Is He Misdiagnosed?

While I am certainly not able to say if there is a misdiagnosis, I am wondering about his diet? Certain behavior problems can be triggered or exacerbated by items found in common processed foods. Children can have sensitivities to certain dyes, additives, msg, etc. without being "allergic." Raw food diets and even whole food diets can make a big difference in some children's behavior and general well being.

Victoria

It sounds like he would benefit from Special Ed Services (it has nothing to do with intelligence or being smart)- they may help him learn to control his temper)

A.,
I'm sorry for what you are going through. Especially being a single parent doing it alone. I don't want to make you feel worse, because no one ever wants to admit there is anything wrong w/ our kids. But what you described does sound a bit like Asperger's. Have you researched it? Your situation sounds very similar to someone I know. That's why I'm responding. Sorry if this ends up being long...
My friends son has Asperger's/ADHD and he is also very smart (gifted). He was even taking some of his classes w/ the next grade up because he is so smart. And that's part of Asperger's. But he cannot, and has not ever been able to handle mainstream school no matter how hard she's tried. She practically lived at that school trying to help him fit in. Being smart doesn't get a person through life. You have to be able to follow the rules, and use common sense too. Sometimes these kids can't. Not because they don't want to or don't know better, I guess it's just that something isn't wired right and they can't help themselves. He was even Baker acted in the 3rd grade because of an outburst. There were many more before that one, but I think that episode was the last straw for the school.(He is remorseful afterward too, with the written apology letters and etc.) He's been asked to leave at least 2 schools. He's not a bad kid, really. He just doesn't understand how to utilize proper social skills. Never has, even back in pre school.
It was very hard for her to accept that there was something wrong in the first place. And again, hard to "label" him as special needs. But that is the only way to get the state help and special funding for teacher aids. Eventually she had to take a step back and realize that yes, there is something wrong. The rest of us close to this family always kind of knew that something wasn't quite right with this boy. Once she had him tested and started telling people he had Asperger's it helped. We (and families of the other kids he went to school with) could sympathize instead of getting mad about his behavior. But it was hard to explain to my kid why the other boy could get away with that kind of behavior (disrupting the class w/funny noises, running around the class and not sitting at circle time,throwing chairs,hitting everyone, etc...)My kid started acting like that too. He thought it was funny. And if "Joey" could get away w/ it so could he. (NOT!) It caused alot of trouble for us and I eventually had to pull my boy away.(For some reason since they had been close friends,alot of aggression was directed at my boy. Eventually the I'm sorries and apology letters weren't good enough anymore.) Mine is old enough to understand now, but from 4-7 they are too young to really get it. And maybe I didn't know the right way to explain it to him either. This family is now home schooling and it seems to be working much better.
The teachers are right you know, it isn't fair to the other kids to sit through the outbursts. It is taking learning time away from them, and it doesn't set a good example for them either. What do you think the other parents are saying? (Remember, everyone wants the best for thier own kid) If you don't think he is diagnosed properly, then the other parents or school staff probably think he's just a "bad" kid. If he's in a Magnet, fundamental or private school they can, and eventually will, kick him out. It does not matter what grade he's in. I'm not saying he has Asperger's, because I don't know you guys and I'm not a specialist in this. I'm just giving you my point of view from the outside looking in. We all want what is best for our kids. But if someone in my kids class is having "violent, upset times" you can bet I'll be in the principals office asking what the heck is going on in there!(wouldn't you?) And asking why that child is not in a special needs class if there is a "problem", or suspended. We already have kids in the classrooms that act out and there isn't any "real" problem. If one does have a legitimate problem, we (you and the school) need to get them help. Don't try to force him into mainstream school if he can't. It isn't fair to anyone, and it causes so much grief for the kid. The other kids start teasing even more than they normally would, and it only gets worse the higher grade they go. And his outbursts will get worse because of it too.
I'm not trying to freak you out. I just want you to get a jump start if he does have a problem. My friend was in denial for a long time about her son. Eventually I couldn't be the friend that this lady needed me to be. I had to do right by my child, and remove him from the situation. I've always felt bad about abandoning her, but that's how it had to be. So I at least hope that some of what I've shared can help you.
Keep your eyes open and don't be in denial. I really wish the best for you both. No matter what, if he has something or not, that's your kid. I know you love him. You can do whatever it takes- hang in there and keep up the good work. Maybe someone else can pitch in and give you the medical advice. Best wishes! j.

Dear Alexa,
There are so many behavioral difficulties with children that are either nutritional deficiencies or toxins in their systems. Drugs are another form of toxins - here are some areas to check out: www.childrensbehaviorhelp.com (free ADHD report). www.phporder.com/LivingHealthy (under the education section there are Battle Plans for autism, aDHD, etc. - this guy has "cured" autism with nutrition!) and then there is a wonderful woman who handles kids with all types of nutritional deficiencies - www.docmccullen.com.
Best of luck.

My mother deals with these types of kids-she is a special ed teacher for autistic.. I also had a friend with aspergers..Talk about an einstein! He was a total brainiac! It sounds like the diagnosis is on the money. My mom said to check into the gluten free and casein free diet, which is basically wheat and dairy. She said she had a little girl whose mother put her on that diet and she straightened right up. Hope it helps, she said she can get you info on that diet if you want!
R.

Oh dearest A.,

My son is now 14 {bless him} and he was also diagnosed with all of the above that you mentioned plus ODD which is opitional defient disorder, all of this was at 7 years old, the same age as your young beautiful boy.

The school system did not bother to take the time to attend to "his needs" because his behavior at times were not of the "norm"...so they asked me to go to a docter, which i did, knowing all the time that I refused to put him on meds...however, they talked me into it somehow, and I gave him "Adderal"...now that is an adult "pharma". I stopped that right away and started researching, then went into the school, everytime they called me, which was 2-4 times a week.

You see the big Pharmacutical companies are pushing the docters, who in return push the school system into putting all of our children on drugs~! I am dead set against it hon.

This is why...I noticed my boy was not acting the same {smart} like before, btw...{did you know that most boys are diagnosed with this} He was acting the way the teachers wanted him "under control"...he lost weight, lost his appetite, and asked me to please stop giving them to him.

The reason I am telling you this my friend, is that you cannot and shouldn't believe all docters.

Do your research like I did online about your sons condition, you see I now homeschool my boy with lots of attention and love.."NO MEDS" and he is "highly intelligent" at college level and only in the 9th grade. I do realize that you work full-time, but homeschooling is an option, and it doesn't take up much time, just a thought.

What those drugs do to our children in the longrun is very bad. It stunts growth, messes with the testastrone {sp}, just please do some research.

Trust me, lots of love and talking with him about things will calm down his temper. My son would go in the closet and have a temper tantrum. It's sad to see them go thru this hon, but meds are not the answer, I am just sharing my opinion, that's all.

And trying to help you. I noticed the school system is quick to jump on giving our children meds so they can cope with them.

Not me, I went into the school and demanded that my son be put in a room alone for lunch, because of the sound stimulus, and I demanded that he be allowed to roll on the floor of the classroom in the back of the room, and I demanded that he be allowed to use the restroom when needed, and eat snacks when needed, because that's my son, and I am his advocate! They complied after I got HSDLA after them, and a lawyer. My son went to school from K-5th grade. The children all respected my son, that was a good thing.

He is doing so much better now A.. Just try what I "suggested" sweetie. I wish you much luck with your son and if you need to speak with anyone, your more than welcome to contact me, I know a lot about this.

I believe your son would benefit from a therapist and groups that work with specially gifted children, that is what I did up North, sorry...I don't know of any in the area, but you could look online.

Much respect * Peace,
M. D.

With a medical diagnosis, you should be able to get a 504 plan in place for him at the school to help him. Even is he was placed in Special Ed, the majority of those students are mainstreamed. What you are asking for would be done, if the school was able to place him in the program. I taught many special ed students. By law, I had to accommodate their needs based on the qualifications outlined in the 504 (Which you as the parent help create). I am surprised that by now, the school psychologist has not gone into the classroom to identify behaviror triggers and reinforcing consequences that are maintaining the behavior.

I taught classes where students would have traveling aids (really special case, the kid has cerbral palsey) and other classes where I had multiple special ed kids and had a Fusedd class, where a special ed teacher co-taught with me...she helped with behavioral issues and helped those that needed one-on-one help keep up.

The only way to legally make them accommodate your son is getting a 504 in place...once that guide is there, they have to abide by it

Hope it gets easier for you
P.

Hi A.,

I don't know what resources are available in the Naples school system, but ask if there is an autism specialist in the county. Ideally that person could come and observe your son and make recommendations to the teacher. Also, as he gets older he will face the pressures of standardized testing, such as the FCAT. You will want testing accomodations. This can be accomplished with a 504 for your child. If you consider special education services, perhaps he would benefit from a resource placement where social skills are taught by the resource teacher in a separate classroom a few times a week...or however they might set it up at his school. You might also want to look into teaching him with social stories. Below are some links that might be helpful. Check with your district to see if there are parent advocates that can go with you to meetings. They can help you understand what resources are available in your district and what your rights are.

I hope you are able to help your son find success.
M.

http://www.polyxo.com/socialstories/introduction.html

http://www.ldonline.org/

http://www.ldonline.org/article/Social_Skill_Autopsies:_A...

http://www.yourlittleprofessor.com/schools.html

http://card-usf.fmhi.usf.edu/

Collier County Autism Support Group
The mission of the group is to increase community awareness of autism and provide support to families living with autism.
Meets the third Thursday of the month. Time: 7:00 pm to 9:00 pm.
Location: North Naples United Methodist Church, Founder's Hall
6000 Goodlette Road North, Naples, FL 34109
Contact: Robin King at ____@____.com .

I'm a retired elementary teacher. It sounds as if your son could have Asperger's disorder. These kids are usually very intelligent but sensory problems trigger outbursts (they can be sensitive to loud sounds, bright lights, heat and cold extremes, touch and often have food allergies). They don't do well with changes in schedules that they don't know about ahead of time. They have trouble making eye contact and aren't very social. There are different degrees of Aspergers ( high to low functioning). Some kids do better in special schools or classes especially at early ages where they can learn to adjust to their problems. As they get older they learn to compensate for their needs. There are many good books out now that would help you to understand and give you ideas and there are support groups listed on the web. example: www.asperger.com. J.

I wish I could be helpful, but google support groups in your area that are for special needs. There also has to be something provided threw the state, look in the department of children and families site. I will look up some sites and email them to you. I hope this helps.

Hi, Wow, you have your plate full, that is for sure.
First, and before you even finish reading this go to ChildrensBehaviorHelp.com- these people are wonderful and they have helped us so much and I know they will help you.
Secondly one of my dear friends- BarbaraSwanson has a son with this diagnosis and she has a web site for it- so type in Asperger's and Barbara Swanson and you'll get her web site- if you don't(I am sure you will) write me and I'll call her for it. I'm Doc McCullen(docmccullen.com) in Dunedin, and tell her I sent you along- she is the absolute best.
Your instincts are correct and these referrals will validate you and help your carry out what you know is correct already.
Best luck, and let me know if there is anything else I can do, doc

A.,

look up the diagnostic criteria for aspergers in the dsm iv. if it sounds like your son, then he has aspergers. now here's the trick. if he has aspergers' then he does not really have adhd or the mood disorder. it makes schools happy to have all these codes and it gives doctors justification to put him on the meds, but the behaviors are part of the disorder until he learns to behave. it takes time. my son didn't master it till he was in 5th grade. be patient and be his advocate above all. the school can not do anything regarding an iep and services without your permission. my advice, make the provide the services. it pays off in the end. my son is 12 and unless you know what you are looking at, he seems quiet and quirky - but when he was 5, he was the child you are describing. there is hope - but it takes time / and i know from experience, being a single mom at the same time makes it triply difficult.

A.,
I would suggest you contact Dr. Renee Terassi at
Piece by Peace Learning Center in North Fort Myers. She is a local expert on Asberger's and related syndromes. She came and spoke at our school last fall during a teacher in-service and it was very eye-opening to me as a teacher. I recall that she did say Asperger's can't be truly diagnosed until later elementary or Middle School because the symptoms mimic so many other syndrome and/or learning challenges. She can evaluate your son. She came out to our school to do group observations for several students we were concerned about. Obviously your son needs help. Seek it and don't give up. Don't let public school officials write off your son or misdiagnose and medicate just to get rid of a 'problem.'

A. dear,
I know more than one kid with Aspergers.
They are ALL wicked smart kids.
When they were small, it was tougher on them,
and on their parents too.

You've gotten advice here from a good number of moms. I agree, get support. If his diagnosis is correct, you may find respite opportunities which may help you both in the long run.

My son was never tagged with Aspergers.
He does have a thick file though, which includes alot of the behaviors you mention. I was told he was ADD, ADHD, PTSD (he'd been abducted as a 5 year old), and ODD (which is oppositional defiant disorder). I had a great advocate
(school clinician) who encouraged me to NOT let ODD reside on the record, because, as an adult ODD can negate the potential for certain government work, and honestly, he wasnt defiant with EVERYONE (as a true ODD actually is).

He was enrolled in Special Ed as a 1st grader, began therapy that year (until 6th grade) and struggled with his peers, who never really "got" him.

I never medicated him, and always advocated for him.
We did find success with eliminating alot of stimulants from his diet and by eating fresh food, rather than the prepared ones. I also found success using St. Johns Wort and Bach's Rescue Remedy.

What helped me MOST though, was the study of his astrological birth chart. No kidding. I wish I'd done so when he was a small child, as I would have been better prepared to mother him. When he was 13, or so, I did this deeply, and learned where his capabilities reside, and where he'll always be challenged. Most importantly, for MY son, I learned that he is much more likely to make good choices when I don't TELL him to do something. Funny, I'd been thinking more control on my part would serve him better, when it was really that I was inflaming the issues by doing so. I can only equate this to horses: If a rider holds the reigns too tight, the horse will often rear up, and act out. When the rider "gives a horse its head", loosening the reigns, the horse will be more apt to find its course in the most optimal way.(We are ALL different: if you have an interest in learning more about your son's birth chart, check out my mom owned business).

Whether you have an interest, or not, in what worked for me, do hold out hope and pray for the courage to move through this together, as a team.

My son is 16 now. He is still enrolled in special ed,
but only on consult, which means he has support where it's needed, which is minimal. (he is permitted to leave a room and go to a "safe" place in school if his temper escalates, which is rare now, and to be given extra time on tests...distractions still are a challenge). My son is a leader in the cultural diversity club and, as he always has, a strong defender of underdogs. Laughingly, many folks judge his individualistic appearance as scary, but he's all love and justice. I would not want to relive his first 12 years for anything, but I would not trade those times for anything either, because they were the incubation required for my son to blossom into the fabulous man he is becoming.

Best to you A., and to your son too.
BTW I was a single mom through it all too, back then.
You WILL get through this.
Have Faith.

I'm praying for you.
(I think alot of us are)

Blessed Be,
S.

It's hard being a parent of a special needs child. It's harder still sometimes to do what is BEST for the child. My 9 year old is also special needs, though we have yet to find a good doctor to help us. I am employed by the school district, and know that the money is not there. We already provide free breakfast, lunch, vision, hearing, speech, etc. testing district-wide. But so many parents want these services, that there are not enough therapists or money to go around. But it's so much easier to blame the school district for all our children's issues, I'm learning.

I have contact with all kinds of children. No, I disagree that teachers are quick to push meds, unlike what some people are saying. What these people DON'T seem to realize is that teachers have contact and YEARS of professional experience dealing with ALL kinds of children (not like a parent that maybe has one or two children as their only experience, nor need any education in children at all to have them). So, yes, when one comes along that stands out as struggling or has major behavioral issues, that teacher WANTS to get that child help. Your son throws chairs at school when he's angry? How would you like to have a job that pays about $30,000 a year, and have a child in your classroom that could hurt you or another student at ANY TIME because they get set off? The teacher has the responsiblity of the entire class's safety to worry about. If one child gets hurt, then she has to answer to the principal and the hurt child's parents. I'm not trying to make you feel guilty, however, we should all think about that "other shoe" before we rip into teachers and the school system.

You know, sometimes meds are the answer. If he is calmer and more in control, then he can start to learn techniques to deal with his emotional issues. He needs outside behavioral therapy. His violent outbursts should be taken seriously. It will take many years of practice for him to learn a new way of dealing with his anger. However, don't wait until he's 9 or 10 or 11 when his hormones begin changing, and he's kept up with the violent reactions for so long, that it's become who he is.

I do have some advice though, having navigated through this myself. 1.) You do need to have open communication going with your son's teacher. If she sees you as an advocate that WANTS to help her son be successful, then she will do what she can as well (in theory. However, all teachers have different tolerances, so you need to become involved with what kind of teacher your son has NEXT year). Ask her to keep a log for 1-2 weeks with the times of the day as well as what happened just before the incident. Maybe it will help you both to see a pattern. If your son's school as an ESE specialist NOW is the time to make an appointment with that person for the next school year. Your son SHOULD be on an IEP with his diagnosis. Once he is on an IEP, he can receive special services through the school. For example, my son is pulled out of class for a little while each week to meet with the school psychologist for a little social therapy. My son is also receives (one-on-one) services in the subjects that he is below-level in--reading and writing. He also gets accomodations for testing, which your son will need with SAT-10 in 2nd grade, and FCAT 3rd, 4th, and 5th. His IEP includes behavioral goals as well as educational goals. He has a seperate behavior chart, because he is a visual learner and likes to have a goal he can see. I have had open communication with all his teachers over the years, as well as the ESE staff, and though my son has his days, I know everyone that works with him wants him to succeed. I tell each person that works with them how much I appreciate all their work several times a year.

p.s. Special ED., or ESE, is not a punishment either. It's a smaller classroom setting with a teacher that has certification in teaching special needs children, rather than the "one size fits all" teaching that other parents on here are talking about. Usually there is also an assistant teacher in an ESE classroom to work one-on-one with a child when they need the extra help. The classroom setting that is not so great is an EH (Emotionally-Handicapped)-classroom setting. While we are hoping to get a McKay Scholarship for our son, if we don't, then he is going into the ESE classroom at his school. I know that he will do so much better in a smaller setting with only 12 other students and 2 teachers, that it doesn't bother me at all for him to go there. Having actually long-termed subbed for a ESE K-3 teacher for two months, I see that there is nothing wrong with those kids except they are slower in some subjects, need more one-on-one, or need a lot of extra encouragement to succeed. In the secondary grades (4th and 5th), regular ed. can be way more intense with all those raging hormones than the ESE class. Yes, I'm definitely happy that my son will be going into the ESE class next year.

Hi A., I have 2 special needs boys under the ASD umbrella. My 10 year old has autism and my 13 year old has Aspergers Syndrome. My name is K. S. I am responding to you about my 13 year old. When he was in theh 2nd grade, he was also tested for gifted. In the 4th grade he realized he had angry management problems and at that time I took him to see a neurologist. From your description of his behavior it sounds like he wasn't misdiagnosed. My older boy has the same symptoms. Of course, with him being 13, he doesn't behave like that in the classroom or at home consistently. He is on Vyvanse and Seroquel. He use to be on Focalin. And both of my kids are ADHD. So, when I read your letter and kept on reading, I had a feeling that your son was not misdiagnosed.
Now, I don't know if there is such a thing as a "talk therapist", but I do know if a Pediatric behavioral therapist in St. Pete(I am assuming you live in Tampa or there abouts).
Her name is
Dr. Carol Lilly, MD
12901 Bruce B Downs Blvd
Tampa, FL 336124742

Phone: ###-###-####

Areas of Specialty
Pediatrics
Description of services: A pediatrician is concerned with the physical, emotional and social health of children from birth to young adulthood. Care encompasses a broad spectrum of health services ranging from preventive healthcare to the diagnosis and treatment of acute and chronic diseases. A pediatrician deals with biological, social and environmental influences on the developing child, and with the impact of disease and dysfunction on development.
Then there is Dr. Flora Howie. She is a doctor at Devepmental Behavioral Pediatrics
880 6th St South.
St. Petersburg, FL 33701
###-###-####
I hear she is very good. If you want a ped neuro, there is Dr. Jose Ferraira
528 S. Habana Av Ste 301
###-###-####.
My kids have been a patient of his for the last 6 years. Him and his staff are excellent.
If you want to talk further, my number is ###-###-####.

A different time of day-5:30: A., I just got through reading everyone's posts. They are all accurate and alot of it I have gone through and still going through. But, the respite will tough to get though as of last September 08, funds were cut. I wasn't happy. But like the other moms have said, don't give up. Keep on fighting. Have a very close relationship with your sons teacher. Parent/teacher communication is very important. Be involved in your sons school, speak with the ESE specialist, therapists there, everyone. I hope everything works out for you. Just try to hang in/be strong for yourself and your child. Take care, dear.

Hi A.,

I am so sorry, sounds like you are going through a really tough time, you have all my sympathy. I don't know if he has been misdiagnosed but if you are based in Pinellas County there is a free service that can help you. My sons school contacted them when they had some concerns about him. It is called the Project Challenge Program and is part of Coordinated Child Care of Pinellas, Inc. here is their number ###-###-####.

They put me in touch with a wonderful lady, she advises as to which Docs to see etc. She observes him in school with his teachers. She then offers advise to the teacher and to us as to how we can help our son. I can email or call her anytime with questions. It is a great service and free. I hope you are in Pinellas County as this would really help you I think.

Best of luck.

J.

As another momma mentioned, it might not be a bad idea to get an evaluation from an occupational therapist (to adress sensory integration difficulties, which are very common in kiddos with Asperger's). Also, a speech-language pathologist is a good resource in order to assist with the social stories, teaching appropriate language/coping, etc. What area are you in? Let me know and I'll send more suggestions as to specific therapy centers if you're interested.

Good luck and keep being an advocate for your little one! I know and love several little ones with Asperger's and know that they need someone in their corner! :-) Good luck and God Bless!