Baby

Holy Cow, You’re Two!

by Mary on May 5, 2011

Two years ago on this day, I went into the hospital to be induced with what the nurses were calling a “BIG baby.” When the nurses, who see pregnant women every day, start talking about how big the baby could be, it’s a little startling. Well, the nurses were right, and Dale Jr was a giant baby!

And now, at two, he’s a big boy. He doesn’t really look like a baby anymore – now he looks like a toddler who is really on his way to being a child. The only time Dale Jr looks like a baby now is at night, when I dress him in a sleeper. I do that intentionally, just so I can pretend he’s still little. (We had planned to have pictures made last week or this week, but then the plague crashed the Flashlight household, and all Y-chromosome-owning people were hit very hard. We’re going to try sometime in the next two weeks with the same lady who did our awesome pictures from last year.)

I wrote a comparison piece about the boys when Dale Jr was 3 months old. The differences were startling even then. They are more so now. We see things we have never seen from the J-man. When Dale Jr first picked up a play phone and said “Allo! babble babble babble, OK, bye-bye” I was shocked.

So let me tell you all about this brilliant beautiful boy, who has enough words for several children. Dale Jr wakes up happy almost every day. He likes to wake up and play in his crib with someone popping in every few minutes until he’s ready to get up. He holds his blanket and sucks his thumb, and is peaceful. After I dress him for the day, we go downstairs where he immediately asks for either Rachel (Signing Time!) or Pinky Dinky Doo, although I tell him I get to watch my own show first thing – yay news for old people. He eats something for breakfast, but seems to have some attention deficit issues there – he eats 4 bites of applesauce, then asks for yogurt and has 1/2 of it, then asks for toast and only eats the buttered part… all while asking variously for juice, milk, and/or water. (He doesn’t yet know there are other things to drink in our house!)

When the J-man was little, Tim and I swore we would dance the tango if we ever had to tell a child to be quiet for just a little while. Honey, we need to take some lessons, because Dale Jr can talk and talk and talk. He says his ABCs and counts to 10, and signs a lot of words, and asks for different Signing Time videos by name (NiceDoMeetYou – “Nice to Meet You” – and HappyDayYou – “Happy Birthday to You” – are current favorites). He picks up any handy object and pretends it’s a phone, although he won’t talk into a real phone when he knows someone is on the line. He brings books to us to read, and will point out letters in the words, or will pretend to read the book to us because he has it memorized (OH wonful sounds Misser Brown do). If you sneeze or cough, he says “BessYou” – showing us that he really is listening. The other day I realized I would have to be more careful about my own words when I said something about “stupid people” and while we were in Target he kept saying “stupid people” as we would pass someone. Oops.

The joy that Dale Jr has brought into our lives simply can’t be described. He is the happy-go-lucky child that I don’t think Tim or I ever were. He still takes a nap every day, for which I am so thankful I don’t know what to say. He goes to bed at night with usually nary a peep, and only wakes up during the night if he is sick. People stop me in public to tell me how adorable he is, and all I can say is “Thank you – we think so.”

Every night, before I take Dale Jr up for his bath and bedtime, we do a bedtime routine, where Tim brushes the little guy’s teeth and holds him for a few minutes. We execute the “Family Sandwich” hug we learned from Pinky Dinky Doo. He says “I love Daddy and Mama.” And then he says “Night night Daddy.” And we climb up the stairs for bath and bed… so we can do it all again tomorrow.

Happy second birthday baby. We love you.

Dalejr2

Dalejr3

Dalejr1

{ 5 comments }

Two Be or Not Two Be?

by Tim on March 13, 2011

[This is a post written in two different eras of our lives. It's about the question we wrestled with for so long regarding whether to have a second child, which I thought of as "Two Be or Not Two Be?" The first part contains some thoughts I wrote in 2009 about three weeks before Dale Jr. was born. The second is reflections of where we are now.]

April 17, 2009

One of the most complicated and difficult decisions Mary and I have made together is whether and when to have a second child after our J-Man. We knew from before we got married that we wanted two kids. We understand ourselves well and accepted that our ability to provide the kind of attention we wanted to our children would drop exponentially after two, so that would definitely be our limit. It also felt like a nice, round number to us since, at least in theory, it meant that each of us could give one-on-one attention to our kids at any given time. Theory and practice often diverge someplace, but there is still value to us in the idea.

That sounds dynamite in theory until you add having a child with autism into the mix. It’s oddly common among parents I know that they have two children with their youngest child being autistic. It’s not much of a sample size for sure, and I’m not advancing any sort of theory here. For whatever reason, that just seems to be how it happens with parents around us. We have until now been the exception, and one that more people than just us have noticed.

One even more common trait that parents don’t really like to discuss is that for many of them their last child – no matter how many they have – is autistic. It’s not a dirty secret; it’s just something you quietly nod your head about and accept as an understandable decision. The time you invest in your children’s growth and well-being is immense. But it’s this particular issue that has piqued the curiosities of parents – with or without autistic kids – with regard to our decision to have another child after the J-Man.

Thankfully no one, at least to our faces, has questioned our judgment, though I imagine a few may have amongst themselves. But as with many things, we acknowledge the opinions of others and just move on with our lives. They had nothing to do with our decision.

I don’t recall us ever seriously considering not ever having a second child. There were a number of times we uttered, “I don’t know whether we can do this again” during the five-therapies-a-week periods. I know in deciding the timing of when to have a second child, there were plenty of days, weeks, and months where we quietly acknowledged that it wasn’t time yet.

Then there’s the thought no one is really proud of but every parent of an autistic child considering having another kid thinks about. Might as well be honest about it.

What if we have ‘another one’?

Obviously, parenting an autistic child is not some sort of disqualifier in having more kids. Plenty do. But you do have a huge decision to make with so many variables that it becomes an almost unsolvable equation. Studies are indicating that if you have an autistic child, you have somewhere between a 1-in-10 and 1-in-20 chance of having another. How do you feel about this? Will you be able to keep the level of attention going that your autistic child needs? Are you concerned about your ability to devote enough attention to each of your children? Can you afford care for each of your children? How will our child react to a new baby in the house? The list of questions can go on and on. You can paralyze yourself with them. And there are no clear answers. And I hate to disappoint you, but there never will be.

For us, I think it became a statement of faith in our relationship. Little did we realize how almost prophetic our wedding vows would become.

We shall keep together what share of trouble and sorrow our lives may lay upon us, and we shall hold together our store of goodness and plenty and love. When our way becomes difficult, I promise to stand by you and uplift you, so that through our union we can accomplish more than we could alone. I promise to honor and care for you, to speak the truth to you in love, and to cherish and encourage your own fulfillment through all the changes of our lives. I will stand beside you in joy or in sorrow, in ease and in conflict, putting the commitment we make today above any obstacle that we may face. This is my solemn vow.

We declared that day that we believe we can meet any challenge, and we realize now that our belief in that is stronger still. We have become pretty good parents when faced with a huge challenge. We’ve overcome and even thrived because we’ve discovered the frequent joy in these challenges. Most importantly, we’ve discovered that our J-Man is perfect the way he is and so full of love that it amazes us that his little body can hold it all in. And we believe our love for him can transcend those challenges and help us regardless of what comes next.

We did decide to have an amnio this time around. I was a little hesitant about this because while I know the risk to the baby in an amnio is very low, I’m not one who fully appreciates those kinds of statistical nuances. It was quick and fairly easy and we had the preliminary results in a couple of days – negative for all the quick and obvious stuff. We received the full report a few days after that, negative for everything they can test for. I must say that I liked having the amnio done more than I liked the idea of doing it beforehand.

We know there’s no test for autism, nor are there tests for a host of other health issues that might be part of his life. Life has few guarantees, and waiting on them will just do you in. It is nice to know certain things, however, even though nothing the report could have said would have affected us having the baby. Our rationale was that if something came back positive, we’d have time to prepare. Given how most of our lives are shaped by autism and the J-Man’s many needs, if the arc of our lives was going to have to bend toward another direction, we needed to know.

I am certainly not saying everyone in this situation should decide to have another child. This is simply how we arrived at our decision. We are nervous and excited, but most of all, we are deep-down at peace with our decision and can’t wait until we get to welcome our new little wonder into the world.

March 13, 2011

Dale Jr. is almost two now, and we have long since passed the point where we remember much about life without him. So much of what we worried about then seems like a distant memory now.

We got off to a sometimes rocky start, and our J-Man did regress pretty significantly for most of a semester at school. But we were determined to get us all out the other side, and we did that with the support of so many wonderful people. That’s as much a testament to the J-Man’s courage and determination as anything.

Is life with two challenging? You bet, but whoever said ‘challenging’ is by default a negative we should all avoid may not understand the concept very well. Great challenges often produce even greater joys.

Dale Jr. is pretty easy-going, has a wonderful sense of humor, is kind and loving, and is adored by everyone who meets him – just like they should! Many days feel like we have to relearn parenting, but that’s to be expected. Both our kids grow and change quickly. Every day brings a new discovery.

Life is often far more chaotic than I would prefer, but that’s largely about me and my still developing skills at coping with unpredictability and time management (such as that ever can be managed). But we’ve learned that we can fly pretty well by the seat of our pants and figure out much of what we need as we go. It calls forth the best of who we are and can be, and that is a wonderful thing.

We made the right decision for us at the time in which it was right for us. It’s important to keep both those things in mind as you think about having more children. This is true whether your children have autism, something else, or are considered ‘typically-developing’. I believe we do have a responsibility to our children to make decisions that are right for them. I definitely don’t think it should matter one bit to you what we’re doing or what anyone else decided to do. You have to look at your own relationship to each other as spouses and to your children as parents, your children and where they are in their lives, and the time and circumstances of life you are in right now, and then make the best decision you can based on that.

This is likely not the straight answer you were hoping for, but there’s never going to be an easy answer. If I have any guidance from there it’s to say, acknowledge those feelings of discouragement, uncertainty, overwhelm, and fear and patiently look for those more quiet moments where reflection is possible. I know in our chaotic lives that those can be very rare, but even a few seconds here and there can be enough. In time, you can gather up enough of these bits and pieces of reflections out of which the insight you’re looking for will arise.

Trust that you will make the right decision for your family, and I believe that will put you in a frame of mind where you will.

{ 3 comments }

The Second Time Around – Having a Child Not in Therapy

by Tim on March 18, 2010

I realized the other night that the second anniversary of what we’ve called Diagnosis Day is upon us. On that gray, March day two years ago, the doctor said the words “diagnosis of autism”, and we jumped down the rabbit hole into this grand adventure. It’s hard to comprehend how far we’ve come in those two years.

But really it started long before that. The J-Man began feeding therapy at 9 months old. We had an evaluation just before that through our county’s child developmental services agency because he was showing significant sensory aversions not only to food but to all sorts of other things. He seemed ill at ease with many things around him. Something just didn’t feel right to us.

The evaluators referred us to a feeding therapist, and off we went on a road of diverse therapies that’s run the gamut of acronyms and has continued ever since. A little over a year-and-a-half after we started that first feeding therapy, we took the on-ramp onto the autism highway, and here we are.

Dale Jr. is now about 10 1/2 months old. It has been like learning how to parent all over again. He eats everything in the house; there’s almost nothing we give him that he won’t eat. We still catch ourselves being completely amazed by how well he eats. He even self-feeds finger foods. He mimics us, uses a few words and signs a little bit, intentionally asks for some things, and shares his interests with us. He’s proving to be quite a daredevil, he explores everything, and he wants to be the life of the party wherever he goes.

We’ve noted many times how very different they are. It’s a wonderful thing to have two such complex, wonderful, and unique little people in our house!

And he’s about the age we started the J-Man in therapy. This fact isn’t lost on us. We are so programmed at this point to look at every part of our day in terms of the therapeutic that we sort of don’t know what to do when things are just moving along fine with one or both of the boys.

I realized that we’ve been at this a while when I praised the baby for his skillful bilateral coordination and object transference and developing his pincer grasp so rapidly (which is wonderfully useful as he eats Cherrios on his own while we do kitchen chores). I have no idea most times whether he developed any of these or other skills ‘on time’ or not, though from a few years of therapies I know the technical names of many of them.

The term ‘developmentally appropriate’ is usually lost on us. I’m not sure we’d know it if it bit us. Perhaps we’re becoming more at home with the mystery of it all. Our two boys have changed us in very different ways, and we know we have more mysteries still ahead of us than we do behind us.

As they say, “‘Normal’ is just a dryer setting.” We get the privilege of experiencing a completely new parenting adventure, and we have two wise little teachers who will help us learn and value all the diverse and beautiful gifts that make us human. The J-Man does things that boggle our mind. He’s only beginning to manifest many of his incredible gifts, but he has already changed the lives of so many for the good, especially ours. And Dale Jr. is quickly following him down that path.

We have two boys who share perhaps the most important gifts of all. They are loving and kind, they brighten every room they enter, and everyone who meets them loves them immediately. Regardless of where the adventure takes us next, we start from this foundation, from which anything is possible.

{ 0 comments }

Like a candle

by Mary on December 5, 2009

For the past few days, we have been schedule freaks. OK, everyone except Dale Jr. He does what he does, when he wants to do it! For everything else, we have pre-planned, pre-made where available, and pre-decided, all before the kids get out of bed in the morning, or after they go to sleep at night.

The J-man’s teacher (hi Mrs. Jennifer!) and his OT (hi Mrs. Jamie!) came over on Tuesday afternoon, and had some good, solid, concrete suggestions about his current sensory issues. The suggestion that we all thought would be the best was to use a picture schedule at home like they do at school. I mean, we already had what we thought of as “routines” but those routines seemed to leave a lot of downtime, and downtime is NOT what the J-man needs right now.

So, man, have we kept him on track! And it seems to have helped, to a certain extent. We’ve still had the “stop, drop, and flop” happen a few times but there has been less stimming and random screeching. WAY less putting hands over ears. I am, however, tired of Pinky Dinky Doo, since we can only have the TV on during the scheduled TV time now, and that’s all the J-man has wanted to watch. Thankfully, he asked for Rachel today. YAY for Signing Time!

We’ve added an enormous amount of brushing. It seems to calm the J-man immensely, and he really likes it. I think if he could request it, he would. In fact, sometimes when we’re done with the “brushing and squishing” routine, he hands the brush back to get whoever is doing it to start again – and so we do.

We’ve changed our eating style – we used to eat in the living room, on tray tables, watching the evening news. My mother will be pleased to know that we now eat at the table, together. This means I have absolutely no idea what’s going on in the world right now, since, as I mentioned, if the TV is on, it’s Pinky Dinky Doo. I don’t stay up late enough to watch the 11 PM news. Tim is up that late, but it’s because he’s working. With all of the hands-on parenting, he’s not really getting any work done during the evening the way he used to. Yeah, our schedule still has some kinks to work out (like, when to MAKE DINNER for the parents) but I’m hoping we figure something out soon because otherwise, Tim just doesn’t sleep, and that’s bad.

Last night, it all came together because Dale Jr took a nap right about the time I needed to put dinner in the oven. The J-man and Tim were outside, swinging, and I scurried around getting everything ready. Right before dinner was ready, Dale Jr woke up, so while I fed him, Tim got dinner out of the oven, then I finished everything off and we sat at the table. The J-man finished his nuggets and applesauce quickly, then asked for “sticks.” When I gave him the container of sticks, Dale Jr was starting to get fussy sitting in his high chair.

Tim and I have given up talking during dinner because we’re shoving food in so fast, but we weren’t anywhere near done at that point. The J-man calmly picked up his container of sticks, walked around the table, sat down at the chair beside Dale Jr’s high chair… and stayed there, looking at him while eating. Since Dale Jr ADORES his big brother, that was enough to make him happy, at least for long enough for us to finish eating. The J-man saw someone in trouble, thought through how he could make it better, and did so.

That action brightened our day. It was just a little light, a match struck, but it stayed lit long enough to light a candle. I look forward to many more candles burning brightly.

{ 3 comments }

Simple Gifts

by Tim on August 31, 2009

This has been an eventful week here in the Flashlight House to say the least. Late last week we celebrated the anniversary of Mary’s 29th birthday! And tomorrow the J-Man turns 4. I can’t believe it; time goes by so fast.

We don’t do much in the way of birthday presents or parties around here really. We’re a pretty low-key bunch. About all Mary and I do for each other is the one not having the birthday goes and picks up takeout, we try to spend some unhurried time together, and we each get some additional me time that typically involves one of us getting a couple of hours out of the house sometime around our actual birthday.

The J-Man seems like he really couldn’t care less about birthdays. Actually, birthday parties routinely upset him. We’ve gone to his friends’ parties, and – understatement warning – rarely does he enjoy himself much. Strange places, crowds, noise, lots of running kids, etc. just don’t do for him, which I can understand. We go because we feel like he needs some practice at social events, but we know when he’s had enough and adjust accordingly. I can’t remember any of his birthday parties where he didn’t just burrow into somebody’s shoulder most of the time.

The concept of presents to unwrap doesn’t seem to click with him either. His general lack of attachment to things doesn’t lend itself to being excited about gifts on his birthday, Christmas, or whenever. And in what seems endemic to autistic kids, he absolutely hates the Happy Birthday song. He covers his ears and retreats into himself. Somebody really needs to do a research study on this phenomenon.

So, we decided to forgo a birthday party for him this year and celebrate it more in his style rather than in the way I think people (and for a long time us, too) expect it should be. We bought him a new swing for the swing set outside, one with a high back and built almost like a small, plastic recliner. He can’t use kid swings because when he gets excited and stims out, he lets go of the swing and flies off. (Thank God for mulch…) Obviously he’s too big for a toddler bucket swing. This new one is rated up to at least 100 lbs and has a five-point harness.

The weather is supposed to be absolutely beautiful tomorrow afternoon when he gets home from school. (70s in early September?!) What will be our birthday party then? Swinging outside – just us and my dad. Simple gifts. But the kind he loves most of all.

These past few days have gone like that too – one small but unspeakably wonderful gift after another shining through even in the midst of the craziness of everyday life.

[click to continue…]

{ 0 comments }

A Tale of Two Babies

by Mary on August 19, 2009

[In case you're wondering about the whole 'Dale Jr.' thing, for you non-Southerners, the son of Dale Earnhardt - a stock car racer of Biblical proportions - is often referred to as Dale Jr., but originally his nickname was Little E. So it looks like our Little E is now Dale Jr.! If that made no sense, just go with it.]

It may have been the best of times. It may have been the worst of times. I really can’t tell you. I remember very little of the J-man’s first year. It was really a blur. I was SO TIRED all the time then that now, when Dale Jr does something, I ask Tim if the J-man did that too… because I truly can’t remember. So, for your reading pleasure, a comparison of the two so far:

Sleep:

J-man: what’s that? Why would you think I needed to sleep? I have to be up to eat every 2 hours anyway, so why would you force me to try to nap (for 25 minutes initially, although we did get that number up to FORTY WHOLE MINUTES)? I sometimes will only sleep while in a carseat with the car moving, so Daddy perfected “driving naps on 540.” Also, putting me down “drowsy but awake?” HA HA HA HA HA. Seriously, just nurse me to sleep, then hold me for at least another 30-40 minutes to make sure I’m really asleep, then carefully, carefully, carefully put me down, leaning your whole upper body into the crib so we are touching until the very end. Plan to be back soon! If I make a noise, or shift slightly, go ahead and get up, because I will be. I was still waking every 2 hours at 7 months, and didn’t sleep through the night until I was 18 months old.

Dale Jr: obviously read those “sleep books.” I love this. I love my crib. Is my thumb there? Then we’re good. I started sleeping 10-12 hours straight per night at 2 months old. I am the poster child for “put me down drowsy but awake” which Mama figured out only because she really had to go to the bathroom, so put me down in my crib for just long enough to do that… and I was out when she came back. I enjoy napping, and have been able to self-soothe from the beginning pretty much. Mama and Daddy spent several nights waking up to make sure I was still alive because they couldn’t believe a baby could sleep that long.

Eating:

J-man: I will nurse and nurse and nurse and nurse and nurse. And hate the bottle. And nurse and nurse and nurse and nurse and never let go even while sleeping. PS: and nurse.

Dale Jr: I nurse when I’m hungry, and then I’m done. I don’t especially like to go to sleep nursing. I have taken a bottle a few times, and seem to be OK with it. I DO nurse about every hour during the day (when I’m not sleeping) but since I don’t nurse at all during the night, Mama is perfectly happy with that.

Size:

J-man: I am HUGE and outgrew some clothes before I ever got to wear them.

Dale Jr: I am HUGER and outgrew a LOT of clothes before I ever got to wear them. Also, I’m out of sync with brother’s clothes sizes, so the hand-me-downs aren’t helping at all. Also, I’m growing out of the 9 month summer clothes that Mama bought when I was 2 months old because I outgrew the 6 month clothes she bought when I was 1 month old.

How Mama’s work is going:

J-man: I occasionally made Daddy drive me to Mama’s office because I would go on bottle strikes and refuse to eat. I ate enough during the day to not starve to death, and then nursed until I could not nurse more at night which made Mama tired. People in Mama’s office got very angry when she went to pump every 3 hours. Mama is surprised she didn’t wreck driving to work everyday in a daze state from lack of sleep.

Dale Jr: Mama’s work people have heard me on conference calls because sometimes I need to eat, and are perfectly fine with that. They also realize Mama gets way more work done now that she’s home.

How Daddy’s work is going:

J-man: Daddy doesn’t get to work during the day. Ever.

Dale Jr: Daddy can work while I nap. Sometimes.

Maybe now is the best of times. It’s not the worst of times. It is a good time.

{ 2 comments }

Good Babies

June 24, 2009

People at work have started asking me (since I went back last week) if E is a “good” baby. Me: “Actually, he’s already working on getting his second tattoo, and we’re not sure if his teeth are going to come in at all thanks to all that meth he’s cooking up and using.” I hate [...]

Read the full article →

Social Smiles

June 10, 2009

I remember the J-man’s babyhood as a blur of sleep deprivation and just making it through the day. Of course, we were so incredibly clueless about anything to do with babies then. The J-man was about 7 months old when he stopped nursing every 2 hours, round the clock. (At 7 months, he started ONLY [...]

Read the full article →

← Previous Entries