Food Protein-Induced Enterocolitis Syndrome (FPIES)

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    Just 5 Minutes of Peace, Please

    Just 5 Minutes of Peace, PleaseBy: Gail Hamblin     Here it comes. I feel the wave of stress reaching it’s apex as simultaneously my youngest is yelling from the bathroom that she needs help wiping her back end, the middle child sneezes a giant mess to which he can’t wipe because of his diminished self-help skills, the oldest needs homework help right this instant, the dog is eating someone’s brand new sneaker, the chicken cooking on the stove is burning and the hubby is nowhere to be found. These moments occur more frequently than I would like to admit.  My fists clinch and I feel all of my muscles tensing up.  Sometimes there is a loud noise emanating from my mouth or I mumble as I prioritize all the wrongs that need my attention at the same time. I know most moms know what I am talking about. But, our house is a little different. We live with therapy two hours daily, medical appointments galore, feeding disorder difficulties, Down syndrome, autism, FPIES, and a host of other diagnosis.      Some days it is all too much.  I grit my teeth, try to suck it up and move forward. I don’t have to be happy about it.  But, I have to move forward.  In these moments, I have a recurring phrase that I say to myself and I know it comes out in mumbles too.  “Just five minutes.”  Can I get just five minutes to myself of peace and perfect alignment of all things in my view? It is not much to ask I try to tell myself.  I am a good mom. But, here is the kicker ladies and gentleman: life is not fair. Life has never been fair and it never will. If it were fair, no child would have to suffer. I would not have to see my special needs mamas lose their children one by one to some disease, cold or diagnosis. I try to tell myself that I am lucky because I still have my children here with me. Who am I to complain about trials and tribulations when there are dear friends who can not hold their babies? I try not to complain but I don’t always succeed. I get through the sleepless nights of care-taking by telling myself this is temporary. This season of life will be over soon and I will miss the time they were little. So, for now, I need those five minutes every once in a while to snap me back into reality, give myself some grace and try to handle the load better the next time the wave of stress comes near. Couldn’t we all use just five minutes?

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    A New School Year, A New Year of Teachable Moments

    “Mom, are you glad that I’m not disabled?” says my

    six-year-old son with NVLD; whose disability apparently remains invisible, even

    to him.

    I cringe while recognizing the need to have more conversations

    of inclusion to combat social culture’s influence of stigmatized diversity.

    Then, I try to seize the teachable moment:

    “Honey, it wouldn’t matter to me if you had a disability.

    Everyone has differences; those with disabilities may just face a different set

    of challenges than you’re used to. I would love you no matter—“

    “I know, I KNOW, Mom. You say that all the time” he

    interrupts with an annoyed tone. Interruptions are ever-present in our home, as

    NVLD can make it difficult to recognize and understand patterns, including those

    used in social communication.

    Concerned that he has missed “the big picture,” another

    common manifestation of NVLD, I continue with “you know how each person is

    really good at some things and finds other things more difficult? They may just

    need more support or to work extra hard to do those difficult things. But do

    you think they still might enjoy a friend or someone to be kind to them?”

    He agrees.

    Fast forward to another day: I’m accompanying my son to a

    therapy appointment at a nearby Pediatric Hospital. Even though 1st

    grade was easy for him, tiny mistakes are still very difficult for him to accept.

    Treating his anxiety may give him the needed confidence boost before academics

    becomes more abstract. As we approach the Hospital, I suddenly remember that we

    may encounter several children with a variety of needs and abilities, and that

    I should remind [prompt] my son of socially acceptable behavior.

    “Now before we go in, there may be children with differences

    inside, and instead of staring or asking questions, you can—“

    Interrupted again, my son blurts out “you mean there could

    be someone without an arm? Or without legs? If I were to see that I think I

    would freak out.”

    Cringing once again at my failure in properly educating my

    child, I respond “Well that’s why we’re talking about it now. It’s not

    appropriate to freak out. Instead, if you find yourself feeling unsure of what

    to say or do, just be friendly. Just smile and wave because maybe that child

    wants to be your friend. Maybe they like Pokémon, or video games, or just being

    smiled at.”

    It turns out there were no children inside (I think we were

    the last appointment on a Friday evening), and I tell myself that I need to

    find more opportunities to expose my son to human diversity. To normalized

    diversity. To make empathy and inclusiveness a part of everyday life.

    Teaching inclusiveness to a child who struggles with social

    perspective-taking can be a challenge, but we’re showing improvement in our

    home. NVLD has granted my son very high verbal abilities, so we use his

    auditory learning style to our advantage. As long as explicit verbal prompts are

    given, he understands completely, and his highly sensitive and empathetic core

    is activated. And while we haven’t directly discussed his NVLD (because

    technical discussions about visual-spatial perception and abstract pattern

    recognition doesn’t yet seem age appropriate), we have had many conversations

    about his accompanying high sensitivity and worriedness. We talk about how

    feeling more sensitive and worried than peers can be difficult sometimes; but

    notice how those feelings pass and everything becomes OK again. We talk about the

    positive traits of feeling sensitive or worried; high sensitivity means you can

    care very deeply, and notice exceptional details. We talk about how Mom and Dad

    live with sensitivity and worries too, and that we’re a team.

    As second grade approaches, I feel both excited and anxious.

    I know my son has friends. I know my son will do well with the school routine.

    I’m pretty sure 2nd grade content will still come easy for his high

    ability of rote memorization. I’m anxious because whether he is assigned a

    nurturing teaching will impact his fragile outlook on school and

    self-confidence. I worry whether to label him as having anxiety or NVLD to his

    teachers, for fear of unhelpful stereotypes (including me as just another

    Helicopter parent). I worry that even if he does begin to exhibit more

    disruptive behaviors, the underlying reasons will not be understood or

    appropriately treated, as NVLD is not yet recognized as a condition to receive

    protection under IDEA or 504. Second grade is also the year when students are

    identified for Gifted and Talented tracks. While such a track might cater to

    his verbal abilities, it would also be ideal to have accomodations or

    modifications in place to chunk and scaffold abstract content; and plenty of Universal

    Design for Learning (multiple strategies for content representation, assessment

    of understanding, and engagement). And I hope that his teachers recognize his

    creativity. His creativity has won him competitions and awards.

    Most recently, I learned that my 9-month old son also has an

    invisible disability: FPIES (FPIES). A

    rare and delayed form of food allergy that is not thought to respond to epinephrine.

    Instead, his food trigger impacts his gastrointestinal system and accidental

    ingestion would likely mean a trip to the emergency room for fluids.

    My six-year-old is upset when he says “Poor brother. He

    can’t have birthday cake or cookies when he goes to parties. It’s not fair!”

    It’s endearing that my six-year-old can take his brother’s

    perspective, and show concern. I reassure him “You’re right, it’s not fair. But

    it will be OK. It just means that we’ll begin making eggless cake, cookies,

    waffles and more. We’ll bring him a safe cupcake to eat and enjoy at parties.

    We’ll work extra hard to make sure he isn’t put in danger by reading labels and

    advocating for him.”

    And next time, I will highlight the positive traits that

    will develop from his brother’s disability: he will learn patience, he will

    learn flexibility, he will learn resilience, he will learn vigilance, and he

    will learn empathy. It won’t be easy, and it will come at a cost of many

    misunderstood toddler tears, but it can be done. With time, both boys will

    learn that the word “disability” might be better understood as “uniquely abled.”

    Here’s to another year of teachable moments!

    Post

    How do you deal with #FoodAllergies during the holiday season?

    The holidays can be especially challenging for those who have food allergies. Food is everywhere-- and the invites to attend parties and dinners can get overwhelming if you have reactions or sensitivities to various foods. What's one way you don't let your #FoodAllergies limit you during these times? #EosinophilicEsophagitis #FPIES #FoodProteinInducedEnterocolitisSyndrome #MastCellActivationDisorder #RareDisease #EoE #MCAD

    3 comments
    Post

    How do you deal with #FoodAllergies during the holiday season?

    The holidays can be especially challenging for those who have food allergies. Food is everywhere-- and the invites to attend parties and dinners can get overwhelming if you have reactions or sensitivities to various foods. What's one way you don't let your #FoodAllergies limit you during these times? #EosinophilicEsophagitis #FPIES #FoodProteinInducedEnterocolitisSyndrome #MastCellActivationDisorder #RareDisease #EoE #MCAD

    3 comments