trivial...yet huge...why.

Shaking inside, walking around the house as a madwoman. Yelling at anything crossing my path, tonight...my poor dog. My big gentle giant seems to just be in the wrong place at the wrong time....again and again. Why...why cant my son tell me where it hurts, Why cant i get across to him that I'm only trying to help.

Why does this damned fever keep coming and going, and why doesn't he want me?? He wants daddy, and he's sure to let me know.

Shaking inside...pacing about...."why is the frigg'n air not working again?!" This then leads to....finding and picking out everything i HATE about my house, forgetting all the things i love about it. "You know what the problem is i bet...plumber told you to leave the vents open, you didn't" Of course i know its not my husbands fault its just part of the cycle, these events hurt everyone. Why....the hell does he still love me??

Does he?

Tonight....tonight is a bad night. My son needs to see a doctor and I cant take him. Three of us holding him down and still no exam could be preformed. He needs an exam badly. "ouch" grabbing various areas of his body...lately his genitals.

Tonight, i feel so lost.

I feel inadequate as mom.

I feel undeserving of love..

I feel undeserving of this rant. This is nothing....nothing to so many, yet tonight...for me, this is huge, and i don't get it..

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Mommy meltdown

Today I cried. I had finally had it. Having children on the spectrum really sucks, and I have gone on for so long with just “dealing with it” every day that it finally happened. Mummy meltdown. Not to have a poor pity me session but seriously it was bound to happen. How long did I think I could actually go on here with 6 children, no help, and two on the spectrum?

Granted there are other children who have far worse disabilities, but here in this household it is bad enough. The worse thing about having a child on the spectrum is that the do not look like they have a disability. They look so typical. But back to the mummy meltdown. It was probably brewing over March break as each child came down with a nasty stomach bug, one after the other. So when it was back to school today I was glad to be back into the regular routine.

However, my Joshua had a rough time getting back into the school thing and didn’t want to go. I finally managed to get him into the truck and over to the school, but once there he put up a terrible fight and wouldn’t get out. I had to call out the VP who fortunately for me is a great guy and totally gets Joshua. So after about 15 minutes of Joshua screaming, kicking, hitting and trying to run off, the VP managed to get him under control and into the school and so I left.

Then I cried. Hard. The flow of tears felt like it would never end. For half an hour I allowed myself to scream “why me?” I allowed myself to yell at all those ignorant people who claim Autism can be cured by diet, or other things that only give us parents false hope. I allowed myself to feel the guilt and shame that comes along when my son chases the garbage man in his truck down the street screaming for him to give back his stuff, or when he has violent outbursts, or when he has a meltdown in the grocery store. I allowed myself to feel guilty about not being able to spend more quality time with my 4 typical children because Zak and Josh require me 24 / 7. I allowed myself to be me, not the supermom people think that I am.

Then I stopped. Wiped away the tears. I am a wife, a bitch and the biggest advocate for all of my children. I am a momof6 who only has time to feel sorry for herself for about half an hour, once a month or so. Times up.

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ONE LONG DAY

When I had my first child, thirty years ago, I was still a child myself. In fact, I think I still was when I had my third child eight years later. I made mistakes along the way but I always loved being a mother. It was the most fulfilling and rewarding thing I had ever done with my life. When my children grew up and moved away, I felt empty. I felt as if I no longer had purpose in my life. So, seventeen months ago at the age of 46 and with an ailing husband and a few health issues of my own, my husband and I became foster parents to an eight-month-old boy. Because the father is a relative of mine, I knew the history and knew that our foster child would become our child. What we didn't know was that he would be diagnosed with Autism.

Despite his diagnosis, we love Matty and we adopted him on November 20, 2009. At that point, he had lived with us for 13 months. We really didn't think that raising him was going to change much in our lives. Because of my husband's illness, we had already stopped doing many of things we previously enjoyed. We actually thought that having a baby would be a fun new life for us. (We both had children from prior marriages but none together.) We even thought that having a laughing happy baby would help my husband to feel better. Give him a new and bright focus so he wouldn't dwell on his iron lung. And you know, for a while it really worked. But, Autism changes everything.

When you think you know all there is to know about Autism, you have a lot to learn. Anyone who says that he/she knows all about Autism is a liar. Autism is a mystery. It is an unpredictable series of who-knows-what. Every day is so the same yet so very very different. What the Autistic child loves one day can throw him into a total meltdown the next day. Things we take for granted; eating, washing, sleeping, become an issue.

Mealtime. Once upon a time, this was the most pleasant part of the day. Now, it's a thing we fear. If the food doesn't look right or feel right, (yes, I said feel right because he must touch and squeeze and lick every item on his plate.) he won't eat it. The few things he will eat wreak havoc in his over sensitive belly. He won't eat cereal but rocks are great. He won't eat rice but lint is wonderful! This leads to the next issue SLEEP. I remember it, I miss it, and I long for it! I think at this point I may even kill for it if I had the strength and wasn't in so much pain. But, when Matty doesn't sleep, no one sleeps.

Our days begin at 6:30 AM. We strive to keep life as structured as possible for Matty because any change is apt to drive him into himself and cause the day to run on into the wee wee hours while he tries to sort it out. For example, Last week, we had a visitor just before dinner. It was a family member that Matty has only seen a few times and she only stayed about an hour. Matty withdrew during the visit then became very cranky at bedtime. It took two full hours of walking and rocking his 35 pounds to sleep that night. That was a minor thing. Christmas week was one looooong day for us. But that’s another story. A structured day for us consists of keeping meals, snacks, naps, and playtimes at the same time every day. Except for the one hour of therapy Matty gets each week, we are alone. From early morning to after dinner it is two old people chasing this child around trying to keep him safe from himself. He is obsessed with anything dangerous; stairways, outlets, climbing onto windowsills, tables, bookcases, and lately the shelves of the entertainment center too. A simple “NO!” does not divert him. He ignores all verbal commands and seems to know that we can’t get up fast enough to stop him on his path of self-destruction.

Afternoons on good weather days, I take him outdoors where I stand over him pulling pebbles out of his mouth or stopping him from pouring sand into his ears. He does fine in his stroller, sometimes for a full ten minutes! Back indoors while I cook a meal, my husband tries to keep him entertained but all he wants is to stare at the television and throw his toys. Oh, the toys. The money we spent on toys and all he does is look at them and throw them. He is not content until every inch of the carpet is covered with toys. The scattering of toys makes it harder for us to stumble over as we rush to pull him from an outlet or from bobbing for bubbles in the potty. After dinner and a bath we begin the bedtime battles.

Matty has decided that he hates bedtime. We used to put him to bed and he would play happily there for sometimes up to an hour before falling asleep. But not anymore. For the last several weeks we lay him down and he cries. Then, he begins to scream. We begin taking turns rocking him. First in the rocking chair, that lasts about two minutes, then up and walking. We can tag-team this task for up to three hours per night. Or, he falls asleep after only an hour then wakes up later and starts the screaming routine and the tag-team task then takes up to FOUR hours.

No rest for the weary. The stress of the ordeal has caused me to tear some muscles in my arms. The pain of that rivals the pain of my fibromyalgia and the severe arthritis in my neck. I often do this rocking in tears. But I push on because my husband can only go so far (and he ALWAYS goes too far) before getting short of breath. But, it isn’t all bad. Matty is on a waiting list for day care and if we are still alive in three months, we will finally have a break! We are dangerously close to burning out now. We have no help what-so-ever and we just pray we will make it another three months and that no one will come along and push Matty back on the waiting list. We are so tired. Our marriage is struggling. Our health is deteriorating. Our hopes are fading.

You may ask, how does one love a child like this? Going along with the puzzle that Autism is, …you just do. Because of my limited me time, it took four sittings to write this all down.

Saying It Out Loud

I'm gonna do what a lot of people would never do – I'm going to be honest with my actual thoughts and not sugar coat it and say it out loud. Autism sucks. Autism sucks and I wish my kids didn't have it. Autism sucks and it's not fair; to them or to me. Autism sucks and so does the ignorant attitude of people who make unthinking idiotic comments. These are all the 'sayable' things. The “Unsayable” things are harsh. Bitter, negative, unfriendly. It'll probably surprise most of the people who know me. I don't say these things out loud. People are always telling me how funny I am, what a good sense of humor I have, what a great handle I have on it all. It must be my background in role-playing games – it makes me a good actor. My current character is a super mom who is a super fighter for her kids and autism advocate, who is both mom & dad, not to mention teacher and a host of all those other things. Let me rip up the character sheet for a moment and let the harsh truth seep in... Autism sucks. It is not a gift, a challenge to be overcome at the end of the road – it is a devastation to every parent who ever heard the diagnosis, and is lifelong, unless you're one of the few who get lucky with the 'cure of the day', whether it be Secretin, ABA, Music Therapy, Hyperbaric Oxygen, GFCF diet, or the many other cures that come and go. I'm not saying these things don't help some kids – they do, and I've seen good things happen for some, but I've never personally met a child who has been completely 'recovered'; only heard of them in the news and over the internet. I've tried them all, and my kids weren't the 'lucky' ones. With every failure, one more drop of hope leaves the glass. All your plans and dreams for your child disappear. It is not simply a 'trip to Holland' that landed in China, or whatever the damn metaphor is. Most of the time it is a trip straight to Hell. Sometimes I want to trade my kids in for typical ones. Many times I wish I could go back in time and do it all again and yes – change things. Most of the time I just want to quit. I feel jealous of my friends that have kids that are 'normal', or at least more typical than mine. I feel jealous of those that have husbands and family who help them. I feel jealous that if I want to tear my hair out and scream and take off, the most I can do is lock myself in the bathroom with the kids pounding on the door. I wish I would have married someone with stronger character. I feel envious of the scum of an ex-husband who took off 2 months after the boys were diagnosed, because he's never had to deal with a day of autism. Never had to deal with the Regional Center, the school districts, the various therapies, etc. Never had to use respite hours just to get things done (people actually use respite for respite?) Yes, respite is used to get things done. I learned when the boys were little that many environments were so overstimulating, they just couldn't handle it. Many were the times I walked out of Wal Mart or some other place with a screaming child under each arm, shouting out, “I'm not kidnapping them, they're autistic!”. Now they're 12, and I can't carry one of them, let alone both, so a lot of times, we just don't go anywhere. I'm tired of the snide comments, never to my face, but as I'm walking out with the screamer, the ones that comment, “Some people just don't know how to discipline their kids!”. Once I actually answered the fool by saying, “Since you're such an expert on childcare, perhaps you'd volunteer to babysit this Saturday night?” Not to mention the time I shouted back, “They're autistic – what's your excuse?” I'm envious of those who can just have a babysitter, instead of search for a caretaker/babysitter/crisis interventionist who can handle a 12 year old autistic boy's temper tantrum. I wish I had a child who I could take to a 'natural' dentist. Now that the doctor prescribed Atavan before dental visits, it only takes 2 people to hold him down so the dentist can look in his mouth – it used to take 4 people. I don't have a choice – if they have cavities, they have to use anesthesia. Hell, I have to bring a helper when we go to the doctor, because Mikey will throw himself on the floor and refuse to move, and he's too big for me to pick up. I want a child who has interests, not fixations. The higher functioning one, when he collects things, has to have every single thing in the series, or he loses it. As collecting a complete set of anything is prohibitively expensive, I discourage any type of collecting that comes along. I have not told my son about Bakugan, that new card/toy game. The thought of a whole new series to collect and the issues revolving around not having a certain item in it makes me very afraid. Speaking of fixations, I wish my other child wouldn't scream for hours when we can't find a certain book, toy, shirt, etc. And why is it that the one he wants is never the one I just happen to have seen, but one I haven't actually seen in months? The worst is when he asks for a video or book that I got rid of years ago, before I realized how bad the fixation issue was. Now I simply buy lots of big bins, and store stuff in the garage. To that end, I miss being able to get rid of stuff for good. I miss the days when I could open the windows in my house instead of having padlocks on them to keep my eloping son inside and safe. I miss opening the front door in the morning to cool off the house. I wish I could leave my son outside for the few minutes I need to use the bathroom, instead of dragging him inside with me and locking the house, just in case he decides to hop the fence and run onto the freeway like he did previously. I also miss the days when I didn't have to have locks on the kitchen cabinets to keep my son from gorging till he gets sick. I accidentally left the cream cheese container on the counter this morning while starting a load of wash, and by the time I got back, the container had been licked clean. I'm jealous of those who get to use their college degrees. I have a Masters Degree, but instead, I'm my children's caretaker, earning minimum wage through IHSS, because holding a real job where you get to be with grown ups doesn't work when you have no one else who is willing to take care of your kids. There's just not enough sick days and family leave time – I tried. I'm envious of people who get to be around other grown ups on a regular basis. I'm jealous of people who can earn enough to buy a home. We will be renters forever, as the minimum wage won't let us qualify, but also because of the fact that IHSS is constantly in jeopardy of being cut from the state budget makes my job an unstable one as well. Oh, and IHSS won't let you contribute into social security, so for the last few years, in terms of chalking up working hours for social security, I technically have been NOT WORKING. Yeah. And so much for having a savings account, as if I keep one, the boys won't get their SSI. I will never be able to retire. I want to smack the fools who always tell me I must be doubly blessed, or that God doesn't give you any more than you can handle. I want to rip out their intestines and shout, “Handle this!” Same goes for the people who tell me how I should be grateful it's not worse than it is, or that the boys aren't both as bad as the lower functioning one. Side note – these people have NEVER volunteered to babysit my kids. I want to be able to take a shower when it's convenient for me, not have to sneak it in before the kids get up or after they go to bed or wait till I have respite help, because the last time I tried to shower when they were awake, I came out to the kitchen with all the eggs cracked on the floor and Mikey singing about Humpty Dumpty. I want to be able to stay up late again, and not crash at 8:30 pm, just because the kids went to bed at 8:00, and if I don't follow, I may never get sleep, because their sleep patterns are so unpredictable. I'm envious of anyone who can sleep through an entire night, without waking up after 3 or 4 hours, thinking of all the stress and horrors and the worst – what the future might hold for my kids. I'm jealous of my friends who can sleep in and tell their kids to be quiet in the morning, and the kids actually listen. I want to be able to write like this on a regular basis, but I just don't have that kind of solid alone-time on the computer (I've been writing this for months – started it right after Tina told me about this new blog). For that matter, I'm envious of all those people who have time to have their own blogs. Hell, I'm envious of those that have enough time to read other people's blogs. Don't get me wrong – there are good things; lots of things I love about my special children, but many people write about the good. I'm here to speak the unspeakable parts. I'm here to do the job nobody else wants to do, or has the guts to do. I'm the bad guy all the time in my fight – I'm the super bitch to the school district, regional center, and any other agency who is supposed to provide appropriate services for my child but doesn't, whether it be from budget or indifference. I don't care if these people like me, I don't care about establishing a 'relationship' with them – I just want them to do their frigging job – the one they get paid for, yet the one I end up doing for free. I don't want to be jealous, envious, bitter, angry, tired, hurt, exhausted, alone, ungrateful – but I am. I wish I was a better person, like the “Super Mom” character I portray every day, but I'm not – at least, not under the surface. If these kinds of thoughts make me a horrible person, then so be it – but at least I'm real. If I've learned anything from my ordeal, its that I can't afford to delude myself about anything. When you start lying to yourself, that's when you really get sucked under, and that's the time when the kids really suffer, and why would I be going through all this Hell if I didn't completely and utterly love my children despite it all? But just because I'd go through Hell and back for my kids doesn't mean I have to enjoy the trip. Bobbie is the mother of twin boys with autism, one high-functioning and one lower-functioning. She doesn't have time to blog, but you can follow her on twitter: @Bobbie42

Sick of It

We have been to 2 parties this weekend. 1 block party and 1 birthday party. We stayed for about 3 hours, because that is about all I or Bacon can handle. He played and ate and had a good time, and I was able to have some semi normal conversations with other parents. 

The coming home part is always the part that stinks. It is the part that ends with me hauling his 45 pound body home while he is screaming and flailing, then carrying him to his room to get him to cool off. It is the part that happens before Mr. T comes home. It is the part that has gotten so bad, I am physically ill. It is so bad that I really don't want to go anywhere with him anymore. 

I am sick of the weird looks. I am sick of the questions. I am just sick of it all. I am tired of fighting with a child who only wants to scream at me when he doesn't get his way. I am tired of fighting with a child who doesn't understand that it just isn't that way all the time. I am tired of throwing up from it and I am tired of feeling guilty for it. 

What advice do you all have? What techniques work for your Aspie? What books have helped you cope with this? What support groups have you joined? Do you use counseling? What works? Mr. T doesn't get it, and he isn't here 24/7/365 so he couldn't possibly get it. Those of you moms who are in it do get it. Help please. 

*My name is  Mrs. Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

Camp Struggles

My eldest son is 7. He was diagnosed with Asperger's just last December, just on the cusp of his 7th birthday. We had known something was up for years but couldn't put our finger on what it was or how to cope. We bought books about ADD, ADHD, OCD, graphomotor dysfunction, even Autism and Asperger's but we didn't KNOW until we traveled 3 hours to a specialist, not covered by any insurances, who charged $500 to actually sit with our son and figure it all out. --and then a second $500 to help us figure out what to do with the information. But he was worth every penny. It was a relief to know the name of this thing that controlled our lives. The thing that had become so big that a question like "What accommodations do you make for your son?" had become unanswerable because...didn't everyone live like this? Joey got thrown out of no less than 3 preschools. He was "removed" from the private kindergarten that was supposed to be "WONDERFUL" after only 3 days. He was a "disruption" because he told the teacher that the year 2006 shouldn't have smiley faces in the zeros and then insisted that she remove them. He wouldn't stand on the 7 on the carpet because he was NOT 7 years old. And he loved to turn the air conditioner on and off because he loved to control the movement of the air. Taking him out of that school was that start of a great change in his life. Two willing teachers and an IEP later, my Dino Boy is doing fairly well in an inclusion classroom. I just wish that everyone could see the brilliance that exists in between random acts of eating things that are not food and his stimming habit of bouncing round the room stretching his fingers in all directions. So this was about Camp right? Dino boy and Little Man (see my other blog for that story) go to a wonderful YMCA camp. Little man loves it and Dino Boy went there for part of the summer last year too. So I was very surprised when after ONE WEEK they called me. "Ummm, Ms. Eile, We would just you to know that we are giving you warning that Dino Boy may not be able to stay at camp this summer." Now what? I,single working mother am...screwed. But we talked. Camp talked to me, I talked to ex husband. We spent the weekend talking to Dino Boy about staying with the group, not eating things that are not food, asking for help, telling people that you are frustrated instead of running into the woods, and Dino Boy got it. He really really did. And according to camp he does great, until about the time when there is 2 hours left in camp. He can't hold it in any longer. He struggles so hard to keep it together that on some days those last 2 hours cause him to overload.... And I don't know what to do about it. I KNOW KNOW KNOW that he is doing the best he can, He loves the camp SO much. We had parents night tonight and he just gushed about every activity. But I wish I could just give him a break. A place where he can lose it and still be ok, a place where he can run and play and plan his Jurassic Camp movie and just be loved. So next year...maybe I can find a special camp just for him and people like him...but is that the right choice? or should I just immerse him in "normal" teach him to swim like all the other fish? I don't have something catchy to end with...just an open question I guess. When you have a high function kid, what do you do? Should I constantly challenge him to move up or let him just coast during the summers? He gets so stressed. I just feel that its not fair but when he grows up he is going to need to deal with the outside world. Do I teach him to do that now...or wait just a bit?

8:30pm

I know I titled this post 8:30 pm, but the story really starts around 6:30pm--every night. That is the time when I, single mommy extraordinare, starts the bedtime routine for my 4 year old and 7 year old boys. First, I announce that this is the LAST tv show of the night. Dinner is over, dessert has been eaten and we need to agree to the last show. Sounds easy right? Sometimes its blissful. Little Brother says "I want to watch (insert Backyardigans, Sponge Bob or Crashbox here) and Big Brother happily agrees...other nights, not so much. Fighting ensues mom breaks up said fighting through compromise, computer, distraction... or insert bad parenting decision here. Step two, 7pm - Bath time. Frankly, to be honest, I LOVE bath time. No TV. I have the kids hostage. They tell me about their day, we laugh, make jokes. Its great. EXCEPT when they are fighting about the water temperature, or who gets to sit by the water, or which one gets their hair washed first. I used to pick which child went through the water torture first, but they hated that. I decided to that I would let fate control this choice, so I started playing the number game "Pick a number between 1 and 10" and whoever was closest would get to pick if they were first or second. But I found that I would cheat! I would think of the number after they had guessed in an attempt to alternate children....this failed miserably. So tonight my wonderful, thoughtful older son, Big Brother (BB) just offered to go first! Mommy loves him so much, sometimes he is so giving and rational and well, just wonderful. Then story time- 7:30. Story time can also be wonderful. My boys are great. They think outside of the box. Today we read a Little Critter book about going to the museum and then they proceeded to design their museum, for your information the Planetarium will be upstairs...their is no other option according to BB. Then we sing songs- they make me dance and they improvise sounds in between the verses. 8pm Hugs, Kisses, Goodnight....or NOT Post bedtime activities BB- "Mother don't you know I stay up for HOURS!" and he is right, he does stay up for hours. First, with LB still awake, we go potty (again) get water (again) The scariest words I get to hear from BB- "Mother, You don't need to tuck me back in. I can do it myself" uh-oh TROUBLE So I check upstairs...and this is literally 3 minutes since I left the room. BB "Look, we are building a temple" and he is, complete with buildings, dinosaurs, dragons and other toys that have resided in the toy closet, untouched, for months. "Please don't take it down....Your not mad are you?" "No, not mad, just go to bed" Minutes go by, I hear doors creaking, cabinet doors slamming, I go back upstairs...BB says to LB "See, you made mother come back up" oh yeah, I have to mention this here. Where did this mother thing come from? I was Mom or mommy up until a few weeks ago- then Mother, Mother, Mother. I asked why and BB said- "Your my mother" Logical yes, but I wish I still got to be mommy. So where are we now...8:33 and things are quite...maybe.. Last night when I took out the garbage and 10pm I came back in to find a screaming BB asking where I had gone...so how long does he stay up? "Mother don't you know I stay up for HOURS!" So I am Eile, I have just started blogging here and at my new blog Going Down Laughing. I am a single mom with two boys, a 7 year old Aspie and a 4 year old child that thinks he knows everything. We laugh a lot in my house, and I hope that my writing gets funnier with time.

An Open Letter to the Airline Industry from an Aspergian’s (Autistic Child) Mom,

Let me begin by saying my child is not the enemy. Please try not to treat him like one.

My child has the same rights and should be allowed to ride in a plane, your plane, just as the gentleman snoring loudly in seat 3B is right now. Yes, I understand that he’s screaming bloody murder right now. He’s frightened. The pressure in the cabin is affecting his sensibilities. The people talking loudly to each other; the sounds that the plane is making are affecting him. Please don’t keep stopping by and checking his seatbelt every 10 seconds. I can’t help but notice that you didn’t seem to care about the other screaming child in the back of the plane.

Oh? It’s a newborn? Well, can I ask why the double standard? How is it okay for that parent to escape scrutiny, yet you keep harassing me? My child should “know better”, you say? Hmmmmm. I don’t think you understand.

Allow me to explain. Also, allow me to clarify.

Just like that newborn, my son struggles to verbalize his discomfort in social situations. His understanding of this situation in his mind is identical to that newborn back there. I have taken the time and great effort to make sure we have things to make him as comfortable as possible for the duration of this trip, but even I can’t ultimately control his reactions. As his parent, I do my best, just as you strive to do, each day in your job. Sometimes I miss the mark. Trust me, it is definitely not intentional. I did not awaken this morning thinking “How can I piss off everyone my son comes in contact with?” I have much bigger fish to fry.

In the not so distant past, it was customary for a passenger when booking a flight to tell the person who booked the reservation what special needs they might have, if any. This needs to start making a comeback. I am more than happy to let the staff know our situation, and if necessary, things we can do as a team to make this trip as enjoyable for everyone. It may mean enduring some moments that are not so comfortable for a period of time, but the end result might turn out to be not so bad. The best part is you have an opportunity for a learning moment to take place. We can all stand to learn something, wouldn’t you agree?

The worst thing you can do is make me or my family feel like we have done something wrong or inconvenienced you in some way. On every flight (or just about) I’m certain that there is a screaming child or an obnoxiously drunk adult or that one person who can’t wait until the sign is turned off to move about the cabin. I don’t always see a police escort waiting for them at the airline terminal, so why single me out? It’s because autism is such a hot topic, isn’t it? Or, is it your lack of training and understanding of the situation? Please help me to understand.

My family is not your enemy. Please try not to treat us like one.

Lets’ try to work together to keep those skies as friendly as we can. I’m game if you are.

Sincerely, CrazedMommy

Shash and her family fly the not-so-friendly skies rather frequently. They have the miles to prove it. She has two amazing boys, one with Asperger's, a form of high-functioning autism, and in her copious amounts of spare time is a Teaching Assistant in a special needs classroom at an elementary school. Read more about her life and family at Diary of a Crazed Mommy. This is her first post here at Autism Sucks.

We're Still Married?!

"So what is the rate?" She inclined her head towards me. I swallowed, stalling because I didn't know. I knew it was high. I looked at her and said, "Not sure, but I know it is higher than the national average. That's just over 50% now." So I decided to come home and google up some actual figures. There is no question that raising a child with autism, even high-functioning autism, is a challenge. It is a challenge financially, emotionally, spiritually and attitudinally. It is an entire paradigm shift. Like living with a duck who wants grapes...all the time. It isn't hard to feel at your wits' end ..often. Many times J comes home and I just have nothing else to give. I am spent. Absolutely worn out, and not able to give to one more person. And who gets the short end of the stick? You guessed it: J does. And yet he rarely complains.

As I write this, he has sallied-forth on a mission of mercy. Yes, the kids are tucked into their beds, and he has gone to procure Starbucks mocha, the nectar of the gods. He knows foreplay. Or maybe he just knows how to keep me sane. Since life can

often be a war zone, and I, crawling over enemy lines without hesitation (okay, maybe there is a little hesitation) a medic on duty is necessary. That's where J comes in. I guess it works because we take care of each other. We get along well, and well, we don't really have to work at it. Which is good, because there isn't much time to work on much of anything in this house, not the way the littles behave. We can't take on anymore.

There is a reason we have cats. Cats are independent, don't mind if they aren't the center of attention and often prefer not to be. We don't have a dog, though I would love one, and maybe someday soon, we may take the plunge. But I don't have the time to devote to puppy training and walking and just being generally slobbered over and followed around. I get that enough. We would probably kill a fish, forgetting to feed it. And you don't want to see my yard. When we moved back home after the fire, we decided to do our own gardening. But me, in my infinite wisdom decided that we would do the Green Thing and not use poison on the lawn to kill the weeds. And, did I mention that I now use a rotary mower to save the environment? Unfortunately, it is now my lawn that needs salvation.

Lacking time, I haven't done the requisite internet search for nematodes and other magic organic fixes to protect my lawn from the weedie beasties. Consequently, my lawn, which of course, someone forgot to water, is now brown with green things bobbing in not quite a sea of crabgrass. We do manage to get it somewhat mowed, but it seems to be a losing battle. The flowerbeds are overgrown, and all good intentions to clear them and plant something gave way to a brochure left on our front stoop about code enforcement and happy neighbors. We don't know which one of the wonderful residents of our 'hood left it for us, but there it is.

And my answer? You try mowing the lawn when you have a 6 yr old in the middle of a screaming fit for who knows the reason (sometimes, there are no reasons) and a 9 yr old being defiant and refusing to do anything except repeat, "Can I have a cookie? Can I have a cookie? Can I have a cookie?" And this after being told, as I am wont to do: "Question asked and answered," ad nauseum. And amidst this, I will take time to mow the lawn? What planet does the anal neighbor with the perfect yard and the perfect teens (only they aren't because I see them on the corner) who mows his lawn and trims his plants nearly every day...what planet is he from?

So, there is little time left to work on things like marriages, or dinner reservations or breathing. So it is a very good thing that my marriage is usually so easy. We figure we survived a fire, when the house was completely smoked out, everything was destroyed and we had nothing but each other. We survived the insurance settlement and the rebuilding process and the redecorating and even the relocating. Autism after that? Cake.

In any case, I came home and found the figures. According to a few online sources, it is over 80%. Dr. Phil even pegged the rate at 86% if you can believe it. 86% of marriages amongst couples who have a child with autism end in divorce. So, since we have two children, does that make our rate higher? In fact, statistically, we aren't married at all! Yay, we are living in sin, and have been for almost 19 years! (Then why aren't we having more fun?)

TLC feels very lucky to still be married after all this crap. She has three children, two with high-functioning autism, she homeschools and is still mostly sane. She views autism as a growth process and the opportunity to connect parents for support as a passion. Read more of her misadventures at Send Chocolate. This blog is her gift to the Autism Community.

Flailing On The Fourth

I am not a mom who takes this whole "Asperger's" thing lying down. I am not an advocate mom like some of the really great mom's I know. I need to get out there and do that. I just haven't been in the pool long enough to get in the deep end just yet. I am a mom however who does not tolerate any garbage when it comes to people dealing with my kid. 

The Fourth of July is one of my least favorite holidays. I know that you probably think that is all "UN-American" and horrible, so sue me. Seriously though, throughout my life it has proven to be crazy. If it was not spent in the ER for hives, pink eye, or some other freaky ailment that I managed to catch at a summer barbecue, something weird happened when we were out at some big fireworks display. (For example my springer spaniel ate an ENTIRE CHOCOLATE TEXAS SHEET CAKE in my grandmother's kitchen. When we got back to her house we thought that the dog was dead. She wasn't. She was in a sugar coma for three days.) 

With Bacon and his Asperger's the Fourth has been less than fun. When he was two he was so terrified he screamed for two weeks every time we went out side about the scary fireworks. It was SO MUCH FUN. Last year he had a great time with the other kids watching Mr. T and the other dads blow stuff up. This year sucked. There were way too many kids most of whom know that Bacon likes to watch the fireworks but doesn't like to touch them. Still these same kids kept pushing and pushing for him to touch them. 

Finally when the neighborhood's biggest pain in the butt (She is 12, she has two pet GOATS, and knocks on everyone's doors at 9pm looking for someone to play with.) was chasing after him with a sparkler and trying to grab him I lost it and yelled at her. 

"EMILY! Leave him alone. He is four, he told you he is afraid of the fireworks, and if you don't stop I am going to have to ask you to go home." 

She of course ran to her dad and cried like she was 4, and her dad gave me the stink eye.  I could have cared less. She is OLD ENOUGH to know better. He is old enough to know that she should not be chasing after a little kid with FIREWORKS, especially when that kid is freaking out. 

I am mostly frustrated because there is another boy that lives close to them that has Asperger's that they treat with kid gloves. Not that I want them to treat Bacon like that, but I also don't think that I should have to staple a sign to his forehead reading "PLEASE TREAT ME NICELY AS I AM NOT NEURO-TYPICAL" 

Was it not obvious from him freaking the hell out all not? Was it not obvious when he was running in circles and smacking himself in the head? Or do people think that is normal four year old behavior? It had me freaking the hell out, and I had taken two Xanax and drank some wine! 

How do you handle this? What do I do? I know I can't forever bully all of the nasty kids out there. (Although technically I didn't bully that little snot.) I just don't feel like I have the right answer or any control. So now as an adult the Fourth of July still sucks, but for a whole new reason, because I can't keep my son safe or under control. 

*My name is Faith Tantrum. I am a 31 year old mom to a 4 year old son who was recently diagnosed with Asperger's. I blog almost every day at Momma's Tantrum about our life with Asperger's, Coffee, the crazy antics here, and more. I do have a fierce potty mouth so if you are easily offended, just cover your eyes and hum loudly!*

Supermom vs. Autism

I was standing in line at the grocery store, waiting to pay for the basket full of groceries I had amassed on my once a month grocery stock-up. I hate
grocery shopping, especially with kids, but I had procrastinated too long and the bread had molded and we were out of milk. My children were trying valiantly to hold it together; it was late in the afternoon and had been a long day. Grocery shopping is a break from the Routine that basically rules our lives, so often there is a difficulty in this endeavor. But today the children were on their best behavior. They were helping put
groceries on the conveyor belt, while JBean kept up a steady stream of chatter. Today it wasn't them, it was me. My head was throbbing: I needed caffeine and I needed quiet.

My son decided to chat up the person behind us: "Do you like Mario Kart?" The person mumbled something politely, too quietly for me to hear. JBear took this as an invitation and continued, "I have Mario Kart for the DS. I also have a Wii. Do you have a Wii? I like playing boxing. I am good at boxing." I glanced back and the woman he was talking to seemed ok with her verbose companion, if a bit noncommittal. My son continued:

"Did you see the Indiana Jones movie? I did, it was
good. They have the Lego game of Indiana Jones for the Wii coming out next month. I want that. Lego also makes a Star Wars game for the DS. They are making one for the Wii, but it's not out yet..."

Again, I glanced back and saw the woman shuffling her feet, looking around nervously. Time to reign him in. "JBear, shh! Come help me with the groceries." He didn't hear me. I had to call him three times. Then he started asking for gum at the checkout counter. And a yo yo. Pleeeeease? He has this trip-switch, when he has something on his mind, when he wants something, he just keeps asking. I don't even know if he realizes he does it. About that time, the lady got that look. Oh, you don't know the look? Simple.

When people notice something is a bit different with your kids, they react in one of two ways. The first group widens their eyes in amazement and says, "Boy, you sure have your hands full!" And yes, yes, I do. But it is what it is. I don't have an "S" embroidered underneath my t-shirt. I am just a mom, dealing with what I have been given. I don't want praise and I don't want pity. But often, they look at me as though I stepped from a space ship, a complete alien entity. If I throw the homeschool aspect in to the conversation, I see the door slam shut, the eyes cloud over, and I can almost hear the voice in their head as they thank the Lord that they don't have kids like mine, and thank goodness it isn't contagious!

The other group I encounter widens their eyes in surprise and says, "But they seem so normal." This is actually frustrating. This is the reaction I get when I try to explain Asperger's. I know that on the spectrum of special needs, Asperger's is considered pretty low. And my kids are actually mildly affected. Their behaviors are more annoying or frustrating than dangerous. My son has not eloped from a classroom since the First Grade. Of course, it helps that he has been homeschooled since the Second Grade, I suppose.

He does have an anger and frustration problem. In fact, when he is angry, he could give a salty dawg a run for his grog. He has recently decided that it is really cool to respond to any insult, real or imagined, "I know you are!" You can imagine how productive that is! He is in the habit of cornering people, because he is a social guy. He wants to interact, and find interesting things in common, but he doesn't pick up the cues when someone has had enough. I am constantly playing watch dog for him, translating so they will not miss out on what he has to offer, worried that people won't like him. Or worse maybe, they will judge me because of who he is.

I am not in the habit of explaining myself to random strangers, but I must be lacking. When I do try to explain to someone who inevitably asks, "What's Asperger's," I can sometimes hear, "Well, all kids do THAT." And yes, that's true. All kids do prattle on about minutiae. All kids have terrible table manners. All kids get mad and frustrated and yell. All kids don't know how to figure out when you have had enough of them. All kids interrupt. All kids wear the same clothes, every day, even if they are dirty, and get ticked off if told they can't wear that shirt again until it is washed. All kids harp over and over again about allowance, video games they want, going to the library...whatever it is that is on their mind at that very moment. All kids throw fits when they don't get their way. All kids need help getting dressed, even when they can actually accomplish this task themselves. All kids have unreasonable fears and cannot take out the garbage at night or get up to go to the bathroom in a darkened room. But the point here, is mine do it more. That's what Asperger's and High-Functioning Autism looks like. I didn't want bragging rights. I am not trying to one-up anyone else. I am simply trying to live with kids who have to live with "mild-mannered Autism." Anyone who uses this term clearly has never lived with nor experienced autism.

I don't play the Label Game. I don't have Munchausen Syndrome by Proxy. I don't find my identity in being Supermom or having kids with "special needs." We sought a diagnosis for my son simply because he wasn't functioning in school very well, and we started seeing some signs at home. I knew something was wrong. I wrote a letter to the school, asking for an evaluation. The district did their tests, gave us their result, and then we obtained our own private evaluation. We ended up with a diagnosis and an IEP. With some interventions and by educating myself, we found accommodations that worked for him. I learned how to talk to him, how to calm him down, how to provide a sensory diet and just learn to live with the quirkiness that can be autism. At some point, I started rolling with the flow, and it became, if not easy, something familiar. And, it was okay. I thought that was the end. Autism had touched us, but it was a tentative touch.

Cut to 2006. Those who read will know this already, but we had a house fire, and lost everything. The house was standing, but they gutted it, and rebuilt everything but the bones. Every item except for the clothes on our backs was destroyed. Of course, we all took it hard, but my six year old was particularly devastated. It was and is, the only home she'd ever known. On a good day, she keeps most of her emotions to herself. This caused her to retreat inside herself. She would build little worlds with her My Little Ponies, and Littlest Pet Shop, barricade herself inside the toy houses. Walls of toys would sit between her and the rest of us; she was shutting us out. We sought counseling, and of course, the question we all had was, is it the trauma or is she also on the Spectrum as well? After what we thought was a failed bout of counseling, it proved to be the catalyst and we decided to have our little JBean evaluated for autism.

I went back and forth, second-guessing myself. Autism is a spectrum, and there is a saying, "If you've seen one kid with Asperger's, you've seen one kid with Asperger's. My son and daughter are as different as night and day. I would look at her and think, "No way she is on the Spectrum...she isn't like JBear." I waffled and tested her myself, and I wanted to be wrong. She was diagnosed with autistic disorder in October.

So when the woman behind me gave me that look, I just smiled at her and said, "Kids!" About that time, the cashier finished ringing up my groceries. There is a time for education, and there is a time for cutting your losses and just getting the heck out of Dodge. So I'm sorry to the autism advocates,just know some days I fight the good fight. But today I pulled myself up by my bootstraps. This wasn't the day to try and educate the public. This was a day to take my children home with me, cuddle them close and read books while munching cookies. This was a day to just be. I swallowed the lump in my throat that came from unshed tears. Yes, sometimes I grieve for what they don't have. And maybe that's not what Supermom would do. As I rolled out to the car, I realized the lump in my throat wasn't just grief. It was something else, as well. It was a fierce, protective love, and a knowing that I am exactly where I am supposed to be. And I don't think that Supermom could have it any better.

T, who just does what she can do some days

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