Sunday, March 31, 2013

Seeing is believing

I don't know how true this rings for other's with children with autism or on the autism spectrum, but Ryan has to see something to believe it.  He will play his video games, watch movies and read books, and believe those things, but for the most part he wants to see something, touch it, and know it is real.  My mom was the kind of mom who made a big deal out of Santa Claus, the Easter Bunny, an so on.  I just never was able to get Ryan to believe in those things.  Even his first picture with Santa that he could actually start believing, he was very curious.  So I just never pulled off the whole "Look what Santa left you!"  or "look what the Easter Bunny brought for you!"  Do I wish sometimes that he had believed?  Of course!  It would have made things fun.  That was back in the day before I accepted our kind of normal.  Now I get a kick out of him saying, mom, you have to watch this youtube video with me.  It's called "The Easter Bunny Hates You!"  Yep......go check it out.  Ryan laughs his a** off at this.  I just shake my head!  lol 

Have a Happy Easter......  May God bless you now and always!


Saturday, March 30, 2013

An eventful road trip with Ryan

When I was younger and my friends and I would road trip, we had just the right music for road tripping.  The kind you crank up and everyone sings to.  So about a year ago I decided to take Ryan on a real road trip.  It was actually about 2 hours south of where we live.  We get into the car, stop for lunch first, and then hit the open road.  The first thing Ryan does is puts in a CD of the Beatles.  Now don't get me wrong.....  I love the Beatles music, but it's not road tripping music.  So then Ryan puts in a CD of Celine Dion.  Once again.....not road tripping music.  So, I take over.  I find a station that has a good mix of like Journey, Aerosmith, Foreigner, etc.  Then we flip it over to some Commodores, Bee Gees, etc.  Now all of that is road tripping music.  Then Steppenwolf's "Born to be Wild" comes on......  We were flying down the interstate jammin' to "Born to be Wild!"  Thus, Ryan's first REAL road trip!  He of course was shaking his head, holding on for dear life, thinking his mom is crazy!  lol

Fast forward to today.  Now anytime we get out and about we call it road tripping.  We jump in the car, run some errands, and then we hit the open road!  What's the first thing Ryan does?  Grabs that CD case and puts in the Beatles.  Yep, how soon he forgot.  I said, Ryan, that is not road tripping music.  He said, I know......  So he pulls out his Goldfrapp CD.  Okay, that music is okay too, but for some reason it give me a headache when I'm driving.  So we compromised to listen to 2 songs on that CD.  Then he found something on the radio, and we were good.

Recently, Ryan's favorite commercial is that AT&T commercial that has the guy talking to kids.  There are a few different one, but Ryan likes the one where the kid says his grandma moves slow and when the guy asks what might make her go faster the kid says, tape a cheetah to her back.  So we are driving along on our way to Tampa, and there is a SUV with Busch Gardens stuff all over it  next to us.  It was kind of driving slow.  Ryan says, tape a cheetah to its back.  I said, yeah it is driving kind of slow.  He says, no mom, really, it has something about a cheetah on it.  So we had a good laugh there.  We went hopping around to various video stores.  This is always the highlight to Ryan's day.  Of course I have to get some store time in too.

We moved on....  We went into Ross, and I went into the fitting rooms to try on a dress.  Well wouldn't you know that Ryan spots these teen girls that he is convinced are shoplifting.  I come out of the fitting room, and he is hiding and spying on these girls.  I walked away and he did not follow.  I said, Ryan!  What are you doing?!  He says, I am sure those girls are stealing and I want to see this play out.  I thought I would never get him out of this store.  He told me that he was watching a real life  "Cops" show in the making.  Yes.......this is what I deal with from time to time.  Welcome to our world!!  lol

We went through some shady areas of Tampa.  We actually saw a real hooker.  Ryan asked if she was for real.  I told him she was, and this was the area that they usually street walk.  So as we are heading home he comes up with one of his famous jokes.  He says, mom?  What does CVS, Walgreens and hookers have in common?  Not sure if I wanted to hear the answer to this.....  I asked, what?  He says, you see one on every corner.  He started laughing!!  I was just shaking my head.  This is my man-child......  He is a genius I'm sure.

That is a day in the life of road tripping with Ryan, and I loved every minute of it!


Road Trip

Today we're going to change things up a little bit.  As I mentioned in the beginning, Ryan will have some input into this blog and you will hear from him from time to time.  He is sitting here with me, but not really feeling it now.  We have decided to road trip today.  Get out and have some fun.  Our road trips always produce mountains of laughs, some serious talking every now and again, and just plain, good and clean entertainment.  So we will leave you with this......the best is yet to come!  Let's ROAD TRIP!!!!


Friday, March 29, 2013

Asperger's: yes, no, or maybe

I remember the first time I tried to talk to Ryan about him possibly having Asperger's Syndrome.  We had just come back from the ill-fated therapy session where he flat out told his therapist he would not be participating that evening.  He was all of 17 years old.  His therapist politely told him that was okay, that she would use this time to speak to me in private, and he would sit in the waiting room and behave himself.  His therapist handed me a book about Asperger's.  She told me to take it home and read it, and to do my own research.  I did, and I printed off 3 copies of this one explanation of AS, one for me, one for Ryan, and one for his dad and stepmom.  I mailed the copy to his dad with a not asking him to read it carefully.  When I gave it to Ryan, he locked himself in his room.  I didn't think he would read it, but he did.  His response was to open his bedroom door, throw the paper out to me, and scream very loud, "I AM NOT RETARTED!!"  He was shaking and almost in tears.  I asked if I could come in and talk to him.  He finally let me come into his room and we talked.  He asked if he could look over it again.  I left him alone to read over it, and he was finally ready to talk.  He said, mom, this is a lot like me.  I said, I know buddy.  He said, people with Asperger's is not retarted, they just have some social anxieties, and they are wired a little different.  The he said, they are really smart.  I responded with, yes I know.  He calmed down a lot.  Then I got the response from his dad.  He said they were like this is Ryan......finally we knew what we were dealing with.  It just took us another 5 years to get a diagnosis.  There is never an easy way to talk about this with your child.  I am sure in that respect, it is easier to talk about it when you get an early diagnosis.  When your child is older, and doing well in school, it's hard.  We were able to transition Ryan and most of our family into this without too much confusion.  But, to this day we are still working on it.


Accept and move it forward

Knowing Ryan was different did not make things easy.  I did try to fix him, and I did long for him to be like other children.  I would be lying if I said I was not ready to accept that things would always be different.  It wasn't until approximately 5 years ago when Ryan had his first breakdown that I was shaken into the real world so to speak.  On the heels of our very dear aunt's passing, I was dealing with the loss in my own way, and Ryan as always internalized everything.  He would not cry or show emotion.  He chose to stay with his dad in Georgia for a couple weeks after the funeral.  He told his dad that he had been taking his meds for his bi-polar disorder, but in reality he had not been taking his meds.  When I picked Ryan up, it was clear that he was going through withdrawal and within 24-hours he had an emotional breakdown that required hospitalization.  As heartbreaking as it was, it was a definite eye opener.  It was at this time that I stopped thinking about what others might think, and focused on what Ryan's needs.  When he was released from the hospital, we would have long talks.  I would listen to him.  It gave me a better insight into his world.  Those conversations were different.  They are not like a conversation I might have with a friend or family member.  I have to do a lot of reading between the lines.  I knew during this time that I had to accept Ryan as he was.  As soon as I accepted him, he could accept himself.  I am not saying that it is always easy, because it's not.  However, this is our life.  We accept it and move it forward.  Most people don't realize that a little bit of acceptance goes a long way, and it really does!


Thursday, March 28, 2013

The early days

When I was pregnant with Ryan it was a very complicated pregnancy.  As my OBGYN put it, he could have written a book on my pregnancy alone.  I had every text book complication in one pregnancy.

Ryan came into this world sickly.  He had chronic ear aches beginning at 10-days old, and things continued from there.  I think I began to see he was different before he turned 2.  Ryan started walking at 11 months old, talking before he was 1, and fully potty trained by the time he was 18 months old.  That was back in the day when disposable diapers just came out, and re-sealable tabs were not thought of.  So when a diaper tab was pulled away, it didn't re-stick.  I remember Ryan's nanny calling me at work to say I needed to be training pants because Ryan wanted to used the potty and she was wasting diapers.  So I bought a ton of training pants, and brought them home.  He fought with his dad and I when we tried to at least have him sleep in the diapers at night until we were sure he would not have an accident.  He never did unless he was sick.  Then he panicked.  We were blessed!

When Ryan reached 2, he started having little freakouts which we attributed to terrible 2's and tantrums.  It never occured to me that he was not having tantrums, but it could be autism.  I was a young mom, and my child seemed to be progressing normally.  Actually, a little faster than most babies.  Then he went to spend a couple of weeks with my mom and dad, and I remember my mom saying, "I feel like I have this little adult following me around."  She said he spoke in full sentences and sounded so grown up.  She also ran into problems when she would wash his clothes.  He freaked out, and would sit with his suitcase in front of the washer and dryer until his clothes were done.  My mom worried about this attachment he had to his things.  I guess because I was used to his ways, it was normal to me.

When Ryan turned 3, I had remarried and we had moved away from our family due to my new husband's job.  Ryan began to have these outbursts saying, "I'm scared - I'm scared!"  He would do this when we were not even around him or in close proximity of him.  Well wouldn't you know we would have that one neighbor in our apartment complex who heard Ryan screaming this one time.  Naturally this person called the Department of Children and Families on us, and reported us for abuse.  My first instinct was panic and I screamed at the worker over the phone that this was crazy!  I would never hurt my child.  It was an aunt of mine who talked to me, calmed me down, and told me to cooperate with them.  I had nothing to hide.  So I called back, apologized profusely, and scheduled at time for them to come out to our home.  Of couse they checked out our apartment, going through it with a fine tooth comb.  The worker spoke to Ryan in front of us and away from us.  She checked him for bruises and marks on his body.  My then husband and I were sitting in our living room, when Ryan started screaming, "I'm scared - I'm scared!"  It was a funny scene to watch this case worker come running down the hall screaming, "I didn't do anything, I didn't touch him!"  We were telling her that is just what he does.  She sat down and said, your home is spotless.  It is child proofed, you have healthy food to eat, and Ryan's room and toys are age appropriate.  She says, the allegations are unfounded.  Then she suggested that we seek help for Ryan.  We took him to therapy and we enrolled in parenting courses.  We were told Ryan was just hyper, and he was prescribed Ritalin.  Right away we noticed Ryan was having a negative reaction and nervous ticks.  I asked that he be removed from the Ritalin, and the therapist he was treating with refused.  I consulted with his Pediatrician who sent us to a child psychologist in a neighboring town that was much bigger than the one we lived in.  After extensive testing, the doctor said that Ryan was not hyper, and he should have never been put on Ritalin.  It took 2 types of medicines to get Ryan off the Ritalin.  It was done in stages.  However, no one ever suggested that Ryan might be autistic.

Ryan was diagnosed with bi-polar in his teens.  There was an extensive family history, and it made sense.  He fit every characteristic for bi-polar.  He also suffered from panic/anxiety attacks, and various phobias.  Ryan was not a behavorial problem.  He had learning disabilities, but always did very well in school.  When Ryan was in high school his therapist suggested that he fit the criteria for Asperger's Syndrome.  She wrote a letter to his psychiatrist, asking that they be able to work together for Ryan's sake.  His psychiatrist ignored it.  After I read and researched Asperger's, I realized that Ryan did in fact have it, but how was I going to get a formal diagnosis without his doctors being on board.  Ryan went on to graduate from high school with a 3.8 GPA.  He went to our local college for the next year and a half.  That was until his physical illnesses became too much and his panic/anxiety attacks became worse because he was sick all the time.  It was at this time that we applied for disability.  The medical bills had taken their toll on me, and literally broke the bank.  I knew I could not keep going on like this.  It took us 3 years and a heartfelt e-mail to the Governor and a Congressman to get help.  We prevailed after an administrative hearing, and Ryan was able to receive disability.  The Judge talked to Ryan in the presence of our attorney.  I chose to sit outside and wait for my turn.  When it was my turn, Ryan was not present.  The Judge commended me on how I parented Ryan, and said that Ryan was very lucky to have me fighting for him.  He asked me why I thought Ryan had Asperger's Syndrome and why I thought Ryan should be on disability.  I said your Honor, when you have a child you only want the best for them.  I saw my son go from being an active child with friends, to becoming a recluse.  I am his only friend.  I have this wonderful young man who is broken and I can't fix him.  I told him that I had done everything within my means to help him, but I needed help.  The Judge stopped me.  He said, Ms. Parish, I see the love you have for your child.  He said he had read every e-mail and letter I had written.  He said you have done a wonderful job.  He said he had worked with children with autism and on the autism spectrum.  He said he did not need an official diagnosis to tell him Ryan had Asperger's, but he knew that I would need an official diagnosis to get Ryan the help he needed.  He said I am approving Ryan's disability.  He said take advantage of everything you can to help your son succeed.  Well that is easier said than done.  There is not a lot of help out there for adults with Asperger's.  Ryan was officially diagnosed approximately 5 years ago.  He was 22.  I fight everyday to get him help.  Insurance won't cover therapy for the autism and those on the spectrum.  It happens in some states.  Just not Florida. 

This blog is our way of sharing and telling our stories, and we are hoping to raise awareness too.  I wanted to give an earlier look so that you would see where we are today.  It's an everyday battle, but I would not trade my life or Ryan's for anything else.  Ryan will tell me from time to time, "mom, I know you wish you had a normal child."  I just say, what is normal?  Our life is normal for us.  That is true.  What is normal today?  It can be whatever we make it.  Our life is normal for us.




When the school shootings in Connecticut happened a few months ago, I too was blown away, sorrowful, and outraged like most of America.  It was even more bothersome learning that the young man responsible had been diagnosed with Asperger's Syndrome, as well as other mental disorders.  Already the news media was stereotyping people young and old with Asperger's and mental disorders as dangerous, unstable, etc.  It wasn't until my son Ryan, who has Asperger's, and yes some mental disorders asked, mom, are they going to keep talking about this and making us look bad?  He continued with, mom, I am just as angry as everyone else.  This bothered him so badly, because he too was hurting for those childrent and their families.  I got to thinking that maybe it was time Ryan and I started sharing our stories.  I felt like this was a way to show people how real people with this disorder and other disorders live.  I had a talk with Ryan and suggested that we share our journey.  At first I got a lot of heat and negative feedback from him.  I was prepared with everything he threw at me.  I hope through this blog I can show others how we deal with things.  It will not always be pretty, but it will be honest.  I am not a doctor or an expert on Asperger's Syndrome.  I don't even know if I fully understand it.  I just know what I deal with daily having an adult son with it, and how I have come to terms with my child being different in the terms of how he processes things, and how we have learned to cope with the ups and downs that are thrust upon us.

So, I invite you to follow our story.  I will do most of the blogging, but you will get to hear Ryan's input and little quirks as well.  He is quite the jokester, and makes them up very easily.  So we will have jokes here and there too.  Come along with us on our journey.  We welcome your comments and stories as well.

Thank you and God Bless!