Anonymous wrote:To OP - I read your opening comments but don't have time to read everything inbetween. I just want to share some info with you that might be helpful. First of all, thanks for mentioning the encopresis - I learn something new on dcurbanmoms every day - my DC has it although the pediatric gastro. did not put a name to it. Thank you.
Here's my message. Our pediatrician completely missed the fact that our DC had Aspergers/anxiety/ADHD. From birth DC had GERD, an unusually red behind, gas, pain in the gut. I kept complaining. Pediatrician blew me off. Testing (full NT) 4 times showed high I.Q. and possible executive functioning problems. Then exec. functioning problems two standard deviations off norm. Then ADHD. It was only on the fifth round of testing (when I insisted on blind testing) that we got the Aspergers diagnosis - which is absolutely correct.
Next I start reading on Aspergers and find the link to the gastro issues. I ask ped. for referrals and get hooked up with someone who does everything BUT a simple x-ray. I research it on my own and called Children's Hospital in Boston and ask the no. 1 research on the link between aspergers and gas/leakage/abdominal issues for a local pediatric gastro. DH and I take DC in to see him. He examines DC and says "well, I'm sending DC downstairs for an x-ray but I predict that DC is full of fecalomas (hardened, old balls of stool); I can feel that her rectum is already extended". Downstairs we go. Get the x-rays. Even I, a non-doctor, can see the fecalomas in the x-ray. We do a full clean-out. DC is much better. Ped. gastro. says good but this is not the end - DC's colon is distended and will never properly return to normal size because this problem went unchecked for more than a decade. He was right . DC is full of fecalomas again so another clean-out is due plus daily miralax treatments.
So what I'm trying to say is that we've been there. Our DC has soiled himself. WE found out the answer was Aspergers and untreated fecalomas. DC has been on zoloft and sertralene for five years. DC also complains about every little ache and pain. DC is extremely bright. We had an IEP which helped tremendously but it's still a struggle.
Does your child sit on the toilet for a long time? Ours did and we didn't understand why. We also didn't understand why DC couldn't tell us whether or not it was diarrhea or constipation because it was both.
Let me know if you want me to post the name of the ped. gastroenterologist.
Good luck. I am praying for you.
Anonymous wrote:Anonymous wrote:IMO, you don't need a therapist as much as you need a school plan. It is clear that whatever school plan has been developed is not sufficient. IME, the anxiety and the negative self-talk cannot be resolved by psychotherapy or meds alone as they are a clear symptom of an underlying problem -- the failed educational plan. (This is not to say that you don't ALSO need a psychotherapist.)
It is unclear to me from your post -- do you have an official 504 plan or are the "binder checks" etc. being done ad hoc without a plan in place?
If there is no 504 plan, you need to get that in place at a minimum, and perhaps an IEP instead depending on what is going on.
Re: applying to the GT/LD program -- who said "that ship has sailed"? My understanding is that only the GT Middle School Magnets are by application, and it is true that if your son is in 6th grade he has already missed the application process for that. BUT, as I understand it, in the GT/LD programs in middle school admissions are done as a product of the 504/IEP process --i.e. the school-based team (in which the parent is an equal participant) makes a recommendation for placement in these programs.
Please contact Marisa Stemple, who is the MCPS GT/LD county-wide instructional specialist. It is her job to speak with you and let you know about the GT/LD programs, and even to review your case, observe your child, and participate in your 504/IEP meeting if you ask. You might also want to hook up with the GT/LD network and get on their listserv and ask more questions there. You can find Stemple's email and phone contact info on the MCPS website and the GT/LD network has a website.
If you have had no full neuropsych evaluation, you need one. Who diagnosed the ADD -- the psychiatrist? Generally speaking, a pDoc is qualified to supervise the meds, but I am very uncomfortable that yours prescribed meds without a "full work up". Did he/she do even the most basic checklist evaluation completed by parents and teachers? Only the neuropsychologist or a psychologist is qualified to do the full educational evaluation that can provide the necessary data and ID potential other diagnoses on which a proper school plan can be devised. The neuropsychologist can do other testing objective testing on executive functioning and attention which can help with an ADD diagnosis.
Many ADD kids need IEPs, which provide instructional support that an ADD child needs in the areas of executive planning and organization. "Binder checks" are often not enough. Assistance writing homework assignments down in the planner, breaking up and monitoring the accomplishment of long term projects, understanding what is really desired by the teacher in the homework, checks on turning in homework (i.e. explicitly asking child for it), extra time on exams and limited homework may be necessary as well as the ability to move or have substitute physical motion, and redirection to task in the classroom. Some of this is available on a 504 but some of it needs an IEP.
If you write a letter to your school and ask them to do the educational testing, they will be obliged to do so free of charge (given the facts as you describe them). Say that your child has ADD, you think that the current educational supports put in place are not adequate due to his increasing anxiety and plummeting grades and you believe that he might need "specialized instruction" to help him cope with his ADD in the classroom, and that you are requesting a full educational testing workup by the school psychologist to see if there are any additional issues and that you want to schedule a meeting with an IEP team. (if he doesn't qualify for an IEP, the team will have to consider the alternative of a 504 plan.) There are pros and cons to public school testing vs. going private, of course.
BTW, you sound very suspicious about neuropsychs. Almost all neuropsychs offer some services. Would you go see a doctor who both identifies your diagnosis and prescribes treatment - of course. Yes, as everywhere in life, there are some people who take advantage of a parent's desperation to prescribe expensive and unnecessary therapies, but you can be on the watch for this and read up about which therapies have the best evidential support. A neuropsych typically does extensive testing (2 days usually) and uses testing instruments which have been normed, standardized and validated. You will see objective results for most test instruments that report your child's score against a bell curve.
We have used Stixrud. Lab School is also good. The Stixrud testing and report were good, and there was no effort to sell services to us. I think what the poster in the thread meant by testers who offer services is that if you go to Huntington Tutoring to get "tested," you will only get something that reinforces their services. Neuropsychs have a professional obligations that these types of tutoring services do not. That said, asking for a sample report and references (or asking around to see who has used someone they like) is always a good idea.
Dear PP: This is OP, thank you for taking the time to write this very thoughtful message. I have replied to your questions below.
1. We do not have a 504 or IEP in place. My son was able to "keep it together" up until this point.
2. Re MoCo GT/LD - I called the number listed as the contact number and whomever answered or was listed as the contact person told me this (It was not Ms. Stemple, but I don't think it was a receptionist either, I think it was a professonal in the program).
3. Yes, the psychiatrist diagnosed this without a full work-up and this was mainly due to my extreme concern about finances, I believe. Also the psychiatrist (appears to be) very competent - has taught at Georgetown, etc. - and has been in practice a long time and knows me and my family issues well.
4. I did not know that all of the services that you listed are available as supports, thank you, I can see where these would be helpful.
5. Re the neuropsych testing - wouldn't it be too much for my son to do both neuropsych and school testing? He is worried that something is "wrong" with him, he's afraid I'm going to send him "to a special school" (though I've not talked about it). From the threads, I've definitely gotten the perception that private neuropsych work-ups give you more and better detailed information that is helpful in parenting and treating the child. His increasingly dark, suicidal rants are prompting me to do whatever I can at this point to get to the root of the issues. That said, when I approached the school counselor in the fall, she said she'd work to start him on a path to get the testing for an IEP...but after the minimal supports put in place (binder checks, etc) his grades picked up to straight As again. To complicate matters, he had a lot of absences in the fall (which I'm belatedly realizing were probably psychosomatic or psychogenic) and the teachers at the group meeting blamed his absences on his poor grades. When I brought up the ADD, at least one teacher murmured "They all have ADD." [meaning all the kids -- or parents -- complain of ADD]. I really did not want to "label" my kid and hoped he could make it through as I did, but now I see he needs some more supports. Long winded way of asking, should I put off the private neuropsych testing and get school-based testing with the school counselor's help because then at least the school issues may resolve? If I do school-based and it's not sufficient, can I do private too? My son is going to HATE all of this, so I really don't want to put him through anymore of this than absolutely necessary. He also HATES when the school counselor comes to talk to him, HATEs when the teachers ask him about organization and complains to me that he just wants to be "left alone." And he screams at me saying I'm too "overprotective."
6. Re "suspicious" re neuropsych -- my question about separating services from testing was based purely on what I've read on these boards, including the string I copied. I think right now I'd describe myself as "clueless" or "still learning." I don't know enough to be suspicious, I'm just doing my research! That said, you're right, if the earlier poster was describing something like Huntington, that would make sense.
Since I wrote this, I've also called and left a message for Kerzner and the school counselor.
Thanks again!
Anonymous wrote:OP, please post an update when you can and let us know how the zoloft is working out.
I do think a 504 would be in order and additional supports. Having a teacher say things like 'He's bright but needs to take responsibility" is not really helpful. I totally agree with the PP who said an educational plan is paramount. So much self esteem gets wrapped up in school and feeling like you can't perform or make friends is horrible for kids this age--it is why kids this age do commit suicide. WHile your son may be a bit of a drama queen, you must take the suicidal ideation as a very real expression of serious distress (which it sounds like you do, of course--sounds like you are doing everything you can).
I would also have a conversation with your son about learning differences and brain differences: acknowledge that every one's brain works differently. It is harder for him to focus and easier for him to feel anxious and sad. This is genetic, hereditary and not his fault. It is also treatable, to a certain extent, but he needs to be a willing partner on it. if you think he's be up to it, have him report on thoughts/feelings/stuck places. If not, work with him (and a family therapist?) to create a schedule, work on motivations (like minecraft). If you could get a homework tutor even a few days a week, it might help him stay on track, is that a possibility? Iwould also see if said tutor can get him to take the ritalin if necessary (why does your son refuse it? does he not like the idea of it, or the feeling it produces?).
about 'outdoor' time--what about a class that involves physical activity? we tried many things before finding martial arts to be effective and pleasurable.
encopresis: is he taking fiber supplements? We found mixing them in a smoothie to help. Hard when your kid eats only crackers, but we came up with a 'must include' diet and then let him have a lot of 'not so good for you' things as well, as long as the healthy, fiber and protein based things were consumed.(yes, sugar but after broccoli).
finally, where is your spouse on this? Do you have support? you two need to be unified in your plan.
hugs to you. its a hard, anxious road. I wish you the best and some serious improvement for your son.
Anonymous wrote:Anonymous wrote:Anonymous wrote:Anonymous wrote:Anonymous wrote:Outside time after school should be required, not optional. Also, no computer games. He's not really to decide these things for himself. Look for professionals who will support your consistancy here.
For a suicidal kid with ADD, video games should not be cut off. They give him a moment of fun and success. Please don't listen to this person to cut him off from what he enjoys.
OP again - thanks and no worries, I assumed that PP had never seen a Minecraft build.![]()
My DS is a Minecraft genius. At first we tried limiting his computer time but it started to become apparent to us that THIS was the one thing he felt he was good at. He is getting a lot of attention from his peers - especially those who would otherwise not notice him. They all want HIM to teach them his tricks and how to play the game. It has opened up a new door for him with respect to peer relationships. That in turn has boosted his self esteem beyond anything a therapist could do. So long as he gets his homework done, he is allowed to play minecraft.
OP if video games make him happy and they are non-violent - let it go! It will not lower his IQ or make him a socio-path or anti-social.
+1000 on Minecraft. I feel sorry for kids who don't know about Minecraft. It is a great video game and incredibly popular with kids. DS has classmates begging to come over our house for play dates because of this game. He gets rewarded with Minecraft mods for good behavior at school.
Anonymous wrote:Anonymous wrote:Anonymous wrote:Anonymous wrote:Outside time after school should be required, not optional. Also, no computer games. He's not really to decide these things for himself. Look for professionals who will support your consistancy here.
For a suicidal kid with ADD, video games should not be cut off. They give him a moment of fun and success. Please don't listen to this person to cut him off from what he enjoys.
OP again - thanks and no worries, I assumed that PP had never seen a Minecraft build.![]()
My DS is a Minecraft genius. At first we tried limiting his computer time but it started to become apparent to us that THIS was the one thing he felt he was good at. He is getting a lot of attention from his peers - especially those who would otherwise not notice him. They all want HIM to teach them his tricks and how to play the game. It has opened up a new door for him with respect to peer relationships. That in turn has boosted his self esteem beyond anything a therapist could do. So long as he gets his homework done, he is allowed to play minecraft.
OP if video games make him happy and they are non-violent - let it go! It will not lower his IQ or make him a socio-path or anti-social.
Anonymous wrote:Anonymous wrote:Anonymous wrote:Outside time after school should be required, not optional. Also, no computer games. He's not really to decide these things for himself. Look for professionals who will support your consistancy here.
For a suicidal kid with ADD, video games should not be cut off. They give him a moment of fun and success. Please don't listen to this person to cut him off from what he enjoys.
OP again - thanks and no worries, I assumed that PP had never seen a Minecraft build.![]()
Anonymous wrote:OP again - thank you.
Someone I respect with experience in SN told me today to be careful what is disclosed to the school from the testing, or other discussions. The school counselor told me she was not going to put the suicidal notes in his record, but can anyone expand on what dangers there are to revealing information that is best left unreported, or even explain what that means? I'm of course going to get back with this person, but I'm just climbing the walls right now...
Anonymous wrote:Anonymous wrote:Anonymous wrote:Outside time after school should be required, not optional. Also, no computer games. He's not really to decide these things for himself. Look for professionals who will support your consistancy here.
For a suicidal kid with ADD, video games should not be cut off. They give him a moment of fun and success. Please don't listen to this person to cut him off from what he enjoys.
OP again - thanks and no worries, I assumed that PP had never seen a Minecraft build.![]()