A Typical Summer's Day in Bobby's World

Ahhhhhh, summertime.....the time of year that most children look forward to all school year long. They finally get a break.  However, for some kids with special needs, it can be the dreaded time of year. Their beloved routine is out the door and it causes their behavior to not be it's best.  Luckily for Bobby, the older he gets, the easier it is getting.  But you can just tell that he is bored.  Thankfully the special needs parents and teachers who have traveled this path before us did something to help this problem in the special needs community......ESY.

Oh ESY, how we love you!!  Extended School Year, designed to help special needs kids keep their school routine and not regress the skills that they learned over the school year.  Bobby, and many of his peers, have been going to school year round since they started school at age 3.  You think that he would be crying and not wanting to go back to school.  Every year, he and his peers shock me with the fact that they can't wait to go to summer school!!  We all have stories of the kids wearing their backpacks and waiting for the school bus way before it is time to leave for school.

For Bobby, it starts at least an hour before it is time to go to school.  "School bus.....school bus...." is what I hear all morning long.  He will stand at the back door with his backpack on for half of the morning just waiting to get out the door.  Yes, you can see us parked at the bus stop most mornings 10-15 minutes early just because he can't stand it anymore.  YES Bobby, you are going to ride the school bus!!!

Come on Mom!!!  Enough with the pictures......let's GO!!!

Bobby really lucked out this summer, he gets to ride the bus for over an hour before school.

Bobby goes to summer school Monday through Thursday from 9:00 am until noon, where he works on the critical skills that are listed on his IEP.  He also receives speech therapy services while he's there.  They also have a lot of fun during ESY.  

I pick up Bobby from school 15 minutes early every day so that he can go straight to his ABA therapist without having to wait around until the 1:00 appointment.  I like to take him to the noon appointment so that we can just get it done while we are already out and go home and have the rest of the day to have fun.  I wanted Bobby to sit down yesterday when I went in to school to pick him up so that I could take his picture.  His hands went right back into the shaving cream, he didn't care that he was already cleaned up!!!

His buddy Sonny looked at me and said "I LOVE SHAVING CREAM!!"

Bobby had a little fun with his teacher, Miss Debbie, who by the way will be his autism teacher when he heads off to middle school in a couple of years.  The fact that they already know each other makes me so happy for that transition time.....2 more years to go!!

Our friend Sonny took this opportunity to go over to his favorite place......the computer area!

Bobby and I headed out to the next stop....ABA therapy!

 Waiting to see what letter he is supposed to write.

Nailed it!!!

Then we go home and I try to find fun things for him to do in the afternoon since he has already worked for 4 hours.  Yesterday we went to Stepping Stones where he had his first swim class in their new outdoor pool.  He loved the new pool and was asking for it again last night!!  

Bobby's Perfect Day!!!!

There is a little secret in the autism community.  If and when your functionally non-verbal child starts talking, you have a new problem.  They won't be quiet!!  It's extremely hard to be upset with them because you are just so unbelievable excited that they are talking and talking correctly.  The number of hours of therapy, prompting, praying, crying, celebrating to get to the moment that they start talking is just.....well, I don't even have the right word to express the pride and euphoria that you feel when they finally start taking.

But now, all we hear all day long from Bobby is the places that he wants to go.  Funny enough, when you get there he is already talking about the next place that he wants to go.  For instance, Tuesday when he was swimming at Krepps Pool he was saying "Grandma house."  He says these things repeatedly, I mean every 2 seconds until you just can't take it any longer.  Now, we have to work in therapy on how to get him to stop talking.  Now I know everywhere he would like to go at all times and while I was washing dishes I started thinking about his perfect day of going to all of the places that he asks for all day long.  (Boy, oh boy, I can't wait until school starts for a little break!!).

Bobby's perfect day....

He would wake up at 7:00 and I would let him have potato chips with ranch dip for breakfast and we would definitely skip brushing teeth.  We would get dressed and drive to Grandma's house where he could run upstairs and turn on an Elmo's World DVD on the tv, then he would come downstairs to the living room and look for her computer so that he could watch YouTube (he doesn't know that our computer has this option!!).  He then would watch Moose A. Moose (of Nick Jr. fame) sing "I don't like candy corn" his song of choice.

After we stay at Grandma's for about an hour, it will be time to leave.  As we are driving up the interstate to come home, we would obviously stop off at Valley Worlds of Fun!! 

After all of this fun, we will get back on the interstate and head north.  Instead of staying on 79 to go home, we will turn on to 68 and head to Sabraton.  First stop, Long John Silver's for some lunch and then head on over to Marilla Pool to play on the water slides.

After Marilla, we would go back to the interstate and stop off on the University Ave. exit and go to the WV Gymnastics Training Center for some tumbling, after all we are driving right by so why not!!

After tumbling, back to the interstate and back onto 79.  Next stop Westover Exit where we would stop at McDonald's for "french fries, chicken...no sauce" followed by a stop at Playworks Child Development Center and look for Santa Clause in the playroom.  I'm gonna bet that he don't find him!!  Next stop, "Sheldee's house," aka, Shelly's (Sonny's) house where he wants to run around their front yard.  

Back to the interstate and this time the Star City Exit and a stop off at Krepps Pool for "swimming...towel....Coach."  We have to see Coach, who is Bobby's phys. ed. teacher at school.

After we are done at Krepps, we would take Bobby to the University Town Center and let him walk around Barnes and Noble, where he would pick out another Elmo's World DVD to add to his collection.

He prefers to pay for his DVD at the Starbuck's counter so that he can also get a super duper large sugar cookie with sprinkles.  Next stop Target so that he can walk around the store and make sure that all of the freezer door handles are all still lined up properly.

After Target we would finally head home.....and during the ride Bobby would say "Grandma house" the entire ride home.  We just can't win this one!!!!  Yes, we are still incredibly beyond grateful that he is learning to talk.  Since it is a theoretical perfect day, when we made it to our driveway, there would be kids lined up who wanted to jump in the trampoline with Bobby!!  Score!!!

A Picture Says It All

This weekend we had a big 10th birthday celebration at Marilla Pool and Water Slides for Bobby and two of his autism friends.  The weather was perfect, the kids had a great time......the party was a huge success!!

When I came home and downloaded all of the pictures that I took, there is one that really stood out to me....

The more that I think about this picture, the more that it says to me.  When I first saw the picture, I thought that all five of the boys in the picture have autism, but as I looked through all of the pictures a couple of more time, I realized that there is one NT (for those of you not up on autism lingo, NT means neurotypical...doesn't have autism!!) kid in the picture, which kind of even makes it better.

I met the other autism moms that hosted this birthday party with me when our kids were in pre-K. We were pretty new to autism and all felt alone and scared.  I started a support group and now, this many years later, these other moms have become my very good friends.  The guest list basically consisted of the kids that we met in the support group many years ago as well as some of the boy's classmates and a few others.

When I first met the support group moms, we shared information on doctors that we had seen, therapies and therapists that we had tried, diets, strategies, books......all that we talked about was autism, which was the absolute center of our universes.

Now, we are celebrating these boys turning 10 years old.  All of the kids on our autism guest list have also grown older.  Something happened along the way that we couldn't have even imagined when we were all sitting around the table in our support group meetings 6 years ago.  Our kids matured and learned.  Maybe even more importantly, we have relaxed as autism parents.  We have conversations that don't revolve around autism!!  Imagine that!!

If this picture had been taken when we met, the boys would have all been holding on to their mother's (or father's) hand as they walked up to the top of the water slides.  Or maybe even a mom would be dragging them up to the water slide to get them to try because we knew that they would love it but their anxiety to try was just too great.  There would have been someone ready to scoop them up at the bottom of the slide.  We wouldn't have really relaxed during the party because we would have had to been right by their side at all times.

Our kids are at all different levels of the autism spectrum with different levels of issues.  Some are good talkers, some non-verbal, some in regular ed., some in complete special ed., both most are somewhere in the middle and some are home schooled.  There is a saying in the autism world...."if you've met one person with autism, you've met one person with autism."  These kids are as different and unique as each individual person on this earth.

What I do know from being on our autism journey for 8 years now, I will never underestimate these kids again!!  They have all learned and are absolutely educable.  The older we all get, the better we are at learning the signs when our children are overstressed and ready to melt down.  We have learned how to prevent this much better and how to handle to situation when it happens.  We also know that sometimes it is just going to happen and you may have to let them get through it on their own.  One wish that I do have, that will obviously not be able to happen......I wish that I could have raised Bobby with the knowledge that I have now about him and his issues.  However, don't we all want to be able to go back and redo some of the things that we have done in our lives with the knowledge that we have now.

Now, back to the picture......
These boys are walking independently up to the the top of the water slides, where an autism parent was waiting along with a life guard, they aren't ready to be completely independent on this journey.  The waited for the most part very well for their turn and generally only needed some verbal prompting for them to wait their turn.  We had an issue or two with waiting, but nowhere where the issues would have been a couple of years ago.  When they got to the bottom of the slide, they got out of the water with some verbal prompting and off they went up the stairs again to get another turn.

This picture could have been of any five boys at all!!  This picture is of five boys who are just excited to go down the water slide, just as any other five boys would be.

When we reflect back when they turn 16, 18, 21.....how much more will they have progressed?  What exciting things will they learn?  What accomplishments will they have?  Who knows!!  Who knows about any individual. What I do know is that they be further along than we dared to dream when they were diagnosed.

Happy 10th birthday Bobby.  Happy 10th birthday Andrew.  Happy 10th birthday Sonny.
We are so proud of you and all of your accomplishments and we can't wait to see how far you go!!!

School's Out For The Summer, Third Grade Edition

Wednesday was the last day of school!! Whoo Hoo!!  Bobby gets two whole weeks off of school before summer school starts.  For kids with special needs there is a program called ESY (Extended School Year) which Bobby has participated in all of his school career.  Even though school is out for the rest of the kids, he hasn't really finished up with third grade quite yet, 6 more weeks to go. However, we consider this the end of his school year......so Bye-Bye third grade, thank you for being the best school year to date!!!!!

There were quite a few activities arranged to let the kids have some fun during the last couple of weeks of school.  Bobby participated much more this year than ever in the past.  I don't go and volunteer for these activities because as soon as Bobby sees me he thinks that it is time to go and his participation is down the drain, but thankfully his aide Miss Deb takes pictures and sends them to me!!

The Kona Hawaiian Shaved Ice truck came to school and the kids all got to go outside and line up to get a treat.  Bobby ate almost half of his cup full with some help from Miss Deb.

Field day had to be moved inside the school this year because of the threat of horrible weather.  Yes, probably not a great idea to take the kids out to the football field when there are tornado threats.  No pictures but Bobby did participate in a few of the activities, but as soon as I got to school to pick him up for therapy, he took me by the hand to leave......that's why I don't volunteer to help out.

The ice cream truck also made a visit to the school.  I have no idea why Bobby doesn't like ice cream. He likes milk and loves ice and cold drinks, but ice cream just doesn't seem to be his thing, but the pictures make for a good laugh.

 On this day when I went to pick him up, they were in the gym where a DJ was playing some tunes and the kids were all dancing.  Reportedly Bobby had been smiling and dancing and as soon as he saw me his face went somber!!  Crazy mom came and ruined all of the fun!!

Dancing away with Ms. Kim.

Finally, we made it to the last day on Wednesday.  When I arrived at the school to pick up Bobby, the aides were out on the small playground with some of the kids while Ms. Kim was finishing up some grading.  I was so excited that Bobby was out there because I had been wanting to take a picture of him by that particular fence to see how much he has grown versus a picture I had taken of him on his first day of school ever at age 3.

Wow, I just can't believe how much he has changed in the past 7 years!!!!  

I didn't manage to get a very good picture of Bobby with his beloved Ms. Kim, but here's the best one...

I just couldn't be more proud of all that he accomplished this school year!!!  Best school year yet!