Life Takes Over

Dear Brycen: The Joys & Challenges--

I feel so bad for neglecting you over the last few months, but life has just taken over.  I promise that I think about you frequently and it crosses my mind each week that I should be blogging about something Brycen has either achieved or been battling, but I feel so much better about things that it isn't at the top of my list anymore to use the blog as therapy for myself...which was the main reason I started you in the first place back in June 2009.

Three and a half years have gone by.  We've had our ups and downs, lots of tears and laughs.  You helped me through probably the roughest patch I have experienced in my life and for that I am eternally grateful.  You were there when I needed you, whether it was daily, weekly, or even multiple times a day!  You provided an outlet for me to "talk" things out about what our family was experiencing and you gave me the chance to keep family & friends across the country updated on Brycen and his joys and challenges. 

I need your help to determine what direction we need to go with our relationship.  When I first started blogging with you those years ago, it was devastating.  I wasn't sure things would ever get easier.  Thankfully they have!  It's true that time really does heal wounds.  The dream I once had for my son from the moment he was put in my arms right out of my tummy...it did not vanish.  It just took a roller coaster ride...up, down, to the left, right, faster, slower.  Yes, life is different than what I imagined when we first found out we were pregnant with Brycen, and even when we found out we were pregnant with Aubree.  But that doesn't mean life isn't just as precious and special!  If anything, it's more meaningful.  I have learned more over these years than I imagine I could have with two typical-developing children. 

So, I need to decide where we go from here.  We're most definitely not breaking up, but we have reached a milestone in our relationship.  A good one of course!  So let's see where this takes us and the path that will lie before us. 

With much thanks and looking forward to the future,
Melissa

P.S. Our little boy is amazing and accomplishing things we never even dared to dream about 3 years ago! 

Time to Catch Up!

Has it really been two months since I've blogged?!  Wow!  I guess now that I am using a Facebook page for the small updates, I forget about blogging about the big updates.

We better catch up on what has been going on in Brycen's life since the beginning of August!

First of all, Brycen started 1st grade.  He has been in school almost 2 months already and is adjusting very well to the schedule.  He has made strides in attending to his homework at home, as well as trying harder for his spelling tests each week.

For the first 4-5 weeks we were having A LOT of concern about his hyperactivity and inattentiveness.  He was being very aggressive, fidgety, could not sit still or pay attention, and doing A LOT of sensory seeking.  We were originally thinking about changing his medication by seeing his psychiatrist earlier than we had scheduled, but first we decided to throw in more sensory breaks.  The teacher/associates at school integrated some more sensory tools into his day, as well as we invested in some additional sensory tools at home.  HUGE difference in the last couple weeks at home...and we meet with his teacher for conferences tonight so we are hoping to hear the same from her about school.

One of the main sensory tools we had been wanting for a long time for him but were unsure of because of cost and space was a therapeutic swing.  He has always loved the swings at therapy and at school.  Thanks to Brycen's Papa and Grandma Timmer, we were able to make that become a reality for him at home sooner than we thought!

The other sensory tool we were able to purchase recently was a weighted blanket for him.  We chose a company that custom-makes them when ordered so we chose a Thomas the Train material to match his bedroom (and his likes) in a medium size-6lbs.  This just arrived this week and he has only slept with it two nights already, but guess what??  He slept all night both times for almost 11 hours each night!

In August, Papa and Grandma O'Connell stayed with the kids while we took an adult only vacation :)  While they were here, they went fishing and Brycen caught his first fish!

In September, Brycen went to his first high school football game for our town and he LOVED it!  We were there about 3 hours through the JV game and then thru the halftime show of Varsity game when we asked if he was ready to go home (it was COLD!) but he firmly said "no" so we stayed a bit longer.

Also in September, we had our family pictures taken by Christi Marie Photography!  Wow is all I can say when we compare the difference from last year's picture session to this year!  Huge difference in Brycen's attitude and ability to handle the camera & even being posed for some :)  Of course it helps that we start the day at an old train depot...happy boy!

We were even able to take some fun family pictures!

 

 

Lastly, I need to take the time to brag up Brycen's progress a little more here!  Brycen not only saw the dentist for his check up this week, but he also needed to see the doctor for an ear infection.  Guess what?!  He did amazing!  Minimal struggle with the dentist so I did need to hold his head still for her to look closely at his teeth, and he put up a little fight with the white toothpaste the dental asst was going to use (he recovered once she found some blue!), but overall huge improvement.

 

At both the dentist and the doctor's offices, he looked up when his name was called which shows his attention is progressing!

 

When seeing the doctor for what ended up being an ear infection, he let them look in his ears and do a basic check up with no fighting.  Since he was not running a fever, I asked for him to get his flu shot while I had him in the office.  Minimal struggle there too!  I held his arm down while he sat on my lap, and though he pulled away when she did the shot, he immediately recoved and has shown pride in his band-aid :)

 

Sorry for the long post!  I even deleted a few things because there is so much to catch up on.  I really need to get better about this and post more often, huh?

 

Thanks for all the continued support for our little boy and his daily struggle with Autism!

The Slap of Reality

All special need's parents can relate to those moments when you feel like you are slapped in the face with reality.  They don't seem to happen as often anymore for me, but I felt it yesterday.  I was sitting in the waiting room of the therapy clinic while Brycen was in his one hour speech appointment.  Nothing specific brought it on, but I immediately thought "How did this happen?  Why did it happen to us?" 

The "why" question rarely pops up anymore because I know there is no use in trying to dissect the entire happenings of our life, my pregnancy, the first two years of Brycen's life, etc.  It's just not worth it when the present takes so much energy and emotions to deal with by itself.  Most of my "slaps" tend to be "how" now.  And it's not always negative but may be "how can I make this easier for him?" and just how to handle the day-to-day stressors for both him, us, and his sister. 

So, here I was sitting in the empty waiting room and these two questions go through my head.  I'm not quite sure why it happened then because he's been making slow but fabulous progress in so many areas and I am so proud of him.  Of course my eyes fill with tears and I just hope that the receptionist doesn't notice or that none of the other therapists walk through the room until the tears dry up.  Because I hate when someone outside of my immediate family sees my vulnerability about this.  I don't want people to think of me as anything but strong for him.  I WANT to be strong for him...but sometimes reality just slaps me in the face and it gets the best of me. 

We have no clue what the future holds.  No doctor or therapist can tell us what the next year, 5 years, or 20 years will look like for him.  So, I just cling to the present.  Try not to dwell on the past and the "why" and "how", and though the future will haunt me frequently, I also try not to dwell on that.  The present is already taking over so much of our life that I just don't know what more I can fit in right now. 

Summer is winding down...

It's hard to believe that Brycen will be back in school two weeks from tomorrow...1ST GRADE!!  I'm excited to see where this year will take him with some increased independence built into his IEP, a new teacher, and some new classmates.  He made tremendous progress in kindergarten that our hope is the progress will just keep snowballing with every additional year.

Brycen just finished his Extended School Year (ESY) hours where he was mainly working on socialization and routine, while continuing to work on communication with others using his device.  He met with a school associate a few times a week for most of the summer and they spent time with the summer YMCA group.  We are AMAZED at the progress Brycen made with this addition to his services!  He looked forward to going and was always surrounded by his peers.  The kids who ranged from his age to a few years older seemed to really accept him and embrace his extra needs.  It challenged him to be accepting of his peers around him, to share and take turns, as well as to learn how to communicate effectively with him.  He really thrived in this environment and I hope it's something we can continue with next summer!  Not only did his summer associate work on all of this with him, but he also overcame a lot of his fear around swimming when the kids would have free time in the pool in the afternoons.  He became more independent in his swimming and with the help of a swimvest that a friend so graciously is allowing him to borrow, he will actually jump into the deep end himself and swim around!  Next up...swimming lessons this year so we can build his confidence and our trust with him around water.

Brycen continues to attend speech therapy at our local clinic 3 times per week and will continue to do so once school starts.  The best part about this is we were able to push his therapy times back to 3:30 which means he won't miss any school this year!  How is that for having the best of both worlds?!  Depending on his fine motor and other skills, we may look into adding Occupational Therapy back on after school starts.  As of now, he seems to be keeping up with the Physical Therapy parts so we are not looking into that in the near future. 

With school starting soon, we will begin a new routine with both kids.  They are going to be riding the bus every day to and from school (or to therapy on those days for Brycen)...which I guess means a new routine for myself as well and more independence for all of us!  My babies are growing up and getting to be so big!

Finally, I wanted to share what my personal goals for Brycen are this year.  I would like to see his communication skills continue to improve whether it is through verbal, gestures, using his communication device, or sign language.  I also would like to see his aggression decrease at both home and in the school environment when he is frustrated.  I want him to understand he will have to do "work" at school and if he chooses not to, he will lose privileges such as recess or computer/iPad time.  I want to see his comprehension of reading and math continue to progress.  I want him to enjoy going to school and building relationships with his peers and teachers. I want those who work with him to enjoy it and to learn something from him.  Most of all, I just want to see him happy and thriving like he did this last year. 

Thank you for being a part of Brycen's journey!  He is very very VERY lucky to have so many supportive and encouraging people around him as he shows the world what he is made of!

Happy 6th Birthday Brycen!!!

Brycen turns 6 today!  Can't believe 6 years has gone by since he was placed in our arms and we learned what unconditional love really was.  Little did we know that day what the next years would hold, but neither of us would change anything about it...well, maybe just a little...but none of the important stuff of course!

I wasn't too tech savvy when Brycen was born and don't have any digital pictures uploaded from his first couple years, so I went back to his 1st year scrapbook to reminisce about those amazing (AKA sleepless) days.  Ironically, some pictures stood out at me that I wanted to share (and some that are just cute and I couldn't resist!).  So here we go...

Brycen's first pictures...8lbs 5.4 ounces of pure joy!

Mommy & Me snuggle time

Daddy & Me play time

Our little glow-worm...Brycen was very jaundice and required home nursing & a biliblanket for several days.

Brycen was very lucky to meet all 4 of his maternal great-grandparents.

Play time with Morgan!

Ditto...only Uncle Pat's turn!

Peek a boo...I love you!

Papa Mark's cane...now what do we do with these things?

First vacation...Cubs game in Milwaukee!  Prior to regression he had no issues with putting things on his head.

Wow...we have aged in the last few years, huh?

Lovin his little pool!

Matching outfits with Ethan at Uncle Pat & Aunt Erin's wedding

His best friend...our late doggy Mason

I'm a little teapot!  Prior to regression he loved singing and doing actions to songs.

Pictures and smiling for the camera were very easy then!  Happy happy boy!

He even liked getting messy with cake...now he is very neat with his cupcakes so he doesn't get too messy.

Still loves those goats years later!

Remember when haircuts were easy and it became naptime?  Whole different story now.

I hope you enjoyed a look back on Brycen's first year of life and some of the fun times we had!  Some things have definitely changed after he regressed at age 2, but some things remain the same. 

Even on the tough days, this boy can brighten anyone's day with his infectious giggle and sweet blue eyes!  This little boy is why we fight so hard against Autism and to give him the life he deserves!

Happy 6th Birthday, Brycen!!  Mommy & Daddy love you!

Beginning of Summer Update

I am so sorry it's been over 2 weeks since I've updated!  I have a feeling the summer is getting away from us already.

Just some brief updates on Brycen now that summer is in full swing:

• He started his summer school hours last week where he is meeting with an associate at the local Y to prevent any regression in routine and socialization.  The first week was great for him!  He seems like a little chic magnet...saw a couple of the "older" girls sitting around him after I dropped him off on Thursday.  They are meeting 3 times per week for a couple hours each time.
• He also started working with a new SCL staff, Alicia, last week.  Yay for finding someone local that is able to work consistently with him this summer (and hopefully during school year if her schedule allows).  He showed her his attitude right away about having to wait...but have no doubt they are going to have some fun this summer!!  He is already getting very excited when she shows up :)  They will be working together 2-3 times per week all summer.
• He continues with speech therapy three times per week.  He has been working with a new speech therapist that was recently hired full-time at our local clinic.  He is still feeling her out but I can tell he enjoys her as he will run right back there.  We enjoy getting feedback from new therapists to see if there is anything we are missing and they always have new ideas that we haven't thought of!  We do miss Bridget though...but we have plans to continue seeing her and her family on the side :)
• Sleep is the same old...up most nights around 3ish. 
• Aggression is the same...though I'm becoming less and less tolerant of this lately.  He's almost 6 yrs old and getting bigger which means he can do a lot more damage to everybody he is aggressive to.  It HURTS!  Time to get tougher here.
• He's doing amazing with eating!!!  He's finally gaining some weight and filling out a little though still a skinny thing.  He's consistently trying some new things though may not take more than a bite...and he devoured 1/2 ear of sweet corn last week so that will definitely be on the weekly menu this summer!
• Potty training is frustrating!  Since we started in early April, he has been great with peeing...up until this last week when he started peeing in his pull-up again A LOT!  Now you are probably wondering why is he in a pull-up instead of underwear after all the success we had a couple months ago...well, the kid regressed completely in pooping.  Since school ended, he has only had a handful of successes on the toilet with that.  I thought it was just a little stage with change in schedule, but looks like it's more than that especially since he started peeing in it as well.  Sooooo, it's back to the basics again!  I refuse to let this regression take him back that far...we worked HARD in April on this success.  Regression is always in the back of my mind with EVERYTHING he accomplishes developmentally, and being he is so close to the age the U of I doctors initially mentioned, it is definitely crunch time!

Thanks for staying updated on Brycen and our family!  As you all know, we participated in the Iowa Walk Now for Autism Speaks in Des Moines on June 9...and I have tons I want to share with you about that soon!  It definitely calls for a post of it's own, or maybe even two or three!

Autism is a Mystery ~ Supportive Family & Friends are not!

Have you ever spent a couple hours surrounded by complete strangers that feel like family?  If so, then you know why I look forward to the Autism walk each year.  I don't have to know each of the hundreds of people's names to know that these are the people in my world that "get it."  Though we are gathering to fight one of the biggest mysteries in the world and obviously it's not a celebration of Autism, we still get excited to be surrounded by faith, hope, and A LOT of love for our children who have daily obstacles that many of us just take for granted. 

Did your kids answer the phone this morning with "hello"?  My son isn't able to do that...he is nonverbal.

Did your kids go outside to play in the yard without supervison?  My son isn't able to do that...he doesn't understand to stay in the yard and lacks safety awareness.

Did your kids buckle their own seatbelt the last time you were in the car?  My son isn't able to do that...his fine motor skills make that hard for him.

Did your kids sleep through the night?  My son isn't able to do that...something in his brain causes him to wake almost every night and he requires a medication to even help him fall asleep.

I could list a ton of examples of what most parents take for granted in their children!  But instead of listing more of those, I'd rather have you remember what my son CAN DO!

Did your kids ride their bike this week?  My son did too!

Did your kids give you a hug and kiss?  My son did too!

Did your kids play games on the computer?  My son did too!

Did your kids play with a sibling or friend this week?  My son did too!

Did your kids laugh and smile today?  My son did too!

Did your kids do a chore around the house?  My son did too!

In 8 days, we will be surrounded by families and friends that are taking time out of their busy schedule to spend a Saturday morning fighting against Autism!  Most of the people on Team Brycen will also have traveled from out of town to do so as well.  How amazing to have about 40 family and friends come together to show support for a disorder that is one of the biggest mysteries in the world and is becoming an epidemic as the diagnosis rates continue to rise year after year. 

Not only do we have some amazing 40 people surrounding Brycen that day...but we also have an outstanding number of people that have donated to this cause with their hard-earned money!  Classmates from when Mike & I were in school...to teachers & therapists that have worked with Brycen...extended family that may have never met Brycen...old & new friends...friends of friends that just want to support a good cause...past & present co-workers...to strangers that put money into the fundraising jars at the store.  Together these people donated to Team Brycen 2012 to raise an amazing $6333  as of this morning!!!  The generosity of those supporting us is beyond any expectation we had going into this just 3 years ago! 

Thank you to all of those people who found it in their hearts (and wallets) to donate to a cause that we will forever be linked to!  While Autism may still be a mystery in our lives...the friends and family that support us is most definitely not a mystery! 

There is still time to donate if you haven't already.  Below is a link that will take you directly to our team fundraising page where you can click on the names of any of the walkers or "general team" to make a donation.  If you prefer, you can also give me a check or cash and I will get it to the right people! 
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=998348&lis=1&kntae998348=E2B0C08AF8B244E5BCCC0D842D0F7F12&team=4940637

Brycen & Mommy's Special Day

Galesburg, IL train museum---May 22, 2012---Brycen & Mommy

Since the kids are out of school already, I decided I wanted to spend some special time with each of them this week with G'ma & G'pa O's help to watch them separately so I could do so.  I wanted to plan a special trip with each of them for part of a day to someplace I think was unique to each of their likes.  Of course everybody knows Brycen has an obsession with trains, so what better place to take him to than a train museum.  Lucky for us, the town we are living in is on the Eastern side of the state which is quite close to many train depots and museums, so I chose to take Brycen to Galesburg, IL for a little day trip.  Any mention of going to see trains produces immediate happiness in him!!

So after therapy, we packed a lunch for the car and off we went to Galesburg for the afternoon.   It's about an hour and half but with Brycen that time goes by so fast as he loves being in the car especially on the interstate where he can watch semis all day!  The only "pet peeve" of his is when we are passing another vehicle...he does NOT like us to be in the left lane for too long and will begin making unhappy noises and pointing to the right lane as soon as he thinks we should move back over.  He's getting a little better about this but you can tell it causes him some anxiety :(

As soon as we got out of the car and was walking across the street to the museum, a train whistle could be heard not far away.  Brycen watched as the crossing lights started flashing and started tugging my arm very hard to walk faster! 

After the train went by, we went into the museum, but unfortunately cameras are not allowed inside.  Luckily she said I could take pictures outside on the train cars and engine that we could tour with one of the guides.  After about 20 minutes of watching a small train layout inside (and I talked to one of the workers who believes she has a 2 yr old grandson that has Autism), we went outside with one of the guides for the tour. 


Into one of the train cars

Ringing the bell

Finally looking at me for a picture in front of the engine

In the caboose

Taking the wheel...choo choo!

Holding my new pull back train from the gift shop (and posing for mommy!)

 After the museum, we ventured next door to the actual train depot where we saw a few passengers waiting to board their trains.  During the time at the museum and depot, we saw at least 5 trains go by!!  We decided to walk across the street to the Discovery Depot which is a children's museum with hands-on activities. 

One of his favorite toys ever!

Climbing through a train "tunnel"

Tree house slide

Water room...wanting the duckie to float



Climbing the wall...this was as far as he would go and then fall down on the mat & laugh!

Of course he spent the most time at the train table

Cool set up where you roll golf balls down...

...and they come rolling back on the bottom.

Off to drive another train.

"All Aboard!" says Brycen

Before leaving the Discovery Depot, we watched another train go by on the tracks before walking down the block to a little French cafe called The Landmark (the staff at the depot said it was child friendly and recommended it for it's unique food).  Brycen was happy to sit at a table by the window and watch the cars go by.  Then we headed home for an evening treat at a local ice cream place.

Drinking pop at the cafe

Eating his grilled cheese and homemade potato chips

Holding onto the handle in the car...not because of my bad driving :)

Yummy chocolate ice cream at Yums!

I mentioned "seeing the trains"...

...then we watched the video on my camera of a train and he was all smiles.

VERY happy boy after his special day with Mommy!