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Need help!
Nov 13, 2018 10:28:19 GMT -5
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Post by eboyko01 on Nov 13, 2018 10:28:19 GMT -5
Hi, I’m new here. Looking for advice regarding my son. It’s a long story. My son was late to talk. I wasn’t too worried about it because it runs in my family (me, my dad, my oldest son). I did take him to be evaluated at age 2 years 3 months by Child Find. He was found ineligible for services. I took him back a year later because he still was not really talking much and definitely behind where a three year old should be. At that point he was found eligible for services under Developmental Delay. They told me his speech scores had regressed more than they’d ever seen. He started in the special ed preschool class at age 3-1/2. He is now five years and 4 months and still in preschool, as I am waiting until he’s six to send him to kindergarten. When he was 3 years 9 months I made the mistake of taking him to a private psychologist and she administered an IQ test that gave him a score of 58. At this point my son could barely have a conversation. He didn’t cooperate at all. But I’m traumatized by that score. At age 4-1/2 I took him to Nashville to see Mary Camarata, one of the best speech therapists around. He was diagnosed with mixed expressive and receptive language disorder. She tried to administer a nonverbal IQ but he wouldn’t cooperate. He’s very strong-willed and stubborn and doesn’t like non-preferred activities. Mary however said he presented as a child with an average IQ. Well last year in preschool he was given the Battelle developmental test, and his scores were really awful. Most in the 60s and 70s, with adaptive being average. Cognitive was 57. He was just administers the same test this year in preschool. Adaptive is solidly average (93), other scores went up a little bit, but cognitive still 57. His teacher said she doesn’t at all believe that’s a true reflection of him. He didn’t cooperate, he had refusal behaviors etc. I just can’t stop worrying about these scores. He has never struck me as being low intelligence. He’s for sure quirky. He can read lots of words, he knows how to spell all his classmates’ names, he has an amazing memory, he is really good with patterns. His teacher is unimpressed and said he’s a good memorizer. He actually strikes me as pretty smart in a lot of ways. Autism was ruled out by several professionals. He hit all his baby/toddler milestones on time except for talking. His expressive language has gotten much better. He can carry on conversations but probably still behind where a five year old would be. I know his receptive language is still low and those tests are all language based and the teacher can’t reword anything bc it’s standardized. My son’s self-help skills have been fantastic since an early age. He’s extremely independent. My concern is when he is re-evaluated in 15 months, he will be given an IQ test by the school district that is language based and they will think he’s ID. But at the same time, due to temperament and behaviors, he won’t even cooperate for a nonverbal IQ. Has anyone been through this? I just worry every day about whether he’s ID but I really don’t think he is.
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Post by bros on Nov 13, 2018 12:18:17 GMT -5
Have you taken him to a neurodevelopmental neurologist? That could be of help.
It might also be worth taking him to a neuropsychologist. One that specializes in children with disabilities.
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Need help!
Nov 13, 2018 13:04:54 GMT -5
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Post by eboyko01 on Nov 13, 2018 13:04:54 GMT -5
I just worry about spending money when he really doesn’t cooperate for testing.
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Post by healthy11 on Nov 14, 2018 9:20:53 GMT -5
eboyko01, welcome to our forum. It certainly sounds like you've had your hands full, both with typical parenting demands of having a preschooler, and with learning all about the special education system. Although my son is older now, I recall how his first IQ tester's report said something like, "this may not be an accurate estimation of his abilities because he was inattentive at the end of the tests." My son's profile is much different than your son's, as he was very verbal but refused to sit quietly and do written tasks, but my point is that the evaluator made it clear that anyone else reading the report wouldn't assume my son was "just a number." Did Mary Camarata's report reflect her belief that your son has average abilities? Did she give you any other resources (ie, therapists or doctors that might be familiar with other children who have profiles similar to your son?) Is Ms. Camarata willing to see your son again at some point in the future to try and re-administer testing? Is there a "children's hospital" in your state that might have more specialists? Although your son is "strong-willed," does he cooperate better with you and people who become more familiar to him, versus strangers? (I'm wondering if he developed a rapport with an evaluator, like through visiting a therapist's office several times before trying to test him, would they be able to complete a non-verbal test with him? If you explain to him how important it is to do what the evaluator asks, would he try?) I do feel as if parents know their children best, and your son definitely sounds like he's more capable than current testing numbers have shown. I wish I had better advice, but at this point, I do know he is clearly fortunate to have you "on his side."
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Need help!
Nov 14, 2018 10:01:28 GMT -5
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Post by eboyko01 on Nov 14, 2018 10:01:28 GMT -5
Mary Camarata thinks he has average intelligence but wasn’t able to test it so it’s not mentioned in the report. She is mire than willing to retest him and try again, but she thinks we should wait until he matures more. I just cry every day because I can’t accept that he’s ID and what that will mean for his life and how I will raise him. Wouldn’t there be other signs of a disability like that?
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Need help!
Nov 14, 2018 10:04:32 GMT -5
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Post by eboyko01 on Nov 14, 2018 10:04:32 GMT -5
I guess I’m just worried about taking him to more evaluators. It’s just so stressful and I feel like we never get accurate results. I do think the MERLD diagnosis is accurate. I’m not sure my son would care if I told him how important it is to cooperate. He doesn’t have a good attention span. I just wonder - if someone has an IQ in the high 50s, what does that look like?
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Post by bros on Nov 14, 2018 12:16:19 GMT -5
I guess I’m just worried about taking him to more evaluators. It’s just so stressful and I feel like we never get accurate results. I do think the MERLD diagnosis is accurate. I’m not sure my son would care if I told him how important it is to cooperate. He doesn’t have a good attention span. I just wonder - if someone has an IQ in the high 50s, what does that look like? It is very much case-by-case - especially if they score high on adaptive measures - students with IQs in their 60s, with a high adaptive score, could be in mostly gen ed classes through 5th or 6th grade.
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Need help!
Nov 14, 2018 13:01:10 GMT -5
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Post by eboyko01 on Nov 14, 2018 13:01:10 GMT -5
I thought one wasn’t ID unless they had both low IQ and low adaptive scores? I just worry my son will never leave home, never be able to do anything.
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Post by healthy11 on Nov 14, 2018 15:47:08 GMT -5
I don't have personal experience with MERLD (Mixed expressive-receptive language disorder) but it seems like there may be additional issues involved. Still, there is NO way to tell what the future holds, for us or any of our children. I'm reminded of a member who no longer posts on this forum now that her children are grown, but she was distraught at the time because so-called "experts" said her daughter, who had significant difficulties with math, as well as ADHD, "wasn't college material." Although it wasn't easy, and it took time to find an appropriate medication to help with her daughter's attentional issues, and some convincing to have schools substitute a few classes, the girl recently graduated with her Doctor of Physical Therapy, passed her state board exams, and is now working in her chosen field and living on her own. Testing with younger children is always considered more variable, and less reliable, than that of older individuals. Unfortunately, testing is often the basis for services that a school provides for students with learning differences, and your son's inability or unwillingness to complete the steps of any evaluation is a concern. On the other hand, your son having a good memory is clearly an ability that many children don't have. We've talked about some of the challenges your youngest son has; what are some of his favorite activities/ things he does well? You also mentioned that talking later "runs in your family," and that you've also got an older son. Can I ask how much older he is, and if he shares any other "traits" with your youngest son (ie, not having a good attention span?) Is your older son doing well in school now? How do your boys get along? (Is your older son patient with your youngest/ does your youngest try to emulate his older brother?) Who do you think your youngest son "learns from" the best? Is he respectful of his preschool teacher and typical in terms of his behavior/interactions with classmates? (I know most preschoolers don't have great social skills, but is your son able to sit next to his classmates without pushing/shoving?) Would homeschooling be an option? There are so many factors that go into a child's personal growth and development, and success in school and in life. I did come across another forum where parents were discussing MERLD vs. Autism, and you might find some additional information/ insights from reading their posts: community.babycenter.com/post/a60782200/merld_vs._autism
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Post by eboyko01 on Nov 15, 2018 5:45:50 GMT -5
I actually have four sons. My oldest is 14 and was a late talker but he had an expressive delay and never required therapy. He’s in 9th grade, is musically gifted, and does well in school. My 13 yo son talked on time and is academically gifted. Then I also have a son who just turned two on Halloween, and he has a lot of words but he’s not really putting words together yet. Not too worried about him yet. My five year old with MERLD has actually improved quite a bit with expressive language and Mary Camarata feels it’s catching up. The receptive language is still an issue. Things he likes to do - anything active. Loves playgrounds, running around, riding things, playing basketball with his indoor hoop, playing catch. He likes puzzles, like 30-some big pieces. He loves letters. He has many many sight words but doesn’t yet carry them over, reads them on flash cards. He loves spelling his classmates’ names. And he’s just recently begun some more imaginary play. This was something he never did before. And he really likes playing with his little brother. He also has just taken an interest in coloring, a bit of drawing, and writing shapes and letters. He is in OT. A few months ago all he could write was his name and a circle. Now he’s writing lots of letters and numbers and has finally caught on to coloring in the lines. He attempts to write his classmates’ names. There was a lot of concern bc he didn’t hit benchmarks like drawing a face or a person but now he’s starting to. Also a concern was that he didn’t have a dominant hand. It seems clear he uses his right hand to write, although I notice he throws with his left. There is also concern bc he wasn’t crossing the midline but very recently he’s started to a little bit.
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Post by eboyko01 on Nov 15, 2018 5:49:04 GMT -5
And yes, he definitely shares traits with my oldest. My oldest was extremely strong willed and stubborn when younger bd that’s how my five year old is. They do get along for the most part but with such an age difference they don’t do a lot together. My five year old’s behavior at school is good for the most part. There have been a few issues but they seem to have resolved. He absolutely loves school. He seems to learn at his own pace and won’t do anything until he’s good and ready.
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Post by eboyko01 on Nov 15, 2018 5:50:53 GMT -5
And yes, he sits in circle time fine, sits at lunch nicely etc. The one issue is sometimes during an activity he will just leave the work area and go somewhere else in the room. The teacher is able to get him back and focused.
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Post by eboyko01 on Nov 15, 2018 5:55:52 GMT -5
He has the most difficulty with abstract concepts, which isn’t surprising since his language is still catching up. As I mentioned, his expressive has gotten much better but he doesn’t yet ask questions like “why” or “how” and he can’t answer those either. Still trouble with open-ended questions. He had an amazing memory, possibly even photographic, which is something my 14-yo seems to have too. My five yo’s teacher just brushes this off as him being a good memorizer.
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Post by bros on Nov 15, 2018 11:13:47 GMT -5
When I was his age, my verbal IQ was around 85, performance IQ 69.
Now my Verbal IQ is 122, performance IQ 97.
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Need help!
Nov 15, 2018 11:54:54 GMT -5
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Post by eboyko01 on Nov 15, 2018 11:54:54 GMT -5
He can’t even yet get scores that high.
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Post by bros on Nov 16, 2018 12:16:36 GMT -5
He can’t even yet get scores that high. I was able to sit for the whole test, which was split over a few days because attention and other issues. He'll get there. He has an IEP, right?
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Post by eboyko01 on Nov 17, 2018 7:22:15 GMT -5
Yes, he’s had an IEP since age 3-1/2.
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Post by bros on Nov 17, 2018 12:21:13 GMT -5
Just making sure.
Just so you know, you can request a full evaluation from the district every 12 months - they don't have to grant it, but given his issues with taking the test in the past, they may grant it. Then when they screw up doing it, request an IEE (Independent Educational Evaluation) and the district will have to pay for you to take your kid to whoever - maybe that SLP might know a good neuropsychologist
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Post by jisp on Nov 19, 2018 8:04:16 GMT -5
Hi chiming in a bit late. I am a parent of young adults now. I am glad to see you have the perspective of parenting an older teen who is finding his talents and passions. As you have seen children's development is complex and not everyone fits nicely into the curves of "normal". It sounds like there is some genetic component to this given the pattern with your other children resulting in a complex mixture of giftedness and disabilities. From what you write you sound as though you are both concerned but also feel as though the testing does not reflect who your little boy is and you believe he is not at all intellectually disabled.
It sounds like you are schooled in the various flaws and challenges with IQ testing. It can be a land-mine with a complex child and the numbers certainly do not reflect everything. I am glad to hear you have at least one "angel" with Mary Camarata. I would remind yourself of her comments every time a little panic sets in because it sounds like she is somebody you trust and also somebody whose opinion of your son meshes with your gut.
As for testing with the school a few things to remember: By law the school can not administer any test to your child without your approval. They might try to bully you into having them test your son but unless they are administering a test to every child if the test is part of a special education screening then you need to be informed of it and sign form giving them permission to administer the test.
Have you considered looking into more play based child led learning environments for your son. Kindengarten and first grade have become overly academic in the US in the past couple of decades and sadly it means that for many children whose development doesn't mesh with this, they find themselves experiencing failure and frustration from an early age. A more progressive kindergarten might be able to support him as he gets therapy to catch up with his language delays while allowing him to explore and grow his talents and abilities.
At the end of the day I would trust your mom-gut. I have a son who faced many uphill battles. We were told many things about him and his future non of which turned out to be true. Looking back the one trait all my "angels" ended up sharing was that they not only saw the areas where my son struggled they also saw the areas where he shined and were as determined as we, his parents, were to make it possible for him to access his strengths.
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