Congenital Harmony

Lets talk about supplies. Durable medical equipment (DME) companies are supposed to be there to support all of us family members who care for the sick or deserving. He they are sometimes more of a hindrance than a help. DME stands for durable medical equipment. This can be broken down into equipment such as feeding tubes or oxygen down to the simple tubing for feeds and the diapers/incontinent supplies. But they and also include things big like transportation vehicles or safety sleeping arrangements.

So I can only speak of my experiences with them. Most of my occurrences have been less than positive. Now I am not going to speak ill of those who help. Some of the employees bend over backwards to ensure your shipment arrives to you. I am going to assume that all of you have those angel personnel who we all try to find out their direct numbers and deal with no one else. However until you find those people, our life may be a little more complicated than it should be.

My daughter currently obtains her items from 3 different DME companies.

The first one is for her food and food supplies only. More times than not, I place her monthly order to receive a message stating the account will be updated in 24-48 hours. Simple, right….WRONG. Even after a week, the online account update does not exist. As a follow up, I will email the supervisor, who will followup with a justification as to why they “never retrieved my order and to disreguard my confirmation email. But she has put a rush on delivery.

DONE, right? NO

The second DME company handles only the incontinence supplies. After a growth spurt a size change was required. Upon no receipt of supplies, I reached out to my daughter’s PCP to see if they had any feedback. Nada. So I took another break from work to call this DME company to find out why the stall in supplies and when to expect the updated size. Found out they have not been paid from over 9 months ago so they could not seen any more supplies out to my house with lack of payment. They requested an EOB from the primary insurance. After work and on my personal computer where all my passwords are saved, I was able to send them the explanation of benefits stating that diapers are not covered by them. But earlier that day I reached out to Medicaid case manager asking why the lack of payment causing the lack of supplies. She explained per her computer they have been authorized for the entire time. AKA there’s a breakdown in the system that my daughter is falling victim of.

If that isn’t enough, There is one more DME company.

This last company provides adaptive equipment. First off I failed to have faith in my daughter and her Houdini capabilities and COMPLETELY underestimated her. In under 5 months she has learned how to get out of her updated stroller, car seat, and medical safety bed. So after me stating we need an update in equipment This has taken over a week with greater than 7 phone calls to only be narrowed down to me taking off another day of work for them to come out of the house, what for, no one could tell me specifics.

All of this may be simplified down to 1 DME company if I only had 1 insurance company, but my primary insurance has specific companies they work with and not all DME companies offer all the supplies every child needs.

My gripe is can we please streamline this system! SERIOUSLY. Above was exacerbated this week from the updated change in safety concerns, but the other 2 DME’s remain typical: monthly orders, follow ups, and ensuring relevant MD orders. All of this time is tedious and the calls back n forth during business hours enhance the challenge. Note to DME companies: NOT all who require DME supplies are sitting at home jobless.

The other day I heard the comment, “Your daughter is not acute enough” from someone in the medical field. Lets just break this down. Acute is something that is relatively a short term situation of less than a year.  On the other hand chronic is long term, life sustaining.

When hearing this having a child with multiple chronic diagnoses was a slap in the face, that my child is unworthy of their services because I have kept my daughter safe and healthy through the challenges of 2020. Many have no idea the drama and mental anguish raising a special needs child is. The abundance of specialists, doctors, patience is overwhelming.

I am thankful for my child’s chronic issues are only acutely exacerbated, but does that mean she doesn’t deserve support as she is not ‘sick enough’? How about the family, do they not deserve the reprieve knowing that their child is safe while receiving specialized services? Or is this, all these specialties no able to be to my child’s avail because some 20 something who doesn’t have kids, working in a cubicle have any empathy for the specialized needs on a daily, often hourly situation special needs children require.

These questions are situations which many of us face. They are valid and you are not alone. Our children deserve unity and support. But so do we. Until recently my 7 year old and I have been doing all of her services by myself. I have just recently been receiving help and not having my daughter go to a traditional daycare, with continuous “we can’t handle her any more” situations.

During 2020, I have been full time employee with a new set up while adding to my responsibilities – day care provider, teacher, PT, OT, SLP, Dietitian, ABA, RN, MD, Ambulance, and mom. I know I am not the only one who needs a vacation from life after this past year. So the doors of opportunities getting slammed in my face when I know my child qualifies for and deserves is hear breaking for many reason.

The exhaustion felt by families with special needs children is all consuming. This exhaustion is mental, physical, emotional, and relational – isolation is real. Please be mindful of the added parental environmental defense mechanisms, they too are not acute, but chronic.

congenital-harmony.com/acutevschronic

How to celebrate a birthday without family or friends. Special kiddoes not only have a lack of understanding of celebratory moments, they often lack the environment persons who surround them with an acceptance level of them and their needs.

For instance when I think of a birthday party. I instantly imagine cake and presents along with smiles and giggles. Having a tube fed child, they don’t taste the sweetness of the cake. Or having a child with limited mobility often ostracizes them from fellow kids who want and able to romp around.

Many people do not understand the minute my minute time is like with a mentally or intellectually delayed kiddo. Here is a small clip of a camping trip Katelynn and I went on. Many of the videos became corrupted, but the few minutes worth of Kate’s repetitiveness and lack of awareness of her own need is present. Please enjoy, and be kind to a fellow stressed out single momma.

What does ‘keep it at room temperature, actually mean?

It is defined as the temperature between 59-77 degree Fahrenheit or 20-25 degree Celsius. In most situations this remains a comfortable temperature. When dealing with medications or medical supplies, one must consider their natural environment. Note your outside temperature averages and humidity levels are both relational to the efficacy or usability of medical products.

Winter season, for many the average environmental temperature remains below the acceptable room temperature for medical supplies and medications. Plastic items become hardened and unusable. Medication becomes less effective or changes is efficacy rate.

The same thing required consideration for the for the inversion of seasons. Humidity also is relational. In humid climate, plastic tubing tends to “stick” or become “sticky.” For myself, I live in Florida where on a typical seasons go as follows – a 2 week “winter” and the remaining time is hot, hotter, or OMG weather.

Things to consider if you live in extremes or if traveling to escape the extremes:

– a cooler

– thermal bags

– cold/hot packs

– rice (uncooked) placed in a sock can be placed in micro or freezer and used as packs

– a generator/inverter (solar or gas)

– mini fridge/cooler that plugs into your car

– maintain extra water: spring/filtered/distilled for machines and dehydration

Hint for those in hot weather: One of my best thermostat is my kitchen coconut oil. I use it for cooking and if it starts to melt it is too hot for supplies. Coconut oil melts at 78 degree Fahrenheit.

American Sign Language (ASL) is a language utilized for more than just the deaf in the new millennia. ASL is a language that originated for the deaf in 1814. Today this language has also explored by those families with children who are diagnosed with aphagia or commonly known as non-verbal.  Aphagia is broken down to 8 different clinical categories, so families with any category of the aphagia diagnosis are determined to find options. ASL provides one.

               As a fresh widow, desperate to communicate with my soon to be two year old. I purchase a product that provides, education, music, fun, play, and language. My daughter and I bonded over the fun we shared during these learning lessons even when she remained not expressive at that time.

               Fast forward to IEP time. For those who are unaware. IEP is an Individual Educational Plan that is a detailed plan of action to assist with your child’s learning. But don’t let me fool you by the over-simplification. You must advocate with a capitol A in that meeting. No one knows your child like you do. The professionals may have 3 hours a week with your child, but you have weekends, sleepless nights, years beforehand, experience for what has/has not worked from the requests of previous professionals. You have withstood the tantrums, recessions, and tears over all the changes forced by the degreed personnel who are never there to comfort your child, only complete their duty.

               Writing this gets me all fired up. Maybe that is why, this last IEP was dropped on me via a surprise attack. The school system thought they would catch me off guard. However, as many of you, I know my child’s diagnosis and playbook better than they know the route they drive to and from work to educate my child.

               When I was asked if English was my daughters first language. I responded with no. I was hit with major resistance! They refused to put ASL as her first language, merely offered an interpreter. Furthering the declination with statements that ASL is only a variation of English and will not be continued as part of her education due to they do not feel it is worthy of her IEP.

               As a mother, I have the right to teach my child any language I chose. Many countries teach children multiple languages as it is mandated. But here, in my state, I am told that all the effort I have put into communicating with my child has been “worthless” and it was exclaimed that she is in need of a regular curriculum to excel. I intend to fight this, but for now, as I was bamboozled, I have to go with it. In the meantime, I must prepare for yet another regression. I pray this is a warning for others in the same situation, be prepared to fight for your choices and rights for you and your child.

During this time of familial incubation and craze Katelynn and I have been having a day of laughing, playing, signing, and singing with Rachel Coleman. Her muse and daughter – Leah along with playmate Alex help to entertain while participating in a captivating educational program on ASL (American Sign Language).

The tunes are catchy and flavorful. So binging on them is cool for both parties. If I have to be honest Katelynn was more excited in the music than with the actual sign configurations. Me, I was just enjoying watching my daughter displaying her carefree spirit. Because dancing is fun, work – well its work. Every parent knows that a day of “happy kid” is a great day.

Many special parents see only the challenging parts of our children as we are maintaining adulthood. Seeing the non-fit throwing, happy, active child like typical parents is something to be cherished. I purchased the program Signing Time (https://www.signingtime.com/) about 4 years ago. Originally, this was played while Katelynn was connected to her tube feed to help her sit still and limit the chances of her pulling out her mic-key button or disconnect the tubing and feeding the floor – AGAIN. Now its for our Mommy Daughter happy educational times.

Today my travel companions and self traveled to St. Pete aka St. Petersburg, Florida. It was an usually cold, high 40’s, kinda day for it being the first weekend of March.

Surroundings

Together we attended the Paw’s for Buddy gathering held by the Buddy Cruise group https://www.buddycruise.com/. The park was sufficient in size, cabanas, caged off areas for kids and others for dogs. Unfortunately, it only had single lavatories, nothing to change diapers in sufficiently, so round two was accomplished in my vehicle. The grounds had some rubber mixture under the swings and the grass was easy to push a stroller or wheelchair through without struggle.

Vendors, tempered the cold and joined in the fun. They offered their version of the best treats, for those with paws and feet. A few surprise visitors made an appearance: the Buddy Cruise mascot, the Paw Patrol characters, along with St. Pete police and K9.

Fun

There was a Paw contest which we all walked around while our fur babies strutted their stuff. The judges elected this cute little tarrier type dog who was maneuvered by a wagon which looked like a Cinderella coach, donning her cute dress to be number one. Princess, my fur baby took the most unusual. She is a Saint Bernard – in Florida. Yes, I’m crazy! The prizes were cute little baskets filled of goodies. However my daughter, Katelynn decided she wanted the toys for herself. Princess didn’t mind. Puppy love, its the best.

I am Nicole, a proud mother of a child with congenital anomalies. The struggle is real! You are not alone.

This is intended to bring to light the secretive list of services that are out there for us. Meanwhile noting my family’s experiences with them. Many I talk to mention, “if someone had told me about this service earlier.” So that is my very intent…to find and announce the service.