Why am I here?

It has been a year since my last post, and I honestly don’t expect 1 person to read this but a lot has been swirling around in my head the past few months.  So, I seek solace and clarity in a space that feels removed and distant.

Sunday was Alphabet Kid’s 9 1/2 birthday and for some reason, it hit me hard.  He is no longer a little kid and he is a kid that keeps getting harder to navigate.  To say I live on egg shells and fear is an understatement. He is almost to double digits, closer each year to feeling like he is old enough to seek the independence and the spite he craves. Sometimes I joke that if he graduates high school, that will be enough. A huge win. What I’m not saying is that if he graduates high school that means he is still alive.  Or not lost.  Or every possible rabbit hole of a nightmare that most mothers imagine. He is 9 and he already thinks it is perfectly reasonable to walk home a mile each way (with 2 major intersections) between school and home, and stay home 2+ hours by himself, simply because he is a “big kid.”  And when I assure him he is not yet old enough, I get an arsenal of hate, both physical and words.  Which definitely proves my point, but he can’t see beyond his reality, which most definitely is not my reality.  Granted when I was 9, and even younger, I was a latchkey kid but as much as he and I are similar, we are vastly different not to mention that I parent a lot differently than my own mother.

I adore him more than anything, but sometimes I don’t like him, and that is a hard pill to swallow.  He can greet you with a hug and a smile, or grit his teeth, tell you to shut up or simply ignore you.  As a parent who has always tried to do everything I possibly can for him, the pile of sea salt in the wound starts to have a cause and effect.  Rationally, I know he can’t always control his mood, his lack of filter, or his extremely short fuse, but there are days when I wonder what it would be like to parent a neurotypical kid who doesn’t challenge every request, who can appreciate gifts of time, love and items, and who can get through a day without a burst of anger.

It’s exhausting.

Life would be hard enough just navigating through the day, but when you are the middle of a blended family, the weight sometimes feels too heavy to breathe.  I feel myself retreating, both physically and emotionally, in order to save myself from being torn in two.  I am not in denial that my wife and my son can’t stand each other, but that doesn’t fade or dim the love I have for both.  She is an amazing mom to our youngest, so I know she has it in her, but she can’t see the forest through the trees, or the boy through the diagnoses. Or understand, truly understand, that he can’t always control himself, nor does he even remember his words, actions or missteps after the fact.  Unconditional love is a powerful force of innate maternal instinct that she does not hold for him.

When he isn’t around, our household is smooth and calm and we parent the almost 4 year old fantastically together.  We have it in us. We can work as a team and we can support and foster a household of love.  But, a switch happens when he arrives back home, something that I look forward to, until the first episode or outburst, and the air remains toxic until he is gone again.  It’s an exhausting hamster wheel of existence where the days are long but the years are short.  Because, he is already almost 10.

In the last year, he has remained medicated 365 days a year.  His bipolar medication has been upped in dosage to account for his growth.  He has completed 3rd grade and had a pretty fantastic year.  He won a citizenship award at school his character, and was well loved by staff.  He still has an IEP, starting playing football-which he adored, and started 4th grade yesterday, another reason for my emotional crisis of growing up. He loves the damn XBox more than anything or anyone in his world, and yes, I regret that Christmas gift.  Hindsight.  It is his focus for existence and the 30 min daily, or 1 hour on non-school days is never enough.  But I think I am not alone in this parenting struggle. Right?

Fighting with the screen time limits are exhausting.  Entertaining him when he isn’t on a screen because he seems incapable of doing so himself, is exhausting.  Parenting a special needs child, while also parenting a very active 4 year old (almost), a spouse with mental health and self-esteem issues, and working an average of 50 hour work weeks outside of the home, is exhausting.  I’m on day 7 of working with not a day off and I have 3 more days to go. Then 2 days of a family wedding where both of my kids have a role.  Some days, most days, it just all feels too much.  But, I love my kids, I love my wife, I love my job and I keep putting one foot in front of the other.  Because what other option is there?

In five weeks, I get to go on an actual vacation.   A vacation where I am not visiting someone, where hotels, and amusement parks, and restaurants, and resort pools and nothing that feels familiar or homelike is involved and I am stoked.  It has been 2 years since a big vacation and my damn soul needs it.  And it isn’t a vacation with both my wife and my son, so I feel like I might be able to breathe through what would be tension.  My mom (which is a whole other story and worry) is taking Alphabet Kid and myself to Disney World for 7 days.  All the parks. A fancy resort. Dining reservations and dreams of cocktails and pure fun.  We are all excited but I haven’t traveled with my mom since I was 16, so we will see how it goes. But, the boy and I both need this. And to be honest, I couldn’t afford to give him this experience despite the 50 hour work weeks. The last 18 months have been a different kind of rollercoaster and now we get to ride an actual one (or lots) together.

*note, little girl will take a similar trip with my mom when she is older and can handle the heat, the rides, the walking, and hold the memories.*

As much as he is a pain in my butt, and a constant worry, I can’t imagine any different.  I will always do everything I can for him, provide him with resources, experiences and a safe spot to crush when he can’t function or cope.  I can’t imagine my life without him and when I do, tears instantly fill my eyes and run down my cheeks. (literally just happened)  I want, I need, him to feel safe and I just hope and pray that he makes it out on the other-side as a good person who doesn’t treat life like a punching bag.

I’ve also been thinking a lot lately about what his life would be like if I was no longer here to provide that security and unconditional love.  I have no idea why I’m facing a philosophical crisis of my existence, but I know I can’t go anywhere because of him.  Little girl would be fine, but he would not.  So, that means that I get the medical tests done that have been looming over me for a year, I drink less, I walk more, and I take care of myself better.  I am the classic case of everyone’s needs comes before my own, but not anymore.  So, I guess that is why I am here. I need to purge the feelings and the toxic thoughts, the mom guilt and the fear.  Release it from my head and my GI system.

Things can eat you from the inside.

I would prefer to take the first bite and see where it takes me.

Advertisements

August SBL

August is a super busy month around here but last weekend we crossed off TWO big items on our summer bucket list! Most importantly, Bailey turned THREE and we actually skipped the big birthday (this is a huge step in my life to simplify for sanity) and just had cake (another amazing from scratch and sculpted creation by my wife) at home with us, after a fun afternoon at a local (massive) Dinosaur Extreme Exhibit! There were bones, animatronics, full skeletons, interactives, and huge moving Dino’s. It was pretty damn cool and exactly what Bailey wanted to do for her birthday.

This next weekend, two more HUGE items are crossed off our list and we will be almost done with our summer bucket list for 2018!

Next up….a long weekend in DC with my big kid! And HAMILTON at the KENNEDY CENTER!

July SBL recap!

Summer is charging along and somehow it is already August.  We have had a summer full of work and school, but we are still trying to have some fun!  The next two weekends are jammed pack with Bailey’s birthday this weekend, and then my trip to DC next weekend with Stout, with lots of work and a summer camp, and a house guest, in between.  To say our lives are busy is an understatement.  But, the small things that have made a huge difference? Having a highschooler mow our lawn this summer, and having our house cleaned once a month helps save my sanity and deals with our reality that we don’t have time for. We have also started a chore chart for Stout in order to earn a weekly allowance, and it gives him some responsibility in terms of his screen time and choices.  (He now pays a rate to play the XBox, after a MAJOR issue of charging over $400 in game upgrades and booster purchases in damn Fortnight and Star Wars.  Video games….they aren’t the games of our childhood.)

          • Weekly local ice cream or tropical snow family dates
          • family swimming
          • Visit Science City (local Science Museum)
          • Get Stout matched with a Big Brother for the Big Brother Big Sisters program
          • Sign-up for our local milk and dairy delivery service
          • Get Stout started in 3rd grade!
          • Have Bailey transition to the 3 year old room in her Montessori school
          • See Incredibles 2–Stout saw it at school, does that count? (since Stout saw Incredibles 2 with school, we saw Jurassic World and Mamma Mia 2 instead!
          • Mommy & Stout trip to DC!—NEXT WEEKEND!!!!!
          • See HAMILTON –try not to bawl or faint
          • Bailey’s first outdoor movie (at my work event)
          • Take stout to our local zoo’s summer camp (late July when summer session is over)
          • Participate in a Title 1 summer enrichment program at the big school
          • celebrate Bailey’s 3rd Birthday!—THIS WEEKEND!!!!!
          • Apple Technology Class
          • Finish our new screened-in porch–IN PROGRESS
          • Visit the national/touring Dinosaurs Revealed Exhibit
          • Backyard water balloon fight
          • Get Stout off the training wheels
          • Potty train Bailey
          • Complete summer reading list and reports by August 15–IN PROGRESS

June: SBL recap

It feels like we haven’t done much this summer, until I check off the list, which is another reason I do a list! We have been busy with work, school and mundane life, but we will continue to make memories and small moments when we can!

  • Weekly local ice cream or tropical snow family dates–IN PROGRESS
  • family swimming
  • Visit Science City (local Science Museum)
  • Get Stout matched with a Big Brother for the Big Brother Big Sisters program
  • Sign-up for our local milk and dairy delivery service
  • Get Stout started in 3rd grade!
  • Have Bailey transition to the 3 year old room in her Montessori school
  • See Incredibles 2–Stout saw it at school, does that count?
  • Mommy & Stout trip to DC!
  • See HAMILTON –try not to bawl or faint
  • Bailey’s first outdoor movie (at my work event)
  • Take stout to our local zoo’s summer camp (late July when summer session is over)
  • Participate in a Title 1 summer enrichment program at the big school
  • celebrate Bailey’s 3rd Birthday!
  • Visit National WWI Museum
  • Finish our new screened-in porch–IN PROGRESS
  • Visit the national/touring Dinosaurs Revealed Exhibit
  • Backyard water balloon fight
  • Get Stout off the training wheels
  • Potty train Bailey
  • Complete summer reading list and reports by August 15–IN PROGRESS

Summer Bucket List

In my other blog world, I do an annual summer bucket list with some blogland friends to keep the summer real and trackable. This is the post from my main blog, which I have pretty abandoned since I started this one. 🙂

Every summer I try to make a list of things to do with my family in order to truly LIVE SUMMER.  With our work and school schedules, we don’t have a lot of free time to have unscheduled days, late nights or long weekends.  I try to have goals, and we will see how many get accomplished before Labor Day!

  • Weekly local ice cream or tropical snow family dates
  • family swimming
  • Visit Science City (local Science Museum)
  • Get Alphabet Kid matched with a Big Brother for the Big Brother Big Sisters program
  • Sign-up for our local milk and dairy delivery service
  • Get Alphabet Kid started in 3rd grade!
  • Have little sis transition to the 3 year old room in her Montessori school
  • See Incredibles 2
  • Mommy & Alphabet Kid trip to DC!
  • See HAMILTON –try not to bawl or faint
  • Little Sis’ first outdoor movie (at my work event)
  • Take Alphabet Kid to our local zoo’s summer camp (late July when summer session is over)
  • Participate in a Title 1 summer enrichment program at the big school
  • celebrate Little Sis’ 3rd Birthday!
  • Visit National WWI Museum
  • Finish our new screened-in porch
  • Visit the national/touring Dinosaurs Revealed Exhibit
  • Backyard water balloon fight
  • Get Alphabet Kid off the training wheels
  • Potty train Little Sis
  • Complete summer reading list and reports by August 15

Summer start-up and over

How has it almost been 2 months since my last post? Time flies when the shit hits the fan.

Since my last post, the big kid has received a total IEP reboot, got a med increase for both his ADHD meds and his bipolar antipsychotic, finished 2nd grade, gained about 6 more pounds, won the Principal’s Perseverance Award (yes, I cried) and has already started 3rd grade!

Yes, our school is year-round.

He completed 2nd grade last Wednesday and started 3rd grade today. For a kid who needs routine, parents who can’t afford an entire summer of expensive camps while we work (2 week-long camps at the end of summer when he has a break before the fall session cost $550. For 2 weeks) and let’s face it, we all do better with structure, year-round school is a complete blessing. Our school is so fantastic because summer is like a public school, Parks & Rec camp and French-speaking Au Pair all rolled into one! He gets daily French immersion while going swimming weekly, golfing, learning to ice skate (in 90′ temps!), learning to play basketball with some college players and a junior achievement course in finance and business. What?! I’m jealous of my kid and the opportunities he gets but I am constantly thankful for the gift of winning the school lottery. Literally. For both kids. Even though there are days he still wants to go to a English school, it is just too good of an environment and education to throw away. His IEP for 3rd grade is so generous that I doubt most regular public schools would cater to his quirks. He gets TWO desks to choose from in the back of the class–one seated for when he is calm and focused and one standing desk for when he needs to move and groove. He also gets personalized daily journals, 2x a week social intervention/skills and a team who adores him.

I am so thankful for this community that I’m being courted into serving on the PSTO. And I have started a Parent Support Group for SPED kids. If I can’t afford their expensive tickets to the annual fundraiser, or give a monthly donation for their annual giving drive, I can donate my talents and skills. And if I’m anything, I’m driven and passionate and a good advocate for the things I believe in, including our school and our small SPED department.

Between all of this, and my demanding and oh-how-I-wish-I-only-had 40 hr weeks job, I somehow managed to balance our family while my wife had a semi-nervous breakdown in April/May. Yep. It was bad. I was afraid she was going to leave. Or harm herself. Or push me to the point of no return. We came close but I’m a fighter, loyal and stubborn. She got help in an intensive outpatient program at a local hospital and yes, in 2018, my wife was in an outpatient mental health program and my young son was in an inpatient mental health program. WTAF. How does that happen? How does one survive? How do people go forward? I’ll tell you how….one foot in front of the other, processing and talking, and dealing with all of it head on. That is the only way I know how to cope and survive. She also went on medical leave, then quit her job, then found another job, and oh my god, what a rollercoaster the last 6 weeks have been. Through all of this, I’ve only missed 3 days of work this entire year (although I wanted to bury myself under my blanket and sleep for days) that were unplanned. I’m honestly glad I have a job where I can’t call in sick easily, play hookie or make up an excuse of why I’m late or leaving early.

Oh yeah, and my uncle died two weeks ago and I spent an entire day (my regular day off) with my mom at the ER. I missed 1 day of work for his funeral and the City Clerk filled in for me at work because that’s what happens when you are a staff of one. It’s a blessing, and a curse. I’m tired. But I’m good at my job and even though I don’t make nearly what I’m worth or deserve because oh, the plight of the non-profit world, I’m the “breadwinner” of the family. I don’t have a choice and oddly enough, I love going to work. It has been my saving grace and quiet space when everything else was chaotic and exploding.

So, that is where I have been since the end of April. Our plate of alphabet soup was overflowing but I’m taking a giant bite out of it on a daily basis and we are finding a new normal. Where I work, the sassy toddler continues to get smarter (and taller) at her Montessori school, the big kid has good days and bad days and my wife is working hard to manage her demons. We nearly drowned, but now we are floating into summer!

Therapy and IEPs

Our lives the last 2 months have been a complete roller coaster.  Most days, I am not sure which of my son’s personalities I will wake up, how my wife will cope with the day, and hope that I can manage my own shit.  Someone on a previous post asked about couple’s therapy and I didn’t want to forget addressing that because believe me, we have so much stuff to wade through to become healthy, as individuals, parents, couple and kids. Here is our typical week:

Monday morning: my own therapy (I work Tuesday-Saturdays)

Tuesday evening: the wife’s individual therapy

Wednesday: the family therapist, which can be any combination of a couples session, a kid session, a parenting session or an attachment session for the wife and big kid.  The practice we are going to does a whole-istic approach of dealing with each entity and each combination.

So.much.therapy.  So.many.copays.

I have hope but I know that life never gives you any guarantees, despite how hard one tries  So, we go to therapy to work on it all because we are worth it.  I was talking to a friend the other day about marriage, broken marriages and parenting.  All of it is hard.  My wife and I love each other greatly and are best friends, but we parent every differently.  That is the biggest point of strife in our lives.  She thinks I give in too easily and I think she is too hard.  We were raised differently and thus come at parenting from every different, and often times debilitating perspectives.  We fell in love with each other so we have to figure out stuff out because we won’t always be in the throws of parenting and we both want to make it to the other side.  Love is hard, parenting is harder.

Parenting a kid with serious mental health issues is a f’ing mountain.  He can do or say anything to me and my heart and soul loves him unconditionally. Biology, whether you believe it or not, is powerful. I am often loyal to a fault but you can bet on a Vegas chip that I will be loyal to my son until my last breath. It may kill me, or isolate me, but it is my truth.  He didn’t ask to be born with certain genetics, or a complicated and near-death prenatal experience.  The moment I saw my ex write down “prenatal exposure to opioids and controlled substances” my heart dropped.  I felt like a total failure, even though those drugs saved both of our lives when  I was 8 weeks pregnant and my ovary and right tube nearly ruptured. The critical time when the brain is starting to form and chemical imbalances can be proven to jolt neuro-atypical development.  Yes, the Catholic guilt is real when I think I had ONE job to do after 18 long months of medical torture to get pregnant, and my body rejected the process and put my baby in jeopardy.  Me, who has never even smoked a cigarette basically had on medical documents and psychological evaluations, a drug-baby.

Yeah, I have stuff to work through.

I also prayed (and I don’t typically pray) that my baby would not be born with autism because I have a cousin who is low-functioning, non-verbal and I know genetics come into play.  I prayed away autism and the universe said, hold my beer—we will give you bipolar, ADHD, OCD, DMDD and ODD instead. This is the first time I have admitted that and that guilt will plague my soul until I’m dead.  Guilt is rarely rational.

Life is funny like that, isn’t it.

When you hold your baby for the first time, you never think of IEPs and learning struggles.  I was a strong student, lettered in Academics, Honor Roll, AP classes, etc and just assumed my offspring would love school, read early and find ease with academics.  Wrong.  My kiddo is in 2nd grade and we are working on IEP number 2 because he is so complicated.  He originally qualified due to a reading disability that was tied into his ADHD and inability to focus long enough to read and sound out the letters, and now we are entering the realm of “other health impairment” (the legal terms for big stuff) for his bipolar diagnosis because there are so many behavioral and emotional factions that come into play as well. Alphabet Kid is being reevaluated this next month to create the new IEP plan and recommendations for 3rd grade.  Due to his “other health impairment,” he will qualify for an IEP until he graduates because SPED laws are pretty concrete and strive to provide protection for the students who qualify.

Many in the public school system find themselves at a fight and we are so lucky to have an amazing team who loves our kid.  The SPED director checks in on his regularly and his SPED instructors are so invested, they even give recommendations to admin for what teacher will best work with his needs.  And, at the last meeting, they asked which specific students work well with AK to allow him to make good choices and feel supported.  We are so damn lucky.

So, May 16 we have our final IEP meeting of the year to finalize the new documents after their upcoming testing and evaluations. Between now and then, we have a lot of therapy, he just had his monthly Psychiatrist appointment, multiple prescriptions to manage and refill and as always, we will take it all day by day.