People First, Please

My 1st post dealing with a sensitive subject. I often want to correct others use of language, especially those in the medical field. If you know me well, you know I choose my words carefully, always have. Language has so much power, the spoken word shapes, defines, manifests.


I cringe when I hear people refer to Aero as a 'Downs' or say Down's kid, child, baby. The proper use is Down syndrome not Down's (no apostrophe s). Aero is first and foremost, a person. Having Down syndrome or Trisomy 21 should not define him by placing the syndrome before his name. Aero is a child with Down syndrome, not a Down syndrome child. Do you see the difference? 

Perhaps Wikipedia does a better job;

People-first language is a form of linguistic prescriptivism in English, aiming to avoid perceived and subconscious dehumanization when discussing people with disabilities, as such forming an aspect of disability etiquette.

The basic idea is to impose a sentence structure that names the person first and the condition second, i.e. "people with disabilities" rather than "disabled people", in order to emphasize that "they are people first". Because English syntax normally places adjectives before nouns, it becomes necessary to insert relative clauses, replacing, e.g., "deaf person" with "a person who is deaf" or "asthmatic person" with "a person who has asthma." Furthermore, the use of to be is deprecated in favor of using to have, i.e. "a person who has a hearing impairment" over "a person who is deaf".

The speaker is thus expected to internalize the idea of a disability as a secondary attribute, not a characteristic of a person's identity. Critics of this rationale point out that the unnatural sentence structure draws even more attention to the disability than using unmarked English syntax, producing an additional "focus on disability in an ungainly new way".

Almost

I was just thinking this morning how Aero has kind of stalled on 'milestone making'. He is multi-tasking quite a bit right now (navigating this whole nutrition by mouth thing, getting into sitting position on his own, hunting down every available scrap of paper in the house within his reach and immediately shoving it in his mouth) and apparently babies are more one trick ponies.

However, later this afternoon, I was washing dishes and glanced into the living room to see this....

The boy is feeling out the whole 'quadruple' view (fancy physical therapy term for on all fours). The rocking motion is pretty advanced stuff for him at this stage of the game. So exciting!! He plays with it a bit and than decides to try getting into sitting by himself. That is hard! Try it for yourself. Sit on the floor from laying on your back and than try to think how you would show a baby how to do it. His physical therapist demonstrated for me multiple times on multiple visits. Finally, I figured out how to coach him and he is almost there.

At the end, he decides to reward his efforts with some 'bunny love'. Wouldn't you?

Parent PhD

I am worried about my sweet munchkin. I think he may be hypothyroid. Thyroid challenges are common in children with Trisomy 21. Knowing that and a whole host of other problems that may or may not occur keep my wheels constantly spinning. In the past month I have dived really deep into researching Down syndrome and the discoveries shake me. Here is a brief laundry list of the things that children with Down syndrome have a higher incidence of experiencing;

-leukemia
-hypothyroid
-celiac disease
-macular degenration
-respiratory infections
-compromised immunity, higher incidence of cold and flu
-ear infections, very tiny ear canal leads to fluid build up
-sleep apnia
-alzheimers

Why do I think Aero may be hypothyroid? Lately, his activity level has dropped drastically. I sit him on the floor to play and all he does is sit and ....nothing. I can engage him to empty a tupperware bin of toys that I have packed full. He dumps it and that's it. No squeals of delight, no excitement. If I leave him alone for a bit, to discover, roll, or whatever he begins a low, throaty whine. He stops whining only when I pick him up.

We have his 9 month check up soon. I have a whole list of questions for the pediatrician. Thing is, I don't think they will be satisfactorily answered. Why? The other thing that I have discovered in my research is that the medical field is very uninformed regarding Trisomy. They have a tendency to fall back on generalizations. It is such a sweeping spectrum of a syndrome that if you don't have a few children in your practice with Down syndrome, why would you take the time to stay current? That is the parent's responsibility. You must become a parent PhD in all things Trisomy...more on that, later.

Buddy Walk, Our 1st

Made a trip downtown Seattle on Saturday because I realized that if we were to have rainy weather for the Buddy Walk on Sunday, all Aero had was onesies or rompers and no shoes. Wanted to get him his first proper pair of pants. Found these cords at Old Navy. Thought they would swim on him but actually, I could barely get them over his thighs. Doesn't he look handsome?

Checking out the Buddy Walk 'all access' armband. Perhaps he is sizing it up as to its 'chew worthiness'. He is so attracted to all things paper, beeline straight to the mouth.

All access arm band swag bag included a Shrek watch. Big hit with Mr. Oral.

Beautiful, every one wants to hold the baby.

Aero's guardian mom, Audra. Aero's bestie friend and momma to be in November.

That's Chris to my right. You know that saying, "it takes a village to raise a child". Chris is our village. She is an amazing support person for us and ....I just get choked up conveying everything she has done for our little family. She is good, good people.

Jemma is wise beyond her 10 years, old soul this beautiful girl. She visits Aero once a week and is such a conscience caregiver. Aero's safety and comfort are always forefront when she is in his presence. Amazing.

Sacked.

Such an inspiring day. Thank you team Aero.

31 for 21

First post on the committed path of a blog for every day in the month of October. The goal of 31 for 21 is to raise awareness for Trisomy 21, more commonly known as Down syndrome. Trisomy 21 refers to three chromosones (tri-somy) on the 21st chromosone. This extra chromosonal material is therefore present in every single cell of Aero. How this affects our life will be the fodder for this month's posts.

It is 9:43 pm and I had thought this would be a good time to post each evening. I am already having 2nd thoughts regarding that decision. I am freakin' exhausted by this time of the day.

Tomorrow we will participate in Buddy Walk which is another awareness endeavor for Trisomy 21. They are held in most major cities and attended by members of the Down syndrome community, their families and friends.

I am bracing myself for an emotional day. I am scared. I love my son with a fierceness that I did not think possible. I worry and fret over little and not so little things, mostly involving his future and my part in laying a solid foundation so he can enjoy an independent life if that is his choice. Tomorrow, I may get a glimpse of Aero's future.

How much of what I see will inspire me or add fuel to my worry pyre, I don't know at this point. What I do know is that all I can do is continue down this meandering, mysterious path and allow my heart to just grow bigger and bigger.

amazing A

another amazing week with Aero

late summer~early fall contemplation, relaxation

does the boy take a bad photo?

befriending monsters

oooooo, time for sweaters!

bouncy, bouncy

catching zzzzz's with eve

sweet & savory

Where are we with feeding? Or, where are we at with feeding therapy? 'Cause we definitely are not feeding. Not enough consumption. This photo was taken when Aero's feeding therapist was working with him in gently reminding him to swallow. His ritual is to take in food, feel it around his mouth for a bit, spit it out.

Food is a game, exploration, novel sensation for Aero. As he receives his nutrition via his g.i. tube, he really has no incentive (no real hunger pains) to eat orally except for the fun of a new experience and flavors.

Thankfully, he is no longer oral averse. He will happily try things out as witnessed by his gnawing at this very ripe, super soft avocado. 

And, this heavily buttered bagel. I will only let him lick at these types of foods. He is not practiced enough in the art of chew and swallow for foods beyond the consistency of puree. He needs to gain more coordination and confidence. Yet, he is craving more substance, texture, tingle beyond puree. 

3x daily I sit him in his highchair for food fun. Some days are more encouraging than others. Today, not so much, two licks tops at each feeding. One challenge that is a constant puzzle is what to feed? Through much trial & error I have discovered that Aero is not a fan of 'sweet'. Maybe 'cause he has experienced way too many vomits of 'sweet' (breast milk is incredibly sweet). And given his reaction to Nate's squash soup and my potato soup, it seems his preference is for savory. Ever find savory baby food without grains? If it is savory it always has a grain mixed in and I don't want to feed Aero grain until his digestive system has matured (babies do not yet have the enzyme to break down grains until after year 1 or so). I am chopping veggies, steaming veggies, whirring them in the food processor and following up with a high volume whip in the blender. Lots of effort for two bites. I am hoping to stumble on that magical piece of produce that ignites his taste buds and the spooning is fast and furious.

Drinking...he watches me sip water all the time. I will tip my glass to his lips and he gives it a go. The Aero technique is to stick tongue into glass and lap. Not effective for high volume consumption. This is where we need to do a lot of work with coordination and strength of swallow. The over the moon goal is to see him drink down 2-3 ounces in 2-10 minutes. Right now, we are chugging about 1 tsp in 24 hours.

Here is the conundrum, Aero will not really consume any more than what he currently takes in which on a good day is 15 ml of puree. He currently receives 700-750 ml of breast milk via his tube daily. How will he make the jump from 15 ml to 700ml? Controlled starvation. More on that later, stay tuned.