Letters of Love from Mother to Son....

I'm not sure where I came up with the idea, but when I found out I was pregnant with Beau, in 2007, I started to write letters to him.  I wrote these letters at pivotal points throughout my pregnancy and beyond and put them with pictures (of me and my pregnant belly) from that time period in a scrapbook for him to enjoy when he got older.  I figured that he would love to look back at it when he had his own children.  We didn't know of Beau's brain abnormality when I was pregnant; he wasn't diagnosed until he was almost 18 months old.  I wrote to him like any mother would write to her child sharing my joy for his presence and all of the wonderful things I hoped for him and his future. This came to the forefront of my mind very recently when I was given an article from a family member.  They'd read it in the June/July 2011 National Right to Life News.  The title of the article was Sarah Palin: "Every Child is Created Special, with Awesome Purpose and Amazing Potential".  I won't talk politics on this blog - so please set aside your political views or personal views of Sarah Palin and take a moment to read the article.  If you have a child with special needs you'll "get it" and you'll appreciate the letter.  It made me think so much about my letters to Beau.  Her is a link to that article. http://www.nationalrighttolifenews.org/NewsOnline/June-July2011/SarahPalinEveryChild.html In all of the Palin emails that were recently released they came across an email she wrote in April of 2008, just a few days before the arrival of her son Trig, who was born with Down Syndrome.  She wrote it to their family and friends as if it was God writing a letter to their family about the journey they were about to embark upon.

All of that explains to you why I chose to blog about my letters of love to Beau.  It shows a little about me, my innermost feelings and pure love for my son.  I seem to do better with expressing things in writing than I do talking sometimes.  I'd like to share an excerpt from a letter I wrote to Beau at the end of the first trimester.

........Within just seconds of Dr. Breitkreuz placing the doppler on my abdomen we heard the most amazing sound we've ever heard - your heartbeat! I knew the second he had found it and immediately looked over at your daddy sitting next to me.  Your heart was beating so fast and it was music to our ears.  When I looked at your daddy his smile went from ear to ear and mine had to have looked the same.  I didn't know whether to laugh with excitement or cry at how precious the sound was.

.........Boy or girl, we'll be excited either way, we just want you healthy.......Your daddy and I love you more than you'll ever know and we haven't even met you yet.

The letters are very similar throughout.  I talk about the ultrasound results and how perfect everything looked and our joy and excitement at our precious gift from God.  I looked forward to writing those letters each month to Beau.  After the major seizure he had in July of 2009, I wrote Beau another letter.  I wrote it in August of 2009.  I pulled it out just recently and I broke down reading it and as I share a bit of the letter with you, it brings me back to that moment and brings back some tears with it.  I can't share the letter in it's entirety, as it was written to only to Beau, but I want to share a piece of it.  Here goes....
My dearest baby Beau,

I've struggled this month to come up with the proper words to write to you.  My heart has been broken so many times this month.  You've reached another milestone in turning 18 months old this month.  We almost had to deal with you not being here to celebrate that milestone. 

I explain to him all that had happened and I go on to say....

After a stay at the University of Iowa, a return home and a follow up seizure, your life has become a medical drama.  Your father and I would do whatever we could to take away any pain you've had or are having.  It's so hard because you can't talk to us and tell us what's going on.  After numerous tests it was discovered that you have partial agenesis of the corpus callosum, an absent posterior pituitary bright, global developmental delay and epilepsy.  It's a mouthful isn't it?

Later in the letter....

You have this way of charming people so quickly.  It seems that one look from those beautiful big blue eyes is all it takes.  I don't think I'll ever forget how you blew kisses to all of the medical students when they lined up in your room in Iowa City.  It was completely adorable and everyone just melted when you did it; certainly not a shy little boy.

I closed the letter with....

After all that has happened this last month, you need to know that so many people are praying for you and so many people love you.  You are a true blessing and miracle from God and you have been since day one..........You are going to do great and your father and I will do whatever it takes to help you......God and His angels have been close by you lately and I know that they are protecting you.  It wasn't your time to leave us and we thank God every day for that. 

Since his diagnosis, I've often thought about how sad I feel that maybe he won't ever understand the letters or ever be able to read them on his own.  I know that it seems like such a silly thing to be concerned about in the grand scheme of things but nonetheless, I have thought about it.  I've tried to tell myself that when he gets older, he will understand some of those words that I wrote to him.  If nothing else he'll hear the words of love.  In a letter I wrote him in May of 2010 after another really bad seizure I address this concern......

You amaze me every day with your strength and determination.  One day, I hope that you are able to read these letters I have written you and know how much love I have for you and how much love your family has for you.  You are an inspiration for so many and you're too young to even know that you have impacted so many lives......Your passion for life is contagious and even though you're only 3 feet tall, I look up to you every day.......I love the little man you are becoming and I can't stress enough how proud of you I am.  All my love, Mommy.

I still feel that way today.  Proud, blessed and inspired by a small little man, I call my Beau Beau. 

"You've developed the strength of a draft horse while holding onto the delicacy of a daffodil ... you are the mother, advocate and protector of a child with a disability." -Lori Borgman

Learning Tools....

A few weeks ago a good friend (a fellow ACC family) asked me what we used for teaching toys with Beau.  Sometimes it's nice to see what other people are using and compare notes.  I'm interested in knowing what other families use with their ACC children so I'm hoping maybe this will help others.

The 2 board books shown in the pictures above have been used and used and used by Mr. Beau.  He absolutely loves these books and has really learned from them.  As you can see from the cover they are offered through Scholastic and we have a family member that is a teacher and was able to order them for us.  These are the only 2 books that these particular authors have out. One title is My First Signs and the other is What Do You See.  What's worked good for Beau is that there are real pictures of real people, cartoon characters and real children doing the sign. Beau seems to understand learning signs/words when using real life pictures.  The authors are Michelle Anthony and Reyna Lindert and you can find more about them at www.signingsmart.com and you can find other products there as well.  Below are the flash cards that we ordered from the same company and these are pretty nice cards and fairly inexpensive as well. They are on a ring and have different themes to each pack.  They show an adult and a child doing the sign.

  Some other items that have worked good for Beau are ideas that came from watching his therapists do their work with him.  Below are some items that I was fortunate enough to find at garage sales - items that I have seen his teachers and therapists use. 

Above are 2 magnetic books that I found brand new, never opened at a garage sale and paid $5 for the pair - one is a Zoo book and the other is a Farm book.  Beau's speech therapist uses these at EDI.  The one she uses is actually a classification board and you place certain magnets in certain sections of the board.  For example, the apple magnet goes in the food section, the socks magnets goes in the clothing section.  Each magnetic board that I got includes a small book that describes each of the magnets, plus lots of different magnets.  What we often do is put all the magnets to the side where he can't see them and I pick up two different magnets.  I'll ask Beau, "Which one is the cow?".  I will also sign the word I am asking.  If he tries to pick the wrong animal, I hold it tight and force him to look at the other animal and pick it up and place it on the board.  Then we go over the sign for that word once again and I try to manipulate his hands to do the sign.  We continue the process with 2 different magnets.  

The picture above is another item from a garage sale - a FREE item.  This peg board is used for a couple things.  You can use it for colors - "Pick up the BLUE peg, Beau."  You can then work on occupational therapy by using the small motor skills to stack the pegs on top of each other or to just place them in the slots.  Below are some other toys that are great educational and developmental toys that have worked well for Beau. 



 This board is made by Melissa and Doug and works good for small motor skills, colors and counting.  Beau's just getting into this as far as colors and numbers are concerned, but we've used it for stacking and small motor skills.

Melissa and Doug toys are just plain GREAT!  These are just a few of the puzzles that Beau has.  The noise ones are great.  There are so many ways to learn using the puzzles.  These puzzles are good because they have the same picture below the puzzle piece making it easier to put it in the right spot.  Again, small motor skills are used, especially using the pincer grasp with the small pegs on the top 2 puzzles.  The bigger knob puzzle worked really well early on for Beau because it allowed him an easier way to lift the pieces since he didn't do well with manipulating smaller pegs.  You can learn colors, numbers, shapes, recognizing animals, instruments, vehicles, etc.  We have a large collection of Melissa and Doug puzzles.

Fisher Price also makes some great toys that double as learning toys.  Below are the gumball machine, the piggy bank and the block giraffe, shape sorter cookie jar, and shape sorter box.  These are pretty self explanatory.  Shape sorting is great for small motor skills, the gumball machine worked great for cause and effect.  It took him quite some time to figure out that you had to pull the lever to get the gumball to release from the machine. The piggy bank was a huge challenge for Beau when he first tried it 1 1/2 years ago.  I remember how he hated this toy and hated it because it was so hard for him.  Practice, practice and more practice, and now he's a pro at it! 



 Below is another wonderful Melissa and Doug toy.  These are blocks designed to be strung onto a string.  Because the string is too flimsy and difficult for Beau to use, we use a pipe cleaner instead.  It's firmer and gives him a better opportunity at success.  Don't get me wrong, it's still very difficult but he is doing better than expected.  We just tie a knot at one end of the pipe cleaner and then he holds the pipe cleaner in one hand and holds the block in his other hand. 

Below are pop beads and they are good for colors, counting and small motor skills.

Below are counting cans I bought at our local university book store.  The university is a big teaching college so the book store carries tons of teaching tools and developmental toys.  These are made by Learning Resources.  These cans are great and Beau loves them!

Above is a sample of one of the cans.  It's great for counting, sorting, colors, item recognition, etc.  This was a more expensive toy at $42.  This toy gets kept up in the closet and only gets used when we are working on learning.

Above are some more items I purchased at University Book and Supply.  Each box of flash cards was only $2.99 each.  They show the picture on one side and the actual word on the other side.  They have it in English and Spanish.  We've been working on cards with Beau in different ways.  We started with holding out 2 cards and asking him to pick up the card that has the cup on it.  He would have to pick up the picture of the cup and hand it to me.  The next phase after a few weeks of the previous phase was saying, "what do we drink out of?".  There are many different types of cards and you can do lots of things with them. Beau's speech therapist also has ones that show the complete color on one side of the card and the word of the color on the other.  The cards I have are made by Trend Enterprises and their website is www.trendenterprises.com . 

HiHo Cherry-O is a gift that an early developmental intervention educator gave Beau so that he could work on the pincer grasp as well as sorting colors.  This requires direct supervision as the pieces are very small.

Below are more cards that I purchased from University Book and Supply that are approximately 5x7 in size and show lots of different scenes and actions.  You can use these in a variety of ways.

One thing I've learned about Beau is that we need to use things that he enjoys and use them to our advantage when trying to teach him something.  He LOVES Matchbox and Hot Wheels cars.  I try to teach him when he doesn't know he's being taught.  I will pull out his cars and work on colors based on the color of the car or truck.  He thinks we're just playing cars, he doesn't realize he's being taught at the same time.  We can also work on counting using the cars.  We can also sort the cars based on color.

We are lucky that we have a college senior, Erin, that babysits for Beau and works with him.  She is an elementary education major with a minor in severe and profound disabilities.  She brought some small trucks, paints and small wooden trucks to our house the other day.  She had him run the Matchbox trucks through the paint and then onto the white paper.  He used them as a paint brush.  It was easy for him to hold on to the car and he loves playing cars so this task was perfect for him.  He painted a cool picture - the tire tracks made for a neat design.  She then got him to paint using a paint brush on some small wooden cars that she had purchased at Wal-Mart for $0.99 each.  She used what Beau enjoys to teach him. 

These are just a few ideas but hopefully you can gain something from them.  I'm always looking for new ideas - as most of mine come from watching therapists.  Let's face it, teaching a child with an intellectual disability is a struggle but when they accomplish any of these tasks, it's like a mountain has been climbed!  Good luck and happy teaching (and playing)!

Beau's Afternoon at Adventureland

On Thursday afternoon, our little family of three headed to Altoona (here in Iowa) for a fun new experience for Beau.  Adventureland is our theme park here in Iowa and it had been many, many years since Andy or I had been there.  One of our downfalls with aging has been that amusement park rides aren't as much fun as they were when we were kids.  Something about spinning in circles while upside down and falling from the sky just isn't the same when your in your 30's!  My stomach and head don't seem to appreciate the joy the aforementioned sentence once brought me! The great thing about Adventureland though is that they have quite a bit to offer for little ones.  Beau loves to people watch and he loves things that "go" so that combination seemed to be good ingredients for a fun time.

We drove to Altoona during nap time so that Beau could get some rest before his big afternoon.  The Iowa heat was HOT, in the 90's with humidity equally as high - you stood still and you were sweating - but that wasn't going to affect our day!  When we got there, this is what Beau looked like.....

He was resting up for his next big adventure and shortly after arrival he woke up.  We went there wanting to have our 3 1/2 year old to have the same experience every other 3 1/2 year old "typical" child would have.  As we entered the park, Beau immediately had his eyes wide open to all the sights and his ears open to all the sounds.  He was amazed!  Our first stop was the semi trucks.  We weren't sure how he would react and this ride was perfect because an adult could ride along with their child.  Even with as enticing as the semi's looked, he wanted his Dada to go with him - just to be safe! 

It wasn't long before he realized that THIS WAS COOL!  He eventually went on the trucks with mama and then finally made it to the inside of the semi truck with mama on the back. 

It may seem like we spent a lot of time on the semi's (OK, so we did) but we DID finally make it to other rides.  I guess this is the part where we were the parents of a 3 1/2 year old child with some disabilities and we had to be careful with the rides that Beau went on.  We watched as other children his age and younger ran, jumped and talked all about the rides they wanted to get on and how much fun they'd had.  We had to be careful that the ride wouldn't be one that he could stand up on and lose his balance, because he has horrible balance issues.  The bumper cars, he would've loved but the head jerk from a tough impact might trigger a seizure (and maybe that's impossible but that's all I could think about).  He was afraid of the rides that he had to do on his own.  We went to the "infant ocean" and I placed him in a little boat all by himself. He pointed to the seat beside him and grunted, his way of letting me know to sit.  As I fastened the seat belt and stepped away, a moment of panic set in for him and he signed "all done".....

The boat started to move and I was right there just waiting for him to try to stand up and I'd run to his rescue. It took about one lap around and then......

the smile crept up and he enjoyed the ride all by himself.  I was so PROUD of him and how brave he was!  There were a few rides he couldn't do but we gave him the best experience we could for his "abilities". 

We took Beau over to another ride that involved going on it alone, but as children were being placed on the ride, I was quick to get him in his favorite - the fire truck - and in doing so I placed him next to another little boy his age, maybe slightly younger.  Beau was so excited about the ride especially when he realized he would have a partner for the ride.  We had felt a little bad that he was on rides alone without another kid.  So many children were there with siblings or friends so we felt a little guilty.  As the ride was waiting to start, I overheard the little boy next to Beau talking to him.  My heart dropped as I knew Beau wouldn't be able to respond.  Beau though, did what he does best; he flashed his million dollar smile and said "dadadadadada".  It was a word he knew and he tried with all his might to communicate with the little boy.  The boy looked at him trying to understand what he was saying and then went back to focusing on "driving" the fire truck.  Yes, it made me sad.  Sad for Beau because he is hindered by his lack of communication but somewhat relieved that 3 years old don't realize that he is "different" than them.  My heart worries about a couple of years from now, when children DO notice the difference.  I like to think that it just won't matter, especially when he flashes them that AMAZING smile. 

From the amusement park to the water park portion of Adventureland, we enjoyed every moment.  I would have to say my favorite moment was my time with Beau in the lazy river.  He smiled, literally, the whole time.  He hugged me, laughed with me, splashed with me and we made some amazing memories that day...just like any other mother and her 3 1/2 year old. 



I'm pretty sure you can tell by the expression on his face, that he enjoyed our swim together. 

Tickets to Adventureland, $23 each, gas to get there $54, the memories I walked away with - PRICELESS.