People who equate truth with fact are missing the point.

Take NPS home with you

No Points For Style Button
Copy and Paste Code

The kind of person I need to be is not necessarily the person I am…

Virtually all humans will face a situation in their lives in which their needs will be deferred. Newborn babies, sick loved ones, military duty, financial pressures, work or school deadlines, and thousands of other things that I’ve probably never heard of can require us to go without.

Without what? Anything. Sleep, food, relaxation, time alone, time with loved ones (folks in the military especially suffer from this one), the opportunity to express our feelings, and anything else that we need and rely on, as human beings, to maintain our physical, emotional, and spiritual well-being.

A whole lot of the time, we do this willingly, even joyfully. When my babies were newborns, I was happy (at least in the early weeks) to be subject to my babies’ needs, to sleep in small bites and eat when I could. Hormones probably helped with that.

Short term crises are manageable. Sappy as it sounds, love gets us through. When Abbie was a year old and had pneumonia, when Jacob broke his arm and needed surgery, when Brian did his internship in California and I was alone, taking care of kids and home, for two months, I set aside my own needs for a short time and just got through.

When the issue is a mentally ill child, the crisis continues on…and on…and on. And it’s compounded (hugely) by the fact that there’s still enormous stigma and injustice surrounding mental illness. The treatment that parents of children with leukemia or congenital heart defects receive from medical professionals is vastly different from the treatment that parents of children with mental illness receive.

I want to be clear: there are many, many healthcare professionals working themselves to the bone on behalf of our children. These are devoted, knowledgeable people who really, truly give a shit about our kids and our families. I am weak at the knees with gratitude that Carter is now under the care of three of them. But they are a drop in the bucket compared with the need that exists. They swim upstream. I know that one of Carter’s psychiatrist’s major frustrations are the long waiting lists. Often, by the time she meets a new patient, she or he is much more acutely ill than when the appointment was initially made, often as long as 6 months previously. In the meantime, that child has often been inappropriately medicated by unqualified physicians. And for every excellent mental healthcare provider out there, there seem to be at least 6 who don’t care, don’t know, or both.

And sometimes we get tangled up with people (healthcare professionals, family members, friends, strangers) who refuse to believe, who think that all problems of mind are traceable to bad behavior, and in the case of children, that bad behavior must belong to the parents. This, I really must tell you, is exhausting. Brian and I are the first to admit that we have contributed to Carter’s illness. We have character flaws and weaknesses. (Can you see how wild it is, to be lauded by one group of people for being practically perfect (God must have thought very highly of you to give you such a special child!), and vilified by another? I’m neither a saint nor a demon, I can assure you!) Even the media gets in on it; next time you see a sensationalist news story about parents “drugging” their children, imagine what that feels like for us! Better yet, read this book.*

So, back to the ongoing crisis. There is no room in the situation for my feelings, my humanness. I learn that lesson often, because of course I am human and my frustration, anger, fear, pain, etc., come through to the surface sometimes. How much better, though, when I am able to maintain that calm exterior, to be firm but gentle.

In the very worst circumstances I’m usually able to do that. When Carter tried to jump out of the car on the freeway and when he told me he was going to kill himself, though every cell in my body was begging to scream, throw up, react, I firmly, calmly told him, “I will never let you hurt yourself,” and went about the business of making him safe.

And of course, unless this is the first time you’ve ever read NPS, you know that I don’t always stay firm and calm. Sometimes I throw a coffee cup, or scream and yell, or lock myself in the bedroom. And that makes things worse. Carter’s reactions to virtually everything are huge, way out of proportion. Just a little while ago, as I was writing, Carter bumped his upper lip against a tray table he was moving. A proportional reaction might have been to thump the table down and cry a bit. “Proportional” isn’t really in Carter’s repertoire; he threw the tray table, picked it up and threw it again, screamed, kicked the door, and cussed for awhile before he came to me for hugs and first aid. This time I stayed calm (being in the middle of writing about it doesn’t hurt; mindfulness is key) and his mini-rage passed in less than 15 minutes. When I react emotionally, I escalate the situation, and Carter and I are like a snowball, rolling and gathering more anger as we go.

It does strange things to a person, to live with this level of stress and this much deferment of one’s own needs, for a very long time. My memory has deteriorated at a rate that can’t possibly be explained by aging. I’m 38 years old; I don’t expect to have the memory of a 25 year old, but I feel like I have big holes in my brain! I’m way too sensitive, too easily startled, can’t sleep constantly overwhelmed (no matter what’s going on), and a host of other things. This, from my conversations with dozens of other parents of mentally ill children, both online and IRL, is very common.

And know this: Mental illness in children (I’m not talking here about mild cases of ADHD and other relatively easily treatable conditions), while not common, is not rare. There are families like mine in every community. Acutely ill children are turned away from psychiatric hospitals every day in the US. Can you imagine, if a child acutely ill with leukemia or some other physical illness, was turned away from the hospital? One phone call and six news vans would be at the hospital in minutes, exposing the hospital for its heartless practices. The medical system does not expect anyone to handle serious illnesses at home, alone, unless the illness is a mental illness.

My child is not disposable.

Consider participating in a NAMI Walks event near you. We’ll be walking in the event here in Albuquerque to help raise money and awareness.

*Seriously, read the book. Ms. Warner has a lovely, relaxed writing style, and in spite of the heavy subject matter, We’ve Got Issues is a pleasure to read. Everyone who reads it will walk away with the ability to challenge public opinion about “drugged children,” childhood mental illness, and a host of other issues that are a constant source of frustration for parents of kids with mental illness. Plus, if you want a crash course in the severe limitations of our mental health system, Ms. Warner gives a good one. You’ll be able to join us in our quiet campaign to change public opinion, one person at a time.

Related Posts Plugin for WordPress, Blogger...
If you enjoyed this post, make sure you subscribe to my RSS feed!
Like it? Share it!
Twitter Facebook Stumbleupon Email

31 comments to The kind of person I need to be is not necessarily the person I am…

  • I heard about you on twitter and while I don’t have much to offer, know that people out here on the Internet are here to listen if you need us!

  • TheNextMartha encouraged me via Twitter to check out your blog. What an amazing Mom you are! I don’t struggle with a mentally ill child, but I do understand struggling with things beyond your control. As Jill said, the internet is here to listen. {{{hugs}}}

  • I also found you via TheNextMartha on Twitter.

    You are a strong and wonderful mother, and such an amazing advocate for your son.

    I don’t know what to say, but that we’re here.

  • Your posts are awesome, keep writing them..(when you can!) and I certainly will keep reading them!I can relate to a lot of the behaviors you mentioned with your son. My son has autism and it has been very challenging mentally, and physically.
    And btw-I TOTALLY feel like I’ve lost my memory (and part of my mind!) over the past few years, as well-due to dealing with the stress.
    All the best with your son.

    ~Tammy

  • I’ve had a different, but still kid-related, level of stress. I think you are handling it brilliantly.

    It comes through SO clearly how much you love him!

  • Beth

    My daughter has Down syndrome and I can relate to some of what you are saying. It’s stressful being a parent anyway, let alone a parent of a child who has special needs.

  • Anonymous

    Another mother here with a kid w/ issues. We are still trying to put a name to the issues, but my husband and I can attest to how exhausting it is. All of it. Hope you can take a time-out for yourself occasionally.

    Paula

  • delenn13

    Heard about you from Martha. Can only give my support and prayers. Even if it’s only an hour, take some “ME” time.

  • jo

    I also found you via TheNextMartha on Twitter.
    I have had the time to read only one post, but wanted to tell you what a wonderful job you are doing. I also know how exhausting having a child with a condition that feels like it sucks the life out of you somtimes (my 5y/o has uncontrolled epilepsy).
    Keep it up, stay strong, and I hope to read more of your posts when my 3 kiddos go to bed!

    jo

  • I am the mother of a now 15 yo son via adoption at age one year who lives with bipolar. We have spent 14 years in the struggle, the fear -for and of him (I know you’ll understand that phrase). But above all, for him.

    The meds, methods and doctors we have been through are beyond counting. Once I literally saved him by the grasp of his finger tips in mine as he leapt from a balcony. Even then we were unable to find professionals who truly worked to give him the treatment he needed.

    Not until he set our house on fire, several near-deadly attacks on his two younger brothers and a knife in his hands stopped by me inches from my face did someone finally listen.

    Why his attempts to harm himself alone were not enough for others to “see” he needed more care and treatment than we could presently give at home is beyond me.

    My heart breaks every second. I cry more than I smile. And even though his being in residential treatment is currently not optional…I feel like utter dirt for placing him there. I am his mother. I am suppose to hold him in my arms. I struggle with only being able to hold him in my heart.

    Sorry. Did not mean to ramble. I just wanted you to know, you are not alone. Someone understands.

  • I just found you via Twitter, too. It’s incredible what you are doing for your son, and incredible how much you are giving of yourself. I’m off to keep reading about Carter’s story, and looking forward to following your journey.

  • Wow! Thank you all, from the bottom of my heart, for your comments. You’ve made me smile. My face may have creaked a little when I did; it’s been rough for awhile and this was a perfect pick-me-up.

  • Found you on Twitter. Keep your spirits up.

  • I don’t have any kids, so I have no idea what it’s like to have a mentally ill child, but my sister is bipolar, most of the women in my family have struggled with depression, and I have OCD (I’ve gotten off easy, as far as I’m concerned). There IS a huge stigma, and there should not be! I talk about my OCD to whoever will listen, and the rest of my family is very upfront about their struggles too. It might not be much, but you’ve got some virtual support here, and I hope that helps a little!

  • Found you via twitter as well. I don’t have anything to add but your post really made me think ~ thank you for your honesty off to read the rest of your blog.

  • From my friend TheNextMartha…

    Wow. Your strength and grace (yes, GRACE) amaze me! I can’t imagine what you’re going through on a daily basis, but through reading your posts I can feel your love and determination. You are simply amazing.

  • I too found you through Twitter. It saddens me that parents of children with mental illness and their families have such a hard time getting the help they need. Hopefully through people like you sharing your experience, more awareness will be raised and change will come.

  • Jo

    Found you by way of TheNextMartha. Now you are stuck with me…hehee.

    Thank you for giving me the gift of perspective. My daughter has ADHD and we’ve been feeling like we are losing patience with her. I cannot imagine myself in your place but I would hope to have the same amount of loving grace that you seem to have. Reading a small part of your story has helped me tremendously.

    Oh, and as for the coffee incident? I can guarantee that lots of us have been there and had less provocation. I hope you can and/or have forgiven yourself.

    I’d hug you if I could and offer to babysit if it were possible.

    Love,

    Jo

  • Hi Adrienne,

    I found you on twitter via @TheNextMartha. You are an amazing mom!

    I am the founder of The Little Bean, a women-owned boutique coffee and tea company in CA. We feel strongly about making a difference locally and globally in the lives of others. We sponsor several causes, Coffee Kids and Best Friends Animal Society which you can read more about on our website here: http://bit.ly/anGTUY

    We would love to help sponsor you through our website for the Nami Walks Event. You mentiond that you need to raise $1,000, I think we could help triple this amount.

    Please let me know if your interested 🙂

    Sincerely,
    Becky Gray
    Twitter: @The_Little_Bean

  • OMG! Yes, interested! WOW!

  • I am crying. You have amazing strength (even if sometimes you feel like you are barely holding on). I am really really moved by how quickly people are taking notice. I will be sure to continue to spread the word!!!

  • zaims

    I follow you on twitter.
    Reading your post really gave me perspective on my day and my frustrations with my kids. I am amazed at the fact that you can stay calm especially since I feel like I lose it with my kids over far less significant things like a broken glass in the kitchen where both my husband and I were screaming at our kids to not move since they had barefeet and we were panicked at them hurting themselves. I can’t imagine how I would cope if my child said that he wanted to hurt himself.
    You impress me with your reaction and your acknowledgment of your limits but also knowing your triumphs.
    I will keep you and your family in my prayers.

  • The Little Bean

    Adrienne,

    Sounds Great – Let’s get this going tonight! I’m going to email you in just a few minutes with some ideas on how we can sponsor you through our website to get those donations brewing. @TheNextMartha Rocks for spreading the word!

  • @TheNextMartha certainly did her work tongiht!
    I have been following your feed tonight too and reading the blog.
    I have a son with some mental issues as a result of extreme prematurity (25wks). He is 8yo now, ADHD, border line ED (they say…) OCD, has SID (sensory dysfuction) etc.
    Reading your part about your son saying he was going to kill himself- its the first time I have heard another parent say thier child has said that. I felt like it was my secret- something I am so scared of, my 8 yo wanting to kill himself?

    I think after the last few years of extreme emotional and physical stress my bod broke down. I have suffered from very MS-y like symtpoms for the last 8 months or so now and the only thing I can say is – you HAVE to take care of yourself too.
    I know first hand, I am unable to be a mother to my kids, when I can’t stand up without throwing up, or walk in a straight line, or suddenly lose my hearing. As far as the docs can see its all stress related.

    Its nearly impossible to de-stress, but try try try to keep up with your regular docs visits and listen to your body, cause if you don’t- your body with tell you its done. Mine did.

    Keep on going, your give me hope too moving through all the uncertain days- I will keep checking in- HUGS!

    @LilyLaneCakes via twitter

  • Like the others I was brought here by TheNextMartha and I am so glad. I recently read an article about the severe lack of pediatric specialists in the US. It’s mindboggling. I’m so sorry that you’re one of the people affected by this insane lack of providers.

    Your strength and eloquence are inspiring. I’m keeping you and my son in my thoughts. If there was any way I could come help, even by sharing a shoulder for support, I would in a heartbeat!

  • I too am here courtesy of TheNextMartha.
    Good luck in your walk.
    Godspeed.

  • It sounds like you have post-traumatic stress disorder. I have felt before like I was suffering from this as well, due to dealing with the mad daughter.

  • I also found you via twitter.

    I have no experience with this so I don’t have any advice for you, but I will say a prayer for your family.

    With many illnesses, awareness is key. Your honest posts will certainly help is spreading awareness.

  • Ditto on Twitter.

    Wishing you strength, peace, and finding ways to laugh really hard even if inappropriate.

    Ann

  • I do research on mood disorders, and we butt up against this stigma every day. It’s most telling in the adult patients we get because their health insurance doesn’t cover mental health (or they don’t have health insurance) and we are the only way for them to get treatment. The peds lab sees tons of kids whose parents just can’t find doctors to listen beyond diagnosing them with ADD.

    We are really facing two problems though. On the one hand, psychiatric drugs are over-prescribed, especially in children. This fact just complicates matters by making people think that *all* people asking for drugs don’t really need them. Then there’s the recognition that there really are people who are mentally ill, but those are chalked up to character flaws and bad parenting. It’s difficult to battle on both those fronts at the same time.

    Regarding needs… I saw a blog post a while back (I can’t remember where and I can’t seem to find it) that showed two “need” pyramids (like the food pyramid), one right side up, one upside down, with the hierarchy of needs of parent and child. The basic needs of the child out weigh the expendable leisure needs of the parent. By the same token, the basic needs of the parents MUST out weigh the expendable leisure needs of the child. I know those pyramids are distorted by mental health issues, but the basic principle still stands. All this is easy for me to say, of course, and I hate hearing myself doling out free parenting advice, so please take this with a grain of salt…

  • Allison, you’re so right! The issue is so very, very complicated – just by its nature (mental illness in kids will NEVER be an easy thing to treat), but also by bad information, bad press, doctors who over-prescribe, and mostly by lack of high-quality research about kids. The controversy rages on around us, and it’s like we have to dig through it to get what we need, YK? It’s like a wall.

    Worst is the antipsychotics. I see it on the web all the time, a pronouncement by someone that prescription of antipsychotics to children should be banned, wholesale. Ummm…and psychotic children? Talk about throwing away the baby with the bathwater!

    So yeah, the pendulum swings and it makes it so hard to find that good balance, where we have good doctors and therapists who LISTEN, who are very careful and take mental illness, meds, and children very seriously.

    Of course, it definitely doesn’t help that there aren’t nearly enough pediatric psychiatrists, so even the ones who have all the right qualities and want to do a great job, are hamstrung by huge patient loads, insurance-enforced time constraints, etc.

    Luckily, I have an appt. and have to go; otherwise I might go on for 1,000 more words! 😉

Leave a Reply

 

 

 

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

CommentLuv badge