Christmas 2011

Christmas this year was exhausting.  Friday night we had Christmas with Troy's parents, Saturday night we had Christmas with my mom and my sister, then of course Santa came on Sunday.  Shew...exhausting.



Exhaustion set in





Shooting at you of course :-)



Sweet face

Rough times

Over the past month it has been one of the most difficult times we have been through.  Tyler is having such a difficult time and we can't put a finger as to why.  He's screaming, crying, yelling you name it he's doing it.  I feel like running and hiding from it all, but I can't.  I have spent many nights just crying and trying to tell myself that I am here for him!  I am the one that will help guide him through life and make him feel like he can do anything that he wants to do!  It's hard but I have to keep telling myself this.  Not only is he doing all of these things he is also sleeping a lot.  Sometimes 2-3 hour naps during the day and he NEVER used to take naps before unless he was sick.  Well on Friday we went to our scheduled appointment with the neurologist and he is thinking that Tyler is having intermittent seizures everyday and weighing on him physically and emotionally.  They have decided to put him on Clonazepam and have referred him to a neuropsych to see how his brain is truly functioning.  Along with being epileptic, having Tourette's, anxiety, and Asperger's syndrome they want to see how he will react under certain situations.  The testing is 6-12 hours!!  It could be an all day thing or a two day thing.  We will be doing the testing at Cincinnati Children's Hospital.  Please pray for him during this difficult time and for us to stay strong and be there for him.

Hmmmm....life!

There has been a lot of things going on lately and I haven't blogged.  Maybe because I really don't know what to talk about or that I don't want to complain about what I go through day in and day out.  My days are full of work, trying to do what's right for my kids, working on my relationship to make it strong as can be, being a good role model....you name it I try to do it and keep the balance.  Here lately I feel as if I'm constantly trying to stay afloat.  I have to stay on the school to make sure they do what they should do for Tyler and all of his needs.  I have to be the peacemaker between Cameron and Tyler since they love to fight and pick at each other.  Having therapy every Wednesday night for Tyler for two hours is mentally exhausting...but I do what I need to do to make everyone in the house calm and together.  Trying to keep it together on the weeks that Troy has been having to go and work out of town...shew it's hard to do it all.  Here lately I find myself crying myself to sleep wondering why!  Why is life so hard for Tyler?  Why Cameron has been cheated on a childhood that should be full of fun and laughter...we have some days but most of the time it's spent working with Tyler.  Friends are gone since it's too hard to deal with our life with an autistic child.  It is hard...try to be in my shoes for 1 day.

Sorry this blog has been a lot of complaining....I just needed to get some of it out.

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!!

DIAMONDBACKS!

Tyler has decided that he wants to play T-ball this season. We are going to give it a go and see what happens. I really hope that being with other kids will do him well. He just really has a hard time with other kids and being able to fit in without upsetting him. We tried T-ball before when he was 3 going on 4 and it was so traumatic for him. His first practice is tonight and I'm hoping he takes it in stride and goes with it. We have planned this and told him that he has practice today hoping that if he knows what is going to happen he will be a little more at ease.

Go DIAMONDBACKS!

Diagnosis

Tyler has an updated diagnosis per say...he was diagnosed with PDD-NOS originally but now that he is 5 and has had an IQ test his diagnosis changed to Asperger's Syndrome. His IQ came in at 110! The school psychologist even stated it could have been even higher but he became distracted at the end of the testing. I have such a SMART boy!

What is Asperger's Syndrome you say?
Asperger syndrome (AS) is a neurobiological disorder that is part of a group of conditions called autism spectrum disorders. The term "autism spectrum" refers to a range of developmental disabilities that includes autism as well as other disorders with similar characteristics.

We have good days with Tyler and we also have bad days. Some days it seems like an uphill battle that can never be climbed. Other days he's just a sweet little boy viewing the world differently. He has gotten better about going to doctors, seeing different people (which some days is still very difficult for him), watching kids play. We just try and take things one day at a time!


One of my favorite pictures

So PROUD!

Cameron is doing well with his speech in school. He is working on the ch sounds and v sounds which are difficult for him. His v sounds more like B's but he is getting there. I am so proud of where he has came from to now!

Tyler is making strides in reading and math at school. He is reading on level which at the beginning of school he was a little behind. Phonics is hard for him to grasp along with rhyming words. Math was the same way he was a little behind at the beginning of school at 131 now he is at 161. WOW what a jump in just a few months. I am so proud of both of them.

Ma'am are they twins?

People stop and ask me all of the time...are they twins? Answer of course is NO. Tyler is 5 and Cameron is 3 however they do look so much alike! Eventhough they look so much alike they are so different! Tyler is very high strung and always on the go, Cameron is much more laid back and will just chill (as Troy calls it). Cameron when by himself is an angel. Calm and will play by himself, but when Tyler enters the picture Cameron becomes whinny and an overall bear at times.

Here are some older pictures of the boys and you tell me who is who!