"When one door of happiness closes, another opens;
but often we look so long at the closed door that we do not see the one which has opened for us."
Helen Keller

Tuesday, May 22, 2012

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!

Saturday, May 19, 2012

Walking For Autism 2012


Three weeks from today at this exact time we will be starting our 2 mile walk in support of Brycen and all others affected by Autism in Des Moines.  This is our 3rd year as Team Brycen and each year is more meaningful to us. 

As of today, Team Brycen has raised over $5100 meeting and surpassing our $5000 goal.  We will have almost 30 people walking that day in support of Brycen. 

Even though the walk takes a mere 45 minutes or so, the meaning behind that time lasts the entire year.  I know I've blogged in the past about how much this day means to us, but I don't think it can be said enough.  We have very few people in our physical life who truly understand what it means to be a parent to a child with special needs.  This will always separate us in some way from other family and friends...not in a negative way, but it just will.  Autism encompasses so much of our daily life...from the routine we have at home, to the places we can or can't go with Brycen, to who we allow to care for him.  I know there is a saying that a mother thinks twice, not just for herself but for her children.  I think parents of special needs children think three times...once for themselves, once for their child as a child, and then a third time as they take into consideration the challenges their child is presented with. 

Before, during, and after the walk on June 9, we are surrounded by parents/caregivers who "get it."  Not just for the moment, but for the lifetime.  Even though I don't know 99% of the people that will be at the walk, they are my "family."  Not that I don't cherish my blood family or my close friends, but there are different connections with this "family."  I don't wish for anyone to have to parent a child with special needs...but I do think belonging to the special needs "family" has made me a better person.  More understanding of differences in life and far less focused on the mateial things. 

Thank you for your past, present, and continued support of Brycen and our family!  We are grateful for each and everyone of you who has made a difference in our lives through prayers, donations to the walk, kind words of support on those difficult days, and cheerful words of encouragement on those positive days. 

If you would like to sign up to walk (the more the merrier!!) or make a donation in support of the team, this link will take you to Team Brycen 2012 fundraising page. 
http://www.walknowforautismspeaks.org/faf/search/searchTeamPart.asp?ievent=998348&lis=1&kntae998348=732D6DF1E1A8489DB2A59CFB8CD81991&team=4940637

Thursday, May 17, 2012

Bye-Bye Kindergarten~~~Hello 1st Grade!

Today was the last day of school for Brycen.  He is officially a 1st grader now!!  Where has the time gone?  Can't believe he has completed 3 years of school already and will be turning 6 in two months! 

Here is one last picture of him coming home on the school bus.  This is one part of school he is definitely going to miss over the next 3 months...never thought I'd be saying that a year ago!  Next year he will not only be riding the bus home a couple days per week, but also will be riding to school each day! 


So proud of my big boy being a 1st grader now!

Thursday, May 10, 2012

IEP = Big Plans for Brycen

We gathered with Brycen's educational team a few weeks ago for his annual IEP and walked away with a brand new plan for our little buddy.  I didn't update immediately because we still had a few things to work out in the plan before it was finalized and wanted to be able to post about all of it at one time.  These are the main points that will interest most of those familiar with Brycen and his services.



1.  Brycen is progressing far faster than we could ever imagine.  This meeting reiterated how he is thriving being in the general ed classroom for part of the day with a 1:1 associate.  One line that stands out from his written IEP is "Brycen is learning some of the general education content at an age-expected pace.  Once he learns something, he is holding onto it."  So this is great news, right?!  Of course.  The next line is "His inability to attend to task and follow teacher direction will impact his ability to show what he knows.  An adult to help with keeping him on-task, restating directions, and to interpret his communication attempts will be necessary for Bryen to experience success in general education content."  So it's not what he is learning in gen ed that is a problem for him, but how he is learning it and how much help he needs to pay attention to learn it. 

2.  His communication continues to be a big area of concern.  We all know communication is a huge factor with all children on the spectrum...whether than can verbalize or not.  In Brycen's case, he is unable to verbalize but we know it's in there...just need to give him the tools like his "talker" and the I-Pad at school so he can communicate with us more and show what he knows.  Brycen will continue to receive speech therapy at school 40 minutes per week in addition to his time with the special education teacher and associates (who of course are constantly reiterating communication with him).

3.  He has come a LONG way with his writing skills.  While he needs complete assistance to come up with topics to "journal" about and typically needs prompts to answer questions using his "talker," he has the ability to write out every letter of the alphabet capital and lower case...with some modeling need for a few of the letters to get them correct.  He is struggling with writing within certain lines, spaces, etc...so he will continue with Occupational Therapy at school 120 minutes per month to finetune these skills using some special paper and tools. 

4.  Since his progression in the educational aspect is holding steady and showing no signs of regression over breaks, he does not qualify for the typical extended school year program.  BUT, the entire team agrees that he is most definitely at risk for regressing in the areas of routine and socialization with peers.  The team has worked out a plan to have him participate with a 1:1 associate this summer for 7 weeks, up to 6 hours per week, at the local YMCA program where he can regularly practice his socializing and have a routine that is similar to that of the school environment.  We are very lucky in that one of his regular associates is willing and able to do this so we know he will be in good hands and he will understand the transition better with her help.

5.  Brycen will participate in all grade-school testing like the other 1st graders (oh my goodness, my son is going to be in 1ST GRADE!!) with some exceptions to having no time limit and having an adult be able to assist him with filling in the answers after he comes up with them, etc.  Of course there are some things they are unable to do due to educational laws like read certain questions to him in the reading area of testing, but they will accomodate him as much as possible to align with his special needs.

6.  Lastly, this is what we might consider the biggest change of all for him.  It was agreed by the team that he is doing so well during a few areas of the day with participating and following directions that there will be times throughout the day where he will NOT need a 1:1 associate assigned to him.  These times will include PE, music class, and recess time...as well as some time here and there in the general ed classroom that doesn't involve specific learning times.  The day after the IEP in April, the team immediately implemented this part of the plan with phasing out the associate during these times.  Doing this the last few weeks of school will give the team time to determine if it will work out ok and spot any kinks in the plan.  To us, this is a huge step towards his independence!!  It shows just how much he has progressed in a setting with his peers and it also shows just how hard the associates/teachers have worked to get him to this point in these areas after just 9 months of school.  So far it seems to be going well...as these are 3 of the school setting he very much enjoys! 

So as you can see, there have been some major changes in his plan that mostly stem from how much progress he has shown over the last 9 months.  He enjoys school, enjoys his peers in kindergarten, as well as enjoys his friends in his special education room as well.  It seems like all of his teachers and associates also enjoy working with him.  Though we know he can be naughty just like any other 5/6 year old boy, he has so much determination to learn and have fun!  We are so proud of his achievements this year and are in awe of just how far he has come in the last 3 years since his initial diagnosis.  Thank you to all of those team members who have had a part in his life and pushed him to be the best he can be!  He doesn't like to be pushed outside of his comfort zone at first, but as we can see it is paying off in so many ways.



Wednesday, May 2, 2012

Brycen is officially...

POTTY TRAINED!!! 

We waited to share the big news until it had been an official month of peeing on the potty.  Unfortunately he is not completely trained with his bowels yet...he'll go a few days with having accidents and then have a few really consistent days of using the toilet, then backtrack again.  But we choose to look on the good side and see how far he has come in just a couple months! 

The first few days of extensive training were rough for all of us, but it paid off.  We still have him wear a pull-up underneath his underwear when going to school or away from the house just in case, but at home he only wears underwear. 

Even after a month, the excitement has not worn off of watching him run into the bathroom, complete his duty, wash his hands all with NO PROMPTS before coming back to play.  He has gotten into a good routine of at least trying before we leave the house, as well as going after waking in the morning and before bedtime.  He was even staying dry at night for so long that we decided to rid of the overnight pull-ups as well!!  Now when he wakes up in the middle of the night, he either goes into the bathroom right away or after a prompt from us.  I can't remember the last time he wet during the night in his pull-up! 

Not only are we saving money on the overnight pull-ups, but I have been able to cancel his last two shipments of day time pull-ups from the company that was delivering/billing them to Medicaid AND our garbage is so much lighter!! 

So to all of those parents who are in my "old" shoes just a couple months ago, it CAN happen!  We went from having a child who wouldn't even sit on the potty, screamed when we made him, to not even having to prompt him to go during the day because he really gets it.  Your child can do it too...just find the right time and right environment and set him or her up for success!

Autism and Our Family

"Autism"----It's one word that can change the life of a child and family in so many ways. Autism Spectrum Disorders are being diagnosed at a rate of 1 in 68 children currently. If you do not already know someone that has been diagnosed, the statistics say it won't be long before you do.

Our son developed typically until around the time he turned 2 years old. We heard words...we saw him play with other kids...we watched as he played with his toys appropriately...we made eye contact with him...overall we understood his wants and needs. In a matter of a few months, that was all taken away from him. He began lining up toys, lost all of his words and signs except for one word "ball", ignored other kids, could not sleep through the night, lost eye contact and the ability to follow directions, and he had no way of letting us know what he wanted or how he felt. It was heartbreaking to see something happening to our child that we couldn't stop!

Brycen began receiving home therapy 1-2 times per month for about 6 months before we realized it wasn't just developmental delays. We knew it was Autism...we just didn't want to say it outloud to anyone. He was officially diagnosed with Autism (classic form and regressive), as well as Mental Retardation in August 2009 by the University of Iowa Hospitals and Clinics.

We continue to learn as we make our way through this journey with Brycen and we will continue to share this journey with you on this blog! The blog has been a great therapy for us to be able to vent our frustrations and struggles with accepting that we have a child with special needs, while sharing how blessed we are to have a child teach us what life truly means. It has also been a great way to inform others of his progress and changes over the last couple of years.

Thank you for your support of Brycen and our family! We hope you are able to learn something through this blog no matter if you are a parent of a child with special needs or a neurotypical child, a teacher or therapist, a family member, or just someone that is interested in the journey that a family goes on as they learn their child is battling a life-long disorder.