notjusthealthnuts

 Recently we decided to join a community group specific to our ghost daughter.  As time approached for the meeting she began to breathe heavier and her personal space boundary became wider.  She is excited but the nerves were too much.  Everything turned out fine; we had a game plan. This is going to be a great thing for her.  We just have some hurdles.   For the ghosts and ghost children, advocating  is twenty-four hour immersion of tactical decisions and communication.  It's exhausting.  Being a part of a community can help with this and extremely important for mental health and soul health.  We need to this.  There are ways to make connecting smoother and intentionally beneficial on both ends. Pick Fellow Advocates and Be Bold  Family and community can be potentially strong support system.   In specifically advocating for your ghost child with family,  I would start with unloading concerns and expla...

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...

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...