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

Posts tagged ‘Special needs’

Family Road Trip

We left Charlotte at 7am Friday morning.

Four people, suitcases, bags and bags of snacks: gluten free foods, fresh brewed tea sweetened with local honey

Missing a family member, oldest son, home to take care of dogs, attend work and school

Been a long time, four and a half years to be exact, since we traveled to St. Louis

I drove first

Road trip playlist on Spotify

Chai tea with coconut milk, caffeinated chai

When did i become a morning person?

When did I become a morning person who needs her caffeine in the morning to get her day going?


Time to myself


Starting my day

Time with my husband and two younger kids

Seeing my husband with his family, in his element, relaxed, being the jokester among a family of self proclaimed comedians

Eye rolls from my sixteen year old daughter

“That’s how I know I am doing my job”

Nieces and nephews, who are my age, with children, teenagers of their own

I can’t stand to fly

I’m not that naive

I’m just out to find

The better part of me


Nearly 24 years ago, I married my husband and became a Grothoff

I joined this family

Three new brother-in-laws and four sister-in-laws

Eleven nieces and nephews, from age 8 through age through age 23


Twenty-four years later… age 32 through age 47, with children of their own

Sixteen great nieces and nephews, if I counted correctly….

Playing with Andrew, age 18 months

Feels like a hundred years since I had a toddler of my own

My youngest is nine…

“9 going on 40” as his aunt said yesterday

Speaking up

Speaking up for my child

Speaking up for my child with social anxiety


Allowing him to go off and be alone

Overwhelmed by all these people he does not know

He was four years old when he was last here in St. Louis

He was four years old when he met most of these relatives

That was half his life ago…

It was a house full

They were not all here, several live in Texas and some could not come

Nineteen people, not including us…

Only five other kids, two of them being teens


Large families

I grew up with a large extended family

My mother being one of seven children and my father was one of six living siblings

We visited New Jersey at least once each year

So many aunts and uncles and cousins,

Great aunts and uncles… my parents cousins…


Many people

I was the quiet one

Close to mom as a young child

Or hanging with my sister as I got older

Loud family

Difficulty to get a word in edgewise with all the animated extroverts

Fun family


Creating memories for my own children

Establishing bonds

Building a sense of comfort with being around this family that lives 756 miles away

Three days to visit

Three short days for him to have time to get to know these strange people

People who are “strange to him”, unknown

I feel proud of how well he is doing

He has come such a long way on his journey, overcoming social anxiety and obsessive compulsive disorder

It is an ongoing journey

He came out of the bedroom on his own in the middle of the gathering

“I thought I would come out to be with everyone” he told me

He made that decision on his own

Talking with him and

Encouraging him to be a part of the gathering and talk to people, to at least say hello

He has made such huge progress over the past several years


Oldest son at home

Texting and FaceTime connections

Give a little bit

Give a little bit of your love to me

I’ll give a little bit of my life for you

Now’s the time that we need to share

So find yourself, we’re on our way back home


Two more days to be the parent he needs in this new environment

Meeting his needs

And meeting mine


Being there for all three of my children,

And my husband

And myself


April 1

Fresh starts

Foolish fun and games amount family

Easter, April 1, 2018

You’re on the road

But you’ve got no destination

You’re in the mud

In the maze of her imagination

You’re lovin’ this town

Even if that doesn’t ring true

You’ve been all over

And it’s been all over you

It’s a beautiful day

Don’t let it get away

It’s a beautiful day

Thank you to: U2, Beautiful Day lyrics

Supertramp and “Give a Little Bit

Five for Fighting and “Superman””

I am grateful for Google and Azlyrics

And grateful for all the poets of this world

Your words inspire me


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. 

Words can’t possibly describe….

I am grateful for our dog, Olive.

Olive came to live in our home one year ago.  She was our neighbor’s dog and I remember when I first met her, she was a small, adorable puppy.   A few years later, Olive became my daughter’s best friend.  Abby would go to visit Olive and we would take her for walks together and sometimes Abby would just bring Olive to our yard to play.

And then Olive became our magic angel who helped my daughter out of her fear and rage that went along with the severe anxiety that began to overtake my daughter’s  life when she was 8 years old.  We would sometimes bring Olive into Abby’s bedroom when she awoke in a rage.  Like magic, seeing Olive could help her calm down and begin to move out of  fear and be able to engage in life, to eat a meal or stop her aggressive behavior.

And so when our neighbors told us they were moving in a few weeks and the house they were renting did not allow all three of their dogs and asked us if we wanted to have Olive, what else could we have said?  Sure, my husband and I thought about it and discussed it privately for a few days.  We were already considering getting our daughter a dog in the future, possibly in a few months.

So Olive came to live in our home, first temporarily but knowing it could be permanent.

Olive more than tolerated our exuberant and energetic youngest child, Jason who was not yet 2 when she came to live with us.  We watched the two of them very closely in the beginning and had some couch “resource guarding behavior” to deal with initially but Olive otherwise had nothing but kisses and love for our toddler.  I am sure it helped that he gave her treats whenever he could get a hold of them and often as many treats as he could give her.

I am even more grateful for my daughter, Abby, thanking me for Olive. 

I am happy to say that one year later, and much time and effort helping my daughter with her anxiety disordrer (OCD), she spontaneously thanked me for her dog, Olive.  It is exciting to see her running up to Olive and saying “I love my puppy!”

Abby, gave me a Thank You card the other day. She thanked me for giving her:  life, love, giving to her, our cat, Peanut and Olive.  It was one of those miraculous moments of motherhood that you cherish forever.  One that erases hours, days and years of challenges.  For my daughter, it was also a monumental point for her given her experiences over the past year or so.  An expression of her new ability to write and express herself on her own and an amazing turning point in her life with severe anxiety- a sign of the “real Abby” the beautiful soul who is without fear and is pure love and joy. A reminder to the rest of us as to who she really is.

Today Abby asked me, “Why is Olive always already outside when I wake up?”

I resisted the urge to say, ‘Because you wake up so late and often don’t get out of bed until 9:30 or later’.  Instead, I saw her need and interest in spending time with her dog (something to be celebrated!)  in the morning and told her that I could bring Olive inside for her.  And I joyfully, brought Olive back in the house.

I realize that there are not words to describe or  fully express the magnificence of these small but huge leaps for my daughter.  She has always loved Olive and continued to when Olive came to live with us.  Yet, within days of Olive moving into our home, Olive became part of my daughter’s anxiety disorder.  She could not touch Olive for some time, maybe with her arm or the back of her hand and then later only if she had washed her hands for a certain length of time (read: a very long time).  She quickly grew unable to feed Olive- she couldn’t touch the container that held her food, and for some time, she couldn’t hold her leash.

At the beginning of this year, my sister, an animal love, dog behaviorist and kindred spirit with my daughter,   began coming to visit monthly, and spend time with Abby and Olive.  With those visits combined with Abby and Olive  taking a local dog training class, we have seen  improvements with my daughter being able to do more with Olive and improvements with her anxiety.   I used to have to bring Olive to Abby when she was in a “stuck place” and I would say, “Her’s your dog, Abby.  Olive loves you no matter what.”

Take all that I have described and multiply it in your mind by 1000 and now you have a glimmer of understanding of her life over the past year.

Abby may have a long way to go with her anxiety and maybe a lifetime of managing OCD, yet, to see her enjoying her dog brings us hope.  We want our children to be happy. When a child has had an experience of pure hell;  an experience that takes away her childhood  innocence , as her parent, you just want to take it all away and make it all better.    As much as I have wanted to take away her pain,  I have always known that I can’t do that.   It is her life to live and my job is to love her  and provide support and encouragement for her.  I can comfort her, but I can not take away the ‘bad’stuff, nor can I always make it better.

So to hear Abby thank me for her dog and to see her joyfully and spontaneously run  up to Olive and hug her and spend time with her is truly an amazing and beautiful sight to behold.  Our daughter is coming back.  She is showing wonderful moments of her true self, without the fear and anxiety and it fills my heart with joy and gratitude.

Write a Post a Week

Deep in my soul, I am a writer.  I feel called to write as my passion and purpose, despite my career detour in the field of Occupational Therapy.

And so when I read on Word Press about the post a day or post a week challenge, I had to sign up.  I have had the goal (silently) since I began my blog, to post a blog a week and decided this was a better way to commit to doing this.

Yet, as much as I love to write, I have missed a week.



That is the short answer.

My other passion is my family, my three wonderful yet spirited children and my husband, my best friend and soul mate.  Lately, I have also been working much outside the home as an Occupational Therapist.  I am lucky to be able to work prn (as needed) at a nearby nursing home with great staff, a place I enjoy working.  Out of financial necessity, I have been working almost whenever they call and ask me to work which means less time at home and less time to write.

I love writing and yet when there is pressure “to write, and now” it can be hard to really tune into my thoughts and write something meaningful.

I have been taking time to myself, weekly, or as often as i can, for several years now and sometimes it takes me several hours to unwind before I can dig deep and write from my heart.  The challenges of being a homeschooling parent and caregiver to three children, one a toddler and another with mental health issues added to the fact that when I do “go to work”, I am also serving as a caregiver, can be mentally and emotionally draining.  And so when I do take time for myself and to write, I am exhausted and want to chill out with spider solitaire or find myself reading my endless email or facebook posts, lost in a sea of computer generated messages.


Writing calls to me.  When I do take the time to write a post, or even an entry in my private journal, it energizes and empowers  me and provides the refueling I need to keep on going.  I return to my family with more patience and love and can enjoy being with them.

Writing reconnects me with myself which in turn helps me reconnects to those I love.  And having others read m posts (as someone who has been journaling for over 30 years), has added a whole new level of empowerment.

Thank you to all who read my posts.  It is added motivation to keep on track and post weekly!

Turning Point, a new start for 2011

Quoting David Wilcox from his album Turning Point, from the song Turning Point:

“you can live your life completely

that true path you’re hear to find

Or stay scared, leave your destiny behind

It’s right now, here’s the turning point in time”


“just one thing can kill this dream

To compromise your vision”

“we find our truth, or live some lie”

“It rides on this decision”

-David Wilcox, Turning Point

I can recall a number of times in my life that have felt like “turning points”.  As I embark further with my writing journey and putting myself out there with my blog, I feel more deeply this idea of my pivotal point in my life.  I believe it is about stretching out of my comfort zone and each time I do that and in bigger ways or ways more in line with my truth, it is pivotal, transforming.  Sure, it is usually scary as hell as well as exhilarating.  For me, the older I get, the more challenging change feels.

The past year, has been the most challenging in all of my 41 years of life.  My husband had been underemployed for over a year, after selling his business and taking full-time work only to lose it one year later, not laid-off but worse, made a “contractor”, leaving him underemployed and unable to collect unemployment. And I was 3 months pregnant with our third child.  We had waited to have a third child until he had full-time work so I could be home full-time.

I reluctantly agreed to go back to work after my youngest  turned one year after much resisting because I really wanted to be home full-time with him and my older two children.   Something I was not able to do with either of them during their tender early years. I kept thinking my husband would have full-time work or the work he had could turn into full-time work, but it didn’t despite all his job searching and interviews. My one year old was fine with me being gone a few hours a couple of times a week, but my pain went far deeper, 12 years deeper when I had to return to work full-time with my first-born, 3 month old son.

And as I began my journey, working prn outside the home again, my daughter’s quirks and issues at night-time snowballed into full-blown OCD.  Financially challenged, with credit card debt, maxed out home equity loan, homeschooling with three children, 12, 8 and 1, working outside the home and flubbing our way through dealing with our daughter’s OCD.  My husband had found more regular work at the same time my daughter’s issues got worse, working 3 days a week, 20 hours, several counties away with over an hour commute each way.  Good that he had this work, yet it was not quite enough to pay the bills and the travel time added stress to my daughter who is challenged by any kind of change.  Not to mention, the stress on our 11-year-old car with 150,000 miles that needed much work before all those miles were added to it.

Some think two parents working both part-time and sharing child caring is ideal, but it brings its own challenges. It is a balancing act of two different people being in charge as the primary caregiver and having to shift gears frequently between working outside the home mindset and parenting.  My husband and I share similar beliefs and values in regards to parenting and life in general and yet we are two different people.  It took me years to realize, we did not need to parent identically.  Yet, shifting roles as primary caregiver has always been a challenge especially if my husband is working from home and a challenge for our children.  We managed well when we were able to pay the bills but add the stress of insufficient income for a long period of time (despite having savings to use, when you are 41 and 52, you really don’t want to use up all your 401K money) and it magnifies the issue.

Life is a journey.  Parenting is a journey.

I am happy to say I can look back over the past year and see all the challenges and struggles and all the mistakes we made and see that I am coming through it.  It is a process and the challenges are still there.  We have learned, often the hard way with what “not to do” and continue to learn along the way as we find help for our daughter as well as figure out how best to juggle our finances.

The 20 hour regular contract work my husband obtained in March of 2009, ended or slowed down significantly in November of 2009 and so I began working as much as I could outside the home, hoping to continue my writing pursuits with my dream of earning income from my writing (something I am passionate about and can do from home ).  I kept on writing and working and parenting.  And that voice in my head said, “but you can make far more money working as an Occupational Therapist than as a writer and there is lots of work out there as an OT”.

And then, I hurt my back and hip on New Year’s Eve 2010.  I have hurt my back before and have had long-term issues with my hip but I have bounced back quickly with chiropractic and acupuncture intervention, walking and stretching.   This time was the worst and for over a week, I couldn’t  walk without lifting my own leg and taking pain medication,  600 mg of ibuprofen 3 times a day.May not sound like much but I count on one hand the number of times I have taken ibuprofen in the past 10 years.  I have moved to a more natural approach to diet and health and have been the healthiest I have ever been in my life with this approach.  And so to take that much pain medicine and still have severe pain, felt like a huge setback not to mention how it was interfering with being a parent and with living.

With this experience,  I realized, sure, I can more easily make money working as an Occupational Therapist, OT, but if I hurt myself, I can’t work as an OT and yet I can still write.  That silly voice in my head needed that slap in the face.

I made time to write despite my pain.  (I discovered that my lap top makes a great heating pad.)  And I began healing and could walk without severe pain and even was able to go to work with restrictions of no heavy lifting for a few hours.  They needed me to work and so I  made sure the patients I saw were high enough level to not need physical assistance.  I then saw how I need to take it slowly as I was exhausted after working just 3 hours as an OT 2 days in a row.

Here I am just 17 days after the mind numbing pain experience began, out at a coffee-house writing.  I have been reflecting on my life and experiences even more deeply than I have over the past year.  Each time that I am able to get out of the house and have several hours to myself, I am able to dig deeper and as I write, I learn more about myself, my journey and the person that I really strive to be.

I see more clearly the message in David Wilcox’s words, a song I have listened to many times over the years.

“you can live your life completely

that true path you’re hear to find

Or stay scared, leave your destiny behind

It’s right now, here’s the turning point in time”

This time to myself to write is vital to  my being.  It is my therapy for everyday life challenges and essential with the exceptional challenges I have had in my life and  in particular, those with my daughter.  When I return home after being out for the afternoon, I feel excited to see my family and energized to take on  day-to-day moments.  I see things with greater clarity and perspective.  Sometimes, and more often than I like to admit, as I look back, I then have a let down the next day, knowing that my time to myself is “over for the week”.  I get lost in the “daily grit and grind” of life and caring for three children, one very young and energetic and one severely affected by a mental health condition which has impacted our entire family challenging us in more ways than imaginable.

I hear David’s song and I share these lyrics even though they are not sequential, I picked the ones that struck me the most:

“Your compass is within you

You’re holding out for something real

How long the distance

Getting by and getting through

Your heart’s strong insistence, says nothing else will do

But it’s hard to breath inside some cheap disguise”

-David Wilcox, Turning Point

I make no resolutions or promises in this new year to do or refrain from certain things.  Instead, I take the oath to continue on my journey of life and self discovery, aiming to be a better version of the person I strive to be.  I accept my shortcomings and mistakes as part of my journey.  I strive to focus on my strengths and tune into what I do want to see in my life to draw more of the same to my life. I aim to spend more time writing and thus working on myself which is key to helping anyone else in my life.  I must first put on my own oxygen mask before I put on my child’s.

Every moment in my life is a turning point.  I make a decision in every moment, a decision  of who I now choose to be.  My only goal is to be “the grandest version of the greatest vision ever I held about who I am”.*

(*Thank you Neale Donald Walsch, and the Conversations with God books for that phrase and concept.)

Snow meltdown

My children have always loved playing in the snow.  I enjoy it too.  My husband, not so much.  So usually when it snows, I suit up with them and go have fun in the snow.  I have even gone to play in the snow with my 4 year old when I was 8 months pregnant with my second child.  It does not snow often in North Carolina and some winters we have no snow.  I grew up living in Ohio and Pennsylvania with many snow falls and have fond memories of one and two feet of snow.  We get real excited about six inches of snow here in North Carolina.

Unfortunately, I hurt my back New Year’s Eve and it has been slow healing.  Stress number one:  my husband has to go out which he does not like, I have to watch him put the wrong pants on our two year old and insist that he not put the size 12 shoes on his size 6 foot, because it makes it really hard for him to move.  (We put these boots on when it snowed the December 26 but the kids was miserable.  I then realized how big the shoes were, a few sizes too big is one thing, but twice his size!…I told my husband that would be like if he wore size 22 shoes.  He got quiet.)

Stress number two, my oldest child, who is 13 likes to get up, go play in the snow and then come in and do something else with his day.  Most days, he sleeps until 10am or later at times.  But today he woke up at 8:30.  His brain is somehow programmed to get up and do things like it tells him “Its snowing, so we need to go play in the snow now, before it turns to ice (another issue here in NC that I never had as a kid).  And then I will come inside and get warm and can go on the computer.”

So you say, “What is wrong with that?  The kid likes to get to things and get them done and move on to the next thing.  Why is that stressful?”

You have no idea…stress three, four, five, six, seven, eight, nine….I can’t count high enough to equate the stress level that my daughter has.  She has OCD, Obsessive Compulsive Disorder. If things do not fit the picture in her head, she has a meltdown, often rage, with yelling and violent behavior.  She may be 8 years old and petite but she is strong.  Certain things have to be a certain way and things get contaminated and then she has to perform rituals because of the contamination.  It’s a crazy cycle that has no rhyme nor reason.  It makes no sense and follows no consistent pattern that can be understood logically or by rational minds.

And so, her older brother going out in the snow to make a snow man, or a snow caterpillar like he has made, sends her into ballistic fits of rage and panic.  Life wasn’t always this way.  She used to enjoy going in the snow. Sure she might get in an argument with her brother over something in the snow, but nothing out of the ordinary.  We did not have these issues last year in the snow.   Life is different now, and has been since early last spring (2010). (See prior post)

This is our second snow of the season.  I saw this happen December 26 so I thought I could prevent the total meltdown this time.  I talked to my oldest about sleeping in and not rushing to go outside.  He woke up early, but waited until about 10am to begin pressing the issue.  My daughter quickly became stressed this morning even before any talk of going outside.  I think maybe her stress level rises, because she does not like going through these things, she wants to enjoy playing in the snow, but can’t get past the “OCD talk” in her head.  This is pure theory on my part.  The other issue she has and I believe is common to OCD, is that she won’t talk about what she is going through.  She just gets angry and starts demanding things.  On December 26, she was standing outside in about 6 inches of snow, in our large front yard, we have about a half-acre yard plus extra due to large county easement property.  She stood in the yard in all of the snow yelling, “He’s going to use up all the snow!”

You can’t reason with OCD, you can’t try to convince her this is not possible.  It took me a while to figure out that she did not like how the yard looks after you roll a snowball and see the grass.  She could not tell us she did not like that.  Only after I guess at these things and inquire, only then will she say, and not always, that she doesn’t like the snow all messed up.  But she tends to use exaggerated words, like all gone.  And then she demands that he not go outside before her.

So we were talking about going outside at 10 am.  I tried to give her the opportunity to go outside first before her brother.  But she wanted him to not build a snow caterpillar or a snowman or make any large snow balls.  And she was only getting madder about it.  We tried to really listen to what she was not saying and not judge and hear her out.  It’s not easy.  My hip and back pain seems to be exaggerated by stress and the nerve pain increases when I tense up.  Staying calm was not easy this morning.

Somehow, she totally melted down.  Worse than last snow fall.  My oldest, was getting to impatient to go outside and despite first asking him to wait 10 more minutes, I decided to let him go out because who knows how long it will take her to calm down enough to get ready to go out.

We haven’t seen the rage like she went through this morning in a while.  It is not easy to stay calm and patient when your child is ragging.  And managing the dog and the toddler and the persistent 13-year-old who just wants to go play in the snow.

Did I say that it is still snowing and is expected to snow all day?  Somehow we got through it today.  We got through the rage, the yelling, the demanding we stop her brother, her kicking the doors and mumbling about killing us all, and then the crying meltdown and panic attack with fast breathing, and then the calling our “help me” as she proceeded to wash her hands for about 10 minutes and then get clothes on.

They are outside playing now.  I even heard happy noises coming from outside.  I used to like to sit and watch them if I could not join them outside.  Not today, I needed to retreat to my room and write as my form of therapy.  I write because I need to, it is my outlet, and my passion and it is healing.  I also need to retreat to recharge.

Homeschooling my children and being with them 24/7 and I even have worked part-time out of the home, I need to have time away by myself to recharge my batteries, to gain perspective and clear my head.  Writing my blog on my bed, under the covers,  served that purpose today.

Now, my husband and toddler have come back inside and I can enjoy hearing my youngest talk about snow angels.  I feel calmer inside.  My daughter’s OCD issues still make no sense to me and are frustrating.  But I can separate myself enough to know it is her path and my role is to be supportive and loving and seek assistance for her.  I can’t change her, as much as I would like to just “get my daughter back” or go back in time and do things different with the hopes of preventing the full-blown OCD or maybe addressing it sooner.  If only….

Maybe this will be the last snowfall we get this winter.  Most likely, we will have more, and somehow I will find the strength to make the wisest decisions and plan ahead as much as possible and be ok no matter what happens.  It really boils down to that, I have to be ok no matter what happens because I can not control what will happen.  My mantra is:

I can remain calm, no matter what is going on with my children.

I will just keep repeating that today.

I can remain calm, no matter what is going on with my children.

Homeschooling life with my second child: experiencing OCD, the begining

I believe that all children have special needs and all children learn in their own methods and need to be treated like individuals.  I too, understand, having a background in Occupational Therapy, that some children have extra special needs that can make learning and living more challenging.  I have come  to really appreciate this more from an insider’s perspective over the past year.

When I began homeschooling my first child, I did so in part because of his personality.  He learned to read early and enjoyed everything academic.  He would become interested in something and would focus on his interest to an extreme for a long period of time.  He attended a morning out preschool from the time he was one until he was four.  I saw how he was not learning anything “academic” in his “preschool” but he was there for part-time day care and not for preschool.  Having a “late birthday”, November, made him older than his preschool peers and combined with his early reading and writing abilities, exaggerated the fact that he was not learning anything in preschool and that kindergarten would not be a good fit for him.  Homeschooling him was and continues to be “easy”.

Before you stop reading or shout things at me through the computer, let me tell you about my second child.  My daughter, born 4 years after my son, came into the world where her older brother was reading and writing.  He liked to tell her how to do things and do things for he.  She is an independent child, always has been and resisted her older brother’s attempts to show her anything.  She wanted to do it for herself!

I did not realize how unusual my oldest child’s attention span was or how calm he was, until my daughter was born.  My son walked at 16 months and was often content sitting doing one activity for a long period of time.  My daughter had more of a “typical attention span” and walked at a year and got into things my son never even attempted to do, like pulling off the child safety latch with ease or climbing on chairs.  She was busy and outgoing and liked being with people.  We soon saw her extroverted nature which can be a challenge to my son and I who are introverts (although we fall closer to the mid-line of introvert extrovert, her energy overwhelms us.)

Life became more challenging when she wanted to participate in activities but could not because she was not yet “5” as if there is something magical about that age. We started her in dance when she was 4, something she wanted to do since she began to talk, which she did at an early age.  And once she was 5, she could begin participating in more homeschool activities like PE class and other things like her brother does.

By this time, we were embracing a more and more unschooling lifestyle and way of approaching learning.  She was slower learning to read than her brother, but I trusted in the process despite her frustration and in time she began reading.  And amazingly (or not so) by about age 7 was reading at the same level her older brother was at that age.  But other things came slower, like writing, which is still slow.  She can make letters and enjoys the act of writing but writing words is a challenge.  I have struggled with how best to approach other things with her in our homeschooling life  Although I embrace unschooling as my approach to learning, I have always been open to doing what works for my children.  I believe that my son’s style of learning more closely resembles my own and so his journey of learning has appeared easier to me and I have been comfortable with our path.

I have attempted a variety of things with my daughter but likely did not give things enough time, as she seems to always resist anything I put forth.  Over the years, I believe I have become hesitant to even try things with her because she has such strong resistance to my ideas and efforts.  I have seen hypersensitivity issues with her but have always figured she is a more “typical child”.

It’s crazy how I can have a degree in Occupational Therapy which includes an education with pediatric development and disorders and yet miss signs in my own children.  My oldest had very delayed gross motor skills but it took me some time to really see it.  And my daughter has had many issues that I still do not see clearly.

A few years ago, she began over washing her hands and we thought it was my talk with her about germs.  Then we discovered that reading the book “The Velveteen Rabbit” had instilled her fear of germs and we thought letting her know that was written years ago when things were not clearly understood (they threw out all his toys because the boy was ill) and talking about this would eliminate her over hand washing. It lessened at some point but continued. About a year or so ago, when she was 7, we began to see irrational fears, like her food being poisoned, to the point of her not being able to eat and crying. I attributed some of it to learning to swim and doing new things in swim lessons.

But looking back there was more.  She really had a difficult time getting out of the house to go anywhere including dance class which she loved.  She craved being at home more which seamed odd for the girl who used to ask “Where are we going today?” and craved being with other children.  There were other fears too and difficulty sleeping at night.

Add to that a new baby brother born a month prior to her 7th birthday (January 2009) and an over sensory experience being a part of his birth, and us missing the signs or not really seeing all that was going on with her, and by early 2010 things exploded.  Around March of 2010, her bedtime difficulty turned in to refusing to sleep at night and crazy unreasonable demands to have the wood floors fully cleaned our replaced before she would sleep.  Somehow it all blew up into a germ obsession centered around her room and soon she began showering daily and then could only go in her room if she had just showered and there was a ritual with towel placement from outside the shower to her room.

On top of all this, an already discerning eater, she began refusing to eat most things .At  first we allowed her to pick what she would eat, taking her to the store where she picked all white flour, dairy and sweet items.  This never felt right with me as I have always been a “health nut” when it comes to eating and feed my family whole grains and limited diary for her as a young child when I saw signs of intolerance to dairy (something I personally experience as well).  We have improved our eating over the years to less refined foods, less processed and minimal artificial ingredients in food.  Looking back, with the birth of our third child, we were eating more processed foods, more eating out, and more sugar.

To add to the craziness, I took her to two alternative health practitioners that I had been going to and trusted and both suggested eliminating sugar and diary.  Her obsessive, compulsive nature took this to hear and she agreed to going off all sugar, fruit included.  And so without much knowledge (and looking back on this, not a very bright idea) we both went cold turkey off sugar!  Only later did I realize and read about sugar withdrawal which only compounded her behavior issues that were already over the top and out of control.

Those early months were a crazy time.  I read and researched enough to see that she likely was experiencing Obsessive Compulsive Disorder.  I also knew a grown woman with OCD as well as the mother of a teen age daughter with OCD to feel confident that this is what we were dealing with.  And yet, I actively avoided labeling her.  I saw no benefit in giving her that label, even though my husband and I used it among ourselves and with others but not with her around.  The experience was surreal.  Difficult to describe and yet a true lesson in living in the moment.  We learned what to do and what not to do the hard way, after holding her down, to prevent her from hurting herself and others and to prevent her from stopping my husband from leaving for work or my son from going to an activity.  We bounced around from engaged, reflective parents to angry, resentful controlling parents who just wanted our life back, and our child back!  The entire experience disrupted life for our entire family.  My oldest, now 12 was resentful of her behavior and how attention seeking she seamed and h ow much time it took of us, and therefore time away from him. And the baby was just a year and began imitating her angry outbursts, fits of rage, and physical behavior.  He became frightened with her and surely could not understand why his favorite playmate would not play with him now.

And then she began getting acupressure treatments and taking herbs from our Chinese Medicine healthcare professional specialist. And we saw improvements, especially in her behavior as well as her obsessions and compulsions.  Life became almost normal again and I had time to do other things.  I think that part of me wanted to believe that everything was ok and so I did not spend as much time as I could have continuing to seek help for her.  I wanted to on some level but on another, I was so drained from months of exhausting nights and challenging behaviors that brought me to wonder if our only hope was to call 911 or take her to the emergency room.  And so as things improved, I just wanted to live life and have some time to myself.  I became engrossed in a writing project and also was involved with a mother’s empowerment group.  These things were great for me and for my entire family, including my daughter.  I was feeling better and as always, my mental health was reflected back to me in my family.

As I look back on it, I see how it was difficult for me to step outside of it. I wanted to seek more help for her, but first needed help for myself.  I too have issues with depression and anxiety, never officially diagnosed for myself but it runs in my family.

To summarize, things got worse again and gave us the wake up call we needed to seek others sources of help.  On a positive note, my husband and I share parenting beliefs as well as spiritual beliefs which have helped us navigate this journey together.  We have made mistakes together along the way and in doing so have learned what not to do.  Our improved behavior and calmer attitude with our daughter, brought improved behavior with her. Sure, we still make mistakes and at times have a difficult time remaining calm when she is out of control with anger and irrational demands but we both see how important it is to remain calm and how our anger only fuels hers and adds to the problem.

We are still knee-deep in this journey but have found renewed hope with homeopathy.  We have also found comfort talking with another parent with a daughter with OCD who had tried most of the psychotherapy approaches for OCD wanting to avoid medications and then found homeopathy and have seen amazing improvements with it over the past year with their daughter.

I have learned that Obsessive Compulsive Disorder is NOT a child who wants things a certain way and is overly neat or organized.    This does not describe my daughter at all.  I have learned that having a child with “special needs” is not something anyone else can really understand.  I have felt the need to record and share my journey, knowing that others too are going through similar challenges with their children and how alone they must feel.  I have learned that people often pull away when you need them most especially when they can not imagine what you are experiencing or when it makes no sense to them.

I saw OCD described as a “silent disorder” which is a good way to label it.  To other people, it is not obvious or even apparent all that my daughter and our family has been experiencing.  They might see her dry, cracked hands and think she has exema.  They do not see what is going on within her, even as her parents, we can not see what has been going on inside of her.  She has always been a very verbal child but this has not been something she can verbalize too us.  What comes out is anger and demands.  It has taken much patience on our part, hearing about what others have gone through with OCD, and listening to her to even have a glimpse of what she is experiencing.  I think her inability to express what she is going through is in part due to her age, and in part due to the nature of OCD and the fact that it does not make any sense.

I have seen the value of activity to improve one’s life both as a homeschooling mom and through my education as an Occupational therapist where I learned, “Man through the use of his hands, can influence the state of his own health.”

I jumped on this knowledge over the summer with my daughter’s interest in learning to knit.  I invited my friend who knows how to knit and crochet to our house and one of Abby’s friends who wanted to learn this as well.  Abby learned to knit and crochet and I relearned to crochet and after a 30 year break, learned the next step of crochet, making more than a single chain.  A new hobby and one we could share has been helpful on our journey.  And yet, it is not enough to engage her.

She told me recently after having a family ornament making night, that doing a craft ” takes her mind off cleaning”.  This was huge!  The first time she acknowledged the irrational nature of her cleaning obsessions and saw a way to deal with it.

It also reinforced for me the idea that I need to create more experience like our knitting, crocheting gatherings.  I need to approach our life and her “homeschool experience” in this manner.  I need to invite people over our house for activities more to meet her needs to both be at home and to be with friends.  I think having a bit more structure is helpful to her as well, like getting together for knitting or for crafts or some other purpose would be helpful to her.  I am still figuring all of this out.

And when I look back, I see I am still struggling with the same issue I have her entire life, how to homeschool  my second child, how best to meet her needs, something that seamed to come so easy with my first child.    It has been magnified now and maybe brought more to light with her experience with OCD.  Yes, life is much more complicated now.  As her mother, I would  give anything to take this burden away from her if I could.  It hurts to see her childhood  innocence “shattered” with this experience.  Yet, on a deeper level, I know that this too is God and part of her journey.  My role is to stay calm and present despite her behavior and that has been a challenge.

As I have grown on my spiritual journey over the years, I have grown to believe in having no regrets.  This experience has been a real test to that belief  and there is so much I wish I could “redo”.  Yet, I must embrace what is, the life we have and my daughter as she is.