A Question for all of you with older SN kids....

[raksmama]

A Question for all of you with older SN kids. At what age do you tell them they have a LD? Ds 13 was diagnosed with a minor non-verbal learning disorder last year. He has been getting a B average the past year without being on an IEP and does not see why he has to go on one now. Honestly, I was not sure why either, but the psychologist who last assessed him recommended it saying that as he gets older and the expectations at school get higher it might become increasingly difficult for him if he does not on an IEP plan. At 13 the last thing you do is want to stand out. The school councillor assured me they are discreet yet she came in the classroom to give all the IEP kids forms to bring home and sign. DS felt humiliated. I’d like to hear from other mamas in this forum how you are coping with this situation. Thanks in advance!

[Linda on the move]

My DD is 15 and has Asperger's, a Social Anxiety Disorder, and Sensory Processing Disorder. I don't know what the best age is to tell a kid. I leveled with DD shortly after she turned 13, but with hindsight, I should have told her sooner. She knew she was different and often felt like she was "having to pass as normal" which was exhausting for her. Learning about her dx's and what they mean was a sense of relief for her. She feels that she is completely normal for a person with Asperger's, and that feels good to her.

She was in counseling at the time and after I talked to her, she talked about it with her counselor, which was a positive thing.

I got her this book:

http://www.amazon.com/Take-Control-Aspergers-Syndrome-Nonverbal/dp/1593634056/ref=sr_1_2?s=books&ie=UTF8&qid=1319041104&sr=1-2

which she also found helpful.

Thirteen is a tough age for most humans, but esp those who have special needs. It get SO much better. At 15, my DD feels that being neuro-typical is highly overrated.

[Emmeline II]

I guess you are looking for hindsight, but I'm only 1+ years into this with a 7.5yo -- ds pretty much knew when we knew. I have trouble imagining how we could keep it (ADHD) from him. It's not as if it wasn't VERY clear to him that he was different, especially since he was constantly in trouble--it was actually a relief for him to have an explanation for "the crazies", as he called it--and he's been seeing a therapist and a doctor every month or so.

I would talk to the counselor tomorrow about what happened and arrange a specific method of providing you with paperwork that cannot be e-mailed or snail-mailed.

[karne]

Now is a really good time, even though 13 is a very delicate age.  We've talked w/ my dd who has dyslexia honestly about this when she was in 5th grade.  We were up front-here's why we do testing, this is why you feel like you need to work harder at some things than other kids, this is why we have accommodations available to you, etc.  Explaining that this is not being "not smart", that LD's are often neurological, you don't ask for them, they aren't your fault, etc.-we covered that ground.

At my dd's school, kids her age participate in the IEP process by giving input about what their goals are, what strengths and weaknesses they have or want to work on, and what they feel they need to be successful in the classroom.  They are old enough to start to know themselves, and it's very respectful to include them in the process in this way.  Kids need to have opportunities to advocate for themselves as well, and it's hard to do that if you don't have an open line of communication about what/if any impact their LD has on them in school.

Edited by karne - 10/20/11 at 7:35am

[Mittsy]

I haven't been through this yet as my dd is only 6.5. I think I would let her know as soon as she showed interest, or started noticing and questioning why she was different. I think having that talk before they enter middle school may be a good idea. I think I would also either direct my child to a counselor or may'be a detailed book about their LD to discuss with me later, whichever they felt more comfortable with at the time.

Best of luck to you!

[Village Mama]

My son was 8 when we started the testing and we have been up front about what is going on the whole way along. We knew that he had learning differences from a young age though... so do lots of people in the family. We approached it as just a fact of life, a characteristic like blue eyes or brown hair. It is just a small part of the whole person. We all have different strengths and weaknesses that we must work around... every human being. We are all frank about our own struggles and strengths as well. We don't use it as an excuse or as something to feel victimized by.

My son would have been super aware of the physician visits, OT assessments and ed assessments though. Don't your kids ask why they are getting tests or why they have different accommodations in class?

[Peony]

We didn't talk much about it when she was younger. She is 8 and we've been talking about it more and more this year. She always knew she was different, the many therapists, everyone else being able to read. I had always told her she had dyslexia but she never questioned it. 3rd grade is when she starting asking more questions about how she wasn't like the other kids, etc... It isn't a secret in her school, she is just one of several kids in her class that is either already dxed as dyslexic or needs extra reading help. She gets pulled out every morning to work with a tutor and does have different assignments then the regular kids. It is different because as small private school, there is zero tolerance for teasing and many kids are there because they have some issues and need a different environment then the local public school can offer. She has some other issues, anxiety disorder and SPD, but the dyslexia is the one that really stands out to her with other kids. 

[Lollybrat]

My son is younger than the OP's, but since other parents of young school-agers have chimed in, I would like to share our experience. DS was diagnosed with autism at the age of 3 and we have never kept that from him. We have been active in the autism community, attending autism events, and we have books and articles about autism all over the house (he could read at age 2). So there was no hiding the word from him. But it's taken a long time to explain to him what autism means. That's a gradual understanding that happens over years. At age 7, DS understands that his brain works differently from other kids', that somethings are easier for him and other things are harder for him, that his senses work differently, and that communication takes a lot of work.

DS also knows that he has a vision impairment and asthma. We help him understand these conditions too. He gets confused at times about which disorder causes which difficulty, so we have to explain that again and again. It is a lot for a young child to sort out, but it was always important to us that DS not have any stigma attached to these words, so we introduced them early and matter of factly.

Originally Posted by Linda on the move 

 At 15, my DD feels that being neuro-typical is highly overrated.

I love this! I think my 7 year old DS would agree. A while back he overheard me having a discussion (disagreement) with a family member about autism and DS said, "I have autism because God made me this way. God did not make me that other way." 

A while back, I was looking for books to help DS understand his autism and I was having a very difficult time finding anything written on a child's level for a child with autism (as opposed to being written for typical siblings and peers).  At one point I made a comment to DS's psychologist that maybe I was going about it the wrong way. Maybe what I really needed was something that explained neuro-typical people for him. The psychologist chuckled and told me that many of her teenaged clients feel that being neuro-typical is overrated, so your DD is not alone in that.

[raksmama]

OP here,

 To everyone who has replied, Thanks for sharing!  

  I definitely agree that honestly is the best thing.

I just should mention that we did not talk to my son about his Nonverbal Learning Disorder diagnose because we did not find out about it until recently.  Ds’s first diagnose was Sensory Processing Disorder.  When he was reassessed at 10, the OT said that with the exception of his fine motor skills which were (and still are) below his age level, he no longer had it to the point that it could be considered a “disorder” (SPD is more of a sliding scale, it only becomes a disorder when it interferes with day to day life).  Of course we have talked to him about this. On the other hand, the non-verbal learning disorder is a new issue.

I did not really mean to write so much but I guess there are some things I ought to explain.

 I should mention that DS was in an alternative school first where he was not taught the basics well (a long story!), so when he started a traditional school in 3^rd grade he was far behind. The new school recommend he get assessed.  The school psychologist   did not find any learning disorders at the time, but hinted he might have ADD and offered to prescribe Ritalin. I knew in my heart of hearts that DS had something that was somehow related to the SPD, but not ADD.   In general my husband and I did not get a good feeling from this Psychologist.  I should add that he did not even know what Sensory Processing Disorder was!  However DS was put on an IEP and it helped.  He caught up and by 5^th grade was even getting all As and Bs.

By 7^th grade we had him reassessed by a different psychologist, one that was highly recommended to us. I must confess I was surprised by the Nonverbal Learning Disorder diagnose!  Honestly when you do a Google search it is downright depressing!  I guess I need to do more reading up on it to understand it myself before I talk to ds about it. I know his disorder is slight for he has never had problems recognising faces, (the contrary he is very good at it), making eye contact, finding directions, and making friends (although he definitely can get too chatty sometimes).  I think his disorder pertains more to understanding abstract concepts and ideas.

As ADHD and Dyslexia have become better known to the general public (even glamorized to some extent by books  like Percy Jackson and the Olympians and the fact that many celebrities are candid about having them),most people including  many healthcare providers, teachers and even educational specialists are still very ignorant about SPD and NLD. In fact even here on MDC I have not read about it much.

Edited by raksmama - 10/21/11 at 1:38pm

[Linda on the move]

The book I linked above is about both Asperger's and NVLD.  You might find reading it helpful and positive.

I really understand where you are coming from in that with my DD, we also had a hard time nailing down exactly what label is right for her and figuring out what related to educational choices and what was about her basic wiring. It's mighty difficult to explain something to a child when the experts can't agree what it is or what it means the child's future.

My DD wasn't much clued into what was going on with her peers until she was about 12, and through a combination of alternative education options (for a while she homeschooled) and the fact that she would suddenly make leaps in development, it often wasn't clear if she was a late bloomer or if something was really, permanently off. She's had lots of different labels over the years, most have faded away. The fact that she had multiple system delays as a toddler was a huge deal, but eventually she caught up in most of those things. The one label that has stuck is SPD, but it was called something different 12 years ago. Because we were never sure how much she would completely catch up, we saw no reason to imply to her that she was behind, we felt that it could be negative and a self-fulfilling prophecy.

Trying to understand what was going on with her has been like trying to hold warm jello in my hands. Attempting to explain it to her when she was small would have been impossible.

[raksmama]

Wow, i see what you mean...  you are so right when you say “It’s mighty difficult to explain something to a child when the experts can't agree what it is or what it means the child's future". Yes I feel if I took DS to yet another psychologist we could possibly get yet another label! What I also find striking is how similar the characteristics of Asperger's and Nonverbal Learning Disorder seem, yet the one label ds every specialist agree DS did NOT have was Aspergers! It is all very confusing!

I will check out the book you mentioned, thanks

Originally Posted by Linda on the move 

The book I linked above is about both Asperger's and NVLD.  You might find reading it helpful and positive.

I really understand where you are coming from in that with my DD, we also had a hard time nailing down exactly what label is right for her and figuring out what related to educational choices and what was about her basic wiring. It's mighty difficult to explain something to a child when the experts can't agree what it is or what it means the child's future.

My DD wasn't much clued into what was going on with her peers until she was about 12, and through a combination of alternative education options (for a while she homeschooled) and the fact that she would suddenly make leaps in development, it often wasn't clear if she was a late bloomer or if something was really, permanently off. She's had lots of different labels over the years, most have faded away. The fact that she had multiple system delays as a toddler was a huge deal, but eventually she caught up in most of those things. The one label that has stuck is SPD, but it was called something different 12 years ago. Because we were never sure how much she would completely catch up, we saw no reason to imply to her that she was behind, we felt that it could be negative and a self-fulfilling prophecy.

Trying to understand what was going on with her has been like trying to hold warm jello in my hands. Attempting to explain it to her when she was small would have been impossible.

Edited by raksmama - 10/24/11 at 4:49am

[raksmama]

Another thing that has got me thinking. Sometimes I wonder if SPD  is not a disorder in itself, but rather is just a symptom that accompanies other disorders.....? I sure wish that educational psychologist and Occupational therapists would work together more closely!

[Linda on the move]

Originally Posted by raksmama 

Another thing that has got me thinking. Sometimes I wonder if SPD  is not a disorder in itself, but rather is just a symptom that accompanies other disorders.....? I sure wish that educational psychologist and Occupational therapists would work together more closely!

It is my understanding that it can be a stand alone disorder, or it can be part of a larger disorder. In my DD's case, it is considered part of her Asperger's package, but it is the aspect of her issues that has made life the most difficult for her. It is the reason she was unable to successfully attend traditional school. Her social difficulties, while noticeable to others, don't bother *her* because she isn't wired for a lot of social interaction, but her sensory issues have caused some aspects of normal life to be traumatic for her.

But even as I write that it doesn't seem quite true -- she's getting more social. She arranged a play date with a friend on her own recently, which is a really huge deal. She has 3 friends now. For a long time, she didn't have any and didn't understand why other people liked having friends. But now she has peers in her life that she enjoys. May be she was just extremely socially delayed, and the kind of interaction that other kids were enjoy at age 5, she is finally able to enjoy at age 15.

[raksmama]

That is good to know!

In Ds's case he has always been very social but used to annoy some of the kids by getting to close in their faces and talking too much. The kids he ended up being friends with were either of a similar temperament, or had  more laid back personalities and did not mind his quirks. Now that he is older he is more aware of it and tries not to do those things. The Sensory Integrations shows more in his fine motor skills
 

Originally Posted by Linda on the move But even as I write that it doesn't seem quite true -- she's getting more social. She arranged a play date with a friend on her own recently, which is a really huge deal. She has 3 friends now. For a long time, she didn't have any and didn't understand why other people liked having friends. But now she has peers in her life that she enjoys. May be she was just extremely socially delayed, and the kind of interaction that other kids were enjoy at age 5, she is finally able to enjoy at age 15.

[FarmerBeth]

Excuse the long reply.  I took awhile pondering your original post before replying.  I handled discussing LD diagnoses  very differently with my son than my father did with me, and I have mixed feelings about it.

My father, who later had a NVLD diagnoses as a late teen, was very much pegged as a "problem student".  This was back in the days of streaming, and he was put in the bottom stream with little assistance.  Due to later province wide mandatory IQ testing, he found out he was far from stupid (gifted, actually) and sought further counseling independently.  He had very poor trust in the public school system.

When I entered Primary (equivalent to American Kindergarten), my combined behavior and academic strengths and weaknesses were so unusual, the school was pushing for me to be tested and possibly schooled elsewhere. My father insisted that they do the full range of cognitive testing, which I had.  All I was told from it was that I was gifted.  I pretty much was treated as if difficulties were from laziness, pushed to succeed, and very much taught to believe I could.  The reason I have mixed feelings is that what my father planned did work in many ways.  I was a highly successful scholarship student, working professionally as a musician before I was even out of high school.  Where it started to fall apart somewhat was grade 11 through university.  I was really frustrated in math because I knew the work but with the increased work load and speed required, I kept copying questions down incorrectly or lining up numbers wrong, and would have problems over that.  I was also having problems with taking notes in lecture format classes (poor, slow handwriting) and generally with just listening to them. I was given my own school records on my request in grade 12 and found the NVLD diagnoses (with visual processing as the primary weakness) then, along with suspected issues in some aspects of receptive language.  I was both annoyed at feeling my potential had been underestimated, and relieved that I wasn't just weird and that there was a reason I was great at calculus but couldn't copy numbers correctly. The psychologist I had at the time questioned the validity of the testing due to young age, but I think some of it did apply. I had a very rough first year of university, with wildly divergent grades and some very poor emotional health.  I had years of counseling for anxiety, OCD and social discomfort.  I think I would have been better off with access to understanding my problem (with or without an official label) and treatment at a younger age.  I think personally, I would have not understood a need for an IEP plan, so I can see where your son is coming from, but some sorts of adaptations would have helped.

My own son was diagnosed this year at age 11 with ASD (Asperger's sub-type).   He was very much involved with being told of and understanding his diagnoses, and the occupational therapist incorporated a lot of education on his condition into the treatment.  I was very worried he'd be underestimated, or think himself less capable. At times I totally got why my father had acted as he did with me. I agonized so much over the whole diagnostic process. In actuality, he was kind of relieved.  He also quickly made connections to that he had corresponding strengths to his weaknesses.  He's come to the conclusion that he has just as many abilities as disabilities involved in this diagnoses, like great observation and focus.  I'm early in this road, but I think so far disclosure was the right thing in his case, especially since he wanted to know.

I think the important thing is remembering that no one fits a diagnoses to a "T", especially ones like NVLD and Asperger's with huge ranges of difficulties and abilities, and people having problems in some but not all areas being a common phenomena.  What the diagnoses will mean to your son, and what sorts of accommodations make sense will be an evolving process.  And lots of things may catch up at a later time, there is no fixed limit to learning.  My Dad couldn't "get" math and never got past grade ten.  He completed high school and college in his 40's and is a certified purchaser now, and deals with complicated math and contract language daily.  I have a way of assigning numbers with a tone that helps me copy correctly.  DS (who, like your son, has friends but talks their ear off, with the added problem of going on about pet topics) really has gained a lot from social skills classes and direct teaching.  Diagnoses are tools to help people understand and help themselves or their children.  They aren't a final say in how life will proceed or what is best to do.

[raksmama]

 Thanks so much for your long reply Farmerbeth!

 Your post gives me a lot to think about! What is very interesting is that I also tested as gifted as a young child, yet the more I read about NVLD, I  think that I have it too. At school  I excelled at all the language arts, ( and I speak several languages) but always struggled at math. I am also disorganised with paper work. Ironically I am a dance and exercise teacher and people always comment on how organised my teaching is (if only they knew how my office looks). I thought I was ADD inattentive, but now I think it might something else.  

In both my case and my sons because our LDs are slight, relatively speaking, thye are easy to miss.  When you look up Nonverbal Learning Disability, the description that comes up is not being able to recognise faces or facial expressions, and that is not the case with either of us.

My son does know he has a learning disability but I just have not used the term "Non-Verbal Learning Disability", mainly because the information on many of the websites describes only the most extreme cases and I feel it would not be at all productive for my son to read these.

I have decided though that I will tell him. It is good to read about cases such as yourself and your father Beth. Up to now you are the only other person with this who I have "met". I appreciate your posts and look forward to reading them in this forum.

Thanks to everyone who replied!

Edited by raksmama - 11/5/11 at 12:08pm

[FarmerBeth]

You're welcome!  I think the terminology of the diagnoses is rare in many locations (my son's psychologist mentioned she doesn't see the diagnoses often) but you may be meeting people with NVLD and different terms or only one aspect of the disability being a recognizable problem.  Handwriting disabilities (dysgraphia), visual processing disabilities and math disabilities fall under the umbrella, but a lot of people don't have a significant problem with all three, and social difficulties vary.  We had a European pediatrician for a while that used "left hemispheric dominance" as a term for NVLD, too, so that confuses things.

[DBZ]

I explained things to my oldest daughter about her disability when she was 10ish. Knowing where all her quirks came from really helped her. She knew she was different. Knowing why helped her to process it all though. I have always told her that she would always have to work harder to learn stuff though.

My youngest is a very different case. She had an inutero stroke and walks with a walker. At 3 I'm sure she doesn't get that she had a stroke, but she has certainly heard it enough. It's a lot easier to not discuss it when your child appears normal on the outside.

My friend's two boys have autism and receive ABA services. One boy is high functioning and the other is not. The high functioning boy knows he has autism and ADD and always has been told. Knowing it has not negatively affected him in anyway.

I believe that knowledge is power. If you don't like labels, you can explain your kids quirks without them.

[raksmama]

I agree that it is better on the long run for them to know. Your point to just mention their quirks rather than label is a good one for my son since the more I read about it, he does not many characteristics that are often ascribed to Nonverbal Leaning Disability.

At this point I would hate for him to do a Google search on the label.

I believe that knowledge is power. If you don't like labels, you can explain your kids quirks without them.

Edited by raksmama - 11/13/11 at 4:26pm