PDD-NOS + ADHD child, day 2 @ school, already talking about suspension...

Emilylburns - posted on 08/11/2011 ( 24 moms have responded )

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My 9 year old son has PDD-NOS along with severe ADHD. He is on medications for both (Daytranna patches, resperidol, and strattera), and while I can tell that they help some, it doesn't seem to be enough. Today is his 2nd day of school, and already he has hit several students. The principal called today talking about suspension....already!! He has an IEP, behavior plan, and gets multiple therapies at school, so they KNOW that it's not just because he is a 'misbehaving child', a lot of these things he has no control over. Yet the school expects us as parents to either make him stop or remove him from the school system. He can't (won't) sit in his seat and work unless someone is standing directly over him, and this is hugely affecting his learning. He is so far behind his peers; it worries me to death. We have had people come in to observe him to see if he qualifies for an aide, and they all say they he isn't 'autistic' enough for a CAPE aide. The ADHD specialist that came to observe said that my son was one of the worst, if not THE worst, case of ADHD that he had ever seen in his 20+ years of dealing with it. We just don't know what to do, and feel like all of our efforts are being completely wasted. We discipline him, and do rewards and systems, yet he never seems to remember the lessons, it's almost like it's been erased from his memory. We can talk to him about something he has done, and 20 minutes later, he can't tell you what we talked about and will just say the first thing that comes to mind. This is about 1/10th of our issues, I could type for DAYS. I just want him to be able to learn and function as normally as possible, I know that living with minimal control over himself has got to be SO hard!! We can't seem to make his teachers understand that, though.....

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Marissa - posted on 08/12/2011

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They need to call an emergency IEP meeting and re-vamp the behavior plan. The LRE isn't to suspend him; it is to help him in school. IF they need to provide an aid to assist that's what they do.

I literally had to reward every 5 minutes with a kid my first year teaching then fade it back to 10 minutes, 15, etc.

I would also call your developmental pediatrician/whoever prescribes the scripts for you to see what else can be done.

Eileen - posted on 08/16/2011

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get a autism advocate, I have a friend who is a cys worker & she gave me the number of a local one & when I explained the school lied saying they already had classroom limit of disabled kids & they rejected Braydon. For one, we are a small country community & I know who was accepted & none of them had a disability. The next thing I know I am mailed a acceptance letter. It never ends, the amount of contacts we have concerning our kids...I wish you luck, I have Braydon at a autistic school 20 miles away, our public school district has a teacher who knew of Braydon & told me that she sends her son to this autism school. Its a regular public school but the classroom is for autistic kids from preschool to 3rd grade, each child has a aide, they all specialize in autism. After 3rd grade they move to another classroom with older children & learn at that pace. It's called a Competent Learning Model (clm), on the bottom of the paper I have in my hands it says Tucci Learning Solutions, if anyone was interested. Braydon has been there 3 yrs now & they say he is phenomenal academically & they are making improvements with his behavior. He too has the same as your son & but he is 7. He started headstart with a aide & when I realized she just kept him from distracting the classroom, I went to The Barber Center & had a TSS go to school with him, then was told abt this school. It felt like it took forever to get him where he is now, all the meetings with the public school in our district (which does not have a clm classroom) & complaints...it sucked to say the least. His aide couldnt even spell his name! I agree with getting that IEP redone asap. I wish you luck!

Jane - posted on 08/12/2011

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You have the right to call an IEP or ARD meeting at any time, so do it. Obviously what "they" decided to do for him doesn't work, so you need to get them together and get them to actually think about what he needs. If you can I suggest you take an advocate with you. They will do their best to intimidate you because giving your son what he needs is going to be hard work. They would rather have you pull him from school so he is no longer a problem for them.

If worse comes to worse, you can get a lawyer and sue. That is what we had to do because the district refused to acknowledge all the medical reports and would not let him have an aide. We in essence won the case (the district settled out of court) but then we had to make sure they actually did what they agreed to do.

I don't know where you are, but here in Texas we have Advocacy Inc., which is designed to help in such situations. Do a web search and find your state's version and use them.

Rachel - posted on 08/16/2011

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Why Daytrana and Strattera? My son is very inattentive and we tried many attention meds, all which made him super cranky and a tad aggressive (the gentlest soul in the world). We realized that at this age (9), these meds weren't going to work for him. At the end of the school year, he got Lyme disease and it kicked off a great deal of anxiety and would not leave the house without screaming consistently. Then we tried Abilify. He now takes Abilify and Risperdol, and while not perfect, he has been very calm and cooperative. Both Daytrana and intuniv (off brand uses for attention, made him feel horrible, as did Strattera, Ritalin, and Adderal. Focalin had no effect. So maybe the attention meds are making him cranky. You should be seeing great effect from the meds, otherwise it is not worth keeping them. Talk with your neurologist about a different course.

24 Comments

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Christine - posted on 03/15/2013

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Sure legally they cannot suspend him, but what if they call the cops and they put in a CHIPs case like what is happening to us. If the school wants the child out, they will find a way, and maybe at your expense. Autism is a horrible thing for a child to have because the educational system has no clue - or doesn't care - and thinks it is just an excuse - I see this over - and over - and over ....

Christine - posted on 03/15/2013

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Mine is 8 and currently he has been charged with deliquent under the age of 10. He has been diagnosed with NOS-PDD at the age of 3. He was pretty horrible at home for the first few years. He is now great at home. He only has problems at school, very explosive outbursts, threats, etc etc etc. Never stops no matter what school, behaviors always repeat at school. I found they demand direct eye contact - I saw this as a trigger, do they care? No, they do not believe that he cannot control his fits, they think it is intentional and they are telling him the way it is going to be - or else. They talk over his head, some words I do not even understand.

So now, and a lot of money later, we've had to hire a lawyer. The social workers in our county thought he needed community service work, family counseling, parenting skills for us, announced and unnannounced home visits (based on no facts whatsoever) - he's is great at home.

Noone believes this ! I am so frustrated!!!

So you are not the only one with a difficult child - I hope we both are able to find the right solution.

I have filed for home schooling, but I am pushing for a functional behavioral analyst, and a guarantee that he cannot run from the school - his safety - they are not allowed to stop him. Until CESA and whoever can meet these needs - he stays home, I am so sick of the school system and their insistence on teaching our children like they were like everyone else.

Amber - posted on 01/18/2013

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Just saying....his adhd and pdd-nos makes him have agression...the hitting. My ds did it as well, if you do on to others as they do to you seems to be the adhd trick, have you only treated the hitting for just the autism? I did the ADHD method, he stomped on my foot i put mine over his and lightly pushed on his using a stern voice and he stoped. I also gave him a negative token (white round circle) over a positive one...this also cured the problem. At the end of 2 weeks of it he has stoped all agression all together. He no longer is aggressive but loving. He alo tells me he is happier as he thinks people like him better now. From experience if you do what everyone tells you and have gotten no where maybe you should try another method. I was told mine wouldnt work due to his Autism.

Jennifer - posted on 01/17/2013

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OMG! That is my daughter as well. She is 8 years old. I am so tired of hearing that she is just being "oppositional" as if she had a choice.....I totally feel your frustration. My daughter has pdd nos , adhd, and ocd. I have been battling the school for so long, that it has come to the fact that I have to put her in a private school. Her IQ is 100, so I keep hearing from them that she is capable, she just fails to produce. She is so severely limited in her social skills and her ability to make peer connections. I am so tired of hearing that her behaviors interfere with her ability to learn. They keep telling me that she needs significant 1 to 1 during the day, but fail to provide it. Her teacher is so overwhelmed that Emma often sits in the corner coloring.....I feel your pain, totally.

Kirsten - posted on 11/02/2012

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What amazes me is that teachers who choose to work with children cannot help you more. I know that group behavior makes it hard for teachers but it sounds like you can get more accommodations through other health impairments (OHI). Keep fighting. ADHD is a hidden disability but not really hidden when symptoms play out the way they do. They can provide accommodations. Keep pushing. Look to Wrights Law. Keep looking and don't give up. You are a great warrior as an advocate for your son.

Susan - posted on 01/15/2012

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They cannot keep him from school call for a meeting with the teachers and special ed but keep him in school it is his right to get a education.

Erin - posted on 01/10/2012

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I would call an IEP meeting and hire an advocate to go with you maybe even a lawyer. Legally they can't suspend him.

Bec - posted on 01/09/2012

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my son sounds like yours he got in to trouble in kinder on the first day I got a call to say the least he was behaving ferral. he got expelled after the first term from a private school. I was looked at like shit and my son was looked at like a shit of a kid!!! I was pissed off!! we went to a good pshyc and the diag is accute adhd and aspie and odd so I know what you are going through. my son was put on a coulpe of meds that did nt quite work and I was anti ritalin (dont know if you have googled that before and seen stuff in the media)? He after trying a few other meds went onto ritalin and I feel bad I didnt do it sooner big turn around he did not eat as much on it though and had sleep issues so went on rispidal also to balance sleep and eatting. For sometime he only ate meals at night when meds wore off and this was ok as his weight was good. with the rispidal I do have to watch for weight gain though as it stimulates eating. I too have a bit of aspie undiagnosed and i went on rispidal I put on heap of weight but when I changed the meds i lost the weight and am good.My son has gone from being expelled to the government school where he was susspended all the time to being a happy student he is in a supported class has a very intune teacher and gets a good report card along with teachers telling me what a delight he is big turn around!!! I can now go to assembalies and be proud rather than on egg shells thinking what parent is going to abuse me??? and will he get through it with out incodence lol!! make notes on positive and negative behaviours take to doc. and have him modify and change meds till you get the right kind and combo for him things will get better just keep on keeping on and joing a parent group a face to face one if can a wealth of knowlege and a place to vent, make friends as that can be a challenge to for you and your child.oh my son also gets speech therapy to help with communication to reduce anger issues as well as school work he is 12 yr old and going into year 5. get to know the education department find an advocate for disabilities and keep the teachersw possative but dont let them run you either and dont let anyone put you down nor your child one day he will be maken money and the people that put him down may not lol!!! they are smart kids and very loving when you wade through the crap eg my son saved his pocket money and brought me some flowers and said you are the best mum looking me in the eyes, and of course I cryed typical aspie my son asked mum why you crying its meant to be good?lolI had to fight for every little bit through the school system but dont do it alone even if you take a strong mother who is willing and has proven to be a good advocate for their child may help you as a support person but remmember dont burn bridges and get a person involved who looses it. Oh and your son has a right to an education he should not be denied thisd right based on his disability but he also needs to be balanced keep talking to your doctor about every symptom the good the bad and the ugly no matter how embarrasing. Ive done it that much I dont even get embarassed anymore, I dont thik anything could shock me now lol!!!

Trista - posted on 11/19/2011

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Have you tried changing his diet at all? My son also has PDD-NOS and very severe ADHD. A few months ago we started following the Feingold diet (accept we havent taken out any of the fruits or vegetables that are restricted on the diet) Basically you just take out all artificial dyes (red 40 and yellow 5&6 are my sons big hitters) and artificial flavorings, and some preservatives (BHT, BHA, and TBHQ) Alot of the artificial stuff can cause some bigtime aggression/irritability, and we have noticed that we can't just limit it.... we have to make sure he has NONE (especially the dyes)
Anyway since these diet changes he has been a whole new kid. It is amazing the improvements in his behavior and irritability.
He also now takes Focalin XR in the morning and Intunive at night, that is mostly just to help with the impulsiveness & attention aspects, but I try to recommend the diet changes to as many people as possible, I sure wish someone would have told me about it a long time ago, and we could have seen this HUGE improvement even earlier! (google what artificial dyes can do to a child's behavior.... it's unbelievable until you see how many kids are sensitive to the stuff!

Yrenka - posted on 09/20/2011

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Marisa makes a great point. Just because there is a BIP in place, it does not mean it's being implemented with integrity. As an NPA, I can tell you that most school districts are not trained to conduct an FBA assessment and even less to carry it out. this is why, they end upnhaving to contract with people like me. Try and find yourself an advocate that can help you put pressure on the school district. I have seen it many times, they will acquiesce! Your son cannot be suspended due to his disability...

best of luck,

Yrenka Sunderlin, MS, BCBA

Joanne - posted on 08/24/2011

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It's only day 2 of a new term, the staff have not got to know him as a person, as far as I'm concerned there should be a teaching assissant who can sit next to him whilst working with others to help keep him focused and assess him. They do this with my son for the first few weeks so they can learn all about him, then gradually leave him. I know trying to get full one to one help is hard as the government will not pay out for that but my son had someone sat next to him at all times and able to help others. These are teachers who should at some point in their careers learn how to deal with children with needs. Ask for a meeting with the teacher and head and put your suggestion through, it's not fair that because they can't cope they want him removed from the school, it's not his fault! My friend had excatly the same thing where the school said about removing him because they had had enough, every child is different with these conditions and it's up to the school to learn each one that they have in their class, just because they have their 'label' doesn't mean they are text book.

Kerry - posted on 08/23/2011

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hi my name is kerry and i have a 13yr old son who has been diagnosed with ,adhd,asperges,odd, the list goes on and on.i now how u feel i have been doing the school stuff 4 8yrs with my son ,up untill this year he had not done any more then 2hrs a day at school ,weve done all the tests ect,even up 2 the point were i was going 2b taken 2 court 4 him not attending enough,hes an awsome kid and u put him on a computer he can do anything ,truely hes amazing,this year he started high school.started well yet i wasnt holding my breath,he has been suspended so many times i cant even remember,he hit a girl with a stick,witch up until this yr he had never been violant outside of home,there is so much i would like 2 tell u but i type relly slowsorry,up 2 date he has been bullied 2 the point were he wont go 2 school anymore and hasnt been 4 months and months and im in all sorts of trouble with school and department ed,my son is nearly 6foot 112kg with a size 14 foot when he doesnt want 2 do somthing he wont,im trying 4 home schooling and even if we get it whats 2 say hes going 2 do it anyway,all i can say is 4 my son it did make a difference with teachers aids and school is education is not that important .he was a happy boy and if watched and let it come close 2 our lives being destoryed.he taugth him self 2 read ,spell ect he has no fine motor skills so hey types his stuff on his computer ,hes just as smart as the other kids yet social skills he lakes ,i wish id home schooled from day 1 kids and schools ect are hard core and those scares are harder 2 find and harder 2 heal,he has 1 good mate and hes very happy with that it has taken me till this yr 2 realize he really doesnt need heaps of mates thats just my trip.u wont make them understand in the school system .weve been lucky over the years 2 find some good people,but up 2 date we are at home in trouble and getting happier ,i love my son and he is 100 percent perfect and what can i say some days we luv each other other days we luv each other and hate each other at the same time .sorry ive just raved on,you guys are amazing and i take my hat off 2 you ,i now how much ,luv fear ,happinesss guilt honor pride protection faith hope and all the others despair anger hatered envy the list go pn and on we are also so blessed as u all ready no sorry no disrespect ment ,i havent gone on the net much and ive never written anything 2 anyone b4 hope i havent been out of line ,your doing a fantastic job be proud of your self we do our best thats all we have just luv him hell grow up and be fine with or with out education and i no hell be right cause even i can tell and i dont even no you that he is so loved hes set 4 life ....just keep swimming cheers kerry

Kim - posted on 08/22/2011

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@ Angela, your child can qualify for services at school with the PDD-NOS and ADHD diagnosis. PLEASE find an advocate in your area to go to the meetings with you, and guide you as to what should be available for your child.

Angela - posted on 08/20/2011

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Emily-are you sure you aren't writing about my son? I swear you could be! Gunner is 10; his most recent diagnosis is PDD-NOS with moderate ADHD and school starts back up on Monday. I am already so anxious about the daily home notes that refer to all his "bad behaviors", the conferences regarding medicating him that I know are coming and the threats of suspension. We too are constantly hearing from the school that our son is not "autistic" enough to receive the services and adaptations we KNOW he requires in order to stay in the classroom. I despise his diagnosis-his 3rd in four years. He was diagnosed severe to moderate autism when he was 4 and it wasn't until he was 8 that the ADHD label was slapped on him. The ADHD label comes from the fact that Gunner couldn't/wouldn't sit still, concentrate and stop touching things on the neurologist's desk during the final appointment. The doctor, of course, didn't take into account that his desk was covered with interesting things to touch or that the lights in the room were "humming"-even I could hear them. These details can easily provoke these anxious "ADHD" like behaviors in an autistic child with sensory processing difficulties. The "upgrade" from autism to PDD-NOS is because Gunner is verbal (finally) and has adequate eye contact, after 4 years of daily therapy. He still has his stims, his tics, his echolalia, his pica, his obsessions: in other words, he still has his autism. But because he can read, speak and hold a pencil he is considered "high functioning" and doesn't receive the services he desperately needs. My beautiful "high functioning" son cannot tie his shoes, button or zip his pants, ride a bike or brush his own teeth-but he can verbally answer questions and make eye contact so he doesn't qualify for in school support services or OT. (Frustrating right?) We are considering consulting with yet another doctor for another, more accurate, diagnosis; hopefully one that is "autistic" enough for school services. If that fails our only other course of action is homeschooling Gunner after this, his final year of elementary school. Is there a chance that your son, like ours, has been misdiagnosed with ADHD? I believe that school personnel see the ADHD label and misread "autistic behaviors" as "bad behaviors". Unfortunately, many times that translates into them seeing our children not as an "autistic child" but as a "bad child"- I too have been called to come in to the classroom to "get him to behave". I must also say that we have made the decision not to medicate Gunner-in part because we've never agreed with the ADHD diagnosis. Having said that, I do agree that if the medications don't seem to be working they probably aren't and that should be addressed. We tried Gunner on Abilify for his aggressive outbursts. It didn't work, the side effects (compulsive eating) were too much for us and after six months we took him off. His doctor believed we didn't give it enough time and thought the answer was to simply add more medications to the mix. Our children are not guinea pigs and the medical community needs to be reminded of this. More accurate diagnosing, services for even the "high functioning" children on the spectrum and better educating of the school staff working with our children can go a lot further in curbing "bad behaviors"-medicating just seems like the easy way out. That is MY opinion and in no way am I judging parents who medicate-just as I ask them not to judge us for not medicating. I am judging the medical and educational community who are honestly in over their heads with our children and won't admit it. I wish you luck this school year and keep fighting for what you know is right for YOUR child! I'm here if you ever want to talk and swap strategies. : )

Gina - posted on 08/17/2011

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Definitely, if the medications do not seem helpful enough they probably aren't. Your son may be old enough to tell you how he feels with the medication. You might want to talk to your prescriber and see what they may be able to recommend.

Heather - posted on 08/16/2011

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Council for Children with Behavior Disorders (CCBD) www.ccbd.net
The Federation for Children with Special Needs (FCSN) www.fcsn.org
IDEA Partnership www.ideapartnership.org
Parent Advocacy Coalition for Educational Rights (PACER) www.pacer.org
Hopefully you can find some help through some of these organizations...the one on IDEA should tell you that the law does not advocate for suspension after such a short period of time, although there is a stipulation about the child causing physical harm to others...good luck!

Marissa - posted on 08/16/2011

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No two kids will have the same brain chemistry. What works for one kid won't work for another. That's the same point for an IEP. Rachel, when I was treated for PPD after I had my youngest son it took 14 different med switches before they got it correct. I stumped them all. Perhaps your thoughts, while well meaning, aren't as helpful as you may have thought.

Kim - posted on 08/16/2011

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Both Rachel and Jane have valid points regarding the meds, but from the way it sounds to me you aren't very happy with the results of the medication your child is on, so maybe it is time to try something else. Also, I agree that an IEP meeting is in order with a very candid conversation about adding a one-on-one aid. Please do find an advocate in your area to help you through the process. Unfortunately many school districts use every loop hole they can find and some even just blatently ignore the rules. Best of luck to you, and know you are not alone. We start back to school in a few days after a really rough year last year that culminated in us also having to take the district to court. I hope that a good advocate will help you avoid that course.

Jane - posted on 08/16/2011

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@Rachel - You have to constantly have to re-evaluate medications. What works for one child won't necessarily work for another, and what works at one age and body size may not work at another. My son takes different meds from either the OP's son or yours, although he has used some of the same ones in the past. There are even kids for whom no meds work really well, so parents and doctors go with what works the best, although the results may not be perfect. So cut her some slack on the meds issue.

Jodi - posted on 08/16/2011

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My blog has a great article on how to prepare your teacher for your child with Asperger's, there is some great info and a link to a site I can't live without. http://rantsnrascals.com/2011/08/prepari...

Another thing I would do is to write a letter to the school board telling them what you expect. I know it's balsy but that if you don't receive the help you will go public. It's a shaky and scary thing to do but sometimes schools need to be pushed into understanding we are not going to send our kids to some remote island somewhere. Our children have rights, too and they have the right to learn and if the government is not going to give us the help and support we need then we are going to fight for it. We have too for our children's sake.

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