Asperger's in a Restaurant

Our family went out the other night to celebrate my aunt's 75th Birthday.  There were eight of us that went, three confirmed Aspies and one that is family-diagnosed.  It was a delightful, stressful event all at the same time.

To start off with, I always have to sit in a particular seat at the table.  My oldest son thinks it is funny to try and sit there before I get there.  I'm not sure exactly why he finds this funny as I find it rather irritating.  He is moved to another part of the table.

Kyle's patience is nonexistent.  He thinks as soon as he orders something, it should appear spontaneously as if by magic.  About six times I had to call him back to the table because he was headed to look for something that had been ordered that hadn't arrived yet. The funny one, funny now but not when it happened, was when he asked the waitress for a glass of water.  His exact words were, "Can I get a glass of water stat please."  I wanted to crawl under the table.  I explained to him about how that was a rude statement, he didn't understand because he heard it on a medical show and it was an okay thing to say.  So, after explaining it to him for what seemed like eternity, I think he finally understood.  I at least got him to apologize to the waitress when she came back to the table.

Sitting for any length of time has always been a challenge for Kyle.  Luckily, it was later in the evening and the restaurant was almost empty.  I did allow Kyle to leave the table because he found a quiet section in which he could spin around.  He did this for quite some time.  It was okay because he wasn't near other people and he wasn't hurting anything.  If I had forced him to stay at the table, there would have been a huge meltdown.

Dinner was great, our table was loud at times, but it was all good.  I am grateful for understanding waitresses.  Is dinner out a relaxing experience...no.  Is dinner out better than it used to be...yes, by far.  Am I looking forward to going out to a restaurant soon...maybe in a few months.

Acceptance

Most of the time I feel isolated and shunned from society. When Kyle has a meltdown in public my anxiety goes through the roof. I can handle the meltdowns at home, at school and when he has them with his therapists...everywhere else, not so much.

Picture this...you're in a room with a bunch of people, not really paying attention to anything in particular, then all of a sudden you see a child (one that is 'old enough' not to tantrum) on the floor, screaming that he was 'thrown' on the floor. Obviously this would attract the attention of anyone in a five mile radius (sometimes it feels as if he is that loud). I am surprised that the police haven't been called. I wouldn't blame them. If I was a bystander, I can only imagine what conlcusions I would jump to if I didn't know what I know by being in the situation.

He's had these exact meltdowns at gymnastics, at school, in the grocery store, in front of both of his therapists, sports, home. I think we've dealt with them pretty much everywhere.

Surprisingly I still have hair left, and a little of my sanity. How? I need to be strong for him. So what do I do when he has one of these episodes?? Well, first, if I can, I ignore them. Most of the time when he has a meltdown it is because he isn't getting what he wants, he is being forced to do something that he doesn't want to do, there has been a transition that is hard or he is seeking attention.

If I can't ignore it, I work through it with him staying very calm. It didn't take me long to figure out that if I meltdown during his meltdown it just makes it exponentially worse and I get exhausted afterwards. Everyone is upset and we get nowhere. Staying calm helps de-escalate the meltdown. It is the only thing proven to work. When the meltdown is over, it is more on a positive note and you are left with energy.

I don't worry about the meltdowns at school and at the therapist's office because they understand. I worry about the ones in the general public. I have no idea what their knowledge is regarding children and developmental issues. I have no idea whether they think I am a horrible mom. I can't jump in their minds and know what they think. I'd like to, then at least I'd know. I have a real hard time reading people too, which doesn't help.

So, most of the time I walk around on edge in public second guessing everything I do or say for fear of rejection. In the middle of meltdowns I'm rehearsing prewritten scripts explaining my child, waiting for someone to say something instead of asking if they can help.

I was approached today by another Mom, one who knows Kyle through sports and school. She wanted to let me know that she thinks that I am doing a great job with Kyle. She told me that she didn't think that she would be able to do it if it was her. She has two kids and she is a great mom. She is a hard worker, dedicated to her kids and community, I have always looked up to her and wondered how she did it. She says that she has told people that Kyle is lucky to have me as a mom. Many times I have wondered if I was a good mom because life isn't perfect. She reassured me that there are famous people with Asperger's (and named a couple) which really touched my heart. We talked for about an hour before I had to drop Caitlin off at school. I left there so happy.

When dropping Caitlin off at school I ran into a very close friend of the family who told me how great of a mom I am. Twice in one hour! I dropped Caitlin off and drove home, my eyes welled with tears. I can not express how great it was to hear these things and how great it made my day.

It's days like today that give me the added strength to go on, the reassurance that I am doing something right. It's days like today that make me feel accepted by society.

Caitlin and the Four Leaf Clovers

Ever since I was a young child, I have always had the ability to pick out a four leaf clover.  Most of the time, it was when I wasn't even looking for one.  I never understood (and still don't) why people have a hard time finding them.  To me, they looked so different among their three leaf brothers and sisters.  To me, they just stand out.

This, to me, was pretty cool enough in itself.  What is even cooler, is that my four year old daughter apparently has the same ability.  Kicking around the soccer ball, she comes running up to me, "Mom, I've found a four leaf clover!"  The first time I figured she was confused, but upon observation of her clover, she had indeed found one.  What confirmed it even more, was when she found the next one with the same amount of ease!

Admittedly, having the ability to find four leaf clovers isn't going to get you far in life, but understanding the reasons behind it are fascinating.

Caitlin had her checkup with her developmental pediatrician today.  I told him about her new-found ability.  I told him also that I had this ability as well.  I figured he would think that I was weird for mentioning such a thing as a 'talent', but he went on to say about how it relates to pattern recognition.

So far, with Caitlin's Asperger's, there have been more 'gifts' than struggles.  Her struggles socially are that she would rather be alone and that she doesn't understand social interactions, but it is something that we are working on.  Transitions and rigidity are big too, but we are working around them.  She is such a talented girl. I look forward to watching her grow and discovering her many talents.

Eosinophilic Esophagitis

So, just when you think you have everything all under control...the right medications, the right schedule, the perfect balance...life throws you another curve ball.  So, this is our current curve ball...

My views on Asperger's with my son have always been that there wasn't a food related component.  Knowing that so many in the Autism community struggle with this and special diets, I felt relieved to have something that I didn't have to deal with.  Monitoring your own diet can be stressful enough...I can only begin to imagine what managing your child's diet is like when you aren't with them all of the time.  Making sure that school, family and friends comply and that your child doesn't sneak something forbidden when you aren't watching.

My son, who is nine, consistently regurgitates food all day long.  This doesn't bother him at all.  It bothers me.  It smells horrid.  He chews it when it comes up.  I can only imagine what his friends at school think about it.  It has been noticed at school as well.

I didn't think anything major was going on.  My concerns were that it was GERD and the amount of acid that was being brought up into his esophagus.  I was worried about the damage it would cause in the long term.

The pediatrician wrote a prescription for Nexium to reduce the acid.  This didn't stop the regurgitation though.  She referred us to a pediatric gastroenterologist for further evaluation.  After the initial meeting, her thoughts were that it was most likely rumination and not GERD.  Great!  Something I hadn't heard of yet.  Something that I 'googled' as soon as I got home.  Rumination is a behavioral thing.  It is very hard to break, and you work with a behaviorist that is familiar with rumination.  Lucky (sarcasm) for us, both of his therapists aren't familiar with how to treat rumination and the closest behaviorist is forty-five minutes away and has a long waiting list.  Great.  At this point I didn't know whether it would be better to deal with GERD or rumination.

To confirm the diagnosis, he underwent an upper endoscopy.  During this procedure they took biopsies of his esophagus.  He thought it was cool because he got to see images of the inside of his esophagus, stomach and his pyloric sphincter.  I wasn't prepared for what we were told that day after the endoscopy.  It was rumination and GERD.  I left there feeling like I was in a fog.  I wasn't expecting that.

To add to it, a week later I got the results from the biopsies.  Another vocabulary word to add to the list.  I can't spell this one off the top of my head yet...lol.  The biopsies showed that he has eosinophilic esophagitis.  Say what???  I had the doctor repeat it a couple of times, figuring I could figure out how to spell it.  I had to have her spell it out for me.  Great.  Something else to 'google' after we got off the phone.

Apparently, from what the doctor told me, this means that he is having an allergic reaction to something.  It is commonly a food protein, but it could be environmental.  Not sure which one is the 'better' option.  I know for sure that it isn't celiac's disease (gluten) as they did test for that already.  So, he was prescribed medication for this.  Medication that confused our pharmacist.  I won't go into the details, but it involves swallowing liquid that is supposed to be used in a nebulizer and adding splenda to it.  He was also referred to the allergy clinic so we can determine what the allergen is.

So, now we wait for that appointment...I feel helpless because I feel like I am harming him with something he is allergic to that I can't eliminate because I don't know what it is yet.  I hope it isn't dairy because he loves his milk.  Being allergic to the milk protein is not the same as being lactose intolerant either.  I feel so bad, he is only nine.  But, we will find a way to make it through and wait for the next curve ball that life throws our way.

My Overactive Sniffer

I have always had a keen sense of smell.  Usually, this isn't a positive thing as many smells bother me.  A few times, though, it has come in handy.  I'd like to take you back to a moment from my childhood when my overactive sniffer was a blessing.

Growing up, I was basically the only kid in my extended family as all of the others lived far away.  It was me and a half dozen adults, give or take.  In many ways this was a positive thing.  This also was a negative thing.  I was just a 'kid' and hadn't been around long enough to know more than anyone else around me.

One day, at my aunt's house, I could smell something burning.  It smelled like a wood stove, only there wasn't a wood stove.  I went and told the adults, but since I was no more than ten and no one else could smell anything, my concerns were dismissed.  After a few more minutes of smelling what was definitively wood smoke, I went to tell them again.  I didn't let them dismiss my concerns this time.

They still couldn't smell what I could smell.  I led them to where I could smell it the strongest.  This was the room we call the 'Den'.  They couldn't smell it there either.  Boy was I getting aggravated.

Someone, I don't remember who, finally found the source.  Outside the door of the den, which leads to the outside, the outside light had fallen over and was burning a hole into the wood on the house.  Luckily, there wasn't any major damage, but I attribute that to early detection.  All that needed to be replaced was the light and the wood that had been burning.  If it wasn't for my nose, it could have been a lot worse.  I am also thankful that my concerns were listened to.

Now, only if my nose could always be a good thing.  There are many smells that I can not tolerate.  Flowery fragrances are horrible.  It may seem strange, but the smell of skunk doesn't bother me.  The smell of microwave popcorn...can't tolerate that one either.  I wish I knew why my nose likes certain smells and detests others.  I also wish I knew what the average sniffer was like.

An Aspergian Vacation

First of all, I would like to apologize for not writing recently.  Sorry, we have been really busy.  I have about a thousand different things that I can't wait to write about, but finding the time is hard.  I am hoping that when school starts back up I will have some more time.

What I really want to talk about is the AMAZING vacation that we went on.  My parents took us on vacation to Florida.  There were eight of us.  We drove my eight passenger Sienna there.  Keep in mind that we live in New Hampshire and Florida is approximately a twenty-four hour drive.  Also keep in mind that out of the eight passengers, three are confirmed Aspies and there is one that is definitely Aspie although it isn't officially written on paper by a qualified person.

I worried sick the weeks before our vacation.  What should have been a very exciting time was filled with excitement, anxiety, nervousness...dread.  I wondered if it was going to be a waste of my parents' money going because all I could see was disaster.  I am happy to report that it was the best time in the world and I only wish that we could have just a great time at home!  We were able to spend two great days at Epcot, one great day at Magic Kingdom, one great day at Animal Kingdom and another great day at Universal's Islands of Adventure.  We saved one day for staying in and relaxing.

So, how did we manage such a great trip?  Two simple things.  Planning and patience.  I called ahead to Disney and Universal about the special needs passes.  We used them while we were down there.  If it wasn't for these I don't think we would have been able to manage.  I also purchased some pins for us to wear.  I thought about shirts, but they are more expensive and they would need washing unlike pins.  Also, Kyle tends to wear more of his food than he eats and I didn't want him to have to worry too much about staying clean and avoiding stains.  He wore two pins (because he loved them both and couldn't choose) and I wore a pin.  My pin read, "My child has Asperger's Syndrome, your patience and understanding are appreciated."  His read, "I AM someone with Autism" and the other one was about that he wasn't trying to behave badly.  I underestimated how valuable these pins would be.  I felt at ease out in public.  I didn't feel like I had to go around and explain, or wonder if people were judging and what they were thinking.  It even sparked a few great conversations with people.  The few times we waited in lines and he started talking to the people in front and in back of us (and crossing social boundaries that would otherwise not be understood) people were accepting.  He is a very touchy-feely kid and not once was he 'pushed' away.  I think he hugged every ride operator they employ there.  Everyone really loved him. 

Caitlin also had a pin.  Hers read "Autistic Princess" and she loved it because it was pink.  We also invested in a pair of sunglasses from Disney, ones that she picked out, that she could hide behind.  Remember that Adam Sandler movie where the little boy wears sunglasses and no one can see him??  This came about at the rock climbing wall.  Kyle and Caitlin, brother and sister, both have Asperger's but it affects them in completely different ways.  Kyle is very outgoing and too in-your-face, whereas Caitlin doesn't like people and screams and kicks if you force her to. 

Kyle and Christopher were going up the rock wall and having a blast.  Caitlin wanted to so bad, but she didn't want anything to do with the guy operating the attraction.  I felt so bad because I knew she would have fun.  I was determined to get her to climb.  I finally got her to decide to go and race her brothers.  That was fine until she remembered that she still had to see that 'guy'.  My parents felt bad that I was trying to force her into something that she didn't want to do.  I told them I wanted to try.  I knew that she wanted to and she needed some coaxing, and that I wasn't being mean.  Someone suggested (I think it was my mother??) about the sunglasses, we had tried it before and it had worked.  She didn't have sunglasses with her, so she got to use her daddy's sunglasses.  We told her that nobody could see her.  It worked!!  She went up that rock wall so many times!!  She even took the sunglasses off midway through!  Right after they were done with the rock climbing wall, we headed to the first store we saw and she picked out her own magical sunglasses.

Those sunglasses worked wonders the rest of the vacation.  Many rides have height restrictions.  She refused to be measured.  Kicking and screaming.  There was no holding her.  There was no standing next to her.  After the sunglasses, she didn't mind being measured.  The good thing about the glasses was that she was able to self regulate.  She could have her glasses and put them on when she wanted to.  It worked really well.

So, my Asperger's on the trip...well, my only issue (that was noticeable to me anyway) was my sense of smell.  I can not tolerate certain smells.  They make me nauseated and give me headaches.  The ride down and back would have been more pleasant if I didn't have a sense of smell.  Fifty hours smelling a fragrance that you just can't tolerate when your sniffer is extra sensitive, doesn't make for a pleasant journey. 

For my dad and his Asperger's on the journey...well...he doesn't 'officially' have Asperger's, so I guess I can't really say that anything was...but I can still pick on him!  LOL!  (Hi, Dad!)

I have many more Asperger stories to share about this vacation, but it is almost two in the morning and I am heading to bed for now.  <3

Gastroparesis

One thing that I tend to do is to get stuck on the same thing.  The same outfit to wear, the same food to eat, et cetera.  I remember eating cooked chicken skins for dinner for forty-five days in a row, followed by another binge of macaroni and cheese and hot dogs.  Usually, I don't really care for macaroni & cheese but during this time, I couldn't get enough.  For the most part, the foods I crave are healthy.  I eat a lot of fruits and vegetables.  I eat a lot of chicken, but not a lot of other meat.

A few years ago I started losing weight but didn't know why.  I was eating healthy.  In fact, I had just started a new job in which I had a longer lunch break and I was actually able to consume a whole lunch AND have extra time.  I got hooked on salads and chicken, bacon, ranch grinders from Subway.  I ate these every day.  I even ate soup as well.  Lunch ended up being my bigger meal of the day as I wasn't too hungry by dinner time.

I went to the doctor about the weight loss and the other symptoms that I was having to try and find out why.  I didn't weigh a lot to begin with and I definitely didn't want to lose any of the weight that I had.

First off, the doctor suggested stress, depression, major lifestyle changes (new job) as the culprit.  I assured him that I was absolutely positive that wasn't the case.  He wanted me to come back in two weeks.  When I returned I had lost some more weight.  I was really worried.  the doctor wanted me to try some antidepressants.  He assured me that when I went back in two more weeks I would have not lost anymore weight and that I would eventually start to gain the weight back.  I was frustrated, but I did as I was told because he was the doctor.

I went back in two weeks.  I religiously took the antidepressants.  Still lost more weight.  By this point I had dropped under one hundred pounds.  He told me that if I dropped below ninety pounds that he would have to admit me to the hospital.  He wanted to switch the antidepressant that I was on to another antidepressant.  This made me upset because I knew this wasn't the underlying cause.  I wasn't depressed.  I was fine except the weight loss.  The only thing stressing me out was the weight loss.  I agreed to the switch in medication if he agreed to send me for a second opinion with a gastroenterologist.  I also went for a psychiatric evaluation that he wanted me to do.  That came back fine, as I knew it would.  I took the new medication and went for my evaluation with the gastroenterologist.

My first appointment with the gastroenterologist really aggravated me.  They asked me if I made myself vomit.  They asked me how I felt about my self image.  I reminded them nicely that I was the one pushing for the evaluation to get to the bottom of the issue because I was worried and that if I was doing it to myself then I wouldn't have been the one to ask for the referral.  They backed off a little saying that I fit the stereotypical profile of someone with an eating disorder, yada yada yada.  They asked me again.  I was pissed.  They went over history, diet, symptoms et cetera and suggested that they could test for things like Celiac Disease, Crohn's, IBS, among others.  I was like great, let's find out what it is.

My mom had accompanied me to the appointment.  On the way home she was starting to believe the doctors about the depression and eating disorders and such.  I reassured her that I knew there was something else going on.  I knew I would just have to wait until we had the results and hoped that I wouldn't lose too much weight before then.

The test for Celiac Disease came back negative.  Another test that I had to take was a gastric emptying scan.  I had to eat food with radioactive material in it and then have my stomach scanned every hour for four hours to see how my stomach was emptying.

The results of my test came back just as I dropped below ninety pounds.  Luckily, I didn't have to be admitted to the hospital.  I learned that I had gastroparesis.  Idiopathic gastroparesis to be exact.  I understand why this wasn't something the doctors would initially consider.  It is usually a condition that affects diabetics.  In fact, about 50% of diabetics have gastroparesis.  I am not diabetic.

To help the gastric emptying process and gain the weight back, I was put on four doses of Reglan a day.  I took that for about six months.  I do not take it now.  I am able to manage it by watching my diet.  I need to limit the amount of raw vegetables I eat (not a lot of salad) and stay away from lots of fiber.  There is more to it than just that little piece, but it is the part that bothers me the most. 

For instance...getting stuck on things...I like prunes.  I just bought a couple small bags of prunes.  I could eat the whole bag right now.  Between the three prunes I have eaten and the raw baby carrots that I have consumed this past week, I am starting to suffer from stomach pain, nausea, loss of appetite and some others that I won't mention.  This really bites because all I want to eat right now is a prune.  Prune juice is okay, but I don't care for prune juice. 

A lot of people say there is a correlation between autism and stomach issues.  I wonder if gastroparesis is one of those.  I have tried to research this online but my findings are inconclusive.  Does anyone else out there know anyone that is autistic that has gastroparesis??