Really sad about my DS's new "label"

[Anonymous]

We had 4 yo DS evaluated in preparation for school apps. (He was diagnosed with PDDNOS 2 years ago.)

He scored "borderline" in the Weschler tests of intelligence.

Intellectually, I know the test isn't meaningful for much except finding the right school for him. Intelligence tests done on kids so young aren't indicative of what their intelligence really is (especially since DS has many speech and language issues--receptive, apraxia, etc.), and he might well have different scores when he's older and has overcome some of these issues.

But I'm still sad. On a day-to-day basis, I don't think of my child as a "moron" or an "idiot". (which is what he'd be called based on his scores.) He's smart in his own ways. I'm sad that the evaluations don't allow his strengths to shine through.

But also, now a seed of doubt's been planted. What if? What if this is as smart as he'll ever be? (He reads a bit--mostly self-taught.) What if on top of his ASD, he's mentally retarded?

Thanks for letting me vent.

[Anonymous]

I think a lot of us have been there, in one way or another. I'm not always as positive as I should be and sometimes think of this as a constant mourning process...as soon as you reach acceptance there is some new reality that knocks you back down a step. But, like you said, he's smart in his own ways and you know him better than any person, test, or label ever will. Hang in there, there's lots of growing to do.

[Anonymous]

Sorry this is making you so sad. I'm no expert, but if your 4yo is starting to read I'd hardly think he would be considered mentally retarded. You said so yourself, he has many delays which will affect the results of the test. I'm glad you were able to vent, which you should continue to do, but as you said "He's smart in his own ways." and he will continue to surprise you.

[Anonymous]

It's okay to feel sad. It's not easy when your DC isn't exactly what you'd thought he'd be and you have every right to feel the way you do. It's okay - really. You'll be alright, he'll be alright. He's very young and as a PP said, if he's reading, he's probably got more intelligence and potential than he's been given credit for. My DS has developmental delays and didn't learn to read at all in Kindergarten. All his peers could read at the end of kindergarten. Not him. He's also got ADHD and significant expressive/receptive speech delays and scored low on intelligence tests. However, as you said, at young ages, those tests aren't very accurate. You'll catch your breath and get a second wind. When you do, things probably won't look so grim. Please know that you're not alone. Hugs to you.

[Anonymous]

My son scored 'borderline' too. I kept asking "borderline for what?" and no one would answer. You know what? He is so smart in so many ways but not in an ordinary sense. People always remark upon how bright-eyed and clever he is, but he scores abysmally. At first I felt like crap about it, and then I decided that really it's the tests that are so flawed if they can't capture the real "intelligence" of our children.

BTW - my sister scored I think 80 or so on an IQ test when she was 6 or 7 yrs old. She is now a partner in tax in one of the biggest lawfirms in Boston and is, without doubt, one of the smartest people I know. The test just couldn't capture her outside-the-box intelligence.

Sorry you're facing this. It sucks, I know.

[Anonymous]

Anonymous wrote:Sorry this is making you so sad. I'm no expert, but if your 4yo is starting to read I'd hardly think he would be considered mentally retarded. You said so yourself, he has many delays which will affect the results of the test. I'm glad you were able to vent, which you should continue to do, but as you said "He's smart in his own ways." and he will continue to surprise you.

I was going to write the same thing. It takes a lot of smarts and effort too to read at that age!

[Anonymous]

It's very hard for kids with pervasive developmental delays, or any kind of motor delay, to succeed on intelligence tests. These tests call for manipulation of objects which kids with fine motor delay find very hard to do. The therapists who work with our kids for any length of time know how bright they are. I think that's what is important.

A little story: My daughter's neurologist asked my husband and I for our assessment of her cognition. My husband said "All her therapists think she's really bright." The neuro said "I'm interested in what YOU think, because you see her every day. That's much more important." I really think he's right -- your assessment of your child, esp. at this age, counts much more than a single test.

[Anonymous]

The PP who said a lot of us have been there is so right. I remember getting very similar results from my son's testing almost five years ago. It was difficult, but I took a wait and see approach instead of accepting the results as an indicator of his intelligence and ability. I didn't bury my head in the sand - got him therapy, put him in academic preschool and held him back a year before starting pre-k. Now, in first grade, his strengths are shining through and I am no longer the only one who believes in his abilities. It helps that he is a hard worker and that his school provides services and accommodations as he needs them. I still worry about him a lot and I don't know how far he'll get in school. But, I keep reminding myself that we just have to wait and see.

Best to you OP and everyone else who's been through this.

[Anonymous]

OP that WPPSI test is just a snapshot of where DC is now. Don't ever think that this is what he will be 2, 4, 10 years from now..especially if you are actively working to help him improve. Lots of kidshave issues. Even neurotypical kids can be weak in motor planning or memorization or visual spatial skills. Every child can improve their IQ and overall intelligence. I would see Jake at DIR Support Services in Bethesda. He provided us with home exercises to do to help our own DC with motor planning issues. I bet that if you do a couple of years worth of aggressive therapy, DC's WPPSI score will increase dramatically.

[Anonymous]

OP here. First off thank you so much for all your thoughtful messages and support--especially from those who've been through similar. It really helps to hear from people who've experienced similar situations--none of my dearest friends have kids with issues, so I'm glad to know that hope and optimism aren't misplaced.

Today I'm much better; still sad, but mostly because the "system" doesn't seem to see who my son really is, but all that matters is that his parents do, and his teachers and therapists do.

1:34, FYI--we actually moved away from the DC area last year. (Though there's no equivalent of DCUM in our new state hence why I still come here every day!) But I do think about seeing Dr. Greenspan just to get a real expert's take on the exact nature of my son's ASD.

[Anonymous]

Hi OP. Just wanted to send out a hug to you and your child. Those tests are designed to test neurotypical kids ... kids who tend to view the world in very typical ways and thus score really high. Sample question: Which of these two items is most alike ... a banana, an apple, and a ball. Now ask yourself if knowing the "correct" answer is banana and apple rather than apple and ball (which last time I looked were both round objects and very often red ones at that!!) really says very much about your child's intelligence?! This is an actual question that my child missed and that his teacher and speech therapist made quite a big todo over. Time for a different teacher and therapist was my conclusion!!

It's not that the delays aren't real and don't cause difficulties along the way. Your child may very well catch up a little bit at a time ... the problem is that it makes the school years rough for him AND for you. But hang in there. Remember, would you really trade your lovable child for any other ... even if it made life a bit simpler? No, I didn't think so!

[Anonymous]

Anonymous wrote:Hi OP. Just wanted to send out a hug to you and your child. Those tests are designed to test neurotypical kids ... kids who tend to view the world in very typical ways and thus score really high. Sample question: Which of these two items is most alike ... a banana, an apple, and a ball. Now ask yourself if knowing the "correct" answer is banana and apple rather than apple and ball (which last time I looked were both round objects and very often red ones at that!!) really says very much about your child's intelligence?! This is an actual question that my child missed and that his teacher and speech therapist made quite a big todo over. Time for a different teacher and therapist was my conclusion!!

It's not that the delays aren't real and don't cause difficulties along the way. Your child may very well catch up a little bit at a time ... the problem is that it makes the school years rough for him AND for you. But hang in there. Remember, would you really trade your lovable child for any other ... even if it made life a bit simpler? No, I didn't think so!

Oh yes - I'm the first person who replied to this thread. Another question was to point to the object that someone would use to cook something with. My son pointed to the play kitchen that was in the same room where the test was being given. He was right of course, but got the answer wrong. And then another one was something about a leaf or tree (I forget the exact question), and he pointed to the test giver's blouse, which had vines with leaves all over it. Again - he was right but the answer was wrong.

[Anonymous]

My 4 yr old would've answered the same way. 4 yr olds are quite literal (which is why they tattle on each other b/c the other kid didn't follow the rules).

[Anonymous]

I'm sorry you are feeling sad. I've been there too. For what its worth, when my DD was born, I was told I shouldn't have more children and that she might not walk or talk! This year, this tested the highest in her class on the intelligence tests in school. Nothing is permanent. Don't give up hope.

[Anonymous]

Anonymous wrote:We had 4 yo DS evaluated in preparation for school apps. (He was diagnosed with PDDNOS 2 years ago.)

He scored "borderline" in the Weschler tests of intelligence.

Intellectually, I know the test isn't meaningful for much except finding the right school for him. Intelligence tests done on kids so young aren't indicative of what their intelligence really is (especially since DS has many speech and language issues--receptive, apraxia, etc.), and he might well have different scores when he's older and has overcome some of these issues.

But I'm still sad. On a day-to-day basis, I don't think of my child as a "moron" or an "idiot". (which is what he'd be called based on his scores.) He's smart in his own ways. I'm sad that the evaluations don't allow his strengths to shine through.

But also, now a seed of doubt's been planted. What if? What if this is as smart as he'll ever be? (He reads a bit--mostly self-taught.) What if on top of his ASD, he's mentally retarded?

Thanks for letting me vent.

PP I have a 4 year old ASD kid as well. He is high functioning as well and his evaluations were always very tricky with cognitive development scores that varied greatly depending on which test was used. That is why I declined to have him undergo an IQ test at this early age. I know his score would likely not reflect his capabilities and I refuse to reduce him to test scores.

You son is reading already? He is teaching himself? those are all great signs of prgress to come and of the ability to acquire new skills which is the most important thing for children with ASD or delays.

No more what ifs. Just continue doing the best you can for him and monitor his progress. It sounds to me like he is doing very well and that within his diagnosis he is one of the lucky ones who are able to gain new skills. I was in your place at some point to (it took my son several months of intense speech therapy and other intervention to say "yes" rather than using echolalia.) I thought the "what ifs" all the time and then suddenly he started doing it.

Just disregard the IQ tests for now. I just took two different tests to see how I would score and I scored one at 133 (yea, right) and one at 110 (more likely) so you see there is a great discrepancy although the questions didn't appear to be much different. It's just not helpful to get hung up on such evaluations.