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I have started so many posts the past few years with the heading of “An Update on our Preemie” and never have time (or take the time, I guess) to finish them. So I thought I would share this letter I wrote to the principal and possible kindergarten teachers at the school he’ll be going to in the fall.

I can’t believe our little guy is 5.

So here is the letter, though incomplete and imperfect:

A. is a little lover with a grand imagination. He is a little different and very sweet.

He has an IEP and is coming from A.E. Preschool. He has some delays with motor skills (hitting all milestones late, but still reaching them) as well as some processing issues with some sensory and social situations. He was born three months early. Overall, he seems to be “catching up” to his peers, and placement in a “normal” kindergarten class makes sense for him.

A. is very fond of other kids. He cautiously walks up to a kid he’s never met, makes eye contact as though he is beholding a saint, then slowly makes a move to hug the kid. Often, he tries to follow with a kiss on the cheek. We have been working on this for years (he used to indiscriminately hug all kids without reading their cues, and regardless of their protests) and he has gotten MUCH better (he takes his time and reads their cues but heeds them only half the time), but still has work to do (kisses should only be for family; he needs to give others more personal space; he is working on trying to engage other kids in other ways– telling them his name, asking to play, etc.).  If someone is hurt or upset, A. is right there wanting to comfort.

A. can read. He reads entire books by himself, occasionally asking us words like “persuade.” He seems to be at about a 2nd grade reading level.

He loves to make up stories. He loves music and dance. He loves acting out parts in little “plays.”

He is wildly uncoordinated and will need extra help if he is to engage in any kind of sport activity or game that engages gross motor skills. Unless he has persistent guidance, he won’t enter into a game involving gross motor skills, and will instead stand aside and enter into his own private world, which usually means narrating aloud a story he is making up. Or, he’ll talk to himself about stuff that’s happened in his life.

A. was in preschool (before attending A.E.’s Preschool program) with several of the other kids coming into kindergarten at P. this year. He has had some sweet friendships with some of them, and was bullied by some of them.

He is friends with C.P. (we live in the same building and they’ve known each other their whole lives). They love each other and play well together. Though, they would play even better if he could do a better job respecting her personal space and wasn’t always trying to hug and kiss her.

He plays well with I.E.– they were in preschool together when they were 2. They saw each other again on the orientation night a few weeks ago and they held hands a lot that night and were sweetly responsive to each other.

In preschool (age 3) he was bullied by C.M. and A.D. They were consistently mean to him, not letting him play with them or with their friends and always telling him to go away when he walked over to play.

In preschool (age 3) M.K. was nice to A. and they interacted well, though they really only parallel played together.

Dynamics with all of these kids could be very different now, but we were told it would be helpful to describe past relationships. Of course we can’t protect him thoroughly forever, but we would like to do everything we can to keep him from being bullied. A. is very trusting of other kids and is one of those kids who keeps coming back for more, keeps trying to engage, even when the kid is being mean. It doesn’t help that sometimes he intentionally annoys other kids just for the sheer joy of getting a reaction.

 

With no coaching from us, when he finds a stick he imagines it is a trumpet or fairy wand or drum stick, rather than a sword or gun.

afc_five

 

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I’m leaving off the “Disease” in Reactive Airways Disease (RAD, which, incidentally, is not rad) because it makes it sound so serious. But Mister Finn does have this. RAD. Reactive Airways, as I’ll call it. Reactive Airways is what it sounds like. The lungs’ airways react to something–like a cold–by behaving as though they have asthma. Here is a picture.

As you can see, it sucks.  There is wheezing and difficulty breathing just as with an asthma attack. Treatment is the same as with asthma: albuterol, and if necessary, steroids.

A’s first episode was in Summer of 2009 and he has had about seven episodes since then. They are more or less the same:

1. A. gets a cold.

2. a few days after the cold begins, wheezing or noisy breathing starts, with chest retractions

3. we start giving him albuterol treatments via nebulizer

4. if he can’t make it four hours between breathing treatments we’re supposed to take him to the doctor. If the episode is happening not during the clinic’s open hours, this means the Emergency Room.

5. Emergency Room, because the episode usually happens at night and on weekends. Features major 2 year old anxiety, throwing up, awful tests (such as the test for RSV), a few nebulizer albuterol treatments, chest X-rays, the giving of oral steroids, the throwing up of oral steroids, the manual injection of steroids.

6. We go home with oral steroids.

7. Steroids (crushed prednisone tablets mixed with apple juice concentrate and squirted via syringe into his mouth, followed quickly with chocolate bunny grahams usually intercepts barfing) and nebulizer albuterol treatments work, and A. is fine within a few days.

8. If child is in preschool (or engaged in some similar germfest), repeat from beginning in approximately one month.

The whole thing is hard on him and us. You can die if RAD is left untreated. It feels very wrong and mean for the universe to present me with my child’s mortality every month. It seems that many people go an entire childhood without courting death, save for an averted gumball choking. Why is my child’s life up for negotiation every few weeks? Huh, universe? I want an explanation!

The universe does not give me an explanation, so I turn to google. Also, I ask Mister Finn’s smattering of pediatricians (I really wish we could see the same person every time like the baby books led me to believe we would, but it doesn’t seem to be our luck) the same questions over and over again. The answers I get are mostly reassuring. This is a relatively common childhood “disease” that is often outgrown. It is not a guarantee that A. will have asthma the rest of his life; likely, he won’t.

Because the Albuterol treatments are usually not enough and he needs steroids, his doctor recommended and prescribed Pulmicort (an inhaled steroid) to be given daily via nebulizer. Every day, even if A. has no symptoms. It would be a preventative measure to keep his airways open and make it less likely that he’d have a full blown RAD episode with every single cold. It’s just hard to think of giving him medicine every single day. That makes it seem like he’s sick all the time.  Also, there are side effects, like oral thrush and irritability and the increased susceptibility to respiratory infections.

I need to call a pediatrician to talk about it more. If you’re reading this and you’ve been through this with your child, I welcome any stories you have to share.

 

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poor Leo

A. loves a book that I loved when I was little: Leo the Late Bloomer. Leo really goes through a rough patch where he’s not doing things right [yet] and things aren’t going well.  When A. is overwhelmed by something, can’t do something right, or things aren’t going well, he dramatically recites this part of Leo the Late Bloomer. He’ll be totally frustrated, crying and screaming and moaning, while his legos have betrayed him and gone to pieces, wailing and still enunciating, “He couldn’t read! He couldn’t write!  He was a SLOPPY EATER!”  It is so sweet and pitiful and poignant.

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So here’s what’s weird:  No child other than mine has cried or shown any signs of a meltdown in two days of preschool.  WTF, toddlerz?? They all are terrifically angelic. I was actually relieved when a little girl hit my child on the head (lightly, to reprimand him for taking her doll). Today was hard. I’m exhausted. Mister Finn was overwhelmed. Wifey came with us, even though the plan was for me to go alone with A. But it was only 8am and I felt like my brain might explode from the stress of it all, and then the dog had diarrhea.

Preschool feels like preemie judgement day, whereby it is made known to us and the world that A. is just like any other two year old, or different, due to his preemieness. There are a host of other two year olds running around to compare him to. There are a host of other parents around to do the comparing. WHY did he have to end up in a class of seasoned, gifted preschoolgoers?

A. is different, due to his preemieness. He has a mild version of Sensory Processing Disorder. This is a disorder that includes many “normal” people and spans all the way to people who can barely function. It is common with preemies; especially ones that had IUGR. Mild cases often go undiagnosed, as A.’s probably would have if he hadn’t been a preemie with many caregivers on the lookout for it. It is something that improves dramatically with therapy, and kids usually grow out of it with or without therapy. A. has been seeing an Occupational Therapist to help with oral aversion issues (not wanting to eat solid foods, brush teeth, etc.) , and other hypersensitivity issues. People with SPD are often either hypersensitive (extra sensitive to their environment) or hyposensitive (not sensitive to their environment, and needing a lot of stimulation in order to have a response).  A. has made a lot of progress with his OT. He’ll eat most solid foods, but won’t let us brush his teeth. (This freaks Wifey out.)

Since his version of SPD is still within the range of normal two-year-old behavior, it has been hard to discern what is going on when he has a meltdown or heightened reaction to something. Is this the sensory/preemie stuff?–we ask each other all the time–or normal two-year-old stuff? Or just his personality? Or maybe he just didn’t get enough sleep last night? It’s usually a combination of all of the above, mixed together into a toddler cocktail of distress.  SPD and “normal” mix and meld into each other. One could argue that all toddlers have SPD. Meltdowns are frequent, and are caused by things not going the way he would have liked.  Some days there are many meltdowns, some days there are none.

So, it was hard to know what to expect from preschool. His OT thought he was ready, and didn’t recommend a special-needs preschool, so we were mostly optimistic. (Cautiously optimistic: the phrase that hovered over the more peaceful days of my pregnancy, and A’s NICU stay.)

Yesterday after preschool, A. talked a lot about Teacher Linda, and all of his new friends, with delight. And he was delighted to be going to preschool again this morning, until we neared the classroom, when he started crying and running back to the car. We managed to coax him inside, and he did some playing and some grabbing of toys, trying to organize them somehow, I think. He greeted Teacher Linda, but did not want his name tag pinned on his shirt. He read some books, then started crying and ran for the door in a panic. Then we coaxed him back, he played with the doll house, where Ingrid hit him. He cried and ran for the door in a panic. We coaxed him back, and we enjoyed Teacher Linda’s puppet show. The puppet show ended, and he cried and ran for the door in a panic. You get the idea. Snack. Meltdown. Books. Meltdown. Music time. Meltdown. Transition = meltdown. There were some nice moments between meltdowns, but it was mostly meltdowns.

But aren’t meltdowns on the first days of preschool for a 2.5 year old to be expected? I might have thought this was all somewhat normal, if it weren’t for the fact that no other kid in the class had a single meltdown. And a few of their moms left them for the whole class! Alone! (as is our plan, and the class’s design) where they fended for themselves just fine, and were guided like ducklings from play to snack to handwashing to music. They fell right into place, while our little guy, with TWO parents present, was overwhelmed and under a lot of stress.

Sigh. This is all just really hard. It does help to write about it, though.

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Mister Finn often requests music: “Should we put on some music?” Sometimes, if the CD we play isn’t the one he wanted, he says “Should we put on some different music?” He says it again and again until we change the music.

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A poem, by A.

"Honey"

did you say honey?
did you say honey?
did you say honey?
I did say honey!
honey
honey bunny
honey bee hive
Bonyo

(Bonyo is a boy in a book whose father climbs trees to harvest honey.)

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Mister Finn and I went to the park the other day, which was hopping with kids of various ages.  A. right away zeroed in on the one kid that was his size and age and trotted off to her, high-stepping, with wings flapping.

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