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Friday, January 31, 2014

Who's the Boss? Our experience in talking back to OCD...

I had seen signs of OCD in a couple of my kids very early on.  Nothing to extreme, but little hints of it were there.  They didn't like the "silky" way their hands felt after eating greasy chips, or wouldn't pick things up with their hands if they were dirty.  The first time it really knocked the wind out of me was when Josh was 4 years old.  He came running inside to tell me that he had made a picture with chalk for me outside on the sidewalk.  I stepped out my front door to see the picture my son was so proud to show me, but found a heartbreaking reality instead.  I saw a picture drawn with two stick figures holding hands, a Mom and her son.  But that wasn't had a big circle around it and then a big "X" to cross it out.  As I walked down the 30 foot walkway in front of our home I saw the exact same picture drawn over and over, all with a big circle around them and then crossed out. At the end of the sidewalk remained a picture exactly the same as all the others, but it wasn't crossed out.  Josh said to me in his 4 yr old voice, "The other pictures weren't good enough for you, but now there's no more sidewalk, so I like this one."  I took him in my arms and told him how much I loved all the pictures he drew for me, and quickly wiped away my tears before he could see them.   Josh was 3 when his Dad died and he had really struggled with it.  We had been working on therapy, but this was the first moment that I realized we may have a serious problem.

When Josh was in Second grade however, I became a big fan of OCD.  My therapist had told me that a person with OCD will always struggle with different OCD tendencies so if it surfaced in a healthy behavior it was ok to just go with it, unless it became detrimental.  If it is a positive thing for the child then don't worry too much about fixing it.  Well,  Josh became obsessed with a reading challenge at school that the principal gave.  He wanted every child to read 100 hours during the school year.  When Josh started 2nd grade he was a little below grade level.  His OCD took hold of this challenge and I let it go.  He began reading an hour or more every night.  He would ask me to pause his minutes if he needed a bathroom break or a drink.  He was determined to be the first kid in school to finish.  He ended up being the second kid in school to finish and was done with his 100 hours by November.  He told Grandpa one weekend that he couldn't come visit because he needed to read 7 hours over the weekend.  My Dad called and said he was concerned I was expecting too much out of him and that no 2nd grader should have to read that much over a weekend.  I explained that he had the next 6 months to read those 7 hours and it was Josh's deadline...not mine.  After he finished the challenge the next time they tested his reading level he was at a 6th grade reading level.  He is in 8th grade now and continues to test off the charts in reading.  It took him from the bottom of the class to the top.  Thanks to his hard work...and OCD.

Josh won a writing contest a few months after the reading challenge!

The last year however, OCD became my worst enemy.  Jordy, my autistic son struggles with a lot of things.  One of them being severe anxiety and OCD.  He has had a fear since he could talk that the police would come and take him.  He would panic when he heard sirens that they must be coming for him.  He would be fearful that he was breaking laws constantly.  It was something we had dealt with his entire life, so I got very used to telling him that, "Police never take children.  They are here to help us and protect us and if he was lost they would help him find me, but never take him away from me."  It was routine conversation.  Well, in November of 2012 there was an increase in his asking again.  He also started repetitively praying and repenting throughout the day.  It became frequent enough I went in to the school to ask the teacher if he was praying at school as well.  She responded with "To be perfectly honest, I haven't noticed we have had so many problems with "Johnny" (not his real name) this week it has taken all of my focus."  I asked what kind of problems and her response felt like I had been kicked in the stomach.  "Well, he has been so out of control that we have had to have the police come and remove him from the classroom twice.  He was attacking other children and the staff as well."  I couldn't believe it.  During that week I probably told Jordy 100 times that, "Police never take children".  He couldn't communicate what he had been seeing at school that week.  So the trust that Jordy once had in me was gone.  *Police DO take children, they actually come into your classroom and take you away and put handcuffs on you!  So Mom is either lying to me or she is just dumb!* 

We tried to recover the situation, by explaining why they needed to take Johnny, and that they didn't take him to jail.  They just took him to help him calm down and he is still with his family.  Part of the problem was Jordy identified with Johnny.  They went to speech and resource together and had some similar problems.  *What if I am bad like Johnny?*  Johnny was hitting and kicking the women staff members.  *What if I hit or kick a girl, I could go to jail, and then I won't live with Heavenly Father.* 

By February OCD had won.  Jordy's usual techniques of asking me if he was going to jail would no longer soothe his fear of police.  He began asking EVERY girl, or women he saw, "Did I kick you? Did I hit you?" even if he wasn't even near them.  He asked strangers in the grocery store, every visitor that came to our house, everyone at church, every little girl at school, every teacher and staff member at school.  He prayed immediately after asking his questions.  So that is how we lived until we could get into therapy.  He asked his questions, and then prayed,  ALL DAY long, EVERYDAY.

In the first few weeks while waiting I tried to use some of the techniques they use in helping autism behaviors, and that only made it worse.  He began asking if he was holding up his middle finger.  He stopped using his hands and kept them straight and stiff to be sure that he didn't hold up his middle finger.  He added that to his routine questions, "Did I hit you, did I kick you, did I hold up my middle finger, did I say a bad word?"  Those were the only words he used for 3 months.  When he was in the middle of a baseball game he would take his hat off while on second base in between plays and pray.  He would step out of the batter box in between pitches, take off his helmet and pray.  He paced back and forth during class mumbling prayers to himself and asking the other kids his repeated questions.  We took a 5 hour road trip during this time and Jordy literally asked his questions every minute.  The longest time he sat silently was maybe 30 seconds, and when he took those small breaks it was to repent...just in case.  When Jordy was in a situation that he couldn't ask his questions he would have to pray constantly.  He would sit during an hour long church meeting and pray.  He would finish a prayer look up and look around and then he would pray again, the entire service.  He struggled to eat and drink because he didn't want to put up his middle finger.  I remember him trying to get a drink from his cup using his wrists to pick it up and bring it to his mouth.  He didn't want to wave hello to people or write in class because of the fear that his middle finger would flip someone off.  It was completely debilitating in all aspects of his life. It CONSUMED him.

High functioning Autism can be referred to as an "invisible disability" at times.  People don't know right away that there is something affecting your child.  This has it's pro's and con's.  Well, Jordy's invisible disability was no longer invisible.  Everyone that came in contact knew immediately that he was a little boy that was struggling.  The only word I could use to describe what he was going through was SUFFERING.  I can't count the amount of tears I shed over watching him suffer.  He needed therapy, and help fast, and yet it took weeks, even a few months to get into a therapist that could help him start to heal.
This is how he held his hands all the time:(
When you start therapy for OCD this bad it is a very slow and delicate process.  If you push too hard, too fast it can back fire and make the OCD much worse.  With the correct therapy techniques we started making some progress.  Our therapist was awesome, she helped Jordy realize that it was "OCD bossing him around" and he didn't have to listen to it.  We came up with tools for him to use and key words I could say in response to his unending questions.  We made visuals for him to tape to his desk at school so that his aide, or the kids around him could remind him to use his tools when he starting asking them.  It was a group effort for all our family, friends, church members, and the staff at the school.  I will never forget the day that Jordy talked with our Bishop at church.  Jordy came out of his office with a huge smile on his face.  "Look Mom, he gave me a shiny rock and it says REMEMBER on it.  The Bishop told me that every time I think I need to repent he said I can remember that Bishop Peterson said I don't have to repent all the time."  I started bawling and couldn't even get the words out to thank him properly.  When I told our therapist the story, she started to cry as well.

Watching Jordy suffer with OCD was one of the hardest things I have ever had to deal with as a Mother.  It broke my heart everyday.  I remember the first time we drove home from baseball practice and he went the entire 5 minutes without asking me his questions.  Even better was that he told me about all the things they did in practice that day.  I remember thinking, 'this is the first conversation I have had with him in 3 months'.  It felt like a miracle.  We spent several months doing intense therapy for him.  They even considered putting him in a day program for an option, because he was struggling so much at school.  The school Psychologist said it was the worst case of OCD he had ever seen a child deal with.  Therapy started working and Jordy slowly began to boss back OCD.  We went from 2 therapy appointments a week down to one, and eventually every other week.  It was a process that took us over a year.  As we were driving to his last therapy appointment a couple weeks ago he said to me, "Mom, it just feels so good that I don't feel like I have to repent all the time anymore".  Jordy's therapist gave him a certificate to celebrate his hard work at taking control of his life back.  She is also ready for that call if we need her again.

Who's the Boss?  Jordy is the Boss!!!

OCD is so debilitating at times, and yet can be a powerful tool in people's lives as well.  I am grateful that I have more awareness of when OCD is trying to "boss" my kids around and more tools to help them boss it back!

*These are just my experiences, and I know that everyone has a different view of things.  I am not a therapist, just a Mom that is doing her best to navigate through my children's struggles and triumphs.

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  1. Hi Julie! I found your blog through a link on FB a few weeks ago and I am so happy I did. I love your positive attitude. What a loving mom you are! I can just tell by the way you write about your kids, that your goal in life is to be the best mom you can be. Keep blogging because your posts have been so inspirational for me.

  2. Thank you Desiree! That is really nice. I do love my kids so much and that is my goal, so thanks for validating me:) Thanks for the encouraging words as well. I didn't set out to be a this is all new and a little scary. All the support is just awesome!!

  3. I also found your blog through a link on FB. I am a mom to a 6 yr old who was diagnosed with ADHD and OCD at the age of 3 and who was placed on the Autism spectrum in November. Thank you so much for sharing your experiences, testimony, and hope. That is the kind of mom I try to be and it helps to know that others struggle with similar things and still carry on with their faith in tact. Bless you and your family!

    1. Sounds a lot like the process we went through! It's great to connect with other moms! Thanks for your message. Good luck with all you are going through. It is a tough road, but you can get through it!!!

  4. I'm so glad you found a therapist whose work with Jordy was so effective in helping him fight back against the grip of religious scrupulosity. It's a debilitating, little-understood form of OCD, and it can be difficult to find a therapist who is a good "fit" for treating its sufferers.