Tag: disabilities

Sept 2
Today I head into the local workforce center for some sort of orientation. It is mandatory because we have had to apply for federal assistance. I do not know if anyone knows or understands that being on federal assistance, when you come from a long line of blue collar joes, is a pride swallowing, soul sucking endeavor. Most people will “get” that you are asking for help, but when you are tasked with being THE person to do the asking and sometimes it feels as if you are pleading for help, it drains you. When your days are filled with phone calls concerning the health of at least one of your family members and fighting with insurance to cover things that so many take for granted. I am grateful that the assistance is there; however, I am not thrilled that I have to arrange for someone to come and stay with my family while I attend this orientation and then patch my husband through via phone because he doesn’t travel well and sitting in an office chair for 60-90 minutes will hurt him too badly. So today we will do orientation at the local workforce center. I have so much to be grateful for but right now I want to explain part of our current journey. A little “meet the crew” if you will.
My youngest girl, well she has horrible headaches and jaw problems. The simplest fix is for her to get orthodontic intervention that will re-align her jaw hopefully cutting down on the teeth grinding and most likely will put an end to most of her headaches. That is a simple solution and definitely less expensive, however Medicaid has stopped covering braces or orthodontic intervention unless it is deemed “medically necessary” so we had to be referred to a neurologist, then back to the primary care provider as a follow up and then a consultation with the orthodontist ALL so these 3 medical professionals can decide that braces and orthodontic treatment are medically necessary. Now mind you this is not a simple “straightening of the teeth” this is jaw re-alignment and straightening of the teeth which should reduce her TMJ symptoms, teeth grinding, and straighten her teeth. Someone explain to me why this loop of ridiculousness is necessary?? Why is her PCP and orthodontist word that fixing her jaw is “medically necessary” not good enough?? Oh and now the neurologist has referred us to 2 more specialists opthamologist and cardiologist, just to be on the safe side and ordered a slew of blood tests. ALL to get a jaw and teeth fixed. This is the logic I am dealing with on a daily basis. Trying to find some way to help my child who is in pain at least 4 days out of the week and often wakes herself from sleep because she is grinding her teeth!!
My husband is a different story entirely. Enrollment papers were not mailed out to us so we defaulted into a healthcare plan that we did not choose. We find out this error when his neurologist calls to confirm his appointment and get his insurance information. So guess what?? Yeah, that neurologist doesn’t accept this insurance!! So what looked like HOPE…that we got into a neurologist rather quickly has turned into NOPE…BTW I made that appointment for hubs at the same time in June that I made my daughter’s (her appointment was August 27). Primary care doctor wants to have cervical and head MRI done, to get a better picture. He tries 3 times and insurance denies. So he refers to neurologist hoping that as a specialist the neuro will have more luck getting tests ran. We may wind up going to a hospital and asking to be admitted for observation and testing. Honestly I feel desperate at times. Sleep deprived sitting up answering surveys, working my Younique business, blogging, researching figuring out some way to hustle up money to pay the bills.
My middle gal, I love her to pieces as she has such a terrific heart and she can be an incredible person. BUT, yeah you knew it was coming, she has an alphabet of diagnoses. NO really, PDD-NOS (aka autism spectrum disorder), BPD rapid cycling, ADHD, ODD and a couple of others but I try not to focus on the diagnoses because she is so much more than all of those letters. Oh and let us not forget she is also 14 and hormonal and teen girls WITHOUT any neurological and gastric issues are in and of themselves a handful. And my middle gal is more than a handful. She has good days that can be incredibly awesome where she sleeps well, wakes up refreshed and accomplishes all of her tasks for school work and even may do some chores. But those bad days man they are doozies here lately. We had taken her off medication because she was homeschooled and we wanted her to learn coping mechanisms versus using pharmaceuticals as a crutch. Don’t get me wrong, modern medicine is AMAZING, but she is still developing all of the things that will make her who she is and I (we) are not fans of what some medications can do to a developing young person.
Then we have the oldest of our girls (the ones I gave birth to) and she has dyslexia and asthma along with an old shoulder injury that acts up from time to time. She is a real doll and my biggest helper and cheer leader. She is so dang smart, until you put her on the spot to read something and then she sort of shuts down. She learns by doing and seeing things done. She loves a good story but reading is problematic and she has lovely handwriting because her stubborn little butt sat down and hand copied the library books she brought home and PRACTICED her pretty handwriting!! I let her use my kindle a lot because it has text to speech and she can make pretty much any book an audio book and I try to help her understand literature by having her follow along the text to audio or watch a movie or play versus reading them. She has pretty darn good instincts too and is sensitive to energies around her and that may come in handy with the horses she plans on training.
We also have Babyboy in the house, he is almost 6 and he was our unexpected surprise baby!! Like for real the doctor congratulated us and apologized in the same breath!! He is an awesome little dude. SO articulate and he loves Farming Simulator and Minecraft and videos of people doing things and building things. Think planes, trains, and automobiles and that pretty much cover it and LEGOS, cannot forget about legos!! He is a boy alright and also loves to be outside and get dirty but hates to take a bath and wash his hair. He is a real snuggle bug too and is so very generous with smiles and hugs and will absolutely out of nowhere tell you that he loves you.
You may have already noticed that Big boy and Big girl have left the nest to pursue other things and for that I am humbled, grateful, proud, and just a little sad. I will when necessary update on their young adult lives but my focus on this blog is the journey of life and those we encounter so be prepared to meet some characters along the way. And while it seems like time has hit fast forward in some places and in others its as if someone has hit pause. How can that be?? My kids are all growing up and getting older and yet we still seem stuck in the same situation. Faith is the hope in things not seen. Giving up is not an option when someone is calling you mommy. Love and light readers. God Bless ya for reading!