Special Needs

meeting with psychologist Tuesday

So I've been on an off this board for years.  My twin boys were born 10 weeks early in 2009.  They had EI early on for gross motor delays.  At 18 months they were "caught up" and no longer qualified for EI.  Then at 3, and 3.5 they were diagnosed with Epilepsy… non-convulsie, Panagopoulos syndrome.  Also doesn't seem to be affecting their development though they are on medication which has behavior side effects.  That being said I "think" they were tough babies, tough toddlers, strong emotions, stubborn, etc. before they even started on the Keppra so I'm not blaming their current behavior on the medication though it could be related.  

They were in full day preschool as typical students this past year.. their academics are great.  They were there from my point of view to learn to behave in a classroom, follow classroom rules, walk in a line, learn to use the bathrooms, etc.  They did well (they were in the same classroom) through conferences in November though "learning to follow classroom rules" and "attending to tasks" were the things they were still working on in December I started getting more reports of bad behavior.   Talking back to the teachers, flat out ignoring them, etc.  Some issues on the playground following rules and listening.  They used time outs as punishment which I was fine with.  We are very strict at home too well so I think anyway.   By the end of the year it was strongly recommended we separate for K which we are and that I look in to some counseling for them because their behavior (one more than the other but both) was not that of a typical boy.  They basically don't listen to adults…  they do to me though they are impulsive still and attention is a huge issue… they ignore other adults such as my mother or MIL (whom each watch them for a few hours a week while I work) thinking they know right or they just don't care and want to do what they want to do.  

So the wait list for child mental health where I work is 250 kids deep (I work in Early Intervention).  My boss pulled some strings and we are meeting with a psychologist Tuesday.  I talked about ADHD and ADD and she mentioned they usually won't diagnose until they are at least in K.  Their preK teacher thinks they will really struggle in a class of 18-20 kids.  That either the structure will be great for them or terrible (in that they'll be mad they have to work all day and just act out).  This past year it was 13 kids (6 with autism, 7 without) and 4 teachers (1 lead, 1 assistant, 2 ABA therapists).  So we'll see how Tuesday goes.  If you have any ideas or suggestions let me know.   They have not had developmental testing other than through EI when little and they do see their neurologist every 6-8 months depending what's going on seizure wise.  I did talk at one point to their PreK teacher about talking to her BCBA about behavior modification in the classroom… like what would she suggest and the teacher's response was "she stinks, she'd tell me to give them a sticker."   So….. I'm not sure how much benefit a school eval would be.  She's also the Kindergarten BCBA.  The other area would maybe be OT because of the attention, sensory seeking behaviors (they never stop moving, talking, etc.) but I'm well versed in the services this district provides due to being in EI and I know they won't qualify.  Maybe if they piss the teacher off enough they will, but we'll have to see I guess.   

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Re: meeting with psychologist Tuesday

  • I'm not sure if I have any advice for you that you don't already know, but I really hope your appt goes well, and that you're able to get a clear idea of what's going on and connected with whatever supports or services would be helpful. I would just make sure going in that you have documentation from their PreK teachers if possible (does the psyc give scales for teachers to fill out? The devel pedi had us bring in info from the teachers at our first visit to help round out the picture.)

    That's rough that the waiting lists are so long. :( Are EI and school-aged kids on the same waiting list? Hopefully now that your boys will be established patients with the psyc, if behavioral concerns do arise again in K you could get back in quickly for an ADHD Dx or whatever else might be appropriate. Let us know how things go!
    fraternal twin boys born january 2009
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  • No EI And school-aged aren't on the same lists (though our EI is swamped too, but there are guidelines/timelines we have to follow so referrals do get seen in a timely fashion)… my boss just happens to run our EI and the she's the "services for young children" coordinator so it goes up til age 8 I think so she still was able to help me out.

    She did not give me any paperwork to fill out ahead of time, but asked that I sign releases for her to talk to kindergarten and their pediatrician (who wanted to wait to refer for ADHD til they were in K at least).  

    I could do developmental pedi too if I think it will help, but those wait lists are like 8 months - 1 year so I just have to decide.  I do think that the psychologist could get us in to a psychiatrist more quickly and my boss did look over the ones my insurance covers and gave me the names of 3 that she specifically likes for young children, the psychologist just said kind of like for Char that they won't do much before they are in full day K.  

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  • No advice, just support. I will say that we got an ADHD diagnosis prior to starting kindy.  The developmental pedi thought that DD would have a hard time being in a class of 20 kids and paying attention, but with a few accommodations, she did fine.  The structure did really help her.  Her teacher was the stricter, more organized of the two kindy teachers, and I think that helped a lot.

    Good luck with everything!
  • -auntie- said:
    So I've been on an off this board for years.  My twin boys were born 10 weeks early in 2009.  They had EI early on for gross motor delays.  At 18 months they were "caught up" and no longer qualified for EI.  Then at 3, and 3.5 they were diagnosed with Epilepsy… non-convulsie, Panagopoulos syndrome.  Also doesn't seem to be affecting their development though they are on medication which has behavior side effects.  That being said I "think" they were tough babies, tough toddlers, strong emotions, stubborn, etc. before they even started on the Keppra so I'm not blaming their current behavior on the medication though it could be related.  

    You have so much going on, it's going to be hard to sort out how the different factors relate to make them more challenging behaviorally. 

    In talking with other parents who've been through this kind of journey, their advice would be to try as much as possible to treat them as individuals which may mean different teachers, therapists, behavior mods, etc.

    I can totally do that and will talk to their individual teachers.  One buys in to rules much more than the other… almost to the point of being anxious about it.  The therapist we are meeting with will do more family stuff to start and we'll figure out where we need to go from there.  

    They were in full day preschool as typical students this past year.. their academics are great.  They were there from my point of view to learn to behave in a classroom, follow classroom rules, walk in a line, learn to use the bathrooms, etc. 

    Sounds like a great plan. 

    I'm sort of curious how they came to be considered "typical peers" given that they have epilepsy and take medication know to cause atypical behavior. As the parent of a child on spectrum, if I was trading off an intensive ABA classroom for access to NT peers, I'd want them to all be NT.

    They passed a screening it was looking for "typically developing."  I paid the tuition each month.  That easy.  It really was about them being typical in terms of academics, social skills, etc.  I don't think the screening really even looks at attention seeing it's a 45 min. screening quickly looking at all developmental areas.  It's funny that you say that about the parts of children with ASD.  My kids come off very sweet and very friendlyeasily including all the children with ASD in their play.  You wouldn't believe the number of parents that ask me if they will be going to _____ school (whatever school their kids is) because they really do make "nice" friends for their children.  And are disappointed to find out they won't be going to the same school. 

     They did well (they were in the same classroom) through conferences in November

    Do you think they had a "honeymoon phase" where they were learning the ropes and not acting out? This is common in a lot of kids and may be something you look for going forward. It can be hard because a parent starts each new school year with hopes that things will be better and then the emails start just before Halloween. One downside to this is that sometimes teachers ignore behavior plans when the child they see on the first day doesn't seem to line up with the one she's been prepared for via the IEP or 504.

    They absolutely have a honeymoon period.  They are at a new home daycare this summer 2 days a week because I didn't think they'd be successful in the town "camp."  They'd be fine, but coming back to follow classroom rules again in Sept. would be a challenge I think.  So when I look for daycare I always tell them the truth about their behavior.  This one specifically checked in with their last one (who would have taken them, but didn't have space) and was told "they are just busy boys."   My thought is always well summer is only 7 weeks, anyone can deal with them for 7 weeks right I mean the first 5 will be honeymoon anyway.  And yes they've been fine at the daycare busy they go non-stop, talk non-stop, but she thinks their behavior is within range of normal.

     though "learning to follow classroom rules" and "attending to tasks" were the things they were still working on in December I started getting more reports of bad behavior.   Talking back to the teachers, flat out ignoring them, etc.  Some issues on the playground following rules and listening.  They used time outs as punishment which I was fine with.  We are very strict at home too well so I think anyway.   By the end of the year it was strongly recommended we separate for K which we are and that I look in to some counseling for them because their behavior (one more than the other but both) was not that of a typical boy.  They basically don't listen to adults…  they do to me though they are impulsive still and attention is a huge issue… they ignore other adults such as my mother or MIL (whom each watch them for a few hours a week while I work) thinking they know right or they just don't care and want to do what they want to do.  

    This is interesting. Most kids who have challenging behaviors have them across the board- they can't/won't toe the line for anyone. But there are a few who will behave better for one or two people and not for anyone else. I see this really often with kids on spectrum. I always got way better behavior out of DS than most of his teachers did. I've known a few boys who had a bit of a misogynist streak who behave better in the care of male teachers and professionals. The world of the preschool and primary grade student is pretty estrogen-soaked. You might want to explore a male option if there's a good one.

    No male K teachers in the entire city.  They are better for me because I follow through.  Though they should respect my MIL because she's an adult, etc. there has been no follow through with threats since they were infants/toddlers and they totally know that and basically just do whatever they want because she can't/won't do anything about it.  With my mom the trouble they get in to is more impulsive.  Joey almost got "hit by a truck" in her words cause she let him go to the car ahead of her leaving a lake swimming and wouldn't stop when she yelled to him.  I would never have let him that far ahead of me and he would have had to hold my hand every time there after til he earned back my trust to walk next to me.  They are pretty good for the daycare providers who always have very specific expectations and rewards/punishments.  It's more once they get away with it once you're screwed.  

    So the wait list for child mental health where I work is 250 kids deep (I work in Early Intervention).  My boss pulled some strings and we are meeting with a psychologist Tuesday.  I talked about ADHD and ADD and she mentioned they usually won't diagnose until they are at least in K. 

    There are professionals who will dx ADHD earlier in some kids- especially if the behaviors are extreme or put them at risk of harm. That said, age brings clarity. 

    A lot of what you describe doesn't sound especially ADHD or perhaps it's ADHD+ something else. 

    Do you see inattention, hyperactivity, hyper focus as well as poor behavioral self regulation?

    Yes.  Well Joey is inattentive, impulsive, hyperactive, gets frustrated really easy, never stops moving.

    Nathan is not as non-stop moving though he never stops talking, but he is more of the day dreamer.  He actually didn't want to bring mittens and boots to school this year cause "it takes me too long to do all that stuff at my locker cause I can't focus and they leave me."  The class would go in to the classroom and then he could focus and finish.  He's not as impulsive, but also shows some anxiousness that Joey doesn't.  He's typically better behaved if he buys in to the rules just internally distracted.

    They both can attend.  If it's a novel activity they love it, they learn a ton just through experience, they can sit and read for long periods of time, when they do watch t.v. (not very often) they are "all in" and fairly calm though wiggly almost all the time.  Once they are engaged in a  pretend play activity they can stick with that scheme together or with other kids for extended periods of time… as long as they are actively moving.  They also can sit and play board games, going through a few games - Bingo, Candy Land, Hi Ho Cheerio for up to 45 min. before needing a true get up and move break.  
     Their preK teacher thinks they will really struggle in a class of 18-20 kids.  That either the structure will be great for them or terrible (in that they'll be mad they have to work all day and just act out). 

    I could see a combination of ways this could play out. DS has ADHD (impulsive/inattentive) as one of his dxs. His adjustment to kindie was OK- it' was full day but the afternoons were primarily recess. free play and being read to. First grade was harder. He had trouble with keeping his shit together for a full academic day. And he had a very disorganized teacher who was a bad fit. In general though, DS (and many ADHDers) do best with overt structure assuming they get some movement breaks in the day.
      

    This past year it was 13 kids (6 with autism, 7 without) and 4 teachers (1 lead, 1 assistant, 2 ABA therapists).  So we'll see how Tuesday goes.  If you have any ideas or suggestions let me know.   

    I would make a list of concerns ahead of time- one for each boy. If you can give examples of what you're seeing -what, when, in whose care, it could be useful.

    Thanks!
    They have not had developmental testing other than through EI when little and they do see their neurologist every 6-8 months depending what's going on seizure wise.  I did talk at one point to their PreK teacher about talking to her BCBA about behavior modification in the classroom… like what would she suggest and the teacher's response was "she stinks, she'd tell me to give them a sticker."   

    Ugh. That's a shame. So many teachers have the knee-jerk let's make a sticker chart. These were never an effective strategy at my house, so the suggestion always merited an eye-roll from me.
    Yep not going to work for them… at all.  The psychologist when I talked to her seemed much more invested in figuring out along with the school what will work.  

    So….. I'm not sure how much benefit a school eval would be.  She's also the Kindergarten BCBA.  The other area would maybe be OT because of the attention, sensory seeking behaviors (they never stop moving, talking, etc.) but I'm well versed in the services this district provides due to being in EI and I know they won't qualify.  Maybe if they piss the teacher off enough they will, but we'll have to see I guess.  

    I would wait a while and ask for the district evaluation. Like as soon as you start getting communication from teachers about behaviors. I would request a complete MFE be done by a team including OT (for sensory issues) and the school psych to include observations in class and during unstructured times like lunch. In this situation, I'd want IQ and acheivement testing to tease out whether there might be some learning differences which can look like ADHD in little kids.

    Thanks so much!  They actually do great at lunch cause they LOVE to eat and finish everything in their lunch boxes which basically takes the whole lunch period.  They are able to organize themselves during that time and really haven't "lost" anything related to lunch (boxes, containers, etc.)  Playground is probably not their best Joey likes to do things like climb up the slide even when told not to repeatedly so then he is removed and has to sit and watch but it doesn't always stop him the next day.  Riding the bus is concerning to me.  They are totally the kids if they are "dared" to do something will do it.  I had to pull them off a kid in a McDonald's play place last year because he said "nah nah nah nah you can't get me."  Umm yes they canTand they don't take the 2 seconds to consider why that's not a good idea.  They did participate in standardized academic testing at the preK level last year and their math and reading skills were at the top of the chart, but again that was computer based and they love to do stuff on the computer.  
    Good luck. I hope they have a great year.
    Thanks I can't wait to meet the psychologist and see what she has to offer and meet their teachers.  They are excited too which is good.  


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