctor and wanted me to have an epidural, but I refused. When I finally asked for some IV meds, his wirds weren "gonna snow you." He gave me the maximum amount of stadol allowed. I became completely out of it and my son's heart rate dropped very low several times as the nurses kept turning me on my side as we waited for the doctor. When he did come, he decid we d we had to get him out even though I wasn't fully dilated. So he did an episiotomy, used forceps, and a vacuum. He had to ask the nurses how touse the vacuum as there were different kinds. My son had his cord wrapped around his neck and head to be resuscitated. His head was swollen and black with fluid on the brain. He had trouble breathing on his own for a while and had seizures the first day. No one really ever said what caused the seizures. Three days later we went home and he was a very happy baby who did almost everything on time. He was late with potty training and didn't talk a lot till about 3. He started taking in complete sentences almost overnight.
At 3 we noticed that he seemed almost careless and hyper. I brought up toour gp who tools me just to wait till he entered school and the school would address it.
In kindergarten, he had an older teacher who was not friendly and I didn't much like. He would tell me how mean she was, but I just thought she was strict. Halfway thru the year he threatened to kill her and we were referred to school based mental health. His therapist diagnosed him ADHD and ODD. He was put on focalin XR. Things seemed to get better until the summer.
I was told that he had to attend summer group to continue therapy. From the 1st day, he hated going. They met in a gym at a local school and hated the loud noise and new people. He became very anxious and they had to pry him off of me in the mornings. That's when Autism was 1st mentioned because he would line the chairs up to calm himself. I hated leaving him, but they told me it needed to be done.
The 1st day of 1st grade, I gotgot called to come pick him up because he was being violent. He couldn't go back until we set up a 504 and they put him in a CPU classroom for behavior problems. It was then I learned that the counselors had been physically restraining him all summer and on the 1st day of school. I insisted that they not do that, but call me 1st. We walked down to Mr. Joe's room and when I went to leave, he freaked and actually picked up a chair and threw it. I had never seen him like that. From then, till mid second grade school has been going well. I only took him to summer group once a week this past year because of what had happened before and he started second grade in a regular classroom.
As this year has progressed, I have heard the words, "high functioning au r ism" a lot. I was told that new symptoms can start to show up around
7 or so. My son has developed sensory issues such as he only ways certain foods (which actually caused him to loose weight), will only wear certain clothes, he had to wear a belt with super tight pants or he thinks they are falling off, he has to have high tops that are laced super tight or he thinks they are falling off, and he chews stuff like crazy -his wiimotes, toys, clothes, and the skin of of his knuckles and fingers. He never wants to throw anything away -gum wrappers, packaging, old clothes, etc. I sneak stuff out slowly...lol He hates any place new and any change in routine results in a meltdown. He no longer talks to people he doesn't recognize. He loves playing with his friends/cousins, but is just as happy alone and doesn't seem to notice when he is being picked on. He had trouble in the lunchroom due to the noise. We tried sports, but a no go. He says repetive nonsensical phrases that can sometimes be embarrassing...lol
So, over Christmas break there was an incident at his daycare. The morning teacher ok'd his toys, but another teacher later took them away. He freaked out and started hitting and kicking when staff approached. Onec teacher had just found out she was pregnant. The owner happened to be there that day and she got very upset and intervened. I was told that he was de-escalating until she got involved. He then became very violent with her. She sat on him to keep him from trying to run out of the building. He told me that she was really mean and she said he stopped when she threatened to video tape him and show me. She was very angry and expressed that if she didn't believe that he couldn't control it -she would have kicked him out.
From then, at school and at daycare -it just snowballed. One incident after another. He did not want me to leave him at the school. His teacher stayed having to meet me at the door. My son would start saying his tummy hurt all the time. He would kick, hit, and cuss at teachers and staff. Once he got calmed down, the day would go well -until he stopped being able to calm down. So then the school cops got involved. My son made the statenent to the principal in front of a cop that he wanted to kill her and he bit her. My son was put on the floor face down, cuffed and taken away to juvy.
He has been to 2 different hospital's for assessment and is now in a place for therapy for 6 to 8 months. #1 said they think it's autism and #2 says mood disorder and put him on adult meds. The juvy officer had tools me that if I don't agree to her suggestions, she'll get them court ordered -which they have been. I've been told that homeschooling isn't an option. I can't even get info from where he's at because the ID # they gave me is incorrect!
I wanted to get him tested for autism a while back, but his therapist is against it because them she can't treat him if he is. The school is now for it because the woman who works with the autistic kids overheard the last episode and wants to test him.
Pretty much everyone involved knows nothing or tells me something different. I'm acting okay and doing what I should, but on the inside -I feel like it's only a matter of time till I blow. It'd be easier if my son acted like this at home or with others. My family/friends are shocked that my son would have meltdowns like that because he's so good around them. It only happens at school when his anxiety comes out.
Any advice from people who have been here would be appreciated. Sorry so long, but I'm about in tears here and most people just don't understand.
God bless.
Sounds like your little guy is a lot like mine use to be. There were many days after he'd hit me and bite me, i'd just want to throw in the towel and stop trying, but we are moms and who else is going to fight for our guys?
With a lot of hard work, things can get better. If you let things go, things can get worse. I've seen both from friends with kids like my son. We started in the same boat, and i've seen both things happen.
First things first, get the label (diagnosis) You get way more services if your son has the label "autism" Some people don't want it, but honestly, the studies have shown that the more you do in the beginning, the better chance your child has of succeeding.
Everyone is going to have an opinion, and it's up to you to choose. Don't just trust the "experts." EVERY CHILD IS DIFFERENT and you are the expert on your son, not them. If you think the meds are not helping, take him off. Honestly, that's why they call it the "practice of medicine."
The next part is the hardest and that's to figure out why your son is doing what he did. My son had tantrums and rages, but never did he without a good reason. (At least to him it was a good reason.) He was so tired of not being understood that he'd just explode. Sometimes he'd say he wanted to murder me, but only because he wanted me to now how serious it was and that he was asking for help IMMEDIATELY. Our guys do and say a lot of things that they don't necessarily mean, but the emotion and intensity behind the words are what they mean.
Unfortunately, it is very rare to find a school, therapists, anyone who understands that last part about our guys. In a regular school system, there are 1 thing they always take absolutely seriously, and that's causing harm to yourself or others. They have to. anyway, dealing with the school is a whole other mess. First just get you guy diagnosed, and find the right team of people to help him. Go with the therapists you can trust, talk to and have your son's best interest. If you don't feel comfortable with them, find someone else.
Hope that helps a bit. Also, just so you know, my son has made huge strides, and doesn't hit, rage, or have any more physical issues. He might swear every once and awhile, but I'll take it. There is hope so keep fighting the fight!
Good Luck.
Thanks for your reply. Just getting a response makes me feel a bit better.
I think the school is my son's trigger. He doesn't hit or bite me or anyone. He doesn't cuss at me or anyone. He has had 2 major meltdowns at home. The 1st was a day he came home from his dad's. He does not like going to his dad's and always has trouble the 1st day or 2 back. That time he was rippling his clothes and screaming bloody murder. I had to get a hold of him and just hold on to him. Afterwards,he apologized and said he felt better. The 2nd time was the 2nd day back to school from spring break. He had been home from dad's for 2 days. He was kicking and screaming, but I just stood back. He was screaming also. When I finally approached him he stood in front of the doorway. To get thru I pushed him out of the way and he fell. This made him very angry and he threw a pillow at me which caught me in the eye. At that point, I could not see. His dad was still in town for 1 more day so I called him and he came over and we are able to take him to school with his dad threatening to come up to the school if there were any problems.
His dad loves him, but is very gruff. He doesn't believe that our son has any problems other than he thinks the school is causing this.
The only place my son is cussing, kicking hitting others, biting people, threatening to kill anyone, and banging his head on the floor is at school or the daycare he goes to after school. At the daycare it is hiring/kicking and cussing. He usually isn't trying to hurt other people, but when they approach him dieting a meltdown -they get hurt.
My family and c friends have seen him being socially awkward and seen his sensory issues(etc.), but none have seen him violent. They just can't grasp that he's been sent away because they all think hhe's so well behaved.
If he had no incidents where he's at then we'll know it's the school. I think that he had lost trust in some of the people at the school and daycare. The 2 hospitals that had him for assessment both agreed that he has extreme anxiety and suggested a smaller school. I am looking into a private Christian School. It is the only other school in our district.
As for therapists, my son is on state insurance and due to state law -only mental health therapists can treat autistic kids. The only therapists in our area are behavioral therapists. Or therapist says that is why she doesn't want him labeled autistic. I am kinda angry though because I feel that if I had got him tested before -maybe this would have been handled differently. Now that she knows that I plan to get him tested and the school is finally on board, she had told me that we can go to court and try to get her treatment court ordered since there are no mental therapists here. She treats some autistic kids this way already.
That is hard too -during this whole thing I get told something different every time. I also get misinformation. I'm starting to wonder if he's actually getting help. I can't talk to him for 2 to 3 weeks and can't see him for 30 days. He's 4 and a half hrs away and can b only come home for the weekend every 3 weeks based on behavior. Of course I want him to get help, but I feel like I being given no choices. We know his juvy officer and I think she truly wants to help him, but I am being told I have a choice -but if I don't follow their recommendations that it will be court ordered.
The last place doped him up and he was sleeping almost all day. I cut his meds in half until we saw or doc who took him off of one. He's currently on meds for bipolar disorder.
I feel really alone right now. The best thing I have is my faith, but it's hard. I know God will take care of us, but I am near tears 90% of the time right now. His birthday is coming up -he'll be 8 and I can't even see him :(
Anywho, thanks and God bless.
Yes, totally sucks that you can't be with him on his birthday. Sounds like he has a lot of issues with his dad and school. Does he understand the concept of time? In the old days, I found it really helpful to prepare my son for at least a week before he had to go do something he wasn't really fond of, like there are 7 more days. Then you'll be with dad for 3 days, and then come home. If he doesn't really understand time, like my guy, then you tell him, he has to go to bed 3 times. Then help him mark the calendar, so he can anticipate when it's coming, how long it will be and then talk about what you will do when he gets to come home. I understand Dad doesn't want to think anything is wrong with his son, but his denial will hurt his son, so do the best you can to convey the last part.
As far as school is concerned, I don't know many kids on the spectrum that enjoy school, but there might be other triggers. If he has sensory issues, maybe he just needs to jump up and down for a bit to get some of his energy out. Or, maybe he's trying to get in trouble, so he can go home. (My son did that so he could get suspended 5 times in one year, just so he could come home.) Every state is different, I'm in California, so I had to study up on the IEP's (individual Education Plan) here. IF you request something they can not deny you, but if they don't mention it, and you don't mention it, then they don't have to do it. Does that suck? You bet. Here is the website I used to help me deal with the school and how to ask for the things he needed.
http://www.wrightslaw.com
You are not alone and there are many of us that have had to fight and fight hard for our kids. Is it worth yet? Heck yes.
When your son has a meltdown, the first thing to do is to calm him down. After all the dust settles, you can talk about what happened. I use to have to sit behind my son and restrain him. I'd always tell him I had to hold him because I didn't want him to hurt himself or anyone else. Once he calmed down, I'd let him go and then ask what happened and why? That way I can help him, but I didn't understand why he was upset. It takes a long time to go through this, but it gets easier. After he stopped needing me to restrain him, I'd just tell him to sit and take deep breathes (Sniff the flowers, blow out the candles, repeat) I'd stay out of hitting/kicking/spitting range, but just stay in the same room with him, to let him know that I wasn't going to dessert him when he was super upset, but he needed to calm down. Then you talk about what happened. My son could never answer the questions directly, so I had to give multiple choice answers and he could say yes or no until we figured out what happened. (My son has problems organizing his thoughts in order to speak, so it's really difficult to express himself)
I read this book by Dr. Greenspan. I found it incredible helpful to help me figure out what my guy was thinking and how his brain works. It's pretty much the opposite of what we do. Yeah, confusing.
http://www.amazon.com/Child-Special-Needs-Encouraging-Intellectual/dp/0201407264/ref=sr_1_4?s=books&ie=UTF8&qid=1367460540&sr=1-4&keywords=greenspan
Keep the spirits up and keep on fighting. Your guy is counting on you!
My son is 24 with Aspergers. This child hated and I mean HATED school. Constant calls to my home regarding his behavior is what I dealt with as well. He was finally hospitalized for trying to choke a kid to death at age 11 in a gym class.
Now I see he had and still has issues with things like gym class. I feel bad that I forced him to go with his brother to the class (homeschool gym class).
Moving on he was diagnosed adhd at age 11 which we now know was a misdiagnosis. :( That too makes me angry.
My insurance refused further testing for my son. I was told that Aspergers and the personality disorder he was diagnosed with are not commonly seen together by no less than three mental health professionals and to get him retested.
My son is 24 now and was just diagnosed Aspergers late last year. I am trying to get help for him now but I fear it is too little too late. :(
When he was in third grade I pulled him out after a particularly nasty experience which involved a parent going off on me because her daughters were calling me a bitch and a whore on the school bus so my son just took his small umbrella and smacked one of the little wenches upside the head with it. He refused to apologize and I did not make him.
Anyway I forced him to go back to school his junior year of high school even though he was protesting against it. In short he graduated with good grades half way in his senior year at age 17, College though was a disaster I won't go into.
I do not regret homeschooling but it was hard. I have bipolar disorder myself and it has been suggested my son may also have this but again further testing was denied.
I was told once by a doctor that when adults get frustrated they loose their ability to communicate too...which is why we resort to our favorite cuss words. Our IQ levels drop like 20+ points when this happens, so what ever rolls off our tongues is what we go to.
For kiddos it's different. When they don't have very high IQs to begin with, they then loose their ability to communicate. The next best thing is behavior. Bad behavior when angry...good behavior when happy.
To me, you have already figured out his triggers. School, poorly treated in school, sensory overloads out in public, new places, crowds, etc.
But to expect to remedy these situations overnight is not going to happen. This takes years of therapy and trial and error. Re-introducing these environments slowly.
My advice to you is get to know your state laws! And your federal laws under the IDEA Laws. It gets tricky when your sons school is using restraint holds. If I were you, I would get your son tested for Autism. Then an IEP get set in place. 504s are basically for aids the kids need to help them in school...like assistive devices. You'll have more say as a parent with an IEP. But make sure it's done w/ a doctor! Next, the school would then have to do an assessment of their own to see if he qualifies. But my worries here are that they haven't done that to begin with and I just don't trust the school based on your story. I would get your son transferred or set up for online schooling. Where the environment is controlled at home and he can still obtain his education away from those problems.
I wish you luck. Hang in there mom, you can do this. It's always going to be a rollercoaster ride.