Tuesday, July 31, 2012

The One Where I Mention My Ex

 I decided to send Little Man up north to his dad's house to spend the week, since I have a temp job where I have to be at work at 7:30 and am not home til 4:45.  I feel fine letting him stay with his dad, but its really a pain to set up anything long term with him.  His dad hasn't really gotten his life together since our divorce, still has no job and now has no car... he lives in his mother's basement and I'm honestly not sure how he pays the bills.  We have no formal child support or visitation arrangement through our courts since our divorce was pretty simple and uncontested.  I got full custody.  Child support is iffy with his lack of work, but we keep visitation to every other weekend when we can. 

While it is always hard to be away from my little guy, and I often get frustrated with his father's lack of responsibility in arranging support or visits, I think I'm one of the lucky ones.  I consider myself very fortunate to have an ex who really does adore his son, and tries very hard to be a good dad when he does spend time with him.  His positive attitude towards me and our son have enabled drop offs and pick ups to be a relatively smooth process and he has no problems interacting with Hubs or feeling like he has to prove himself as the 'real dad'.  He just goes with the flow and does not try to disrupt any of the parenting or therapies that Hubs and I work very hard on.  Of course I'm not perfect and neither is he, so occasionally he annoys the hell out of me and I'm sure I do the same to him.  But I try to remind myself that without him in our lives Hubs and I would have to pay a sitter or ask for much more help from our parents to do so many of the weekend activities we plan on our "days off". 

So this week Hubs and I going to bed early (before my Daily Show and Colbert are even on, which is awful!) and waking up even earlier.  While its nice to have a rest from the bed war, I don't think I'll be taking any more day jobs for awhile.  We get the Little Man back on Sunday after a long weekend of helping my little sister change apartments and visiting family, and things will go back to the status quo.  I'm kind of hoping that the Little Man has forgotten how to climb out of his crib when he gets home... but that might be a long shot.

Friday, July 27, 2012

The One With Shots (Needle, Not Booze)

Doctor's appointments with Little Man are not for the faint of heart.   For one thing, we live two hours away from his PCP.   So every doctor's visit is a full day worth of adventures.

So since our appointment was at 2 pm, we left the house at 11:30 to make sure we didn't hit any traffic on our way in to the city. 

We arrived at 1:30.  We were back in the office by 2:00.  The appointment didn't end until 3:45.

I know right?   It had been awhile since our last visit, I think maybe six months or so.  So after catching her up on Little Man's medical history, it was time to chat.

Can I please have a letter for our bed?  A prescription for melatonin?  A referral for ortho, optometry, and dental?  Oh and by the way, he still vomits once a month for no reason.  And he chews on everything.  Someone said to ask you about parasites?  He definitely doesn't have lead poisoning or PICA.  He still doesn't eat anything but bread.  Of course I give him vitamins and Pediasure.  I don't leave the medicine cabinets unlocked.  Everything is labelled poison but I *doubt* he's checking the labels on the floor cleaner.  I try not to let him fall off things that are high in the air.  4 vaccines?!?!   I'm not driving back up here tonight with a stool sample.  Yeah I don't think he has a parasite either.

Then I met with a social worker, attorney, and "safety officer".  Repeat stories, add details.

In the end, we left with the prescription for melatonin, a few sticks in the leg that he did not enjoy, an application for REM to possibly help us with funding the Safety Sleeper, and a page full of instructions and referrals for the next few months.  Its going to be a long grueling process, but I'm hoping to have his biggest medical issues sorted out by the wedding (and the ensuing insurance switch).    But as always, I am glad everything was heard and addressed.  Hubs had met us at the office (he'd been away on business and his flight got in early enough to meet us in the city!) and brought Little Man back home so I could run errands the rest of the day.  They didn't get home til 6:30 because of rush hour traffic.

In case you missed that, that makes *one* doctor's appointment an eight hour process. 

Yeah Little Man, we love you.

Thursday, July 26, 2012

The One Where I Am So Exhausted I Can Barely See The Keys

Exhausted.  I do not function well on less than eight hours of sleep.  Little Man has figured out how to tear down the baby gate and I found him sitting outside my door this morning around six am.  After getting over my initial shock, I had to do a quick inventory of what was missing/eaten/disturbed upstairs.  A couple of headless stuffed animals, a few chewed up books, an entire sippy cup opened and spilled on the carpet (sigh), and a broken hallway nightlight.  Nothing permanent, except the sour milk smell that hopefully some OxyClean will solve. 

I just don't know what to do at this point.  The kid doesn't need sleep, last night we got home late from dinner with my family and he didn't fall asleep til around 1:30 in the morning.  Somehow he was up again and fully functioning by six.  At least for now he's afraid to walk/crawl down the stairs so we're safe for the moment (knock on wood)... but eventually he could get downstairs and cause major chaos and/or hurt himself.

We have our 4 year well-visit with the pediatrician today... since Hubs and I are still a few months away from making it legal, Little Man has insurance through the state.  The state has covered all of his medical needs since the day he was born, which has been an incredible blessing.  I think if I added up his medical bills it would probably have put us around $250k.  Brain surgeries ain't cheap, and he's had three, in addition to a 6 week hospital stay, 3 or 4 MRIs, 2 CT scans, 2 blood transfusions, 3 ER visits, another 4 day hospital stay, numerous visits with specialists... and a partridge in a pear tree.  Anyways, what I'm trying to say is, Little Man has his well visit at a clinic.  His pediatrician changes yearly because most of them are residents who cycle in and out.  And while I HATE that there is no one there with longevity, the one hilarious thing about residents is how hopeful they are that something they do will "cure" your child.  Am I cynical?  Maybe a bit, but its almost comical how many referrals I will leave the doctor's office with when I have a newbie look at the Little Man.  Last visit the doctor referred me to this "amazing" therapy program she'd heard about in ____ County.  Turns out that it was ____ County, Colorado.  Whoops.  Only wasted about 4 or 5 hours on the phone with insurance company and therapists before we realized that we were on opposite coasts.

On the flip side of that coin though, it means that residents are super willing to try anything you suggest would help your child, and think everything that is going on with your kid is interesting news.  I say "I want therapy 5 days a week" and they say "Sure, let me write you a letter to give to your school district."  I say "Little Man has a weird rash" and they bring in every doctor in the clinic to double check that their diagnosis is right before they let you leave (that one was sort of annoying but I appreciated the effort).  Visits to the pediatrician take anywhere from 45 minutes to an hour and  a half, and they never rush you out the door (although they keep you waiting forever). 

The pros and cons of the situation usually balance out at the end of the day, and I have little reason to complain about the quality of the Little Man's healthcare.  I'm hoping today though that this visit has us leaving with a prescription for a safety bed and maybe something to help him sleep through the night.  Cross your fingers!

Wednesday, July 25, 2012

The One Where I'm Grateful

I hated being a single parent.  It sucked.  There is nothing fun about single-parenthood, and I wouldn't wish that for anyone.  I know there are people out there who love it, who embrace their single-parentness, and I know plenty of amazing single moms who rock it out.  I like to think that I was a pretty rockin' single mom myself.

But it sucked. 

I worked a minimum of 50 hours a week, and that is not including the commute, which probably added another ten hours or so.  My son's daycare was a 45 minute drive from our house, so that he could be a two minute drive from my mother's house.  I would drop him off around lunchtime and she'd pick him up on her way home from work, barely squeezing in before the daycare closed.  If it wasn't a daycare day, I'd drop him off with my ex or his mother, or my mother, or my godparents.  At one point when I was working I'd given my ex a key so that he could bring Little Man back to my place after a day with him and then wait there on my couch til I got home around midnight after my shift.  Yeah, that wasn't annoying or at all ridiculous. </end sarcasm>

I actually had a pretty good deal worked out with my boss, that I could have two consecutive days off during the week as long as I worked weekends - which no one wanted.  So usually Tuesdays and Wednesdays I would spend a few precious hours snuggling on the couch with Little Man before I ran around town doing all the errands I couldn't do during the work week. 

I hated that I wasn't getting to enjoy motherhood, or Little Man's baby years.  I would come home from work so tired and worn out that I wanted to sit on the couch and eat terrible food and watch bad tv, not parent.

I don't know what possessed me to try looking for love online.  I think I knew a couple of friends had tried it and were in great relationships, and I was super jealous.  But I was also quite sure that dating a single mom with no free time would not be ideal for any online stranger.  I'd tried dating "regularly" though, and it wasn't any better.  I was not going to find the love of my life in a bar or at work.

 Enter Hubs.  I had only been online for a week when he found my profile.  He was open, articulate, and interesting.  I loved coming home from work and seeing a message alert from him in my inbox.   We were on totally opposite schedules, he worked from 8 am til 4:30, I worked from 3:30 til midnight.  I never thought it would go anywhere because of that, and the fact that he lived about two hours away.  But the weekend of Black Friday we met up for dinner and a movie, and I've never looked back.  He was everything I always hoped for in a man.  He had his life together, and was ready for a real relationship.  And it didn't hurt that he had the most beautiful eyes I've ever seen.

And he never hesitated in stepping up to a father role in my son's life.  I would have admired that if Little Man had been typical.  But with LM's special needs, it was amazing.  On one of my earliest dates with Hubs, LM was having a vomiting episode and I had to ditch the date to take care of him.  Hubs didn't flinch.  I think that was when I knew this man was perfect for US and not just me.  We're coming up two years of being together and LM knows that Hubs is just as much his parent as I am, and loves him as unconditionally as I do.

And now I have a real partner in parenting.  I get to stay home with my son and be the mother I always wanted to be.  I get to be the advocate he needs... the playmate, the therapist, the teacher.  And I have someone who comes home every night and has my back. 

And I'm grateful.

Sunday, July 22, 2012

The One Where He Tantrums

Yesterday was my fiance's birthday celebration, so we went out to a great restaurant in Baltimore with the whole family.  He loves their crabcakes, so its worth the crazy long drive.  The Little Man only spends every other weekend with my ex, so we're always taking him out to dinner or wherever we're going and its never really a problem.  I should add "any more" to that sentence, because he was the WORST dinner companion ever as a 1-3 year old.  He hates loud noises, new people, and new places... so for awhile any time we took him out of the house he'd scream bloody murder until we went home.  Yeah that was a fun two years.  But he hasn't had any major public meltdowns in a good six months or so, so we were pretty secure in our decision to take him out with us.

Anyways, we went out to the restaurant and somehow in the car Little Man had managed to wet his pants.  A) Gross.  B) Uhhh... now what?  He's typically a very safe bet when we go out and never has diaper issues.  So the men head off to the bathroom to get all cleaned up, and there is (of course) no changing table to be seen.  I peek in the women's room and there is no changing table there either.  A kind restaurant employee lets me know its in the handicapped stall.  Lovely, as there is already a line of women waiting to use the restroom. 

So into the bathroom we go to wait our turn... and the dryers.  Oh the dryers.  In LM's defense, they are loud for me and I have no sensory issues.  One blast of the dryers and the screaming begins.  And here come the judgey looks.  I don't want to pick him up because his pants are wet, and so I am patting his head and letting him bury his face in my legs.  But the LM can't stop screaming and is freaking out at this point, so I suck it up and and try to hold him as he screams and kicks.  More judgey looks.  Little Man is four, so when you look at his little face screaming and see him kicking his momma and pulling at her hair, you might just see a bratty little guy throwing a tantrum to get what he wants.  I've said it to many people over the years - the problem when I go out with LM is that he doesn't look disabled in any way.  So for whatever reason, people think they have the right to toss me nasty looks or judgey faces at the way I parent my little guy in public.  I also don't think it helps that I look about eighteen years old, but thats another issue.  But with Little Man there is no way to convince him (unlike an actual bratty kid) that something he feels scary is not, so you either get him away from the scary or deal with the noise.  And wet pants meant dealing with the noise.

Little Man is kicking, screaming, and I am smiling politely at the old ladies in line and waiting for the one in the walker to finish up in the handicapped stall.  I've told every lady in line that we are waiting our turn for the stall, and they glance away awkwardly so as to not get scream on their nice dresses.  The little old lady in the walker edges out of the bathroom, and one of the ladies who has been giving me the rudest looks sweeps into the handicapped stall with a backwards stink eye to my son who is defiling the sacred bathroom with his screaming.  Great.  At least five more minutes of this.  At this point I am trying hard not to run out of the place screaming myself.  I wish people realized sometimes that yes, I am just as embarassed for me as you are...

We finally get our turn in the handicapped stall and Little Man is scared to lay down on the changing table.  He is fighting me tooth and nail and the screams are getting louder (if that is possible, or perhaps the echo was worse in an enclosed space).  He's pinching my arms to get me to pull him up or off the table... By the time I get him changed, my nerves are shot to hell and we exit the bathroom which has somehow miraculously cleared out.

Hubs (I know we aren't married yet, but it is my favorite nickname for the guy.  Sue me! )  is waiting outside the bathroom with a pained look on his own face.  He sticks a fruit snack in the kid's mouth and the screaming stops.  "I was about to send a little old lady in with these for you but I never thought it would take that long."

We get to the table and its like the bathroom never happened.  The server commented that he was the most well-behaved child she'd ever seen.  Which is our usual compliment when we take him out, he usually sits quietly and eats cheerios while we have long dinners.  People are baffled that he doesn't ever get antsy or cry.  Anyone that wasn't in the bathroom thought he was an angel.

I got a mimosa.  Screw the environment, hand-dryers are the work of Satan.

Thursday, July 19, 2012

The One Where We No Longer Sleep

So the reason I finally got off my butt and started posting in this blog was because I realized my Facebook was filling up with rants about how Little Man is no longer sleeping in his crib. 
Two nights ago, Little Man figured out how to jump out of his crib.  He would stretch his foot over the side, land on his toybox, and climb to the ground.  While that was impressive and interesting for me since he refuses to go up or down stairs... it meant that the room had to be rearranged. 

Solution 1:  We moved the toybox to the guest bedroom, and removed any sharp objects or toys that he could potentially wreck with his razor sharp teeth.  Which meant any toy that wasn't a stuffed animal.

Two hours later he was out of the crib.  He would just jump up on his belly and slide down the outside of the crib.  Great.  We put him back in the bed and he kept jumping out when we would leave.  Luckily (erm...) he had his monthly vomiting episode, which tuckered him out and left him too exhausted to jump out of the crib.  Unfortunately since the vomiting episodes do not phase him anymore, it meant that after finally getting him cleaned up and back to bed by around 3 am, when he showed up next to my bed at 8 am singing one of his little songs, I was not pleased. 

Solution 2:  We tighten the baby gate we had previously placed in front of the door (after the vomiting we'd sort of rested it against the door assuming that he'd sleep so late it wouldn't matter.  Silly parents.).  We also took the bottom railing of his crib off, and placed the mattress on the floor.  That gave us an additional 4 or 5 inches of railing.  We gleefully anticipated a full night of sleep and chuckled as we watched the Little Man try to lift his leg over the rail and fail. 

That lasted about 10 minutes.  He kamikaze dove out of the crib and played silently in his room.  10 escapes that night before he passed out on the floor and I stuck him back in the crib.  Score 1 for us with the baby gate so he stayed in the room, but this morning I caught him trying to jump over that too.  UGH.

So we're working on finding a Solution 3.  I have researched crib tents (baby death traps apparently), wooden special needs beds (Over $5k. Hah.)  and special needs tents (chaching!).  The Nickel Bed system would be ideal price-wise, but apparently the poles and material are flimsy and chew-through-able.  Having seen my son snap the arms off plastic toys and the wheels off of metal trains, it wouldn't last long and is still over $150 not including shipping.  I am leaning towards a middle of the road (HAH.) option called the Safety Sleeper.  At $1550, its wayyyyy more than I have to spend on a bed, but its gotten amazing reviews from parents and is even featured as a great sleep solution on the Autism Speaks website and autism magazines.  Unfortunately, it will be at the mercy of our insurance company to decide if this bed is a "need" or a "want". 

Until then, I am working hard to find a temporary solution to our sleep problem.  Right now the only thing that has been working is letting him wear himself out running around all day long, and hoping he passes out before I do.  Then I put him in bed, and hope that I hear him on the baby monitor before he gets out and eats the baby monitor.   Yes, that has happened.

The One Where I Tell You Who I Am

So I've had this blog for a long time, and haven't ever gotten around to posting in it.  I read mom blogs, autism blogs, special needs blogs, fashion blogs, recipe blogs... and I have an interest in all of these things.  It was tough trying to peg the sorts of things I wanted to write about myself, that maybe someone out there would find moderately interesting. 

I also think writing the first post was something I dreaded because I feel like you need to sum up who you are reading.  So here goes:

At 26 years old, I am a mother, fiancee', homemaker, and part-time actress.  I've also been, at various other times in my short life, a wife, restaurant manager, waitress, bartender, full-time actress, student, sorority girl, musician, drama teacher, and camp counselor.  Right now, my biggest role is advocate for my beautiful, amazing, brilliant, and weird little guy.

My son is 4 years old.  He was born perfectly healthy looking, after a long and exhausting vacuum-assisted labor.  Yuck.  That first night in the hospital he wouldn't sleep, and couldn't stop crying.  As young parents, my ex and I were given the "Awww you poor things, he's just a baby - that's what they DO!" speech.  The next morning we took pictures as he started doing little poses with his hand straight out in front of him.  And the more we tried to feed him or hold him we noticed little odd things about his breathing and behavior that just didn't feel right.  As the nurse took him off to the special nursery to get checked out one last time, she gave me a little pat on the head and assured me that it was time to get the carseat and go home - I might even want to grab a bite to eat since it wouldn't take long to get him checked out.  Just to placate the silly new parents, she'd have a doctor look at his breathing.

As I was eating my Applebees carryout, in comes the nurse, with my OB.  And they don't pat me on the head this time as they are being followed by what looks like a giant space capsule with my baby inside it, and two ambulance attendants.  They inform me that my baby has a bleed on his brain that looks very, very bad.  And that I have two minutes to say goodbye as he'll be taken to Hopkins by these strangers and I can't follow them now.  My head and my heart exploded, and I really don't remember much after that point besides them apologizing and telling me there was no way I could have known... that those cute little poses were baby seizures and the crying was from the increased pressure on his brain.

The next day we were at John Hopkins Hospital, where the Little Man started the long fight to get better.   Official diagnosis after his arrival was a Grade IV interventricular hemorrhage (IVH), which is the most severe brain bleed for babies.  Most babies who have this IVH are preemies, but our son was full-term, so they had no explanation for "Why?".  The IVH would cause hydrocephalus, and the seizures we'd seen earlier.  Before I'd even checked out of the hospital he was being prepped for a temporary shunt surgery to clear up some of the blood in his head.  That led to blood transfusions, and then eventually a permanent shunt at 6 weeks old.  At this point in my life, I was not working and my ex was a mortgage loan officer.  We could barely afford groceries, let alone a very sick little boy.  Luckily we were approved for state insurance and his surgeries were covered, but the experimental seizure meds he would have to be on for a long time were too expensive for us.  My OB came to the rescue and gave us a lifetime supply of the anti-seizure meds so that the hospital would allow us to bring home our Little Man at 6 weeks and 2 days.

Since then, life has been a whirlwind of medicines, therapies, job-hunting, and parenting.  My ex and I were never able to make it work, for lots of reasons.  We split up shortly after Little Man's first birthday.  I worked waiting tables and odd jobs to make ends meet, and ended up being promoted to the asst. manager of a restaurant chain in early 2010. 
In 2011 a doctor looked me in the eye and asked me how I would feel in ten years when my son had made no progress developmentally because I was busy working and not able to give him the help he needed.  The doctor was a jerk, but I did need to make some serious choices for my son.  I had recently met and been dating the most amazing man... and together we decided I would move in with him and leave my position at the restaurant.   It was a gut-wrenching decision to give up so much of my Independence (and income!), but I knew it was something I needed to do.  In October of 2011 we were engaged, and I've never been happier or more secure in a relationship in my life.

At four years old, Little Man's "symptoms" mirror a lot of what you would see in an autistic child.  Although he has been evaluated at many top hospitals, they were reluctant to call him autistic because he has the brain injury.  He was loosely placed in the category of PDD-NOS, because there was just no other diagnosis for him. 
His seizures at birth, which thankfully he no longer has, caused a significant muscle weakness on his right side.  He walks with a limp, and his right arm is always bent slightly for a resting position.   For several years he would wake up two or three times a week throwing up, but after a shunt-revision last September it has decreased to maybe once a month.  He started walking the day after his third birthday, and still does not talk but makes his own fun sounds.  He chews on every.thing.  Everything.  But eats nothing except chicken nuggets, grilled cheese, bread, fruit snacks, or cookies.  He flaps and bounces when he's excited.  He hates strangers.  He is obsessed with Thomas the Tank Engine and Caillou. 

And that bring us to today.  Welcome to my blog  :)