Hunter’s first wedding

On May 28th, friends of ours from church got married.

Back in February they told us that they were going to be married in May and they would like to ask Hunter to be the ring bearer.  My first thought was “what are you guys crazy” asking Hunter to be ring bearer had its share of risks and were they or even us, ready for them.  Hunter’s Aspergers has him look at the world in black or white, no gray area at all.  He is rigid in his ways and definitely resistant to any type of change, so when the day comes, he may perform or he might not, period.  Any type of change during the rehearsal or ceremony could absolutely have Hunter going off the deep end.  So after taking a deep breath I told them to go ahead and ask Hunter.

They did ask him and he was clueless to what a ring bearer was or a wedding for that matter.  They patiently explained everything to him, to which he asked “can I carry Pikachu? He was told he would be carrying a pillow with the rings on top and that he could have Pikachu at the reception.  Then he wanted to know if he could walk down the aisle like a penguin because he always wanted to be a penguin (you know, tuxedo = penguin). They said no he would have to walk normal but could be a penguin at the reception all he wanted.  After taking this all in he said yes he would be ring bearer.  I just kept thinking, they do not know what they are in for.

When the time came near, I brought him to be fitted for his tuxedo.  He did very well at the fitting but I was really leery about Hunter wearing all those clothes plus real shoes.  Boy, I thought, I am in for it.

The rehearsal came and Dave took Hunter as I had to stay home with Hayley because she was receiving therapy.  When Dave got home from the rehearsal, he immediately asked for a glass of wine and collapsed on the swing on the patio outside.  I asked Hunter how it went and he said ok.  Then I asked Dave.  He said it wasn’t horrible but it was as we thought, Hunter was not keen on all the changes that came and went.  The wedding party decided early on that Hunter would not be capable of standing with the wedding party up at the altar for the ceremony.  Hunter would walk down the aisle and sit with me in the front (although I really should be on the bride’s side of the church, I got to sit in the front row  next to the grooms immediate family.)  Anyway, Dave said Hunter accepted this pretty well, but then came the pillow…. Hunter for whatever reason got quickly attached to the pillow.  He was told that when the pastor says it is time for the exchange of rings, he would walk up to the best man and hand him the pillow so he could retrieve the rings.  Hunter flipped out! “I AM NOT GIVING UP THE PILLOW”!  The Pastor told him that he didn’t have to give up the pillow, just make-believe.  Then Hunter thought the rings would actually be on the pillow, when told no, that the best man will have the rings in his pocket and they would be making believe, Hunter yelled “ITS A FAKE!!!”  Dave got Hunter calmed down and said now was the time to practice the processional.  Hunter did extremely well walking down the aisle and sitting next to Dave.  When the Pastor said it was time to exchange the rings, Hunter marched up the steps, got in front of the best man and yelled “YOU ARE A PILLOW SNATCHER!!!”  Once again he sat next to Dave, who by this time was sweating profusely, and Hunter calmed down.  Dave said to me after he got home “tomorrow is anyone’s game.”

The next morning came and we dressed Hunter in his tuxedo.  He looked so adorable.  I was really surprised he didn’t complain too much.  The thing that was most uncomfortable for him were the shoes.  He has never worn dress shoes before.  I will say by the time we got to the reception that day, Hunter was sporting some mean blisters (yet he didn’t really complain), surprise, surprise.  He was a little tough when pictures were taken before the wedding, but he got through it.

The wedding started and the bridesmaids came down the aisle.  It looked as if Hunter was speed walking because he was right on top of the last bridesmaid and she had to keep looking back to be sure Hunter wasn’t going to step on her dress.  He sat down next to me and I praised him.  Hunter sat very quietly during the ceremony and I whispered what he needed to do when the ring exchange was announced.  Now like I said before, Hunter is not used to any type of dress clothes or shoes.  He had on tee-shirt, white shirt, tie, jacket, pants with clips on the side, socks and dress shoes.  Well what I didn’t realize was that little by little Hunter was becoming “Un tucked it”.  So as he walked up the stairs to the best man, his pants started to fall down!  He grabbed the back with one hand and handed the pillow to the best man with the other.  You could hear the chuckles in the crowd.  The lady sitting behind me tapped me on the shoulder and said “there always needs to be a light moment in a wedding”.   Hunter came back to sit with me and said “I saved my pants in the nick of time”.  I was very, very proud of him and how her performed.

Once at the reception, Hunter took off the shoes, jacket and tie and danced the afternoon away………..holding Pikachu and making believe he was a penguin.

Dave helping Hunter get dressed

Hunter in his Tuxedo

Hunter and Daddy

Hunter and Hayley (she did excellent by the way)

Autism and Water

 

Hayley LOVES water!  It is both a good thing but also a bad thing.  Any kind of water will do.  She likes to swim, jump, splash and dive into water.  It is the one thing that will pretty much keep her occupied and calm. Hayley has many sensory issues, so I think whether swimming in the ocean or in the pool  it is relaxing for her.  When we go to Florida, Hayley could spend hours on the beach.  The problem is that she is fearless while I am fearful.  Hayley has no concept of the danger of the ocean.  She loves jumping into and under the waves.  I am not a strong swimmer so Dave usually is the one out in the waves with her.  Also, Hayley tends to bolt from the beach into the water no matter how rough it is.  She is so fast, it is hard to catch up with her and she just will not listen when you call her or tell her to come out of the water.  It is like Hayley is in another world. Another thing Hayley likes doing at the beach is lay on the beach with her ear to the sand at the ocean’s edge.  She becomes mesmerized.  I think Hayley likes the sound of the waves crashing on the shore,  as well as the vibrations.

We opened our pool on Monday, April 28th.  I know, it is early, but we have always opened it in April yet didn’t use it until the end of May. We like to look at it and listen to the waterfall.   Not this year!  Hayley and Hunter has been in the pool 5 times already!  We put the heat on and the temperature got up to 77 degrees (I don’t go in the pool unless it is 85 degrees) and they were in.  As long as the water is somewhat warm, they don’t care about the air temperature.  I am so happy they have been in the pool because it is exercise but more importantly swimming makes Hayley sooooo happy (unless I giver her the wrong color ice pop).  Hayley’s school has a swimming program so she has learned how to swim and dive into the deep end.  This past Saturday Hayley literally dove/jumped in the pool for 2 hours straight!  I was exhausted just watching her.  Hayley loves to be underwater because I think she likes the pressure on her head and ears.  Even when she takes a bath, Hayley will for most of the time lay and keep her head under the water just past her ears again, for the pressure.

Since today it is supposed to get up to 75 degrees outside, I have already started the heater in the pool.  After the kids get home it will be off to the pool.  I will make sure I have the right colored ice pops and my book so I can somewhat relax for a while.  The only thing is, being in the pool does not stop Hunter from talking……………..

Autism and it’s Oddities

There is never a dull moment in this house.  Having 2 children with Autism brings us lots of surprises, both good and bad.  I just have to share two things I found once Hunter and Hayley went to school today.

I was busy straightening up the house before I went to the gym, because the cleaning people were coming.  Once finished, I decided to have a fat-free english muffin with sugarless jam for breakfast.  When I opened the cabinet to get the english muffins, I jumped back startled because this is what I found………

Yes, headless Barbie bodies and their heads.  Except for Ken.  For whatever reason, Hayley had a problem with Ken on Sunday and threw his head into the dirt in the backyard and buried it.  Hayley has a tendency to set items up and hide them in various places in the house.  She often hides the Barbies to surprise me because she must know I had “issues” with dolls when I was little.  They were creepy and I felt they would move at night….(another blog).  Anyway,  I always find this disturbing when I find hidden Barbies and also the fact that Hayley enjoys playing with them in this condition.

Hunter doesn’t really hide things like Hayley, but he often has “set-ups”.  It is not uncommon to walk into a room and find a menagerie of stuffed animals, sitting on all the Dining Room chairs, set up on the fireplace mantle, on the second floor of the Library peeking through the spindles etc.   Last night we put Hunter to bed and went back downstairs to watch a little tv.  After a while we decided to go to bed.  Now, outside my bedroom is a floor to ceiling window that gives a nice view of the neighborhood.  Hunter loves to sit in front of this window when he is waiting for someone to come over.  He can see way down the street.  As I approached this window, this is what I found….

Yup, Pikachu and company.  Hunter must have gotten up after we went downstairs to set-up the Pokemon group.  I didn’t get to ask him about it this morning because we were in a rush for the bus, but I will when he gets home. I am sure he will have an unusual story to tell me like he always does.

I have to laugh at these things and enjoy them.  There are so many difficulties with Autism and I tend to get lost in them.  But, when Hunter and Hayley come up with some of these oddities, I embrace them and know not all is bad.

Now if someone could tell me why a child would prefer her Barbies headless, please let me know 🙂

Therapeutic Horseback Riding for Autistic Kids

Hayley

Hayley just started her Spring Session of Therapeutic Riding at “Riding with HEART” (Hunterdon Equine Assisted Recreation and Therapy).  She attended the Fall Session and just loved it.

Katie is an equestrian and has ridden for about 16 years.  In addition to years of lessons, Katie has competed and done very well in many, many shows.  Katie also rode for the Villanova Equestrian Team as an Undergraduate, a team she helped found.  She also rode alumni as well.  All those years attending show after show, Hayley HATED horses.  She would yell and scream and roll on the ground.  We couldn’t get her within 10 feet of a horse.  I knew there was therapeutic riding close by our house but I never considered signing Hayley up because of her dislike of horses.

One Saturday last spring, Dave went to a local farm to order mulch and he took Hayley with him.  On the farm they have 2 Clydesdale horses, Lucy and Walter.  Hayley knew the horses names because almost daily we pass by the farm and I would say “say hi to Lucy and Walter!”.  Dave pulled into Alice and Richard’s driveway, let Hayley out of the car and she immediately ran to and climbed on the fence saying both horse’s name.  Alice, Richard and Dave came over and Alice called the horses to the fence so Hayley could pet them.  Hayley did, but started saying “on horse, on horse”.  Alice brought her into the paddock and lifted her on beautiful, white Lucy.  Dave immediately called me on the cell phone to tell me Hayley was actually on a horse, I didn’t believe it.  Dave said as soon as Hayley sat on the horse, a look of total bliss came over her face.  He wanted to cry.  Alice and Dave on one side and Richard on the other side walked Hayley around the paddock 3 times, she didn’t want to get off!  Dave brought her home and I hugged her and asked about riding the horse.  Hayley said “ride Lucy”, I was so very proud of her.

We took Hayley to visit Lucy and Walter on occasion during the summer and she enjoyed brushing them and feeding the horses hay. I decided that I would sign her up for the fall session of therapeutic riding. I signed  Hayley up for an Autism Social Skills Group.  There are 5 other autistic kids in the group.  Each child gets an aide to help them through the lesson, plus there are plenty of additional volunteers to help if needed. The kids do a greeting, play a game, groom the horses and then ride.

It was so much fun bringing Hayley to the Horse supply store and getting her fitted for riding boots.  She then got to pick out special pants and socks.  Hayley looked adorable.  She was so excited and would put her boots on everyday hoping that that was the day she was going to ride.

Hayley’s school teacher made up a chart for us showing Hayley what the progression was going to be.  Dress in horse riding clothes – greeting & game – grooming – riding – home.  Hayley needs these visual reminders of what is going to happen and when.  The first day Hayley tantrumed and screamed because she wanted to get right on the horse and not do anything else.  Finally, after 20 minutes she calmed down and they got her on the horse “Patrick” a really handsome white, gentle horse.  Hayley had the biggest smile I had ever seen while being led around the ring.  When it came time to get off the horse, yes! another major tantrum.  As the weeks went by, Hayley became acclimated to the schedule and did extremely well.

Once the session was over, Hayley continued to come home from school on Monday’s and want to get into her riding gear.  I assured her we would sign up again in the Spring.  Now whether she understood or not, she finally stopped asking for “horse”.

Last month I signed Hayley up for the Fall Session and it started yesterday.  She was very excited getting dressed, putting her riding clothes on.  When we got there, Hayley wanted to ride immediately, MAJOR tantrum!  She screamed and screamed, kept trying to run away etc.  It was upsetting of course, because of her severe behavioral problems, Hayley was the ONLY autistic child there tantruming and being held back.  If I let go, she would have run to a horse and start picking up one of their legs, why she does this to animals, I don’t know.  I do know doing this to a horse is dangerous.  Finally the aide took over, Hunter and I were sitting in the car reading and could hear Hayley’s screams bouncing off all the walls.  Eventually they all came outside to ride the horses.  As I watched, Hayley refused to get on “Patrick” and was once again, screaming and rolling on the ground.  No one knows how very tiring and upsetting this is.  Everyone, and I am talking parents of autistic kids were staring and shaking their heads.

I was beckoned over by the trainer and with head held high, I walked past all the parents and up to Hayley and spoke to her for 5 minutes.  She finally calmed down and got on the horse.  From then on, Hayley had the best time being led around the ring, a beautiful smile on her face.  Iam hoping that next week there will be less screaming and yelling.

When you have a child with Autism you cannot predict each day.  What they are happy with one day, they are angry about the next day.  A parent tries all they can to help their child and try to bring some sense of normalcy.  These kids know more than you think but just can’t communicate their feelings or needs.

Some of the benefits of Therapeutic Riding are:

Eye/hand coordination – Balance – Muscle strength – Socialization – Body awareness – Self-control – Self-confidence – Problem solving – Fine motor coordination – Sensory integration and Communication.

OUR WASHINGTON DC ESCAPADES – Part 1

Washington DC, our nation’s capital.  Millions of visitors flock to DC to tour the city and that is what Dave, me, Hunter and Hayley did May 27th thru June 1st, 2010.  We were excited, Hunter and Hayley were never there and the last time Dave and I were, was with the 4 older kids many years ago. Hunter was the most excited because he couldn’t wait to go see the Smithsonian Museums which he has talked about the last few years.

 It was Memorial Day weekend and we knew it would be crowded but didn’t anticipate the 500,000 motorcycles plus riders that would be there.  It was a nightmare.  At times streets were closed to let the bikes pass. And in addition, the weather was sunny, hot and humid in the mid 80’s, not conducive to the massive amount of walking Dave was expecting out of all of us.

Our drive down was uneventful until I realized I printed out incorrect directions to the hotel and we wound up in the WORST section of DC.  To say Dave was a bit annoyed is and understatement, plus Hunter and I were terrified!  Hunter kept asking “are we going to survive this terrible drive?” I tried to say in a positive way “of course, no worries” but he noticed my white knuckels grasping the dashboard and didn’t believe me for a minute. After back tracking, we finally made it to our hotel.  Whew, what a relief!

We stayed in the Grand Hyatt Hotel which was wonderful.  The location was within walking distance to the Smithsonian, Capitol building, Washington Monument etc.  Also, the Metro was under the hotel so this was very convenient as well. Once in our room we did one of Hayley’s all time favorite things……..order room service.  Don’t ask me why this thrills her but it does.  Hayley always orders mac and cheese with a coke. Whenever we stay in a hotel I get to sleep with Hayley and Dave with Hunter.  Hayley and Hunter DO NOT do well sharing anything together let alone a bed. Now let me just say that when you sleep with either of them you sleep with about 10 stuffed animals as well.  Yes, daddy lets them bring in the car whatever they want :).  By the time Hunter and Hayley are asleep, Dave and I find ourselves sleeping (or attempting to sleep) on the very edge of the bed and with no blankets. I spend a good hunk of each night rolling Hayley to the other side of the bed only to find her back again.

Day 1:  We went to the Museum of Natural History which Hunter LOVED.  We took lots of pictures and Hunter took video of the entire museum. Hayley did ok, it was very loud and overwhelming so I had to sit with her in quiet areas once in a while.  After the museum we went to the Botanical Gardens.  We had never been there before and I really liked it.  The kids on the other hand were bored AND wild. Hayley was in every water puddle, garden, water feature etc.  She was soaked from head to toe! I gave up trying to stop her. Hayley looked quite a mess and we did draw curious and sometimes nasty stares from people.  With living with Autism, Dave and I have grown thick skin and really don’t care what people think.  Oh, on occassion if I am in a pissed mood I will comment, “don’t judge until you live in our shoes”, “be happy your child doesn’t have Autism” or even one time “F off”, I will tell you I wasn’t proud of that moment. We finally got back to the hotel where the kids changed into bathing suits and we brought them to the pool. 

And what did we do again that evening? Order room service except this time Hayley ordered mac and cheese AND french fries………

Uhhhh tough afternoon and the kids have only been home less than an hour and a half

I was very busy today trying to catch up on a lot of things that have been pushed aside the past few weeks because of problems. Laundry, paperwork, organizing all the school papers that were thrown on my desk in a haphazard pile, among other things.  I did squeeze in my treadmill as well. 

First Hunter came in from school.  Because of his obsession with all things Pokemon, we pre-ordered the “Black and White Game” that was released yesterday.  We were under the assumption that he would get it at least today, the day after the debut.  Wrong.  When I looked my order up at Amazon it said he would receive it between March 9th and 15th.   This is not acceptable, Amazon does not understand what this type of delay does to Hunter.  If we didn’t pre-order it, I could have bought it yesterday.  I started counting down the minutes until he got home because I knew exactly what I had to endure.  Sure enough, Craig got Hunter off the bus and as Hunter ran into the house yelling “mommy, mommy where is my new Black and White game?”  I had to give him the news…..uh, well I checked at Amazon and it said you will receive the game in a few days (gulp, a little white lie on my part).  Yup, it happened.  WHHAAATTTT? he screamed, it was a PRE-ORDER, I SHOULDN’T have to wait.  He bursts into tears “why is life so hard?” he says.  “This is a nightmare, a tragedy, why do these unpleasant things always happen to me?”  Ok, I know, he is being a bit dramatic, but having Aspergers, he really does mean all this.  Everything is black or white, there is absolutely no gray area for a person like him. 

Mind you now, after working like crazy all day, and before Hunter got home from school, I decided to watch the season opener of Celebrity Apprentice on my lap top. I was beat.  I had watched most of the episode before Hunter got home, but had to pause when he first got in. After my bad news to Hunter about the game, and as he is ranting and raving, I am still trying to throw my eye on the show.  I did have to keep stop and going.  I suggested getting tissues, having a snack, drink, quiet time etc., just so I could finish the last 10 minutes of the show before Hayley got home. Didn’t work, Hunter was in the kitchen crying and crying while eating goldfish and getting crumbs everywhere.  I went in and tried to console hime, bribe him etc.  Finally, he calmed down and that is when I heard the chime on the laundry room door……..Hayley is home………

She throws her coat and backpack on the floor, runs into the kitchen throwing open cabinets and the refrigerator, she is ravenous when she gets home.  It is always a whirl wind and I know I have to stop it and go backwards by bringing her back to the door, have her hang up her coat and backpack, go to the bathroom, walk nicely into the kitchen and have her appropriately ask for a snack using her words or a combination of sign language. Whew, let me just say, it doesn’t go quite as smoothly as I would like, but beggars can’t be choosers.

Hayley chooses Progresso Chicken Noodle Soup.  I pour this in a bowl, in the mean time she is grabbing last night’s spaghetti out of the refrigerator, opens the top and starts shoving handfuls of spaghetti into her mouth. I am able to get this away from her as she is yelling “PASTA IN SOUP, PASTA IN SOUP”. I get her to sit down and promise if she has a quiet mouth, hands and feet, I will put some extra noodles in her soup.  Hayley gets semi-quiet but is yelping.  Ok, soup is out, I give it to her, with spoon, fork and a ton of napkins.  Meanwhile, Hunter is back in the kitchen wanting to know why exactly Amazon did not send out the game yet, why does Craig curse, when will daddy get home, can he take a bath etc…………..

Right now I am counting my breaths and trying to tell myself to calm down.  Hayley finishes her soup, puts her bowl in the sink and proceeds to take the faucet sprayer and wet her whole head!  Water is everywhere.  I yell to Hunter to get towels, Hayhley starts to run away, slips  in the water and falls on the tile floor.  Hayley is screaming “BOO BOO, BANDAID, BANDAID! I tell her she doesn’t need a bandaid, just get up.  As Hunter is running in the room I yell “STOP”…..too late, he is down for the count.  Now Hunter is screaming “I HATE THIS FLOOR, I HATE HAYLEY”. Both kids are totally wet.  As I get the towels from Hunter and place them on the floor, Hayley jumps up and grabs the Kerug (coffee) water container and proceeds to throw it across the room.  Water is everywhere, Hunter is wrestleing Hayley on the wet floor, she is hysterically laughing, they are soaked, I literally am using a whole brand new roll of paper towels trying my best to soak up the water………………..

Ok, cleaned up, won’t go into the rest of the gory details.  Everyone is calm for the moment, I tip toe to the  bathroom, all that water has made me want to go :).  I run in, leave the door open and hear “HAAYYYLLLLEEEEYYYYY!!!!  I get out in record time to find that Hayley has decapitated 2 Barbies and took all the stuffing out of her favorite arctic fox stuffed animal.  Yes! this happened in less then 4 minutes.  She is fast. I am exhausted!  I look at the clock and realize Hunter has been home only 1 hour and Hayley 30 minutes. 

This type of thing pretty much happens EVERY day.  I am able to write this now because Hunter is helping Hayley on the computer.  She likes to watch the Disney World rides on You Tube.  Yes, Hunter is loosing his patience but I bribed him with the Ipad and that seems to placate him for now. Hunter is still loudly asking me why he didn’t get his game but I am tuning him out. I am getting this blog written quickly and hopefully when done will then see who gets fired from Celebrity Apprentice.

After an afternoon like today (really only 1hour total), and not knowing what is in store for me until bed time, this is the reason I watch “crap” tv.  I definitely need an escape…….

Tribute to Autism Parents

First let me say, I did not make this video.  It is from You Tube made by another parent. I saw it about a year ago and just loved it.

The video is a tribute made to parents that have a child or children with autism.  The song “Stand” by Rascall Flatts is absolutely perfect.  The words tell exactly what it is like for a parent raising a child on the spectrum, it is a daily battle for all of us but at the end of the day we HAVE won that days battle.

STAND

You feel like a candle in a hurricane.  Just like a picture with a broken frame.  Alone and helpless, like you’ve lost your fight.  But you’ll be alright, you’ll be alright.

Chorus:  Cause when push comes to shove, you taste what you’re made of.  You might bend til you break, cause it’s all you can take.  On your knees you look up, decide you’ve had enough.  You get mad, you get strong, wipe your hands, shake it off.  Then you stand, then you stand.

Life’s like a novel with the end ripped out.  the edge of a canyon with only one way down.  Take what you’re given before it’s gone, and start holdin’ on, keep holdin’ on.

Chorus

Every time you get up, and get back into the race.  One more piece of you starts to fall into place.

Chorus

The words are very true. Autism is autism, so there is no end. We as parent have no choice but to “STAND“

The Writing Room…

As I have said in previous blogs, my son Kevin’s old room has been transformed into a guest bedroom/my writing room.  I LOVE it in here.  It is so nice and quiet on this end of the house. There is a bathroom next to this room and I can shut and lock a door that separates me from the rest of the house.  It is like I am in another world.  Even if others are in the house, I can barely hear anything.

 

Now mind you, I CANNOT be in this room if Hayley is home, her Autism does not allow this.  Oh she would probably love for me to be this far away from her.  It would enable Hayley to spray water all over the kitchen, dump all the soap she could find, rub cream all over her body and in her hair, raid the food cabinets and refrigerator, get the picture?

When I say others, this really means Craig and his multiple friends.  His friend Andrew has been living here for months which has been good for Craig.  But, Craig has many more friends that may as well move in because they are here so much.  Hence,  the peace and quiet I crave.

Back to the room itself.  We bought an antique dining room table that is called a “slide table”.  On either end there is a leaf that sets directly under the main table.  If you want the table to expand to 90 inches, the leaves slide out and push up to extend the table size.  We put the table in front of double windows that looks out on a beautiful view.  We live on a mountain so our house is high up.  I can look down on my other neighbors properties and in the winter I can see the tennis center and bank all the way down on Route 31. 

 

For years, various people said I should write a book because of all the unbelievable things our family has been through.  We have experienced, good, bad, mediocre and not so great things over the years.  I don’t know if I am capable of writing a book.  Last year Hunter, Hayley and I went to Florida over Easter break to visit Katie and Bill.  One night we all went out to eat at one of our favorite restaurants “The Surf”.  While there, the topic of me writing a book came up.  I told Katie and Bill I didn’t know if I could do this.  They suggested I start writing stories of each event rather than an ongoing book.  It was a good idea, yet I know how limited my time is and of course didn’t follow through. This past December while visiting Florida once again, Katie said she and Bill were going to blog and why don’t I consider it.  I did and thought at least a blog isn’t formal, yet I can write short stories  on it.  I have been plugging along slowly but surely.

Since Kevin and Devon (my son and his girlfriend) knew of the possibility of me writing of a book of short stories, for Christmas they gave me a big box full of goodies.  They copied and framed six various pictures of the family and wrapped them, gave me a beautiful leather journal to write my story thoughts in, an ink and quill writing set, and finally a small water feature to put on my desk to sooth my mind and let me think.

 

 I brought up a chair, put nice yellow comfy pads on it and added a blue cashmere wrap in case I got chilly.  There is a bed in the room for when I want to take a nap in the afternoon (NOT)!  Pencils, pens, paper and not to forget……my computer.  I have enjoyed writing, it is like a stress reliever.  Whether the blogs are read or not, the writing is therapeutic for me. I just have to squeeze writing in when the kids are at school or occupied.

I type on my laptop, so this is on the desk as well.  I do need a printer/scanner there as well, but this will come in time.  The first day I sat down at my laptop in my special room, I knew I had to pick the “perfect” screen saver.  I did, and as I sat there I thought “it doesn’t get better than this”! 

 

 

 

Jersey Shore

 

 

Bits and Pieces

It has been a while since I posted a blog.  I have had a busy week and once the deadly duo comes home from school, my day morphs into their afternoon and evening.

Valentines Day was last Monday, but we celebrated it on the weekend because of Tax Season.  On Friday night Dave brought me home a beautiful planter, and Saturday night he brought me flowers and a balloon.

On Sunday, Dave and I exchanged cards, plus I got him”The Girl with the Dragon Tatto0″ by Stieg Larsson, on cd.  ‘This series was great to read.  During Tax Season, Dave likes to listen to audio books during the long drive to and from work.  Right now he is listening to “Shantaram” by David Gregory.  This book is over 1,000 pages long, or 36 discs, yet it is an excellent read, one of my all time favorites.  We gave Hunter & Hayley a card plus a small gift.  We would have had a mutiny here if we didn’t give them something.  EVERY DAY for the past 3 years when Hunter walks into the house after school, the first words out of his mouth are,  “Did you get me a surprise?  Did I get mail?”  Now I will admit I do get Hunter & Hayley something from time to time and surprise them after school.  And because Hunter dearly loves to read (non-fiction only), we do order books from Amazon that are sent to the house. BUT he doesn’t even get something every week or month for that matter.  Hayley is on the gift bandwagon as well.  She loves to open gifts, even other people’s. When we went to Florida after Christmas, Katie had many beautifully wrapped presents placed neatly under the Christmas tree. They all had pretty shiny paper and homemade bows.  It looked like the tree should have been in a magazine. There were gifts for us but also gifts for people that needed to be shipped.  I don’t think we were in the house 10 minutes before Hayley ran over, picked up a present and we hear RIIIIIP.  It was open, since it wasn’t for her, Hayley tossed it back under the tree and walked away. After 1 day, we removed the presents to the extra bedroom and locked the door.  I need to say although the tree looked beautiful, you could not touch it, because if you did touch it even slightly, the needles would fall off and the ornaments would tumble to the ground.  One time when Hayley was touching the tree this happened and Dave asked, “This tree is bone dry, when was the last time it was watered?”  Bill was standing there and calmly replied, “oh about 2 or 3 weeks ago.”  We were shocked (not that we should have been, Katie + Bill + plants = …….that’s for another story).  Dave told Bill that he and Katie really needs to buy an artificial tree.   Although the same thing happened the Christmas before, this year the tree was in extremely bad condition!  Another reason they need an artificial tree is that it becomes so light that Hayley can toss the whole 7 foot tree across the room, lights, ornaments, the whole ball of wax. One afternoon half way into our stay, Hayley was having one of her REALLY BAD uncontrollable days. Dave told me to go out on the deck and read so I could get a break, he would watch the kids.  Not even 10 minutes went  by when I heard “CRASH” and Hayley hysterically laughing.  I walked into the house, and there was the Christmas tree laying across the couch….Hayley was jumping up and down on the other side of the couch and Dave was just standing there staring.  He was just across the room in the kitchen when Hayley popped out of her room and just threw the tree!  Sooo Dave and I stood the tree back up, took the non broken ornaments and lights, put them in a box, took the broken ornaments and put them in another box to see if Katie can salvage any, and Dave dragged the tree out on to the deck and threw it over to the ground.  I won’t even go into how long or how hard it is to clean up a million tree needles, especially when they are imbedded in the couch. Let’s just say, the Christmas before this one Hayley did push over the tree but we were able to bring it intact onto the deck where it stayed for the duration of the trip.

Many other things went on during the week.  By biggest accomplishment was my diet and exercising.  As of last Thursday, February 13th I had lost 12lbs!  I exercised 6 out of the last 11 days, which is huge for me.  I have gone to the gym twice a week for the weight training and when I am home I have done my treadmill here for 45 minutes to 1 hour.  I am so proud of myself, I haven’t felt this positive or motivated for a very, very long time.  I wish  I went on medication much sooner.  I was so very resistant to it.  Finally, in December when I went to my family doctor absolutely falling apart, crying and crying, she told me that medication for depression is not a bad thing.  I had been diagnosed clinically depressed, post-traumatic stress syndrome last year, but I wouldn’t listen to the Psychologist who kept urging me to go to a Psychiatrist to get on medication. I was so down and feeling helpless that I decided to find a Psychiatrist.  The thing is, this was no easy task, every doctor I called had a 4 month plus waiting list!  I didn’t want to wait this long.  There was one more doctor to call, the office told me the doctor had a 4 month wait but could I explain what was wrong.  After listing EVERYTHING, she said the doctor would call me back.  I know God had a hand in this because not even 5 minutes later, the Psychiatrist called me, had me explain again, then told me she had a cancellation for the next day would I want to take it.  YES! YES! I wanted to take it.  That was 8 weeks ago, after tweaking the medications I know we are close to the perfect dose.  I go back next week to see her.  It took about 6 weeks to kick in but the results are amazing.  I feel alive again, happy, I am starting to like myself.  I want to take care of myself and be there for my family, my husband.  I started almost 26yrs ago raising children, homeschooling, being faced with Austism, other issues that needed to be dealt with using tough love that we hope someday will work, etc.  I decided to stop looking back and doing the, coulda, shoulda, woulda……face forward and start living each day again.  Autism will never go away for us, but I can make choices on how to handle things in life.  I am not expecting perfection, I am expecting to live life to the fullest for the first time in a looooooong time.

My Days – Yesterday & Today, the Good and the Bad

Of course, ANOTHER snow day.  I am sure everyone is tired of my complaining about the cold, snow and snow days, but in all honesty they are very draining. Yesterday was a snow day and I knew by yesterday afternoon that I was in deep trouble for today.  I really didn’t want a recap of the previous days occurrences. First, I knew when I got up and walked down the hall to Hayley’s room it was going to be bad.  As Hayley watched me approach her room, that sly little smile appeared on her face and i KNEW……as I tried to run the final few feet to her room (mind you I am definitely not a runner, so maybe it was more like a fast shuffle) it happened.  Hayley jumped up on her bed, squatted and peed, and of course it had to be that first satisfying pee of the morning. Now, I cannot say anything to her or give her any type of facial expression because she is looking for attention.  I will tell you that in my head I had a volcano exploding, but outside I was calm as could be.  As Hayley laughed and kept trying to look in my eyes, I took off the sheets and blankets, got towels to soak up the mess, resolve to clean, more towels to soak and then brought Hayley to the bedroom her clothes were in.  I had her get dressed and then help me bring all the wet bedding and towels down to the laundry room. Breakfast went ok until I told Hayley eating was all done, this is NEVER pretty.  After screaming, throwing her spoon and yogurt cup across the room, rolling all over the floor kicking everything in sight and ultimately smashing my coffee cup on the tile floor, she calmly walked into the Sunroom, sat on the floor and dressed her Barbies.  Hayley is a whirlwind, all this lasted for about 20 minutes and as I was picking up the first thing, she went to the next. Now mind you, as all of this was transpiring, Hunter is in the Great Room playing a Pokemon game on WII, he is saying “mommy look at this, oh isn’t he cute, would you like to play this game, why is the Open Season 3 only 78 minutes long”?  I am pretty much going hmm, umm, uhha etc., hearing but not hearing. There were more tantrums to come, a lot of hysterical laughter which cumulates into some sort of destruction –  breaking dvds & videos, taking off barbie heads, breaking crayons, spraying water, smashing fruit, the possibilities are endless.  Then there is the moaning, moaning, moaning……….this can and did go on and off for hours.  With every moan you can feel your stomach tightening more and more into a knot.  Again, this behavior must be ignored (or so they tell me for now) because Hayley thrives on attention and control. Every once in a while I will ask her to use her words so I know how I can help her, but mostly she continues to moan.  It probably sounds like I just let her run amuck, but that is not true.  In the mean time I am trying to engage Hayley in different things, it is difficult because I must be with her every minute, I cannot let her out of my sight for a second or all hell breaks loose.  I have many, many other things to engage her in.  I have different types of arts and crafts, games, puzzles, new movies, toys etc.  I spend sooo much time with Hayley trying to keep her occupied which is a feat in itself, not including the behaviors.  I DO have other obligations in the house to my husband, other kids and chores.  I try to squeeze Hunter in every here and there, do laundry, clean up, make beds, dishes, cook………………………… Plus, I must address Hunter’s needs because of his Aspergers.  I will tell you that he has done a wonderful job the last several days teaching Hayley how to use the mouse on the computer.  He has shown her different websites she would be interested in, although she can’t type in the web address, Hayley tells Hunter what she wants and he puts it up for her.  He is very patient (which really isn’t one of his virtues) with Hayley. Don’t get me wrong, he will come and tell me his head is pounding (my line) from too much Elmo coloring pages or he really is getting sick and tired of the Donald Duck cartoon, but all in all he has been great with her.  All of this is exasperating, stressful, upsetting, tiring, I could go on and on, yet I love them with my whole heart and try to do my best for them and advocate for them.

HayleyHunter

 

 

 

 

 

Hunter

 

 

 

 

 

 

 

 

 

 

Today I would say is somewhat better.  I woke at 5:00 to the Honeywell Instant Alert System telling me there was not school.  Dave got up at 5:20 to go to work.  I heard him wake up Craig to help him dig and salt to get his truck out of the garage.  We have an alarm and we have the door chime set…….Beep, beep, beep, beep. Then I hear Craig coming back up the stairs…BOOM, BOOM, BOOM, of course he left the hall and kitchen light on which I could see illuminating into the foyer and my room.  Ok, I dozed on and off when finally at 7:00 I knew I needed to get up.  I threw a prayer to God “please keep my family safe today and PLEASE get me through this snow day”.  I took a deep breath, got ready and faced the next challenge. Hayley did  not wake up until 8:30 which is a miracle, I enjoyed two cups of coffee while Hunter STILL was asking me WHY IS OPEN SEASON 3 ONLY 78 MINUTES LONG WHEN THE FIRST AND SECOND WERE 95 MINUTES LONG!!!!  Honestly, I had no answer that satisfied him, I just wanted my coffee, I had to tell him that My Head Is Beginning to Pound………………

 

Hayley gets up, quietly comes down stairs, no accidents, I bring her to the bathroom.  Except for eating some toilet paper, all went well.  She had breakfast and a drink but when she asked for more to eat and I said not now………………………WOW.  I was dreading the day. Hayley had a few tantrums, then started laughing and when I looked over at her while I was loading the dishwasher, my eyes popped open wide! She had managed to sneak an avocado and totally smashed it and mashed it ALL over her baby doll (with a hundred crevices) and herself.  She is hysterical, I walked over, took the doll, wrapped it in the towel and brought Hayley to the shower.  Not pretty because she wanted a bath, but I stuck to my guns.  I am really hoping some day I can say “Hayley go take a bath/shower” , that is not in the cards right now.  Let me tell you it isn’t easy trying to get a very wet, non compliant, extremely slippery, tall, sturdy child out of the shower.  Once I did we went through the drying, getting dressed, hair drying ritual.  I won’t even go into details, it is exhausting.  When we got downstairs, Hunter did offer to help her on the computer which allowed me to go back up to the bathroom to clean up the mess.

 

While Hunter was helping Hayley on the computer, I got a call from a florist saying they had a delivery for me.  A half hour later I was given the most beautiful yellow flower arrangement.  It was from my Kevin and Devon.  i The card said that there was only 4 more weeks until Spring and they hoped today was my last snow day. This really cheered me up.   I was so touched, it was such a nice surprise. I have the best children in the world.

 

 

I won’t bore you by going into the rest of the day because it really was much of the same thing.  Even out of the difficult situations that occurred yesterday and today, I was given such a nice surprise that really uplifted me.  A very good thing that has come out of this Autism journey is that it has made the older children more aware and compassionate.  There have been many times over the last several years that each of my older children have done something to uplift me, even if it was just a hug.  They understand the journey and are there to support Dave and I as well as each other.  The thing is, when you have children with disabiities, you tend to lose friends and family.  They don’t understand and I guess don’t know what to do or say.  It is easier not to mention your difficulty or make believe it is not there. We do not get invited to anyones house and I don’t know if I really would want to because a new place is very challenging for the disabled children so it makes it harder on the parent, yet the offer would be welcomed  But, and I have heard cancer patients say this before, maybe just a phone call to say “hey how is it going”, maybe let you spill out your frustrations and fears, or just talk, about the weather, current events or even the “Jersey Shore”. Don’t be afraid, we will not burden you, we aren’t going to ask you to babysit our children, we just want to know there is someone out there that is just willing to talk even if it is about the weather.   So, if you do know a family out there that is in a position like ours, support them, let them know they are not alone.

After the flowers, and another tantrum, Hunter and I got to have a Skype visit with Bill Shaffer, Katie’s boyfriend, who is studying at Le Cordon Blue in Paris.  He has been there for a month and it was the first time we got to see and speak to him.  He filled us in on life in Paris (hopefully I get to go in July when Katie is there), the good and I difficult…..it’s the French, does it surprise us Americans? It sounds wonderful and it is an opportunity of a lifetime.  He looks happy, he is very busy and has been practicing his French.  We had a nice visit (although for all of Hunter’s busting to talk to Bill, he said like 3 words…..typical Hunter).

Lastly, cherish your children, don’t take them for granted.  Enjoy the everyday normal things they can do.  Like I have said before, we took these things and milestones for granted with our older children.  But now, we would give up everything if Hayley could have girlfriends, go to birthday parties, know who Hannah Montana is.  Or Hunter to be able to play baseball, go to socker, have friends come over without being overwhelmed.  In this life, none of us should tak anything for granted.

Family

NYC Marathon for Autism Speaks