Monday, June 4, 2018

Coop party, Anne Frank Exhibit and so much more!

Life is packed with activities and learning.  Im starting to fall behind on all posting all our activiites so here comes the deluge!

The homeschool coop has become one of Pumpkin's absolutely favorite!  We've done so many activities, from making bird feeders, working on parts of speech to math games.  I am often amazed by what a few families committed can do for a group of kids.

We ended out homeschool coop with a water fun day, the pool was open, we made ice cream in a bag.  We hope to start all this fun back up in the fall with the same group of people.

When we heard there was an Anne Frank exhibit to be brought to Phoenix I made sure we took time to read her life story.  Kent took some time off so we could go as a family.  It was a good experience for the oldest two and lead to discussions on bullying. I hope that these discussion will translate into life experience and decisions to open their minds to understanding others.

Phoenix had a free fishing day and since this is one of those activities that Bug has had on her bucket list, we made sure to go.  All were dreaming of making that big catch but in the end they could barely stand the bait on the hook!  All the same they had fun and we were able to enjoy the last of the cool weather in April.

On one of her morning mile runs Bug spotted this little guy and was determined to rescue it.  Having had some experience in the past we got some boiled egg and dog food that we diluted and mashed into a paste to feed.  We kept Stripey (yes, she named him as quick as she could despite my discouragment and fear that the little fellow wouldn't survive the night)  We kept him in a little box with a heat pack and fed him as often as we could.  To my surprise he survived the night and woke chirping loudly his hunger.  We showed him off at the coop where the children were quietly facinated with this little life.  That afternoon we had a tearful goodbye as we placed Stripey with Liberty Wildlife who were equiped to have other 'adoptive' mother birds to help our little guy become independant.  I suspect every sparrow we see will make us think of Stripey.

Only two months later Bug found this abandoned quail egg.  She was determined to keep it warm and thankfully a lady in our congregation had an incubator.  We brought it over to Kathleen Moody who said she'd do her best to see if it was still viable.  In the meantime we go to see plenty of chickens, cats and even two peacocks.

With all the heat we've seek out all the water we can to keep cool.  We tried out a splash pad at Pioneer park and had a blast.  It made it easy to go back the following week for the last West Valley Homeschool Park Day.  The kids had a blast and made some new friends we hope to see soon.

A birthday celebrations with friends had us trying out this splash pad in Anthem.  I was thrilled to it had a gate which kept our wandering Bubby safe and eased my stress levels. Bud was thrilled to have water guns!

Other birthday celebrations with friends.

We have a pass once again to Wet'n Wild.  One partifular saturday morning they had mermaids in the wave pool.  Pumpkin was completely enamored by them and followed them everywhere.  She asn't the only one and the pirates there seemed to act like body guard to the girls.  One even swam out and flipped in the water so her 'fin' made a splash.

We've also begun a weekly art class with some friends.  It's easy to play host to these well thought out lessons and the kids have loved the little extra playtime they get with friends.

Somehow amidst all this we fit in weekly therapies and library story times.  I'm grateful for our crew that keeps our lives full and fun

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!