This is our daughter, Michaela, on her first day of Kindergarten in 1996. It’s been a long road of education since then!
We didn’t know that Michaela would come to be diagnosed with several learning disabilities, or that she would also have multiple broken bones from osteopenia caused by celiac disease, or that all the stomach aches she had for years wasn’t because of anxiety about school, but rather from a mast cell disorder.
We were new parents to a second child, Morgan, who on that day was just 7 months old and yet to have his first allergic reaction.
I hear from so many of you who manage children with food allergies in addition to diagnoses of Eosinophilic Esophagitis (EoE), Celiac Disease, Attention Deficit Disorder, Dyslexia, Autism and more. Sometimes all of these diagnoses are in one child, or they span multiple children – all with different needs, and many times with different food allergies! It’s not easy on us parents, and it can become very disheartening if you’ve heard messages from teachers or others similar to what we’ve heard, “Don’t expect too much from her.”
My husband and I did and do expect a lot from our two children. We expect them to listen to their bodies and to honor their physical needs – to carry EpiPens and Benadryl always, to eat safe food always, and to take their medication appropriately and consistently. We expect them to listen to their brain and to challenge themselves academically – to try their hardest even if they receive a grade of a “C” or worse, to go to school every day and to try to learn. We expect them to listen to their heart and to follow their passion in life – to be of service and helpful to others and to treat others with respect even if they haven’t received that in return.
We encourage them to find a higher power in their life that brings them joy and peace. We encourage them to love and value each other and to spend time together. We empower them to self-advocate for their needs with their friends, family and especially at school. We empower them to question the adults in their life, because sometimes even an adult doesn’t know the safe food to feed them.
Mostly, we enjoy them. We enjoy their sense of humor; we enjoy laughing and laughing until we cry; and we enjoy the life that all these challenges of so many diagnoses have provided to our family. All of these things together have made our children who they are.
When I heard a psychologist say to me “Don’t expect too much from her” when my daughter, Michaela, was in 3rd grade – I didn’t have the 22+ years of parenting under my belt that I do now! I had just heard a list of diagnoses a page long from the experts in a “child study” the school performed on my daughter. We knew she was having difficulties in school, but even that list of diagnoses the experts provided didn’t include celiac disease or a mast cell disorder which she was diagnosed with later.
She struggled for years with dyslexia, for which we got her a reading tutor; ADHD, for which we determined to not medicate her but instead to completely change her diet away from foods with preservatives, colorings, sugar and caffeine; and an auditory processing disorder, for which we obtained a 504 Plan, along with the other two conditions. This combined effort still didn’t create ease and comfort for her to attend school. It took until high school to get the diagnosis of celiac disease. By that time, the enamel on her teeth had worn off, and she had suffered multiple bone breaks in her arms and toes! She was in college before she got the diagnosis of the mast cell disorder.
Michaela expected a lot from herself despite everything that she was experiencing. We didn’t focus on what she couldn’t do well. We helped her to focus on everything that she could do – like laugh at herself when she made a mistake, think outside the box on school projects, intuitively know how others were feeling, and encourage her to embrace being different in her thinking processes.
I remember when Michaela graduated from high school. We were on our way to the graduation ceremony when she said, “I’m so glad I’m done. The last good year of school was kindergarten!” If that doesn’t make you feel terrible as a mother! Yet, she signed up to go to college at a local community college, and found that the college lifestyle fit her needs much better. She could schedule her classes later in the day, when she was ready to go to school. She could focus on an academic area of her choice – Communications (she was always good at talking, having gotten many infractions for chatting in grade school!) She started to understand that she was good at school when she could ‘do school’ the way it fit her.
She transferred to a larger school, the University of Colorado at Colorado Springs (UCCS), for her last two years. She didn’t like this school nearly as much since the classes were larger, and the professors not near as caring. However, she kept going, while working two jobs, and graduated in May with a GPA of 3.3! What a wonderful accomplishment for a child with so many diagnoses!
If you’re wondering if your child can do this – I assure you they can! Take it one day at a time, love your kids, be proud of their accomplishments however big or small. Don’t let a few diagnoses alter your hopes or your child’s hopes for the future.
It makes me think of Kermit the Frog who lamented being green, which is not unlike lamenting being diagnosed with food allergies, celiac disease, ADHD or any other thing. In the last stanza of the song, he sang:
When green is all there is to be
It could make you wonder why
But why wonder why wonder
I am green, and it’ll do fine
It’s beautiful, and I think it’s what I want to be