It was easy for me to decide what to share on Judah’s 5 month birthday………why, the 5 senses of course. People with Down Syndrome all have some degree of impairment with their senses and so this choice was the most sensible one. (quick, duck, it’s a pun.)
The sense of touch is probably the least impacted sense. In essence, touch isn’t really affected at all. However, remember that pesky low muscle tone I mentioned in a past post? Yes, well, there is that. When muscles aren’t toned you can’t feel them working as well. The lower the tone the less you feel. I mentioned Judah’s absolutely adorable, squishy cheeks and how they are a result of low tone? Well, when his speech teacher comes (yes, he has speech already) we work on squeezing those babies and making circles around his mouth to give his muscles a warm up. Judah’s tone around his mouth is actually pretty solid. This will be important to remember as I brush you up on the sense of taste…..Before we head to taste though, I want to mention something else pretty special. Not so much about touch, but more about the hands and feet. One marker that shows up in 45% of babies with Down Syndrome is a single, transverse palmar crease. It looks like a really long life line that travels across the center of the palm instead of a heart and head line. Not every person who has it also has DS and Judah’s is debatable. When the nurses and doctors surrounded our son in the hospital and everyone was trying to hypothesize, this was something that was deliberated. Some consultants saw the crease and some didn’t. It was a thing that I overly inspected in the early days. I was looking for signs of hope, staring, willing Judah to be Down Syndrome free. The truth is now I don’t care if he has it or not. It affects nothing. It does not hinder growth in any way. It’s cause has been linked to that hyptonia or low tone. Some say it is because the low tone did not allow the infant to make a tight fist in the womb, but who knows? All I know is it’s unique, divergent and therefore, pretty darn cool.
So, the feet. They can be divergent and uniquely cool as well. There is another marker for Down Syndrome called sandal gap. This ALSO is present in 45% of people with Down Syndrome and impedes nothing. It is, as its name suggests: a gap in between the first and second toe… sparking jealousy amongst all the flip-flop wearers of the world.. Again, people without Down Syndrome also have this gap and again Judah’s is apparent but not prominent. These markers can be seen on ultrasounds and I feel so fortunate that they were not spotted on mine. I would’ve fretted, sniveled, regretted. But now, these markers are more like medals. They say I’m here, I’m different ; like everyone else……so in fact, I am the same.
Moving on. The sense of taste, one of my favorites, is not EXACTLY what is affected here, but for all intensive purposes of staying with a theme, lets go with it. What is afflicted is the ability to eat. Oh, low tonie, you never stray too far do you? When a baby has low tone, it exists with varied activity. Some babies, are just a little more “floppy” while some will walk, talk, and, yes, eat much later than other kiddos their age. See, that low tone is part of the reason for a protruding tongue. Back to human anatomy here, the tongue is indeed just one big muscle….so, you can see how things would go awry if the tone was less than stellar. One may be unable to push their food around or successfully swallow a drink. At a very tiny age breast or bottle feeding can be near impossible. In fact, many babies with DS have contentions with their GI tract and a G-tube to keep them nourished. This requires surgery, constant monitoring, and a steel set of nerves from mommy and daddy. So far Judah has done poor with breast feeding, well with a bottle and the jury is still out on solid foods just yet. He’s tried whipped cream, frosting and cereal. Loved the whipped cream, sucked the icing down but the cereal he just pushes back out of his mouth. Plain rice cereal with formula? Not sure that I blame him here. It could be his age or his low tone?? Like most things with the littles (especially the ones with that little something extra) only time will tell.
The eyes and ears. All the better to see and hear you with….and the most troublesome for all those who have their hand in the Down Syndrome game. Almost all players must overcome the obstacle of vision and hearing; the very two senses that pillow our days. With vision, there is a backpack of goodies one with DS may carry. There’s cataracts, nearsightedness, its counterpart, farsightedness, astigmatism, weak accommodation, tear duct abnormalities and eye misalignment. One or more of these will probably be present and eyeglass cleaner is a bankable investment. These cherubs should see an optometrist at the ripe ol’ age of 6 months and that’s next month for us. Crazy!!! Since eye issues are popular in our family and I’m a betting woman, I would put a whole stack of cash on Judah wearing glasses. Have you seen baby glasses though? Adorable.
Also, who could ignore the beautiful upward slanted, or preferably, almond eye that is a clear marker of Down Syndrome? It is the trait that I noticed first on Judah, the one that was like a beacon, and admittedly, the one that made me most uncomfortable during the shame days. I’m sure you know that people with DS used to be call mongoloids (insert severe stomach knot here) but did you know that it’s because they had the almond eyes like those from Mongolia? I found that interesting and oddly calming. It took the creepy, monster-like presence away from the name . The eye shape of my baby does not bisect the chain of the connection I feel when I stare into them…it enhances it.
One more thing about the eyes. There are sometimes little speckles called Brushfield spots that are sprinkled around the iris. This is another peculiar feature and not everyone with Down Syndrome has them. Also, some people without DS do have them. Judah has them. They alter nothing………unless you count the magic you feel when you stare deep and see twinkling stars, glistening in his baby blues.
I purposely saved hearing for last. This is because when Judah was born we were told he could not hear. He failed his first tests ever within just hours of his life… honestly, I had no idea how to take it. My mind was already reeling from so much. I wasn’t extensively distraught, I didn’t cry (about that) and I clearly remember my stream of consciousness , it went a bit like this: Did Calvin get a hearing test? Did he pass? How do I not remember them whisking him away? Why didn’t we celebrate him passing? Why was I so nonchalant with his milestones? Am I being punished? Am I a bad mom? …and so burrowing like a bunny I went. We were told that failing a hearing test was common and that Judah could be tested again at 6 weeks. So, off we went, without malice or intent, treating our son like he was deaf. He was stewn with kisses and huddled with hugs, but we spared the baby talk and declared to others “he can’t hear you.” When families came wielding welcomes and their children were, you know, being children… parents would considerately scold “shh, the baby’s sleeping.” In turn, we would classically reply, “don’t worry, he can’t hear you.” Calvin would scream into the poor kid’s ear….nothin’. Loud kid toys, extreme television volume, deliberate cymbal playing, still, nothing. Ironically, I never believed Judah would stay completely deaf. I was now fluent in all that was Down Syndrome and aware of skinny ear canals and some hearing impairments that accompanied the disability. I sought sufficiency in bug like hearing aids and my miniature knowledge of American Sign Language. We armed ourselves with faith that came from little flinches when random “thuds” thudded in our house. We were stuck in a peculiar place. We were pretty sure this kid could hear something… but, if we put too much conviction into it, and we were wrong, could we bounce back from another blow? I think Bobby and I (and even those closest to us) couldn’t get off the ride. It was like a see-saw. “No, he can hear, he can definitely hear. Look at him.” *Cue loud noise* ” nope, he didn’t hear that. maybe he can’t hear? I toyed with the idea more out of sport then out of trying to solve the riddle. After 9 months of deliberating a Down Syndrome diagnosis and two weeks of deciphering an illness, I honestly had no fight left in me. I cared, but I couldn’t put my heart into it either way. I couldn’t bear to. So, I became the most patient person I had ever been in my life and crossed off calendar days until our visit to Hear to Learn. We went, just Judah and I, because he needed to be sleeping, and the area quiet. So far he was cooperating perfectly. Snug in his car seat and all studied up for his next test. They brought him in a sound proof room and loaded him up with little circles (this was becoming a pattern and one I was not fond of.) Oh the waiting. It had to be silent, dark, no magazines, no talking, no whispering, no moving for fifteen WHOLE minutes……..and then it was time for the other ear. I have never sat so still in my life. At least the doctor had the decency to give me a thumbs up on ear number 1 before starting ear number 2. I rode that high almost through all of ear number 2. When my patience was just about to run thin again, she declared… “well, he can hear.” Now, I felt she should check my ears. Did I hear that right? I couldn’t believe it. I cried the happiest of tears, I smooched those chunker cheeks, I whispered “I love you” in both ears. My service coordinator came for the big day and her grin and mine were twins. She kept saying “see” “you knew it was only because he was early,” because he was sick.” She was right. Deep in my belly, those feelings that proved themselves so many times before, had me believing that my baby would hear, at least to some extent…..but now there was a new contender in town. One that shook my confidence. One that made me tip-toe, stop breathing, research, inquire, pray for the best, mentally prepare for the worst, physically prepare for the tears, tell myself no matter what it will be alright, convince myself it will be alright, know that Bobby and I can do anything, pin the pros on my shirt, throw the cons in an old drawer, thank God, cling to my family, sleep with one eye open and count my blessings. I am acquainted with possibilities like glaucoma, G-tubes, sign language, hearing aids and speech problems and I will not cower….because all that has happened in the past has prepared us for our future….a future denied to many. Amen.