Asperger Mom

In December I am meeting with a consultant to talk about my plans to launch a nonprofit foundation for youth with Aspergers, Tourettes, and Obsessive Compulsive Disorder.

A strange mix of disorders you might ask? Well, these are the mix of disorders my two children have.

Both my children can grab a colored pencil and drawing pad and go into a world of safety and serenity and understanding. It is in times of anxiety that I go to this method and it has been a life saver. It is therefore my belief that art is not an amazing finished piece, but the process of being creative.

My goal for my foundation is to “Open the Door to Creativity for at-risk youth.

I have always enjoyed museums and galleries of both classical and modern art. My oldest grew up learning about and loving Monet. She always had a picture of the Japanese Bridge or Lily pads in her room. She and I have always dreamed of visiting Giverny. We are saving for a family trip to Europe.

Just this morning my little guy and I were creating at the kitchen table and he said, “Mom, someday I want to be an artist.”

I looked at him and said, “You already are!”

My plan is to have a large art studio where I may continue to do my artwork and then have Spring or Summer art retreats for youth. My daughter also suggested an art contest once a year for graduating seniors for scholarship money. These are our plans … who knows maybe some day we will be able to take a group of teens to Europe to experience some of the museums and towns were the classical artists worked.

How about your Aspie kids … are they artists and creative sorts?

One thing that has caused a great deal of heartache in our family was blending our family. When my husband and I married almost eight years ago, he had two children and I had two children. As luck would have it I didn’t have any nasty ex’s in my life, but he came with baggage and it was SIGNIFICANT baggage.

When we first introduced our mini Brady bunch, they hit it off famously. The girls were (his) ten and (hers) nine, and the boys were (his) eight and (hers) two. Being only nine months apart in age the girls hit it off right away. It was a little more difficult for the boys because of the age difference, but all was well.

FOR A WHILE…

Then the evil, jealous ex-wife reared her ugly head. In her world, if she isn’t happy, then no one may be happy. She just couldn’t accept the fact that her husband had moved on and was happy (and she was the one who had wanted the divorce.)

She tried everything possible to come between me and her children and then my husband and his children. The final straw was her filing criminal charges against my little guy: domestic violence/assault with a deadly weapon, and sexual assault.

My poor little guy had been watching their sibling interactions and was copying them. There was always a coveted position on the couch and my hubby’s son would climb behind his sister and push her with his feet until he got the position. So my little guy did this and apparently it was perceived as sexual assault when my step daughter told her mother about it.

The boys were in the kitchen cutting a piece of watermelon in two when my step daughter took the knife away from them (cutting her finger = very small cut.) This was taken as assault with a deadly weapon by the evil ex-wife when my step daughter told her mother about it.

My husband and I were in the next room when both of these incidents occurred. There had been no screaming for help or running into the next room for assistance.

Isn’t it amazing how sibling jealousy and then ex-wife jealously can turn so horribly wrong and then it be blamed on the small one in the house who has a diagnosis they think they can blame it on?

It was thrown out / charges were never filed because my son was only six years old. How can things get so blown out of proportion?

Have any of you had any issues with others who don’t understand Asperger’s?

Thanks for reading, I look forward to your comments

My ten year old has recently been in a few fights at school. He’s usually not the instigator, but once a fight erupts he feels the need to defend a friend in need. Since friendships and social skills are not his strong point he is confused about what to do in these situations. He feels very strongly that he needs to stand by his friends and help out. When he gets frustrated at home with his sister, my boys first instinct is to hit his sister.

Our boy met his best friend in Kindergarten, now six years later they are still buddies. They have their ups and downs, but have managed to stay friends over the years. His friend’s father had given him a hat and it has become his favorite hat. A bully took it and was throwing it on the ground stamping on it at recess, so my son’s friend yelled at this bully and the bully punched him. Once the fight began my son joined in to defend his best friend and a few others joined in until five boys ended up in the principals office.

Neither of our children are leaders, they both tend to be followers. I’m at a loss … how do I teach him to NOT HIT? We’ve had discussions about hitting and the that hitting is NEVER appropriate, but I’m not sure he is getting it. My husband and I don’t allow fighting video games and we monitor the computer and television. Our son loves cars, car or driving related video games … this is his obsession. So he can tell you anything about a car.

I’m just not sure where this new fighting/hitting is coming from? Anyone else have experience with fights or hitting and have any ideas or suggestions for curbing it?

As always, thanks for reading and commenting!

As mentioned in a previous post, my son has ALWAYS been very routine oriented. When there are changed to his routine it can throw him into a meltdown. When in preschool he attended the same school for three years, but changes in classrooms were EXTREMELY difficult for him. He knew all the teachers and one year his teacher even changed classes and taught him two consecutive years. None of this helped. I just figured he was just extra sensitive.

When he began Kindergarten he didn’t always play well with others and had difficulties sitting still on the carpet when they read stories, etc. I was actually told, “Your son is way below grade level.” I wondered how that was possible, I mean, he was in Kindergarten afterall! My husband and I had even paid tuition for him to go to all-day Kindergarten so he would get used to riding the bus and the routine wouldn’t change when he began first grade.

In first grade, I began asking if he had ADHD. He was evaluated and that was what we were told. The doctor prescribed a ritalin based medication and he seemed to calm, but lost his appetite and was a nightmare with major meltdowns every evening as he came down off the medications.

As he grew older we changed medications numerous times … because I wasn’t sure if his behaviors were side effects of the medications or just symptoms of his disorder (what ever that really was). After going through all the ritalin based medications and then the non-ritalin types we still didn’t know what to do!

He was on medications from first through fourth grades, but he NEVER had an appetite. He was smaller than most children in his class and very skinny. I would let him eat whatever he wanted, junk food or not, just to get him to eat … anything!

Through over two school years his pants size never changed. We only had to buy new pants because he’d warn them out and he’d grown a little taller. He also began complaining that he didn’t want to take his medicine because it made him feel like he couldn’t enjoy himself - that he felt so bored and sad all the time. THIS BROKE MY HEART. I couldn’t stand to see him zombified, especially when he was verbalizing it himself.

This past summer we took him off all meds and he did really well. His appetite picked up and he finally began to fill out. When school began he said he DID NOT want to take any medication. He is off his meds and his teacher has been very williing to work with him. We have made contracts regarding his behavior so he doesn’t disrupt the class and talk too much. If this happens his teacher will email me. Then he has a list of privileges that he must choose from to lose for four days. If we receive a second email from his teacher within the four day period, then he will lose a second privilege and the four day clock start all over. So far this has worked; I’m very thankful that our boy has a teacher who is willing to work with him and not require him to be doped up!

How about you, have any stories about trials on or off medications … what are your views?

Thanks for reading!
Jan

Have you ever said to yourself, “How will I find the strength to make it through to tomorrow?”

It’s Sunday morning and I turned on the television and HOOK was on. I believe it had just begun or hadn’t been on too long. Peter was grown, married, and had children of his own. He was busy in some acquisition and merger when his wife so profoundly reminded him, “Your children love you and want to play with you. We only have a few years when they want us around. In a few years you’ll be running after them trying to get their attention…”

It reminded me of many times when I HOPED & PRAYED that I and my son would make it through until tomorrow to see another day.

A few years back I had taken my son and a friend to see a comedy. We arrived a little early so we could get food and seats. They were running around the theater and I kept asking them to take their seats. As others arrived, the stares began. I could hear their thoughts … why can’t she control her child?

Then my boy tripped and hit his head on a cup holder. He was fussing and I said, “Let me see your head, did you hurt yourself?”

And there it was, one of his famous one-liners, “I want to go home.”

I told him we had just spent a great deal of money and his friend and I wanted to see the movie. And he said, “I am going to wait in the car.”

When I told him “NO” the meltdown began. He was on the floor crying and screaming and kicking me in the ankle. I kept scooting over one seat at a time to get away from the violent kicking that was making contact with my ankle. But he just kept coming and saying it over and over, “I want to go home.”

I finally grabbed his foot, leaned down, and said, “You will not hurt me anymore. You will take your seat and we will watch this movie.”

By this time the advertisements and previews were just about over and the movie would begin soon. My son looked over at his friend and said, “I want that seat.” Luckily, when I asked if he could scoot over and let my boy have the seat in the corner his friend complied.

Of course all was not through, they both knocked their popcorn and drink trays over and were hungry…

I gave them my drink to share … ran out and bought them a box of candy to share and we got to see the movie.

Tears ran down my face as the movie began, but hey, there’s no crying in comedies.

Ever have a moment when you have wondered if you will have the strength to make it through another day?

For some strange reason I thought it might be fun to go to Disney Land for Christmas. My Aspie son does NOT like to be around large crowds of people though. Once I took the kids up to Seattle for a day at Pike Place Market. We got out of the car on the upper level and my son saw hundreds of people milling about through the isles and he wanted nothing to do with it. My daughter really wanted to shop and enjoy herself so I tried to encourage him to give it a try. Then comes his famous one-liner: “I am going to wait in the car.”

I informed him, as usual, that waiting in the car alone was not safe and NOT an option. He began fussing and I could see it was heading to an ugly place…

Thinking quickly, I pulled him along through the crowd and we headed to the lower level. As luck would have it, there weren’t many people on the lower level. I knew of a store that sold Native American items and jewelry and hoped that this might help calm him. Still pulling him, well almost dragging him, along we made it to the store before the full fledge meltdown kicked in.

We entered the store and they were playing soft flute music and there were only two other people inside. We located a basket of Spirit Stones that seemed to intrigue him. I read to him about the stones and how animal spirits play an important role in traditional American Indian culture: land animals are protectors, sky creatures embodies spirituality and wisdom and water creatures are the healers.

My son was quite taken with these stones and loved reading that the bearer of the stones used the qualities of the spirit to create balance in their own lives. He wanted to buy some stones and thought maybe they could help him be more brave.

He selected the bear for protection, the moose for survival, and the spider for creativity. He also found a Tiger Eye stone that was a confidence stone.

I was quite impressed with his selections and bought them for him. Those stones have come in handy many times. I have reminded him that he can carry his stones in his pocket to help him feel more protected or have more confidence.

He has had many more episodes of irrational fears creeping in and preventing him from participating in activities. He almost didn’t make it to his best friends birthday party because he was afraid there would be too many people there and he wouldn’t like it. His sister reminded him of his stones and he was finally able to go to the party.

I spent a few hours this morning with my best friend and she said it quite profoundly: “I can’t imagine living in his body and not understanding the world as I do.” I’m am constantly in awe of how brave he is … it can’t be easy.

I’m always amazed and proud when he is able to overcome his fears and be brave enough to go to birthday parties or school functions. Who’d have thought that a few little stones could make the difference?

My husband, the voice of reason, helped me realize that Disney might not be the best family trip. We would spend the almost $100/person getting into the park and he might feel overwhelmed by the crowds and we might have to leave…

Maybe some day we’ll go to Disney but if not, that’s okay too.

How about you … every have one of those days when your Aspie child has not felt like being a part of the world around him/her?

As all of you with children in the Autism Spectrum Disorders know it can be very difficult to parent. I was reading through an Autism Support Website and came upon a post where a mother was ready to give up her 12 year old. I think we have all understood this desperation.

It is a hard job raising children that have disorders I have felt this way a few times and then felt mad that I felt this, but we can get through it. I know I have told my friends that I am not one of these people, but I do understand why some people beat their children. It is that shear desperation that you feel when your child is pushing your limits. It has taken a lot of work to get my children to a fairly good point. Alot of times just having someone to talk to helps.

It is REALLY important to have a good support system. I am now re-married and have a wonderfully supportive husband who, though not my childrens father, is the only Dad they have ever known. He has allowed me to get away occasionally for a break. When I was a single parent, I NEVER had that luxury.

I gave myself the most amazing gift ever - a trip all ALONE (no kids, no husband) to Italy. I took the picture of the Colosseum in Rome that is seen at the top of this blog. Therefore, Italy is where my thoughts drift to when I feel like I need to be away from my children.

Every one of us has gotten to a point that we dont think we can do it anymore because we are all human. Believe me things do get a little better if you stay on top of everything. There are times when I’ve thought I couldn’t, but I have learned that God doesn’t give us more than we can handle. He gave us these children cause he knew we could handle it and they would be safe with us. My two would probably not still be alive if they were left to grow up with their biological father.

Do you have any moments when you have felt this desperation…?

One thing that Asperger parents have to deal with is recognizing the situations or circumstances that cause their child to have a melt-down. When I recall my son’s first melt-down he was only two years old … it seems so long ago. There have been so many since they tend to blur together.

His famous first melt-down relates to his intense NEED for routine in his life. We were attempting a family camping trip. I mean, what kid doesn’t want to sleep in a tent with his parents and siblings…? Well, my little one didn’t. So he cried all night, and then screamed a little … and cried some more. We even tried climbing in the car with him so he wouldn’t wake the other children and our neighbors. Boy was this a big mistake. The car that I owned at that time had been purchased with an after market alarm system and key-less entry system. It decided to have some issues and the horn started sounding with the alarm sounds, and yes, it was the middle of the night in a crowded camping ground. My husband was able to disarm the alarm and disconnect the horn … and this was the last time we tried camping.

The next morning I was showering, and having had NO sleep, I was not in the best of moods. I overheard two women talking, “Did you hear that bratty child screaming all night long?” It was all I could do to not go running from the shower and tell them that if they thought they could do any better, they were welcome to it!

Our son’t melt-downs have tended to grow progressively as he ages and have been startling at times. Once he even punched me as we were driving down the highway since I wouldn’t do as he asked me to. I’ve learned that our boy reacts to the emotions around him and he gets confused at how to read and react to those = which triggers his melt-down.

We took a recent weekend trip out of town, I’ll hence forth refer to it as “Victoria melt trip”. Victoria Melt trip began before we ever boarded the ferry to Vancouver island. My husband was upset over a discussion he’d had with his adult daughter and my son was reacting to his confusion over dad’s emotions, then my daughter got in the mix and was having some anxieties over his brothers melt-down. It finally came to a head when we stopped for ice cream. My husband and daughter ordered ice cream cones, but our son didn’t want one we wanted something else, but was afraid dad didn’t want him to. Long story short, I ordered something else and convinced our boy it was alright. But our son dropped his on the floor … and had a total melt… My husband began losing his temper and our son’s melt-down began spiraling our of control.

In the end, I had to remind my husband that our son was reacting to his mood and that he just had to get over it! We all calmed and got in our car, boarded the ferry, and decided we were going to have a fun weekend!

So how about your, any stories to share about melt-downs where people looked at you like your child was a mis-behaved brat?

Thanks for reading, I look forward to your comments.

“It seems that for success in science and art, a dash of autism is essential.” Hans Asperger

Hans Asperger had it right, asperger kids are gifted. There may also be a more difficult side to Asperger syndrome - the one that occurs when the child doesn’t understand the world around him/her.

My youngest child has Asperger syndrome and he really struggles with his emotions, relating to other people, and understanding the world around him. He can get very angry and a little destructive when he doesn’t understand.

He is also very sweet, loving, creative and artistic. He thrives in natural settings and with animals. There is something very special about the bond between animals and Asperger children.

My husband and I have struggled for years trying to figure out how to help our children … obtaining a diagnosis can be very difficult. We have spent thousands that insurance didn’t cover trying to help our two. We were finally told the oldest has learning disabilities, Tourettes syndrome, and Obsessive Compulsive Disorder and our youngest has Asperger syndrome. They each have a great deal of anxieties and irrational fears to deal with so there are joys and triumphs as well as difficulties.

This blog is for parents who have children with Aspergers (or Tourettes and/or OCD) that want to share in their difficulties or their joys.

Thanks for reading, I hope you will post.