Anxiety, Mental Health, Parent Support

Sometimes it has to get worse before it gets better.

I have searched and searched and to the best of my knowledge “Quirky” is not in the mental health diagnostic manual. So I would very much like social workers, psychologists, pediatricians, psychiatrists, teachers, priests or even the garbage man to stop telling me, “Don’t worry he is fine, he is just ‘QUIRKY”. I swear I was going to rip off their lips so they could never speak again.

My mother’s intuition runs deep, and often I question it because field experts, (okay maybe the garbage man, wasn’t considered a field expert, but the rest of them were in my mind), would provide information that while technically correct, just didn’t “feel” like it was spot on for my kid.

My “gut” was only capable of telling me something was off, it didn’t allow me to know what the “off” was. Very early on in the game of parenting our pediatrician shared the one thing he learned very early in his 50 year plus practice. Listen to a mother, she knows her child.

He explained “Most often I can diagnosis solely upon what a mother reports, I then do a physical exam to confirm what I am thinking. He said, “never doubt your mothers intuition, more often than not will be right.” Thank you Dr. Kolsky, words to live by, and they probably saved our sons life.

My son was a c-section baby because he was breech, in retrospect I should have known the future was going to be dicey, he obviously wasn’t ready to meet the world and literally put his feet out to stop it. Despite his in-utero gymnastics, he was born healthy, and general was a very easy baby, this kid was totally playing me, I now know.

The mother’s intuition kicked in when he was a toddler. He went through the terrible 2’s, but he was an overachiever at it. I always felt his responses were disproportional to the event, but then again everyone told me, he is a boy, he is toddler, relax, he is normal.

Yes, he was “normal”. He couldn’t be in a bathroom when you flushed the toilet, it was too loud. I know we had the “good toilets” the ones where you could flush golf balls down and all would be okay, but seriously it wasn’t that loud. He hated tags in his clothes and god forbid you try to alter a routine he went ape shit. If we said we were going to the playground he had to go, it didn’t matter that it was the middle of a hail storm. Flexible this kids was NOT. Motherhood wasn’t feeling so great to me. Where were those cute kids on the Toys R Us commercials, they were always happy.

He was strong willed, brilliant, and impulsive. I learned very quickly that if I didn’t have an eye on him at all times, it wasn’t going end well. I realized this during a routine visit to the CVS to pick up a prescription, for his then 6 week old brother, whom I was lugging around in that car seat carrier that felt like it weighed 200 pounds.

As you may know the pharmacy is always at the back of the store. So as I am picking up my prescription, he starts to move slowly to toward the entrance door. I told him, no stay with mommy. I am not kidding when I say he stopped, looked me dead in the eye, smirked, and ran like a bat out of hell toward the front door. My eyes became huge, and big ole post pregnancy c-section mom, dragging the car seat carrier, screaming, “Stop him”, at the top of my lungs while trying to catch up with him. He passed no less than three people who did nothing but watch him run, and then me plod after him. Do you know that little bugger made it out the front door, and as soon as his passed the sliding doors, he stopped and looked at me and smiled. Yeah he smiled alright, as I dragged him by the arm back to the pharmacy, and wondered what I did to deserve this.

Oh, it is funny I know, but repeat scenarios like this every day and it was exhausting, and not very funny. Not a week passed where my phone didn’t light up with the schools phone number. I will honestly tell you, I would stare at the number, and take a deep breath, and then put on the unconcerned mom voice for whoever was calling me; you pick, the nurse, the teacher, the principal, hey even the gym teacher got in on it. This kid living on the red in the light signal behavior charts.

If I felt like total crap, I could only imagine what he was feeling being in the direct path of all these people. By second grade he had developed a reputation as the difficult child. He would never get into real trouble but “quirky” trouble. He couldn’t sit still, he couldn’t keep his mouth shut, he didn’t like to follow directions, especially if they didn’t make sense, in retrospect I see, he was me as a child.

The straw that broke the camels back involved chess of all things. Yes, chess the board game. We enrolled him in an after school chess class because he liked it and apparently was quite good at it. Unfortunately the rule was, you had to sit while you played, he couldn’t or wouldn’t. He liked to stand and watch others after he had his turn. He came home one day and announced he had been thrown out of chess, and he was to never ever ever come back.

Oh, my little drama queen. I told him of course Mr. X didn’t say that, I am sure he said something else. What 7 year old can get a story right, right? Ready for this, he didn’t. I called the chess teacher who confirmed almost verbatim what my child had reported. He said he can’t follow the rules and he is the most difficult child he has ever had, he is not permitted to return, nor enroll in any class he would teach again. OMG, talk about weighing a mother down, if I had a fainting couch I would have landed right on it. Okay, when your kid gets tossed from chess class, and that is the response, we are way, way beyond quirky. Something is wrong.

Solution oriented mom kicked into gear. I was going to find out what was going to get to the bottom of this. Unfortunately, I almost destroyed our relationship in the process. We had him evaluated, and I was convinced he was, pick any of the diagnosis’s that were popular then; ASD, OCD, Aspergers, Autism, if Leprosy was one of them I would have thought he had that as well. I didn’t care what the diagnosis was, just tell me what it is so we can start to work on helping him and us. I believe not having a diagnosis is way harder than dealing with a difficult diagnosis.

His evaluation cleared him of every, including Leprosy. The result was a kid with an extremley High IQ, with a processing issue and Adhd. I was like, winner winner chicken dinner- my kid wasn’t stupid and we had a diagnosis. I was a mom on top of the world, waiving my hands in the air, saying oh yeah, oh yeah.

Now how do we fix this shit? So much easier said than done. Over the course of the next six years, we tried counseling, executive function coaching, processing coaching, parent training (oh that one wasn’t pretty at the time, lets just say I wasn’t very open to that one), mentors, yelling, screaming, punishing, acting like the police, threatening, and being everything but empathetic, compassionate or understanding. We tried every drug made for adhd, he would be a little better but never as good and I thought he deserved to be.

The next two years from 13 to 14 were wrought with oppositional defiance, destruction to walls and doors, verbal abuse, terrible family relationships, siblings hating each other, spouses hanging on for dear life, and me just wanting to run away. We tried to avoid family gatherings, it was too hard. Family members judged us to be horrid parents. We were constantly asked, why doesn’t he want to socialize with everyone else? Why is he doing this? Why is he doing that?

It became emotionally exhausting and hurtful and we started to retreat. The anticipation of the holidays and being subjected to the inquisition was overwhelming and depressing. I preferred my messed up little life to stay in the secret confines of my dysfunctional home. To say we were all at a point of not communicating would have been an understatement, we were living like people in a boarding house with a common kitchen. There was no talking, laughing, nothing, only venomous words between whomever was bold or stupid enough to speak out loud. In mere seconds we all turned to vultures attacking the speaker.

The unofficial motto of my family became, “Keep the Peace with him at all costs.” We walked on eggshells 24/7. This sucked, and the reality was, we weren’t even at rock bottom yet.

14 thoughts on “Sometimes it has to get worse before it gets better.”

  1. Cheryl – I hardly know where to begin. First an introduction. This is Kimberly, Chad’s wife. Our son is in the Grey House currently. I believe you and Chad have had some conversations (maybe electronically). I’m not on social media (hence my using Chad’s account). For the most part, I find facebook and all the others toxic. But reading your blog and your facebook sites (almost) make me want to join in. You are funny and honest and authentic. I don’t think I’ll be increasing my electronic footprint but it’s reading your story that makes me want to. I feel a little like we are the same person. I too am shy but outgoing, strong but unsure, full of love and hurt. Your story is compelling and oh so familiar. Chad and just participated in family days a couple weeks ago. It was so draining receiving and containing everyone’s pain. Many people spoke of how they found comfort in hearing similar stories. They felt less alone. They had community. I didn’t have that experience. First, I found it so difficult to hear so many near tragic tales. I don’t want to believe there are this many families struggling as we did. No one should have to go through crisis like we did. The other very compelling thing I felt was that we were worse off in our history. Many parents shared this: “We didn’t realize anything was wrong until middle school. Then (fill in some external exacerbating life event – we moved, we got divorced, we changed schools). Our son got involved with the ‘wrong’ kids. Crisis ensued.” The trouble with our son started long ago. Almost as soon as he was born. His multiple diagnoses we doled out in elementary school. He has been kicked out or quit almost everything he’s ever tried. Including sports, camp, parties. Including school. He’s never had a friend group. We’ve never had community. Our son didn’t get off track, he was never on track. We’re not happy to have our son back, we feel we never had him in the first place. We’re hoping for a different version of him after treatment. Your story is the first I’ve encountered that sounded familiar. No summer BBQ’s for us. No family game night. Sometimes no leaving the house. I appreciate your candor in telling your story. You are brave. And vulnerable. And honest. And funny. Keep up the writing. It helps us. I’d love to meet up sometime. I think we’d have a lot to talk about. Hope all is going well with your precious and amazing boy.
    Kimberly

    Liked by 1 person

  2. Cheryl,
    I know it was not your intention to make anyone cry, but as a parent I can feel your pain. You are brave, courageous and honest, oddly most qualities few people possess. Thank you for sharing.

    Liked by 1 person

    1. Trish, never my intention. But you know a mothers love runs deeper than anything. Your life, your journey, what you did, now that is an inspiration. Please share the FB group with everyone who you thinks has a heart.

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    1. Beth, I so appreciate that fact that we can laugh at times. I have used “little shit” and a plethora of others. It is frustrating to love someone so much and not be able to help them. I hope brighter days are happening for you. Thank you for reading my blog, it makes me feel like people are listening.

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  3. We love you Cheryl and your whole entire family! That boy’s heart is so much larger than he will let anyone believe! You know how we feel about him! I’m so sorry I wasn’t able to help you during this time. I had no idea even though he was with us every day for at least a year! You have our support, prayers and love.
    The Filera’s ❤️

    Liked by 1 person

  4. Cheryl, you have just described a good part of my life since 2005. Although are paths are a bit different – as you are aware autism has taken a terrible toll on our family. And it will never be over, not until I die.

    Your words “We tried to avoid family gatherings, it was too hard. Family members would look at us, like we were horrible parents.” really resonates with me as we have been abandoned or ignored by so many friends and family. It is very hurtful to me and my children.

    As a mother having children that are different can be a front row seat to hell – you can’t walk away or avoid it – you are forced to watch their trauma – you are their mother – as painful and horrible as it is to watch it all go down – you can’t walk away – because who else will help your child- no one. No one.

    Hearing things like “god only gives you what you can handle” or “every child is special” or “every family has their problems” is just bullshit noise from people who don’t want to take the time to help – let alone even listen.

    I applaud you for not giving up – pushing to find answers and making the changes you needed to make to save your family.

    I wish you luck on your new life in Utah and look forward to your blog !

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    1. Julie, I know it. I have watched it over the years and my heart has broken for you as well. We didn’t sign up for this, nor want it, and that doesn’t mean we do not love our kids, it is just exhausting. I have no weak superlatives for you other than I hope my writing brings you a sense that you are not alone.

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  5. This is so much of what my story is w my son . I am still trying to get him to mds to find out what is going on w him. We have been through therapist , Adhd meds , wilderness program , Rtc program and still having issues .
    I will say it is somewhat better but not ideal .
    Lack of impulse control is so much of the problem
    Can not wait to hear the rest of your experience.
    I can remember us talking when you first started your journey w BRW

    Liked by 1 person

    1. Amanda, It is still a struggle, but I agree, when I look back, I can see it is much better than where we were. I will acknowledge that from a medication standpoint my child wasn’t so difficult to convince, because I created allies, as in his therapist at RTC. As long as I wasn’t the ‘Pusher” of the medications he was willing to listen. Things really didn’t get significantly better until we added anti-anxiety medication to his regime. It was the anxiety that was worse than the ADHD we found. Continue the fight, moms know best.

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    1. Emmy, I am glad you feel you are not alone, and at the same time sorry that yet another person has to have similar feelings.

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  6. I am exhausted already and you haven’t even come to the crisis. I say crisis because it is the crisis that actually brings the opportunity for real change. You sure have been tested as a mother, and now you can finally enjoy motherhood. You are courageous and a good mother, having been tested like no other!!!

    Liked by 1 person

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