Friday, October 14, 2011

noah chronicles. 6

You may be wondering why I am sharing all this. Or, more precisely--why now? There are many reasons, and I always knew there'd be a time that I'd want to share about our life with Noah. But, the time never felt right. Mainly, I want to share now because I want you to be part of our journey. I want you that know him to maybe understand him a little more. Also, I am sharing now because the story is getting better. Noah is growing. He is maturing. And, while that is incredible and lovely--I don't want to forget about the "before". I also pray that perhaps in sharing, another parent with issues similar to Noah's will be relieved to find out that their child is not the only one. Many of you have expressed deep concern and support as you read these posts. That has touched me deeply and I thank you.

I have often remarked that two things have never come naturally to Noah: joy and trust. He has from infancy seemed to be always tense, always awaiting the slightest provocation or hint of danger--and then finding it in the most trivial or confounding thing. We have worked long and hard with him on this. Reminding him to choose his attitude. Choose to be kind. Choose to be polite. Choose to respond with a happy tone as opposed to screams or anger. Choose to allow someone he doesn't know well the chance to become a friend.

So, when someone tries to tell me that they think Noah is okay, because "he seems so happy and normal", I choose to take it as a compliment--because I know how hard we have worked for him to appear that way. I also know how hard I work to make sure "the public" sees his best side.

All a parent wants (at least this one!) is for people to love their kids. I know (believe me, I do!) that Noah can be the most exasperating and out-of-line kid there is. I also know him to be deeply intelligent, fiercely loyal and tenderly affectionate. I know that he thrives on praise and holds himself to a standard of perfection. I know he loves to be able to help, loves any music with a good rhthym. I know that he can be endearingly goofy and extremely polite. So, I find myself trying to make the stars align so that whenever we are out in public, that Noah comes out. I try to keep my face relaxed and jolly, while inwardly my stomach is tied in knots--awaiting that unforeseen thing that could set him off.

From the time Noah was an infant and I began noticing his extreme sensitivities to everything, the taboo "A" word began lurking in the back of my mind. I would always just shove it to the side, confident that whatever was going on was just a mixture of "a phase" and a momma who wasn't doing things right. No child of mine could have autism.

As Noah passed the 2-year-old mark and still was presenting many difficulties where I would see other kids just "dealing with it", I began to face the facts. Noah wasn't like everyone else. He may never be like everyone else. He may never learn to control his emotions and impulses. I looked at those facts and found myself in a deep valley of grieving.

I grieved the dreams I had of what motherhood would be. I grieved the freedoms I had lost, and would perhaps never fully get back. I grieved for the judgements on us that we had endured and would continue to endure. I grieved not really knowing what to do. I grieved that this is not what I had expected. I asked "Why me? Why Noah?"

There are very few days that go by that I don't in some way grieve what is.

During that time, Noah's obsession was taking all his clothes off. All the time. I quit fighting it around the house, but of course would insist that he wore them to go places. Sometimes that was okay, sometimes it wasn't. Once cold weather hit, I had to make him wear clothes. I had to put his clothes on and safety pin his pants to his shirts. I often had to physically wrestle him to the ground and pin him there to get him dressed. He refused to wear hats or coats.

He also was obsessed with eating all kinds of things. Dried beans, dried pasta. Rabbit poop. Dog food. At one point, when I changed his diaper, I found over 20 of those red and white marker pegs from the Battleship game there in his bowel movement. He was extremely secretive while downing these things, too, so I was constantly running around behind him checking his mouth.

Potty training didn't go well, because sitting up on the toilet frightened him. He didn't get the point of the kid potty. He never told me when he had to go. I decided it was a battle that I would let go for later.

At the end of 2010, I began communicating with my cousin who is a Speech Therapist working at Easter Seals. I shared with her my observations and concerns and we began conversing back and forth. She talked about Noah having "sensory difficulties" and wondered if there was a place in Mexico that he could get taken to and be tested.

I was concerned about that for several reasons. A main one being that Noah is comfortable in English, he would shut down in Spanish-speaking environments. I didn't think a Spanish screening would be accurate. Also, in many ways, Mexico is at least 50 years behind the US, and I wondered if they would have the newest information on what would help Noah?

It was during that time that we just felt God orchestrating a lot of puzzle pieces together that were pointing us back towards the US.... guidance for Noah being one of the biggest.

Naked as the day he was born...

Happy, happy, happy!

Listening to a good beat...

Endearingly goofy:

Part 7 here:

Wednesday, October 12, 2011

noah chronicles. 5

Noah was not, in those years, much of a communicator. He wasn't even a pointer. He wasn't able to tell us if he was crying because he was too hot, or because a bug bit him, or because we weren't understanding him--or simply because he wasn't wanting to obey. It made discipline a struggle and every-day kind of things a huge frustration.

He also has emotional responses to things wayyy above what they should be. A blanket not being spread out in just the right way could provoke the same response as a finger shut in a door. The wrong color of cup, positioning a paper in the wrong way, opening the door, putting on his jacket--all of these things (and muuuuch more) could provoke ear-piercing shrieks and tantrums.


Here's an example from just yesterday:

Noah asked me to write out the alphabet as he does most days. He asked me to do it be switching the colors from one letter to the next. This time I got a little wild and decided to make a big Z. See below.

Would you know that Noah shrieked as if I'd hit him over the head with a baseball bat and began to get into tantrum mode. I said I was sorry for ruining his Z and made a small one, while making the big Z's tail into a smiley (also above). No dice. That only made it worse.

Fortunately, I was in a good enough frame of mind to see this as rather humorous. I know by now that the tantrum had everything to do with Noah having this vision in his head of what the lovely creation would be, and my wild and big Z just tore it apart.

So, I didn't scream back, I just promised to fix it and made the alphabet below.

Noah was much soothed by this now-perfect representation of his mental masterpiece. However, for the next half-hour or so, every time he saw me, he'd mutter: "No, no momma. No more big Z's. Bad big Z's." What a kid.


In those days, I never once uttered the words, "He is growing up so fast". Each day felt like a year. I would actually find myself wondering how old he was. "He must be 3 by now? No, he's 2? Ohh..." Looking into the years stretched out before me of life with my precious man overwhelmed me. Would this be how the rest of my life looked?

Noah tends to enjoy high levels of repetition, bordering on obsession. Once he finds something he likes to do, he does it over and over and over again until he pretty much completely abandons it for another passion. As a baby, I could predict his exact pattern of activities, since they were the same every morning. He was like a mailman on his route, visiting the same toys in the same order. He fixated on lining his box of cars up over and over again. He went through a Thomas the Train stage where every movie had to be Thomas, and even would watch the same episodes over and over on YouTube. I know every kid goes through stages of "things they like", but for him these things were taken very seriously--as though his life depended on it. And, I will say, the peace of our home often depended on it. Right now he is consumed with letters and numbers. He spots them everywhere, from silverware scattered across the table to a shadow on the ground. It is fascinating what he sees.

Sleep for Noah was a hard thing to teach him. What we finally got to work was a pitch-black, cool room with a fan turned on (for white noise) and soft, instrumental music playing. With, of course, his blankie in hand. Through the years, he has learned to sleep in rooms that aren't pitch-black and now demands a night-light. However, he is up pretty much as soon as the sun starts coming through his curtains.

Haircuts and nail trimming. Ay ay ay. I tell people it's a wonder Noah doesn't walk around with long, curling claws and hair down to his ankles. It is a struggle to keep him "groomed". From the time the hair clippers turn on until the time they turn off, we have an extremely emotional little guy on our hands. Rey stands in front, holding Noah's arms down and keeping his legs still with his own body. I stand behind, with one arm wrapped around his head, under his chin, and the other buzzing away as quickly as possible. Noah is bright red, screaming, thrashing and sweating until we are done. We all go away covered in sweat and hair.

For nail trimming, I sit Noah down in front of me between my legs. I put on of my legs over his legs and one over his free arm. I position the arm of the hand I am trimming against my chest and hold the hand as firmly as possible... trying to trim fast without cutting him. All the while, he is doing his best to pull his hand away and kick his way out of the restraint. Every time I position the trimmers to cut a nail, he screams in agony, "Owwww, owww! Stop, momma! All done!!" Can a person have sensors in the tips of their finger nails?? And, I will just put it out there--I have never cut him, so it's not like he's going off of some past trauma.


With Noah, his "issues" are hard, because they aren't "visible". His responses can just come across as--well, should I say it?--pure brattiness. As in, "If that mom would just consistantly discpline him, he'd be whipped into shape in no time." And, that's difficult to see written on the faces of hundreds while we are out and about dealing with these Noah things.

The impact of Noah on our family is, as I'm sure you are already imagining, huge. How much do we change our lifestyle for his sensitivities? How much do we make him just "deal with it" so we can get out and about? How do we make sure Aleni isn't lost in the shuffle? How do we make sure to not let "this" drive a wedge between Rey and I?

I don't think there is a cut-and-dried answer for those questions. It is, as are many things in life, an answer found in a lot of little daily decisions. It is found in taking time for Rey and I to see if we are on the same page with things. It is being willing to be wrong, if it means your family will be more healthy by changing. It is in stopping and being intentional. It is in not allowing yourself to use tiredness as an excuse.

My favorite moments are when they are together... and happy:

Maybe wouldn't know it by looking, but the people present at this photo shoot know that we were shooting between multiple stormy tantrums and lots of screaming. Oh, happy times.

Part 6 here:

Monday, October 10, 2011

noah chronicles. 4

To me, two of the most overwhelming parts of raising my little man has been feeling like ultimately it's up to me to calm him down, and being completely unable to predict him.

I tend to be an overly empathetic and analytical person when it comes to the feelings of others. This can be a burden and a blessing. With Noah, it has in great ways helped me to put myself in his place and try to see what he is seeing. Imagine what he may have interpreted from a situation and therein perhaps understand his reaction to it.

With Noah having such an exagerated and explosively emotional response to many every-day happenings, even my most empathetic side would often hit the wall of exasperation. Seriously? Really? Did you really have to explode for 2 hours over the fact we got a sucker from store A instead of store B?

Rey is the best daddy any kid could hope for, but I think since we came from such different parenting backgrounds--and because Noah spent the majority of his time with me--he had to wonder if Noah's outbursts had anything to do with the way I was raising him. He often wondered if I was sheltering him to much, if we shouldn't treat him as gently. However, from my experience--any kind of "in-your-face" parenting we tried only would backfire in our faces. So, this would often result in Rey taking Aleni while I took Noah in his "bad" times. Which, some days, were more than his good.

This would exhaust me, because I felt that Noah's emotions were directly plugged into my energy source. If I would have even the slightest frown on my face, he could end up in a pile on the floor. When I scolded him, I found if I pasted a big smile on my face and said with a happy tone, "That is a no-no. You should only write on paper," he would respond with an "I'm sorry momma," and a hug. If I frowned and said the same thing in an angry tone, he'd become a thrashing ball of emotions into the unforeseeable future.

I would at times hide from him, just so I could relax my face, stare off into space and think of nothing.

As you can imagine, this whole tug-and-pull of trying to draw that line between Noah's "unacceptable behavior" and what may have just been the result of a missed nap was often a seeming labor in futility. I would feel that I was pouring everything I had into raising this child into an obedient, respectful child--and receiving a child much worse than our neighbor children who ran free in the streets all day long. I felt like, "What is the point? Where are the fruits of my labor?"

I am also a social creature. I love to get out and see the world. Make plans at the spur of the moment, and hang out with friends. My chances of doing that became fewer and fewer once Noah entered our world.

Without being able to predict how he would respond to things, it made our outings much fewer, and much more limited in "time out". It seemed Noah coped best when the entire outing--from leaving to returning--took no more than 2 hours. It needed to be over no later than 7:30 pm. It also needed to be to a place that wasn't too loud, there weren't too many people over-eager to hold him and that he would be able to take on at his own pace. He didn't like being dirty, sticky or restrained.

Needless to say, not many outings fit that bill--especially not in such a warm, "touchy" culture like Mexico's. I struggled daily--not wanting to appear that I didn't want to be in the lives of our loved ones there, because I was dying to get out. But, also knowing that in many cases it would be worse if I went, because I'd be in the other room trying to calm a thrashing 2 year-old.

Not being able to predict things, not being able to make plans wore down on my soul like nothing other. I love planning parties, get-togethers and the like. I love being able to put a date on a calender and look forward to it. But, it seemed nearly everything I would plan would be cancelled because Noah was having a "bad day", or we'd do it and have an absolutely awful, I'll-never-try-that-again kind of time.

One day, we decided to hop in the car with Rey and accompany him while he drove his mom and brother out to see some relatives. The relatives lived about 2 hours away, out in the country. I convinced myself that we could do it. That 2 hours in the car was nothing. Noah would love seeing all the goats, cows, cats and dogs on daddy's uncle's farm. (Noah at that point took animals over people any time). And, I'd be scoring points with the in-laws.

So, the four of us loaded into the mini-van along with my mom and brother-in-law. Noah had a 30 minute tantrum in his room before our leaving. The trip there wasn't too horrible. We got to the farm and went out to see the different relatives living in the pueblo. The pueblo was a dusty, farm town at the foot of some mountains. Beautiful country, except for a guy who doesn't love dust and dirt.

We went to several different houses, stopping to socialize for 30 minutes or so before moving on to the next. When we got back to the uncle's house, it was time to eat. I could see all the back-and-forth was getting to Noah and Aleni was getting fussy. I wanted to try to put her to sleep, and did feed her and lay her down in their bedroom, pulling pillows around her so she wouldn't roll off the bed.

Noah became enraged that he wasn't allowed to throw balls into the well and could not be calmed down. I ended up having to hand Aleni (who was crying also) off to Rey so I could shut Noah into that bedroom. He would scream, throw himself to the floor, kick the doors and walls until he would grow tired. Then, I would go in and ask him if he was ready to say he was sorry and behave. He would go into another tirade. This lasted perhaps an hour. A line of various relatives would come into the room, trying their own methods of calming Noah--and would narrowly miss being kicked by Noah's flailing feet. Can you imagine how embaressing this was?

He did finally calm down and I signalled to Rey it may be a good time to head back home. He said ok, we just needed to run his mom down to another relative's house. In typical Mexican fashion, this turned into running to about 3 different relatives' houses with 2 30 minutes visits in each. I was getting progressively more tense, awaiting another tantrum, and trying to look as though I was thoroughly enjoying myself.

When we did point the car homeward, we still had Rey's mom and aunt on-board in the backseat, because they wanted to be dropped off at another person's house. And, Noah was in a completely different dimension by now. Out of control and just screaming and thrashing. I was sitting next to him on the front bench, trying to speak sternly to him while keeping him from hurting me or himself.

Then, I heard the ladies talking softly behind him, "Oh, poor thing. She really struggles with hin, doesn't she? Oh, yes she does. You can really see that."

Mmm. That's what every mom wants to hear. Indeed. After we dropped the ladies off, I hurled Noah's car seat into the back bench, strapped his still-screaming body into it, and clambered into the front seat, Aleni in her car seat on the floor between us. I turned up the stereo as loud as I could and sang to drown out the screaming and head-banging in the back seat. Sang to keep from screaming or crying myself.

And that, ladies and gentlemen is why it is hard to plan an outing out with my lad.

At his 2nd birthday party:

One thing he did like from daddy's uncle's farm: Getting a new kitten! (Does his face bear traces of the rough past hours he's had?)

Perhaps he's not a fan of the dusty, sweaty kind of dirty-- but muddy wet? Oh, yes please!

See? Toldja. Animals over people, folks. Animals over people.

And, I just had to put this one in... Since I've only been putting in cute photos--I figured you had me tellin' tall tales.

Part 5 here: