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!