Monday, May 13, 2013

Have I said lately??

For me, one thing I have had to deal with over the years with Ryan is his attachment to things.  To this day he has toys that he has had from when he was literally a toddler.  So him parting with things does not come easily, if ever.  So you can imagine my surprise when he sold some of his old video games this past weekend so that he could take me to lunch for Mother's Day.  I was very surprised and it touched me more than any words could say.  On top of that, he painted me a picture!  It's a leaf.  I asked him what made him paint me a leaf.  He said he had been wanting to paint a leaf, and thought that was a good picture to paint me.  I had been offered a position back with my old firm, and thought maybe there was something symbolic in the leaf, as in turning over a new leaf and starting over.  I asked him about that and she said he had not thought of that, but it makes sense.  So we decided the painting of the leaf is about new beginning....starting over.  Have I said lately that I love my boy?  Because, I do.  I don't look at this past weekend as him showering me with things.  This is progress in our world, and I am smiling folks!  Life is good!

Peace!

Sunday, May 12, 2013

I am Ryan's Mom

I remember going to school functions when Ryan was little and the other children calling me "Ryan's Mom."  This continued through high school.....  I remember when I dropped him off at his high school to go on his senior grad bash trip to Universal Studios.  Being a nervous and protective mom, I had gone over the whole drug and alcohol talk multiple times with him.  So when I dropped him off he asked me to wait just a minute.  He came over to my car with quite the motley crue of young people.  There were a colorful mix of kids with tattoos, dreads, etc.  They all greeted me with, hey Ryan's Mom!  One little girl said, Ryan's Mom, you don't have to worry about us using drugs or alcohol....  We can have fun without all of that stuff (and they did).  It was at this moment that I fully realized that since giving birth to my amazing son, my identity was no longer mine.  I was and will forever remain, "Ryan's Mom."

Mother's Day to me is just another day.....  I am Ryan's mom everyday.  I may or may not get a card or gift.  I may or may not be taken out for a special meal.  But, I know that everyday I have this unique being in my life that I am blessed far beyond my expectations.  He is my inspiration...he is my teacher....he is my purpose in life. 

On this day......  Mother's Day......  The day designated to honor mothers, I pay tribute to my Ryan......  Because without him I would not be a mother.  Because of him, I am "Ryan's Mom."

Happy Mother's Day!!

Peace!







Thursday, May 2, 2013

Passing stones!

Ryan had another kidney stone on the move.......Ugh.....  We ended up in the ER on Monday for most of the day, and then the evening was spent with Ryan conitnually vomiting.  At one point I found myself on my hands and knees scrubbing the bathroom because he totally missed the toilet.  I never thought I would do well as a nurse or anything like that, but motherhood proves you can do a lot of things you thought you couldn't do!

So this week has been one of turmoil.....  Ryan FINALLY passed that kidney stone this afternoon.  Thank God!  He knew exactly when it passed, told me he passed it, and wasn't able to catch it.  I am just glad that one is gone.  Per the doctor in the ER, he still has multiple stones in both kidneys.  Yayyy........we were kind of hoping with all he had passed this past year, that maybe, just maybe he wouldn't have that many if any left.  Oh well...

I am hoping that things will calm down in this house where I can put two thoughts together to write.  I love sharing our stories.  It helps me and I am hoping it helps others.

Peace!

Saturday, April 27, 2013

When truth and innocence hits you like a ton of bricks!

When going through ups and downs Ryan's tries to take some sort of responsibility for what has happened.  He will apologize profusely for anything.  I honestly do not think he fully understands the whole "apology" concept.  Yesterday when we were driving to the beach after his CT scan and my job interview, Ryan apologized for all we were going through.  I immediately told him that where we are right now is where God wants us to be.  He then said, mom, if you did not have me, your life would be easier.  My heart went to my stomach!  I knew I had to pick and choose my words carefully, or it could very well backfire on me.

The first thing I said is Ryan, you've grounded me......  He apologized again.  I said, no....  By that I mean, you have given me a sense of purpose in life.  You have made me want to be a better person, a good mom.  He wouldn't look up, but nodded his head yes.  I said, when God gave me you, he knew exactly what he was doing.  I said you are my purpose in life, and I am a better person because of you.  I reached over and patted his clasped hands.  I asked him if he understood what I was saying.  He lifted his head and looked over at me and shook his head yes again.  He then lifted my hand and kissed it gently.  Moments like this remind me of no matter how bad things get, it's still going to be okay.  At times I have to be reminded of just how innocent he is.  I love this child with all I am......

Life is so short.  We do not know what the next minute holds for us.  Embrace life, love with all you have, and cherish every moment.  Like Ryan and I.....you are right where God intended for you to be.  Accept it and move forward.

Peace!

Friday, April 26, 2013

Keeping things in check....

I try to keep things as light as possible when it comes to Ryan's doctor's appointments.  If I don't, he feeds off of my energy, and that can spell disaster.  With that said.....  Ryan had his kidney CT scan this morning.  When had called to schedule the scan, the snotty little girl in the scheduling office told me there were only two kinds of CT scans on the kidneys.  One required the IV, and the other required the patient to drink stuff before coming in for the test.  Well, Ryan's Urologist had told us he just wanted a basic CT scan of Ryan's kidneys since Ryan was not having pain, and did not believe that there was blockage anywhere.  Needless to say, this little girl.......and I say that because she didn't sound like she was a day over 18.....and I went back and forth until I finally gave in and said, okay - whatever!

Fast forward to two days ago.  I got a call about an interview.  It was close to home and the only time they had available was an hour and a half after Ryan's test was to begin.  I called the radiology place to see if I could find out how long Ryan would be in testing.  I was told a total of one hour.  This including coming and being checked in early.  So this morning we go in EARLY.......get his paperwork completed, and sit there for a 1/2 hour.  Finally, I asked them when Ryan would be taken in for his test because we had other appointments.  The lady said, I'm not sure.  Naturally I went into panic mode, and then I told Ryan that he may have to sit there for a few minutes if I had to leave and come back.  He said okay and hung his head.  These kind of things break my heart.  They finally came out and got him, and I texted my brother thinking if I had to leave that maybe he could run over and pick Ryan up.  Well before he could answer, Ryan was out.  It was a matter of about 10 minutes being back there and he was out again.  He said, they didn't have to do the IV so it didn't take as long.  He said when the techician asked him about it, he told her that the doctor said he didn't need the IV because he wasn't in the middle of passing a kidney stone.  She then called the doctor's office and they confirmed what Ryan told them, and I had told the little girl scheduling.

In a matter of the time of that appointment our whole day was upset.....Ugh......  There are times when I feel I'm damned if I do and damned if I don't when it comes to explaining things to Ryan.  Because he doesn't process things the way most people do.  Now we are winding down.  He helped me make dinner and he his watching some animal show on tv....they are his favorites; animals and sea life.  We weathered this storm, and all seems good now.  I was proud of him going in there and letting the technician know what the doctor said. :-)

Peace!

Tuesday, April 23, 2013

And you think your life has quirks ;-)

Remember the "walking" shoes I referenced in a couple of past blogs?  Well, that is just one of many quirks Ryan has.

Years ago my baby brother came by to mow our yard.  He brought with him a big pink plastic cup with iced tea in it.  He forgot the cup when he left and I washed it and had it ready to give to him when he came back over, or we went over to his house.  I called to let my sister inlaw that I had the cup, and she said it was no big deal.  Shortly thereafter, Ryan adopted this big pink plastic cup.  And, for years now he has used that same cup!  I wash it over and over again.  The cup understandably became Ryan's cup.  One day my sister inlaw called and said that Walmart had those kinds of cups in red, white and blue on clearance.  She said that since Ryan liked them so much, we would have backups.  Well wouldn't you know, Ryan would not hear of it.  He only wants the pink cup.

He also has this thing for using bowls and spoons when he eats.  If we are out at a restaurant, he is fine.  But if we go to my parent's house when they are here in FL, he wants to use a bowl if possible.  I have noticed recently though, he is using forks more.  That is progress.....

Then a couple weeks ago Ryan and I were going through some of his old clothes that he had outgrown or just didn't wear.  When we moved to the closet and pulled out t-shirts, I couldn't believe how many new looking shirts were there.  A couple even had tags still on them.  So I started pulling them out and asking if he would wear this or that.  He would respond with yes or no.  One t-shirt I pulled out was really nice.  He said, NO.  I asked him why he wouldn't wear it and he said, it has a pocket on it.  Needless to say, all of the pocket t's went into the bag to give to my nephew.

The experiences with Ryan are very quirky, but full of good will......  Lots of grrrr'ing and lots of laughter.  An experience everyone should have once in their lifetime.  As for us.......it is our life. ;-)

Peace!

Monday, April 22, 2013

Music to my soul

Only my child......  Ryan, as I've mentioned before, is an old soul in a young person's body.  He loves all genres of music from different time periods.  He loves the Beatles, the Carpenters, Cher, everybody......  He can tell you who sings a song and if he isn't sure, he will Google it in a heartbeat.  I am finding though, that songs where there is any reference of crying or cheating he will make fun of.

I started noticing this when Ryan started joking about Rick Springfield's "Jessie's Girl."  He was like, dude........go find you another woman.  That's Jessie's girl.....  Today it was Van Halen's "Jamie's Cryin."  LOL!!  We were coming back from the beach and that song came on the radio.  I was in bumper to bumper traffic when I hear in a high pitch voice, "Jamie's cryin', give that girl a tissue!"  It startled me, and I burst out laughing!  Then he says in that same high pitch voice, "Jamie girl, stop your cryin', there's more fish in the sea!"  At this point I was laughing so hard and trying to drive in traffic. 

It's moments like that when I realize that God put this miracle into my life...... Life is not easy, but this child lights up my world.  I love being his mom!

Peace!

Doctors and Stuff......

Nothing is easy in this household........  I got bombarded with interviews, sometimes 3 a day.  It was crazy.  Then I get a call at the end of last week from Ryan's Urologist.  It was time for Ryan's appointment.  I did not realize it had been a year already.  He has had one trip to the ER with a large kidney stone and passed multiple little ones, but had not seen this doctor in a year. 

As with any time we go to any doctor, Ryan is usually anxious or very quiet.  Today he was anxious!  Oh Lord.....  When we got there for the appointment, he was almost immediately taken back into an examining room.  After the nurse updated his info and took his vitals, Ryan shifted into rare form and became anxious.  He was eyeing the little stool with wheels that the doctor sits on when he comes in.  I knew what would happen next.  Ryan looks at me and says, you know what I am going to do, and I did.  He got up and went to sit on the rolling stool.  He spun around this way and that way.  Let me remind you that this is my 27 year old man child.  He is at times a child in a grown man's body.  It is easy to see why people see him as a grown man.  It's moments like today in the doctor's office that people do not see.  After scolding him and telling him to sit back down in his chair he starts picking and chewing at one of his fingernails. 

I don't know if this is just an "autism" trait or what, but Ryan picks at his toenails and fingernails very badly.  For the most part he wears socks and shoes all the time - Thank God!  Otherwise, he would not have any toenails.  So I proceed to ask him to stop with the fingernail.  There is barely a fingernail there.  It looks awful.  He tells me that he is trying to clean the nail out.  There is no nail to clean there.  I asked to PLEASE stop.  This became a bone of contention with us.  He started laughing and taunting me, and of course I eventually started laughing.  I mean, how could I not?  LOL! 

Finally, he gave up on the fingernail and then started playing with the little container holding all the kidney stones he had passed and caught over the past year.  At this point my nerves were shot!  Shot, I say!  I asked him if he was anxious about something.  He responded with, maybe just a little.  So this is where I try to distract him.  That wasn't working either.  Then the "thumping" started.  When he gets anxious he will sometimes tap his feet.  We have deemed this "thumping."  I knew at this point I should have given him an extra anxiety pill.  I just thought he would be okay.  He loves this doctor.  It's always an adventure to go to the doctor.....

The outcome?  The doctor decided to order a CT Scan to see how many stones are left in Ryan's kidneys and to analyze the stones he had already passed.  He goes back in May to follow up.

We decided to ride down to the beach after the doctor's appointment.  Ryan likes to go sit on a bench on the causeway and watch the ocean.  He is fascinated with the ocean and sea creatures.  We've been doing this more often since I have been out of work.  It's not too far from home and sitting on the causeway does not cost anything.  This also helped Ryan AND Mom to decompress......  I love my boy!

Peace!

Sunday, April 7, 2013

Believing and Keeping the Faith....

I was going to take a break today.....  Just kind of disappear for a little while, but not "really" disappear.  Then I got up this morning and turned the tv on.  I caught part of Joel Osteen's sermon on the Lifetime Channel.  I had never watched him before, even though my older sister is always asking me if I have. 

The past few months have been rough.  It started when I found a lump in my breast, which turned out not to be cancer, thank God.  But, through all the testing, I had to be tested for a couple more cancers, and some other things.  When that was all said and done, I got a clean bill of health for those things, and got sick with a virus.  I came back to work and a couple of weeks later, I lost my job!  I know, right?  Then my unemployment got messed up, leaving me to milk a final paycheck as long as I could.  Finally, beaten down and feeling broken and unfixable, I reached out for prayers from family and friends.  I am always that one asking for others, but not usually for myself.  I had not gotten any hits from the resumes I had sent out, and poor Ryan was starting to become depressed.  He generally feeds off my energy.  I had been praying and asking for a little help just seemed right.  The following afternoon while with Ryan at his eye doctor's appointment I got a call from one of the recruiters.  I got a job interview the next morning.  That evening I got another call from a firm I had sent my resume to, and they schedule me for an interview tomorrow.  Then I interviewed with another recruiter after the Friday interview, and he is working on getting me an interview with another firm.  So before I could get out of Tampa, I received another call.  This from another firm, and now I have an interview on Tuesday!  Talk about prayers being answered!  I feel so blessed.  I know now that the Lord will not let me down.  This turn has also made Ryan perk up a little bit.  I am believing too that the Lord will provide the gas to get to these interviews.  Either way......I feel it in my soul that I will have a job befor this next week is over!!

Having written that little book, it brings me back to this Joel Osteen sermon I watched this morning.  He was talking about showing kindness.  Showing kindness even when you're sick, don't have money, or anything like that.  To ask God how you be a blessing to someone.  So I immediately thought about a conversation my Ryan and I had one time.  I had a headache and had not been feeling well.  A family member asked for help with something.  I downed some headache medicine, put on my happy face and went to help.  Ryan had asked me why I always do that.  He was abrupt and not happy that I was going to help.  I told him that it's important to help others.  I said, I don't have money to help people, but if there is something else I can do to help others I will.  I told him that acts of kindness is important.  That maybe one day the Lord would bless me.  I said, I don't expect anything in return.  I told him that Granny and Papa had always helped people, and other family members had.  I don't really think Ryan was getting my point.  So this afternoon I tried to explain the sermon I had watched, and all about the kindness.  That if you show kindness it will come back to you in a good way.  It may not happen today or tomorrow, but it will one day.  It may even be when you get to heaven.  I told him that I would continue on this path.  He did not argue with me or question it anymore.  He just shook his head.  I think Ryan and I will be okay.  The bigger and better things will come one day.  Yep.....the best is yet to come!

Peace!

Saturday, April 6, 2013

Cha-Cha-Changes.........Nope!

I've always said Ryan is an old soul in a young person's body.  With the exception of "Red Robin" and a couple of other places, Ryan likes to eat at places that are usally frequented by the older crowd when we go out.  He will find a store that is a chain, and only want to go to ones that he is familiar with.  It's all routine.  He calls a certain Walmart in our area, "our Walmart."  He calls a certain Ihop in our area, "our Ihop" and so on.  It is kind of funny.  We are Old Navy fans.  A few years ago, Old Navy changed their layout of the store.  Yes, "our Old Navy" store.

We went shopping there one day after the change, and Ryan kind of freaked out over the layout change.  Ryan would usually go look at his department and come back with a shirt or something that he liked.  Well this time he disappeared.  I got nervous.  I was running around looking for him, only to find him standing at the front of the store.  He was standing in one place, just kind of looking out at everybody.  I asked him what was wrong.  His response was, they made changes and I don't like them.  We have to leave!  I said, no, we are not going to leave.  So he said he would stay right there until I was finished shopping.  He did this over the course of about three more visits there.  Now he is fine a few years later.  I call this his "rain man phase."  Yes, I name things with him.  It's just when he makes his mind up......there is no room for changes.  Sometimes I will catch him in a rare mood, and I am able to slide in something different.  It's hard to RSVP for something or make long-term plans.  They usually change......well almost always change.  No two days are the same. 

Peace!

Friday, April 5, 2013

Let's do that again, NOT!

I follow this page on Facebook, and they post wall pictures and stories....it's great!  So I log onto Facebook, and see this wall picture that says, "Autism, it's never the same day twice, but don't dare change the routine."  I'm not sure who the author is of that quote, whether it is the person who has this page or somewhere else.  Right now I will give credit to an unknow author.  The picture had a child a young child asleep on the bed with toys and shoes neatly in a curved row.  This stood out to me, and I had to laugh!

Remember Ryan's "walking" shoes that I mentioned in a post earlier this week?  Well, Ryan has several pair of shoes.  He has never been hard on shoes, and all of them still look new.  The "walking" shoes being one of the pairs.  About three years ago, Ryan went through this phase where he had to have every pair of his shoes out in the living room.  I would put them under an end table, and by the time I got home from work he would have them lined up neatly in a line, extending out from the front door and out into the living room.  After this went on for several days of back and forth, I gave up.  I decided that this was one battle that I did not want to fight at that time. 

During this time I was dating a man that Ryan adored.  He came over one night to go to dinner with us, and when he walked in he saw the line of shoes.  He was always careful not to say things that might upset Ryan.  So later when we were alone, he asked me what was up with the shoes.  I explained what Ryan had been doing with the shoes, and I finally just gave up.  He proceeded to tell me that his youngest son who was living with him at the time would pile his shoes at the door, and after asking him one time to clean them up and he didn't, he told him they were being thrown way.  That fixed the problem.  He also said that he understood it would not be that easy with Ryan.  So I decided to pick this battle up again. 

I started with putting them under the end table again.  When I came home, I would find those shoes spread out again in the neat little line.  So I decided to tell Ryan that I would throw the shoes away if he didn't stop.  I explained that the living room was the first thing you see when you walk into the house, and people had to step over his shoes.  He argued that in my bedroom I had shoes in a line.  Of course I would leave out a couple pair of flip flops and my gym shoes, but you could still walk around my room with no problem.  So there was some method to his madness.  I told him he was welcome to line his shoes up in his room, and he flatly refused.  So out of the blue one day I gathered his shoes up, and put them out in the garage.  I guess he thought I had thrown them away, but I didn't.  The funny thing was he never asked about those shoes.  He spotted the "walking" shoes not too long ago.  He referenced those shoes.  I told him they were still practically brand new, and asked if we could give them away.  I got the firm "NO!"  He will not wear them, but he doesn't want anyone else to either.  We still have those shoes!  lol

So seeing that wall picture on Facebook took me back!  It doesn't matter with Autism or Asperger's, what the child's age is, we as parents or caretakers of our special children see the similarities of behavioral patterns.  It just fascinates me.....  Their whole psyche!  To spend just a couple of hours inside their head.  Just to see how their mind works.  It's a puzzle, a mystery.....something we may never understand.  As one of my brothers said to me yesterday, "you have your hands full."  Yes I do, but Ryan continually amazes me.  I love laughing with him when he is in that mood.  I love being silly with him.  I love being Ryan's mom!!

Peace!

Thursday, April 4, 2013

When I say I literally do most everything right by myself....I am not kidding.  I wake up and I have Ryan right there.  And, since I lost my job almost a month ago, I am literally with him 24/7.  I ask him ever so often if he would like to go spend a week or two with his dad in Georgia, or maybe a long weekend.  I always get the same response.....  I'll think about it.  Nothing yet.  It's hard.  I love him so much, but I would like to just have to worry about me for a few days.  It's much easier when I have a job.  Most folks want to go home for a break from their job....me.....I'll stay at my job, just for a break from home.

I just get these guilt feeling when I leave Ryan at home.  I guess that is normal for us Aspie moms.  I know when I am working, I get out of the house.  However, Ryan doesn't get out unless I take him out.  I am still working on programs for him, but he is not having any of it.  I went for a walk down to my brother's house the other afternoon.  Him and his wife invited me to stay for dinner and asked me to have Ryan walk down to eat with us too.  Well wouldn't you know........Ryan says no.  I brought him home food, but still......  I feel guilty if I don't include Ryan, but feel guilty when he doesn't want to participate and I do.  I have to find that balance again.

Ryan has an eye doctor's appointment today.  I'm sure I will have a story to tell about that.  ;-)

Peace!

Wednesday, April 3, 2013

I can't do that again anytime soon

Let's just say that trying to pull an all nighter with my kind is not a good thing......  I slept this morning until 9:30 a.m. and I am now ready for a nap!  Ay ya ya!!  Ryan is back at his game, and our little dog Lucky is freaking out playing with his toys.  I am going to take a nap, and hope that when I wake up.......everything is good!  I will be back!  ;-)

Peace!

Tuesday, April 2, 2013

Pulling an all nighter with my boy......

Yes, it's after midnight and I am pulling an all nighter with my boy.  Ryan told me earlier in the day that he was going to have to pull an all nighter due to his computer game that he plays.  It's Easter season, and on this game they apparently Easter Egg Hunt.  There are coins in the eggs, and he is on a roll.  Yes, a part of this Asperger's at its finest.  He is very fixated on completing this task on this game.  I honestly don't think I will hold up.  I am very tired.  He has taken breaks with me to be a little goofy with me.  He has sang some songs with me and we have just been silly.....  The laughter is good for the soul.  He is now giving me a lesson on sea turtles while playing his game.  He is very knowlegeable in things he is passionate about.  I love it, because he's my go to boy when I have a question about something.  He seems to love the sea life though.  Well......I am slowly drifting.  So I will hit this again later.

Peace!
Ryan and I feel so blessed to have the friends and family we do.  We have seen such an outpouring of support today...  I have lost count of how many have shared that they are wearing their blue or sent us pictures of themselves wearing their blue!  It helps when people start supporting, educating themselves and accepting. 

Ryan has been in rare form this morning.  I got him up after I had showered and got dressed.  I told him we were going to take a couple of pictures to post of us in our blue.  He got up with no problem and has stayed up all day and has spent time with me out in the den, instead of his normal bedroom hibernation.  He has been doing silly stuff to make me laugh, which is much needed right now!

I love being Ryan's mom!  I know I am right where God wanted me to be!

Peace!

A Night of Awareness.....

I have been in deep thought on this "World Autism Awareness Day."  Thinking while we still have a long way to go, we are making progress.  I wanted to share an experience that Ryan and I went through a couple of years ago.

Ryan and I were on our way home from visiting with my mom.  Ryan had been very moody and just not in a good place.  This was one of those rare times that he actually challenged me in a more agressive ways.  By agressive I mean, using his words.  He proceeded to call me a b***h, and threaten to get out of the car.  I did not take him seriously, when I should have.  At the next traffic light, he jumped out of the car just as the light changed, and I had to move because the cars behind me were blowing their horns.  Before I could maneuver my car out of the traffic and turn around, Ryan was gone.  It was kind of chilly out, and Ryan only had on shorts and a short sleeve t-shirt on.  It was getting dark and it was time for his meds.  My first instinct was to become hysterical.  I drove around for about 10 minutes and could not find him.  I learned later that he had seen me and hid behind a tree.  I went home and decided to call our Sheriff's Office.  I explained to the dispatcher what had happened, and the location of where Ryan had gotten out of the car.  They advised me to go back to the intersection where Ryan had gotten out of the car and they would have deputies meet me there.  There was a shopping center there and that is where I was to meet the officers.  This was also on a county line.  We had just barely crossed from one county into another.  I also called my youngest brother, and my sister inlaw and nephew came over to meet me.  My sister inlaw went with me to the shopping center and my nephew stayed at my house in case Ryan came home.

A Sergeant with the Sheriff's Office and a deputy met with me.  I gave them my statement, a description of what Ryan was wearing, and explained that he had Asperger's Syndrome and might freak out if approached.  As soon as I said Asperger's, the Sergeant spoke to his deputy, and before I knew it there were deputies coming from everywhere.  There was also a Sergeant with the Police Department of the neighboring county and officers from there too.  They set up a mini command post.  They asked where would Ryan likely go to feel safe; i.e. a hospital he liked, back to my parent's home, etc.  They even brought out a canine unit.  These law enforcement agencies went above the call of duty in my opinion.  I remember one young deputy coming up and asking me what Asperger's was.  I explained that it was on the Autism Spectrum.  He said, you don't have to say anymore mam, we'll find your son!

Finally, they dismantled the mini command post, and told me that I could go out looking if I wanted to, and they would be in touch.  It was getting cooler out, so I ran home to get jackets for me and my sister inlaw.  My nephew said, Aunt Susie, there were officers here.  They searched your entire house and the utility shed out back.  He said, I told them to go ahead, I hope that's okay.  I said, yes....it is okay.  Certainly they had to confirm my story and eliminate me as possibly hurting Ryan.  He said, they said all was good.  So my sister inlaw and I went out looking.  We finally decided to come back to my house.  There were 2 deputies stationed at my house.

We weren't home long when I got a call from one of the Sergeants saying that Ryan had been located.  Then I got a knock on my door and it was the Sergeant who had intitially responded at the shopping center.  He said, Ryan had been located in a subdivision.  He saw the Sheriff car driving slowly and approached the car.  He asked if the officer could point him toward U.S. 19, because he knew if he made it to U.S. 19 he could find his way home.  The officer (the other Sergeant) asked him, young man what is your name (although he knew it was Ryan)?  Ryan told him.  The officer said, son, we've been looking everywhere for you.  Your mother is at your house waiting for you to come home.  When they pulled up to my house there were "cop" cars everywhere.  The Sergeants spoke, and they said Ryan did not want to get out of the car until the family was gone.  My sister inlaw and nephew left, but not before I gave them hugs and I, as well as the officers thanked them for being so supportive and being there for me and Ryan.

When Ryan came into the house, the Sergeants both spoke to him.  They explained that what he had done was dangerous and caused much worry to me.  They told him to be sure to always have his cell phone (which Ryan hates to carry) with him so that he could contact family or law enforcement if he needed to.  Ryan told them that he understood.  I was so thankful for all the law enforcement agencies and officers for their quick responses and commitment to finding Ryan.  They were amazing.  It was established that Ryan had walked approximately 10 miles and it took approximately 4-5 hours to find him. 

After the officers left, Ryan said, I am going to be sick......He ran to the bathroom, threw up, came out and took his meds and slept for over 12-hours straight.  I would go into his bedroom to make sure he was still breathing.  When he finally got up, he dubbed the shoes he had been wearing as the "walking" shoes.  They were new shoes, and he would never wear them again....

I guess this whole incident restored my faith that law enforcement are educating themselves on Autism, and they are willing to help.....  Over the next few days, I read stories from all over the country where autistic children and adults had gone missing that same night.  It was a full-moon.  If my memory serves me correctly 1 or 2 did not make it.  Our story turned out with a happy ending.  We were fortunate.

Peace!

Monday, April 1, 2013

April is Awesome.........

So here we are once again...  April is Autism Awareness Month!  I mean, come on......like you hear from all of us Supermoms ALL the time, Autism Awareness is everyday of our lives.  It's nice though that we can have a special month to really be obnoxious.  I say that light heartedly.  I sometimes think I get on people's nerves because I talk about it so much.  It's just that this is mine and Ryan's lives......  We live it everyday!  We talk about it openly, but no one is listening for the most part.  I made a phone call a couple of weeks ago.  I was inquiring about getting additional help for Ryan since I have yet to find a therapist who treats Asperger's Syndrome that accepts his insurance.  The lady I spoke with said, oh Asperger's doesn't fall under autism.  Asperger's is considered to be the highest of functioning autism, and they do not qualify.  What?  Really?  Ryan has the worse form of Asperger's.  A Judge and Doctor, who both talked and observed Ryan (the doctor testing him), have written in reports that Ryan will never be able to live independently.  Okay......I will continue to fight.  I can deny that this is true, and then I am not accepting my child.  I'm in a catch "22" here.  I tried to throw Ryan out there into the real world.  It didn't work.  So I accept this, and now I am trying to get him help.

As I mentioned before, Ryan also is bi-polar, anxiety/panic disorders, ocd, and many phobias.......  He also has physical ailments.  He has had chronic kidney stones since he was 12-years old, and has ulcerative colitis.  When Ryan was 19 he was diagnosed with the ulcerative colitis.  After every possible treatment failed, Ryan had surgery to remove his large intestine.  Because the rectal area was not diseased at the time Ryan chose to keep that, thus not having to have a colostomy bag.  We were told by the team of surgeons that there was a VERY small percentage that the ulcerative colitis would return in the rectal area.  Well wouldn't you know.......it returned.  Ryan continues to take medication with the possibility of someday have to have that area removed as well.  With regard to the chronic kidney stones, Ryan has been to many specialists who has established that we have done just about all we can to to prevent them.  He will continue to have them.  The physical end of things meshed with the Asperger's usually triggers the anxiety and panic attacks.  So we really do deal with a barage of things. 

Ryan's insurance will cover therapy for his depression and bi-polar disorder, but will not cover
therapy for the Asperger's.  Ryan's former therapist refused further treatment last year because she said that she could not help Ryan anymore.  She said he was not trained to treat autism or any of the ASD's.  What she knew came from having a best friend who had children with autism, and her own personal research.  Her bosses would not pay for the therapists to take classes for autism.  So, here we are without proper treatment.  I find it has to be worse too, because Ryan is an adult.  I decided to research homes for adults with autism.  I was so shocked to learn that the decent facilities costed in the area of $15k - $25k per month.  That is unrealistic.  That is saying, because I am basically "poor" my child cannot get the type of treatment that the elite country clubbers' children get.  I had the opportunity to speak to a mother of an adult son on the spectrum.  She said that she HAD to put her child into a home, just one of these homes that houses all types of special needs, not specifically autism.  Her son was violent.  He attacked her and other family members.  The first home he was in, he became to violent and they were not equipped to deal with him.  He was kicked out.  This mother found another home and says her son is doing very well.  Well, here we go again.  Ryan is not violent.  He is not a behavioral problem.  He was never one of those kind of kids.  He has ups and downs, but nothing more than those expected for everything he has.  Like that teacher who didn't go to jail because she was so pretty, and as her attorney put it, would not survive in prison.  Well, Ryan would never survive in a home like these this mother put her son in.  And, as long as there is a breath in me, my child will be with me.  I worry about what will happen if I'm not around, but I will save that for another time.

I will close with this.......Support Autism....support all the Autism Spectrum Disorders.  Show your acceptance.  Show your support.  We parents and our special children need that.

Peace!

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!

Peace!

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!

Peace!

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!!!!

Peace!

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.

Peace!

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!

Peace!

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.

Peace!

Welcome!

Welcome!

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!