When my daughter Ivy started manifesting signs of OCD, or Obsessive Compulsive Disorder, in her first few weeks of Kindergarten, I had NO idea the path down the rabbit hole we were about to embark on. It started with trips to her Pediatrician and to the Optometrist looking for answers as to why she was getting off the school bus vomiting. She was having terrible stomach pains and even full blown migraines at night. We could find no medical answers and finally her pediatrician suggested Ivy might have anxiety.
But Ivy didn’t just have anxiety and conventional therapy was making her worse. Her hands and other body parts were raw from washing. She couldn’t stop moving because her fight or flight response was triggered by her anxiety. She literally needed reassurance every 30 seconds that things would be ok… for a year. If it sounds like I am exaggerating, I promise you I am not. Lets not talk about my stress eating that came from this time ok?
This is why I am sharing what I know now. I remember those times googling “compulsive hand washing in a 5 year old” and my heart sinking. We are now on the other side of our rabbit hole and I want to share with you the things I wish I had known then.
1.) Follow your Gut
We saw 3 different therapists during Ivy’s Kindergarten Year. All 3 tried to treat her for anxiety, and each time they told me there was nothing wrong with her… yeap, that’s correct. My vomiting terrified Kid with raw bleeding hands was perfectly fine. How could that be?
Part of Ivy’s OCD is her fear of getting in trouble. She is incredibly intelligent, sweet and enjoys adult interaction. Therefore her therapists and her wonderful Kindergarten teacher completely missed the signs of OCD.
While Ivy appeared to be literally the perfect student, it was killing her. It took everything she had to suppress her compulsions and obsessive thoughts about the other kids getting into trouble in class. This is the reason she would become so violently ill when she stepped off the bus. When she saw me, she would relax and everything she had been repressing all day would release.
Even though to everyone on the outside it seemed I had lucked out with literally the most perfect child ever, I knew my little girl was struggling so hard there was something majorly wrong. Which leads me to…
2.) Finding the Right Therapist is Everything.
We had no improvement after a year of therapy. In fact, it had gotten so bad I was worried my daughter was losing her childhood and would never have a normal life. I had realized by this point that she did have OCD. I was constantly on my laptop after she had gone to bed reading about how having OCD put her at a higher risk for addiction, eating disorders, suicide. It was honestly a bleak time.
Then a chance meeting at the wellness center I own changed everything. One of the Mom’s turned out to be a Therapist who specializes in OCD. Once Ivy started being treated for her OCD first everything changed for us. Treating Ivy for anxiety was only making her OCD worse. OCD thrives on reassurances, until those reassurances don’t mean anything anymore and the thought loop is endless. By facing her OCD through gradual exposure to her triggers and providing her ways to mentally process how to handle them, Ivy is not in a constant state of fear. It comforts her to know we understand and are working on this together.
3) Think Outside The Box
I watched as Ivy’s anxiety and compulsions started ramping back up in August before it was time for her to go back to school. One day I looked at her and said “Baby, would you like to do school at home?”. The look on her face told me all I needed to know. It was instant relief for her.
Her pediatrician told me that homeschooling for anxiety was the worst thing I could do.
However, I think it was the absolute best decision we ever made.
There really wasn’t much the school could do for Ivy. They catered to her a bit by letting her sit in the nurses office when she would tell her teacher she was anxious or by letting her do her homework while the other kids played in centers at the end of the day. This didn’t work. Just the setting itself triggered her. I do not in any way believe in avoiding triggers or exposure, however I knew she was not going to be able to focus on working through her OCD if she was being slammed every day with her biggest trigger… other kids and their behavior.
So we took a mental health year off of school. We unschooled for the most part. Ivy read books, did some online schooling at her own pace, she went to therapy, she did Yoga classes with her favorite yoga instructor Berkleigh. She loves art, so we did a lot of art together and she took classes. About a month in I noticed I was having to reassure her less. She was singing and dancing all of the time. It was like a light had lit up within her. During this time we were able to work on her coping techniques we were learning in therapy together as she needed it through the day. I had my daughter back.
Now she attends classes with other kids several times a week and is doing beautifully. She comes to me with her worries and we talk them through instead of repressing them or using compulsions to cope. She has her sensory items that help redirect her thoughts. When compulsions do arise they tend to be happy ones (like the floss, Lord help me).
4) Don’t Take it Personally
It took a fair amount of time for me to realize my daughter’s OCD wasn’t about me. I am fully aware that sounds awful, but its honest. For the first year we thought it was anxiety. I was literally doing everything I could to preserve their childhood and make it magical. I am that person that goes way overboard with the Elf on the Shelf and Tooth Fairy. We took her to Disney, she lives at the beach with a pool, a white picket fence with awesome swing set. I was doing everything to give her the perfect childhood… and she was still struggling with anxiety. I couldn’t understand then that it wasn’t about me.
“It took a fair amount of time for me to realize my daughter’s OCD wasn’t about me. I am fully aware that sounds awful, but its honest.”
Once the a ha! moment hit and I had this grand realization, it helped solidify Ivy and I as a team working to fight against her OCD. It didn’t matter what kind of parents we were or what her childhood looked like, this was just who she was meant to be. It will feel personal, it will hit you in your heart as a parent… but OCD is not personal. It has nothing to do with anything you’ve done. Just the fact that you are reading this means you are looking for resources to help your child. You Rock, Don’t give into the negativity that OCD tries to spread.
5) It can be Isolating, Find Support anywhere you are able.
We have several friends with Autism who we love and adore. Autism Moms have been in the battle trenches when it comes to finding resources to help their children. I have seen more than one Mom develop an amazing sense of humor and grace when it comes to embracing their role as parent to a child with Autism. Camaraderie forms between Autism Families and there are wonderful support groups locally online. I love that there is such a supportive community for families living with Autism and other sensory Processing Disorders.
I haven’t been able to find that type of support as a parent of an OCD kid. Even my best friend didn’t really understand when I would explain about Ivy’s compulsions or anxiety. Our entire life had been flipped upside down. I couldn’t hold a conversation with another adult for almost 6 months because Ivy needed my undivided attention every 30 seconds. It was exhausting and extremely isolating. After she went to bed at night, I would pour a giant glass of chardonnay and just cry. My husband is amazing with Ivy, but he still struggles with understanding sometimes what it is like to implement what we learn in therapy all day every day.
However now, since being vocal about Ivy’s OCD I have had other moms come forth and relate to me their experiences with childhood anxiety and OCD. I did not have that community, but now I can be a resource to those of you who are where I once was.
I promise you there is hope and you are not alone. Learning about OCD, embracing this stage of parenthood I never expected and loving my kid for exactly who she is has actually brought us closer together as mother and daughter. I hope by writing this I can help give another family the gift of hindsight.