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.

The Word Doesn't Change the Kid: Autism 101

As a new author of this site, I thought I'd start by introducing myself. My name is Jeannie and my six-year-old son, Mr. Busypants, has mild autism. Below is one of my earliest blogs. I thought I'd start off on this site by sharing my story about when autism entered my life and what having a child with autism means to me. Miss Chattyshoes is interested in all things potty. The other day she stood over the toilet to say "bye-bye" to its flushing contents. Suddenly her nuk popped out of her cheeky little face, instantly sucked down to the point of no return. Perplexed and concerned, she pointed to the toilet and begged for "ki-ki." At this young age, Miss Chattyshoes is already declaring her independence. She does so in many ways, but the most obvious is her reaction to peer influence. One of her best buddies is M, a neighbor from across the street. M is 7 months her senior and full of words and wisdom. For example, we've been calling Miss CS's nuk a nuk for 18 months. She spends one day with M and her nuk is now a ki-ki. The same goes for her sippy cup, which was just that: a sippy cup. But M calls it a ba-ba, so now Miss CS calls it a ba-ba. What I knew about autism came from two sources: the movies (specifically Mercry Rising and Rain Man) and a film we watched in the 6th grade (so bizarre that I even remember this particular film) that described autism as a condition where the person was lost in his own little world and behaved like a chimpanzee. The other tidbit I knew of autism (or thought I knew) was that one day a toddler was talking and engaged and seemingly the next his social and speech skills were lost. This was autism to me. And so I began working through my fear that one day my baby would wake up and be mentally, emotionally and socially gone. With me, Mr. Busypants had a boisterous laugh that filled the house. We spent hours running around our house in Lisle, circling through the kitchen, dining room and living room, hiding and seeking, stomping and giggling. With others, he was stoic and serious. When the word autism re-entered my vocabulary, fear as I had not yet known it came as well. It took a while to work through the anguish. For me, the first step was recognizing what autism was and what it wasn't. The DSM-IV defines autism as (I) a) impairment in social interactions marked by a lack of eye contact, facial expression and social gestures. CHECK. b) impairments in communication manifested in a delay in spoken language and (later) repetitive language and a lack of spontaneous make-believe play or social imitative play. CHECK. c) restricted repetitive behavior patterns, interests and activities including preoccupation with balls and matchbox cars (CHECK), inflexible adherence to routines and rituals including but not limited to eating French toast sticks every morning two years, throwing a sippy cup and all unwanted food off the high chair tray, being hypnotized by spinning objects such as ceiling fans, and flicking objects such as door stops for extended periods of time (CHECK CHECK CHECK CHECK). Stereotyped and repetitive motor mannerisms including head shaking, picking up every stick within a 2 mile radius at the playground, and general Monk-like behavior (think 2002 series appearing on USA about an obsessive-compulsive ex-cop who solves crimes) (CHECK). DSM-IV does NOT describe autism as: (a) futureless (b) hopeless (c) relationshipless (d) joyless (e) speechless (f) loveless In a nutshell, the word did not change the kid. Mr. Busypants is spectacular. You need only look into his eyes to see the wheels turning--the thinking process is like a roller coaster ride. Fast, intense, thrillseeking. It's all there in those bright, blue eyes. He sees things we can't. He organizes. He engages. He responds. He follows through to completion. I fall short on all of the above on a semi-regular basis. From the early age of 21 months, Mr. Busypants had a fascination with water. He couldn't hear me scream his name two feed away, but turn the bath tub on three houses down and he was there in a flash. Part of that fascination extended to the toilet. A week into our new Aurora house, he too "broke" a toilet. Though Miss Chattyshoes hovered over her daddy in the master bathroom as he diligently retrieved her invaluable nuk, I mean ki-ki, from this vital household fixture, Mr. Busypants had dad replacing the first-floor toilet after flushing a mega-block. This kid is larger than life; he thinks big. Jeannie Anderson is a stay-at-home mom with two children, Mr. Busypants, 6, and Miss Chattyshoes, almost 2. She is a part time college-level writing instructor at three Chicago-area colleges and writes about the Adventures of Mr. Busypants at Mama Busy Pants.

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Why I Don't Open the Can....

As an advocate parent, I have been told more than once that I don't show my vulnerabilities. I've also been told that I seem to 'have it all together' by some moms who felt like they were holding on by their fingertips. It makes me sad when I hear that because I so clearly don't have it all together, and I wouldn't want anyone to think I'm trying to one-up them on this struggle we're all in on together. I am pretty organized (Type A) and structured (anal-retentive) and I do believe those qualities are good in the management and parenting of a special needs child. I have come to find over the last few years what works for me and my family, and I use those discoveries the best I can. But why am I not vulnerable? Well, that answer has come to me in small little stops and starts lately.... Like when I was standing in the kitchen of one of my favorite girlfriends in the world and burst into tears looking at her kids' drawings. Or when I've sat on the beach on various occasions this summer watching families have the time of their lives while my child is back at the house....unwilling to even come close to the shore. Or today......the ultimate in vulnerability. I was cleaning through things in my child's room as I make room for his big-boy bed and had to go through his keep-sake box. It has everything right from the very beginning: ultrasound pics, hospital bracelet, baby blankets, teethers, bottle, cups, birthday cards, you get the idea...... I went through it pretty quickly because I knew if I didn't I would get really sad. I was only transferring all of it to a much bigger sterlite box anyway.....none of it was going anywhere. So I sifted. Moved it. No attachment. No vigor. No tears. Until I came across one little thing. The sports strap from my child's first pair of glasses. My little boy has been wearing glasses for lazy eye/farsightedness since he was 19 months old. This strap, as tiny as it was, is what I always seem to symbolize with the beginning of knowing there was something different with my kid. And so I looked at it. Held it. Cried over it. Actually cried for a pretty good while as I thought about the baby I had.....the baby I still have......the child he has become......will never be......all of it. When I was done I put the rest of the memorabilia away but kept out the sport strap and stashed it in my own nightstand. So maybe when I feel like I need to have that moment of vulnerability I'll go there and have that. I'm not trying to be stronger than you....this is just the way I need to handle it. I hope the other moms, the ones who think I have it 'so together' will understand. I am The Chick.....I'm a SAHM living Down South where I write about my life.....marriage, friends, music, activism, fads, oh.....and the life of a mom with a 6 year-old boy with autism. Stop by my farm for more!

I Love You

Having an "Aspie" means that you come to know certain things. You learn quickly that they use the same phrases repetitively. It is part of that whole routine thing that helps to soothe them. I think it also is part of what some experts refer to as "scripted speech" - meaning that they hear this and then use it because they think that is how you are always supposed to talk. 

My Bacon uses "scripted speech" a LOT. Things are DEELICIOUS, and he always has a GREAT IDEA. Often THAT'S NOT SAFE, or NOT A GREAT IDEA. His newest (and my favorite) is What I was probably thinking is.... 

He does say "I love you" but only after you have told him that first. He gives hugs and kisses and "Eskimo kisses" (which he calls snuggles) at free will. He will gladly tell you that he misses you or missed you when you were gone. He is vibrant and wonderful with language, but still never just says "I love you momma."

I am okay with that. He is still little, and it is a hard concept to learn and grasp and get. Maybe he will never be the first to say it. That will be okay. As long as I always tell him, and he knows long after I am gone that he was my sun, moon, stars and everything and I loved him with every fiber of my body and soul. 

Then before he left to go to Crazy Aunt Ethel's on Monday he ran inside to give me a hug and a kiss, he threw his arms around my neck and whispered in my ear "I love you momma. I love you more than the sun and the moon and the stars." 

I cried when he left. Not because I was sad, but because finally my little man said the words that I thought that he would never say first, that he loves me. 

*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!*