The Second Son

I have a child, a beautiful child. He has only just turned eleven and has been the funny, smart light of my life in the darkest hours. His compassion for his brother has been amazing, as has his tolerance. Until now.

This morning we are rushing to an emergency psych consultation for my second son. Not my first born Aspie, but my youngest... the one that was meant to be easier, happier, less troubled. We are having a tough time lately, my Mum is very sick, our business has suffered and teetered on the brink of closure due to the financial crisis, my oldest is hitting puberty, and I, myself, am experiencing the start of menopause. Whilst the family has been tested I can honestly say the love has not wavered. But maybe the attention has.

He is angry, seriously angry. Boiling over at the most minute things, hairbreath temper trigger. He is threatening to kill himself, and others. He tried to impale a ruler into his larynx a school, he makes threatening gestures to his friends, and at a birthday party this last weekend he told them all he was going to buy a gun and kill them all... and himself.

The really scary part is that he takes no ownership of this anger, these threats. It is always someone else's fault for not doing what he wants, for causing his reaction. We are at a loss, the school is concerned and powerless, friends shake their heads in disbelief.

I am pinning my hopes on this professional man and his history of helping my sons. If he cannot then I do not know where to turn, or what to do. I am scared. Really scared.

This was meant to be my easy child...

Really Not Good

As some of you who follow my main blog Meaninless Meandering from a Madmother would have seen that yesterday was not a good day, and had started with a not good night. What I neglected (chose not to) mention over there was the incident which triggered the bad night.

I am married to the calmest, most patient man in the universe, Big Boy. All along this autism journey we have been on exactly the same page with our children, agreeing on our methods, making sure Boy 2 does not suffer due to having an older sibling with ASD, believing in the ability of our oldest to grow into a functioning, happy adult. Well, most days anyway. But everybody has a breaking point.

The night before last Big Boy was helping/supervising both boys with their homework. And for the first time in over a decade, he lost his temper and screamed at our children. Not yelled, screamed. Now I am the loud, scream at them person in this relationship. I am the you get your arse moving NOW ranter. They are used to me and my Madmother ways, and usually respond quickly knowing Mummy has reached THAT point where we cannot push her buttons any further and we'll fall into line as if the last thrity minutes of ignoring/whining/arguing/cheekiness had never happened.

 I do think they deserved it. There are times they take full advantage of their placid Dad, and can be downright disrespectful. They just chose the wrong time this time. He is tired, stressed from work, unwell. He had had enough. And he blew.

Don't get me wrong, he did not yell abuse, it was more along the lines of "Enough! You both need to start showing some respect as I'm trying to help you here. This is not MY homework, it is yours and either you stop arguing and start appreciating me being here, or else you can just struggle through by yourselves..." But screamed at top volume of his grown man voice.

The problem is they did not expect it. The issue is that it truly scared them. The sad thing is that it pulled the emotional rug out from under their feet. Boy 1 was devastated, and did not stop shaking and sobbing for the next three hours. Boy 2 was saying "I'm numb. Is it normal to feel nothing? I cannot feel anything..." I am sure he was in shock.

I held them and tried to calm and reassure them both, but it meant a very late night and two boys who would not sleep without Mum lying close. Which is why I ended up on the floor, cold and stiff at 1am in the morning.

My poor, poor boys. All three of them.

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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• No witty title, just a simple and heartfelt goodbye Bob (sendchocolatenow.com)

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.

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.

Every Picture Tells a Story

The Hubby, Scamp and Spiff. My fellas.

This photo is one of many hundreds of photos taken over the course of a family trip. Can you spot which one of my children is Autistic? To an untrained eye, it is rather hard to tell. Both of my boys can be rather well behaved in public places, but then there are those times; the ones where Spiff starts flapping his arms or waving his bracelet around. These moments usually happen in more crowded spaces. Not long after this photo was taken, we boarded a Green Line T train in Boston full of people and he began to flap his hands wildly to calm himself in that situation. While it attracted many stares and puzzled looks, it helped him relax. It's incredibly important for him to be comfortable in any situation, and he has learned how to calm himself in just about any kind. It's been a long road, and we're still on it.

The other day I was going through our family photos as I was transferring them from one computer to another. As I glanced at photo after photo of my kids, I noticed there were so many of my son in a group or family photo where he doesn't look at the camera, or is sitting just a touch away from the rest of us. Or both in the same photo. There were more than I realized. We chalk it up to one of his many quirks, and we are fine with this one and all the others. Other people might look at these photos or us when we take the photos and think he is being rude; but he is not. He might look uncomfortable and like he doesn't want to be a part of the "moment", but deep down inside he does. He really does.

He's just being him. Beautiful, beautiful Spiff.