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??

My Secret

I may as well reveal another piece of information to help you understand my story.  I am on the autism spectrum as well.  It wasn't until adulthood that I was diagnosed, but I have struggled all of my life dealing with something that I didn't know I had.

First of all, let us talk about focus.  At any given point in my life I have always had something to hyper-focus on.  Playing music, progressing at the bank, the three hours I spent watching and then researching this praying mantis that caught my eye...if it sparks my interest I need to know all about it.  If it is something that I could care less about, forget it.  I dislike reading but have read almost every good book about autism because I wanted to learn everything that I could.  Television to me primarily exists to learn about animals and other non-fiction topics.  Except for the History Channel...never really liked history.  Drives me nuts when the television is on for an extended period of time without any valuable content.  Doesn't sound all too bad, does it?

Let me talk about some of my quirky behaviors and 'things'.  First of all, thankfully I have a husband that will do the dishes.  I can not for the life of me touch a dirty dish.  It feels horrible.  Saliva, I can't stand the smell of it.  The sound of someone drinking is like fingernails on a chalkboard.  I always have to walk with Craig on my left.  I have a keen sense of smell and find it almost intolerable to smell things I dislike.  Strong perfumes and flower scented candles are horrible.  I can't stand cigarette smoke either, but that is just disgusting anyway.  I use the same shampoo, conditioner, soap, deodorant et cetera because I don't like dealing with the different smells.  The other day I bought new shampoo and conditioner and I decided to try a cheaper selection but I couldn't get over the different smell.  This is a very small list of things that, well, I dunno, are normal for me but apparently others find odd.

Also, I think I appear to be a 'normal' looking person and don't really ever notice that I am not.  I am happy with myself so I don't notice things all too much, but today, for instance, something popped out to me again.  I was waiting at the kids' gymnastics class, among a bunch of other moms.  I was quietly sitting on the couch reading a book about another family's story on autism, trying to blend into my surroundings as the moms were gathering in front of the observation window anticipating the end of class, when I noticed their feet.  Which prompted me to inspect their hair, dress, makeup, et cetera.  Apparently all of these moms just had pedicures, dressed the same, stylish flip flops, pants and shirt.  Hair done as if they had just walked out of a beauty parlor and about all were wearing make up.  They were all gathered together, talking, looked the same.  They seemed nice.  Part of me envied them.  Part of me wondered why they weren't including me in their conversations, but if they were to talk to me I wouldn't know what to say.  Maybe they all went to school together?  One mom that was sitting on the couch next to me did attempt conversing with me.  She asked me how old my kids were.  I asked her the same back because that is what the polite thing is to do.  I was grateful for the conversation, but didn't know how to keep it going.  The easiest thing for me to do was to hide behind my book and blend into the couch.  Is it me?  Am I not approachable?  I am never mean or rude to anyone, as far as I know, I don't mean to be and haven't been told that I was.  My anxiety would take over anyway and I wouldn't be able to function.

I've worn makeup maybe six days out of my whole life.  I don't have long enough fingernails or toenails to worry about painting.  I wash my hair in the shower and don't brush it until I am in the car.  I don't shower until right before I leave the house, but shower I must before I leave.  I can't go into Subway because I can't stand the smell.  Going into one would require that I shower immediately after.  I do love their grinders, though.  I wear what I like and what feels comfortable.  I have exactly one pair of jeans that I can tolerate wearing.  

I have a lot of anxiety.  Mainly, I want to know what people think of me.  Honestly, no sugar coating.  I am not good at reading in between the lines, but I am totally happy with direct, straightforward information.  If I am confused by something, I am not afraid to ask.  Likewise, anything I say to you is complete honesty.  I don't see the point in telling untruths.  If you ask me if I like your haircut, and I don't, what purpose does it do if I tell you it looks great?  What I think about your haircut doesn't matter anyway because I'm not the one who has to wear it.  If you like it, all is good.  If you dislike it, go get it fixed.

Socially, I love spending time with my family.  I don't have the anxiety I do when I am with other people.  Everytime I am at playgroup, storytime, gymnastics, baseball...I am riddled with anxiety.  I just recently went back on my anxiety medication and it seems to be helping a little bit, but it doesn't want me to go 'hang out' with zillions of people.  It helps me get through what I need to.

Parenting...how does this affect my parenting?  Well, housework could use a lot of improvement.  That is something that I am not interested in at all.  The kids?  I love them so much and they are the source of my focus right now.  I would say I am an A+ mom.  Sometimes I feel that because I am the same as the two on the spectrum, I can see where they are coming from and understand them a bit more, but most of the time I feel as if I am in a world of my own and each of them in theirs.  I am so focused on their lives and their growth that I lose track of myself.  This is becoming more apparent as time goes on.  In less than a year and a half Caitlin will be in kindergarten.  All of the kids will be in school.  Time to focus on myself and my career.  But that is the thing, I feel lost.

My last career, not my last job, was at the bank.  I hyper-focused on my work (to the exclusion of family) and grew in the company faster than anyone prior.  Being at the bank for just three years with no prior banking experience, I was promoted to Branch President of another branch.  My lending ratings and reviews were among the top few of the company.  My only shortfall was managing people.  I couldn't understand (and still can't) understand why others don't have the same drive and focus that I do.  I never understood why some people could get away with things that others couldn't.  And why were there rules if they weren't enforced?  I couldn't understand the social piece...I can't even explain it now.  I didn't want to be a babysitter.

I loved the bank.  I loved the customers.  Everything came easy, except the managing part.  Do I want to get back into banking when it is time to go back to work?  Probably not.  But what am I cut out to do?  I am a gifted musician, so I've been told, but my anxiety gets in the way.  Also, I am a perfectionist and hear every little mistake I make.  I always want to improve whatever it is that I am doing to the point that I find perfection.  Music isn't going to be that for me.  I like to play the piano for relaxation.  I sing because I enjoy it.  I play the flute because it is fun.  I don't want these pleasures to become my job.  I want them to be my refuge.

So, now I am stuck with nothing.  I love science.  Math and English are okay as well.  But what do I want to do?  I would like to go back to school, but first I have to decided what to study.  To decide that I have to take into consideration my 'unique makeup of abilities and disabilities' as my psychiatrist put it.  This is the first time in my life that I have felt lost.

Asperger's in Public

On Sunday we went to a local wildlife festival.  They hold this once a year and it is a very fun place to take the kids.  Everyone was excited to go, especially Kyle.

We arrived early but still had to park quite a bit away from the event.  As we walked towards the entrance we came up to a presentation going on about turtles.  A group of about thirty people were listening to the leader talk about turtles and watching him remove a couple painted turtles that he caught in the trap.  Kyle was so excited but very frustrated.  He loudly was proclaiming to everyone that he couldn't see and tried barging through the cluster to get a closer look.  I took him aside and tried explaining to him that he would get a chance to see and that these people were trying to listen to what the gentleman had to say about the turtles.  The rest of the world did not matter to Kyle, so I decided to keep on walking so that way the crowd could continue to enjoy the presentation.

We made it to the entrance, paid the admission, then set out to decide what we were going to check out first.  We followed Kyle in the direction he wanted to go to.  It was a presentation on creepy crawlers.  As we were heading in that direction we came upon another cluster around a huge tortoise.  Kyle runs up to start touching it...complete disregard to the people that were posing with it for a picture.  I came up right behind Kyle and explained that there was a line and that these people were trying to pose for a photograph.  To him, it was only Kyle and the tortoise in the world at that moment and that was all that mattered.  I gently removed Kyle from the tortoise.  The gentleman that was patiently waiting to take the picture of his family smiled and said 'thank you' which is always nice to see and hear.  As I was 'removing' Kyle from the tortoise he was loudly yelling, pulling away from me and causing a scene.  I tried holding his hand and he kept throwing himself on the ground.  I stood there in line bear hugging him (he likes deep pressure) trying to calm him and explaining that he would get a chance to touch the tortoise but that we had to be respectful to the people that were waiting before us.  The wait was literally only a minute, but the temper tantrum lasted the whole time.  No one said anything to me, but their looks said it all.  I usually don't speak up, but one lady was really bothering me with her looks so I said unapologetically, "Sorry.  My son has Asperger's."  She didn't respond but she stopped her staring.

I don't like situations like this.  Talking with Kyle's psychiatrist she said that there really isn't anything you can do about it but have a thick skin.  I agree with this, but wish that it wasn't that way.  I feel like the easiest thing to do (but obviously not something I would do) when I go anywhere is to make a public announcement so that way everyone is aware of the situation.  My son doesn't look any different than anyone else, but that doesn't mean that the struggles aren't there.

After the first hour, the rest of the day went rather well.  We actually were able to stay there five hours because things went that great.  After the initial excitement wore off, Kyle was more receptive to my instructions.  'More receptive' does not mean that we didn't have anymore meltdowns, just that they weren't as severe.

Also, if you are even thinking of suggesting that maybe this isn't somewhere to take my child...don't even say it.  Not only does my child have the right to be there and have as much fun as everyone else, how else is he supposed to learn?  All of these struggles are learning moments.  Learning for Kyle, myself and any bystanders.  How can anyone be expected to know how to stand in a line without doing it a couple of times?  It might just take my child a few hundred more times than the 'normal' child to do so.  But, I bet those 'normal' kids don't know half the stuff that my child does.  :) 

Two Aspies and a Museum

This week is Kyle's school vacation.  Monday, we took a trip to the Montshire Museum, one of the kids' favorite places to go.  Kyle's therapist was going to meet us a little after we got there.  I wanted the kids to partake in the sound activity at 11:00, which was starting just after our arrival, so we went in and went upstairs to the activity.  I managed to dodge the meltdowns about who got to check us in and who got to pass out the admission stickers by planning a little ahead.  Usually, I let one child show the membership card, one child show my license and the third child pass out the stickers.  Passing out the stickers usually ends up in a fight about people wanting to take their own, or it wasn't put in the 'right' place, et cetera.  I preemtped this whole situation because we didn't have a lot of time and told them that I was going to check us in and hand out the stickers and if that didn't work we weren't going to go.  Things went smooth.  You may wonder why I just don't do that every time.  That would be the easiest thing for me anyway.  I let them get involved and take on different tasks so that way they can learn to take turns and learn the process of what to do when you get there.  I take the 'hard' route in many situations like this.  How do I expect the kids to learn if they are not involved??

So, the activity was about sound.  The kids learned about sound and how you hear.  Then they had the chance to make noise makers out of straws.  It basically looks like a long oboe reed when you are done.  This activity involved straws and scissors.  Lucky for me the straws had different color stripes on and the scissors varied in color as well.  Caitlin was handed a green straw and Kyle was handed a red straw.  Christopher was fine with his yellow straw, but I had to convince Kyle and Caitlin that it was okay that they had green and red straws and stop them from asking for a different color.  Same thing with the scissors.  Apparently they don't have the 'correct' color scissors either.  Oh my goodness.  If you think I may have lost it by this point, it gets even better.  We were instructed to flatten one end of the straw and cut the corners off.  I tried explaining to Caitlin what we had to do and I also showed her that we did the same to her brother's straw.  I cut the straw for her and she had a fit!  "Mommy!! (big mean frown) It's all your fault!" She carried on and on about how she didn't want her straw cut (the straw she didn't want anyway because it was the wrong color)...I tried to show her how it worked by blowing into it and she just didn't care.

This whole thing lasted only about fifteen minutes.  Out the window I saw Kyle's therapist show up and told the kids we needed to go downstairs to meet her.  They complied, but I had to listen to Caitlin the whole way about the color of her straw and how it was my fault.  She even stormed off to the coat room and protested, thinking that she would end up with the 'right' straw.  She didn't.  And...we did end up having rather a fun day even with a few scenarios like the one I talked about.

Summer School

This morning marked another IEP meeting.  Looking back, the journey it took to get an IEP and the years of struggles along the way was all worth it now.  Kyle's IEP team is great.  It is nice to leave a school meeting refreshed now, instead of frustrated and furious.  Now it is just meeting a tweaking accommodations and supports that are in place.  Also, since we are rapidly approaching the end of the school year, it was time to discuss the possibility of summer school.

Kyle's academic level does not qualify him for academic summer school, but they felt that he qualified for summer school for social skills.  We had discussed this briefly a couple of months ago and I have been struggling with my opinions since.

We do a lot of 'stuff' during the summer that we just aren't able to do during the school year.  We basically live at the Montshire Museum of Science and Six Flags.  Who has time to fit in summer school?  Sending him to summer school would take away from my time with him.  But then again...I have to remember that it is his time, not mine, and that I mainly needed to look at what was best for him.

I also talked with Kyle about summer school.  To my amazement he was excited.  Seriously?  What kid wants to go to summer school?  Apparently mine.  So, I went to the meeting with an open mind.

Summer school for social skills is held four days a week just for half a day.  They do a variety of things in this group.  For instance, Mondays they plan on what they are going to prepare for lunch on Tuesday, they compile a shopping list, split it among the group and take off to the grocery store.  They are responsible for locating the items, asking the appropriate person for help when needed and paying for the items and making sure they have the correct change.  They also incorporate in the program bal-a-vis-x which I just learned about today and sounds wonderful.  Here's the link http://www.bal-a-vis-x.com/whobenifits.htm

Summer school runs for five weeks, in which one of those weeks we will be in Florida, so he really is only going for four weeks.  I could take up pages and pages writing about all of the positive aspects of this program but I'll save it for outside discussion if you would like to know more. 

One other added benefit is that Kyle is going to take the bus.  Currently Kyle is dropped off and picked up at school by us.  We are not required to do this, the bus stops right near our house, but a few years ago he was having difficulty on the bus and it was just easier all around to pick him up and drop him off.  This summer he will ride the bus with less people and can hopefully transition to regular school transportation next year.  He will probably still need to be placed behind the bus driver, but it will be that much more social exposure that he gets.

This is such a great opportunity for Kyle that I am glad he is able to participate it.  I will definitely blog about how the program goes this summer.  <3

My Second Child on the Spectrum

Writing this, only hours have passed since getting my daughter's Asperger's diagnosis.  Every post that I have written so far has been about my son.  Starting today, I will write about my daughter as well.

My daughter, she just turned four in January, is the happiest, calmest little gal you will every meet.  Always singing, loves spinning dresses, cats, princesses...the typical girl.  What started concerning me was the lack of wanting to play with other children her same age.  I assumed that it was because she is home with me and her brother all of the time and is lacking that social piece that you get from being at daycare or school.  She was at a great daycare for two and a half years before I decided to stay home.

When I decided to stay home I decided not to stay home.  Sounds contradicting?  Well, although I get to "stay home" with the kids, "at home" is rarely where we are.  Between playgroups, story times, gymnastics, lego club, sports...we are never home!  I know that social development is so important that I knew they needed more than me in their lives.

Learning about Kyle and his diagnosis of Asperger's (something I had never heard about until like three years ago) I found it very important to research everything I could about the spectrum.  One piece I learned was that it is diagnosed more in boys than girls and one reason for this is that girls have different ways of showing it.  The little hints I was getting from Caitlin, my wonderful little girl, I first passed off as paranoia.  The lack of social progression I passed off as that she was the baby of the family and that she "stays at home" with me.  I started to become worried, spoke with the pediatrician (who was equally, if not more concerned) and then she was evaluated by child development doctors.  They were very glad that I listened to my instincts instead of passing them off.

So, I was sitting in the room (Caitlin was hiding in the corner) when they went over the evaluations.  I answered a few questions they wanted to clarify, and then they gave me the diagnosis.  The process was so fast compared to my son (that took years of evaluating, but there is more going on with the ADHD piece with that too) that I really wasn't expecting an answer today.  But when they delivered it, it was like my heart sank.  I can't even begin to express all of the emotions that went through my body.  I was sad for her, happy that I listened to my instincts, relieved that it is something that we can work on, guilt because I feel that it is my fault somehow.  Guilt, I know that I didn't cause it, but it is my genetics that have caused it.  I had contemplated whether or not to have two more kids down the road.  Well, 66.67% of my biological children are on the spectrum...so chances are if I had more, they would be too.  I am not saying it is a negative thing to be on the spectrum, but it takes extra time, effort, patience, and money to care for kids on the spectrum and how much time will I have to devote to all of my kids and make sure that I am meeting everyone's needs, including my own?  I am not able to answer this now but it is on my mind.

The car ride home...I took the long way.  Nice pleasant backroads.  I was able to breathe, chill, cry, without the rush of the interstate traffic.  I made some phone calls, but I lost service for a big part which I think was a good thing because it let my brain just mellow out.  Writing this, I still feel like I am in a fog.

So, today is day one.  Tomorrow is another day.  What I have learned from today will help to make tomorrow even better.

Something Simple That Made My Day

About a week ago I got a text from my husband.  He drops Kyle off at school in the morning.  The drop off place at school is in the lower parking lot, a little bit away from school.  The walk isn't bad at all, but on a rainy morning like it was this particular day, it seems a lot longer.

It takes a lot of effort (both on our part and on Kyle's part) to make sure that he has everything for school every day.  Things like homework, shoes, boots, snowpants, hats, gloves...the list goes on.  For the most part, we try to leave things at school so that way we don't have to worry about them.  But, sometimes things find a way back home and then we have to remember to send them back.  It doesn't sound like a big issue...but believe me, it is!  So, the one thing that we don't even bother sending, is an umbrella.  When it rains, they have indoor recess.  The only time he is outside on these rainy days is when my husband drops him off and I pick him up.  (The reason why he doesn't ride the bus is a separate story in itself)

So, back this particular rainy day...

My husband dropped him off down in the lower lot.  Poor little guy was going to have to walk all the way up in the rain.  Well, there was this girl who was headed up to school as well.  She had am umbrella.  She asked Kyle if he would like to share her umbrella.  So, they walked up to school together, sharing the umbrella.  This may not seem like a big deal, but to me it is so big.  It shows me that kids are caring.  It shows me that kids have compassion.  It shows me that there is hope for Kyle and his social relationships.  When I read the message from my husband, I cried a few tears.  Those were some of the happy tears that I have shed in this journey with Kyle.

The Journey and the Emotions

I have heard a common phrase that is used by parents after they learn that their child is on the spectrum. That they "mourn the loss of their child". I am not saying that this isn't the case with these parents, but it was quite different for me.

Kyle has always been the same, we never lost anything. He has Asperger's Syndrome and never lost any of his abilities, speech was never an issue. I still have huge hopes and dreams for him. I know that he can be whatever he wants to be. For him, there will just be a few more hurdles along the way.

I admit, every time I read the letter from the doctor which states his diagnosis, I can't help but cry. The tears come from a place inside that confirms something I had known since before he was three. I no longer feel that I was a bad parent. I praise myself for never giving up. There were many times giving up seemed easier. The fighter in me always won.

I knew there was something 'unique' about Kyle long before he turned three. The endless spinning in circles, running...the constant battles. ADHD crossed my mind. At his three year checkup I told his pediatrician about my concerns. He blew me off and said they wait until school to deal with that. I wanted whatever it was to be under control by school.

When he was three and a half I married my husband. My mom was at my wedding and was in charge of watching Kyle. She feels that she missed my wedding. Kyle kept taking off, running outside of the reception hall, constantly. After having two more little ones, it is clear how severe this was. (I was thinking of this day recently because I was scanning some wedding pictures on the computer)

By the time Kyle was four, things weren't getting better. The terrible twos never left. At his annual checkup I refused to leave without being referred. We were referred to one psychologist who met with all of us and performed many tests on Kyle. He was then diagnosed with moderate to severe ADHD-HI and ODD. Finally, we knew what was going on and could go from there.

Behavioral therapy, family counseling and a trial of every ADHD medication offered little relief. Along the way we switched therapists. The place we go to now is great. Shortly after working with them with the ADHD and behavioral therapy, they asked me if anyone ever mentioned Asperger's to me. I had never heard of that term before. They went on to explain what it was, and it was if they were describing my child. They wanted him to be evaluated in depth to make sure that it wasn't just severe ADHD. He received the provisional diagnosis of Asperger's in first grade. A year and a half later he received the definitive diagnosis. When I discussed this with his first grade teacher (first grade was a very rough year for him) she said she had wondered if he was.

Now, we are finishing the last leg of third grade. We still have our hurdles, battles and sensory issues. Changes in routine, transitions, impulsivity, safety and social issues are the main things we have issues with. But, along with that, we have the support of the IEP, our knowledge and acceptance of his condition, and his classmates that are more accepting of him now that they know. He also has two therapists, the best I have ever met, that work with him one on one and in small social groups. He also participates in numerous extracurricular activities that help with his social growth and also keep him active. Boy does he have a lot of energy!

How do I keep sane? I'm one tough cookie! I am just thankful that I pushed along. Never doubt your gut instinct. I also have a five year old son and a four year old daughter that are neurotypical. They act "appropriately" like neurotypical kids are "supposed" to act. That, to me, confirms that I am not a bad parent. The higher power, known to most as God, gave Kyle to me because he knew that I would do the best for him. He knows that Kyle is in the best place. My kids are my world. I love each of them for who they are.

Car Ride With My Aspie

Spending any significant time in a car with any child can be an experience. I just wanted to take a moment to share the experience that I had this morning.

I woke Kyle up at 6:30, earlier than normal, in order to get ready and meet the group he goes snowboarding with. The normal battles of getting ready in the morning were the same. He knew that we had to leave by 7:30. At 7:30 he started freaking out at me because we were supposed to be leaving. I was just finishing up a quick bite of breakfast before heading out the door. I reassured him that we would be leaving in "just a minute" which I literally felt would be accomplished. He didn't like that answer, and for the next minute, I spent reassuring him that everything was going to be okay.

We left at 7:31. My tank was almost out of gas, so we had to stop and get gas. Kyle loves the V8 drinks, so I gave him some money to run in and get a couple while I pumped the gas. He came back with V8 tomato juice. I am glad that he likes such a healthy thing. Now only if I could get him to like mint toothpaste!!!

We left the gas station with an hour and fifteen minutes left of our journey. We were driving along and then he started repeating things. He doesn't do this too often, but when he does he does it a lot. The first thing he repeated was "three thousand", followed by "you need to take care of yourself" in a singsong voice. All the time he was doing this, he was very happy and was rocking back and forth and side to side. There were about three other phrases he stuck on for awhile.

He also asked me what "curriculum" meant. I explained to him that what he is doing at school right now is his curriculum. Then he proceeded to tell me that he isn't doing anything in school right now. I asked him about math and reading, and he said he isn't doing that right now. I said he must be doing something in the seven hours that he is there. His exact words were, "I do when I am there, but I am not there now." He wasn't joking around, he was being dead serious. I had to smile to myself, it was kinda cute.

The Pain of Rejection

Every week Kyle goes out with a therapist and another child with similar needs to have fun and to work on social skills. Kyle looks forward to these outings. This is such a great opportunity for him and the other children. Kyle has been going with this one child and I thought that everything was going great. I began to wonder if I was imagining the social deficit.

I took Kyle to his one on one therapy appointment today and while he was in his meeting I met up with the therapist that he works with in these social meetings. We talked about the next time that she was going to be taking Kyle out and what they had planned on doing. It was great to hear that he was going to be making some different friends. Then, I was saddened to hear that the child he was going with regularly had asked the therapist if he always had to hang out with Kyle. This was very sad for me to hear. No one wants to hear that their child isn't liked by anybody. On the other hand, I do not blame the child either. Kyle can be mean to other children. He doesn't know he is until after he has hurt the other person's feelings and you have brought it to his attention. He then feels really bad because this wasn't his intention, but the damage is done.

The last time the two of them hung out with the therapist they went sliding. Kyle was getting mad and very hurtful to the other child because he "wasn't sliding right" and kept falling off. This is something that he has had a hard time with all along. His brother doesn't play with Legos right...his sister doesn't play the game right...every five seconds someone isn't doing something right.

The therapist could tell that I was sad. I said to her that I have tried to talk to him about this since he was little and he doesn't ever get it until after the damage is done. She reassured me that it is great that he takes ownership for it after and that he feels remorse. She told me that she was going to work with him and help him learn. I am so happy and grateful that he will eventually learn, I hope, but why is it that I am not able to teach him this? What is it that I am doing wrong? I love him with every bit of my heart, and when he gets rejected it hurts me a million times more than you can even imagine. He is such a happy, lovable boy and I never want that to change.

You Can Be Part of a Team in More Than One Way

     I try to involve Kyle in as many activities as the schedule allows for many reasons.  He is a kid and will only have these opportunities for a very short time, I want him to have fun and learn skills, but most of all I have him take part in different things for social growth.
     Kyle has fun at sports, he plays baseball, soccer, basketball and is involved in gymnastics.  He tried flag football two seasons but that really didn't work out.  He isn't the top athlete, but he does awesome in my eyes.  Seeing the growth he has made in the four years he has been playing sports amazes me.  The first couple of years he would physically be at practice, but would be off doing cartwheels half a field away from his team.  More interested in the grass and the adults than the sport or his friends.  A short attention span at this age is quite normal, but Kyle always likes to take things a little farther.  Now, he can sit with his team, follow directions and stay on task 1000 times better than he could back then.  This to me is amazing...how much he has grown in such a short time.  There is still room for growth, though.  When the team sits together, he will now sit quiet and still with the team, but is usually facing the other way and not looking at the coach.  He is listening...he can answer a question you ask or repeat what you say.  He is gently being reminded about eye contact.
     He is doing well, and they just had their first two games this season.  The coach was very good and picked up on something that will be very useful in future years.  She also knows that the main reason that he is in basketball is for social growth and not because I wisk for him to be in the NBA!  LOL!  She noticed that he likes the paper they use in games to keep track of who scores and such.  He seemed to have a strong interest.  She said to me that when he is older he might prefer to be a team manager.  This thought had never crossed my mind...what a great idea!!! 
     That night I talked with Kyle about the game and about how interested he was in the tracking sheet that one of the other parents was filling out.  His eyes beamed...he went on and on about how cool that was and how he wanted to do that.  Awesome!!
     Since he is so young, and sports are still working out for him for the most part, I don't want him to not practice and play...I still want him to be a regular part of the team, but I also want to let him learn something that he will enjoy and will become useful in the future.  Now to find a balance and compromise.
     I talked with the coach after practice yesterday and I thanked her for her great suggestion and we worked on incorporating that into the mix now.  Since it is something he likes to do, we can use it as an award for good behavior.  I explained to her that for now I would still like him to practice and play at least the first half of the game, and if he does well and cooperates he can keep track of the sheet for the second half, along with the other parent who will be keeping the "official" sheet.
     My goal in this is to force him to be out there socially and learn how to be part of a team, which is a skill he will need in his life, but to also grow another part that he really likes and is potentially a great fit for him!  I am very thankful that the coach noticed this, brought it to my attention and is helping him learn this.  I think this is going to be a great thing for Kyle in the future when sports become harder and more competitive.