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...

Ok, so it's not all flowers and rainbows with autism

"Mama, I don't LIKE it!" My JBean wasn't happy. Although this is not that uncommon, it was still a concern. The Nutcracker was coming up, and she was due to perform.

Last year, she was a flower. "I liked being a flower mama. Flowers are graceful, and princess-y. It was a pretty dance." This year, she was a lamb. She is less-than-thrilled.
"I hate the Lamb Dance! It's stupid. The costume is silly, I look like a little kid." I figured reminding her that is indeed what she is? Not so helpful.

Early on, I told her she didn't have to dance if she didn't want to. The Stage Mother? I am the furthest thing from that person. You won't see me pushing my children against their will. I have a theory about extra-curricular activities: if it isn't fun, what's the point? This may be because I was, if not born with two left feet, in possession of them now. Dancing well is hard for me, and I don't have autism. Still, if I were to try to dance, with actual choreography, you would think I was having a seizure of some sort.

I have given her every opportunity to bow out gracefully. She won't be a prima ballerina; she is still in the first-level class. All of her friends have pretty much moved up a level. She just isn't ready. As a parent, my heart hurts just a little bit for her. I worry as she gets older, girls will make fun of her. But she won't quit. She assures me that she wants to dance. And she does. She just doesn't love this dance. Still, she is trying, and that's all we can ask. To me, that in itself is a victory.

This Spring, she again will dance. This time, she will be a rainbow. She will wear a pastel-colored tutu. She wasn't excited about the costume, but she'll get used to it. And I have decided to get her some private lessons to get her "over the hump." I am optimistic that she may improve. She told me she was passionate about her dancing. I guess it is good to be passionate...do you really have to be good at something to love it?

Now I am looking for a triumph over the fear I have for her. The great, white-hot worry that wakes me at night. I think of the time that is coming, soon, or not-so-soon, when the girls look at her and laugh. When they look at her, whispering behind their hands. When it hits her just how behind she is, and that without 10,000 hours, she just isn't going to get those dance solos that she may be wanting. She will be tried, and found less than adequate. And though we cannot keep our children from pain, it is still a very difficult thing to watch. A lump in my throat and tears pricking my eyes, I wait.

Tina has two left feet and the right attitude, usually. Chocolate helps. She also blogs on Send Chocolate Now. Autism Sucks is her brainchild.

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What's it like to have a "normal" child?

I have no idea.

By the word normal, I mean typical. Regular. What you expect to get when you get a kid. The word most people use anyway, whether or not it's PC these days or not...

I'll go ahead and say it: My kids are not normal. I can be OK with that to a point. There are a lot of people that are not normal. I sure don't mean to step on any toes here, so please don't take offense. I am in no way trying to insult anyone or anyone else's kids. But my sweet kids, they are not normal.

I have three children. E (boy) is 11, L (boy) is 6 and K (girl) is almost 2. E has Asperger's ADHD and OCD, L has high functioning Autism and K is speech impaired, very delayed in all areas and though not diagnosed yet, she stims and requires a lot of special accommodating, just like her brothers.

I suppose people feel sorry for me and my husband, but I don't want anyone to. I just would love for people to be more educated about this messed up world of Autism. How there are so many degrees, variations, exceptions, labels, theories, treatment options and it's confusing. It's not just that "your kids are delayed, they act a little strange, they'll outgrow it - hopefully". Not even close, thank you very much.

My kids look completely normal and sometimes you can look at them and would never know there is anything different about them. At first. But E has no social skills and flaps his hands against his legs and in his lap very loudly. He repeats things he heard over and over (yeah, like Rainman). L gets overwhelmed, sometimes freaks out and clamps his hands over his ears and will not take them off. He babbles like a baby in some little babble language he made up and can only put together a few words at times. K still eats baby food from a jar and still drinks from a bottle because she can't tolerate much else or she gags and throws up. She screams and goes ballistic if we go anywhere where there are too many people or there is too much noise.

The two older ones still have toilet issues and need pull-ups sometimes. They ride the special bus. They're in special ed classes. They have almost no awareness of how other kids their age behave, even when they are around them. They get upset and throw screaming temper tantrums if something we see as trivial upsets them. They don't get concepts other kids much younger than them seem to understand. We don't go to movies, the zoo, museums, the beach, the library, Chuck E Cheese,anyone's home or any other place that would be certain disaster should I be brave enough to try to take just one of them there. Too much light, noise, people, excitement, activity, etc. Yes, my kids have had complete meltdowns in public. The first rule that I learned the hard way is: don't make eye contact! When my kid starts up in public and it's getting ugly, I don't make eye contact with anyone! Focus on the child and deal with it accordingly. Yes, people look and sometimes they comment. So? I deal with my kid, not the ignorant person that isn't minding their business.

This is not even all of it. See, this Autism thing, way more than any parent bargains for..

You can't just give kids like this more discipline, or expect them to suck it up and act normal, or try to distract them with a toy or video or something. This is just who my kids are and it's all I know. And as bad as this sounds, please know that my kids are the sweetest, most beautiful babies to me. They are capable of loving us, and each other. They have strengths, skills, and something to offer. They are special and unique. And sometimes, they surprise when they do or say something typical.

I do make my kids behave, apologize when they have done something they should not have, and I am teaching them manners. I will not let Autism be an excuse for my kids to get away with doing anything that would be wrong or cause harm to others..

It's hard for me to relate to parents of typical kids. I will never know what it's like to have a normal child. And I don't know what it is that caused all of mine to have this. And it's not something I can really make anyone understand if they are not going through it themselves.

I hope this blog can help anyone that would like to understand more, either for themselves because they have a child with Autism, or as someone that wants to know more because they don't.

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Perspectives of a Guilty Parent

Originally posted at Mamabusypants on April 1. Life on the Spectrum recently wrote: "Someone said that they were tired of some parents with children who have autism, painting autism as if it were some sort of cool adventure. Autism is hard, depressing and sometimes unbearable." That resonates. Mr. Busypants has mild autism, which translates into autism is only mildly a pain in my ass. Sometimes I feel guilty about his mildness. I'm stuck in the middle: my kid's not quite normal, but he's also not completely, hopelessly, overly frustratingly autistic. So while I deal with the "autistic moments," I do not deal with them at the great frequency that many others do. Initially, the diagnosis and subsequent transitions from babyhood to toddlerland to preschoolville were hard, depressing, and sometimes unbearable. But now, while Mr. Busypants is in Kindergarten at least, the challenges are not much larger than the average parents' (different, but not more overwhelming). That may change, but I feel privileged to just love his mind and the unique perspective he brings to life. At least for now, I get to see it as a cool adventure. To be honest, I fear my neuro-typical (NT) daughter, Miss Chattyshoes, drama queen that she already is, will be way harder to raise. She already has an opinion about everything. When she really, really wants something, she repeats herself, each time at a higher decibel, until only dogs in the neighborhood and the dolphins at the Brookfield Zoo are able to hear her. I'm constantly being ordered to "sit down mama," as she plants her chubby cheeks (yes, the other ones) onto the couch and pats the spot right next to her. It's often frustrating because there's an endless list of things on my To Do list (like laundry, major clean up, grading, dishes, more major clean up, Facebook), but recently I decided to fall in line with the little drill sergeant. I mean, she'll only be little once. So now I'm getting caught up on all kinds of reading. It's distracting to do my Bible study with Elmo in the background, but somehow I manage. As for Mr. Busypants, well, so far he is wildly navigating the line between having autism and being a regular kid. He has a lot going for him in that he wants to partcipate with others, but he also has obstacles less known to those who are neuro-typical. He's coping with the sensory bombardment that's magnified because he has autism, the obsessive/compulsive need for structure and repetition as he processes the world around him, and the emerging knowledge that he is indeed different. 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 Mamabusypants.

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Our Story is a Blur

As other parents recount the day that their child was diagnosed, or that moment in time where they understood something was wrong with their child, I am amazed at their power to recall the details of the time. I don't remember those details. Every day of my life since my youngest daughter's birth has been a blur. As an infant, she did not have a sleep schedule. She would be awake all night, or for hours at a time and often, she was inconsolable. We tried different formulas after breastfeeding. Nothing changed. We even had our chiropractor adjust her and there was a short lived reprieve. Maybe a day or two of sleep for the household? It is hard to remember anything other than the general. I don't remember loving this baby like I did my first. Yes, every child is different and the feelings associated are different also. But, this was....... different. The sleepless nights turned quickly to resentment and frustration and depression. Soon, we were lost in our own woes and stumped about what the baby's problem was. So, we just dealt with it. By the time she was three, my husband and I had separated. I understand this is common with parents whose children have developmental disability, but I had no idea at the time that it was a contributor to our failed marriage. When it was time for my daughter to enter pre-kindergarten, my older daughter had been doing great in school for several years, ahead of her peers in almost every subject. Everyone loved her and she was such a sweet girl. Her baby sister was almost the polar opposite. She barely spoke, had rage-full fits, and obsessive - like behaviors. I tried to explain this to the teacher at the assessments, but I didn't have the right words, because I didn't know the terms or even what they meant yet. I, along with her dad and gramma, just thought she was a little slower to come out of her shell since her big sister could (and did) help her with everything from talking to getting dressed. We simply believed it was a matter of not needing to express herself because she had someone to do it for her. At the first 9 weeks teacher meetings, we got a note requesting a special meeting. It was at this meeting that her teacher told us of her behaviors. Many of which we were familiar with, but it was still a shock to hear them explained to us from a classroom perspective. I wanted to cry. Maybe I did. Like I said before, the details are all fuzzy and run together. This teacher was kind, and I'm so grateful that she was, because without her kindness, we may have brushed her off as being a rude and pushy know it all. But, she really loved my daughter and wanted to help. She was instrumental in getting the first IEP set up and helping us to find further help for this child. Now, 2 years later, that child is still not comfortable in school. She still has lack of control over her own body and emotions. She is still rageful. It took nearly 2 years before anyone officially called her Autistic and even now, there is so much more to learn about how this disorder works. What will her life be like? Will she grow up to be a psychotic maniac, or can she possibly adjust to her environment at some point? Some adults with autism never do, and some can't. They become statistics of the system, jailed and imprisoned for their lack of control and ability to conform. Did you know that? Did you KNOW that? I'm afraid for my daughter, and I'm afraid of her. The rates are growing in relation to others like my child. I only wish I were alone. Jenn Brockman is a single mom of 2 girls, one on the autism spectrum and one with ADHD. She writes and hosts a radio program advocating for all special needs kids at Special Needs Kids Talk Radio while running her own mineral makeup business.