Monday, October 31, 2016

Dory and Stitch - Autism

 We are so blessed to have so many different organizations here in Phoenix to help out families with Down Syndrome. This year we focused our fundraising activities on the Down Syndrome Network and baked sugar cookies to sell and raised around $100.  The other $100 came from spring rolls I made on two evenings. Other donations came from friends who helped us reach our goal of $600.  We are so grateful for the friends and family show us their love and support this way.

I was so proud of the oldest two who went door to door in our neighborhood selling cookies with the enthusiasm only the inexperienced and optimistic kids have.   Bug love was a little shy but she put herself out there and was so proud she helped a great cause.  Bud learned to slow down his speech and I can already see him a bright eyed missionary in the future.

Bubby tried baking on his own one day while I was upstairs folding laundry.  Apparently the baby locks on the cabinets aren't Bubby proof any more!!  We shall chalk this one up to sensory play!!  Another monkey see, monkey do - buttering bread.  I suppose buttering an entire loaf is more efficient!

I can't begin to tell how wonderful it has been to have such organizations around like Sharing Down Syndrome, Down Syndrome Network and Gigi's Playhouse.  They connect us to resources and other families and these interactions make a world of difference.  It is because of this that we've since learned that Down Syndrome can often come with other diagnosis, such as ADD or Autism.  For some time now I've wondered if some of the characteristics we see in Bubby are reflective of something more so in March we hope to talk to  a developmental pediatrician on an official diagnosis of autism.  Our wonderful therapists, sensitive to the strains of a special needs parent, have subtly hinted at this.  They know it takes time for a parent to process it, to mourn and to gather strength and information to act on the knowledge.  I wish I could say that I did not need that time, but it wouldn't be real or fair to deny it.  In the meantime we've begun the screening process for ABA or Behavioral Therapy and pray that the wait list moves quickly so we get services we are in need of.

A friend is a psychologist for a school and is sometimes placed in the position of telling parents these diagnosis.  She took some time to check in on me and I was grateful for her time and concern.  It was hard to admit that Bubbalicious was behind even on a Down Syndrome scale.  That the adorable smiles and giggles we as parents receive disappear behind a lock door as soon as ANYTHING unfamiliar  appears, eye contact is lost, and he retreats to a place that is not easily reached.  It took some time for me to realize that he is still the darling little man I love and will always love, that any additional diagnosis will only bring additional needed services.  It helped to share these thing honestly and openly.

The weight I feel is in learning more, understanding and applying another field of special needs to our busy lives feels heavy.  I have fought hard to have the balance we have now so that each child has their needs met (as much as any child can - because as parents if we are honest, we can never meet all their needs) and I feel like we've found that for the last few months.  It's been nice to sit on a plateau for a bit, but apparently it is time we climb again.  I'm not afraid.  The Lord has carried me through so much these last few years and I know He will carry me through more.  I am tired though - but there too I'm sure I will see His hand. 

Anywhere I go now the most common phrase I hear is, "You have your hands full!" and it reminds me of a shirt that says, "If you think my hands are full, you should see my heart!"  It is true, and still true even with the weight of what is coming.  Having Bubby has taught me how much I need others and somehow in the process they need me too BECAUSE of where I've been.  He has taught me to look beyond the outward appearences to the heart, just as the Lord does.  In so doing sometimes I even get a glimpse of how to communicate heart to heart.

Just today Bubby was throwing a fit like no other.  He's a solid kid and it's become rather painful when he kicks and bites.  He was frustrated at the difficulty of communicating what he wanted and at my lack of understanding.  He got most of his anger out and then I just held him.  I apologized for not understanding what he needed and said I was sorry he couldn't tell me more.  After a few minutes snuggling I offered him a cookie to soothe both our frustrated hearts and he smiled warmly and hugged me in return


He doesn't usually go for stuffed animals but he voluntarily hugged Dory and Stitch one day at the Mall.  He wouldn't do it with any other animal and in so many ways it fits.  He's a Stitch or Dory, just different enough that it's obvious.  On the other hand, there would be no finding of Nemo without Dory, no fuller life for Lilo without Stitch.  So it is for us.  I'm grateful for him in my life.  He adds to it in so many unexpected, beautiful ways. 

So begins our family journey into understanding autism.  Family, friendships, connections to others always move you along paths you never knew possible and since my experience thus far has been that it make me grow, learn and love more I will with faith and peace take my steps onto this path.

Thursday, October 27, 2016

October Fun

October is the month packed full of festivals and family activities.  With homeschooling we were able to have everyone join in on the fun.  The first was one hosted by the Desert Botanical Garden for special needs kids.

The first stop was the petting zoo.  Bubby has slowly become comfortable around other animals and the girls were in absolute heaven!  The baby chick was particularly fun as it snuggled into my warm hands, we just had to watch out that Pumpkin was extra gentle.

Doing these activities solo usually draws out my control issues for all four munchkins but everyone listened so well and was so helpful so it turned out to be awesome.

For the first time ever Bubby seemed to understand the concept of taking turns with other and trying out the games and activities.  Most of these festivals we attend are for the kids with special needs but I always felt like it was for my other kids until this day.  It warmed my heart, as tentative as he was with some unfamiliar activites that he tried them out.  He's coming out of his little shell, his quiet world  and it makes me so happy that he's truly THERE with us.

This little gal would hop out of the stroller to play her game and then hop right back in admiring her prize.  Such a helper!!

The next night we went to a Down Syndrome Network sponsored activity to meet Sean from 'Born This Way' the marshall of the parade.  It was so wonderful to meet a young man who is changing how people with DS are viewed.  He must have been tired with all the picture taking but he took the time to greet each one of us warmly, even showing off his latest phone to Kent.

The event was held at the I.D.E.A Museum in Mesa, focused on art and since the admission fee was waved for all those who fundraised for them we got to have some fun exploring.


The next day we opted to attend the Family Fun Fair hosted by the LDS Church for families with special needs.  The kids dressed up into their costumes so we could go eat, play more games and love on more animals.  Bud was Harry Potter, Bug was a 'ninja kitty', Pumpkin a butterfly and Bubby was our 'Cutie' Orange!

The first taste of cotton candy  in her life and she was in love!

It was 3 days straight of partying and fun from sun up to sun down.  We had worked hard for it, doing all our school work and chores so it was a well deserved break  but we all pretty much looked like this for the next two days! (Notice he's lying on the carpet, too tired to get into bed!)  Ah, the price of making memories!

Friday, October 21, 2016

Pumpkin is Two!!

 My bonus baby is not a baby anymore! Today is her birthday and I can't believe it's been two years!  We didn't know how much we needed her in our little family and we're so grateful she came and our lives would be missing so much!

Within those two years she has grown so much, she chatters constantly and if you listen carefully she's not just making sounds, she's  really trying to communicate and will screech at you if you don't listen! She's a little sponge and is counting past 20 as well as reciting her ABC's.  If you join in or interrupt her you're sure to get a scolding.

We were so blessed to have such a chill girl. She seems to understand that being the fourth and especially the one just under another with special needs takes a measure of patients. If  I have to chase our little escapee, she will patiently stand and wait for me or follow behind calling loudly for Bubby

She loves being with people and is already a social butterfly. If sister is playing with a friend she hops right in and can be heard screaming and laughing with all the big girls.  Going to nursery at church is one of her favorite things.  After having three kids that screamed when making the adjustment to the class I was so grateful to have one who would push my hand away as soon as she got to the door signaling it was time for me to leave so she could play with her friends.

Ms Kera gave us a darling means to do her hair, something we call 'panda ears!'

She loves to snuggle and everyone fights over being close to her at those times. Even Bubby who generally reserves his affection for Kent and I will hug her after nap time religiously.

For her birthday Kent took the day off to play and that day and all weekend we went to festivals and making memories as a family.  I made her 'ditty dat' cupcakes and shared them with her nursery leaders topped off with ice cream.

We had a blast!  She is such a monkey and keeps me on my toes but we need her desperately!  How we love you Pumpkin.

Tuesday, October 11, 2016

Girl's Trip!

Bug-love was over the moon at the prospect of time with only me.  I was thrilled at how much more relaxed I can be with only one child to play with!  We left early Friday and she was a helper all the way there.   I had picked out The Secret Garden for us to listen to on CD as we drove and she loved it so much it was hard to get her out of the car at times but once we got there her first choice was the beach.

Got the lovely sunset behind us while she got soaked chasing after sanddollars washed in by the tide.

First thing in the morning it was back to the beach.  All sorts of sea weed to play with!

Our first major outing  was to Sea World, someplace I had never been.  She LOVED all the animals, especially the ones she could pet.  We caught a few shows and rides but she couldn't get enough of petting the sting rays, sharks, horseshoe crabs.  We even got the chance to pet a dolphin!.

This was the little dolphin we got to pet and Keila fed an ice chip to.  Totally unexpected memorable moment!

Petting all the lovely animals!  The sting rays really were velvety and silky!

Got totally soaked on one of the rides!!  We got the meal plan there and half the fun for the girl was deciding on which dessert was next on her list.  They also had a special weekend trick or treat as you  walked through the park providing us with all the candy we would need on the ride home!

Her favorite pink fishies!

The following day we took it easy since our feet were aching for all the walking at Sea World.   Bug's big request was to pet some more animals so I opted to go to Cabrillo Monument to tide pool.  We did manage to find some sea anenomes that had her giggling as they tickled her fingers with their tiny stingers.

The tide was coming in so we couldn't stay long but she still wanted to pet those sea animals.  (Kent can tell stories of me being just the same way!) so I took her to the Birch Aquarium up in La Jolla where their makeshift tidepool allowered her to touch sea cucumbers, lobster and sea urchins in addition to the beloved sea anenomes.  She spent so much time there and gleaned so much from the volunteers that they said she should be make a honorary volunteer especially as she taught any children around her.

The trip ended with a sushi dinner as well.  (First we pet the fish and then we eat the fish!!!)  Such a happy girl!