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

Archive for June, 2016

Depression

I am listening to my self created play list entitled “Writing inspiration” on Spotify.

This song by Tom Petty came on and it just fit my current state of being.

No, I don’t do drugs, never have.  That is not the point. The point is the title and reoccurring line..

“You don’t know hot it feels…. To be me”

Thank you once again AtoZLyrics

Let me run with you tonight

I’ll take you on a moonlight ride

There’s someone I used to see

But she don’t give a damn for me


But let me get to the point, let’s roll another joint

And turn the radio loud, I’m too alone to be proud

You don’t know how it feels

You don’t know how it feels to be me


People come, people go

Some grow young, some grow cold

I woke up in between

A memory and a dream
So let’s get to the point, let’s roll another joint

Let’s head on down the road

There’s somewhere I gotta go

And you don’t know how it feels

You don’t know how it feels to be me


My old man was born to rock

He’s still tryin’ to beat the clock

Think of me what you will

I’ve got a little space to fill


So let’s get to the point, let’s roll another joint

And let’s head on down the road

There’s somewhere I got to go

And you don’t know how it feels

No, you don’t know how it feels to be me

A Day in the Life of a family touched by OCD

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Dealing and Coping with Mental Illness

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

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

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

Back to my intent of this post….

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

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

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

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

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

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

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

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

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

Most likely a little of both. 

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

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

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

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