Editor’s Pick
AUGUST 20, 2011 11:46AM

I am the Mother You Shun in Wal-Mart

Rate: 53 Flag

 

            I am the mother you shun in Wal-Mart. Your disapproving eyes flit from my unbrushed hair to focus upon my four year old son, who is dressed in a long-sleeved, fatigue shirt and tight, black-wool leggings, even though it’s August. He’s also wearing a cowboy holster and sheriff’s badge. Any minute now, he’ll begin yelling and shrieking about the toy he wants to buy. You wonder what is wrong with him. You wonder what is wrong with me. I feel your scolding, scalding stares, and I wish I could assure you that we’d be out of your comfortable way soon. But I have no idea how long this horrible, harried trip to Wal-Mart will last.  All I know is that this will be our only outing of the week, and it was only out of sheer desperation that I brought him here. We are out of milk, and if my son does not have milk tonight in his special cup, he will have a horrible, hour-long rage. He will hit me, crawl under the table, scream, and throw things. His little sister will cry in fear. The dogs will cower behind the sofa. I will pour myself a big glass of Chardonnay. When the rage is finally over, which can last anywhere from fifteen minutes to three hours, I will cuddle him, massage his shoulders, put him to bed, say “I love you,” and go out to the living room and cry and drink some more.

            My son has Asperger’s Syndrome. Most people have now heard of it because Mark Zukerberg is rumored to have it. I wonder though. I see little resemblance between the billionaire genius and my four-year-old son. I wonder if the Facebook founder had daily, explosive, irrational rages when he was four too. I wonder if his mother drank.

            I knew we had a problem when my son was 18 months old. My family told me that he was just “pressing my buttons” when he began having screaming fits when he didn’t get his way. They said I was spoiling him. But they couldn’t explain why he had extreme reactions to large crowds and loud noises. One time when we were in a public bathroom, the automatic toilet flushed, and my son threw himself against the door and beat on it, trying to get away. The lady in the next stall came out and glared at me. I know she thought I was beating him. Another time in Church, the organist started playing, and my son dived under the pew in front of him. The man beside us moved over, far over.

            I thought my little boy was just sensitive, until at age three, he started having bathroom issues too. He would “hold it” until his little tummy was bloated, and one time, he didn’t “go” for four days.

             I took him to the pediatrician. I had to tell elaborate lies about where we were going, because by that time, doctors scared him. When he got his shots for preschool, he cried and screamed for a half hour straight. I practically have to plan a covert, military operation to get him there this time. Once we pulled into the parking lot, I had to bribe him with money – and a lot of it – my boy is smart -- just to get him out of the car. “I want paper money. No metal,” he says.

            I explain the bathroom problem to the doctor. The pediatrician tells me I should make my son sit on the toilet after each meal for approximately ten minutes. I pay my $50 co-pay and walk out the door. That night, I find out that ten minutes is a long time when you’re yelling through the door, “Sit there, damn it! Sit there!” When he finally does go, the toilet is smeared with feces. I assure my husband that it was just a mistake; our son is not smearing feces, he is not destined to become an axe murderer. I believe this. No, I hope this. I desperately want it to be true.

            For a few weeks, things seemed to be getting better, but then my son began to pull out his eyelashes. Then he picked at a mosquito bite until it bled. Once he sucked on his arm until a red bruise appeared, ironically shaped liked a little smile. He became more difficult for me to handle too. When I ran out of his children’s toothpaste and put regular, adult toothpaste on his brush, he screamed for an hour afterward. He said it was hot and burned his tongue. He accused me of trying to kill him.

           Our pediatrician finally recommended a psychiatrist. “He is displaying some signs of Asperger’s Syndrome,” he says quietly. “I’d like to refer you to this new doctor who specializes in child psychiatry.” For once, my child is not crying when we leave. I am. I Google the terms when I get home, and cry some more. I can’t believe my son has autism. There must be some mistake. My son is smart, verbal, and creative. Like so many other people, I have no idea what the “autism spectrum” really is, and it makes no sense to me that my intelligent, funny, beautiful little boy has anything in common with non-verbal, special needs children. My husband is as shocked as I am. We talk endlessly about it, and finally decide to get a second opinion.

            This time, we take our child to a children’s hospital. They give us literally 40 pages of forms to fill out, and ask the preschool to fill out inventories too. Four months later, when all the pieces of paper are compiled, they diagnose him with Asperger’s Syndrome, Attention Deficit Disorder, and Oppositional Behavior Disorder. My husband and I stare at each other in disbelief. It’s true. My husband starts to ask questions, but there are few answers. The Nice Doctors give us booklets, the names of parent-support groups, and refer us to another doctor, whose office is two hours away, because there are no child psychiatrists in our town who are taking new patients.

            I’ll be honest. I didn’t do much of anything right away. I couldn’t. When my family asked what the doctors had said, I wrote an e-mail to them: “This is hard to write. He has been diagnosed with autism. It’s on the high end of the spectrum, called Asperger’s Syndrome. (I am ashamed of this disclaimer, but still, I write it.) I know one day we will be the Poster Parents and do fund-raising and have benefits to raise awareness. But for right now, we are shocked and panicked and grief-stricken.”

            No one writes back. Perhaps they are just giving us a little space, I think.

            Finally, grief abates a little, and I begin to get back to the work of helping my boy. When I try to make an appointment with the child psychiatrist, he says, “I have a specialized practice, and I don’t take insurance. It’s $300 for the first evaluation. which should last an hour and a half and $150 for each session after that. I don’t do counseling; I just manage medicines. Now what was your son’s diagnosis again?”

My son is sitting beside me. I’ve never said it in front of my son. “Asperger’s Syndrome,” I whisper. I’m not even sure I’ve pronounced it right.

           “The first appointment I have is in three months,” New Doctor says. My son didn’t hear a word. He is looking at Halloween costumes in a magazine.  Halloween, or any holiday, ever, seems very far away to me.

           And so, three months later, during which time my son has had daily rages, including two where he threatened to kill me, we visit New Doctor. His office is resplendent with a water fountain in the foyer, deep burgundy couches in the waiting room, and what looks to be a real Tiffany lamp in his office.

            “I still can’t believe my son has autism,” I say to New Doctor, hoping he will tell me it’s all been a mistake.

            “This will be a problem until you accept it,” New Doctor tells me, somewhat harshly. “We will put him on this anti-psychotic medicine, try a social skills class, and enroll him in an occupational therapy program. This can work, over time. ”

            I tune out. The word “time” gets me. I am already stretched to my limit. I work 40 hours a week. I take my children to the pediatrician, dentist, eye doctor, and reading specialist; they both are in swimming lessons, and my husband is gone a lot because he works for the military. But sure, let’s add more classes.

           I tune back in to what the doctor is saying. He tells me that I’m doing a good job. I don’t believe him; it just sounds patronizing. He also tells me that there might worse to come, especially when my son enters the teenage years. He rattles off a long list of problems he will likely encounter – ordinary things like peer pressure, alcohol and drug abuse, hormones –all exacerbated by his special needs. It’s a glimpse into the future as my son’s mother, and to tell you the truth, I’m not sure I like what I see. In fact, I hate what I see. Where will I get the guts, help, information, help, respite, help, time, help, steadfastness, help, money, help, love, help, energy, help, I need for him in the coming years?

           About two months later, as the medicines kick in, the New Doctor turns out to be right.  My son does indeed get better. The rages have stopped, for the most part, except when we go to crowded, noisy places, like a restaurant, like a school concert, like Wal-Mart. I have cut my hours at work so I can take him to his therapies. I have learned to prevent a lot of problems for him by creating routines and eliminating a lot of extra things from our lives. It is hard. Very hard. Life seems … spare. But still, I see improvement, and I cling to it. My son seems more content, more balanced, and more, and I hate to use this word, but…normal.

           Me? I’m not sure I fared as well. I’m not normal anymore. I am tired. And to be honest, I blame myself, I blame my husband, I blame Old Doctor, New Doctor, and Nice Doctor. And on a lot of days, I blame my son. I know I’m not supposed to, but I do. I’m working with another psychiatrist, this time for me, trying to get past all that blame and anger.

            Till I do, I’m just another mother in Wal-Mart, walking fast, trying to avoid your eyes.

 

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Such an honest piece. I commend you for getting your son diagnosed and handling a difficult situation the best you can, which by the way sounds like you're doing a great job being a mom to your son. I know kids with Asperger's and autism. But, just remember, people stare at other people's kids for many reasons. You're not alone on that one. People stare at my kids because they're mixed-race. They ask questions too. Keep hanging in there! Great post.
Kristina. Wow.

Achingly beautiful in your honesty. Painfully heart-wrenching in all that is on your plate.

I just hope that I would never be one whose eyes you would need to avoid. God, I hope not. My love, Kristina ... my love and my heartfelt best wishes for strength and peace.
Beautiful writing about a difficult topic. I can't imagine what your family must deal with regularly, but I commend your courage.
I am sad for you and your family and wish your strength and courage. A retired teacher, I have seen a number of children with this condition succeed with solid parental support. People stare at me at Walmart because the ladies around here get all dressed up to shop in their rhinestones and big hair and I show up with my hair in a ponytail and chlorox stains on my clothes.
Excellent. I especially appreciate how you framed this.
i wish you peace and strength, and i believe you and your family will find both...rated
I am the mother of a teenager with autism. Things will change, morph, be different, be the same. Some things will be easier, others will not.
Your feelings, the good the bad the ugly, are all natural and those two will change, be different, the same.
Stare back at those who look because we are different. Who the hell appointed them regulators of life anyway? Stare back. Watch them cower away.
Good writing. And hand reached out across the aisles.
Your honest, heart-rending story touched me to the quick, Kristina. I wonder if you are familiar with John Elder Robison, an Aspergian who wrote Look Me in the Eye, and has a website for people with Asperger's and their loved ones. Best wishes.
Oh God. All best to you in this long struggle. (Hmm, perhaps your son will grow up to be another Zuckerberg and you will have an easy life then....but, sigh, there are only a few Zuckerbergs...)
You told your story with honesty and wonderful explanations of what it is like to have a child with autism. I have had 3 children over the past few years in my third grade classroom with Asperger's, one who had similiar behaviors to your son. Keeping his routine was the best thing I could do to help him. One day, the school office forgot to tell me in advance we were having a fire drill---I had asked to know in advance all year so I could prepare him. Even though he hated the sound of the alarm, if I could tell him that at 9:oo the alarm would ring and we would practice the fire drill it would go alright for him. It did not go alright for him on that day, and it was painful to watch his unraveling. I'm forwarding your post to all my teacher friends in particular as we delve in to our new school year and get to know our new students. Your post should be part of the teacher training programs. (hug)
Such painfully beautiful writing. ~r
The road of parenthood for some is a long, hard, uphill trail with lots of switchbacks. I wish for you some cool refreshing streams along the way and a beautiful view at the top.
Hey there. That's a tough assignment you have. I've worked with a lot of kids with Asperger’s Syndrome. I've truly enjoyed it. It's sad, but I hear that the new DSM is removing Asperger’s Syndrome from the literature and it will become "Spectrum Autism". I don't agree with it, because I've always seen a distinct difference between the two. Now kids with Asperger’s Syndrome won't get the unique attention they deserve. Then again, hopefully people will diagnose spectrum autism but still call it Asperger’s. We'll see. Rated.
Amazingly honest and heart touching. If I see you in Wal-Mart, I won't be annoyed and I won't avoid seeing you. In fact, your kid sounds pretty amazing.

I don't know if it's so, but I was told at an early age (as was my Mother) that I was Hyperactive (which, in the early 60's included ADD ADHD and higher forms of autism) and they recommended lithium to 'calm me down.'

My mother said, "No." I am so glad she chose that answer. I might be somewhere between Asperger's and "normal" (whatever *that* is.) It may be the difference of only a few neural paths in me, versus your son.

Your road is hard, to be sure. You are not alone, though. Make use of the sources available to you -- as many as you can find. It's not your fault, it's not your husband's fault and it's definitely not your son's fault. Hang in there and keep writing.

rated and strong high regards (moved me almost to tears)
Wonderful piece. Thank-you for sharing your story
Hard dis-ease for your child. Hard on parents. I understand how much you put into your children. Very honest and warm and true.

Get ready for IEP's in school. Those meetings are what I consider horrible because you seldom hear the good.

Remember the good. Keep those moments and gains close to you.
It must be a blessing to finally get a dianoses and meds that work. I know what if feels like to think you are the worst mother in the world. I used to buy my kids the great big bag of popcorn and soda AT THE BEGINNING of the walmart trip to ensure at least 20 solid minutes of peace. great post rated
Bless you, and thank you for sharing your story.
Bless you, and thank you for sharing your story.
I hope that anybody who sees you who is a parent would see and understand you are doing your best. I feel you can tell a parent who is "bad" from a parent full of love caught in a extremely difficult situation.
You tell your story so well with courage and determination to see your son through life as best as you both are able.
I'm glad you have somewhere to write about it and find support.
Just knowing what you may deal with seems to have helped, but in all honesty I don't know how you do it. Actually I do, because you are a mother you will get through. The cost to you is great, hugs.
Excellent writing on this tough phase you are in. For your son will change and grow. Asperger's is tough, but I'll bet your son will come into his own...you do and will need help for your nerves....
I was glad to read that your kids swim. Does your son love to swim? That really helped with mine. His nervous system was most calm when he was surrounded by water, and his energy had an 'unbreakable' environment...
Mine was also helped in public by my giving him a list of items to look for in the store, that would kick his 'hyper-focus' in.
I also quit feeding my son any dairy. Maybe there are some food triggers your son could do without?
Our kids' snacks became air-popped white popcorn, organic for no chemicals that would start him up, with some butter, salt, and crucially, Nutritional Yeast sprinkled on, all in layers (3), toss the popcorn each layer. The B vitamins in the Nut. Yeast calmed the heck out of all my kids, esp. Hyper Boy, and it's such a loved treat for them...and cheap.
I know, sounds weird, but tastes great. : )
Best wishes to you, Kristina...
My God this is brutally honest.

Let me be brutally honest back.
You ARE doing a great job, and regardless of all the negative reactions of people around you who have no idea,...you are loving your son with all you have.

You need to cut yourself some slack, and realize that you are doing the absolute best you can with what time and energy and moeny you have.
How can you do better than that? How can ANYWAY say otherwise?
Sad to read, only because I feel your tiredness and exhaustion from here, and know that you know this is the beginning of a very long rest of your life. I hope there are other parents near you who have children like this, just for the companionship. It must be a different level of lonely you are feeling and I really hope there is some light in your world soon.
I won't glare at you. I will smile. And send good thoughts.
Kristina, as I went to bed last night you were on my mind. I wanted to say so many things but see now that so many others have now read and said all that I wanted to. Mainly, that you are a wonderful mum ... who loves her child ... and that you are doing your very best .. and that is all you can do.

Keep writing here. Your writing is wonderful.

Much love to you.

Kate
Our daughter has Aspergers, and we've been there. My husband once returned home from Walmart convinced that Social Services would be calling on us due to a rage explosion our daughter had there. The explosions happened multiple times a day for years: any change, anything unexpected, anything scratchy, etc. This was before Aspergers was commonly known, so all we knew was that life was very hard for her (and therefore very hard for us).

I know all children are different, and all end results are different, so I don't know where your son will go. But I do want to give you some hope. If somebody had told us that at 23 our daughter would be a charming, responsible adult who had friends, successfully attended college and who has a job where her employers love her, I don't think I would have believed it. Sure, she still has her quirks, but she is successful and on her way to a good life.

Keep giving those hugs. The best thing I think we did for our daughter was to let her know that she was a good person and very loved.
I've never read what the parent goes through so I didn't really understand. As painful as it is for you to live, and write about publicly, I'm grateful that you were so honest. I hope more people gain understanding at the minute to minute battles you face, as I got a tiny bit of it here.

lschmoopie's last sentence was on the money. I'm not around kids much but if I meet someone with a child with Asperger's, your post will stick in my mind and I'll have a better understanding. I hope your son keeps improving, I wish you peace and some help. Thank you.
I'm sorry for what you are going through and for what you will go through, and sorry your family has these challenges. I'm also sorry that I might be one of the people who shun you at Wal-Mart, if I pay attention to you at all. I don't know that you are doing the best you can, that your child is autistic.

I might wrongly think you are one of those parents who will also selfishly take their screaming monsters to places where adults go to enjoy a pleasant evening. I am a lot more understanding toward mothers with children in stores of all kinds though than I am about the ones who show up with infants or toddlers just in time to ruin my quiet anniversary dinner in my favorite restaurant. But you don't do that. I know you don't.

And staring at mixed race kids? Maybe because they are so beautiful.
May your insurance always cover you, and your email box fill up with coupons for Wal Mart! You are a very special mother, that's why you got the job!

Love for eternity...
My heart goes out to you; I don't have a child with Aspergers but I do have a mom with life long mental illness who now has Alzheimer's. I understand what it feels like to be stared at and be ashamed because a loved one is acting out. Sending you prayers and strength.
What a beautifully written story on such a heart wrenching subject.
I am oozing empathy for you and have tears in my eyes. I have had similar issues/experiences/diagnoses with my son. People who think your kid is acting out because you haven't used the right parenting techniques just don't get it. I do. I've been in that same aisle in wal-mart.
It gets better. Make sure to find a good behaviorist. Invest in having them teach you verbal behavior therapy and how to carry out behavior plans. Then you will take your life back a little by little and understand your little cute son a lot better than you do. All my good wishes are going your way.
You've written about a difficult situation so beautifully and so clearly--and to me, as I read this, it is obvious that you're doing your best. I don't understand why some people are so damned judgmental. Try not to let them get you down--and know that you have a world of support here on OS.
What a brave sincere piece. I promise never ever again to prejudge what is going on between a parent and child and if we were to meet in Walmart ( don't shop there for political reasons so unlikely) I will not give you or your son the evil eye either. Try not to take the glares of others personally since for one thing it doesn't matter and secondly you have enough to deal with. For what it's worth I am sending you and your family every good wish there is and beg you not to overlook your other children. rated for courage
I'm so glad you posted here. I wish you well in the future. There is always hope. My story is that my daughter had a baby with a fellow who is ADD and a fisherman in Alaska. He can fish because he is his own boss and can think of all the millions of things that go into fishing all at the same time and he takes his meds. He is not Normal but she loves him and they both love their little one year old girl. Now the question is....what will her behaviors be? Her cousin has ADD and gets a special aide in kindergarten. She can be quite head strong already and took off crawling into the surf this last month squealing with pleasure and with no fear. I will be looking for more posts from you. Thank you Thank you Thank you!
I frequently take my 53-year-old, low-functioning autistic brother out into our community. He loves nature walks, going to restaurants and vintage car shows. I've noticed over these many years that people's reactions to him and his behaviors have changed and there seems to be more understanding and acceptance. Part of this I believe has to do with the fact that more information is available today regarding autism. Well written, honest essays (such as yours) from "folks in the trenches" who live with and care for autistic individuals go a long way in raising awareness and understanding.
Brilliant work! I've heard that equine therapy is used for people with autism spectrum disorders. I hope your load feels lighter after sharing yourself and reading these comments. All the best to you and your family.
My personal take is that people who shop in Wal-Mart are pleased to be serfs to an oligarchic and anti-democratic elite which long ago gave away our manufacturing jobs to the Chinese.
So I don't guess you'll be one of those staring at her in WalMart huh Drew?

The numbers of well known and (extremely) successful folks with Aspergers is surprising, so whatever you do Kristina hang in and hang on :). From my observations part of the problem is intelligence - these folks are usually VERY intelligent - like right at genius intelligent. The pace of life in general - and too many of the people in their environment - makes for a rather frustrating experience for them, everyone and thing else is too sloooowww... they're already there and past it and onto the next thing before us average folk even get a glimmer of it :-/.

Just keep on doing what you're doing and know you're not alone even though it too often feels like you are.

Rated for doing what must be done.
Well I suppose I won't. I'm sure that's a relief for us both.
Amazing piece. I will look for you writing in future; you have a clear and honest voice.
Amazing piece. I will look for your writing in future; you have a clear and honest voice.
Trig/Drew-Silly: You have a son, what if it was him? Would you still make fun?
Does it get better?
In my family's case, yes it did. But, it took time and perspective to see the world through ASD colored glasses.
Reach out to a ASD family support group - it's been a lifeline for us.
I'd only stare at your kid if you were screaming back at him.

My experience is with PWS

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002572/

which isn't officially on the spectrum but my sister has more autistic symptoms than most. I would reiterate so strongly - routine routine routine routine routine routine and then a little more routine. The hardest part of that, of course, is for you - no running out of milk or toothpaste, etc. And a parents' support group. Better than a shrink I would think.

http://www.parentingaspergerscommunity.com/public/503.cfm
First, I'll tell you what my mom said she wanted to tell you regarding my little brother: "So accurate! If I could comment, I'd like to tell that mom the following: Are you sure the boy you describe was not MY son? That was him a few years ago. He was never prescribed meds, but there were times I wished the dr. would give him something. Today he is age 12. Since school let out in early June (it is now Aug. 23), he has only has two "meltdowns." This is remarkable considering that we are preparing to move to another house in a different town, away from his comfort zone, and he has been very much against the idea of moving. I tell you this to give you hope: it DOES get better! It IS worth it. My son is a pure joy! Giving in to non-issues is the best advice I ever took."
I just want to hug you!! I was a teacher of SEVERELY gifted children (beyond Gifted, just like little grown-ups), which, as you know, about one quarter had Asperger’s. Don't mess with their routine, and life is great... but life isn't like that. I think you're amazing, you can tell he will go far with such a thoughtful mother. Keep it up, honey... it will pay off!!
@kate: for what it's worth, drew-silla isn't trig. and i'm only posting this so steve doesn't take any more crap for stuff he didn't do.
Hi, I am the mother of a non-verbal - for now - child with special needs. A few things I noticed from your story is that firstly, it hasn't been that long yet since the diagnosis, which was traumatic. Truly, a lot will heal and change. Secondly, and I have learned this from bitter and long experience - when people predict the future for you they are full. of. shit. Kids with special needs are different from one another, just like all kids are different from one another. For example, the letter writer below whose daughter is now a charming and succesful young adult. I do wonder why, in talking about a four year old, this person who was meant to be helping you is talking about what MIGHT happen ten years from now. I feel strongly about this because parents of children with disabilities get buckets of shit poured over their heads on a regular basis, and so much of it comes from professionals. A difficult adolescence is possible, but show me a normal four year old and I could just as easily predict the risk of anorexia, depression, anxiety, drug and alcohol abuse and dropping out of school when they are teenagers, for them. Finally, I'm really sorry you get stares and intolerance from stupid people. I want to reassure you that a lot of people out there understand that children are themselves, not entirely under your control, and that it's very easy, and stupid to judge from the outside looking in. When I see a kid going off I just send them and their parent love vibes while I go on my way.
Many of these comments anger me. They make it sound like you should be pitied, like you have a terrible prognosis and no chance of peace or happiness. And I'm sure you've felt that way enough already. So can I speak to you as one special needs mom to another?

Embrace these challenges! Embrace the chaos, the pain, the fear, the feelings of rejection, the loneliness, the uncertainty, the overwhelming-ness of it all. If you dwell too much on how hard it all is (and we both know the obstacles can seem insurmountable), you'll miss the little sparks of joy, the glimpses of hope and promises of your son's potential.

Sure, our children with mental illnesses may not have the same future waiting for them that awaits neurotypical children, but they still have a future. And how much greater will our joy be if we can go with them from "How will I ever get through the next hour with this impossible child?!" to "Will you be coming home for Thanksgiving this year, son?"

There are days when I don't think I'm cut out for my job as mom to six kids, four of whom have mental diagnoses, days when I'd give anything to just run away for a while - or forever. But when I look back, I realize our greatest joys have come when we managed to spend some time like a "normal" family. And I realize that it is in those fleeting moments, which most people would take for granted, that I feel God's love the strongest.

Hang in there. You are brave and strong and beautiful. You are a good mom. God WILL reward you when you persevere. But maybe, just maybe, He's already given you a gift worth rejoicing over.
@Candace: If you care to send me a safe email, I will send you a screen shot of Myriad giving Drew-Silla hell for the comment, with Trig responding as Trig, "I know, I know". Comment is now gone, but I have the screen shot. If it isn't Trig, than he shouldn't be responding to people when they give Drew-Silla crap for being as ass.
I won't whitewash the problem or praise you, just tell you as the mother of a child with mental health issues that I know how hard it is and how profoundly sad you can feel. I'm sorry your family is going through this.

It can be especially hard for "normal" siblings. I didn't realize for a long time the impact my child's issues had on our other child. If it is not aleady happening, I strongly recommend counseling or some kind of play therapy for your other child. They need help coping too and don't have the emotional resources of an adult.

Yes, I know, one more thing to worry about. Best wishes to you and your family.
As the mom of a physically handicapped child, I understand your pain. Our son was diagnosed at 5 with Duchenne's muscular dystrophy, a disease which eventually killed him, but as it progressed and his body grew twisted and we relied on a wheelchair for transportation, we drew the stares and comments too. The worst was when his peers would shun him for being different. As for adults, try to remember that other parents respond to such situations not in condemnation so much as in profound relief that the problem is yours and not theirs. That response is met with guilt at thinking such a horrible, selfish, unChristian sor of thing, so they become conflicted and then avoid you if they know you and your eyes if they do not. Please remember it is not about you or your son -- it is about them. Keep on keeping on and take each day as it comes. You have the strength whether you know it or not. (and keep writing about it).
@kate: i believe your screen shot says what you say it does. i'm telling you drew-silla isn't trig. you can do with that fact whatever you like.
This is a beautiful piece and so honest. Thank you for sharing your trials with us. I have two neighbors with kids with autism. I am also helping someone right now with a dissertation and reading about autism. This seemed interesting to me http://www.huffingtonpost.com/dr-mark-hyman/autism-research-discovery_b_794967.html I think it takes great patience to be you and great love. And at least I'm one person in Walmart who knows what Autism looks like and won't judge! :)
You paint the picture so very well with your words here Kristina. One thing I've come to know is that even (especially) children with a 'diagnosis' need discipline, consistently applied. Kids with these disorders are often very bright, as evidenced by your son. I hope you will stand strong and find a 'supernanny' method of providing the discipline every child needs, regardless of other influencing factors. My hat is off to you for your determination and the support you are giving this child and hope you find some for yourself as well - on line friends can make a big impact when you're at your wits end and just need some encouragement. Big benefit - no meetings or classes!
I'm in tears and so very embarrassed because I'm one of the people who probably thought horrible things about "YOU and YOUR" child. I know a couple who has two children with Asperger’s Syndrome. I didn't know just how devastating this can be for a family. I do know "the Mom" is tired and "relishes" her time away from the boys. Don't misunderstand, she LOVES her kids but I'm sure you can relate to what she is going through. I often thought about offering to watch the boys but never verbalize it because they are so much work and I know I could not handle them. It takes a very special person to cope day after day with such extreme circumstances. I just hope you have a large support system. Though to be honest, it doesn't sound like it.
As the mom of 3 on the spectrum who are now 20, 18, and 15, I nod along and say, "been there." Your son will not always be 4. If he has a good OT, he will learn how to compensate for his sensitivities. I personally never enter a Wal Mart without my iPod ears in; the place is a sensory horror show! I consider the irony of children such as mine being gifted upon a person who was raised by her own parents to avoid drawing attention to self at all cost. I have learned to laugh at absurdity. I am a relentless advocate for my kids and no longer worry that I am hurting the feelings of teachers/aides/doctors/therapists/etc. Least of all do I worry about strangers in a store who have no right to judge but can't resist the opportunity. My eyes flip them off while my digits remain still. You will find an inner core of steel that you never dreamed existed within. Someday you will marvel at your good fortune in being presented this challenge. Until then, be kind to yourself.
I got several emails all telling me Drew Silla is Trig brother Nanaheyhey. But I think they both have the password. Do you have the password, too? Are you all Drew Silla?
What an honest exploration of what's behind the iceberg tip we see in parents' lives. We all need to cut each other oceans of slack, to use too many sea images in one comment! Lots of energy and peace to you!