Special Needs Parenting

Insights into Special Needs Parenting: The Most Dreaded Appointment

Teddy sees a lot, I mean A LOT of people in the medical/therapy field. He has seen specialists in Louisville, Boston, Cincinnati, and we even flew to Arizona for one. He sees a cardiologist, pulmonologist, gastroenterologist, otorhinolaryngologist (ENT), nephrologist, urologist (2 different kinds actually), orthopedist, endocrinologist, neurologist, neurosurgeon, ophthalmologist, developmental pediatrician, regular pediatrician, dentist, regular occupational therapist, regular physical therapist, regular speech therapist, local nutritionist, ABA therapist, feeding specific occupational therapist, feeding specific speech therapist, hospital nutritionist, as well as other past and future specialists such as psychologist and specialty doctors associated with treatments such as the Nemechek protocol and NeuroCytonix. And with all of those doctors come countless nurses, physician assistants, alternate doctors when needed, invasive procedures and tests, etc.  

None of these appointments are fun, but there are some we look forward to more than others (therapy can be fun and we adore some doctors), but can you guess which one I dread more than anything as a special needs parent?  Nope, not the ones that require sedated and invasive tests/procedures, although I hate those for Teddy, and they cause my anxiety to rise.  

For me, the appointment I dread more than anything else is the Hospital Nutritionist.  Did you guess that?  I bet you didn’t!! I will preface this by saying this is my personal experience, and that hospital nutritionists are lovely people and I know are only trying to find the best way to help our children grow, but the nature of their job and hospital policies causes more stress, anxiety, and annoyance than pretty much anything else we do. Let me explain.  You see, there are a lot of double standards when it comes to a child with medical and special needs.  Some can be in your favor, but a lot create undo stress for the parent and child. The nutrition expectation for a child with medical and special needs is one of the biggest double standards around. 

For perspective, when I take my 3 yr old to the doctor, we get a quick few questions about how she is eating and if she is drinking milk and water.  I might explain that she is super picky and that 90% of the time we have to bribe her to eat dinner and that works approximately 50% of the time. They take her height and weight and will say “She is healthy and staying on a curve. It is typical at this age, so this phase will pass.  Just keep trying and get her involved.”  And that is it.  We say thank you and are on our way.  

With Teddy, it is an hour-long conversation at least. I have to list out exactly what liquids and foods I use, including amounts, to either blend for his g-tube or to feed by mouth. I have to explain how I make it and blend it and separate it and store it. I have to provide his exact schedule of eating and drinking. I have to talk about how he tolerates it or if I ever deviated from it. Now that he is eating some by mouth (at least at the moment), I also have to describe exactly how I feed him and how he reacts. They scrutinize weight and height gains. 

Many nutritionists (at least overtly) do not feel people should be blending regular food.  For a long time, it was pushed that blending food would be unhygienic and introduce bacteria, even though the food you blend is the same as the food you feed anyone else, which is never questioned.  There is also this big belief that formula is better than real food (thankfully this is starting to shift), which is the craziest thing I have ever heard (thanks big pharma). You should see some of the before and after photos of older kids who were exclusively fed formula compared to when they switched to real food. The transformation is amazing. So they will pressure you to switch to formula or other prepackaged food the hospital offers or question if you are preparing foods the right way and make “recommendations.” They are being perfectly sweet and nice (at least in my experience) while the inquisition is going on, but the scrutiny of it all makes my anxiety skyrocket, causes me to second guess myself as a parent, and I begin to get defensive. 

Then comes the required blood work that comes after.  The ones that check all the macros to make sure you are 100% accurate on exactly what the guidelines say a human being should be eating. And if anything is off, they call to say now you need to do this, this, and this.  If they tested my daughter, they would see that she lives off of strawberries and PB&J and none of her macros would be accurate, but if Teddy’s sodium or calcium is even slightly off, it is something I have to adjust immediately. 

I mean I get it, medical kids sometimes have a hard time growing.  A lot of medical conditions can cause children to be overweight or underweight.  If your child struggles with food aversions, oral motor skill or swallowing difficulties, or requires a g-tube, then feeding them is a whole different level than feeding your other children and it can be hard. Trust me, the thing I think about the most, out of everything going on with my child, is how to feed him and how to make him grow.  Teddy averages about a pound or two a year and about one inch a year.  He has NEVER been on the growth chart and won’t ever be, due to his medical conditions. I am convinced he will never weigh 40lbs because he can just not seem to break that threshold and trust me, I am pumping that tiny little kid full of calories. It is a constant battle of getting enough calories or causing him to retch horribly due to the caloric density.  It is finding the balance of not giving too much volume at a time, but also not keeping him strapped to a feeding tube the entire day.  It is trying to convince a child who has never eaten by mouth and can only tolerate purees and hates it, that he still has to eat “a well balanced meal.” We are in the middle of a struggle right now regarding his willingness to eat by mouth and I am at a loss of what to do, because Teddy is so complex. The thought of having to explain all this to the nutritionist and feeding team makes my stomach do flips. “Feeding” Teddy over the last 7 years has most definitely caused me more stress than anything else, because it is a constant struggle and for us never seems to get any easier.  

So, while I know they mean well and truly are wonderful individuals, the moment I see the hospital nutritionist appointment on the calendar my heart starts racing, because I know I will be scrutinized and leave that appointment feeling like I am failing to provide my child with what he needs to thrive. Even as I watch my 3 yr old decide she doesn’t need cake and ice cream, just so she doesn’t have to eat her chicken nuggets and peas……

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