4th Of July

I love the 4th of July.  It's that time of year when we enjoy cook-outs and fireworks with good family and friends.  The fun part of the summer when the children are running around with watermelon stained shirts, colored mouths from Popsicle's and sparklers in hand.  I love how the kids eyes fill up with wonder and amazement as fiery lights streak across the sky and explode into a beautiful shower of colors and sparkles.

For an Autistic child those eyes aren't always filled with wonder and amazement but often with fear and uncertainty.  The loud thunderous booms and bright flashing lights often scare children on the spectrum.  Often times I never know how my son will react to fireworks but usually he covers his ears and wants to go back inside,  fearful of the noise and bright lights.  No amount of reassuring will help him to enjoy the joyous thrill of watching fireworks.  
I hope this year it will be different for him but you never know how he's going to react until he's faced with the situation.  This year we are literally across the street from the two largest firework shows in the city.  If he's in bed or indoors he's usually okay and the noise isn't so scary for him.  I hope this year being in our own back yard will be comforting and that he may actually enjoy the show this year.   So many parents get to experience the joy of watching their children gaze in awe and amazement at the firework displays never thinking of what it's like for an Autistic child.
Now that our daughter is getting older we don't want her missing out on things so it usually means that one parent misses out while the other parent shares the activity with our daughter.  It's not our son's fault and I never want him to think that it is,  he cannot help his sensory issues.  I won't sit here and say that it doesn't make me sad that he can't always enjoy the things that other children do because it does make me sad and it hurts my heart to know that he is missing out on things.   
We will take him outside and if he thinks he can handle it then the four of us will lay on our hammock in the back yard and enjoy the fireworks.  If he can't handle it then it's okay too.  He and I will go inside and read a bed time story and turn up the TV so he doesn't have to hear the booms of the fireworks.   I hope this year he will be able to handle it and experience the joy in it all without being fearful.  Like every holiday we approach it with great caution and with lots of preparedness to make it as easy as possible for our son.

AS-SEA Beyond Tomorrow Fundraiser

 AS-SEA Beyond Tomorrow will be having a fund raiser to benefit their non-profit organization.
Tickets go on sale July 1st for $10 per person.  DiscOasis will be there performing so please come out and show your support for AS-SEA Beyond Tomorrow.  It's a wonderful organization doing wonderful things in our community to help those with Asperger Syndrome. 

Location: Flying Monkey Theater Arts Center Lowe Mill
Date: Saturday August 27th
Time: 6pm - 9pm
There will be a silent auction and the young people will be showcasing their art and musical talents starting at 6pm.  Come out have a great time and support a wonderful cause.

VCUG Results

When Sammy had his surgery in March we knew that it had an 80% success rate.  We were optimistic that the worst was behind him after he had the surgery and that this would fix his kidney reflux.  Today he had his VCUG procedure and it was so hard on him.  He fought with everything he had which made it even harder.  The radiologist told Joe and I that Sammy STILL had kidney reflux stage 2 borderline stage 3 the same as he had before his surgery.  We were devastated but at least it prepared us for when we went to see the urologist.  Usually the nurses call you back but the doctor came out and personally got us and we knew why.  He closed the door and said he was sorry but Sammy was in the 20% that the procedure did not work for.  At least being told before hand softened the blow a little.

Our question for him was, "what do we do now? Where do we go from here?".  Since Sammy had a catheter today he has to remain on his antibiotics for 3 days.  After that he is to stop taking them.  He has been on them since before his surgery so now we have to stop them and see how he does.
If he gets break through infections then it's on to a harder, more invasive surgery.  If he doesn't get any infections then he has another VCUG in a year to see if he is outgrowing it.  The look on the doctors face let us know that he didn't think this was something that Sammy would outgrow. 

I just cannot believe that after everything he has been through we are seemingly starting all over again.  Joe is taking it hard,  he is so angry and hurt for Sammy.  He even called to tell his parents about it which shocked the crap out of me (long story there).   I think I'm still in shock and in disbelief.  I never thought about the surgery NOT working.  The ultrasound he had in April looked really good and we figured that was a good sign.  I guess we were wrong to get our hopes up.   

Why is this happening to Sammy when he has already been through so much?  How much more does my little boy have to go through?   I want to scream and cry like a 3 year old that it's just not fair.  Just when things started looking up for him it's like somebody threw a brick wall in front of us.   I don't want Sammy to have to go through invasive surgery.  I don't want my son to be cut and have to spend time in the hospital.  I just want him to be okay and not have to go through this.  He's 5 years old and it seems like he's been through more than enough over the past several years.  When does it stop for him?  I'm sad, angry, hurt, and heartbroken and I just want to kick or hit something.   I would gladly trade places with him if it meant he wouldn't have to endure anymore procedures or surgeries.
I just don't know what else there is to say right now.

  This was Sammy after the medication kicked in.  He was feeling goooood.

Sammy after the procedure

VCUG Take 2

Sammy is going in a little bit for what is hopefully his last VCUG procedure.  I know how incredibly rough the last procedure was on him and I don't expect this one to be any different.  
This time Joe will be going back with him while he has it done.  I had a hard time holding him down last time and my heart broke.  I can't handle watching him struggle and begging for me to get him out of there.  Now that he knows what to expect maybe this time will be easier but I doubt it.  The doctor thinks that after looking at his ultrasound last month that the surgery worked but having this VCUG is the only way to know for sure.  If everything looks okay then we will be released from the kidney doctor and he will be off the kidney medication for good.
So think positive thoughts for us and keep your fingers crossed that the surgery worked and we get good news today.

Friendships

Watching children play together is always a precious thing.  The first several years of Sammy's life he had no desire to play with the other children or make friends.  He was quite content sitting on the sidelines and watching everyone else play.  Other children would initiate play with Sammy but he had no interest.  
It's sad to watch the other children laughing and playing on the playground while your child plays alone picking clovers out of a patch or finding pleasure in his solitude. 
Autistic children lack a lot of social ques and tend to avoid social interactions.

Now that Sammy is older he does play with other children if they are children he is familiar with.  He still likes to watch more than interact sometimes but he is learning to deal with some of the social, "quirks" he has.  I've mentioned several times in this blog about his best pal Donaven.  Donaven is a precious little boy who is also on the spectrum.  He and Sammy have been in preschool for 2 years together and developed a friendship.
Over the Memorial Day weekend we had a cookout and had some family and friends over to join us.  We had the pool and Slip n Slide set up and the sandboxes all ready to go.  We were so happy to have Donaven and his mother and brother join us in the holiday celebration.
Donaven's mother and I were chit chatting and we both have noticed over the past few months how odd the boys interaction with one another is.  Those two boys just adore each but they don't play together.  They do their own thing separately but they like to be near each other.  They like the companionship and comfort of knowing the other one is there even if they aren't really playing together.
I wont even begin to try and understand it but it works for them and it's very sweet.


Sometimes just watching them is fascinating.  They are so different in some ways but very much alike in others.  They don't sit down and do an activity together but they like having each other around.  Maybe it's a comfort thing because they have spent so much time at school together and then socially outside of school.  It makes me feel good knowing that Sammy has someone that he considers a friend.  
I had to break the news to him that he and Donaven would be going to different schools in the fall and it made him sad.  He told me that he loves Donaven and that's his best friend.  I think my heart broke as much as his did when I saw the tears welling up in his eyes.  I assured him that we would still see them socially and they would have playdates.  Not a day goes by that he doesn't mention Donaven.


When your child has been solitary and has social issues it really does your heart good to see them have a friend.  It's hard watching your child be a loner because they don't get certain social cues or because they find joy in their solitude.  As a parent it's a sad thing to sit back and watch.  You want your child to flourish socially and to interact with their peers.  Sammy has come a long way socially,  but he still has a long way to go.  We are working hard on his communication and how he responds to his peers.  Sometimes if he isn't in, "friend" mode and one of his peers talks to him he will completely ignore them or yell, "NO".  Sometimes the child on the receiving end doesn't understand and feelings get hurt.  He will on occasion do that to an adult and I have to sit him down and talk to him about his response and how to better handle it next time.  I'm sure he gets overwhelmed and doesn't know how to correctly express his feeling but in time he will get there.  We just have to keep encouraging him and continue giving him the guidance and reassurance that he needs.