I had been a military spouse for just a couple of years, when at 27 years old my first child was born. I had her after having 4 years of infertility and miscarriages.

She was mostly easy and we did not really have any issues. A year later, we had our second daughter, and she was completely different than our first.

She was a fussy baby and I attempted to breastfeed her which I had not done with my first, and she was not taking to it easily.

I gave up and started her on the same formula I had used with my first child. She began puking after eating, and her diarrhea was bright yellow.

All of it seemed to me to be abnormal.

Her pediatrician recommended changing her to soy formula, and I did that. He seemed to have a magic way with her.

He knew how to swaddle her and hold her on her side and she magically stopped crying. I tried his trick at home to no avail. The only thing that seemed to ease her suffering was the vacuum.

If I ran the vacuum, she would go to sleep. I even did this at night, probably not good for my vacuum, but it allowed her and ultimately me to get some rest.

Then at 4 months old, she discovered a tv show called, “Bear in the Big Blue House” on Disney, and she was happy for 20 whole minutes.

I used it a couple of times a day to get some peace and to get something done. 

Finally at 8 months old, the crying ceased, but what we soon discovered was that she was not able to eat anything but pureed baby food and formula.

She only ate sweet potato based pureed baby food, and her nose, ears, hands, and feet all turned orange from the beta-carotene.

I then began introducing more chunky baby foods and she would gag on it and refuse to eat it.

We also began to suspect at this age that she might be allergic to milk proteins.

When Dad was at the store picking up more formula and she was due for a bottle and I only had enough formula for 6 ounces, so to make it 8 ounces I added 2 ounces of whole milk.

The next thing I know my child is lethargic and vomiting.

We rushed her to the hospital and they told me it was probably a stomach virus. I also began introducing normal baby finger foods around 9 months, and she would chew on it and spit it out.

This behavior continued until she was 15 months old. Her pediatrician called it a hyperactive gag reflex. I offered her juice and water in a cup at 5 months old just as I had my other daughter, but even by one year old, she would only drink from a bottle.

he absolutely hated juice and water from the cup, and I never offered that in a bottle.

I was very consistent and always offered it anyway.

Feeling disheartened, I decided to ask for a second opinion.

One of the other pediatricians on staff at the Military Treatment Facility was mean to me during our “second opinion”.

He told me that the reason my daughter was not eating was because I didn’t have a backbone and needed to take away her bottle and formula.

She was 15 months old and unable to eat much food, and still loved pureed baby foods, and was allergic to milk.

We proceeded to stick with the older pediatrician who suggested she had a hyperactive gag reflex, and when she approached 18 months, she was not saying “mama or dada”, and was only eating a handful of foods(cheerios, popcorn, spaghetti, scrambled eggs).

He recommended we take her to speech therapy for both her lack of talking and for feeding therapy.

This proved to be incredibly helpful and within a month she was saying “mama and dada”, and was starting to expand her diet. 

After this process, let me tell you, I felt utterly traumatized as a young mom.

Going to the doctors for anything made me feel like I needed to put on the thickest armor and get ready for battle.

I felt incredibly defeated.

One never knows if the doctor is going to see what you see in your child or if you are going to have to fight with them to get the referrals you think your child needs.

If you are anything like me, you have already researched the entire thing on the internet and pretty much have the jist of what it could be and what resources are out there for that issue.

I know I spent hours looking up feeding therapy. At that time, there was very limited knowledge in this area.

Thank goodness there are so many more available resources now for this issue. She was eventually diagnosed with Avoidant Restrictive Food Intake Disorder (ARFID) at the age of 13, which is a relatively new eating disorder diagnosis that often goes hand in hand usually with an Autism diagnosis, but not always.

My daughter did have some developmental delays and some sensory processing issues, but was never diagnosed with Autism. 

When advocating for your child, remember that as their parent, you know more about that child than anyone.

You are the expert in your own child. Doctors are experts in diseases and childhood development issues, but a parent knows best what their child is doing or not doing.

Keeping a journal of what is happening or what you are seeing that your child is doing can be a really good help to show the doctor what you are seeing and when you are seeing it.

It’s ok to ask a lot of questions and to ask for second opinions, though you may not always get the answers you are seeking like what happened to me, but you are allowed to ask for one. 

I recommend being respectful when approaching the doctor because everyone likes to be treated with respect.

Yet there may be times that it feels like the only way to get through to them is to not take no for an answer. I have been there as well. Doctors are taught, “when you hear hoofbeats, think horses, not zebras”.

This means they must look to the most common diagnosis, rather than rare diseases.

This often can feel like a full dismissal of your concerns, because sometimes those hoofbeats are indeed zebras. 

Being a parent of any child can be exhausting, but having children with special needs has some added challenges.

It is important to take care of yourself and find time to recharge. Creating a support system is important for our own mental and physical health, but it is also good for our children.

Being a military family, this can be hard to do. At various times, I did have different friends who were able to help watch my children when I needed to do things.

I also would use babysitter location websites to find babysitters in my area. I would interview them before they watched my children, and found some great sitters through those websites.

I never had access to respite care, but it can be a good option for some families. Respite care is available to families of children with special needs who are in the EFMP program.

They recently standardized respite care for all branches. 

Here is a list of some resources I would like to share with you.  

1. Find a support group- Exceptional Families of the Military Support Group List. 
2. Military One Source EFMP&Me tool. 
3. Exceptional Family Member Program Newsletter Spring Edition. 
4. TRICARE Respite Care and EFMP Respite Care information. 
5. Babysitter location websites. Care.com and Sittercity.com.
6. Information about ARFID eating disorder diagnosis. 
7. SOS approach to Feeding Therapy https://sosapproachtofeeding.com/

EFM would like to highlight at the 2020 EFMP hearing before Congress, OSN was charged with standardization.  In June of 2023 a new EFMP DoDI was released outlining some plans for standardization.  

*Learn more about EFM’s Mission. or visit their M:M Expert Author Page.