Another newbie...

[helppls]

Hi all,
I'm new here and grateful for your support, insight, and help. Our middle son has struggled, intermittently, throughout life. He actually performs well, or has until this year. With the start of Middle School, he's making a spectacular nosedive that's heartwrenching to watch.

He's at a pretty elite private school, he also plays a musical instrument & until recently devoted 200 min/week to that, plus lesson time, etc. About 2-3 weeks into the school year he began to complain about homework. Not surprising for him. That escalated into not doing homework, which segued into our hiring a tutor for 8 hours/week to help him get back on track. A week into this, he realizes he can't really catch up from the hole he's dug from the 10 days or so of no homework. This leads to 2 days of school refusal. The school psychiatric directed us to use the psychiatric er on the 2nd day to have him seen emergently and get a better picture of what was going on. They suggested acute anxiety, possible depression, discharge to home, with outpatient group or indiv. therapy. School responded by waiving all past due homework, asking son for what other accommodations would help him feel more at ease (he refused any), and school telling him that if homework during this time was too intense, he could tell teachers, who would give him a pass.

Things should be getting better, right? Nope. He's done no homework since that day, which was a week ago. We've cancelled the tutor. What's the use in paying her to watch him not work? Today was the strings concert. He "was sick" Convinced he would do horribly, would be a laughingstock. Nothing could be less true.

Tonight he says he wants to shave his head. That he wants to look like he feels.

Clearly, he's crying harder and louder for help.

We're ready to have him leave his current school, but would prefer that the ending can be a conclusion which he comes to on his own (right now he wants to be there, he says). But, where to go next? He was at another, elite school K-3, that school closed due to $ issues. He was then at a more traditional school, that year was miserable because he was bored, said he learned nothing, and really hated that homework. This is his 2nd yr at the current school. Part of me feels that it would just be good for him to come home and do a few hours of school a day here, online, perhaps. The other part of me thinks I'm nuts to even consider this---how will I ever motivate him entirely on my own? He can be really, really ugly at home when he's upset. In public, he's the sweetest thing ever. Well liked by all. Why would I set myself up for failure? And how about him? Would he even learn anything? Not if every day looked like today.

Of course, you can all guess that in the midst of all of this are medication changes related to his ADHD. Adderall is his wonder drug, except when it's not. Stimulants, and many medications, don't play very nicely with his system. We've hooked up with a child psychologist (he'll do weekly indiv), have an initial consultation set with a child psychiatrist.

Any ideas about how to parent through this, and what educational settings can best help this type of child are very appreciated.

With thanks,

hlppls

 

[Ma Kettle]

Hi helppls-

Since I am a newbie, too, I have no advice. Just wanted to welcome a fellow newbie and hurting parent. I am sure we will find good advice and if nothing else acceptance here.

Sending lots of hugs your way.

Ma

Ma Kettle, 40ish married 21 years to
Pa Kettle, 40ish, Type I diabetes
easy child daughter 'Mary' 18, ADD out of state college student and my sunshine
difficult child daughter 'Halfpint' 15 (as of just a week ago) breaking our hearts

 

[helppls]

Thanks, Ma, and blessings to you and your half pint. Hugs to you, too.

Hlppls

 

[Hound dog]

Does your son have an IEP in place at school? If not, you might want to talk with them about getting the process started. Sounds to me like you're on the right track with a therapist and a psychiatric doctor.

Since your son has struggled throughout his childhood, I'm thinking there is something else going on that has been missed along the way. It's not uncommon for a change in work load and environment to make such issues suddenly overwhelming.

Would he sit with you and tell you in a rational discussion about what he feels his issues in school academically and with homework are? (you'd have to be careful not to get upset at his answers as I don't know it's just dumb or some such is a typical answer at that age)

How was his early development? Did he hit his developmental milestones within normal ranges? Have you noticed with either homework or school work certain areas that tend to trigger the anxiety or where he performs more poorly than others. I'm wondering if a neuropsychological evaluation would be a good idea as it's a broad based evaluation that looks for a wide variety of things.

My daughter's school issues started around around Jr High but escalated when she started high school. It took a while but the reason for the academic part of it was her dyslexia. In the lower grades she had ways of coping to some degree......but in high school those methods were no longer working and she found herself overwhelmed until she learned to cope with it.

Of course the medication changes could be exacerbating any under lying issues.

Welcome to the board. I'm glad you found us.

Hugs

 

[Malika]

Hello and welcome. I have to tell you that I hate homework! I think it's a terrible thing for younger kids and if it causes issues for a child in the way that it does for your son, there should be a possibility to drop it. I have read - but am not sure whether it was in connection with the States - that a child with diagnosed ADHD could be excused homework under the terms of the IEP or equivalent. Might be worth looking into?
If your son is more or less happy where he is, and the school is amenable, which it reallys sounds like it is, I would personally think more about keeping him there. He has already had a lot of changes. Better the devil you know... I agree that home schooling sounds like too much to take on.
I see these kind of issues with my son all the time - not with homework but where he doesn't want to do something. I can usually find a way to get him to do it by keeping things very light and unstressy, and also by making things into fun and a game. Of course, my son is only 4 but I think the principle might stand good. Stress and pressure do not go down well and make a bad situation worse. If actually sounds as if your son is not too far away from finding a solution with all this - he is just getting upset at the moment, but that's just emotion, and emotions change... particularly with toddlers and teenagers! See what dropping the whole homework crisis achieves...

 

[BusynMember]

Hi. Before we can really help you, it would be useful if we had more information about your son. I hope you don't mind...I have a few questions for you that will help us help you. I've been at this quite a while (fun, fun).

1/Has he ever been evaluated by a neuropsychologist? Who diagnosed him?

2/How was his early development including cuddling, speech, eye contact, motor skills, quirks, obsessions? Can he relate well to his same age peers? Can he transition from one activity to another?

3/Are there any psychiatric problems on either side of his genetic family tree? Any substance abuse?

4/Does your private school do IEPs? This is important because my son, who is on the autism spectrum, did not do well in a private school because in Wisconsin private schools do not have to do IEPs. He did much better in our local public school and likes it too. Sometimes private schools can be "snobby" or the expectations from staff AND kids can be very high and if a kid feels he can't keep us, the child can be looked down upon or bullied (although most private schools don't allow bullying...the kids know if they aren't liked). It is unlikely any school will drop all homework based on an ADHD diagnosis. In fact, ADHD doesn't even necessarily warrant accommodations here which is why it's good to get a complete neuropsychologist evaluation. My son does not bring homework home, but he certainly has to do it in an extra study hall, in which the teacher helps anyone who needs it. That way he doesn't bring any home.

It is hard to give advice on how to parent another child, especially without knowing the history. Our kids pretty much do not respond to the normal types of parenting methods that work on other kids. Does your son see a therapist? I see that your husband is a doctor. Does he have any ideas? I realize it is very hard to diagnose/treat your own child though.

Others will come along.

 

[Malika]

Well, yes, MWM gives very good advice. This sounds rather ridiculous but I think it is actually better than mine so I would point you away from mine towards hers

 

[keista]

Hi and welcome.

It doesn't sound like changing schools will be the answer right now. Honest and truly? He sounds depressed. As Hound mentioned, it's possible that he does have undiagnosed issues, but even if there aren't, the change from elementary to middle schools, coinciding with puberty = crazy turmoil.

My son hit the wall of depression at the same time as yours. It was not pretty, but fortunately not as bad as it could have been. Yeah, pretty much all homework and classwork (never were issues before) ceased to get done. Only after I got him medicated, did he pull out of the funk.

Yes, he may have issues other than ADHD that may be affecting him, so it's prudent to get him fully evaluated. A visit with a psychiatrist (psychiatrist) is also a good idea. psychiatric er won't necessarily prescribe or recommend medication, especially for this type of "mild" case. They didn't for my son. Doesn't mean that medication is not necessary, just means he was stable enough for discharge. IOW not in any IMMEDIATE danger from himself.

Good luck and welcome again!

 

[buddy]

Welcome! Sorry your son is struggling so right now. Sounds like you have a school that is compassionate and willing to try things to support him so I agree, changing schools before you know what is really going on might not be the best great idea. (of course only you know all the details so just MO) I also strongly agree that seeking outprivate neuropsychologist and medical evaluations are called for asap to try to identify any and all learning needs as well as mood/mental health needs. Even if he is in private school he is still eligible for assessment through the public school district, and special educations services if he qualifies. The private school is not obligated to do the service. I have serviced children from private schools who are bussed to the building I worked at and then they went home from there (lots of options for service, but usually has to be off private school property). He may only need to have the private school use district staff for consult and the private school, if they are willing can make accomodations that way.

I know you will find many here who can relate and hope you feel the support and caring that is shared here. Welcome again, Buddy

 

[soapbox]

Hi, and welcome.

Middle school. Sigh.
So many kids "hit the wall" about now.
This is when there is a major transformation of school expectations.
The work gets MUCH harder, the volume is much higher, and the assumption is that you have mastered all the basic skills... reading, writing, core math, etc.

Reality is... it ain't necessarily so.

Switching schools right now is also really tricky - its often said that these are the worst ages to move a kid.

There WILL be one or more reasons for all that is happening.
You won't know what the solutions are, until you get to the bottom of the causes.

When going through the evaluation process, please consider adding the following, as they often get missed...

1) hearing
2) auditory processing - starts with Speech Language Pathologist (SLP) evaluation, then usually advanced auditory specialist - doesn't necessarily have to be a language problem, can be difficulty listening in the presence of background noise.
3) motor skills - fine or gross, can be very subtle and still cause huge issues at school - this would be an Occupational Therapist (OT) evaluation. Occupational Therapist (OT) doesn't do dxes, but can substantiate issues...

 

[BusynMember]

Buddy, each state is different regarding getting services if your child is in private school so it depends on where she lives. In Wisconsin, if your child does not go to public school, you are not entitled to services or the normal testing or an IEP. It's different...the poster should call her Dept. of Public Education to find out the laws in her state

 

[BellJar]

Hi there!

I am very new as well and definitely not the most knowledgeable here but I will say what jumped out at me about your post was the anxiety. It seems to me as if your son could be struggling with a lot of it; especially with the way he's shutting down and avoiding anything that he feels he can't deal with. And middle school is SO hard whether your child is easy child or difficult child. It's the time when they are just bombarded with hormones and transitions and all this scary, overwhelming life stuff. I would also suggest with the others that transferring schools may just increase the issues and it sounds like his school has really tried to work with him. I would definitely talk with his doctor and see if they also think anxiety could be an issue for him and how it can be addressed. Hang in there!

 

[buddy]

I certainly can be wrong. Have been and will be. But I suspect there is a chance. This info is not our state, is part of IDEA, federal law and maybe there are loop holes or whatever, but this is how I was trained and always told it was part of federal law so we had to do it. I found two sources to support that you could request an evaluation from your district (LEA).

the idea requires all states to develop and implement a practical method of determining which children with disabilities are receiving special education and related services and which children are not. (20 u.s.c. 1412(a)(3); wrightslaw: Special education law, pages 72, 206-207).
who is covered by child find?
schools are required to locate, identify and evaluate all children with disabilities from birth through age 21. The child find mandate applies to all children who reside within a state, including children who attend private schools and public schools, highly mobile children, migrant children, homeless children, and children who are wards of the state. (20 u.s.c. 1412(a)(3))
this includes all children who are suspected of having a disability, including children who receive passing grades and are "advancing from grade to grade." (34 cfr 300.111(c)) the law does not require children to be "labeled" or classified by their disability. (20 u.s.c. 1412(a)(3)(b); 34 cfr 300.111(d)).
note: You will find the child find requirements in wrightslaw: Special education law, pages 72, 206-207]

the child find mandate requires each state to devise a practical method to determine which children are receiving the needed special education services, and which children are not. After identifying children who may need services, all necessary evaluations must be completed on these children, at no cost to parents.
the individuals with disabilities education act mandates "general public notice obligations", i.e., using notices to inform and educate the public about the need to locate and identify all children with disabilities.

34 C.F.R. §300.451 Child Find for private school children with disabilities.
(a) Each LEA shall locate, identify, and evaluate all private school children with disabilities,
including religious-school children residing in the jurisdiction of the LEA, in accordance
with §§300.125 and 300.220. The activities undertaken to carry out this responsibility for
private school children with disabilities must be comparable to activities undertaken for
children with disabilities in public schools.
(b) Each LEA shall consult with appropriate representatives of private school children with
disabilities on how to carry out the activities described in paragraph (a) of this section.
(Authority: 20 U.S.C. 1412(a)(10)(A)(ii))
34 C.F.R. §300.452 Provision of services—basic requirement.
(a) General. To the extent consistent with their number and location in the State, provision
must be made for the participation of private school children with disabilities in the
program assisted or carried out under Part B of the Act by providing them with special
education and related services in accordance with §§300.453-300.462.
(b) SEA Responsibility-services plan. Each SEA shall ensure that, in accordance with
paragraph (a) of this section and §§300.454-300.456, a services plan is developed and
implemented for each private school child with a disability who has been designated to
receive special education and related services under this part.
(Authority: 20 U.S.C. 1412(a)(10)(A)(i))

 

[helppls]

Thank you , Ma Kettlel, Hound Dog, Midwest Mom, Malika, Keista, Buddy, and Soapbox, for your responses. It’s very comforting to have a place to come and be supported. I don’t mind questions at all, and will try to answer them below (but it’s looong---let me know if you need the Cliff Notes version!), as well as update you on our last 48 hours…….

difficult child’s History:

1. #2 (let’s call him Ben) was induced at 41 weeks for social support reasons. Induction was started with Cytotec/Misoprostal. We later learned that this drug can be disastrous, but we didn’t know that then. After the second (of 2) administrations of Cytotec, I went to sleep, and woke up maybe 3 hours later in transition (but didn’t realize that’s what it was). “Ben” was almost immediately in acute distress on the monitor and NICU was called. I was told that the rapidity of the birth process was potentially causing Ben to go into shock, and that he needed to be delivered NOW---push 100% of the time, full force, contraction or no. When he was being delivered, the cord was revealed to be so tightly around his neck, strangling him, that it needed to be cut off. Initial APGAR of 5, oxygen treatment boosted 2[SUP]nd[/SUP] APGAR to 8. He was taken to NICU for more oxygen and observation, and returned to maternity 3 hours later. Able to nurse shortly thereafter.
2. Normal developmental milestones for talking, walking, turning, crawling, etc.
3. I learned early that it was best to be home between 2-8 pm, as this could be a very fussy time for Ben, and he would sometimes have “marathon” nursing sessions lasting over an hour. Other than this, he was happy, content, very cuddly and affectionate.
4. Multiple ear infections, probably somewhere between 5-9.
5. Repeated bouts of croup, the most recent coming only last year, when he was 10 years old.
6. At 2 years, Ben fell and bit entirely through his tongue. He received Versed and Ketamine in the E.R. as an anesthetic during suturing of his tongue. He required very large doses to even slightly calm him and staff expected him to be sedated over three hours. He awoke fully within 30 minutes. The following day his pediatrician described the amount of medication administered as “enough to provide general anesthetic properties for an adult male”
7. Ben attended preschool, as had big brother “Abe”, and as does little brother “Cal” Of the three, he has shown the most separation anxiety, but it’s in line with what I’ve seen in these kinds of situations. He was the worst at his preschool for his year, but not worse than the worst on Abe’s or Cal’s years, let’s say. However, Ben did have a season when all he wanted to do was to stay home. He went from having separation anxiety at drop off and then enjoying the day to talking at the end of preschool about how he still wished he’d been at home. That year I gave Ben two weeks of Spring Break, his from preschool, and Abe’s from Kinder, which was the next week. He successfully returned to school after the two weeks off. When it was time for Ben to attend preschool, I remember telling friends that I thought Ben would be happiest as a home-schooled child, but that I didn’t think I could manage the power struggles that would come with the territory of being both teacher and mom.
8. When Ben was four, he saw an Occupational Therapist (OT) once weekly for about six months for general fine and gross motor skill development, as Abe had when he was that age.
9. Ben begins Kinder at a small, fairly elite, private school, similar to the one he now attends.
10. In 1[SUP]st[/SUP] grade, Ben’s teacher suggested that we have him evaluated for possible attentional or reading issues. We had a general psychiatric and educ. assessment at a local university. Ben was diagnosed with ADHD and dyslexia. Many ODD characteristics were noted on evaluation, but the diagnosis wasn’t made, as it was hoped that these behaviors were in response to feeling unable to focus and not doing as well in school as he wanted to. General Intelligence measured nearly two Standard Deviations above the mean, Processing Speed measured at the mean, Working Memory measured about one standard deviation below the mean.
11. Dyslexia remediated through private tutoring, twice weekly through 1[SUP]st[/SUP] grade and that summer, once weekly through most of 2[SUP]nd[/SUP] grade. Ben reads prolifically and well above grade level.
12. ADHD treated with medication: initial trial of Daytrana was failed due to negative, existential, perseverative thoughts on rebound. Adderall XR trial well tolerated, titrated up to 15 mg. This works well from the end of first through the start of third grade. Sleep issues did occur, Melatonin 1 mg used.
13. In 3[SUP]rd[/SUP] grade, Ben’s school announces that they will close due to financial problems at year’s end. Ben is devastated.
14. In late fall of 3[SUP]rd[/SUP] grade, Ben said that he needed more “concentration medicine” Adderall XR increased to 20 mg, a week later Ben said this wasn’t adequate support. Dosage increased to 25 mg, and within a week Ben has suicidal ideation, was really irritable---generally looks a lot like he does now. Stimulants discontinued, medication care transferred from pediatrician doctor to psychiatric doctor for evaluation of suicidal ideation, etc. psychiatric doctor. determined that SI was result of stimulant side effects. Guanfecine trial produced no helpful results. Strattera on own also not helpful, seemed to be potentially agitating, especially at higher doses. Finally, after about 4 months of being stimulant free, psychiatric doctor re-introduced Adderall with Strattera, transferred care back to Peds doctor.
15. Ben applies to a number of similar schools during the time he is stimulant free. He is rejected by all except for the school big brother Abe transferred to the year previously (we saw the writing on the wall). This school, his current, will not take him this year, but agrees to reconsider the application on another year.
16. Ben spends 4[SUP]th[/SUP] grade at a nearby religious school, complains of boredom, learning nothing, hating homework.
17. Strattera replaced with Intuniv, for weight gain reasons, well tolerated change. Good growth pattern following.
18. Ben transfers to his current school for 5[SUP]th[/SUP] grade. Although he still wishes he could return to his first school (now closed), he is glad to go to this new school.
19. Ben complains of allergic like symptoms and is feverish in the spring of 5[SUP]th[/SUP] grade (last year). Peds refers him to the ER because of throat constriction. ER does a CAT scan, says the glottis is infected, and they suggest overnight hospitalization because of the swelling in Ben’s airway. Dechadron steroids are ordered to reduce inflammation. Ben becomes very agitated, Ativan is given. He develops visual hallucinations which persist for 24 hours, he does not “feel himself” for another three days.
20. Ben moves from the elementary to the middle school division of the school. First couple of weeks go well, the Ben begins to complain that there’s too much homework. And that he needs more medications for ADHD symptoms during the day.
21. Intuniv increased to max. dosage, from 3 to 4 mg. Ben still felt he needed more support, so Adderall increased to 25 mg. Ben became more irritable, so we backed down again to 20 mg. Ben later confessed to Suicidal Ideation while on the 25 of Adderall. pediatrician doctor feels Ben is “tachyphalactic” (not responding) on Adderall, titrates off, initiates short-acting Ritalin trial. 5 and 7.5 mg trials are tolerated, but not therapeutic. 10 mg dose produces feelings of racing heart, Ritalin discontinued.
22. Ben is evaluated in the psychiatric ER on Day 2 of school refusal, acute anxiety and possible depression suggested. He is discharged to home, with recommendation for group tx of anxiety

Family History:

1. husband has mild depression, finds life easier with medications than without. husband’s dad likely had Obsessive Compulsive Disorder (OCD).
2. My father has undiagnosed dyslexia, minimally dysthymia, very limited social life and social skills. A binge alcoholic while I was growing up, he quit when MD said it would kill him.

Last 48 hours:

Ben pulled out a small patch of his hair on Monday night (the night he announced wanting to shave it off so he would look outside how he feels inside). He did go to school the next day, however. But this morning he again refused to go to school, stating that he would be humiliated by not having worked on a group project, and that he’d rather be dead than to go to school. School has suggested it’s time to look at day treatment or intensive outpatient. We’ve got calls in, and the psychologist with whom we met for the first time on Monday just called and said he could see Ben several times weekly, or work with IOP at the hospital, if needed.

A general response to your wise counsel:

I really appreciate the wisdom each of you shared, and the general consensus that, given that the school is a supportive community which isn’t doing harm, why ditch it for the unknown during a time of stress. You are right. And, it helped me to clarify that I was, as I continually struggle with, again futurizing. I hadn’t meant to suggest that we’d pull Ben immediately, but that it felt that in the end the more pressure cooker aspects of this school environment, which co-exist with the warm fuzzy parts, will prove to not be a good fit for Ben. So, when the crisis is over, I think that’s the conclusion we’ll reach, and I wonder what will happen then. But we’re not to then yet, so I don’t get to worry about that, huh? Today’s enough!

We do think it would be good to have neuropsychologist testing done. We were hoping to get to a place where Ben was back on medications and stable to do it, to have a look at how he functions at a more "normal" level. But maybe not? Thank you, Buddy, for the info about getting the evaluation done through the schools. That's good to know---wonder how long it takes?

Thank you, thank you, and always open to more thoughts....

Helppls

 

[helppls]

All that, and I realized I forgot that he tends to be well liked, social, but stinks with transitions.

Again, many thanks to you all,

Helppls

 

[buddy]

1. At 2 years, Ben fell and bit entirely through his tongue. He received Versed and Ketamine in the E.R. as an anesthetic during suturing of his tongue. He required very large doses to even slightly calm him and staff expected him to be sedated over three hours. He awoke fully within 30 minutes. The following day his pediatrician described the amount of medication administered as “enough to provide general anesthetic properties for an adult male”

This and the other things you said about medication reactions that were unusual....the hospital with the hallucinations etc...

I have talked about this on other threads and a couple of others have chimed in. My son also got enough medication. to knock out a man when he was 3 yrs old for an MRI. He barely fell a little asleep and that was after I kicked everyone out of the room and turned the lights off and rocked him to sleep.

Over the years he has had strange responses to starting medications, some dont work, some he needs huge amounts of and others only a little sends him off the deep end. Our pediatrican finally did a liver enzyme study to see how his body processed medications. It turned out he had a major problem with one enzyme system and the levels were little to none of the enzymes needed to process medications. so, sure enough, there were certain chemicals/medications that were listed that he would be overly sensitive to and others that would probably just not work, and if they did he might need a large dose.

I have been told 6-7% of the population has this, so not super rare but it is a big deal for people who really need medication to get along in life....

If you check and it is not a problem, that is wonderful...just the usual tough time medicating that some people have. But if you find out it is an issue it sure helps to elminate false leads/waste of time trials of medications.

 

[helppls]

Hi Buddy,

That is so helpful to know. I've always thought there must be something to account for Ben's weird responses to medications. Do you know what kind of a liver enzyme test this is? Or is there just one type? Totally new information to me.

Many thanks,

Helppls

 

[buddy]

I will see if I can find the paper work for it.... I think though if you ask for a liver enzyme study for medications they will know what you mean.