by Heidi Padilla
I am a mother of three children ages 23, 13, and 8. I am a certified elementary teacher, a certified Montessori teacher, and I was a stay-at-home mom for about four years. Currently, I have been teaching nearly full-time since early 2014.
I began my teaching career twenty six years ago, and could speak to you from that experience. However, I am primarily speaking as a mother, because it is in this role that I found my strength, courage to persevere, and found hope.
There is an unspoken language- an understanding among parents – that transcends all differences in the human experience. If you are a mom or a dad, you have the right and obligation to speak as the expert on your own child, and others will listen.
If you have one child, or several children, your journey is not better or worse. You are the parent, the rock solid foundation of your family. You are learning, evolving and growing along with your children.
You want the best for your children. You have valid questions, and you want to know where to find answers.
My Sons struggle with ADHD, a TBI, and Anxiety
My parenting journey is shaped by my 23 year old son’s ADHD, and suffering a traumatic brain injury in his junior year of high school. He continues to have memory loss and headache pain related to that injury.
My thirteen year old son has a way of reading my mind, emotions, non-verbal communication and accurately sensing social cues. He was advanced up a grade level starting in first grade. He loves school, but began refusing to go to school last year due to overwhelming anxiety, unrelated to school.
So, I did what any sane parent would do: I called doctors, therapists, had meetings with teachers, administration, and I talked to everyone I knew until I found my answers. I made a plan, and I grew my village far and wide.
My Daughter has Sensory Processing and Feeding Issues
My eight year old daughter has a Sensory Processing diagnosis. Since she is my third child, I knew right away that something was not developing normally for her. From 3 months to 18 months old, she had to be kept upright to prevent the breastmilk from coming back up accompanied by painful reflux.
I brought a change of clothes for her and the rest of the family every time we went out because she would spit up most of her meals on herself and everyone who held her.
Teaching her to self-feed toddler foods was a combined effort. One brother would blow bubbles, the other would read book, and I would spoon feed her the right amount of pureed food on the tip of the spoon, right when she opened her mouth in awe of a bubble floating by. We did this feeding routine 5 times a day until she was 2 ½ years old.
It wasn’t just the daytime feedings that seemed atypical. She had difficulty falling asleep and woke up crying loudly exactly two hours after she fell asleep. It was a race to get upstairs and to her crib before she threw up in her hair, bedding, and on the “must have it every night” favorite baby blanket.
I continued to encourage her independence. I did my best to teach her to eat like a typically developing child at each stage of development. I brought her to the doctor and asked why she had these difficulties, and was repeatedly told she would grow out of it.
Prescription Prevacid* provided some reflux relief, but reduced her sense of hunger, which is problematic for a child who associates pain with eating. Later, at age 5, the naturopath recommended DGL (deglycyrrhizinated licorice)* before each meal, and this helped the most.
I Sought a Feeding Evaluation and the Doctor Didn’t Believe Me
One day, sleep deprived but hopeful, I loaded my three children into the car and took my daughter to Children’s Hospital for a feeding evaluation. I thought, this was the Holy Grail of help, and everything will be okay now.
The provider observed me feeding her stage 3 (lumpy) baby food with a spoon at 2 ½ years of age, saw her gag on it and vomit the rest of her last meal, and said, “Everything seems to be working just fine!” What?!? I thought, sure- if this was a ten month old baby!
I realized I had to learn to observe her closely, articulate my observations, and ask the right questions and find the right provider for her. I was sent home feeling weary and frustrated. It was a warm spring day, and the heat and sluggish traffic on I-5 lulled me almost to sleep at the wheel for the first time. I could have crashed with three children in the car.
I called the hospital, politely demanded a specialist, and was placed on a long waiting list. The nurse advised to give the child 0.5mg Melatonin, to help everyone sleep. It was helpful for sleep onset, but she still woke up within a few hours every night.
I wanted to understand, to resolve her difficulties, to give my daughter normalcy. I needed her doctor to believe me, and do something.
Her regular pediatrician continued to tell me, “She looks great, is developing normally, you are a great mom, she should probably gain 5 pounds, and see you at the next check-up!” This was an unacceptable response to a three year old whose main nutritional needs were met with expensive supplements mixed into pureed baby foods and goat milk.
I Was Persistent and Determined to Find a Solution
I researched, asked questions, and I did not give up. Yes, I was tired, but also tolerant and determined to love and care for my little girl according to her needs. In 2014, I moved and began to create my new support system made up of friends, a new doctor, a naturopath, and an occupational therapist (OT).
I finally found answers once we met with an OT at Bothell Pediatric & Hand Therapy. I learned that my daughter has Sensory Processing Disorder and this includes feeding difficulties as related to sensory reactions to the sensation of food in her mouth.
This finally explained why she gagged and rejected so many foods. I was so relieved, I cried! My daughter loved her OT, the exercises, and tried new foods. I learned how to continue practicing the therapy exercises at home. I learned to adjust my mealtime routines and expectations so she felt calm, encouraged, and willing to eat.
I Gave Myself Permission to Feel All of My Emotions
I have learned that acceptance of the situation gives me the permission to feel okay when things are still unresolved. I learned that it is okay to feel the full range of emotions that has accompanied me on this journey.
Of course we need to regulate ourselves and keep our emotions in check so we can help our children regulate their own emotions, but don’t be afraid to feel.
I am still learning about this disorder so I can teach my daughter about what her body needs and how to care for herself more independently. It doesn’t seem fitting to say she has “feeding difficulties” at eight years old.
Now, I can say it’s AFRID- Avoidant/ Restrictive Food Intake Disorder is the newest eating disorder diagnosis in the DSM-5. This may provide parents with more support for their children whose “picky eating” is detrimental to meeting their nutritional needs.
As a Special Needs Parent, I am Stronger Than I Think
If you also have other children with needs that seem to stretch you beyond your belief in your ability to handle it all, please understand that this is normal. We as parents of special needs children are often too hard on ourselves.
I highlight belief, because it is our mindset and emotional well-being that will determine the direction we take as we learn new skills, and unconditionally love, guide, and respond to our children. Have hope, be persistent, build your support system, and know that you and your child are going to be okay.
If you’re seeking support for your child’s feeding issues, ADHD, or Sensory Processing Disorder, BPHT can help. Call 425-481-1933 or visit our Intake Forms page to sign up for an Initial Evaluation of your child.
*This article was contributed by a parent, with the intention of helping and inspiring other parents of children with special needs. The author is not a medical provider. Medications and supplements mentioned in this article are based on the author’s personal experience and should not be considered medical advice. Please consult your doctor or pediatrician for advice on your child’s individual diagnosis and medications.