Monday, May 28, 2018

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.

Tuesday, April 24, 2018

Grandpa Ngai

Grandpa Ngai came for a visit which was a really big deal for us.  The two oldest could hardly contain themselves at the airport and attacked with hugs and loves the moment they saw him.

 
I don't think he could have endeared himself any better with the collection of rocks and fossils from ages ago that he gave to the kiddos even before unpacking.


I think this was Bubby's favorite meal out!  Check out the pizza face!
 
The week was spent in our usual pursuits with the beloved company of Grandpa.  Free time was spent  playing games of all sorts, snuggling to read books or watch shows, chatting away about everything and everything of interest.  My children love an audience and if that isn't proof enough then Bubby choosing Grandpa as a reading companion surely is.  He chooses you and it's a pretty special thing when he does it.

It was wonderful for me, the chats in the evening as he got to know Kent and. A little better, the walks around the neighborhood or to see the interaction with my kiddos.  Before he got here Kent had prepped some questions with the kiddos in an effort to get to know him better and how it was growing up in Hong Kong. It was a fun game to play while eating dinner and certainly cut down the bickering from the oldest two since they weren't vying for attention from us but were wrapped up in Grandpa's replies.  We even tried jackfruit all together at K's insistence and rather liked it.

Before he came we managed to set up the pool and Leora sent an excited video to tell him to bring his swimsuit.  Unfortunately things were much colder than expected but Grandpa was a good sport and hopped in with everyone for a few minutes.

Birthday traditions are a must in our household.  There is the birthday breakfast (Thai mango rice and bacon) and the kiddos prepped  some homemade gifts and I pulled together a cake.  Later that evening dad treated us to a dinner out.









We had fun at the science center, making the most use of the last of our membership.




We found this little historic surprise right by the science center.  Who knew that the first LDS church was right on that site!
 
It really was a pleasure to have him visit and the kids talk a great deal about the next time we see him.  Thanks for coming out to the heat and making some great memories with us Grandpa!
 

Monday, April 2, 2018

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!



Saturday, March 31, 2018

Chess, Art, Books and Fun

Homeschooling with four munchkins is exhausting!  I've slowly been falling behind on my posts and at times I am tempted to give up on the blog but the delight my children have in looking over past pictures and recorded memories makes me persevere in these belated posts.  With so many events the recording may be brief but at least it will be done!

Bud has been in a homeschool chess clue that he absolutely loves.  We tried for year to put him in the schools clubs but the area we were in showed little no interest.  When we began to homeschool and heard of Coach Phil doing everything online we were a go.  It's been interesting to watch him learn to lose.  His first semester in he was lacking skill and foresight and lost most of his games.  I was afraid that this would discourage him but he pressed on, borrowing books from the library, doing extra lessons on chess.com.  Slowly he got better and won his first tournament.  Coach Phil actually lives just 20 min from us so he brought the trophy over personally and they played a game.  Bud was thrilled beyond measure since it motivated him to clean the house like he has never done before!



Bug loves art and had a hankering to go.  Thankfully they have a day free of charge on the second Saturdays of every month.  Along with it seeing the museum's exhibits they have art stations where the children can try their hand mimicking some of the work they see.  Pumpkin came along and had a blast doing her own artwork.  Bug enjoyed it too but was dying to spend some time gazing at the art around her but Punpkin was impatient to keep moving on.  The West Valley Homeschool have organized a field trip to their with docents to accompany us.  I have the three other munchkins farmed out and hope to go with my girl and fill her love of art.






Pizza Hut has a program for homeschoolers as they complete their personal reading goals the kids can earn a free personal pan pizza every month.  For Bud who devours books like candy I required him to read biographies or history.  He grumbled his complaints but was almost always drawn into the stories of characters like Benjamin Franklin or the horrors of Pompeii.


I love how Bubby snuggles with our respite Mary.

The coop continues to be lots of fun and when we had our spring break the kids missed their friends a great deal.







The Peoria library had a ladybug release day which we managed to attend along with hitting the free first day of spring promotionals.  Bubby was thrilled to eat ice cream two times a day and practically inhaled them.  The other kids enjoyed it more slowly as they watched the ladybugs we brought back home clear out of aphids.  They've checked almost every morning, hoping they'd stay.







AZ Fish and Game had an expo that we decided to attend.  Bud was particularly keen on doing some archery.  The girls loved the tent with all the skins of many animals with models of their skulls.






We found a deal on Groupon for a kids riding camp at the Witte Stable for Arabian horses.  We jumped on the deal and since our schedule is so open we took whatever day they had open.  Bug was ecstatic!  You could tell that a few of the kids came from wealthy families and were repeat visitors and while we can't afford to do this regularly, Bug treasured the experience and the memories.





While she was off having her fun I took the other three to a lunch out at Culvers!

Easter and all it's activities snuck up on us.  We tried a new method for coloring the eggs with rice and ended up with these unique eggs.  One was so beautiful they named it the galaxy egg.  The kids got a load of candy and played a few games at the Dolly Sanchez egg hunt.  Bubby's favorite activity was the hayride.






I'm so grateful for all the blessings that allow us all these memories.  I love my beautiful family!