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?