Our kids have been
described as having "strong personalities".
We have the organizer, the ham, the little lady, the
charmer, and then we have Gus. Gus is our people person.
Picture the quintessential Wal-Mart greeter.that's Gus.
Gus also has a mutation in his
number 2 chromosome. It's a situation without a name;
there is no "syndrome" or "condition"
that we can point to. For that we are thankful, as it
means that Gus is just Gus. That's just the way he is.
As a four year old, he is developmentally delayed, a
little hard of hearing, he wears special inserts in
his shoes, and he is Gus. Gus is different because he
doesn't talk yet, but he is also different because he
likes to suck his first two fingers, and because he
has big dimples. But what makes him the most different
is that he loves everyone so very much.
As I mentioned, each of kids
has a strong personality. As an infant, Gus was our
little lover. He wasn't as active as other babies, and
would tend to give you an odd blank stare. But he also
had a unique way of holding onto you in a way that other
kids don't. I've held a lot of babies in my day, and
this was different. You would lay Gus onto your chest
and it felt as if he sank into you. I don't have a better
way of explaining it. It was as if he was physically
meshing with you. I can't tell you how many times a
new person would hold Gus and actually give a soft moan
with that feeling that Gus was willing himself to become
fused with the other person. It was a feeling of someone
wanting to connect without any barriers, any reservations,
or second thoughts.
But as Gus grew we realized
he was slower than the other kids. It was startling
when we found that his head was much too small for his
age and then came the genetic test which confirmed that
he was different. Again, since this wasn't a "syndrome"
so we could never be sure what to expect. So what we
had was a steady trickle of things that were new to
us old parents. Orthotics, hearing aids, sign language,
IED, special ed were things we learned along the way.
But the orthotics led to the day at the park where he
played with the pretend steering wheel and, for the
first time, he stood without holding onto anything for
more than a minute. The hearing aids came in time for
Gus to hear Christmas carols for the first time. I still
get a little teary eyed, as I did that day, with Gus
in my lap and seeing his wide-eyed amazement at the
beauty of Silent Night being sung by the church choir.
Things continue to evolve. Our
people-person used to invite people to play by tapping
them on the stomach. It evoked a strange response to
his new friends. Now he likes to take your hand and
walk you over to where he wants to play. To the shelf
to read books, to the table to get a snack, or to the
day bed for a good wrestle. Just in the last month,
he has begun to understand that he can take Papa's hand
and Mom's hand and move them together so they give each
other a kiss. Then he pulls us down so we both give
him a kiss. Then we walk to a different room for kisses.
Then we need to sit on the sofa and kiss. The whole
time Gus' smile is radiant since he is in control and
able to make Mom and Dad kiss.
Another thing that has surprised
us is the number of programs available to help kids
like Gus, and to help the parents of kids like Gus.
A weekend at the Minnesota State Academy for the Deaf,
free captioned videos in the mail, loaner hearing aids,
even the handicapped parking sticker. But one of Gus'
favorites is going to St. Edwards. They have a daycare
type facility for special needs kids as well as average
kids. It was there that we learned of one of Gus' special
gifts. As I've said before Gus is slow but loves people.
Due to those traits, Gus has become a great playmate
to some of the autistic kids in his class. In varying
degrees, the autistic kids aren't comfortable with too
much rough action and excitement. It can just get to
be too much for them. But Gus moves a little slower
and a little more gently. He's happy to stand next to
you, look at you and smile. When you smile back, maybe
he'll tap you on the tummy or hand you a toy. He's just
so happy to be there with a friend.
We assume that Gus will
live with us for as long as we are around, then to live
with his siblings or a nice place like L'Arche. And
I note what a blessing it will be for my aging wife
to have her gentle giant of a son to help her with the
garden. I'm hoping to be able to coach him in the Special
Olympics, probably power lifting but we'll see how he
grows over the years. We're never quite sure what will
A couple times a year, we have
an IEP meeting for Gus. IEP stands for Individual
Education Plan. It outlines how his team (teacher,
special ed teacher, occupational therapist, speech person,
etc.) have been working with him and what the plans
are for the future. By the IEP, Gus' primary disability
is "Severely Multiply Impaired" with the secondary
disability being "Speech/language Impairement".
Our IEP meeting this week went on for about an hour.
Towards the end, the teacher and special ed teacher
told us there was something that they didn't put in
the IEP because they weren't sure how we'd react to
it. Deep breath. As startling as it may
seem, she declared, "Gus can read".
She told us how, for the half of the day that he's in
the regular classroom, he does all the the things that
the other kids do, except in his own way. At reading
time all the kids sit in a circle. Gus sits with
his paraprofessional right behind him. Then the
teacher will show two sight words and asks each kid
to identify one of the words. She might hold up
"on" and "was" and ask the kid to
point out "on". They proceed around
They will usually skip Gus, but once in a while he will
make a sound to let them know, "hey, you missed
my turn." So they would put up two words
and ask him to guess which one the teacher was asking
for. He might get it right, but there's a 50-50
chance of that happening. This happened a few
times, and he was doing much better than 50-50. So
the two teachers thought they would take Gus and go
through a serious of words.
Gus sat on the teacher's lap. The teacher held
up two cards and asked Gus, "which one says "with"".
Gus pointed to "with". The teacher
held up two more cards and asked Gus to point to the
one that says "me". Gus pointed at "me".
She did this for several sets of words with only
one mistake (later he got that word right). Eventually
Gus got bored and would just point at any card so that
he could get down and play with real toys. But
while Gus was attentive, he was getting 90% right out
of 9-12 sets of words. That still seemed beyond
belief, so they repeated the experiment in different
ways with consistent results. The most recent
test was earlier that day (I think they wanted to convince
themselves again before they broke the news to us.)
Then the occapational therapist started in. They
were coloring. On a page with different shapes,
she asked him to color the triangles. He colored
the triangles. She asked him to color the squares.
He colored the squares. Apparently he knows
his shapes as well.
So we politely picked our jaws up off the floor. At
home, we had moved past the "Pat the Bunny"
books so that he could have more interesting stories
and prettier pictures. Now we have to dig out
the "Pat the Bunny" books and point at the
words as we read. We are giving more detailed
instruction and explanation when we do stuff with him
and as a family. Gus seems more engaged and relaxed
as a result.
Who knows where we'll be next year.
Gus' words thusfar,
and, to, in, was, this, he, with, his, they, me, have,
one, had, like, on, you, the
There's a very touching song
called "He May be Slow" by Tom Paxton. Just
hearing it gets me watery eyed, but when all his siblings
instinctively sing along it can put me over the edge.
Gus' third grade sister took some inspiration from the
song and wrote a poem. This wasn't even a class
assignment, she just did it. The first few lines
are paraphrased from the song, but the rest is all her.
Read it here.
to Rare Trisomies, Ring, and Deletions
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.