Yesterday D decided to walk to Walmart some 5 miles from our home in the snow. I had told him the night before that driving would be a poor choice as schools were closed and many businesses due to the white out conditions and ice on the roads and walking paths. Despite my best efforts to change his mind or tell him defying me would have consequences he walked in his snow suit with his whellies and a pair of summer socks, shorts and short sleeve shirt. He had no hat, or gloves. After arriving at his destination he realized something was running down his legs but didn't bother to look. He finished his shopping and returned home. While removing his snow suit he realized his legs were bleeding in a circular pattern around his calves. He informed me in a matter of fact kind of way after removing his boots. I bandaged his wounds and suggested he not walk in his whellies for a while. So later that evening he snuck out of the house again when I was busy cooking dinner. Easy for him to do. He is "20" after all. I go after him this time and find him almost home from a walk to Whole Foods. This time he is wearing crocks with socks in the snow. Thankfully he doesn't seem to have frostbite, though how I can't imagine.

He's to big for me to physically stop! I try to reason with him. He just can't change his mind sometimes and thinks nothing of his quirky behavior. I reason with him as I would any client that I work with in my practice as an R.N., but he sees me as a ridiculous over protective Mother. Nothing I say seems to phase him and he continues to take risks. And the state wonders why their mortality rate is 20% in comparison to the general population.

If this isn't frightening enough for a Mother, one of our Yale family has lost their child to a freak traffic accident this past week. He was the same age as my D and someone who had a rough go in life. I ache for his Mother. I wake most mornings remembering that she wakes with the thought he is nolonger with her. I wonder if I will know her pain some day? It is not such a far stretch when things like what happened yesterday are regular occurences with my D.

I guess for now I will resign myself to rejoice in every day I have with D. I won't dwell... but plan for next time and the intervention I will try...and hope the consequences I put in place this time had some impact in the prevention of next time. Always "do what you say" as it is imperative to being effective in your parenting. It is one lesson I learned early on. Words mean a great deal to our kids. In many situations, they feel it is the law. I pray we all find the path of understanding...

Not such a good day...

D is really worked up about things right now. Never mind I started renovating his bedroom this past weekend, or that school is coming to an end, and... he's on a mission to find work.

I've been preparing D for the move to his little brother's bedroom for a few weeks as we are repairing the holes in his walls and enlarging his bedroom a few feet and adding an additional closet. Giving him a space befitting a nineteen year old. In order to accomplish this, we had to pack up every toy, sock, cardboard box and trash collectible in D's possession and store it. D's not happy. Saying that... is putting it mildly.

This morning for example; instead of o.k. Mom; I got instead a "fuck you Mom", when requesting he put his dishes in the dishwasher. He then stomped out of the room. His middle brother looks on and says to me, "you would never let me get away with that Mom." It's true I wouldn't. What parent in the right mind would tolerate that kind of behavior. Is it enabling to accept it?

I found myself explaining to D2 that his brother was under a great deal of anxiety over the idea of working and was now confronted with no place to hide, as his room was stripped to the bare walls.

I also reminded him of a conversation we had just a few years before when I told him he would someday surpass his older brother.  "Do you remember that D2?"

He did remember and is beginning to comprehend the monumentous undertaking that will have to take place for his older brother to accomplish having a job, living on his own or driving a car. D2 will take driver's education in the fall. I also reminded D2 that he would have to drive his big brother around.

Thankfully, I was blessed with a very compassionate and well educated middle son who truly gets it and sometimes even better than his Father or I do.

So what is the answer? I think setting rules for behavior and following through. As this is a new behavior for him I will have to decide how I will treat it. His Dad and I have some ideas but I'll let you know. I also think it's important not to wait, but when he's this mad...waiting is the only option. Not waiting would only escalate the inappropriate behavior.

His Dad said that after he stomped out of the room he called his Father and said I was acting crazy and yelling at him. His Dad called me and got the story and then got him on the phone and told him, "D, you can think it, but you can't say it." O.k., but that isn't solving the problem? I agree that yes we have to teach our kids that saying and thinking things are different and may help to de-escalate their feelings but we still haven't addressed the infraction.

I'll let you know what transpires in our talks tonight.

Background on the platinum magnolia image

PLATINUM 

Chemistry . a heavy, grayish-white, highly malleable andductile metallic element, resistant to most chemicals,practically unoxidizable except in the presence of bases, andfusible only at extremely high temperatures: used for makingchemical and scientific apparatus, as a catalyst in theoxidation of ammonia to nitric acid, and in jewelry. Symbol: Pt; atomic weight:  195.09; atomic number:  78; specificgravity:  21.5 at 20°C. 

MAGNOLIA
magnolia family of the order Magnoliales that contains 7 generaand 227 species, including many handsome, fragrant-floweringtrees and shrubs. Most have simple leaves and an elongatedconelike floral axis with flowers that have six tepals (sepals andpetals that are not distinctly different), many spirally arrangedstamens, and one, two, or many carpels (female reproductivestructures). The seeds of many species hang by threads from theconelike fruits. In most species the flowers are bisexual and areborne on branch tips. The long floral axis, spiral arrangement ofthe flower parts, and simple vessels (water-conducting cells) inthe wood all mark the family as a primitive one on theevolutionary scale. 

These two words put together.. to me, envision a choice and a mindset that has inspired me through some very dark moments. And here we begin....

"A Mother Who has lived with an Autistic Child for Eighteen Years"

July 18, 2012

It occurred to me today after much thought and trepidation that it is finally time to speak about a subject that has been a fight for me for some eighteen years. I want to tell you what it is like to raise my autistic child. I am not venting though it may seem so at times but rather trying to educate in a way that will help others cope with a problem that many of us face, whether they are our children, parents, or significant others. I may provide insight at times, or share feelings, or just provide some skill I picked up along the way. It is by no means meant to instruct you to follow my path and I make no judgement about your choices. My feeling is that for these many years I have walked a road that is very lonely and sometimes humiliating, but it is one I would never abandon. 

So on that somber note I'm going to begin with today's happenings.

I'm lying on my bed on this very hot July afternoon with a minor urinary tract infection. I get up, work for a bit and then lay back down to restore to begin again. I'm watching an old movie with my twelve year old son. My almost fifteen year old son is looking for the mail. He's asked both me and Dyl's my twelve year old and now he returns to the first floor to ask David my eighteen year old son who is by definition a high functioning Autistic. For some who know David they understand the picture because they talk to him, know his disorganized thoughts and strange conclusions regarding certain subjects. But if you met him off the street you would see him as an adorable very attractive young man who loves to shop, eat and chat. 

But to us, his family, we many times must walk on eggshells. We are his safety net, so when he's feeling something strongly, we will bare the brunt of his behavior. Today was one of those moments that I recognized must change in order to prevent permanent damage to my other children. 

Dave flew off the handle because Dallas ask if he had seen the mail while watching television. David's rationale for his behavior was that he was trying to learn something important. When arguing with him it is a continuous struggle to impart information as he will continually speak over you and even talk louder so that he feels heard. We always discuss that his excuses for his behavior will not be tolerated by the general public is number one because we don't want him arrested or encouraged in anyway to exhibit such behavior in public. Today, I worked on explaining that is is picking away at Dallas's love for him and his self esteem when he verbally attacks his brother. Meanwhile Dyl's is on the second floor in my bedroom listening to the attack on Dallas and me coming to his aid to prevent what has happen on occasion in the past. A full blown meltdown that results in broken walls, decorations and occasionally scraps and bruises. This behavior is never tolerated and we have a therapist that deals with Dave's behavior regularly, but  nothing happens quickly with him. It is a work in progress much like a fine work of art or a building. 

Resources I have found helpful:

Marlton Pediatrics
www.advocaredoctors.com/marltonpeds/index.aspx
Heidi Weinroth is a mother and pediatrician who has provided invaluable insight into our world. She's a Mom who's walked the walk.

Center for Family Guidance
www.ctrfamilyguidance.com
Many of the practictioners have aided us with resources for our son. They deal with people of all ages and diagnoses. A healthy mental outlook is important for the entire family, not just our loved one.

ASPEN Family Issues Chapter in Camden/Burlington Counties
www.asennj.org/chapters_camden.asp
Meet at the Katz Jewish Community Center
Springdale Rd, Cherry Hill 856-424-4444
Check out the website for meeting information and topics being discussed. A great place to find resources and learn the ropes. They discuss everything from legal issues to fighting the school system.

Parents of Autistic Children Together
www.solvingthepuzzle.com
Organization that socializes our kids and the family in a healthy environment. P.A.C.T. is a chapter of the Autism Society of America and is located in Marlton, New Jersey

Department of Human Services
http://www.state.nj.us/humanservices/ddd/home/index.html
Division of Developmental Disabilities
Apply for services, register your child with the state, find financial help and more resources.

Center for Neurological and Neurodevelopmental Health
http://www.thecnnh.org
(856) 346-0005
CNNH provides comprehensive and multidisciplinary evaluation and treatment. It is also the home of LEGO therapy. Check out the website to learn more.