At Wit's End - Son With Possible OCD? Anyone With a OCD Child?

[gummibears]

For quite some time I've suspected my 8 year old has a form of OCD. The school reports behavior issues and has since Kindergarten wanted to slap a label on him as being EBD we've fought this for many reasons. He has his good days, and has a lot more bad, sadly. It's not for lack of parenting and teaching him right and wrong. It seems that's all we ever do anymore.

Last night we got a form that this school (his third, now) wants to access him for placement in special ed for disorders. This is something we are against for many reasons, so we are pretty worried now what will happen as the form says they can hold a due process hearing even after you say NO to basically FORCE you to have it done. Which will happen over my dead body, since that will make him get picked on and likely result in medication with anti depressants which we won't allow.

However, the OCD issue I think is right and he does have it (which is not something the school is looking to identify) Last night he got to bed on time, which isn't always the case. You know how kids are stalling and all. Anyway, he proceeds to come down 5 times through the night asking if this thing and that thing if touched will hurt him. (Hurt as in germs) We say no and he goes up until a few mins later and he's got another question. Then there was one about a fire fear, too. With an item that's not even plugged in.

He has massive germ issues and they are really causing issues for us and him, though he doesn't see it that way. This morning he wasted time washing a cup out (again) and then SCREAMED because there were soap bubbles in the sink and he REFUSED to brush until they were gone. Well, this was 2 minutes before we had to leave the house, so I told him he's gotta brush anyway and he just goes WILD. I said it's soap. It's clean. It's not going to hurt you OR your brush we gotta go or we have to walk! (It's a 5-block walk) He wouldn't move past it until I was forced to yell to get him to get past it. As a result he wasted all his playing and relaxing time before school with this behavior.

Then on the way to the bus he's holding saliva in his mouth again wanting to spit it out. (He will come home with boogers and spit on his shirts and that's ok for  his germ fear, but to put them in a tissue or to swallow the saliva is forbidden.) I had to force him to swallow it to PROVE to him that he's not going to be hurt by it. He said there were "Weird flavors" in his mouth and he didn't want to swallow it for that reason.

He washes his hands excessively. Last night he was washing them and went to wash a second time right after. Some times he comes out of bathroom with RED  hands because he thinks he needs very hot water to cleanse them. They tend to crack and bleed, too when the weather is cold and I think his washing has a lot to do with it.

Walking by houses with chipped paint causes him to seal his mouth shut tight and refuse to talk because he thinks lead paint will get in his mouth (not even knowing if it IS lead paint) DRIVING by a fence with chipped paint results in similar issues most times. Some days he'll say he got past it and he's normal. Then it starts right back up again soon after.

From what I'm able to tell he has three OCD areas: Germs, Fire fears (including unplugged objects) and perfection.

He also worries excessively about tornadoes and thunderstorms, which my mom blames on me because when we lived in a mobile home we'd evacuate when the sirens sounded, which is what they said to do on the weather reports. It's not our idea, it's general safety for those that live in those kinds of homes. Now we live in a regular home with a cellar we can go in if needed during sirens, but he's still not really any calmer when he knows there are storms in the forecast.

In school I get reports that he erases things, rewrites the same and repeats. This I think is his perfection issue as well. Today I went online to look at remedies to cure it that do not require medicines we are against and I found this page: http://kidshealth.org/kid/feeling/emotion/ocd.html

Sarah sounds a lot like my son, sadly. I just don't know what to do because I won't allow antidepressants into his system for numerous reasons. Are there other ways to help him that are NON medicinal? What have you done with your OCD child to help?

Edited by gummibears - 5/20/11 at 7:15am

[Purple*Lotus]

I do not have a child with OCD, but I was a child with OCD.  My Mother can trace it back to when I was 2.  It is weird to think about me having rituals at such a young age.

Back then it was not that diagnosed, so I was 14 before anyone labeled it and I got help from it.  Therapy helped a lot.  I also took medication for it and that was helpful, as well.  I am grown now and I still take medicine and I still go to therapy.  I am so much better.  One thing I would not do is to force him to go against his rituals.  That will only make him more anxious.  More scared.  I wish you the best, it is a hard road and I hope your little guy gets some relief.

[LynnS6]

Why are you so concerned that he not get put into special ed? Why are you so afraid of medication for OCD?

No one wants these things for their child, but to me, the essence of AP is meeting the needs of your child. Sometimes meeting those needs means taking a hard look at our principles and ideals. It also means taking a hard look at our fears. Now, I'm not suggesting that you rush out and medicate your child, but both the school and your son are telling you that he's feeling out of control. Clearly, he needs some help.

As someone who comes from a family with mental health issues, I get frustrated at times because there's a huge double standard in many circles, but natural living circles in particular, when it comes to mental health. If your child has Type I diabetes, people don't tell you not to give insulin. If your child suffers from debilitating anxiety, I'm told that giving him medication is never to be considered  I'm convinced that something like OCD, especially in one so young, is biochemical. You can do a ton with therapy, but sometimes medication is truly a life-saver. Therapy helped me understand my symptoms; medication gave me my life back.

Can you get a referral to a therapist who works with young children and their families? You might start in Finding Your Tribe. I'd also recommend Tamar Chansky's book "Freeing Your Child from OCD" for you. It's a good place to start. She also has a very balanced approach and does not advocate medicating at first glance. But she does have a decent section on when you should consider it.

[gummibears]

Originally Posted by Purple*Lotus 

I do not have a child with OCD, but I was a child with OCD.  My Mother can trace it back to when I was 2.  It is weird to think about me having rituals at such a young age.

Back then it was not that diagnosed, so I was 14 before anyone labeled it and I got help from it.  Therapy helped a lot.  I also took medication for it and that was helpful, as well.  I am grown now and I still take medicine and I still go to therapy.  I am so much better.  One thing I would not do is to force him to go against his rituals.  That will only make him more anxious.  More scared.  I wish you the best, it is a hard road and I hope your little guy gets some relief.

There's a big difference between 14 and 8 where my son is, though. At a teen I'd be a bit more open to medications, but absolutely not now. Medicines often do as much harm as they do good, if not more harm than good, so I'm not even remotely open to that option with him.

The forcing to go against rituals seems to help him after the fact, though because it proves to him there's nothing to fear. But it's keeping that reminder in his head that's hard to do, and it doesn't cover everything. I do know part of therapy can consist of making them face fears head on as well.

[gummibears]

Originally Posted by LynnS6 

Why are you so concerned that he not get put into special ed? Why are you so afraid of medication for OCD?

No one wants these things for their child, but to me, the essence of AP is meeting the needs of your child. Sometimes meeting those needs means taking a hard look at our principles and ideals. It also means taking a hard look at our fears. Now, I'm not suggesting that you rush out and medicate your child, but both the school and your son are telling you that he's feeling out of control. Clearly, he needs some help.

As someone who comes from a family with mental health issues, I get frustrated at times because there's a huge double standard in many circles, but natural living circles in particular, when it comes to mental health. If your child has Type I diabetes, people don't tell you not to give insulin. If your child suffers from debilitating anxiety, I'm told that giving him medication is never to be considered  I'm convinced that something like OCD, especially in one so young, is biochemical. You can do a ton with therapy, but sometimes medication is truly a life-saver. Therapy helped me understand my symptoms; medication gave me my life back.

Can you get a referral to a therapist who works with young children and their families? You might start in Finding Your Tribe. I'd also recommend Tamar Chansky's book "Freeing Your Child from OCD" for you. It's a good place to start. She also has a very balanced approach and does not advocate medicating at first glance. But she does have a decent section on when you should consider it.

We (both my husband and I and some family) feel special ed is not the answer, but rather that these labels will make MORE issues where kids will pick on him and he'll feel he's not a good kid or 'normal' because he's been separated into a group outside of that of his peers. We are not looking to create more problems in the least. Same for the medications that have MANY unsavory side effects we are not willing or able to have him subjected to. He's only 8 and he's very small (low weight despite attempts to increase it) and his body doesn't need the extra strain that medicines put on it.

Yes, he might need help, but help doesn't always come in a bottle. There are other methods that don't cause bad side effects that should be and can be tried first. I view medicating a child of his size and age as an absolute last resort and even then I'd think three times or more before allowing it, and would likely not allow it until he was older and bigger to handle it better. What the school wants to label him require anti depressants that cause them to lose weight/not eat (which for him would make him underweight and that's no good), make him sick and essentially a 'zombie,' as well as cause other issues like diseases that are incurable and suicidal thoughts which are not appropriate for a child his age. We are not willing to place him on anything like that no ifs ands or buts. I've seen many kids with these side effects, enough to know it's not for us or him. He doesn't want the medicine any more than we want it for him, we are all in agreement on that.

I'm not sure about the referrals, but I can look into the book and the forum. Thank you for the starting points/suggestions. I've been online looking at things but they only go so far in depth and all.

[Shami]

If you are against bringing the school professionals into it (I totally understand why you feel that way) maybe you could go to your own provider and get a referral.  This must be so hard for you.   I really don't know much about how they treat OCD.  I just wanted to say that maybe you should seek a professional psychiatrist and get a couple of opinions before deciding what you don't want for him.  I completely get your concerns in every area you mentioned, but until you have heard out all of the options....consider being open to at least hear what a professional psychiatrist would do for him.  You don't have to do what they suggest...just hear them out and get several opinions.  How do you know about the medications?  They may not even prescribe meds right now.  Maybe they would just try therapy. 

The previous poster said therapy really helped her and she suggested that you don't force him to give up his rituals because it causes more fear/anxiety.  Your response was to say that it helped him.  Of course, only you know your child, but until you really get  professional opinions it would be difficult to know for sure if your approach is really helping him, or if he is just going along with you.

I am trying to be as gentle as possible because I have no earthly idea how hard this is and scary.  Maybe you just wanted just some moms to give you some ideas for how to deal with it?  You don't seem ready to seek out professional help, yet.  I can understand that would be scary to hear what they have to say.  You may have to face some of your own fears before you can help your child.  You may be surprised to find out that professionals can help you to help him.  Wishing him and your family the best.

[Purple*Lotus]

Okay, sorry I posted.  I misunderstood and thought you were looking for help and suggestions and I thought that my personal experience would be helpful.  I remember how miserable I was as a child suffering with OCD, I would love to help prevent another child from suffering in the same way.

[gummibears]

Originally Posted by Shami 

If you are against bringing the school professionals into it (I totally understand why you feel that way) maybe you could go to your own provider and get a referral.  This must be so hard for you.   I really don't know much about how they treat OCD.  I just wanted to say that maybe you should seek a professional psychiatrist and get a couple of opinions before deciding what you don't want for him.  I completely get your concerns in every area you mentioned, but until you have heard out all of the options....consider being open to at least hear what a professional psychiatrist would do for him.  You don't have to do what they suggest...just hear them out and get several opinions.  How do you know about the medications?  They may not even prescribe meds right now.  Maybe they would just try therapy. 

The previous poster said therapy really helped her and she suggested that you don't force him to give up his rituals because it causes more fear/anxiety.  Your response was to say that it helped him.  Of course, only you know your child, but until you really get  professional opinions it would be difficult to know for sure if your approach is really helping him, or if he is just going along with you.

I am trying to be as gentle as possible because I have no earthly idea how hard this is and scary.  Maybe you just wanted just some moms to give you some ideas for how to deal with it?  You don't seem ready to seek out professional help, yet.  I can understand that would be scary to hear what they have to say.  You may have to face some of your own fears before you can help your child.  You may be surprised to find out that professionals can help you to help him.  Wishing him and your family the best.

Yes, I had considered going outside of the school to do this. I don't trust the school at all and don't want him to be labeled for his duration there for good reason. They seem to just want to label him all the time (since kindergarten we've fought this.) Yes, I want to get him help, but can't it be done without grouping him outside of his peers? Apparently to them, it can't and that just seems plain unfair.

Well, in terms of the antidepressants I know from 2 people that had kids on them and seeing how these kids act and how it makes a third one sick. I also researched online about them as well, though I know that info isn't always the end all be all, but it does help a bit mixed with the other parents whose kids are on it that I've spoken to. The meds for OCD I'm not too familiar with, but since it's an anxiety thing and anxiety is typically medicated by antidepressants I'm pretty sure they are no better, but I've yet to look at them one by one to know for sure.

I'm not even sure he has any of these things they think he has or I suspect he has, but it's possible. I'm not going to dive head-long into the whole medication thing for that reason alone. I do know that when he's calmer, like today, he tells me I'm the best mom because I show him there's nothing to fear by making him see for himself (by facing his fears head-on and doing things he's afraid to do) and that it helps him. So, I'm not just assuming it helps him, he has told me that it does on numerous occasions. It's different, but again he's young so he might not fully know, but he knows better than I what helps him with his fears, you know?

However, you do have a point about him maybe going along with me and not really knowing if it helps or not. I mean he's so young would he really know for sure if it helped or if he's having a lull in the symptoms? (This isn't a daily thing it comes and goes, so it's possible he could mistake that for it being better when it's just a lull) The problem is it seems to be a sort of temp fix because he goes in phases between "I know this is ok you showed me it was" to "It's not okay" based on unknown variables. I'd really by all accounts like to stay away from meds (and this is something I try to do for myself as well. We are a homeopathic sort of family who tries not to medicate unless the good outweighs bad and there's no severe side effects of the meds.)

Right now I'm kinda weighing my options, limited as they are to try to get a grasp on what direction we can/should take. I guess that's more what I was looking to achieve by posting as well as get input of others think it's possible he has OCD as I'm not sure, but suspicious he probably does. I'm hoping that there's more options other than the meds like therapy, but I know that will make him uncomfy as well, so not sure how that would work. He's not comfy with people he doesn't know and there's a possibility that therapy would fail because of that, but it's not a guarantee it'd fail either. Ugh. I just don't know, but I do wish the school would back off. They only gave him 3 months (and this was after several large life changes happened) before they wanted to label him and put him in the disability category. For what it's worth, you can't diagnose an EBD in less than 6 months according to the state papers I've read, so I'm not allowing them to jump the gun so fast just to make the teacher's job easier.

I know people feel meds help, and for some I bet they do. But for those I know it has only made things worse. The kids are never the same after, and in a bad way not good, they are sick, zombified and sedated-like. I don't want that for my kid. Who would? Some of those same kids act the same with and without the meds, so it doesn't even seem like they do what they are supposed to. However, they sure do have those side effects despite not working to 'cure' the problem they were prescribed for. And the antidepressants always have to be changed/upped in dose to be effective. I don't like that with other's kids none the less my own. There's got to be another way, hasn't there?

I do know consulting someone to get an idea what there is out there would help, but I don't want to get someone who feels medicine is the end all be all cure and not give alternate options either. Not sure how to find someone who would offer other suggestions first and that last, though. I don't know any doctors here at all.

Edited by gummibears - 5/21/11 at 8:31pm

[gummibears]

Originally Posted by Purple*Lotus 

Okay, sorry I posted.  I misunderstood and thought you were looking for help and suggestions and I thought that my personal experience would be helpful.  I remember how miserable I was as a child suffering with OCD, I would love to help prevent another child from suffering in the same way.

I'm looking for suggestions to get an idea what possible treatments are out there aside from medicine, which the schools seem to hand out like candy. My son has said he doesn't want it either, so it's not just us. We all agree that the side effects are too severe.

How severe is his possible OCD? I don't know? Depending on the day it's mild to moderate... maybe even more than moderate on the worser days. But it's hard to really say as I don't know the scale of how bad it can be for others, just how he acts. This is where seeking others would help, and I know that's nothing that can be done online, though. However, I did think that others that are familiar with it could tell me if I'm correct that he may have it or if I'm identifying it incorrectly as part of a starting point to know what, if anything, we are dealing with here before we make expensive doctor apts (which, by the way he doesn't want because he's terrified they will try to medicate him and he, too, doesn't want medicine.) That's one reason we've not taken him in to a doctor, but the other is that we wanted to be more sure there was a need to and to figure out who is good around here.

I don't want him to suffer (if he has it) but suffering on meds isn't good either, right? That's why I'm hoping there's other options be it therapy, herbal (which usually comes without the severe side effects) and whatnot that we can try to help him with first/instead.
 

[Shami]

Have you tried any diet modifications? If you are wanting to explore the more natural route, I'd start with an elimination diet. I have heard they are extremely difficult and even harder for children. Or you could try the GAPS diet. So many moms on MDC have changed their kids behavior with a strict and clean diet.

If I were you I would explore both routes at the same time. I would still want to get several psychiatrists' opinions and probably blood work goes along with this because many mental illnesses are caused by an imbalance with the brain chemistry. On the side of nutrition, I would start by eliminating all sugar, preservatives, and food dyes.

Oh and another thing i would do is to begin logging EVERYTHING. While you are considering all your options, begin to log his behaviors, the food he ate that day, and the activity level as well as the activities he participated in that day. You may be able to see possible 'triggers'. This info would be very useful down the road...to be able to compare and contrast his 'good' days and his 'off'' days.

Summer is coming up so maybe you could hold the school officials off for the remainder of this year and really dive into exploring on a deeper level what is going on with your son.

There is a chiropractor in my area that is also a nutrition expert. He does a form of testing on patients, which is very thorough. He tests hair and blood samples to see which vitiamins you are deficient in and also any metals (lead, mercury, etc.) that have accumulated and could be causing problems. Then he prescribes certain foods and supplements. After a period of time you get retested to see if it has helped. He has a local talk show and I have learned so much from him. He is known for exposing the over medicating going on in the medical field.

That said, medical technology has extended our life and in many cases also gives us quality of life. My dh has high blood pressure that is not cured by diet and exercise...it's genetic. Being on his medication should extend his days and hopefully avoid a massive stroke. So, while I understand your feeling about medicating, especially a growing boy, there are cases in which it does benefit the person. I will say this with a gentle tone. Since we are online and you cannot hear my tone, please know that I am saying this with compassion. Your son is afraid of medicine because of hearing you speak about it in that light. You may want to consider a more balance approached so that if it comes to a point in which he needs medicine for this or some other thing, he won't have an added anxiety. You could give many examples of medicine saving lives and preserving the quality of life.

Finally, if you are a praying person...pray for wisdom and the strength to do what is necessary for your boy. I don't know how to end. Rarely do I respond to posts that I have no experience with, but for some reason your post struck a nerve for me and I have been considering your situation quite a bit.

[LynnS6]

You might want to post on the Special Needs board too -- there are parents there who have kids who have some pretty serious conditions (childhood bipolar, for example).

I would definitely encourage you to seek out a private evaluation. Most therapy at this age is often play therapy or something like art therapy. Not many 1st graders are great at sitting around and talking about their emotions! And most therapy at this age has a strong parental involvement, as they're working with you (or should be -- I wouldn't go to a therapist who didn't) to have you help your child learn new skills. As your son gets older, they might be able to try Cognitive Behavioral Therapy (usually they wait until 8-10 for that to really be able to work), which has a good success rate for things like OCD.

I wholeheartedly agree that it's a bad idea to start with meds. Meds should be a last resort, IMO. But there are times when everything else fails. I haven't a clue what they'd give for pediatric OCD, and I would think it would have to be pretty debilitating before they'd consider it. But I do know children (yes children) who've been on psychiatric medicines and it's made a big difference. They didn't need to be on them for life, but they did need to be on them long enough for them to get to a place to learn new skills. Not all medicines turn you into a zombie or change your child.

If you're going to read, I would recommend something like MedLine through your library and make sure it's a reputable source. The internet is full of iffy information.

Finally, while I understand your fear of having your child labeled by the school, I would also point out that without a diagnosis, he is being labeled because something about his behavior is really standing out to the school. And probably none of those labels are flattering. If he gets an appropriate diagnosis (through someone other than the school, since you seem to have some trust issues with the school), can the school give him appropriate accommodations? The have a legal obligation to do so. Is what's in his file in 1st grade really going to follow him for life? If they can't assure you that they can meet his needs, is that the right place for him to be?

[gummibears]

Originally Posted by Shami 

Have you tried any diet modifications? If you are wanting to explore the more natural route, I'd start with an elimination diet. I have heard they are extremely difficult and even harder for children. Or you could try the GAPS diet. So many moms on MDC have changed their kids behavior with a strict and clean diet.

If I were you I would explore both routes at the same time. I would still want to get several psychiatrists' opinions and probably blood work goes along with this because many mental illnesses are caused by an imbalance with the brain chemistry. On the side of nutrition, I would start by eliminating all sugar, preservatives, and food dyes.

Oh and another thing i would do is to begin logging EVERYTHING. While you are considering all your options, begin to log his behaviors, the food he ate that day, and the activity level as well as the activities he participated in that day. You may be able to see possible 'triggers'. This info would be very useful down the road...to be able to compare and contrast his 'good' days and his 'off'' days.

Summer is coming up so maybe you could hold the school officials off for the remainder of this year and really dive into exploring on a deeper level what is going on with your son.

There is a chiropractor in my area that is also a nutrition expert. He does a form of testing on patients, which is very thorough. He tests hair and blood samples to see which vitiamins you are deficient in and also any metals (lead, mercury, etc.) that have accumulated and could be causing problems. Then he prescribes certain foods and supplements. After a period of time you get retested to see if it has helped. He has a local talk show and I have learned so much from him. He is known for exposing the over medicating going on in the medical field.

That said, medical technology has extended our life and in many cases also gives us quality of life. My dh has high blood pressure that is not cured by diet and exercise...it's genetic. Being on his medication should extend his days and hopefully avoid a massive stroke. So, while I understand your feeling about medicating, especially a growing boy, there are cases in which it does benefit the person. I will say this with a gentle tone. Since we are online and you cannot hear my tone, please know that I am saying this with compassion. Your son is afraid of medicine because of hearing you speak about it in that light. You may want to consider a more balance approached so that if it comes to a point in which he needs medicine for this or some other thing, he won't have an added anxiety. You could give many examples of medicine saving lives and preserving the quality of life.

Finally, if you are a praying person...pray for wisdom and the strength to do what is necessary for your boy. I don't know how to end. Rarely do I respond to posts that I have no experience with, but for some reason your post struck a nerve for me and I have been considering your situation quite a bit.

Shami thank you for replying. This is kinda what I was looking for a place to start, anyway. Diet has long been considered as a trigger, but I hadn't considered dyes to look into.

I will start a log, as I've not seen too much variations between diet so far (well, breakfasts, anyway) as he pretty much has the same thing daily and he's not always having issues. However, lunches and dinners do vary as does the weather and his restfulness.

I'm hoping to hold them off, and am waiting to send back the forms. We will be declining the screening with hopes we can stall and figure this out on our own to some extent without them being involved.

He's okay with OTC meds and meds for like antibiotics, but other ones he's not keen on. We view medicine as a 'as needed' basis. For me, I go through a lot before I accept anything (including child birth, which was med-free) as more often than not the side effects aren't worth the relief the meds offer. Not that this is always the case, it's something we evaluate on a case-by-case basis. Weighing pros and cons and all. There's some medicines he readily takes, but they are few and far between, like the case is with most kids, I presume.

I've often asked through prayer for guidance. I've not found it, but I've tried. I honestly don't know what to do as I've spoke to doctors and they shake their heads and say the same as us. There's nothing wrong with him he's just smart and not being challenged. The school swears up and down that's not the case (despite him being half through the next year of school and having a slightly above average IQ - which is what they told us through their testing) He complains that he doesn't learn anything, which may be something to do with him already knowing the material or with the teacher's approach to learning. Who knows?  It's baffling and frustrating whatever it is.

[gummibears]

Originally Posted by LynnS6 

You might want to post on the Special Needs board too -- there are parents there who have kids who have some pretty serious conditions (childhood bipolar, for example).

I would definitely encourage you to seek out a private evaluation. Most therapy at this age is often play therapy or something like art therapy. Not many 1st graders are great at sitting around and talking about their emotions! And most therapy at this age has a strong parental involvement, as they're working with you (or should be -- I wouldn't go to a therapist who didn't) to have you help your child learn new skills. As your son gets older, they might be able to try Cognitive Behavioral Therapy (usually they wait until 8-10 for that to really be able to work), which has a good success rate for things like OCD.

I wholeheartedly agree that it's a bad idea to start with meds. Meds should be a last resort, IMO. But there are times when everything else fails. I haven't a clue what they'd give for pediatric OCD, and I would think it would have to be pretty debilitating before they'd consider it. But I do know children (yes children) who've been on psychiatric medicines and it's made a big difference. They didn't need to be on them for life, but they did need to be on them long enough for them to get to a place to learn new skills. Not all medicines turn you into a zombie or change your child.

If you're going to read, I would recommend something like MedLine through your library and make sure it's a reputable source. The internet is full of iffy information.

Finally, while I understand your fear of having your child labeled by the school, I would also point out that without a diagnosis, he is being labeled because something about his behavior is really standing out to the school. And probably none of those labels are flattering. If he gets an appropriate diagnosis (through someone other than the school, since you seem to have some trust issues with the school), can the school give him appropriate accommodations? The have a legal obligation to do so. Is what's in his file in 1st grade really going to follow him for life? If they can't assure you that they can meet his needs, is that the right place for him to be?

Thanks for the advice and tips. Yes, I, too have heard of kids as small as 5 being on those meds. Terrifies me and they aren't even my kids. I've also read about those same meds causing other kids that age and older to have heart failure. Not something I'm willing to risk as my son is small and not at all 'husky' it'd likely pack a bigger punch, so to speak, on his body as a result. (And render him underweight as they have no desire to eat on them)

Perhaps the school is labeling him, in fact I know they are to an extent. They already tried to throw a special ed label on him as well as one for a disorder. We fought it and we will continue to fight it as we don't believe it's true. Yes, I do have trust issues with the school. I called and specifically said I don't want this evaluation to lead to diagnosing things and they didn't say it was for that. However, since I did my homework I knew that was exactly what they were trying to do (3 months sooner than you are supposed to diagnose this issue, might I add.) Only once the formal consent forms came did they admit it was for that reason. They also claim I participated in the decision to have this done by calling and asking questions. Uhm, no, I didn't. I just asked a list of questions, I didn't participate and say 'sure let's do this.' All that shows me they aren't 100% on the up-and-up and no, I don't trust them at all. They have their agendas, they always do, and rarely do you learn what they are until it's too late. Seen it in the past, sadly. They make it all sound innocent then you find it's anything but. Anything they label him as (if we consent) would follow him for life. Or at least until 18. That's why we aren't allowing this. We don't want him to be seen as a label, but rather a child who has his good days and his bad days. If there is an issue, still we don't want him to be seen as a disorder or be seen as a special ed kid. Those labels change how everyone - staff and peers see him and we just are not interested in that. It only brings negativity toward him and we need positive to help him not negative.

I'm not certain what the school can do for him. They offered suggestions, well, examples, on the phone that sounded fine and innocent and like they might help, but they won't DO them without putting him under the disabled and special ed umbrella. To that I say forget it. We'll figure something else out first. Kids 'marked' special ed get picked on, and you can bet feeling low and picked on won't improve his issues, but rather make them worse, and yes, they know who is in the special ed category. My own son can tell me who in his class is categorized as special ed, so others will know, too. We don't need him having any more stress as a result of that. What can we do to help and avoid that? I don't know... that's what I'm trying to figure out. It's so hard because nothing seems perfect. Parts of each idea would be good, but other parts aren't as good. Very frustrating especially not knowing where to start to figure anything out.

Edited by gummibears - 5/23/11 at 7:12am

[StephandOwen]

I just wanted to chime in and encourage you to at least talk to the school about what the options are. I can tell you a little about my ds, if it'll help. DS is 7 and has been diagnosed with autism. He's been in the "special needs community" since he was 17 months old. We also believe he has OCD (undiagnosed at this time, but we're fairly confident he has it). He is classified as special needs in the school and it has been a huge blessing for him! He still has a regular ed classroom and he spends most of the day there. Currently he is pulled out to go to his special education resource room either once or twice a day, for 30 minutes each time. When he goes there he works on a couple different things that are too difficult for him to do in the regular ed classroom. One of these things is his writers notebook. They do this every morning, but with his OCD tendencies it does not work out well for him (we actually have a meeting tomorrow with the school to get it added to his IEP that he can type instead of write because it's gotten so bad). Instead of throwing a HUGE fit in the regular ed classroom (which will, undoubtedly, make his peers notice) he goes to the special education room where the teacher can work with him, one-on-one, at his level (so sometimes he writes some of the words and she writes the others, sometimes she writes the whole thing, sometimes he writes the whole thing). It helps him work at HIS level, without being singled out in front of his peers.

I also want to point out that you can agree to the school evaluating him (which, at this point, wouldn't be completed until next fall anyway), but that doesn't mean you have to agree to whatever accommodations they suggest. YOU are an equal partner in this and have as much say as anyone else in those meetings. If you don't agree with their evaluation, you can also get an outside evaluation done (sometimes at the expense of the school district).

"Last night we got a form that this school (his third, now) wants to access him for placement in special ed for disorders. This is something we are against for many reasons, so we are pretty worried now what will happen as the form says they can hold a due process hearing even after you say NO to basically FORCE you to have it done. Which will happen over my dead body, since that will make him get picked on and likely result in medication with anti depressants which we won't allow."

This is not always true either. My son has been in this school for 3 years now (preschool, Kindergarten and 1st grade). All 3 years he's been in the special ed program. Never once has he been picked on. That is something that is absolutely not tolerated at this school (and it is a public school). I don't even think any of his peers recognize that he's in the special needs program. He just goes and sees different teachers during the day, the same as kids who need a little extra help in reading are pulled out into different groups. In fact, my ds boasts that he's "really popular" and has a gaggle of girls constantly following him and helping him with everything he could possible need help with (and a lot that he doesn't need help with! They're little mothers to him when I'm not around!). As for the medication- we are asked every year at his yearly IEP meeting whether he is on any new medications. We tell them no (he's not on any medications that have to do with any of his school issues) and the issue is dropped, not to be brought up again until the next year. And I can tell you that if there's ever a kid that they would be pushing meds for- it would probably be my ds. He has violent episodes where they have to restrain him or seclude him (all done in ways that I have approved of so it's not as bad as it sounds!). He's probably the poster child for medication, but we have no plans to start that and the school knows. They work WITH us, not against us.

[StephandOwen]

Originally Posted by gummibears 

I'm not certain what the school can do for him. They offered suggestions, well, examples, on the phone that sounded fine and innocent and like they might help, but they won't DO them without putting him under the disabled and special ed umbrella. To that I say forget it. We'll figure something else out first. Kids 'marked' special ed get picked on, and you can bet feeling low and picked on won't improve his issues, but rather make them worse, and yes, they know who is in the special ed category. My own son can tell me who in his class is categorized as special ed, so others will know, too. We don't need him having any more stress as a result of that. What can we do to help and avoid that? I don't know... that's what I'm trying to figure out. It's so hard because nothing seems perfect. Parts of each idea would be good, but other parts aren't as good. Very frustrating especially not knowing where to start to figure anything out.

I'm going to say this as gently as possible.... maybe it's time to find a new school? One that you trust and can work together with?

My son is not "marked". He's not picked on (and I'm in the school every single day so I would know- I see with my own eyes the interactions between his classmates and him). I can guarantee you that the children in his class do NOT know who is labeled special ed. In fact, I've been in the classroom almost every day all school year (either dealing with my son, volunteering, or working as a substitute para) and I can bet you a million dollars the kids in his classroom don't know that he's labeled as special needs (as well as the couple other students in his room who are labeled as special needs). For one- nobody at the school uses that term. For another- the teachers work their rears off to ensure that no child is made to feel left out or separated. They do NOT tolerate any behavior from any student that would come remotely close to being picked on.

Perhaps it's time to start emphasizing to your son that all children have a different way of learning and that being diagnosed with a special need IS NOT BAD. Perhaps this is your own personal hang-up, but considering it sounds like your son does, indeed, have some sort of special needs then you might want to find a way to get over it. Otherwise YOU will be the one doing your son a disservice by refusing to get him the help he needs to succeed, simply because you are afraid of a label that YOU have bad connections with.

ETA- I would also venture to guess that the school is probably frustrated with you for wanting your son to have special services and accommodations (which is what this sounds like "They offered suggestions, well, examples, on the phone that sounded fine and innocent and like they might help") but refusing to let them do their jobs. They cannot legally offer him certain services without it being written into an IEP. In order to write an IEP, you have to go through the whole process. You cannot say that you want your son to receive services and accommodations that are meant for children that have an IEP, but refuse to let the school start the process of writing an IEP. That's having your cake and eating it too, and we all know that's just not possible.

[SubliminalDarkness]

I have OCD, and have since I was a child. My DS1 is showing the same signs I was. HOWEVER. My OCD, and so far my son's, do not have an anxiety component per say. I do something in my head that I can't stop, it's basically like numbers running through my head that I canNOT control, so it's not like if I don't do it xyz bad thing will happen. When I was little, though, I did have a terrible fear of tornadoes, and eating out in restaurants, or eating at someone else's house, and various other anxious responses. I was also terrified, for some reason, of flesh eating bacteria. I have no idea why, but it was a debilitating fear for me. And my parents basically blew it off. They told me it was in my head, get over it, let it go, put up with it, and so on. 

What should have happened was therapy.... Cognitive behavioral therapy. And yes, possibly medication. And fwiw, I don't take anti-depressants, I take anti-anxiety drugs. And they help tremendously. My grades improved dramatically when I started them at 16. And then I stopped taking them from about 18 until not so long ago. And I feel much better again now. 

My DS1 is not at that point yet. I'm keeping a close eye on him. I will put him in therapy the second I think he needs it. 

[4evermom]

I like to think that a good psychiatrist doesn't just prescribe a bunch of medication without trying behavioral therapy, first. It really isn't an appropriate first course of action unless there is a violence issue. I'd probably find an outside therapist and see what they suggest. Then you can tell the school you are doing that. They will feel you are taking their concerns seriously but you aren't at risk of being caught in their agenda. Any info about your son that the school gets will be only what you share.

[gummibears]

Originally Posted by StephandOwen 

I just wanted to chime in and encourage you to at least talk to the school about what the options are. I can tell you a little about my ds, if it'll help. DS is 7 and has been diagnosed with autism. He's been in the "special needs community" since he was 17 months old. We also believe he has OCD (undiagnosed at this time, but we're fairly confident he has it). He is classified as special needs in the school and it has been a huge blessing for him! He still has a regular ed classroom and he spends most of the day there. Currently he is pulled out to go to his special education resource room either once or twice a day, for 30 minutes each time. When he goes there he works on a couple different things that are too difficult for him to do in the regular ed classroom. One of these things is his writers notebook. They do this every morning, but with his OCD tendencies it does not work out well for him (we actually have a meeting tomorrow with the school to get it added to his IEP that he can type instead of write because it's gotten so bad). Instead of throwing a HUGE fit in the regular ed classroom (which will, undoubtedly, make his peers notice) he goes to the special education room where the teacher can work with him, one-on-one, at his level (so sometimes he writes some of the words and she writes the others, sometimes she writes the whole thing, sometimes he writes the whole thing). It helps him work at HIS level, without being singled out in front of his peers.

I also want to point out that you can agree to the school evaluating him (which, at this point, wouldn't be completed until next fall anyway), but that doesn't mean you have to agree to whatever accommodations they suggest. YOU are an equal partner in this and have as much say as anyone else in those meetings. If you don't agree with their evaluation, you can also get an outside evaluation done (sometimes at the expense of the school district).

"Last night we got a form that this school (his third, now) wants to access him for placement in special ed for disorders. This is something we are against for many reasons, so we are pretty worried now what will happen as the form says they can hold a due process hearing even after you say NO to basically FORCE you to have it done. Which will happen over my dead body, since that will make him get picked on and likely result in medication with anti depressants which we won't allow."

This is not always true either. My son has been in this school for 3 years now (preschool, Kindergarten and 1st grade). All 3 years he's been in the special ed program. Never once has he been picked on. That is something that is absolutely not tolerated at this school (and it is a public school). I don't even think any of his peers recognize that he's in the special needs program. He just goes and sees different teachers during the day, the same as kids who need a little extra help in reading are pulled out into different groups. In fact, my ds boasts that he's "really popular" and has a gaggle of girls constantly following him and helping him with everything he could possible need help with (and a lot that he doesn't need help with! They're little mothers to him when I'm not around!). As for the medication- we are asked every year at his yearly IEP meeting whether he is on any new medications. We tell them no (he's not on any medications that have to do with any of his school issues) and the issue is dropped, not to be brought up again until the next year. And I can tell you that if there's ever a kid that they would be pushing meds for- it would probably be my ds. He has violent episodes where they have to restrain him or seclude him (all done in ways that I have approved of so it's not as bad as it sounds!). He's probably the poster child for medication, but we have no plans to start that and the school knows. They work WITH us, not against us.

Sounds like you have a good school. I've found that 2/3 schools he's been to are bad. This other one I've not determined if they are bad/good but I'm not really impressed by what I've seen either as a whole. He's been there 3 months and they were pushing even before this (when he was behaving for part of that early time and sporadically through the 3 months) to label him. By state-issued documents used to diagnose the disorder they are to wait SIX months to diagnose it. Yeah, I totally trust them when they give him less than the chance that he's to have by law.

I know kids that are in these programs and even counseling at school that get picked on. I'm glad your son is blessed not to be one of them, but I'm not willing to risk the few friends my son has to find that we are not as blessed. I don't see why they can't offer help without these labels. Why are they so intent on calling him a disorder rather than seeing him as a child and a person and helping him and not worrying about labels? I would say the same thing about an adult. See the person, not a label.

As for the meds, I'm not sure how it is for everyone, but out here I've spoken to other parents that were forced to do yearly psych exams (at a cost to the family of 4K a year) for their child because the school demanded it. They also medicate their child and they do NOT want to do that, but again the school basically forced them into it. Maybe it varies school to school state to state, but this is what I've seen at one of his former schools. Enough to make me not trust them. I'm sure other parents wouldn't trust after knowing what I know either.

Is this school the same? I don't know, but I do know they can and will kick kids out after a while of not behaving. No clue where they go after that, but it's also something we are terrified could happen. It seems this whole situation comes with so much negativity it's hard to know who and what to trust to get him help. He wants help, too, so long as it doesn't include medicines. I'm not sure how he feels about the special ed thing, but he's so smart I'm sure he'd know it's not going to bode well for him. (Another kid in his class is in special ed and other kids in the class have told him not to be friends with this child) So, I know they see it as a bad thing, and I can't really in good faith sit here and say 'sure put my kid who's advanced in learning in special ed.' Is it wrong for those kids to be picked on? Absolutely. My son knows better, but the other kids apparently don't.

I still suspect he's not being challenged enough, or, that the teacher just isn't taking an approach that helps him learn. I know myself some teachers can make the most boring things sound fun, and others can't make fun things look fun. It's all their approach. With all due respect, the teacher does seem fair to him and nice, but that's not to say her learning methods are speaking to him. Many others think the same.. he's not being challenged enough including a doctor. That's not to say that's completely true, but it could be part of the issue. It doesn't matter, though because the school won't even remotely consider that as a potential issue (none of them did even when he excelled on an IQ test they gave him.)

To give an example of teaching issues maybe being a problem: I worked with him for a few months to get his Reading skills honed (he was below grade level on this) in those few months I helped him excel to where he went to this school he was getting advanced grades in reading. The other school could not do that for him in a YEAR what I did for him in a few months. Tell me who was the better teacher and who had better methods? Am I convinced this isn't part of the issue? No. Do I know there's other issues? Yes. I've seen the misbehavior when he's not confident in something he's learning. He'll be naughty to avoid getting a wrong answer. I've seen it first hand.

By the way, he's been in so many schools because the town has it set up so they go to one for K and then an elementary. Then we moved along the way, so this is the third school he's been to. The other two were horrible bad county bad town, I'm not sure which, but they were terrible. Other parents agreed that they are bad schools, so it's not just us.
 

I wish things were as good here as they are for you, and I'm so glad you found something that works. We will too, I suspect, but it'll take some time to delve more into the choices and weigh all the pros and cons. I do know they say we are an equal partner in the decisions and can stop things at any point. I was told that during the call, but still I'm not convinced they are right when I see that they will (or can) hold a court hearing to overturn your denial to consent. That just took away any trust I had in them that we had full control over what happens to him. I've tried to discuss the options with them, but without him being labeled as disordered they won't get into anything specific, and without specifics we won't consent. So it's kinda at a stalemate, which is why I wish they'd help him without the labels. They instead see disorders not children that can be helped and that are just needing a little friendly push in the right direction.

[gummibears]

Originally Posted by SubliminalDarkness 

I have OCD, and have since I was a child. My DS1 is showing the same signs I was. HOWEVER. My OCD, and so far my son's, do not have an anxiety component per say. I do something in my head that I can't stop, it's basically like numbers running through my head that I canNOT control, so it's not like if I don't do it xyz bad thing will happen. When I was little, though, I did have a terrible fear of tornadoes, and eating out in restaurants, or eating at someone else's house, and various other anxious responses. I was also terrified, for some reason, of flesh eating bacteria. I have no idea why, but it was a debilitating fear for me. And my parents basically blew it off. They told me it was in my head, get over it, let it go, put up with it, and so on. 

What should have happened was therapy.... Cognitive behavioral therapy. And yes, possibly medication. And fwiw, I don't take anti-depressants, I take anti-anxiety drugs. And they help tremendously. My grades improved dramatically when I started them at 16. And then I stopped taking them from about 18 until not so long ago. And I feel much better again now. 

My DS1 is not at that point yet. I'm keeping a close eye on him. I will put him in therapy the second I think he needs it. 

Thank you for your viewpoint. I'm wondering how much it's a thought and how much it's anxiety for him. He goes for a while okay saying "I know this is ok because you said it was and I trust you." to having an episode (for lack of a better word) where it's out of control (meaning he's giving in to the fears in some way - even if it's covering his food because he drove by a fence with chipping paint with the car windows closed)

I'll have to do some looking into the therapy issue, which seems harmless enough and like it could benefit him. If we can find someone here that's good. We are new to this area and don't have any idea who's who for doctors. I'm hoping that therapy will take care of the issue and we won't have to worry about the med side of things, but I don't know if that's the case.
 

[gummibears]

Originally Posted by 4evermom 

I like to think that a good psychiatrist doesn't just prescribe a bunch of medication without trying behavioral therapy, first. It really isn't an appropriate first course of action unless there is a violence issue. I'd probably find an outside therapist and see what they suggest. Then you can tell the school you are doing that. They will feel you are taking their concerns seriously but you aren't at risk of being caught in their agenda. Any info about your son that the school gets will be only what you share.

I do agree that any therapy would be done outside the school. Not so sure I'd tell the school about it, though. Maybe after the fact if I needed to 'prove a point' but I'd prefer them to be as in the dark as possible just because I don't know what they are doing behind our backs.