They say that the eyes are windows into the soul. I suppose. When I look into the eyes of my nearly three and a half year old son, Sebastian, I see so much. So much sweetness, so much innocence, so much potential. Yet as clear as his big, beautiful brown eyes are, there is a certain opaqueness about them, and seeing beyond what is at the surface is difficult at times.
Almost one year ago, I wrote a particular blog entry about Seba when he was just two and a half years old. In this post, I expressed my deep concern over the fact that my child was still not talking. As in, no vocabulary whatsoever. It was troubling me a great deal that, despite the fact that he was and is a clever and happy little boy, and despite everything that he was able to do, he had yet to utter a single intelligible word in either language.
Fast forward nearly a full year later, and things have improved somewhat. He now has about half a dozen words that he uses fairly consistently (among them, “Papa,” “Agua,” “Chau,” and “Peppa” (as in Peppa the Pig), but alas, not “Mama” or “Mommy” quite yet. And despite the fact that my child is not regressing, it is still somewhat disheartening to see his peers continue to reach milestones that seem light years away from my little boy.
Since what feels like ages after that ominous entry, Fede and I have been having Seba tested by various professionals with expertise in different fields. Seba has also additionally been undergoing occupational therapy and speech therapy a few times a week. What we know so far is that in terms of fine and gross motor skills, he is above the norm. Furthermore, a CAT scan has shown that his brain is physically fine and developing well (*major exhale of relief*) and his hearing is also perfectly normal. However, the fact of the matter is that when it comes to communication and verbal expression, Sebastian is about on par with a one year old.
A few months ago, we applied for and obtained a “Certificado de Discapacidad” (“Handicapped Certificate”) issued by the city government. As ugly and as extreme as it sounds, it was mostly for the significant advantages that it would allow us in terms of services for Sebastian that could receive full coverage by our private OSDE insurance. The label that my son was given, according to the panel of professionals who issued the certificate was TGD NE (Trastorno General de Desarollo No Especificado), more currently known as TEA (“Trastorno del Espectro Autista”). After doing some online research, I found the English equivalent, PDD – NOS (Pervasive Developmental Disorder – Not Otherwise Specified). After doing further research, I also found out that the same PDD acronym is known in the parental community as “Physician Didn’t Decide,” as the diagnosis itself leaves more questions than it does answers in terms of what the affliction is and how it impacts the child.
TEA. TGD-NE. PDD-NOS. SPED. ABC-XYZ. Welcome to the world of intimidating acronyms. Previously among my fellow educator colleagues, we used to half-jokingly call SPED/LD students “Alphabet Kids” for obvious reasons. It never seemed like such a big deal until suddenly those seemingly random, jumbled-up letters started spelling out a serious sentence for a child. My child. And now they are as ugly as they are disjointed.
It’s disheartening on so many levels. Above all, I know that my priority should be that my son is simply healthy and happy, and that I should be contented with that. However, I worry about what the short and the long term future holds for him, if we will eventually need to send him to a special school, or what will happen when he and his peers are more conscious of how he is “different.” I wish I had an inkling of what the future holds, but I just don’t know what I should be feeling right now.
And then comes the guilt. All over again. That his delays and issues undoubtedly stem from something that I did at one point or another (either during the pregnancy or his first precious months of life) for him to turn out like this.
Every three months, I receive an email update from a parenting newsletter in Spanish, Planeta Mamá. For my own sanity, I need to unsubscribe from it. It includes news about what my child at X number of months/years should be doing: “Congratulations! Your three year old is probably already [insert seemingly impossible accomplishment here – Using full sentences. Completely fluent in sign language. Starting to write the his first novel. Using telekinesis to bend random objects with his mind at will, blah blah blah]… GAHHHH!
I know, I KNOW that I cannot and should not compare my son to other kids. I understand that . No, seriously, for the last time, I get it. But what can I do, when the differences are so striking and obvious?
It wasn’t too long ago that a coworker’s relative came over to our apartment to “read” Seba’s aura (Hell, I’m willing and open to just about anything at this point), and concluded that Seba is actually an “indigo child.” In other words, he is a special child with an “old soul” and unique psychic abilities, but the fact that he is caught between two worlds impedes his ability to communicate.
Other people have observed my son for a brief time and believe that he has several classic autistic traits and tendencies, so that must explain his delays.
Another helpful person, seeing how sensitive and delicate the situation at hand is, offered the reasoning that Fede and I are “lazy” parents, hence the reason that our son’s lack of speech. Needless to say, this strong, unsolicited advice stung me quite deeply.
Despite his lack of words, it is completely evident that Sebastian doesn’t have a mean or aggressive bone in his body. He is cute as can be, he is happy. He is is sweetness personified. Despite his lack of language, he has his own distinct and bold but affectionate personality. But as I look into his deep, coffee colored eyes, I just wish that I knew what he was trying to tell me without words.
All I can do for now is to hope that he does understand and know how unconditionally loved he is, and that there are no words, in any language, to express what he means to me.