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My Autistic Son has NOT Ruined my Life

Live For Today

By: Jamie Pacton

My best friend is obsessed with tragic mom blogs. She spends way too much time in her work-from-home day reading sad stories about moms whose kids have terminal diseases, rare genetic conditions, and a host of other maladies that are really quite heartbreaking.  I’m not quite sure what pulls her to these narratives— it could be a can’t-look-away-from-flaming-wreckage voyeurism, or it could be from a sense of there-but-for-the-grace-of-god-go-I reflection on her own happy, healthy kids, or it could be something else. Even she’s not sure, but she keeps reading. 

When my son—who’s only 4 days younger than her oldest son— was diagnosed with severe autism last year, she expanded her tragic-mom-blog reading to encompass autism and other delays.

Recently, she sent me a link to a heavy-heavy conversation between parents of kids with special needs. She warned me that it was “VERY heart wrenching (think Tragic Mom Blog level CUBED) and while it opens a window of perspective for me - it might flood you with emotion (good & bad)....”

And so, I went here at once:

On this page parents of kids with disabilities confess the deep, dark thoughts that literally that keep them up at night.  These parents are raw, candid, and utterly grief-stricken.  Since I’ve been there before and since I still get daily grief bursts for the life-my-son-could-have-had, I read on, and on, and on.

As I read two themes emerged:

1.     My disabled child has ruined my life

2.     I wish he/she was dead

Sheesh.

Want to know why these comments are, as my best friend warned me, “tragic mom blog CUBED”?

Simple: moms of kids with terminal diseases are desperate to have their kids pull through, to live, and to grow old.  They want life for their children.

The opposite is true of the parents with disabled kids who have written on this website.  According to these parents: the best we can hope for our disabled kids is an early death.

As blisteringly honest as these feelings might be, as much I have had these shadows cross my heart, my gut reaction here is one of anger.

Has my autistic son ruined my life?

No.

Could he if I let him?

Oh yes. 

I know it’s hard to raise an autistic child. I know it’s exhausting, physically painful (my son bites, pulls hair, and attacks us) and emotionally crushing to see him fall farther and farther behind his peers. I know that I am aging badly due to years of sleep deprivation because of my son’s insomnia. I know that I’ve gotten fatter because it’s damn difficult to make time to exercise in between being present to him, my other son, my husband, my hobbies, and my full-time jobs.  I know that my husband and I have to work a bit harder to do normal couple stuff like hang out, have sex, or even have a conversation. 

I know that grief over a child with disabilities comes in waves and never really goes away, and I don’t mean to trivialize the parents on this page’s emotions, but I want to say to them: it is possible to make it work.  Really.

My husband and I have a life and we have a child with autism.  We don’t do this because we’re loaded and can afford fleets of nannies (my husband’s in grad school and I bring home most of our money, which is quickly eaten up each month by Liam’s special diet, his therapies, and our family’s other living expenses). 

Why has our child with autism not ruined our lives? Because we say no. Because we look this different path in the eye and say, “Ok, this is our life. The future is uncertain—for all of us— but we’ll deal with it.”

In this life, the only certainty is death, right?  For us, for our kids, for everyone and everything we love.

That sucks, I know.

But, I still think it’s worse to be buried alive by despair.

Is an uncertain future a reason to kill the present? Are possible negative outcomes like homelessness or lack of social services for my future adult child reasons to wish him out of existence and then give up my 30’s to despair?

No. No. No.

I say no.

No, I will not let autism run or ruin my life. 

And I say yes.

Yes, I will make accommodations for my son and make peace with the fact that my grown-up life is different then I expected.

Yes, I will throw every ounce of energy I can into giving him excellent therapy, care, and a loving home.

Yes, I will wear myself out every single day to pay the bills, enjoy my hobbies, play with my children, and laugh more than I cry.

Yes, I will get up the next day and do it again.

Yes, I will plan trips to Paris and Thailand and hope that he can come with me.

(Yes, I will go anyway, even if it means he has to stay in respite care for week)

Yes, I will love him for himself.

Yes, I will let him know that his continued existence is not a continued disappointment, even if he can’t express to me that he understands this. 

This is my life, and he’s in it, and he has autism.  That’s the facts, but they’re not reason enough to roll over and stop trying.

So, parents of kids with disabilities, I know it’s hard, but try harder.  Get a hobby, get a babysitter, get some action.  Do something that you want to do.

And do it fast. Life is short and all of this—including your child with disabilities— will be gone before you know it.

Jamie Pacton http://www.jamiepacton.com/ Jamie Pacton is a mom, writer, and professor who lives in Milwaukee with her husband and two small sons.  Her work has appeared in The Autism and Asperger's Digest, Hyperlexia, Hopeful Parents.org, Now and Then, Parents (forthcoming), and other publications.  She grew up in East Tennessee, but moved north to study literature at Marquette.  Currently, she teaches writing for several online universities, so she can be both a stay-at-home and work-from-home mom. Visit her website at JamiePacton.com

Comments

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As I read all of the replies here, it is obvious that there are many, not just "a few" (as we are often led to believe)and this is just one blog. I have noticed for quite sometime now that the focus is always on "success stories" and the "higher functioning" and the public is, I believe, being given a distorted view of how severely autism affects some individuals and their families and the challenges they all face on a daily basis.

I just took my four year old Autistic child to the park. We were there alone for about five minutes, and then other children showed up and that was it. "No more kids anymore! No more park anymore!" And that was that... home we went. I HATE Autism, love my son, but HATE Autism, and HATE what it is done to all our lives.

All, thank you for the comments. You've given me a lot to think about and I appreciate you bringing up the fact that I'm not blameless for judging these tired, worn out, underserved parents as well.That wasn't my intent, but you're right, it's part of this bold statement of: "do this!"
I too wonder how I'll feel in 10 years. I can't tell, and it may be just as bad as these parents feel.

I wrote this essay, however, to remind myself, my husband, and all of us that we didn't choose this life, sure, but we can make some choices still. I totally feel you all on the exhaustion, frustration, and sadness. My son head-butted me in the lip about 15 minutes ago on the way to the bathroom and then pulled out a chunk of my hair. It hurts, it kills me, I cry, I try to hug him, and so it goes. In this piece, through my own intermittent despair, I just wanted to say to all of us: we can still try to do more than just exist. Hobbies for me aren't necessarily things like zumba or yoga or sailing (really, who has time for classes outside the home), but rather, they're things like maybe ignoring the piles of laundry and dishes once everyone is finally asleep, so I can read a book (that's not about autism) for 15 minutes. That's all. Just a conscious choice to do more than exist. But, I've also been in that other dark place. Where every day is something to get through. That was most of last year for me.
So, thank you, thank you for the comments. I like that we're talking to each other. This is totally not about us-vs-them, whether that be those us with autistic kids vs our friends with normal kids; or those of us in the autism community who are in a dark or light place, or whatever. I think this is about us supporting each other, talking to each other, and encouraging each other. Right? Like the Rosie the Riverter sticker (which is on my Macbook right now): We Can Do It!
Take care,
Jamie

PS- my poor maligned best friend really was trying to say: "hey, this website helps me understand the depth of emotion you were going through", but, as we say in the south, bless her heart, she's a candid soul who always takes a bold course of action...that said, I love dearly and she has supported me mightily in this last year... : )

Love the heart of this article - don't let your fear of the future rob you of the beauty you could be finding in your present. That's it. And that's how we (try to) roll too.

We cover this topic alot on my Autism Daddy Facebook page and blog. I even have a post called "12 Ways To Keep Your Marriage Strong & Sane When Autism Joins The Party" athttp://autism-daddy.blogspot.com/2011/12/12-ways-to-keep-your-marriage-strong.html?m=0

My son hasn't ruined my life, but Autism has ruined his life. Autism has changed our family in many ways both positive and negative.
What stands out over all though is that I will live in dread for the rest of my life as to what his very vulnerable life will be like when we are gone. With no money and no way to make sure he will be ok I work very hard to not think about what possible horrors might be visited on him from people who just don't give a damn...
Autism sucks.

Wonder how you will feel in a decade -
Although I have managed to stay fit even with a child with autism- after 10 years of nearly constant stress - my health has suffered - my relationship with friends and family including my husband and 2 other kids has suffered - I have stayed involved in many activities and pass on sleep and free time to keep up with everything - autism takes with it a great deal of collateral damage - no doubt - If I could choose to have a son with autism or without - I would choose without -
My son suffers each and every day.

Bravo Val! None of us should be judging each other. We all have our own heaven and hell that we are dealing with in life - some tolerance and kindness will go a long way - we have so little understanding in the real world - as an autism community we need to step up and teach what true compassion really looks like and then actually live it.

I visited the site mentioned in your article, and I cannot believe someone would pass that on the a mom of a child with autism, what is to be gained by reading that? On the other hand, we all walk in very different shoes raising our kids because they are so vastly different, and I also think your judgemental post is not so helpful either. " try harder, get a hobby, etc " There are parents out there that have kids and big 200 pound kids that have no respite, no money, no resources, no services, are are getting beat up, bit up every single day. I cannot imagine telling a parent like that to get a hobby, they are just trying to survive. The last thing we need is to be judgemental to each other. A parent might have written they can't stand it any longer after having years of raging violence with a child, but that does not mean that don't love them more than anything else. It is so incredibly sad that there are parents out there that have fallen so far down a black hole they can't get out, but I don't think telling them to try harder and get a hobby is the answer.

Jamie:

You are an exceptional and uncompromising friend to your "Debbie Downer" pal. I did peruse the tragic mom blog. Maybe it's the history major in me but it had to many shades of "Life Unworthy of Life." I am glad that parents create forums to share and vent. Being a full-time caretaker takes its toll, to be sure. As president Clinton once said, "I feel your pain."

However, I am shocked by the tone of the posts. Help is out there. Yes, it's inadequate, underfunded and comes with social stigma but it's better than wishing special needs children a speedy demise. Frankly, this is the sort of dialogue I have imagined our public health officials and governmental agencies participating in, not other parents. if anything, it illustrates that many parents are reaching a breaking point.

I understand breaking points. Every time I rant and sob and sputter, "That's it! I can't take this anymore!" my husband will give me his undivided attention, hold my hand or cry too. Then we will invariably dust ourselves off and continue on as best as we can. Autism can be a cruel taskmaster with many tricks up it's sleeve. If autism can make me feel this lost and at times hopeless, all I have to do is consider how my children must be laboring under it's cruel ministrations. That's all it takes to snap back.

Reaching a breaking point? go to the dreams/nightmares section at Age of Autism. You'll find you are not alone and not a pariah for feeling overwhelmed. You will find you are not alone in this struggle.

Even better, take some of the fury and put it to good use by joining the Canary Party's campaign to jump start Rep. Burton's hearings.

I can't even go there, if it's as negative as you describe?

MelissaD,

I hope you and your family soon see benefit from your efforts.

I feel the same recurring, draining, theme, though I'm easily tempted to share the blame with others (and certain atomic elements), but it does have an advantage that I don't have to wonder if I'm "just looking for something to blame."

As a single mom to two sons with severe autism I should be out of my mind with stress but I am more at peace and enjoying life now more than I was without them.I would not change a thing.They have taught me unconditional love and compassion.When I do get a moment to myself I know to appreciate it and enjoy it.No moments are ever wasted. A surfer friend told me early on to go with the wave of autism, not to fight against it and you won't get pummeled and frustrated, going with the flow of it-a much better ride.And my dear Liam and Aidan, what an incredible journey it has been!

Perhaps, your friend in a previous medieval life
was a professional mourner?

Wow. I have to say that this entire dialogue has blown through me twisting my stomach and piercing my heart.

First and foremost: just as I detest anyone passing judgment on my family when we are "in public," I do my best not to judge anyone else, especially a fellow parent of a child with autism.

That said, my son will be ten soon and this is definitly not the life I once imagined for my family. However, I am a better man and more involved father than I would have otherwise been. I surround myself with other parents of great strength, intelligence, determination, and character. I have come to see (and try to appreciate) the immeasurable love and selfless dedication of my wife for her family. I am as active as possible advocating for my son - and the autism community - within a system that varies from unfair, ignorant, prejudice, cruel, illadvised, biased, politically influenced, bound by financial constraints, and just about as complicated (at times intentionally) as possible. I did not chose this sleepless, stressful, worry-filled, heartbreaking (my problem, not my son's), and at times overwhelming life, but it is my life, and what I do with it is my choice.

I pray for strength, healing, and joy for all of "us."

If a parent feels that a child or anyone ruined their life, then they need to stop and think - what could they do to remedy the situation. There are always things that can be done. If you do not have answers, then find them from others (counselors, doctors, forums, groups, prayer, etc.). Never settle. If you have a problem, put in effort to solve it. The most important asset you can have is hope and faith. Believe that there are answers, and then you will find yourself on a healing journey.

Well good for you. I love my son. More than anything. But you know the recurring theme for me would have to be? Not that he has ruined my life; but that I have ruined HIS. I let him down. I contributed to his autism with my perfect first time mother “have to get to those well baby visits on schedule” mentality, the “of course we should give him antibiotics if you say so” naivety and the baby Tylenol for any and every slight malady as per the pediatrician. So I ruined his life – live every day of your life with that one. I would also be curious to know how old your son on the spectrum is. Our son is 9 ½ so we have been doing this for 7 ½ years now. And it sucks! My heart goes out to all of the parents who have been doing this 10, 15, 20 or more years. I honestly am amazed at their strength and hopeful that I won’t completely lose it by that point. I don’t know how they do it. Though I know you do it cause you have to. Who else is going to? My little guy is a “non-responder.” Every time we try something new I try not to get my hopes up for fear it will make no difference. So, as one of my mottos goes - “Expect the worst and then you are never disappointed.” Also, you are so lucky your son has a sibling. Maybe that somehow subconsciously gives you a little piece of mind for the future. You hate to have to think of your other child bearing the burden of taking care of their sibling when you are gone, but at least you have that option. We decided after our son was diagnosed not to have any more children so that we could focus on his recovery and give him 100%+ of our time and resources to make him better. Well, that hasn’t happened (yet) and he has no siblings, so that is a decision I regret. When his daddy and I are gone he will be ALONE with no one to love and look out for him, except for cousins. And I totally agree with Julie’s point: “That's the only free time I have, and I don't have any time for a hobby. I'm just too exhausted for that even if I did. Not to bitch about it, but this is the part that separates having a life from an existence. I think the difference lies in how much help you can have.” I have two wonderful parents who do all they can to help us. They pick him up from school so I can teach part time to make money for biomed. But they are getting older and sicker. I rarely bother them so we can have respite. A hockey game or dinner out a few times a year is about the only time we go out as a couple. And I feel lucky for even that. Many parents have no one, many parents have children so severely impaired that they dare not leave them with anyone else, even family. Though terribly sad, the blogger parents who feel those are their only two options deserve our empathy and our concern – not our scorn… I often think as bad as my family’s “existence” is, it is not nearly as bad as some of the stories I have seen shared on AoA and other places – and I am briefly thankful. I would never dare think less of another autism parent; you have not walked in their shoes and suffered their miseries. You have no idea how bad their “lives,” if you can call them that, might be. So everyone should cut them some slack…

my daughter has a 13 yr old non verbal, sensory challenged boy, becoming a man whom she adores. we both have fun with him. we all actually laugh together making chocolate chip cookies and getting the dough all over ourselves, taking walks, learning to ice skate.....i loved your post Jamie because it is the way to live no matter what you have to deal with..the more you look for the good, look for what you want, the more you will find and youll be helping your child do the same. My grandson has melt downs, had one in a restaurant recently, pulled his mothers hair and it was hard, but the diners around us were so supportive and loving that it became a good experience. Keep on looking and loving and you and your boy will have a good life in spite of his deficits.

Couldn't agree more with what you said, Julie: "I think the difference lies in how much help you can have."

I think it'd be much easier to be rational about a problem if you could get away from it for a certain number of hours per day...and if you hadn't been living with it for decades on end. But what about the parents who can't get away and who have no one to help them? Or who have older, stronger, possibly aggressive kids whom no one will watch simply because of safety issues? I don't know...I spent some time reading the comments on that page, and maybe I missed the ones referred to in this article (quite possible since there were so many!) but my overall impression was that these people were not evil, they were simply pushed to the brink and did not have nearly enough help. The impression I got from reading those comments was more of a sense of empathy and understanding amongst all those really struggling. Maybe something more along the lines of discussion you'd hear at a support group (if you could attend one!). I hope those parents don't now feel as though they should have kept those thoughts to themselves, because that's when I think the real problems start - the ones we end up reading about in the news.

I don't believe for a second that my child has ruined my life. However I do get in that dark place often, especially since my one source of respite has not been able to help me. That is the one thing that helps to lift my life up. I have two special needs kids, and one doesn't sleep long enough. I have to choose between an hour of "me time" or one more hour of sleep to have an official night's sleep. That's the only free time I have, and I don't have any time for a hobby. I'm just too exhausted for that even if I did. Not to bitch about it, but this is the part that separates having a life from an existence. I think the difference lies in how much help you can have. Having said all of this, I still try to lift myself up during the day and also try to see the positive in life. It's just hard right now to do so. But I will never give up. God put me here for a reason, and He wants me to heal my kids. So I have a job to do......I just keep praying for the right attitude and the rest and rejeuvenation that I need to cope with the day to day.

People who have gone through long periods of illness with a child (know from experience), have suffered from a peculiar type of trauma. My child did recover (more or less if she keeps a strict detox diet for life), but in the process of her recovery I discovered every flaw in the system. I discovered that there are no safety nets, that doctors half the time don't know what they are talking about, that schools often are only interested in students who raise their test scores, and that the institutional world in general can be nearly useless. I am not surprised that parents end up cynical. And I can understand the resorting to reading sad stories because it lessens the trauma when shared. But the parent/child relationship with a sick child is also redemptive, and a parent should never write a child off or give up hope.

I agree with other posters . Sending you this is a bit sadistic or maybe, your friend is depressed and in a weird way these stories make her feel better about her own life. Maybe she's shocked that some parents secretly think this way. Who knows?

Yes, I have waves of pain. I see what my son is missing out on. The reminders are everywhere so are those twangs of pain. I drive by a ballfield and see kids playing soccer (twang), I see a bumper sitcker that says "My kid is # 1 student at xyz elementary school" (twang). I see a group of happy boys his age skateboarding (twang). It just never ends.

Right now I am have anxiety over a classmates birthday party. I'm thirilled that my son was invited but at the same times birthday parties make me nervous. Will he get over stimulated, Will he act out?

Life with a kid on the spectrum is certainly challenging but at least we autism parents have eachother and that I take comfort in.

Jamie I love your vision. I also want you to know you will attract what your thoughts are, so by placing this positive outlook and dream for others.

We here at Morning Glory Ranch do the same and have had an incredible journey with our families and children with Autism. I would love to visit with you more, as there are alot of great things going on to improve the lives and families..

Lots of hugs and Love to you...

Kim
www.morninggloryranch.org

My "autistic child' has not ruined my life. She is my love and reason for being. But "autism' has ruined HER life and mine, although I will fight to make the best of it each and every day until I die.

Introvert

Good advice, but it takes almost a life time to make yourself not worry.

What is the difference in physcially ill children and children with autism though? None, except the medical profession ignores it this immune disease of our children.

I have been worried sick for years and years about their hearts, not to mention more ischemia stuff to the brain. And is there anyone of these docs collected 100 dollars for five minutes of not even work - to help.

p.s. I just reread the opening of your article and I see she is your best friend. I guess I should not be advising you to dump your best friend. But I do find her behavior troubling. What was her purpose in sending you that? I would ask her.

For the parent of "happy, healthy kids" to send such a discussion to the parent of a severely disabled child is sick CUBED. I don't care if she thinks you can read it dispassionately because you're a professor. I would end this friendship faster than you can say shadenfreude.

Our children with special needs make it easy for us to quickly discern who is a real friend and who is not. We need to surround ourselves with supportive people and learn to cut ties with those who bring us down or derive pleasure from our travails. (This has been a hard-won lesson for me.) Jamie, you have more compassion, more devotion, more resilience, more insight and more love of life than your "friend" has in her little finger(nail). I hope she gets some help and I hope you get some respite so you can take that trip to Paris. You deserve it.


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