Short End of the Stick

My youngest son, TL, is a HANDFUL.  Ok, that’s putting it mildly.  His body is in constant movement and his mouth is forever moving.  He has a lot going on in his little mind and it just overwhelms his 4-year-old body.

But he is a sweet boy. He loves to play (not share, but play!) and loves to talk. He loves to be read to and he has a very active imagination…maybe too active.

You see, he also like to tell “stories” –fibs, lies, whoppers—whatever you want to label them.  It can be hard to sometimes tell what is true and what is part of his imagination.  His teachers, in particular, have had a hard time telling fact from fiction.

Here’s my favorite one:

Teacher: “I heard you’ve got some moves!”

Me: “Excuse me?”

Teacher: “TL was dancing on the playground and when we asked him where he learned to dance like that he said his mom taught him.”

TL chimes in: “Yeah, mom, like this” and he starts to dance while shaking his booty in the air. 

If you know me, you know I have never danced this way.  No twerking for this girl.

Anyhow, he has been in the same class for almost 2 years and the teachers have finally begun to see that many of his outlandish stories are works of fiction.  That’s good—um, maybe not. 

He has become the “boy who cried wolf.”  Now, when I bring up a concern about something TL says happened in class I get the response, “well, I’m sure it didn’t happen like that, but I will keep an eye out.”

Ugh!!!  Look, my son tells great stories, but it is pretty easy for me to figure out when it is the truth: I ask questions.  Usually the fictional stories will end up involving aliens, cartoon characters, him driving a car…some kind of dead giveaway.  Yet, trained professionals think they can just dismiss something my son says another child said to him?  His story did not change when I asked him about and it did not change when my husband asked about it.

But, much of life and our relationships is built on trust and it can be hard to trust a really good liar. What do I do? I can’t make people trust him. The incident from above is not something worth pursuing unless it repeats, but I am still angry!  Why does he get the short end of the stick with something he can’t control?  We have been told that his imagination is so active that he sometimes has a hard time keeping it out of the “real” world.  We have been over all the highlights of why lying is wrong and he usually ends the discussion with, “what is lying, mommy?”  Cue palm hitting forehead.  

He doesn’t know he is doing something wrong.  He thinks he sharing a lovely tale he wove together. He doesn’t understand trust and truth.  He’s 4!!!  He’s autistic!!!  Give him a break not the shaft! Ugh!

Black and White

There are some people that see things as either one way or another. That describes my youngest, TL, completely. Take what happened yesterday. My husband took the boys to The Tech Museum and TL overheard that food and drinks were not allowed inside. This was all he needed to know.  He soon was telling total strangers that they were not supposed to have food there. He didn’t make room for exceptions and didn’t know how to ignore the lawbreakers.  It was simply black and white.

It’s like that a lot in our house. The whole process of explaining strangers to TL has been daunting. The social exceptions, like the old lady commenting how cute my daughter is or the man lifting his hat (people still do that!?) and saying good morning, are all lost on him. He takes these interactions to mean he can talk to any stranger. Then if we explain that a certain person is a stranger, that means all people that look this way are strangers. Or that kids can’t be strangers.

Concrete thinking. That’s what this style is called by professionals. Everything is literal and hyperboles can result in some really amusing misunderstandings. Rules are rules and if he has to follow them (though he rarely does) then so should everyone else. He kind of exemplifies the saying “do as I say and not as I do!”

What makes things even more difficult with TL is that he is VERY outspoken.  He has no problem sticking up for himself and voicing his opinion.  This can be a bit embarrassing at times. Like the time he shouted at a lady pushing a grocery cart down the street with her child sitting in the large part of the cart.  Oh, my, did he have lots to say then.  “Why are you pushing that cart?” “You’re not in a grocery store!” “Why is the kid riding there?” “That’s dangerous. He should not do that.” He was right on all accounts but…it was not his place.

Or was it? Maybe we need more people that see things for what they are and will speak up when something is wrong. Maybe we are supposed to gently guide outspoken children into the activists, preachers, leaders, of tomorrow.  

Maybe instead of using black and white thinking in our labels, we could see that each person has a value higher than we could ever imagine. Instead of dwelling on the embarrassing episodes, we can remember that someday we view those memories as the start of someone really, really  great!

Recognizing Your Limits

Well, it is been awhile since I penned a blog, but I have good reason—I had our little girl, SG!  She is 3 weeks old tomorrow and a true little beauty.  She was born cesarean and that has been a true test for me.  I have had to recognize my limits and—shudder—give control to others.  It has been a growing experience for our whole family.

Yet, it is not the only way I have had to recognize my limits.  Something happened today to take me back to a place I was in 7 ½ years ago.  At that time, TJ was still an only child and just started his mainstream kindergarten.  We wanted it to work so badly—and it might have if it wasn’t for one rotten teacher. 

Ms. S was a kindergarten teacher with a chip on her shoulder.  She complained as much as she could to parents about the lack of district funding for school supplies and lacked any kind of professional demeanor.

Now, TJ was not a difficult child, but he needed guidance in the classroom.  She hated that.  She stated to me (in front of him!!!) that if he was autistic he belonged in an autistic classroom.  She stated that he was horrible at cutting, drawing, tracing, etc…all in front of him.  When I attempted to set up a meeting with the principal about her, she showed up as well.  They decided that TJ’s issues were behavioral and wanted to set up a behavioral plan.  They would not agree to change his teacher.  They would not budge.

The results from this:  TJ suffered from dangerously low self-esteem for years (to the point of self-injury) and would often repeat some of the things she had said about him.  We pulled TJ out of school the day of the meeting.  I homeschooled him for a few weeks and then we enrolled him in a private school for the remainder of the year (another horror story, but I digress). 

Anyhow, after submitting a complaint to the district, I tried to put it in my past and work on making the present and future better for TJ.  I never saw her again…but that almost changed today!  During a family jaunt to Target, my husband turned to me and said, “Ms. S was here.”  What? Where? Let me at her!

Apparently, she had come near us as we were perusing the salads.  She probably vaguely recognized us and was hoping to surprise a former student.  Suddenly, she turned tail and disappeared; probably remembering exactly who we were and why she shouldn’t say hi.

God knew my limitations.  That is why my husband saw her and not me.  That is why my husband had the wisdom to alert me after she left.  I really don’t know what I would have done if I saw her.  I can imagine several scenarios that would have ended with me in handcuffs.   Or maybe I would have showed my wonderful son off to her, pointing out that this “horrible cutter” was a gifted student, kind-hearted son, and all-around wonderful person. 

But I guess her running away says it all:  she screwed up.  She bullied a student and two parents.  She made a student feel worthless.  She has to live with that.

As for me?  I will tuck this away in the past again and know that God knows my limitations and will not put me in a situation I cannot handle.

Please Don't

There are already a plethora of these blogs on the internet right now, but I needed to say my peace.

Please don’t compare my sons to Adam Lanza.

Please don’t blame a neurological disorder for this heinous crime.

Please don’t make autism or Asperger’s synonymous with mass killings.

Please don’t jump to conclusions about a mother you never met.

Please don’t distance yourself from a child because they have autism.

Please don’t compare the physical outbursts that can be triggered in autistics with a planned massive attack on innocent school children.

Please don’t make it even more difficult to tell you that my sons are autistic.

Please don’t believe everything you read or hear about autism.

Please don’t make my sons and others like them into modern-day lepers.

Please….don’t.

Maybe Someday

Sometimes things happen that really shine a spotlight on the difference between my boys and their peers.  Yesterday was one of those times. 

My older son, TJ, got invited to a beach party with some of his friends that he graduated elementary school with.  We all went hoping for the best.  What I got was a big dose of reality.

Let me preface this by saying that I don’t keep my boys in a bubble.  We do, however, monitor situations and decide what is appropriate.  I thought yesterday would be great for both boys.  And, as far as they are concerned, it was.  For me, on the other hand, it was an eye opener.

TJ was so happy to see some of his old friends and settled in to help one of them build a sandcastle.  Except for the reminders I had to give him to pull up his shorts and keep his bottom covered, things were good.  Then, more friends showed up.

Some of them were boogie boarding.  We have never had TJ boogie board, just because he really still doesn’t know how to swim well unsupervised.  It’s a coordination issue, but that is another blog.  Other kids were striking up conversations with each other.  Uh-oh.  I know this is hard thing for TJ, but I figured he would be more comfortable since he went to school with these kids for so many years. 

I saw him standing around by the sand castles and looking so confused.  I could practically see the thought bubbles above his head:  “Where is everybody at...Oh, they are talking over there…I wonder if someone will come and build something with me…Man, it is hot…”

He walked over to me and told me that he was bored.  I pointed out that his friends were all over there.  He should go hang out with them.  I mean, that is the whole reason why I lugged my pregnant self across all this sand, right?  Of course he was still left not knowing what to do.  He finally went wading in the water, only for his friends to decide it was a great time to play volleyball.

TL was having a better good afternoon.  He dug in the sand, made his father make countless trips down to the surf to fill buckets of water, knocked over the sand castles the bigger kids made, and threw sand at people.  While some of these behaviors were annoying, no one said a peep and probably wrote it off as typical bratty kid stuff. 

Things took a turn when he decided to go and grab a 3-foot shovel from some kids down the beach.  They were total strangers and he just grabbed the shovel and said it was his.  He swung it around wildly and told them they were not nice.  The kids (and their parents) looked at TL like he was Chucky, while I tried to count to 5 and tell him to put the shovel down (and just where was I going to give him a time out on the beach?).  That seemed to work, but it was obviously time to go.

Now, it is not like I didn’t know that my boys have problems in social situations.  I use all the right phrases (social awkwardness, lack of social cues, socially challenged), but sometimes you just see it, right there, and it makes my heart sink into my stomach. 

I like what John Schneider from the old show Dukes of Hazzard once said, “But some things that most children just kind of learn by osmosis need to be taught to a child with Asperger's”—or autism.  I realized yesterday, just how much more I still need to teach my boys.  Maybe someday, a trip to the beach with friends will actually be relaxing.  Maybe someday…

Hating the Burden (Substitute Your PC Word Here)

I laid down on my bed tonight and cried after my youngest son went to bed.  Not just a little cry, but a full-on sobbing fit.  It was one of those days today.  One of those non-stop autism days. 

TL spent the day being stuck on certain things (perseveration), being defiant, needing sensory input, and just being plain ol’ difficult.

This all culminated with a battle over the clipping of his toenails.  TL has always fought us on clipping his toenails.  We have tried every bit of advice we could get our hands on with little or no success.  Clipping them while he was sleeping didn’t work.  Using the nail scissors didn’t work.  Using a soft nail file/buffer didn’t work.  The problem is that he doesn’t want his toes touched—at all.  They are very sensitive from all the toe walking he does and the skin on his toes often gets dry and irritated.

But, we finally have had some success with a reward/motivator/distraction technique; we let him play with some magnetic toys that had belonged to his brother.  He is only allowed to play with them during nail time, so they keep him busy while I do the clipping…that is, until tonight.

Tonight, TL was just not having it.  He fought and kicked and screamed and cried and scratched and swung around the whole time. He finally wore himself out enough that the toys looked good again and he gave up. He didn’t fight me again until I rubbed some lotion on his dry toes. He went to bed exhausted and I collapsed out of exhaustion in my bed.

I cried uncontrollably and lie there hating autism, hating the simple chores that turn into wars, hating the behaviors that are not easy to explain or deal with, hating…the burden.

I know that "burden" is a word that will set off a few people, but sometimes that is the best word to describe it.  There are others:  challenging, relentless, daunting, overwhelming, frightening, all-consuming...

I also know God is there to help me. But when I am restraining a very strong preschooler from kicking my pregnant belly, I don’t always feel Him.  Instead, I feel the weight of this burden of autism.  Having two sons has widened my view of autism, but it has also widened my load. 

I still praise God for the blessings that have come with autism and my two beautiful boys, but I also get exhausted…exhausted from carrying such a heavy burden. I just have to learn to put the burden down more often and rest in Him.  Only He can restore my soul and get me recharged for the next day–the next battle.

So, tonight I cried and I cried and then, I got ready for tomorrow.

How Can I Complain?

Seriously, how can I complain? Yes, I have 2 boys on the autistic spectrum. And, yes, there is a chance that the baby I am carrying will have it too (Surprise! I’m pregnant!).  But, my children can talk. They can even argue with me.  Some children on the spectrum can never do this. Some children are almost completely unable to communicate in any form. 

I remember that short time when both my boys were that way. It was heartbreaking.  It was bleak.  It was a desperate time.  Fortunately for us, ABA and speech therapy gave my sons the tools they needed to communicate.  Now, they are not “cured” by any means—I think I have well established on this blog that I don’t believe that is possible, nor do I want that for them.  They still have their quirky ways or “ticks” as a friend refers to them.  I still have to make accommodations for them and think ahead for ways to meet their needs.

We have a trip planned to Seattle in early July to help take part in a genetics study on autism.  It is our first airplane trip as a family.  The thing that weighs on me the most is how my youngest son will do on the plane.  Noisy normal toddlers are thrown off planes.  My preschooler takes noisy to a whole new level and simple doesn’t know how to sit still for two hours.  I just continue to pray about it and find things to pack in our carry-on bags to entertain him.

But, the thing is that I can entertain him. I can find techniques that work (albeit for a short time).  Some parents are not that lucky.  Some parents feel so desperate that they turn to alternative medicine voodoo to “cure” their children.  They put them on restrictive diets and cling to any sign of improvement.

Some parents give up on their children.  Some parents resort to violence in an insane attempt to “beat the autism out.”  Some parents go numb.  Some parents go into denial.  Some parents fight each other.  Some parents blame themselves.

So, I ask again, how can I complain?  I got two beautiful boys and a third child on the way.  I have a supportive husband that works with me to raise our children.  My children have responded well to the scientific approaches to autism. 

I am truly blessed by the load that God has allowed me to carry.

This Year

I haven’t written anything this month, which is a stark contrast to last April when I had half a dozen posts.  There are reasons for that, one of them being that April is Autism Awareness Month.  Last year, I was just beginning to deal with TL’s newly diagnosed autism.  I seemed to saturate myself in all the autism-related articles that pop up in April.  This year was different.

This year I am focusing more on what I can do to help my boys. 

This year I am ignoring the propagandist articles about “causes” or “cures.” 

This year I am pretending that Jennie McCarthy and her Generation Rescue movement do not exist. 

This year I am refusing to question God about Autism.

This year I am concentrating on loving and supporting my family.

This year I am only thinking about educating those that want to be educated.

This year I am not so filled with anger at the parents who do GFCF or other wacky diets.

This year I am having more grace for ALL the parents struggling to cope with autistic children.

This year…I almost forgot it was Autism Awareness Month (I thought it was a little weird how there were SO many stories about Autism popping up!)

This year is about the gift God gave me in my boys.  It is an awesome gift that I cherish more and more every day.

One Obsession for Another

Most kids have something they really like and could talk about for hours.  For me, it was Barbies.  I loved them and could dress them up all day…but there were other things I liked to do too (Chinese jump rope, coloring, writing, etc).  Children with autism take hobbies to a whole new level. 

TJ, my oldest, tends to have very intense interests (or obsessions!).  There is a misconception that autistic people are static, never changing, but the fact is their interests evolve over time like you and I. 

He has been obsessed with Hot Wheels, Transformers, Bionicles, Transformers, Legos, Transformers, Garfield, Transformers (keeps coming back to this!), and, now, ice hockey. My husband and I are San Jose Sharks fans and have watched playoff games before.  We never really watched the regular season—until now. 

TJ has become very “fanatical” (self-description from TJ) about the Sharks.  I took him to the Sharks store and he was in 7^th heaven.  He wanted everything!  He has started collecting NHL cards…they have those?  He wants to see the league stats after every game.  He dutifully wears his Marleau shirt every game day.  He talked the ear off one of the counselors at a special need camp he attended because she brought up the Sharks.  He absolutely loves the Sharks! 

But so do a lot of other boys his age.  What makes it different?  The intensity.  The lack of social appropriateness.  We could be having a conversation in the car on a totally different topic and he will all of sudden spew out a stat or game highlight. 

So what to do you do with that?  Do you fight the obsessions?  Do you cave?  Neither.  There is a balance somewhere in there.  We use his interests as a way to spend time with him.  It is a way to bond and share a common interest.  But we also set limits.  If he wants a new Sharks jersey, he can buy it with his saved up allowance money.  No staying up super late for games.  We will only allow the topic to be on hockey for so long before we change it. 

I know it will not be long before he changes to something else to fill his time—probably Transformers again.  But for now, I enjoy cheering on goals with my son and feeling more connected to him that I have in years.

The Latest Adventures in Autismland

It has been an awfully long time since my last posting and there are many reason for that—too numerous for one posting.  Here is a summary of what has gone down.

• TL was assessed by the school district and we had an IEP.  We were given the assessment report ahead of time, which clearly stated he was eligible under autism and speech.  The same report was handed out at the meeting.  They only offered him pragmatic speech (25 minutes/2 times a week).  We agreed with the caveat that if it didn’t work out we would call another meeting.  We signed and got a copy of the IEP.  Conveniently, we found that the final IEP did NOT have the autism eligibility.  We addressed this in writing (it forces the district to put a response in writing).  They denied this ever happened.  Then, in an about face, they changed his eligibility.  He is now at a preschool for mild-to-moderate autism 5 days a week for 3 hours a day.  It is helping him so much!  He also was found eligible for continued services by the regional center.  This means we get respite and a behaviorist that comes to our house to consult.
• TJ was assessed by the school district and found ineligible for services once again. This time, we did not sign the IEP in agreement and we tape recorded the meeting.  I am pursuing the fact that his scores indicate a learning disability in math. (Hey, eligibility is eligibility and truth be told he has always struggled in math).  They have never scheduled a follow up meeting, so we are currently addressing that.
•  I have been diagnosed with depression.  This is a real private issue and I debated a lot about including it here.  The fact is there are many parents of special needs children that suffer from depression. The article, “Some Moms of Autistic Kids Prone to Depression,” really rang true for me.  I am getting treatment and feel better every day.  I am learning to lean on God more and have joined an awesome Bible Study group.  The fact that I can write this blog post is HUGE.

Look for a new post in the next few days about my latest journeys with the boys!

Hitting Below the Belt

What do you do when you find out your child was beaten up at school?  Panic?  Get angry?  Cry?  Hug your child?  Pray? I did all these things a few weeks back  when I found out my older son was beaten up in middle school—not once, but twice—on a Friday.

I had been running late that day because of a meeting with SARC.  I was trying to get services for TJ, but they were gently letting me know he was too high-functioning for their programs.  I was late coming from that meeting, which made me late to pick up TL from his preschool.  That, of course, made me late to pick up TJ from school. 

I rushed over to the middle school and he hopped into the car.  I began my usual questions about his day, when he interrupts me, “Mom, I got to tell you about some bullying that happened today.  I was beat up in the bathroom…and in PE.”

It was like I was punched in the gut and the air was stolen out of my lungs.  I hyperventilated—I rarely hyperventilate.  I called my husband in a panic.  What do we do?  Why did this happen?  What was done about it?  Why weren’t we called?  Why did it happen twice?  How do I get these answers????

I gained some composure and circled back to the school (yes, I was driving during this panic attack, something I don’t recommend).  I marched to the office and bristled when a boy running with the track team said hi to TJ.  Was he one of the bullies?  No, TJ assured me. 

Still breathless, I swung open the door of the office and stated that my son was beat up.  I wanted answers.  The school receptionist immediately radioed the Assistant Principal of Discipline.  He came down and took us into his office.

I just got to say that it was only by the hand of God that TL behaved in that office.  There were so many temptations for him, but he was able to control himself while I spoke with the AP. 

The AP was very understanding of my point of view and revealed that he was bullied as a child in middle school and that he had a child on the spectrum.  He told me that both boys involved in the attacks were suspended for one day and that they would be expelled if they bothered him again. 

Apparently, these boys had been teasing TJ in PE class for a few days.  They said he was too short.  That’s a reason to beat another kid up?  Really? 

I guess it came to a head on Friday after they swam in PE class.  TJ had just finished showering and the two boys came up (we’ll call them Boy D and Boy S) and started pushing him.  They kicked him and called him names. Boy D was the ringleader and Boy S followed along.  Another student came up and told them to stop.  Where was the PE teacher?  On the other side of the locker room turning on those showers. 

TJ got changed and went to his next class.  Like a typical bullied child, he was too afraid to tell.  If only he had told….the next attack was much more vicious and scary. 

At lunch, TJ went to the restroom nearby.  He entered and saw Boy D there.  TJ didn’t have the response I would have had:  run away and use the restroom later.  Instead, TJ continued into the bathroom and went about his business.  When he was about to leave, Boy D cornered him.

“You bitch!” he growled as he slugged TJ.  “That hurt,” TJ stated.  Then Boy D proceeded to punch him more, push him to the ground, making him hit his head.  He kicked him and hit him over and over again.  He only stopped because a group of 8th graders came in and yelled at him.  Not so tough now, huh?  I am so thankful for those 8th graders.  Who knows how long this would have gone on if they didn’t come in? 

TJ’s close friend came in and helped TJ walk out of the bathroom.  Crying, his classmates comforted him and asked if he needed anything.  TJ didn’t want anything.  He just wanted to forget this all happened and finish his lunch.

After he ate, he went to his next class and pretended everything was normal.  But it wasn’t.  And the other kids knew that.  Some of the kids reported what happened to the AP.  TJ was called out of 5th period to speak to the Principal and the AP.  He told them everything.  Well, mostly everything (he left out the part where his head was hit). 

During my meeting with the AP, the Principal came bursting in.  My husband was on the phone—steaming mad.  Oh, boy.  He doesn’t get mad often, but when he does—just think pit bull fighting for a juicy steak.  I spoke with him in hopes to calm him, but there was no talking him down at that moment.  His son was beat up and he was trapped at work. 

After talking to him and assuring him I was handling things, I finished the meeting with the AP.  He did offer to switch TJ’s PE class, but I wondered if that would really help.  He has three classes with Boy S and Boy D cornered him at lunch.  I let the AP know that homeschooling was an option we were considering.  At least I could keep him safe there.

After all was said in done, I walked back to the car with a very tired toddler and an overly happy preteen.  It was then that I started noticing that TJ was too “okay” with everything.  I knew the other shoe was going to drop.  It was just a matter of time.

I went and picked up my husband from work and we took TJ to the emergency room to be checked out.  There were no visible bruises, but I was worried about the blow to the head.  He was also punched in the ear.  He had ear surgery in late August to remove his ear tubes, so I was worried about the hit having any affect on the healing.  Of course, another great reason to go to the ER was documentation of the attack. 

That weekend was tense.  We had countless conversations about the exact details (everything comes out in trickles with TJ).  We discussed why it was important to tell an adult.  We looked up resources on bullying and were surprised to learn that October is Bullying Awareness Month.  Great timing (she says sarcastically).  Of course, this was a good thing, though.  It meant there was so much info on the web and in the news.

TJ struggled all weekend with his emotions and finally broke on Monday after school.  He acknowledged all the feelings and hurt.  He was scared to go to school on Tuesday, since the boys were going to be back. 

Thankfully, God led us to sign TJ up for a free life skills class weeks ago called M-Power.  That Monday was the second monthly meeting and the topic focused on “Self Talk.”  I let his leader know what happened and she was very grateful for the information.  When we picked him up, she told me that he shared his experience.  He told the group about the beatings.  He did it in his typical a-matter-a-fact way, but he did it!  It was the first step in a long road. 

He has since his private psychologist and we have purchased a bullying book aimed at preteens and teens to go over with him.  There have been no reoccurrences, but I still worry.  I jump out of my skin every time I get a call from the school during the day.  I am scared to hear the answer to “how was your day?”  I pray that one day I will be able feel that he is safe at school.  Until then, I pray that he is able to heal from these horrible attacks.

Sometimes Helpless

I have been spending the last few weeks writing letters.  Letters to the state trying to appeal the school district’s decision to not assess TJ for an IEP.  Letters to our insurance company trying to get them to cover TL’s occupational therapy.  Letters upon letters upon letters.  I am doing my best to get my boys what they need, but I still feel helpless.

I don’t feel like I can really help my boys.  I tried, unsuccessfully, to teach them both to speak.  They both needed therapists in order to accomplish that.  I try to understand the head banging, spinning, and thrashing, but I need occupational therapists to explain why my boys are doing that.  I try to teach TJ how to read social cues, but he just doesn’t get it.  He needs more.  They both do.

At times, I have 6 different professionals telling me what to do to help TL.  That’s 6 noses in my business, in our family, in our home, telling me how to raise my son.  And people think the “suggestions” from in-laws are intrusive!

Sometimes, autism just paralyzes me.  I second guess my mothering skills.  I throw my hands up in disgust.  What can I do to help my boys?

I can fight.  I can be their voice.  I can be their advocate.  I can…write letters.  And I can make phone calls and I can research special education law (not an easy task, but I’m up for it).

But is that all I am for my boys?  Am I just the mommy warrior?  Sometimes I feel that way.  Then, Saturday night, I get an email from the supervisor on TL’s therapist team.  She wrote:

You have been so incredibly supportive and patient throughout the months and the sometimes not so smooth transitions and glitches on our part! It is so nice for the therapists to be able to work with a mom who is so dedicated and kind. Until I'm a parent, I don't think I'll be able to fully appreciate the toll [TL’s] therapy, OT and preschool schedule must take on your family, but it is clear to see you somehow manage it all as [TL] is always happy, serene and ready to go!! It is always wonderful to see this!

I do that?  I make it is easy for them?  For him? 

I may not be able to take a hands-on role with my children’s development—that may have to remain in the hands of the professionals—but I help to keep all this running.  I help make sure the boys get their downtime, their mommy time, their daddy time, their brother time, their social time, their church time, and their therapy time.

I couldn’t do that without God.  In the words of Apostle Paul:  “I know what it is to be in need, and I know what it is to have plenty. I have learned the secret of being content in any and every situation, whether well fed or hungry, whether living in plenty or in want.  I can do everything through him who gives me strength.” Philippians 4: 12-13.

In Retrospect: Looking back to move forward

Whenever you look back on your life, you can see all the mistakes, all the missed possibilities, all the what-ifs.  It is easy to nit-pick and question everything when you look back—like I did today.

We are trying to get TJ an IEP.  It is our 4^th try since he was “graduated” out back in preschool.  Back then, we were told he was past grade level with his speech and there was nothing more they could do for him; he didn’t need special education anymore.  Nothing more they could do, ha!

Anyway, we were young and inexperienced in special education.  We had not been jaded yet.  We figured the professionals knew best and that they were truly doing what was right for him.  He was mainstreamed that next fall into a traditional kindergarten. 

His year started off bad and progressively got worse.  His teacher was not at all understanding about his problems and said demeaning things in front of him.  She said he could not cut, could not color, could not write.  He heard all this and started to believe it.  He started self-injurious behaviors and we started having him see a private therapist.

We tried to set up a meeting with the principal and the teacher, but when we got there we were ambushed us with a behavioral plan meeting.  They really were not looking out for his best interest.  We immediately pulled him out of the school and I homeschooled him until we found another placement—preferably out of the district.

That ended up being a private Montessori elementary school that was way out of our financial abilities.  Going more and more into debt each month, we were hoping this school would be the answer.  After all, Maria Montessori developed the educational approach specifically for special needs children in Italy.

Boy, were we wrong.  TJ was bullied at the school.  TJ was sent home early many times for disruptive behavior.  TJ was not allowed to be evaluated for moving up to their 1^st grade class because they didn’t think he would be a good match.  TJ was not allowed to go on the kindergarten graduation field trip.

We tried to go back to the school district and ask for an IEP, but we were turned down.  Why?  Well, they knew how to play us…they told us that all his behaviors were because he was gifted.  They showed us charts that put his IQ off the charts and told us that the private school just didn’t know how to handle his advanced educational needs.

What parent doesn’t want to be told that the only problem with their child is that they are too smart?  It was the perfect way out for them.  Don’t get me wrong, I know my son is smart (both of them are), but his behaviors were from more than just being unchallenged.

Anyhow, unable to continue at the private school, but we were able to convince them to let him “graduate” from their kindergarten class.  We ended up looking back at what our district had to offer.  We decided on a Montessori magnet school our district has.  We figured the unstructured model of Montessori and the educational standards of a public school would be a good match for TJ.

The school did work out fairly well for TJ, but there were issues along the way and we tried 2 more times to get him an IEP.  There was always another reason why he was “normal,” “testing fine,” etc.  We did end up getting a 504 plan last year, but an IEP was always the goal.

But with TJ being in middle school, the stakes have risen.  Middle school is a social quagmire that has to be carefully navigated by even the most social adept.  How would TJ survive?  It didn’t take long to figure out. 

On the 2^nd day of school, his best friend from elementary school told him they shouldn’t be friends anymore.  He did it just as TJ was coming over to eat lunch with him.  TJ was shaken.  He went off to eat lunch alone and ended up falling and hurting his ankle.  I wondered if the kid was snickering when that happened, but I didn’t want to torture myself too much with the possible scenarios.  He is still eating lunch alone.

Luckily, I put in the request for an IEP a few weeks before school started.  The timeline mandated by law would ensure his testing would happen as soon as possible after school started.  And today, I got a phone call from the school psychologist.  She is reviewing his files and putting together the assessment plan.  She wanted to know my concerns.  I have had these phone calls before and they usually seem neutral or unfeeling.

This one surprised me.  She was shocked he let out of speech when he was 4.  She said a lot of our concerns could be linked to a need for pragmatic speech therapy.  We had dreamed of someone else thinking he needed that!

Now, we are still in the early stages of the IEP process, but I feel a little cautiously optimistic.  Maybe they will finally see what TJ needs.  Maybe he will be given the tools necessary to lead a relatively normal life.  Maybe, just maybe…

Building Blocks

When someone is talking about “the building blocks” of something, they are usually referring to the framework or foundation.  This is an obvious reference to the blocks that children learn to build with.  It’s not just a metaphor for me now, though.  On Thursday, I saw how real building blocks can be the foundation for TL learning to connect.

TL has a set of wooden building blocks that we bought specifically for his ABA therapy.  They are kept in his ABA box and used only during his sessions as “reinforcement” for completing a task.  Well, Thursday he had back-to-back therapy sessions and the materials were left out for the next therapist.  She was running a tad late and I was trying to keep TL from destroying the binder of paperwork they keep in there. 

I offered him different things in the box to play with and he picked the building blocks.  I took them out and instinctually began to build stuff with him.  This was the first time—yes, the first time—TL and I had ever played with the building blocks together.  At first, he didn’t like anything I was making and would knock it down.  Then, I made a “fire truck” from the red blocks.  He loved it!  I started to really get into it and feel like I could play, actually play with my son. 

I was so disappointed when there was a knock on the door and the therapist started her session.  We connected and played so well.  I never wanted it to end.  It is those simple moments that make it all so worthwhile.  All the appointments, reports, schedule changes, and house invasions (AKA in-home therapy)—all worth it, because we connected.

My day was doubly blessed after dinner that night.  The boys pretended they were horses and raced from the dining room to the living room on their hands and knees.  They pretended they were airplanes and ran around the house with their arms out, making plane sounds.  They connected.  They might be 8 years apart and be on the Autistic Spectrum, but they connected.

Those are the building blocks for TL.  He is learning to connect.  He is learning to use his imagination.  He is learning to interact.  He is learning.  He is progressing.  There are definitely setbacks, like Friday’s therapy where he threw items around the room, but he is consistently moving in a forward direction.

What more could I ask for?

Walking By Faith: Part 2

Sometimes I can totally relate to Peter:  “Cool! I’m walking on water!  I’m walking on water!  Oh, no!  I’m walking on water!  I’m going to fall!”

I forget that God has done some amazing things in my life.  He gave me my boys, which I could never thank Him enough for.  He gave TJ the therapy that helped him and the strength he needs to get through all these years of appointments.  He gave us the wisdom to know what to do for our sons and the strength to get through each and every day.

I forget how God has led us on a spiritual journey this summer and guided us to find our new church home (thank you to all those that have been praying for us on this subject). 

I forget.

Lately, it has been too easy to forget.  I have gotten some news about my health that has crippled me with fear.  It is nothing dire and it is something I can change, but for awhile, I felt paralyzed.  I was sinking like Peter.

I have wanted to give up.  I told myself, “Amanda, you tried this before and nothing ever worked.”  It’s true, I tried.  But I need to give up control and let God take the reins.  I pray that He gives me the wisdom to make the choices that are best for my life and that He gives me the strength to keep moving forward.

How can I do anything else but put my faith in God?  I look around every day and see His hand in my life.  My sons can speak.  They couldn’t do that without Him.  TJ is going into middle school, in regular classes, with friends who don’t even realize he is autistic.  That is God.  TL is learning new things everyday and has a smile a mile wide.  That is God. 

Why would I think God would fail me now?  He won’t.  I know, because I am walking by faith.

Dared To Be Spontaneous

Being spontaneous with two boys on the spectrum is very hard.  They need to be front-loaded (told what’s coming before it happens).  They need schedules, calendars (I can’t count how many trees have been killed for the sake of custom calendars in my house), and routines. 

But we threw caution to the wind Sunday night.  It was a hot day and our house was not cooling down much—it was looking to be a sweaty summer night.  It had already been a difficult day, starting off with us leaving church early because TL couldn’t handle the special all-church service we went to (with no childcare—yikes!).  Everyone was cranky and everyone wanted to get out of the oven we called home.

So, at 9 that night, we booked a motel online in Watsonville, a coastal/farm town about an hour away.  We packed up the bare essentials and took off driving.  Our oldest, TJ, was bouncing-off-the-walls excited.  He always sees his favorite characters on TV go on trips and had grand ideas of what the next 24 hours would be like.

TL, though, was definitely thrown.  He didn’t know what was going on and had never spent a night away from home.  He usually loves the drive through the Santa Cruz Mountains, but the nighttime view can be a little spooky.  He told us he was scared (this was a BIG thing for him to recognize emotions) and my husband held his hand until he felt better.

We got to the motel…and we soon wished we had done a little more online research.  It was a mom-and-pop place that was a bit rundown.  We didn’t feel completely comfortable, but it was free of bugs and generally clean, so we stayed the night.

Then came the night of regret!  TL did not crash out until midnight (really wish he would have fallen asleep in the car) and TJ was tossing and turning until 3am.  I had insomnia (I am never good at sleeping in new places) and didn’t knock out until after TJ.  The whole time I wondered if we did the right thing.  I kept waking up my husband (he could sleep ANYWHERE) and venting.  He shared my concerns.

Following this “night of regret,” was the morning of possibilities!!!  TL woke up at 7:30 and was snuggled up next to his brother.  He crawled into our bed and slept for another hour or so.  We had a little of the complimentary “breakfast” the motel offered and then ate a complete meal at McDonald’s.

Then, we planned out what we were going to do and promptly threw it all out.  We wanted spontaneity and we were determined to get it.  We decided to go up Highway 1 and hit some of the coastal towns.  We saw a lot of Independence Day Parades in these small towns, but decided not to stop for them. 

Instead, we headed for Sea Cliff Beach.  We walked along the beach, checked out the cliffs, and waded in the water.  My husband held TL and let him touch the water.  He loved it so much that as we were leaving the beach, he kept asking for “more touch.”  Then, we got to check out their awesome gift shop that even has an observation pool filled with sea creatures.

Hungry, we began to search out lunch.  We stopped in different towns that we had always wondered about when we drove by, finally deciding on Scotts Valley.  We ate at a great little diner and enjoyed the cool breeze on the patio.

It was time to head back home.  The boys might have had a rough night, but their day was fantastic.  They loved every minute of the adventure and were completely exhausted when we got home—we all needed naps.

What did we learn?  Well, spontaneity REALLY is hard with two autistic kids…but not impossible.  It required a lot of patience and understanding, but I wouldn’t trade our overnight vacation for anything.  Camping, Disney Land, and time-shares may not be in our future right now, but they are not out of the picture forever.  We just have to dare to be spontaneous every now and then!

Article Makes it on Yahoo! News

My article made it into the news section of Yahoo!

http://news.yahoo.com/guide-finding-special-needs-ministry-san-jose-area-192400618.html

Mad at Autism

I really do try to be understanding to my boys.  I try to be understanding about autism.  I try to be understanding about their behaviors.  I do try.  But there are some things that just throw me.  They seem small at first, but when they sink in they rock me to the core.  Like today.

My youngest, TL broke his sandals tonight, so we needed to go out and buy him new ones.  It had to be tonight because he has therapy tomorrow and then goes to school.  We decided to walk as a family to a shoe store about a ½ mile away.  We put TL in his stroller and went on our way. 

After going through millions of pairs, we found the one for him.  We paid for them, put the box under the stroller, and started home.  About halfway home, my husband realized that TL had been dragging his foot on the street and sidewalk.  He had worn a hold in his sock and cut open his big toe. 

Why did this throw me?  I mean he just dragged his foot.  No big deal, right?  The big deal was that he didn’t feel it happening.  Something that would make you and I limp home was nothing to him.  How far would he have gone like that?  How big of scar? 

He probably didn’t notice because he always toe walks.  This wears down his toenails and toughens the skin on the tips of his toes.

I started crying on the way home.  I don’t even know why.  Maybe it was the fact that he didn’t realize he hurt himself.  Maybe it was the fact that he needed that “sensory input.”  Maybe I was just mad…mad at autism.

Gosh, how many years have I seen these things that autism does?  How many years of therapies, IEPs, books, articles, assessments, and explanations?  And still, I am mad at autism. 

I know I will feel better later.  I will try to look at the blessings my boys are.  But, darn it, right now I am so mad at autism

Walking By Faith

“But when he saw that the wind was boisterous, he was afraid; and beginning to sink he cried out, saying, “Lord, save me!” And immediately Jesus stretched out His hand and caught him, and said to him, “O you of little faith, why did you doubt?” (Matthew 14:30-31)

“You of little faith”…gosh, He could be talking to me!  So many times I have felt like Peter:  like when things look difficult or when choices seem impossible or when I am “rocking the boat.”  Sometimes, in those moments, I crumble from the fear and the worry.  I start to sink in those rocky waves.

But Paul reminds us, “…we walk by faith, not by sight” (2 Corinthians 5:7).  Walk by faith?  Yeah, walk by faith.  God is there for me and will always comfort me.  He has been where I have yet to go and knows every twist and turn by heart.  I simply have to walk by faith.  “Simply,” yeah right, anything but.

Yet, this is what my family has been doing this past month—walking by faith.  So many changes have come our way and there are dozens of unknowns that could cause a summer full of sleepless nights.  Yet, they don’t.  We have decided to walk by faith.

God will take us where we need to go or show us where we don’t.  There will be missteps and doubts along the way (we are human), but I hold strong to walking by faith.  As we embark upon middle school for TJ, prepare for TL’s transition to school district services, and leave the church we have called home for 6 years, we walk by faith.

We just ask one favor, though:  keep us in your prayers.

Like a Butterfly

Have you ever caught a butterfly in your hands?  You slightly open your hands just a crack to let the sunlight in and you admire the beautiful colors of this amazing flying insect.  It is so hard to open your hands all the way and let it fly, but that butterfly is starting to tickle.  You know it wants to fly.  You let it go and watch it fly into the sky through beams of sunlight.

I have two beautiful butterflies of my own that had to take a little flight of their own last week.  Trust me, I am no where near letting them journey into the sunset, but they did need to “spread their wings” a little this week.

My youngest, TL, started a center-based program for autistic children on top of his home-based program.  He stays at the center for 2 hours on Mondays, Wednesdays, and Fridays.  It is very—almost eerily—similar to the program my oldest was in 8 years ago.  There is even a two-way mirror, so parents can observe their children.

But, I don’t stay and watch.  I did that with my oldest.  I sat in a small, airless room with other moms and watched as TJ played, fought, progressed, and regressed.  I wouldn’t trade any of that time, but I know now that the biggest indicator of his progress is how he does outside of the classroom. 

Sure, he can sit in his chair at circle time, but can he sit at home to get his shoes on?  Sure, he can play nicely with a kid in his class, but how will he do with the new boy at the playground?  Those milestones happen outside of the school, when he makes the connections between school and “real life.”

I have changed things with TL, not because I felt we did anything wrong, but because he is a different child and his “flight pattern” is different, as well. 

Now, TJ’s flight this week was quite exciting.  He got the opportunity to present at a student-to-student conference for gifted children.  The conference was at a major college campus, which added to the excitement –and the pressure.

TJ did his presentation on Garfield—the cat, not the president (I don’t know why I feel the need to clarify that!).  He had done a presentation last year on a different topic, but this year I felt like I didn’t hover as much.  I let him take the lead.  I had to have confidence he could handle the audience.  I had to let him fail if need be.  I had to let him fly.

And fly he did!  He did great with his presentation and had a fantastic time.  My two butterflies spread their wings this week and fluttered around in the sky.  They have earned their flights and have proven they are ready for more time out of my hands.  The question is, am I?