The Reason I Jump....book review

The first time I saw this book come across the screen on one of the facebook autism sites that I follow, I knew that I needed to get a copy.  I put it on my Christmas list and it magically appeared under the Christmas tree and I opened it up on Christmas morning.

I got around to picking it up yesterday afternoon.  It only takes two hours, give or take, to read it from cover to cover.  I didn't want to finish it all in one sitting, so I put it down and finished it this morning. When I started reading, I confess that it wasn't what I was expecting or wanted it to be.

I had this same disappointment when I started reading another book written by a person with autism, Carly Fleischmann's book Carly's Voice.  Carly's book was actually written by her father with only the last chapter being actually written by Carly.  HOWEVER, yes it's a big however, I learned more about autism in that one chapter written by a nonverbal person with severe autism than from the other hundreds of books and articles that I had read on the topic.  If you haven't read this one either, please get a copy and read what she has to say, it's totally worth your time and money.

I just LOVE this girl.  I follow her on facebook and have such maternal pride for her as she started her first year of college this year and is campaigning to be a Cover Girl model in an ad campaign featuring special needs girls to show that they are beautiful, model worthy girls too!!!

OK, back to The Reason I Jump.....in this book Naoki Higashida answers questions pertaining to autism that people have asked him.  Not sure really what I wanted from this 13 year old non-verbal boy, but a Q & A wasn't it when I started reading.  But of course, he got to me.  I needed to take a break from reading because I didn't want the information that I was getting from him about my own child to end.

The thing about this book, it is how HE answers these questions, and I have definitely have learned over the years that no two people with autism, just like no two other people, are the same.  However, he and Carly have pretty much the same message...even though they can't speak, they hear us, they understand a lot, and they want to learn.

Yesterday was a harder day for Bobby.  The Christmas excitement and activities are over.  It was raining and cold outside and he was bored.  He kept saying "go play" OVER AND OVER ALL DAY LONG (which means go outside and play)...you know, to the point that you want to pull your hair out.  The day before was warmer and sunny so Bobby got to play outside for a couple of hours.  Daddy finally gave in, bundled Bobby up and took him play in the cold, foggy, wet, damp, yucky to the rest of us outside.  Bobby came back inside completely calm and happy and the rest of the evening was MUCH better.

After Bobby came back in from playing I continued reading some of my new book.  I got to question 45, "Why do you enjoy going out for walks so much?"  In his answer he states, "But to us people with special needs, nature is as important as our own lives.  The reason is that when we look at nature, we receive a sort of permission to be alive in this world, and our entire bodies get recharged.  However often we're ignored and pushed away by other people, nature will always give us a good big hug, here inside our hearts."  Now, those who know Bobby and have been following Bobby's World for a while, know that this is 100% true for Mr. Bobby.  To have someone else in his similar situation put it into words....priceless to this Mommy!!

He even goes on to address this further in question 47, "Would you give us an example of something people with autism really enjoy?"  Towards the end of his answer, he states, "Nature calms me down when I'm furious, and laughs with me when I'm happy.  You might think that it's not possible that nature could be a friend, not really.  But human beings are part of the animal kingdom too, and perhaps us people with autism still have some leftover awareness of this, buried somewhere deep down.  I'll always cherish the part of me that thinks of nature as a friend."

4 year old Bobby hanging out with friends!!

This book is not all about nature, these two questions just absolutely related to the moment.  Let me give you another example of how he answers a completely different topic with an answer that I never expected.  Question 56, "Do you need visual schedules?"  In his answer he says ".....please don't use visual things like pictures on our schedules, because then the activities on the schedules, and their times and timings, get imprinted too vividly onto our memories.  And when that happens, we end up stressing ourselves over whether what we are doing now is or isn't matching up with what was on the schedule.  In my case, I end up checking the time so often that I'm no longer able to enjoy what I am doing."  He ends the full answer by saying, "...being shown photos of places we're going to visit on an upcoming school trip, for example, can spoil our fun."  

The depth of insight and thought that a nonverbal boy is able to convey through his writing is mind blowing.  What is going on inside my own child's head?  This book is one of those things that you come across that makes you think differently about how you respond to and act in front of your child with autism.  

Naoki didn't give me all of the answers that I wanted.  Not sure why I thought that a 13 year old boy could!  I just had to step back and take his answers for what they are....his answers.  After all, I can't explain to you why I like bananas and my brother doesn't or why he likes eggs and I don't.  We could go into textures and smells and blah blah blah, but the answer for me is it just the way it is. Understanding why the brain makes this true doesn't change the way that it is.  I will NEVER like eggs, plain and simple.  My brother will NEVER like bananas, plain and simple.  

His insights in the last question, #58 "What are your thought on autism itself?"  Within his response he says, "....as a result of all the killings in the world and the selfish planet-wrecking that humanity has committed, a deep sense of crisis exists........Although people with autism look like other people physically......We are more like travelers from the distant, distant past.  And if, but our being here, we could help the people of the world remember what truly matters for the Earth, that would give us a quiet pleasure."

I am trying to learn these lessons from Bobby.  Bobby doesn't hate or judge people, he doesn't make fun of or talk about people, he doesn't look at the color of someone's skin or their sexual orientation, he doesn't care about how much money a person makes or what job they have, celebrity means nothing to Bobby.  The celebrity rock stars in Bobby's World are the people who take time to help him learn, now matter how long it takes.  They are the people who treat him with kindness and respect.  Take Bobby for a walk or jump on the trampoline with him and you are all kinds of special in his eyes.

If you want a glimpse into the mind of a person with autism, check out The Reason I Jump or Carly's Voice even better yet, read both!!   You are not going to get all of the answers, but you will have better insight.

Autism Birthday Parties Aplenty

When your child is on the more severe end of the autism spectrum, social engagement invitations are not overflowing in your mailbox.  Which, quite frankly, is just fine with me.  When he was in Pre-K we got many of the obligatory invitations in which they must invite every child in their class to a party if they invite anyone.  Me chasing after him and trying to get him to interact in any birthday party activities that he could have cared less about while strangers are watching and he is just getting more overwhelmed with the loudness of the amount of children running around...well just sounds like a super fun time for all involved!!

However, we have a great group of families that we met starting four or five years ago through our support group that have become great friends.  Getting invitations to their kids birthday parties are like a big score....autism friendly birthday parties ROCK, at least for Bobby and his peers!!

Somehow, Bobby ended up with invitations to birthday parties for the past four weeks in a row.  I know, he is turning into quite the social butterfly.  Even though they are autism friendly parties, there are still some struggles that are unique to each special needs child that attends.

Our first birthday party of the month was not for a child with autism, but for the younger sibling of a child with autism who has had all these "quirky" children hanging around him all of his life.  He is used to them, like it or not.  When his mother invited Bobby to his party, I decided that we would only come to the second half of the party.  To another autism mom, this is totally normal and OK, no explanation needed.

Why wasn't I taking him to the entire party?  He had been to this particular facility numerous times and I was 100% sure that Bobby would be throwing a fit until he got to the swimming pool since he knew that it was there.  He would not have played nicely in the gym area and could care less about basketball.  He also doesn't care to sit and watch someone open their presents and eat cake.  Nope, all he would want would be SWIMMING!!!!

I was right, as soon as I pulled into the parking lot he started, "in the pool...in the pool...in the pool." He got out of the car and walked nicely with me to the building and he was stripping his shirt off the closer that we got so that he could be ready as soon as we opened the door.

The aspect of this birthday party that was the easiest.....buying a present for the birthday boy.  After all, this was for a typical child who likes to play with toys.  This was a breeze.  A new soccer ball, nerf ball, frisbee and I know that he will use them and wear them out.  Bobby played happily, by himself, in the pool while there were other kids running around from the pool to the hot tub to the pool mostly playing together.  Bobby had a GREAT time!!!

The following week's birthday party was for a girl who is also on the autism spectrum.  Historically, she has not wanted to open any presents or participate in a typical birthday party, very similar to Bobby.  Her mom decided to have a small party at a local park that is on her, as well as Bobby's, list of acceptable places to play.  The party was scheduled for right after school because there would be the best chance that the park would be empty while most people are getting home from school and having dinner before getting out for the evening to play.  One of the other invited guests ended up being sick, so the party list ended up being Bobby and the birthday girl, which was PERFECT for both children involved.

As moms in this specific situation, we often wonder what to do...celebrate or not celebrate?!  Is it for the kids or for the moms?  But, I'm pretty sure that you could ask this question over many other kids birthday parties today.  However, this case isn't the same thing.  This isn't a mom trying to out do another mom, this is just a mom trying to make her child's birthday special.  This definitely was not in the mommy handbook that we read while we were pregnant...what to do if your special needs child does not want to celebrate anything.  We instead have to look to our fellow special needs families and our children's behavioral therapists.  Yes, we sometimes even have to add "opening a present" to their behavioral programs....yes, we have to teach some of our children how to open a present.  If we don't bother with these things when they are young, they may never get it.  So we soldier on and try to plan a zero stress party for our children and hope beyond all hope that it is at least a little successful and that we don't end up going home after the party and cry our eyes out because our child hated every second of the party that was planned in their honor.

I am so pleased to announce that the party was a huge success!!!  The birthday girl and Bobby both had fun!!  No tears shed, no fits thrown....just a small intimate party for the two of them and a third guest that included a little boy that was almost 3, who came to play at the park, that had a super fun time.

As for a gift for the birthday girl, books were the obvious option.  She picks out a book from her collection every day and carries that one book around with her all day long.  I picked out a few that I thought that she might like and put them into a gift bag so that she could look in and not have to unwrap anything.  Her mom told me later that I scored with the Baby Einstein Halloween book that I picked out.  Even better news, she opened wrapped gifts on her actual birthday without any fits!! Whoo Hoo!!

The birthday party for the following week was for one of our support group kids that has Fragile X Syndrome, which is on the autism spectrum.  Bobby really enjoyed his birthday party last year because it was at a gymnastics center and they got to jump on trampolines for two hours.  This year the party was at an outdoor retreat area.  The scheduled activities included a bonfire to make s'mores, a hayride, pumpkin painting, playground area and food.  I wasn't sure how well Bobby would do at the party, but I knew that he would love the hour long ride to get to the party.  The fact that the trees were in full color was just an added bonus for the drive.

When I parked the car he could hardly wait for me to open the door.  There was a pond and Bobby was in heaven.  He went right over and parked himself in the grass with Mommy right beside him.

He kept sliding down closer and closer to the water and trying to get in and I would have to verbally prompt him back to sit beside me.  We did this for almost an hour.  One of my autism mom friends came over and sat with us to talk.  Bobby never went over to the birthday boy to say "Happy Birthday" or "thanks for inviting me" or any of those social requirements and the birthday boy didn't expect them or come over and say "thanks for coming to my party" or any of those social requirements.  This is what I really love about taking Bobby to autism kid birthday parties, social norms are pretty much thrown out the door....how much they are thrown out depends on the functioning level of the child and how much the parents are using the time as a teaching lesson.  Kids that are higher functioning will be working on these behaviors much more.

Then the parents announced that the hay ride would be starting soon.  I didn't know whether or not Bobby would like the hay ride or if I was going to try and then I realized that this was the perfect place to try.  If I needed to stop the hay ride to get him off, everyone there would completely understand.  I asked him if he wanted to go on a hay ride and I got zero response.  Then I changed my approach to something that he knew, "Do you want to go mow grass?"  He jumped right up and walked over to the tractor.  He was about ready to climb on the tractor drivers' lap, so I redirected him to the back.  The result....he LOVED the hay ride.  We stayed on and took the second trip too. Each hay ride was fairly long, 15-20 minutes long and Bobby was calm and happy for both rides.

This party was perfect for Bobby, and the birthday boy, a couple of hours spent enjoying nature. They didn't have to join in games.  There were activities set up if they wanted to participate or even if you wanted to take it home to complete.  But there is was no pressure put on the kids to do anything unless they wanted to.  It was so much fun to watch Bobby be so happy at a brand new place.

I knew that he would enjoy the final birthday party of the month.  Why?  This party is an annual tradition.  The birthday boy likes the same party every year....a swimming party.  Every October for the past 4 or 5 years, we have been going to a swimming birthday party for one of the boys that we met through our support group.

One great thing about this being the same each year, the kids know exactly what to expect...swimming, just swimming.  No games, no prizes, no food or drinks....just swimming.  Get in and have fun kids!!!  This was also an exciting year, because NONE of the parents from our support group had to get into the water with the kids.  They are all full fledged swimmers!!!  Yay kids!!

One particular reason that there is no cake at this child's party....he can't stand to hear the song "Happy Birthday."  For some unknown reason, the song upsets him tremendously and it takes him quite a while to get himself calmed down.  A super fun problem when you go to a restaurant because you just NEVER know when they are going to bring out a cake and start singing to a guest.  It is also fun to explain this to someone who just does not understand autism.

To all of my autism friends that invited Bobby to their child's birthday parties....Thank You!!  I can honestly say, he had a GREAT time!!!!

Spring Break is Winding Down/Happy Easter

Finally, finally, finally...we can go outside and play.  The snow and sickness are history and Bobby's spring break favorite, playing OUTSIDE can commence!!

For some reason, Bobby wants his hood on at all times.  He must have been getting a little warm because he decided to take it off (without unzipping just a little).  Of course I had my camera with me...what else do I have to do while sitting outside watching Bobby play for hours.

This whole process cracked me up a little too much!!  It was slow, slow process.

He was stuck like this for a few seconds, couldn't get it up or down.  Yes, I'm still giggling.  I know, I need a hobby!!

Success!!!!

Time to play in the dry leaves.  Wait a minute....is it time for the hood to go back on already???

What a hard worker.  If only you had witnessed this hood struggle first hand!!

 He got the nose in....

Yay!!  The hood is back on.

Oh the drama!!

 Yes!!  The leaves aren't getting down my back anymore!!

Silly boy...Woof!

The sun actually came out and the jacket came off...

 Bobby found a new dirt pile. 
This boy is a dirt magnet....

Time to go in a have a snack.  Bobby decided to have some yogurt.  He is still having spoon issues, but figured out that it is just easier to use if you turn it upside down...

The Easter bunny came....The Easter bunny came!!!!   Yay!!

First Bobby sat down and had his breakfast, then he ventured over to see what was in the basket.

 What do I see??  Lay's potato chips?????  What else is in here...

 Corn chips too???!!!!

 Wow, the Easter bunny knows the way to my heart!

 Bobby's favorite fidget.  Thanks Mom for taking the bow off, now I can see everything!

Oh my goodness...a pinwheel, this is awesome!!!

Now time to unwrap my present...

Something for Daddy to put together...

Back to the basket, more fun stuff to see...

Sorry Bobby, but bubbles are for outside.

The Easter bunny didn't forget Zoi.  Her favorite treat!

Bobby got right to work putting together his puzzle while Zoi was apparently uninterested.   Mommy got to work fixing Easter dinner so that we could eat before Grandma Carolyn had to go to work.

Grandma Carolyn arrived with some candy and a new hat for Bobby.  The table is set, but where's the food???

Bobby can't wait any longer.  He only cares that his french fries are ready...

I'm gonna sit down and eat, the others will eventually join me...

 And they did...eventually join him.   Aunt Dianna, Mimi, Grandma Carolyn, Bob, Bobby and I finally all sat down and had a wonderful Easter dinner.

Ahhhhhh....spring break is ALMOST over!!  9 days down and only 1 to go!!!!!!!

A Snowy Day 3 of Spring Break

We woke up to 4 1/2 inches of snow on day 3 of spring break.  Daddy had to get up earlier for work and plow our road since he took the winter tires off of our cars last weekend.  I guess that there is a small bonus to getting a snow day during spring break...we won't have to make up this school day.

Daddy's snow removal was helped out by the 34 degree temps and our hill was completely clear by the afternoon so Bobby didn't have to miss his behavioral therapy appointment...which by the way, he totally nailed!!  So for a reward I took him to Chick fil A for some waffle fries.

After we got home I brought Bobby inside and bundled him up to go outside and play in the snow.  When we went out it was clearing up and no more snow was falling...

He wasn't outside long before it started snowing again.  Bobby decided to go up into his playground fort to seek some shelter while I stayed in the dry comfort of our garage and used my zoom lens to get some close up shots....

In the short amount of time it took him to climb the stairs and get into the fort, it turned from snowy to blizzard like!!  He stayed in the fort for a while, but eventually had to come down and face the heavy snowfall...

The sliding board must have had too much snow on it to come down that way because Bobby walked around to the other side of the play unit and cleaned the slide off.  He didn't however, go back up and come down the slide.

 Poor birdie....

He didn't stay out long once the heavy snow started since it was sooooo wet.  He is taking his glove off in this last pic with his mouth even though it looks like he is sharing his feelings about all of this wet, heavy snow.

Ohhhh, what a super fun spring break this has become (cough, cough).  Day 4 started off at 2 am with a high fever (that didn't last too long) and vomiting.  Whoot Whoot!! Just thankful that our power remained on throughout all of this snow since so many in the area were not so fortunate.