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.

For the Last Time, It's NOT My Parenting (and if you ask again, I'm Going To Throw You Off A Bridge)

It started over tea. She wanted to have a tea party. But she didn't want to use water. That's for babies! She wanted me to make tea. Which I couldn't do, I was helping her older sister with her Algebra. Part of homeschooling is taking turns. Littles, at 7, isn't always good with that. Well, let's face it, she is really bad at it. When it is her turn, she expects everyone else to wait. But make her wait? And it is Meltdown-City. She will extract her pound of flesh, one way or another. Of course, it passed. It always does. But the aftermath for me is the hardest part. The way I am left feeling: drained, defeated, ready to cry.

I suppose I shouldn't be too upset. She hasn't had a tantrum all week long. Her dad was gone for ten days and in that time, she has been fine. We have had a few missteps here and there, but no full blown I HATE YOU I HATE YOU I HATE YOU episodes. Maybe that means she is getting older. Maybe that means the developmental delay that is Autism Spectrum Disorder is righting itself. Maybe that means the naked chanting that I did by melting green crayon and throwing sheets to the wind has paid off. (I am just kidding about that last part.) Maybe it's just that the tide is high and the moon is low. Hell, I don't know.

And that's part of the problem. I don't know. If you ask me a question about grammar or algebra or llama breeding, I can probably tell you. Or, barring that, I can find out. But as far as the exact reason my daughter is tantrumming, or the tried and true foolproof method of stopping said fit, that seems to be missing on Google. Certainly there are suggestions, but what if they don't work? What then? With children, you don't add A to B and necessarily get C.

If I was a carpenter, I would be sure that I have the latest tools, the best ones to get the job done. A hammer will always work as a hammer. A level, well, that's designed for leveling. With just a few simple tools, a carpenter can build many things. With a few more, he becomes a master craftsman. It can take a lifetime to wield the tools correctly. But even if his skill is only passable, he will be able to create a chair.

As a parent, I work hard to develop my parenting skills. I think if had neurotypical children I would be a pretty good parent. I add tools to my toolbox often. They say if you only tool you have is a hammer, then everything looks like a nail. I am guilty of this at times. But a soft word or patience? Those don't always work. In truth, there are times that I run out of tools in my toolbox. I keep thinking if I just gain more gadgets, if I just learn more schematics, I will, eventually, build the Taj Mahal. But with autism? All bets are off. Sometimes, a level ends up as a fulcrum. Or a hammer ends up as a paper weight. Sometimes, I end up dancing around like a monkey because I have to think outside the box. Down is up, and and Left is Right and OhMyGod is it 5 o' clock yet??

I am not a drinker. I have a bit of Irish Cream or Kahlua in my hot cocoa or coffee about twice a month. A glass of wine about as often. And though I talk about it, I just don't do it. There are times I wish I did drink more. Then I wouldn't care so damn much when I reach the end of the toolbox and find nothing but sandpaper and a ball ping hammer. But I do care, and it kills me and I always wonder, why can't I be a better parent? Why can't I help her calm down before she gets to that place where she is completely unreasonable? Why must I be left feeling like a hollow shell with every nerve exposed? What am I doing wrong?

Tina Cruz is a writer, wife and mother of three children, two who have high-functioning autism, one who has Asperger's tendencies. She advocates for autism awareness and education, as well as acceptance. She views autism as a growth process and the opportunity to connect parents for support as a privilege. She is the Special Needs Editor at typeamom and her own site, Send Chocolate reflects her passion for her children and autism. She is the founder and editor here at Autism Sucks.

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Coming Home

Today was the third meeting with our architect as we continue the initial stages of building our dream home. Interestingly, at this meeting there was cause to disclose my eldest daughter's special needs as we discussed the functionality of our house plans for our kids. At the end of our meeting, the architect shared with us that he too has a special child. It is always amazing to see the shift in relational dynamic that occurs when two people, almost strangers, share this one bit of information. Suddenly, doors open into each others' lives and mutual understanding and empathy flow forth. As a parent of a child with special needs I notice an unspoken camaraderie, or a "Club" so to speak, with other parents in similar situations. No matter what the diagnosis or functioning level of your respective children, there is that immediate bond when you hear another parent's story or see them struggling at a restaurant or store with a child that reminds you of your own. An instant understanding. A deep connection. It crosses oceans, creates bridges, connects continents, transcends dialect, race and creed. It is unspoken pain, unspoken love, unspoken relatedness. I wonder sometimes if we parents, as a result of not quite "fitting into the norm," are trying to find and/or create some kind of community within the larger society. A community where we don't have to explain ourselves, where our child isn't stared at or worse - NOT stared at (you know, when people too politely avert their eyes). As the mother of both a "non-typical" child and three "typical" children, I always have one foot in one planet and one in the other. Dual citizenship. I straddle the galaxy and it never ceases to amaze me how both close and far away these worlds are from each other. The ability to live 2 parallel lives poses challenges as well as offers great reward and a sense of balance to a once lopsided existence. My oldest, afflicted with serious seizures at 4 months of age and diagnosed with Autism and "Mental Retardation" at age 2, was my only child for 10 years. For a decade I was a Mom, but didn't feel like I could relate one bit to the mothers around me. My life was filled with Physical, Occupational, Speech Therapies, private and county intervention, music therapy, neurologists, endocrinologists, cranial sacral therapy, secretin infusions, DAN protocols, visits to specialists, travel to conferences, and thousands of hours logged onto the Internet researching and on my knees in prayer. I was not on Planet Typical... the planet of regular Mommies doing regular parenting things, but rather orbiting in its atmosphere, desperate yet fearful to land. It's interesting because I have met some of the most wonderful people in the line at Baja Fresh, in an ice cream parlor, or by visiting each other's blogs from hundreds of miles away. We have crossed paths and bonded through the gravitational pull that draws special needs parents toward each other. I think when we meet someone who travels our path, who prays our prayers, who picked up the pieces of our same shattered dreams, who rebuilt our same new dreams, who revelled in new joys, who feel our pride and rejoicing, who cry our tears, who live on our planet, we breathe a sigh of relief. The relief of not needing to explain ourselves or our child's different behavior, appearance, or needs. The relief of speaking our own language. The relief of not having to give explanations. The relief of being released from orbit, even if just for a little while, and feeling the warm soil of our Homeland. Alicia D. has essays to be featured in the upcoming issues of Today's Caregiver and Autism Spectrum Quarterly. She can be found blogging about raising her four girls, one with Autism, at Welcome To My Planet.

For the Holidays

Just a reminder that the Holidays can really suck if you have a child with autism. Sucks for them, sucks for you, sucks for everyone around. In regards to the kids, it's mostly overstimulation. Too much going on, changes in their routine, overload of gifts and people and BOOM! Meltdown City. Sometimes it just can't be helped, but try your best to make things business as usual for your kids on the spectrum. Don't let your relatives push you or your kids into a situation that will lead to even more chaos. If you have determined that your kids can only handle opening 3 gifts at a time without going into a paper tearing, package wrecking frenzy, then don't let great aunt Sally push another present on little Johnny as she says, "Oh, it's just one more! What can it hurt? I want to see his face when he opens it!" (side note: often little Johnny will not ever remember who gave him what, let alone remember who great aunt Sally is.) If this does happen, great aunt Sally will be the one with the weird look on her face as little Johnny opens the present, takes one look and tosses it aside, as it's not what he's currently fixated on. It's also a very lonely time of year for us grownups. Often, even our families don't fully comprehend what autism is (heck, they don't live it 24/7). They shake their heads at the kids' outbursts, furrow their brows and look aghast at the weird behaviors, and often will request that you and your 'special' kids come late and leave early, if you're invited at all. You'd think that people would be more accommodating, as it's the kids that have the disability, yet all sorts of otherwise 'typical' adults are either so uncomfortable with your kids autism or so inflexible at having their 'good' holiday 'ruined' that they just don't want you & your non-typical mess around. I learned, after many years of trying to integrate the boys into the usual family gatherings, that it was too rough on the boys, as well as me. Now we host Christmas Eve at my house, we invite everyone, and only ask that people let us know how many are coming, so we can have enough food and time to prep the boys. This is good for the boys, who can wander off at will and play with those things that are familiar to them. The problem with this set-up is that a lot of time, not everyone comes, or they will come late and leave early so as not to have to deal with the autism world too long. Either way, you often find yourself alone for a good chunk of the holidays, with only your autistic non-social kids to keep you company. I have no solution to this, other than to tell you to keep tabs on your friends who also have kids on the spectrum, because they're the only ones who really know what you're going through. Total side note but also relevant - please be careful of light displays with blinking or flashing lights. These can often trigger seizures in special needs kids, and just because yours hasn't had one yet doesn't mean it's never going to happen. Better to be safe than in the emergency room on Christmas. 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