At 42 Degrees

At 42 Degrees

Friday, June 28, 2013

To Sign or Not To Sign,...

 Hmmmm,...this is Isaac's thinking sign,...(his own)



Lately I've been thinking about the various therapies for Apraxia and Autism.

Seeking therapies, I've been getting lots of advice,...unfortunately often adamant advice,...that you MUST do this or you MUST do that,... which I find to be contradictory with the fact that autism is such a individual disorder. 

What happened to the quote? "If you've seen one child with autism,...you've seen ONE child,...with autism."

Lot of the advice and pushback I seem to be getting is on teaching Isaac sign language,...because: "No one will be able to understand him." 

Really?

Is that what they tell parents of deaf children? Get an implant or use a device, but DON'T teach your child sign language.

For us everything is on the table: Verbal, of course, PECS, iPod with talk apps, mime, tap dancing the morse code,...and sign language,...pardon the sarcasm and no disrespect to mimes or tap dancers,...but my point is why not use every technique at your disposal. 


                                          

Musicians don't use just one note, artists don't use just one color, or if they do, they create differing tones, so what's so wrong with Isaac learning sign language - if we are willing to teach him and he absolutely loves it and it helps him learn and communicate?

After all, my sole concern is Isaac's comfort in communication. 

Verbally Isaac has come such a long way,...we're getting sentences now and proper pronoun uses such as when Isaac open the freezer drawer the other day,...a prohibitive activity by the way,...but what could I do, when he grinned at me and said, "I did it!"

However, Apraxia doesn't make communication for Isaac easy,...his Echolalian is flawlessly fluent, but English is halting and difficult, and in the long run we don't know what degree of fluency Isaac will be able to achieve in his communication.

And to communicate, Isaac wants to do! In fact for a nonverbal child,...Isaac's is pretty much a chatterbox,...Mr. Opinion, he has something to say or sign about everything!!!

Never do I want Isaac to feel hampered by Apraxia,...it is not his lord, nor is it his master.

It is so important for Isaac to know HE is in charge and able to be flexible if Apraxia is giving his motor processing a hard time, then he can still communicate: he can sign, he can write (when he learns to write), he can use PECS, he can use a talk app on iPad, he can tap dance the morse code, for all I care,...but nothing and I mean nothing will be taken off the communication table,...not by this Mama. 



The more I learn about living with autism and the more I live with autism, the more I see it is so true, "If you've seen one child with autism, you've seen ONE child with autism."


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






Monday, June 24, 2013

Echolalian


Father's Day 2013 found us at the zoo,...we saw elephants, zebras, giraffes and Isaac's favorite the hippo.


Never have I been so close to a hippo,...they are usually 25 to 50 yards away. However there were two fences between us and this big guy,...very heavy fences I might add. 


Isaac was transfixed by that hippo while we watched the enormous creature shuffled around the pool deck. 


When the hippo went into the water, Isaac turned to us and let loose and long - drawn out - bit of communication that obviously was about the hippo - complete with inflection and exclamation, only it sounded like this, "Blabla,...bla, blabla,...bla, bla,...beebla,...boobla,...bla, bla,...BLA!"

Utterly incoherent jabber which we have recently learned is labeled: echolalia.

Standing next to us was a young couple also watching the hippo, but when Isaac let loose his own brand of communication - they were staring at us - eyes wide and with curiosity all over their faces and it was all my husband and I could do to keep from laughing because it was so obvious they were wondering, "Where in the world are they from?"

Oh dear, oh dear,...how to you explain we live in the Land of Echolalia and our son speaks fluent Echolalian,...which we happily are able to translate: Isaac thought that hippo was really-really big and really-really cool.

From what I understand echolalia has more to do with the autism that apraxia,...however any and all verbal output from Isaac is encouraging and beneficial for his apraxia which takes an extraordinarily amount of verbal practice to help his motor planing sequencing. 

Isaac is fortunate to be blessed with a high level of self-expression. He might not be able to speak clearly or have a large verbal or sign language vocabulary but through body language and his facial expression he invariably gets his message across,...

It is our hope Isaac's fluent Echolalian will eventually be replaced with even more fluent English, but until then we only too delighted to part of his unique world,...especially when he reaches out to communicate with us with whatever means he has. 





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

Tuesday, June 18, 2013

Learning the Ropes,...

 Learning the ropes for Apraxia and Autism here,...


To be perfectly honest, I am finding the vast amount of therapies for Apraxia and Autism to be bewildering. Every single expert seemingly has a different opinion and theirs is BEST.



For the past few weeks, I've been wading through research, ABA, Teacch, Floor time, and then there are all the speech therapies along with Signing Exact English, which I don't know how to exactly do, yet...


The sheer volume is overwhelming, and then you get into social classes and speech and occupational therapy sessions and pre-school preparations. Yikes! I won't even pretend not to be beyond my depth.

However, overwhelmed or not, I have to make some decisions and going with my instincts I feel inclined to take the best elements from the various alphabet soup therapies and individualize them for our little preschooler.

What we do here at home is the most important,...a couple therapy sessions a week are helpful, even extremely helpful, but the bulk of Isaac's time and attention is spent with us at home.

Going forward, it is to take some time for me to learn all the ropes of Isaac's double diagnosis,...time to figure out what elements, I want to use from what therapies,...time to plan the workstations that need to be set up,...time to organize the data to be collected,...time to plan the task shoe-boxes to be arranged,...and time to become more proficient in sign language,....

To tackle my therapy objectives I need to:

1. Go slow - not snail pace - but zeal without knowledge is never advisable.
2. Research throughly
3. Be flexible with schedules.
4. Ask advice
5. Enjoy the process,...life still has to be lived,...and Isaac is soooo much fun.




With a little help this past weekend, Isaac climbed the ropes to his objective,...the top of that cool tree-house,...and with a little assistance, or maybe more than a little assistance,...I know we can help Isaac achieve,...whatever goals he wants for his future,....


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






Friday, June 14, 2013

Thanks,...



Thank you to my husband for being such a great Daddy to our three sons.

Thank you for getting up so early in the morning to start your work day to care for us,...
Thank you for staying up so late at night to finish your work day to care for us,...
Thank you for bringing home supper when our schedules are crazy,...
Thank you for never being too tired to play a game of chase with our little one,...
Thank you for all the accounting accounts you keep up with to help our guys finance college,...
Thank you for never saying a word about all the therapy books, toys and supplies, I purchase,...
Thank you for all the laundry you do for us,...
Thank you for learning to cook for us,....
Thank you for giving up your own hobbies to spend more time with your family,...
Thank you for all the emails you take for us,...
Thank you for all the telephone calls you make for us,...
Thank you for battling the Insurance Company on our behalf,...
Thank you for AAA,...to keep us safe on the roads when you are away,...
Thank you for riding the Tower of Terror with Michael,....
Thank you for making sausage and biscuit breakfast for Teddy,...
Thank you for getting up at 3:30 am to play with Isaac,...

Thank you for always setting such a fine example for our three sons,....



Any man can become a father but it takes a special man to be a Daddy.


Happy Father's Day!


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

Wednesday, June 12, 2013

Physic Lesson,...


This past week Isaac learned a physic lesson,...not everything is what it seems,...thus you can't get a drink through a plexi-glass window.


Not that Isaac cared,...he was too busy playing with the other children,...and how accepting children are,...it doesn't matter if  you can't speak,...a friendly smile, a giggle,...and a chase-me-grin go a long way. 

What is even nicer is the children were calling Isaac,...Isaac,...without having to ask him his name,...'cause of course,...it's stenciled upon his shirt,...if fact,...ISAAC is stenciled upon just about every single shirt he owns,...just a few strays awaiting fabric paint. 


Here is a gander of the latest batch,...we're liking the non-traditional fonts the best,...and contrasting colors are vital for the monogram to pop!


This task done,...more work to go as I continue to research therapy,...TEACCH is looking interesting,...Isaac is a visual learner,....I've hours of reading ahead of me,...lots of googling,...and tons of questions for Isaac's doctors and therapists. 

Whatever it takes,...I told Isaac's doctor this afternoon,...if she thinks scuba diving will help Isaac,...I'll go buy some flippers,...

The physics and physicality of autism is more mysterious than a plexi-glass wall,...some realities are that concrete,...you can or you can't,....but at least here at the starting point,...everything seems possible,...and the only failure is not to try....

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

Thursday, June 6, 2013

Project: Read To Me,...



Today Isaac registered for the summer reading program at our local library. He picked and checked out his very first library books. 

OK, OK,...rewind, Isaac happily ran laps about the children's area while I picked the books.

But, in between keeping up with my little super-sonic guy, I chose books I knew Isaac would enjoy - like the Belly Button book,...his speech pathologist uses that book during his sessions sometimes and Isaac has always responded well to the pictures and candace of the rhyme. 

Since we already have quite a proliferation of children's literature in our home I purchased Isaac a clear backpack to hold his precious library cargo. Also I purchased a large hook to hang the backpack - high upon the wall,...out of reach of little hands,...the last thing we need is these library books to be scattered willy-nilly. 

While shopping for Isaac's backpack I spotted some cute post-it notes: a hand with the thumb up. I thought they would be a good reminder of how many books we need to account for, and exactly what the return date is. It will be an easy memo to see through the clear plastic pocket. 


Of course the most important aspect of Project: Read To Me,...is helping Isaac become more aware of literature,....words, abstract concepts, daily life beyond our sphere, listening skills, speech practice,...and most important: social interaction,...

I am sure lots of silliness will be involved such as Mr. Isaac being a monkey with this upside down book on a long, long, long road trip. 

But that's OK,...reading should be fun!

Reading library books to Isaac can only be a good thing:

Social,..we'll visit the library and interact with the librarians and other patrons.
Interactive,...we'll read and discuss the books - together.
Rewarding,....Isaac will learn new skills and responsibilities: like keeping up with the books.
Cause and effect,... we read books, we record books, we show the librarians our log page and we get to pick out uber-cool prizes from the summer reading program treasure chest. 

Oh yes,...it's going to be a very literary summer....



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


Wednesday, June 5, 2013

Misperceptions,....Mine



Our local library had its summer reading program kick-off party with a concert by a children's musician at the civic center,....we took Isaac.

Books and reading are very important to our lives,...my oldest son and I both write and we love to read even more. When I learned I was pregnant with Isaac the very first thing I purchased for him was a book, and then another book and another.

Before Isaac owned a stitch of clothing he already had quite a library of children's books,...then I finally purchased some newborn gowns and onesies and awaited for his arrival so we could dive into the wonderful world of literature,...together.

Isaac arrived, but he had utterly no interest in books aside from examining how there were constructed. This by the way was one of our inklings,...Isaac wasn't exactly typical. He had zero interest in sitting in my lap and looking at a picture book.

Daily I tried, but Baby Isaac had no interest in cooing or oohing over chunky books, or colorful books, or music books,...or any books.

Tears were shed,...mine.

However persistence does pay off,...I haven't stopped buying Isaac books,...usually from the thrift store,...he has quite a library and he actually likes his books now,....in his own way.

On his own Isaac looks at his books, he looks at the pictures,...pointed out all the letters in alphabet to us and what few words he recognizes like: ROCKET, POT, PIE,...thanks to WordWorld videos.

And to my delight, Isaac does, now like for us to read to him,...in short bursts,...but that is better than the previous no interest whatsoever and aside from our therapy time - we have at least five or six reading sessions a day. I literally drop everything when Isaac brings me a book.

To help facilitate these reading sessions, I have books everywhere in the house, and Isaac has a chest to store his favorite books,...actually a very cool chest,...an antique aluminum, igloo cooler which used to hold my manuscripts and research, but Isaac decided it would be a better receptacle for his books,...and I had no problem with that,...plastic tub for me,...uber-cool book-chest for him,...

Despite Isaac's emerging interest in literature we haven't been to our local library much. I've been leery of checking out library books for Isaac,...although he's actually very careful with books,...no shredding or dismantling nor annotating with crayons.

It's the returning the books on time that weighs on my mind, I hate, truly hate to have late books. It's not the fines I mind, but the icky feeling of dishonoring a contract.

Checking out books from a library is a privilege. The books are treasures and should be treated as such,...and when my older boys were younger,...I have made a rush trip or two to the library to get there just in the knick of time. I wanted my boys to know it was that important.

With Isaac I have so much going on with school and therapies, I actually have to make lists on my hand when it is vital not to forget an appointment. It's been a mind-numbing whirlwind and I haven't needed the added pressure of keeping up with library books and making sure I return them on time.

There is also the quiet factor in the library,...I do come from the era of "ssssssshhhh" in libraries.

For a nonverbal child Isaac's communication can get rather loud,...although thankfully the screeching stage was just a stage and he's moved on,...but Apraxia makes it hard for Isaac to regulate his tone,...either his voice is very soft or very loud with a middle ground hard for him to reach.

Then there is Isaac's super-sonic mode having him zip in and out of the book aisles is not exactly respectful to the other patrons.

A children's concert though,...loud doesn't matter,...everyone's loud,...hyperactivity doesn't matter either,...everyone's out of their chair,...dancing and wiggling and jumping about.

When we pulled into the civic center's parking lot, I actually thought we had a shot for a good experience, until we got into the concert hall and Isaac had no interest in the crowded venue, nor the dance troupe which opened the show, nor the music once it began. It was sensory overload, and Isaac went into full hyperactive mode,...and yes people were staring, but this Mama couldn't have cared less.

Let them look!

Isaac was wired, but he wasn't being disruptive.

Wisely I chose seats in the very back aisle and I never expected Isaac to sit in his seat.

 Hello, that would have been asking too much. In the back of the concert hall there was a concourse with plenty of room for Isaac to express himself with jumps and dodges and supersonic bursts. We took timeouts and signed the numbers 1-10, we went outside and took walks down a quiet corridor.

Then we'd return to the concert hall.

It's difficult to explain Isaac's reaction, because when I say he had no interest, that doesn't mean he wasn't aware of what was going on. Isaac clearly knew there were lots of people, lots of children, he was aware of the loud music, and to be fair the acoustics weren't very good, so it's hard to blame him for not getting excited over lyrics which were hard to understand.

The most important question was Isaac enjoying the experience? And the answer is yes! There is an excitement that a large crowd brings. It was sensory overload for Isaac, he needed breaks, but he did want to go back into the concert hall.

There was a happy dance to Isaac's steps, his little face was lit up, he was enjoying the experience in his own way and that's when my misperceptions began to fall away....

Understand, we're only three years into having Isaac in our lives,...and even a shorter time than that to fully realize the depths of Isaac's special needs. It's perfectly normal to have the perception Isaac would enjoy a children's concert - as a concert.

That didn't happen. Isaac experiences the world in a different way.

I took Isaac to a concert, but he experienced it, not as a concert, but as a large room filled with energy and noise - not inharmonious noise, but it was not music he recognized as music - such as the choral group that so fascinated him the afternoon of his graduation.

Last summer when we began Early Intervention I took Isaac to Kindermusic and perceived each class as a disaster because Isaac had utterly no interest in the music, nor the movement, nor the interaction. I sobbed after each class, often in tears before we were even out of the room. I was devastated.

It helped that Isaac eventually warmed up the the rhythm instruments and of course utterly loved the parachute,...but I counted our weeks at Kindermusic: a failure.

Since then, I've learned a lot about Isaac and his conditions and myself. 

That's why this rather reserve Mama, who doesn't like to draw attention to herself, couldn't have cared less we were drawing so much attention from the other parents. It was impossible to miss Isaac in the crowd, he did look rather fabulous in one of his ISAAC shirts a red one, blue jean shorts and a pair of red sneakers.

Nor could you miss that Isaac wasn't exactly typical. If the hyperactivity didn't clue you, then our signing would,...and I am actually thankful for our signing abilities. It helps others to understand, that yes, there is something else going on with this child.

Generally in our experience people have been very compassionate and kind when they realize Isaac's behavior isn't exactly typical for a reason.

Even the performer noticed Isaac and was so kind when I took Isaac toward the stage where all the other children were gathered in a happily wiggling dance crowd.

That's the most interest Isaac took in the concert, he kept signing the word: music to me and watched the other children with interest for a brief time.

While up front, I kept Isaac on the fringe of the crowd near the corner of the stage and I was translating the lyrics to him thankful I knew the signs for Big and Dreams,...that's when I noticed the music sounded very close and I looked up to find the musician had veered from the center stage and was smiling at Isaac and singing directly to him.

I nearly cried, it was such compassionate gesture for the performer to make letting Isaac know:

"Hey little guy,... you're my audience too."

More misperceptions fell away.

Isaac is an audience and just because he doesn't experience the concert as the other children doesn't make him less of an audience. 

Last summer Isaac probably enjoyed Kindermusic, but I was setting up false expectations, expecting him to enjoy the classes on what I perceived, not basing his enjoyment on his own perceptions.

Obviously this takes a lot of mental adjustment because I am rewiring myself to understand that Isaac's enjoyment of an event will often be on a different level. After all that concert hall's back concourse was a pretty cool place to do some zippy happy dances.

Most important Isaac did get to experience a children's concert to tuck into his frame of reference. It's a challenge that we can't fully discuss an event,...but what can we do,...Apraxia is cruel,...but not our lord and certainly not our master,...sign language to the rescue. Isaac did sign: music....and I am hopeful as he matures,...he'll be able to express himself in greater depth,...after all Isaac does now like books and sits in my lap and lets me read to him.

Like reading, we're not giving up on communication.  We'll be using sign language at our next event, and our next concert because, Autism and Apraxia aside, Isaac is still a child and he needs as many experiences as we can fit into our time and budget.

We will be joining the summer reading program. We'll, yikes, check out books, read them and hopefully get them back to the library on time. We'll go to the arts and craft times at the library and participate in whatever is age appropriate for my little guy. We'll dream big for Isaac and remember: the only failure is not to try.

For myself,...I am so grateful to have these misperceptions fade from our lives. Isaac experiences the world in a unique way and he makes sure you do too,...and that'a a gift.





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




































Monday, June 3, 2013

Dance Party,....


Fitting in fitness,...because I refuse to give up on fitness....Before I became pregnant with Isaac, I had lost 102 pounds,...by eating sensibly and exercising an hour a day....and I was training for my first 5k since high school track,...and not just to run a 5k,...but to win it!



Oh yes,...it's a little hard to believe now, but I was in such disgustingly good shape at 44 years old,...I could do real push-ups and even a couple of pull-ups and I could book for a solid two and half miles. 

In this picture I am nearly 12 weeks pregnant with Mr. Isaac,...and being in such good shape made this my easiest pregnancy and delivery,...but the recovery,...oh dear, oh dear,...it was long and difficult,...and combined with Isaac's severe jaundice when he was a new born, and then later his undiagnosed autism and apraxia,...makes everything seem like a blur.

That first year,...fitness was on the backseat,...I just wanted to achieve a full night's sleep,...and then the next year,...in January my father,...unexpectedly died just hours after Isaac's second birthday,...that next month at Isaac's February well baby check,...our pediatrician frightened us with her insistence to have Isaac's speech evaluated - NOW,...and then the urgency and drama of early intervention entered our lives.

Quite a whopper of a year. 

Into year three,...Isaac's sleep issues are moderating,...some. Occasionally Isaac will take us on a blast from the past,...like a few weeks ago when he woke at 3:30 am,...happily giggling and ready to play and not interested in lullabies,...no siree Bob!....But I have to say we are all getting more consistent sleep,...and fitness is playing a part in that because we've been taking Isaac for evening runs.

The weather has been beautiful,..warm and balmy with gnats kept at bay with nice breezes. We all troop outside,...and chase Isaac up and down our street that has a deceptively steep grade on a hill,...it just looks like a gradual slope until you are puffing and panting up and down it. 

Isaac doesn't puff or pant,...he runs without even getting out of breath,...and there is so much joy in every single step he takes,...it looks like dancing. He's happy,....happy,...happy,...and that's a small price to pay for heaving lungs on our part,...because three years of iffy sleep and more iffy eating habits,...have gotten my husband and moi,...quite out of shape. 

Notice, I am not posting before and after pictures,...although I am proud to say I haven't gained all my previous weight back,...but I haven't lost my pregnancy weight,...either. 

And I've been OK with that,...what mother love will do,...but if I've been chubbier than I'd like for the past three years,...it's been for a good cause: Isaac. 

Easing back into fitness hasn't been easy,...my old formula isn't going to work with my present lifestyle. Hello,...some days I barely have time to eat, much less have time to weigh out every single ounce, nor do I have the luxury of hitting the gym for a couple hours,...three or four times a week. 

We are blessed to have a very nice home gym in our basement,...it's huge with laminate wood floors, spacious space, an elliptical, free weights,...plus lots of other fitness toys like weighted ball, kettle weights, ab roller,...which as silly as it looks,...you know the one little wheel with two bars hanging out,....but that thing works when used properly,...it's an ouch-city workout for your abs and arms. 

And of course, I've tried to use our home gym in the past three years,...but nothing ever worked,...Isaac would ALWAYS wake from his nap,...he didn't like me on the elliptical,...and it was too dangerous to use in his presence,...especially with him tugging at my leg,...he didn't like me on the exercise mat,...it was instinctual for him to interfere with leg raises and ab exercises. And FORGET yoga,...that wasn't going to happen,...believe me I tried.

Last week,...my oldest son had a couple days off work and I had to opportunity to go downstairs to our gym and dust off the elliptical. It felt great to do a serious workout,...sweat-city! 

But what to do when it's just Isaac and me? He's much better about the elliptical,...i.e.: he doesn't climb on it anymore,...but I wasn't sure if he was going to let me work out for a solid hour without,...hold me-hug me-kiss me-itis taking over,...but after last week I was determined to give it a shot,...because those nightly runs with Mr. Isaac are so underlining how out of shape,...I truly am. 


WOW,... what fun we had and how nice that working out with my little guy felt like anything but work. It was a dance party,...I had my GYM4,...playlist rocking and Isaac and I danced for a solid 45 minutes, and then fifteen minutes of mat exercises...and no Isaac never breathed hard or broke a sweat for a second!!!....I did. I was wiping sweat and panting when I wasn't laughing like crazy with my little guy. 

I was happy to be in motion, I was happy Isaac was so cooperative about our time together and I was utterly ecstatic,...Isaac was showing such good imitation skills....I put a ball on my head, he did. I did a leg lift,...he did. I lifted a weight, he lifted push-up grips - like they were weights. I chased him, he chased me. Taking a leaf from Kindermusic we played, fast, fast, slow, slow,...big and small, and rolled the ball,...which wasn't a perfect success, Isaac didn't want to sit and roll back and forth while I sneakily worked on stretches,...but he was more than happy to chase the ball down and bring it back to me,...while signing: more, ball, and again Mommy!!!!

The workout really worked too,...because as I am typing this,...I am sooooo sore,...but it's a nice soreness,...a healing soreness,...a soreness that says, "Yes girl,...you're going to have a shot at that 5k,...once again." 

Maybe not to win a 5k,...a lot of priorities in my life have changed,...for the better,...to participate is enough,...and to know Isaac and I will be able to share a fitness lifestyle together is a greater reward than any plastic medal or tin-type tee shirt. 

Lots of unknowns in our life just now with Apraxia and Autism,...but being gifted the opportunity to share such an important aspect our lifestyle with our little one,...to have dance parties and nightly races,...to hear his giggles,..see the joy in his step and that bright smile on his face,...that's priceless. 






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