Info for Parents of Kids with Special Needs

[thalassa]

I debated about putting this here, or in the news section, or in science...but I figured this specifically is probably something of more interest to parents and family, and that we could turn it into a general info/advice/discussion sort of thread of parents with kiddos that have special needs.

So...here it is--from ADHD to autism to anxiety to Down's syndrome... Share info, resources, or just your story!


New news on autism:

http://news.yahoo.com/autism-may-tied-flawed-prenatal-brain-growth-212009245.html

[B. de Corbin]

Re: Info for Parents of Kids with Special Needs

As a teacher, I see a lot of kids every day.

Many of them are miserable. The amount of depression and anxiety, particularly in hard economic times when parents are out of work, marriages are crumbling, and the kids are shoved onto a back burner because mom and/or dad have huge immediate concerns, is astonishing.

I know a lot of parents are against meds, for one reason or another, but, when the meds are REALLY needed, it gets close to child abuse to refuse them. Nobody expects a diabetic to just tough it out without meds - depression, anxiety disorder, and the ADHD alphabet soup, are every bits as much physical conditions as is diabetes.

[Shahaku]

Re: Info for Parents of Kids with Special Needs

We have a really bad issue around here of kids being diagnosed with ADHD by their teachers. The teacher says "your kid has it, get them on meds." And the doctor doesn't even consider it. They just write a prescription. So lots of kids have been getting put on the meds without proper evaluation and really they're just particularly excitable, just need to learn a little self control, etc. My husband's family has had a couple issues with this in recent years, my husband himself being incorrectly put on the meds as a kid... then they just gave him a higher dose when the hyperactivity became worse...

So, I'd say it's really important to get proper, professional opinions on whether your child should be medicated for any mental condition or not. I do think over diagnoses is a problem.

[B. de Corbin]

Re: Info for Parents of Kids with Special Needs

I'm not sure what the deal is in Iowa, but if I attempted to diagnose a kid, I'd most likely be fired. Teachers are not qualified to make medical diagnoses.

Now, I might suggest the kid be checked by a qualified medical practitioner, based on my in-class observations, but the qualified medical practitioner still has to do his/her job.

When something such as you've described happens, I suggest that a parent take his/her kid to a doctor willing to do his/her job.

[thalassa]

Re: Info for Parents of Kids with Special Needs

So, I'd say it's really important to get proper, professional opinions on whether your child should be medicated for any mental condition or not. I do think over diagnoses is a problem.

I think, if you look at the problem, its not so much overdiagnosis as it is problem is MISdiagnosis. There are several things that ADHD can be mistaken for, and several things that a child can have in addition to ADHD---usually those things are anxiety disorders, food allergies, and sleep disorders (but there are others). All of those things will change how they should be treated. Plus, medicating for ADHD is a lot of trial and error--a child's needs will change over time, and not every child does well on every medication. And, while medication "works" better than behavioral therapy (without meds), a combination of behavioral therapy AND meds is the best treatment for children with ADHD...and properly medicating a child with ADHD means they are less likely to develop drug addictions later in life (often as a method of self-medication). This is also why diagnosing kids that actually have ADHD is so important (and taking a second look at kids who don't respond to medication--seriously, Sharkbait on meds and Sharkbait off them is like night and day...if he's not taken them, you KNOW just by watching him for 5 minutes). I'd be willing to bet that "under"diagnosis is as much of a problem as "over"diagnosis--or, more correctly, the WRONG kids are being diagnosed.

To be honest, I think the education system is over burdened and teachers aren't aren't given enough training on behavioral problems, and the methods of handling them (behavioral therapy works well for kids without behavioral problems too)...and their class sizes are too big to teach effectively, particularly when so many kids have learning differences. Smaller class sizes and better training (by people that specialize in it) would give teachers a bigger tool box for these kids. And, more non-structured outdoor time...prefereably NOT on a playground, and more play time, more art, more music, less standardized testing, less expecting kids to be cookie cutter.

And...too many parents fail to do their reseach. Part of *that* is a societal problem because too many people never learn to do research properly--what consists of good information, how to interpret (or even find) scientific (and medical) studies and information. They expect that they can give a kid a pill and it will *fix* them, like an antibiotic does...mostly because of the marketing. Honestly, I'm of the opinion that parents need more resources for when a kid gets diagnosed with any major condition that is expected to affect much of their lives, or at least their childhood. You can not parent a kid with ADHD in the same way you can get away with parenting a regular kid, it just doesn't work for them and it will frustrate the heck out of both of you--they are less resilient, they need more help to develop empathy, they take more time to do even simple tasks that require concentration, they are more likely hurt themselves and break things, they are more likely to blow up at seemingly small frustrations, they need more instruction in developing social skills....I make the joke that Sharkbait is my "extreme sports kid" or "10 kids packed in 1 body".

Also, while I do think there may be some GP or non-specialty pediatricians diagnose children with ADHD rather than discerning between some of the other conditions it could be, I think that is largely because they lack the expertise and training to do so and the resources (time and money) to get training in every.single.disorder. that exists out there--our knowlege of our bodies and our minds, and how they work is unprecedented. Parents need to ask for (and physicians should recommend) a second opinion (though health care which often won't pay for it) for things outside the realm of basic health care. My kids' pedi takes care of their sniffles, their bumps and bruises, their yearly check up and their shots...and for his ADHD, Sharkbait goes to specialist (he specifically goes to a Neurologist that specializes in ADHD and autism-spectrum disorders at the local children's hospital).

[Shahaku]

Re: Info for Parents of Kids with Special Needs

Thanks, Thal!. Misdiagnosis is probably correct. You just see a lot of the cookie cutter style being applied to disorders as well now I guess, around here. "Oh, you're having some sort of mental/attention issue? It must be ADHD. Or maybe Autism." Definitely nothing else. And no way it could be you're just acting like a kid and need some help developing some skills. It's like they don't even try, or tell the parents to try this or that, before medicating. And I don't know if this is all over Iowa, or just my area. It could just be my area. We live in.. well what's considered a city for Iowa. Nothing like Chicago, but still tons of kids, way not enough teachers.

[Tylluan Penry]

Re: Info for Parents of Kids with Special Needs

Almost impossible to get a child diagnosed on the autistic spectrum in my part of the world. Can take years...

[B. de Corbin]

Re: Info for Parents of Kids with Special Needs

To be honest, I think the education system is over burdened and teachers aren't aren't given enough training on behavioral problems, and the methods of handling them (behavioral therapy works well for kids without behavioral problems too)...and their class sizes are too big to teach effectively, particularly when so many kids have learning differences. Smaller class sizes and better training (by people that specialize in it) would give teachers a bigger tool box for these kids. And, more non-structured outdoor time...prefereably NOT on a playground, and more play time, more art, more music, less standardized testing, less expecting kids to be cookie cutter.

Amen to that.

As far as research goes, a parent should put AT LEAST as much work into understanding their kid as they would into buying a new car. WebMD is a great place to start - so much info on many different aspects of medical problems - standard meds, side effects, things to look for, evaluation of various treatments with the + and - of each, symptoms, things to watch for, etc., etc.

[thalassa]

Re: Info for Parents of Kids with Special Needs

I'm not really shocked...because there have been news stories from time to time on this (and we've talked about it here)...but to bring the subject up again:

http://www.motherjones.com/politics/2015/08/kentucky-school-cop-handcuffed-8-year-old-boy-mental-disorder

Rather than make this a debate on the appropriateness of the cuffing a small child (and yes, this child is small) with an atypical neurological disorder (because yes, ADHD is more than a kid that doesn't want to listen and can't sit still, whose parents didn't parent enough, regardless of what you think is *really* wrong with your nephew or your neighbor's kid or that kid on Dr. Phil) in what is a clear violation of that state's law by a person that should be trained well enough to know better...lets go with practical information and advice:

You need to know (special needs or not) what your school's policy is (and whether or not it is compliant with state or federal laws) regarding disciplining your child. You also need to know that just because it complies with state or federal law does not mean that your child has any legal protection from physical or chemical restraint, from the use of seclusion and isolation rooms (including rooms that are externally locked and hopefully no one will forget them if there's a fire), or that (should these or any other forms of restraint be used) that YOU EVEN HAVE TO BE NOTIFIED of the use of such methods with your child.

Additionally, If you are the parent of a child with special needs in any US school system your child needs an IEP or 504 plan that identifies them as having special needs. If your school says "oh, but their grades/test scores/whatever are fine and they don't qualify," that is complete and utter bunk, if they aren't following the IEP/504 plan, etc--and if necessary, you should consider getting an educational advocate (if you can afford one). You need to know what your legal rights are as a parent and what your child's rights are by both federal and state statute. And you need to know what your state's laws are concerning restraints. (some states protect all students, others protect special ed students, but most states don't do anything)* Additionally, a parent of a child with special needs can make no restraints/seclusion part of their IEP/504 plan (though, schools don't have to follow a parent's recommendations for their IEP or 504 plan. nor do some teachers even follow the IEP or 504 plan ones its been established...but there is some recourse there for parents)

*This was written in 2013, some states (like Virginia) may have new/different laws on the book since this was written--Virginia has required the state BoE to adopt regulations, though this seems to be the furthest they've gotten on that so far. Also, Arizona's laws have changed.

[Wenny]

Re: Info for Parents of Kids with Special Needs

My mom taught high school and middle school. From what I saw (and I didn't know more then what she told me, you know work ranting) that it is schools 20% effort to the parents 80% effort to advocate for the child but parents don't know how to advocate or just don't care.

[thalassa]

Re: Info for Parents of Kids with Special Needs

My mom taught high school and middle school. From what I saw (and I didn't know more then what she told me, you know work ranting) that it is schools 20% effort to the parents 80% effort to advocate for the child but parents don't know how to advocate or just don't care.

The problem from my observation and experience (as the parent of a special needs kid, and as a neighbor and friend to a special ed teacher) is that 1) the laws involved are complicated, and very few people actually understand them 2) lots of schools don't want to help--it costs them time and money and its easier to shuffle the student through than to actually educate them, 3) parents don't know their rights or their child's rights (and many schools certainly don't help that), 4) parents don't want to make waves--I've been guilty of this...my kid has one option for a teacher because he's in an inclusion class--if that teacher sucks (like last year's teacher), there is only so much I can do before my kid is going to be treated even more poorly by that teacher because I caused a ruckus, 5) yeah, some parents *don't* care, OR the don't know better, OR they don't want their child treated as being "different", and 6) good teachers don't get enough support or training and bad teachers don't get fired.




Some of this, IMO, is our health system as well...in terms of the advocacy and honestly, in terms of interventions. I really think that once your kid is diagnosed with X, you and your family should have training available on X, and that it should be covered by health care as counseling or therapy would be...and that includes working with schools and teachers for those children.

I'm not a special education professional, I'm not a neurologist, psychologist, or other mental health professional, I don't know the ins and outs Cognative Behavioral Therapy or medication trials or classroom management. Because those things aren't my job. My job is to love my kid, feed him, and try to get him to be the best future adult he can manage. I need help with that. I have a full time job (in addition to being a mom), I don't have the luxury of spending my time figuring out what to try next when something doesn't work at school...that is what the professionals are supposed to be there for. I know my kid, I know what works at home...I don't know how to make that work in a classroom. Goodness knows that I get called all the time at work to give my professional advice of how to manage the issues that I am knowlegable about...because that's my job. I know what other parents and teachers have said works for other kids in those classrooms...but when you don't have a teacher willing to try those things, when they are convinced that the child with Aspergers (not to mention my son that *just* has ADHD and OCD) is just a "behavioral problem", well, you as a parent are sort of screwed for the school year. There were days I had to take off from work or let him stay at the babysitter because KINDERGARDEN was so stressful for him that he literally fell to pieces. Kindergarden should be reading books and finger painting and running around outside.

[B. de Corbin]

Re: Info for Parents of Kids with Special Needs

It is sooo complicated...

Special ed teachers have a difficult job in everything from the students (not their fault, but they are often as difficult as it is rewarding to work with them) to gooberment required paperwork. They have an average working life of 5 years (after 4 - 5 years of college. Student loans paid off? Shit no).

Money is a huge issue that CAN NOT be ignored. The greater part (much greater) of a school's "per pupil" budget goes to special ed programs. State and federal laws mandate certain programs and procedures, but frequently do not provide funds to support them (this is typical political sleigh-of-hand. It allows a politico to claim he/she/it is doing something FOR educating those in need, while simultaneously avoiding the need to raise taxes. End result? Eviscerate public ed).

The above often results in untrained teachers being forced to do specialist work (which is like going to a podiatrist for brain surgery. No matter how well educated, well meaning, or hard working the podiatrist, it's a really bad idea). It results in some schools having nominal (in name only) programs. It results in some schools activity avoiding informing parents of their rights - for fear that they will ask for what the school can't afford.

Honest to f'ing god, there are no free lunches. A parent needs to advocate for their child, AND for higher taxes, less money squandered on high-stakes, test-and-punish tests that do no good, except to the ginormous, multi-billion dollar testing companies that sell them, and other unpleasant stuff like that.

In fact, it isn't only parents. Anybody who doesn't want to live in a degenerating country needs to look a public education in the US - not as something to fling shit at, but as something to be supported (with real cash) and improved (really improved, not pseudo improved via assignation).*



* I believe this is the last time I will ever say this. Currently, my wife, who works at Walmart, a company universally despised for abusive practices toward employees, in a job where she has been for five years less than me, which requires no higher education, no continuing education, no unpaid overtime, and no mandatory volunteerism, makes as much money as I do, and has much better benefits. For the sake of my sanity, I have to let it go...

- - - Updated - - -

Crap. I just realized I forgot to take my pills. I must return to chemically induced equilibrium.

[Hickory67]

Re: Info for Parents of Kids with Special Needs

We have four teenagers, all with special needs. Our 15 y.o. son is Autistic (high functioning). He can communicate, but in very limited scope. Our 16 y.o. daughter has Asperger's Syndrome. She is an amazing singer and aspiring actress - you don't see her disability when she's on stage. Our 17 y.o. son is ADHD (Inattentive Type). He struggled all through high school but now, in college, the light has come on and he's doing well. Our 18 y.o. daughter is ADHD and "Other Emotional Disorder" (as I stated in another thread, we think it's Borderline Personality Disorder. She's a wonderful young lady, if overly impulsive and mischievous.

My wife is a Special Ed teacher (she certainly has the experience) and is the department chair for the kids' high school.

Thanks for posting the article.

[callmeclemens]

Re: Info for Parents of Kids with Special Needs

I have a unique perspective on this, especially involving an aging population and restraints. I'm a certified ABA specialist that serves a immensely challenging population in an isolated private community.