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One thing that I haven’t mentioned on my blog before is that Sweetie has Asperger’s Syndrome.  I hadn’t mentioned it because I used to ask him to read my blog, but I’ve realized that I need my own private place to put my thoughts down, without risking about hurting anyone’s feelings.  This morning I shared with Sweetie that I haven’t been posting on my blog as much lately, because knowing that he reads it makes me hold back on what I say.  I added that I haven’t even shared my blog with any of my friends, because I tend to edit what I write in terms of who I think my listener is.  And I really need to let it all out.  Sweetie immediately offered to stop reading my blog.  He didn’t even blink, he said that he totally understands.  Actually, I think that he has a blog out there that I’ve never read.  I so appreciated his understanding, and not taking it personally whatsoever.  Just one of the many amazing things about my husband.

Sweetie was diagnosed with Asperger’s Syndrome in February 2008.  Ironically enough, it was  his mom who suggested that he be evaluated for Asperger’s– not me, the one who works in the autism field!  But up until then all of my professional experiences with autism had been with people who have the most severe forms of autism, who aren’t able to talk or who talk very little.  The fabulous individuals with autism whom I worked with had trouble with problem behavior and self-stimming– people whom you’d easily recognize as having autism.  I have a friend whose son has Asperger’s, but I didn’t really know much about it, and I certainly didn’t know how to recognize it in adults.

In the summer of 2008 Sweetie’s Mom suggested to me that Sweetie might have Asperger’s Syndrome (AS).  I guess she’d been reading up about it or something.  She brought it up to me by first musing that Sweetie’s father might have AS– and then she segwayed into wondering if Sweetie might have AS.  The thought had never occured to me.  I asked her some questions about Sweetie’s childhood, about some of the common signs of Asperger’s in kids, such as talking like a “little professor.”  I only knew about the most obvious signs of AS in kids.  Sweetie’s mom shared some things that got me thinking.  Yes, Sweetie definitely used vocabulary that he picked up that was way beyond his level, among other things.  I kind of put the question– does Sweetie have AS?– in the back of my head to think about later.  When I looked at a number of things about Sweetie that I’d always thought of as unrelated– for example, his sensory sensitivity– it kind of hit me in the head– oh, of course he has AS, how could I not have realized it!

But in the end I’m really glad that I’m not the one who had the idea that Sweetie might have AS.  It means the world to me that I see people for who they are, not for their diagnosis.  Sweetie is Sweetie, just as each of my students is a beautiful, unique individual.  I worry sometimes, though– if I’d realized that Sweetie had AS when I first met him, would I have approached him differently?  I worry that I might have gone into a caretaker mode, rather than into an equal-partner mode.

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When Norah learned that I don’t have a baby shower planned, she offered to throw one for me!  Yeah!  I can’t wait to celebrate Paulie in this special way.  And on a practical level, I wouldn’t mind getting help buying all of the things that Paulie needs.  It seems like there are just so many little things– burp cloths and bibs and socks, oh my!  I worry about the cost of all of those little things adding up.  So the baby shower will really help.  But mainly, I want to celebrate my pregnancy, and celebrate Paulie, with all of my wonderful friends!

So far, we have Paulie’s crib, changing table (well, it’s still at Grandma’s house, being put together), car seat, bare minimum number of cloth diapers, diaper bag, Snuggli, and what I think are enough clothes (How many times a day do you normally have to change a baby’s clothes, because of spit-up, etc?).  I’ll be breastfeeding him, at least he’s set in terms of food.  So we have the very basics, plus some nice extras.  I plan to buy a playyard with a bassinet insert for him if I don’t receive one at the baby shower.  He’ll sleep in the bassinet, right next to our bed, while he’s tiny, and then we’ll move him into bed with us.  He’ll take naps in his crib (that is, when I’m not taking naps with him!).  I don’t want him in our bed alone.  I’d like to get a stroller for him as well.  I’m not going to bother with the bouncy seat or the swing at this point.  It seems like some people buy really nice, expensive baby-holders but then the baby still cries to be picked up!  My plan is to wear him a lot.  Once he’s born, if he protests being put down to sleep, I’ll have him try out a swing or a vibrating bouncy seat in the store, and see if he likes them.  I don’t want to clutter up our apartment unnecessarily.

If anyone knows of good places to get discounts on baby stuff (or budget substitutions for baby items), like disposable breast pads, I’d love to hear about them!  Obviously I won’t be putting things like that on my registry! 

Thanks!

A very dear friend of mine came to visit yesterday.  I am SO grateful to have her in my life.  She and I were best friends all through high school and through most of college.  High school was really, really hard for me, and I faced some pretty significant challenges in college as well, and she was always there for me.  I feel like it was she who kept my spirit alive during the really hard times in high school, with her love and her laughter.  I am so glad to have her in my life.

We weren’t in touch for years after college and just got in touch again about a year ago (maybe a little more?).  I am SO grateful to have her back in my life.  She came to visit yesterday, and she’s really the closest thing to family that I have.  She’s like a sister to me (in the way that women who don’t actually have sisters romanticize sisterhood– best friends without all of the bickering and rivalry!).  I am **so** glad that she’s in my life and that she’s going to be in Paulie’s life as well.  I feel like I don’t have a lot to offer Paulie, in terms of family– I’m not in contact with my family of origin at all, as they’re not safe people to be around.  But Norah is like family to me, she knows me so well, she even knows parts of me that Sweetie doesn’t know!  Sometimes I feel like there are parts of me that Sweetie will never truly get, parts of my past, since he’s never met my parents and didn’t know me in high school and college.  I feel like Norah is a safe repository for my past, the good things and the awful things, and she loves me like crazy just the same.  Her parents are deceased, and so she knows what it is to need your friends to be more than friends, to be your family.  She has an absolutely wonderful husband (like me!!) and if anything were to happen to Sweetie and me, they would be at the top of my list for who I’d want to raise my kids.  I asked her if she’d be Paulie’s Aunt Norah, and she said yes!!

I’ll say it again– I am so glad that she’s in my life and in Paulie’s life.  I don’t feel so empty or alone any more.

“Whether you think you can, or you think you can’t, you’re right.”

                                                                                                          –Henry Ford

I guess I need to focus on how I **can** make things work after Paulie comes, rather than worrying, “what if I can’t!?”  I would love other people’s suggestions!

I hate to complain, and I don’t say this to complain, I write this just because I feel like I need to get my feelings out.  When I’m able to acknowledge and respect my negative feelings, I’m then better able to be grateful for all of the joy that is around me.  So here goes.

I want a mom.  My parents are not in my life at all– through my choice, as they are not safe people to be around– nor is my only sibling.  My biological family is pretty much a big, dangerous mess, and I’m extremely proud of myself for breaking out of that situation.  There are a few relatives that I keep in touch with but I’m not close to any of them, and they’re too far away to visit (which is actually probably for the best).  But some days I just ache for a mother, especially with Paulie on the way.  I want someone to throw a baby shower for me.  I want someone to make me feel special.  Practically speaking, I really wish that I had someone who could come and stay with me after Paulie’s born, once Sweetie’s off from work.  Sweetie is hoping to take two weeks off from work, which will be great.  I’m so grateful that he’ll be able to be home so that we can spend time as a family.  But I do wish that I could have some help after that.  I’m worried about how long my recovery time will be if I need a c-section — I have a heart-shaped uterus and so there’s a chance that Paulie will be breach, in which case my obstetrician will want to do a c-section.  Two weeks is a nice amount of time to recover from major surgery, *if* you’re actually sleeping and resting, which is not what I’ll be doing with a newborn at home!  I’ll be sleeping in snatches and breastfeeding all the time.  I worry that breastfeeding will drain me, even more so than growing Paulie now can drain me.  And I know from past experience that I don’t sleep as deeply when there’s a baby in the room– but I can’t stand the idea of little Paulie sleeping in a seperate room all by himself.  I’m so afraid of being overwhelmed once sweetie goes back to work.  I want so badly to be a great mommy for Paulie.  I worry some times that I’m biting off more than I can chew.

I’m thinking about asking a good friend of mine if she could come and stay for a little bit after Sweetie goes back to work.  Since I don’t really have any family to do it.  I was hoping that my mother-in-law would volunteer to come help, but she keeps telling me that I’ll be back on my feet in just a few days.  Now, if you knew her, you would not be suprised that she’d say this.  She is like the energizer bunny– I’ve never known someone as active as she is, someone who can just go, go, go.  Besides, she was only in labor for four hours with Sweetie, and only for two hours with Sweetie’s sibling!!  Can you imagine!?  So obviously she doesn’t know what it’s like to recover from, say, a 14-hour labor, or a c-section.  She’s had to deal with multiple major back surgeries, so it’s not that she doesn’t know about recovery– she knows that all too well.  But she didn’t have to take care of a newborn while recovering.  And I feel like, even if she did, somehow she’s just stronger than I am.  She just keeps going (yes, like the energizer bunny!)

Sweetie’s expressed that he’s afraid that he’ll come home from work and find me in bed crying, and have to do everything for Paulie and take care of the house himself in addition to having to work.  I’m not worried about that.  I love Paulie with all of my heart and I’m going to give him every ounce of love and strength that’s within me.  I’ll make sure that his bottom is clean and his tummy is fed and that his cries are consoled.  That said, I do worry that I’ll have moments when I break down and cry to Sweetie, and feel overwhelmed.  But maybe all new mothers do!  I feel like I need to put on a strong front for Sweetie, so that he doesn’t worry– at the same time, I know that he wouldn’t have made a child with me if he weren’t aware of my reserves of inner strength.  And like I said, I’ll do anything for Paulie.

I would love to hear about other people’s survival strategies for recovering from labor and childbirth while caring for a newborn.  It seems like they sleep a lot the first few days, so that’s good.  My plan at this point is to rest up as much as I can during the two weeks that Sweetie’s home.  I’ll let him do all of the diapering and household stuff so that I can rest.  Of course, I’ll do the nursing 😉  I know that I’ll want to cuddle and hold and look at Paulie every minute that I have, but I’m going to try to balance that during the first two weeks with my own need to rest, and with Sweetie’s need to get in as much Paulie time as possible before he has to go back to work.  I worry about Sweetie too, though.  He has sleep apnea and severe diabetes, and really, really needs his sleep.  Although he won’t be the one giving birth, he’ll certainly be missing a lot of sleep being with me through labor and being with me in the hospital after Paulie’s born.  And I don’t want him to go back to all worn-out. 

I know, I worry too much.  Ken’s stepdad doesn’t work, and so he’d be available to help out, but I don’t feel comfortable nursing around any man other than Sweetie.  But I may ask a dear friend of mine if she can come help out after Sweetie goes back to work.  Even just having her there to take out the trash, load the dishwasher, and hold Paulie so that I can sleep would be great.  I trust her, and I know that she’d be really careful with Paulie.   But who knows what her work schedule will be.

I do have a lot of friends in town who I know would be happy to help out a little here and there, even if it’s just bringing by a meal.  But I’m not sure how to ask them– they’re not close friends, and they all have kids of their own.  So I’m not sure that having them come over would be relaxing 🙂  My religious community has a group called CareNet that brings meals to new moms (among other things), but I wouldn’t be comfortable having someone I don’t know hold Paulie while I sleep.  Maybe one of the moms I know from La Leche League would be able to come by for a few hours to help out.

I tend to worry a lot (in case you haven’t noticed 🙂 ).  I know that there have been many times when I’ve worried a lot about something, and that worry hasn’t come to pass (sometimes, in retrospect it seems laughable that I even worried about it).  I’m hoping that this will be one of those occasions.  I feel like I make myself sick with worry sometimes.  I just want so badly to be the great, strong mommy that Paulie needs and deserves.

As of today, I officially have 11 more weeks until Paulie is due!  Ahhh!  I can’t wait!  I often feel so excited that I’m like a kid before Christmas.  I want to curl my hands up into fists and jump up and down like a three year-old and say, “I want it to be May!  I want it to be May!”  Thankfully February flew by, and March is moving at a pretty good pace, so he’ll be here before I know it!

His car seat came in the mail not too long ago.  I’m not installing it right away because I’m afraid that someone might steal it– I’ll get it installed about a month before he’s due.  Now when I get into the car, I look into the back seat and imagine having Paulie’s car seat there, filled with my little baby boy!

Sweetie and I have a favorite saying that we like to tell Paulie.  We say, “Little boy, Great Big Joy!”  I think I’ll put that on his birth announcements 🙂

I found some inexpensive photo birth announcements at Sam’s Club.  I usually use Shutterfly for photos, but with shipping they can get expensive.  I can create and order Sam’s Club birth announcements online and then go and pick them up right in the store.  They have a cute birth announcement that has one large photo paired with little monkeys!  And they’re only $10 for 30 of them!   I can’t wait to have a precious baby boy to celebrate 🙂  He already brings so much joy into my life 🙂

I’ve been helping out at a local center that’s started a new program for autism assessment.  I’m not sure how much I can say about it on here, since of course the kids are confidential, but since I don’t have my own name on here, and of course I won’t use the kids’ names or ages, or the name of the center, than I’m *hoping* that’s protecting confidentiality enough.  I’m not used to doing this confidential stuff.  But I really need to write about what’s on my mind.

So this local center has seven different doctors that see kids from all over, to evaluate kids for autism.  Their autism assessment is such a mess that a number of different agencies have intervened, including the place where I work.  Because their current autism assessment program SUCKS so much, a group of us are doing a new assessment program at this center, working with one of the doctors who has issues (in my opinion).  Sorry to sound like a teenager as I write this, it’s just that the more I learn about what goes on at this place, the angrier I become.  It’s just not fair to the families and kids.

So there are seven different doctors at this center, and there’s no standard procedure among them for evaluating kids for autism.  Each doctor just does his/her own thing.  And they only see the kids for an hour and a half at a time!  Families travel from far away to bring their kids here, to this center which has apparently has a very good reputation (gulp).  After being on a waiting list for all that time, and after all of the heartache and worry that the parents go through, when the child finally gets to see the doctor he doesn’t even get half a day with the doctor.  I don’t doubt the doctor’s ability to properly determine if a child has autism in that amount of time (most of the time it’s obvious when you’ve been in the field long enough), and I know that the doctors are using proper assessment tools, but in that amount of time, all you can do is give the child a diagnosis.  And these parents need a whole lot more than a diagnosis– they need to know how they can best help their child.

The program that I’m working with is trying to address this problem.  We’re a brand new program, and are only on our second patient so far, but the kids we’re seeing are getting a much, much better experience than they’d get if they just sow one of the center’s doctors.  In addition to seeing the doctor for the standard hour and a half assessment, the kids in our program also see a behavior specialist, a speech specialist, and a psychologist.  Down the road we may be adding social skills assessment as well.  And an education specialist is consulting with us.  The parents actually come to the center on three different days (at least, the ones who live close enough to do so) so that we only have to work with the children for 1/2 day at a time, so that they don’t get worn out.  On the third day, the parents come alone and have a meeting with all of us, where we give them the results of the assessment **and practical recommendations on how to help their kid.**  For me, that part of the equation is huge.

I have a friend whose son has Asperger’s Syndrome.  She brought her own son to this center years ago, before our new program was in place.  When she and her son went in to see the doctor, the doctor hadn’t even looked at her son’s records yet!  Can you imagine!?  I learned that this particular doctor tells the family the diagnosis right after doing the assessment– while the child is still in the room!!??  Can you imagine!?  First of all, you don’t talk about a kid in front of that kid.  Secondly, talking to a child about his/her disability is a hugely sensitive issue, one that is best left to the parents to do in the right way, at the right time.  So in addition to dealing with their child’s diagnosis, the parent may be faced with a child’s questions before the parent is ready to answer them.  Phew.

I could go on about the things that bother me about this center.  I’m really hoping that we’ll be able to help more and more kids with this new program.  I take comfort knowing that at least the families in our program are getting a much better experience than if they were to just go through the center’s regular assessment process.  And I’ve really enjoyed working with the kids.  Since I’m not in the classroom anymore, I don’t get to play with little kids very often, and so the time I’ve gotten to spend with these kids have been a joy.  While the child’s parents talk to the behavior specialist for about 45 minutes +, I get to play with the child.  Sometimes I’ll do some informal assessment, if needed– for example, get an idea of where the child is academically– but my favorite part is just getting to play with the kids.  As has been my experience with kids who have autism, these kids are bright, sweet, and just great all around.  They have been such a pleasure to spend time with.  And in my roll as part of this program I get to interact with the parents a lot informally.  I really like that I can be there for the families during this stressful time.  My job is to let them know what’s going on, and to guide them through the process a little bit, as their child is shuffled from one specialist to the next.  I really enjoy getting to know the families, and I feel really good about getting to help them, even in this small way.  As frustrating as the situation at the center is, it helps me to know that at least these families are getting a better experience.  I’m hoping that our program will grow and grow, so that we can help many more families.  Okay, and I’ll admit, I’m hoping that it will grow large enough that they’ll need to hire someone (me!!??) to help run it.  The other people working on this program already have full-time jobs, but I’m only working part-time, and my job will end just before Paulie’s due.  I would love, love, love to work at this full time.  It means so much to me to be able to help families.  I know that what I’m doing is small in the big scheme of things, but I take comfort in being able to do something.  And even if what I do just affects a really small number of people, it’s having a big effect on their lives (and on their kids’ lives!), and that’s something.

Wow!  I can’t believe it’s March already.  Paulie will be here in no time!  (he’s due at the end of May).  This month will be busy with baby-preparation classes.  I’ve got infant/child CPR this Saturday, Prepared Childbirth two Saturdays after that, and then Breastfeeding Basics the last Saturday of the month.  I’m really looking forward to them.

Paulie’s Grandma and Grandpa came to town this past Sunday to help get his room ready!  His Grandpa put his crib together and his Grandma (Sweetie’s mom) took me out shopping for nursery stuff.  I really appreciate how wonderful Sweetie’s mom is to me.  My own Mom isn’t in my life, and so it’s been so nice to share baby-preparation stuff with my mother-in-law.  Other people may make jokes about mothers-in-law, but really, mine is wonderful (although I wish she wouldn’t try to clean my house when she comes to visit– it makes me nervous when she moves everything around.  I worry that I won’t be able to find something.)

So after Grandpa put the crib together (with no small amount of frustration), Grandma decided that we needed a bumper for the crib, and so she took me shopping.  She and I had fun getting baby stuff 🙂  In addition to a Breathable Baby bumper (the only bumper that I would allow in the crib, for safetly reasons), she decided that Paulie needed a mobile.  And a diaper stacker.  And matching wall hangings 🙂  It was so generous of her.  I would never buy things like a mobile or wall hangings for myself, since they’re not neccessary, but she was having fun being the grandma and so I had fun, too.  We did the whole room in pastel Winnie the Pooh.  The result was amazing.  Paulie’s room went from looking like a guest room with a crib in it to really looking like a baby’s room!  When Grandma and I got back from shopping she insisted on putting everything together (which I really appreciated).  So she set up the mobile, and found a place for the Pooh lamp, and she and Grandpa hung the wall  hangings, and I stuffed the diaper stacker with Fuzzi Bunz!  And the effect– wow!  It really looks like a baby’s room now!  Oh my goodness!  It’s so exciting!  I knew that having the crib set up would make Paulie’s impending arrival feel even more real, and I was right.  I look at the crib, alll set up with its sheet and bumper and everything, and I can tell that it’s just aching to have a sweet little boy in it!