notjusthealthnuts

This morning was a gigantic reward for us.   Ghost child's visit last fall with her ENT was disastrous.  From a dismissive and massively insensitive doctor to a nurse who told my daughter she needed to behave so she will not "end up with hearing aids and people look at her funny." You heard that right.  Oh, this ate at me for months.   This isn't the first time either, I have heard from the hallway "give her what she wants."  We never went back there either. That's toxic and that toxicity leaks out.  The infection had to be removed and the wound healed.  We sought a second opinion and it rewarded us today.  The part that rewarded us the most is the understanding that part of the problem in the fight was us in communication.  Effective communication is crucial.  It benefits your physical being directly, possibly directly your mental health.  Been there.  Being able to communicate with your doctor affects your emotinal...

Here me now- I am not claiming total head monkey control.  However, there are ways to quite them and get them mananged.  This has been HUGE for my daughter and I.  We have monkey riots in our heads often and they just needed to settle the hell down. When the head monkeys are out of control they need to be fed. First in a head monkey's diet is sleep.  Lack of sleep makes them louder or controlling them harder. I am not sure which. Either sucks.  Set a iron clad routine.  For adults, around 10 P.M. and up around 6 P.M. following the rhythm of nature. If that time frame not possible, seven to eight hours where you are able.  Uninterrupted.  My kids and I are still in negotiations on that part.  Settle into a non engaging activity thirty minutes before bed time.  I absolutely CANNOT read  before bed.  Book are engaging and insomnia inducing for me. My daughter it's the opposite effect. As a  matter of fact it can put her t...

We have been in a steady uphill push for the last few weeks.  The winter break is out temporary finish line and it's a mad dash.  So much is poured into a child with special needs- from testing to doctor visits to therapies to extra work at home to extra work from us. Each experience is unique but "extra" is the common thread.  The "extra" is bearing down on us.   The past two Thursday mornings we have had the pleasure of company in the waiting room.  My fellow waiting room veteran mom and I are ecstatic to let our three year old boys impromptu play-date while getting to converse with an adult.  Yay! Today we dealt with the common thread of  the "others."  We have at least three other children plus some transient bonuses.  Each week therapy is two hours by the time we travel and complete a session.   Two hours is a significant amount of time and we integrate/build in extra time during the week.  That's just therapy.  The...

As our homeschooling continues, the expected ebb and flow of learning has cycled through a few times.  For any child learning it is normal to do a roller coaster of sorts. For Ghost Child- the highs are euphoric and then you plummet with a few plateaus somewhere in there.  Today we have hit all stages from raging tears to victory shouts. It's draining on the both of us.  Especially fighting Red Reign of Terror's fascination with the sink and lust for pouring glue.  I was torn between stopping a flood, teaching, counseling, and preventing sticky situations.  Some sanity points were lost along the way today.  How do we survive this daily?  This: Do what works best for your family.   Balance is key- do what ever works to accomplish what you need to with time to relax- consistently. Get involved and pace yourself.  I read constantly and now joining webinars on my daughter's disorder with a few reputable organizations.  It can suck y...

I didn't think that was possible.  Decluttering my brain.  Most of the time my brain is like those annoying rubber balls let loose in a steel cube competing with the speed of sound.  A lot going on with not much room to go anywhere else.  It was like this before kids.  Now there are lots more of additions, noises, schedules, and distractions.  Sitting down is hard enough but sitting to be quiet and focus seems like a joke.  Even after establishing a meditation practice.  This week has been rough.  As I watch Ghost Child take an interest and begin to meditate to calm, it becomes real.  Our meditation practice is as important as breathing and sleeping.  For our brain survival and surviving our emotions, we need it.   If you have a thriving meditation practice, then Namaste my friend and all power too your practice.  If you struggle to focus or have distractions, then Namaste my friend, we completely understand this str...

This is on the tail of my last post concerning ghost child.  I alluded to our process being years of sharing concern and month of pushing to get results.  By years, over seven years. Of multiple concerns.  Most of those years dealt with advocating with medical professionals, some of those "professionals" the term is used loosely.  The primary issue with ghost child is conductive hearing loss that was apparent from infancy and multiple surgeries.  We now have medical recognition after four surgeries that her continued struggles with out intervention that it isn't normal.  It took everything I had not to respond, "no shit Sherlock."  However, at around age four it became very apparent there was more.  No one "saw it" except us and a few family members. I was flat out told last year that she isn't a behavior problem, alluding that there must not be anything going on because she isn't having behavioral referrals. Great, discrimination based on my c...

Last night it hit me with full force how these past two weeks have been a long needed victory laps for ghost child.   Normalcy doesn't really exist when a significant amount of your time is spent on a child with special needs, especially in testing or diagnosis.  If you are aware of  your concerns, knowledge of the process, and aggressive in diagnosis, it takes about a year.  Us, eight months of concentrated pushing. Years of voicing concern.  We have arrived to healing. Now therapy with therapy homework.  It can be all consuming and finding balance in a new normal is imperative.  Pulling ghost child home was the best decision.  I feel a lot less pressure in her care with flexibility and non compete with the school system on her needs.  We are integrating her speech goals as opposed to shoving them in at the end of the day and trudging through them on weekends.  I am watching her self regulate her modifications, gaining confide...

I knew this moment would come as her last day with public schools approached.  Bitterness is the root and working hard to not let cynicism become even more prevalent in my heart concerning this issue.  This kind of negativity will  misguide a better path and loose sight of the real fight. Ghost child did have a sweet send off and lots of sweet notes from her friends and teacher in her agenda. She got hugs and good byes.  My daughter is no longer anxious about the transition; instead, she is excited about her possibilities.  She has input in her education. Aside from core subjects that she will be responsible for and taught to regulate herself with accommodations long needed, ghost child is going to learn to cook and take art classes at a local art studio.  It's her decision and commitment to her interest and skills.  I am estatic for her. But the anger seethes.   Pulling her out of school and saying good bye was way too easy.  It was more...

My silence on this blog was not for a lack of opinion or expression.  Anyone close to me knows I am in no shortage of either.  Since the last post, our lives were consumed by daily living, major events, major fails, and the quest for help for the ghost child.  In this time, our path hasn't changed much.  We have more faith in our direction, growth in understanding, and a few battle scars.  Often I find myself being asked or offering advice on my wellness, our family wellness, and our ghost child's wellness.  With this in mind, it's time to revamp this blog.  Our life is incredibly atypical and has always been.  At times we feel isolated by our uniqueness but we are anything but alone.  This will become our documented advice, suggestions, life face plants in the mud, and "Hell Yes We Did It." The first step on the revamp is catching up with the ghost child.  She is still a ghost in the school system.  The way the battles been, I f...

It’s been so cozy in our glittery wonderland of bubbles and glitzy paper; however, the holiday tilt a whirl has abruptly told us to get the hell off.  The ton of brick of sorrow and fury hit full force today.  It’s not a new or sudden burden, but a reality being acknowledged and denied all the same.  For years, I’ve been told “she’s okay,” “there’s nothing wrong,” “we don’t see anything.” My daughter is the ghost child.   You see the specter but right through her because you don’t see.                 While my daughter is “okay” she’s not “okay.”  This morning’s event has continued months of agonizing, acceptance, determination, reflection, and writing.  In reflection, I keep going back to her preschool years when I literally thought I was going to lose my mind. Literally everyone indicated that there wasn’t anything wrong.  It kept nagging as we stumbled through docto...