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    Joined: Aug 2012
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    BrandiT Offline OP
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    Let me tell you, parenting sure has been an adventure. I have two vastly different children. My daughter is more typically high achieving. I suspect she may have ADHD, but overall she's extremely academically advanced and at seven years old is doing fourth grade work. She's got all the intensity, inability to sleep, high activity, good at almost anything she does, etc.

    My son.. is completely different. Kind of. He has moderate to severe delays across the board. At five years old (yesterday!) he is still mostly non-verbal, has muscle tone issues (hypotonia), etc. The school is trying to label him as severely 'intellectually disabled'. The thing is - he was humming songs when he was under a year old. He has known his alphabet since he was two years old. He knows numbers through 20 (At least, possibly more), colors, shapes, etc. But, the thing is he's super inconsistent. As his mother, I work with him a lot and see what he knows, but a psychologist at the school gives him a single test and gives him the most absurdly low 'number', basically indicating he is a vegetable. I am not trying to sound horrible with that, but it's laughably low if you actually know him. He is a great problem solver, he gets what he wants, he recognizes songs within a few bars, he loves music.. His asynchronicity is so severe and all they seem to see are the challenges. Maybe he IS 'intellectually disabled', whatever, I am not going to love him less.. but how do I explain early eye contact, smiles, the memorization, the humming of tunes, etc? I find it impossible to believe he has 'slow processing speed' by the things I witness. He's had genetic testing, which all came back negative, he had an MRI which showed no abnormalities except moderate (they say it should not cause issues) swelling with his pituitary gland. He's not a small kid. As far as Autism testing goes, we got a 'no, not really' verdict, saying that mostly he has physical and sensory based issues, but they don't actually believe he's Autistic.

    So.. I guess my question is, has anybody else had kids with such huge differences? Have you had a child with such severe delays that eventually "caught up"? I see the fire in his eyes, I see those 'splinter skills'. I am frustrated to see them act as if he's just got low potential. I don't believe it. I am a realist. I don't think my children are 'perfect', but nor do I want them to ignore his potential.

    Thoughts from my other outlier parents?


    Z - 01/23/11 and O - 05/12/13
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    My oldest son started in birth to 3 program (hypotonia, gross and fine motor delays, self help delays, speech delays, expressive language delays) ESE preschool (developmentally delayed, selective mutism for 1.5 years, speech delays, anxiety), the last year of ESE preschool huge gains, regular K, continued speech and OT therapy, Aspergers dx age 8, entered gifted program 6th grade (this is after several early IQ tests of 100 or below when I knew he was most definitely very superior 2e), and is graduation in two weeks 3rd in his class of 600 students headed to a highly selective prestigious college.

    I worked really hard to meet his needs but I always knew my evaluation of him was spot on. I knew that eventually they would see what I saw and it did turn out that way. I worked simultaneously on making current problems less of a problem as well as always looking forward to what will he need in the near future and long term.

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    aeh Offline
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    Big picture preface: I absolutely agree that you know your child better than any professional who doesn't live with him, and that you should do whatever makes the most sense for your family to give him both the challenges and supports that he needs to develop according to his own needs.

    As someone who has given these evaluations to children with developmental delays (and there is a reason the developmental delay category exists--so that children with genuine delays, not "delay" as an euphemism for long-term impairment, can receive needed interventions without a permanent label), I've generally tried to convey evaluation results in very young children as "state" rather than "trait". IOW, this is where this child is functioning right now, under standardized conditions, which has implications for their service needs -right now-, but shouldn't necessarily be viewed as locking in their long-term trajectory. At just five, federal special education regs allow for remaining under the developmental delay category. It may be that your state ends the use of that category on his fifth birthday, which is why they may be introducing a new disability classification.

    The determination of a disability must be based on multiple measures, so certainly, it is legitimate to ask what the other available data, outside of the cognitive, says about the appropriateness of intellectual impairment as the disability. Presumably, other data was collected.

    As to catching up...it is not uncommon for children on the autistic spectrum, and children with communication disabilities, in particular, to test much lower early on than they do later in childhood or in early adolescence. I routinely see ASD students whose historical cognitive numbers show a steady rise from their preschool assessments through the last assessment I give them before they leave high school. Some have dramatic rises of multiple standard deviations. These aren't the only two disability types that have these kinds of changes. The big picture is simply that very young children don't have very testable behavior, and therefore don't have very stable test results; it's easy to low ball them.

    At the same time, keep an open mind about the current value of the testing data. These tell you how your child performs under standard conditions; school is full of standard conditions, so there is relevance to performance in the conventional school environment. Of course, you spend much more time with your child, and your relationship is such that you are both more alert to his demonstration of skills, and a safer environment for him to display those skills. That's normal, and good. But it doesn't mean his failure to demonstrate those same skills on-demand for a relative stranger should be discounted.

    And please don't be discouraged by this, but objectively, I should note that most of the skills you've listed are memorization-related skills. I'm not saying that he doesn't have more abstract problem-solving skills, but the specific academic-related items (knowing letters, numbers, colors, shapes, and memorizing tunes) named could all be explained by a strong rote memory, which is not incompatible with low cognition. Nor is being able to effectively manage his social environment to get what he wants.

    The reality is, development can take many different twists and turns, so that what he needs right now for educational interventions may not be what he needs in the future. How he presents now may not be the whole of how he presents in the future. And how we define ability can be much narrower than the true scope of human giftings. He may have academic and/or intellectual challenges, and yet also have musical and interpersonal gifts. Or he may have cognitive gifts too, but obscured by other challenges. Regardless of how his "true" learning profile looks, he is certainly always capable of learning more, and of benefiting from expectations that move him to the next level.

    And on a side note, even individuals with IQs in the 50s can be functioning adult members of society, living happily and independently on a day-to-day basis, and holding meaningful employment and relationships. They are very far from vegetables. (I know you didn't mean that literally, as in a vegetative state, but I just wanted to clarify this for the record.)


    ...pronounced like the long vowel and first letter of the alphabet...
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    I have a child with severe physical disabilities and learning disabilities. They are indisputably due to an obvious birth defect, so we do not have the added complication of not having a proper diagnosis, but the spectrum of physical and mental impairments for this diagnosis is so vast, the outcome is still very much “wait and see” for these kids.

    He was mostly non verbal until the age of 3, struggling through the day with about 6 words, a lot of eye contact, facial expressions and pointing and 2 signs he had learned in special needs preschool (and only used when in distress, and he refused to use more).

    People who knew him well were cautiously optimistic about his verbal and cognitive development, but it was impossible to do proper assessments of either. Frankly, I didn’t even listen whenever anyone tried. I was completely sure that his cognition wasn’t impaired at all and his speech was impaired massively. In fact, it was *I* who pushed for speech therapy at 2.5 when the specialists still tried to tell me that being nonverbal at that age was still in the range of normal and that we just should frustrate him more so he’d have more of an incentive to use his words. (I actually insisted that it wasn’t normal for MY kids, his older siblings having expressed themselves at that age in complete grammatically correct sentences including tense and mode...you can guess how well that went over...).

    The speech therapist though bore me out, she assessed his receptive speech as completely age appropriate but his use of expressive speech as clearly impaired (and that he was already plenty frustrated about it, thank you very much) but progress was agonisingly slow. They were planning to start him on Facilitated Communication in his special needs preschool.

    Then suddenly he started speaking at just under 3.5 and walking at just under 4. Sudden “language explosions” aren’t a myth, they do happen. He improved by the hour, it was fascinating. And it was almost as fascinating to watch how the verbal and physical development interacted with socio-emotional development and his expression of cognitive development. He went through his Terrible Twos at the age of four - what a difference it makes to have so many more options to express your needs and wants or your displeasure, and to follow your interests physically.

    When he was assessed at 4.5 for mainstreaming, he scored in the 95th percentile on cognition. Still 50th percentile on verbal, but they told us it was about lingering articulation issues, grammar and vocabulary were off the charts. 50th percentile on socio-emotional development, and that one remains a concern, as well as a strong delay in graphomotor skills, both of which precluded his starting Kindergarten in spite of the cognitive assessment.

    Seriously - we knew. I swear you can see the wheels turning in the pictures my DH took right after the C-section. It’s good to know he ca;show it now, but he still has a ways to go before he can function in a standard settting, the way aeh describes.

    So, miracles do happen. (Medically speaking, he shouldn’t be doing what he is doing). If I were in your shoes, I’d continue to trust my instincts and assume he couldn’t express what he can do. But it also means you need really place an emphasis on his options For expressing himself, with Facilitated Communication if need be, because the time to learn how to express himself to people he doesn’t know is right about now. Best Wishes!


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    So, miracles do happen. (Medically speaking, he shouldn’t be doing what he is doing). If I were in your shoes, I’d continue to trust my instincts and assume he couldn’t express what he can do. But it also means you need really place an emphasis on his options For expressing himself, with Facilitated Communication if need be, because the time to learn how to express himself to people he doesn’t know is right about now. Best Wishes!

    I LOVE this!!!


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