Gifted Issues Discussion homepage Forums Twice Exceptional Still having problems (update)

Hi, I posted last year about my son in this thread: http://giftedissues.davidsongifted....dvice_on_Giftedness_Aspe.html#Post151795

Just an update on our life and troubles now that my son just turned 4 and most of the school year is thankfully over.

The IU hounded me about signing him up for a preschool and how if I didn't I would be pretty much permanently ruining any chance of him making the early progress needed for his long term success. To make a long story short I eventually caved in and signed him up for a Montessori school in August where they assured me they have had special needs students with HFA before and were looking forward to teaching him. I chose to do 3 mornings for a total of 9 hours a week.

At the same time I tried again to get TSS services approved for him from our wraparound provider (who at that time was only providing us one hour of mobile therapy a week, so I'm using the term provider liberally). I was denied again as his behaviors were not deemed problematic enough. I was told he would need to be observed in the classroom and a TSS would be added if needed after a proper behavioral observation period.

We also had him evaluated at a local place for OT around the same time and he has been getting 2 hours a week from them since August. His main issues are vestibular, auditory, and tactile.

At any rate, school started and he had his mobile therapist for an hour and an SI for an hour through the IU each week. Well it didn't take long for everyone there to realize he was not able to be functional in the school environment. IU and wraparound blamed my choice of a Montessori school and the school seemed completely baffled by his behavior. He was non-compliant, would end up spending huge periods of time crying, wanted to be alone all day in the book section, hid under tables, and became aggressive to the staff as well as other students.

Got a BSC assigned, then in December after tons of phone calls and evaluations finally got TSS assigned for all 9 hours of school. Since school started we got the IEP changed twice, got speech moved to the school, and just today finally got the 45 minutes of OT I have been fighting for since he turned 3.

Also today I heard that the other kids are terrified of my son because he pushes and hits and that he is still not able to participate in circle or really do anything meaningful in school other than writing numbers. And his speech goals are being changed because he is not able to muster up the minimal social skills needed to even start a conversation with another kid, let alone engage in verbal exchanges.

Most infuriating to me of all (well, other than my son hitting other kids) is the IU's continued insistence that he is good at academics due to his ability to memorize facts.

We don't really teach him a lot at home, but the other week I was laying in bed trying to half sleep another 10 minutes and I told him about multiplication for the first time ever. After two sample problems he was able to solve a bunch of them no trouble. How is that memorization if I never told him the answer?

He reads at a strong 1st grade level and loves to listen to us read. Right now we are reading him "The Sasquatch Escape" and he not only is very attentive when we read, but he discusses the story. We feel very certain he has reading comprehension at the same level that he is reading at. He also asks tons of questions about the stories in the books that he reads and talks about the motivations of the characters.

He's not doing a whole lot more academically than he was the last time I posted as we are so worried around here about behavior and school we don't tend to teach him much lately. Whatever we do teach he picks right up on it.

His ability with addition, subtraction, and number manipulation is pretty amazing to me and he is able to do most of the stuff considered average for a 7 or 8 year old. He loves to do mazes and to draw his own. He makes huge complex mazes and even adds fun rules and one way directions and such. His writing is fantastic, especially his numbers. His spelling is typical for someone spelling phonetically, he recently wrote on a card "happi brfda". I would argue that if he was so great at rote memorization he would have just pulled that common phrase out of his visual memory and written it correctly.

His latest obsession has been Legos and he is able to build the 7-12 kits with no trouble. We just help him find the pieces in the piece bin and he is quite able to follow the the instructions and build all of his rather extensive sets. He would spend his whole life on math, reading, mazes, and building things if we let him.

I'm still annoyed that there is no recognition of his talents and that they are still putting it all down to memorization. I have no idea if he is gifted or not, but I know he is a very smart kid. And I mean separate from all of the academic stuff he can do, he's just very smart in conversation and asks really good questions. He's always asking questions and eager to learn.

On his IEP it says he can rote count to 60 and correspondence count to 30. That's all it says about his abilities in the whole thing. And it's completely inaccurate. He rote counts well into the thousands and has such a firm grasp of correspondence counting I'm not sure why it would even be considered to be something to do up to a certain number. The other day he saw a grid that was 8 across and swiped his finger along it and told me that 20 of the spaces were filled in. He did this by adding 8 and 8 and 4, just like I would have. I know how he found the total because he said "Mommy, did you know that 8 plus 8 plus 4 is 20?"

Still no one will give him an IQ test due to his age. I'm really not looking for anything super accurate, just enough to show that there is a serious issue here with his social skills being so low and his cognitive skills being so high. I'm tired of being told that he just memorizes facts because he's autistic.

I'm very discouraged right now as my son is in a bad place at school and just like I had predicted was not ready and ended up picking up tons of negative behaviors to help him cope with the very difficult environment of school. I feel bad that I listened to the IU again and like I just made my sons life much worse. I'm contemplating removing him from school as I don't like the way any of this is going.

Sorry for the huge post, but I'm so frustrated and upset right now. The school told me today that the other parents are upset and complaining because my kid is hitting and pushing their kids and they are scared to come to school. I was told that other parents might not enroll their kids next year if my son returns in the fall. Obviously, they don't want him there. It makes me want to cry that I am driving him to a school tomorrow where he isn't even wanted. At least he has his TSS there so I know someone is looking out for him.

My son was given a ASD classification right before the age of 3. They wanted me to place him in a self contained ASD class with all non verbal kiddos. They tried to tell me that everything he knew was rote memorazation. That he was hyperlexic, as well as having an IQ of 72. Instead we fought for a regular developmental delayed placement for prek. We hired a private BCBA, got control of problem behavior by implementing everything in writing for him. He was not hyperlexic. He could follow all rules and changes as long as it was clearly written on paper. BCBA trained husband and I, we signed up for every free ABA/VB site and also took web based classes. Once the aggressive bevaior was in check he took off. We did a VB prek program summer before K to brush up skills.
Fast forward to now.. Mainstream K,142 IQ, and the school which has never had a child in gifted before grade 3 is in process of figuring how to implement gifted pull out or enrichment for grade 1. Follow your gut with your child. If I had listened to the school system 3 years ago my son would be considered very low functioning at this point.

I think a lot of what you are seeing is pretty common for kids with ASDs. Other people (strangers, as far as your son is concerned) are not going to "get" him or understand the scope of what's going on in his head. That's why it's so important to get together a good team of professionals around him and stay consistent with his treatment. He will eventually begin to see them as trustworthy and open up to them. Honestly, I wouldn't even engage with any of them on the academic front at this point. He's not in school in any real sense of the word yet. They are likely only testing him on the handful of things they test all 3-4 year olds on. (Count to 100 for me, what color is this? etc.) They aren't going to continue testing him until they reach the end of his knowledge - they simply want to know what box to check on their eval form (child knows 0-5, child knows up to 20, child knows up to blah, end of options.)

If you and your kiddo don't like/trust the team you've got now, work towards getting together one you both do like and trust.

Thank you very much for your responses. I guess what bothers me most is that I feel that by treating him like he is "autistic" rather than like he is smart seems to be making his behaviors worse. The whole clear, concise directives thing for instance. I know I would not comply if someone said "pick up" loudly and pointed to something on the floor. At home I would say "Sweetie Pie, please pick up that book that fell on the floor so that no one will trip and fall if they step on it". Guess who he listens to? No one wants to be ordered around or talked down to.

At school I know he is bored. I know that at home you allow boredom to occur in my child at your own peril. I have to keep him occupied all day or he ends up destroying things or just running around yelling numbers at the top of his lungs. At school they won't teach him new lessons because his behavior isn't good enough. He's not allowed to use any material he hasn't had a lesson on. He's basically able to choose from some pouring activities, color boxes, and just recently a number writing activity. Now he writes numbers all day at school. But when that gets too boring he starts up with the behaviors again.

His school is very particular about the right way to do things or use classroom material and he is always trying different stuff with it or using it in non-functional ways (according to reports). I guess I thought Montessori would be good for a kid like him and they went on and on about how the school was founded to educate children with disabilities much like his.

I can't imagine how bored he must have been for first 3 months during which the only options he had for materials were color boxes 1 and 2, especially since he has known his colors since 12 months.

I really think that not getting a full understanding of a child's cognitive skills is detrimental to treating them. I also think the school just doesn't like all the extra bother and just want him out of the classroom. We just had an FBA done there in January covering 4 weeks of observation and they found that he had 0-8 behaviors per day with a mean of 2.3 per day. Of those most were escape/avoidance, followed by whining, and most rare was aggression. Basically he is hitting or pushing less than once a day. Don't some typically developing kids do that as well?

He's at school right now and I was so upset to leave him there today. Before he went to school he was writing sentences. His paper sitting in front on me says "It is snowy today". At school he is in a confusing and hostile place where the only escape is to sit and write numbers on his 100 chart. I'm not worried about him not learning at school, he doesn't really need to learn any faster than he already is. I'm concerned about the lack of appreciation in general and especially the fact that they treat him like a behavior problem who needs to comply happily with every adult directive while in a boring and unrewarding environment.

I don't want to school to do an IQ assessment. I'm sure they would find exactly what they expect to find. I've looked around for private testers, but none will test till 5 or 6. Plus with the autism thing I am not even sure who would be qualified to test him. I would be happy to just keep him home next year, but already his wraparound people are all over me about picking something better for next year.

I know social skills are important and need to be practiced, but aren't there lots of ways to work on social skills outside of a classroom? I plan to pick back up the activities we quit in the fall, music and gym. We do an indoor playground place frequently in the winter and with spring coming playgrounds are almost back on the menu. If anyone was really worried about his social skills I would think he would get some services addressing that area, or a classroom. When did throwing socially immature kids into an impossibly overwhelming environment become the best way to treat HFA?

It seems ever since he was 10 months old and clearly different from every other kid (both socially and academically) I have had nothing but questions and no answers. Everything is always wait and see. I am an answers person. The entire year from 1-2 that I worried about him but was reassured by the pediatrician, the following 6 months when I was waiting for our appointment to find out if he was autistic, from that day at 2.5 when they said he is autistic until now at 4 wondering if he is just autistic or autistic and gifted. And now another year or two more to wait to answer that question.

I honestly am so sick of waiting and wondering and therapy and all of the negativity most days I just want to call and cancel everything and never leave the house again. My son is a beautiful, happy, and very sweet kid. I don't even know this kid they seem to have at school. I'm going to pick him up now, I hope today's report isn't too harsh and that the stares from the other moms aren't too difficult to ignore.

It seems lie this school is a poor fit and I would keep him home until you figure out an alternative. There are others with much more relevant experience but I think it would be worth seeking the opinion of an expert really good at understanding potentially 2e kids (Dr. Amend in KY?) to help determine what is going on with him.

I wonder if it would help to find a preschool that is play-based so that the emphasis is on social skills, and there would be no boring cognitive/academic stuff for him to be forced into. I remember my kids at that age and thinking that I'd rather have them just play all day at preschool than be forced to "learn" the alphabet or numbers yet again.

We had an IQ test done on DS when he was 3--the neurodevelopmental pediatrician gave us a referral to one of the psychs with the same Children's hospital. I don't think it was all that accurate since DS wasn't that cooperative, but it can be done. They weren't trying to figure out if he was gifted though. It was more an evaluation of delays (in his case speech and motor).

That school does sound terrible. Restricting what he can and cannot play with and HOW is pretty ridiculous. I mean, playing with things in a non-traditional manner is pretty much a hallmark of ASD.

Er-- honestly? Playing with things in non-traditional manner (at least not an 'age-normative' one) is a hallmark of a LOT of non-NT kids.

It doesn't sound like a positive environment for gifties any more than for ASD children.

Play-based might be better, as someone else noted-- assuming that the adults in the support team can focus on "getting" your child, and less on restricting him, at least for the moment.

This Montessori school sounds a lot like one of the schools I visited. Within 10 minutes, I wanted to leave the tour since I knew it wasn't going to work for DD. There is an article I read about a gifted boy on the spectrum who went to a Montessori school and if I recall correctly, I believe by the time he graduated Elementary school, he was ready to go to college but not all Montessori schools are created equal. Your son's current school isn't meeting your son's needs and it doesn't sound like they are willing to change their approach to make it an appropriate placement for him.

Here's what I think based on the above:

--at this phase, remediating the most obvious aspects of the autism (especially the aggression) is as important as-- maybe more important than-- serving the gifts.

--a play-based preschool is not likely to help remediate these issues and will probably stress your child out or isolate him, neither of which is useful. I'd want to find a preschool that offers specialized instruction that includes children with special needs. No, NOT the non-verbal classroom, but the only appropriate placement is one where someone has the skill set to teach what your child needs. This includes circle time skills, transitioning between activities, and anger management. All teachable, and all critical for later schooling.

(One of our children attended a preschool that was 1/3 Head Start kids, 1/3 children with disabilities, and 1/3 other kids from the community. With a TON of specialized staff. It was awesome, and an appropriate placement for learning those kinds of skills.)

--does your child have an IEP through the IU? If so, he is entitled to services and supports, not just some random preschool placement.

--what we found most useful for DS11 (2E/autism) was an ABA program at home that was targeted specifically to skills he needed, and then an IEP at school that required them to teach and generalize the same skills.

Once again, thank you everyone. After reading all of this and thinking a lot I've decided to look right away for some place for him to finish the year and work very hard to find something right for him next year.

I specifically chose Montessori to avoid the play based stuff because I was sure in a room full of toys and kids he would be lost. His play skills aren't very good and I thought all of the learning material at his school would really appeal to him. And it has, he just can't use it as he hasn't had lessons on it yet. I was also worried that in a play based environment he would just do non functional stuff in his own space and not really get anything out of it socially or academically.

I'm definitely going to look into a preschool like you used DeeDee. My son does have an IEP, which at this point has gotten so huge the print is now bible sized, lol. The IU has flat out refused any IU preschool placement for him as they don't have the right fit. I guess since preschool is not officially a required grade they don't have to provide anything? They basically said find a local preschool and we will see him there. They also said that all the behavior problems usually disappear when Mom is out of the room. That worked out well obviously.

We have not had any success getting any ABA therapy. We have been told that he is too high functioning to need it. Wraparound was so hard to get to begin with and I think that they think it's ridiculous that I think my son needs services. Not his therapists themselves, the doc who does the recommendations and evaluations.

My son looks pretty normal in a 30 minute observation. In fact I think that most people who work with him doubt his diagnosis. I don't think there is a lot of experience with highly verbal borderline kids. During his initial evaluations he scored right at the cutoff on everything, on the autism side on half and on the NT side on the other half. Even I have trouble figuring him out sometimes. He can tell us all about level planes and angles needed to build elaborate structures, but he rarely even asks for food when he is hungry.

As his mom I just want to see him happy and successful at whatever he chooses to do. Thank you all so much for your insight and advice, it's great to be able to talk to others who have already been through this rather than just "experts."

Our district has integrated preschools--about half the kids were on IEPs, and half were "regular" kids from the community. It was hard to tell who the "special ed" kids were, most of them seemed borderline. The more severely impaired kids were not in these integrated classrooms, for the most part. The big difference between them and "regular" preschools was the fact that the integrated classrooms had a lot more staff, like aides/paraprofessionals/special ed teachers. So that they could work with kids on the goals in the IEPs.

I hear what you're saying on play-based preschools, I think what you need is something that is highly structured, but does not force academics that are way too easy for a large part of the time. So if the preschool has learning centers with something that even an advanced child could enjoy, that would probably work well. The integrated preschools that my kids were in had a mandatory parent day where where parents were supposed to stay with their child and do the centers with them, sit with their child in circle time, etc. I think that helped the kids (even the typical ones) learn what was expected of them.

Hi, (just my opinion) but I say always follow your instincts and trust your gut. Don't worry about whether the child is officially labeled gifted or not, proceed working on your areas of concern -- asynchronous development, how to balance everything. It never hurts to do what is best for you as a family. It's important to have a happy home. The child is very young but your early intervention since you are concerned is helpful no matter what. Anytime (at any school) I did not want to drop our child in the care of a school, we did some version of home-schooling that worked for us until we felt that our child would be a good fit for the school. For us, the goal is not the school, it is the life after school. Remember many famous, successful, talented people have dropped out of the most prestigious schools to pursue their dreams, passions, talents, and gifts. The schools are supposed to help the people.

My understanding of IDEA is that your son's right to FAPE under IDEA started when he turned 3.


Emphasis mine, quote taken from http://www.dkattorneys.com/publications.cfm?id=191

In other words, not having an appropriate placement for your DS is their problem to fix, not yours.

Montessori is very strict on things being done the right way every time. It does not suit all kids. If he was only asked to count 30 objects then he will only be recorded as able to count 30 objects.

I would just keep him home and go to activities where you will be present to support and guide him.

Mana is correct. As a child with a disability served under an IEP, they have a FAPE obligation. It is for the whole team, including parents, to determine what's appropriate (not the IU unilaterally). But once that determination is made, the child has a right to that appropriate education.

Have you gone back to the IU with your concerns?

DeeDee

I do not know where you are located but have you looked into joining CARD, center for autism and related disorders? My CARD rep. has been a life saver over the last three years.
Also verbal behavior when done correctly can help any child no matter where they fall on the spectrum.

That's a fairly standard problem for a child with ASD. They don't necessarily play with toys OR peers, and they may just wander around a classroom in frustration.

We taught DS11 play skills as part of his ABA therapy. It helped quite a bit.


Seems very likely to me. It's great that you have the dx in hand now because it means you can target skill-building-- but much has to be actively taught and supported for preschool to be successful for a child with ASD. You can't assume they are going to pick up social skills or school-behavior skills from their environment.


See Mana's and my previous posts. They owe him a Free, Appropriate Public Education. From the age of 3. Do not let them tell you otherwise!


Either they are ill-informed, or they are hoping you'll go away. You may have to be tenacious to get this done.


If there are issues of aggression, poor play skills, etc. then he's not too high functioning to need it. "Functioning" is essentially a label for IQ, but it has nothing to do with how disabled a person is by their autism. My DS11 has a very high IQ, and is highly verbal, but he is also quite disabled by his autism and has really benefited from direct teaching of skills through ABA.

The nice thing about ABA is that it's individualized. Our team quickly learned that DS did not need some of their standard stuff-- and he DID need some stuff they weren't used to teaching-- but their strategies could be adapted to teach DS precisely the things he needed. We still use them to shape behavior now, at age 11.

Those early years are a really good time to build skills, because you'll never have this much control over his time again (unless you homeschool, which isn't the only way to get the job done). I'd go back to the IU, call an IEP meeting, and press for an appropriate placement as well as services.

What state you are in matters, too. In some states there are state-run scholarship programs that fund private school placements for kids with autism where there isn't something appropriate in the local district. A local parent support or advocacy group can probably advise you about what's working well for other families.

Hi, thanks again everyone. We are in bucks county, PA. Our IU is 45 minutes away. How do I get ABA? Who is supposed to offer it? Everyone seems to tell us to go everywhere else for everything. What I'd like the most is for someone to come into our home and teach him to play with his toys here and then add one of his playmates and teach them to play together. I try to teach him whenever possible, but he's not very cooperative and I'm honestly very busy trying to clean up after him and take care of everything and I'm often too tired to put a lot of energy into one sided pretend play on the floor. Right now because I'm not directing him and typing on my phone he's grabbing everything nearby and stacking it on me. While I clean that up he will probably run up and down the hall counting or go make another pile in another room. The only thing he wants to do with me is his preferred stuff. I have to take away his workbooks to get him to try anything new, like playing doctor, which he will do while crying trying to earn back his workbooks. I want play to be fun!

You could start here. See if they can help you.The Bucks County Autism Support Coalition.