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. 

School Registration Time and the Unlikely Request....

It's hard to believe that summer is coming to an end and that school will be starting in just a few weeks.  Today was registration for Beau.  It came with some anxiety for me.  Beau's special education teacher since Kindergarten has moved to another school within the district and I wanted to find out more about his new teacher.  In addition, I was anxious about who is regular 3rd grade teacher would be. 

I had heard stories last year from Beau's para Ms. Erin about a teacher that Beau saw everyday in the hall and had made a connection with.  I didn't remember her name or what grade she taught however I knew they had formed a connection.  About 2 weeks ago Beau and I were walking into Wal-Mart when a woman yelled "Hi Beau" and walked over to us.  He lit up and said "hi, hi, hi" and smiled so big.  These occurrences aren't rare in our world.  If you ever take Beau anywhere expect that someone will come up and say, "Hi Beau", "How are you Beau", etc.  We rarely know who these people are.  I'm fairly certain he should run for mayor or maybe even president - he does love kissing babies!  I asked this woman if she knew Beau from school and she said yes.  She said that her name was Ms. Foss, a 3rd grade teacher at his school.  She explained to me that she and Beau had formed a friendship last year in the hall when he would pass her classroom.  From what I understand, and from Beau's reaction to her, their bond only increased as the year went on.  My prayer was that the school had noticed this and that Beau would end up in her classroom. 

When I checked in today at the school I was delighted to see that Beau was assigned to be in Ms. Foss' 3rd grade classroom.  When I spotted the principal I asked her about how it all came about.  I wasn't sure if they had purposefully introduced him to her in preparation for 3rd grade or if it was just random that it happened.  She told me that it was completely random that he took a liking to Ms. Foss.  He had to pass her classroom during the day and she was always so kind to him and they made a connection.  It was obvious to Ms. Estep what needed to happen.  It was also important to Ms. Foss as she made a request as well that Beau be in her classroom.

Ms. Estep and I continued our conversation about Beau's new special education teacher.  She told us her name is Katie and that she really thinks Beau will respond well to her.  Katie will be calling us to set up a transition meeting along with Beau's former teacher to make the changeover as smooth as possible.  I felt really good about her background and look forward to meeting her in the weeks ahead. 

I thought the conversation with the principal was coming to an end when Ms. Estep shared one more story with me.  I should've known I wasn't going to make it out of that school without crying (joyful tears) - it seems to happen quite often when I meet with staff. 

Ms. Estep had received a call from a parent this summer making a request.  I don't know the parents name nor do I know the name of their child.  This parent called and said they wanted to request that their child be in a particular classroom.  The principal explained that they can't choose which teacher their child gets, however that wasn't what the parent was requesting.  This parent called to specifically request that their child be put in the same 3rd grade classroom as Beau Weichers was assigned to (whoever the teacher may be).

Cue the tears - for both me and the principal. 

As you can guess the principal did the right thing and an exception was made and this child was assigned to the same classroom as Beau. 

Here's what that moment felt like to me.  It felt like my child had an impact.  Maybe they have been in the same class before and they wanted to continue being a buddy for Beau.  Maybe the child hasn't had a class with Beau and their parent felt it was an opportunity for their child to be around someone different and it would provide a life lesson for them.  No matter what the reason, kudos to that parent that picked up the phone and asked to make it happen.  Kudos to the school for making it happen.  Kudos to Ms. Estep for sharing the story with me.

I never imagined Beau would get so lucky in where he went to elementary school.  I never imagined he would still be with his para (5 years strong).  I never imagined he would have a best buddy in his bus driver.  I never imagined he would have such amazing school nursing staff.  I never imagined he would have such a great special education teacher and such inclusive minded, amazing regular classroom teachers.  From the school secretary who helps out with Beau so Ms. Erin can eat her lunch, to the lunch lady that always gave Beau extra ranch dressing, to the janitor that makes a point to say hello to Beau, to the principal, nurses, teachers, paras, bus drivers, etc.; you name it, Hansen has the magic combination. 

I praise the school for knowing what was best for Beau and making those decisions when I didn't even realize it was going on.  They want what we want; what is best for Beau.  I just can't give enough praise to Hansen Elementary and the staff and students.  It takes a village to raise a special child and I'm so glad they are a part of our village. 

And to the anonymous parent that made the request for your child to be in Beau Weichers classroom - thank you.  I don't know if you'll ever know how much that means.  And I promise you, your child will learn things from Beau that books and teachers can't teach them.  Thank you for doing your part to raise a compassionate and understanding human being. 

 

17 Letters

As parents of a child with special needs, education can be a big struggle, fear or even a fight.  I feel incredibly lucky that we haven't had to fight or struggle.  I have heard horror stories from parents about their IEP meetings and having to fight with their school district to get what they need for their child.  To say we have been blessed when it's come to Beau's schools, teachers and para would be an understatement. 

It started with Castle Hill School and Ms. Tyna and then it was Hansen Elementary and Mrs. Hutchison.  Beau started at Hansen in Kindergarten and was placed in a self contained special education classroom with Mrs. Hutchison and his para, Erin (who was also with him at Castle Hill).  Throughout his time at Hansen, his more structured educational learning has been done in Mrs. Hutchison's room and then his socialization and integration has been in his assigned kindergarten class, first grade class and now second grade classroom. 

We don't generally get to know the classroom teacher that well because a lot of Beau's learning and goals are all through his IEP and his typical classroom doesn't have much to do with that.  It doesn't bother us as we know that a majority of his time is spent with his great special education teacher.  We attend not only an IEP meeting but we attend the typical conference any other parent would attend. It's always pretty much the same.  They tell us he has fun with the kids when he comes in for specials or at recess and that they enjoy having him visit their room.   However this year it's different.  It seems from day one there's been a connection with his second grade teacher - for all of us, not just Beau. 

Mrs. Schulte has been the difference. 

Mrs. Schulte's class has been the difference.

Children learn by example.  Mrs. Schulte has a combination of compassion, love for her job and a knowledge of inclusion and how important it is.  Most days, my heart tells me that while it's important for Beau to be in that classroom participating and playing at recess, it's even MORE important for his typical peers to have him around them. 

Andy and I attended his conference this fall with Mrs. Schulte and we expected it would be like any other conference we had been to. We were wrong.

Mrs. Schulte began talking about Beau and his effect on her classroom and on her students.

And she began to cry.

She explained to us that she could verbally tell us how important it was for Beau to be in her room and how much his classmates loved him and watched out for him but she didn't figure that would cut it. 

So she handed us a folder.

Inside the folder were 17 handwritten notes from his second grade classmates.  Seventeen beautiful, handwritten notes from Beau's friends.  As Andy and I sat there reading them, with tears in our eyes, it was evident to us that these children really knew Beau.  Some of my favorite lines (I corrected the spelling to make it a little easier to read).....

"Beau always has a smile on his face."

"Beau makes me happy when he learns stuff."

"Beau is a caring friend."

"I like to help him."

"Beau makes me happy when he cheers when I make a basket even when I miss."

"He makes me proud because he is always a caring friend."

".....and that's why Beau is awesome!"

".....and who knew he could be like this.  We are so amazed!"

Here is a sampling of those letters....

Most of these children have been together the last 3 years and like any relationship, they get stronger with time.  I remember years ago thinking, who's going to protect my Beau Beau from the mean bullies at school?  He's nonverbal, how will I ever know if someone has done something to harm him?  He wears diapers, kids will be mean, etc.  I've witnessed it myself, I have heard it from his para Ms. Erin, I've heard it from the teachers; these kids are looking out for Beau.  I know people won't always be nice but I have faith in these kids.  It is clear to me that many of their parents have done a good job talking about those who may have different abilities and how to treat them.  Hansen Elementary should be the school other schools aspire to be like.  These children are learning the beauty of being different and accepting those who aren't just like them.

They are learning that our sweet boy is a special person to know. 

He finds joy in the simplest of things. 

He has that toothy smile on his face most all the time.

He cheers for you even when you miss the shot.

He loves unconditionally. 

I guess we could all learn a lot from Beau. 

I don't know that Mrs. Schulte will ever fully grasp what she did for us that day.  It may have seemed like a simple gesture to her but it went far beyond that for our family. 

I made sure that I wrote a letter to the superintendent of the school district with a copy to the principal.  When someone does something so important, it is imperative that they get recognized or acknowledged.  How she came up with such an idea I don't know.  I just know that it made my husband and I feel really good and like Beau was truly a part of his second grade class. 

And to those of you who may be reading this and happen to be teachers; think outside the box like Mrs. Schulte did and strive to have an impact like she is having on her students and their families. 

 

 

"Inclusion elevates all" - Elaine Hall

The World Needs More Eliza's....

Something amazing happened 2 months ago (and I'm just now getting around to blogging about it).  I got a random Facebook message from the mother of one of Beau's classmates.  To fully understand how we met and how big this was, I need to give a little back story.

We had met a few months ago at Field Day at school.  I had stayed at the back of the gym, hoping Beau wouldn't notice me at first so that I could watch him and see how he interacted naturally with his classmates.  The first thing I noticed was a little girl that was walking alongside of him, holding his hand, instructing him on how to participate and sitting down beside him and talking with him.  Talking to the little boy that couldn't talk back to her.  I couldn't believe what I was witnessing.  His special education teacher wasn't even having to intervene to help Beau.  This little girl was taking care of my boy. 

After watching for about 20 minutes, I made my presence known and spoke with Andrea, Beau's special education teacher, as well as Beau's regular first grade teacher.  They both spoke highly of this little girl with the big heart.  Her name is Eliza they said.  Then they introduced me to her mother, Jenelle. 

Jenelle was so wonderful to talk to.  She said that Eliza spoke often of Beau.  Since Beau is non-verbal I don't often hear about his classmates at school.  I learned that Eliza has 2 sisters and 2 brothers and sadly had lost another brother, 2 year old Caleb, in December after complications from a routine tonsillectomy.  I remember thinking, how is this woman even standing here talking to me?  Her strength and her heart were amazing.  I quickly realized where Eliza got her loving spirit from.

After that day, I didn't really have much contact with Jenelle except for becoming friends on Facebook.  It wasn't until school was drawing near that we reconnected.  Our family had attended back pack night at school and the teachers had arranged it so that we could bring Beau about 15 minutes earlier than the other families because of the stress the night had caused him the previous year.  As always, his wonderful teachers and staff were thinking of what would be best for Beau.  As a result of going early, we didn't get to see too many families or too many of his classmates.  We were excited to learn that Eliza would be in Beau's 2nd grade class with him (when he wasn't attending his special education room).  I knew he would have an advocate with him and that made my heart happy.

This brings me back to the message I received that Saturday morning, after back pack night.  Jenelle messaged me asking if there was any possible way we could get the kids together over the weekend before school started on Monday.  She mentioned how bummed Eliza had been when she hadn't seen Beau at back pack night. 

I couldn't believe it.  Somebody, Beau's age, a typical little girl, wanted to come and play with my Beau.  Really? 

I was with the kids outside when Jenelle arrived with Eliza and her sister Lydia.  Beau was on his prized digger in the sandbox and I wish I could explain the look on his face when they pulled up, parked and Eliza stepped out of the car. 

His eyes got huge.  His jaw dropped.  He did the Beau squeal and he stepped off his digger and signed for Eliza to sit.  She quickly obliged and for anyone who truly knows Beau, he loves to "direct" play and she did everything he asked.  They played wonderfully together in the sandbox and Delaney and Lydia played together as well.  I watched while talking with Jenelle and was amazed at how Eliza knew exactly what Beau was "saying" to her.  She could list his likes and dislikes and she knew so much about Beau.

The kids continued to play and Eliza continued to interact with Beau, smile with Beau, laugh with Beau and they played like two 7 year old kids should play.  She knew Beau loved basketball; she grabbed a ball and the hoop and they played basketball.  She knew Beau loved watching gymnastics; she did a headstand, a cartwheel and more.  She knew he loved cars and trucks; she played cars and trucks with him. 

My son didn't stop smiling the entire hour and a half they were there. 

I'd never experienced anything like it. 

Not long after Jenelle, Eliza and Lydia left I received a text message from Jenelle.  She was relaying to me what Eliza had said to her after leaving our house.  "Mom, I think I'm going to marry Beau."  She had said it in the most matter of fact way.  My response to Jenelle talked about how much it made me smile to know that somebody his own age loves him 100% for him and doesn't care about the diagnosis and the difference between them. 

Out of curiosity, Jenelle decided to ask Eliza if she thinks that Beau is different. 

Her reaction and answer; priceless.

She looked at her mother, confused at such a question and very simply said, "No." When asked what she thinks of Beau, she smiled and said, "He's good.  I like him.  I think I might marry him."

A genuine friend.  A pure heart.  A kind soul.  One simple response to the question, do you think that Beau is different? "No."

That night after the kids had gone to sleep, the magnitude of the events of the day hit me hard.  This was the first "friend" Beau had over to play with him.  Never has any child wanted to come over and play with Beau.  I get it and I expect it.  The older he gets, the wider the gap gets between his classmates and himself.  He can't communicate like everyone else, he wears diapers and he drools a lot.  But I laid there that night and felt hope. 

And I cried my eyes out. 

Why can't more kids be like Eliza?  She looks past the obvious differences and looks within - at Beau's heart and soul.  She genuinely cares for Beau and he absolutely lights up when she's around. 

Sadly, Eliza and her family will be moving after the first of the year.  Her dad has received a job promotion (which is good news) but sadly that means that their family will be moving away.  Finally Beau has a friend and an advocate and now she will be leaving.  Her mother said that when they told the children, Eliza burst into tears and said, "What about Beau?"

My heart hurts thinking that this beautiful family is leaving; they have endured so much over the past year.  Eliza may never fully comprehend how much she has affected our lives.  She's been a protector to Beau at school, a motherly figure, she befriended Beau, plays with Beau, talks to Beau and above all else, she has loved him unconditionally.  I hope in the few short months she remains here in town, she will help other students find the same understanding and joy in being a friend to Beau. 

Wouldn't the world be a better place if we had more Eliza's?

Yes.  Yes it would.

A Journal in the Attic

While cleaning out our attic last weekend, I came across an old journal in one of the boxes.  The journal had only one entry in it and it was dated January 2, 2009.  Journals are a very private thing and should only be for the author to read, but this is one entry I am willing to share.  This falls into the period of my life before Beau's diagnosis:

Friday January 2, 2009,

I'm sitting here writing as Beau is taking his bath.  It's amazing how fast he's growing.  I can't believe that next month he'll be one already - amazing!  I worry because he's delayed with a lot.  He won't hold his own bottle, he can't crawl, he babbles a lot but no consistent mama or dada.  I'm just scared because I see all of these babies around us and they're so much more advanced than Beau.  I feel I'm not being a good mom - that I should be working with him more to help him become more advanced.  I feel like I need an instructor to tell me how.

There are times when I think back and I remember those moments during his first 17 months before he was diagnosed.  As a first time parent I wasn't really sure, at the time, if I just didn't know what I was doing or if there was something genuinely wrong.  I guess all along I had a pretty good gut feeling but when the doctors couldn't give me an answer it was just pushed off as "he's a boy - boy's develop slower than girls"....."he's a chunky boy, that's why he can't roll over, sit up, crawl..."  

Six years later, another child, and I now know how much different raising a typically developing child can be.  We have both ends of the spectrum in our house.  There are rewarding moments with both children and it has given me such a unique perspective and different outlook on life.  Finding this journal took me back to a period in my life that in some ways was perplexing and in other ways was bliss.  At that time I may have been concerned about his development, but I didn't have the fear of seizures; I didn't know that 6 years later he still wouldn't be talking or that he'd still be in diapers. 

Today at least we know what we're dealing with and we are stronger than we ever imagined.  Even better, Beau eventually did those things he wasn't doing when I wrote that journal entry; he crawled, he held his own cup, he consistently says mama and dada (music to our ears) he walks and he can even run (albeit it's a little like a drunk person) but nonetheless it's a run! Sweet Beau has been through so much since January 2, 2009 and his strength amazes me - he is my hero.

"I believe that to nurture my soul and fulfill my soul's purpose, I must learn from every event in my life, I must come to realize that every experience has within it a seed of tremendous gift."

Author: unknown                

"Why is Beau, Beau?"

Earlier this month, we spent May 6th through May 8th inpatient at the University of Iowa Children's Hospital for an inpatient video EEG.  For those of you that have experienced these, they don't seem to get any easier as your child gets older.  You're stuck in a 10 x 10 room and tethered to a long cable. This test was necessary as Beau had been having some strange episodes in which his right leg gives out on him and he is unable to use it for approximately 20-30 minutes.  The leg then remains weak for the remainder of the day.  These episodes were becoming more frequent, so Dr. Joshi decided it would be good to get him in to see if they could catch one on video EEG. 

The hook-up was stressful as it always is.  Beau hates being held down for procedures and then you add into it the strong odor of the glue and the loud noise of the air gun.  We had the added annoyance of the EEG manager who decided to cram herself into our small room with Andy, myself and the EEG tech.  She clearly had not even peaked at his chart because she thought he could talk and asked him repeated questions.  Andy and I were busy focusing on Beau so we didn't say anything until Andy got Beau to calm down enough that he wasn't screaming.  It was then that I told her to stop asking him questions, he wasn't going to answer; he's non-verbal! 

Once the hook up was over Beau and I bonded for the next couple days and played lots of Nerf basketball.  I'm sure the technician loved having the basketball hoop hanging near the camera.  That ball came right for that camera several times :)  Luckily there was construction work going on right outside our window so it provided some amazing entertainment for Beau.

On Wednesday the EEG tech informed us she could unhook him from the wall in our room and re-connect him to a unit in the playroom which also had a video camera.  It was there that Beau enjoyed his time with a sweet volunteer who happens to be a nursing student at the college.  She played grocery store with him and got in the playhouse with him which made his morning! 

Dr. Joshi stopped in to speak with me briefly on Wednesday stating that she would keep him one more night and then she wanted to do a spinal tap on him.  She showed me 3 pictures from 3 different inpatient EEG's.  One picture was from the current visit.  When we held it next to his previous EEG's it showed the most improved EEG.  Her comment to me was that because there aren't any structural abnormalities that she knows of near the part of the brain that controls verbal communication, she is trying to determine why Beau can't talk.  To be honest, I accepted long ago that Beau won't ever talk, but I guess it is puzzling her because he EEG is looking so good and the epilepsy is under fairly good control with the 3 medications he is on.  She feels like with that under control, he should be gaining verbally.  She said the spinal tap would indicate if there was any chemical problems in the CSF (cerebrospinal fluid).  Since there isn't a structural problem, her next step was to look at the chemicals in the brain. 

 

 

 

The following day the sedation team got Beau put to sleep and the spinal tap was done.  They removed 6 vials of CSF from the little guy.  We were told it would take 2 weeks to get results back.  Beau woke up a few hours later and they gave him a bunch of Mt. Dew to try to keep him from getting a spinal headache.  This little man normally only drinks water and nothing else because he doesn't really like anything else.  He was so thirsty because he had been NPO for so long that he drank the Mt. Dew.  He was flying off the walls on the way home!  It was just a joy to see him smiling and happy - even if he was highly caffeinated lol!

At the end of last week Dr. Joshi called me with the results and her overall impression.  First off she still doesn't know what the episodes are with the right leg.  She didn't catch one on video while we were there.  He had an episode our first night there but we weren't able to get him to try and walk so she had no video proof of what was happening.  We will now have to catch one on our phone when they happen and send it to her.  According to the doctor, this is the best EEG Beau has ever had.  To us, this explains why he continues to grow in school - it may be small growth but in our world it's huge because it's growth and not regression!  This is when Dr. Joshi said....

"Why is Beau, Beau?"  She is struggling to understand, why, if the EEG is so improved and there are no other structural issues beyond the one we know about, why does he have epilepsy and why can't he talk?  I could tell that she is trying so hard to figure out what we aren't seeing.  She's trying to put this puzzle together and there are pieces missing so we can't see a clear picture and it doesn't allow us to develop a long term plan of care. 

The next step is to see her for a visit next month and she will run a GeneDX panel on Beau.  This will look at Beau's own genetic make-up.  I was tested after his diagnosis for any genetic issues and none were ever found on me.  We went through the testing not only for Beau but to determine if we would ever have more children of our own.  This blood test will look for 50 different genes according to Dr. Joshi.  This may give her an explanation for his epilepsy as well as his inability to speak - although he can speak about 10 words and can vocalize noises, grunts, etc.  This test will take approximately 4 months for results.  Dr. Joshi told me that if nothing shows up on this test she is really stumped.  At that time she wants us to see a neurologist friend of hers that is at the Mayo Clinic in Rochester.  She thinks that maybe a fresh set of eyes and mind, might yield some new ideas on what might be going on with Beau. 

I did ask Dr. Joshi about the possibility of Beau having some form of autism.  In her mind she doesn't feel that he does at all.  She is going to have him re-evaluated at the Center for Disability and Development there on campus.  He was evaluated when he was 2 so we will have him re-evaluated.  Nobody had ever mentioned autism but sometimes he does things that have made me question it but after talking with her that will be taken out of the equation for now. 

Overall, here are my thoughts.  I accepted long ago that my son isn't going to talk.  He says 2 very important words and that is really all that matters - he can say "mama" and he can say "dada".  He can sign numerous other words and he has the most expressive eyes, amazing smile, glorious squeal of joy, beautiful freckles that cover his cheeks and he gives the BEST hugs ever.  Call me a pessimist, but I call myself a realist.  Don't get me wrong, if he starts talking one day I'd love to be proven wrong!  Dr. Joshi's discussion about looking for what else must be going has made me think.

"Why is Beau, Beau?"

If answers can be found that will help us with his plan of care, fabulous!  If no answers are found, it's OK because I realized a long time ago why Beau is Beau.

Beau is Beau because God made him and created him so beautifully and so perfect.  Beau is Beau because God needed a special messenger so that adults and children alike could learn from his uniqueness and charm and become understanding of so many others with differences.  Beau is Beau so that other children like him can benefit from his non-profit.

I will keep everyone posted in the coming months and share any information or results we might receive.