Frustrated in Washington

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I feel as though I'm coming at all of this a little late in the game. My son, now 12 was diagnosed last summer with PPD-NOS , ADHD - Impulsivity.

Our back story with this small town/small mind education system. He was expelled from Kindergarten, I chose to homeschool - reached more or less grade level, re-enrolled him in 3rd grade - he was then expelled again for behavioral issues (repeat @ 5th grade)

His former pediatrician did not believe he fell under the umbrella of Autism, recommended parenting classes for myself (single mom of 4) and therapy. Check & Check.

His expulsion in 5th grade brought about Social Workers and he was removed from my custody, although I was able to arrange having him placed with his grandmother. This kicked him backwards. He began living in his head, had fantasy friends, became hermit like, obsession switched from Minecraft to FPS video games (courtesy of relatives) defensive, developed night terrors - counselor sticker-ed him with PTSD and Major Depressive Disorder, this was Feb 2012.

In June of 2013 I was court ordered to have him screened by 2 local Psychiatrists one of which chose both PPD-NOS & ADHD - Impulsivity, the other Autism Spectrum Level 2 without intellectual or language impairments.

His 6th grade year I was able to get him into a district near by and he was expelled before Thanksgiving. When he tried to go for a walk, the staff circled in around him causing him to feel threatened, when he tried to push through them they proceeded to restrain him.. long story short the police officer was kind enough to walk with him and he calmed immediately.

I can't seem to get anyone to understand. He's a 12 year old boy, which happens to look like a 20 year old, with an amazing vocabulary - he rarely uses properly, a complex thinker who seems to get it, yet mentally he's about 8 or 9.

He's expected to become a typical 7th grader (pre-teen) overnight. Wrong Planet covers it. I feel as though we're trying to run without feet.

I guess that was kind of a rant/Introduction. I haven't been on a message board in years, my apologies if this was posted in the wrong area. If I hadn't been forced to deal with the world, I probably wouldn't have. Nothing in society makes sense or at least not much of what I've encountered does.

I don't know where to go from here.

Have you tried to get an IEP or a 503 from the district, now that he has a diagnosis, or is the district making like an ostrich, burying their head in the sand, hoping you and your son will go away?

Methinks it's time you contact the disability rights network in Washington State and ask for some kind of assistance. You also might want to contact a local chapter of the Autism Self-Advocacy Netwok in your part of Washington for help.

I've attended 3 IEP meetings. They're like trying to comprehend Klingon. The clock is ticking, but the hands aren't moving. All the nurturing/rewarding ideas I give them are twisted into punitive.

At the end of last year he was on campus from 7:30-10:30. The first few weeks of Spring he was completely secluded, just him and a para-educator. The school used cookies and soda for his rewards/motivations and he ballooned, with zero access to physical ed. (This is a boy with falling arches) by the end of the term he had been integrated into 2 IEP classrooms.

This year he's at school from 7:00 - 11:30 no lunch and food rewards are no longer allowed (to top it off the school adopted a no snack policy), he has 4 IEP classes and one "normal" PE class. The district swears it cannot accommodate him due to his high turn over rate in the para-educator department.

He cannot stand being watched, nor followed (he's both watched in class and followed between classes). He refuses to ask for help when he doesn't understand something, because he says they're all stupid and make no sense. I happen to agree with him for the most part, there's very little logic in the educational system.

I didn't know he'd qualify for a 504, heck I have one of those for my daughter and it doesn't seem to be do anything either. Maybe they're hoping we'll just shut up and go away or shut up and conform.

My son's current therapist, I fear, is Anti-Autism. I got into a discussion with him about his broadsided approach to dealing with my son as if he were any other kid off the street. I asked if he'd delved into alternative ways of communicating with a child having Aspergers, his response hurt. He said he wasn't willing to put such a burden on us, that stamping him with THAT label was akin to admitting he had some incurable disease. It would stay on his permanent record and haunt him for the rest of his life. Wouldn't ignoring his weirdness (what we call it) put more hurdles on our path in the long run

At this point, then, it's time to contact the Disability Rights Network in Washington. I'd also be contacting your local bar association and ask them for a list of attornies who specialize in developmental disability law. I'd also contact your local ASAN chapter, as well as GRASP (www.grasp.org) for assistance. It sounds like the district is trying to railroad him eventually to prison.

Thank you for the links and taking the time to respond.

At this point, then, it's time to contact the Disability Rights Network in Washington. I'd also be contacting your local bar association and ask them for a list of attornies who specialize in developmental disability law. I'd also contact your local ASAN chapter, as well as GRASP (www.grasp.org) for assistance. It sounds like the district is trying to railroad him eventually to prison.

You need an advocate to help you navigate the system. If he has a level 2 autism diagnosis, he may also qualify for disability services from the state in addition to the school district. It's called Regional Center in CA, not sure what the equivalent would be in WA. Did the diagnosing psychologist give you any guidance on where to get help?

You should definitely read From Emotions to Advocacy by Peter Wright, to help you understand the IEP process better. But I think you definitely need a professional advocate to help. Try to find out if there are any "non-public" schools for kids with autism within a 90 minute drive. The advocate may be able to convince or force the school district pay for his education and transportation to such a school -- they've already admitted they can't provide an education for him.

By Washington, I assume you mean the state and not DC.

Here are some resources, I completely agree that you need an advocate - probably both a legal advocate AND someone who is in SPED or is a therapist who understands the treatment options. If you are on the spectrum yourself and feel that that is affecting your ability to access appropriate help for your child, I would mention that to the people you are screening as advocates - they need to be able to work with you.

First, the state has the following service which should be your first call: http://www.governor.wa.gov/oeo/about/request.asp

http://www.washingtonautismadvocacy.org ... rdinators/

http://www.washaa.org/types-of-health-advocacy.html

http://www.arcwa.org/getsupport/special_education

http://www.washington.edu/doit/Brochure ... arent.html

I don't think I can add anything on obtaining resources but, wow, it sure sounds to me like the world has been doing wrong by your unique child. I hope that having the diagnosis will help that all change, but even with the diagnosis too many people know too little.

Your son's attitude that everyone else is stupid is pretty typical for a child who hasn't had adequate support. He KNOWS he is smart, and he KNOWS that no one understands what he needs or what motivates him AT ALL. Hence, they must be stupid. It is also a way of withdrawing / creating a self-protective wall with the world. But, ultimately, that will be a self-defeating mindset for him so I truly hope you can help him navigate his way out of it, understanding that "different" does not have to translate to "better" and "worse." That is difficult for kids his age to figure out, however, if the foundation isn't there. What he needs more than anything is to have people understand him and get him what he needs, so he can develop some trust with the world and the people in it. Right now, it sounds to me, like he has none.

Meanwhile, I think you should read, read, read and read. The more you know, the better you will understand all the little things going on with your son and be able to figure out protocols to use with him. And, the more competent you sound to educators, the more you can mold the way they interact with him to meet his needs. There is a thread up at top with recommended reading for parents, and another thread that links to common topics on this board.

I also think it might be productive to talk about what the some of the specific behavior issues are that the schools keep slamming him on, so we can brainstorm some ideas on how to help you address them.

Welcome to Wrong Planet and I am so sorry to hear how rough it has been for both you and your son.

Haha, yes State, My apologies for not specifying. I have the links bookmarked, thank you for the information. I have to admit though just skimming through it all I get a nauseous feeling and haven't a clue what do with any of it I have a hard time figuring out what to say. One of the biggest problems in getting a diagnosis was not being able to point out his odd traits because I didn't think he was very odd lol. I mean I knew he was different, but those questionnaires didn't have much in the way of relate-able context for me to answer. I do have my mother and she's helpful when it comes to deciphering stuff I can't seem to wrap my brain around. If youtube or vimeo had a walk-thru... I'd be able to grasp it easier!

Thank you, it's nice to find a place like this!

There's a few things he keeps getting in trouble for, the one which tends to happen most often is from being followed. They have a woman and her only job is to follow him from classroom to classroom. This is a kid who gets frustrated when even I come into his (rather large) personal bubble, without cause, reason or permission to be there. He'll get prickly and irritated by her constant presence and if he's not having a good day to begin with, he tends to yell at her

If he had a para educator who understood strategy games like risk or magic, or even one with a scientific leaning mind I feel he'd have a lot easier time learning. I'm usually only able to get him to understand a thing when I explain it in game form or scientific terms i.e. "you need these people to be your allies for the next stages." "you remember that thing about equal or greater force? that's what your school counselor is when you're having a problem at school."

I have him on Khan Academy mostly for Math and he just flies through it, yet his Math teacher says he's so far behind the teacher isn't sure he'll be able to catch up and the district won't accept any work done online unless it's through one of their programs. My son says their Math program is a baby game with dumb laggy movies. He also says the language program takes so long to load, most days he can't do his work because the servers are overloaded.

When he gets wound up, music calms him. Mostly Beethoven, U2, Tschaikowsky and a german band called Unheilig, but he's not allowed to have an Ipod on school grounds.

He also isn't allowed to walk anywhere to calm down. Walking helps him reset. The school claims he can't go for walks because it's a security issue.

They don't have a quiet room or safe zone set up. He isn't learning any life skills. They don't even have a home ec course available anymore and he loves to cook.

He hates the feeling of a pencil, he can write on a whiteboard but because it isn't on a piece of paper the school won't give him credit. He gets sent to the office for not writing on paper and most recently he was sent to the office for refusing to keyboard. He says its because they're dumb thinking he's dumb and they were watching him. He really hates being watched.

I feel like taking my skin off every time I talk to these people. I believe they're trying in their own way to help, but they're making mountains out of mole hills and ignoring the actual mountains. If my school had acted the way these do, I'd have been in court a lot as a kid.

I have reams of notes in my head, but I don't know what to do with them. If I'm not sure where to start and how to start, I can't seem to get myself moving.

Would it help if I outlined steps? (I realize this could sound sarcastic or superior - please don't take it that way, I'm just not good at that balance)

First, download this form and fill it out: http://www.governor.wa.gov/oeo/about/Re ... rvices.pdf

When you get to 23. Briefly describe the problem or situation: you can cut and paste this, edited what you wrote above

At home, my son is on Khan Academy for Math and flies through it, yet his Math teacher says he's so far behind the teacher isn't sure he'll be able to catch up. The district won't accept any work done online unless it's through one of their programs. He isn't learning any life skills. They don't even have a home ec course available anymore and he loves to cook.

He keeps getting in trouble when he is being followed. A staff person follows him from classroom to classroom. If he's not having a good day to begin with, he tends to yell at her. When he gets wound up, music calms him. Mostly Beethoven, U2, Tschaikowsky and a german band called Unheilig, but he's not allowed to have an Ipod on school grounds. He also isn't allowed to walk anywhere to calm down. Walking helps him reset. The school claims he can't go for walks because it's a security issue. They don't have a quiet room or safe zone set up.

He hates the feeling of a pencil, he can write on a whiteboard but because it isn't on a piece of paper the school won't give him credit. He gets sent to the office for not writing on paper and most recently he was sent to the office for refusing to keyboard.

For the "what do you want the office to do"

Help me advocate to get a para educator who understands my son's interests and way of talking - strategy games like risk or magic, or a scientific leaning mind. I am successful when I explain things to him in game form or scientific terms i.e. "you need these people to be your allies for the next stages." "you remember that thing about equal or greater force? that's what your school counselor is when you're having a problem at school."

Help me advocate for a behavioral plan that accommodates my son's needs and keeps him out of trouble, rather than inciting it. Current behavioral plans are either punitive or use food rewards, neither of which are effective.

Help me understand what is going on in IEP meetings.


When they get back to you, something to think about asking: are they offering therapy to address the issues that happen when they refuse your son's work?

Gosh he sounds so very ASD to me!

Obviously, to me at least, he has extreme sensory issues. These can and should be accommodated in an IEP or 504. Specified accommodations can include things like recognition of his personal bubble issues, so that if the school is going to have someone follow him, they must maintain a certain distance (exactly why do they do this? Is he a runner, ie one of those kids always escaping for no identifiable reason at all?). Being allowed to use a white board would be an appropriate accommodation. Having an "escape clause" providing him a specified, safe and quiet place to go when he needs to self-calm would be an appropriate accommodation. Being allowed to walk a specified route when stressed would be an appropriate accommodation. My son's schools would have easily agreed to ALL of those sorts of things, had they been necessary (my son's needs were a little different, but the school was generous about ALL of them - we were so lucky).

They need to start with the assumption that these are NEEDS, not behavior issues, and treat them as such. Individuals on the spectrum do not experience sensory things in the same way normal people do and, thus, what is insignificant to us can be as painful as nails constantly running a chalkboard to them. Until you mitigate the things that obviously cause him stress, he has nothing left for dealing with challenges or trying to learn. THAT is why the sensory issues have to get honored; the kid needs to have some energy left to process and think. When in sensory overload, he has none. Eventually, once he feels safe, he can gently reintegrate some adverse sensory items into his life. Obviously, at some point in his life, he will have to learn to cope. But get them to start by giving him a clean plate; he can't learn to cope in the state of overload he is currently in.

I would dig into the math issues a little more. It may be that your son has a lot of trouble with things like long division that specifically require writing and tracking, but can breeze through the concepts. Unfortunately, he has to be able to write out the long solutions and the need to do so isn't going to go away any time soon. Someone may have to sell him on that piece; it took years to sell it to my son. My son is disgraphic so there were huge barriers to that element, and it sounds like there are definitely barriers with your son, as well. See if you can isolate the problem enough to allow everyone to start to figure out a plan for dealing with it.

The increased involvement of language and word problems in math curriculums may also be an issue with your son.

Asking teachers to change their phrasing isn't really a tangible accommodation that I can imagine putting in an IEP, but you certainly can and should recommend it to your son's teachers as a way of helping him.

I wouldn't worry about him not learning life skills at school IF he can otherwise get an appropriate education. That can come later. But he probably SHOULD be getting speech therapy, since it sounds like he most likely has pragmatic speech issues, ie trouble achieving truly reciprocal communicating using common, everyday language; that doesn't mean he doesn't know what the words mean, it means that he has trouble getting language to work for him EFFECTIVELY. That is a service that can and should be offered in an IEP. At minimum, they should be testing for speech services qualification; there are some pretty complex language skills expected of 12 year olds that I can bet your son struggles with. Again, it has nothing to do with vocabulary or pronunciation, and everything to do with understanding how OTHERS use language.

Hmmm ... I think all that, along with MomSparkey's suggestions, will keep you plenty busy for a while. Feel free to cut and paste anything I wrote in your communications with the school. We're pretty far down the road and my son is doing really well, working on his college applications. I've been there and done that, and KNOW that the sorts of things I am suggesting usually WORK.

.

I want to add that it sounds to me like you are quite well tuned into your son's needs and know how to reach him effectively. It gets difficult to stay confident as a parent when you've been questioned as much as you have, but I think it is obvious that you have worked hard to know your child and be a good parent to him.

My son's preschool thought "we" were the problem, and told us we would have to get family counseling to stay in the program. Which we did. After a year of family counseling, the counselor told us she was convinced there was nothing wrong with us, and that the problem was clearly with the school. That was amazing validation to get. It had been what I thought, but the school really had me doubting myself. We still hadn't gotten the ASD diagnosis yet and were still struggling in many ways, but it was important to have a unbiased third party tell me to keep my instincts ahead of what other professionals might tell me. That has been so important as we've gone on this journey, to remember that I really do know my own child better than they do.

Being questioned as parents is not an uncommon experience for those of us with children on the spectrum. So much we have to do to be successful with our kids runs contrary to conventional wisdom.

I want you to have the same reinforcement I got all those years ago. You know more than these other professionals seem to think you do. Do not let them make you doubt what you know, or to rattle you. Stay strong, calm and consistent in advocating for what your son needs. You really do have a clue; the world may not always "get" you or your child, but you DO know quite a lot already. No doubt you aren't a perfect parent, but no one is. Learn from the mistakes and let go of them. Then return to the business of being a very important advocate for your child.

I will add that at this point down the road no one questions me at all. Not schools, not extended family, not doctors; no one. Instead I get extremely positive feedback for having so successfully advocated for my child all these years. I have respect. That preschool director was so very wrong.

Yes, us too.

One of the pieces of this journey has been figuring out DH and my connection to autism and how it impacted our ability to communicate with all of these school people, only made more difficult because of our own memories of school and people not understanding us. It helps a lot to have things quantified: these days, when we talk about DS's deficits, I sometimes say "that one is mine," or "that one is from DH" We now have a good enough relationship with his school team that we can talk about our own experiences in overcoming our deficits and how those help us figure out how to help our son.

When we started out, I don't think it occurred to anyone that we might also be on the spectrum. Bizarrely, I don't think the idea of "genetic link" has sunk in to anyone - and when professionals do understand that parents might be like their children, they walk on eggshells about it. It's nice to be rid of that, finally.

Oh my goodness. I am an AS high schooler on the east end of the Cascades (are you as well?) and this really makes me sad too. Pretty much that school is trying to put him on an "NT assembly line." He obviously needs a lot of needs and help. Maybe put some of those things like go for walks, music breaks etc. on a 504/IEP if possible. Then the case managers and teachers *will* have to allow it. I get to finish tough quizzes the next day or before school ends, if I did not get finished during the 55-min period that it was given in. I also get extra time to finish HW if I struggled on it, and the teachers knew I tried my hardest. He also needs somewhere to go calm down when he is struggling or frustrated. What those wacko paraeducators/teachers are saying are EXCUSES! If he has to go into the hallway, he can go into the hallway and maybe with a paraeducator to calm down.
This is pretty ironic - because my district banned all electronic devices and ALL food (except for lunch). Kindergarteners can't even have a snack anymore - which every year when I was in elementary school there was a snack break - somewhere around mid morning. They say "oh, some kid might have an ALLERGY!!" We were allowed to bring cupcakes into class for birthdays when I was really young - in a public district north of Seattle, no less. Not anymore for the new generation of kids. I don't even know if they can even sing "Happy Birthday" to them anymore...much like how some teachers don't decorate for the holidays due to "other people's beliefs."

Finally, if he gets in more "trouble," DOCUMENT IT! He needs all the support he can get and the school is not providing it. I thought schools were allowed to provide support for sp-ed kids by law? Obviously they only care about their $55,000/year paychecks.