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?

The Celebrated First Debate

They always say you are not truly married until you have your first argument, but what about that first argument with your child?  Most people think of when their child yelled “no” in the middle of the store and collapsed into a tantrum.  I am talking about that first debate, where they let you know they want something different.  I had that the other day with my youngest, TL.

This morning, when I was still groggy, he came up and said “Sweetie,” trying to wake me up.  Now, this is what my husband affectionately calls me, so I knew where he was getting it.  A little while later, he was in his highchair eating breakfast and I decided to make sure he knew to call me “Mama.”  So, I said, “I’m Mama, not Sweetie, okay?”  He replied, “No!  Sweetie!”  I countered with, “No.  Mama!”  We went on for many rounds—and cracked up the whole time.  Meanwhile, my husband and I kept giving each other looks of amazement; we couldn’t believe he was doing this.  There was no echoing, no rehearsed sayings—this was all spontaneous and appropriate!

I know the laughing will probably come to bite me in the behind in a couple years, when the cute debating turns to annoying whining, but it is worth it.  I celebrate the small things, because for my boys there is nothing small.  They work for everything they do and deserve to be praised for it.  But most of all, I praise God for giving me the opportunity to raise these terrific little men.

When a Chair is More Than Just a Chair

The other morning, I had the pleasure of watching my sons make up a game with 2 kitchen chairs.  Sounds pretty mundane, but for me it was thrilling.  With the eight-year age gap, there is still a difference in how much TL understands about the games, but he was definitely a willing participant.

They charged at each other like chair bumper cars, in a game that TJ called “Trojan War.”  They laid the chairs down and made a fort.  They turned those chairs into so many things and had the best time. This session of make believe is so common in most houses, but not mine.  It made my morning seem brighter and more hopeful.

There have been quite a few times this week where I could actually forget my sons were autistic.  When TL was having a therapy session recently, it seemed like he was just a little boy playing with a teacher.  I didn’t see the struggles and behaviors that usually make it painful to watch. 

These little glimpses of normalcy are probably what keep me sane.  I can’t survive in autism mode 24/7.  Not only do I need to see my kids being normal, but they need to feel that way sometimes too.  There is nothing wrong with being different, but there is something difficult about feeling different all the time. 

All I know is that I will take these moments as they come and cherish my sons as the blessings from God that they are.

Blessings

So, I have decided to move past the anger talked about in some of my recent blogs.  Don’t get me wrong, I still maintain my positions, but I refuse to let these issues take my focus away from God and my children.  Reading through 1 Corinthians, I am reminded that there have always been misguided people, there have always been divisions, and there have always been judgments.  What I am responsible for is how I behave and react.

I have decided that my last posting for April will be on all the blessings that our family has received this month.  It really has been a blessings-filled month!

·         We found a local church that offers free respite days for parents of special needs children.  My husband and I were able to enjoy a romantic night out and the boys had a lot of fun.

·         TJ went to science camp—and survived (so did we)!  More than that, he came back with a lot of great stories and new experiences.

·         TL was approved to start having some services at an autistic center on top of his in-home ABA.  This means he will get more chance to interact with other children and gain social skills.

·         TL can now identify all numbers 1-9 and letters A-D.

·         TL said his first two-word combination (that was not an echo) last week, “bye-bye, Daddy.”  Since then, he has put more words with “bye-bye” and has begun to combine words with the phrase “all done.”

·         On Saturday, TL said his brother’s name.  Usually, he has called him “brother,” which is cute, but TJ really wanted him to say his name.  He got that wish and TJ was over the moon!

·         On Sunday, we enjoyed a wonderful Easter morning and TJ adjusted well to us helping a different service at church—although he said it was little too wild for him.

·         After church, we took a spontaneous trip to Monterey and the boys had a great time at Dennis the Menace Park.

·         And just today, TL got up and after having a diaper change by Daddy, he came and gave me the biggest and longest hug he has ever given me.  The whole time he said “Mommy, Mommy.”  He finished off by giving me a kiss and another short hug.

God has blessed us this month and every month.  Focusing on these blessings is how I choose to react .

Autism: We Need Acceptance and Training—Not A Cure

As I write this, I am fuming mad.  I am so filled with anger and frustration and want to find a productive way to channel it—so, I writing in my trusty blog.  Why am I angry?  I am angry at the parents of autistic children that insist on using biomedical treatments that claim to cure autism.  I am tired of hearing how autism is caused by vaccines, gluten intolerances, gut problems, mercury poisoning, blah, blah, blah…

I am tired of being mocked for believing that my children were born this way—and it is just how God designed them.  I am tired of there being a lack of support in the Christian community for evidence-based therapies in autism.  (This is not a slight at any of my friends, as you guys are not the problem.)

I did a search yesterday—looking for online communities, blogs, and books by Christian parents—and was appalled that they all supported biomedical interventions.  They all supported the crazy claims and the unproven causes.  They all claimed to “cure” or dramatically improve their children using alternative medicine.

Now, I am not going to throw everyone under the bus that uses alternative medicine, but I don’t believe all of it honors God--especially when it claims to cure a developmental disability.  So much of it is tied into the New Age movement and mysticism (and yes, I do have personal experience with this and am not just passing judgment).   

A great quote I read somewhere was, “You know what happens to alternative medicine that is proven true?  It becomes medicine.”  There are so many conspiracy stories about the government covering up the supposed vaccine link.  This doesn’t even make sense.  Medicine is a business and if modern medicine truly believed that alternative therapies worked they would be pushing them and profiting off them instead.  But the research is just not there!

Sigh.  I am just tired.

I love my sons just the way they are.  TJ has such a different way of looking at the world.  I can’t imagine taking that away with a “cure.”  There is all this talk of gastrointestinal problems in autistics and how they need special diets to relieve the pain they are in.  This is part of a movement that claims there is this connection between psychology and your gut. 

I always wonder if these parents talk to their kids (the ones that have verbal children).  I have asked TJ if he has any pain. No.  Do certain foods bother him? No.  And what does he think of people that put kids on these diets?  Well, he is blunt and he thinks they are stupid (his words).  He asks me why the parents can’t just accept the kids.

Aha! Acceptance!  Why can’t we accept them?  Sure, give them the tools they need, like speech and social skills, but accept them.  Don’t worry about placing blame.  Don’t worry about why they are autistic.  Just accept them.  Isn’t that what we all want? To be accepted?  How are my sons any different?

I’m still angry and I am praying God shows me how to let the anger go.  I want to be at peace and shrug off the crackpots and misguided.  I want to focus on my children and raising them to be good disciples in Christ.  But I also want them to be free to be themselves.

By the way, if anyone knows of a Christian organization or author for autism that does NOT support biomedical interventions, please pass it along to me. 

PDD-NOS: The Catch-all and The Catch-22

My oldest son, TJ, is diagnosed with PDD-NOS.  This is basically a catch-all diagnosis that means he has many of the autistic traits, but not enough to diagnosis him with autism—although, PDD-NOS is on the autistic spectrum, so he is autistic.  Confused?  Yeah, so am I.

Children with PDD-NOS are often mainstreamed in regular classes, like my son, and they tend to blend in pretty well with the general population.  If you didn’t know my son was autistic, you probably wouldn’t pick up on it.  He doesn’t openly spin around anymore, he gives fair eye contact, doesn’t line up objects anymore, doesn’t repeat random phrases much…pretty normal kid on the outside.

What people can’t see if the Catch-22 of PDD-NOS.  TJ has a hard time with the little things in life, like using a knife or controlling the temperature in a shower.  We recently ran into a problem with him and the changing of toilet paper rolls.  He threw one away when there was still plenty of tissue left.  I can’t tell him to use a roll until every piece is gone or he will take this literally and use every scrap.  I can’t say to use it until most of it is gone, because he will figure that when it is down to 1/4 roll, that most of it is gone.  Instead, I need to wait until a roll is empty and show him what it should look like.

TJ is going to middle school next fall, so we have to look at how to prepare him for that.  We will be having him pick out a combination lock for his school locker soon.  He will practice his combination everyday and to simulate the stress of opening your locker between periods, we will have him open the lock during hurried moments at home (say right before we rush off to church). 

He still struggles with anything more that a two-step command and needs most things broken down for him.  He still “forgets” something we have trained him on a million times.  Every time we go shopping, we have to tell him not to touch all the shelves as he walks by (he likes the feel of it) or not to lean on the cart right in his brother’s face (this bugs TL and he will take a swipe at TJ).  I have yet to figure out why going shopping gives TJ temporary amnesia, but I think it might be a sensory overload.

He also does not understand the importance of being polite or discrete when we interact with each other.  He will repeatedly make a comment like, “Why do they put signs in Mexican, when we are in America?” right when we are standing in a Mexican restaurant (and of course surrounded by Hispanics, who are now glaring at us).  Ethnic differences have been a real challenge for him, which is baffling, considering my husband is one half Portuguese and a quarter Korean.  But, we work on this—one situation at a time.

All children need to be trained in some of the “little things,” but most of them can learn the lessons quick and move on.  With TJ, it is a daily battle of learning the way the rest of the world works.  When you see TJ and how normal he seems, just think about the hours of training he has gone through.  Every thing that we do without thinking, TJ has had to spend hours learning.  

The “Eyes” Have It

There is this intense connection by the general population of autism and eye contact.  Yes, poor eye contact is a major “symptom” of autism, but it doesn’t define children on the spectrum.  This subject has become more relevant as Robert MacNeil (or MacNeil-Leher fame) made strong statements about the importance of eye contact on his AutismNOW series.  These statements have prompted a backlash in the autistic community—specifically by those with autism themselves (great open letter to MacNeil here).

Both my sons have difficulty with eye contact, but TJ has had to deal with it the longest.  While this can be a communication barrier, it also helps the child cope.  Sometimes it is just too much stimulation to visually connect with someone.  But not everyone gets that.  There are two incidents that stick out for me—and they both happened in the last year!

The first had to do with a yard duty at my son’s school.  She helps with crowd control in car line and my son was not doing everything to her liking.  She decided to confront him while he was getting into my car by holding the car door open and demanding his eye contact.  I told her to leave him alone and she still demanded he look at her.  Eventually, she backed down, but there are so many things that were wrong with this scenario.  It resulted in complaints at both the school and district level, as well as a consultation with a special needs lawyer.

I attribute this episode to the poor training of educational professionals on interacting with children—especially those with autism.

Then there was the one incident involving a mom I knew that had recently had her daughter diagnosed with autism.  She is in what I call the “whacky camp” and believes that evil gluten caused her daughter’s condition and the true answers are in the holistic community.  Whatever.  Well, one day she came up to my boys when I was about 15 feet away taking care of something.  She started commenting on how beautiful their eyes were.  Seemed harmless, but I continued to listen to her interaction. 

She started zeroing in on TJ (TL wasn’t diagnosed yet) and asking him over and over again to show her his eyes.  I could tell that it stopped being about the color of his eye and more about her testing his eye contact skills.  He was getting a little uncomfortable, but is pretty much a pro now and dealing with these social situations.  She gave up after a few exchanges, and while I could have jumped in to save him, it would have turned a forgettable situation into something TJ would dwell on. 

But, why was she doing this?  I don’t have a clue.  Maybe she felt the need to “check” his autism (like years of therapists and doctors were wrong).  Maybe she was comparing his eye contact with her daughter’s.  Whatever her reasons, it was just inappropriate. Needless to say, that connection ended in a big blowout over our different stances on autism among other things.

Now, I did talk to TJ after his interaction with this mom.  I just approached it “dumbly” (what was so-and-so talking to you about?).  He told me she wanted to see his eyes.  I then decided to open a discussion about eye contact and asked him how it felt when people wanted to “see his eyes.”  He said the most profound thing I have ever heard about eye contact and will close with his quote:

“Eye contact is like homework; I don’t want to do it, but I know I have to.”

Too Much of a Good Thing

Too much of a good thing—that seems to be the theme in my house this past week. 

TJ had a great time at science camp and came back with everything he was supposed to (due, in part, to a warning that he would pay 50% of any replacement costs).  But even he would admit it was probably a little too much of a good thing. He came off the bus with a hoarse voice because he overdid the screaming at the closing assembly.  He was also extremely tired (apparently it is fun to be with friends for 4 days, but you soon discover they snore when they sleep).

TJ’s homecoming was great for everyone, as we were truly grateful to God that he came back safe and sound.  But he has had this whole week off for Spring Break and that can definitely be a little too much of a good thing.  Being cooped up at home so much for TL’s therapy has made things even worse.  I would love a day at the park, so the boys can get rid of some of their excess energy.  Maybe tomorrow? Sigh, we’ll see.

Then there is TL.  His favorite therapist has left the organization and the replacement therapist has had to deal with a family emergency this week.  So, TL has had the same therapist all this week (and this is one that he doesn’t completely “click’ with).  After the second day, it was apparent that this was too much of a good thing.

When I mulled this topic over, I realized that “too much of a good thing” is so applicable to autistics.  The repetitive and obsessive behaviors that autism is “known for” are really instances of too much of a good thing.  It is considered normal to like trains, but some autistics take it to the extreme and memorize every type of train or pamphlets full of train schedules. 

My life is full of these “good things” taken to the nth degree—TJ with Transformers, TJ with Bionicles, TJ with Garfield, TL with circles, TL with Disney Channel, TL’s echolalia—oh and TL’s echolalia!  (Can you tell I am a little tired of hearing the same phrase repeated 50 times?).   I guess I should be a little more used to dealing with “too much,” but, alas, I still feel like a novice.

Maybe next week will be more balanced—meaning just the right amount of too much!

Turning Off the Crystal Ball

Every parent worries about their children, that is not specific to special needs parents.  What is different is the type of worries.  My older son, TJ is scared of all flying insects—and I mean really scared.  He has run into busy streets to get away from a moth or a butterfly.  So, when he decided he wanted to go on his 5th grade science camp trip, well, worried didn’t even cover what I was feeling,  I envisioned him running off the mountain trail because a mosquito or wasp flew by.

On top of this, he had never even been camping (none of us like the outdoors enough) and he had never been away from home over night.  And, trust me, we did everything we could to talk him out of this, but he was determined that he wanted to do this.  So, we did what we knew we had to do—we completely supported his decision.  Ugh!

We had to turn off the crystal ball and stop looking at the worst possible outcomes.  Over the past few months, we taught him how to control the temperature of his own showers, since he would have to do this at camp.  We arranged for a tour of the camp about a month ago, so that he was “front loaded” (knew what to expect).  We had him help in every stage of the packing—from labeling to sitting on the bag and zipping it up.  By Tuesday, he was as ready as he was going to be.

But even though we turned off the crystal ball, we still adapted things to his abilities.  The camp suggested that students pack a list of the things they brought in their luggage.  This sounds like a good idea and we were all for it—until I thought about TJ.  He would probably get so worried about making sure everything was on the list, that he would empty his dirty laundry bag out and count every sock.  Ick!  But I didn’t want to put him in a box, so I asked him if he wanted a list in there or if it would be too overwhelming.  And guess what?  He said it would be too much for him!  He gets his limitations and only pushes himself when he knows he is ready.  We must have done something right!

So, now TJ is at science camp and definitely having a better time than we are.  The house feels weird without his zany energy.  His room is so quiet and there are no crazy Garfield jokes at dinner.  We try to focus on TL, giving him some “only child” time, but it is just not the same.  TL is also having a hard time adjusting and doesn’t understand why his brother doesn’t come out of his room when he calls for him.  TJ comes home on Friday, which is also our wedding anniversary.  It will be a joyous day filled with love and appreciation for our little family.  That is, until things return to normal and the boys butt heads again!

What I Thought I Knew

I really thought I had a handle on autism 3 years ago.  TJ was doing well in school and his social skills were progressing.  Everything seemed so manageable, that we decided, “Hey, let’s throw another kid into the mix!”  And we did.  We had TL.

Don’t get me wrong, I love TL and never regret the decision to have him.  But, I would be lying if I didn’t admit that things got so much more complicated from the moment he was born.  TJ reacted so badly to TL’s newborn cries.  It was such a sensory overload for him.  Then TJ had to learn how to play with a younger sibling.  Months of frustration ensued!  Finally, as things started to settle down for TJ, TL exhibited concerning behaviors.  We didn’t quite put the pieces together at that point, but looking back I can see the red flags. 

So how are things now?  Well, I am struggling with the day-to-day of TL’s ABA therapy and the long road that goes with it.  And then there is that fact that TJ has had trouble at school twice in the last month or so, which is completely out of the ordinary.  Because most of his trouble is due to communication and social issues, the fallout involves hours of talks with the teacher, my husband, and TJ.

Really, I don’t have a handle on this.  I don’t think I ever did or that I ever will.  How can you?  Autism is really the gift that keeps on giving.  There are always new challenges, like TJ struggling to understand what “appropriate” language is.  Then I remind myself that there are also new joys.  Like when TL spontaneously had pretend play the other night!  Truly, a big milestone that warranted lots of praise.

But, honestly, I often find myself crumbled on the floor—back to where I started 8 years ago.  I thought I had gotten past that.  I thought I had been broken from autism and that God lifted me up.  Why am I here again?  Why do I have to watch this pain flow through my family again?  Why…just…why?

I don’t know why and probably will never know why.  What I thought I knew went out the window a while back.  So, I do the only thing that makes sense—I turn to God.  While I’m on that floor, I crawl to Him and I just hold on tight to Him.  I know that His plans for us are so much more than what I could ever imagine.   I just got to learn to leave the “knowing” to Him.

Those Painful Mirror Moments

It’s always hard to look into the mirror and be honest with yourself.  Yes, that is a wrinkle.  No, you don’t look the same as you did in high school.  But the hardest mirror to look at is when someone is behaving the way you do (or did).  Maybe you see another mother yelling at her kids the way you do or a wife nagging her husband sounds just like you.  It’s a little hard to swallow those “mirror” moments.  Well, my oldest son is having those moments a lot now. 

The fact that my sons are 8 years apart makes things very interesting.  TJ has learned to cope with a lot of his autistic traits, to a point that they are barely noticeable to an untrained eye.  When he needs stimulation (or sensing, as we call it) he will ask for a time to roll on the ground or spin.  These have become less and less frequent.  When he gets the urge to line things up, he organizes papers or books. 

My younger son, TL, is not so aware of his needs and will spin or line up when the feeling strikes, much like most toddler urges.  TJ watches TL and gets very concerned and worried.  He will ask me why he spins or why he doesn’t like to be touched on the shoulder.  He will ask why TL doesn’t like songs or will throw things when no one understands what he is communicating.  Those are tough questions for any child to ask and the answers are not always clear cut. 

The mirror moments come when TJ learns (or is reminded) that he did something similar.  First, I see a look of relief that his brother is not some alien born out of a pod.  Then, he gets a look of realization as he processes the fact that he too at one time would scream at certain songs.  TJ has to watch autism from the outside and I can tell he is struggling with it. 

But, just like I can’t take his autism away, I can’t take away what he sees his brother do.  TJ still has autism, but he also has a brother with autism that looks up to him.  They will have a bond that neither I nor their father could ever share with them.  I look at as part of his journey—a journey to accept himself (and his brother).

The Ohhh…

I always love when I get the “ohhh…”  It is the reaction that a lot people involuntarily give when they find out your child (or children) are autistic.  Sometimes it might be at a restaurant when my 2-year old is upset that the sugar packets don’t line up perfectly.  He throws a tantrum and a well-meaning (aren’t they always) stranger offers some advice on tantrums or tries to distract him.  I bite my tongue on what I want to say (some version of “Butt the heck out of this, sit back down, and leave us alone.)  Instead I blurt out, “He’s autistic.”  There comes the “ohhh…”  They then smile politely and walk away.

I have even gotten the “ohhh…” from the therapists that come to help TL (my youngest).  They would ask about TL and our family.  I would give some background and then drop on them that my older son is also autistic (“ohhh…”) and that my husband’s brother is also autistic (double “ohhh…”).

Of course, I have been open about my boys being autistic for a long time.  I’ll admit it was hard sharing the truth first few years with TJ (my oldest).  It took a little while to accept things and get settled with admitting it to ourselves.  After awhile, I realized that I had nothing to hide.  Hiding his diagnosis meant I was ashamed and I definitely was not.  When TJ started getting therapy at 22 months, he could not talk, was violent, could not smile, and could not stand other people.  Anyone who knows him now, knows he is nothing like that anymore.  He is a bright 5th grader who has given a lecturer on the history of LEGOS at a GATE conference at U.C. Santa Cruz.  He has friends.  He might be a little quirky, but he looks pretty “normal.”  He is nothing to be ashamed of.

Neither is TL.  He may throw tantrums in supermarkets (today) or restaurants (yesterday) or at home (most likely tomorrow), but he is progressing.  He is adding words to his vocabulary and learning the words for his body parts.  Ashamed?  No way.

To me, autism is a part of what makes them who they are.  Without it, they would be whole other people…strangers even.  I don’t brag that they are autistic, but I don’t hide it either.  I have found that so many misunderstanding can be cleared up by just admitting to someone that your child is autistic.  Teachers/coaches/childcare providers who thought your child was just misbehaving or not paying attention will have a better understanding of who your child is and what they need.

But baring your soul about your child being autistic is not for everyone.  You may not be ready yet.  You could still be in denial.  You might believe that telling everyone will make your child look different to people.  These are all valid positions.  But if you do choose to tell someone, just know that getting the “ohhh…” is not the end of the world.  At the very least, it gets the annoying, well-intentioned stranger out of your face!

The Same But Different

Everything about my sons is the same but different.  They both have blonde hair, but one has my texture and the other has my husband’s.  They both walked at very early ages (8 ½ months for my older son and 7 ½ months for my younger one), but my older son skipped crawling altogether. 

And, of course, they are both autistic but their traits are a little different.  They both enjoying lining things up and spinning; although, my younger son is more particular about how things line up and my older son enjoys spinning to the point of making me dizzy.  My younger son enjoys toe walking most of the day, while my older son never really got into it.

Then there are the differences in services and therapy.  We got services through Early Start for both our sons and they were evaluated in the same exact building.  But in eight years, the building and the process have changed.  The building is home to a special needs school, an office for a different state program, and the Early Start program. 

When we went into the building 8 years ago, the program used offices belonging to the school and we sat in a huge open waiting room.  This time, we noticed the big waiting room was gone and Early Start now had their own separate evaluation rooms and waiting room.

And let’s not forget the process changes.  When we got services 8 years ago, it was Early Start evaluation, IFSP meeting, and then services begin.  Now, before services can “officially” start, the state of California has all parents submit requests to their health insurance providers to see if they will foot the bill for any of the services.  For autism services, the answer is most often going to be no and then the state will go ahead and take care of the costs. 

As a Kaiser member, I found this process to be extremely frustrating and confusing.  People at the Kaiser regional office had no idea what I was talking about and the Early Start case worker was no help.  The most confusing part was that his services actually started in the meantime and I was told by someone at the state office for Early Start that if the health insurance agrees to pay anything they would be billed for these services.  All of this so the state can try to save a buck.

Funny thing is that parents of autistic children have been trying to get a bill passed in California to require healthcare providers to cover autism services, like ABA therapy. (see http://www.autismspeaks.org/government_affairs/state_issues.php).  Seems to me that passing legislation like this would decrease the costs associated with Early Start, without sending parent on a wild goose chase for a “denial letter.”

So the process is different from 8 years ago, but so are the services provided.  ABA therapy has long been associated with helping autistic children, but it was difficult to get the service unless you private-paid or your child was on the severe end of the spectrum.  My older son did not receive ABA therapy; rather, he was provided with a speech and language small group class 3 times a week, a private speech session once a week, a private session with an OT once a week, and a in-home visit from a behaviorist once a month.  Now, I’m not saying my son did not improve, because he really did, but he was not given the same opportunities as children nowadays.  My younger son is receiving 15 hours of in-home ABA therapy a week—and this is just an evaluation period.  They will decide if he will need more therapy, less therapy, time in a center-based program, additional services, and so on.  He is already showing signs of improvement and his word count is growing everyday.

Oh gosh, what am I really saying here?  I guess that there is no such thing as a “veteran” parent.  The moment you think you have everything figured out, they go and change it on you.  We may know how to raise autistic sons, but we are also learning something new everyday.

The Road

You ever get really difficult directions to a destination?  You probably have felt nervous that you would never get there, anxious that you made a wrong turn, frustrated that it is taking so long, and angry that it is so hard to find.  That is how I feel with my oldest son. He is 10-years old and is a high-functioning autistic. 

Now, how about the second time you take that difficult route?  You probably dread navigating that confusing path, frustrated that you have to go through it all again, and angry that there was not a simpler way.  But, you probably also feel hopeful because you know you will get there eventually.  That is how I feel with my other son.  He is 2-years old and was just diagnosed as a low-functioning autistic.

The road of autism is a long and frustrating one.  With my 10-year old, we are embarking on middle school next year.  We are desperately searching for the school where his social inadequacies will not be so obvious.  With our 2-year old, we are going through California’s Early Start program and getting him speech and other therapies.

I would be lying if I didn’t admit that this road trip gives me car sickness; sometimes I just want to jump out of the vehicle and keep on running.  Yet, I’ve come to appreciate the unexpected turns and surprising twists.  I don’t even know what my life would look like without autism.  It has shaped so much of who I am as an adult and a mother.  It has challenged me in ways I didn’t even know were possible.  It is a road I don’t regret traveling down.