Autism now and forever!

From the first time I heard your son has Autism until now it has been a learning process.  Somedays I struggle with the fact that my son has Asperger's Syndrome and that it has forever changed our lives.  This is usually when he is having difficult days (which has been everyday lately for about 5-6 weeks).  Tyler is who he is for a reason...he is MY SPECIAL BOY!  I wouldn't have it any other way. 

Since the day that we learned what Autism was and how it would affect our family I've been trying to learn and read everything I can to make his journey in life a much easier journey.  I wanted to write this blog to just say that I love him no matter what and that I am here for him. 

And of course thanks for the people (you know who you are :)) that guide me through this journey with their friendships and thoughtfulness!  

Gulf Shores, AL

Since we decided not to go on vacation anywhere last year I decided I wanted to go to the beach this year.  We usually vacation in the outer banks of NC but I wanted to go somewhere different this year...came up with Gulf Shores.  I've heard how pretty it is and that its a nice place to go.  I wasn't looking forward to the 12 hour drive but its vacation right!

First night there...they just had to go down to the beach :)

Snack time on the beach

Tyler and Cameron with mom

I enjoyed Gulf Shores, however it was super hot!  My friend Pamela did tell me ahead of time to be prepared to sweat and we did!  Shew...  Mom likes the outer banks better because its not so commercialized but with the boys getting older they are going to need more things to do instead of just sitting on the beach.  Troy on the other hand was done with the beach by Wednesday of the week we were there.  He's not much of a water person and then having sand in everything you own gets a little old.

Atlanta Aquarium

Since we got to enjoy a long weekend with it being Memorial Day we decided to drive down to the Atlanta Aquarium.  I wasn't looking forward to the drive since the boys don't do great sitting still for that long but they actually did really well on the way down...on the way back they just were okay.  I'll take it though since it was a preempting to our trip to Gulf Shores, AL in August which is about 6 hours longer!  Tyler loves sharks and loves the ocean life so we wanted to go down and see what they had to offer.  My friend told me that this was one of the best aquarium's she's been to..what did we have to loose.

We got to see the two whale sharks they have there, a sand tiger shark, nurse sharks.  Manta rays which just keep doing back flip after back flip.  The boys really liked them.  We also loved the penguins.  It was a nice trip and I would go again.  Here are some pictures to enjoy!

Bye Bye Kindergarten!

Hard to believe that my baby boy is no longer in Kindergarten. He will be a big first grader! Tyler has come a long way from the first day of Kindergarten. He still has days where he has meltdown after meltdown but then the next day he could be happy and full of energy. You never know what kind of mood he will be in. We just roll with the punches.

For his Kindergarten graduation they had Kindergarten Round Up where they sang cowboy songs and danced for us. Then he received a certificate for completing Kindergarten...watch out first grade. See you soon Ms. Smith!

Tyler in the red hat on the back row next to the girl

Seizures...Atypical migraines???

This is how he looked on Friday when I came home.

Last week Tyler had a really hard week. Monday he felt fine. Tuesday he threw up and was out of it and just not himself at all! Tuesday night he had a seizure while sleeping...I just happen to be sitting next to him and discovered this. Wednesday he was still out of it, he was very confused and disoriented. Thursday he was much better--he actually ate for Betty and played outside a little. Well Friday was a completely different story. I woke Tyler up around 6:45 that morning since I had to go to work. I dropped him off at Betty's at 7:30 and he was back out again at 8:00 until 11:00 (which if you know Tyler he does not nap at all!) Once he woke up Betty wanted him to eat something so she asked him if he wanted a biscuit with grape jelly. He said uh no that's for breakfast (silly boy) she proceeded to tell him that he could have that whenever he would like. She when into the kitchen to get the biscuit for him and when she came back into the living room he proceeded to tell her...I TOLD YOU I DIDN'T WANT THAT. My poor baby was so confused and disoriented. He was very emotional and just completely out of it. Seizure again Thursday night while sleeping is what we think is the culprit!

Troy picked him up around the time of the biscuit incident and took him home where he then fell asleep again around 1:30 to 3:30. When I came home from work he was laying on Troy outside with no energy at all. This is from Tyler that is normally like an energizer bunny! Saturday he was still pretty much the same...no energy at all.  This one really zapped him like never before.

After many talks with the neurologist team last week they are going to put Tyler into the hospital at Cincinnati Children's Hospital on April 22nd thru April 25th to watch him while doing a video EEG.  I'm hoping they can figure out why the sudden episodes.  Next Friday can't come soon enough.

Honoring Autism Awareness Month!

APRIL is Autism Awareness Month!!
Autism affects 1 in 10 children. We must come together and celebrate the wonders of Autism. OUR children are wonderful, each with their own strengths and talents. They will teach us but we need to be willing to listen! Currently there are no medical tests for autism; diagnosis is based on observed behavior and development. While it is generally diagnosed at a young age—for 51-91 percent of children, concerns were recorded before age 3—it’s a lifelong challenge for most.

Parents of those with Autism face everyday with what is going to happen today. Will we make it through today without meltdowns, anxiety, aggravation. Families are overwhelmed and under resourced! I know this from experience...we are exhausted! As a parent of a child with Autism we face challenges everyday. Will my child be viewed differently from others, will he be accepted, will he be made fun of?? Those are my fears...just to name a few. You know what my fears are but do we know their fears? I DON'T! He can't express himself in that way yet. But with Self-regulation techniques we can help him through his anxiety and feeling ungrounded. A weighted vest helps him, a chewy tube (which we know that Tyler really needs oral stimulation), swinging helps him, and sometimes just a nice hug helps, and OF COURSE A ROUTINE that they know. Tyler loves having a routine and sameness throughout the day!


(older picture of Tyler swinging...it really helps group his body)

UK Emergency!!

Sunday was a day filled with oh my goodness! Tyler started the day of great at my mother-in-laws, he got up and was dancing and playing with the other kids. Then on the way to church he falls asleep, they get to church he is still asleep. They bring him upstairs for church and my mother in law just thought he was going to sit at the end of the pew but he got up and kept going. He fell down a couple of times and just didn't know where he was at. A lady in church witnessed all of this and said he's having a seizure and ran over to help. (I really wish that me or Troy were there but we weren't!) Troy is actually in the parking lot waiting to get him when Tyler starts to dry heave everywhere. He gets home with him and his pupils are the size of the color of your eyes. It was horrible! He continues to seize and dry heave...no relief in sight. I decided to take him to the emergency room where they managed to stop them and stop the dry heaving. Tyler has never gotten sick with his seizures before so this was new to all of us. He had gotten sick so much that he was already dehydrating from just that morning.

Once he came around, which was around 4:30 we left the hospital and was home by 5:30. He was still pretty much out of it and just tired from them. This was the worse that I have ever seen Tyler. It was very scary for me to see let alone let him feel that way. We are in talks with the neuro about trying Depakote. I'm hoping we can get relief soon!!