At 42 Degrees

At 42 Degrees

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!




































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