Leaping Milestones!

There are times when as a special needs parent you get so sue to doing things for the child that you forget to push them to do it themselves.  Or at other times you're too tired with the struggle and so you don't bother because another battle seems too much.   And then out of the blue they do something you had know idea they were capable of and you begin questioning how much you've coddled him the last while.   It's been very much that way for us.  We finally got Bubby to learn to pee on the potty.  It was a combined Palovian method of cueing him to urinate when he got into the shower to shifting to turning on the shower and getting him to do it in the potty.  When he realized he got to flush the potty he was highly motivated do so at every opportunity, even at unfamiliar locations.  Dry diapers are seriously the best!

This has been the catalyst for all sorts of things as we've seen him grow by leaps just in the past few weeks.  It started with small things like deliberate eye contact and more attempts at gentle affection.  Or when we went to a park and his willingness to climb a structure that would have had him in a fit in the past.    New surfaces at the park that feel 'unstable' to him that tentatively trys out over and over while we're there.  One evening Keila was reading a book to Pumpkin and he crawled up on the bed to join in, looking carefully at all the pictures as she read.  These were all wonderful to see but he had more in store for us.

We attened our annual Special Kids day at McCormick Railroad Park.  Usually the other kids have a blast with the carnival style games and the bounce houses.  Bubby will watch, try a game or two and sit happily in the stroller munching on popcorn and ice cream.  He doesn't venture out too much.  Last year I took him up a huge bouncy slide and came down with him to his utter terror.  I thought I'd push him to do it again this year but Bug love offered to take him.   He was scared and struggling to climb up so a volunteer helped to carry him.  Then he was cautiously looking down and sat at the top for some time until Keila dragged him to one side and slide down with him.  He squealed with laughter and surprise.  His response was positive enought that I tried it again with him.  He was self motivated enough to climb on his one with minimal support at his rear.  Once I was with him he was eager to slide and we'd say 'Ready, Set' and he'd shout his 'Go' .  We did this 5-6 times.

Then we took our train ride which usually has him snuggling in close watching apprehensively as everything passes.  This time he was laughing, waving his arms in the air and squealing.  We tried the carousel where he usually clings to us in fear and again he was laughing and giggling, screaming with joy.  We asked him if he wanted to do it again and he said a clear 'Yes!"  It was a thrilling day for all of us and we were all quite exhausted when we came home




The week later we went to a similar event that was much smaller in scale.  He watched Pumpkin play with different sensory bins and  It usually takes some trickry to get him to stick his hands into new materials, but not this time.  Obviously some were tolerated more than others but he was trying new things!

While we were there he was great at listening to instructions, sitting and waiting patiently while Leora got her balloon, or while I grabbed a snack.  These gave me the courage to try the petting zoo with him.  He's fairly shy of animals, especially when they're larger than himself.  We had never attempted the pony rides but watching Leora on it I decided it was time to try.  I asked him if he wanted to ride the horsey and he said yes. (his automatic reply to everything is a no until it registers that we're offering him food he likes then he changes it to a yes)  The reply had me pretty surprised but he was watching everything carefully so I figured it wasn't a mistake.  When it was our turn he walked up to the pony, put a gentle hand on it.  I could see the size of the animal was making him change his mind so I told him I was going to pick him up and put him on.  With a little help he sat up and smiled.  We did high fives and petted 'Sugar'.  Then things started moving.  With one hand on me and one on the saddle horn he was curious, then aware, anxious and finally he was done.  He slide off into my arms and proudly gave high fives to Pumpkin aware that he did something a little scary but he did it well.  There was no screaming, no hitting or kicking, no fits of any sorts.  He was tired though and after another snack he clearly wanted to go home and i honored that wish.

We attempted to get him into a harness at AZ on the Rocks.  He did it so nicely that I thought I might as well hook him up to see if he'd climb.  Apparently he'd been watching us, he threw down his paper he was flipping and began climbing.  Although he didn't get too far I was pretty darn impressed that he did it.  These skills have paid off as he's gone hiking to harder areas.

This impromptu hike at Papago Park really had him working hard to get to all the caves the others were going to.

I am so incredibly proud of this little man.  I love his zest for life and I love to see him grow.  His triumphs will never make any world records but they make my world turn.  His birthday is this month as well as the World Down Syndrome celebration.  I'm so grateful for the unexpected gift you are.  You are moving mountains!

Girl Time!

It's a rare blessing for a mother to have some away time but as the years have passed I've seen how finding this balance helps me to be a better wife and mother.  We also wanted to prep Bubby for the time I'd be gone for my brother's wedding so I took a trip with a girlfriend for 3 days to check a few things on a bucket list.

I've known Natalie since I was a newlywed and loved how close their family lived to us.  She'd served a mission with the Thai people and loved Asian food so we could always share Chinese goodies with their whole family.  This meant I could safely plan on this fun food stop for Xiao long bao and know that's she'd enjoy it too!

We attend a bookclub that's been around for around 15 years so the Last Bookstore was a fun find for us.  They used books to decorate and the haphazard arrangement of shelves made each turn in a corner a new adventure with lovely little nooks for reading comfortably and browsing.

The little shops in the bookstore had a few clever items, but this one was particularly funny to me.

I have a thing for farmer markets, so of course we had to stop here.  Much too much to eat and try.

I was told Roscoe's chicken and waffles was a must so once we got our place in Hollywood we went out for a late night dinner.

So the real purpose of the trip was to get on to see the behind the scenes of The Price is Right.  I'd only ever seen one episode, but my kiddos had watched it with Helen Young, their adopted grandmother.  They loved it and Natalie always wanted to see it in person.  I'm always up for an adventure so she made us matching shirts and we went.  Just next door was another farmer's market where I had fried oysters for breakfast!

We had a ton of  fun despite the hot long wait.  It was neat to chat with people from all over and it was amazing how efficient things run on a set.  Our show airs October 18 and both Natalie and I were shifted around during the show to fill in gaps.  Neither of us wanted to be a contestant but we should show up in the background.  That's all the claim to fame I care for!

Dinner at the farmer's market again, gumbo!!!

The following day we took a drive to Randyland, an artist who works with glass and has it installed in his backyard.  He wasn't home (apparently he isn't often there) but we got a view from below.  I suspect when the light shines through the glass and you're right under it it gives a beautiful effect.

The night before we'd watched a short documentary on Madame Tussauds which made the wax museum fun to see.  Natalie was the best for pictures!  So fun to just be goofy together!

I'd never been to the Chinese Theater next door so we stopped in for a short time.

Our last stop was an area with a high concentration of Ethiopian people.  I really wanted to try their food so we stuffed ourselves before leaving for home.  Injera was the 'bread' used for scooping and dipping into the food.  It had a spongy texture and was slightly sour in flavor - a truly unique experience for me.

It was a blast and one I think we need to repeat! (hint, hint Natalie) Girl time  means we can get in all those things our husbands don't care to do and feel footloose and fancy free - even if it's only for a few days!

Silent Burdens

There's a mental strain with being a special needs parent that is hard to explain until you have experience it.  It's especially hard when the child is nonverbal.  Recently Bubby had a constant runny nose and cough.  We figured he might have allergies like Kent and gave him several different medications but to no avail.  His energy levels were low and even when going to the park he would either reufse to go out to play or turn and run back to the car within minutes of arriving.  We were unsure if this was due to his poor sleep (we still have yet to determine if he has sleep apnea) or if he was actually sick.  His appetite was low or inconsistent and we found a rash on his backside that resembled petechia (round small flat spots that indicate bleeding into the skin from capillaries).  The slow accumulation of these signs led me to worry about leukemia.

The occurrence of leukemia in Down Syndrome children is higher due to a genetic mutation that they have.  At the same time this mutation makes these children more receptive to the chemotherapy and they have a lower reoccurring rate than neurotypical children.  When Bubby was first born I must have read everything possible to understand some of the physical concerns that come with the extra chromosome.  I recognized the signs and since we had just passed his 6th birthday scheduled his well-check and ordered the tests to check his blood.

We were relieved to learn that his blood looks normal and since the petechia was above the nipple level and not constant it was not likely to be leukemia.  The allergy medications we were using was boosted by a prescribe dose of Singular and finally his sinus are clearing.  Whether due to a growth spurt, his appetite  and energy levels come and go but is more typical of him as of late.  We are relieved to know he is relatively healthy.

Someone wants cake!

On the other hand it was brought to my attention how much I keep a running list of signs and behaviors that is more than a typical parent does.  The other day we were at the library for a special needs Storytime and I could tell that it was time to go and we were close to that meltdown line.  My friend asked me how I knew since he was still smiling and laughing.  I cited a list of behaviors (nearly checking everything on the list) whilst putting on shoes and hastily gathering the others.  It made me realize that I keep other mental lists through the day that aren't typical for other parents. These range from therapies to be rearranged, appointments and paperwork all the way to the daily sleep or bowel movements of said child.  It's the weight of a caregiver and one that can't be shifted easily to anyone else.

These are the things we never really talk about, never really share. Its as if voicing them will give them greater power over our lives.   They are the silent burdens  that just become a part of the weight we always carry around until something happens to make it heavier or lighter.  I was so exhausted the few days after the 'all clear' came through.  I hadn't known so much mental and emotional stress had been weighing on me and I needed time to recover. Sadly another mom in our community posted that her child had tested positive for leukemia and my heart went out to her.  Now she was facing the reality of all the worries that had been running through my mind only two weeks before.

All the parents I know that have a special needs child love them dearly and we wouldn't trade them for the world, but when we seem flaky, distant or simply too tired to engage  - give us little leeway.  We carry more than you can see.

Bubbykins is Six!!!

I can't believe Bubbykins has been with us for 6 years!  He continues to teach us, 'train us' and remind us of what truly matters in life.  The growth he has experience this last year has been wonderful and I'm so proud of all he try's so hard to do.
                                          

This boy is a solid 50lbs!  One look at him and the doctor could tell he has a strong build and remains high on the growth chart, especially with the Down Syndrome.  He still loves basketball and 'swimming'.  He is the most enthusiastic cheerleader you will ever find. Our homeschool coop has a few boys that will shoot baskets.  He loves to watch them and often yells his enthusiasm or claps whether they make a basket or not.  He's already learned that the effort is worth cheering for.  Most of the times he is my little runner and I hope he'll be my partner on my early morning runs someday. This is a mixed blessing for me and has definitely kept me young!
                              
Bubby couldn't wait to get out of his church clothes before jumping into the pool.

His time in therapies has shown us that Bubby does much better when his sensory needs are taken so Kent built a swing in a our room that is wide enough to allow us to sit with him and work on writing or puzzles. He absolutely loves it and will drag either us or our respite worker, Mary upstairs, pulling activities he likes from the book shelf to work on.  He knows all his letter sounds and we have begun some reading activities with him.  I suspect he will better at reading sooner than he will be at clear speech and I hope it opens another world to him.

He wants to be just like everyone else and gets extremely upset when we don't give him that chance.  Lately he's wanted to help make the smoothie in the morning or unload the dishwasher.  This always has a little panicked as he picks up the glass blender casually and swings it around.  Even when Brother limits him to the plastic ware he isn't satisfied and wants to do everything else.  Thankfully amid all the broken glassware and plates, he has never cut himself so far. I have to remind myself that as 'young' as he looks, he is growing up and I need to give him the opportunity.
                                     

Finding something that Bubby turely loves is hard.  We decided that since he loves raisins, nuts and apples, I would bake him a cake with all of it in.  The spice round the flavor nicely and we made it a second time for our Easter feast.  It didn't come out of the bundt pan the way I hoped but he sure enjoyed it.
                                      

Bug bought a large amount of cookies as a gift and we bought some puzzles that will help with pronunciation and spelling.  The cookies were the definite favorite for him but he has since grown to

Since homeschooling he has begun to interact with us more, both in actions and verbally.  He will often drag Bug to the swing out back and sign 'swing'.  She'll guess it correctly and he will enthusiastically yell and jump with delight.  If she declines he is quick to slump into a pile and cry plaintively which always softens big Sissy's heart and she relents to his wishes.  He shows his affection more often, with his head tilted into your body, or a gentle pat or a funny tickle with his fingers.  When he climbs into your lap with a book it's a clear sign he feels secure with you and it's a huge complement.
                          
He has his favorite routine at night and it has become a treasured time for us.  He climbs into bed and I lay down beside him, covering him with our family blanket (which is now his!) and laying softly on his backside I sing him his lullaby.  Often he reaches back and pats me gently or tilts his head to touch mine.  When the song is done he sits up to lay on my backside as he hugs me and pats me in his funny way.  I often tease him and tell hhim it's his turn to sing me a song which he yells a negative to and pats me a little extra as if to say, "You don't need a song to know I love you!"  If there's time there is giggling and games where I pretend to snore and he wakes me up, or we play peek-a-boo with his blanket.

I am so grateful to have this little man in my life.  His persistence and determination amaze me and I can't wait to see what he does in the future!  Happy sixth birthday my boy!

What Really Counts!

Those who know us well, know that our family is not huge into athletics.  There's a huge time commitment that affects the whole family, politics and issues at times with coaches and or other players and their parents.  Swim team has been a big exception.  For one, when you live in AZ you HAVE TO learn to swim to survive the summers.  For another, it was a measurable 6 weeks that I could commit to and be done for the year.  We never pushed it, but this year Bud pushed himself and we really could see results.  His best time for backstroke beat the minimum qualifying time by 1.22 secs.  His best breastroke time was just 0.77 sec above the qualifiying time.  It was his big goal to simply qualify so he could be with his friends who have inspired him to do better.  Since he clearly beat the qualitfying time, we thought he was in for sure.  He spent days telling everyone and his friends congratulated him and all was well until just after the Fourth of July.

Pictures from the swim team party .... sugar to fill their wildest dreams!

Apparently there's a rule for the Desert Swim League that only 8 people can compete for each stroke per team in each age group.  For the 9-10 yr old boys, he did not make the top 8 scores, let alone the top ten so he could be a alternate.  There are just that many boys who swim so well in his group.  This all came crashing down less than a week before finals and it was a bitter pill to many boys, not just our Bud.

Awards ceremony

It was also a bitter pill for me as a mother.  I had been hard to get him to his extra practices and pay for the stroke classes, to attend extra swim meets to get closer to that qualifying time.  It was particularly difficult to see that disappointment deaden and dull our usually happy go-lucky boy.
He wanted to continue practices and do the last meet before the competition because he loved the company of these friends so much, but the reminders and discussions revolved around what he could have no part of it was clearly painful.  For days we'd see moments  he'd be fine and then something would bring it to his remembrance and his spirits dropped again.  It was his first truly epic disappointment and he was striving to work through it the best he could.

We talked a great deal about what it meant to be a good sport and in his heart wanted to be happy for his friends but was so pained at his disappointment that he couldn't find words to express himself.  the day of the competition he managed to put together a little video clip to send to two of his friends wishing them luck. 

Such fun horsing around with his friends!  He can't wait till next summer when he sees them again.

I was such a proud Mama at that moment.  It took strength and character to do what he did.  I asked him how he felt after the message was sent and his reply was telling," Still sad, but good too.  I can be a good friend and team member."  And that's what really counts in the end and as far as I'm concerned, he won the championships in ways no trophy could ever really commemorate!  Love you Bud!