Constant Miles Reflection

We are constantly reminded of where Miles is, how far he has come and how much work he has to do to catch up to the ‘proverbial’ curve. The other day, Carrie and I met with the Hickman School District to discuss early childhood possibilities for Miles. As the case has been lately, once we get our names out of the way, we delve into a huge list of questions. As we answer, both of us are churning hard to remember what he is doing and how he is progressing. On the one hand, I walk away from these meetings completely regenerated that Miles is making progress and that there are solid programs in the world to aid a little guy like him that needs the help. On the other hand, it’s an exhausting activity to recant his entire existence as though we are reading a doc’s chart while we prepare for the next procedure. Sometimes I blankly dart around the room and wonder what it would be like to just watch a child develop without the battery of therapists, diagnoses and recommendations for acquiring services. It doesn’t last long, and I don’t buy the ‘regular’ route with children anymore. More than anything, I’m completely enamoured with the coolness of our Miles boy. Finally, I walk away marveling at how much love Miles gets from those within and on the boundaries of his life and how much that will benefit him later in life. Perspective .. it’s truly all about perspective ..

No Talking Communication

The oddest thing about this autism spectrum is that Miles is nearly 2 1/2 Years old and he cannot look at me and say 'dad' or look at Carrie and say 'mom'. Overall, we are struggling to get him to mouth sounds to aid him in talking at some point. There are several things that collide through my brain when I think about this. First, I used to muse in the beginning of Miles' life that the first thing he would likely do is talk because that's all we do in this house. Secondly, I am putting my college degree major, communication studies, to the test in understanding the path we take as humans to communicate with each other. I have often said that 70 percent of our communication behaviors are non-verbal. Thus, I usually know what Miles is saying or feeling without him saying a word. Again, this is one of those scenarios that is hard to fully absorb when I hear friends and read articles that have kids at 1 or 1 1/2 speaking proficiently with a varied vocabulary. Many times a day I watch Miles frentically sign and wonder what his small kid voice will sound like when he begins talking. Furthermore, I can't wait for him to banter, dawdle and annoy me with his plentitude of words that I dream about like a far distant retirement that I hope I see sooner than later.

Part of a Newly Emerging Group

During our last transition meeting in December of 2006, all of our therapists and case managers were at our house on a very cold and snowy day. As we discussed Miles' IEP and progress, I noticed a cop out front beginning to give all 5 cars on the side of the road tickets. I quickly ran out to the cop car and explained that Miles' therapists were discussing his future. At this, he stoped and said that his daughter had sensory integration issues and he would wave the tickets. From there, we had a spirited talk about therapy. About 3 weeks ago, a couple came by to get a toy we were throwing away. They were on our curb asking us about this toy and mentioned that they were getting it for a neice that was in the autism spectrum. From there, a spirited discussion ensued about the conditions surrounding autism. In between these two random encounters, there have been others that indicate a growing bubble of new children in this country that have autism or exist in that bubble. There is something about this that comforts me in that fact that there will likely be more research, clinics, funding and support groups to help all of us trying to cope with something as big as the autism spectrum. More than that, I'm starting to feel like I'm a part of an ever expanding global villiage that is fighting to tame an unknown disease. I like the strength in numbers and it keeps growing and giving me more confidence that we will find cures and better therapeutic means to deal with the autism epidemic in this country.

Special Needs

So, we had the flu this weekend. It went like this: Miles signs for food. Miles pukes. Smiles. Signs for food. Cries because we won’t give him any. Fifteen more signs for food. Give in. Puke. Cries. Smiles. Pukes. Signs for food. Signs Tired. Pukes once more for good measure. Sleeps. Wakes. Signs “food” and kisses my elbow. Puke. Miles tickled pink laughing so hard because now I am puking and he thinks it’s the funniest thing in the world that I am making that sound over the toilet.

Joe comes home from a TV interview and asks, “How did I do?” I reply, “You looked” …puke … “beautiful” … puke. Me yelling at Miles to STOP crying for just a minute because I feel sick! Joe yelling at me to stop yelling at the poor sick baby .. Joe yelling at the baby to STOP crying so he can yell at me to stop yelling…What kind of mother am I??? Puke…Yell at Joe for not being sick…sleep. It was just your basic flu.

After I felt better, I started thinking about how a lot of this crazy life it obviously just being a Mom. I was thinking that I have a toddler (I’m going to stop calling him THE BABY) who has special needs, but I also have a 9-year-old with special needs because ALL kids have special needs? Zen, the one we call, THE OLDER BOY, is intensely smart. He needs constant challenges otherwise he spends all of his time playing video games or helping other people. He told me last week that he couldn’t decide if he wanted to go to the clinic with Miles or go take care of his ill grandfather? Which should he do? Could he do both? I asked him if he wouldn’t rather go to a summer camp for baseball or swim or something and he said he was too busy helping Miles learn new signs and that his gramps needed him. At first it just broke my heart that our lives seem to revolve around Miles and that I wish I had more time to learn with him about the math he loves or read him books…I think often how Miles’ needs will effect Zen and I worry and worry about it all.

My mother, the amazing Judy, covers therapy on Monday afternoons now so Zen and I can have three hours to go explore the world. So far all we have done is go see movies, which might sound like a horrid waste of precious time…But since we haven’t been to a movie together in over a year, it is simply delightful to hang for a few hours in a cool movie theater and not think about anything but pirates and penguins for a few hours with the other kid I have who has “special needs.”

48 Hour Blog

DAY ONE

So, I had a mini breakdown last week. More of a crying jag than anything else. I just couldn’t understand why I wasn’t handling all the therapy, all the tantrums, the lack of sleep or the inability to get anything done ever … better.

Why is it so hard, so tiring, so draining? I kept thinking about all these pretty, glowing and happy mom’s I see everywhere and I just couldn’t figure out why I felt so weak. Why it is all so hard for me, why I feel so bitter and so angry. Thankfully, finally I realized it IS hard, it IS exhausting, it IS depressing and I have every right to be overwhelmed. It made me feel a lot better to realize that I am only human in so many ways. This got me thinking, as I have often, that having a child with special needs is in so many ways like loss, or waking up and realizing you are paralyzed or blind. I know, it sounds horrible, but it’s like the death of expectation or the death of life as you knew it before. It alters every dream you ever had…it changes the relationships you have with every person you know from your husband to your parents to your other children. It changes how you do your job, your faith and everything.

The key to all of it is to not get stuck right there. It feels like a powerful whirlpool and it can be devastating. The key is to make new dreams, set new goals, get a new job, let everyone around you know how much you love them, but that you just might not be there for them as much. It is actually kind of cool when you really think about. All this thought led me to thinking about paraplegics, that guy who cut his arm off to save his life, people who live with cancer. There are so many heroic stories about people who thrive after trauma and people who choose to live better than they did before. I know that everything will get easier (ha! It better) and I know that I am unbelievably lucky to have such an amazing husband and supportive family and friends. I just worry about people who don’t and I wonder how they get through those difficult days. I am continually jealous of people who look at it all as a gift or a blessing and never question the path God has chosen for them. I am jealous of people who smile better than I and laugh more and find time to give back to the community. I guess when it all comes together at the end of the day, each of us handle this gift different.

So, my missive this week is to go ahead and cry. Some days just really suck and as silly as it sounds…do everything you can to make yourself better than you were before. It’s a lot better than sitting around being pissed off all the time.

DAY TWO

Did I mention that part of this whole emotional roller coaster is schizophrenia? One day you feel like everything is crap and the next day you feel guilty for feeling that way. You wonder what the big deal is. Therapy is not so bad and you feel enormously lucky to have such amazing therapists. They touch your life and the life of your family in amazing ways … every single day. Your child is beautiful and his laugh makes people giggle. Even people that frown all the time light up when Miles is near them. They reach out for him, they coo at him to see his smile and it is all amazing and so utterly beautiful that you feel inconsequential, like nothing in the face of the beauty that is your child.

Joe and I talk about how TV, movies and life, generally prepare you for pain. You are pretty sure you’ll live to see your parents die. The Lifetime network prepares women to be beaten by their husbands, schools them on criminal terminology, prepares them to be cheated on by their husbands and vise versa. In the back of our minds, we are all prepared to have a child who battles and overcomes cancer, or succumbs with untold bravery. But, it seems that nowhere are we prepared to deal with a child with special needs. I, more than most, am lucky in this regard, as my mother has worked with adults with different abilities in all ranges. So, at least I have a little bit of background. The point here is that I would imagine, with or without lifetime television, none of us are working from a script. So, we don’t even know how we are supposed to feel. Today, I feel like I have the most beautiful child in the universe and that is enough for me for today.

In conclusion, I firmly believe that Miles laughs much more than he cries and his inspired romp through this life is miraculous. Thus, I feel alive and vigorous by the strength and happiness that Miles carries on throughout his life. So, when he reaches over to give me a kiss at the end of the night with a huge, patent smile, I know that everything is worth it. Miles is amazing and his happiness erases all of those times of depression, trouble and doubt. That’s where I’m at.