Tennis Today: Oh--Schedule Change

Today was suppose to be another tennis match for Ryan and Nick--at their home school.  I dropped off the boys (because I have another boy to get to baseball practice).  As I was leaving, the coach waved for me to stop.  I drove closer to him, and rolled down the window.

"There's been a change," states Coach W.  "Today is an 'away' game. Yeah, the schedule says 'home', but..."

Change.  Sudden change.  Oh what fun for boys with autism.

I thanked the coach for letting me know.  I told him that I'd let the boys know.  So I pulled into a parking space and ran to the boys.

Although the rest of the team members were picking up the tennis balls, racquets, and gear, no one had told Ryan and Nick what was happening.  I told the boys briefly that the location of the game had changed.  I made sure one of them had his cell phone.

Ryan seemed to adapt quite easily.  Nick had a look of apprehension on his face. I told Nick not to worry.  I encouraged them to have fun and do their best.  I also said to stay together and call when they were back at their school.  They were the last to get on the bus, but they seemed at ease.

Another round of plans end in a "surprise".  I am bummed that I'll miss this match.  I'll find out how it all turns out when they get back. :)

Putting Out Fires On The O Happy Day

Ryan and Nick after the match

Yesterday Ryan and Nick played in their first tennis match ever.  It was a great milestone for the boys.  Nonetheless, yesterday had its pitfalls.  No matter how well I plan, there is always a surprise!  So what was yesterday's moment?

I wasn't sure that the boys were playing, but if they were, I planned to pick the boys up at 2:30 pm. Due to their diet, they need to eat frequently.  Time was at a premium.  I had 30 minutes to get them home, fed, dressed, and back to school for the match.

The boys showed up at 2:30 pm with the wonderful news that they were, indeed, playing.  YEA.  I asked what they were to wear because they had not received a uniform yet.  They responded, "Red shirt and black shorts," with their school name on them.  I asked if they had the clothes.  They responded negatively.

I knew t-shirts had been ordered, but they had not arrived.  I couldn't imagine the coach didn't discuss what to wear, if the boys were to play.  Ryan said that he received a text from a fellow tennis player.  I recognized the description as a pe uniform, but again, I assumed there was a particular uniform to be had. 

Then I asked, "Can you play without the uniform?"  They replied, "Well, I guess we can't," with total resignation.

I didn't understand.  They were happy to play, but giving up so easily.  ??

By this time I was out of the school parking lot.  I managed to turn back into the parking lot, parked, and we ran. I told Ryan we needed to find the coach.  We ran to the coach's room, only to find it empty.

Trying to think fast and failing to stay calm, I asked where the spirit store was. I knew we could get a pe uniform there.  Maybe there was "the uniform" we were searching for. We eventually found the spirit store, and I explained the situation to the clerk.  She made a few phone calls.  She told us that the team had left on the bus.  After a few minutes, she clarified that was the girls' team.  Another moment of slight panic and relief.

I asked if we could just get the basic black shorts and red shirt.  She gave me a few sizes.  And we guessed what would fit each boy.  Within a few minutes, we were out the door, running back to the car.

I gave specific instructions to the boys as we now had ten minutes to dress, eat, and get home and back to school.  We successfully did it, but for those 30 minutes, I was presented with a problem and had to solve it on the fly.

The boys and I did solve it.  On the court, no one had a clue what our last 30 minutes had been like.  From the high of the news the boys were playing to let down of not playing. Then back up to finding the uniform and getting everything the boys needed.

The boys were dressed like everyone else. They were part of the team. I'm still not sure if they missed something the coach said or not, but at this point it doesn't matter.

Another day in the life of autism!

O Happy Day!

Ryan about to serve

In the midst of trying to resolve issues, there is a bright light.  AND did we celebrate.

Ryan and Nick played in their first tennis match on their high school tennis team.  Ryan tried cross country, but the endurance was too much.  I bet the desert heat didn't help during the summer either.  Nick did track and field in junior high, but his heart belonged to an event that he didn't get to do.

Mike and I have introduced various sports in the past.  Some were too expensive to continue.  Others just didn't capture the boys' interest.  So why tennis?

Nick returning a serve

My parents have played tennis for as long as I can remember.  I tried playing, but I spent more time running after the balls that went over the fence than playing on any court.  The boys had a few lessons from their grandparents when the boys were very little.  What made it stick this time?  I don't know.  I don't underestimate that the girls' team might have some influence.  The girls and boys' tennis teams practice at the same time.  Hmmm.

What I do know is this is a HUGE milestone for the boys.  Many years ago, the boys had several issues to overcome.  Nick couldn't stand to wear socks, let alone shoes.  As they developed autism, their gait became abnormal.  Walking and running were dangerous.  They lost their balance easily.  Ryan ran with his eyes closed.  I was told this was a sensory issue.

Ryan serving, Nick at the net

I became a soccer mom of therapy.  Days on end of traveling from school to therapies--physical and occupational therapies (among other therapies).  I made sure they had adaptive PE in school.  Years of therapy.  Miles of driving.  With no guarantee of improvement.  Just hope.

Today is hope fulfilled.

Coach W with Nick

Ryan and Nick played in a real sport at school. Their matches were even next to each other on the court. They played in the singles and doubles.  They were actually the doubles team.  The coach guided them at times.  Otherwise, they played.  On their own.

Those years of therapies have paid off.  My boys may have a hobby for life!  Priceless.

Time Out For Mom And Dad

Simple date night

Life with autism.  Just like any life, autism presents many twists and turns in life.  Sometimes other people hold the controls of my kids' lives, and that is difficult to accept.  Frustration and patience!

One lesson I have learned is that Mike and I need to take time together.  We rely on each other to get through the issues that autism presents, so we need to ensure that our relationship is alive and well.

Sometimes focusing on us helps me get through some tough times.  Like the other day.  Problems were mounting, and there was nothing more I could do but point them out to certain people who could correct them.  Nothing was immediately done.  Disappointment.  URRRGG.

I decided to surprise Mike.  With money lacking for "extras", I came up with a very simple date night.  Some candles, glasses, champagne, and a rose.  I sent a picture to his cell phone.  He said that I made his day.  Yea.

That made me happy! :)

Frustrating Week

I received Ryan's IEP report.  There were inaccuracies in it.  What's worse, is that the state agency received the IEP before I did.  The state is satisfied with the IEP, and says that Ryan's case is ready to go to the "redeterming" board--or whomever judges that.

I was stunned.  Why would the state be willing to knowingly accept incorrect information when the status of his disability could be jeopardized?  I thought we agreed that we want what is best for Ryan.

Also, I pointed out to our state case manager that there was no psych report included in the IEP.  She seemed to ignore that.  She replied that the MET simply wasn't done.

I asked the school psychologist if there was a report forthcoming.  I received it the next day.  I then forwarded it to the state case manager.  Her response, "Oh, I didn't have that."  It seems she didn't pay attention to my pointing out that the report was missing.

Then there's trying to correct the wrong information.  No one knows who or what the source was for that info.  It's taken a few days, but I think it's been corrected.  I had to write to several people, but patience there has paid off.

This has spun more questions and controversies, though, so there were several more problems to solve.

Just goes to show why the puzzle piece is the emblem for autism.  As soon as you think you have something figured out, SURPRISE--there's another piece to fit into the puzzle of life.

Autism At 18: Government Needs A Renewed Diagnosis

Government agencies and doctors claim that autism is not curable.  So why does Ryan have to be rediagnosed with autism at age 18.  He's now a legal adult, but how could that change his disability of autism?

Our previous state case manager said that he needs to be "redetermined" to be autistic, basically because the law says so.  I think otherwise.  I think it has to do with economics.  Money.

Not only does Ryan need to meet the criteria of autism, which is deficiencies in three of six specific categories.  Ryan must be "sufficiently deficient".  What does that mean?   No one could answer that.

We now have a new state case manager.  I get the impression that she is new to the whole system.  She is very polite and professional.  And new.  It takes time to develop rapport and trust.  That adds an extra dimension to this whole process.

The most frustrating part of this is that both case managers seemed to assume that I knew all about this "redetermination". My kids have been in the state system since 2007, and never has anyone ever said that they'd have to be retested.

This brings up so many questions as to what might happen to Ryan.  Just a few:  What will happen if he loses services and therapies?  What type of training might be available that Mike and I can afford?

Again, it comes down to prayers.  I pray that we are guided to help Ryan in the best path for him.  I pray that the psychologist and speech pathologist give appropriate tests to assess Ryan's true abilities.  I pray that Ryan does his best.

We now wait for the results of the tests.  Nothing like waiting!

Valentines Day Dinner: Eat Your Heart Out!

So the boys are gluten free.  Unless I grind the grain at home, but that's another story.  We decided to make pizza out of homemade sourdough.

The shaping of the heart took some time since the dough wanted to stick to fingers.  Twas a good sensory test.  Tacky, sticky foods on  the boys' fingers used to be a trigger for meltdowns and tantrums.  I like to ensure the boys have not lost the progress made regarding their tactile issues, so they "get" to make meals like this occasionally.

Dough in oven at 350 F for 20 minutes.  Out pops pizza ready for sauce.

Yes, sauce is homemade too with homegrown basil and organic garlic. Now it really looks like a heart!

Of course, sausage and cheese are a must to complete pizza.  Nick liked cooking the sausage best.  He just had to "taste" the sausage to make sure it was well cooked.

It took about an hour to make and cook, and about 5 minutes to eat!

Happy Valentines Day!

Autism: Many Travel The Road

Autism:  unknown road full of twists and turns

Last week I received a call from my aunt about her grandson being recently diagnosed with autism.  She asked for some general information.

Two emotions go through me every time I receive a call like that.  The first emotion is sadness for the child and the parents, another family having to face the difficult road of autism.  The second emotion is hope, but where to begin, meaning what information can I quickly give my aunt?  There is so much.  It's a daunting task to quickly assess and surmise what information will do the most good.

Also, within the last weeks we had Ryan and Nick's IEP meetings.  (To my dear aunt, that stands for Individual Educational Program, which briefly is the meeting of parents and school staff to determine classes, goals, therapies, etc. for Ryan and Nick.)  Anyways, I was touched by what Nick's case manager said.  She said that her son has autism.  Although he isn't a high functioning as Nick, she hopes that her son will be independent enough one day to enjoy a hobby.

I am moved by both of these events.  One family is at the start of autism; they probably have no idea what is ahead of them.  Another family is traveling the road of autism; they have some idea of the future.

Then there is my family.  We've been on the road for years.  We must be having some success because others see our boys as "not that severe" or "high functioning" or "borderline".  My sons were not diagnosed with autism spectrum or high functioning autism.  They were diagnosed with autism.  They had many symptoms:  ticks, sensory issues, processing issues, dietary issues, etc.

After years of tons of therapies, life is improving.  It takes time, but the more done early on, the better chance for the boys to be independent.  Ten years ago, no one would have foreseen my boys as high functioning.  Even five years ago, things were tough.

To my aunt, I don't know if you remember on your wedding day, I was in tears at the reception.  It was autism related.  The boys did have some issues, and it was difficult to handle.  There was also miscommunication with my husband, which didn't help.  Being in public is a challenge, but doable with a lot of patience and prayer.

To my son's case manager, keep plugging along.  You just don't know what the potential is.  I've been asked when will I recognize that my boys' have hit their potential.  I answer, "The day I die."  Not to be morbid.  Tis a fact of motherhood.  I love my boys, and I'll stop at nothing to help them.  Of course, that also includes stepping back and letting them fall as well as pushing for that next slight step of independence.

There's no guarantee of anything in this life of autism.  Lots of hope and prayer, along with diligence, persistence, and patience.  When there is that step of progress, oh, what JOY we share! 

photo credit:  http://www.flickr.com/photos/geodesic/

Laughter and Prayer: The Best Medicine

Good night, my Guardian Angel.
Tomorrow is another day. 
Rest well. 
I'm sure you'll need it. 
I know me... ha.















photo credit:AlicePopkorn's photostream (1,180)