"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

Monday, June 18, 2012

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!

Friday, June 1, 2012

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

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.