Tough Day and a Rose

Just about every day can be considered a tough day when you are a parent of teen boys with autism.  The criteria change daily of what is a tough day.

What may make a tough day today becomes easy to handle tomorrow.  What was easy yesterday becomes the challenge of today.

I know I can chose how to react, and sometimes my initial reaction is not so good.  Even Pollyanna got to the point of not wanting to be happy.

Taking a step back is so important to keep perspective and patience.  The proverbial line of taking time to smell the roses is true.  It's those small moments that can make memories.  Good or bad memories.

So this morning I got up early and stopped at a coffee shop.  I can breath! I can relax. It's short-lived, but it eases the turmoil  Funny how just a simple change of scene helps. 

I found my rose for today.

Time Out For Fun

Nick, Victorious Knight, Cam, and Ryan

Amidst the turmoil of autism, we need fun.  Yes, we need to keep a balance of sensory, safety, and dietary issues.  Consequently, we do a lot of research for any outing.  We found one that would stretch the boys.  Medieval Times!

Think of eating with no utensils.  Ok, maybe not too hard to endure for boys.

Picture a stadium setting with theatrical lighting and roaring crowds.  Now hear the clashing of metal upon metal during the jousting, and breathing of dirt, hay, and whatever remnants of the horses.  For typical kids, this could be a highlight event.  For teens with autism, it could be a sensory nightmare.

We knew the boys loved the movies of the Lord of the Rings.   They thoroughly enjoyed the sword-fighting and chivalry.  They admired the steadfast Aragorn, especially when the odds were against him.  Legolas and Gimli added further dimension of weaponry and defense.  So we drew similarities from the movies to what this Medieval Times would include.

We prepared them for the close contact of the arena seating.  We warned them of the unpredictable lights and sounds.  We gave them possible solutions as to how to deal with these.  They were gamed to go, and they looked forward to eating with their fingers!  (Years ago they couldn't stand dirt or shaving cream on their fingers, so this would have been a concern back then.)

We arrived at the facililty, and the boys took it all in.  At times they had to sit and relax, but for the most part, they enjoyed all the sites and sounds of the retail area.  They even wore crowns/hats!  Then we were escorted into the actual arena.  Food and drink came and went.  The knights on horseback traversed right in front of us as we had front row seating.  Theatre lights blinded us occasionally.  Loud narratives welcomed us and introduced the games as they unfolded.

Throughout the entire evening, the boys were intent on what played out in front of them.  They cheered and waved our banner when our knight did well. They weren't too keen when the horse snorted just a few feet from them.  They experienced the show without problems.  No complaint.  The boys were extremely loud when our knight won the jousting contest. 

Mike and I were relieved when they all concurred that we should return.  And soon!

Some Speech Concerns For Ryan

So what were my actual concerns about Ryan?  I had questions about the testing done by the speech pathologist.  What level vocabulary did she test?  Same with the comprehension passage.  Were these tests at Ryan's grade level or peer level?  The speech pathologist didn't answer.  Mental note to self to get answers at the IEP meeting.

Ryan had been working on comprehension and building vocabulary, which seems to have vastly improved.  He had been working conversation skills as well, but these seem lacking to me.  The pathologist pointed out that Ryan has enough conversation skills to get him through his classes.  His grades, overall, were very good.  She also told me that she was having to search for goals for Ryan.  It was SO OBVIOUS that Ryan didn't need speech anymore.

Well--reality states otherwise.

I had tried to tell her that Ryan almost failed his math class due to his lack of communication, specifically not being able to ask for help.  She countered that kids tend to not do so well in higher levels of math.  I responded that Ryan was always in mainstream, regular math classes.   This became a verbal jousting match.

At the beginning of the school year Ryan, Mike, and I agreed to let Ryan be independent--to see if he could handle the responsibilities and communications by himself.  The lack of communication with his math teacher indicated that Ryan still needs help in initiating a conversation.  In this case, Ryan couldn't ask for help because he didn't understand where he was confused.  The result was placing Ryan in a resource (special ed) math class for this coming semester.  HIS LACK OF COMMUNICATION SKILLS IS HAMPERING his academic success.

On Monday Ryan and I were discussing classes for college.  We searched for writing classes as that seems to be his only interest to date.  He immediately changed the search criteria to include online classes only.  I asked why.  It took some time, but he finally said that he was scared to talk with people, that he was not ready to talk.  He felt he would make mistakes, and people wouldn't understand him.  Ryan still NEEDS COMMUNICATION help.

I also thought about Ryan's other classes.  Over half of his classes were resource classes.  If he didn't require further speech services in school, shouldn't that mean that he could handle mainstream classes as a precursor to handling life outside of school?  I had grave concerns that what testing Ryan may have done in a controlled environment may not be indicative of what is reality for Ryan.

Conclusion:  Ryan needs help in speech still.

Ryan Does Need Speech--Pragmatics

RING.  The phone goes off.  Inside of 30 seconds my day's activity is dictated.  All else fades.  I didn't take the call, but I listened to the message.  It is the high school psychologist, saying that we need to make a decision because she wants to write her report this week.  The IEP isn't until next Tuesday.

I'm confused.  Decisions are suppose to be made by the IEP "team".  I don't like this being rammed down my throat.  Especially since Mike and I don't agree with the decision to stop speech services for Ryan.

I discussed with Mike what points I should include when I speak to the speech pathologist. I decided to send an email for two reasons: I want to remain calm and to ensure I don't miss any details.  Mike read the email and assured me it had the high points.  Then Mike went to work.  I hate doing this on my own; alas, Mama Bear kicks in.  My son's potential is at stake.

Within ten minutes of sending it, I received a phone call on my cell. It was the speech pathologist. The timing was not good as I had an appointment.  She started of by saying, "Instead of reading your email, I saw that there were inaccuracies and we need to discuss this."  She just made my day!  She's NOT going to read the email.  She wants to talk NOW.

I am usually a cordial person, but I refuse to discuss this hastily.  I told her I'd call her back as soon as I could.  She insisted that we needed to make a decision asap.

I attended my meeting, and hurried home.  I called the district office to ask a simple question:  do I have to make this decision before the IEP.  IT was an unusual and odd for a school staff member to push for a decision BEFORE an IEP.

I spoke with the director of special ed department.  I asked about making this decision.  She told me how I could appropriately respond.  I also relayed my concerns about Ryan still needing speech.  After a quick discussion, I was armed with the correct vocabulary. I also verified that my "incorrect information" was, indeed, correct.  I then called the speech pathologist, and left a message about the correct information and what Ryan's speech needs were with the key vocabulary of "pragmatics".

The end result was ZING.  The speech pathologist acknowledged her error.  She read my email and "now understands".  She also agreed with the "pragmatics" and will write her report with new goals.  SUCCESS.

The above actually transpired through a few phone calls and emails throughout the entire day.  I felt I kept hitting a brick wall with the speech pathologist. I needed to be persistent, patient, and grounded which required lots of prayer throughout the day.  Prayers were answered.

Now we await the IEP report.

Speech Pathologist: Ryan Doesn't Need Services Anymore (but...)

Ryan

Last Monday morning, I received a call from the local high school speech pathologist.  She gave me wonderful news that she had tested Ryan on comprehension and vocabulary.  He tested very high.  She indicated to me that Ryan had mastered several goals, and this test verifies that Ryan does not need speech services at school.

Of course, that sounds great!  A parent of a special needs child awaits a life time to hear this.

She told me that she had talked with Ryan, and he agreed that he didn't need services.  He was doing well in his classes.  He could talk when he wanted.  They were mutually happy with this decision.  She just needed me to agree.

I didn't.

Following my gut instinct, I just don't think Ryan is ready.  Then I started to think that maybe I'm being overprotective.  I had to take time to think this through.  Of course, I talked with Mike, and we debated if Ryan was ready to discontinue speech.  We finally decided NO.

First, Ryan doesn't want to do more than necessary, unless it intrigues him.  So to get a chance to not work, that fine with him.  Typical of autism.

Second, Ryan still has communication issues.  Over Christmas break, he clearly demonstrated that he has a difficult time holding a conversation.  He used his catch phrases: "I don't know" and "I don't remember".  He came up with a new one:  "I am not sure".  Other than that, he didn't talk much.

Third, Ryan told me that he didn't like the speech/communication class he was in.  Ryan informed me that he doesn't want to continue this class because there is a "person who talks too much which bothers me" and a person "who has an annoying laugh".  Ryan has always had sensory issues with sound, and this could be a reason for lack of motivation in that class.

So now we need to explore what can the speech pathologist do to help Ryan if this class isn't working.  We also need to convince the speech pathologist that Ryan needs to continue with services.  Not an easy feat!