At 42 Degrees

At 42 Degrees

Monday, March 31, 2014

Gotta Love A Selfie,...

Leonardo Da Vinci, Michelangelo, Van Gogh,....and Isaac,...self-aware men capturing their own images,...Isaac being in the 21st century via an iPhone,...one morning complete with giggles. 


















Every night before he goes to sleep Isaac sign/says his prayers: "Thank you, God, Amen!"  - and then he practices an important sentence: "My name Issssck."  The vocals for neither come easily, but Isaac speaks the best he can with great enthusiasm,...because he was aptly named as Isaac = laughter,...and our little guy is filled with joy and blessed with a very expressive little face - helps a lot in nonverbal communication. 

Imitation and expressive verbal output for Isaac have shot up exponentially in the past few weeks,...with a few caveats,...Autism and Apraxia aren't going to let our little guy off scotch free,...it seems,...the social aspect of communication - such as the give and take of a conversation - have some serious lapses, if you ask Isaac if he would like a cookie, when he doesn't want a cookie, he may answer with a rendition of the alphabet, or blast off count down, or some other type creative dodge, instead of being able to say: "No, thanks."

Still verbal output is verbal output and for Apraxia motor processing our little guy can't get too much practice speaking even at times if he sounds like he's speaking out of Dr. Seuss,...and a lot of it is pretty cute, like Isaac's dramatically signed and said, "I don't know," or "Oh my!" -- and rapidly-like-super-sonically said, "Whatdidhedo?"

 Also, Isaac is still singing!!!!!

Not Twinkle Twinkle anymore - that's old hat,...now Isaac sings with the movie Frozen and he belts out: Let It Go,...with so much gusto,...you have to stop and ask, "Does this child really have a severe developmental speech disorder?" - Unfortunately the answer is still, yes,...but progress is progress and Karaoke in our living room is music to our hearts,...self-expression like a selfie,...gotta love it!!!

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




















Thursday, March 27, 2014

Thumbs up,....


Putting in a vegetable garden with Isaac, but what does he think about all the changes in our backyard?




Lots of moving and hauling and digging and stacking and watering,.....



Isaac LOVES it!!!!


Dirt, mud, water????....Bring it on!!!!



Of course, we have to take breaks to play,...



And borrow Mommy's gloves,...


Isaac likes gloves,...it nullifies the icky sensory stuff!!!


Food and water are essential not just for the plants,....


Plants,...well watered by Isaac


Our first vegetable bed,...not glamorous, but it will get the job done. 



As for Isaac,...he gives gardening a thumbs up!!!!


This week is Spring Break for Isaac,...no preschool, but that's fine, we've been sooooo busy trying to get a vegetable garden started,...and for the record,...gardening with a preschooler is verrrrrry slow,...but no surprise there,...so we just go with the flow,...and Isaac's flow has been fantastic: verbal, social and behavior.

Maybe its all the fresh air and sunshine,...because Isaac's verbal output is growing by leaps and bounds,...and his social imitation is fantastic,...especially this evening when I was planting the garden bed,...Isaac was by my side - imitating my every move as he planted rocks and sticks,...and golly I'd wish they'd grow just because he was sooooo cute and soooo earnest,...as if those rocks were seeds. 

Soon as we can,...we're going to be planting some radishes and carrots and other child friendly veggies,...for Isaac to harvest and what fun that will be!!! 

Thumbs up for all this good interaction. It's wonderful to know that Isaac really loves being outside and even helping with all the chores,...especially watering,...

Believe me, all our plants will be well hydrated this summer,...and this afternoon when we were adding the dirt to the bed,...Isaac helped by throwing in handfuls of sand,...like it was pixie-dust,...and perhaps that sand will make our garden grown

Who knows? We're just glad for the one-on-one time with our little guy and that he is so receptive,...perhaps nature is the best therapy!!!

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














Wednesday, March 26, 2014

More Birthday Cake,....

Big Brother Michael's 23rd birthday this past weekend,...and Isaac is getting a hang of this birthday party business,...when the gift bags came out his eyes lit up,...but none of the presents - shirts and stuff like that - were very interesting.

But decorating another birthday cake? Now that's Isaac's forte and he did a great job directing me where to stick in the candles,...and he would have put the candles in himself, but his finger accidentally came in contact with that chocolate icing and that was jussssssst too icky for words, besides Isaac's going to make a great CEO,...he's all about delegation. 

And motivation,...because Isaac, again, knew the birthday cake wasn't for him,...he's looking at Michael,...waiting on us to finish singing "Happy Birthday" 


Then,...Isaac helped to blow out the birthday candles,...'cause what else are little brother's for?


Joy in the moment!!!!!


Very encouraging to see Isaac help celebrate Michael's birthday,...with the excitement over the gift bags,...and Isaac was really, really excited,...and his enthusiasm over decorating the birthday cake,...even though sensory overload was a tad involved,...and his love for his brother:

"Hapa birda Mi-chael!"
 -- three words, pretty plain, totally appropriate,...best birthday present ever!!!


---------------------------------------------------------------------------------------------------------------------

Spring Break here,...so no preschool for Isaac this week,...but that's OK,...Isaac's been very busy helping us put in a vegetable garden,...which means lots and lots of trips to Lowes,...where the outside employees already recognize Isaac, know he signs,...and happily greet him with a:
"Hey Buddy back again?"

Also can you tell that Isaac,...really, really, really likes this water fountain?
hint: he's stock still!!!!


And no,...it is not coming home with us,...just like every birthday cake is not yours,
neither is every uber-cool water fountain,.
although the odds of us creating a custom-made water feature for Isaac 
in the back yard this summer are pretty high. 

Gardening with a preschooler is a verrrrrrrrry slow process,...especially when you are starting from scratch,...but that's OK,...the joy is in the process and surely we'll get the garden beds finished before too much longer.

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







Friday, March 21, 2014

On Faith,...


This past week, I was asked to write about our experiences with the Church of the Highland's Haven Ministry. As a people of faith, church and church community are important to us and the following is a testimony to how the Haven Ministry has been such a positive force in our lives. This is our story,...





Haven Ministry and Us – a Testimony
March 15, 2014





            Our formal introduction to the special needs community took place two years ago in 2012, when our third son, Isaac (two years old) was diagnosed with Apraxia, a rare motor processing speech disorder, and flagged for suspected Autism.
            Needless to say it was a very bewildering and stressful time for our family with our precious child unable to speak, unable to follow directions and social cues, and unable to keep his hyperactivity and sensory overloads under control in public settings, while we scrambled to arrange Early Intervention and therapies – speech and behavioral, and to learn all we could about the special needs community.
            Let me give a shout out to our state’s Early Intervention Program, the professionals were kind, caring and very punctual about getting Isaac evaluated and services provided. Also: The Bell Center with their early intervention classes which were instrumental in getting our little guy off to a good start toward classroom structure with one-on-one instruction. At present, Isaac is being serviced by The Public School’s Special Needs Preschool Program, and again our family is grateful to the kind and professional special needs teachers, aides and therapists working with him on his challenges and helping him to meet his academic goals such as sitting still for a story, which is a skill that is very difficult for our four year old son, who was diagnosed in 2013 with Atypical Autism: PDD-NOS – Pervasive Developmental Disorder – Not Otherwise Specified.
            It is important to note that Isaac’s Autism is Atypical and that Apraxia does not affect Isaac’s hearing because it makes his disabilities not readily noticeable and that does affect how Isaac is perceived by the community at large, or in other words it makes it very easy for our child’s hyperactivity or inattention, or lack of speech to be misunderstood, for he looks like a typical four year old, and quite naturally others expect Isaac to conduct himself like a typical four year old, but that’s not only unrealistic, it is impossible.
            The combined diagnosis of Apraxia and Autism have sent our family through a bewildering labyrinth of unfamiliar medical terms, therapies and research trying to get up to speed on disorders that even professionals cannot fully explain. Our Isaac is not only a charming little individual, chock full of personality – he is precocious and exceptionally bright, learning the entire alphabet – in order – with each phonic sound for each letter – and each sign language sign for each letter by the time he was three years old,…yet,…Isaac at four years old cannot readily answer: “What is your name?” – very bewildering and heartbreaking.

Enter Haven’s Ministry. As people of faith being part of a church community is very important to us. However having a special needs child changes the game plan, not just for the rhythm of daily home life, but also for social interaction outside the home. Autism is a misunderstood disorder, which we have discovered very often leads to isolation for the child and the child’s family. It’s tough, I won’t sugar coat it. It hurts to know that your child is not able to participate in activities, such as story time at the local library or pee-wee sports. And then there is church.
It is nerve-wracking not to mention heartbreaking to take your special needs, nonverbal child to church and leaving them with nursery volunteers, who wave dismissive hands and tell you hyperbole tales about someone’s uncle’s third cousin’s nephew who didn’t start speaking until he was five years old, but now is in the state senate, and that there is nothing medically wrong with your child, he just needs more discipline and that it is utterly ridiculous for us to be wasting our time teaching him sign language – because no one will ever be able communicate with him.  Or even worse having a nursery volunteer confess that she was screaming at your child, because he would not sit in a chair like the other ‘good’ children. Cringe worthy experiences that make you feel like your child is merely tolerated in the sacrosanct portals, and not welcome.
Even in the best circumstances the church environment is not safe for special needs children, for too often only one or two adults, or even teens and preteens are available to watch more than a dozen children, including your nonverbal-hyperactive child, your fearless nonverbal-hyperactive child, your fearless, prone to wander, nonverbal-hyperactive child, and instead of worshipping – you are racked with fear – and praying for your child’s safety – disturbing the service to sneak away and check on your child – and too often – having to leave the church service early with your sensory-overloaded child.
What is a family of faith to do?
First, we cast no stones, unless you are intimately involved in the special needs community – as a family, teacher, doctor, therapist, you have no conception what a special needs child, nor their family goes through – on a day to day basis.
However it is surprising that being in the Bible Belt of the Deep South, that there is not a greater outreach to the special needs community by church ministries. We are the forgotten, but our children are not angels, nor are we, the parents, saints. We need spiritual community, we need worship, even more so than many typical families, for we live with life and death, if not our own child on the brink, then the mother across the waiting room, or a classmate: medical issues are pressing and bewildering and expensive and stressful. We are grieved for the loss of what our children are not capable to experience – no tee-ball for us, we are still working on potty training – hopeful that our child will be fully trained before elementary school begins. And there is the uncertain future. If anyone needs prayers, hugs, support and unconditional love and acceptance – it is special needs families.
Some churches do try to be inclusive, I don’t want to suggest they don’t and that in some congregations the special needs members are not cherished, but it is sadly the exception, not the rule, and searching families find only a vast void.  There is a great need for special needs inclusion, but not even the largest church in our area has a special needs ministry and when I spoke with a director of the children’s ministry because we met by happenstance and she was extolling the virtues of their new children’s wing and I mentioned the needs of special needs children, she gasped with embarrassment and sputtered, “We’re,…just,…just not equipped for those needs.”  - But if the largest church in our area is not equipped to meet the spiritual needs of special needs children, nor has any interest in becoming equipped aside from following government regulations for building accessibility: what does that mean for my child and other special needs children,…who are among: the very least of the least of these,…
However there is a higher power, and the LORD is very aware of our children’s needs, and there is hope, because of individuals like Ms. Stephanie who is the Haven’s Coach, at Church of the Highlands at our local Campus. The story of how our family found its way to Church of the Highlands and the Havens ministry began 2012 in a speech pathologist waiting room, when another mother and I began to speak about spiritual matters, and she glowingly mentioned the Havens ministry – which I was aware of, because besides the Havens there are at least two large churches in the greater Birmingham area that do have vibrant special needs ministries and outreach, but they like Church of the Highlands’s locations are at least forty minutes away from our home – and gasoline is not cheap, these days, nor are doctor’s fees, speech therapy fees,…in short it wasn’t feasible, and our family either worshiped at home, or took turns attending church, or bit our nails during service with Isaac in the nursery.
Then Church of the Highland’s a campus open in our area, in February of 2013, and by divine intervention, which would take too long to chronicle, but the LORD directed our path to attend the new campus in April of 2013 – a huge step of faith for us,…because we were taking our nonverbal child, to a new church, with new individuals, who did not know us, or our child, and we were frankly prepared to walk in the door and be disappointed by tactlessly, tactful individuals who were oh-so delighted we were visiting with our child,….whom they would gingerly appraise and pat on the head,…and tolerate the little dear,…because that is the Christian and political correct thing to do.
WOW,…were my husband and I ever overwhelmed by our first experience at Church of the Highlands and the Havens Ministry. I was shaking in trepidation, my husband was shaking in trepidation when we approached the children’s check in and hesitantly and even apologetically mentioned our child had special needs. Immediately Ms. Stephanie was on hand and not only was she genuinely delighted to meet us and Isaac, she was one of the few individuals who actually understood what Apraxia was and what in entailed, which was very impressive because it is a very rare disorder, but even more impressive was that she immediately began to sign to Isaac: Hi, How are you? We’re glad you’re here.
Then Ms. Stephanie began to explain to us how Isaac would be assigned a Haven’s team member as an aide in the regular children’s preschool class. An aide? My husband and I exchanged astonished glances, not quite sure we heard correctly – it sounded too good to be true,…an individual would stay with Isaac and help him with his communication and re-directional needs? Not only that, but Stephanie explained that Isaac’s security label would be flagged so the other children’s workers would be aware that Isaac had special needs. Honestly with the kindness and reassuring, reassurance we experienced, it felt like we had stepped into a wonderland. Isaac with his aide, happily left for his preschool class, my husband and I attended worship and were so blown away by the message, and the divine presence of the Holy Spirit, which was so strong even though we were visitors,…we felt like we were home. So much so, my husband and I stayed for the growth track after church, which meant Isaac would be in the nursery for ninety minutes longer,…but he was happy, and so well cared for,…we didn’t have a qualm,…and that speaks volumes about our first experience with the Haven Ministry.
Within six weeks, and a background check, and hurray that all Haven Team members undergo a background check, I began to serve in the Haven Ministry under Ms. Stephanie. The ministry is that important and that needed and I am honored that I am allowed to share in the hope and encouragement it provides. Our Isaac is not just tolerated at Church of the Highlands, but Isaac is cherished, from the security guard who guards the children’s department and, cheerfully helps to chase down our little guy if he get a chance to dart out the door, to the welcoming Check in Team, who have learned how to sign, Isaac’s name, to the very special individuals who dedicate their Sunday mornings and Wednesday evenings to spending time with our son,…to chasing after him, to listening to his echolian chatter, to sitting under the table with him, if necessary, to taking him on sensory seeking walks, or to holding him if he is overwhelmed,…and then to take the time to tell us,…what a joy and privilege it is to be with Isaac,…and you can’t fake that kind of enthusiasm or sincerity. These people love my child, they love the LORD, and they love my family and tell us so, in word and deeds.
Saint Francis of Assisi is said to have said:
“Preach the gospel at all times and when necessary use words.”
That quote pretty much defines what the Havens ministry is all about. With Autism, compounded with Apraxia it is extremely difficult to know what Isaac understands, it is difficult for him to sit still for a Bible story or a Bible song and with Apraxia, he cannot yet readily say his own name, much less repeat a Bible verse. How else will my son, and other special needs children know about the gospel, unless they experience it in action. Love one another. Be kind to one another. The Haven’s Ministry is not just babysitting my child or providing respite, but they are living the gospel, as witnesses before my child,…they are providing a means and reference for him to know what it means to love and cherish one another – as is.
For a special needs family – to know – there is a place you belong – is a reassurance than cannot be fully expressed. Our gratitude cannot ever be fully measured,…our debt of love will never be paid. We have a church home, where we can worship, and grow, and even serve for the special needs individuals and their families have value. Until we are called to our heavenly home, and are made whole, we will reside in the haven, of the Havens Ministry and pray that its circle of influence will grow to each and every special needs family not just in our area, or nation, but the world,…for the harvest is ready,…but the workers are few,…and the special needs community no longer needs to be forgotten, or left behind. Thank you.
           

 For Isaac

            


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

Sunday, March 16, 2014

Lessons In Futility,...

After church this Sunday we stopped by Walmart with just about everyone else in town to pick up a few supplies for the coming week. Our local Walmart has a McDonald's inside and my husband reported that as soon a he and Isaac approached the counter the cashier smiled and automatically said:

"Small hamburger - no ketchup or mustard!"

"Yep," my husband answered, because he knows it is futile to order anything else, as Isaac can't tolerate - a soggy - hamburger bun. 



While my guys were noshing - plain burgers - I shopped for milk, eggs, bananas and other necessities like chocolate chip cookies for Isaac's tea parties,...because chocolate chip cookies are the only type cookies, aside from homemade oatmeal, and graham crackers that Isaac will eat,...it is futile to hand Isaac an Oreo,...he'll merely hand it back with a "please-don't-insult-my-intellgence" look,...


As a reward for very good behavior at the check outs,...we stopped by the Game Room,...which was surprisingly empty for such a busy store,...


Isaac did big eyes,....


And our tidy little guy handed me his napkin,...


But it was futile to expect a quarter today,...today was not a quarter day,...it was just a let's-stretch-our-legs-for-a-moment-before-the-ride-home day,...because quarters don't grow on trees. 


Lessons in Futility,...poking buttons just exercises your fingers,....


Mashing buttons doesn't help either,....


Such a puzzlement,...clearly the machine is broken,....but Isaac wasn't heart broken,...he did a few more laps around the small room,...zooming about in his very special style,...until he was ready to go home and catch up on a little light reading,....



When we went to pick Isaac up from the Children's Department after church,...the police officer who guards the door,...laughed and held up a finger, "Only one escape today." -- meaning Isaac darted out of his classroom - bent on wandering - only once while we were in service. 

It's futile to expect anything more at this point - Isaac is as he is,...but Isaac is learning and growing and maturing - and just as he was a good sport about no quarters today - we trust that he'll learn - one doesn't wander - it's not safe - and he's expected to stay in his classroom like the other children - only Isaac is not like the other children - and it's futile to expect him to be so,...Isaac is as he is,...and lessons in futility are what we are learning on a day-to-day basis.

Autism and Apraxia  are a reality that we live with, but as I write these words,...I can hear Isaac in the living room,...he's singing: Twinkle, Twinkle, Little Star,...for the first time ever,...or rather he's been singing Twinkle Twinkle, all afternoon,...but today is the first time he's ever sang a song in its entirety so futility is not absolute,...and hope is on the horizon for our little guy,...the first song was a long time coming,...but I hear it warbling in the living room,...and if that is not hopeful,...I don't know what is,...

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













Friday, March 14, 2014

Tea,...Anyone?

This week after school, Isaac was properly initiated into the rite of afternoon tea,...at four o'clock,...of course. 


Actually I purchased this tea set last year not realizing it was ceramic,...thus it was prudent to put away until Isaac's happpily-slinging-toys-across-the-room phase had passed. I had forgotten all about this set until I came across it and as Isaac's pretend play needed to be taken up a notch, I dug it out and quite innocently arranged the tea set on one of our kitchen shelves,...very nonchalant,...I didn't mention a word about 'new toys' or 'tea set' to Isaac,...I was curious to see if he would notice the new addition on his own,...and if he would be remotely interested. 

And that would be a YES,...to both questions,...and it's kinda funny how it happened because Isaac was a little sleepy after school and do I dare say a tad grouchy? Clearly he and not gotten his nap out, and we were in the kitchen and Mr. Grump was whining,...sorry Isaac, but its the truth,...you were not happy in my arms,...until your eyes spotted four teeny little cups and an adorable little tea pot,...and then Isaac's face flashed a sunshine smile and he quite hilariously pointed to the shelf and said, "Oooooooh," - a lot is lost in translation,...but that little articulated, "OoooOoooOoooh!" - was hilarious,...


After I got the tea set down,...it took Isaac exactly three seconds to figure out how a tea party works!


It was tea for two,...with Isaac sharing the goodness of pretend tea with Mama!


Accuracy in pouring out the 'pretend' tea took longer,....


Great therapy for fine-motor skills,...but of course,...I never breathed that to Isaac,...


The water made a HUGE mess,...but it's so nice to have a tidy child,...Isaac doesn't like messes,...especially soggy ones,...he thought mopping up was as fun and pouring the tea.


I nearly titled this post: How to Hydrate a Child,...because Isaac must have drank a half gallon of water,...and more than his share of sunflower seeds and raisins,...because in a pretend tea party you have to have refreshments in the creamer and sugar bowl,...next time we'll have tea cakes and sandwiches too,...Isaac will like helping to make those,...and it will be more sneaky therapy,...which is important,...children on the spectrum quite often have to be taught how to play,...especially social play and there is nothing more social than a tea party!




Needless to say we were thrilled with Isaac's response to his new tea set,...it was age appropriate, and pretend appropriate,...very encouraging. As were reports from Isaac's teachers this week,...our super sonic little guy is learning how to sit still for a story,...VERY difficult for him,...but he's making progress,...he's being kind and compassionate to his friends,...especially those students in his class that are less physically able than he is. When I picked Isaac up from school one day this past week, he was on the playground,...helping to swing another little boy who was clearly less able than Isaac,...soooo sweet and soooo encouraging,...because there was a time when Isaac didn't notice other children,...but now he wants to make friends,...so yeah and hurray for our little guy. 

There are still so many things that don't come easily for Isaac,...complex social structures,...attention span,...and then begin able to speak and say what you want to say when you want to say it,...Apraxia doesn't make that easy for Isaac, but he's trying and learning and growing and we're so proud of his progress. 

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







Monday, March 10, 2014

Crackers, Crumbs and The Meaning of Life,...

Yesterday after church,...Isaac had a slight dilemma during lunch,....



Catfish or Cake?




Actually it wasn't much of a dilemma,...the catfish won hands down,...



 And the poor carrot cake? It was doomed to neglect,...


It was tempting to title this blog post: The Lament of the Valiant Carrot Cake,...look how patiently it waited on Isaac to even taste a crumb,...I am sure that carrot cake thought it had a fighting chance once all the catfish was eaten,...because Isaac was soooo sad there were no more crisply fried fillets,...


Dare I say adorable-type people even pouted over the entire consumption of fish,...


A lesson in gone is gone and that means gone,....no more.....catfish,...but LOOK cake!!!


Needless to say Isaac was indignant at the suggestion,...because hello,...cake has gooey icing and that's gooey and icky and hello,...that means sensory-overload,...but Isaac is at heart a good-natured guy and his indignation only lasted as long as the camera shuttle could snap,...because even if the enormous portion of catfish is consumed,...there are compensations in life,...and NOT cake,...no not cake,...but crackers,....and not just any crackers,...but two crackers,...Isaac was immediately fascinated,...two crackers,...LOOK,...two crackers,...just alike,...fascinating!!!


Adults at the table were still talking,...so Isaac took the opportunity to study the crackers,...intently


Was he counting the holes? Or plotting a mathematical equation by density of the wafers? Or perhaps he was just pretending it was more catfish?


Crackers can be chomped two at a time,...a new discovery


The teeth marks look like they were from a four year old,...YES,...a four year old, male child had recently bitten these crackers,...and that child had eaten more of one cracker than the other,...no doubt Isaac will call his new proportion theory: FRACTIONS,...because one cracker is less than the other.


Defying gravity by raising the crackers overhead,...what will happen if he releases his hold? Will the crackers fall or will they stay suspended in air by sheer will power? Or else Isaac is just wishing those crackers were more catfish,....


Or maybe,...we're just sleepy???


Crackers are meant to be eaten - two - at a time,...and other people are meant to eat the forsaken carrot cake,....


Silliness aside,...after church while we were talking to Isaac about his class,...Isaac signed: church,...for the first time,...before he always signed school/class,...but he signed: church and even more precious Isaac signed: JESUS,...for the very first time,...and needless to say we were thrilled,...because as people of faith,...we want to share our faith with our child, but the communication challenges we face with Autism and Apraxia,...make it very difficult to know what Isaac understands,...but we also know that Isaac is fearfully and wonderfully made,...and that his own faith and knowledge will grow as he grows himself in maturity and wisdom,...because even children can be wise enough to know: For God so love the world he gave his one and only Son, that whosoever believes in him shall not perish but have everlasting life - John 3:16





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