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!

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.

The Courage and the Means

I love how flexible homeschooling is for us.  Some days you do just need to grab an apple and relax in bed!

Admittedly there have been plenty who have openly questioned whether or not I ought to homeschool Bubby.  I was hesitant myself initially but somehow when God speaks to your heart you know what is right and He gives you the courage and means to do it.  It has been just over a year since we began this with Bubby.  He went from being withdrawn into his own little world with no verbalizations to being happy, engaged and learning everything from his ABCs and his numbers through to 5.  He glows in so many undescribable ways.

Bubby with our latest respite worker, Stephanie.  Stephanie was actually his very first babysitter and she had to endure his cries and retreats into bed as soon as she came.  He's a LONG, LONG way from what it was so many years ago.  She was wonderful and caught on to tasks so quickly with him.

This was fairly recent.  It took me some time to slow down and give him the time to make the sounds for all the letters.  Previously he was moving his lips but that was all and one day he surprised us by doing nearly the whole alphabet.  My favorite is when he tries for W. (bubble-oo) This is now something he insists on singing with us daily and he is so proud of himself.  The delay in speaking lessens as we practice it and along with our Elmo ABC app I have confidence he will be writing a reading sooner than anyone thought possible a year ago.

Therapy was always intended to be the education of the caregiver while working with the individual with the vision of the care continuing in the home long after the therapist is gone.  Our music therapist, Ms Caroline put it so well, "You are his primary teacher, no matter what others may come in his life.  You are who we strive to support and when we do it right it carries to the individual's community."

Bubby's community and his security is his family.  With the security he's returned with a willingness to engage.  This isn't any 'structured' activity, it's what we do as we live.  It's the exchanges first thing in the morning as we greet each other and wrestle and snuggle in our bed.  Sometimes it's when we play, and yes, it's even when we fight!  These two have such a love hate relationship.  Pumpkin insists that he play with her.  She is at his level in so many ways and the competition between them helps.  She models so much for him and I would never have guessed so many years ago how much we needed her.


With our flexible schedule I can put in tons of sensory activities.  Sometimes we swing,do the trampoline,  an hour in the pool happens daily, spinning or dancing, jumping into bean bags - So much of this helps him out of his defense mode and puts him in a place to learn.  He surprised me the other day at therapies when he correctly identified his shapes, something we haven't worked on in ages.  He was taking in so much more than we realized.  There are times we've realized he likes to pretend he doesn't understand and it gets him giggling as we jump through figurative hoops to do what we want.  I think we need to award this kid with a psych degree!

Education is more than being on 'track' or meeting goals, it's really about understanding our world and finding a way to be a part of it.  We're so glad we're on this journey together!

Camping Adventure for Everyone

The years Kent spent as scoutmaster had fueled romantic images of camping in my children's minds.  I was able to avoid most trips either due to pregnancy of having a young enough child that would cry at unseemly hours and keep the neighbors and all of nature awake.  When our initial plans to visit friends in Vegas fell through the kids pushed for the first whole family campout.  Annually our congregation has a campout in the cool near Flagstaff.  I grudgingly agreed and proceeded to borrow the needed materials.  We told ourselves it would be an opportunity to see how Bubby would do in a totally new environment.  With that thought I think my adrenaline levels were in the red before we even arrived.

Autistic individuals crave routine and familiarity.  With the unknown there are so many possible sensory sources that could put them on the defensive and withdraw into their own world.  This video really helps explain it and is one of the many reasons we've chosen to homeschool Bubby.



We had been entertaining thoughts of purchasing a pop-up tent trailer to provide that familiarity while being able to travel on a budget but had yet to see what the little man might do when only nature surrounded him.  As soon as we arrived he was running off through the trees and up steep hills, only to beg us to carry him when he tired out.  Setting up camp and feeding kiddos happened as Kent and I alternated watching for this adventurous little guy.  The other three happily hung out with their peers  and enjoyed hikes, pine ball and all things in nature - sticks, bugs and squirrels.

Safely observing the fire that would not produce enough smores for this little girl to eat!

Once the tents were set up Bubby spent a considerable amount of time inside ours doing those things that were familiar and brought him comfort.  I napped by the door way, glad for some time to just sit.  Once he was rested he was at it again but was more anxious, hitting and gnawing on anything he could get his hands on.

I opted to sleep in a separate tent with Bubby so that the others might get a good night's sleep.  It was not the most comfortable arrangement but when he began his whimpering in his sleep, I was there to comfort him. We had considerable rain and at one point I  had to shift us so that the drops of rain wouldn't land like water torture on my forehead for the whole of the night.  I don't think that this 42yr old body can survive another night like that and I promptly informed Kent of it the next morning.   Bubby emerged with many sighs when he saw he wasn't magically transported back to the comfort of home but he took it all in stride.

Pumpkin had found a new 'best friend'!



Everyone did have some fun in the end, but it is clear to everyone that both Bubby and I won't come again until we have something more solid, familiar and comfortable to sleep in.  Given time I'm sure Bubby will adjust to a tent trailer but my body is much too use to the comforts of home!

Summer Fun

As time goes on I find myself finding great joy in reconnecting with old friends from days past.  There's something about seeing each other, our changes in our families and our growing children, it all reminds me of what is really important.  We had just such an opportunity when a friend from CA happened to be nearby after visiting the Tucson AZ temple open house.  I saw Anita almost 5 years ago when Bubby was 6 months old and we were headed out to our cruise vacation.   It was a brief meeting over a lunch (which I of course forgot to take pictures at!) which we had a great time catching up.  She was pregnant with her current youngest and I was still coping with the changes that Down Syndrome would bring our family.  She was so kind and encouraging.   Our most recent vacation in LA and Carlsbad conflicted with their schedule so when we chanced to find an open Sunday to meet we had to take it.

Anita had managed to gather a small group and I made friends along the way.  Her nanny from childhood, me, from her college years and a friend from her earlier married life.  (who is a fellow homeschooler which is still fun for me to find! I'm still such a newbie at this!)  There were 8 adults, twelve kids, good fun and lots of fun!

Marta's husband played the piano so beautifully for us.  It made me miss the days I could just lose myself in a song.

This was the only shot we got of all the kids.  Bubby was having no part in it whatsoever!!

What's better than seeing old friends and making new ones!

Other random happenings at the end of June included baking cookies outside in 115F weather.  We just set them outside on the picnic table and made estimates as to how long it would take and took notes every 20 minutes or so.  At the end of two hours they were not what I would call done, more dried out than anything, but the kids thought they tasted just fine!  I posted the results on Facebook and it inspired a few friends to try similar experiements it parked cars, or solar ovens.  Everything from cookies, to eggs and quesidillas were made.  It was a good way to make the heat bearable.

Taking apart our sunflowers and attempting to roast the seeds ourselves.  Not successful but the chickens we donated the seeds to enjoyed our harvest.

This little Pumpkin wants to be just like the big kids and when given the chance she joined Bug's judo class.  Sensei says she's a natural at it and she's proud that she has lessons just like her siblings.

Silly little girl, just bouncing with excitement to be in class!

On Friday's we attend a special needs storytime which the littlest two LOVE.  Bubby won't pay much attention to the book and activities but can't get enough of the songs we sing.  He's growing comfortable there and will interact with Ms. Jill who runs it.  Just recently he's shown a desire to stay and play a little longer which is encouraging and fun to see.  The wind tunnel was a big hit with the kids and he was careful to take turns and even let out a giggle or two.

Bubby and I had our own afternoon out one weekend.  DS Network held an activity about 40 mins from us at an indoor playground.  I'm always leery of attending these things since it's usually so loud and crowded but since it was just me and Bubbalicious I thought it would be good practice for him to deal with the crowds.  The ball pit was a HUGE hit with him and when the noise got to be too much we found a room where he could sort to his hearts content.  Perhaps one day he will stock groceries as a job!

After about an hour he didn't want to deal with everything so he dragged me to the door and clearly said, "Go!"  I honored his requested and we made it out nicely, walking out while holding hands, shoes on and with no screaming.  For a child with autism that was a big win for all of us.  I had to reward him by pulling into a nearby McDonalds where we split ice cream and French fries and he snuggled happily beside me.

He was worn out as evidenced by our drive home!

Park time!  I love how Pumpkin engages Bubby.  He doesn't want to be outdone by her!

Friends over to play and eat lunch

The crazy of the summer is nearly to an end.  So glad for these fun memories, family and friends.

Right There All Along!

Kids really are sponges sometimes.  You never know what they pick up on and most of the time you only find out in the most embarrassing moments when they regurgitate it out in public at a not so appropriate forum.  Personal experience, trust me!

If we underestimate neurotypical children, we are more guilty of doing so for disabled children.  I'm totally at fault for this despite the wonder that Bubby has been in my life.   Bubby is still considered non-verbal even though he has a few single words.  Many times these words need to be prompted for him to say it but he surprised me the other night and taught me a good lesson.

At church the kids learn songs each year related to the theme.  Because he has no voice of his own, I worked hard to find videos, learn and help him sign these songs.  He definitely has his favorites and Choose the Right is the one most often requested.  We've prompted him so that at the right time he is able to say 'choose' or 'right' (albeit a little delayed) which makes him happy.  We'd recently been learning a new song which talks about obedience to God.  The chorus is, "I will go,  I will do the things the Lord commands".  Pumpkin loves the song, it's got a catchy rhythms and melody so I was singing and signing it the other night when I decided to pause at 'go' and see Bubby's response.  Clear as can be he yelled, "Go!!"  Admittedly I was pretty proud, but it was a familiar word in his small repertoire so I moved on and paused at 'do'.  Lo and behold, he changed the shape of his lips and gave a breathy "do".  I was a little shocked.

There is something called receptive language and expressive language.  For example a stroke victim can understand everything they hear but their expressive language may no longer be there due to their injuries.  The word 'do' is not as concrete as 'go' and nothing Bubby has ever used before let alone been coached to use.  He has heard me sing the song plenty of times, but I have never paused to have him fill it it.  He was mentally singing along with me in order for him to know what was next.  Yes there was a delay before he said the word, but the delay was not any longer than typical (the time it takes for his brain to get his lips and tongue to move as he wants let along the breath to push out so the word can be heard) He was right there with me all along!

I had Bud film it the second time.  I wondered if it was a fluke, the words are rather similar, but sure enough he did again and has done it many times since.



It has made me wonder what I say about him in his hearing.  How often do I lower expectations, when is it reasonable to raise them and when do they become too high.  On the other hand, if I don't raise these expectations I'm doing him a disservice.  Frankly I know that when I don't raise expectations it's because it's harder - more work for me, more struggles but then there's the other side of the coin, there will be more triumphs and more joy.

I've always need to re-examine myself as a parent, my limited viewpoint and readjust to see more.  We all do for all our children but especially those with special needs.  As so many say, "Don't limit me!"

Five Fabulous Years!!!

This little man turns five!!!!  How can it have been five years since he came into our lives?  This little guy is my hero.  Truly.  You hear this phrase from special needs parents all the time and some take it to be an exaggerated statement, a PollyAnna phrase; but there is a raw honesty in the statement and perhaps the folllowing can explain why.  

Behind the silence he sees and knows so much more than he can convey.  He sees and knows everything is harder for him.  His little sister speaks with ease, is reciting her numbers and ABCs without a blink of an eye and easily interacting with others.  This daily comparision is always before him and yet he persists in trying, working and doing more.  We play a game of counting to three before jumping into our giant bean bags.  He mouths the words and when I push him a little more he struggles to get the sound to come but when he does his look is one of triumph!  He knows he's earned the high fives and knuckles.  He jumps into the bean bags knowing he OWNS his victory completely.

There are times I see clearly he is worn, feeling defeated for the day and simply done with the struggles.  He needs more hugs then, more laughter.  He fills this need often on his own, encouraging us to let go of the set back be silly for a moment. 

The following pictures we took after a family hike.  It is always hard on Bubby, his core and legs get such a workout with his low tone.  Perhaps he was tired to my attempts at a family selfie and partway he had to honk Keila's nose and play with her lips which had us all laughing. 

Got to get our daily 'spin' in!  This swing from IKEA was the best thing ever and while I lamented they didn't have the cushion to go inside it at the time of purchase, it turned out to be so much better without.

Yet another hike picture.  Slowly I'm figuring out this selfie business.

No matter the discouragement, he always, ALWAYS trys again.  In my book, a hero does what's hard and often unseen.   It's lonely work but there is an inner drive that keeps him at it. 

This was him at a second eye appointment.  He HATES anything medical so I came prepped with his weighted blanket, games and toys.  Thankfully we found that Midwestern University would allow us the room for the eye exam or the entire hour and a half.  It takes that long for him to relax up enough in a new environment for any decent exam.

Check out that bean bag mid throw!

He is a mentor to me.  When I'm tired, frustrated with the system, or struggling to understand new diagnosis, he inspires me to keep going on.  Sometimes I just lie on my bed, wanting to zone out on my phone.  I can hear his heavy footsteps, his odd little walk up the stairs and he climbs up on my back with a little giggle and a bouncy hug.  He pulls me out of that empty place where I always come out restless; we wrestle, tickle, jump on the bed and laugh and I find I am filled again.  If he can keep going then so can I and between our determination and faith in God we can figure things out.

                                  
Family fun at the Special Kids Day held annually in the McCormick Railroad park.  This little man was the happiest sticky boy ever!

The battles he's won will never be recorded except in my books and our family memory.  He has only the medals of achieving skills that comes easily to others.  But I do know that he doesn't take any of  these things for granted and because of all this I've learned that there is no simple life  But more importantly, that life can always be good

Our little professor sporting his new glasses from Specs4Us, a company with frames designed for those with DS. 

Hiking yet again!

I work hard on each kiddo's cake.  It's my way of saying how much I love them.  For Bubby, he loves anything citrus and all ice cream so I made him a lemon ice cream cake shaped in a basketball. I find it ironic that it would be our child with the lowest body tone that LOVES sports and especially basketball.  This was the cake's halfway point.

Kent took the day off and we went to Peter Piper's for his pizza lunch.  This kid has some real priorities when it comes to speech.  His first clear verbal word was 'go' (used most frequently when he's had enough church or therapy) and his second was 'pizza'.  'Popcorn', 'cookie' and 'apple' come in close behind.

The DSNetwork had a celebration for World Down Syndrome day on his actual birthday, so he enjoyed some train rides and bouncing on a massive bounce pad with Baba.

There was awesome music handpicked for our DS kiddos.  If he wasn't enjoying a snow cone or bouncing, then he was dancing his little heart out to some of his favorite songs.

We invited his teachers from church to come and share in the cake and sing him a Happy Birthday.  He withdrew a little when they showed up but as I held him to reassure him and we sang to him, he got the biggest grin on his face.  I think it was then he understood it was all for him.

There was something about his hand reaching out to grip mine, his smile as he glanced quickly into my eye.  It was the sweetest silent thanks a mother can get.

Bubby enjoyed the ice cream and the raspberries on the side.

So yes, things can be hard, but he is my hero because he has made me a better person.  He has taught me by example, by loving encouragement and genuine expressions of deep love.  I am better for him, because of him.  I treasure him and am grateful for these fabulous five years we have had together.  Happy Birthday Bubbalicious!!