A Knife in the Heart
I don’t talk much about this on the blog, since this is, after all, a knitting blog, and I try to stick to the subject most of the time. But some of you who know me personally know that my son, Harvey, is an Asperger’s child and has emotional and psychological issues that manifest themselves as problematic behaviors at home and at school. We’ve struggled with one thing and another since he was a very little boy.
Some days are good, and some days are bad. Today was a bad day.
Unlike a child with a different and more visible kind of disability, my child looks “normal.” But he isn’t. Because his problems show up mostly as behavioral issues (back in my school days, they called these kids “BD,” for “Behaviorally Disordered”), other people look at my husband and myself as though we must have done something wrong–we must be bad parents, because, after all, their kids don’t act like that, and by God, if they did, there would be hell to pay! “Does he have consequences at home for his misbehavior at school?” they ask. “I know when my kids get in trouble at school, I make sure they have no life when they come home!” No one really wants to face the possibility that you can do things as well as you can, be the best parents you can be, and still end up with a problem child.
Here’s what I tell people, when they stand still long enough to listen.
This is what’s it’s like:  Every so often, and you don’t know when it’s coming, someone comes up to you and stabs you in the heart with a knife. You gasp, fall to your knees, weep and sob. The knife wielder walks away. Your heart breaks and bleeds, but you live on. You go back to work and try to act as though nothing is wrong, as though your heart is not breaking, as though you are not weeping and sobbing and screaming.Â
Instead of gaining the relief of death, you live on. You get up the next morning and go about your business, knowing that the person will come back to stab you in the heart again.  Maybe today, maybe the next day. Maybe next week. It may even be two weeks. But he’ll be back. And then you’ll get to do it all over again.
Some days are good. Some days are bad.
Today was a bad day.
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November 27th, 2006 at 11:13 pm
I’m so sorry Harvey and, by extension, you and Rob had a bad day. I was listening to a program on NPR this morning about autistic kids and the autism spectrum. This is clearly a problem that a lot of people are dealing with, but that doesn’t make it any easier for individual kids or families.
There was one woman who called in to talk about her autistic son, who is now an adult. She just started to cry in the middle of her call. I really felt for her, especially given what I know about the experience of parenting a kid with these issues, most of which I know from you.
There’s no easy thing I can say–as we’ve discussed many times. I wish I had some simple answer like, “Feed him beans for dinner every night and that will fix everything,” or “Buy Ford trucks. That’s usually the answer,” but I don’t. And no one else does either.
But we keep you in our thoughts and prayers. All the time. Bad days and good.
We love you. And we know that you are the absolute best parent you can possibly be.
November 28th, 2006 at 9:54 am
My dear friend, thanks for sharing a very huge and painful part of your life. What came into my heart as I read your post is that God gave Harvey the perfect parents–exactly the ones he needed. In my former life as a family therapist, I met a lot of kids with special needs. The ones who did the best came from families who supported them despite their behaviors or the comments of others. You are doing the right thing.
I’m praying for you today, and I love what Ellen said. I’m so glad you have a family that loves and supports you on good days and bad. And your faithful readers are here too!
November 28th, 2006 at 11:50 am
Ah, Sarah, I’m so sorry to hear it was a bad day. In general I suspect most knitters are compassionate folks, so it seems like the perfect place to write out feelings that are coming up for you. In our book group last night we were deciding what we would read next, which turned out to be _The Curious Incident of the Dog in the Night Time_. It was amazing to find how many people in the room had children and grandchildren with varying degrees of autism. I know you know you’re not alone, but I also imagine days like this one can make you feel very isolated.
I hope sharing helped even a little.
November 28th, 2006 at 3:20 pm
Sarah;
I don’t know you at all, and feel a little arrogant even thinking that I do – but my heart breaks for any parent who has “bad days” – those who actually work at parenting (which there is no doubt that you do) know all the heartache and joys that come your way. I hope the added stress of the holidays doesn’t upset your son’s life too much, and know that there are parents out here who are feeling your pain.
November 28th, 2006 at 4:47 pm
Hugs for you all, Sarah.
November 28th, 2006 at 5:15 pm
My nephew has asperger’s so I know what you are going through. It’s hard enough bringing up a ‘normal’ kid.
I’m sure you are also aware that there is a big push for Federal Funding of Autisum so write your senator and congressman and ask that they support this. It’s so important that we find a cure for this.
Big hugs to you and your son and try not to dwell on the bad day.
November 28th, 2006 at 8:01 pm
My niece has a neurological problem where she cannot comprehend what is said to her, but does if it is written. We also discovered that because of it, she does not do well with other kids and finds herself a loner. It breaks my heart when kids have disabilities they have to overcome. (HUGS) to you.
=:8
November 29th, 2006 at 6:17 pm
My son, who is 10, also has Aspergers. We too have our good days and bad. Aspergers can be such a puzzling condition because the people on the high functioning part of the spectrum are so very intelligent. It’s difficult for the general population to understand why these children don’t “get it” when it comes to functioning in a neurotypical world, especially in the social realms. When my son speaks bluntly and in a monotone, they read him as rude. His tendency to break down emotionally also is misread as manipulation to get his way (he’s just attempting to process something that hasn’t gone as he planned). His mind doesn’t work that way, but people do make assumptions. But, on the bright side, we are able to get him services, and he has an amazing teacher. So, we aren’t alone in trying to give him the tools he needs to succeed in life, even if that simply means holding a job, having a friend or two and living independantly. Hold onto those good days Sarah. You are aware, compassionate and love your son. That helps on those bad days. Don’t worry about how other people perceive your parenting, just figure out who you can talk to that won’t judge you or your son. The rest just don’t get it.
November 30th, 2006 at 10:55 am
Sarah, I know I am responding to this post very late, but I wanted to tell you how much I appreciated it. My six and a half year old son has autism, and I have felt that knife in the heart, too. Sam is not as high-functioning as your Harvey is, but still I think people make assumptions about Sam and me as a parent, because you have to spend some time with him to understand what is really going on.
I wish I could offer some amazingly sage advice or similar. But know that another mom who knows from whence you speak is thinking of you and your darling boy, and sending you every possible warm thought and wish. 🙂
December 1st, 2006 at 10:36 pm
Hi friend – I’m sending you and your family a huge hug, and hoping today was a better day. I appreciate you for sharing with us…that’s a very brave and heartfelt thing to do. Please know that YOU are the best parents that Harvey could have.
We’ve often questioned our ability as parents with a son who is bi-polar….what can WE do to better the situation. Most of the time, the answer is just love him….just get through today.
The knife in the heart is very sad, and it’s okay to say that. It’s good to talk, it’s okay to be mad…then move on and know that people love you and care about you. We care about Harvey.
December 6th, 2006 at 12:36 am
Hello Sarah,
I am sorry to be posting this so late but I’ve been out of town this past week. I have also experienced the same feeling you describe as I have gone through the public school system with our son Alex. Alex is now 19 and going to college. He still has good days and bad days but we are all proud of what he has accomplished. He is more than anything a young man with a heart of gold. I’m sure Harvey will have good and bad days. But he is a great kid! THere will always be people who don’t get it. They need education. It seems that there is more and more information out there about Asperger’s. I am hopeful that this will make some of these clueless sorts a little more aware.
In the meantime hugs to you and Harvey too.
We love you.
January 14th, 2007 at 10:41 am
Dear Sarah, I just read your article/letter on your bad day. That is the understaement of the year, new & old. That was a very, very bad day & there will be others, but good ones, too. My Asperger son is now 18 & in college, but in his earliest yrs. he had a psychotic breakdown & was suicidal for the whole year in fourth grade, saying, “Why should I live if I will die anyway?” I truly was not ready for his Existential crisis so early, but these kids are such a mix of precosity & social & emotional delay it takes my breath away.
When my son was abt. 7 & EVERY day was a very bad day, I made myself a promise: that I WOULD HAVE A LIFE. That I would not turnover my soul to my disturbed son who I love most of the time. I have worked part time, see friends, go to support groups and do all I can to nurture myself. I wish that for you, Sarah. I had to learn how to do it & with practice, it is now a part of me.
My sister has a son with a very visible handicap, so people know right away he is disabled & feel sympathetic. Not so with Asperger’s, as you know. Looking normal is a mixed blessing. A down side is that because they are so smart, teachers & adults expect more fr. them than they are capable of giving. To make it worse, they misperceive seemingly basic directions/issues & adults take it personally. Like the yr. in high school the teacher said, “If you can’t control yourself, leave the rm.” to 2 kids who were acting up. My son left the rm. bec. he thought he was following directions. The teacher went beserk & accused him of thinking he was too good/advanced to be with the other kids.
I had to translate my son’s behavior & educate the teacher (which never stops). That was a very bad day, but oddly funny, as it was so absurd. Later, this teacher became good friends with my son!
As for others’ comments, you must protect yourself fr. their barbs. Some people do Not mean well (disciplin him more) & they can go to hell. I have gotten tough with emotional calluses. The people that say hurtful things don’t know what your life is like. They deserve no answers to questions that are none of their business. I try not to waste time & energy on anyone who won’t support my family emotionally. I make no apologies or excuses, but translate his behavior only when absolutely necessary.
Taking care of myself as much as possible (& it’s not always possible) is a priority for my son’s sake as well as mine. I get a massage when I can, etc. I send you love & support. Please know you are not alone.
Love, Kate
November 24th, 2007 at 3:38 am
I have a child on the spectrum, it is hard dealing with people calling him emotionally disturbed, etc. My feeling is there will never be a cure, their brains are wired differently. What parents of these kids need is more understanding from educators and others who seem to think that medication is the answer to these kid’s problems. We have tried different meds, they are limited in their usefulness. My child also has ADD and stimulants are of limited help. Anti-depressants are of limited help.
February 16th, 2008 at 3:58 pm
Thanks for sharing your story, it has touched my heart. I have a son who has aspergers. He is 14 years old, he was just diagnosed with Crohns disease. Coming home from his recent surgery he had a psychotic breakdown. Too much for him to process…these past few weeks have been a bit of a nightmare. If we can get through this, we can get through anything…
Here’s to better days…