And the winner is…

Karen Johnson says:

Hi, I’m new to your blog having read a comment you left on Kelle’s blog in regards to boneless puddles. I’m a new mom to DS but my baby is actually going to 16 in December, I married her Dad and fell head over heals in love with her. Soaking up all I can about DS parenting, Im glad I found your blog. It’s real, it’s life, it rocks. Thanks for sharing your story.

Karen (and everyone else), thanks  for leaving your comment.  We’ll do this a couple more times this month in celebration of Down syndrome awareness month so keep coming back.

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Tiger cubs

Born ready

Last Thursday night, Jonathan and I went to the Cub Scout Pack 16 troop meeting.  Jonathan just joined as a Tiger cub.  So far we are having fun.  At the troop meeting Jonathan and his best friends Max and Ian, all handsome and trim in their new uniforms, were sworn in as new scouts and threw their sticks into the fire to make the flames of the pack burn brighter.

***

When I go to events like this, I’m always watching Jonathan, praying that he behaves well and doesn’t do anything to embarrass…well me, I guess, because he sure doesn’t get embarrassed!

When excited, he is hard to understand.  He always has his hands up to ask questions, and is so excited to get it out that his sentences come out “whewecamoutisit80milesaway?” (When we go camping, is it 80 miles away?)  The scout leader entertains the question and smiles politely, but you can tell he has no idea what Jonathan said.  (I haven’t figured out how to play these situations.  Should I jump in and coach or interpret?  Or let him figure out how to be understood.  I want him to stand on his own, and not be that kid that always needs someone to assist and translate.)

As far as being embarrassed by what he might say, he is a pretty typical kid.  What I have come to observe is that all the kids have their own little quirks that make their parents uneasy.  Before the meeting is over, I relax and enjoy watching the kids be kids.  The other parents do as well.

***

After the swearing in ceremony, the pack played games-tug of war.

Getting ready

Dad, hold this

can't get real traction with crocs

The winning team

Both Dad and Jonathan had a great time.  Jonathan fits right in and his cub mates treat him like one of the guys.  Perfect.

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Jonathan’s first…

Birthday.

I was going through old pictures and came across pure gold.

I'm commin to git you

I done gone ta heaven.

Oh momma, my thumb is intoxicating

Yep! Pretty good! (by the way, look at how neat I am.)

December 5, 2003.  Twas a good day.

And its not a birthday without presents.  Leave a comment below.  We’ll choose one at random and send a free Deedah DVD.  Be witty, poignant, or just say hi!

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Grandma’s post

I still receive handwritten notes from my mother for my birthday and random occasions.  My mom always writes beautifully and reminds me of some long past event.  I asked her to write a post for Deedah and Me knowing I would no doubt capture some nugget.  The assignment was without direction, but Brooke couldn’t resist some comments.  With no further ado…my Mom from New Mexico:

I am Jonathan and “Deedah’s” Grandmother, Phil’s Mother, and Brooke’s Mother by marriage to Phil.  (“Mother-in-law” has a negative, antiseptic ring, I think.) :-)

Surely, you can imagine the joy I have watching Jonathan and his family blossom and grow in love.

Let me share some snapshots. Phil had a child’s part in a summer production of “Oliver.”  He said, “Please sir, may I have some more?”  Following high school, he spent one semester at a local university.  Wrapping that up, he announced, “the profs are all stupid”, and moved to Reno.  He carved out a career and did well.  (We all know from previous blogs that his university days were not over and that he went onto establish another career)  But back to Reno – He did well there in more ways than one…he met Brooke.  And, did I mention, he is an artist?

Brooke has many talents and strengths!  She is successful in all she undertakes.  What I love most about her is her warmth, her heart that beats for everyone.  She has taken on many causes.  When Phil’s older sister had breast cancer, Brooke put her talents to work on that cause.  Today, Phil’s sister is a successful weaver, business woman, wife, and Mother, and is radiantly healthy.

NOTE FROM BROOKE:  My mom by marriage seems to be giving me a lot of credit for my sister by marriage’s recovery – In case you were wondering, in my spare time that year I also walked on water and performed a few other miracles as well. :-) But can you all see why I love by mom by marriage so much? :-)  Unconditional love is a wonderful thing! BACK TO RAMONA:

Well, my point is, both Phil and Brooke are bring it on, more porridge, please, kinds of people.

By now, you all know Charlotte (Deedah) and Jonathan.  How could a Grandma ask for more?  (Actually, there are more-15 Grandchildren and 1 Great Grandchild) but, I digress….

I remember well the phone call from Brooke following the determination that she and Phil were going to have a baby diagnosed with Down syndrome.  Tears filled our eyes, and blurred our words.  I remember saying, “We’ll make it through this!”  How noble and brave of me!  Distance has been a pervading devil in our lives as a family (Phil has six siblings scattered from here to Germany) so, in short, Phil and Brooke have made it, and continue to make it, through “this.”  “This” has turned out to be a most wonderful thing.  It is a most remarkable and inspiring journey for all of us who look on.

What about Jonathan?  I like to think I saw his first smile when he was a hand held bundle.

NOTE FROM BROOKE:  She is not making this one up.  I have the picture to prove it. :)

Grandma and Jonathan

Sometimes, Phil calls me on his way home from work.  I love hearing the shouts of Charlotte and Jonathan when he pulls in his driveway.  One time I was sitting in my car, waving goodbye to Charlotte and Jonathan.  In a burst of spontaneity, Jonathan ran up to my open window, and planted a kiss right on my lips!  Is that a treasured memory, or what!?  More recently-and he is right on target as little boys become bigger boys-he quickly and quietly, told me he loved me (Brooke, it is precious to me, even if it was your suggestion.)

NOTE FROM BROOKE:  Believe me; if Jonathan didn’t want to tell Grandma he loved her, he wouldn’t have :-)

The short film, “Deedah” has inspired and educated so many people!  Like a pebble dropped in a pond, the film has produced ripples, then waves of inspiration, help, and camaraderie for parents who share the challenge and joy of children with “Up!” syndrome.  Karate, swimming, surfing, hockey, basketball, reading, schoolwork, bumps in the road, hard work, tears, lots of laughter and faith in God…Bring it on sez Jonathan as he observes the world from Phil’s six-foot high shoulders, and Brooke’s warm, cuddling arms, and Deedah’s unshakable confidence.

'09 St. Patrick's Day Parade, Savannah

Love, Mom

Thanks Mom!  You are welcome here anytime.

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Jonathan said…

Jonathan:  “Daddy, I want to be the president.”

“Really!  Why?”

“So that I can go out to eat more often.  And go sailing.  And go out of town.”

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Random conversations with the boy

Tonight at dinner, Jonathan regaled us with the exciting goings-ons as school.  He started with “Buenas tardes” in a perfect accent (to our gringo ears.)

***

Later he went on to tell us about two men kizing (kissing?)  This was right on the heals of a conversation about some new teachers at school, so Brooke and I began inquiring…

“Kissing?”

“No! kizzing!”

Charlotte:  “Jonathan, men don’t kiss other men.  Stop making up stories.”

Jonathan, hand on his forehead in exasperation:  “Two men keelling.  I saw one man keeling another man!” (killing!?)

Holy cow!  What is going on down there? Did Jonathan witness some violent awful act?!   (Stay calm, he doesn’t seem to be too shaken up.)

“Jonathan, what are you talking about?  Did you see someone fighting?”

“Yes!”

“Where? At school?”

“Upstairs in the bonus room.  Pocahontas!”

“You were watching Pocahontas?”

“Yes!”

ahhh….  (speech about real life vs. movies deleted.)

***

Movie times Part 2

In the bonus room we have an antique machine that plays movies on these black things that always need rewinding.  We also have many antique videos such as Star Wars, Snow White, Lady and the Tramp.  You get the idea.

More than once, we have heard a thump-thump-thump excited sprint to the top of the stairs followed by an enthusiastic scream:  “Mom! Dad!  Lion King coming to a theater near you!”

Its like a time machine!

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Adventures in Academia, or What I Learned in Preschool

This post started out as an answer to a question to our Therapies post, but it soon became clear that it deserved its own post.  The comment was:

Thanks so much for this information! I think I was the one who originally asked about this, but I’m sure others have asked as well.

One last question, does Jonathan go to a private school or public? Did you investigate both options and why did you choose the one you did?  And…did he go to a preschool? If so, public, private or Early Intervention?

Hi Heather, thanks for the questions.  We moved to Savannah from Green Bay, Wisconsin, so I’ll answer your questions for both locations.

Jonathan goes to public school.  We targeted our neighborhood due the exceptional public elementary school.  Good thing too, as the private schools don’t seem to have the ability to give Jonathan the one-on-one he needs (this comment is based on very cursory exploration.)  Because the public solution was satisfactory, we didn’t do a deep dive into the private solution.  Our primary motivations for choosing a school were the quality (reputation of the school); the ability of both kids to attend the same school; and tuition was certainly a factor.  Because the public option was strong, we stopped looking.

We know it doesn’t always work for everybody, but we believe Jonathan is better off attending the same school as his sister and his neighborhood and church chums.  Jonathan is in first grade this year after going to Kindergarten for two years.  He receives full coverage from a paraprofessional, who is by his side all day, making sure he’s “getting it” and staying on track.  (He needs the same kind of one-one-one assistance when it comes to homework – He does the work himself – he just needs direction to make sure the work gets done.)   In his class of 20 children, there are three other special needs students besides Jonathan.

These three are the only special needs kids in the entire first grade this year.  However, the new kindergarten class at our school has about a dozen special needs students.  We believe this growing special needs population speaks well for our neighborhood school.  First of all, it’s more reflective of society at large.  And secondly, it’s our hope that this group of children will continue on at the school through fifth grade and that awareness and acceptance of those with special needs will grow.  That being said, however, even if Jonathan were the only special needs child in the entire school, we would probably keep him there as long as his academic needs were being met because we believe the most important factor for Jonathan education-wise right now, is to attend the same school as his sister and his neighborhood and church friends.  It’s all about what Sue Buckley, the founder of Downsed, calls creating an “ordinary life” for our children with Down syndrome- more on that in my next post.

As for preschool, Jonathan started attending preschool in Wisconsin when he was three. (Charlotte and I nervously followed his bus in my minivan the first day – It can be a bit daunting to see your tiny three year old board a big ol’ school bus for the first time.  Charlotte sure was jealous, though!) The bus took him to a strictly special needs pre-K class two mornings a week at a local public school.  Three other mornings a week he attended our church preschool (private preschool).  Because he was not potty trained at the time, the private school required to he had to have “full coverage.”  He had a special-ed teacher from the public school system who came in to assist him for part of his time in the private preschool, but because of the potty training issue, when she wasn’t there, I was there.  Fortunately, I worked nights at the time and was able to make that schedule work.

I loved the special needs preschool because the teachers in that class were so enthusiastic and so attentive to Jonathan.  But the private church preschool provided some major aha moments that made me convinced early on, that long-term inclusion was probably the best way to go for Jonathan. During Jonathan’s first October in the private preschool we had a Halloween party.  Many parents were on hand to help the children at different activity stations.  One activity involved identifying numbers.  The dad who was manning that station yelled out in the middle of the party, “Check it out – Jonathan is one of only four in the class who is getting this right!”  Although I guess I could have been offended – “What – you’re surprised Jonathan can do this?,” I was actually quite grateful to that Dad.  It made me aware that just because Jonathan has Down syndrome doesn’t mean he always has to be at the back of the pack and that I, as his parent, should always have the expectation that he can and will succeed.  I thought it was also a great awareness moment for the other parents who were there that day. (Not that we always have to be a “poster family,” but I believe Down syndrome awareness is often best achieved through these small one-one-one experiences.) The private preschool class also made me aware that friendships with typical children were a real possibility for Jonathan.  By the time we moved the following December, the teacher was telling me she was dreading telling the children that Jonathan was moving because he was such a popular kid.

When we moved to Savannah, however, Jonathan quickly went from Mr. Preschool Popularity to Mr. Menace.  I was trying to replicate what we had in Wisconsin in Georgia, so I signed him up for a private church preschool near our new house two mornings a week. (Several other church preschools had refused to take him.  This one said yes, but barely.  The director said yes Jonathan could attend – if I came with him because of the potty training issue and if it was okay with the teacher.  It was pretty clear it really wasn’t that okay with the director, but thankfully the teacher was willing to give it a go.)  The teacher couldn’t have been more enthusiastic and wonderful.  However, her class did not have the structure Jonathan was used to.   Jonathan became a huge discipline problem, refusing to listen, hitting and biting other children, often kicking and screaming.  At one point, I sat alone on the floor of the classroom circle area while the children were having a snack and started crying.  I’m thinking, “Before I moved here, I had a CAREER – Now I’m going to PRESCHOOL – and I can’t even get that right.”

It was indeed, far more challenging than anything I had ever encountered on the job.  Jonathan had never been a discipline problem before.  After consulting with his teaching aide in Wisconsin, we agreed that Jonathan did not feel safe in that class because it was too unstructured for his taste.  We told the teacher and the director that we were pulling Jonathan out.  I begged them not to see this as a “Down syndrome” problem, but instead a “Jonathan” problem.  I was horrified that some other family with a child with Down syndrome would be turned away in the future and would be told,  “Sorry, we had a child with Down syndrome attend here a few years ago and it just didn’t work out.”

When we moved to Savannah we also signed Jonathan up for the special needs preschool at our neighborhood school for the mornings he wasn’t attending the church school.  All of the other children  in that class were going for a full day, but I wanted to keep Jonathan’s schedule similar to what we had before.  He was still only three and I personally wasn’t ready for him to go to school fulltime just yet.   They accommodated me and allowed him to attend during the mornings only.  He thrived under the structure of that classroom and the guidance of an excellent and caring teacher.  There were no more discipline problems and yeah! – I didn’t have to go with him because the special needs staff was expected to (and used to) children that weren’t yet potty trained. The only missing piece of the puzzle for us at that time was that Jonathan was no longer in a classroom where he was interacting with his same age typical peers.

I wasn’t too worried about that, however, because I was confident things would be different the following fall, when Jonathan turned four.  That’s because in Georgia, we have fully funded public preschool programs for four year olds (It’s called pre-K or pre-kindergarten.)  Slots are filled on a lottery basis.  There were 40 available slots at our neighborhood school and another 20 at a nearby school.  This was my plan – Jonathan would get into the mainstream pre-K, we would pull him out for speech and everything would be perfect.  Well, we all know what they say about plans. :) Jonathan drew a very high number and did not get into either school’s pre-K program. That meant Plan B, which was putting Jonathan back into the special needs preschool and doing it for a full day Monday – Friday.  We did that, even though we were not entire comfortable with the idea that Jonathan would no longer be mixing it up with typical kids.  We found, especially for Jonathan’s speech development, it’s been extremely beneficial for him to be in a setting where he can model children who do not have speech issues.

After about a month into that school year, I stumbled upon another nearby state lottery funded pre-K program for four year olds that had an opening.  I went and observed the class probably three times before the staff sent over a special needs teacher who basically asked why I wasn’t ready to pull the trigger. (They were probably thinking: “if this mom comes over for circle time one more time, we’re going to have to either give her a snack and a nap mat – or offer her a job” :-)

The reason for my hemming and hawing was that it really wasn’t broke for Jonathan at the special needs pre-k and I didn’t really know if I needed to fix it.  Again, he had an amazing teacher at the special needs pre-k.  She was also willing to accommodate our wish for more peer modeling opportunities.   We were just starting to work out a plan where Jonathan would go to recess and what they call specials (things like art, technology, music and gym) with the typical pre-schoolers so he would have that peer modeling again.  He would spend the rest of the day with his special needs peers.  Also, the special needs pre-k was at the school Charlotte attended so that was a big plus.

Another thing that haunted me were those discipline problems at the Savannah church preschool.  What if he freaked out the same way he did before?  What if he didn’t fit in at the new school, since we’d be moving him five or six weeks into the school year?  What if I made the wrong decision for him?  The special needs coordinator at the new school said, “The only way to know is to bring Jonathan over here.”  We set it up for the following Friday.  I sat alone in an adjacent room for an hour and a half, trying to distract myself with a novel, while Jonathan tried out the new school.  The special needs coordinator came back and said, “What’s the problem, Mom?”  Clearly there wasn’t one.  HE LOVED IT!  There was structure very similar to our church preschool in Wisconsin, there was a speech teacher from a nearby public school who worked with him one-one-one several times a week and there was typical peer modeling. The only problem was the teacher, with her lovely slow southern drawl, had a habit of calling her kids “Baby.”  Like, “Come here Baby.  How are you today, Baby?”   “Great job, Baby!” Jonathan would yell at her, “I’M NOT A BABY!  I’M JONATHAN MAY!!!”  Thankfully, she stopped calling him “Baby” and they were fine after that.  So after all the worry and indecision, Jonathan was finally in fulltime inclusive preschool.  The hardest part of the whole thing was “breaking up” with the special needs preschool teacher who we loved.

The bottom line is, in our opinion, there is no right or wrong when it comes to these issues.  So far, we’ve found full inclusion to be the best situation for Jonathan.  Others may have found just the opposite.  I would, however, strongly promote the idea of getting your child with Down syndrome into some kind of preschool early on – especially full inclusion or a combination of special ed and inclusion that Jonathan had from the very beginning.  (Even if you home school, I think a Mother’s Morning Out program where your child can mix it up with typical peers at a young age for a few mornings a week,  can be very beneficial.  Playgroups with typical peers can also be wonderful for our children with Down syndrome.)   However, in a more structured setting, they will learn not only academic skills, but great social skills that they can build on for years to come.

Brooke

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Therapy

One of our readers asked me to blog about what therapies Jonathan is receiving and has received in the past.  I am happy to share this, but must admit that when it comes to therapy, I’m a bit lazy.  That doesn’t mean I don’t  believe in therapy or don’t appreciate everything that therapy has done for Jonathan – I just haven’t wanted to make our lives “all about therapy”  and often I’m not as good as I should be about making sure the therapy gets practiced once the therapy session is over.

However, even with a more “laid back” (or lazier) mom like me – (pick your own definition 😉 ) therapy has been a great blessing.  For us, it has provided reassurance over the years that we’re on the right track with Jonathan.  When we came home from the hospital, we knew that in just a few weeks our Birth to 3 (as they call it in Wisconsin – here in Georgia,  it’s Babies Can’t Wait) team would be ringing our doorbell.  Jonathan was assigned an occupational therapist, a physical therapist, a speech therapist and a regular teacher.  I wasn’t sure how I felt initially about having this rotating cast of characters in my home, but my fears were unfounded.  All of these women were amazing and will always hold a special place in our hearts.  It was his regular teacher who said to Jonathan at ten months, “Jonathan, you are such a smart boy!”  I’m a bit ashamed to admit this, but at that point in our journey it had never occurred to me that someone would ever say that to Jonathan – let alone at ten months.  For me, it was the ultimate “aha” moment – that yes, Jonathan is smart and yes,  as a parent I need to make sure the bar is always set high when it comes to his abilities.

Those first three years, we primarily concentrated on occupational (fine motor skills) and physical therapy (gross motor skills).  Physical therapy was usually once a week – occupational sometimes once a week, sometimes once every other week.  Speech therapy was usually just once a month in the beginning.  We would work on strength exercises of the mouth and other exercises designed to get him used to different textures.  As he became more vocal and verbal, we increased his speech therapy sessions.

I remember at times feeling frustrated, wondering if all this work was ever going to pay off.  For instance, when he was eight months old, it seemed like it was taking forever for him to sit up.  (And since Deedah is only 17 months older than Jonathan, her “typical” developmental milestones were still fresh in my mind.) I had reached a point where I was thinking – “Dude, anytime now!” 😉 His therapists assured me he was on his way.  They also told me it is not uncommon for parents of children with delays to get frustrated and impatient – and yes, even grieve at times.  Just knowing that I wasn’t alone allowed me to relax.  Now I look back on those days and am grateful that I was able to savor those precious baby stages with Jonathan a little bit longer.  He was my last baby and I now consider myself lucky to had have a “world class cuddler” to hold onto longer than the average mom.

Three years ago, Jonathan’s physical therapist at preschool “fired” herself.  This was after she rounded up a tricycle and brought it over to Jonathan’s preschool, ready to help him learn how to ride.  It was going to be a big day and she was ready to work on it at long as it took.  Well – Jonathan took off on the tricycle in an instant.  Oops – I guess I never mentioned to her that that was a skill he had already acquired.  After that episode, we both agreed that Jonathan’s gross motor skills had come along way and that he probably didn’t need regular physical therapy anymore.  In fact, Phil and I noticed that Jonathan’s gross motor skills really started taking off when we moved to a warmer climate, where he was outside more, running with a regular gang of children in our cul de sac.  I can’t tell you how much improvement has been made in just allowing Jonathan the time to go out and chase after his big sister and other kids.

We’re still working on riding a two wheeler, however.  He rides a bike with very loose training  wheels .  It seems like losing the training wheels is the only thing physically Jonathan has ever been fearful of.  Once it cools down here in Savannah, we’ll  break out the bicycle again and hopefully have success this fall.

I also believe swimming and karate have been a huge help to Jonathan because these are sports that allow you to develop and compete as an individual – on your own time.  However, he has also thoroughly enjoyed and benefited from team sports like T-ball and basketball.  I’m so grateful for our local YMCA, which has always been very supportive of Jonathan and other children with Down syndrome.  All of these sports activities have allowed Jonathan to interact with typical children.  And in addition to helping Jonathan with his speech and social skills, sports have also helped him immensely with skills like listening, problem-solving and waiting your turn.

About a month before school started this year, Jonathan’s private occupational therapist “fired” herself as well.  (She had been seeing Jonathan every other week for an hour.)  We miss her terribly because she is an amazing therapist and person, but we are so pleased he has come so far.  (She is also on standby should any issues arise that need more attention.)

Jonathan is still receiving services from the school occupational therapist who comes into the classroom occasionally to monitor what he’s doing and to make sure he stays on his current upward track.  The school therapist has been blown away by Jonathan’s progress.  This was huge for us because Jonathan was not even interested in picking up a pencil or a crayon two years ago before he went into kindergarten.  I started freaking out about this, buying several handwriting workbooks the summer before his first kindergarten year and trying to force him to sit down and do the exercises.  It was a disaster.  He just wasn’t ready.  Last year, before Jonathan entered his second year of kindergarten, I signed him up for a summer fine motor skills camp for kids ages 4 to 6. (I did not want to repeat the previous summer disaster with Jonathan, myself and the workbooks – let someone else deal with him I’m thinking ;-))  After a few days of camp, the counselor said she didn’t think Jonathan needed to come back for the second week – that his skills were too advanced for the class!  And so by the time Jonathan went back for his second year of kindergarten, his writing skills had gone through the roof.

Incorporating fun activities in his private O-T sessions and borrowing some techniques from the program Handwriting Without Tears helped a lot. So did inclusion. Last year in class, Jonathan sat between two typical boys who would constantly say to Jonathan, “Come on Jonathan – write within the lines – Come on, Jonathan – keep up – We all have to finish our morning work and then we can have fun, etc. etc.”  (God, I love those kids!)

Jonathan’s greatest delay, as is true for most children with Down syndrome, is speech.  He receives one hour of private speech therapy a week and three half hour sessions a week of speech therapy at school. At school, he is pulled out of class during a time where he is not missing any core academics.  It is not a private session at school, but a small group.  At first, I was concerned that a small group session would not be intense enough to meet his needs.  Now I believe, it’s a great setting for him – the children probably have more fun in a small group session and Jonathan always seems to thrive on a little healthy competition. 😉

Recently, Jonathan’s former private O-T said, “Jonathan’s gonna do what Jonathan’s gonna do.”  And I mentally finished the sentence – “….when Jonathan’s ready to do it.” It’s true.  Jonathan always comes through.  It might not always be on the time-line I have in mind but, in his seven years on this planet, he always catches up.  And that’s when I’m reminded of the therapy that Jonathan has provided for me over the years – teaching me that a little bit of patience and a little bit of faith – go along way.

***

In  Brooke’s next post:  more on therapy and  the Downsed Conference in Atlanta – hear what the professionals have to say.

And for future posts:  Post your own specific therapy questions as a comment below.  The staff at Hope Haven Children’s Clinic and Family Center in Jacksonville, FL will answer select questions.  Jonathan went to Hope Haven for an evaluation two years ago when he was five.  We were blown away by their therapy team and their practical, creative and easy –to-incorporate- into-your-own -life approach!

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Fish and Pizza

Last weekend, we headed up to Atlanta.  On Saturday, Brooke went to the Downsed Conference, while I visited with my brother and his family.  So here goes, a dang near perfect day.

First off, the kids slept in so I had some quiet time to visit with my brother and sister in law.  And we watched the Vuelta a Espana.  OK, my brother and I watched the race.

After lunch, we headed downtown to the Georgia Aquarium.  If you ever get to Atlanta, go.

For the bucket list:  Charlotte thought SCUBA diving in the shark tank would be the coolest.  You have to be certified.  I say Dad and daughter get certified and celebrate a future birthday in the tank.

Ahhh. No fair!

This bubble window allows you to get right out (in?) there.

Jonathan, don't turn around.

Jonathan & Charlotte. "Are you sure this thing is gonna hold?"

"Awesome!"

And for me, frosting.  Right there in the ballroom…classic cars.

"you buy this?"

A 1966 Ferrari 275 GTB.

“You are going to buy this one?”

“Yes Jonathan, I’m buying it”

“But father, mother and the children will be destitute!”

“yup…preetymuch.”

And finally, for those of you who think God has no sense of humor, the fish who inspired Jim Henson’s Muppets.

Take care of your teeth, kid. You don't want to end up like me.

We returned to Marietta and met Brooke and our new best friends for dinner at Marietta Pizza Co.  Jennifer is the Co-VP of the Down Syndrome Association of Atlanta and Chairman of this year’s Atlanta Buddywalk.  There are a lot of things to like about the Deedah project, but tops for us is meeting fantastic people like the Thanepohn’s.  (Shameless plug:  Jennifer sold 20 Deedah’s at the Downsed Conference and raised $120 for the Atlanta DSAA.  Learn more here.)

The May's, Jennifer & Bobby Thanepohn with handsome Preston

After dinner, the kids went outside to the square to play, where a cloud burst promptly washed them back in.  We bought time while the storm passed with ice cream for Spencer, Brier, Charlotte, James and Jonathan.

You've made us SO happy!

The girls began lobbying for a movie-night sleep over, but the day was too long gone.  That brought on a pout.

The pout

Charlotte:  “Brier, how do you do that?”

Brier:  “You have to bite the inside of your cheek.”

Jonathan:  “Daddy, I am shooting 50-caliber-mind-bullets at you.  You are dead to me.”

Good times.

Oh, by the way Brooke will blog about the Downsed conference in a future post.

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Then Jonathan says…

We went to the neighborhood pool last Monday.  One of the swim team organizers saw Jonathan and Charlotte and gave them their trophies.  Frankly, I’m shocked they recognized the kids.  We went to several practices early in the summer then, …uh…we didn’t.

Brooke and I were lamenting the money spent for swim team given how little the kids participated.  Then we saw the trophies.

Bobble-heads!

Then the frosting from Jonathan, pointing at the little swimmer’s backside:

“Look dad, look at how skinny my butt is.”

Classic.

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