Thursday, September 27, 2012


Juliana is a bookworm - a total fanatic for books. When I taught her the sign for "book" she instantly caught on and began using it to her advantage. When I ask her if she is ready for bed, she always starts to sign "book!"

We have two set reading times daily: before naptime and before bed. But I think she would be happy to read books all day long.

Pride and Joy

One of the most surprising aspects of the past eighteen months was my inability to deal with the challenges. I was not much of a candidate for postpartum depression and to be thrust into its throes was both surprising and terrifying. In retrospect it gave me a totally new viewpoint and a new understanding and for that I am appreciative.

I used to pray that I would hurry up and get over it, that I would accept the situation and that I would love Juliana just as I loved Calvin. When the days were long and difficult, when she was vomiting everywhere, when she still wasn’t smiling at us or even looking at us, I kept on keeping on by telling myself that someday the situation might be different. Even in a depressive state, I didn’t want to have regrets of how I spent the first few months of her life.

I hope that that in sharing our journey over the past eighteen months I have not inadvertently blamed the stress, the sadness, the PPD on Kabuki syndrome. I wasn’t depressed because Juliana had concerning health issues: I was depressed because she would not eat. The emotional toll that this takes is absolutely incredible. I sincerely hope that I have never portrayed Juliana as a burden. She is not. She is most certainly a blessing.

We most certainly got off on the wrong foot, with health issues and a feeding/GI nightmare. Add in the fact that she was in the NICU from the time that she was a few minutes old until she was 4 weeks old. Very unexpectedly, I had a hard time bonding to her initially. There simply was no opportunity to do so. It gave me a lot of grief as I strongly believed that things would become immeasurably easier once I had a strong bond to her.

Things are very much easier now. To be clear, life may never again be as ‘easy’ as it once was. I look around at others and sometimes I can’t help but to think about how my challenges are greater than theirs (quite possibly I’m wrong - comparisons like this are admittedly completely unfair to all parties). I used to find myself dwelling on this but as time goes on these thoughts are extremely fleeting. These days I chastise myself for thinking that easier somehow equates to better or more fulfilling. It doesn’t.

I recently read Angel Unaware, the story of Roy and Dale Evan Rogers’ daughter who had Down syndrome. (Hopefully my younger readers know who Roy Rogers is.... David didn't!!) It was a very quick read and honestly I found it hard to relate to the 50s era outlook portrayed in the story. While the Rogers loved their daughter very much and they outright rejected the idea of sending her away, they also gave up much of her care to a live-in nanny and for the most part they continued to maintain their busy schedules. It’s particularly saddening to me since their daughter died after her second birthday. All that aside, the Rogers had a wonderful outlook on life and I particularly enjoyed an account that Dale recalls:

One day Father Smith, whom I had not met, called on the telephone and said to me, simply, “I want you to understand that I know all about your child. You have done the right thing in bringing her home with you to cherish her and love her. You and your husband will soon begin to receive what our Lord wants you to learn from this child. In my opinion these little children are allowed to come into this world to bless lives. Their presence teaches patience and understanding that makes those around them more godly. Mrs. Rogers, you are truly blessed by the Lord, and you may be sure that your sweet Robin will one day be rewarded handsomely in the hereafter.
From the outside looking in, this may simply sound like a platitude. It’s not. We humans may be masters of self-deception but with this type of experience platitudes don’t go too far. Juliana has brought with her a lot of change to our lives and all of it has been good. All of it has made us better. We’ve experienced a roller coaster of emotions, from depression to worry to happiness and pride. I am immensely proud of her. This is really the first time I’ve experienced this type of pride as a parent. Don’t get me wrong - we think that Calvin is one of the most amazing human beings to have ever been born. But it’s undeniable that everything comes easily and naturally for him, so this type of pride is quite different. It is far more intense. Juliana amazes us on a regular basis.

Not that long ago I wrote that I would take away Kabuki syndrome in a heartbeat if possible. I didn’t yet understand the (wiser) parents who said that they wouldn’t change anything about their child. But as I have healed from the immense stress of our first year I have slowly come to a much greater appreciation of this acceptance. Personally I’ve come to the conclusion that diagnosis is irrelevant. When I look at Juliana I don’t see Kabuki syndrome. I see her for who she really is and her personality far outshines other issues.

I’ve been very honest in my accounts over the past year as I don’t think there is any point in sugarcoating or anything less than genuine. I hope that my posts demonstrate a progression from feeling sorry for myself to empowerment, peace, love, happiness and all that jazz. I hate to think that I’ve painted a negative picture of parenting a child with different needs, but at the same time I have to be honest about the difficulties. The lows are very low. But I want you to know that the highs are higher than you would ever believe.

Wednesday, September 12, 2012

Eating Well

Once again it's hard to believe the progress we've made in the past few months. Just a few months ago I was still frequently relying on the TV to distract Juliana while I would feed her. I hated having to do that; I limit TV in general and I am definitely not fond of eating in front of it (exception for myself after kids are in bed, of course). But I found that the TV was often just the right amount of sensory input for her to calm down long enough to eat. You do what you have to do when getting a sensory-sensitive kid to eat.

These days the TV is no longer necessary. I was able to slowly transition her to meals eaten in the kitchen or dining room. One of the most successful things I did in this process was encouraging her to feed me during mealtimes. Though I've always tried to follow her cues, I still really felt like she was tired of being told that it was time to eat and she was tired of me trying to shovel food down her throat. And who can blame her for that? So I found that she really enjoyed feeding me, whether it was real or imaginary food was irrelevant to her. This made the feeding time more of a two-way street. It put us on an even playing field. She began to eat a full meal without the aid of any distraction. I didn't come up with this idea all on my own, it is one of the tube-weaning techniques used at Graz.

From that point she's learned to self-feed and that's brought an entire new level of happiness and self-control to her meals. We still have a long way to go with utensils but she's thrilled to feed herself small pieces of meat and vegetables.

Yet her eating skills still need some improvement. This is part of what recently drove me back to speech therapy after taking a break over the summer. The first issue is that she doesn't really chew her food, rather she just swallows it. The second issue is that she is sensitive to certain type of textures. She's happy to eat a soft vegetable like squash but she's totally uninterested in something like cauliflower, unless it is pureed.

This world of pureed foods and spoon-feeding has all been a  new experience for me. With Calvin I loosely followed the concept of baby-led weaning and we did few purees and not much spoon-feeding. By the time he was really becoming interested in solid foods (sometime in his second year) he was also able to eat anything that we would eat. Because he continued to nurse continuously, I never worried much about whether or not he was getting enough to eat or if he was getting the right nutrition. Juliana's situation really could not have been any more different.

But back to the progress update. What excites me more than anything though is that Juliana is often eating the same meals that the rest of us are eating. Sometimes her version of the meal might need a little modification (like leaving off the cheese or the heavy seasoning) but otherwise she has begun eating dinner with the rest of the family. And she is immensely happy about it - she knows when she's being left out! This is not to say that she's now at a point where she is eating pizza and cake, rather it is to say that we are all eating fairly simply. But there are no complaints from anyone, and what more can a mother ask for?!

I still worry about how much she is eating and sometimes it is difficult to trust that she knows how to self-regulate her needs. But I have to admit that she has done a fine job of it so far. We have a few things to work on, but overall she is eating great foods and she is eating them well.

Friday, September 7, 2012

Self-Determination: Requirement for Success

They are able because they think they are able. - Virgil

There is a tendency in the “special needs” community to treat our children as if they are.... special. I’ve eschewed this stance from the beginning. It wasn’t done consciously, at least not at first. I was already a parent when Juliana came along. I try to be very intentional in my parenting and I am idealistic regarding how I want my children to be raised emotionally, intellectually and spiritually. None of that changes for any child of mine, regardless of their diagnosis. We have always treated Juliana exactly the same way that we have treated Calvin.

I have often wondered if special needs kids don’t develop certain skills simply because they have not been given the opportunity to develop those skills. Recently I read a story of a teenager with Down syndrome who liked to mow the lawn. His mother wanted to know if she should have him wear protective eyewear while he mowed.

Does anyone wear protective eyewear when mowing the grass? I never have and I’ve never seen anyone else do it, either. I have seen similar stories of parents who are afraid to let their teenager boil water. This type of coddling is not for me. I would much rather presume capability and then watch as my child lives up to their potential.

I was delighted to see this thought expounded upon by Kathie Snow in her excellent book Disability is Natural:

Many parents and professionals still do not look at children with disabilities and presume competence. We don’t expect them to be responsible. It’s almost as if we think it’s all right to keep children dependent, for parents and other adults to control their lives; we’ll wait until they’re adults to worry about their capacity for self-determination. But we can’t wait! And we must not make our children wait! ... Being self-determined is more important than any other functional ability.
Is it possible to be successful without also being self-determined? I think not.
Snow actually takes self-determination a step further than I expected. A self-determined child must come from a self-determined family. I hope that someday my account of Juliana can be summarized as such:

When we’re self-determined, we don’t automatically accept the conventional wisdom about our children, nor do we make decisions based solely on the expertise of others.
I’ve spent the last 18 months learning all the special needs lingo and reading as many accounts as I’ve come across. There is rampant reliance on “the system,” whether that be the medical system, the medicare system, the early intervention system, or any system outside of the community that parents have traditionally relied on for advice. There was a brief time when I did put my faith in this system: faith in doctors to help my baby stop screaming in pain, faith in therapists to help her progress. But before too long I remembered that I am the person who knows my child the best. I am the one who has a vested interest in her outcome. I am the one who lies awake at night wondering what I should do next. I am not on a payroll, this is my life 24/7. We can certainly utilize elements of various systems but I believe we lose in the long run if the service system begins to define our family and subsequently destroys our autonomy.

I utilize “the system” as one of many tools in my toolbox. Juliana is in Early Intervention. She has multiple doctors. She is also on Medicaid. We seem very much like “system” people. But I don’t always follow the advice of doctors, and most of my greatest successes have been as a direct result of disregarding their advice. If a therapist says something that I disagree with, I don’t assume that they are right and I am wrong. I don't ask doctors or therapists for their opinion on how I should parent. When Juliana ages out of Early Intervention therapy and we’re told that it’s time to send her to a special needs preschool, we will decline.

We are in control of our lives, not the system. We decide what’s important. We decide what’s normal. We prioritize for our family. Long ago I made a vow that we would not structure our entire lives around therapy schedules. Admittedly, we’re still not there. But at the same time we have not taken on a therapy load that is impossible to handle.

If our children have grown up in families that are dependent on the system, they’ll learn that as adults, they should depend on the system. Don’t underestimate the importance of this: it’s not just about being on SSI for the rest of their lives, it’s about leading segregated lives. Lives in sheltered workshops, institutions, activity centers, etc. I very much want both my children to lead lives that are integrated with regular society, lives with unlimited opportunity, lives that contain interactions with all sorts of people and lives that are self-directed. The goal of inclusion is one (of several) reasons why a preschool specifically for special needs kids will not be on my agenda.

While writing this I have wondered if I’ve come across as overly idealistic, particularly to those parents who have children much older than mine. Maybe so. But one thing that I’ve learned from my friends on the Kabuki syndrome group is that our kids have so much potential; potential that is overlooked by doctors, therapists and everyone in the ‘system.’ My fellow parents have been told that their child will never walk, never talk, never do this or that. Of course, the child does go on do these things - and much more. I will always treat Juliana normally, and I will always have high expectations for her and her potential, despite the secret fears that linger in my heart of hearts. High expectations set a course, and that alone is reason enough to be idealistic.