The Hardest Thing about Special Needs

Let me say up-front: I know we are lucky. 12 months ago (7 months ago, even), the hardest thing was keeping Mr. A alive. Now, the hardest thing is knowing if it’s enough.

It. Anything. Everything. Too much or not enough?

When we got A’s microarray results, all I wanted to know was: will he be happy? And no one could tell me, and believe me, we had reason to doubt. I am lucky, because I used to work with autistic children and learned to love fiercely those who will never. (Never what? Does it matter?) So when being told that my firstborn would never walk, talk, or potty train, it wasn’t the hardest thing to say: so fucking what.

For me, if I could not talk, I would be deeply unhappy. If I relied upon others for all matters of self-care, I would be humiliated. For Mr. A…well, right now he doesn’t care that I change his diapers. Will he ever? Abandoning the dreams I had for him (and his brother, who still carries those dreams in his blue eyes) before his birth wasn’t that hard. I wanted those things—playing basketball, riding a bike, making friends, having lovers, going to college, finding a fulfilling career, finding a life partner, all that—because that’s what I thought would make him happy. If he never needs any of that, so be it.

But this is where it’s hard, because who decides. I don’t want to hold him back. I don’t want to make him miserable demanding that he do things he will never do. To take the long view with Mr. D. (as far as I can tell, anyway), isn’t that difficult. I will make him miserable for a while, teaching him he doesn’t always get his way, has to learn to pick up after himself, must learn to read, write, mow the lawn, etc. I have a fairly good idea of the skill-set he will need to become a happy person at 18(ish). And as he grows, more and more decisions about things like this will be taken from my hands and placed into his own.

I simply do not know with Mr. A.

I do not doubt that he will walk. He does have some unusual anatomy, but I know he will do it. I just do not know when. Recently, I have begun to force him to sit more, in hopes of strengthening his core so that he can walk. And now I spend hours a day making him bare weight on his feet—sitting, in the exersaucer, leaning against the couch, against my legs or tummy, playing with his learning table. He doesn’t always like it. Sometimes he hates it.

What does it matter, if he walks at 2 or 4 or 6? At the heart, right now, I want him to be safe from Mr. D. D loves him. Loves him. But he is not gentle. We are trying. I am trying. I show how to gentle touch, on me, on his father, on the cats. He has learned to tap A rather strongly on the head (“patting” him), or to throw his whole weight on him in the sort of hug I cherish, but A does not. Mr. D is smart, for a one-year-old. But he is a one-year-old. He usually does not step or crawl on A accidentally. He just showers him with forceful love. He no longer goes for the eyes or tries to insert his entire fist into A’s mouth. We are making progress. But when A is sitting, he is safer. And if he were standing, if he could toddle away…that is my hope.

I do not know which will come first: for D to truly realize how he can hurt his brother and decide not to, even when I am not right-right there, or for A to learn to walk. I am pursuing both paths.

But how much to ask of A?

When Mr. A was almost 6 months, having spent more than half of that time hospitalized, I threw the Haberman bottle across the room. Enough was enough. He hated the Haberman, the Pidgeon, the long skinny one whose name I can never remember, the squeeze bottles, all of them. Hated hated hated. He was on nectar-thick milk. He hadn’t taken more than 5 mls since before he got his G-tube. Drinking from a bottle, I decided, was not a life-time skill. He can’t form suction, not with his cleft palate. He could get liquid into his mouth using all those special bottles and nipples, but it frightened him.

With good reason: he had nearly died, more than once, from liquids in his mouth and throat.

I decided to move straight to solids. He gets his nutrition from his G-tube, and we would work on swallowing using purees.

I think that was the right decision, but of course I am not sure. I do have doubts. Would he be eating more now if I never gave up the bottle? If I forced him through his panic, his breath-holding, his wild-eyed aspirating…would he eat now? Or would he have total oral aversion and hate me for doing that to him?

Should I put him in intensive physical therapy, so that I am not the one who holds him back by saying, “You are good enough as is”? Should I make him cry for four hours a day for 3 weeks, because it will be worth it in the end? Will it be worth it in the end?

How aggressive should I be, with speech and feeding once his palate is repaired? Should I teach him to fear unsafe situations or assume that I will always be by his side? How much is enough, for a child who is perfect right now?

How much is enough?

How can I know?

This is the hardest thing.



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In the beginning…

I read the notebook I kept on the boys, for the first time since writing the words on the pages.

It begins with each of their first and middle names, spelled in big letters. I wrote those before they took me back to the OR, so that everything would be spelled properly. Just in case.

Then: A—3 lb 12 oz, 17.25 inches, APGARS 6,7. Looked blue but then cried. Peed on nurse. “Worked” on him.
D—6 lb 12 oz, 19.5 inches, APGARS 7,8. Cried. Got footprints. I got to touch him.
Both to NICU.

Well, I suppose even then, it was there: Mr. A, strong and stubborn, but needing help. Mr. D, not quite normal (I got to touch him, not hold him), but enough that no one was worried. They felt calm enough to take his footprints.

The footprint issue bothered me for days. When I had to leave them upon discharge, I was hysterical for many reasons. One of them was that we never got A’s footprints. It felt like the ultrasound appointment when they told me he probably would not live, and then handed me pictures of only Baby B, his brother. (2nd opinion, and 3rd opinion ultrasounds all said the doctor was wrong. And indeed there was a computer error. But this was the first time anyone raised the issue of something being not quite right with Baby A…and then it vanished until his birth. Looked blue, but then cried.)

While I was recovering from my C-section, a neonatologist came in to talk to us. This was the first time I heard (although my husband already knew, but had *forgotten* to tell me), that A had a cleft palate. A “U-shaped cleft in back of palate” is what I have written. In subsequent weeks, there was much debate about whether it was a U-shaped or V-shaped palate (I still do not know, it looks pretty dang V-ish to me though), whether he had Pierre-Robin Sequence or not (his notes say “PRS-like”, so who knows), and whether the hard palate was at all involved (it’s not). The doctor also told me, which I knew, that he’d had apnea—he was working harder to breathe than he could sustain. Thus they gave him surfactant and intubated him. A chest X-ray revealed a pneumothorax, but it was gone on subsequent X-rays, so they think it might have just been a shadow. He was missing his gag reflex, which they hoped was from the sedation they’d given him for intubation. (It was not.) He got an ART line, an umbilical IV, and TPN. And I was told he had a square head and low ears.

Mr. D’s report was shorter. He had low blood glucose, so they gave him a scalp IV (could not get one in his umbilicus, or arms or feet) and some TPN. The end.

The notes go on. The first time D breastfed, the first time A gagged, the first time I held A (2/4/12 at 11 am, a few hours before I was discharged), amounts of milk pumped and given to each boy, moving rooms, under and not under lights and heaters, tubes and lines pulled or inserted…

Then they stop. I remember thinking it wasn’t good to be obsessing so much over the little details. It also hurt to know that D would be home soon, but then A would be all alone. And sometime, possibly the very day I stopped taking notes (2/8), we got A’s diagnosis. Welcomed to Holland (insert eye-roll here) by very poor bedside manner: the doctor told us of his deletion, but when I asked what it meant, proceeded to go on and on about how, even with typical kids, you just never know. Why, his own son had a learning disability, and who would have ever thought! He finally handed us a computer print-out, out of order, from Unique. It was folded in half and passed to us as if on the sly. He told us not to obsess about it, and then walked off.

Well. There you have it, I suppose.

Except not at all. A’s story, and D’s story, is so much more than that little notebook.

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Weighty Matters

The boys had their one-year well-check today. It went about how I expected.

Mr. D is a tall 31.5 inches (91%le—non-adjusted!) and a good-sized 23 lb 6 oz (56%). With his daddy’s head (47 cm, 67%) to round things out. Our pediatrician’s group recently moved buildings, and Mr. D was happy to help them discover which of their locked cabinets were actually not locked. I didn’t exactly turn him loose, but what with having twins and “Oh, sorry, our computers did something weird”, we were in Exam Room #3 for over 2 hours. (The bitterest part was waiting almost 40 minutes to get six—yes, six—pokes per boy. During what should have been nap time.) Anyway, everything about Mr. D. is just perfect, except for the fact that he sleeps in our bed, either attached to my boob or a bottle. He’s too big to eat all night long and is doing it for comfort, according to our pediatrician, and I do agree. She didn’t say we have to kick him out of the bed, but I know my husband is wanting to, and I’m beginning to think that, once he is night weaned, he will sleep better in the nursery.

My first-born, Mr. A. Well, I knew he’d lost weight. His height was a bit of a bummer, probably because he was mis-measured while inpatient last time (they got him at 28 inches, which did seem a bit much). He is 28.25 inches long, and in the 7%le. On the charts, like a big boy! This is the first time he has been more than his standard 2.25 inches shorter than his brother, a trend he had continued since birth. But oh well, maybe he’ll get back. He continues to be in the 0%le in weight, at 15 lb 4 oz. His head is also in the 0%le, at 43 cm. Because he is continuing to grow in both areas, and because he mimics the curve (except recently), just being a bit beneath it, the good news is, we have once again avoided the dreaded microcephaly and FTT labels.

Our pediatrician is on board with both my big plans for Mr. A’s tummy: we will keep him on his fortified breast-milk until his surgery (which is, after all, only 3 weeks past what should have been his due-date), and then we will transition him to the blended diet. Which is exactly what it sounds like: food put through the blender and then run through his tube. I plan on having his 24 oz of milk still be breast-milk, where Mr. D will be getting whole milk once he’s hit his due-date (unless I have extra, in which case we’ll see). She gave us a referral to a dietician, since she feels like striking the right balance between nutrients, calories, fluids, and sheer volume (A’s stomach is still small, and his reflux is still bad) is beyond her expertise. She also, and thank god, gave us a referral to an SLP. It’s time to be more aggressive in this area, particularly once his palate is repaired, particularly-particularly if insurance will pay for it.

We intend to milk Blue Cross for all they’re worth. They, in turn, continue to be total jerks, denying this, wanting more information about that, suggesting alternative this, blah blah blah. That’s a whole other post, though.

We will also be feeding Mr. A more, in hopes of gaining back that lost pound, and maybe even building up some reserves to get him through surgery.

On Wednesday, he had his annual evaluation (not the meeting, just the testing) with EI. That bummed me out. That’s another post again, but suffice to say for now that I hate how they don’t have a box for everything he DOES, and that it’s a 3-strike rule, and all those strikes can be related. Alas and whatever.

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Weight baring

Oh my god!!!! Very first time ever: Mr A stood up holding on to just my fingers! For almost a minute! And then did it again! So proud!!!!


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Shrinky Dink

I shouldn’t be surprised. I weighed him out of turn for a reason. His spine, pelvis, scapulae becoming more prominent.

The stomach bug (presumed Norovirus) Mr A, Mr D, and I had of course hit him hardest–the one with the least to lose lost the most.

I weigh him every two weeks to adjust his milk amounts as needed. On the 25th, he was weighed at the hospital when scheduling his palate repair (which, by the way, Blue Cross is demanding “additional information” before approving, because a palatoplasty is something all the toddlers are trying to get these days). Clothed in overalls, he was 7.41 kilos (16 lb, 5.4 oz). Subtract the overalls but add a few weeks, and I figured he would weigh 16 pounds at his 1-year checkup this Friday.

Tonight, fully clothed in fleece pants, he weighed 6.97 kilos (15 lb 6 oz).

I am heartbroken. I think my son has failed to thrive.

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Playing Favorites

Not to brag or anything, but my kids are totally everyone’s favorites.

On Friday, I cancelled their swim class (which is really water therapy–teacher is a SpED teacher and former PT/OT and has been working with special needs kids in the pool for over a decade). All three of us were on the tail-end of a nasty stomach bug, and I just didn’t trust their swim diapers to contain anything at all. Their teacher literally said, “Oh no–they’re my favorites!”

(This is funny because, up until last week, I wasn’t sure she liked us at all, much less more than anyone else.)

And then Mr. A’s PT/OT not only came to their birthday party, but she also stayed for quite some time. And brought them the neatest sensory bin and a bunch of oral-motor “toys”.

It makes me happy that my boys are so loved, even by those we (or the state) pay to work with them.

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The Portable Baby

At some point, I do plan on making this blog more of an update-y type thing, but for now, it’s just random thoughts. So.

I used to say, jokingly, that Mr. A wasn’t “very portable”. And he wasn’t. Carrying him from the bedroom to the living room each morning, and from the living room back to the bedroom each night, was often the extent of it. As in, I couldn’t carry him into the kitchen to heat up a bottle, or into the nursery to change his diaper. Given that Mr. D soon weighed twice what his brother did, and I could just toss him in the Moby and call it good, this might require some explaining.

Mr. A came home from the NICU weighing just over 6 pounds (at 2 months old). He also came with accessories. From the head down: a nasal canula, which hooked up to either about 8 feet of tubing, or about 200. (I don’t know the actual lengths. Bad home-heath caller that I am.) The 200 was so we could have him hooked up to a very large tank (M-tank, I do believe) of oxygen and walk him around the house. Or so the cats could play with it when we were trying to sleep, as it stretched from the living room to the bedroom. The 8-foot went to a small, “portable” tank, that came in a nifty carrying container with a strap. He wore this 24-hours a day.

He then had a large suction machine, which also came in a nifty carrying container with a strap. In the pockets of the case were assorted suction tubes. We had to have this with us at all times, as he had (has) bad reflux and failed his swallow study with flying colors…as if repeatedly aspirating (resulting in severe bradycardia and desats, and 2 extensions on his NICU stay) said reflux did not clue us in. His suction machine was more important to me than his oxygen (he was only on 1/16th, and then 1/32nd of a liter), and I used it repeatedly to save his life.

He also came with special bottles and nipples and fortifiers and thickeners, all in an attempt to get him to take anything by mouth. And a bunch of pink swabs to clean his mouth, since he wasn’t eating. But as this isn’t all that different from what a typical baby needs (and can easily fit in a diaper bag), it doesn’t really count, except that you can’t buy anything good at Babies R Us.

Along those lines, he also had a thermometer to use under his arm every 3 hours, as he had difficulty regulating body temperature. And a tape measure to measure his abdomen, to make sure food was passing through and his intestines hadn’t gone and re-rearranged themselves, following his intestine-rearrangement surgery (Ladd procedure). And a hoard of gauzes, tapes, swabs, creams, ointments, and sterile water containers, for dealing with his stoma, which needed to be done at least twice a day.

The stoma is the hole going from his skin on his tiny abdomen all the way into his stomach. It typically contains his G-tube button (except when he, his brother, his mother, or, you know, anyone or anything, has yanked it out). At this point in his life, Mr. A needed to eat every 3 hours during the day, for 90 minutes at a time. And continuously at night. That meant, for 18 of 24 hours, he was also hooked up to additional tubing (6 feet? 8 feet? Whatever), which fed into a pump and had a feedbag attached to it. We usually hung this from an IV pole, although it too came with a nifty container with a strap. And he needed frequent burping, which required a 60cc syringe. And of course all the little syringes for his medicines.

It also came with his “emergency G-tube kit”—a bunch of (special) syringes, dressings, lubes, catheters, etc., in case his button was yanked. We’ve been lucky and can just pop it back in each time, but it can require trips to the ER and plugging it with whatever is on hand in the meantime. So this kit has to be at his side at all times.

And lastly, on his foot, a sensor leading to a cord, leading to a pulse oximeter. Which, if you can believe it, ALSO came with a nifty container and a strap. We would usually hang this on the IV pole too, to keep it at eye-level and make it easier to hit the mute button.

Add in all the usual baby stuff, and you can see why we only left the house for doctor’s appointments. Add in a twin, and you can perhaps understand why, after I (in a fit of optimisim one fine April day) once loaded up the stroller with my boys and their gear for our very first walk, and the damn sensor fell off his foot and wouldn’t stop alarming and I couldn’t get it back on, I burst into tears less than a block from my driveway.

This post will be continued (at some point), when we add in the joys of TPN (2 IV pumps and bags and yet another nifty container with a strap!).


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