Back to School with OCD

school girls

Many children are either already back at school or heading back this week, so I’d like to share this post I just wrote for Beyond OCD:

Last year at this time I wrote a post about Taking OCD to College. It focused on establishing a good support system for OCD sufferers who are embarking on this exciting, but often anxiety-provoking journey. I discussed how important communication is with all school personnel, from the Dean of Students to teachers. The more support the better.

But what happens when the support you deserve, and are entitled to, is not afforded you? What if one of your teachers thinks OCD is no big deal, or not a real illness? How do you deal with a situation like that?

My son Dan, in his senior year of college, was discriminated against because of his OCD. I know discriminate is a strong word, but it fits. According to the Americans with Disabilities Act (ADA), college students with documented disabilities are entitled to reasonable accommodations. While offering wheelchair ramps for those who can’t walk is an obvious compliance, accommodations for other issues, such as OCD, are not as clear-cut. Unfortunately, there are still many college professionals who know little, or have misconceptions, about obsessive-compulsive disorder. Students themselves might not know what they need until after the fact. Indeed, the complexity of the disorder can make the establishment of accommodations difficult. The Academic Resource Coordinator at Dan’s school, the expert who dealt with students with disabilities, “wasn’t sure” if Dan’s issue of concentrating more on details than the big picture was related to his OCD.

The best advice I can offer if you find yourself in a similar situation is to know your rights. Read up on the ADA and stand firm. Support, as well as documentation in writing, from a therapist or psychiatrist (preferably your own), can be invaluable. While college is typically a time of reduced parental involvement, I am convinced that if my husband and I hadn’t joined in Dan’s fight, the outcome would not have been in his favor. We had to bring our son’s case all the way to the president of his college, but he ultimately got what he deserved: fair treatment.

Because Dan’s OCD wasn’t diagnosed until he was seventeen (and because we homeschooled), our family never dealt with the need for accommodations during the K-12 school years. Again it’s important to know your rights and options. Laws and plans are in place, particularly for schools that receive federal funding (this includes all public schools). Beyond OCD’s site, OCD Education Station, is an excellent resource, not only for this information, but for all concerns about dealing with OCD in school. Again, there are still many school professionals who do not understand OCD, and this is just one of the many reasons why parents need to be well prepared to advocate for their child.

Whether you’re sending your child off to kindergarten or college, this exciting time can also be stressful.  Add obsessive-compulsive disorder to the equation and chances are you’re also adding an extra layer of anxiety. That’s understandable. I do think, however, that it’s important for parents to remain positive and convey an air of confidence that everything will work out just fine. Because it probably will. But if problems do arise, we need to let our children know, no matter what their age is, that we will be there to support them, advocate for them, and love them every step of the way as they navigate their educational journey.

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19 Responses to Back to School with OCD

  1. This is such an important topic. Blake has mostly had teachers who are willing to accommodate as appropriate and then there have been others who refuse to believe that OCD is anything but an excuse. On the flip side, I’ve encountered a number of parents and kids in my practice who don’t want the school to know about their OCD. They’d rather struggle than face the potential “embarrassment” of people knowing they have OCD. Most of these kids in this situation are especially good at hiding their OCD. The ones who aren’t as good at hiding it are much more open about seeking support from the school.
    Thank you for a valuable piece!

  2. Thanks for your insight, Angie. I do realize there are those who prefer to hide their OCD, and that is certainly their right. I just find it sad that people feel they need to do that (and in some cases, justifiably so), thereby having to suffer with little to no support from the school. Imagine a family feeling they need to hide their child’s asthma or other physical illness? We still have such a long way to go in dealing with the stigma of brain disorders (I prefer brain disorders to mental illness :)).

  3. Thank you for writing this, Janet. When I was in school, I was hiding my OCD from everyone. Certainly I never would have told my teachers about it. And the ADA wasn’t in place during most of my school years. That said, it’s good for everyone to be reminded that now we do have rights against discrimination. I’m so thankful that students and parents have a way to fight for reasonable accommodations, for ways to make adjustments that don’t give people with OCD an edge–it gives them a fighting chance.

    • Thanks for commenting, Tina. I do think it’s “better” to have OCD now compared to when we were younger, but we still have such a long way to go. I hope in the not too distant future, things will get even better.

  4. Lisa says:

    I have a 24 year old daughter that has been suffering from OCD for the past 10 years. things have gotten really bad at times. she has been to therapy in the past but does not want to go back. She can’t even work. I appreciate any suggestions.

    • Hi Lisa, I’m sorry things have been so rough for your daughter and you. I’m not sure if she lives at home with you, but if she does, maybe it would be a good idea for you to meet with a therapist who specializes in treating OCD to learn how to best support your daughter without enabling her. Believe me I know this is a tough situation and there are no easy answers. You say she’s had therapy in the past and I’m wondering if it was ERP Therapy and if she considered it successful?………I wish you all the best as you continue this journey with your daughter.

  5. wackyadorablefamily says:

    People can be ignorant. One of the employees at my son’s college accessibility office actually suggested he drop half his classes! Oh, well, he has a disability so that’s the obvious solution right? Without any conversation about the types of assistance they could offer or even asking if he would have any problem! Of course he won’t be doing that.

    • Thanks for sharing, wacky (may I call you wacky 🙂 )? I agree that what you are dealing with is ignorance, plain and simple. I think, for the most part people mean well, but they just don’t have a good understanding of what OCD really is and is not. That needs to change. Thanks for your contribution.

      • wackyadorablefamily says:

        Of course! to be honest my son has other mental and developmental disabilities but the point is that the people hired for these positions don’t have the knowledge and experience to do the job. Anyone who sells our kids short is just not qualified to work in accessibility.

  6. C says:

    I think this is such an important topic, especially for college professors because (I think) the second wave of when OCD manifests happens in those late teenage years/very early twenties. One time, I had a professor tell me maybe her class “just wasn’t my thing” because I was struggling reading the assignments (reading each word three times), writing, bringing paper to class, etc…little did she know! You try doing that and see how well you do in class, Dr. Johnson! I think if professors/educators were asked to go through some sort of class or educational seminar about common disorders, it would not only help them, but also the OCD sufferer. I recently told one of my former professors with whom I am still close about my ocd, and she referred to her son “having it too” because he liked sheets to be lined up on his bed. I think she was trying to make me feel better, but the knowledge of this beast really needs to be spread among professors.

    I feel so strongly about this, I was entertaining the thought of writing an “about ocd/what to look for/how to help” letter asking my alma mater to educate and spread awareness in this way. Since starting college is so stressful for some and the age is perfect for when many people develop ocd and ocd is often found in very bright minds, I think it would be invaluable.

    I was one of those who was very secretive about my ocd in school–I never even told my roommates or close professors–just one friend in all four years one month before I graduated.

    • Wow, C, that must have been torture for you, keeping your OCD hidden in college. I can’t even begin to imagine! I totally agree with everything you say. Because when you get right down to it, I believe ignorance is at the root of most of these issues with college professionals. Please keep me posted if you move forward with it!

  7. Vijay says:

    I have a 28 year old daughter whose OCD was diagnosed 3 years ago. She has been to half a dozen different OCD specialists and tried ERP for over 2 years to no avail. For the past 2 months she is undergoing neurofeedback therapy but it is still early to say whether it is going to have a positive effect or not. Any suggestions on handling it will be highly helpful. She is working on her PhD in mathematics and the OCD unfortunately has a strong negative effect on her work and studies. Thanks

  8. Keith F says:

    Great post Janet! Another issue that the complexity of OCD confuses is finding a psychiatrist who has seen enough OCD to fully understand how it manifests in all its forms versus one who has seen a few OCD patients. It is a big issue that has not yet been addressed.
    Keith F

    • Thanks for your thoughts, Keith. I agree that OCD is complicated for health care providers as well as sufferers. Dan saw four different psychiatrists and they all prescribed different meds, saying it was trial-and-error. Some seemed to know more about OCD than others. In my son’s experience, CBT (specifically ERP) was what helped, and therapists, not psychiatrists, are the go-to people for this treatment. I agree with you, however, that the people who you’d expect to know a lot about the disorder sometimes don’t!

  9. The Hook says:

    Heartfelt (As always.)
    I’m done.
    Thank you.

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