Vacation

This past Monday, we went to Hot Springs, AR for a short vacation.  We had been showing Jake pictures of where we were going, talking to him about it, I drew pictures for him to help him understand what it was we were going to be doing on vacation.  But the morning we were getting ready to leave, Jake looked confused, scared and seemed unsure about this whole vacation thing.  When we told him we were going on vacation he would cry and whine saying “no vacation”.  Finally he looked at us and said “Jake not go on vacation, Jake go on field trip.”  Who knew…sometimes I want to read his mind so I would know the right thing to say!  Although he has been on a vacation before he probably doesn’t remember since he was only 2 1/2.  But he has been on a field trip recently so he could relate to that.  So from then on we called it our field trip.  Jake was great on the 4 hour car ride.  He has always loved riding in the car and staring out the window.  He is quiet, looks out the window and you might forget he was in the car except for the sounds coming from his IPad.  After we checked into the hotel we told Jake we were going to see some trains.  This is when I want to know what he is thinking because even though the boy LOVES trains, especially Thomas the Train, he still became upset and said that he wanted to go home.  We went to this little building to see some miniature trains and Jake cried, he didn’t want to go in, he didn’t want to see the trains he wanted to go home.  He looked scared and confused and even though I knew we needed to show him what we were talking about part of me wanted to take him home.  He needs the exposure to different situations, it is good for him but for those minutes when you can see the fear on his face and in his eyes it breaks my heart and all I want to do is make that look of panic go away.  Once we were inside Tiny Town Jake relaxed and started to enjoy himself.  Of course, like with most kids, when it was time to leave Jake didn’t want any part of leaving he wanted to stay and see the trains.  For the remainder of the trip Tiny Town was all Jake talked about!!

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The next day we went to Magic Springs which is an amusement and water park.  Jake again said he wanted to go home and again he looked scared!  He rode 2 rides the first was the log ride.  He seemed to like it okay, he looked a little scared but because he could see his sister and her friend he thought it was fun.  The next ride was another type of log ride but this one made a loud noise and because recently Jake has become more sensitive to really loud noises he didn’t like this ride and was done.  Anytime we showed him other rides he could ride he would watch them, they would make a loud noise and Jake would cry and say he wanted to go home.  He was most content to be in his stroller and watch Allie and her friend get on and off different rides.  Later we went to the water park.  We took him to the little kid area’s and like before he was scared.  But once we got Jake in the water he was having the time of his life.  He loves being in the water, he loved having all of us watching him go down the slides, and swim with him.  It was so much fun and what made it fun was seeing that look of anxiousness and fear fade away to pure happiness!

I am glad we were able to get away for a few days and happy that we were able to help Jake through some scary moments.  Since we started this journey I have seen a lot of sides of Jake.  He has had a lot of fears and tears but with each new task or activity that fear passes.  As hard as it is on me seeing him so afraid and anxious, in the end it is worth it.

We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot.

Eleanor Roosevelt

 Overall he was happy and loved being on his field trip!!  By the end of the trip Jake decided we could call it his field trip vacation!!

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Grandma & Grandpa

The last time John’s parents saw Jake was November, 2012.  When Grandma and Grandpa came into our home Jake ran and hid.  Jake cried and seemed to pretend they were not here.  Eventually he warmed up to them and would allow them to hug him.  Jake was not talking much at that time either.  He said a few words and if he did speak it was to repeat a word you just said.  Jake’s routine was out of sync and he responded with meltdowns.  July 2013, eight months later, it has been a different scene.  Jake was excited about them being in his home, he jumped and squealed.  Jake would give hugs frequently (when asked) and would respond to questions they asked with his own words.  First thing in the mornings Jake would immediately ask “Grandma & Grandpa coming today?”  I would say yes and that they would be here in a few minutes.  Jake would respond with a jumping squeal saying “Grandma & Grandpa be here in few minutes!!”.  Past visits were hard on Jake, the change in his routine, more people in our home, more noises…more of everything.  I was always uneasy, never knowing when the next meltdown would come, never knowing how he would respond to their simple ‘hello’.  Fortunately Jake is progressing; he has loved having them here, he loved it when they would say hello, he has given lots of hugs, allowed them to kiss him, he allowed them to hold his hand and wasn’t glued to my side during their visit.  Jake has loved having his grandparents here!  Jake’s progression made it a much better visit for me and, I would think, made their trip even more enjoyable!

Thanks Grandma & Grandpa ~ we love you!!!

July Visit
July Visit

days like these

You know the saying ‘If mamma ain’t happy, nobody’s happy.’  In our house the saying goes ‘If Jake ain’t happy, nobody’s happy!’ 

The morning begins like any other, Jake is happy, he gets out of bed, we walk over to open his curtains.  I ask him “Do you think it is sunny or cloudy?”  He cries.  I ask him in a cheerful voice again and tell him to look and tell me what it is like outside.  He cries and says “no sunny, no cloudy”.  I open the curtains so we can look outside, he smiles and I say “look, it is SUNNY, yea!”  He cries and says “no sunny”.  I sigh.  It is time to put his underwear on (he still sleeps in a diaper) and I pick a pair thinking I don’t want to give him a choice and make him cry.  I am wrong, he cries.  He wants to choose but when he does he cries, ???  I get the underwear and he cries, saying in a half cry half whine voice “not that one”.  I pick another pair and he cries but puts them on.  His shirt is wet, I pick a shirt but apparently it is the wrong one again….  He has been up for 5 minutes and I am already tired.  We go into the den and he smiles.  He spies his trains and is happy and then cries.  He is looking for something but unable to tell me what he is looking for.  He picks up his trains and throws them.  I go to him and ask him to tell me what he wants, he doesn’t know he just cries, runs around and screams.  I get him some milk and cereal.  He is happy, for a moment, then cries because a drop of milk has landed on the shirt I just put on him.  He runs and screams tearing at the shirt.  It has now been about 15 minutes, I look at the clock wondering if I could just put him back to bed and try this again tomorrow.  We do our PT exercises, we do our sensory exercises which include lots of heavy lifting, full body massage, tight squeezing and some other tricks I have learned along the way.  They help but Jake is still out of sorts.  I put in a movie but as you may have guessed I picked the wrong one.  He is crying again.  The day goes on like this.  We do have moments of happy but those moments are short.  We go outside to play, we get in the car to go to the store or run errands.  But those are tricky on days like these; too many people, too much stimuli, too much of everything and he cries.  By the end of the day I am exhausted.  I am mentally and emotionally worn, all I want to do is shut down.  I pray that the next day will be easier, that I will react differently, have more patience, strength, be nicer, happier.  I pray that I will understand Jake better, be able to help him, be able to console him and to be able to figure out what he needs.  Some times days like these come in threes and on day one I prepare myself for the next two days.  Hard doesn’t describe it really; yes it is hard but more than that I hurt.  I hurt for him, I hurt that I can’t meet his needs during these moments, I hurt because I can’t make it better!

If you have a minute listen to the song in the link below “Worn” by Tenth Avenue North.  I heard this song a few months ago after a particularly hard morning.  It is one of my favorites and really does help me on days like the ones I just wrote about.  One of the lines in the song says “I’m worn even before the day begins”.  I am sure we can all relate to that feeling at one time or another 🙂

Worn, Tenth Avenue North

 ‘I know I need to lift my eyes up
But I’m too weak
Life just won’t let up
And I know that you can give me rest
So I cry out with all that I have  left’

Editor’s Note:  I am sharing this so you know Jake’s struggle as well as mine.  Also so you understand what this disorder is like on certain days.  I am not searching for sympathy just your prayers as we face each day.

Quirks

There are times when I just don’t get it, I don’t get Autism, I don’t get this disorder and there are times I just don’t get Jake.  Sometimes we just don’t understand and because of human nature, I guess, I want to figure it out, I want to know why.  I want to know why I have to do the same thing every night at bedtime, why can’t we mix it up a little and do something different each night?  Why are there so many things we have to do the same and if we veer off the path it becomes chaotic, and well, it becomes ugly?  Jake’s quirks and OCD tendencies are funny at times and at other times not so much.  Because if I forget to do something a certain way or say something a certain way there is surely to be a meltdown.  Some changes Jake handles well.  And the changes that usually go well are the ones, beforehand, I stress over the most.  Recently I told you about switching his drinking cups, we moved from a sippy cup to cups with straws.  He loved his cups, he knew what to expect from them and they were familiar.  He transitioned with little tears.  I expected more tears, more tantrums and more verbal “no’s”.  Then there are the things I think will be easy and to my surprise they are not.  It can be very frustrating to say the least.  We change-up our routines from time to time, we switch out his toys and try to keep things from always being the same because as you know things in the world around us change all of the time.  If I don’t help him adjust now he is going to have a really hard time when he is older.  But it is not fun, and sometimes…well, I am just going to say it, it is hard and a lot of the time it’s weird!  Don’t get me wrong, I love the quirks Jake has, it is what makes Jake, Jake.  Jake has quite a few quirky behaviors but one that stands out in my mind right now is how he mixes his English with Spanish.  He will combine words when he talks and sometimes it is just gibberish.  Before Jake could talk he would ‘talk’ in this strange language, we called it Jakelish.  It was and is funny to us, we are used to it but for people outside our home they may think it is odd.  Should I care?  Should I correct this cute little quirk?  The answer for us is yes, and we work on it.  I was just telling him yesterday to use his words so I can understand him and know what he wants.  He wanted something.  He needed something.  He began to cry.  I didn’t know what it was he needed or wanted.  I found myself getting so frustrated and well…I was getting mad.  I had to walk away.  But whatever it was, he wanted it badly so he followed me into another room and kept saying “I want cakekutkes”.  Huh??  He hates cake so I knew it wasn’t cake but I threw it out there, “Jake, do you want cake?”  Instant crying from him; that was not it.  I went through everything I thought it could possibly be and in the end, after a pretty big meltdown and tears (from both of us) I figured out he wanted a snack.  Hmmm, cakeutkes = snack…got it!  Who knew???

Another little quirk Jake has comes at bedtime.  Jake’s bedtime routine is something we have worked on quite a bit. He now loves it because he knows what to expect.  For the longest time he hated to be read to, he wanted us to just put him to bed and walk out of the room.  He might cry if we said anything to him so usually our routine was to change his diaper or take him potty, put him to bed (usually without saying a word) and shut the door.  That was hard.  I wanted to hold him, rock him, read to him, sing to him but couldn’t handle it, he wanted to be left alone.  I am happy to say that over the past year this has changed.  He now loves for us to read him a story and sing songs.  But when he gets into his bed and I am ready to go out of his room (I found out the hard way), I can’t say good-night.  It took me a while to understand why all of a sudden he started crying when I kissed him and said good night.  He would cry, scream and say “no good-night!”  I didn’t get it, I didn’t understand…what could I possibly be doing wrong?  I thought he wasn’t ready for bed, thought maybe I needed to change the time we put him to bed.  That wasn’t it, it didn’t matter what the time was he would cry.  Not unusual for some kids, but it wasn’t the cry of a kid who wasn’t ready to go to sleep.  It was a different cry, like something was wrong.  This is the kind of stuff that wears me out, it isn’t so much the physical aspect of taking care of him it is the mental stuff.  Trying to figure it all out.  One night, by chance, I thought I would say “see you in a few minutes” as opposed to good night.  It worked!  No tears, no crying!  He just repeated back to me “see you in a few minutes”, I shut the door and he was good.  What?!?  Seriously, all of those weeks of crying this is what it took???  So now, we don’t say good-night we say ‘see you in a few minutes’.

These are just a couple of the little quirks Jake has, he has many many more and they are difficult to understand.  They make perfect sense to him and they make him happy.  We work on the ones that need work, those quirks that will inhibit him from functioning fully at school or in social situations.  To be honest, out of all of the tasks we have worked on over the past two plus years I have to say these are the hardest.  I can justify fully why he needs to eat with a spoon versus his hands.  I can justify why drinking from a regular cup is better for a boy his age than a sippy cup.  But what is hard for me is trying to help him with the things I don’t understand, the ones I truly don’t get.  Jake is somewhere between 2 1/2 and 3 years old developmentally.  So he is at that age where he wants to be a big boy, he wants to do things for himself.  So that is what I tell him, big boys drink from a cup, big boys use their words and use nice words, big boys don’t stand in one place and jiggle their whole body making strange sounds, big boys don’t talk to their hands.  I don’t really say these things all of the time but they do work with him.  He wants to be a big boy, thankfully, so I have that on my side now.  It is just hard.  Maybe it isn’t hard for others, I see and talk to other moms with kids like Jake and they seem to have it together by now.  Maybe they don’t, they might even be thinking I seem to have it together and they don’t.  There are times I feel like I am just starting this journey.  There are times, I throw my hands up and just say “I DON’T KNOW AND I DON’T CARE”.  I think for me it is like being a mom for the first time.  There is no instruction manual, there are only suggestions for me but each child is different and you have to find what works best for your child.  What works best for Jake, or me,  depends on the day.  Each day is a mystery, I never ever know what to expect from him.  I don’t try to understand it all as much anymore, I just try to take it one day at a time…pray and hope for the best!

Joshua 1:9 “Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

Summer Fun
Summer Fun