sharing my life experiences, reflections and insights as a mother, a writer, an Occupational Therapist and and a spiritual being having a human experience

Archive for the ‘OCD’ Category

A Day in the Life of a family touched by OCD

I wrote this post over 3 years ago. I never published it.  I am going to share it as I wrote it. It feels unfinished at the end and that is exactly how our life felt at that time.  I am happy to say that Abby is now functioning like a typical 14 year old for the most part, or at least like a typical unschooled 14 year old. She has overcome so much and come so far in 3 years.  Whenever I stop and think about this, I feel speechless,breathless,  amazed at how she has overcome such a severe disability. And then I breath out as reality brings me back to my current life, because we are now going through similar issues with our youngest child.  Somehow, my husband and I have two children with OCD.  We both feel compelled to help others who suffer, Don, with his coaching business, and me with my writing. We know how isolating having a child with OCD, or any mental illness can be, and we want others to know, you are not alone, there is help.  Don has recently written an ebook on OCD. His website

 

I woke up this morning and my little one was still asleep.  I checked my phone and saw my husband’s text:  “Left at 6:50, she was still sleeping”.  I stayed put checking email and facebook on my phone until my youngest woke up at 9:30.

We then headed downstairs to check on my daughter, Abby, asleep on the couch.

She said she had been up for a while but was curled up and calm.  (Thank God!)

I went in the kitchen and got her supplements and a new glass of water and a fresh straw.

I brought them to her and gave her the supplements one at a time, dropping them into her mouth and waiting for her to  reach her body across to the table where her cup sat and drink from the straw.

I then started breakfast.  I heated up pancakes for the kids as I started some hot water.  I got pancakes ready for my 4 year old.  He wanted a special cup for his juice and so I told him to get out the one he wanted which he did.  I then started sausages and then brought my daughter’s plate of pancakes, with syrup and cut and the box of spoons to her in the living room where she sits watching TV.  I set down her plate and opened the box of plastic spoons, moving the lid out of the way for her to reach in and take one.  I pointed out how many spoons were left and reminded her that we will not be buying another box of spoons.

I went back to the kitchen and started my breakfast, cut up apple, and quinoa and got it cooking on the stove and used hot water to make myself tea.  Jason was done eating now and so I got his vitamins out.

The sausage was done and my daughter was now in the bathroom.  I called up to her but she said she was too full for sausage.  I put them away in a container and labeled it “Abby” and then I put on some other sausages that she doesn’t like but Jason and I will eat.

Then she called me upstairs to help her wash her hands.  I pumped soap into her hands and then turned on the faucet, waited for her to finish, and then turned faucet off for her and went back downstairs to kitchen to finish making my breakfast.

Jason managed to play by himself and things were relatively calm.  It’s easier when only two kids are home.  My oldest had spent the night at a friend’s house.  And my husband had an all day workshop and wouldn’t get home until after 6pm.

I managed to eat, and make a batch of nettles (I soak dried nettle leaves in hot water to make an infusion which we then let cool and freeze in ice cube trays to use daily in smoothies and to drink.  Nettles are full of minerals and great for allergy relief.)

Keep in mind that my 4 year old talks almost continuously and comes in frequently to tell me or show me something or requests me to come see what he is doing.  Abby and Jason managed to play together briefly but it ended because Abby made too many rules and Jason came to me crying.  He desperately misses playing with his sister but it is not easy to play with her because he can not touch her or her spot on the couch and she does make a lot of rules when they play.  Abby tried to negotiate with him asking him which rules he didn’t like, but Jason was done.

By now it was about 10 am and so I reminded Abby that she was supposed to be Skyping with her cousin at 12.  Her cousin lives in PA and about 2 times each week they chat on skype or Google Chat.  They are working on a story together and building a house for the imaginary family on Google- Auto Desk Homestyler.

I ask her if she has a towel to use after she showers and clothes to wear.  I go to the kitchen to finish cleaning up, unloading the dishwasher etc.  She finally decides she needs to wash clothes and her towel as well as sheets.  she goes upstairs to get her clothes and comes down, “Mom, I need you to open the washer”.

“Just a minute”  and then I head down and open the washer, she drops clothes in and I tell her to get more and then I start the washer and add the soap.  She brings a few more items down and her towel but tells me she can only wash the clothes she is going to wear today.  And I tell her she needs to wash more because I can not wash clothes for her every day.  She gets mad and huffs off.

 

Dealing and Coping with Mental Illness

One of my biggest challenges in helping my children with their mental health issues, has been doing so while dealing with my own mental health issues.  I have diagnosed myself with Bipolar 2 because the mental health professionals have failed me in that area. They diagnosed me with Major Depression despite my repeated information on my bipolar symptoms. One practioner wanted me to see if my insurance would cover generic testing, in part to see if Bipolar disorder was likely. I don’t need to take a test for that. My brother is diagnosed with Bipolar 2 and has been for a long time. My brother and I share much other genetic similarities. 

I have found in helping my children, that I have been more qualified than the so-called professionals with diagnosing myself and my children. Especially my youngest child who I know has OCD and social anxiety despite failed attempts with professionals to get these diagnoses. I am a health care professional after all and hey, who knows my children better than me? No one. I homeschool/ unschool them based on my knowledge of who they are so I guess we unschool mental health too. 

That being said, we do use professionals for assistance. We have a OCD specialist therapist who has been vital in helping both my daughter and my son.  But we have been unable as of this writing to find a well qualified Psychiatrist who specializes in OCD.  We had one that was competent and who we liked (we liked her even more after we went to other Psychiatrists) but she was self pay only and we already have enough debt from medical expenses. 

Back to my intent of this post….

Helping my children when I myself am suffering my own mental illness. 

When I look back over the years, there are large periods of time that feel like a fog and in those times, just getting through each day was a big challenge for me.  One area that has been a big issues is getting my children help or following through with referrals and other things when they are doing better. 

When your child suffers with mental illness, it is exhausting, emotionally and often physically. When, they are doing better, there is a feeling of relief and wanting life to “just be normal for a while” or more normal.  As an example of this, last spring, my youngest had a severe flare up of OCD, anxiety and behavioral issues.  We went to a hospital ER to get immediate psychiatric help but because he was less than 7, we could only seek a referral to a developmental and behavioral pediatrician or go to the local mental health behavioral unit which would have been at least a 3-5 hour wait without knowing if they could even help us. We opted for the getting referred to the pediatrician specialist which involved going back to our primary for the referral and then I called to follow up but did not receive any information from them for 6 months.  I repeat, it took the Develpomental and behavioral Pediatrician practice, 6 months to send us information in the mail to complete to be seen.  Well, 6 months later, he was doing so much better. We had started OT services as well as going to the therapist we already had for our daughter. I intended to fil out the paperwork.  I must add that about 4 months prior to this visit to the ER, we had taken him to a psychologist for evaluation, but she was unable to complete her evaluation due to his inability to answer all her questions and complete her tests. It took her a couple months to send her results to us which said nothing really that I did not already know. 

Back to the referral to the pediatrician specialist.  I truly intended to fill out this lengthy paperwork to get my son seen.  I even contacted a friend who had taught him in a class situation to help with filling out some of the information. Since we homeschool, we don’t have a teacher to answer things.  He also acts differently with me than with other people, so I thought her input would be helpful. She is also the person who first pointed out the idea that he has “social anxiety”.  Yet, I have yet to begin to complete this paperwork. Now, I want to get my daughter referred to this practice in my hopes that they will have experience with OCD, particularly child-onset OCD. Because, she needs a prescribing doctor to follow her on her medication. Our previous Psychiatrist, who we did not like at all, does not take our current insurance. 

So why did I not fill out the paperwork for my son when they finally send it to me, 6 months after I requested the referral?

The only answer I really have is: my own depression and anxiety. 

My own depression made doing daily activities difficulty and anything extra was really a stretch for me to complete. I just did not have the time nor the energy to do it. I wanted to do it. It bothered me that I did not complete it. I also think that I did not have much faith anymore that these so called “professionals” could help my son.  Having the experience of taking my time to go to the psychologist assessment and gaining nothing from the experience other than frustration with the incompetence of the psychologist with knowing how to handle a kid with severe anxiety and getting help for us, I had little motivation to pursue this next avenue of help.  

So was it my depression and Axiety that prevented me from getting the help for my son?  

Or was it because I no longer believed that the professionals could help my son?

Most likely a little of both. 

I took some steps today to get my children the help they need.  Despite the utterly inadequate NC government health care system, I soldiered on with 2 different phone calls and even talking to the person who is my “case manager” who I find particularly incompetent and unprofessional.    I know know that I need to do research to find a psychiatrist that takes our current insurance, NC assisted: NC Healthchoscie for Children (when your income is too high for Medicaid). They had Medicaid until the beginning of this year. My husband is self employed and my prn work status does not qualify me for health insurance through my employers. I work 2 jobs. 

I also plan to find that paperwork and fill it out for my son too. Hopefully, I can find it, buried in the piles of paper at my desk. And I do plan to ask my friend to help me fill out the information. She now has seen my son at least weekly in class and might have some valuable insights and opinions to share. 

So this is my affirmation to myself to make these items a priority. 

If you also deal with mental health issues and have other family members with mental health issues, I would love to hear your challenges, thoughts and insights.   Let us help each other. 

Cuatro De Mayo: Celebration of 5 years of Rebirth

On Wednesday, May 4, 2011, my 51-year-old husband suffered a massive heart attack in our home, coming in from moving the lawn with a weird pain in his upper back on the right side which later traveled up his neck and around his ear.  His RIGHT arm was cold and clammy. Despite, my years of CPR training required for my work as an Occupational Therapist, it took me a while to realize that this was indeed a heart attack. His symptoms were atypical. It is usually the left arm and later, the doctor told him, “you had a heart attack like a woman”.

I remember searching in the basement for my bag from when I worked in home health care- over 5 years earlier- for my stethoscope and cuff.  I remember his pulse was faint and slow. Looking back, I don’t know why it took me so long to call 911.  Don had no idea he was having a heart attack.   I finally called 911 and frantically searched for aspirin that I knew we didn’t have when the 911 operator asked if we had any aspirin.

About 5 minutes after the medic arrived, Don went into full cardiac arrest.  It looked like he had a seizure and he became unconscious.  I remember the other medics arriving just as this happened and remember them rushing us out of the living room where we all had been standing and watching as Don went into full cardiac arrest.  I recall walking the children around the corner into the kitchen and sitting on the steps and I began tapping (EFT).  Looking back, I believe the only way I was able to do this was that Don’s spirit was alongside me.

I could hear the medics and understood everything they were saying.  I listened intently to them as I made an effort to comfort my kids.  They used the defibrillator and I could hear them say,“he has a pulse but it is faint”.  If memory serves me right, they used the defibrillator 3 times while he was in the living room before they moved him out to the ambulance to get him to the hospital.  He was in ventricular tachycardia when they left and his face was dark blue. 

 I am forever grateful to the Robinson’s Volunteer Fire Dept. and that medic who stayed with me and asked me, “Do you have someone you can call?”  

My mind went blank. Who should I call?  He asked about family or friends.  I had many friends but tried to think of someone who lived close.  I then though of Lia who lived only about 10 minutes from me and called her and her mom took a message which she quickly got to Lia.  Lia arrived quickly and drove me and the kids to the hospital.  The medic offered to follow me to the hospital, but I knew I needed someone else to drive.  And then Lia could stay with the kids.  As I type this 5 years later, I can picture it like a movie in my mind.  I remember Lia’s calmness and her suggestion to drop me off at the emergency room entrance and then she went to park the car with the kids.  I vividly remember walking into the hospital and asking to find a bathroom first!  I wrote a post on that one.  Then I came out and asked where he was.  I remember standing just outside a small room/ ER area and the doctor telling Don, “you had a heart attack” Don was awake but did not see me and gave the doctor a crazy look when she told him he had a heart attack.  They told me they were bringing him to the cath lab.That all seamed to happen in less than a minute.  They rushed him upstairs and I never got to say anything to him.  He has no memory of that experience.

The next 2- 3 hours were the longest hours of my life. They first brought me to the cath lab floor to a very small room to wait.  I told them that my friend would be coming up with my three kids and was there somewhere bigger we could wait.  They then brough me to the cardiac cath waiting room which was empty due to it being after 6pm.  The nurse or someone had told me it would be about 2 hours and when that time passed, I started to panic.  And Lia, with her calm sense of problem solving called the front desk, or maybe she suggested I do that,finding the number for me and later we learned, that they did not realize we were waiting there because usually after hours, they have family wait in one of those small rooms like they first brought me to.

We watched Idol as we waited because that is what we would have been doing at home. We had been watching American Idol as a family for a few years. Abby needed the distraction.  We ate peanut butter crackers from the vending machine for dinner.  Lia had lots of change on her.  She really was my angel throughout this experience and I don’t know how I would have done it without her. 

You can follow the rest of the story below. 

I will now share a post I started sometime after he returned home from the hospital. This post  was dated December of 2011 before I updated it.   It is a post that I started, but never finished nor shared.  I am sharing it now as we celebrate: Cuatro De Mayo, Don’s 5th anniversary of rebirth. 

I began journaling through the experience of my husband, Don’s  heart attack through Facebook posts.

I began the posts as a way to quickly update family and friends about Don.   I later realized that the posts could also serve as journal entries for my “in the moment” feelings and thoughts.

So now, just over 12 weeks later, I am looking back on my Facebook posts and will share them here.

Note: It has been nearly 5 years since Don had his heart attack.  I started this post copying all my posts from May 4 through May 10 including a blog I wrote.  Now I want to add the remaining posts for May 11- 16 to include  all the days he was in the hospital. But I have to figure out how to do that! So until I do, I will share it as it is.

This is a chronological listing of my Facebook posts. When I first did this, I went back and even included my comments in reply to other people posting to me. I left the posts “as is”including mispellings.  I added some things for clarification in parenthesis.   I also have a few times summarized a post like a conversation with Harrison that we had on Facebook. When Don had a heart attack May 4, 2011, Harrison was 13, Abby was 9 and Jason was 2.

May 4     8:56pm    

please pray for Don. he had a heart attack and is the hospital at Presby Main. all here right now. he’s in cath lab..talked to nurse waiting to hear from doctor.

May 4     10:10pm

Don is stable. waiting to go see him

May 5     4:23am

don is doing better but still in CCU and will be there several days. I Got to see him Ad talk to him and then we came home.kids did not (see him). just called to check on him. he’s improving. will know more later . going back to hospital soon. thanks for everybodys prayers. keep praying

May 5 at 7:29am

here with Don. he’s improving. in CCU all today. he can eat now. feeling some relief

May 5 at 9:07am

Thank God for 911 and the medics with Mint Hill and the other station. and the Cardiologist and nurses and team here at Presby. so glad I live in a big city. and all my friends and family and being here talking with Don and knowing he is improving.

reply to a comment:  Thanks Michele. Holding up ok. He is talking and eating and joking. Still in Cardiac care unit for t least a day or two and then to step down unit.May 5 at 10:38am ·

May 5 at 3:36pm

trying to figure when to go to hospital again and dinner for my family (with all our food issues)

reply to comments and friends offer to bring food:

You guys are awesome. I know Leslie mentioned shopping. There are things at Trader hoes (Joes) we need. We can eat some wheat but we have been eating gluten free and my biggest concern is Abby and not changing what she has been eating too drastically. She has been gluten and egg free and the other big thing with her is no preservatives and artificial colors…
Rice and potatoes and vegetables. Potatoes of all kinds…fruit is great for H and J. They eat a lot of fruit! And we do eat Ezekial Bread…found at most stores in frozen foods.

And Abby loves meat. Yet with her OCD /abxiety issues I am not sure what she will eat that others have made. She still has not been able to eat out.
I am so happy for meals right now cause I an not sure how I an getting through this other than this is far better than the alternative.May 6 at 4:44am ·

I am trying to ask for help (not easy for me) cause the other thing I may need…and right now I have my parents here til sat and then my sister in law comes in Fri – today thru Tuesday. Will be help with day to day at home…cleaning up…for those that k ow me, housework is not my thing. I love doing laundry but other than that…
I an trying to think ahead cause I know it will be great with my family…my sister in law is a nurse but she lives in St. Louis and so when she leaves…is likely to be about when Don comes home and right now that idea overwhelms me.
I am taking it one day at a time. I an just trying to reach out because that is not something I do well. And ask for help when I feel strong enough to ask for help (cause asking for help aibt easy fir me!)….but man am I learning fast!May 6 at 4:50am

May 5 at 6:18pm

back with Don at hospital. he continues to improve.

May 5 at 9:28pm

a picture of Abby and Olive- Olive in Abby’s ballet skirt

May 5 at 10:50pm

loves my family and friends. don – I love you. healthy healing heart ..tap tap tap

reply to the comments:     Thanks everyone! You know I love prayers in every form and every religious or non perspective! And healing energy and all of it…its all energy I think its all helping. In so many ways its amazing he is still here and improving.May 6 at 4:53am

May 6 at 5:08am

I would like to post a picture of my mother and also one of Don and I….can’t seam to find many pictures other than of my children…May 14 is Don and my 17th So glad my honey is still here with me….just trying to do what I need after a good 5 hour rest , while everyone sleeps… My new mantra”the past is behind me… only look and move forward”

May 6 at 5:14am

Dancing with my love at a family wedding Abby about a year asleep in my arms.

(changed my profile picture to this picture of Don and I dancing at a wedding with Abby asleep in my arms)

May 6 at 5:47am

one more source of help could be friends coming to be with kids in waiting room while I an with Don. we are going to hospital later

May 6 at 12:13pm

whoever can help me buy meeting me at hospital to be with the kids in waiting room while I am with Don. call me

May 6 at 5:24pm

thank you Lonna and everyone! anyone who can meet me at waiting room to hang with the kids over the next few days

May 6 at 10:51pm

having a good night after a rough day..fatigue hit me today. sister in law angel arrived. Lonna angel met us at hospital…talked to more friends. dons improving. hoping to sleep more tonight. Needs: taking trash to dump. strong person to lift battery so we can put lawnmover away

reply to comments:  Rough day for me. but Don is doing well…improving well.May 6 at 10:56pm

later reply to comments:  Thank you all. forgive my impersonal reply. FB and my BB are helping me through. I did sleep a good stretch. The adreneline high I was on, has ended to some extent although when I wake up, I figure I need to get out of bed and do something cause I will likely not fall back to sleep quickly. and need food and waterMay 7 at 4:43am

one more:  plan to go back to lay down in a bitMay 7 at 4:43am

May 7 at 4:41am

Slept about 11:30 til 3:30 woke with some bizarre violent dream. Called hospital, don is doing well and sleeping Yea! and he relieved his bloated feeling earlier (you know I work in health care and so I may come across weird with what I post).
The Presby nurses are awesome and answer all my questions cause I need to know as much detail as possible having an anatomy background and all.
J ust wish I could be at hospital 24/7 but it feels good to be home and be here for my kids too. We are all sleeping in my room and have gotten all to bed within 30 minutes or so once we are up there. Feels good to have them close.

reply to comments:   “Thanks Kamilla he is doing well and improving yet it will be a slow recovery and he has another artery with blockage that they have to reasses and in one month check for permanent heart damage. (figure you may understand some of this being a nurse). Getting lots of great help right now.May 8 at 9:55am ·”

May 7 at 5:00am

I need to get real organized real fast. has any one heard about or had experience with Inclusive Health.org? I was told it was a state program to get insurance for anyone. we have a major medical plan covers hospitalization at 80% but no follow up coverage and no coverage for cardiac rehab insurance agent told me to contact them and they will cover anyone.

May 7 at 5:20am

went to inclusivehealth.org NC sponsered company for coverage. went to find a local agent and list is very long for Mecklenburg County…anyone have any experience, know of anyone who has used them or an agent?

May 7 at 6:22am

found a rep in Mint Hill, sent a message. Feels good to be getting some of these things done. more sleep later in day. food and drink got rid of headache, time talking with my Dad. guess time to shower while everyone is still sleeping. plan to go to hospital by myself today once Jason is up and settled. going to let him sleep as long as he needs after two difficult early mornings. breath…..

comments:   Don should get PT today and I really want to be there when they come byMay 7 at 6:22am

comments:  “the past is behind me, keep moving forward”

May 7 at 6:22am

May 7 at 1:34pm

got to spend time alone with my honey. he got to sit up in a chair and walk to toilet. he is progressing well. he got sleepy and needs rest.

reply to comments:  “We appreciate all the prayers and well wishes and I a. Happy to let everyone know how he’s doing. Don’t mind people asking either.May 7 at 2:23pm”

reply:  “Thank you. He had stints put in right away. We won’t know if he needs more for a few months. He has to recover before they can even see how much damage was done to heart…that will be a good month before they can check that.May 7 at 11:09pm”

May 7 at 4:09pm

home with my family…my parents left. have my wonderful sister in law here. my house has. never been so clean and we have clean laundry! kids have had playmates. will go back to see don. he did sleep some

reply to comments:  “Thanks Joyce. Helps to hear that. Happy Mothers Day to you. We have lots of positive thinking going on. He lived and that is all that matters right now…he survived that..we can get through anything. Best mothers day gift ever…my husband alive and doing well.May 8 at 9:53am

-May 7 at 4:51pm Harrison uploaded a photo of Don and I (more recent photo) because I wanted it for my profile picture

May 7 at 11:12pm

we all went to see Don tonight and he was feeling much better and had slept and got to sit in a chair and visit with us. it felt wonderful. kids made him pictures. we love you Don-daddy!

May 7 at 11:20pm

I have the best mothers day gift ever…my husband is Alive and improving and I get to go spend time with him early tomorrow. challenges bring perspective …I am so grateful

Inquiry about if Don is  still in same room-

My reply:  “Yes but he may be moving today in morning don’t know when. But will move to cardiac step down unit. He apprecited you coming and is ok with visitors…he wants the distraction. Just short stay esp if he seams sleepy. He has not slept much. He slept best yesterday and was doing real well last night for our family visit.May 8 at 2:50am”

May 8 at 3:14am

just talked to Dons best nurse…Sharon we love you! and I am feeling relief. I can bring him any foods. she will get social work consult for us. she understood what probiotics are. Ahh……and she was there when the other nurse looked at me H and J and said “no children under 12 allowed”- and let us in. Daddy needs to see his kids and they him…its part of what is healing him along wirh modern medicine!

comments:  “don’t anybody tell me Don can’t see his kids! I understand the hospital policy but love trumps policy. I Will keep j in my arms in hall. Just one more day of CCU then that won’t be such an issue.May 8 at 3:17am”

Comments:  “Its just hard with all we are going through to wallk on the unit with the kids and have everyone look at you with that “why are those kids on this unit?” and I just want to shout. We are visiting their Dad! You don’t know what they saw at home with the medics….they need to see him and he needs to see them. Its part of our healing…Dons included!!!!!!!! Modern medicine is wonderful and so is love!!!!!!!!!!!!!!!!May 8 at 3:19am”

comments:  ” Its these little things that are tough on me right now. Seeing my needs more and. More as I am out of SURVIVE mode and now am moving on to other emotions and boy is it a roller coaster. But I got through him almost leaving us…I can get through anything now.May 8 at 3:22am”

May 8 at 4:13am

Sat May 14 is our 17th anniversary. I am so glad my honey is here with me! He was last in the hospital 17 years ago on our honey moon, ask us about that funny story. I love him so much.

comments:  I had a conversation with Harrison about cropping the picture for my profile picture and then about how Jason is doing.  my final comment back to him:   “Thanks. I can likely come home before he needs a nap and then come back over here. But while he is happy I will take some quiet time and be close to Dad. But will likely come home sooner rather than later for his nap…so I can nap too and then we can come back or at least I can or Ann can or something.May 8 at 9:00am”

May 8 at 4:23am

Happy Mothers DAy to my wonderful Mom! It was so helpful having you here when I needed you most. I wish I could find a picture of you to post as my profile, when I scan my pictures, all I find is the kids….:)
You are the best mom and the reason I am the mother than I am.
I love you Mom.

May 8 at 4:42am

I have started blogging about this because I know I have to and need to. And I don’t need to hide my writing but share it for anyone who wants to read it.

ginaslifejourney.wordpress.com

Perspective. Having your 51 year old healthy husband have a sudden heart attack and go in to cardiac arrest in your living room with 2 kids, age 2, 9 and 13 standing by (and thank God, the medics who had gotten there before he arrested) is a life altering experience to say the least.   …
Ahh…..talked to Dr. Iwoka. he is moving to step down today. things are going well. I like him for more than just saving the love of my love and best friend.

my reply to comments:   ” Thanks Adael! Happy Mothers Day to you. This was the most I got to talk with the doctor and watch him assess Don. Our nurse told us he was rated the Best Cardiologist. Helps to hear that. And I like how he answered my questions. It eases my mind.May 8 at 8:57am”

May 8 at 9:43am

Happy Mothers Day to all the mothers and those who act as caregivers and mothering roles….including my sister…the best big sister anyone could have

my comment:  “And my husband is included in this”

May 8 at 9:47am

*converstaion with Harrison about how Jason is doing and me waiting for them to move Don

May 8 at 10:03am

hanging in waiting area while Don tries to sleep..looking out window thinking ..one nurse told us CCU used to be labor and delivery and likely was 131/2 years ago when Harrison was born. he may have been born very near where Don is on CCU…has a spiritual kind of comforting feeling to me in a weird and maybe silly way….

May 8 at 10:10am

was able to peek in window and not click door…Don is sleeping so I am letting him rest. think ill take a walk and get my jacket in the car…its freezing in here!

May 8 at 11:14am

Jody posts a picture:

Princes Harrison and Jason with their crowns

May 8 at 12:05pm

Dad in his new room (picture)

May 8 at 12:26pm

Don is moved to Step down. things are good. great nurse here. think I will head home for a bit. this is a big step! yea!

May 8 at 2:04pm

and sometimes I need to cry and let it all out….I guess the whole thing is just beginning to sink in or are moving out of a state of shock…and over tired….I know all will be well but its ok too to say this really sucks

reply to comments:  “Yes tears are good…a release of energy and I an glad they are coming.May 8 at 4:12pm”

and another reply:  “Love all the hugs and thoughts…helps me outMay 9 at 12:33pm”

May 8 at 4:13pm

slept well and feel refreshed…boy I needed that. Ann and h and J<supposed to say A> going to see Don. me and J going soon yet cool to be home with just my J

May 8 at 7:32pm

don doing great! love his new nurses on 3D. going home for dinner with my family -1. don needs rest.

May 8 at 7:57pm

thinking about tomorrow and play mates for jason …

May 8 at 8:34pm

need to spend lots of time at hositsl next two days as Don may come home tuesdsy and I need to tslk to nurses.

May 9 at 4:41am

Out of shock and on to next stage. still counting all my blessings yet nervous about next steps of this endeavor.

didn’t get to finish my post…3D nursing staff is awesome! Presby hospital has been awesome. Feels good knowing he is in good hands there. He might be getting PT today! Eager to get to hospital and be there all dayMay 9 at 4:43am

May 9 at 5:17am

I am thankful for prolactin 🙂

May 9 at 8:18am

Don is tired today and has low grade fever. he sent me message but it wears him out to do so. can’t wait to go over to see him. kids are all still sleeping here as I BB next. to them…we are all in one room together.

May 9 at 12:39pm

at hospital with Don. he is resting but doing as expected. fever is not a concern. he will be going to cath lab tomorrow t0 have other blocked artery stinted. then will come back to room he is in now. it is about an hour procedure according to nurse (and Much easier this time since it is not an emergency)

May 9 at 5:01pm

home now. don is tired but doing well. we don’t know what time he will go to cath lab in the morning. 7am or later so I will be there by then. mom is coming back later tomorrow. got a friend who can come early and stay the day. I will be good to have the stint done to open the othwr artery and know that is behind us yet is a new venture to process and think about.

May 10 at 1:19am

got some sleep. my 3 angels are sleeping all next to me which feels so good. Ann visited Don tonight and he is doing well yet very tired. procedure sometime today…7am or later. ill be there and Will keep ya’ll posted. (I can’t believe I just wrote ya’ll…I must be a southerner now…been here 18 1/2 years!)

May 10 at 2:17am

Blogging again about this experience.

ginaslifejourney.wordpress.com

I sleep maybe 2 or 3 hours and then lay there with so many things going through my mind so I get up to get something done because there are many things to do.   …
reply to comments:  “Thank you. It means so much and I know all the energy and prayers are helping as much as modern medicine is. There are miracles happening every day all around me and I feel so blessed.May 10 at 2:40am”

This is part of an email I sent to a friend on May 9, 2011, just 5 days after my husband had a heart attack.  I have added some additional information in<> to clarify the message but otherwise kept the message as I typed it to my friend because I feel it shows the emotion I was feeling so early on in this experience.

“I think I was in shock for several days when this happened.  We had no idea he had issues other than his family history but he is the youngest of 6 siblings. We eat so healthy and he exercises…etc etc.  I don’t know how I got through him arresting in our home, thank god the medic was already here when he did and then waiting in the hospital for over 2 hours with my friend and kids, when we should have been home watching American Idol, and wondering if the doctor would come out and tell me he was dead.  I watch too many ER type shows, Gray’s Anatomy.  I didn’t even cry that first 24 hours or until I was driving back to CCU the next morning alone.
It is a relief to say these things.  I have great support in many ways but to be able to talk about this esp with someone who gets my parenting style , has good communication skills :)and with someone who has been there helps me a lot.  I know I need to call you.  Right now we are all nervous about him coming home. We want him home but after our traumatic 911 experience, <I’m nervous about him coming home to our family which includes>  my 9-year-old with OCD and my 13-year-old (his own much milder anxiety issues) and me.  I picture myself standing over him checking his vital signs every 30 minutes.  I am thankful I am and OT and feel fine with understanding his rehab, but the medical stuff scares the crap out of me.  I have to reassure my kids esp my daughter that we will have all the instructions we need from the hospital about signs to watch for but inside I am terrified.  I wish I could be with him 24/ 7 right now while he is in the hospital but feel safe   especially now that he is out of CCU with where he is .
ahh…wow…I do need to talk about this…and for me writing is even easier than talking…thus my blog  but I also need to call you and have someone who can really listen “

Quicksand

Today in my son’s science club class, a monthly class held at our local homeschool co-op, we did kitchen science activities.  One activity included mixing corn starch  with water at a ratio of about 10 to 1.  As the corn starch is mixed with the water, it becomes more and more difficult to mix it.  When you put your fingers into the final product, it feels solid, yet as you pull your fingers out, two things happen, the solid become more liquid and it also feels like it is sucking you in, like quick sand.

I have  been sitting here for over 2 hours, searching the web in an effort to find a topic to write about.  I then came to the conclusion that I needed to write about being “stuck”.  Because for the past month or so, I have felt stuck. Stuck with life and my efforts to write.  I have started over 4 blog posts in the past month that have been left unfinished.  I have also found myself dreading my weekly writing time.  That has been a tough thought for me to swallow.  As a busy mom of three kids who also works outside the home on average 20 hours per week including weekends, writing has always been my outlet and escape.

So here I am with time alone to myself in a favorite coffee shop. My husband is taking care of the kids.  I haven’t even had an interrupting phone calls or texts about issues at home.  Yet, I am left feeling blank.  And so as I wrote out the word stuck in the tile, I then came to the body of the post and the first thing that came to mind was quicksand.

That feeling of being pulled in and every effort to pull myself up and out, leaves me more exhausted and more swallowed in my lost feelings.  I feel this in particular as it relates to my youngest child.  He has shown signs of anxiety for nearly his entire life.  Yet, these signs have become more pronounced over the past six months.  A year ago, he was begging me to participate in classes like his older siblings have done.  I remember picking my daughter up from her bimonthly girl scout meeting during which time she would want to talk the entire ride home about her experiences in girl scouts that day.  My younger son would become mad with her talking and demand that he talk too.  Later it became apparent to me that he too wanted to participate in activities like his sister.  I found the information for our local nature center which provides preschool age nature classes centered around a story and nature walk.  We attended several of these classes. I remember the first day of class. My son, who was 4 at the time, was disappointed that the class did not involve writing things in a notebook.  Ironic coming from a child growing up in an unschooling family.

I think the vast age difference between him and his siblings, his sister is 7 years older than him and his brother is 11 years older, has added to his sense of being left out.  OVer the summer, I learned that our homeschool group was starting a monthly co-op.  I was excited and he too was eager to participate in the classes.  We encountered one challenge of him not being old enough for the chess club, something he desperately wanted to participate in.  I contacted the parents who were running the class and had an online discussion with them.  I learned that there 14-year-old son was the one leading the class and because he had never done anything like this before, they felt that 5 was just too young for the class.  I understood and yet also was aggravated by the age limit.  My reasons for homeschooling when my oldest was 5 had very much to do with age related learning.  My oldest learned to read and write before being of kindergarten age and thus school would not have been a good academic fit for him.  Here I was 12 years later dealing with this issues with my youngest in the homeschool community.

Four months have past and we have attended the monthly co-op with my youngest participating in 1oam science club and 11 am art class.  There were more kids in science than art but yet he had more issues with art class and would not even go in the room today.  He participated in the activity the first three weeks.  So much for the idea of him becoming more comfortable with being around other people.  His social anxiety seems to have grown worse over these past 4 months rather than diminish as I had hoped.  We have known some of the individuals in the co-op for a long time.  Both parents in his classes were extremely respectful of his desire to be off by himself and did not push him in any area.  They were very accommodating to us both as I attended the classes with him and was the one to participate in the past two months science activities.  Again, as I look back, I see his participation lessened in science class as well as art over the 4 weeks.

What is a parent to do?

I grappled with this issue for some time and with the help of a close friend who also has children with anxiety issues, finally made the phone calls necessary to schedule my son for a psychological assessment.  I also took him to a well visit which I had not done for some time due to his anxiety around new people.  He refused the hearing test after tolerating the headphones on his head for less than a minute, refusing to raise his hand when he heard a beep and then pulled the headphones off.  HE then refused to take his clothes off to wear the gown for his check up.  I knew the nurse practitioner at the clinic from taking my two older children and was really impressed with how well she handled his anxiety and refusal.  I was not impressed with how I handled the experience.  I am usually my son’s biggest champion for respecting his space and need to do things at his own pace but sitting there in the doctor’s office, I wanted him to comply and follow the rules.  Maybe this is more a testament to my own issues with authority and rule following and may have very little to do with my son.  I know I have fears of looking like a “bad parent” because of my children’s behavior.

The more I pushed my son to comply with the required taking off of his clothes in order to be examined by the doctor, the more he dug in his heels and resisted.  Like stepping in quick sand, I found myself becoming more stuck, not knowing what to do and then realizing I had pushed too far became angry. I sank further into the quicksand.  The nurse practitioner managed to listen to his heart and lungs and look in his ears and eyes and even his throat.  Thank goodness she remained very calm.  And we talked at the end of my upcoming appointment for a psychology assessment that would not be until February because that was the first available appointment.  I can still see the look on her face when I said “February”.  A few days later, I got a call stating there was an opening at the clinic later this month. unfortunately on a day and time that would not work for me.  There are two appointment times at the clinic, 8:45 am and 1pm.  In order for us to successfully arrive at the clinic, I knew we needed an afternoon appointment.  My son needs warm up time in the morning.  The assessment is a 3-4 hour process and I want us to at least have the chance to take our time in the morning and not be in a rush to get out of the house.  I need that so I can remain calm.  Taking him to  the psychologist feels less threatening to me than to the well visit appointment.  Maybe because I know that the psychologists are educated and trained in working with children with psychological issues.  And I trust that they can be objective and calm in the face of my son’s defiance and resistance.  Yet, I also know without the presence of other children or a noisy environment, some of his issues will not be apparent.

While I wait for his appointment, 2 months away, I find myself sinking further in the quicksand of worry and self-doubt.  No matter how many times that I read that parents do not cause their children’s mental illness, there is a perpetual thought that lingers in my mind that somehow this is my fault.  I do have the luxury of blaming my son’s anxiety on early child-hood trauma including his sister’s sudden behavior outbursts and personality change when she was 8 and he was merely 1-year-old.  The onset of her severe OCD and the resulting years of struggles within our family and between my daughter and us, her parents as well navigated the process of finding help for her.  On top of that, at age 2, my son witnessed his father going into cardiac arrest in our living room and the subsequent trauma of me being gone for 10- 15 hours each day over the next 12 days while he was in the hospital.  And to top things of, the following year, when he was 3, I was in a car accident and he and his father came to meet me in the emergency room.  I went home that same day, but suffered much physical and psychological pain for many months with lingering post traumatic driving anxiety.

Maybe I need to step back in this time and assume a role of observer rather than trying to change his behavior.  I know that some regular routines have helped him with bedtime rituals as well as morning wake ups.  We have  also found removing some foods to have helped some extreme behavior for the most part.  And taking an amino acid supplement along with magnesium, thing his sister has been taking for years, also seem to help make our days manageable.  I am very attached to my son, this child whom I waited to bring into the world until my husband had full-time salaried employment allowing me to be at home full-time for the first time in my 10 years of parenting. Yet, my husband’s loss of this steady job when I was 3 months pregnant, sent me back to work.  I resisted returning to work after he was born for a year because I wanted that experience of being home with my child full-time, something that I had only for weeks with my older two.  He is also very attached to me and me alone which has presented  many challenges with his father watching him as I have gone to work over the past 4 1/2 years.

Somehow, I need to take a deep breath and step back.  I need to accept my son and the struggles he currently has.  I also need to acknowledge that his issues do not have to define him.  I resisted for many months, almost a year with labelling my daughter’s issues.  This time, I know that a label can help us to know the path to receiving help and helping him to understand what he is going through.  This is particularly true when  child sufferers with OCD.  It is important to help the child to see the OCD as separate from himself.  Personifying the OCD helps a child to see it for what it is and can help him to overcome the challenges that OCD creates.  You would think my experience of having traveled the journey with my daughter, would help me to deal more effectively with my son’s issues.  I know there things that I can handle much better this time around and yet, maybe my awareness also creates more dread of what lies ahead.  But I must stop myself from projecting into the future and catastrophizing his current issues.

Overcoming OCD: Helping My Daughter Get Her Life Back: part three, week 2

Read the early two entries to follow the story….http://wp.me/p12VUh-aR

Week 2:  Continuing to sit in the car

I was home again on Monday  and Abby continued to sit in the car, but no seat belt on yet as it is a source of large anxiety (over 10 on the scale of 1-10).  We would talk about the next step and have her think about touching the seat belt or us touching it as well as have her look at it.  We also just spent time in the seat doing something fun, like me reading a story she was writing outloud.  The goal being to make sitting in the car a positive easy experience for her.

Monday, Tuesday, Wednesday, Thursday and Friday

She did not move past sitting in the car onto any other steps other than allowing her younger brother to sit in his seat next to her. This was stressful to her at first and he only stayed in the car for part of the time.   My husband and I began talking about what we needed to do if she would not progress to a next step.  Something we had done a week ago when she was refusing to participate.  We had even come up with a drastic plan to not allow her on the computer until she completed a step.  Yet, this was her primary way of engaging in life and after many weeks, months really of her not being able to touch her computer unless she went though a long- weeks long washing process but would then not be able to touch it again after bumping something.  And so it felt drastic.  We also could not agree as I did not want to take Skyping with her cousin away because it truly was the most valuable part of her life right now and the most real part of her life.

And reading my last entry when I wrote how Abby decided to touch her dog after seeing her cousin hugging her dog- over the internet, only reaffirmed my belief that we must keep this precious time on the computer with her cousin intact.

Sunday, the new  miracle day

I worked on Saturday but Sunday I only had to go in for 2 hours.  I decided to take Jason to the swimming pool that afternoon.   We both said outloud that we wished ABby could come with us as she loves to swim.

Abby was having an really bad time because we had told her that I had spoken to my brother about her skyping at first with her cousin in the car so her cousing could help motivate her to take steps to putting her seat belt on and being able to go places in the car.   This is something Don and I had talked about and I had spent a lot of time talking to my brother who agreed with me that his daughter could be very supportive for Abby as she wasn’t likely to pitty Abby, something ABby did not want and could remain calm and objective and also help her as they have a shared interest in seeing each other in July- just a month away at the Kids Dog Camp run by my sister (their aunt).   Abby was mad about this idea and did not like it at all.  She was upset and crying when we left.

Jason and I enjoyed swimming and then I checked my messages before we headed home at 4:45 when the pool closed.   I got a text that Abby was in the car with her seat belt on.

What?

Really- did she put it on herself?

Before I could get an answer, he told me that she had given him a big hug!   I told this to Jason who got very excited.  He has been a big cheer leader for his sister and so excited over the progress she has been making.

I get goose bumps remembering this.  She spontaneously hugged her dad.  I later learned that he was on the phone with a company getting information on ordering a part for our stove and she just came up and hugged him.  He had to tell the woman on the phone to hold on a minute.

I was never so glad to be going home (other than last Saturday) but this time with the potential of a hug from my daughter.  My last memory of hugging her being in January when she was in a fit of panic and fear late at night after her worst episode of rage and severe depression. The night we almost had the ambulance take her to the psychiatric emergency room.  A very sad yet touching memory of my last hug from my now 11 year  old daughter.  A girl who just 5 or 6 months ago was sleeping in a bed next to mine and always a snugly, hugging,and loving child had not been able to hug anyone in her family for months.

The best hug ever

We got home from the pool and Abby and Don were outside in the car, showing me that she could sit and put her seat belt on.     I changed and  approached Abby about a hug.  I got the biggest, strongest embrace ever and it felt so good to hold her.  I  didn’t want to let go.  Would I be able to hug her like this again?  With OCD, you never know, she might be able to do something one day but not the next.  Now I know what I can picture in my mind when things are challenging with her, I will just recall that wonderful long awaited hug.  I am sealing it into my memory now as I write this and remember vividly the wonderful hug.

The week continues

Today she awoke very happy and enjoyed time with her younger brother. She asked me about going out to the car.   She agreed for her brother to come with us and we all buckled in the car.  We talked about the next steps. She decided bringing Olvie in the car was the next step and also she did not want to rush this process.  I was eager to work towards me sitting in the driver’s seat while she was in her seat but this is another area of great stress to her.  As I write and reread what I am writing, I believe that is Abby’s higher self talking about not rushing it.   We are eager but we can breath and take some time as long as she continues each day.

Monday, I often get time to myself.  Something I have found a necessity for some time in order for me to refuel and engage in writing and my areas of interest.  As an introvert with two very energetic children and a teenager with intense needs, I find it not only helpful but mandatory for me to go out of the house alone and to have time where all I need to worry about is my own needs in the moment.   I am not an extreme introvert and so I am often at a coffee house or a restaurant with WiFi with my lap top.  On occasion, I have gone to a move by myself, a treat I would never had enjoyed prior to having kids.  Today, I pushed myself out of my comfort zone to head somewhere outside my usual path.  I went somewhere I had been many times before but never by myself.  And here I am 6 hours later, still here and having now written two blog entries in addition to working on other things.

Tomorrow will be another day and I will be home with my children and continuing to help Abby to fight her OCD, to push out of her comfort zone and to gain control of her life again so that she can really live her life again.

Overcoming OCD: Helping My Daughter Get Her Life Back…part 2 (week one)

Please read the prior post to follow the story.

Overcoming OCD: Helping My Daughter Get Her Life Back

 The Start of the Plan-  Week One

Following the Plan of Taking Steps to Abby Getting in the Car

Day two

I fed Abby her breakfast as usual and gave her the medicine and supplements that she takes. I reviewed the plan for her to begin her steps or we would not accommodate.  She ate and then disappeared in the basement on the computer.  She skipped lunch and intermittently, I would ask her if she would like to go out and do the step, reminding her that the first step only involved standing with the car door open and looking into the car where she sits.  She continued to refuse.

She came to me about 5 and said that she was hungry.

I calmly stated, “How about we go outside?”

She agreed and “only because she wanted to be able to take a bath the next day.

There is quite a ritual to her hour bath (OCD means of her cleaning herself of “contaminants”) and then shower immediately following with help pouring shampoo, conditioner,and soap- and in that order.

We walked out to the car and I opened the back door.  We talked about her touching the floor with her foot and I asked her what number (anxiety scale of 1-10) would it be for her to do so as well as to sit down or touch the seat.    She told me she had no anxiety looking at the seat but everything else was a 10, very high level of anxiety, to even think about them.  We remained outside for about 15 minutes.

Day three:

The next day, she agreed to do the step outside with the car after she ate breakfast.  I will add that we also have been doing some exercises to help reintegrate her fear reflex. Exercises given to us by a Movement Specialist who assessed Abby and worked with her for a time on the exercises, until Abby began to refuse to participate.  Outside of Abby’s OCD, she can be very stubborn and so that combined with the OCD is a challenging combination.

Day three went well with her putting her foot up onto the floor inside the car and we talked some more.

Day four: Absolute resistance

Need I say more?

I went to work on this day.  I work part time- prn hours meaning it changes all the time, some weeks I don’t work at all and others I work anywhere from 3-25 hours.

So she was home with her Dad and she refused to do anything with him.  He did not accomodate her in getting the food for her in the way OCD wants us to.  She somehow found a way to get the box of forks from the kitchen closet with her foot and open it with her feet and take out a fork to eat.  He made her food and put it on the table as we would for our other children.  I think she did the same to get a straw out of the cabinet above the kitchen counter.  She is only about 4 1/2 feet tall!   I think he told me she stood on a step stool.

Day five: resistance continues

Again, I was at work in the morning like I was the day before and again she continued as she had and refusing to go out to the car with her dad.

Day six:

This was Saturday.  I am now working full days on Saturdays.  I was at work from before 8am until almost 6pm this day.  I got updates from my husband via text.

She had refused in the morning and then was on the computer Skyping with her cousin, soemthing she does at least weekly.  Her cousin who is a year and half younger than her and lives 600  miles away have been skyping once or twice each week for over a year. They are best friends.  And throughout this entire crazy experience of her OCD and especially over the past 4 months with the worst of her OCD, time on the computer with her cousin is the only thing she has looked forward to and made an effort to participate in- or wanted to participate in.

After her time on the computer, she agreed to work with her dad and go out to the car.

I wish I had saved all the texts to share here.  He told me, “our daughter is sitting in the car”

I couldn’t believe it!  Wow- so that was the next step- we didn’t imagine that would come next.

And then he told me that she wanted to touch Olive, our dog, with her hands, something she had not done in over 4 months.  She told us she saw her cousin hugging her dog when they chatted on Skype (or it might have been Google Chat- they have done both).  Thank goodness for long distance visual communication!

The next message I got was something like this…

“she is hugging Olive on the floor and can’t get enough of Olive and Jason (her 4 year old brother)”

And he sent me a picture of her sitting on the floor, hugging Olive.

I felt like I was going to cry!  It was about 4 or 5 pm and I was entering information on the computer to finish up at work.   I have recieved many phone calls and text messages at work over the past 3+ years and many urgent ones, frantic phone calls from Abby demanding I come home now and reports from my husband on how difficult the day was going.  Early on, more than three years ago, I had to leave work to meet my husband and kids at Walmart to help calm my daughter down who was in a rage in the store.  Something very unusual for her as she usually hides the OCD in public.  This was very early in her diagnosis when she was 8 and before gluten was out of her diet.

Back to Abby sitting on the floor and hugging Olive…

It sounds simple, but this was huge!  She allowed her dad and brother to pet Olive and she continued to pet Olive.  Usually, us touching the dog would have made the dog “contaminated” according to OCD and then Abby would not be able to touch Olive again.

I came home from work that night and Abby told me that she was going to continue to pet Olive and not stop.  She even said later that night that she was having anxiety about petting Olive but she was going to face it.  Wow!  Yes, she said that.

She then sat down in a kitchen chair for dinner!  Again, hadn’t done this in a long time and before she had her own chair that only she could sit in or it needed cleaning before she sat in it. I did explain that  this OCD was complicated with many rituals and false beliefs, right? Yet writing it all out now, makes me realize this even more myself or at least see it from a new perspective.

Day seven:

I worked a half day on Sunday.  She was unable to do many of the things she did the day before. OCD has a way of flaring up when she faces it and defies its rules.  We have seen this before after she has overcome many things and made several big steps at once.  Yet, this seams to be how Abby moved forward: several giant steps forward and then a big step back.

We were not surprised yet my husband was frustrated.  He is very linear and it is easy to get caught up in the need to make steady progress forward.  Yet, we have both learned this is part of the process.  Trusting the process and trusting Abby to move forward in her way is a challenge.  Despite many reminders about this, it continues to challenge us.  I am grateful to others who write about their OCD and parents of kids with OCD who write about it like OCD talk which helps me better understand and continue on this path of helping my daughter in her recovery.

Overcoming OCD: Helping My Daughter Get Her Life Back

Today is Monday, May 20, 2013.

Today we told our daughter, Abby, our new plan for overcoming her OCD, Obsessive Compulsive Disorder.  We had found a new therapist who we first met with in her office, just my husband and I and then she came to our home 4 times in 2 weeks.  The therapist told us we needed to have “leverage” in order for Abby to work on the therapy to face her fears in order to move forward in her life and do the many things that she has not been able to do for several months.  She spelled out some options yet the focus was on her working on steps and if she refuses to do so, then we do not accommodate her in the ways we have been doing.

Accommodate- what does that mean?

That is what Abby asked today when I laid out the plan. It means that her OCD is about irrational fears she has and because of these fears she has compulsions to do or not do things.  Her fears have encompassed all aspects of her life to the point that she can not touch anything that we touch.  She will not touch any glasses, plates, bowls or any of our silverware.  We bring her food to her and give her a straw and open a box of plastic utensils and she carefully removes her spoon or fork in order to eat her food.  If she is going to eat a sandwich, or anything with her hands, she wants us to prepare it without touching it with our hands, in other words, use a fork or tongs.   And there is more….

But WHY- Why on earth would we do all these things for her and feed into her fears?

As simple as that question sounds and as simple as this may appear from the outside, the complexity of living with a child who has such extreme fear that she goes into fits of rage that include threatening to hurt herself and others.  I do not mean the typical teen or preteen response to parents where a child is mad at his parents and says something to the affect of ,  “I hate you.  I wish you were not my parents.”

I don’t know that I can even describe the nature of this experience and the extend of her fear and anxiety.   Somewhere I read that having OCD is like having someone holding a gun to your back….all the time.  And so the experience that Abby had when her OCD flared up, I would describe as her standing on a cliff with someone holding a gun to her back.  We were there calling out to her but the screams of the fears were so loud that she could not really here us, but we were a mere blur in the distance.  At times, she was able to see and her us and therefore able to turn into her true self but the rest of the time, she merely numbed the pain with distraction.  Her biggest distraction, watching TV.

After our last appointment with the therapist last week, my husband and i have been talking and making a plan.  We canceled our next appointment with the therapist because although we respect her experience as a therapist treating kids with OCD, she was  not making a connection with our daughter.  The therapist agreed to canceling the appointment so we could talk and make a plan.  I needed to take what made sense based on our experiences and all we have read about OCD from the books we have read, the blogs and the forum I have been on hearing from other parents whose kids have OCD.  I needed to take it all in, process it and apply it to our parenting style and in a way that worked for us in our belief system.  I knew we had to implement this plan without threats or punishment or us adding fears other than the pressure of her needing to choose between doing the steps to overcome her fears or living with us not accommodating her- not accommodating OCD.   OCD creates rules and the more we follow them, the stronger the OCD becomes and the more challenging it is to overcome it.

My husband, Don, and I made a list of all we do and all we avoid in order to accommodate her OCD fears.   WE made a list of steps to take in order to address one of her fears, getting into the car in order to go somewhere.  We then made a list of guidelines  based on all the therapist had told us, for the steps to be taken.  We typed all the parts up and discussed them together before we presented them to Abby today.  We first presented her the steps to overcoming the fear of riding in the car which is something we have talked about before and even tried working on.  It was also what was discussed last week when her therapist was here but she was unable to participate in helping us determine the steps.

How do you take steps to getting into a car?

Abby has not gone anywhere in the car since January 31, 2103.  It has been nearly 4 months.  She has looked at the car and has sat in my husband”s car- but only as a way to get my husband to wash his hands because of his interaction with our neighbor.

I guess I need to back up….

To the best of our understanding…. Abby’s current fear revolves around touching anything that was touched directly or indirectly by someone who smoked or by an unknown person that could have smoked.  There is a chain of contamination involved in her fear in that if someone else touches something and then we touch that something, then we  are contaminated   And so, her family and the majority of our home is “contaminated” according to her OCD belief system.

We have not hugged our daughter in months!

We can give her a quick kiss on the lips, sometimes but no pats on the head, no hugs, no holding her hand….

The last time I remember holding her, was on the absolute worst night when we called 911 to take her to the psychiatric emergency room because she was trying to hurt herself and in such a place of rage that we felt it was beyond our control and far worse than similar episodes she had had over the past month.  We felt it was our only option and knew we could not put her into the car.  After my husband made the call and as the arrived outside, Abby made a sudden switch from a place of total rage to a place of complete fear.  She was in tears and a complete panic state begging us not to let them take her away.  I could not possibly describe the extend of her fear but I took her in my arms and began rocking back and forth as we sat on the floor.   I knew I could not send her off in the ambulance because I did not feel that doing so would help her.  I knew all along the nature of emergency psychiatric care and the likely procedures that would ensue and knowing there was no impatient OCD program here in our city to help her, I had always doubted the effectiveness of this method.

Does any of this make sense?

As I write all of this down, as I type these words to describe this experience on my computer, I wonder about the path we have taken.  Yet, I know I have seen my daughter become herself again.  She agreed to see a Psychiatrist, one we found with the recommendations of doctors we trust.  And she began to take mediation and since that time, she has found a way to do many things with her feet.  We can touch her feet and she can pet her dog with her feet, use the computer, draw and paint- yes- WITH HER FEET!   She has played with toys and build structures with kinetics and blocks all with her feet.

The past few months have continued to be difficult, but her behavior has been manageable and rarely has she had fits of rage and when she has, she has learned to remove herself and has calmed down in shorter periods of time and even apologized to us after the fact- and by that I mean, she has come down from her room on her own and came over to us and has chosen to say, “I am sorry”.

I believe her medicine, an SSRI, the prescribed medication for OCD, as well as the various supplements that she takes and her gluten- free, egg- free, primarily citrus free but nutrient rich diet are all helping her. Yet, she has a long way to go.  A long way to go in order to return to participating in the activities she loves, dance classes, girl scouts, getting together with friends, being able to attend kids dog camp this summer with her cousin- something that has been planned for a year- and seeing her family and possibly attending a family reunion, also an event that has been planned for more than a year.

Today, we went over the steps, the rules and the things we will not accomodate should she refuse to participate in the steps.  We asked for her input on the steps because the idea is to start with something that brings the least amount of anxiety. Think about an anxiety scale of 1-10, 10 being the worst- and so each step is progressively more difficult for her. The idea behind this standard treatment plan for anyone with OCD and is called Exposure and  Response Prevention, ERP,  is to expose her to something that brings anxiety and sit with it until the anxiety lessens so she can “retrain” her brain to not trigger a fear response with these activities

She got mad.  No rage, just mad and going on about how this isn’t going to help and she doesn’t know why we are going to make her do something that will not help her.  I let her walk away for a little and then my husband and I went over the plan with her but she might not have fully listened to all the components. She kept saying, she got it- and we didn’t need to explain any more but continued in that it will not work.

We told her we will start tomorrow.  My plan is to feed her breakfast as we have been, give her the medicine and supplements as we have been doing because we see a huge shift in her behavior about an hour or so after she eats and takes med/ supplements   We already spelled out she would begin before going on computer.  And so I hope she will watch TV as she does most days while she eats and for a little while after and then we can bring it up.

Why am I sharing this incredibly private information about my daughter?

I know there are other parents out there with children suffering from OCD, either undiagnosed or diagnosed.

I know they are looking for answers, for support and for reassurance in making decisions to help their child.

I am writing about this because I wish I could read about someone with a similar age child who has gone through similar experiences.    I also know that writing about it will help me and hopefully in the process of that in turn will help my daughter.   If sharing my experience could help even one person, than it is important for me to do so.