100 days of Gratitude

Tomorrow is April 1^st and one of my fave months.  I have seen a few people doing a 100 days of happiness posts on FB and while I love it, I am not in that space to keep up happy for 100 days.  I know it’s a choice and finding the simple little things that make us happy but I have decided to do 100 days of gratitude instead.

I haven’t said anything lately for fear of boring you all but my Dystonia is extremely bad at the moment.  My mouth is incredibly painful and I am once again constantly sipping hot tea, cold water, lip-ice on lips and sucking sweets.  I met a lady this weekend while on the river that has dystonia in her whole body.  Her hands and feet and back are especially bad.  It was great for both of us to chat and share although I was surprised how unconnected she is.   I find it easier to find other Dystonia sufferers to compare docs and meds and who get how utterly depressing it can be.  I also felt guilty because she has it so much worse than me and many sufferers are limited in their physical activity.   For me it’s just the pain aspect and speech but otherwise I am not limited in my movement.

My triathlon is in less than 4 weeks.  I am really nervous and don’t feel prepared at all.  I know I have just under  4 weeks so do have time but it is still daunting for me.  Doing the sprint distance was such a biggie so doing double is pretty scary.  I am also afraid of the icy cold water and apparently the smell in the harbour is pretty bad so I don’t want to feel nauseous as swallowing some lovely stinky sea water will unfortunately be inevitable.  I am not sure how stiff I will be getting out my wetsuit and then onto my bike.  I get cold quite easily.  I might wear an old top over my Tri suit and then just turf it mid cycle when I get hot.   The run will be OK as I can walk when I need to but I am still hoping for sub 1 hour 10km run.  Maybe unrealistic but we will see.  I know many of you think why do something like this when I am already anxious and struggle with back pain as well as my mouth.  I get that it doesn’t always make sense but so much of it does.  Growing up non sporty in a very non sporty family and then getting to totally reinvent myself at age 40 is cool.  Love it.  I love the camaraderie of the sport.   I love the extremeness, the discipline and sheer force of will it takes.  I love calling myself an athlete, it is so foreign for me.  Athlete?   It is also a way of saying F-you to my back and my mouth.  As a stubborn old mule I refuse to accept that my physicality means I can’t play.  I am playing too!  Not as fast and not as far (no thanks to full Ironman!!) but none the less I am swimming, cycling, running and I am doing it with everyone else.   

So, plan:  Chat to my coach and get some perspective.  Practice a transition after a cold sea swim when I am at the slurring speech stiff fingered stage.  Do a 40km cycle time trial and see if I can get to 90 minutes.   Buy cycling shoes, MUST get out my takkies and over my fear!!  Will be only arlie at ITU in takkies cycling along with all those people watching.    Phone my neuro and ask why my back still so sore a week after the facet block.  Right, back in the saddle.  I can do this, I’ve got it.  Grateful already and #100daysofgratitude only starts tomorrow.    

Keeping Sofie, Keeping sane. The Plan:

A major way of dealing with my anxiety is planning.   My entire study schedule is mapped out for the year with each day having a different subject and quantity of work I need to get through.  Holidays are blocked out (the 1^st year I made the mistake of scheduling studying in during school holidays and it just doesn’t work)  My files are labelled and shelved and my books on labelled sections of my shelf.

The kid’s schedules of extra murals are written up for each day.  The sports bags are immediately repacked and hung up on hooks in the garage.  I have everything written in my diary and reply slips and money are sent back the next day.  Fetching them stresses me out every single day as they all finish the same time at different locations.  I am longing for Daniel’s car more than he is!

Now that I have a Tri coach my training schedule is carefully worked out.  I have only ever missed one day and I hated missing it.  Made me irritable and anxious.  I like to see what I have to do each day and even when I run, I take a little piece of paper with to complete the set.   Control=calm.

I never run out of loo paper, cleaning materials, bread or milk.  If I can avoid situations that cause me stress then I do.   When I blogged often in the past and it was about something controversial I used to get very anxious when people got nasty in the comments.  Now my life is too crazy to debate over random topics that cause all sorts of trolls to come out and vomit up their malice.  I have also learned that mean people are usually hurt and insecure.  They break down others because they themselves are broken.  It makes me softer in my response and I take it less personally.

The problem with my life at the moment is I have too much going on and nothing can give right now.   I am consciously controlling my anxiety every day but my Dystonia is very bad and my mouth extremely sore so I guess much if it is physiological and beyond my control.  Next week is PMS week and then the wheels normally come off.  I have xanor for emergency and plan on taking it for 3 days to get me through those hairy days.

I sound a bit OCD but I am really not.  It’s my stress management techniques I employ so I can lessen the anxiety.   The school situation with my Sofie almost sent me over the edge.  I take this mama thing very seriously and I am well aware of the potential we have as parents to make or break our kids.  Studying psychology doesn’t help as most of the sh*t adults deal with seem to stem from childhood issues.   Anyway the Sofie plan is as follows:

No Waldorf school for now.   After the 1^st visit I thought what an amazing place for her.  Then I started researching and like anything alternative, opinions are either very pro or very anti.  My biggest concern was integration back into main stream school if I sent her to a regular high school which is the present plan.  If she did stay how would she cope at varsity?   Some said fine, some said they were way behind.  A friends sister had to be home schooled for a year just to catch up.  Each child is an individual so it’s hard to say.  Apparently the discipline is not strong but she is a well behaved child so that wasn’t an issue.   Lack of sport also not an issue as she has club swimming, riding and rhythmic gymnastics each week.  But anyway, Waldorf shelved for now.

Coping mechanisms at her present school:  I have employed a tutor once a week who is highly trained and teaches at another school.   She will help her once a week for now and every day during exam time.   She is over qualified so doing me a favour actually and Sofie loves her so it’s a win-win.   Then every day Rebeka meets her sister at her class to help pack her bag with all the books she needs.   Old clothes come home, sports bags, lunch boxes and most importantly the correct books.  Rebeka gets paid R20 a week and Mom keeps her sanity.  I know I am not empowering Sofie but when she is a little older and less overwhelmed she will learn to do this all herself.  Sanity 1^st!    I have kept her on the 10mg Ritalin for now and quite honestly don’t know if it’s making any difference.  If she continues to cope how she is coping I will either keep it at 10 or take her off to see if there is a difference.  I will not change 20mg unless I absolutely have to. 

I am also looking at ADD and ADHD kids in a whole new light.   The amount of Loebenberg kids who have ADD and ADHD is crazy.  I have decided it’s not a disability.  It’s simply an inability to cope with the rigidity of the mainstream school system.  We have smart well balanced kids who are simply too clever or creative to do arb and boring mundane tasks in their grey socks and grey trousers.  These are curious creative people who when they find something interesting, can hyperfocus.  It is why so many entrepreneurs are ADHD  and very successful.  They are leaders who think out the box, who are prepared to take risks.  I am excited to see who they all grow up to be one day.  As we driving to gym today Sofie asks me: If a mother who only has one child loses that child because her child died, is she still a mother?  What a very sad question but a rather deep one for a little person of 9.  Yes my Sofie, she will always be a mother.    I will always be a mother, I will always worry about my kids and I will always do my absolute best for my 3 people who I am so blessed to have given birth to.  Like I said, super fierce and extremely vulnerable all at the same time, that’s just how we mothers roll.

When your kids just do not fit the rigid shape mainstream school demands

Its 4.19am and I should be sleeping.  I have a crazy day ahead starting with a 6.00am swim training session.   But I need to write and I need to share and I need you to share back.

Most of you know I have a 17 year old boy who has ADHD.  He is incredibly clever, impulsive and analytical and mathematical.  He is an entrepreneur and he will do something remarkable with his life one day.  Yes I sound like a biased mother but I have always said it and I speak it over his life.   Although his grades don’t reflect it he had to take an international test to get into the Australian school 2 years ago and he scored 95% for maths and 90% for language.   This is a world wide test for all kids his age.  Daniel is not an average kid but he IS in a mainstream school and forced to fit into a shape he doesn’t naturally possess.  To get him to get through this sausage outdated old factory he needed meds which we started in grade 5.  We only did week days as on weekends and holidays I wanted my real Daniel, crazy as he makes me.   Now he is in grade 12 working his butt off to up his marks so he can go to university.  His maths marks are 6% too low for the course he wants to study.  His school refused him extra time despite his paed's report on his ADHD.  They wanted me to have him reassessed again by a number of people despite him being on meds for 5 years with an expert doc and an assessment by an educational psychologist.  His spelling and writing and lack of time means his intelligence and capability is not reflected in his grades.  

Rebeka is 11, a very artistic, sensitive and compassionate little person.   She is left handed and loves to draw and write.  She is a people pleaser and likes order.  She copes well in the sausage factory although the bullying side stays hard for her.  I have noticed her creativity has decreased somewhat over the years as school forces her to follow the pattern.  Fortunately she does art and drama and music which I intend to encourage.  She loves riding and has a unique bond with horses, another beautiful sensitive animal.

And Sofie, at 9 just diagnosed with ADD and drowning at school.  In real life at home she sings and draws and dances and every night I have to make up a dream for her in a fantasy world.   She has always had anxiety which school just exacerbates.    She is my mermaid child, my dancing ballerina on a horse.   After school she has art and drama and solo singing and guitar and rhythmic gymnastic where she gets to twirl and dance and move.  That’s her stage, where she is confident and Sofieliscious.  

Last night I watched this clip on TED http://www.ted.com/talks/ken_robinson_changing_education_paradigms.html and I watched a few others including one by a 13 year old boy taken out of mainstream school at age 9.  I watched another talk from Ken Robinson about creativity being as important as literacy, Prof Ken is hilarious btw.    http://www.youtube.com/watch?v=f6YgiwMr0JU  While it clearly gave me another sleepless night it did really confirm what I have been thinking lately.   I just don’t know what to do with my Sofie and my gut tells me to take my butterfly and find her a garden to grown in before she either dies in mainstream school or I medicate her until she becomes a moth and copes and fits the correct shape.  She would still be happy, she would enjoy school more and she would cope with the big pressure and workload grade 4 brings.  But would she still stay my Sofie, my Sofia Josephine…destined for great things in a creative and colourful space she presently occupies.   I don’t believe so.  I went to The Waldorf school open day on Saturday as an alternative for her.  I think she would love it but I have many concerns.  Gary more so.  After reading the big anti-Waldorf rants he googalised we are just unsure.  For now she would thrive there but am I doing her a disfavour in the long run?  If I send her to mainstream high school (I want her to go to Rhenish) will she cope?  Will Waldorf equip her for varsity, for a career?  Am I thinking too short term?   I just don’t know.  If anyone has experience with a Waldorf school please mail me or inbox me, good or bad, I need the info.  Add is doulamel@gmail.com

I would need to decide now.  I have paid my fees for the whole year at her present school so would hope they would reimburse me.  Waldorf is three times the fees.  I would make my complicated life more so with 3 kids in 3 schools.   I would leave Rebeka all alone at her present school, she has less than 2 years left and is doing so well so would not move her.    I haven’t told Sofia yet so please do not say anything.  Last time I wrote a update about Rebeka on FB I asked the school parents not to say anything to their children and they did anyway and she was embarrassed.  I don’t want to stress Sofia out until Gary and I have both decided and then I will take her to the school so she can see herself.    What the feck am I doing?  It feels like I am at this crucial crossroads with my daughter and I don’t know which way to go.  I am going to pray more, research more, visit the school again and I am going to hope for advice from you lot, especially the ones with unique ADHD and ADD kids and Waldorf experience. 

I am beginning to think that all these ADD and ADHD kids I know, many of them my relatives are simply butterflies caught in the moth system and the only way we can get them to cope is to medicate them so they are able to learn in that forced pattern in an increasingly competitive and demanding world.  Are we helping them, making their lives easier so they cope, love school and keep their self-esteem or are we killing their spirit and their uniqueness in a world where we are forced to conform?  I don't know, I just don't know. 

My car is now a tricycle.

Clankitty Clank goes my 3 wheeled car as one of my wheels come off and rolls speedily down the road.  It looks like I have bitten off more than I can chew and something has to give and I don’t know what.  I am probably going to ramble on here so store up all your wisdom and advice and hit me with it when I am done venting/thinking/pondering and contemplating.

You know how you never say I have NEVER pranged my car because you feel you will jinx things and Murphy and his law will ensure you do just such a thing.  Well I don’t want to say anything about my Dystonia and mouth but let’s just say the Redilev meds seem to be finally working.  Yay! The issue is the combo of Rivotril and Redilev make me sleepy which makes it hard to study.

The studies…well my psyche subjects are very interesting this year and I am analyzing people left, right and center including myself.  Because I want to finish in 5 years I have taken on 8 modules and the workload is rough.  I write 4 exams in May/June and the rest of the year will be easier.   Gary wants me to give up something and says the studies are too much.  Let me explain to you why I want to study in no particular order:     
It’s interesting and challenges how I think and how I see the world.    I feel myself growing and changing and my belief systems evolving.
At 17 I was told to study social work.  I never did and they say it’s never too late so now is the time.  I believe I can be an excellent counselor/therapist/social worker.  Are we allowed to call ourselves excellent?  Nelson Mandela says we can.  We don’t have to play small.  I am empathetic, non judgmental, I listen, I have life experience, I love people, I love my country, I am not afraid to challenge what I believe is wrong or unfair or unjust. 
I have NO financial independence.  In the past few years I have seen 2 good men who loved their wives have affairs.  Both were having a rough time and felt emasculated and looked for affirmation in the wrong place.  Marriages and families were crushed.  I have lost my security.  Gary can promise me but we cannot predict the future.  I was cheated on once before many years ago and left with debt and no money or support, a house I had to manage and pay for and a 3 month infant in my arms that I had to mother with a very broken heart.  I am battle scarred, I am afraid to be totally vulnerable.  This is no reflection on my Gary who loves me and is most likely to care for me for all my days.   I want to know I can have a career and earn an income.  Yes I know it won’t pay well but it’s what I need to feel safe.  (I sound screwed up.  Life, it leaves us with scars)   
I have already invested over 2 years and have 3 to go.  To give up now would be such a waste.
I love having a sense of purpose.  I am not drifting aimlessly.  I am on a mission and it feels good.

So the downside is obviously the time commitment.  I never do lunches, teas, birthdays, baby showers, coffee dates.  I am at my desk every day.  From 2.20 its critter time and then I run around the whole afternoon.   It’s a huge commitment and UNISA is lonely.  No lectures, fellow students etc.  Just me and my goal of earning my degree and having a meaningful career and a salary.  Having a purpose when my kids are teens and only need me for lifts and cash.   So I can’t give it up.  I don’t want to 90% of the time.  The other 10% I want to quit is normal.

OK, so the studies stay.  Next…my triathlons.  Last year I set myself that goal and I did 2 so far.  The feeling of achieving such a big goal was amazing.  The discipline and dedication that this sport requires is enormous.  I am not athletic and could not run or cycle but I am Dutch and we are known to be a tough and tenacious bunch.  That little girl who had her finger in the wall to stop the water in the story where she saved her town, little Dutch girl!   (not saying dyke, you will all be rude!)   Now I have this goal of my 1^st off road Tri next weekend  and the Olympic distance Tri in 10 weeks time and I so want to achieve it.  I am enjoying having a coach and although bloody tired, sticking to the programme.   Today is the first day I have not stuck to it.   Yesterday I half fainted and fell over hitting my arm and my body is saying NO.  I need to rest today.  I am going to get some supplements to keep my weight and energy levels up.    When the event is over I will take a few months off and do lighter training until closer to the Tri in October I want to do.  As for Ironman 70.3, I don’t think it’s going to be possible.  That one I might have to let go. 

Next huge weight to carry, managing my household and critters and the afternoons.   I love being a mom.   I used to want to be a stay at home mom and I was for 3 years and then I started the charity which I ran for 5 years and then it was surrogacy and then studying.  I have always felt I am a good mother although lately I think I am not getting it right as I am just too over extended.    Daniel is OK.  He is 17 so the world revolves around him and his GF.   It’s OK, time will pass and he will grow up and once again consider how I feel and appreciate and see me.  That sense of entitlement will change.  My stress with him is getting him through matric and into varsity.  I am not going into the whole London thing but seeing him not take advantage of such an enormous opportunity was disappointing.   I would love more help and support from him, affection, appreciation but he is 17 so I am likely to get dirty laundry and old mouldy plates left up in his room with the odd gesture of affection instead.  Its OK, really, it’s OK.
Rebeka, my sweet one who is so distressed to see me so close to cracking.  I feel guilty that I don’t hide it better as she feels responsible.  She is the ONLY one in my family who will try and help.  Who notices.   She is trying so hard to do her bit.  On Saturday I am taking her out on my appreciate her day.  Today she gives anon Valentine’s gifts to everyone so no one feels left out.   I wish I could take her away for 2 days and re fill her with what she gives out.  3 boys asked to be her Valentine.  The Valentine who marries her one day, he gets a prize of priceless worth.
And Sofie, giving me the most stress.   She is drowning at school.  She has not bonded with her teacher.  The 1^st male teacher she has had.  She is struggling socially.  She doesn’t want to go to school.  She loves her music and choir and art and drama.  Just not school stuff.  She struggles to concentrate, she falls behind.  Her writing and spelling is bad.  I suspect she might be ADD too but I have tried to deny it forever.  With Daniel being ADHD it’s been a long road.  Sofie has had all those tummy issues for years.  Add Ritalin to her little body?   I just don’t know.  I need to see her teacher and my paed Pete White.   I do know some of her social issues could be ADD related.  I might try low dose Ritalin for 3 months and see.  The thought of it, makes me sick.

So what gives…nothing.  I can’t give up anything so my only option is to get help with the kids.  I know you think they do too many extra murals but I come from that generation where you just got on with it.  Good at something…no extra coaching.  Sh*t at something, no extra help.   Homework was up to you, do it, don’t do it.  We are that under parented generation who over parent.   I want them to have the opportunities.  To try things like music and art and drama.   To be well rounded.  And please don’t think I make them do stuff they don’t want to.  Sofie begged me for 3 years to start rhythmic gymnastics which she had to give up dance for.  I have just taken Rebeka out of dance.  They now ride with Carmin when they can so they can fit in drama and eisteddfod and have given up teacher Meg who they love and horses Lilly and Charlie.   I could say no to lots of things and make my life easier but I am their mom and I create their base to grow on.  To explore and develop their gifts, talents and interests so they can be ready and confident to be launched into the world one day with the world at their feet.   

But this is too long now and I need to hit my books.  Plan: see teacher, see paed, see my own doc (still have swollen lymph) and also my psyche for a head shrinking session.  See if I can get some help a few days a week.  Get on those supplements.  Hold a family meeting and explain to all where I am at.  Right, back on horse/in car with that wheel tentatively put back on.   I will get a hold of my life, I have to.