Saturday, February 25, 2017

7 one-month takes


So apparently Jackie is five weeks old today.  They certainly have not been racing by, but it still seems kind of startling when I do the math.  Five weeks is too late to change my mind and start spelling her nickname "Jacky," right?  Especially as I can't change the spelling on the tags in my sidebar.

This is the stage where you stop thinking, "Wow!  I'm recovering so fast!  The worst is over!  Every day gets easier!" and start thinking, "I'm as recovered as I'm going to be for a long time yet, and I can't believe it's still so hard."  That is, that's what I'm thinking this time around, and I remember it from last time.  I don't really remember this at all with Michael, and Marko was so much easier because there was only one of him.

Jackie (Jacky??) is firmly established as Not an Easy Baby.  All of my babies have had the unfortunate habit of waking up from naps while they're still tired -- usually after about 45 minutes.  With Marko it was easy, I simply nursed him or rocked him back to sleep and he'd take another hour or so.  But that's an option not open to me now that I have other noisy kids -- once the initial edge of tiredness has been taken off, the slightest noise gets the baby interested in what's going on and they won't go back to sleep for two more hours, no matter how tired and cranky they are.  With Michael my solution was just to have him take 45-minute naps four times a day, which was inconvenient and left him cranky and tired much of the time.  With Miriam I gave up and just held her for all her naps, which about made me lose my mind as well as causing me to neglect my other kids terribly.  And with this one, I haven't yet come up with a solution; I refuse to hold the baby for all her naps again, but I'm not keen on her constantly being cranky and tired all the time either.  I guess the only real solution is Keep Trying, because she occasionally does take a really solid nap of a couple hours.  I love these, but of course I spend the whole time worrying she is crying and I just don't hear her on the monitor, or else perhaps she is dead.  It's just so unusual that I can't quite believe a child would actually sleep that long in the daytime.


But she is worse than all the others in one respect, which is that she won't even GO to sleep.  Instead, she drifts off while nursing and then wakes up five minutes later with big bright eyes.  You can rock her to sleep instead, which will work for five minutes before she starts thrashing herself awake.  All the baby advice (besides the idiotically unrealistic "put the baby down awake") says you should hold the baby until they pass into a deep sleep before you put them down.  This is impossible anyway because we never ever get the half hour of relative quiet that this would take, not in this house -- someone always comes right up to me demanding a snack or having a fit or wanting to give the baby "just one kiss!"  But I know it's not just that because she spends all evening doing the same thing after the big kids have gone to bed: nurse, doze, thrash, wake up, fuss because tired, nurse ....  And she can do this for hours because the little snatches of sleep she gets are just enough to tide her over.  Eventually she doesn't even want to nurse anymore and then you're really screwed.

Obviously this doesn't happen every time because she does sometimes sleep.  But for the life of me I don't know the secret.  More awake time before attempting a nap? (Possible.)  More burping?  (Burping wakes her up.)  But the long and short of it is that naps are totally unreliable and also she stays up till eleven pm or even later every night.  She's sometimes willing to sleep in a little late, but that doesn't matter because of course the other kids are up by seven.

The one bright spot is that she reliably sleeps a good three or four hour chunk in the middle of the night.  In fact last night it was almost six hours!  This is truly delightful, especially on those nights when she actually sleeps in her crib instead of on me, but it also has the awful downside that we're not ecologically breastfeeding if she sleeps that long.  I cannot wake her, because I desperately need the sleep, but I fear the eventual result will be an early return of cycles, which, for me, means a nasty hormonal mess as prolactin and progesterone fight for supremacy all month long.  Oh, woe.  But the thought of willfully ending my nighttime bliss, the ONLY time I get to myself, and possibly triggering hours of sleep-wake up-fuss-sleep is just unbearable.


Despite how awful she is to deal with, I think I am beginning to bond with her somewhat.  The first week or two I was treating her like a hungry lump, but I realized that if I talk to her and treat her like a person -- even though she does not understand or care -- it helps me feel like she is a person.  I'm also taking lots of pictures, both to help me remember to appreciate her now, and to look back on later, after I do have a relationship with Jackie and want to remember what she looked like as a baby.

Miriam, of course, helps with this a lot by adorably trying to interact with her baby sister.  It seems obvious to me that Jackie either does not care or actively dislikes everything Miriam does -- I mean, getting kissed to within an inch of your life isn't exactly fun for anyone -- but Miriam insists that "her baby" loves it, so, whatever.  I don't mind playing along so long as she's not actually smashing the baby's face.


So Marko has been assessed by the school district now.  I didn't know this before, but thanks to IDEA, a federal law, even homeschooled kids are entitled to the same services for disabilities as the kids in school.  This includes assessment for disabilities, provided the school agrees that the child is suffering educationally from them.  That was a little scary because I had to explain to a table full of teachers why I thought Marko needed to be assessed.  Since most of his issues are social, I wasn't sure I'd be able to make my case, but when I pointed out the large number of adaptations I make to our schoolwork (like hanging over his shoulder every minute to keep him on task, and designing our entire curriculum around his obsessions) they said that this was definitely an educational problem as well as a social one.  Especially when I pointed out that he mostly will not talk to grownups and he might want to go to school someday.

This process was full of trials for Marko.  He had to have his eyesight and hearing assessed, read to a reading teacher, get assessed twice by a speech therapist, and have two long assessments by a psychologist.  In addition, both John and I filled out lots of questionnaires.  We got all the results from these assessments in writing, and then I had our eligibility meeting with a big panel of school professionals.  The whole process was scary for both Marko and me, but we got through it okay.  I was impressed with how well Marko did actually manage to communicate with the adults, despite the crying and rolling-around-on-the-floor meltdowns he had beforehand.  We could see, though, from the reports of the different professionals, that he had been very anxious and not done as well as we know he can with us.  Though really I don't suppose it matters -- if he scores low because he can't communicate very well, that's still a problem even if it's not the problem they were testing him for.

In the end they decided that he has "symptoms consistent with autism."  This is not an official diagnosis, but it is enough to make him eligible for special education if he were enrolled in school.  However, there isn't really anything they can do outside of school for him.  Speech therapy is available to homeschooled kids, but the therapist actually said it would not help because his speech problem isn't really a problem with speech itself, but something further inside his head ... she thought it was anxiety, but the psychologist thinks it's in his mental processing.  He has a lot of knowledge but has trouble accessing it quickly when he wants it.  So he might volunteer the information "two plus two is four" on Monday, but that doesn't mean he can produce the answer for me when prompted on Tuesday.  In the same way, it takes him extra time to put together and say a sentence, even if he knows all the words he wants.

At any rate we're assuming, based on this, that he does have ASD.  But that leaves us still stuck on what to do next.  I want to get him officially assessed, but that costs a mint and our fake insurance won't cover a penny of it.  I want therapy for him, but that's also not covered.  If he gets diagnosed, he's eligible for Medicaid which will pay for the therapy, but we can't afford the first step.  It may be that a regular pediatrician will diagnose him on the strength of all the assessment results we have, but they might not think it's enough and then we're out the money we spent for the appointment and are back to square one.  The whole thing is doggone frustrating.

We are seriously considering putting him in school, for next year at least, just so he can get some special help from someone who does know something about autism.  The sad fact is the "one-on-one attention" that is supposed to be the benefit of homeschooling isn't really available at home right now.  His siblings hang around and distract us both.  I've tried giving them work, too, but Marko is always way more interested in what they're doing than in what he's supposed to be doing.  Michael wants to be wherever Marko is, and Miriam wants to be wherever I am, and Jackie is of course attached to me like a tumor half the time.  So ... it's not what you would call an ideal learning environment.  We are making progress all the same, but all these assessments have really taken away my confidence that I'm doing it right, or that even if I'm not, no problem because kids are resilient/there's plenty of time to catch up.  Normal kids might be great at naturally challenging themselves and going for new things, but that's specifically the sort of thing autistic kids struggle with.  They want to stick with what's comfortable and familiar.  There have been times when Marko has a big drive to learn about something, but he hasn't felt that way since we've moved ... and I can't afford to let him learn nothing for a year, you know?  Not if he's already behind.  At the same time I know pushing too hard makes him shut down, and I dread even suggesting to him that we might make him go to school.  He hates the very concept.  I did want him to go to school someday, like in high school maybe, but he does not seem ready now, and he is terrified of other adults, large groups of kids, and being without me.  It's tough.  On Monday we are going for a tour of the school and to watch the special ed classes, so he and I can both see what he'd be in for if we did enroll him.  I think it might be great for him, for his confidence and his social skills and so forth ... but first he'd have to get past that initial terror of change.

I feel very mixed-up about this emotionally.  On the one hand, I love homeschooling.  I don't want to stop.  He's my little boy.  How can I trust other people to take care of him as well as I do?  While on the other hand, I can't help but admit it does kind of appeal, to have one less kid to worry about during the day, and to know he's getting the sort of extra help he needs without my having to neglect the whole rest of the family to give it to him.  And maybe we could go back to homeschooling another year.  I just don't know.  I don't want to be wedded to the idea of homeschooling if it's not working ... but on the other hand, I'm not sure it isn't working.  Yes, there's stuff he struggles with, but would he be doing any better in school?


I should say, though, that Marko seems to have pulled out of the rough patch he was in throughout December and January.  He no longer cries a dozen times a day "because he misses that lamp we used to have" or "because he's not excited about anything like he used to be."  I can't remember whether or not I've blogged about that.  My feeling was that he felt upset and sad about the changes in his life and was latching onto small details to explain it.  But he seems a lot happier lately -- fewer tears and fewer meltdowns.  He and Michael have a healthy balance of different obsessions that they pretend about all day -- Harry Potter and My Little Pony mostly, but Minecraft is still getting plenty of attention, and yesterday they surprised me by playing Redwall again, after about a year since it was a major interest.  Another reassuring thing is that he's stopped having so many accidents ... which, given that he has been potty trained for four years now, certainly worry me when they happen.

My friend with two autistic children, who has been a major resource to me right now, asked me the other day what behaviors Marko has that he most needs help with.  What things would we address in therapy, if he had access to therapy?  And I wasn't sure what to say.  He's mostly really great!  I don't actually have a lot that I think he needs to change.  But on the other hand, there are lots of little things.  I wish he would at least try to stay dry at night.  I wish he would more reliably use his fork at meals.  I wish he wouldn't say things "don't even exist" when he doesn't like them.  I wish he would introduce himself to other kids or say hello or goodbye to his friends.  I wish he wouldn't run and hide when a strange adult comes into our house.

Perhaps I should try to encourage these things more -- arrange more playdates, with prior coaching about how he can say hello to the other kids.  Go to story time at the library and ask him to say hello to the librarian.  The trouble is that he just doesn't want to try these things, and I'm not sure how to get him to cooperate.  He told me the other day that he has one friend and that is enough, he doesn't want to meet any more people ever.  Yet I suspect he would really enjoy having more friends if he would get past the initial fear of meeting them.

It's just so hard to know when to push and when to give him some space.


Michael is my relaxing child right now.  He has no real issues.  He's not even a little bit anxious or neurotic.  Sometimes he throws a fit, and normal decent parenting works to de-escalate it.  He had a tendency to be rude, I have been reminding him about please and thank you, and he's started saying those things very reliably.  He often gives me a hug and kiss for no reason, or a big smile and a hello.  He's suddenly taken an interest in letters and seems to know a great deal more than I've ever consciously taught him.  I do not worry at all about him.

And Miriam, aside from her tendency to maul the baby with love, has been doing fine as well.  She occasionally asks to nurse, I offer a book instead, and she's fine with that.  I really wish she could talk in a volume under a shout, or play independently EVER, but, well, she's two.  She's slept through the night for many nights recently, though not for the past couple.  Anyway it seems she is making progress on that.

We've had some really nice weather for a few days, which is such a help.  I can kick the kids outside while the baby naps and rid myself of all the stress I normally have about the noise they're making.  (I am not sure the noise they make makes any difference to how much the baby naps, but I always worry it will.)  So they run around being completely bananas, the baby naps for her brief moments, and I get some peace and quiet to drink tea and read mystery novels.  (Dorothy Sayers; highly recommend.)

Jacky giving big sister the stiff arm


And how am I doing?  Eh, I've been better.  I've also been worse, so, bright side there.  Sometimes I am totally fine.  Days when Jackie naps are delightful.  I do some chores, lavish attention on my big kids, and then have some wonderful time to myself.  Days she does not nap are horrible.  I get so touched-out, I want to crawl out of my own skin.  I start feeling irrationally angry at the world.  I put all my hopes on Jackie actually napping later on, and then when she fails to do it, I get even more angry because of the disappointment.  I am very proud of myself that I haven't yelled much or hit anybody at all, even when they are totally responsible for waking the baby.  I figure so long as I can keep my ticked-off feelings from affecting anyone else, they're no different from a headache -- just something I have to get through.

I just wish there were a cure for them other than long periods of quiet and no-touching.  Exercise does help, but since I'm not fully recovered from childbirth, I probably shouldn't knock myself out with long walks or vacuuming or whatever.  At any rate hopefully I can start some exercise soon, and then maybe I'll feel better.

When I'm not feeling angry, I cycle through all the other bad feelings.  I've had a few days of inexplicable sadness, a few days of excessive anxiety, a few days of intrusive thoughts.  The intrusive thoughts are probably the worst: I can't seem to get my mind off the possibility of some gruesome thing happening to the baby, or the fact that I will someday die.  Or I think about how great my life would be right now if Jackie had never been born, and then feel overwhelmed with guilt.

But the anxiety has been bad some days too.  I always thought religion was no comfort in distress until I lost it; now I can see just how crippling anxiety is when you don't think there's anyone to bail you out, or any long-run plan which will make it all worthwhile.  Basically it means there is no one looking out for your kids besides you, so you have to make sure you worry about All The Things, certain in the knowledge that if you fail, it means the extinction of everything your child is or could someday be, which will be 100% your fault.  If it were just a matter of my preferences, I'd love to believe this stuff were out of my hands.

Despite all the various kinds of sadfeels, I also feel happy sometimes.  This nice weather is great, and every time I am able to spend some time just sitting under the open sky, I feel very happy and relaxed.  Of course it's only five minutes before I hear the baby cry on the monitor, or Miriam starts demanding I go into the magnolia tree with her and play house, but it's something.  I also find a lot of relaxation in reading; I might not be able to knit or spin while holding the baby, but I can read for hours and it helps distract me from the "ahhhhhh someone's always touching me!!!!" thing.

As during pregnancy, I have to focus on either the moment or the long view.  I can't think of the months ahead when I will still be dealing with all the same things I am dealing with today.  I have to remember that by midsummer I will have a baby who can sit up in a high chair and let me eat my dinner with two hands.  Or that within a year, my little girls will be playing with each other for real.  Conversely, I can stay in the moment, and think "hey, right now the baby is sleeping and I am able to write this blog post!"  Nothing worse than a whole nap going by and you realize you never appreciated it, but only scrolled mindlessly through facebook getting mad at strangers.

And how have you all been?


The Sojourner said...

Ugh, yes, I so wish I could go back to believing that J is resilient enough that my parenting doesn't make much difference one way or the other.

I suspect that all the Early! Intervention! Is! Key! stuff is meant to be empowering but it always makes me feel as though I'm completely ruining my child's future every time I put him down in front of the TV instead of doing some enriching one on one activity.

The Sojourner said...

Oh, and you would not believe the number of times I've said, "Leave your sister ALONE while she is trying to EAT."

(You would totally believe it.)

Melissa D said...

Things sound really tough right now. I hope you are able to find peace especially around the situation with Marko.
I don't know what you should do, but I can tell you that I wish my brother (second of seven, I am the oldest, he was finally diagnosed with autism at 13!) had had a truly specialized education (not a dumbed down version of Seton). I think my younger siblings and I would have gotten a better education. As for him - he made it through "high school" and got a Seton diploma, but he has never learned to recognize his own issues and work on them himself, something I wonder if he would have learned better if my mom hadn't been quite so good at shoving him through his problems via her own power (while the rest of us learned that for schoolwork we could be either hopelessly needy, or defiantly independent - I was defiantly independent.)
Again, I don't know what you should do. But you have a lot on your plate, and special ed teachers have a lot of knowledge on how to deal with ASD issues now. There is nothing wrong in using the help of experts. They can't love him like you do, but they might have he knowledge to help him in some ways you can't.

Cristina said...

1 -- Since there are only three posts so far with the tag "Jackie", why not just delete the original tag on all three and use the new one? I remember doing that to over twenty posts on an old blog, when I decided I didn't like the old label any longer.

4 -- As you know, I'm very pro homeschooling, but I also think that "surviving" the transition from home to school makes a great rite of passage for children. And like all rites of passage, it's meant to be terrifying. It only stops being terrifying after you go through it. Having said that, you and John are the best judges of whether Marko is ready for something like that.

6 -- Miriam looks so much like you in the top picture! But Jackie's (Jacky's?) annoyed expression and "Talk to the hand" gesture steal the whole show!

7 -- Mothers all seem to worry along the same lines. The doctor of another friend of mine recently found a strange mass in one of her breasts. (Spoiler: It's totally benign!) She has one son who is on the spectrum and another who was adopted internationally and has medical issues of his own. So when she learned about the mass, her first thought was: "Where will my husband find a new wife who will be nice to my children???" (Another friend once worked herself into sobs wondering about what would happen to her family if she died.)

My first friend's descriptions of her first son are similar to your descriptions of Marko. He is very musically gifted, and wants to learn everything about something once it catches his interest (last I checked, those were: boats, trains, the violin). But he also struggles in the local community, and his mother says that whenever she thinks they can finally coast, something happens that reminds her that son just isn't neurotypical. It doesn't mean he isn't wonderful and worth being embraced by the community; it just means that what comes like breathing to us normies is so much harder for him. But the real reason I bring her up is that she has found that being close to nature nurtures his self-control. (Pun not intended!) They often take long walks in the woods, and he has lately taken to bringing a notebook and pen with him so that he can write poetry when they take a rest. I don't know how feasible that would be where you live (or you know, with three other small children to care for), but I thought I'd share anyway. And I'm a big believer in manipulating environments in order to effect change.

PS -- The matching mother-daughter outfits are adorable!

PPS -- I just switched language schools. My former teacher is going to be so upset when he finds out, but every interaction I have with my new teacher only highlights what a great decision I made by going with her. The only really bad part is that it has turned my schedule upside down and I'm sleepy and drained all the time.

Anonymous said...

Put Marko in public school. Special ed services are an incredible help. He will catch up by leaps and bounds. You can always pull him out and homeschool later, but you will never get these early, crucial years back.

Sheila said...

Sojourner, the "early intervention" talk makes me feel horribly horribly guilty because we didn't catch this till now. I suppose this is how formula feeding moms feel when they hear "breast is best!"

Cristina, I was never scared of going to school. I was so glad my mom was finally going to let me go in the fourth grade .... and then it ended up being so much harder than I had imagined. It just IS hard. I so wanted to keep Marko from having to worry about any of that. :(

Oh and Marko loves to play outside ... every single day it's nice, he spends 3/4 of it outside at least, and is so happier and easier for it. Spring cannot come fast enough.

Today we toured the school. There was a lot that encouraged me -- the many special education professionals, the cool materials I can't possibly afford to duplicate. But Marko stuck to his guns about not wanting to go. And the special education teacher privately confided to me that she thinks homeschooling is very likely the best for Marko because I can adapt more than the school can, due to Common Core and all that. I'd totally agree if Marko were an only child, but as he isn't, I really wonder if I'm giving him even as much attention as an overextended teacher's aide could. There's still plenty of time to make the decision, though.

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