We are a commune of inquiring, skeptical, politically centrist, capitalist, anglophile, traditionalist New England Yankee humans, humanoids, and animals with many interests beyond and above politics. Each of us has had a high-school education (or GED), but all had ADD so didn't pay attention very well, especially the dogs. Each one of us does "try my best to be just like I am," and none of us enjoys working for others, including for Maggie, from whom we receive neither a nickel nor a dime. Freedom from nags, cranks, government, do-gooders, control-freaks and idiots is all that we ask for.
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Saturday, April 21. 2007
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Don't know how that person manages...I have only one, and a very helpful school district. But ordinary life ended when he was diagnosed. No matter how much I love him.
At the risk of being dismissed as a whiner, I was reminded this week, whilst taking my one "typical" kid to see colleges (other kid has different problems) that even when one manages to get good services for an autistic kid, and even when there is a lot of love and dedication in the family, the main price tag is not that on the services the autistic kid needs. But, rather, that the whole family's life is shattered. To name just one: we were dropped by both our extended families because they were frightened by even a "high functioning" autistic kid. Another: My husband was asked to resign from his job because they feared that claims for the kid's health care needs would drive the firm's insurance rates up.
This week, my "typical" kid was ready to move in with the kind, normal family of friends of mine from grad school we visited on the college tour. Similar education, religious beliefs, values, academic interests, habits, kids headed for similar schools, all clicked, except for this: all four of their kids are normal, happy, well-adjusted. They are not on eggshells permanently wondering when a certain person will have a tantrum, have sensory overload, become psychotic and be taken away in an ambulance, whatever. I just about died of guilt watching my kid relax and smile and blossom in a normal household as I have seldom seen her in her own.
Of course, she has learned compassion,discipline, self=control, survival skills, and optimism in the face of horrible news from living in our household. But I wish she had had more fun, more peace, received more attention, etc. She is scared ever to fall in love, convinced that anyone who learns her family history will ditch her. Certainly wary of having kids.
As a parent, I love my autistic kid. My other kids love him. But our lives have been dreary, confined, and all of our perspectives permanently negatively warped by the strain of meeting his needs and fighting to get him the services that we hope will fit him for some kind of work and life contributing to his community, not permanently needing care from it. I try in small ways to encourage and challenge him, but even tho he may love "A Beautiful Mind" with its message of genius and vision and love persisting despite disability, realisticallly I know that he is no John Nash...
Now, I am sure that people who dislike my other opinions and posts will simply attribute it to my own bad attitude. All I know is that disability is usually harder on the family than on the kid with the disability. One tiny example (I am perhaps more aware of this having spent time catching up with former peers still in my field) I had to abandon my profession and find the first job I could that would provide the health insurance for the care he needs. I am grateful for the insurance, but have withered, being unable to do the kind of work I love and am good at.
I don't want or need a medal, pity, but people need to realize that past a certain point, there is not much you can do for the kid with problems, but a lot that can brighten the everyday existence of their families.
What it feels like to me, is as if one has been sentenced to permanent sentry duty. One has no intention of abandoning one's post, one takes pride in keeping others safe, on fighting sleep and sloth and selfish desires. But one longs for and appreciates tremendously those people who think to bring one a cup of coffee, warm socks, press a Bible verse into one's hand to encourage one...
One rarely gets this from one’s spouse after a few years of being special ed parents together. In my experience, caring for as severely disabled a kid as mine strengthens the bond one has with the kid, but damages the marriage. One initially tackles the diagnosis, fighting for services as a team, but eventually one gets so tired that one prioritizes. One spouse persists in denial, the other despairs. One is overprotective, the other brutal about expecting too much of the kid. The kid becomes an expert at what our family calls “splitting the staff” (when he was in a residential school for a couple of years, the kids picked up a rudimentary vocabulary of psych concepts from overhearing staff that make them sound like lecturers on borderline personality at times…)
A lot of parallel parenting goes on. The kids get loved and looked after, and the couple becomes two separate entities again, endlessly coordinating, arguing, but emotionally diverging further and further. Each so desperately in need of care and each so burned out. You can't follow any of the typical advice to couples on keeping your love alive because you can't leave the kid with anyone. Respite is a mirage. Not to mention, what each parent most wants is solitude not time with a needy adult who will demand the same care the kid gets 24/7. A therapist and pets help one keep going, but an ordinary spouse simply criticizes and demands and is disappointed in one.
The other thing that happens is that even when you belong to a loving church that supports and prays for your kid and you, after a time you become ashamed of always being the recipient, so you starting faking optimism and energy and good cheer there. One no longer wants to be a burden. One signs up to do lots of work, to “give back”, and one knows one owes it to an institution that has so loved one. But shame and guilt and obligation do not a cheerful Christian make. I have tended to drop out of all social and church activities I used to be involved in beyond a fairly heavy load of volunteering regularly (I used to be an extravert) because it is too hard pretending one is not depressed. All the therapy in the world cannot make one good company or happy if one’s particular temperament cannot surmount this particular challenge.
I admire and am in awe of parents of autistic kids who remain the same energetic, hopeful, creative people they were before. But I can only appear cheerful for short spaces of time (as, for example, when I try to help and comfort parents of newly diagnosed kids)
It was so hard to leave my old friends today. I hsd not seen them in 17 years, that's what caring for our kid has done to our social life and relationships. I drove home dreading the cleaning of the frat house that I knew awaited us at home (kid and dad with a softer form of the disorder would not have cleaned up during the whole time we females were on the college tour).
And then God's grace brightening my gloom, a shaft of light thru a shodowed courtyarL kid running out to greet us, boa constrictor hug, and husband telling us that my son has been asking when we would return every fifteen minutes all day. It could be so much worse.
I don't deserve his love. He has one kind of disability. But I am crippled in my own way: caught up in worldly standards of how a successful, typical kid reflects well on my mothering, caught up in wanting others to admire my child as I admire theirs. Such nonsense.
Jesus asked his disciples in John’s gospel, Do you love me? Yes, Lord, of course we do. Then feed my sheep. Love each other. I'm crippled, clumsy at love. My kid soars by comparison... He brings me lemonade after my long drive home, starts to grill me hamburgers because he knows I am tired. Husband squawks in horror lest kid burn himself, I go over to supervise for the hundredth time. But the impulse to care, to feed that he shows…surely there is hope for him? If he can love, he is able to do more than I can some days….My God makes weal and makes woe but He is with us. There is so much more to all of this than our limited, sinful, broken selves…
Retriever, your story sounds so much like my life. I have two boys diagnosed, both very different from each other, and a girl who so far seems typical. Hubby is on the spectrum too but not officially diagnosed. I swear it is only by the grace of God that I haven't had some kind of mental break down yet and I've probably come closer than I care to think.
I make an effort not to let the weight of the burden I carry as a mother of autistic children crush me. I'm stubborn enough that I might succeed. We'll see.
R., I am so far beneath you and your strength, all I might meekly utter would be platitude. You deserve more. You rend my heart. Please always remind us of 'real' life. Apologies if my writing seems to make trite, I do not mean it too.
Once you have graduated from a Jesuit University with you Bachelor's Degree, you are free to come back and monitor any class for a small fee. One day in a humanities class I was attending, an elder "Student/;monitor", who had been sittinn in on the class for weeks, was asked to give his thoughts about love. His whispered response has echoed in my heart daily ever since. That older man said this: "I was there when my son was born with Downs Syndrome. I did NOT WANT to be there that day. And, I was there 18 years later when we buried him. I did NOT WANT to be there that day either."
I have never forgotten those words and that message.
I send you my best--not knowing how it is to walk in your shoes.
Lm and anonymous, appreciated your kind remarks. Anon, the baby before our autistic son died in mid pregnancy after we had refused amnio because we are against abortion, and were afraid amnio mightinduce mIscarriage.. When the baby died, we could not imagine how anyone could ever abort a child so perfectly formed and precious. My son is a gift and we thank God for him, despite our weak moments of discouragemen t and fatigue.
Samantha, I was glad to hear some of your experience. Prayed for you and your kids this am. Am sure you can understand the conflicting longings to share what it is really like, versus not wanting to prejudice outsiders against our kids. For example, people have asked why I do not write about our family's experience. Mostly, I do not because I want to preserve my chldren,s privacy. But also, I am fed up w the poll
yannaishness and outright lying in much of the autism. community about our kids' at- times atrocious behavior. If I were to write truthfully about my darling boy, people would look at
him funny and avoid him, and the millionaire socialites who run the autism support groups here would excommunicate me. Nobody is ever honest, because everyone is afraid of their kid being further isolated.
In our family we often paraphrase that idea that to the policeman the world is full of two kinds of people, perpetrators and those not yet caught.. We joke
that the world is divided into those diagnosed and those not yet diagnosed. The latter are afraid that the former are contagious!
Our familyl's situation is complicated by mood disorders over generations.. My children amuse themselves clinically diagnosing t
he beastly relatives wno think my kids, difficulties are the result of our parenting. Actually, both sides of the family are fuil of accomplished but eccentric and or tormented people w similar problems.
I was advised not to have ch
ildren, but did so anyway, believing that God would guide us.
We are all screwed up but are all pillars of the church, hard workers, writers, professors,ministers, ceos'who give to our communities. God calls all of us, cracked as we may be, because He cares more that we pursue holiness
than success. As my son exclaims to atheist peers "I believe in God because He healed me! You should have seen how wacko I was before then...". He does heal, even when there is no final cure just now.. Every human being is broken and in need of God. I would rather have my autistic kid who knows and loves God than a "healthy"one who does not know God...
Sounds like we could almost be related. I have read (and I very firmly believe it) that autism occurs in families and where there is one diagnosed individual there are always individuals who have lots of autistic traits.
My sisters occasionally call me up to tell about how they see themselves in the descriptions of certain autistic behaviours. Mean while my in-laws seem to be totally clueless to the implications of the genetic nature of autism. I think most of them are on the spectrum too. I tend to not put my side of the family on the spectrum because they admit that they could be under the right conditions.
I try to temper what I write about my kids by keeping in mind how they might feel about what I share about them when they are adults. Otherwise oh the stories I could tell!
I'm not real comfortable with the big name autism groups or most of the online autism communities either. I feel that while autism is a big part of my life I can't make it the center of my life or the defining component of my identity either online or in real life.
Lastly, but not least, thank you for your prayers. I'll give you (and God) the credit for the smaller diaper incident I had to clean up today.
r., one thing I have too add. A few threads ago I smart mouthed about courage and defining moments. Trying too make a point that no one knows until after, whether one has it or not. I refrained from children, with the fear that I did not 'have it' for that responsibility. Many crippled genes on my side, I overcame most, but was fearful of regression. I admire your steadfastness and courage, and wish the best for you and your boy.
Thanks, Luther. The encouragement means a lot. Fortunately, even tho our kids have inherited family weaknesses and to have them worse than previous generations, there are a few strengths that they seem to have in far greater abundance than us parents. As if to balance the Achilles heel.
And humor really helps. We are particularly fond of the Addams family...Can really relate...
Ha, the Addams. Only saw a few of the reruns. Was otherwise engaged. But the few I saw seemed...normal :-)
No particular feminist here, always an individualist, but it is the strength of such as you and Samantha that allows we men to do as we must. Courage is courage, no matter how it is manifested. Though our particular circumstances may seem at variance, it is an ancient cleaving that appears too work. At least so far.
Retriever, you carry a terrible burden which may be more satisfying in the end than those trivial pursuits and self-manufactured probs the rest of us indulge. Or not, but grace will be. And yours shows.
My neighbor just told me her four year-old has been diagnosed somewhere on the spectrum-- maybe Asperger’s or more severe, they’re not sure. She’s installing a home gym to help w/ his physical need to spin and move “big” in order to collect himself. The boy isn’t terribly verbal, but I can overhear his father patiently but a little tired saying in the face of the child’s whining and tantrums that there are choices- to go in now or to go in two minutes later, etc. He’s been coached and is trying hard. She expressed a gratitude that there are so many support groups these days, in recognition that in times past mothers really suffered alone.
This couple is young, beautiful and professionally successful, but they have the fortitude to encounter this unexpected problem with love and strength. So far. The long-term is the all. She’s fortunate in that her husband has no autistic tendencies and will share in the work. Still, time will tell, as the telling stands time still. Being confronted with others’ real adversity clues the rest of us as to the perversity of our self-involved drama/ moments. Imparts some needed clarity.
Char, they are fortunate to have you as a neighboring friend. Autistic kids can grow:extremely fond of familiar people and are greatly helped by caring, consistent adults they are frequently near. As are all kids, of course. But a neighbor a child can be trained to greet and make polite conversation with regularly is more valuable than any formal social skills training [tho all such therapy helps]. To the extent that you can remind the parents that you care, that you see their chid's progress, you will reassure their great fear that the world will reject or scapegoat him.
Given the huge stress that a child's autism places on a marriage, you might feel moved to look after the kid so they could go out together. But many parents are afraid to leave an autistic kid with anyone [often w good reason] so don't take it personally if they initially decline..
The best thing anyone ever did for me in the early years was to get to know my kid over weeks w me, then watch him and shadow him in as much Sunday school as he could take while I got to go to church. What a gift! He still loves this woman, and is now able to go to Sunday school on his own.
Depending on the closeness of the friendship, you might be able to help your neighbor pick up a playroom and be greatly appreciated.Then again, some women who are naturally better housekeepers than me manage to keep a spotless house when housebound with their kid. But autistic kids can make an incredible mess, and I know that I have not invited anyone over in ten years because I cannot keep the house tidy enough. If they can afford help, obviously, this is not as needed!
Wonderful suggestions, Retriever. My neighbors have had a nanny since this first child was born, but the boy does seem to want to come over and watch/ help me play with the yard and plants. I’ll see if they’ll allow him over- perhaps at first with his caregiver. Some days he stands in the window and waves- sweet, huh? I’ll be moving away from here in a few months, otherwise I’d try to insinuate myself more as relief to the parents or as friend to the boy who would relate but who has to transcend barriers most of us have never known.
Hey, try not caring about the mess at your place. I have a friend who has no special challenges in her life other than her organizational skills falling far short of her other genius, and her house is a wreck. You have to wend your way through stuff and scarcely can find a seat. But who cares? She and her family are worth it. Maybe she opts to have no formal dinner parties, but tea and convo are always enjoyable, as they must be at your place in spades. And there’s always the great outdoors in which to entertain, as long as there’s a path to the loo.
Find myself thinking about your daughter and how well she’ll do in college and on her own. She’s grown up and seen more of real life- hardship, coping, striving and generosity- than most students her age. How proud you must be of where she is and of how far she’ll go on her own terms, and terms that may include others’ welfare.
I need a bible verse for a 24 year old young man who passed away unexpectedly. He was autistic, without speech but very bright. Something to the effect of how much we all learned from him, and how important of a person he is, the joy he brought us etc. My email is firstname.lastname@example.org Thank you very much