scared about evaluation!

Dear Judy,

I know that when my son first began having difficulty, I wanted very much to believe that it was just a matter of him being a little behind and that ultimately there would be nothing to worry about. I worried about the negative connotations of labels and did not see my child as a “special ed” kind of kid. Ultimately, I thought that the devil you know is better than the one you don’t, so we went ahead with testing. As it turned out, there definitely was something to worry about. My son, though extremely bright, also had severe LDs and ADHD. That was scary and overwhelming, but in the end, I was glad we had my son evaluated because I got to find out what was going wrong and what to do about it. I worried a lot about labels, just like you, but I realized that my son was already getting labled by his teachers as “lazy” and “stubborn.” Even worse, he was labeling himself as “stupid.” Obviously, none of those labels were true, but without testing they might have been the ones that stuck. After testing, my son was “labeled” as gt/ld/adhd and spent four years in special ed. Our experience was a good one. My son got what he needed from his school, we supported him at home, and he came to see himself as the intelligent, hard-working person he is. Now he attends a private school for gifted students, where he makes straight As. That would not have been possible without testing, labels and special ed. Don’t be afraid of the label. Be afraid of never knowing what is going on and watching a child lose faith in himself everyday. JMHO

Andrea

I did not find special ed helpful but I did find the testing somewhat helpful. It provided me with a starting point but did not get close to the specific issues. I found going to specialists like a developmental optometrist helpful. I wouldn’t have known that his problems were visual if not for the school’s testing. I also had him evaluated by a sensory integration occupational therapist because the testing pointed to a motor problem as well. She recommended a program that provided my son tremendous gains, interactive metronome. So, school testing is really just a starting point.

My son has had alot of success with remediation provided at home. The school mostly modified (dumbed down) the curriculum. He did get OT through school because of the label and that was very helpful. The sped classs just wasn’t.

You can have your son tested and not accept placement or opt out of sped if it isn’t working out. There are some great programs that you can do on the outside once you have a better handle on his specific issues. My son is in a regular ed class and is doing well. He wouldn’t be doing well there if not for the remediation we did on the outside.

I totally agree with Andrea’s comments. Having your teacher think your child is “lazy” or “just won’t try” and having your child truly believe he is stupid (and even mentioning suicide in 3rd grade) is infinitely worse than any label they could come up with in testing.

I would say that special ed wan’t particularly helpful at remediating my son’s issues, but he came to realize that he wasn’t the only kid in the situation, he made a few friends, and he got to work with some supportive teachers who actually understood what it meant to have LDs and worked to help rebuild his self-esteem.

Our son is now doing wonderfully. I believe much of it is actually due to four years of private tutoring. These two women did wonders for his self-esteem. My one piece of advice for you is not to expect or wait for the services the school provides to address his issues. Perhaps you are in wonderful school district that can really help, but the reality is usually a lot different.

Once you get the test results look into private tutoring and/or remedial programs to help him with his specific problems areas. I would pursue those while trying to get as much help as you can from the school. The sooner you get him help, the better off he’ll be.

Had I the opportunity to do it all over again, I would NOT.

All of the testing, all of the opinions and I still don’t feel we are doing the best for him, because no one knows, its all trial and error at his expense.

The label is used against him and there is no taking back the info I shared with them when I was naive enough to believe that by sharing, I was helping them to help him. I was wrong.

I wish I could start all over knowing what I know now.

I wish I knew what it felt like not to be worried everyday because “kids like him” have a difficult road ahead and not many people understand “kids like him” nor do they care to find out.

I wish I knew what my boy would be like without the label. Would he be the same if didn’t poke and prod him?

I wish I knew how I would feel if he didn’t have this label defining him and all of the studies and statistics that sometimes trap and fixate me on defining him.

What if we just left him alone and let him be the kid he was meant to be?

What if I just had him evaluated privately and kept the school out of it?

I wish I knew.

Before I get any responses condemning my post, I’m just WONDERING, that given our experience with our school if it would have been better had we just let things be. If I could turn back time, I would have handled everything outside of school and left them out of the equation.

I wish you luck. It is a hard choice to make. Just please take this advice, once you share with the school, you cannot take it back. I hope you have a supportive and understanding staff.

Best wishes

Beautifully written!!!

Karen

My son could not have gotton this far without a label—his performance problems were too glaring. I could wish he was not LD–but he is.

On the other hand, there is something to be said for going privately and being able to control the information. My son was diagnosed last summer by a neurologist as having a right brain disorder (I think those were his words). Anyway, my son is already classified as having a specific language disability and I frankly thought there was little to be gained by sharing it with the school. He has enough documented problems for three children!!!

My son is due for a three year evaluation and I am considering going privately because I found the school psychologist totally incompetent at putting the pieces together. I got a much better picture of my son by posting scores on this board.

Beth

Yes, doing it privately might be the way to go but shop around hard as there is incompetance everywhere.

I agree with Lulu, I really think trying to get the school to do what was right zapped valuable energy that would be better spent helping my son.

It was really exhausting.

I pulled my son out of school and partially homeschooled him when it became too exhausting to fight. I had gone all the way up the adminstrative hierachy but what was clear, but unstated, was a big part of the problem was an incompetent teacher. In fact, I had a friendly (three years later) conversation with the principal where she basically told me that. I think I called attention to the teacher and the new (then) principal helped me push her out. It was just too much of a coincidence that after all the trouble I caused, she was gone the next fall.

Things have gone much better with a different set of actors, although they will never do enough for my son. I had started working on my own and with private therapy when the school’s help was a literal joke. I haven’t stopped but now have much more of a partnership with the resource teacher.

Beth

Past history here—LL had her son evaluated by an outside neuropsych, who, without spending much time with the child gave the boy a pervasive development disorder (PDD) dx. LL naively shared this with the school. Never mind that PDD is a medical daignosis a neuropsych shouldn’t be giving, never mind that PDD NOS (not otherwise specified) is a garbage diagnosis anyway that is somewhat fashionable—I guess LL’s school latched right onto this with apparently bad results for her and her child.

A PDD label is the kiss of death for a child who doesn’t actually have it—it doesn’t help the child get the services he or she actually needs and has a tendency to cause the school to write the child off. Sensible dxes like language LD or dysgraphia that actually tell you something about the nature of problems are not. The silly trend of dxing kids with two of anything with PDD is a good reason to have your child assessed privately, bounce that assessment off people on this board, and then make the evaluator, if necessary, revise their evaluation to a conclusion that actually makes sense and can help the child get the services he or she needs.

LL—sorry you and your child have had to go through all this.

You’ve heard some folks who have had bad experiences with sp.ed. My son doesn’t have as profound ld’s, his adhd affects his ability to learn in class. He was evaled and qualified for sp.ed under the Other Health Impaired category in 4th grade. He was pulled out for lang. arts/reading in part of 4th and all of 5th grades. For middle school he has been included in all regular classes with sp.ed support and accommodations and has been 90% successful all 3 yrs.

My son also felt he was stupid and told me once in 3rd grade in tears after struggling with hw that he was ‘stupid and dumb and should just go kill himself’.
We ran to the counselors office! She helped him a lot, I haven’t heard him talk like since. Occasionally he does get down on himself when he is having a particular struggle with a school subject but we get through them better now.

You know, I asked questions of teachers from the time he started his struggle in 1st grade, he was evaled before in 2nd grade and I was told he was a “late bloomer”, I was relieved to see him finally get help and to finally have my concerns validated (I really wasn’t crazy and seeing things in my son that weren’t there!)

I hope your son’s testing goes well, what no one has mentioned is that if you don’t agree with the testing results you can have your child independently tested by an outside evaluator at school expense. Or you can opt to have it done privately. You could then choose whether or not you wish to disclose the results.

Best wishes.
Amy

These are two separate issues; I encourage accurate diagnosis of the learning problem, but to get services thru public school requires a label that fits in the Federal def. of disabilities and that may or maynot be helpful to your child. Do you see a problem, and what has been done so far to work on the problem?

As several people have commented, you can opt for private testing and decide whether you want to share that information. You can also decline special ed services if you think they will not be helpful and use tutors and outside therapies to remediate. In fact, I think many people find that it is necessary for the parent to provide this kind of support outside of school in any event. I know we did. We also have always chosen private testing with a top flight professional because we feel it gives us the best understanding of our child’s needs based solely on considerations of what is best for him, rather than what may be best for a particular school system, or what may be *required* by state or federal law. In an ideal world, our schools would give this kind of testing to every child who needs it, but the harsh reality is that it would cost too much.

Andrea

judy,

I live in NH and was identified as being learning disabled by an independent evaluator (I’m homeschooled) and he recommended that I go through the school system to be officially diagnosed. I have a friend who did the same thing and if this is the public school system STAY AWAY!!!!!! They will almost assuredly tell you that your child has ADD/ADHD and be done with it, even if he/she has no symptoms. I would suggest doing the evaluation through someone not affiliated with the school system. Many hospitals will do this in their neurology department. They will give you a much more honest analysis. It is very costly ($1000 for me, $1500 for my friend) but it is worth the honest assessment.

In defense of my adhd son, my son was diagnosed in 1st grade by a developmental ped. after the reg. ped and I had ruled out hearing problems and other physical problems causing my son’s academic difficulty and problems paying attention. He wasn’t evaled for sp.ed until the 2nd and 4th grade. The schools had no input whatsoever on his adhd dx other than the teacher filling out the conner’s rating scale.
Amy

Thanks for all the great feedback! Seems to be different opinions and experiences. Sounds like the best services and support has come through private programs and home support. A lot of my son’s problem is simply fitting into the school program, and the sytle of teaching. If they had different classrooms geared towards different learning styles, many kids might be spared an LD or ADHD diagnosis. In our school, ages are mixed as well as all levels of abilities. If he has an IEP, he will be in the same classroom environment, most likely with an unqualified “tutor” helping him get through.

Hi Judy,

I think it really depends on your school system, and your child’s needs. My NLD son has really done very well in our public school for the most part. He receives most of his services within the general ed classroom. When he was younger, the SPED teacher was in the classroom for half the day, and an aide for the other half of the day. They scheduled the SPED teacher for the part of the day where he was likely to need the most direct teaching.

Now that ihe is in Middle school, he is in all mainstream classes, but most are co-taught, with the general ed teacher and a SPED teacher. The only academic class where the SPED teacher isn’t with him, (science) there is an aide to help him. He has a 40 minute Academic Support period daily, where he gets extra help in whatever he needs work on. They also a lot on organizational skills and planning of long-term projects, and keep him caught up on his science labs. (which are always a challenge because of his visual/spatial problems)

I know from reading these boards that not all school systems are like ours, and even ours is far from “perfect”. But if a child needs support all through the day, as opposed to intensive remediation of a specific skill, it won’t matter what outside tutoring or therapies you arrange outside of school s/he will still need help thoughout the day. Some school systems seem to do a very poor job with this, but others, like ours, seem to do pretty well.

My son’s grades and curriculum are not modified in any way, and he is graded by the gen. ed. teacher in each subject. So far, he’s been on the honor role all year.

Karen

This doesn’t mean we leave it all up to the school system, we don’t. We also provide outside therapies at our own expense. The school knows what we do, and we know what they do. It’s a team effort.

Karen

Judy,

I hope some of our bad experiences did not scare you away from getting your child help. If your child has only marginal difficulties you could try a program like PACE which is used for some kids with LDs and others who don’t have any diagnosis at all.

If I had to choose between paying for an eval or doing a program like this I would just do the program. If your child is in serious trouble or finds PACE to hard you might have to get an evaluation.

…glad to hear your boy is succeeding! Of course, having a mom like you certainly helps.

I have been reading these post,agreeing with some,disagreeing with other’s,feeling the sting of past experiences,wasn’t sure if I should put my two cents in,then I remembered,I ALWAYS put my two cents in:-)

Judy my two boys are LD and ADHD for the most part. Both are dysgraphic which means they have virtually illegible handwriting,lots of letter reversals etc.
They are in a small private school using a state voucher. As far as how much the system gives to our kids,I really don’t have a leg to stand on. Whether you label your kid by doing an eval or not,he already has a label. He has labeled himself,most likely.

With that being said,I am also LD,formally diagnosed dyslexic in elementary school,by way of evaluation. I remember on a child’s level feeling relieved to find out I was not crazy,or bad. I remember my father explaining dyslexia and in terms of being different,but that different always some how in my family seemed like a good thing.

When it comes to the public school system and the outside world for that matter,it can be frustrating and disheartening the amount of ignorance and insensitivity that is out there. I think for the most part what people are saying is even though you get the “label” they still call them lazy,lack motivation,”would do it if they wanted to” all that kind of BS. Are you going to have to fight to protect your child? yes. Will you with or without an eval?, probably. He is different. We are all different,different can be a good thing,or a bad thing,depending on how one looks at it.

The law says your son must be educated in the least restrictive enviroment possible,and they must provide to him the most appropriate education. Unfortunately this doesn’t happen with out someone standing up for the kid and fighting for it. Personally a kid in reg ed has absolutely no recourse or rights. Special educational services can be pretty inadequate in most instances. I don’t know where remediation went? No one seems to provide this anymore,if they ever did. IDEA is a good set of rules,unfortunately there is noone making sure everyone plays by the rules. It isn’t a easy task,don’t ever think it will be. I don’t believe that you can ever know what program will work for your son,unless you have an evaluation done. A private one is always going to be more comprehensive.

I am LD,I will always be LD. I love to read,I can spell relatively well,I write and I am successful at what I do. I had Three years of Vision Therapy as a child. Dr. Golden in Ft Lauderdale. I remember it well. Mostly I remember getting chocolate milk and a Hershey Chocolate bar as a reward for doing all the exercises. I learned to decode words in 2nd grade or so,but I didn’t truely learn to read until I was 12 or so.

Public school was what it is today,inadequate and dehumanizing. I got what I needed out of it. I wanted my kids to get more.

Thanks Judy. But like most of the other moms here, I just do what I ahve to do!

Karen

socks,

Thanks for your post. That was the best value I got for 2 cents!! Well written and intelligent.

You made some good points, especially that public schools are flawed for most kids (sped or not), and labels and fighting with school can happen for anyone. I suppose the biggest advantage is the legality of the IEP, which obliges them to at least attempt to provide services. There is no miracle cure. Without the IEP, it is up to the good will of the teacher to go the extra step (if they have the time!) I’ve tried this, and it hasn’t worked. (Teachers agree to do this and that, but don’t.)

I think having a well-written IEP with very specific goals, programs and measurements is important. This is probably where the parents must step in!

Shoot, you have the ability to make the most sense in a non-nonsense kind of way. Wish you lived closer to Jax, I’d like you to come to my next IEP. I have a feeling it’s going to be a “doozy”.

Shoot, you have the ability to make the most sense in a non-nonsense kind of way. Wish you lived closer to Jax, I’d like you to come to my next IEP. I have a feeling it’s going to be a “doozy”.

Hi Judy,

Besides the fact that an IEP gives you some legal status in terms of what you can expect the school to do for your child, there is another HUGE plus to having an IEP, and that is continuity form year to year. It still doesn’t mean that you can get away without “working” the system, but teachers can’t legally tell you that they didn’t “know” about your child’s issues, and how they are supposed to handle them. Some bad teachers will do this anyway, but legally they are on very thin ice, and if the administration wants to avoid LOTS of problems, they will help you work with a teacher who is out of compliance. (again, there are school systems that won’t, but I think most school systems TRY to do the right thing)

Not one to leave anything to chance, I make up a packet for each teacher at the beginning of school evry year, with a copy of the IEP, a one-page “cheat sheet” of problems and solutions that are likely to come up in the classroom, and an article on my child’s disability, because it’s not a common one. That takes the “Nobody gave me his IEP” excuse out of the equation.

Karen

nt

I stepped in, stood in, practically stood on my head and never got anything close to what my son needed from the school system. They were stuck with the belief that he could not improve. They had him pegged as the child he was when they originally tested him.

It was a blessing in disguise. They weren’t capable of offering remediation so I did it. My son is a regular ed kid and fits in there.
He will even excell there when we are done.

I know some say his problems must not have been that bad but his performance IQ was an 89 his visual perception was at the preschool level in second grade and he was at least 2 years behind in math, reading and writing when we started all this.

He is just not that child anymore.

Thanks for saying this. Vive la difference!

Andrea

Judy,
One more thing to consider. Not all schools are equal with regard to services. For example, in our school district there is a wonderful elementary that uses exceptional programs. They basically specialize in SPED. My school is not so good with SPED.

You might want to ask around. Get more information about what’s available at your school. In California we have something called SELPA that is sort of like a spec. ed. PTA. They offer monthly meetings through the district and have speakers. It’s a wonderful way to network with other parents and find out local information.

Testing is extremely useful, and can be quite costly to do privately, so if you can get it through your school that’s good! I too used to worry about my son being labeled and was hesitant to sign the papers so he could be evaluated. But I’m really thankful we went ahead and had the testing done. You’d be surprised how many kids (with LD’s and non-LD’s —just suspected LD’s— get tested).

I think the more you can learn about your child, the better.

Socks,

I too thought your post was great. Any ideas on how to help an LD accept that he is different (and that is just fine)? That is where we are at.

Beth

Ah the secret formula? First off you get a really big picture of your favorite famous lder. There is a long impressive list of us. Tom Cruise maybe? How about Charles Schwab?. You talk about it every day. You laugh about it,you own it. My boys just got back from Washington DC on their spring school trip. My youngest tells Dad,”hey Dad,you know those stars in california on the sidewalk with their handpinrts?” Yeah,Dad replies. “well I saw those in Washington!” “you did? ” “Yeah,and you know what?” I saw BB King’s star!”
( for those who do not know,Daddy is an ADDer and Blues Musician,who BTW,swears ALL musicians MUST be ADD also,the good one’s anyway)”you did?”Dad replies. “Yeah and guess what!” “what?” dad answers, “his handwriting is as bad as mine is!” He said with a big grin. “ahhh” Dad says”,us artist’s all write like that”“yeah” my kid says, and as he walked away he added ,”I touched his name.” as he left the room,I said to my husband,”feel the power?” he says,yeah and I am damn impressed that my kid knows who BB king is! The point,everyday as part of life itself,celebrate being different.Stand up for what you believe in,show him that there is more to life then always doing school work,or trying to change what you are. Not that I have anything against remedial efforts,just don’t lose yourself in trying to change him,fix him,making him regular ed.,I think the schools do this enough.God knows there is soo much benefit to being Ld. Just ask any artist.

yes Mam,your right. It is up to the one person who loves the kid the best. The one person who know how the kid feels,who knows when the kid is making excuses and when he needs support. The parents.Without an IEP you might as well forget the support part. And without the parent the IEP isn’t worth the paper it is written on.

Andrea,couldn’t of walk away from it if I wanted to… BTW,your great too,friend:-)

I would LOVE to see you in action too! Okay I will send a life size poster of myself and you can just prop me up in the corner. OH and BY the way,should of been in Minnesota,got to tell a few more bearucrats what I thought.

Is your child in public school? If not, then an IEP is not a way to go. I actually find at the middle school level that the teachers are fairly flexible because of the range of skills and level of maturity of the middle school students…also having 7-9 teachers is better than the one in elementary school, more of a chance of having teachers who can workwith your child.

JUDY:ASAP plase go to wrightslaw.com, Reidmartin.com, and whatever “label” they put on your kiddo- goto that website (and b.t.w. in our district, nobody is “dyslexic” but they have a specific learning disability in readng)and learn what you can. Mae sure you get a full pyscheducational evaluation- if the district is too underresourced go private. PRINT out a hard copy of IDEA (fed law re learning disabilities)-our experiene hasbeen that everyone is alot more helpful when you know what you’re talking about. Our spe ed co-ordinators are - well, slothful or indifferent or ignorant (I don’t think mean, just not with it)- a monkey eating a banana in a tree would be as helpful/knowledagable. As the parent you really need to drive this train! There are MANY different ways to learn- not being square peg in a square hole is maybe one way to define a LD- and who wants to be anyway? So good luck and god bless

you know what- even just a generation ago- there were lots of good jobs for people wh weren’t good at school (think manufacturing and durable goods) anyway these jobs are GONE!- you want the american dream- get prepared to live in an information based (i.e. reading and writin baby) society. finding techniques for “ld” kids is what nees to be done.

I kno what you mean though- my poor kiddo has been probed up the ying-yang and back :(

God bless you, too Sandy. I’ve often used the square peg in a round hole analogy!

Judy.

My husband was terrible in school. Never finished college. Does really well in marketing. He is a VP at a major company.
He has a nice smile, oodles of confidence, gifted math abilities, and more emotional intelligence than anyone around him.

as I replayed one comment my son made to me and I had dismissed. He had said to me “Why do I have to go to Mrs. _________, do Neuronet, and have the tutor come? It is too much.” He has been going to resource room since first grade and doing NN for two (and it was I who asked for a break last winter—my son’s asked me why “I do all the work”), so the tutoring was obviously the issue. I tried to schedule it better and reassured him that some other kids have tutors too. I had found a tutor to come twice a week after school to help with reading comprehension with the FCATS. I liked her and kept her on to continue work on higher level thinking skills and help with homework. She was able to help with fraction s while I couldn’t.

BUT he hasn’t been cooperating well and it isn’t like him. I saw with your comments that it is too much—not time wise (she comes to the house and he stays there while his babysitter gets his siblings so he only spends 20 minutes with her that would have been extra—the other 40 minutes would have been spent going along with his babysitter), but to his feeling of being “OK”.

So I asked him if he wanted her to come and he solemnly shook his head no. I told him that I wanted him to make a list of five reason no and five reasons yes and then he could decide. The tutor does do homework with him which allows him to play in the evening with his friends are out (they go to aftercare). Since I work, he’d have to do homework with me in the evening. And now that it is light after dinner, that is an issue. So there are some advantages to him (I have loved not doing homework all evening but I am a grown up and it isn’t affecting my self esteem).

Thanks for the insights.

Beth

I would ask him about that. He knows he has to do homework,right? And he probably doesn’t want to give up time playing while doing it,right? I surely didn’t mean to keep you up at night,god knows I do this to myself enough as it is.If it was me I would sit down and discuss the issues. Give all side of the coin and together make a decision. I like the pro’s and Con’s thing. The two other parts to the equation might not have been thought out by him. Best piece of adivce someone gave me once was,make sure they know you know they can do it. If you tell them to do it,then wind up going ahead and doing it instead(this is about housework,but it can fit to this situation,but I had a bad habit of going ahead and doing things for them)then what you are really telling them is I don’ t think you can do it either… Now if he wants to do homework in the evening,go ahead,but make sure you tell him the long and short of it. if he would rather play then he will have to do homework with a tutor,or himself

N/T

I don’t know whether he has thought this through in terms of both advantages and disadvantages. It didn’t matter so much until the time changed and kids are outside at night. Logic and reasoning are not his strengths (tutor was working on that ironically) and the writing down was a suggestion of his Neuronet therapist when he was bopping his brother (five reasons why I am, five reasons why I shouldn’t).

Don’t worry about keeping me up—there are some of us that don’t seem to start thinking until we put our head on the pillow!!!

As far as summer goes, I haven’t figured any of it out.

Beth

What the heck, I’m up all night with my thyroid and allergies anyhow.

You say that Mrs. Blank is working with him on higher-level thinking skills. This is HARD WORK. Most of us will avoid it if at all possible. It is, however, the most important thing he can do.

There are ways and ways of getting homework done, too. Mrs. Blank, who has experience with this battle, and is less biased about the kid, and less harassed otherwise, is probably making him think it through for himself. Naturally he finds this a real drag. Especially if he can procrastinate it and then rush through it any old way pushing mom for “hints” or “help”, ie getting her to do a lot of it for him.

If she is doing a good job with him, and if he does have a reasonable amount of time before or after tutoring to run around and be a kid, I would say to continue with the tutoring at least for the school year. In the summer you can work out a schedule that he does tutoring maybe two or three days a week, or takes two weeks off for a special vacation, or whatever.

This is how I was thinking about it too. But I do think he is feeling overloaded with therapy. I made a deal with him that she will tutor him in the summer when he doesn’t have school too. She told me when I called that he had just seemed angry for the last couple of weeks. It is hard work but it is not like him to get angry with people outside the family.

Thanks.

Beth

Hi Sandy.

Thanks so much for those links! Have been reading Wrightslaw’s website and it has got so much good information.

Judy.