Dear [Family Member/Friend/Relative Stranger/Jackass],
I’m sorry my five and/or seven-year-old son disrupted your…
a) beach vacation.
b) trip to the grocery store.
c) soccer game.
d) restaurant meal.
As you may/may not know, my sons have Fragile X Syndrome. It is an inherited form of cognitive impairment which also come with a form of autism which impacts…
a) how they communicate.
b) their gross motor skills.
c) their fine motor skills
d) their sense of smell, taste, and hearing.
e) their ability to learn from their mistakes.
f) all of the above.
I’m sure you noticed one or more of these when one or both of them started screaming during the…
a) outdoor wedding.
b) estranged uncle’s funeral.
c) family photo shoot.
d) Sunday church service.
I can tell from your comments that you think I’m…
a) too strict.
b) too smothering.
c) too permissive.
d) not spanking enough.
In the heat of the moment, though, it was hard to hear your…
a) self-serving psycho babble.
b) succinct analysis of my flaws.
c) concerns about the state of my [marriage/mental health/recent weight gain, etc.].
Incidents of the type you witnessed used to happen in our family about five days week. This is why we now employ the services of (including, but not limited to)…
a) a specialist in pediatric neurological development.
b) a speech-language pathologist.
c) a special education teacher.
c) an occupational therapist (who in addition to weekly appointments currently has us brushing arms, legs and torso up to 5 times/day).
We have learned that their crying and wailing can be due to…
c) sibling rivalry.
e) who the hell knows.
In addition to your event, one or both of them have stormed out of…
a) Sunday School.
b) Movie theaters.
c) School events.
d) all of the above.
For the record, they have never stormed out of their bedroom. They put themselves in the corner when they grow scared and overwhelmed. One of us has to physically restrain one or both of them when they begin banging their heads against the wall or floor.
We no longer take them to…
a) movies (too loud).
b) sports practices (they can’t keep up with other kids).
c) hiking (when they stop halfway through we can’t get them back to the trailhead).
I’m sorry our five-year-old turned down your offer of…
b) hot cereal.
c) crackers (except Goldfish).
d) cheese (except plain slices).
e) salad with dressing.
f) cooked vegetables.
g) soup, fruit, or meat.
He won’t eat them at home either. He used to adore bananas, peanut butter sandwiches, and tuna fish. Not anymore. He would be happy to survive on cheese slices and popcorn alone.
In the [days/months/years] since the boys’ diagnosis and the [years/decades/lifetimes] before that, I have been trying to figure out my beloved children. Things have definitely improved, due to…
a) medications (they may cause permanent metabolic damage, but lessen the temper tantrums).
b) a change in our expectations (if either needs help putting on underwear, I’m going to damn well dress him).
c) what I hope (keep your fingers crossed) may be maturation and growth in the structure of his brain.
Unfortunately, they are still largely unable to…
a) make eye contact.
b) understand that others have feelings.
c) plan ahead.
d) do schoolwork on his own.
f) stop smearing their fingers compulsively in any food on their dinner plate.
e) refrain from blurting out every random thought either has about poop, snot, boobies, etc…
So forgive me if I seem…
b) frightened for their future.
It’s only because I am.
a) Yours truly,
c) So screw you and your ill-informed advice,