Loving Victor

Several people have asked for updates about Victor recently so this is probably a good time and place to do that. Victor is now 2 1/2, very active, very verbal, and very much work. It's often difficult to determine if his behaviors are because he's blind, has a neurological condition, or simply because he's 2.

It's nice that he is so verbal. It's hard to believe that once upon a time he needed a speech therapist but just like his gross motor skills, once he learned to talk, he sped right through the next 10 stages of development. Walking went right from a few steps to jumping, climbing, and running. Talking went from one word (with water bottle - connected as one word - being one of his first) to sentences of significant length. He knows what he wants and when he wants it. "No thank you," is a common phrase. Too common.

Although he was initially diagnosed as completely blind, with pale and under-developed optic nerves, we noticed around 1 year of age that Victor had at least some light perception. His ophthalmologist is still baffled at this since his shine-the-flashlight-in-Victor's-eyes brings no response but Victor always knows if the light is on or off and is always asking to touch every lamp we pass, even if it is far up in a cathedral ceiling.

Mandated reporters and Helicopter parents note: We do not allow Victor to touch lightbulbs or other dangerous heated devices nor do we allow him to climb ladders to touch lamps in cathedral ceilings. I said he asks to touch them, not that we comply to every request. Continuing on...

Around 2 years of age we noticed that if something was held right in front of his eyes, as in right in front, he could often identify it. He loves books and as we held each one millimeters from his eyes, he could identify which one it was. Turning on Elmo's World on Youtube for the first time, with the sound off, with no prior conversation to give him context, he put his face right up to the computer and asked, "Elmo?" More recently we have noticed that he will take a new object and hold it up to his face to name it rather than putting it in his mouth to tactilely identify it as he used to do. We don't know what this means for his vision but it has clearly improved and when he is old enough to verbalize it and have an exhaustive eye exam, we will know more.

While his vision has improved, his sensory issues have worsened. I've mentioned several times his aversion to many foods and clothing such as sweatshirts and winter coats. He won't touch anything squishy such as play-doh. He also isn't fond of soft items like stuffed animals. He needs a lot of activity that uses his muscles, especially upper body. Climbing up the slide rather than the steps may have been off-limits to all of the other children in my home but Victor needs to do this. Crawling is another good activity for him which uses these muscles so we have a tunnel that he can play in. The ball pit also helps him to use these muscles. He has a weighted vest which he wears a few hours each day. It helps him to slow down and to be less erratic on his feet. He also has an insatiable need to bang. Everything. We have an antique bench that is now pock-marked due to Victor's habit. It has been suggested that I could hire him out to distress antique furniture. Not a bad idea.

Mandated reporters and Helicopter parents please note: That was a joke. We do not plan to hire out our 2 year old.

Potty training? No understanding or interest. So he's the first King kid still in diapers past his 2nd birthday.

Giving up the pacifier for nap and bedtime? Not gonna happen if I want my sleep or two hours of free time each afternoon. He has sleep issues, common to blind individuals, to begin with. Besides, his occupational therapist has said that the strong sucking is necessary for his sensory needs. Since he's the first King kid with a pacifier at all, we'll go with that theory.

But probably the most difficult for me are Victor's behaviors which like I said could be blamed on his age, his lack of vision, the way his brain is affected by his condition, or all of the above. Victor and I don't go out in public very often. When meeting new people, his response is usually to scream. Loudly. When in a room full of people, his response is to scream. Loudly. When being held by someone (me) talking to someone else (you), his response is to scream. Loudly. His next response is to bang his head on the nearest wall or floor or person, to roll on the floor in a complete meltdown tantrum, to hit himself or the closest person, or even to bite his own arm. Thankfully, biting someone else has been very rare and most often one of us at home and the one time it happened to someone outside of our home, the parent was extremely kind and gracious.

Victor does love music and his therapists have all suggested that he be around more children his own age so when I found a parent-child music class, I thought it would be a great idea. And the class was a great idea - for the music. Victor loves the music and the movement and knows that "On Tuesday we go to music class." He doesn't sit well, but neither do the other 2 year olds. He may not be sitting but he knows exactly what is happening in the class. And besides, the child can sing the whole Newsies, Annie, and Frozen soundtracks so maybe sitting through Michael Finnegan and Knick Knack Paddy-whack feels a little childish to him. The real problem has been the other moms, helicopter moms in particular, who like to look down their noses at me and my apparent lack of parenting skills. One week Victor was moving around the room as he usually does. One of the other little girls was also walking around. She and Victor had a mild crash, no one was knocked down, and no one cried. But the mom rushed over, scooped up her 2 year old who was perfectly fine and proceeded to coddle and breastfeed her til she recovered from the traumatic experience that never happened (unless you count touching a hyperactive special needs child - I guess that could be considered traumatic to some) while the rest of us sat in the circle trying to decide if we should go on or wait for the milk break to be over. Last week the mom informed me that her daughter was afraid Victor was going to knock her down again. She didn't look afraid to me and I know she isn't verbal enough to make that known to anyone but I kept Victor away so she (the mom) didn't have to worry about that which really concerned her - contact with the kid who wasn't like all the others. Made me feel absolutely wonderful as a parent. Also made me decide that I hope that little girl never meets another special needs person in her life because I don't think she'll have been given the skills to be compassionate.

But then we have other friends who have helped their children understand Victor and his needs. I loved the little boys who honestly and sincerely asked me how Victor would be able to enjoy something that they love - running. And another mom told me that her son enjoys playing with Victor at church and who told his mom that it's okay that Victor screams sometimes because he can't see. This gives me hope that there is a place for Victor because selfishly, my biggest fear is that Victor will be kicked out of places like church because of his behavior - and I need that free time every week! We joined a homeschool co-op this year, not because I suddenly became an extrovert in need of spending time with homeschool moms whose children are all holier and smarter than mine because mine have been to real school but because the only child that is homeschooling this year is a social butterfly and feared that she would be lonely. But my heart has been so happy to find that Victor's teachers not only accept him but have found ways to include him in the room. They used a bubble machine the very first day he was there and my heart exploded when I arrived to pick him up and saw that they had positioned him right next to the machine so he could both hear the motor and feel the bubbles with his hand as they came out. He still talks about the bubble machine when I say we're going to co-op. I cried watching the video of the 2 year olds and saw how he was included in so many of their activities. Someone in there obviously understands how important this is to Victor. And to me.

So that's how Victor is doing. I pray for grace and patience for each day and daily have opportunities to grow in each of these areas. But we love him and enjoy the precious moments with him; times when he will cuddle, when he will snuggle and read books with us, when he says, "I love you sooooooo much," and when he is learning a new skill.

He's our victorious Victor and we love him soooooooo much, too.