At 42 Degrees

At 42 Degrees

Thursday, December 25, 2014

Connecting For Christmas

Isaac experiences the world in a different way and he makes sure YOU do too,...that includes holidays, and it can be a lot to wrap your mind around as we are nearly three years into Isaac's diagnosis for Apraxia, and into our second year for confirmed Autism,...and the learning curve has been steeper than expected especially in regard to holidays,...because there is no way to know exactly how much Isaac understands,...just hints, and clues,...and fragments of a comprehension puzzle. 


With clearly a high intelligence, we are assuming Isaac understand much more than he is able to express,...but it can be daunting to purchase presents having no idea how they will be receive, or IF they will be receive or even acknowledged,...and that can really tug at a mama's heart,...we love our little guy so much and we want to celebrate this joyous time with him,...but we have to figure this Autism Angle out,...and this year,...praise the LORD,...I think we did,...


For starters it doesn't help that Isaac was not feeling 100%,...his icky cold is lingering and he wasn't that enthused with attending a Christmas party,...although he did appropriately play with some other children for a short time,...but then he climbed into Teddy's lap,...and was 'done' for the evening to the point of eventually taking my hand and then his Daddy's hand and leading us to the door, 'Go!' -- too loud, too chaotic, and too much Christmasy stuff going on,...as I observed Isaac is NOT a fan of opening presents,...perhaps it disrupts his sense of order, or the sensory sensations of the paper ripping,...whatever it is,...he's NOT a fan,...thank you very much,...he'd rather go to the dentist than have to open a present. 

So once home, as we open our presents on Christmas Eve,...I quietly opened Isaac's presents and scattered them around the room for him to find. SUCCESS!!!! Isaac liked this method,...surprises every time he came into the living room,...and nothing he received was more fascinating than this little wooden play food set,...with velcro,...so you can 'play-cut' the food,...and serve it to Mama,...and then let her take a turn, and Mama serves Isaac,...and oh-that-wooden-food-is-sooooo-delicious,...

"Yum-Yum" says Isaac,...intent on cutting a hotdog,...and you know it's a carrot, and I know it's a carrot, but Isaac insists that it is an orange hotdog and who am I to interfere with pretend play? Not me,...I was eating orange pretend hotdogs up to midnight,...but I went to bed with a joyful heart, so thrilled to connect with my little guy,...it means so much to us,...


Non-electronic device fascination is a total SCORE!!!!


And you can count the food too,...the cucumber cuts into "FOUR" pieces, says Isaac.


How beloved was this food-set?
Isaac took it to bed with him,...and no doubt had sweet dreams 
of preparing a pretend Christmas dinner!!!



Christmas morning,...and Isaac is back to work,...that food MUST be chopped. 


So much food,...the choices are a delight to Isaac,...


Only we have to pause in our play for the ending of Toy Story 3,....


Hanging out Christmas morning with Isaac,....SWEET!!!!


End of the show,...no problem,...Isaac totally knows how to operate the DVR,...


Then back to work,...


Connecting with Isaac is the greatest Christmas gift for us this year,....

Our little guy experiences the world in a different way,...and he makes sure YOU do too,
and we are learning together how to live, and grow, and celebrate,...

MERRY CHRISTMAS

Until I post again,...may God bless you!

Tuesday, December 23, 2014

Croup For Christmas

So far Isaac is 2-2 for Christmas Croup,...our sweet little guy had croup for Christmas last year as well,...but hopefully Isaac's icky cough will clear completely by Christmas Day as he is zooming around the house this morning,...perhaps not with his usual high-speed, super sonic energy, but with more zip than he's had for the past few days,...


No Santa Isaac pictures are being tolerated this year,...one: he doesn't feel well,...two: he doesn't want his picture taken with a santa hat,...'Come on, Mama,...I am four',...says his expression,...but our little guy is sooooo cute when he puts on that santa hat while playing,...I can't help trying,...maybe better luck next year. 



Before Isaac's sniffles started he was able to help his big brother Michael celebrate earning a bachelor degree,...that's two older brothers out of college before Isaac even starts kindergarten!!!

We're so proud of Michael's achievement,...and we were THRILLED with Isaac's conduct during the lonnnnnnng graduation ceremony. Did Isaac sit still in his seat? Pleassssssse, what four year old does, much less one on the spectrum? But Isaac was very quiet and non distracting during the ceremony with his tablet, and he took lots of adventure walks around the stadium with big brother Teddy,...and never once seemed to mind the the huge crowds or noise until after the graduation, and it was kinda crazy with zillions of folks trying to find their graduates,...but Teddy was on hand to provide transportation assistance. 


After the graduation ceremony we had lunch at a popular restaurant, so popular our wait for a table was 45 minutes long, but again, Isaac was a doll,...and happily played around our outdoor waiting area, and once seated,...Isaac ate, and ate, and ate, and never once wiggled, even a bit,....


This is our second Christmas with Isaac's diagnoses,...and we are still finding that holidays are hard with Apraxia and Autism,....there is no way to sugar-coat the disconnect between Isaac's comprehension and traditional traditions,...which seem pretty meaningless from his reaction,...tree or no tree,...doesn't really make a difference,....packages with ribbons and bows and gift bags piled high,....no interest,...telling the Christmas story,....Isaac listens, which is NEW for this year, but no feedback,...and that is hard to wrap your heart and mind around,...but we love this little guy so much,...we try everything and anything to help him connect,...to the point of disconnecting ourselves from traditions 'we' think are important,...because Isaac has a gift of crystalizing everything into the most essential,...and decorations, and gifts, or holiday food,...isn't what Christmas is about,...it's about celebrating God's gift,...Jesus Christ,...

Ralph Waldo Emerson said, "The greatest gift is a portion of thyself' -- and Isaac has that sentiment nailed, 365 days of the year,...for our little guy is completely undiluted,...his affection and love is real and genuine,...and selflessly offered, "Hug" - says Isaac with a hug, "Kiss" says Isaac with a kiss, "Hi" says Isaac because he's so very glad to see you,....nothing is pat, nothing is rote, or merely form that polite society decrees,...every smile, every hug, every effort to communicate is a portion of our little guy,...and for us that is the greatest gift,...




Isaac likes birthday cakes,...and oh yes,...we'll be celebrating Jesus's birthday with a cake and candles, which no doubt Isaac will have fun blowing out,...but I also made these little ones for Isaac,....not that he'll eat them,...pleassse I know that's not happening,...but I made them to celebrate the holidays and so Isaac can have the fun of saying, 'birthday cake' - and perhaps he'll marvel that they are so teeny,...probably not, but that is not stopping us from trying,...again, and again, and again, to help our little guy find a deeper connection with the holiday season,...'cause Jesus is the reason for the season,...



Last year pix of Santa Isaac,...he's a year older now,...and has made sooooooo much progress verbally and socially,....and this year Isaac can say, "Merry Christmas," - or "Mer-ree Tmas" - although most of the time when I ask Isaac if he can say Merry Christmas,.....he merely answers, "Yes!"

Until I post again,...may God bless and keep you!

Friday, December 12, 2014

Answered Prayers,...

 It is not hard for Isaac to find a cozy spot in the evening,...especially when it is bitterly cold, and when my husband recently brought this beanbag home for our basement man-cave, Isaac had other ideas and promptly wrapped himself into a glowingly cozy cubby,...content and cute,...and so reminiscent of Isaac's introduction to the world,...I was taken aback when I saw the photos.



As a newborn, Isaac had severe jaundice due to very high bilirubin levels. Here is Isaac during his second night at home looking like a babe out of a star-trek episode in his eerily glowing cradle. 



This picture was taken only a few hours before our precious little guy had a breathing crisis and had to be rushed to the Children's Hospital in the wee hours of the morning. Scary, scary, scary,...and heartbreaking when Isaac was whisk away to the NICU (newborn intensive care unit), and my husband and I found ourselves shell-shocked and wandering through the eerily still corridors with an empty carseat. And to be frank, I don't even remember how we ended up in the cafeteria, but I do know when my husband set that empty carseat on the table,...we both broke down and bitterly wept tears of despair,...our little miracle baby had just been given to us,...his little life was on the line, and we couldn't bear the thought of him being taken away,...

As people of faith, my husband and I turned to our faith,...and cried out with desperate prayers for healing for our little one,...we just wanted him to survive,...we never asked for him to be perfect or typical,...just alive,...and our prayers were answered,...a thousand fold,...for Isaac survived his crisis,...and now nearly five years later,... he is so vibrantly alive!!!!


That everyone in the world could be as happy as Isaac,...he seemingly finds joy in everything!


And I do mean everything,...as I was uploading these pictures, Isaac visited me in my office and I happened to have a piece of bubble wrap from an airmailed package. I squeezed the bubble wrap to make some POP,...and then handed the plastic to Isaac,...his eyes lit up and in an awed tone, he breathed, "WOW!!!!" 


"WOW!!!" - is what I think when I think of our answered prayers,...we are so grateful to have the honor to have Isaac in our lives,...life is not dull, by no means, when Isaac is around,...his little spirit glows from within like the happy little person he is,...content to be himself and love others as their-selves,...he's not asking us to be perfect, or typical, or anything other than to be in his vibrant little life. 

And so we are,....thank you LORD for answered prayers!!!

Until I post again,...may God bless and keep you!

Friday, December 5, 2014

One Of Those Days,...

Today started off as One Of Those Days,...Isaac was running late to school, or rather I was running a little late getting Isaac to school,...we made it to school in good time, but we had to rush,...and rushing with a child on the spectrum can be fraught with peril,...but Isaac did get to school, only as a rushing-result, I ended up with a massive headache, which wasn't helped by the state of our home - clutter-city - and my attempts to declutter were agonizingly slow,...and madness, with a massive headache, I attempted to put up a new window blind,...what was I thinking? 

Amidst the chaos the door-bell rings,...it was FedX, and I was frantically trying to remember what I may or may not have ordered, because I don't remember ordering ANYTHING,...but the long, and suspiciously narrow box was for me,...and my eyes were ROUND with wonder when I opened it to find TWO DOZEN red roses,...as you see,...splendidly beautiful red roses,...



Now,...my husband is an absolutely sweetie,...we're 32 years strong and still wildly in love with one another, and delivered flowers aren't unknown to me,...but the only hitch,...it's not our anniversary nor is it my birthday,...and when I called my hubby to 'thank' - I drew a blank, "....ahhhhh" - from my husband, 'cause the flowers weren't from him,...and he's got too much ethics to claim credit where credit isn't due,...also he was a 'tad' curious who was sending his wife,...gorgeous, gorgeous roses,...

So was I? Because it took some digging to find a card,...and when I did,...I quite frankly,...broke down sobbing,...so overwhelmed,...because the flowers are from Kulturecity: (http://www.kulturecity.org),...a local autism charity,...and the occasion was nothing more than a HUGE HUG of support and encouragement to this mother of a special needs child,...WOW,...WOW,...WOW!!!!!


Who gets red roses out of the blue? This is like fairy-tale stuff,...and I suspect that's how the fine folks at Kutlturecity wanted their offering to be taken,...and it is so hard to express exactly how touched I am for their care and concern,....because one of the harder aspects of autism is a sense of isolation,...as typical 'social' activities can be quite complicated,...so any and all support is so welcome and appreciated,...and such thoughtfulness and such kindness to send flowers to a caregiver,...just BECAUSE,...they truly care about my child and me,...and of course my guys too,...but those flowers had mine name on them,...boy was today a day when I needed an encouraging lift,...and did I ever get one!!!!!


Trying to pay it forward,...I couldn't resist taking some of the roses to Isaac's school to share the joy,...because Isaac's teachers and aides and therapist are true heroes in my book,...these individuals have chose to spend their professional lives helping special needs children,...and their patience, and professionalism and humor, because hello,...humor is needed when working with Isaac and some of his challenging challenges,...all those aspects are truly inspirational,...


A HUGE,...thank you to Kulturecity for their kindness and support,...and THANK YOU to everyone who supports special needs charities,...this is the end game of your generosity,...special needs families being encouraged and helped along their journey,....

Until I post again,...may God bless and keep you!

Tuesday, December 2, 2014

Attributes

Milestone passed last night,...and if I wasn't laughing so hilariously hard I would have utterly cried when Isaac said to me, "Silly Mama."

Silly? Me? You bet, it is THE best way to reach my little guy and help him engage when social engagements seem confusing or apraxia makes speech difficult,...so Isaac nailed it,...Mama's silly, and we were being very silly last night having a giggle-fest,...which means chase and tag and tickling and lots and lots of giggling.

But it was Isaac's use of an attribute which totally blew me away,...because it is his very first observation toward another's behavior. Mama was being silly, of course, Isaac was too, and we do try to narrate to Isaac,...state-of-being: 'sad'-'tired'-'sick'-'frustrated'- this one usually when Isaac has to have his hair brushed, and of course, 'happy'-'excited'-and 'SILLY' - no surprise there as most four year olds are habitually silly and Isaac is no exception.

The gist,...Isaac thinks I am silly,...of course I had an inkling he did,...as "Tickle, Mama," or "Giggle, Mama," are frequent requests as we do giggle, a lot, together. But the proof of progress is so heart warming as there are times when behavior norms seems stuck in static,...but lately Isaac's been trying to verbally communicate his impressions of the world within the means of his limited vocabulary, which means, at the moment, Isaac finds everything to be, "Cute!"

Inflection doesn't translate very well upon a digital page, but believe me, Isaac can inflect that little word, 'cute' into a thousand different ways,....and these days everything is CUte, or cute, or Cuuuute,...such as puppies, and trees, and pizzas,...it's all soooooo cute!!!

Of course the cuteness factor of Isaac observing everything to be cute,...is high, and again so encouraging to see our little guy making verbal observations, because Isaac is a master at non-verbal communication and can communicate the majesty of an enormous pine tree just by his expression, and body language, aided by his tone and infection into the single word, "Tree!" - instantly you know Isaac thinks that is a BIG tree,...

"WOW," is another means of attribute Isaac has been utilizing appropriately to express his awe, such as over the holiday weekend his impression of a department store, toy department, "WOW!" "Look at THAT!" "WOW"

It is encouraging that these attributes seem to spring spontaneously from Isaac's impressions,...it is his thoughts,...and that might sound kinda like a 'duh' - but being on the spectrum seems to hampers Isaac's ability to express in his own creative voice, as Isaac routinely uses echolianian techniques, aka: verbatim dialog from animated movies,...and to give him his due Isaac uses snatches of dialog in a creative 'metaphor' manner to express what he wants to say,...such as when I was holiday cooking the other day and the kitchen smelled delicious,...Isaac couldn't tell me so,...instead he tugged my arm to get my attention,...deeply inhaled and said, with exact intonation from the movie Frozen, "Chocolaaaate!" - and no I wasn't cooking anything with chocolate, but I knew Isaac was trying to tell me the kitchen smelled YUMMY!

For us, there are still so many questions about how Isaac's development will play-out,...such as will we ever be able to have a conversation? Will Isaac ever be able to tell me, why he thinks I am so silly? Will he ever be able to verbally request that Mama make something, "Chocolaaaate!" Or tell me exactly what is so 'cute' about pizza,...I mean puppies and perhaps saplings are self-explanatory...but pizza, Isaac?

Still,...I never thought to hear Isaac use a personal attribute, "Silly Mama," - was sooooo appropriately used,...as we were both being very silly last night.


Being silly is one of Isaac's most favorite state of being in the world,...and as such being denoted as a Silly Mama has to be one of the highest compliments I've ever received in my life!

Until I post again,...May God bless and keep you!