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So yesterday, I posted about LP’s fourth birthday, how smoothly it went, how I hardly even paused a moment to help him hiccup over the transition, or myself really. I didn’t spend hours remembering his birth – just a moment or two – and I wondered why exactly that was when with my other two boys I simply stare in amazement at them all day long on their birthday and clock my contractions and labor progress mentally throughout the day – no matter what else is happening, I could be thinking “I was 6cm,” or “this is about when we broke my water.”

In any case, I wondered about it in only the most cursory of ways because I really already know why it is this way. While my oldest is the child who made me mom, and my youngest is a treasure of a baby, LP simply takes up more room than they do on a daily basis. I’m not sure how I feel about this reality, but it is absolutely an objective reality. LP’s health complications and disability have changed my life more than almost any other thing I can think of. The way I do life has been profoundly impacted – and my future has changed the most because of him – the way I mothered Thinker for 5 whole years, the way I ran our life, our schedule, the things we did with our time – it all seems a faint memory. With LP, it is hard to stand back and look with any sort of perspective. I have a hard time remembering back when he did x, y, or z, or was this or that particular way, his ages and stages become a blur – as if my own brain chemistry has been altered by this child.

This is very like when a young child wants to show you or give you a toy and that hold it right up to your eyeballs; you can neither see nor take the offered object. LP is always so close, that pulling back and remembering would probably take some superhuman effort that eludes me on a daily basis. I do remember when I left to go to the hospital to have Little Bear. When I next saw LP he seemed both smaller and bigger to me than I remembered. He was all of 22 months and was so completely a baby in many ways, and in many others he was all toddler, all go, all the time. Those two nights in the hospital are as long as I have left him. I left him for one overnight when he was 14 months old – a random and short-lived easy patch in his health history – and I have attended some births which have kept me away for as much as a day or close to two.
My mother arrives tomorrow, the rock-star Nacky from western New York will roll into town with her cool car and who knows what tricks up her sleeve. Then to celebrate our 12th anniversary, Matt and I will leave for two nights away in Rockport, where we will indulge in lobster & beer at Woodman’s (or for him fried fish, poor soul doesn’t really like lobster), where we will walk to the march unencumbered by small children, sand toys, cereal bars or goldfish crackers, where we will take our time in art galleries and pokey little shops with many things not meant for touching or mouthing by young children. If this does not give perspective, I will in fact need to plan a trip to Asia, but I am hoping that a few hundred miles between the two of us will ease the tension on this mommy’s apron strings.

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all of ’em. I’ve been frazzled, busy, having fun and doing end of school year chores and making plots and plans for summer, trying to buy a new vehicle and following election results (!!!). Me and what seems like 150 of my closest people are all in varying states of transition, which is mildly stressful (actually not mildly, how do people cross out stuff on their blogs. I don’t have that key.)

However one very major transition is all of a sudden behind us. That is to say, my three year old turned four yesterday. In celebration of the great day, he decided to handle this transitional moment with really quite a lot of good humor, grace and poise. I cannot remember him handling any other transition (including going from house to car to stop and shop) so easily since he moved from his crib to his race car bed last summer. Apparently, one good transition a year is what I should expect & so I will. I thoroughly expect him to cry and fuss later today when I attempt to get him up from nap and bring him down for a snack – but turning four? no big deal. It’s like we didn’t even feel it.

In some sense, we don’t feel it. He is “delayed” enough that he doesn’t always seem four. In other ways he is showing his age: he has many plans, enjoys more complicated play, likes to be in charge and is engaging in lots of problem solving. I’m trying to foster lots of independence by sitting on my hands as he struggles with making toys and games work the way they should. This has been dubbed by me the mommy of this house, the summer of “go play!” We will play together, separately, in pairs and even perhaps upside down, but play is the theme -as is going, especially while mom is cooking dinner or trying to get stuff done.

His new skills have been hard won for both of us. Things that once seemed impossible are becoming routine or are within easy reach to him these days. I have promised myself not to live his life for him. He would prefer that, if I sat right there interpreting and coaching him through every moment. His need for me has aged me more than the four years he has been here, but at this moment – as we sit on the very edge of the long pool of summer – I feel hope for him that he will jump in, splash around and enjoy.

And to all of you, have some cake!

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all of ’em. I’ve been frazzled, busy, having fun and doing end of school year chores and making plots and plans for summer, trying to buy a new vehicle and following election results (!!!). Me and what seems like 150 of my closest people are all in varying states of transition, which is mildly stressful (actually not mildly, how do people cross out stuff on their blogs. I don’t have that key.)

However one very major transition is all of a sudden behind us. That is to say, my three year old turned four yesterday. In celebration of the great day, he decided to handle this transitional moment with really quite a lot of good humor, grace and poise. I cannot remember him handling any other transition (including going from house to car to stop and shop) so easily since he moved from his crib to his race car bed last summer. Apparently, one good transition a year is what I should expect & so I will. I thoroughly expect him to cry and fuss later today when I attempt to get him up from nap and bring him down for a snack – but turning four? no big deal. It’s like we didn’t even feel it.

In some sense, we don’t feel it. He is “delayed” enough that he doesn’t always seem four. In other ways he is showing his age: he has many plans, enjoys more complicated play, likes to be in charge and is engaging in lots of problem solving. I’m trying to foster lots of independence by sitting on my hands as he struggles with making toys and games work the way they should. This has been dubbed by me the mommy of this house, the summer of “go play!” We will play together, separately, in pairs and even perhaps upside down, but play is the theme -as is going, especially while mom is cooking dinner or trying to get stuff done.

His new skills have been hard won for both of us. Things that once seemed impossible are becoming routine or are within easy reach to him these days. I have promised myself not to live his life for him. He would prefer that, if I sat right there interpreting and coaching him through every moment. His need for me has aged me more than the four years he has been here, but at this moment – as we sit on the very edge of the long pool of summer – I feel hope for him that he will jump in, splash around and enjoy.

And to all of you, have some cake!

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Yesterday was our big OT evaluation at the children’s hospital. LP was feeling non-compliant. A little bit oppositional perhaps. It was, in fact, his nap time, but I wanted the opening. I took it.

Apparently, I had made some sort of unconscious choice. I noticed myself helping him less – significantly less – than I usually do in less than familiar contexts. The therapist gave me some paper work – the long sensory profile, I only had the short one from the school system – I cheerfully ignored her attempts to get LP to comply with a variety of sensory activities. Actually, I was not cheerful. I acted cheerful, preoccupied with the paper and perhaps like a less competent parent than I truly am.

I think it worked. She was not able to complete all her evaluations, but she did complete most of them. LP was finicky, hard to transition from one activity to the next. He was somewhat defiant, wanting to control each game so he would feel safer. He wanted to play catch with the therapy ball, not roll it. He wanted to stand on the platform swing, not lie on his tummy. He did not want to color. He did not want to cut. He wanted to run (in progressively smaller circles until he crashed onto the mats).

She felt pretty comfortable diagnosing sensory issues. She gave me a little speech about behavior, which I smiled politely at, because, well, I had faked it a bit. I could have made him more compliant. I could have, but I chose not too. I can translate the world for LP. I can be his sensory integration system. Except I don’t go to school with him. I won’t be on the bus to Kindergarten in 18 months. 18 months is not a very long time. So, I didn’t play that role at the evaluation. The therapist expressed surprise that he is able to participate in a class setting without an aide. I indicated I believed it was due to being in a very small class, for only 5 hours a week and having an extremely experienced teacher.

Also, accommodations are being made. They expect less of LP. I’m have mixed feelings about that. In one sense, it is very realistic. It is important not to discipline him for behaviors he is not in control of – in another sense, it is discouraging. I am afraid that he is a regressive pattern, seeing how little he can/how much he can get away with, because he senses that none of his caregivers are 100% sure of what to expect.

We’ll hear back from the therapist in a week or so. She’ll give us our “results” which, I hope very much, mean a label and insurance coverage for the therapy. Then I can take my results to school and the district and we’ll go round the gerbil wheel once again. Not that we aren’t making progress. We are. We just spend alot of time recovering old ground. Yesterday’s evaluation was new territory. She asked me questions I’d not been asked before. She asked LP to do things he’d not been asked to before. I came home tired, weepy and just worn down from the effort of it all.

The month of March brings some small reprieves: no vacation days til Easter weekend, no Sunday night class for me, a visit to my mom for the Easter holiday, more light, a few more warm days and my mother-in-law offered to babysit so that Matt and I can go to the movies – nothing like escaping the house for a few hours to reset the brain, perhaps we’ll get some yummy food out as well!

By the way, Ralph Nader is 74. I think it is time we appreciate his nearly 3/4 of century of whatevering….

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Recorded after Valentine’s Day at preschool, celebrated by a mother-child tea.

My day was hard. Seeing LP at school sort of blew my world apart. I find I don’t spend lots of time with other kids his age. We both find it exhausting. Apparently, he does very well at school. However, today was quite difficult for me. It’s hard to see how very much he stands out in a crowd – which is one of the many reasons I avoid them. It is easy to become accustomed to his ways. I’ve had nearly 4 years to become accustomed. I don’t know what normal is anymore. It is hard to separate out the differences that are there because he is one of us (those 10-15% of people who are just different) and which differences are signs of him needing intervention.

There were about 40 3 year olds, plus their teachers and mommies and cameras. The children were to stand in a circle and sing to the mommies. 99% of the children did this. A few were distracted (“hi mommy! hi!”) or just kind of spaced out. LP was spaced out for a short while. Then he laid down in the fetal position. Then he stood up, when he saw me, and tried to defend himself against all the stimulation by making a loud noise, like a roar, and saying “I’m a truck mommy, I’m a truck.” I felt so bad for him that he is just having to cope with all this. He wasn’t even particularly miserable, it was just sad. I cried the whole time. When the singing was over, he was very happy to see me. We had cookies and juice and tea. He was very well mannered, sharing with everyone in sight. I was so proud of his recovery from the over-stimulation. Then it was time to go to the classrooms to play. While I was still in round 18 of negotiation, I looked up. The whole area had cleared. All the other kids transitioned no problem. This was about 45 seconds that had passed. We had to have two time outs and two threatened trips to the car to go home. We finally made it to his classroom.

He saw all the mothers inside with kids and asked to go home and watch a show (his safety net). I coaxed him in. He made a fabulous tower of blocks twice. He asked his friends to admire it – most of the girls were making a craft. Then he cleaned it up, independently. He then played with an alphabet puzzle. His skills in this area far exceeding his peers. The other mothers looked at me with wide eyes – they are all very nice, but no one expects the least emotionally mature kid in the class to know the ABCs better than the rest. He was frustrated because one child kept trying to put M in out of order. The puzzle was a zoo train. Each animal was on a train car. It was a perfect storm of love and interest for LP. The other kids were trying to have fun with him – and he wanted them to – but he struggled to keep his temper, because M comes after L and what’s a boy gonna do?
At one point he decided to crash the whole thing, but rallied and we finished it – even taking turns with Noah (who very smartly was checking the box of the puzzle to see which animal should come next, this way they’d both always be right.)

The other children dispersed. He cleaned up completely on his own without incident or whining (not to self for at home!). We played with a few other things. When it was time to go, he (and Little Bear who had spent this time in the backpack) completely melted down. I lost my temper several times before we got to the car and cried the whole way home. I cried silently with Dan Zane going on the ipod. My disguise did not work. Connected as we are, he knew of my fears, disappointments and frustrations. He badly wanted to please me. He stood on the doormat with his coat and shoes on and sang two of the songs from the repertoire of the day. The first was Jesus Loves Me. The second I will record here:

I wish I had a big pink box to put my mommy in.
I’d put her in and tap, tap, tap and take her out again.
(repeat faster, with adorable hand motions.)

I managed not to weep uncontrollably but to clap and be proud, as he was of himself. He accomplished the task – not in the original setting, but on his own terms.It was the highs and lows of LP today. After lunch he helped me make the cake. He’s never done such a good job before. We read the recipe like a map which helped him be extra patient with the steps. At dinner he ate 4 meatballs with red pepper sauce!!! And had a piece of cake.

Upon reflection several days later:

Thursday was not pleasant. It was quite painful. However, Thursdays performance at school isn’t a very accurate measure of his success there. It was not a normal day, in any sense. I look back on that moment when he stood up from his fetal position. Where on earth did he find the strength to do that? Where did he summon the courage to defend himself with karate gestures and truck noises against the onslaught of stimulation? “I’m a truck, mommy!” He was quite proud of himself. I wish I had clapped for him then. It was raw courage, to be sure.

Tomorrow brings the task of calling the pediatrician’s office. We need a referral to the occupational therapy center at the children’s hospital. This is the upshot of Thursday. Friday’s task was we found out the OT center took our insurance and that they do not have a long waiting list. If they can see him in the next week or so, we may be able to have an evaluation in hand at our next PPT. He was deemed ineligible for OT services in the school district because his school performance doesn’t indicate that he is impaired enough be his sensory defensiveness to need them. I see that. I get it. However, home, transitions, play groups, errands, libraries and museums are awaiting attention. LP and I need just as much help there as at school, perhaps even more because school is usually predictable. Thursday was a true anomaly, but much of the rest of our life is stimulating, unpredictable and stressful – at least that is how it appears in LP’s brain. I’d love to help him get to a place where he finds is stimulating, enriching and pleasurable, at least most of the time. Wish us Godspeed.

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So, it’s time to share. The life of Little Puppy thus far has been a puzzle, an uphill puzzle. One piece that has just placed itself is his Sensory Profile.

The Good: What we learned by filling out a short questionnaire is that he experiences noise, motion and sound as stress. The questionnaire asked me to rate his response to a variety of stimuli. It then scored his response as “typical,” “probable difference,” and “definite difference.” Then, the occupational therapist assigned a number value to each of those headings and told us where L.P. is having issues – you know, in case we hadn’t noticed that he screamed when firetrucks passed by. In any case, it was actually more helpful than it sounds because it has a name, which means it is real and not in my head. It also means lots of our problems are not actually discipline problems they just look like it – which feels better to me, even if it doesn’t look better to strangers who see us at the store. I still have my pride – maybe.

The Bad: What we learned is that there is no magic cure for this problem. There are lots of things to try and we are trying them, but there is no one perfect solution for every kid, nor is this something that will be outgrown by a certain age. He will outgrow his panicked emotional responses to these stimuli, so our situation will improve, but he may very well continue to experience these stimuli as stress. There is a lot that is unknown.

Ironically, one of the areas of testing that LP did not score “Definite Difference” for was Tactile Sensitivity. The questions I answered indicated that LP would eat a variety of food textures and did not mind playing in the sand. His score sat him on the edge of “typical” and “probable difference.” The short questionnaire did not ask how he felt about sand in his shoes, tags in his underwear or seams on his socks. This seems odd to me, as I spend an inordinate amount of time removing sand from shoes, tags from underwear and shopping for the perfect sock.

To understand my need to find the perfect sock, you must enter into the world of LP where things he wishes to not touch are called “buzzies.” This is a word he has been using since age two and it describes any number of yucks in his world: hair in tub or on tongue, too fuzzy sweaters that mom wears, dust-bunnies that appear under baseboard heaters or the fraying edge of carpet – the small speck of dust discovered on a passy just popped into his mouth and the untrimmed strings from hems on the toes of his socks – all are “buzzies.” This word has been uttered in panic, fear, with tears, with joy of discovery (look buzzies! -when pointing out the need to dust under furniture), and, even now, somewhat matter-of-factly as he runs to rinse of his pacifier. It is a helpful word – as it clues me into what the matter might be – though not always helpful enough – too many options, you see. Here begins the sock shopping:

The Ugly: It looks like an innocent cozy sock on the outside:
But on the inside, it is BUZZIE SOCK – – perfectly formulated for the torture of sensory sensitive preschoolers everywhere – guaranteed to make them weep, moan and go barefoot at all times of year.

So, um yeah, I think he may be a bit Tactile Sensitive after all.

*************
Look for more sensory issues each Saturday. In between, I’ll try to be funny, soulful or just posts pictures of baked goods or my kids.

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Apparently, a baby can have GERD that is silent. Not silent as in quiet or absence of noise, but silent as in no vomit or spit up. I think at this point LP had spit up maybe 5 times in 4 months. So, spitty he was not. However, if a baby throws up inside his own throat and then swallows what he regurgitated, you hear the sound.
The sound of
episodic,
high pitched
(high pitch = baby in pain)
crying.
And it doesn’t go away by 4 months. It doesn’t go away at all, unless you treat it. He will just cry more and more, because of the pain and because of the hunger. Only, he won’t know it’s hunger because in his very small, still developing brain:
eating=pain.

I imagine now he might have spat up a bit more, you know, if he’d been eating at all. Truthfully, I don’t think he had been eating well all along – remember poor latch, upcoming growth spurt, building milks supply, that had been around 10 weeks – and probably he had not eaten anything close to well for 2 months and most likely he had been surviving on sips of milk from my breast and water from my cup in the preceding two weeks. He was growing taller, being stretched out. There was not an ounce of baby fat on that child. He had a pointy chin, pointy elbows. It was easily masked in the fall weather with fleeces and hats. Even I did not see him naked all that much in our old drafty apartment.

I called my pediatric office on that day to say he had skipped three feedings in a row. That was a gross underestimation. 2lbs can’t be lost in three feedings. His diapers had been light for weeks. I had just been too sleep deprived to really absorb what that meant. It’s all so foggy now. The doctor asked the nurse practitioner to try a bottle. They eyed me suspiciously. Like many well meaning souls they respected my right to breastfeed and supported it as the healthiest choice. But, like all breastfeeding mothers I was suspect – was I going to insist on it event to the potential detriment of my baby? – No, I wasn’t. At all. Even so, he refused the bottle. The back arching, screaming, shrieking baby appeared. When not having an episode, LP was the sweetest, mildest tempered baby on the planet earth. I was completely in love with him and he with me. When presented with food, he was absolutely unrecognizable. The whole office came to the door. It was horrid. I was crying. Administrators were crying, the nurse was crying. In any case, the pediatrician called the hospital, the gastroenterologist at the pediatric hospital. It sounded like silent reflux. It had to be. If the Pepcid helped, it was GERD. If it didn’t help, it wouldn’t hurt him. No, they didn’t need to see him. Just weigh him, get the right dose and call it in.
Getting the dose right seemed like higher math. Still, I was assured it would be called in. Also, formula. Please put the baby on hypoallergenic formula. Just to be sure it wasn’t a milk protein allergy. Here is some to take home. We can revisit after we’ve seen him eat for a few days. After he sees the specialist.
Suddenly all the rules had changed. Now willingness to put baby on meds without a real diagnosis and willingness to wean suddenly = good mother. Okay

Let me be very honest here. I want to say this kindly, but I was broken-hearted. For me and for him. I wanted to nurse. I wanted nursing to be okay again. I hoped it might be one day. And I mixed up bottles of formula. For the first time ever. I had to read up on it, seriously. I was using tap water at first, unfiltered and unboiled. I also want to say that I am deeply aware that I had a hungry, sick baby, as well access to medicine and food to make him well. So, yes, I screwed my head on straight and did the next right thing. And I did need some talking down by my nearest and dearest. But, I was basically at peace.
Speaking of peace, after we managed to acquire our very own bottle of baby Pepcid and the teeniest dropper ever – And after we gave it to him and waited the requisite 30 minutes before feeding, oh the peace. He drank, burped, drank burped. For the next several weeks, our biggest problem became helping him through the 30 minute wait time, because he finally could eat. He could eat exactly three times a day happily. That’s how many times a day he had baby Pepcid. And 30 minutes was meaninglessly long to him. A totally different type of crying began and it was lovely to hear.

Yes, you are right, 4 1/2 month old babies do in general need to eat more than three times a day. Ours could not. Nor could he poop. Our very special hypoallergenic formula was causing bit of a back-up and baby oatmeal and pears were not powerful enough to help, nor pureed prunes.

Take a look though:

Our brand new pediatric gastroenterolgist was great – only she wasn’t actually a doctor. She was the nurse practitioner in pediatric gastroenterology at the Connecticut Children’s Medical Center. The doctor had an opening in January if we wanted to wait. It was October. We’d like to see the nurse practitioner, please. And she really was great. Baby Pepcid was working. He was poked, prodded, meausured and weighed with super accurate equipment, again and again.

He was gaining. His blood work was great. He still couldn’t poop. Before I knew it, I had to swallow my pride and pour pear juice into bottles for him to drink. He drank the specialized formula three times a day, 30 minutes after baby Pepcid. He ate as much baby food as he wanted (doctors orders!) and in between he was to drink juice. Out of a bottle. Yep. So, when I was out and about – you know not waiting around at home for 30 minutes to pass, or sitting up in his bouncy for and endless parade of puree, he’d drink a bottle of juice. in his stroller – to tied him over to baby Pepcid/meal time. And to help him poop.

And let me tell you what you must already know to be true. All the places I went, I could just tell that people thought I was the most wonderful, responsible mother ever. No, not really. They told me about tooth decay, baby bottle mouth, empty calories, failure to thrive and sugar addiction. It was really dreadful. Truly. There was nothing gracious for me to say. Should I tell them I’d only just gotten out of a horrible scrape with this kid and had saved his life by letting all my good parenting paradigms call to pieces? Should I just run away crying? Should I tell them to mind their own damn sugar addiction? I have no recollection of how I handled this. Only hating it and surviving it. And also not giving a damn what they thought. Because my baby was starting to gain weight. So now suddenly, unrestricted solids at 5 months and bottles of juice = good mother. Weird how that works out, huh?

More tomorrow on how I kicked motherhood’s ass with my super powers of juice filled bottles, arrowroot cookies and playing with antacids. Also, how early weaning kicked me around the room a bit, but I was the last woman standing.

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