Cautious Optimism

August 30, 2010

Cautious optimism; that is the only way I can describe the feelings that are in my heart. The roller coaster took another turn last week as Jakki called me from the pediatric behavioral specialist in Vacaville. He is the ASD specialist for Kaiser Permanente in northern California, so he has a lot of experience in this field. It is his opinion that if Natalie was six months old she would be considered perfectly healthy and displays excellent behavior and actions. Considering that she is instead nine months old, we all worry, and Doctors provide analysis and diagnosis based on the observations of thousands of children and their growth patterns. Natalie is not where she “should” be. It is obvious that when you look at her and consider her age that she is behind. But all of the symptoms are consistent with that pattern; she is in six month clothes, she displays six month behavior in recognition and repetition. There is a strong chance that she is just three months behind schedule and that there are no other health problems. This could have been the result of her previous ailments and concerns addressed above, starting while in the womb.

However, the Doctor does want to check up on her in March of next year, when she is sixteen months old, and hold one more observation, just to settle the issue. Then we will see if she has developed all of the “one year” traits, like walking, learning, and recognition. But for now, when doing research for Natalie, take her age, subtract three months, and then compare. If this pattern holds true for the rest of her life, then we won’t see any difference in comparisons this time next year. But for now: no autism diagnosis.

Relief. Mostly.

I know that this is like getting a blessing from a high priest, a promotion from the company partner, or a medal from the president. The specialist is just that, he specializes in this field, he has seen hundreds of autistic children at all stages of development, and his observations are the final word. But I have been cautiously pessimistic about every diagnosis to date throughout the last year, never believing in what the doctors say and never taking their word for granted. Even now, with a positive diagnosis, I don’t trust the result until I see that she is doing better, with my own eyes.

I took Natalie to my parents this past weekend, and she did something that was new, and made me feel like a daddy. Natalie is starting to shy away from people and hide in my shoulder. That is a significant step in recognition behavior, and this is normally observed by parents at six months, so there is some truth to this new hypothesis. Independent from the medical perspective, it felt good that she felt protected in my arms. She wanted to be with me. She recognized her daddy as a safety net. Until now, I never felt that connection with her.

Considering the amount of frustration and stress that Jakki has had over the last few months, I knew that she needed a break. So this last weekend Jakki had a small holiday, and spent her first night away from our daughter. I sent her away with our close friend Ashley, and they had a great time on the beach in Monterey. It was good to see her come home recharged, however she says she needed a softer bed and a shoulder massage to top it all off. We can always use a shoulder massage. If I remember, I will work on that tonight. I just hope that her stress relief holds out for the next six months until we see the specialist again.

Natalie and I held our own over the weekend with Saturday in Modesto and Sunday at home, relaxing. I could tell Natalie was starting to miss her mommy and she was excited when Jakki got home. Both are healthy patterns.

So, I guess I will change my blog heading. I am still struggling with all of this. For now, we are considering ourselves happy and healthy, and although the storm clouds are pushed off into the distance, they are still within sight of the shoreline. I will still feel an underlying sense of concern until this is resolved.

Natalie’s roller coaster is still moving along, and I am sure there will be plenty to write about.

~ Nathan

Head Cold Week

August 20, 2010

Head cold week. Jakki and I have been sick for the last few days with a moderate summer head-cold. Unfortunately, Natalie has the cold too, as she is congested and not breathing easily. This cold is making us all lethargic and unmotivated. I am starting to feel better, but I am prolonging my recovery by going to work instead of staying home and resting. This is not by choice as I am out of sick leave. With Jakki’s dad going through major surgery earlier this year, I depleted my sick time off and need to build it back up for this winter, where I know I will get sick beyond this cold.

Still no crawling. Natalie and Jakki have been working hard on the Physical Therapy this week. So much that Jakki recognizes which exercises Natalie doesn’t like, and which ones she does like. I think this is a good step because Natalie is very particular. She doesn’t have any problem letting us know that she doesn’t like what is happening. I agree with Natalie on some of the exercises, as I see no benefit to rubbing Natalie’s head on the floor to the point where she is crying out in pain and discomfort. I suggested that we just skip this one, but Jakki said that this was Dr.’s orders. I want to meet with the therapist and rub her head on the floor until she cries and ask her which muscles are being worked on.

Communication is a funny thing. Sometimes, I worry about Natalie’s communication development. She isn’t forming words, or even attempting to. She grunts and whines, holding long notes of varying volume and tone when she wants or needs something. She used to babble, but I have noticed that she has not babbled (baba, dada, lala) in the last few days. I hope that this is not a regression in her speech development.

I played with Natalie in her chair last night, building colorful rubber blocks up on her table, and I noticed that she cannot grab and hold the blocks yet. I don’t know when this “should” happen, but it bothers me that she isn’t at that point yet. She can grab and hold a soft book or small board book, but not her blocks yet. She does not yet coordinate her two hands together. She isn’t clapping yet. Maybe we are pushing our expectations. Maybe she should still be a baby, and we shouldn’t worry about her grabbing and holding larger things. But I want her to show signs of development, so I worry about these things.

I can tell that Jakki is worrying about it too. She has had a few days of depression and volatility. Not with Natalie, per se, but about Natalie. She is just frustrated, sad, and angry. Jakki isn’t the type to take to comforting or sympathy, so I am left hanging with what to do to help her. I just want her to feel better, accept the situation, and hold onto the positive moments in our lives. Easier said than done though; especially when we are all sick, and we have no idea what Natalie’s life is going to be like from day to day.

I need a positive ending, huh? Well, I am really looking forward to spending some time with Natalie outside. I think that will be the goal for Sunday, assuming that we are all feeling a little better. We need some fresh air in our lives. Jakki has spent too much time in that house, and I think it would be best for all of us to get outside and play for awhile. So I am making a personal goal to get us all out of the house on Sunday for playtime. No errands. No chores. Playtime. I am looking forward to it.

~ Nathan

9 Months Old!

August 13, 2010

Natalie is 9 months old today, and it is Friday the 13th, which will always be her special day.

I planned to update this blog weekly, on a recurring schedule, in order to force myself to write out my thoughts, feelings, concerns, and ideas about the situations that we are facing with our daughter. Unfortunately, I am a little numb today. I don’t feel anything new, or worth detailing. I have few concerns, and absolutely no ideas. So I will just provide a brief update this week.

Natalie went to her first Physical Therapy session yesterday with Jakki. They went to the Kaiser Permanente facility in Sacramento, and the session went ok, I think. Jakki is not too thrilled with the therapist, everyone seems to have an opinion on her condition and unfortunately that gets in the way of progress and frankly is starting to really get on Jakki’s nerves. The therapist is no exception. The therapist seems to think that Natalie’s physical condition isn’t about a growth condition as much as it is about her mental state of mind. She is smart. She has her parents trained. Why work on crawling and reaching when mommy will give me what I need sometime soon anyway? She is patient, and she doesn’t need much to occupy her time. She doesn’t need to be independent yet and she knows it. At least, that’s what the therapist thinks. I can see it either way, I guess.

The therapist provided Jakki with some training and exercises for Natalie. It seems that she has an underdeveloped core, and requires some muscle exercises to help with her balance and movement. Two weeks of home exercises and then they meet again.

On the positive side, Natalie has started to take the initiative to do complete push-ups. Before now, she was a fish out of water, flopping around on her belly and back, with arms and legs flailing. She was rolling on the floor to get around, and she can spin herself so that she can roll in any direction. Now she is starting to actually lift her stomach off the ground, and she has found her knees help with that. I have a feeling that she will transition from rolling to crawling in a couple of weeks, but time will tell.

~ Nathan

Natalie's Roller Coaster Life

August 6, 2010

I don’t know where to begin. . .

First, I am not Natalie.  I am Natalie’s father, Nathaniel, and I started this blog to track and share the progress of my daughter, our relationship, the workings of our family and, hopefully, document my daughter’s struggles and trials so that I can share them with her when she is older.  Hopefully, one day, she will be able to read and comprehend the stories that I hope to share and also understand what it is going to take for me to write this.  You see, this week Natalie has been pre-diagnosed with Autism.

Now, don’t get the impression that I am not married and that there isn’t a mother in the picture.  My beautiful wife Jakki is an important piece of this blog, but this will be written by me, so, the expressed opinions within this blog are the sole property and consequence of my personal thoughts and actions (intelligent or stupid as they may be).  I love my wife more than she can imagine.  I appreciate everything that she does for this family, and I am happy to be able to provide enough that she can stay home with Natalie every day.  Although, as you will likely find out within this blog, she is slightly crazy, and has many interesting quirks (only some of which I will publically share).  

This isn’t the first trial for our new family.  That’s why I spent ten minutes trying to figure out what I should put in place for a title.  I also had no idea what I actually wanted to write about, but I know that I need some kind of release or therapy.  This isn’t about me, well not entirely, this is about Natalie and her family.  Hopefully I will be able to maintain that effort.

So, let’s start from the beginning.  Natalie Rose was born on Friday the 13^th of November, 2009.  Even before that date she was trouble.  Jakki had a rough pregnancy, and I will maintain that she only survived the pregnancy on Burrito Supremes and Slurpees.  There were only a few foods that Jakki could keep down; Jakki had “morning-noon-and-night” sickness for roughly eight months of the year.  And when Natalie was ready to break out, she wasn’t wasting any time with the turning and diving out head first.  She was literally kicking her way out of the womb.  Coming out foot first is not preferred, so a cesarean was in immediate order.  She was little, only 6lb 8oz.  I don’t have the complete stats memorized (I think that’s a mother thing) but I know that she was small from the beginning.

Small but beautiful.  She had a head of platinum blonde hair and gorgeous blue eyes.  I will always remember that first moment, holding my baby girl in the waiting area while they stitched up Jakki.  She was and is perfect.

We were only in the hospital for a day when the doctors started messing with us.  The first pediatrician noticed “physical features that suggest the traits of Down’s Syndrome”.  Really?  Big head, small ears, large forehead; if that’s the picture of Down’s, then Jakki and I both may have it as well.  As we stayed in the hospital the other pediatricians ostracized her actions and apologized to our family, but the damage was done.  Emotional distress and an underlying worry started at that moment, and nothing would ever be the same.

The high of bringing home a happy and healthy baby was diminished and it was unfair.  It was two months of distress as we conducted genetic testing with a specialist in Sacramento to verify that she was not, in fact, diagnosed with Down’s Syndrome.  We had a happy holiday knowing that this was the news.

Now the next few months are a blur.  I was taking two classes on top of work, diligently completing my masters degree and required thesis, trying to finish up everything before Natalie grew up and needed daddy to read her stories and play games.  I thankfully completed my thesis, and maintained my sanity through the spring of 2010.  However, our family trials would continue. 

Natalie was always small.  She is now nearly nine months old and still fitting in three to six month sized clothes.  During our “routine” pediatric checkups she barely made the charts for size and weight.  Our pediatrician did not measure her correctly during her six month visit and, as a result, Jakki took her back to the geneticist in Sacramento.  After carefully re-measuring her, she was under the 5^th percentile, making her a case for possible dwarfism.

This was initially tough for me.  I am pretty tall, and so is Jakki, so I have always seen the world a little differently.  I am six foot three, so I have always been a little awkward; I hit my head on things, have a hard time getting under cars, or accessing low cupboards, and I have a high center of gravity, so I get frustrated with being tall.  However, I believe that it is much tougher being shorter.  At least I can get shorter by crawling and bending, short statured people have to rely on instruments (like steps and ladders) to be taller.  It took me a few days to dissect my feelings, and do some research and I have accepted that Natalie will be small.  In fact, I figured that we would be able to have just as much fun with the fact that we would be so opposite.  I came to terms, and hopefully Natalie would be healthy, just small.

So, we had a follow up meeting with the geneticist this week to determine if the growth concerns were hormonal, skeletal, or just a proportionate anomaly.  This will help us determine her condition and lead us to prepare for what would be to come.  The doctor gave us some good news; it isn’t a hormonal deficiency, so she isn’t missing anything in her physical development.  However the doctor gave us some not so good news, she is behind on her mental development curve, it’s not just her size. 

Jakki and I have noticed that her cousins are progressing beyond Natalie at the same stage in life.  Natalie hasn’t figured out how to crawl, she swims on the carpet kicking her legs and wondering why she isn’t going anywhere.  She has some quirky touch and feel activity, and she doesn’t pay attention to you when you are talking to her.  When we shared this information with the geneticist she showed increasing concern.  The doctor watched Natalie and recognized that she didn’t acknowledge me when I entered the room.  Natalie fussed and didn’t want to be held too tightly.  Natalie doesn’t want to interact with people for any length of time.  These are all preliminary signs of Autism.     

Now Jakki will continue to point out that I missed out on most of the conversation during that visit.  I had to step out of the room to prevent a panic attack.  Natalie’s condition, the new testing, the hot and crowded room, the hospital, and the lack of food and water all attributed to my uneasiness.  I hate the fact that I have anxiety, but I have little control over when the panic attacks happen.  So, sadly I missed out on the important information.   

The geneticist made one thing clear though, it is rare to see these signs so early.  Most programs don’t review children for Autism before 18 months.  However, early intervention is a key component to increased functionality.  All I know is that we have a lot of work to do in the near future.

So where do we go from here?  Now that I have stated the condition, and provided some background, I hope to use this site as a personal tool for sharing the progress.  I want to share some “ups” as well, so I would like to leave off with a few of the things that I love about my little girl.

Natalie loves to swim, she loves to smile, and she has the most wonderful giggle in the world.  She is a ham, so I call her “Hamlet”.  She knows the camera, what it is about and when it is pointed at her.  She has a full head of hair, and beautiful steel blue eyes.  She loves colors and words printed white on black.  She loves watching her cats play in the living room, and for the most part, she would rather sit on your lap than sit on the floor.  She rules her domain, and lets us know when she is not happy.  Fortunately that is not often the case.

Thank you for following along.  More to follow in the future . . . 

~ Nathaniel