We wear so many hats, don’t we? First, we are Father. We are Mother. Sometimes we are Mother and Father together. We are Mother Warrior or Father Warrior. Most of the time we are therapist, nurse, mediator, peacemaker, cook, servant, fixer of all things great and small, teacher, duplicate of Martha Stewart, party planner, event planner, cheerleader, driver. Oh, this list could go on and on!
As parents of a different-brained child, though, we become referee on a much bigger playing field. We become psycho-physio-confusio-analyzer when checking on a new medication regiment. We become ambulance driver when beckoned to school . . . NOW. We are advocates everywhere and with everyone, including schools, outings, family, counselors, therapists, and anyone else we might come across to get our needs met and our child’s needs met. We are educators extraordinaire if we choose to share and prepare the grounds. We are detective on many, many levels.
I believe as parents of Aspies, we go through all the normal emotions, yet they seem to feel exponentially larger. It’s more. It’s intense. It’s exquisite. It’s like seeing the green flash just as the sun disappears behind the horizon, so overwhelming it doesn’t seem like it could be real.
When someone asks about Michael, here’s how I describe him at this moment in time:
When you walk into the Museum Of Modern Art (MOMA) in New York, there are pieces of art there that have moved me at a visceral level. Michael, to me, is like a painting that deserves to be hung in MOMA. He moves my entire physical and emotional state with his energy. Michael is like experiencing full grief and full joy all at the same time. It feels like he is brooding with paradox, and you’re fully in it when he’s with you. His colors are so intensely rich, they almost take your breath away. You want to step away because of the intensity, yet something keeps pulling you back in so you’re left confused and tired and exhilarated.
Now, that might seem like a far-fetched description of a child, but that is my absolute truth. I am an artist, and I have been to the MOMA in New York, and I literally started crying at several paintings. I am moved by art on many levels. That is exactly how I feel about Michael.
Posted in Mom Speaks
- Tagged art, Aspergers, beautiful, challenge, child, description, different brain, love, MOMA, parenting, son, struggle, Syndrome
I’m a single Mom. I’m an artist: acrylic on canvas and walls, ink drawings, back of my van painting, jewelry making, cake decorating, drumming. An Octopus Artist if you will. I am a crafter: paper books and scrapbooking. I am an avid reader; the self-help section is my favorite. I’ve been described as “unique” most of my life. I take that to mean that I live my truth with not much regard to what others think about me. That’s one of my favorite things about me and has been hugely challenging from the start.
I’m an alcoholic and have been dry since April 10, 2007. I did not hit rock bottom before I figured out I had a problem. I had a pretty screwed up, normal childhood. I have an exceptional former spouse, oozing with paradox in my life. I believe fully in the paradox of life, which I feel is quite prevalent in the blogs about emotion I plan on posting.
I try to be very intentional about my language. I don’t care for the term “ex” or “ex-husband”. I try not to use the words “should,” “hate,” “stupid,” or “but.” I prefer not to judge things good or bad . . . things “are” in my opinion. If I say there are good children, then I feel as if I am insinuating there are bad children somewhere out there. I haven’t found one “bad” child ever and I’ve been around my fair share of children.
I talk a lot. I laugh a lot. I cry a whole lot too. I have been on an avid heart-centered journey since about 2003, finding out about myself, my truth, and how I fit into this beautifully, tragically wonderful world. And I have an Aspie. A high-need child. He started out high-need from the day he was born. Not transferring from a car seat without screaming his head off, rendering me a wee bit insane from the second day. I turned into a Mother Warrior pretty quickly from the submissive woman I had previously been. An Aspie will do that for you and to you. When I finally felt like I had figured out which way was what, I knew I had something special that left me confused, baffled, completely lost, furious beyond belief, loyal beyond imagination, and completely in love . . . indescribable love for this child o’ mine.
I met with a couple who had just shared their diagnosis of a different-brained child with a friend of mine. I was delighted they were open to talking to me about my journey with my different-brained son. Interestingly, I found myself to be the one who cried, which I didn’t expect. There were tears from their end as well, but I found myself quite taken aback by how much emotion I continue to hold around this difficult journey with my children. I found that I moved through feeling overwhelmed and sorrowful while sitting around the kitchen table with them.
I asked, “What are your fears?” One of the things they shared was one that I find the absolute hardest about this journey—what my son has said to me in the midst of a crisis—the language of suicide and killing at such a young age (six). My family doesn’t have nearly the amount of crises that we used to because of our medication. I’m glad about that. We did, though. As they were sharing their stories of the screaming death threats from their six year old, I was taken back to the moments when my son screamed, with the energy from his soul, “You need to kill me right here and now.” This over a math problem or a Frosty from the drive-through. Or another time when he pondered how he was going to kill himself. “With a knife I think, Mommy.”
I remember not being able to hold the “suicide talk,” as would be a reasonable thing for a mother not to be able to hold. We have had two “times of suicide,” where my son would talk about and scream about dying and leaving the planet on a daily basis.
The suicide times were followed by medication switches. Both times they were “resolved,” so to speak. It’s my experience that medications can absolutely be a culprit of suicidal thoughts and tendencies. These medications are typically labeled “black box,” which I find absolutely fascinating. The black box label is a “warning” label that the medication may cause tendencies for suicide . . . . Guess what? They’re often on antidepressants! Uh, I feel duped.
So I reached out to a couple just starting their journey with a label. I’m so glad I did, and I love how I am the one who benefits from sharing my experiences. I’m profoundly grateful for my two children, who make my life richer than I truly ever imagined possible.
I’m delighted, I think. I have friends (cool, I know) and those friends know my passion for this journey of parenting my different-brained child in the very best way I know how. So when my friends meet new people with kids who are walking around with these different brains, I typically come into conversation. 🙂 And that delights me.
I remember our (cuz you know it’s not just given to the child, right?) “diagnosis” like it was yesterday. I remember being in the office reading that Assburgers was actually spelled with a P, just nobody pronounced it. I know now that I REALLY, really, ReAlLy, really and truly do not like that diagnosis “title” with the exception of using it as a baseline for discussion.
As my friend is inviting me to join her and her other friend to discuss this new diagnosis for their child (and family), I find myself feeling a bit cocky and apprehensive and excited to share what I have been through. I’m excited to be a (hopefully) loving and accepting resource for this family. It saddens me to admit that the people who fully accept my child are “less than” in the percentage column. Now, I do surround myself with loving, accepting people and family, so that percentage might look skewed. It doesn’t feel that way to me though. It feels as if I have to shelter him from people who are judgmental, even and sometimes especially, within our own biological connections.
I’m excited to meet this family, and I’m excited they’ve invited me to share my story and answer questions they may have. My best answer: love their child for all he is—unconditionally. 🙂
As I’m sitting here, really feeling crazy about my inability to communicate what life is actually like for me with this different-brained child, I realize I don’t have the words. I talk to my boyfriend about it. He says that until you see it (he had just seen a pretty awesome display of different brain) you can’t possibly grasp it.
So I did a seven-minute sprint, and this is what came from doing that writing exercise: The impact raising Michael has had on me . . .
Side note for you awesome bloggers out there . . . a seven-minute sprint is where you give yourself the beginning of a sentence, something you are pondering (i.e., the things I love about myself are, or the impact raising my son has had on me, or . . .), set a timer for seven minutes, and write like a maniac! Don’t stop, don’t check for grammar, don’t lift your pencil . . . the results are amazing because somehow the seven minutes bypasses our regular “blocked” brain and opens us up to our expanded self. OK, back to MY seven-minute sprint (yes, I did fix a few things as I typed this up).
The impact raising Michael has had on me feels like a tsunami hitting me everyday. And to explain it to others feels completely futile. Unless you are witness to what happens when we arrive home from school and then Mason says he wants to get in the door first and then the pushing and both kids are ready to explode and one of them absolutely will and usually it’s Mason because Michael will find a way to get what he wants, usually in a sneaky and deceitful fashion. So it’s usually Mason that “loses” and then I go down emotionally because yet again I have failed to protect my younger son and I have also failed to teach my older son how it really goes in life and I have failed to give him what he needs.
The impact of raising Michael might be best equated to that of someone who is on “heart attack alert.” Someone who is at risk of death due to a heart attack that quite literally could happen at any moment. The impact of raising Michael has expanded me to immeasurable infinity and has decreased and diminished me to complete nothingness all at the same time, many times over. The impact feels instant, like a surprise car crash with shattered glass. There are shards of glass stuck in my skin, and before I remove the first slivers of glass, the fresh blood still seeping out of my skin, I’m hit again. This time the impact is from the side and now my shoulder is bruised and the pain is great and I’m still wondering how to get the glass shards out. Now I know I need to allow the bruising to heal, and it’s going to take some time. While I’m figuring out how to get time and space to heal the bruise on my side and pulling glass from my skin, I get rear-ended, causing an intense case of whiplash. My neck is in so much pain I can’t turn my head and there is no way to get the glass shards out of my back now because only one hand is working well and my body can’t move. And now it’s time to leave for school.
Now that feels like a mostly accurate description of many of the days I have spent with this different brain that I simply cannot get a grasp on. It feels so hard to explain, yet there it is. And one of my instincts is to “diminish” these feelings. The reason I continue to write is so that I can hopefully communicate to others that this is real and it is one of the most difficult things to handle. I want to validate the beautiful, broken, and lovely people who are raising these children . . . it’s hard as hell and I want to name that.
And I also want to name VERY LOUDLY and VERY CLEARLY how wonderful these children are! My son is enormously delightful and engaging and absolutely fun to be with and around. It’s just that he could literally BLOW at any given moment, so . . .
Posted in Quips
- Tagged Aspergers, child, difficult, experience, frustration, love, more love, mother, parenting, sibling, Syndrome, writing tool
I have two cats and I buy those cats food. Their favorite seems to be Ocean Whitefish & Tuna. I have just purchased said food today and it’s on my kitchen counter. My son and I are in the kitchen, and he says, “Ooooh, Mom, can you believe what they put on the side of this box?”
I wait, knowing there is no need for me to inquire, because whether I want to know what he’s talking about or not, he is sure to tell me. The box reads: OCEAN WTFSH & TUNA. He covers up the OCEAN SH & TUNA to reveal WTF. “Look, they put What The Beep (high-pitched beeping sound replaces the intended fuck).” He then opens it up more to say “Look, they added a SH so that people won’t say it out loud.”
I LOVE my son, not only as a mother. He would totally be a kid on the playground I’d pick to hang out with. 🙂
Posted in Quips
- Tagged Aspergers, Brain, cat food, children, Different, funny, journey, love, parenting, struggle, Syndrome