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

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.

The…BEACH!

beachviewforwritingoctober132014_nToday is Monday, October 13, 2014 and this is my view as I write on this beautiful fall afternoon.  Monday is my writing day.  Today is no different.

Last month I created a two-day self retreat at my parents new, empty home located just 45 minutes from my house. It was the first time in over 5 1/2 years that I had gone away over night away from my youngest child.  I went to recharge my batteries as well as to write. It was wonderful.  While I was there, I planned this trip to the beach.  I vividly recall dancing around my parents empty living room shouting, “The… BEACH!”

It’s been 3 years since I have been to the beach. It has been 3 years since my family has gone to the beach. We have a time share and haven’t used it in three years. We were long overdue for a trip to the beach. We live just three and a half hours from Myrtle Beach.  I originally thought it would be a two or three night trip until I started playing with dates on the Bluegreen website. My oldest, Harrison,  was supposed to be on a boy scout backpacking hike from Friday through Monday and he would have classes on Thursday. So when I scheduled a trip for Sunday through Friday, I thought we would need to take two vehicles.  Somehow the stars aligned in the universe and my son’s trip got changed to ending on Sunday.  He talked to his English teacher about missing class because they had a paper due in class that day and was told by the teacher,”Dude, go to the beach”.

A new friend, that I found on an international unschooling list and who happens to  live just  2 neighborhoods away from me, set up a gluten and dairy free meal exchange with five families.  My wonderful husband had the idea to save all the meals for this beach trip.  We also made pancakes, three kinds of muffins, egg salad, potato salad, and chicken salad.  We thought Harrison would be back from his trip between 3 and 5 pm Sunday and so we arranged to drive the hour to the state park to pick him up to get him home as soon as possible to get on the road.  Saturday night, he sent me a text and told me they were changing the hike plan for Sunday and would be finished between 11 and noon.  No need to drive the hour to pick him up.  He arrived back at the scout house at noon and my husband was there shortly after to pick him up.  We finished our packing and headed out at 4:15 pm.

It was a long three and a half hour drive. Maybe because we left during the day while it was raining and then the sun set and it was dark when we arrived.  It just felt like an all day drive. Could have been because I have been eagerly awaiting a return trip to the beach ever since we went home three years ago.

We arrived at 7:50pm and I went in the lobby to check in quickly because my daughter was eager to get to the room to watch Once Upon a Time, which airs at 8pm on Sunday night. We made it up to our room at 7:57pm. I took the foil wrapped fish and veggies prepared by one of my friends from our gluten and dairy free meal exchange.  Despit sitting in a cooler for over three hours, they were very frozen after 40 minutes in the oven.  In my family, over hungry people makes for much tension and chaos.   I decided to go with my two boys for a night walk on the beach while we waited for the food to cook.  They wanted to go and my daughter wanted to stay back.

We went down the elevator and crossed the street. This resort has two buildings, one on the beach and one across the street.  Because I booked just one month in advance, there were no room available at the beach front building.  We took the pathway that leads to the beach acess and entered the beach in the dark.  My 5 year old was nervous at first as we stood on the beach in the dark, the waves rolling onto the sand.  I took his hand and we waked to the water.  It didn’t take long and we were allowing the waves to splash us as we moved in and out of the water laughing.  He was 2 1/2 years old the last time we came to the beach.  He says he remembers some of it.  It is wonderful to be five years old and on the beach.  It is wonderful to be the mother of a five year old and be able to take him to the beach.

We took a walk, looked at shells and got our shorts splashed with sea water.  My oldest took pictures of us and the beach with my iphone until my husband texted my phone to tell us, “dinner is ready”.

This morning I took my daughter and went for a power walk on the beach at 9am.  I walked fast with my music and she took her time behind me and periodically, I would turn back to walk slowly with her for a while.  I got my exercise and some time on the beach with my daughter.  The last time we were at the beach, her enjoyment of the beach was intermingled with the torment of her anxiety disorder.

We then all went to the beach together.  It was cloudy for the first hour or so and then the sun began to peek through the clouds. I was sitting in a beach chair when it made a valiant effort to shine through the heavy clouds and so I did a sun chant and within minutes, the clouds were clearing away to reveal the carolina blue sky.   A sunny warm fall day on North Myrtle Beach with my family…all my dreams had come true.

Last year, my oldest made me a card for my birthday with a drawing of the beach including me standing on the beach as well as the whole family with a note stating that even though we didn’t get to go to the beach this year, he hoped my card could be a substitute.  It was like my own vision card.  I hung it up on the wall behind my lap top desk in our kitchen.  I envisioned myself at the beach on my birthday for nearly a year.

My birthday is in two days.  I planned this trip to be here on my birthday, something we did 4 years ago.  And it just so happened to coincide with my oldest child’s  fall break at community college where he takes classes as part of a dual enrollment program.  And the stars aligned so that we didn’t need to come in two cars but all 5 of us are getting to enjoy 5 nights at a beach resort.  I get to sit with a beach view and write.

Life is good.

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.

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.

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.

 

I HAVE JUST SO MUCH TO BE THANKFUL FOR IN MY LIFE!

I-  Italian-  I am grateful for my mother helping my daughter and her cousin learn Italian with weekly Skype chats

 

H-  Harrison- for my first born child, for his persistence, patience and perseverance

A- Abby- for my daughter, her gentle, loving spirit and all she teaches me

V- Vacations- for our time share and trips to the beach and family time on Lake Murray and weddings in St. Louis

E- ellen- the ellen show brings humor and laughter into my living room and my home

 

J- Jason- for his  jumping joyful spirit and for reminding me of how much fun there is to have in all of life

U- Uncles- for my uncles,  and how they have impacted my life and others

S- Sister-for Michele and her generous energetic self who brings so much into the lives of my children and many

T- Teachers- those special teachers who encouraged, inspired and respected me

 

S- Sunshine- living where the sun shines bright  and getting outside  to recharge my body and soul

O- Octagons- this shape has a special place in my heart- it forever embodies my first born’s early years

M- Music-Billy Joel, Billy Jonas, Queen, David Wilcox, electronic pianos, maracas,  pots and pans… and more!

U- Unschooling- discovering this way of life for my family and all those who have influenced me

C- Children- all the children in my life:past, present and future; they remind me what is really important

H- Hubby, Don- my best friend, love of my life,  who  brings out the best in me

 

T- Today- I can recreate myself each day in the next grandest version of the greatest vision ever held about myself

O- Oliphint, Jenny- an amazing person, dance teacher and great inspiration in my daughter’s life

B- Brother- for Darrin and his quiet, calm, adventurous way of living and willingness to travel to SC twice each year

E-  Employment-all the places I have worked, job flexibility and the wonderful people at my current job and all the people who have come been in my life from all the places I have worked

 

T- Thanksmas-our wonderful self-created tradition, celebrating many things all in one long weekend

H-Health-healthy people, healthy way of living and beating hearts!

A- Aunts- Again, many and all with unique gifts and blessings which have enriched the lives of many

N- Nettles- nourishing me and my family into healing and good health

K- Keifer- water keifer grains, for all their goodness and for those who brought them into my life

F- Food- many wonderful tastes, textures and especially those delectable items that nourish my body

U- Up-looking up;  can only go up from here;  up and coming; up, up, and away!

L- Life-for each and every day of life and for giving birth to three amazing children, each birth a unique experience

 

F- Felines, especially Lassie and Thumper who have a special place in my heart; and Peanut, the book club bonus

O- Olive, the wonderful dog who came into our lives and our home

R- Radish- the one thing that grew well in my garden this year

 

I- iPhone-music, Facebook, email, pictures, camera, video, GPS, calendar, games and phone all in the palm of my hand

N- Nieces and Nephews- now there is a varied crew from age 9 to age 42!

 

M- My Parents- for bringing me into the world and all they have done for me in my life

Y- Yesterday- all the memories of my life and the stories from those who came before me

 

L- LOVE- Love is all there is, and there is nothing else

I- Imagination- boxes, paper, crayons, scissors and glue; Imaginon, a wonderful place;   and the song “Imagine”

F- Family- being blessed with grandparents and great grandparents for so many years of my life

E- Everything else, all of life’s experiences that  educate and enrich my life

I have been part of an on-line journaling community and here is this week’s writing prompt:

“There’s a wonderful quote that says when we die, it doesn’t matter how many things we have in our possession; what matters most is the differences we made in the life of a child.  There is so much wisdom and power in this statement.  Imagine if we lived our lives with only this intention?  To make a positive difference in the life of a child.  All of our fears, inadequacies, and self-doubt would disappear.”

And then….

“This week, write about the most important things you would teach a child.  Even if you’re already a parent or grandparent or great grandparent – start from a blank slate.  What are the most important lessons you would teach him or her?  Why are they important?  Do these lessons move us towards peace, love and joy?  Speak from your heart.”

  • I see a big difference in these two paragraphs:
  • “To make a difference in the life of a child”
  • “start from a blank slate– What are the most important lessons you would teach (a child)”

Children are not blank slates. Even if that was not what was intended by this statement, I think it implies that we must teach children everything.  I disagree with this idea.  Yes, we do “teach” children. We teach them all the time in our actions.  They learn from watching us.  Just like they learn to crawl and to walk and talk, they learn how to act and respond based on what they observe.  We need to be the change that we want to see in our children.  Not in a “hey look at me, I am doing it this way and so should you” form of  modeling but in our everyday words and actions.

I see this all the time just by watching my children.  With three children, I see how the youngest, who is 3 years old, copies the actions of his older brother and sister as well as how the older children copy each other as well as me and my husband.

When I think about “making a difference” in the life of a child, I think of stopping and listening to a child. I think about loving a child, meeting his needsjoining her in her world, spending time with him, connecting with her, being there for him.

My mind goes to the birth of my children and all my choices prior to their birth,  during and after.  I recall how I began to really think about what I was putting into my body and how my diet evolved and changed over time -which has been good for my health too!  My birthing choices, the classes I took and how much I learned after my first was born and the changes I made for my second child’s birth as well the changes I made for  my third child”s birth.  My decision to breastfeed my baby and attending La Leche League meetings and learning more and more about nursing my child and mothering.  Learning about attachment parenting and child-led weaning.  For me, these are very powerful ways I have made a difference for my children’s lives.

Here I am, almost 15 years after I gave birth to my first child remembering those early days.  How can I continue to make a difference?

I read books, educate myself and reach out to like-minded communities to connectshare information, resources and support. It doesn’t matter how long we have been a parent, it is a continual learning process.  I can improve my communication skills and modify my “parenting method” as I grow and evolve as a mother.  Our children are all unique and have their own strengths, weaknesses, gifts and talents.  I see my role as nurturing, supporting, empowering, and maybe at times guiding them.

But even as a homeschooling parent, I do not feel I am here  to “teach them”.   I believe that my children have far more to teach me than I could possibly teach them.  

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