Saturday, May 19, 2012


"Mama, can you tell the therapist about me today?" Calvin asked me on our way to physical therapy one morning. I might have shed tears over this little cry for attention, but we were running late and my thoughts were hurried. I don't remember how I answered him; most likely it was in the affirmative. During therapy sessions Calvin is usually kept occupied by a rousing game of Angry Birds. Despite this I know that my quiet, intuitive little boy is still aware of all that goes on around him. And while he mostly keeps it to himself, I know that sometimes he feels left out.

Siblings of children with special needs deal with a different type of rivalry: a competition for even the most basic forms of attention. The child with special needs requires more or everything: more time, more effort, more financial resources, more discussion, more concern. It is no wonder that the other sibling(s) can often feel left out.

I have a couple of ways of combating this, although I am far from perfect and I feel like I fail at it nine times out of ten. First, we're trying to be much more intentional about giving Calvin one-on-one time. We notice a huge boost in his mood when he gets this time with either of us. There is simply no substitute for this kind of quality time with his mom or dad. 

Second, I try to foster a relationship between Calvin and Juliana as best as I can. This is actually difficult as Juliana pays a lot of attention to me, to David, and to the dog, but not a lot of attention to her brother. Calvin is always affectionate and kind to Juliana and I could probably count on one hand the number of negative interactions that the two of them have had. However, they don't interact nearly as often as I would like since he's not getting a ton of feedback from her. (I would appreciate prayers for this. I am hoping that the sensory work we are doing will also give this a boost). I also try to include him in her therapy to the extent that he is interested. There are some exercises that he enjoys doing himself (bouncing on exercise ball, pulling up with a dowel). There are also some exercises that he enjoys participating in as a 'teacher' (rolling balls or cars up and down the crawling track is always fun).

Third, I try to meet his needs as best as I am able. If I run an errand with only Calvin in tow, he will ask me to carry him throughout the store. I do it. This is a request that he never makes if we're with Juliana. He asks me to take naps with him. I do this too. (Admittedly I love doing this...) When he wants to spend some time showing me how he plays Angry Birds, I oblige. I don't load any of Juliana's needs onto him. I have been careful to never say "not right now Calvin, because I am doing such-and-such with Juliana." I don't want to set up any sort of additional competition for my time. I also try to be sure to talk about him in a positive light just as I do Juliana. For instance if I tell David a story about a new thing that Juliana just learned, I try to also tell a story about what Calvin did that day. Calvin craves this kind of attention.

I've only been at this a year so I'm still learning. I think that for the most part I am not parenting in a very special fashion; the main difference is that I need to be far more intentional about it than what would be required in typical circumstances. Calvin really bottles up his feelings (I have no idea where he got that from...) and I really have to pay attention to him to see how he is doing. I know that things have gone too far when he is quieter than usual and is only looking at the floor.

Calvin was born kind and empathetic. It is truly his personality (though he certainly still has his moments). I have a very distinct memory of holding Juliana in the NICU shortly after the doctor had ordered an ultrasound on her head. She wasn't eating and one possibility was that she had suffered brain damage. I couldn't process all of the implications, so instead I just rocked her and prayed for her. I told her that if she was brain-injured, that was ok. I thought of Calvin waiting for us at home, and what would life be like with these two children? I told Juliana that I had the best big brother waiting for her and we would take her home and love her regardless. There have been many times between then and now that I have been so thankful for Calvin and his wonderful personality that is so suited for this situation.

I do believe that ultimately Calvin and Juliana will both experience huge benefits from their relationship. I hope and pray that they will both teach and encourage one another. 

Monday, May 7, 2012

Sunday of the Paralytic

Today in the Orthodox Church marks the Sunday of the Paralytic.

Looking at the icon of the lame man now walking, I couldn't help but think of the post I just wrote about Juliana's crawling track.

On this, the fourth Sunday of Pascha, we make commemoration of the Paralytic and, as is meet, we celebrate the miracle wrought for him.
The word of Christ was strength for the paralytic; And thus this word alone was his healing.
Jesus healed the Paralytic at the Sheep’s Pool, located near the Sheep’s Gate of Jerusalem, where people sacrificed their beasts and washed their insides. The pool had five sides, with a porch and arch on each. A number of people, afflicted with various diseases, passed through them, waiting at the water for an angel to come down and stir it. Once it moved, whoever stepped into the water first was instantly healed. One poor man, whose story is recounted in today’s Gospel lection in the Divine Liturgy, waited 38 years for someone to lower him into the water, because he was unable to move into the water himself. However, the Savior merely commanded the man to get up and walk, and he was healed.
By Thy boundless mercy, O Christ our God, have mercy on us. Amen.

Saturday, May 5, 2012

The crawling track

Juliana has low muscle tone. Practically every kid with Kabuki syndrome has it (same goes for many other genetic disorders such as Down syndrome, etc). It took her quite awhile to gain complete head control. She was surprisingly not very delayed when it came to rolling over. She was somewhat delayed with sitting up (10 months - believe it or not, this is considered "not very delayed" for kids with similar medical issues). At 14 months old, she still cannot crawl.

And this drives me crazy. I want her to crawl and I believe that she does have the ability to crawl, if only I can help her realize that she can do it. I no longer believe in letting her do things on her own schedule. She needs tons of stimulation and lots of help, but she still has the ability to learn and she needs to be constantly learning.

Up until very recently we have been pursuing only conventional options for physical therapy. While our PT is very knowledgeable, results have been painfully slow. And then late one night I learned about Glenn Doman. And I learned about the crawling track.

I immediately emailed my dad and asked if he would build it for me. A few days later we were at Lowes picking out supplies. And a few days after that the track was complete! I've been trying to use it regularly ever since, and the track is getting even more use now that it is part of our neurodevelopment program.

Glenn Doman says that he has worked with brain-injured children who weren't moving at all before they started using the crawling track. Fast forward months later and these children had become mobile. Initially the track is kept very elevated so that the child doesn't have to make much of an effort to move forward. Slowly the elevation is decreased until the track is flat on the floor. I mean really - this is not rocket science. But we have never attempted anything like this in all of our hours of PT at Children's Hospital.

Per our neurodevelopment program, Juliana is supposed to use her track four times a day for up to five minutes, or however long it takes to get to the bottom of the track. We've seen some big improvements since we started. Initially she would try to roll over as soon as she was placed on the track (this girl hates tummy time). It's rare that she does that anymore. Initially she would just cry as if she was being tortured. Now she will occasionally complain. Initially she wouldn't move down the track, no matter how high it was elevated. Now she does! It's not always graceful, and she is still taking a lot of breaks in-between movements. She needs a lot of motivation and I have tried to enlist Calvin's help with this. (You may have also noticed that he decorated the track for her with a collection of Cars stickers).

Crawling is a really important milestone that is good for both the body and the brain. (Nice summary of this here.) From my rudimentary understanding of Doman's work, it seems that once crawling is mastered a lot of other things begin to kick in. 

I wish that I had begun this much, much sooner. If I had begun ten months ago then I firmly believe that Juliana would be crawling by now. But I'm really not mourning the past, instead I am excited to have found some real solutions that are challenging Juliana and helping her progress.