Field Trip

Today I (Mike) had the pleasure to go with Brycen on his first field trip to the zoo.  I was assigned to lead Brycen and his new friend. Unfortunately his friend didn't come to school today so it was all on me. His friend had helped Brycen get over the hurdle of getting on the bus last week. Needless to say I was worried that without his friend, getting on the bus could become a problem. All the kids lined up,we were in the middle of the line, Brycen holding my hand, and the bus door was open. Off in the distance I could see Melissa sitting in her car watching to see if Brycen would get on the bus. I decided not to point her out to Brycen in fear that that might set him off, infact I said nothing, and then up the stairs we went!

Brycen chose the window seat, at that time I pointed Mommy out to him so he could wave at her and blow her kisses. Brycen looked out the window the whole way to the zoo just like he was riding in the car. I think Brycen loves riding the bus now!!! During the ride I explained to him periodically that we were going to the zoo to look at animals, infact he even imitated the word zoo by giving me a "ooo" sound.

I was assigned to be with Brycen and his friend, but since he didn't come we then joined another group. In that group a boy said he wanted to be Brycen's partner for the day, and off we went.
All the kids had a great time looking at animals but I know Brycen's favorite part was riding the train! We didn't do the train at first, we walked right by to go look at some monkeys, and Brycen had no problem with that! He would keep looking back at the train, and I would remind him that after we look at some animals we can ride the train.

When we were waiting for the train Brycen was getting a little anxious but when he heard that train whistle, his smile, and his excitement was priceless. He then had a little snack and juice during his train ride. He was willing to get off the train and continue to go look at some more animals.

At lunch time we all got back on the bus (with no problem) to drive to a park, to eat, and play! When we got to the park, lunch was first, and Brycen sat with about 6 of his classmates. His classmates would say things like "Brycen is sitting by his Daddy" or "Do you think Brycen can outrun a Cheetah?". His classmates want to interact with him but in that setting it is hard when Brycen can't talk to them, but it was great to see that he isn't ignored or forgotten!!!

After lunch it was playtime at the playground, organized chaos with all those kids, sometimes that means trouble for Brycen. The only sign of trouble was the line to go down the slide, some boys would budge infront of Brycen, when Brycen finally noticed that this would occasionally happen he took matters in his own hands. Brycen shoved a boy down, I then had to redirect him, and another teacher grabbed the other boy to tell him to wait his turn. Brycen can't exactly tell the kid "no its my turn" so he pushed him. We have to try to teach Brycen another way to "stand up" for himself without resorting to violence.

Brycen then got back on the bus to head back to school. He had a great day, and his Dad is so proud of him. He spent all day intergrated in his general education kindergarten class on a field trip to a zoo and a park! He simply amazes me, he has overcome so much, today was just another example of how great my son Brycen is!!!!!

Once again...

Once again, Brycen proves his strengths to us!  I know I've shared before that it seems like we will experience a very negative event or behavior with him, to them have something very positive follow shortly after to keep our heads high.

Last week, Brycen had a very rough time.  He had just had his tooth removed and I think he was experiencing some side effects from his body still trying to rid of the anesthesia as we had been warned about.  It was an exhausting week, both physically and mentally...and I spent the weekend just hoping this week would be better.

This week, we found out he has a little friend at school in the kindergarten room...and tonight he rode his bike for .8 miles on the sidewalks around town.  We had taken him to a parking lot across town away from busy streets to practice riding...and he was doing so well steering and continuously riding that I told Mike I wanted to try to walk part of the way home with him on the sidewalks.  So Brycen and I set off...he on his little bike with training wheels and I on foot following and encouraging him.  Mike & Aubree would drive around checking on us and Aubree would shout "Go Brycen Go!".  An older woman and older man that was outside commented how great he was doing...and he even waved with prompts to two other people outside of their house.  He would get distracted by a car driving by, or a dog barking, or the smell of someone burning wood in their fireplace, but he would get back on track and keep riding like a pro.

After .8 miles (Mike drove back to check the distance), he was beginning to wear down and was making a lot of noises and stimming, so I decided it was time to stop.  How amazing for him to make it that far on his first real bike ride?!  I am looking forward to future times with him on the walking path near our house...and next year he can even take his bike camping with Grandma & Grandpa like other kids his age do.  Tonight was a moment I will never forget!  This special time with my son will be etched in my memory and cherished.  I fell in love with him all over again tonight as I watched in awe of his determination to learn and succeed!

Mom & Dad

As most of you know, Brycen has not clearly said "Mom" or "Dad" for quite a long time.  I have not heard "Mom" since when he first began regressing over 3 years ago, and he lost "Dad" shortly after that so it's been at least 2 1/2 years for Mike.  We recently programmed both into his device hoping that would encourage him to imitate it better...and his SLP at the clinic is working hard on this each week.  We know Brycen understands we are his mom and dad, but it would be nice to hear it again:)

Last night while Brycen was "helping" Mike grill dinner, Mike was quizzing him on some letters as Brycen has been working on writing letters and shapes into the air.  To his surprise, Brycen was able to write "Mom" in the air...so then we asked him to spell "Dad" and he did so!

After dinner, we asked him to write them on paper.  We didn't have to tell him which letter came next, only needed to help him remember to put the little tail on the small "a" in "Dad."  What an amazing surprise after he had been having such a rough week!  Either someone has been working on this without us knowing, or the repetition from the written labels on the device buttons has helped him with spelling!  While writing this post, I kept thinking about how backwards things are with Brycen...he can write our names, but can't verbalize them yet.  We are trying so hard to use his talents to help him push forward instead of focusing so much on the the areas he has the most deficits.  Writing seemss to be a huge positive area for him!

"Heaven's Very Special Child"

This was posted on FB by a mommy friend that has a son with a disability.  I questioned God for a long time after Brycen was diagnosed, and now that I am beginning to accept how life is, I don't question God near as often anymore.  I was raised Catholic and Brycen's diagnosis made me question the beliefs I was raised on more than anything else.  I have recently begun attending church again and I find peace with going and thinking about the teachings of God after every mass.  I know there is a reason for everything, and I know that Brycen was given to us to show us how to be better people, parents, and to teach us compassion for anyone that may be different.  I have learned that judging and having rude thoughts and making rude comments about others is not fair to them, nor is it fair to my children who I am here to set an example for.  Brycen has changed me for the better!

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
 
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
 
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
 
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
 
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
 
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla

My Heart Leaps...

My heart leaps with pride every single time I open Brycen's school bag to find a picture he colored or project he worked on in kindergarten...and when I flip that paper over, I find my son has written his name on the back once again.  It may not be able to be read by all, but I know it's his name...and I know how hard he worked to achieve this.

This is the first project that came home from school this year with his name written on the back.

I also LOVE when Mrs. J or an associate records a message for me on the device.  It may not be Brycen's real voice, but I know it's the next best thing to him being able to tell me about his day.

Thank you, Mrs. H, Mrs. J, and Brycen's associates for each of these gifts!  It means more to me than you will ever know!

Always Wanting More

Why is it that what we have never seems like it's good enough?!  We always want more...more toys, more money, more clothes, etc.  We can receive wonderful gifts and we still crave more. 

This is how I feel right now with Brycen.  I have been blessed with two beautiful and healthy children and a hard-working & honest husband.  While so much in our lives is moving forward and going the way we were hoping for, part of our life continues to just stand still. 

Two years ago when Brycen was diagnosed, I wanted for the pain to go away.  The pain that I couldn't make the Autism go away...the pain that I felt every single day when I heard another child his age talking...the pain of not knowing what his future would bring.

A year ago, I wanted for Brycen to be able to communicate.  For the screaming and hitting to go away...for him to feel like he had control in his world...for me to feel like I had a connection with him through communication. 

Now that the daily pain has gone away and we have found a means of communication for Brycen through his device, I can't help but want more.  Brycen (and we) have worked HARD these past couple years.  We are doing what we can within our means for Brycen that is being recommended to us and what we believe in.  Why does it seem like it's not enough?!  Others have seen such improvement with the exact same things we are doing...others that are younger than him are improving faster...even his own sister two years younger than him has flown past him in almost all areas of development.  Will it ever be enough for me?  Am I setting my standards too high for him?  Am I just not accepting what God has given us? 

I have so many wishes for Brycen and for us.  I wish for him to be able to communicate better and decrease his frustration.  I wish to hear "I love you, Mommy."  I wish for him to have a friend to play with.  I wish for him to be able to participate in extracurricular activities like other kids instead of heading off to therapy three days per week.  I wish for him and his sister to be able to play in the same room without him being aggressive towards her.  I wish I didn't have to repeat myself so much to him.  I wish I didn't have to plead with God every day to give me the patience that Brycen deserves.  I wish I didn't have to count up service hours, sign papers, make phone calls, etc most days of the week.  I wish...I wish...I wish...could go on forever.

Just because I wish for more for Brycen, does not mean I don't accept him for who he is and love him any less.  I just wish some days could be easier...and that some days would seem like Autism is not running our lives. 

I just want MORE for Brycen.  I won't stop until I can give him more...and though it may never seem like enough, that will be what pushes me to give him even more than what we thought would be enough.

Go, Brycen, Go!!!

What a wonderful surprise to come home from church to find Daddy & Brycen outside on the sidewalk with Brycen's bike.  As we drove closer, I could see those little legs pedaling away...and Daddy not even helping!  This video was taken by me in front of our house.  Unfortunately, Blogger would not allow me to load the other video of him riding towards me, a little uphill so he does pause or accidentally applies the brake and needs a little nudge from Mike to keep going.  This video has been loaded onto our FB pages instead.  The second video which Blogger did allow me load below is of him riding to the corner which is slightly downhill...and you can see he gets some momentum and Daddy ends up having to run next to him.  We are so, so, so thankful for the hard work of the physical therapist in the last few weeks to help him get to this point!  She knew that he had the ability to do it, but just needed the extra encouragement to realize it and knew it wouldn't take long.  I don't think any of us thought he would have come this far in only a few weeks!  Once again, just when certain things can bring us down, he pulls through with something amazing that keeps our momentum going in this fight.  We will NEVER take for granted these things!

NEXT UP, RAGBRAI 2012!!!!

Brycen & the Dentist

Brycen had his dental procedure completed this morning.  He did awesome and we have noticed no side effects from the anesthesia to this point.  Unfortunately, the tooth could not be saved (it was a baby tooth in the back of his mouth), but we did find out that the dentist is almost positive there was a developmental defect in the tooth where the enamel did not form properly so it really couldn't be prevented. 

Brycen getting sleepy after the oral meds.

Brycen's tooth that was removed...the top
had a huge hole with the nerve showing.

We're not sure how much Brycen understood of our visit to the hospital, though we do know the oral sleepy meds they gave him shortly after we arrived has an amnesia effect which prevents him from remembering the need to hold him down for it or anything else.  Once he was in the "operating" room, he was given a small amount of gas in front of his face to put him to sleep further.  Then they were able to administer the rest of the anesthesia through an IV in his foot.  He came out of the anesthesia great...and was even a big boy to sit on the bed to be wheeled back to us in the private room.  He did start to cry for a few minutes, but calmed down within 10-15 minutes and was ready to watch YouTube train videos while we waited to be discharged.

Being wheeled back to us after recovery.

Watching YouTube train videos while waiting for discharge.

Due to it being his back tooth that was removed, he needed a spacer inserted to prevent his 6yr molars from coming in crooked.  Unfortunately, the spacer is something that might bother him and could possibly pry away from his gums if he wanted to.  If he does that, we are to return to the dentist to have her check on it, as well as the next sets of molars will be watched.  If they do come in crooked, he may need a future procedure to have those removed as well to prevent further problems.  Otherwise, we are in the clear until his next appt in March.

As of right now, I understand that he still needs to be watched over the next several days as he may have some hidden side effects to the anesthesia such as regression.  We are not seeing anything right now, but since Autism is a neurological disorder, anesthesia can interact with the brain in other ways that it doesn't for the "normal" child.  Thank you to everybody who gave advice over the last few days as we prepared for Brycen's first time with general anesthesia!  I appreciate all the knowledge and support during a very nervous time!

Brycen's Newest Accomplishments!

Brycen has made some small but positive strides in the right direction in many areas this last week.  He is doing well at handling the full-time school schedule and the increased therapy schedule.  The therapists even mentioned adding a 4th session on Friday mornings later in September but we've opted not to do this as he would miss some important parts of the school day at that time.  We're really having to make sure he is getting the "best of both worlds" by getting 1:1 therapy on specific areas and socialization/routine with the school.  We are currently happy with the schedule we have worked out with both places and we will soon be adding SCL home services two times per week soon which will help him work on more socialization and community skills like safety.

One of Brycen's new accomplishments this week is drawing shapes in the air!  He is able to do a square, circle, and triangle...and will make a noise with each line.  I think this is a combination of both therapy and school helping this progress along.  He has been doing this more often during mealtime..he'll stop eating and just start drawing in the air.  He is working on so many things in kindergarten that I am programming many more things in his device each week for the aides/teachers to use.  Most recently, kindergarten is working on sight words.  I can't believe my little boy is working on reading!!  They have only worked on two so far, and of course reading is a little different for him since he isn't able to verbalize much, but having it programmed on his device allows him to participate when the word comes up in the book they are working on. 

The second accomplishment this week came in physical therapy.  He is now doing two sessions a week overlapped with one of his other therapies.  The PT that is working with him is so energetic and eager to work with him.  It makes me so happy to see how excited he is to see his therapists each time.  Our main goals in PT is for him to pedal a bike, as well as increase his muscle strength with jumping and balancing.  He was able to do one entire pedal around on the bike this week during therapy!  We took him outside today to work on more pedaling (as his therapy was cancelled today due to the holiday), and he was trying really hard to push each foot around.  He is just having a hard time knowing to push the opposite leg next.  We walk behind him and touch the back of each foot saying push and help him get started, then reach for the other foot.  It's exhausting!!  His regular speech therapist returned from maternity leave this last week also and he was excited to see her!  She commented about how far he had come in so many areas in the last 5 weeks...which of course made me glow with pride. 

The 3rd accomplishment this week happened this morning when he was getting dressed.  OT asked me a week ago to bring in a zip up and button up shirt for him to work on.  He was doing so good at the zipping and buttons that they wanted him to work on it from the angle of getting dressed, but of course Brycen wouldn't wear the vests they have at the therapy place.  While getting ready this morning, I encouraged him to pull the zipper up on his shorts...and he did it!  He even held the bottom of the zipper to hold it straight like a pro!  He was also able to do the button with my help to pull the shorts away from his waist so he could see it better.  He fumbles around a lot, but he shows so much more willingness to do it now than he did just a couple months ago. 

We are so proud of his determination and eagerness to learn!  It's amazing how much he really takes in from his surroundings and eventually will surprise us with his new abilities when we least expect it. Here is a short video of part of his "therapy" session outside today where we worked on jumping up and down the small step in the front of the house.