Team Brycen 2012: Time to Fundraise!

Dear Family and Friends,

       The Iowa Walk Now for Autism Speaks 2012 is only two months away!  Team Brycen 2011 did a fabulous job of fundraising and was one of the largest teams walking last year.  We hope to be able to do the same for Team Brycen 2012.  We currently have over 20 family members/friends signed up to walk on Saturday, June 9 in support of Brycen and others across Iowa that are battling an Autism Spectrum Disorder.

       Autism Speaks has walks across the country throughout the year and dedicates funding to provide research to find causes, prevention, treatments, and a cure for Autism.  They also use funds to advocate for awareness of Autism and educate families and providers through various tools available on their website.  Donations go directly to Autism Speaks and none of it is given to Brycen or our family, but we know that any and all research that is funded now can give us answers in the future or prevent another family member/friend from being diagnosed.

       It has been almost 3 years since we first heard the words “Autism Spectrum Disorder” and “Brycen” in the same sentence.  We’ve had our ups and our downs, though we’re happy to share that the ups seem to be conquering lately!  Since last year’s letter went out, we were moved again for Mike’s job very unexpectedly though it has come to be one of the best moves yet when it comes to Brycen’s services. 

Brycen currently attends kindergarten.  He is in a mainstream classroom for part of the day with the assistance of a 1:1 associate.  Other parts of his day are spent in the special education room where he receives more specific help with the kindergarten materials and with the school therapists.  In addition to school, Brycen has been receiving Speech, Occupational, and Physical Therapy at a clinic multiple days per week.  He also continues to receive respite and SCL services to give us a break from his ongoing needs and to work on community, safety, & socialization goals.  Brycen has the most phenomenal team surrounding him including his teachers, associates, therapists, case manager, and many more.  He is one lucky kiddo & everybody seems to just fall in love with his contagious giggle & adorable smile!

Over the last year, Brycen has accomplished far more than we ever anticipated!  I’m not even sure where to start because it really has been a huge year as far as his development is concerned.  He received his new Alt-Chat Communication device last spring and it has helped him to have more control over being able to communicate with us, make choices, and he has even started using it to make some general comments.  Brycen is still non-verbal, but he has begun to imitate more sounds & words that we and his immediate staff are able to understand.  He learned how to pedal his bike with training wheels last fall.  He began writing his name and he has even learned how to spell and “read” many words!  He was given a Weighted Compression Vest that helps keep constant pressure on his torso to encourage staying calm and decreasing his self-stimming behaviors.  Brycen also overcame his fear of riding the bus and now loves to ride the bus home from school twice a week.  The best news we have to share is very recent!  Brycen has begun potty training in the last week!  The special education teacher & associates have worked hard at school on getting him into a routine and gave us some great tips to try at home.  He has exceeded our expectations in the past week and even had an entire 24 hours with no accidents! 

As you can see, Brycen has come a long way since being diagnosed, and more so in the last year!  One of the reasons he has come this far is because research that has been funded by Autism Speaks has given us the tools & statistics to determine how best to treat his symptoms.  Autism Speaks has advocated for medical & other funding for those with Autism therefore giving us the opportunity to provide Brycen with the therapy he receives right now otherwise the cost of an hour of Speech, OT or PT can be around $100 by itself!  Included in this envelope is a donation form for Team Brycen 2012.  Every dollar counts toward funding research for a disorder that continues to grow faster than research can keep up with right now!  Please help not only our son, but all of the children of the future so that someday when a family hears “Autism”, they will also hear the word “Cure” in the same sentence!  Donations with a check can be either sent directly to the address on the form at the Autism Speaks office in California or they can be mailed back to us.  If you are interested in making a donation online, please contact me for the link to the Team Brycen 2012 fundraising page. 

Thank you in advance for your ongoing support of Brycen and many others across Iowa!

Mike, Melissa, Brycen, and Aubree Timmer

Pee & Poop

I said it...pee AND poop.  10 years ago I would probably have been mortified to talk about someone's bodily functions like this on Facebook and a blog...but it is what it is and everybody does it.  I have spent most of my time looking at and cleaning up pee & poop for the last 2 1/2 days.  I have used those words more in my statuses on Facebook than I probably ever will again.  People are probably sick of me talking about pee & poop, but most of those people are not parents, and positive those people are NOT parents of a child with Autism.

Some kids get it on time just like typical developing children...most do not...and some never will.  A huge fear of mine is that we will be changing Brycen's pull-ups when we are old enough to draw on our social security.  Yes I said it!  We don't know when and if it will really happen...potty training that is.  It's another one of those things about Autism the doctors can't tell you.  You know, whether he'll ever speak so we can understand him, why he has Autism, and of course will he ever be potty trained.  When we completed Brycen's first evaluation through U of I almost 3 years ago, we were told around 6 years old is the average time of potty training for a boy on this end of the spectrum.  Some of my friend's children on the spectrum trained at 2 or 3...some have yet to fully train...some can do it independently...some are on a strict potty schedule...some may never fully potty train.  Brycen turns 6 in 4 months.

I'm not too fond of having to tell people (especially those who aren't very familiar with ASD's) about Brycen still wearing pull-ups.  I don't like fielding the questions and the advice is actually quite laughable at times.  It's not just a strong willed child I am dealing with and my lack of parenting skills...but sensory issues, fine motor skills, stimming, minimal attention span, lack of body awareness, lack of social skills (seeing other children go), etc.  If it was just strong-willed child, I can guarantee he already would have been trained...hence the fact my daughter is about as strong-willed and sassy as they come and she trained right before turning 3 quite easily with very few accidents in the year since.  When she was ready, she did it and it wasn't a parent being trained...she doesn't have to be taken to the bathroom at certain intervals...since day 3 or 4 of accomplishing it, she just knows to go when she needs to go.  It's quite awesome and I'm quite proud of her!  Those with Autism are an entirely different "group" of children...and the book I have been reading said that doctors agree this is the most difficult group to potty train out of all disabilities that are able to be trained (of course there are some disabilities that make it nearly impossible for control over the bladder or bowels).

With that said, I'm also quite proud of Brycen.  He battles things every day that you and I can only imagine.  One of those things he is battling right now is potty-training.  We are so lucky to have very involved teachers/associates at school that want to see him achieve this.  They gave me some fabulous ideas to get past the battle of just getting him in the bathroom.  With these tips in my head, I set up an environment of success for him starting Friday.  It's going to be a long process with him unlike the week or so people have advised me it took for their children (who aren't on the spectrum by the way)...maybe months or years just to get to the point of day training.  I'm not even looking at the fact of night training yet.  One step at a time!  We accomplished a lot this weekend...starting with Brycen just being willing to go in the bathroom and sit on the toilet. 

A year ago, this was nearly impossible without us holding him down and really, who wants to hold their child down more than they already have to for shots, dentist appts, meltdowns, etc?!  He then acknowledged the new underwear I bought him and he willingly put a pair on. 

No protesting sensory issues with the feeling of something different on his bottom.  We used a timer for 5 minutes to sit at a time...no protesting with lack of attention span for he had two special toys bought just for this occasion that would be his "potty toys" only.  We had some accidents, we had some successes...we had pee and poop on the floor, we had it in the toilet too.  It was GREAT!!! 

I never knew looking at and cleaning up pee and poop could be such an exciting time in life, but it is!  It's a joyful journey I look forward to continuing with Brycen as he shows us he CAN do it! 

P.S.  He woke up with a dry pull-up this morning and pottied before going to school!!

Light It Up Blue: April 2012

April is Autism Awareness month and we will be participating in our second year of "Light It Up Blue" to spread Autism awareness and support all of those (including Brycen!) in their daily fight against Autism. 

There are many ways you can show your support...from purchasing a blue light bulb and putting it your porch light and turning it on beginning April 1 OR you could just wear blue on April 2 for World Autism Awareness Day.  A few dollars...or something you already own in your closet...your choice!!  Better yet, keep your light on the entire month of April like we will!  Yes it will cost you a few more dollars in electricity...but what is a few dollars when you are talking about support for someone who is faced with challenges day in and day out for the rest of their life?!

We would love to see all of our family and friends show their support!  We would also appreciate if you could email me any pictures of you showing support with "Light It Up Blue" by either emailing them to me @ melissatimmer@yahoo.com or tagging me in them on Facebook.

Thanks for all you do for Brycen and us all year long!