Gus

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 happen next.

UPDATE (3/18/08)

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 the circle.  
 
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.

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-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.