A parent of a child with special needs: You must speak up

I wrote last week about a noted psychologist’s growing concern with the  pathologizing of “normal” boy behaviors. I received a lot of responses from parents who had resisted advice to medicate their young sons. Now that their sons were grown and doing fine, they were glad they did.

Among the e-mails that I received was this from parent J. Scott Thompson, who kindly agreed to let me share it here as I thought he made important points.

In general, my piece – which ran both in the AJC and in the blog -  was an interview with Anthony Rao about his new book, “The Way of Boys: Raising Healthy Boys in a Challenging and Complex World.”

Among the things that Dr. Rao told me: “We used to miss a lot of learning problems in boys years ago. But now we are looking so aggressively for them and we are looking earlier and earlier. Rather than rushing into a program to help troublesome behaviors, many boys benefit from a wait-and-see approach.”

Thompson sent me a thoughtful response that confirmed what I realized early in my reporting career: Parents of children with special needs have to be vigilant and outspoken advocates for their children. They get little help from society at large. And even the best school programs are limited by a lack of sufficient funds.

But let Thompson tell his story:

Under normal circumstances, I quite agree with your position. I do believe that, as parents, it is easy to fall prey to the reactionary impulse.

As you cite, normal child development can often be misinterpreted and misdiagnosed. And with all of the money to be made in doing so, the doctors and “experts” aren’t much help. There is so much contradictory information out there that sometimes people are best off just remaining calm and letting the natural order of things take their course.

We have a four-year-old son who, last year, was diagnosed with Autism Spectrum Disorder. We had been suspecting this for over a year prior to the diagnosis. Developmentally, he was not where he should be. There were other problems detected that were part of the overall problem.

To be succinct, my son has been in a special needs pre-k for almost two years. He is receiving occupational as well as speech/language therapy and other services. At his last IEP, we learned from his team that he has met and surpassed many of the goals set for him in August. We’ve seen tremendous progress.

Naturally, there are too many variables at work to be able to pinpoint reasons for my son’s success; and that is not my point.

My point is, that in our case, EARLY DIAGNOSIS AND INTERVENTION were key. Sometimes parents must react and react early if their children are to be given a fighting chance.

Here’s what I wish you would do. I wish you’d look into the expense that comes along with having a special-needs child. We’ve had to pay out-of-pocket expenses for developmental pediatrician visits, for nutritional supplements (my son has Celiac’s Disease) and for numerous therapy sessions as well as teaching materials. Many insurance providers will not cover such costs; they still look at Autism as a mental/emotional and not a medical disorder.

And because of the expenses, many parents of special needs children do not get the treatments they need and end up “lost” before they even have a chance. My wife and I are both educators, and we understand how important it is to be our son’s advocate.

We know we have a voice. Many parents don’t. Would you be willing to help give them one?

33 comments Add your comment

jim d

February 1st, 2010
2:40 pm

Ms. Downey,

I fear the silence on this one will be deafening

catlady

February 1st, 2010
2:58 pm

Note what the Dad said is that without early diagnosis and treatment, it is unlikely that his son would have made as much progress as he has, even with educators as parents.

We don’t make a mistake when we err on the side of caution (getting children with suspected problems evaluated) as opposed to “giving it a few years” and see if it “resolves itself”.

Special Needs Dad

February 1st, 2010
3:15 pm

As a father of two special needs children and an educator, I completely agree with the Dad. Early diagnosis and intervention is key. Some learning delays will correct themselves, but most won’t. If you wait too long, then you have lost all of that time that you could have had helping your child. Society is not geared towards special needs children and I, in my opinion, still feels like it discriminates against. I also know the strain of the out of pocket expense for therapies, private special needs schooling, etc. I am not complaining. I am just saying it is not easy nor cheap but very worth the effort.

James

February 1st, 2010
3:28 pm

@catlady – actually quite the contrary. We do make mistakes when we err on the side of caution; more so than if we didn’t. If you assume that there is a minimal [say 1%] chance of misdiagnosing kids as having a disorder that they don’t then the more frequently that you evaluate them for potential problems then the more kids that will be misdiagnosed.

That doesn’t mean that we should’nt look for look for problems “early and often” just that we should understand the consequences of doing so. Similarly; preventative health care costs far more money than it saves. That doesn’t mean we shouldn’t do it.

catlady

February 1st, 2010
3:33 pm

What I see is an apparent UNDER identification (our school is 70%+ free lunch), rather than the opposite. I have long wondered if the over identification is more prevalent in upper middle class areas.

James

February 1st, 2010
3:52 pm

@Catlady – good question. An anecdotal story though if I may : I’ve worked with a kid that I saw zero ADD traits in but who was on Ritalin. His family was getting government assistance to pay for it. Meanwhile my two sons are taking Concerta and I know the difference between them on it and off it are day and night. I believe that Ritalin is over-prescribed; however for me to say that sure seems like the pot calling the kettle black.

I wonder if under-identification occurs in some socioeconomic groups because of those the higher prevalence rate non-parental involvement that those groups are also tagged with? If we associate finding such orders with “being an advocate for your child” then it would make sense that groups that are less prone to being an advocate for their child would also fail to identify non-outwardly-physical disorders and other learning disabilities at a higher rate than those that do. That’s just one possible explanation among many.

retired

February 1st, 2010
4:21 pm

My last two years teaching I taught in a very rural area. The unemployment rate is over 18%. The high school has 29% classified special education. After spending 30 years in metro Atlanta,I was shocked. Many of these children should not have been in special education. Doctors in this community diagnosed everyone who came to them. You see the same doctor or two in every child. The county receives huge amounts of government money, and SSI supposts 25-29% of the families. Many of these students expect to never have to work and would tell me they were going to “draw”. Never heard that word in Clayton or Dekalb County.
As a special education educator for 30 years I did not last too long and decided it was time to retire. No one liked it when I began trying to cut unneccessary hours and begin to place children back in “regualar” classrooms, even with academic support.

catlady

February 1st, 2010
4:45 pm

I have also seen families that relish their “special” identification for the money it brings in.

HS Teacher, Too

February 1st, 2010
5:23 pm

Catlady,

I can’t speak to the actual numbers, but I once read that the wealthiest communities have disproportionately high percentages of special education students. The underlying idea was that the parents were able to find the right doctors to diagnose their children, specifically for the benefits of additional time on tests. It made a big wave when the SAT stopped indicating students who had extra time on their score reports.

I can’t verify this now, but I can certainly see how that side of the spectrum would exist in certain areas.

Ernest

February 1st, 2010
5:53 pm

HS Teacher, Too, that is interesting if true. I heard something similar once with the rationale to get additional support services.

A non scientific observation on my part, in these ‘new’ days of mainstreaming, I am hearing more stories of children that should be in a self contained environment being placed in a regular ed class, especially in elementary school. I’ve heard of a higher incidence of this in Title 1 schools.

James

February 1st, 2010
5:54 pm

As they say in the south – I don’t have a dog in this fight. I’ve never looked into the subject of the prevalence of special education and socio-economic status and have no knowledge on the subject at all. A couple of Google searches suggest that special education placement does occur more frequently in lower income groups:

http://digitalcommons.utep.edu/dissertations/AAI3035095/

“The disproportional representation of minority and low socioeconomic status (SES) students in special education classes has been well documented since the late 1960s (Deno, 1970; Dunn, 1968).”

Maureen Downey

February 1st, 2010
5:56 pm

James, I have heard the argument that wealthy parents want their kids in special ed, but I think the opposite is true. These parents are far more likely to pay for outside testing to get their kids into gifted programs.
Maureen

ScienceTeacher671

February 1st, 2010
6:34 pm

I have high school students who have been in SST/RTI since early elementary school, but have never been tested to see if they have a learning, intellectual, or behavior disorder that might be contributing to their academic difficulties. We have to ensure that vision and hearing difficulties aren’t impeding learning, why not screen for other problems as well, rather than ignoring them and hoping they will go away?

Middle Man

February 1st, 2010
6:49 pm

I think it is important to talk about what kind of disabilities we are looking at. There is a huge difference in diagnosing a child on the autism spectrum early and identifying a reading comprehension problem or a written comprehension problem which are primarily identified through a deficit model. ADD/ADHD are definitely more likely to be over diagnosed.

catlady

February 1st, 2010
6:56 pm

My observation: lower income kids get sped/meds when their problems are so severe that they cause problems for the parents. Upper income kids get more “quality of life” designations, that gets them additional time, etc, but not the stigma of a special class. In our county the problems are frequently not addressed. Our testing in unacceptably poor, WHEN it ever gets done. Like Science671, we have kids in RTI/SSt for YEARS. We’ve been gathering data through 3 week plans for 3 1/2 years, but no testing has been done, no matter how minimal. Now, if you have a child who is by age a 7th grader, but their work is at 2nd or 3rd grade, “needs basing” from here up the yazoo isn’t going to help. Something else is going on! Our county is really obsessed that we not have over x% of kids in sped, even though we have many kids who are at risk of sped-type problems (FAS, parents of low intelligence, abuse, etc.) in addition to a normal distribution.

Why hasn’t the state asked questions about this? It isn’t legal or moral to ignore these kids.

Without parents like Dad, above, and other bloggers, these kids get passed on until they drop out, get pregnant, or get in trouble, Leaving in their wake their classmates whose education has suffered due to the undiagnosed and unaddressed problems.

catlady

February 1st, 2010
6:59 pm

In addition, we have a significant number of parents who refuse to address their child’s vision problems so that the child can be tested, even when we are anxious to help with glasses through our generous Lion’s Club.

catlady

February 1st, 2010
7:00 pm

Missing comment from about 6:50, Ms. Downey.

ScienceTeacher671

February 1st, 2010
8:31 pm

Catlady, if someone ignored a physical problem without attempting to treat it for as long as some learning problems are ignored, they’d be sued or charged with abuse or malpractice.

ATMom

February 1st, 2010
9:09 pm

My son has a diagnosis of Austism Spectrum Disorder. I am an educator and counselor. I fear we may be getting so wrapped up in statistics that we may miss something. Each case must be an individual case and parents need to listen to their gut instincts. (Not the “I am so tired of him not paying attention” or “would the school keep calling if there was not a problem”). Most of the time no one knows a child like his or her parent and that parent needs to listen to and respect his or her gut. DO NOT BE AFRAID to question. Question the doctor, question the school, etc. Find qualified and expereinced professionals. Not every general pediatrician is qualified to determin e many disorders. The good ones know it and refer to the most appropriate professionals. Question until you are comfortable with the amount and quality of information you have received in order to make a decision. If someone does not like answering the questions and wants you to take them at their word, MOVE ON! Medical, psychological and developmental care of children is a team effort and mom and dad are the team leaders. Every child is different and their needs are different.

The best part…this whole conversation is taking place because we care about children and for that reason every comment is essential. Sorry, the counselor came out.

Dad

February 1st, 2010
10:17 pm

Quote : Parents of children with special needs have to be vigilant and outspoken advocates for their children. They get little help from society at large. And even the best school programs are limited by a lack of sufficient funds.

http://www.cobbiep.com

A great resource for parents to ask questions and seek answers. They mainly focus on the educational aspects of the special needs child.

[...] more: A parent of a child with special needs: You must speak up | Get … Share and [...]

Free Market Educator

February 2nd, 2010
3:21 am

Here’s a great website for those with a child on the autism spectrum. There is mounting evidence that these children are actually suffering from toxic exposure, including vaccines. Many can recover from autism through diet and detoxification. What goes on in the gut can affect the brain. This information is often suppressed, but parents are rising up and getting it out there. The latest statistic is about 1 in 165 male babies is diagnosed with autism. This growing epidemic will have a huge impact on our schools.
http://www.generationrescue.org/wakefield_statement.html

clueless

February 2nd, 2010
9:50 am

Teacher

February 2nd, 2010
12:18 pm

Science Teacher 671: When a student is in SST/RTI they CANNOT be tested for anything other than hearing and vision without parental consent.

ScienceTeacher671

February 2nd, 2010
6:36 pm

Teacher, I know that.

ScienceTeacher671

February 2nd, 2010
7:25 pm

Hey, Free Market Educator! Just heard on CNN that the prominent British medical journal, The Lancet, has retracted the study that linked vaccines to autism.

Effects of Single Parenting

February 2nd, 2010
7:53 pm

[...] A parent of a child with special needs: You must speak up | Get … [...]

[...] A parent of a child with special needs: You must speak up | Get … [...]

[...] A parent of a child with special needs: You must speak up | Get … [...]

Free Market Educator

February 3rd, 2010
12:54 am

I stick by my website. I find it fascinating that I am routinely ignored here, but mention autism, vaccines, and recovery and let the fireworks begin! Let’s just say BIG money and drugs don’t mix.

Batgirl

February 3rd, 2010
10:52 am

I teach in a rural area and have noticed for years that our children with autism come from homes with educated parents. We have plenty of kids from trailer parks, and they just do not seem to get this diagnosis. I have wondered if the problem was with diet or other environmental factors. However, when I mentioned my observation to the grandmother of a child with autism, she suggested what many of you have said here, that those children are probably more likely to get early intervention. Recently, I read about a study that reached the same conclusion, that autism spectrum disorders are more common in children of better educated parents and that it is probably because they were more likely to get medical attention earlier. I wish I could remember who did the study. I think it might have been out of Stanford or Berkeley.

ScienceTeacher671

February 3rd, 2010
6:46 pm

FME, you may be entirely correct about autism, I just thought it was interesting that I heard the report on CNN minutes after reading your post, and thought you might find the news story interesting as well. I certainly wouldn’t want you to have to evaluate additional information that might require you to have to revise your beliefs.

[...] This post was mentioned on Twitter by Gluten Free Bee, Peter Passoli, Travis Marcal, MONISE SEWARD, Lou Lou's PlaySchool and others. Lou Lou's PlaySchool said: A parent of a child with special needs: You must speak up | Get … http://bit.ly/9ujyEY [...]