An open letter to Apple

An Open Letter to Apple

Dear Apple,

          I am the proud father of a daughter with Autism. Her name is Abbey (short for Abigail), she is 2 ½ years old, and was diagnosed this past fall.  In case you aren’t aware: “Autism spectrum disorder (ASD) and autism are both general terms for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors “  (taken from AutisnSpeaks.org, article title What is Autism?). Since then, we have been working hard with our local school district and other outside agencies to help, and she has made substantial progress over the past several months.
          Through various social media outlets, as well as from my daughter’s teachers, I had heard that the iPad had a number of apps specifically designed for children/people with Autism, helping to teach them basic life skills (language development, potty training, even using it as a communication tool for those who are more severe cases).  After a bit of investigating, and seeing her teachers use it with her during their home visits, my wife and I finally decided to buy one for her, to continue to work with her over the coming summer months.  Obviously, the price was a hurdle that we had to conquer, but we finally went out to our local Wal-Mart and made the purchase.
          We have only had our iPad for about a month or so, but in that short time, I have seen my daughter learn new words, discover new animals and their sounds , made substantial progress in the area of potty training (something my wife and I have been dreading for months), been able to watch Sesame Street episodes (which helped greatly on a recent 6 hour road trip), and have fun in the process.  While I am indebted to the individual developers of those apps specifically, I am indebted to you for your development of this technology, because without it, none of these things would have been possible.  I am excited to see how much more we will be able to teach her in the future, and am hopeful that someday, she will be able to function normally and contribute to society in profound ways in the future. In short, thank you.

Sincerely,

Nick Scutari

Daughters, Guitars, God & Autism

Well, since the semester is (finally) over, I have had time over the last number of days to do those things that I never had time for while still in the midst of spring classes. Things like play my guitar, play more with my daughters, make banana bread, and do some reading that isn't seminary-related.  The one that I enjoy the most has to be playing my guitar.  For one thing, I've been playing since I was a teenager, and it's just something I enjoy doing.  For another, it puts my older, 2 1/2 year old daughter in a good mood.  When I get the guitar out of the closet, she starts screaming "MUSIC!! MUSIC!!"and her excitement continues from there. (More than once, I've used it as a re-direct tool when she starts acting out because of her Autism).  My almost 6-month old daughter Zoe either stares at me or the guitar as I play, or it puts her to sleep (haha).
One song in particular that I play is John Mayer's "Daughters."  I've been playing the guitar part for years, but only recently was able to pick up the lyrics and play it all together.  What struck me about this song, though is its message. The obvious meaning to the song is that the guy is in love with a girl who was hurt/abused/abandoned by her father, and now he's gotta figure it out.  But it seems like every time my own life circumstance changes, I find myself coming to see it with a new meaning.
In college, I heard it as a love song to my then fiancee, now wife. Not that she carries any kind of baggage from her father, but as I would listen to it, I really did feel like she was "the girl who put the color inside of my world."
As time went on, and we had our first daughter, Abbey, I heard it in a new way from the perspective of a new father, whose daughter I knew was going to change my life in substantial ways.  Then she was diagnosed with Autism.  I got upset, I cried, I got angry, I yelled at God. I asked "why?" and said "it's not fair." And then I accepted it.  Now, as I hear (and play) it to her now, I hear it in a new way once again. The "girl who puts the color inside of my world," is still my daughter, but she does that because of her different perspective and experience of life.  It has pushed me to appreciate life in a new way.
As I was playing for her yesterday, I played and sang the song once again, but this time, became overly aware of how much influence I have over my daughters, and reminded me of the responsibilities I have to them as a parent, beyond the day to day stuff.

So there it is. Keep looking up everyone.

Much love,

Nick

There's more to life than seminary...

Well,

          At times I honestly never thought this day would come.  I've been going to school at Asbury Seminary for my M.Div since last fall, and this second semester has to have been one of my more difficult ones as a college/graduate student.
          Trying to figure out how to do homework with two kids has proved to be more challenging than I thought, and it's forced me to plan my time much better than I used to.  Of course, I still have had to stay up until 11 or midnight to get stuff in. But I learned that with a little planning, and working on it a little bit at a time, I wasn't as stressed, and was more productive in the time that I did spend on it. Of course, by the time I got the hang of it, it was the last week of the semester. But now I know what to do in a few weeks for my summer NT Greek class.
          Of course, my daughter, Abbey's autism also played a factor.  When she was having her "extra autistic" days, it made it more difficult to get stuff done. Between not sleeping well, the autistic fits, the screaming, and hitting her 5 month old little sister, there were days when I got nothing done at all.
          But now, I breathe a sigh of relief, because I turned my final assignment of the semester in last night.  I've designated today an official "day of rest," and Steph and I have nicknamed it the: "day of awesomeness." We're going out to wander around the mall later, probably go out to dinner, and then see the Avengers, which we've been waiting to see for weeks. I've heard some mixed reviews, so we'll see, but I'm hopeful.
          In sum, I feel very blessed that I have the ability to go to seminary, and I have learned a lot, but I'm also grateful for time off, too. I think I'm finally beginning to understand what Paul meant when he said: "I can do all things through Christ who strengthens me" (Philippians 4:13).

Grace and Peace,

Nick

When life gets real...

Right now, as I sit with Abbey while she falls asleep, I've been thinking about today while listening to John Mayer's "Half of My Heart." If anyone who reads this isn't already aware, my daughter, Abbey, was diagnosed with Autism last fall, right around the time she turned 2.
We have been working with the local school district's early childhood education center, and Abbey has learned so much in 6 short months. Recently, the Autism specialist at school suggested to us that we take Abbey to another place in town, called The Village, who work with kids like Abbey (they offer other services as well), and after a few observations if Abbey, at school and at their center, Steph and I went to find out the results.
Now, a point of clarification here- Steph and I found out about Abbey's Autism through the school last fall. It's not like we didn't know what was in store. But we were hopeful that she would be high-functioning, or even borderline PDD-NOS (kids who show SOME but not ALL the Autism symptoms). Today, those dreams were dashed, as we were informed that Abbey shows all the symptoms of Autism (with the exception of eye contact).
For our family, it means that Abbey's chances of living a somewhat normal life go down substantially (statistically speaking).  To help put it in perspective, let me put it this way: Imagine not knowing what your child's future looks like. Not knowing what they will or won't be able to do. High School Graduation? Prom? College? Getting Married? Having a career? We just don't know. Obviously, we still cling to hope, and we look to the future, but the future is scary when you don't know what that will bring.
Obviously, it's something that Steph and I have known about, but The Village can give a medical diagnosis, which is a bigger deal than the one we got from the school. One isn't more accurate than the other, but the medical diagnosis is more formal. As we walked out of our meeting, I felt as if I had been stabbed. I felt the same way when the new CDC numbers for Autism came out. "1 in 88 children, 1 in 54 boys and 1 in 252 girls," are the numbers I read. My first thought was: "seriously? 1 in 252" That stinks." As I have these experiences, I feel like I'm getting my heart broken all over again. I guess that's just normal for something like this.
And as Steph and I went to Target to look for a few things, "Half of My Heart," kept playing in my head: "Half of my heart's got a grip on the situation, half of my heart needs time..." Maybe it's far fetched. I don't care. But listening to this song in light of my daughter's Autism has actually helped a little bit.
To be honest, I don't really have a conclusion to this post (maybe that's a confession, I don't know).  But I do know that I love my little girl very much. Period.

Good Friday- A day of death and a day of life.

You know, this morning I got to thinking about today- how it's good Friday. I skimmed the lectionary texts on my iPod briefly as I was eating breakfast, and I was reminded of another verse in Paul's letter to the Colossian Church:
"Put to death, therefore, whatever belongs to your earthly nature: sexual immorality, impurity, lust, evil desires and greed, which is idolatry. Because of these, the wrath of God is coming. You used to walk in these ways, in the life you once lived.  But now you must rid yourselves of all such things as these: anger, rage, malice, slander, and filthy language from your lips," (Colossians 3:5-8, NIV 1984).

Today, when we read the story of Jesus death on the Cross, and as he cries out to God "It is finished," our sin is covered. Jesus died an earthly death to pay for the sins of humanity. Jesus has died- and now we must wait patiently for Sunday to encounter the resurrection story.
But shouldn't we recognize today as a day of death?
Shouldn't we, too, declare today a day to "put our sin to death?" and experience the forgiveness of sins he so freely offers us as we wait for his resurrection story this Sunday?

Grace and Peace,

Nick

Abbey's Autism and my reflection

So I know it's been a while since I've written on here (I seem to start all my entries that way, haha), but here goes.

For those who are not aware, my two year old daughter, Abbey, was diagnosed with Autism last fall. We have been working through our local school district with an Autism specialist, and various other specialists (all behavioral therapy) to help her engage and talk more. We have seen great success, and Abbey has come a long way since her initial diagnosis, and my wife and I have been optimistic as to what her future holds, but we were given a bit of a reality check today.

The last few days have been especially trying in the Scutari household. We have seen Abbey's Autism really come out, more so than usual. And I'm not talking small little meltdowns like we have to overcome every so often. I'm talking crying for a half an hour at bedtime because she's exhausted, or being overstimulated at Wal Mart and refusing to be touched or comforted.

For those of you who are parents out there understand being able to provide comfort to your children when they upset. For Steph and I, when Abbey gets overstimulated, she wants nothing to do with us, to the point where she will cry and scream louder and push us away if we try. These last few days, specifically, almost every night Abbey has been so tired she has had to cry herself to sleep, while Steph and I sit idly by and have to watch it, unable to bring comfort to our little girl. Since overstimulation is a sympton of Autism, Abbey has lately taken to wearing a baseball hat and sunglasses everywhere, to help block some of it out.

So the Autism specialist (who has been awesome to work with) was over today, and mentioned to Steph that as Autistic kids get older, their sensory issues (over stimulation from noises/lights/people around them) get worse. Maybe it was wishful thinking, perhaps we were just hoping for the best for our little girl, but either way, those dreams were dashed today when Steph found that out. It serves as a painful reminder of Abbey's reality, and always brings me back to reflection.

I never imagined in a million years that this would happen to my family and I, but, here we are, nonetheless. There is nothing I wouldn't do for her, and yet, I know that sometimes there is literally nothing I can do that will help.

So, we simply take things as they come- one day at a time, hoping and praying for the best, asking that God would grant us patience, and comfort for Abbey.
I am now thoroughly convinced that God's love is deeper and more profound that I ever could have imagined. We have been blessed by our daughter, and while it can be trying at times, we love her all the same.