Posts tagged ‘aspergers’

Just like other children my son Max wants to have friends. But unlike other children it is not easy for him to make friends. He has Bipolar Disorder, ADD, and Asperger’s. The combination causes him to be very self-involved, explosive, and unable to have normal conversations.

My wife and I are constantly setting up play dates and then praying that they work out. When they don’t the other parents suddenly become unresponsive when we call.

Lately Max has been working with a play therapist to work through his issues. He has also been seeing a child advocate who is teaching him different social and anger management skills.

We have seen some progress with his anger. Sometimes now instead of throwing things and cursing, he will lock himself away in his toy room until he calms down. He has a long way to go but it is nice to see some improvement.

But one skill he has been working on caught us off guard one day. And I must say we were surprised and excited. My wife walked over with him to his friend’s house. They found the boy playing street hockey with another friend.

Max stood at the side watching them. He said “Hi” and they responded but continued to play.

He watched a little longer and then said to the other boy, “Hey, we were in kindergarten and baseball together. How are things?”

“OK” as he continued playing.

Later Max said, “Hey, when you guys are finished playing do you want to scooter around the neighborhood?”

His friend answered, “No, I have to go in for dinner when the game is over and Bill has to go home.”

Hmm, okay, Max continued to watch, “Hey, can I play?”

“No, we are almost finished.”

After another few minutes Max said, “Well, it was nice to see you guys, I’m going to head off now.”

The other boys just grunted and continued to play.

He left with my wife and as they turned a corner she said, “Max, I’m very proud of how you handled that situation. Give me a high 5!”

After slapping hands the two stopped at another house. The two girls there were at home playing and excited that he had come over. Max turned to his mother and said, “Mommy, you don’t have to stay. I’ll be home when I am done playing.”

My wife couldn’t wait to tell me what had happened when she got home. And it excited me to hear it. Even though the other boys’ social skills left a lot to be desired we can see that Max is able to use what he is learning from his Advocate. With practice he should be able to make more friends and perhaps lessen the number of phone calls his mother and I need to make.

Sunday looked like it was going to be a good day. After church my son Max and I put together a list of jobs we would do that day. These included raking grass cuttings; planting grass in an area where a tree once stood; and finally planting Max’s garden.

After we did the raking I realized Max hadn’t had lunch yet so I took him off to the fast food joint down the street. We wanted to make it quick so we could get back to work. We took the drive-thru lane and picked up a burger.

We were gone 5 minutes but as we pulled into the driveway my wife came running. Apparently Max’s buddy at the end of our street had stopped in looking for him. He had only left a minute ago.

Max didn’t waste a second; he was on his scooter and down the driveway before we even realized he was gone. Minutes later he dragged himself back to the house; his pal was not outside. He called him only to find that plans had changed. Within moments of getting home he started playing Monopoly with his parents.

Max began to cry. Very quickly he became inconsolable. This is not like him. He never cries. If he gets hurt he grits his teeth and moves on through the pain. My wife called to find out what was really happening. Yes they were playing but at 2 pm their son would be going to his baseball game. He would be home by 4. And, oh by the way, Max can come over and watch.

Watch? My son is an “action guy”. He cannot just sit and observe other people having fun! The crying continued. For the next 3 hours it was “is it 4 yet?”

“Not yet, we have 1 hour and 50 minutes left.” Wail!

Max’s friend did not get home at 4 which started more problems. My wife decided to take him for an ice cream but he wouldn’t go because he was afraid he would miss him. I promised that if the boy showed up I would keep him here until Max got back. This mollified him and he left.

His friend actually showed up at 6:30 but he only had a half an hour. When it was time to go home Max was upset yet again but at least he finally got a little time with him.

Anyway, all of this trouble ruined the afternoon for all of us. The yard work was postponed and my wife was unable to get dinner started on time.

You see, Max has a lot of issues. He is a bipolar Aspie with adhd. Because of this he doesn’t make friends easily. Parents of “normal” kids are hesitant about letting them play with him. They aren’t sure how he is going to be with them. Quite often he ends up playing with other special needs children instead and though he likes them he really wants to be thought of as “normal”.

When an issue like this happens it is devastating for him. He takes it personally and believes that his friend really doesn’t care whether they play together or not. Which, in this case, is true. We have noticed that this boy only wants to play with Max if no one else is around. My son, on the other hand, would play with him every day if he could.

As my wife said she should not have mentioned that the boy had come over since Max and I already had plans and things were going so well. But you know even we didn’t think that this boy’s mind could have changed so quickly.

And yes, it is true, that children need to learn from disappointment but Max seems to get more than most. It would be nice if he could catch a break sometimes!

I like to talk about my son the inventor. Max is 9 years old and for years has always been putting things together to help him get around, across, and through obstacles. My wife and I are waiting for him to up with that one brilliant idea that will let us retire.

We joke about this a lot but we never thought it really could happen. You see, with all of his disorders we didn’t think he would be able to accomplish all the great things we know he is really intelligent enough to do. He has been diagnosed with ADHD, Bipolar Disorder, Asperger’s (sometimes PDD instead), ODD, OCD, and anxiety among other things.

With all of the medication he is on we have been afraid that it would stunt his mental growth. Michael Moore, the creator of many movies including “Roger and Me”, once said if his parents had put him on medication for his ADHD he doesn’t think he would have accomplished what he has.

We have a parenting counselor who meets with us each week. She helps us work through Max’s issues. We told her how he wants to go to MIT and become an inventor. When we mentioned that we didn’t think he would succeed she told us not to bet on that. He’s smart, has the capabilities, and will probably pleasantly surprise us. She has spent a lot of time at MIT and she told us that most, if not all, of the students had similar issues and had worked through them to accomplish great things.

And he keeps inventing. Just the other day he built a rainforest in the backyard. He didn’t start out doing it. All he wanted to do was fill a barrel from the hose. His plan was to put on his bathing suit and climb into it; relaxing as if it were a hot tub. Only thing was it was a cold day and the water was icy.

It wasn’t long before his mind spawned the idea of a rainforest. He took the hose and attached a smaller one to it that has a sprayer on one end and a shut off valve on the other. He then climbed up a tree high enough to hide the sprayer in the branches but also low enough to reach the valve.

When he tested his invention he was standing under the tree in his bathing suit. He flipped the switch and a fine mist began to spray downwards. The water dripped off the branches and formed puddles in the dirt.

Max declared it a rousing success but too cold. He disappeared into the house. A few minutes later he returned still in his bathing suit but he had added a yellow rain slicker and yellow rubber boots. After a retest he was elated that it was working so well.

Once all his testing was completed he began rounding up the neighborhood kids to show them what he had made. Several children stood in the back yard and watched him dance in and around the misty rain. He tried to convince them to join him but not only was it too cold and wet, none were dressed appropriately. But all liked what he had accomplished.

My wife and I are now rethinking our opinion of what Max will be able to accomplish when he grows up. We don’t want to sell him short. I actually know an inventor who graduated from MIT. I’m going to ask him if he would spend some time mentoring my son.

Who knows, as our counselor says, Max will probably surprise us!

My son Max and I spent the weekend at Battleship Cove with the Cub Scouts.  As its name implies it has a number of exhibits including a battleship, submarine, and destroyer on display in the water near the ocean.  And like a lot of museums nowadays you can schedule groups to sleep overnight to get the experience of living aboard them.

This is our third year doing it but Max still gets just as excited as the first time.  When he gets excited it can be expressed in many different ways.  For example:

• He can get excited when running.  Like other children that have Asperger’s this can be manifested by flapping his arms.  I used to try to teach him to hold them close to his body and pump them the way that regular kids do it.  Since I have learned about the syndrome I have backed off doing this.  However, I have noticed he will switch back and forth between flapping and pumping his arms depending on the mood he is in.

• He can get very excited when he is wrestling with his friends.  But as his anxiety levels increase it can turn to upset.  When this happens his face gets red and he looks like he is going to cry.  Then he becomes violent.  His excitement transforms into anger and he is ready to beat the other person down.  This is when we have to step in and separate them.

• At other times when he discovers things that really interest him he really, and I mean really wants to show people what he has found.  And he will harass them until they come to look.  Interestingly enough he doesn’t care how excited they get; they can even be annoyed, but at least they have witnessed what he has found.  At the Cove no one was safe.  Every time he turned around there was something else to cause excitement and there were 600 people to badger.

Through trial and error my wife and I have figured out some of the triggers for his excitement and the results to expect.  But there is always something new.  Right now he is building a ship in the backyard with his advocate.  This is his project du jour.  And as he works he keeps thinking of something new to add to it.

First was the saw.  He came running in talking very quickly.  His words fell over each other as he tried to ask if he could use it.  Why?  After much prompting I discovered that he found a long piece of wood that he wants to make into a gang plank for the ship.  Well, it is okay with me if his advocate is willing to supervise.  Upset.  He heard a “No” when I said that.  In the end she said yes and he got the saw.

After he cut the wood he wanted the drill.  What could he possibly want the drill for?  Screws.  Um, I can’t work with just one word.  What is he going to use the screws for?  To make a long story short I never really found out but we didn’t have any.  Upset.  But he finally settled for nails so I listened to hammering for quite some time.

Next he wanted our wooden flag pole.  I can’t get a straight answer why he wants it.  This time I said “No”.  Of course there was more upset.  Finally, when all was said and done he got the pole.  It turns out he wasn’t going to cut it, hammer it, or damage it in any way.  There is a hole in the center of the table on the back deck.  It holds the umbrella we use during the summer months.  This is where he put the pole after attaching the flag to it.

One thing about Max though.  Once he has completed a project or shown other people the things that excite him he forgets about them and moves on to something else.  But unfortunately, in the meantime, we can get upset or annoyed or frustrated especially if he is handling his excitement in a new way.

Asperger’s is a whole new world for us, as it is for a lot of other people.  Every time we think we understand what is going on with Max, something else appears and we learn yet a new lesson.  It can be exhausting but it is also nice when we figure out another way to help him through his excitements and upsets.

My son Max is a Cub Scout.  He has been one for 3 years now, moving up the ranks from Tiger to Bobcat to Wolf and now Bear.  I find this amazing.

Amazing because I never thought that he would get this far.  Yes, like other kids he dreams about going through Cub Scouts.  Then when he gets older going into Boy Scouts, Explorer Scouts, and eventually join the Army.

Initially we saw this as a great dream.  I had wanted to be a Cub Scout myself but it never happened.  I was a Boy Scout however, so I knew what he could get out of it.

Even better, I also knew that I would be going to the meetings with him and camping out with him and doing the activities with him.  Seemed like a win-win situation to me.

Ahhh, but reality can really throw some curve balls.  The year he joined was the year that his disorders began to get involved with everything he did.  I’ve posted about his problems at school and his hospital visits but I haven’t mentioned his scout meetings.  He would be wild, running, jumping, and climbing the pillars in the meeting hall.

Not only did the pack leader have to speak to me several times about his behavior we also missed quite a few meetings when he was in the hospital or was too uncontrollable to leave the house.

And then there were the campouts; he would be so excited he would still be talking at 2 a.m.  He would still be having meltdowns at 6 a.m.

Somehow through all of this he was able to collect activity and elective beads, and move from Tiger to Bobcat and on to Wolf.  For those who don’t know, Bobcat is an interim rank; Wolf is second year.  That year I worried and hovered a lot.  He was also very clingy and would sit in the back of the room with me rather than join in with the other scouts.  But at home he would tackle the electives with glee and ended up accomplishing more than his den mates.

This year he is a Bear.  It has been an exciting year for both of us.  From September to January I watched him slowly become more involved with the den and pack activities.  He is making friends and is not as clingy.  Today he will sit right up front with the rest of the boys and actually forgets that I am even there sometimes.

Even on museum overnights and campouts he will take off with his friends and I generally don’t have to worry about him.  I do though because I keep thinking he might relapse; get to wild; or even lose his temper and start hitting.

Max has been taking part in the activities this year.  He liked learning how to carve a bear out of soap.  He has been part of flag ceremonies and building models.

He has also been working on his electives and collecting arrowhead rewards.  The nice thing about these is that they are things that he does anyway so now he gets credit too.  He has built different electronic projects such as door bells and radios.

Right now he is working on his swimming belt loop and pin.  In a way this is an easy one.  He has been in the water since he was 6 months old, 8 and a half years.  We go swimming every Tuesday and Thursday too.  As a result he has basically whipped through all of the requirements and he is excited.

His only disappointment was that he wanted his snowboarding belt loop and pin this year too.  Unfortunately we had more rain than snow so he wasn’t able to complete everything he needed.  Well, there is always next year.

So I have been doing a lot of learning too.  I’ve discovered that just because Max has disorders such as asperger’s, bipolar, and adhd, none of these can or should keep him down.  He is able to learn just like every other kid.  He is able to have fun too.

And Dad doesn’t have to keep being an old mother hen hovering around him to protect him or keep him out of trouble.  He is learning how to do that himself.

“Who are you?”

“My name is Goatbelly”.

It was obvious that this weird little man before me was a leprechaun.  He had black patent leather shoes on under a pair of yellow trousers.  Over that was a long knee-length green coat with a gold zipper to hold it closed and white cuffs and collar.  On his head he wore a green derby and on his forehead was a shamrock.

He did a little jig for me but refused to come close.  You see, I am human and we are known to capture the wee folk and insist on a pot of gold to let them go free.  I leapt out of my office chair and chased him through the house.  I caught him in the back yard and insisted on my prize.  He struggled a little before promising to lead me to its hiding place but as we went across the lawn he escaped into the bushes.

I’m not as dumb as I seem and I was able to get the drop on him as he emerged from a different location.  This time he brought me to his secret hideout and handed over the gold.  It was contained in an old chest left over from his pirate days.  As I took it and let him go he laughed and skipped away.

“The gold is now gone; ye chest is empty!”  I shook it but could hear rattling, “What ye hear is the memory; the gold has disappeared.”

I frowned and said “Okay, so since a Leprechaun’s job is to make shoes, how about making me a pair.”

He came to me and pointed to my feet, “There you go, brand new shoes.”  But sadly, they looked like the ones I came in with.

We spent the next half hour playing “elf ball”.  This was a lot like “dodge ball” with a little bit of war thrown in.  After that it was “fairy ball”.  This was a cross between soccer, baseball, and golf.  The mailman had a good laugh as he watched us play.

Then just after his play therapist arrived the leprechaun changed into his green basketball shirt ready to enjoy the warm weather.

This is my son Max.  He is 8 years old and has a powerful imagination which he puts to good use in his many projects and outdoor activities.  But as you would find if you spent a lot of time with him his thoughts are fleeting.  Before 8 o’clock on a Saturday morning he can go through 10 costumes and they can be as simple as his basketball shirt, football gear, or even his baseball uniform.  They can also be as complicated as his soldier uniform, grim reaper outfit, and of course, his leprechaun suit on St Patrick’s day.  At Christmas he is Santa Claus and Thanksgiving wouldn’t be the same without a pilgrim showing up on our doorstep.

And quite often when there are no ready-made costumes to fuel his imagination he will make his own.

These changes of clothing are so important to his life that not long after he starts a new school they adopt a “no costume” rule.  This is because they find it to be too distracting to the other children.  I don’t see a problem but there was a time I was a little nervous about him going places in costume.

This seems to be one symptom of his Aspergers.  I’ve noticed that so many Aspergers adults have either made costumes for themselves or others, or even worked in costume shops.  One article calls Aspergers “the Eccentric Child Syndrome” and “they dress according to comfort and not style, and their preference in clothes often adds to their oddness”.  Temple Grandin, Ph.D. is quoted in the article as saying “If you cured Asperger’s, you would have no musicians, you would have no scientists,” she adds. “[You would have no] famous people like Mozart, Van Gogh, Darwin, Carl Sagan, Thomas Jefferson, Einstein.”

I love my son’s imagination, his intelligence, and his quirkiness.  And you know what?  I am just as likely to dress up with Max and join in his games.

And today I was the silly human only interested in his gold.

Have you seen the new show “Parenthood” yet?  Well, technically it is not a new show.  It was originally a movie by Ron Howard that came out in the 1980s.  It was later turned into a series starring Robert Townsend.  Now Ron Howard has brought it back again, this time starting Peter Krause (from Dirty Sexy Money and Six Feet Under) and Lauren Graham (from The Gilmore Girls).  It is about a family whose siblings bond over the trials and tribulations of raising their respective children.

My wife and I saw the pilot the other night and discovered yet another show to add to our limited television watching.  The part that grabbed our attention the most and a lot of discussion was the discovery that the older sibling’s (Peter Krause) son has Asperger’s Syndrome.  It started with the child, who appears about 9 or 10, having trouble in school and subsequently being diagnosed by a psychiatrist.

The steps they go through mirror those that a lot of families experience, including us.  The mom meets up with her husband and tearfully gives him the news.  He immediately denies that there is a problem; but she obviously has accepted the situation and begs him not to let her go through this journey alone.  He finally gets it when he sees how his son interacts with his classmates.  Though the boy knows that they are trying to communicate with him he shrugs it off as meaningless focused only on his immediate concerns.

Later when the grandfather (Craig T. Nelson) tries to get the boy involved in activities the father responds by saying sadly “Dad, there is something wrong with my son;  I’m going to need your help.”  I sat there thinking “Dad where are you?  I need your help”.  My son Max has been diagnosed with bipolar disorder, aspergers, and adhd..  My dad passed away in 1985.

My wife commented that the family should have known there was something wrong at least with the boy several years before the situation at school.  Certainly we knew there were issues when Max was 2 though we didn’t know what; he is 8 now.  This family seemed very surprised and yet my wife and I both knew there was something wrong with that boy at the beginning of the show.  Coincidentally his name is Max too.

Perhaps they should have known earlier but my thought is that they were both in denial.  I certainly was; but my wife has this sense about things related to health.  I have learned to trust her judgment.  Frankly, however, I think I still have some denial.  I was reading an article yesterday that was called “Misdiagnosis of Bipolar disorder” and my first thought was that maybe Max has not been diagnosed correctly.  Perhaps not but this story was more about how a lot people who actually have the disorder can be diagnosed incorrectly with other conditions.  It seems like Bipolar scares me more than aspergers and adhd so I would rather my son didn’t have it.  Actually, I’d rather he was so-called “normal”; I know other parents want the same for their kids too.

I hope the show, with all the different storylines, will not forget about their Aspie child and continue to bring us updates on his condition.