Special Needs Mom?

Between my three children, we deal with ADHD, Tourette Syndrome, Obsessive Compulsive Disorder (OCD), Oppositional Defiant Disorder (ODD), Intermittent Explosive Disorder (IED), and anxiety on a daily basis.  Those are just the diagnoses, it's not factoring in all the unseen symptoms and behaviors that go along with them.  We've got a damn pot of alphabet soup over here.  

The other day I was on the phone with one of our doctors and she referred to me as a "special needs mom" and I was sort of taken by surprise.  The rest of our conversation went like this:

Me: "Well, I wouldn't say 'special needs' per se..."

Doc: "What makes you think you're not a special needs parent?"

Me: "None of my kids are actually disabled or have Down Syndrome or cancer or a muscular disease or anything.  They're just tough kids.  Challenging.  There's nothing physically wrong with any of them. Most of the time you can't even tell there's anything wrong until Gerry starts ticking or Lincoln hulks out or something.  And even then they just look weird or bad."

Doc: "Do your children have specific diagnoses?  Do they need outside assistance or  different  supports to get through a typical day?  Do you and your husband need to parent differently than a typical set of parents would because of your children's diagnoses?  The answer is yes, yes, and yes.  Your kids might not be physically disabled but they have what are called "invisible disablities" and they are special needs.  It's not a bad word, and the sooner you come to terms with it, the better an advocate you'll be for them."

So, as hesitant as I am about it, I guess I'm a special needs parent.  And I don't say that I'm hesitant because I look at special needs as a bad thing or something to be embarrassed about.   I'm hesitant because I feel like it's a group that I don't have the right to say I'm a part of.  When I think of a special needs parent, I think of someone who is strong and calm and not afraid to speak up and speak out.  I think of someone who is put together and is always prepared for whatever of their kids' needs may arise.  I think of someone who can easily lift a wheelchair and any other gear necessary in and out of the car and the house, and who walks with their head held high, ready to go to war for their kid if the need arises.  I think of someone who plows through their day, educating other people and advocating for their kid without hesitation.  Someone who won't hesitate to storm into school or a building and demand that certain supports be put into place for their child.  Someone who navigates doctor's appointments and therapies with ease, and who knows just as much (if not more) about their child's disability and needs than the actual doctor does.  I see someone who is worthy and tough and capable.   

I don't see myself as a special needs mom because I don't think I'm good enough to deserve that title.  They're superheroes and I don't know what the hell I'm doing at any given moment.  Literally, no clue.  I don't know how to respond in situations where my kids' invisible special needs become apparent, and I lose my patience far more than I should.  I get flustered trying to keep appointments and meds and symptoms/behaviors in order.  I don't know the ins and outs of the school system or who I need to contact to get which services.  I had to google the difference between an IEP and a 504 Plan.  Most of the time, I just try to get us all through the day without anyone losing a limb.  I'm not strong or capable or calm or put together.  I'm not worthy.

But.  

I could be.  I don't know what that will look like {because I will never have my shit together like those parents do}, but I'll embrace it. 

Accurate depiction of what it feels like with my kids ;-)

 

 

Happy 11th Birthday, Bailey!

I started this blog a little more than 10 years ago, shortly after Bailey was born. And here we are, celebrating her 11th birthday. 

In true tween fashion, she's developed her own style and is very particular about how she dresses.  She started middle school this year and made honor roll every quarter.  She's not the girly-girl that she used to be just a few short years ago, now preferring dark clothes, no makeup and flat shoes.  

Bailey's kept her sass, but she's developed this biting sense of humor that surprises me at times.  She is definitely her father's child.  She's sweet, she's funny, she's independent.  Headstrong, intuitive, and creative.  

I love her.

I can't wait to see the person she grows into.  If the last 11 years are any indication, we're all going to be blown away.  :-)

Update: He's Not Just "Bad"

It's been a long year.  Safe to say that it's been my worst year yet.  

Pandemic aside, we've been dealing with a lot of issues here at home.  Just when we thought we'd gotten Gerry's Tourette's and ADHD fairly under control we were hit with a diagnosis for Lincoln that's been at least 2 years in the making.  

I'm going to preface this by saying that physically he is totally fine and that our situation could be much, much worse.  I know this.  But damn if it's not been a hard, exhausting, lonely road...and it feels like it's just stretched out in front of us for miles and miles.

When I say this diagnosis was a long time coming, I'm talking YEARS.  We took him to the pediatrician when he was 3 because we were concerned that his tantrums weren't normal.  The doctor said that he was just testing boundaries and suggested that we use a bed sheet to tie him to a railing in the house when he had a tantrum.  {We have never tied him to anything and have since switched to a new pediatrician}.

After that appointment, we tried to be more strict with discipline and what we let him get away with.  There were times where he was physically carried to his room during a tantrum.  Privileges were lost.  Things were taken away from him.  None of it worked.  People commented on his behavior and hinted that lax parenting made him "bad".  As with Gerry, we dealt with {well-meaning} family members suggesting that "a smack on the butt would get him to knock it off".  For 2 years.  And he just kept getting bigger and stronger and angrier.  It got to the point within the last few months where we just didn't go anywhere.  We skipped weekly dinners with our families and public outings, and just stayed in because at that point it wasn't a matter of if he would rage, it was a matter of when.  

Lincoln was diagnosed with Intermittent Explosive Disorder (IED) and Oppositional Defiant Disorder (ODD) last week and it's been a long time coming.  In a nutshell, IED is a mental illness characterized by a lack of impulse control with rages/tantrums/anger that is completely disproportionate to whatever scenario may have triggered it.  In Lincoln's case, anything could trigger him.  Literally anything.  Something as tiny as his character getting hurt in one of his video games or us being out of his favorite iced tea will often lead to screaming, kicking, punching, someone bruised or some object broken.  We call it his "hulk outs" because in the blink of an eye he will go from my sweet, silly boy to a raging lunatic who doesn't care who he hurts or what he destroys.  It's scary and sad and he absolutely can't help it.  I've read that people who suffer from IED have physical symptoms (like racing heartbeat, a feeling of itching/burning in their skin, headaches, nausea, etc) that get worse and worse until the rage comes on, and that rage is the only thing that helps those physical symptoms to go away.  Lincoln has complained of a headache and not being able to breathe during an episode, but I don't think he even knows what a racing heart is let alone how to describe it.  Episodes last around 30-40 minutes (sometimes less on a good day) and so far have happened up to 4 times in one day. Afterward Lincoln is exhausted.  Sometimes he falls asleep right where he is on the floor; other times he just lays there with his eyes closed until the exhaustion passes.  He's always apologetic and, sometimes, embarrassed afterward.

Two years.  

Two years.  When I think about all that time wasted that we could have spent getting help, it makes me so angry.  I'm mad at the doctor who told us he was just pushing limits.  I'm mad at the people who gave us looks and made snide comments whenever he lashed out.  I'm mad at myself for knowing in my gut that it was something more than just him being a "difficult child" but letting other people make me doubt myself.  I'm mad that we spent years punishing him for something he couldn't fully control. I'm just mad.  About all of it.

The diagnosis doesn't bother me so much as the reality beyond it.  I've been researching the hell out of IED and joining support groups online and...it's not pretty.  Those with IED, particularly males, are more prone to substance abuse, self harm, suicide.  Jail, violence, poor grades, poor sleep.  I've been talking with people in one of my groups who actually have IED and they have not led easy lives.  Poor relationships, difficulty keeping a job, few friendships, divorce, alcohol abuse.  There's no cure, and I have yet to come across anything that's not negative about this. 

I can spin Gerry's Tourette Syndrome and ADHD in a positive way.  It makes him unique and he's creative and more sympathetic because of it.  His TS doesn't hurt anyone, and a lot of the time we're able to laugh about his tics.  I don't laugh about Lincoln's IED and I can't find a positive way to spin it.  It's scary and it hurts people and I don't know what the hell to do to make it better or easier on him or anyone else.  And I hate that people will see him as someone to fear or to stay away from because of it.  Because they will.  All it takes is witnessing one hulk out and you can completely forget that he's a sweet, silly, entertaining boy.  All you see is the anger and the destruction, and it's hard to see him as anything else afterward.  

So...that's where we're at.  And why we've been quiet for awhile.  

After a hulk out...worn out, red-faced from screaming, exhausted

This One's Personal

This post is a really hard one for me to write.  I've shared a lot of thoughts/feelings and family moments here over the years, but this is a really personal one for me.  

If you look over my old posts, you'll notice that I went almost a year without writing anything here.  It's not that I didn't have anything to say or anything to write about or even that I was too busy to sit down and write things out.  I was struggling big time with my mental health and I just didn't have it in me to physically, mentally, or emotionally do anything but survive.  

I'd like to blame this bout of depression on the pandemic, but the truth of the matter is that I've been dealing with it off and on since high school.  I was just really good at hiding it.  I've been medicated since high school and the few times I'd fall into the trap of depression, it only lasted a few days and then I'd "come out of it".  This last time was different and, truthfully, it scared me.  There is so much more to it  than what I’m writing here, but I just don’t have adequate words to describe what those few months were like. 

Outwardly, I was the same as always.  Smiling and saying good morning to all my daycare families every day, playing with the kids, laughing and joking, posting stupid silly stuff on Facebook, being my normal "find the silver lining" self.  I was dying on the inside and hiding it amazingly well.  So well that even my husband had no idea and to this day doesn't know how bad it was.  And it went on for months before I even realized how bad it was myself.  I'd find myself zoning out while washing the dishes, staring out the window at nothing while the water ran.  I couldn't bring myself to do simple tasks like straightening up the house or doing the laundry, and instead of doing anything about it I'd just tell Scott that we had a busy day and I just didn't have the time to do it all.  I either felt extreme sadness, overwhelm, feelings that I was a horrible wife, mother, and friend...or I felt nothing at all.  And I don't know which was worse.  It's a strange and scary thing to realize that you're not feeling like you used to.  All the things that I used to look forward to and that brought me so much joy were just things to get through. Buying the kids' Halloween costumes, Christmas shopping, all the little traditions that we've enjoyed during the holidays for so many years.   I was there but I wasn't there.  Most days, getting through the day was literally my only goal.  

I ran on autopilot--get the kids online for school, wash dishes, make lunch, change diapers.  I was doing the absolute bare minimum and it was taking everything in me to just do that.  I spent little to no quality time with my husband and blamed it on the fact that our youngest suddenly refused to sleep in his own bed during the pandemic, and would only sleep with me in my bed.  He'd be ready to go to bed around 7:30pm and I'd go up with him, most of the time leaving Scott to spend the rest of the night alone on the couch.  I'd spend a good chunk of the time staring at my phone, stuck in my own head, and falling asleep absurdly early.  I stopped doing all the things that I normally enjoy.  Reading is literally my favorite thing to do but I just couldn't.  I didn't have the attention span and I couldn't find enjoyment in it like I used to.  I couldn't write something if you were holding a gun to my head.  There was a voice in my head 24/7 telling me that I was a terrible mother, a shitty wife, a disappointment to everyone around me, and it wouldn't stop.  When I say that surviving the day was my only goal, I'm not exaggerating.  

I started drinking way more than I normally do.  I feel like that's such a cliche, but it's the truth.  As soon as my last daycare kid left, I was in the kitchen mixing a strong drink.  I used the excuse that it was a long, hard day but the truth of it is that the buzz was the only time I felt anything less than miserable.  There wasn't that voice in my head screaming at me that I was neglecting my husband, neglecting the house, neglecting the kids, being a shitty person.  Smiling and laughing came more easily.  I was a better mother when I drank.  I had more patience with the kids, I gave better advice, I listened better.  I didn't feel so bad about being such a shitty wife (and, my God, I really was a piss poor excuse for a partner) and I was able to convince myself for a little while that all married couples have these little blips when they've been together as long as we have.  I didn't feel good, but I didn't feel bad and that was okay with me.  At one point, after I'd sent Scott to the liquor store more times than any person not throwing a wild party should, he jokingly said "You good?  I feel like you have a problem."  I remember getting annoyed with him and turning it around on him.  "Why would you ask me that?  One drink is not 'having a problem'.  I thought you liked it when I was a little loose. You think I'm drinking too much, fine.  I'll never do it again",  I lied while adding a splash of cranberry juice to my Grey Goose/Malibu mix. I snapped at him and tried to turn it around and make him think he was being ridiculous and the one in the wrong when, truthfully, there was a 2 month period where I didn't go to bed sober. 

I distinctly remember the moment when I realized that maybe I needed more help.  I had just gone upstairs (to take my bra off because there's no better feeling at the end of a long day, am I right?), and Scott was playing "The Monster Game" with the kids.  I walked down the stairs and stopped just before the landing and I heard them all screaming and laughing while they played. They were having so much fun.  I can still remember the feeling of the cool wood bannister I had my hand resting on and I stood there and thought "They'll be okay.  They'll be totally fine without me".   It was a fleeting thought, one that just whooshed uncontrollably and completely unbidden through my mind and I don't want to be dramatic but it scared the ever-loving shit out of me.  I called my family doctor as soon as the office opened the next morning.  

Walking into that office and saying "I'm having a really hard time and I think I need help" was easily one of the most uncomfortable and scary things I've done in awhile (when I called to make the appointment I told the receptionist that I just needed a check-up).  I'm not one to pour my feelings out or to want to talk through my problems.  I tend to stay bottled up in my own head and rarely ask for or admit that I need help.  It was awkward and embarrassing and I kind of wondered if maybe I was blowing things out of proportion.  By the time I left that appointment, I had a prescription for new meds, orders to talk to a therapist, and another appointment scheduled in three weeks to see how everything was going.  

It took  a few different prescription changes and quite a few weeks before I started to feel better than I had.  Not good, but better than I was, and that's enough for me for now.  I still struggle with depression and self loathing and I'm pretty sure I always will, but it's nowhere near as bad as it was and I'm so glad I made that uncomfortable and awkward phone call to my doctor.  

Publishing this post is insanely uncomfortable for me, but I feel like there's this stigma surrounding mental health that makes those of us struggling with it feel embarrassed and like we need to keep quiet, and it shouldn't be that way.  We're still good parents and spouses, and we're still fully capable of being valuable and productive members of society.  We just need a little help sometimes.  Everyone does sometimes, and there's absolutely nothing wrong with it. 

My daily cocktail...no shame

March 12, 2020

The last day anything was "normal".  

I was just reading over old blog posts from right after the pandemic started and wondering if I was really that naive to think everything would be totally fine in a few weeks or if  everyone else actually believed it, too, and that we were all way off base together.

It's been more than a year since the pandemic started and nothing is back to normal yet.  We're still required to wear masks whenever we leave the house, restaurants and businesses are still not operating at 100% occupancy, and we're all just over it. Since everything began 13 months ago, every one of my children and their friends have celebrated at least one "Covid birthday" where parties were skipped in favor of quick drive-bys.  Lincoln has had two quarantine birthdays and Bailey will hit her second one in June.  It's wild.  Our kids didn't go trick or treating this Halloween and Thanksgiving and Christmas were spent with just a small portion of our family since Covid regulations allowed for only 10 people at inside gatherings. For the first time in my 36 years on this earth, I didn't celebrate the holidays with my grandparents. It's been exhausting.  And frustrating.  And sad.

Scott was back in school 4 days a week back in August, with one day virtual.  He's been back full time since January. It's a struggle for him and every single teacher out there.  They've had to learn and adapt to new virtual platforms, while still teaching their in-person students, and they've had very little support from administration.  In Scott's district (and I'm sure many others), teachers were given the option to come back to the classroom full-time right away, mid-pandemic, or risk losing their jobs.  There was no option for them to continue working virtually from home and I can't tell you how many times he was notified of a positive Covid case in his building.

 

Bailey just went back to school in person in February, after almost a year of virtual schooling. Scott and I struggled with this decision, but ultimately let her decide.  I'm actually glad that she went back.  Nothing is what it should be or what it would have been like had we not been teaching and learning in a pandemic, but she needed the social aspect of it all.  Virtual learning was really hard for her and her mental health took a huge hit.  Her grades slipped and she literally spent 22-23 hours a day holed up in her bedroom.  By choice.  Now, she still spends a lot of her time in there (but I think that's just her being a pre-teen and enjoying her own space) but she gets to go out and go to school.  She's made new friends, brought her grades up, and seems to be doing better.  

Gerry is still home.  He could have gone back in person the same time Bailey did, but I'm glad we chose to keep him home.  He struggles with wearing a mask for long periods of time and his Tourette's has gotten so much more noticeable in the last year that I'm truly not sure how this year would have gone for him.  I know it wouldn't have been easy. 

 Lincoln is set to start Kindergarten in the fall, but no one knows what that will look like.  We weren't expecting things to look like they do now when schools closed last March, so I'm not keeping any sort of hope that things will magically be back to the way they were in a few more months.  I've learned my lesson there.  

I am...I'm plugging along.  With the kids all home the past year, I haven't gotten much of a break or time to myself and it's been tough.  I think I can see a light at the end of the tunnel, but that's the best I can say about the last 13 months.  

Moderna, Pfizer, and Johnson & Johnson have all created a vaccine and everyone has been urged to get themselves vaccinated.  I don't see the vaccine as being this all-powerful weapon that will save us and allow us all to get back to normal right away like many people do, but I did get vaccinated, if only to prevent myself from unknowingly passing the virus on to someone else.  

That light at the end of the tunnel is still very far away.  So far away. But I'm looking for it and I'm hoping to see it sooner than later.