Speech and Language Evaluation; Speech and Developmental Delays

About a month ago, Tantrum Tot, my 23 month old, had his initial autism screening during a well-baby appointment at the pediatricians office.  The result conveyed was extremely high risk.

The pediatrician made an appointment for us to have a speech and language evaluation while we wait for an appointment with the developmental pediatrician, who by the way, we will have to wait several months to get in to see, AND drive three hours in each direction for a visit!

We are still waiting for our initial information packet, which needs to be filled out and returned to them to arrive in the mail.  No appointments will be made until they receive the packet (it would be nice if they actually send the damn thing to me though). To date, I am still waiting.

Today we went for T's Speech and Language Evaluation.  He played quietly lining up toy school buses in the waiting room while me and hubby filled out the intake paperwork.  Unfortunately that quiet was followed by a head-banging temper tantrum two seconds into his evaluation.

The speech pathologist took him into the therapy room leaving hubby and I in an observation room behind two-way glass.  I felt like my poor baby was being interrogated while we lurked on the outside.  She attempted to sit him in a hair with a "tray" of sorts.  It was like a highchair tray--big mistake! He freaks out if you attempt to restrain him to a high chair or anything where he cannot move around freely.

He screamed, cried, threw things, and tried to hit the poor woman with his head. I had to go into the room to hold and rock him because the poor kid was hyperventilating he was so upset.  The pathologist said that most of the autistic children she works with love to be in that chair, and have their own play space.  Well, not mine!

When finally calmed, he wanted the animals from the Noah's Ark toy on a shelf. Mom and the little guy sat on the floor lining up animals together. He was fairly cooperative from that point on.

The results: Receptive Expressive Language Delay; Developmental age was determined to be right around one year.  He is only using three words at the moment: Mom, No, and Go. Little guy does not respond to his name, or make eye contact--but we knew all this already.

We are still awaiting a visit with the Developmental Pediatrician to confirm his doctors ASD suspicions, and will (hopefully) be starting therapy two days per week--if our insurance will pay for it.  If they do not, I am not sure exactly how much therapy we will be able to afford.

I was not able to get anyone from Blue Cross / Blue Shield on the phone today, so I will be hounding them first thing in the morning armed with my diagnosis and treatment ICD-9 codes.  If anyone has experience with BC/BS and speech therapy, please let me know what your experience was.

This is the first of my three boys who has had any kind of speech therapy/intervention this early so I am not sure what to expect fully at this point.  The older boys were both at least four when they began speech therapy through the school system.

If your little ones had early intervention speech therapy, what was the outcome?  Do you think it is really effective at such a young age? I'd love to hear your experiences.

Blogging my book about growing up with undiagnosed Autism

In an effort to stick to something, to stay on track, to actually make it to a goal, I began blogging, Twirling Naked in the Streets—and No-one Noticed, which is a memoire of sort about my growing up with undiagnosed autism. In the spirit of my top ten blog post lists, I decided to take a look at the top ten book excerpts for Twirling.

When the book is completed (hopefully soon, if I get my tooshie in gear) it will be available edited, and in extended format in both print and e-book format.  Until that time, it will be available to everyone (thank you to all my book/blog readers so far!) to read on my blog. I am posting as I go so you are quite literally seeing it as I am writing it. (No pressure, right?) Please feel free to comment as I go along, your input is very valuable to me!

Here is a list of the top ten Twirling Naked in the Streets (chapter excerpts) posts

1. Asperger’s and the Transition to Working Chaos

2. The Princess, Her Socks, and Her Late Pass

3. They Missed It; They Missed Me

4. Love or Obsession: When a Person Becomes an Aspie’s Special Interest

5. Not Seeing the Signs; the Mind-Blind Aspie

6. The Rigidly Inconsistent Worker–Aspie Problems on the Job

7. School was a Minefield

8. Kindergarten: They were doing it wrong!

9. When Good Grades and Talent are not Enough

10. The Dangers of the Teenaged Autistic Girl and Her First Loves

 

Thanks so much for reading; stick with me in 2013!

A happy and healthy New Year to you all!

~Aspie Writer

Rituals and Routines; I finished my book, now I can’t sleep!

I need to buy two books at a time! A few months ago I began reading the Sword of Truth series, by Terry Goodkind.  Only recently have I begun to read so much fiction, and am glad that I have.  Reading and writing fiction has been like therapy, and good exercises in Theory of Mind, but that is a subject for a whole other discussion.

The Sword of Truth Series has a total of twelve books, and I have consumed nine of the twelve.  I began with the Wizard’s First Rule, and wrote about how that stupid wizard was continually nagging me here. Well, I am hooked and now my wizard and all the other characters in the saga are my close friends. I spend time with them daily.

Without realizing it I began a ritual. Each night I crawl into bed with my Kindle (I love my Kindle, and have my eye on the new Kindle Whitepaper for Christmas…hee hee), and go to D’Hara to check on Richard (the hero of the book) while crunching on several packs of Smarties.  I think I am now developing a Smarties habit and problem too.

Hubby has gone to Wal-Mart at midnight because I was out of Smarties, and I need to munch on them while I check on my friends (read my book), or I will not be able to relax enough to sleep. Several times, there weren’t anymore!  Really? Who is eating up all the Smarties in town?  Oh—that may be me.

A couple of weeks ago, I announced that I needed to start buying two books in the series at a time so when I finish one I would not have to wait in order to purchase the next book in the series.  Of course, I didn’t actually do it, and I am now paying the price.

On Wednesday, I finished reading, Chainfire, book nine of the series, and downloaded the sample of Phantom, book ten. I might add a small complaint here to Mr. Goodkind.  The samples of the books, (a portion you can download onto your kindle to read before purchase), have been getting shorter by the book!  I thought the sample would least last me a day—but alas it was too short.  Or, maybe I read it too quickly—but I finished the sample Wednesday night as well.

Its Christmas time (that is my excuse) and I have to wait until payday to purchase book ten. I will purchase, ten and eleven, Confessor, on payday so this does not happen again because I have been unable to relax and sleep well the past few days. 

Reading these books has become my source of relaxation, winding down, decompressing, and very much a bedtime ritual and routine.  I have been “off” the past few days because my routine is messed up. I must admit that when I finish a book, and in this case it will be worse because it’s a series, I wind up in a funk—depressed and missing my friends.

Hubby suggested that I read another book (I have plenty), but I cannot do it.  I cannot start another story in the middle of this one!  Grrrrr

Anyway, tomorrow at dawn’s first light you can be certain I will be on Amazon downloading Phantom! What am I going to do when the series is over? I think I need a plan.

It seemed like such a small thing, a tiny routine, a small bedtime ritual, but when it was messed up it affected my sleep—despite my taking my Melatonin, I had trouble drifting off.  My sleep in turn affected my mood. It hadn’t occurred to me how even the smallest upsets can turn the whole day inside-out, and I am an adult. Can you imagine how our ASD children feel when their routines, no matter how tiny, are interrupted?

Be Careful of What You Say to ASD Children; the literal-Minded 8 year old

Our Words and our ASD Children

Being mindful of the words we use when we speak to our ASD children can be exhausting, but so can the meltdown that follows misinterpretations. Understanding how their highly literal minds process the words is crucial. 

It’s Sunday again and I am reminded of what my 8 year old boy said to me last Sunday.

I didn’t watch him get dressed and leave the house to go outside to play. Only a few minutes after he left the door burst open again.

“Ma-a-a-, I’m fr-r-re-e-ez-ing,” he said putting his ice cold hands inside the sleeves of my shirt. “It’s cold outside!”

He sounded truly perturbed, which puzzled me.

“Of course it’s cold, Matthew, it is November.  And you’re wearing shorts and a t-shirt! Go get changed.”

“No, Mom it’s freezing outside.” He said completely ignoring my instructions to change his clothes.

“If you put some warm clothes on, you won’t be cold”

“But it’s not supposed to be cold!”

“It’s November, put warm clothes on,” I insisted.

He still didn’t budge. “It’s Sunday, it’s not supposed to be cold.”

“Why not?”

The little man dropped his shoulders, and sighed, “Mom, SUN-day.”

He walked away from me shaking his head like there was something seriously wrong with Mom. How could I not get it?

To little man it was Sunday, which meant the sun was supposed to be out, and he was not supposed to be cold. He left me sitting here at my keyboard completely dumbfounded.  How long has he believed that Sunday meant the Sun would be shining?

I told a friend of mine (who I suspect is an undiagnosed Aspie) this story. She told me that when she was young she always insisted on eating French fries on Friday, because that was what she was supposed to have—her fries on FRY-day.

I often get glimpses into his literal world, fortunately, I can relate to his literalness but I often forget what it was like to be that young and take the world even more literally than I do now.  I wrote last week about his irritation with the “Slow Children” sign at school here.

My youngest (22 month old) has begun a screaming head banging stage! It’s awful.  And—he has had an ear infection, and has not been sleeping well at all.  My husband has taken to driving him in the van at night to get him to fall asleep. 

Finally after a long day of screaming, I got him down for a nap. It was just in time for my 8 yr. old to get home from school. He came running in the house with his friends from next door.  Since the baby was sleeping upstairs, I let them play the Wii down in the living room (big mistake).

After several times of telling them to quiet down that went ignored, I finally shut off the game and made everyone go outside to play. When they burst through the door again, waking the baby, I yelled that everyone needs to go outside to play.

“And don’t come back in the house!”

About a half an hour later I was sitting in my bedroom, which has two windows facing the front of the house, when I heard my eight year old crying—hysterically. I ran outside to find him bent over the front of our mini-van, with his head in his arms, tears flowing down his cheeks as he sobbed. 

“What’s wrong? What happened?”

He could barely get the words out between sobs. “I-I c-c-c-an’t come back in my house. I’m kicked out.”

The girls next door had to go inside, and my little man thought that he could not come back inside—ever!

LESSON LEARNED: I must be extremely careful of the words that I use when I speak to him. He will take every single word literally, and infinitely. Don’t come back in the house—for him, meant don’t ever come back into the house—EVER. This little mistake caused a complete meltdown which could have been avoided.

The word “NO” is another pitfall to avoid.  If he asks me a question, for instance, “can we go buy ice-cream?” I cannot simply say, no. I must qualify my answer.  No, we cannot go today, or right now, or it’s too cold outside today, or something. If I do not and simply answer, No, meltdown can quickly follow.  It is not because I told him No, but because he took that NO to mean no, not ever.  We can NEVER go and buy ice-cream-EVER.  

To the non-ASD person, this can seem like a child just being a brat, just wanting to get their own way (sometimes, yes—this can be true), but more likely it can be a misunderstanding, a literal misinterpretation of the words that you speak.

Growing up I had many of these misinterpretations, which were looked upon as my being difficult (intentionally), or throwing a tantrum when I didn’t hear the answer I wanted. Many times, that simply was not the case.

For an example of my literal-mind growing, where just one word made all the difference, or rather caused all the problem read: School was a Minefield.

Your Other Left: Spatial problems in autism

 “You need to make a left at this corner. No—your other left” ~ Mr. Aspie Writer

It doesn’t happen every once in a while; it happens all the time.

Whenever I am asked for direction (I am great at giving directions because I remember street names) I stumble over which way to tell the person to turn. I will point to the left and say right, or point to the right and say left—without fail.

I literally have to pick up my hands, look at them, and remember which one I write with.  I write with my right hand.  When I get those inevitable odd stares, I just laugh and say, “38 years old and I still can’t tell my left from my right.”  Ha-ha. But it wasn’t funny, it was embarrassing.

When I am told, “it’s the first door on the right,” I automatically turn left when I get there.  It’s in the right drawer, the right cabinet… I open the left drawer and the left cabinet every time.  I always thought I just had some strange mental block or something. I mean with a 50/50 chance of accidentally turning the right way (left or right) I get it wrong 100% of the time!  What are the odds?

It never occurred to me that there might be a reason, other than my own stupidity, for my difficulty differentiating right from left.  It never occurred to me that autism could be the culprit; that I was having spatial perception problems.

When I was younger (early twenties) I taught ballroom dance at Arthur Murray Dance Studios. I needed to call out which foot my partner had to use, and in which direction he needed to move. If my partner was taking a step with his left foot, then I was doing the opposite with my right foot.  I never got tripped up.  My movements had to be a mirror image of his—always backwards, so I blamed that dance experience for my difficulty with right and left.

After all, since I taught that way for a few months, it must be the reason I still can’t tell right from left almost twenty years later.  Right?

I never did come up with a good excuse for why I had difficulty before I worked there.

Autistic children often have spatial problems; of which telling left from their right is only one of the aspects. I don’t know why this surprises me anymore, at this point nothing should.  It just seems like every day I am learning something new about myself; my autistic self.

Things that never made any sense, had no good explanation, made me feel silly, stupid, less-than or alone can now be explained. I have a new set of eyes with which to see myself.

Does anyone feel embarrassment over a seemingly simple task? Fumble over left vs. right? Are there any tricks you come up with to help you come to the correct answer more quickly so no-one notices? Unfortunately, my looking at and comparing my hands, often mimicking writing to remember is not exactly inconspicuous.