Our "Beau"tiful Blessing

Thursday, December 13, 2018

It's Been a Long Time Coming: ZBTB18

I guess I'm not sure how to begin this post.  Sometimes as parents of special needs children we don't always know exactly what to say or how to feel about certain tests.  I've been thinking the last several days about the most recent test results for Beau. Let's go back several years and bring it to the present.

A year after Beau was born, and only months before we would be hit with his diagnosis (of partial agenesis of the corpus callosum, epilepsy, non-verbal and global developmental delay), we had been pregnant.  It ended up being a partial molar pregnancy and obviously, as a result, the fetus contained 3 sets of chromosomes, was deformed and we would end up miscarrying.  A partial molar pregnancy is a mess and isn't just like your typical miscarriage.  It was months of blood tests and lots of doctors appointments.  It turned out to be a blessing in disguise as Beau's health would take a turn for the worse just a few short months later. 

Fast forward a couple years when we were finally ready to consider having another child.  We worked with Beau's neurologist and the genetics team at the University of Iowa to run some tests to determine whether Andy and I were at risk of having another child like Beau.  They ran testing based on his symptoms and nothing was found that indicated Andy or I had passed on any particular condition to Beau.  We felt safe to try again for another child.  Delaney was born in 2012 without complication and is an extremely healthy and very intelligent 6-year-old girl. 

In August, during our visit with the neurologist, he recommended doing the GeneDX whole exome sequencing.  The genetic counselor came in and spoke with us and we decided we would all be tested and see if maybe something would pop up.  The routine testing we had done years ago hadn't provided any answers but it sounded like this might potentially give us our answer. Here is the definition from the GeneDX website as to what this test is:

"XomeDx, or exome sequencing (ES), can be used to identify the underlying molecular basis of a genetic disorder in an affected individual and is best suited for patients who have a genetic condition that routine genetic testing has not been able to identify. The XomeDx test targets exons, which are the protein-coding regions of the human genome. Exons are captured and sequenced using massively parallel sequencing."

Having almost forgotten about the testing, I was surprised when late Thursday night (while we were vacationing in Las Vegas) I got an email saying both Beau and I had test results in our MyChart.  I immediately remembered the testing and opened up our charts only to find that it said we needed to contact our doctor for the results.  Having used MyChart enough, I knew that if they hadn't found anything, the results would have been in the chart.  It was after midnight that evening and on Friday I contacted the nurses in neurology.  They let me know that we would have to consult with the genetic counselor to go over the results and she was already gone for the day.  I knew then, that we definitely had an answer, I just didn't know what that answer might be. 

Luckily the weekend kept me busy and distracted and right away on Monday morning I contacted the genetic counselor after dropping the kids off at school.  I was happy that she picked up right away. 

Imagine my feeling, when after almost 11 years, she told me, "Amanda, we found the answer."

Me: "You did?!?!"

I was excited, nervous, sad, scared all mixed into one.  Maybe I didn't want to know.  I mean, after all of these years, I had accepted the fact that God designed Beau to be unique and to teach us things about life, and the giving of oneself and he was just the way God designed him to be. 

We didn't have an answer, the doctors didn't know, it was just a fluke. We knew we couldn't do anything to change that. 

But on Monday, that answer came with the following letters and numbers: ZBTB18 related disorder.

What does that mean???

Honestly, we don't know all the specifics just yet.  We will meet with the neurologist and genetic counselor in March.  We know this is rare.  We know that this genetic mutation in Beau did NOT come from Andy or me.  If I'm being completely forthcoming here, I can't tell you how relieved that makes us feel.  You don't want to feel like something in your DNA caused this mutation.  You don't want to feel like you did this to your child.  That sounds silly and I know no one chooses to pass on some genetic condition to their child.  I just know that it provided me with a sense of relief.

We know from the counselor that this mutation matches up well with his symptoms.  Individuals affected by ZBTB18 have intellectual delays, are usually non-verbal and they have disorders of the corpus callosum as well as other brain abnormalities.  The only one she didn't see from the few other cases was epilepsy.  However, when you have brain abnormalities it seems like epilepsy is always a possibility. 

I really wish Dr. Joshi was here.  She was baffled by Beau's case for years - always wanting to pinpoint the cause.  Tests weren't as advanced 10 years ago.  She'd be pleased to know we have an answer. 

As I know there are some readers of this blog from all over the world, I would be interested to know if any of your children or anyone you know of might have this rare genetic mutation.  It's a big longshot but you just never know!  There isn't much information out there and it would be nice to compare notes, so to speak, with another family.  I could probably provide a lot of information for another family since we have been doing this for 11 years, not knowing it was ZBTB18, but knowing we had a child with a brain abnormality and learning what we've learned over the years.

So for now, nothing changes.  We keep on doing what we've done for nearly 11 years.  We treat his symptoms, we get him the therapy he needs, we give him meds to control his epilepsy, we teach others about the beauty of those with intellectual disabilities, we advocate for those who don't have a voice, we give back to our community, we raise money and build an inclusive playground, we laugh, we play and most of all we love him.  We thank God for designing Beau in such a unique and special way.  We also thank Him for believing that Andy, Delaney and I, as well as our family, would be able to rise to the challenge.  It's not easy.  It's scary sometimes.  It's frustrating some days.  It's something that we will work through our entire lifetime.  It doesn't end at age 18. 

Today I am thankful for our answer.  I'm thankful for advances in science and testing that led to this discovery.  I'm thankful that having this answer might provide scientific data and information for future families.  I'm thankful that you all follow along in our journey and share in all the highs and lows.   

I hope all of you are lucky enough to know someone like Beau at some point in your life.  They will teach you lessons you won't learn anywhere else. 

“For You formed my inward parts; You covered me in my mother’s womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well. My frame was not hidden from You, when I was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw my substance, being yet unformed. And in Your book they all were written, the days fashioned for me, when as yet there were none of them. How precious also are Your thoughts to me, O God! How great is the sum of them!” Psalm 139:13-17.

Monday, July 2, 2018

The Wedding Gift

“Sometimes those who give the most are the ones with the least to spare.” ~Mike Mcintyre

Our lives have been incredibly blessed over the years with caregivers for our children that love and care for them as if they were their own.  Finding childcare, especially for Beau, is very challenging and requires finding just the right person.  The last few years we have been blessed with Kelsey. 

Kelsey came to us the result of an ad I placed on the UNI job board.  She was attending UNI for special education and her plans included staying on to be in the Masters Program after finishing her undergrad.  Our first meeting took place via FaceTime and we could tell right away that her smile and bubbly personality would be a great fit for our kids. 

She’s been with us now for 2 years and she is our go-to sitter for our kids.  I’ve never seen someone love children so deeply that aren’t even her own.  To say she has a special bond with Beau would be an understatement. 

A year ago she became engaged to be married to her boyfriend Matt.  She asked permission for Beau and Delaney to be in her wedding.  I was flattered but quickly asked if she was sure she wanted to do that.  After all, Beau can be unpredictable and the last thing I wanted was for our children to somehow ruin her special day.  She said it didn’t matter to her and that she wanted our children to be a part of her wedding.  

As the wedding drew closer, Kelsey and Matt placed an order for 250 of the handmade Bracelets for Beau to give away as wedding gifts to those who attended.  She said she wanted to make her guests aware of Beau's Beautiful Blessings and the Place to Play Park and her own passion for inclusion. Our group was honored and 250+ beautiful bracelets were handmade and packaged with a special message for the wedding guests. 

The wedding of Kelsey and Matt was this past weekend.  Friday evening was the rehearsal and dinner. After the dinner, Kelsey and Matt gave us a check which I assumed would be for $250 for the purchase of the bracelets.  You can imagine my shock when the check was more than that and was at a level high enough to receive a plaque on the fence wall.  I sat there amazed that this young couple, both in the masters program at UNI and both working part-time would give such a generous amount of money to our playground.  I spent most of the evening fretting over it and then realized I shouldn’t be surprised because this is Kelsey’s personality and who she is. And if she didn't want to do it, she wouldn't have done it.  

One would have thought this generous and kind story stopped there.  But it was only just beginning.  

Saturday was the wedding.  It was one of the most beautiful weddings I have been to and the first wedding for our children to not only attend but to be a very special part of.  I was quite nervous, praying Delaney wouldn’t be too shy and that Beau wouldn’t get too scared by the crowd of people, to walk down the aisle.  To our complete relief and joy, both kids did amazing and it was quite a moment for us as parents.  A few years back that never would have happened for Beau.  A year ago, Delaney would have been way too shy and afraid to walk down that aisle.  She was so focused on making sure her brother held his sign and walked with her that I don’t think she had time to focus on her own nerves.  It was a big step for our kids and we couldn’t be more proud of how they did. 

The reception was amazing as well.  We walked in and were able to see this amazing table set up with a photo of Kelsey and Beau as well as our display board for the Place to Play Park.  The bracelets were there in their bags and ready to hand out. After everyone got their meals, the bridal party started their speeches.  Kelsey had told me she would be making a speech about the bracelets and she mentioned that while she would be talking, the bridesmaids would be handing the bracelets out to the guests.

I was anxious to hear her speech.  I failed to record her speech because I wanted to be fully in the moment and hear what she had to say.  I had no idea that the following words would come out of her mouth. 

You can read the full speech in the photo above but here is the part that took my breath away: “Matt and I wanted to do something special for our ring bearer (Beau) and flower girl (Delaney) and their parents to show our love for them and our support for the park.  We purchased some bracelets from Beau’s friends and are giving them to you in the hopes that you will think about kindness and inclusion for all when you see them.” 

And then there was this:

“Matt and I will also be donating all funds from our wedding to the Place to Play inclusive playground in Cedar Falls, Iowa in honor of Beau and the Weichers family. We believe and support wholeheartedly a park where all children can play together.”

And then I cried. 

I audibly said, “no you aren’t” when she said it.  I then looked at my family and said, “who does that?"  

What young couple in their early twenties donates their wedding money to a charity??

It wasn’t long before complete strangers were walking up to our table handing us cash for the playground.  After the Dollar Dance, Kelsey walked over the cash and handed it to us for the playground.  And I kept asking myself, who does that??? 

I want you to think back to your early twenties and your wedding.  Ask yourself honestly, would you have given away all the cash/checks given to you at your wedding?  I asked myself this question and my honest answer was, no, I wouldn’t have done it.  There were bills to pay, a house to buy or a honeymoon to go on.  At this point in my life, however, that answer would be different, thanks to Beau. 

This should tell you everything you need to know about Kelsey and Matt and the kind of people they are.  I was asking myself repeatedly about “who does this” and then I realized exactly who does this. 

A person with a giving heart.   

A person who has empathy and compassion for those with differing needs. 

A person whose parents have raised them to understand the truly important things in life. 

The type of person I hope my own daughter will turn out to be. 

I started this post with the following quote and will say it again here:
 “Sometimes those who give the most are the ones with the least to spare.” ~Mike Mcintyre

The Place to Play Park project will be one for the books.  It hasn’t been a ton of large donors that have supported the project.  It has been small donations that have added up.  This tiny non-profit, Beau's Beautiful Blessings, with its volunteers are pulling off something the big charities never expected we could do.  It's because of people like Kelsey and Matt. And honestly, that is why it will be so special. 

Help me in thanking Matt and Kelsey for their very selfless act.  Kelsey, my kids love you so much and have such a special bond with you that can’t be explained.  I have always felt this way about you (even before this generous act).  We are lucky to have you in our lives and I know that amazing things lie ahead for you. You guys don’t want recognition or expect anything in return but I feel that it is important for your example to inspire others.   

“True kindness lies within the act of giving without the expectation of receiving anything in return.” 

Thursday, April 20, 2017

Bracelets for Beau

"People who make the world better for other people are some of the best people." ~Kid President

Last Thursday evening Andy and I received an email from Beau's (regular education) 3rd grade teacher at Hansen.  Page (Foss) asked if Andy and I would have time to come to her classroom as Beau's classmates had an idea they wanted to present to us.  All we knew was that the kids were inspired by Beau to do some sort of service project.  We set up an appointment to come to the school at 10 AM on Monday.

When Andy and I walked into the classroom, the students were gathered up front and seated on the floor and their power point type presentation was displayed on the white board.  You could tell they were excited/nervous to share their idea with us.  There were seats set aside for us and seated in chairs near the back of the classroom were Beau and his para Erin, looking excited to watch the presentation (I would later learn he had seen the presentation a time or two).

The presentation was opened by one of the students and about 6-7 of them gradually took turns speaking.  They were holding books that Mrs. Foss used as a part of her curriculum and they had pages marked.  The students read excerpts from them and explained how what they read made them think about certain real life scenarios.  We heard how the books that their teacher was using for their class all had emphasis on being kind to one another, being accepting of others, giving back to your community, etc.  Through all of these readings, these 9 year old third graders all came to one conclusion: the things they had been reading reminded them of Beau and of the inclusive park project. 

I was doing a pretty good job of holding it together but when Beau’s friend Drew got up to speak and a slide came on with a picture of Beau taken at school, smiling big, and on it was a list of all the amazing things about Beau that they loved – the tears started flowing.  I was able to chuckle a little as I heard Beau say “yay” with a little squeal from the back of the room and when we turned back to look he was smiling and pointing at his picture on the slide show. 

One of the little girls in his class had purchased some bracelets before where the money went towards various charities.  These kiddos, on their own, talked and wondered if they could make bracelets and then sell them to raise money for the inclusive playground.  They called their project, Bracelets for Beau.  They explained that they would make the bracelets before school and would stay in during recess so their educational time wouldn’t be affected.  The bracelets would sell for $1 and all the proceeds would go toward the inclusive park. They anxiously looked at Andy and I and wondered if this would be OK for them to do.  They had already pitched the idea and done their presentation to the principal and had gotten approval from administration. 

Their inspiration was their friend.  Their classmate.  Our son. 

I turned to Page and I wanted to confirm – had she had anything to do with their initial idea?  With tears in her eyes, she said no.  It was all the idea of Beau’s classmates/friends.  For her, it was a proud moment in teaching.  From the books she chose for her curriculum to the way she has made inclusion such a huge part of her classroom, she has every right to be proud.  Her leadership and her heart combined with third graders who have equally as much heart is proving to be a winning combination. 

We told those amazing kids that of course they could do this service project and that we would help them in whatever way we could.  Tomorrow night (Friday April 21st) Hansen Elementary will be holding their annual carnival.  They received approval from PTA to set up a table to sell $1 Bracelets for Beau.  This will be the kickoff for their service project and I would encourage anyone that is attending the carnival to stop by their booth and check out what these amazing kiddos are doing. 

I am so proud of these kids.  I know how scary it is to get up in front of an audience (no matter the size) and speak.  They spoke with such ease and conviction.  They completely understood the meaning behind the books they were reading.  Think about how selfless it is for them to give up a little extra time sleeping in the morning or giving up your recess time (especially this time of year) to make bracelets. 

At 9 years old, these kids get it.  I have always been more of an empathetic person but it wasn’t until I was faced with an intellectually disabled child that I realized what was truly important in life and just how selfless I could be.  If it wasn’t for Beau, I never would have started a non-profit and I never would have dreamed of working on an inclusive playground for my community.  

We could learn a lot from these young kids.  They don't see the differences like adults see them.   They knew they loved their friend and they knew they wanted to help build the playground he inspired in whatever way they could.  

Help these kids out.

Help support the Place to Play Park.

Buy Bracelets for Beau for $1 and all of the money goes directly to the park.  If you aren't attending the carnival please contact me and I can connect you with how to get some bracelets. 

More importantly, be inspired by the fact that an amazing group of 3rd grade friends did this because they loved Beau, their classmate and friend and they wanted to give back to their community. 

Just when I think his friends can't impress me any more than they already have, they do something like this.  

"You don't need a cape to be a hero.  You just need to care." ~ Kid President 

Tuesday, February 7, 2017

9 years

Disclaimer as you begin reading - this may get disjointed or I may ramble.  My apologies in advance. 

February 7, 2008.  Beau Hunter Weichers came into this world - 2 weeks late.  I guess it should have been an indication that things might always take a little longer with Beau.  It was a scary delivery.  It all seemed fine and I labored only a short period and delivered but when your baby, your first born, doesn't cry it's the most terrifying and quiet sound you've ever experienced.  I didn't hear the alarms, I vaguely remember the amazing NICU nurses rushing in, I don't remember my doctor stitching me up at all - I just remember repeatedly saying, "why isn't he crying?".  It wouldn't be the last time we thought we had lost our boy. 

Intuition would tell me several times during that first year that something was different about Beau.  I hated the routine check up appointments because Beau was never meeting their stupid milestones on their stupid charts.  He was a year old and couldn't crawl, let alone walk.  I went to PT with him and I would crawl over his body while holding his middle section up to keep him from falling.  He eventually got it and they discharged us from physical therapy. 

July 29, 2009 was the second time we thought we would lose our Beau Beau.  That night was when epilepsy entered our world.  It was the night my poor husband had to talk to the 9-1-1 operator while I held our limp baby.  You can be trained to know what to do in an emergency, as I was, however when your 17 month old child is the patient it throws you into a tailspin.  One thought I've never shared is the conversation I had with God that night.  Maybe I never shared it for fear that people would think I was crazy.  Beau was laying with his head near the hallway wall and as I laid my ear to his mouth and chest I focused on something on that wall - I can't tell you exactly what I saw but my focus was locked on the wall.  In my mind the words I remember were, if Beau doesn't make it, I won't make it either.  I wasn't sure how it would happen, but I knew I couldn't handle any more.  Life was rough at that time and "loss" was a common word for us.  Mentally, I felt done. Thankfully God wasn't going to let Beau's story end there. 

A couple days of testing and we had the diagnosis; partial agenesis of the corpus callosum as well as epilepsy and global developmental delay.  What does that mean for his future?  The answer: we don't know, every child, every brain, is different.  Will he walk, run, talk.....?  The answer: we don't know. 

Oh if I could have foreseen what the months and years that lie ahead would throw at us.  Let's face it  I'm glad I didn't see what was to come.  The first few months after the diagnosis were difficult.  Watching Beau attempt to crawl and seeing his arms just give out at any given moment and him landing flat on his face.  Having to hold him down to give him the horrible liquid phenobarb (Andy and I tasted it - way worse than Fireball by the way).  The therapy appointments, the doctors appointments, the specialists, the IQ testing, the medications, the sleepless nights, waiting for phone calls at work of an emergency with him, trips to the ER for staples/stitches from falling so often - and the list goes on.

What's amazing and something I pride myself on, is that I didn't completely fall apart.  I was certain I would, but I didn't.  I rallied.  I could sit and throw myself a pity party or maybe I could make a difference for other families like ours.  Beau's Beautiful Blessings came about as a way to do something constructive with the reality we were facing.  It was either take that sadness and whine and cry or take that energy and do something positive and beneficial. 

Looking back over the last 9 years we have been on a crazy roller coaster ride.  I was one person before July 29, 2009 and a different person after.  It was so hard.  So, so very hard and some days it still is.  Pill organizers, diapers, a communication device, therapies, drop down tantrums in the middle of a store - ongoing.  I never realized the impact a special needs child could have not only on us as parents but also on family members, community members, classmates and teachers.  He has taught me things you can't learn in any book.

Watching the bond he shares with his younger sister was something my heart needed.  From early on she babbled with Beau and he babbled right back.  They had their own language.  And today she is often the only one that can calm him when he is really upset and she knows his signs and grunts just as well as Andy and I do.  She will talk to you about his diagnosis.  At 4 years old, she is wise beyond her years, and God's other amazing gift to us. Beau has grown so much with the help of Delaney.

We had two different early birthday celebrations this weekend.  At each one, we only lit 1 candle.  In 9 years Beau has never been able to blow out his birthday candles.  This year that all changed and we weren't expecting it.  We waited 9 years and we are proud to say Beau blew out the birthday candle like a champ - no spitting either!  What seems small to others is huge in our world. 

Well Mr. Beau, your momma wants to wish you a very happy birthday.  I have read back through the letters I have written you over the years and they provide me with proof that you have come so far.  You crawled, you walked and you can run. While you aren't able to carry on conversations, I am grateful that you can say some very important words like momma, dada and Dee for Delaney.  While I won't say it has been the easiest 9 years, I'm grateful God chose you for us.  His unique creation is handsome, charming and full of joy for some of life's simplest things (like spending an afternoon at Menards to watch the forklifts or watching the cars go through the car wash or watching garage doors going up and down).  

Thank you for never giving up.  

Thank you for always fighting and trying, even when it would be easy to give up.  

Thank you for changing me into the person I am today.  

Thank you for inspiring people and inspiring ideas - like an inclusive playground :)

Happy 9th Birthday Beau.  I'm so lucky to be your mom. 

(PS - Plan on having a dance party tonight playing only your playlist; Miley Cyrus, Party in the USA, Carly Rae Jepsen, Call Me Maybe and LMFAO, Sexy and I Know It.) 

Monday, January 23, 2017

My Hero

I received an email this morning from Beau's teacher and the school principal.  The students are taking turns doing posters where they describe who their hero is and why. 

This is the picture I was sent.  After I finished crying happy tears, I thought it was another example of just how important inclusion is.  Thank you sweet Adrie.  I know your parents must be so proud of you. 

PS - He's my hero too.  

Tuesday, January 10, 2017

We call it "Beau Time"

If you have spent any time around me or have read about any of our experiences with Hansen Elementary on my Facebook page, you'll know that we just might be in the best school around for Beau.  Their philosophy and attitude on inclusion are second to none. I have heard horror stories about IEP meetings and lack of inclusion from other special needs parents.  I hate to sound like I'm bragging but we've never had that issue and the way Hansen Elementary has gone out of their way to include Beau has been incredible. 

It seems that it's not just families like ours that are noticing how amazing Hansen Elementary School is.  Just this winter, Hansen was honored as a Blue Ribbon School for academic excellence by the U.S. Department of Education.  On top of that the Iowa Department of Education just did a story on Hansen Elementary and how they lead the state in education delivery for students on individualized education plans (IEP's).  I can attest to the fact that the special education department is wonderful and does amazing things.

To further demonstrate their "thinking outside of the box" approach and focus on inclusion, I have to share what Beau's 3rd grade classroom refers to as "Beau Time".  Because of Beau's intellectual disability he spends a majority of his day in his self contained special education room with Mrs. Reed. Beau attends all of the specials with his classmates in Mrs. Foss' 3rd grade classroom; music, art, PE, recess, etc. and also gets to share some time with his classmates first thing in the morning right before going to specials. 

This is where once again, Hansen's team, including his wonderful 3rd grade teacher Mrs. Foss, stepped up and came up with an idea to make Beau's time in her room be more meaningful.  As Mrs. Foss explained, this morning time was a work time for students, however she wanted it to mean something for Beau.  Mrs. Foss met with Beau's speech pathologist to see how or what they could do to use Beau's peers to help him work on his communication goals.  Because Beau is mostly non-verbal they wanted to find a way to use his Nova Chat 7 communication device to interact more with his peers. 

The result of the meeting with Mrs. Foss and Beau's speech pathologist.....

"Beau Time".

Here is an excerpt from an email from Mrs. Foss:  Beau Time is approximately a 15 minute block of time each morning where Beau and his para (Ms. Erin) work with a small group of kids in Beau's class to help Beau learn to use his communication device more independently as well as model some of the learning that Mrs. Reed is working on with Beau.  The students are given a specific day (Monday - Friday) to work with Beau.  They do not like when their day of the week is a day off school!  Beau works on asking and answering questions, colors and numbers with his peers during this time.  The students have been playing a few different games with Beau to help accomplish these goals.  We also try to do a morning meeting game at least once a week where Beau needs to use his device to identify the number on the dice that he rolls.  He has been sitting with his peers during this time and they are assisting him with his device rather than Ms. Erin.

The 3rd grade classroom also has a Breakout EDU session in the afternoon.  Beau doesn't always make it to the classroom in the afternoon because he is often napping at that time (3 strong anti-seizure drugs will make you sleepy!).  One of the afternoons Beau was in Mrs. Foss' room during the breakout EDU session.  These sessions are team building and problem solving sessions for the students and they have a 45 minute time limit to solve the questions.  His classmates were pretty excited to have him in the room that afternoon as a part of their team.  Apparently Beau seemed to realize there was a timer on the board that was counting down and that it must be important.  He quickly decided to become the time keeper.  As Mrs. Foss pointed out, every team member is important in a breakout session. 

The more Beau gets to interact with typically developing children of his own age the more he gets to see them model how to do things, act in a social setting etc. and it's a great benefit to him.  I witness it all the time when he is with his 4 year old sister.  He may be afraid to try something new and doesn't respond well if Andy or I try to help him but if Delaney does it, it's a whole different story.  He puts the fear aside and responds well to her and what she does.  The same is true for him at school.  Having peers who care enough to work with him and help him grow and having a school and team that incorporate that into their daily routine is something every special needs parent dreams of.
Hansen 3rd graders are rock stars when it comes to how they protect and take care of our son - their peer, their classmate, their friend. 
Hansen educators (we love Mrs. Reed), paras (thank goodness for our Ms. Erin) and Principal Estep are rock stars when it comes to the team they have put together for their special education students and their focus on inclusion.
Hansen has (non-special education teachers) like Page Foss (Beau's 3rd grade teacher) and Jill Schulte (Beau's 2nd grade teacher) that have inclusion on the brain and make sure it is an important part of their classroom. Beau's classmates are gaining so much more in terms of life and the real world, about empathy, compassion, patience and working with someone who may be different than them. I have been stopped by some of these students, their parents etc. in public and these kids are 100% impacted by Beau. For somebody who can't talk, that's pretty amazing.
If a school could have a Mayor, Beau Weichers would be the Mayor of Hansen Elementary. 
He is loved by so many, of all grade levels, by staff and by those that pass through and happen to meet him.  It's not uncommon to be out in public and get stopped by people saying hi to Beau - people that neither Andy or I know.  Just last week we were stopped in Menards (Beau's second home) by an employee that said, "Hi Beau".  He didn't recognize Beau from coming in to watch forklifts rather he is a substitute teacher in the district and recognized Beau right away. 
If Beau can have an impact on Hansen Elementary, on his teachers, his peers, etc. than he is doing to them what he has done to me.  We become his vehicle to educate others, to create awareness, to do positive things in your community to give back to those who can't do it themselves.  I see his classmates and other Hansen students participating in ways to raise money for the inclusive playground we are trying to build.  Parents of students are working to raise funds.  Parents of his peers and classmates showed up without hesitation as we were preparing a fundraising video for the park. 
I don't know what the magic is but Hansen Elementary has been magical for our family.  The staff, the students and the parents make our family feel so loved. 
Thank you for your focus on inclusion. Other schools need to take notice and come and learn from the best.
As I say quite often, raising a special needs child takes a village. 
Thank you Hansen (which includes students, staff and families) for being our village.
And for loving (Mayor) Beau.


Thursday, September 29, 2016

Birthday Party Success

On Tuesday September 6th I received a text message from a number I didn't know.  The message was from Megan, a parent of one of Beau's classmates.  The message included a picture of an invitation to a birthday party which was happening that Saturday and it was letting me know that Jasey was wondering if Beau would like to attend her party.  He was the only boy from the class invited and Megan wondered if that would bother him.  Ha!  The part of Beau's brain that loves the ladies is fully functioning.  Now this isn't the first party that Mr. Beau has been invited to.  Often times he has received an invite when the entire class is invited to attend the party.  Timing has never been right, I didn't know the children or their parents for that matter and you never can be certain with Beau if he will have fun at something like that or break down and shut down. 

I recognized the little girl in the picture and remembered reading a letter Jasey had written us last year when classmates wrote letters to Andy and I for school conferences.  I sent a quick message to Beau's para to confirm that this little girl was in fact one of Beau's friends.  She confirmed that Jasey was one of "Beau's girls". 

I decided to step out of the comfort zone and see what would happen if I took Beau to the party.  We bought a gift, discussed the party for the couple days leading up to the event and talked with him about what kids would be doing at the indoor inflatables park. 

Saturday morning came and Beau was ready to go and jump!  We got to the party location and as I tried to get Beau out of the vehicle, he signed "all done" and shook his head "no".  I told him that it would be fun and I walked (pushed) him into the building. 

I was excited to see that the family had rented out the entire location so no other kids would be in there.  This is just one of the many things you think of when you know that certain things can stress your child or become a safety issue for him when his balance and knowledge of what is safe/not safe are not the same as a typical child. 

He quickly spotted a basketball game so any anxiety he was having disappeared.  He started shooting hoops and was having fun just shooting baskets with me.  Not everyone had arrived yet but I was worried that maybe this is how the party would go; Beau would play by himself.  It wouldn't bother him because he was in his own little basketball world, but it would sadden me to see him playing by himself. 

I should have known it wouldn't take long for the scene to change. 

It didn't take long before 2 of "Beau's girls" really stepped up and made Beau have one of the best mornings imaginable.  This is what I witnessed.


I watched from a distance as these sweet 8 year old girls, Marie and Adrie, sacrificed their own play time with other girl friends to play 100% with Beau.  Keep in mind that because of Beau's developmental level, he likes toys that are typically played with by younger children.  These young ladies went right along with it and played with those toys and entertained Beau.  I was there, but they didn't act like I was there.  They weren't doing this to help me or to "do the right thing", they were playing with Beau because they genuinely wanted to play with him and they genuinely cared about him as a friend.

The group even got a surprise visit from their teacher from 2nd grade; Mrs. Schulte.  When the old crew is back together you have to take a picture!!

From there Beau convinced the girls they should ride bikes (bikes that, once again were meant for smaller kids but they still rode because Beau could ride them) and he even made them park in a "garage" area. 

And then there were the trampolines......If you know Beau, you know his balance isn't the greatest.  Watching him play on the trampoline with his friends and watching him manage to stay upright (most of the time) was pretty entertaining.  He looked a bit like a little drunk man but I tell you what, he LOVED every minute of it!!!
Basketball and Jumping - what a perfect combination!

Jasey showing she can tackle with the best of them :)

One falls down, we all fall down!

One of my favorite parts of the day would have to be when they were playing in the small bouncy house.  One section of the house had soft pegs as well as hand straps to assist you in pulling yourself up to the slide that was connected to it.  It quickly became evident that Beau lacked the coordination to pull himself up onto the top of the slide.  In the picture below, you can see Marie pulling Beau's arms as Adrie is below pushing Beau's legs up.  Despite their strength and excellent effort, they couldn't get him up.  Adults weren't supposed to get into the houses, but I went in and helped lift him up so he could go down the slide. 

It was a little later on in the morning when Marie came running over to Adrie after spotting a step type cushion she had found.  She quickly found a second one and told us what her plan was.  She said they would take the steps and put them in the small bouncy house so that Beau could climb up to get to the top of the slide.  As my 4 year old would say, "Teamwork makes the dream work".  At this point my heart was melting.   The pictures speak for themselves....

Ecclesiastes 4:10 - If either of them falls down, one can help the other up.  But pity anyone who falls and has no one to help them up. 

The fun continued with more basketball and running around!

Next up it was time for cupcakes.  I had to laugh because if you've never eaten with Beau, it's an experience - a very messy experience.  I was wiping off his hands and I said something about how messy he was with the frosting and Marie didn't miss a beat and said, "You should see him when he eats at school!".  I started laughing so hard because it's so true.  He just looked at her and smiled (with blue frosting on his teeth). 

I ran downstairs while the kids were preparing to watch Jasey open presents and when I came back up I found that they had helped Beau get on to the picnic table to sit and watch the presents being opened. 

This picture and his expression sum up a lot about his morning.

Here he is saying "truck" to Marie.  He thought every present would naturally be a truck. 

I was never really certain how school would be for Beau.  Every year I just become more and more amazed.  God blessed us with Hansen Elementary and his team, and He certainly blessed us with some wonderful classmates for Beau.  There is nothing wrong with having lots of female friends.  These young ladies will be fierce in protecting our son and no doubt will make him feel loved throughout his school days.  I cried (happy tears) on the way home from the party and looked at these pictures over and over again and just smiled.  Thank you sweet girls - for loving my sweet boy, being his friend and making him feel like a king.