Hi, It’s So Nice to Finally Meet You. My Name is Mom.

 

 

 

My son and I met three years, three months and 20 days ago.  But I just started to get to know him.

 

 You see, when a child gets an autism diagnosis, there is a lot of jargon about living in the world of autism, and treatment being focused on teaching your child to let you into “his world”.  You learn to see your child through this veil of autism.  I would look at him and wonder what was going on in there.  Like he was in a cage called autism, and the door was locked from the inside.  

 

 I felt like my child was alone even when I was right there next to him… even when I was holding him in my arms.  He was somewhere I couldn’t go with him, and that was not ok with me.  

 

 Aaron and I started right away trying to find ways to get him to “let us in” for a little while.  Aaron was especially good at this.  They would play and play and play.  Without even realizing it, he was doing the best kind of therapy there is.  Tag, chase, hide and seek – all things that forced Lukas to interact, and all things that he loved to do.  Aaron turned into the chaser, and I became the safe zone.  Lukas would take my hand and we would run away together, or he would run to me and jump into my lap, laughing like a hyena.  I thought this was great until I realized that Lukas was not playing WITH me, he was using me.  I was a tool or an object.  Safe.  He was interacting with Aaron, but I was only partially in his world.  That just wasn’t good enough.  

 

 We were doing all the things that all of the “experts” recommended and we were seeing some progress, but something wasn’t right.  I always had this feeling that I was raising a stranger in my own house.  I was done waiting for Lukas to let me into his world, it was time to start bringing him into mine.  

 

 I can’t tell you how this happened, what techniques I used, what changed.  It was all subtle.  It wasn’t methodology, it was attitude.  I stopped treating Lukas like he was a patient and started treating him like a little boy.  We did a lot of the same things, but I simply refused to interact with the autism.  I would literally say out loud, “let go of my son, he is mine and you cannot have him anymore.” 

 

  I pushed his providers at preschool to challenge him, to not accept certain behaviors.  I am an educator and I work in special education, so I KNOW that kids with special needs are held to different standards.  Why?  It is one thing to respect a child’s abilities, but regardless of what level those fall on, every single child should always be expected to do THEIR best.  Too often we water down expectations before we even give children the chance to succeed.  

 

 I started kind of being a hard ass at home.  Lukas would take my hand and lead me to something when he wanted it, but I wasn’t allowing myself to just be a tool anymore.  I pushed for that recognition as a person.  So instead of just being led to what he wanted and complying without question, I simply started doing more interacting myself.  “Oh, do you want something Lukas?  What do you want?  Do you want a drink, are you hungry?”  I kind of played dumb.  It seems so crazily simple, but when your child isn’t interacting with you, it is so easy to stop those interactions yourself and just kind of go with the flow.  You know what your child needs, so you just get it, you just do it.  You meet the needs without question because that’s what parents do.  It was so hard at first because I felt like I was being mean to him, but I started telling myself, it is autism I am fighting here, not Lukas.  

 

 Now there is a fine line here.  Jenny McCarthy wrote about sitting outside a door for forty five minutes, through tears, screams and tantrums, until her son attempted to say “open”.  Lukas is way behind in speech so it is important to me too, but speech is just the icing on the cake of communication and I don’t want to stifle pragmatics by forcing words.  I do encourage language and Lukas’s communication has soared in recent months, but I think it is more because we have started being over zealous with our side of the interactions instead of being objects acted upon.  

 

 So… This, and a tremendous amount of hard work by my heroic son, has opened the cage.  I know who Lukas is.  I see him every day when he runs around the house, dragon toys in each hand, roaring and flying and falling with dramatic “whooaaaa, oh no, help me” crashes to the floor as one dragon defeats the other.  I see him when it’s bed time and he runs into my room and jumps into my bed and lays down in my spot and giggles uncontrollably while I pretend I don’t see him and lay down to “squish” him.  I see him when I tell him ‘no’ and he looks back at me with an evil grin to make sure I am watching while he does it anyway.  I see him when he “gets” his Daddy with a “sneak, sneak, boo!”  I see him.  More and more each and every day, I see him.  

 

 There is no more stranger in my house. He has done so well, so quickly, that his case manager said in our meeting last week that she would not be surprised if Lukas outgrows his diagnosis.  Whether or not that comes to pass only time will tell.  But that doesn’t matter to me.  What matters is that my little boy runs up to me when I pick him up from school, throws himself into my arms and says “Lu yoo mom,” while I steal a kiss.  What mother could ever wish for more….

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Sorry, God… But Church is hell.

I go to church every Sunday…
Well, ok, I’m lying. But that wasn’t always the case. Up until about four years ago I could’ve said that straight to St. Peter’s face. It wasn’t until I was pregnant with Lukas and started to ‘show’ that I stopped going. Why? I have a history of pregnancies not ending the way they’re supposed to and I became a little crazy about it. I pretty much avoided all situations where any well meaning individual might bring up my belly, babies, pregnancy, children in general… You get the point. I was pretty wacked for a while.

When my miracle baby finally came along I was beyond pure joy. I thought I would never be granted that gift, so every single day I am thrilled, humbled and utterly grateful. I am also extremely overprotective. Enter phase two of church skipping. There was no way I was about to hand my precious baby, my heart, over to the nursery volunteer of the week.

When he turned one I got a little (very little) better, so we thought we’d give ole’ church another go. Let me cut straight to the point and just give you a little play by play of that morning…

10:55 We drop Lukas off at nursery school, ask if we can stay with him for a few minutes to help adjust.  But he runs off into the playroom without a care so we leave.  “Wow, we could have done this months ago, he is going so well!”

11:00 singing, tithes, announcements

11:20 The flash: 402B, 402B, 402B

11:21 Hubby and I sprint into the nursery to find baby boy bawling his eyes out.  He reaches for me, I try not to cry as I rock him and soothe him.

11:25. I tell hubby, ” you go back out there, I got this.”

11:30 I try to reintegrate Lukas into the playroom and sneak back into the service.  He starts screaming and runs to me.  I give up any hope of actually hearing the sermon.

11:30-12:30 awkward play in the nursery while the two helpers of the week talk amongst themselves and give me weird looks that say without saying, “your kid is weird. Your kid does not act like the other kids.  Why doesn’t your kid want to play with them?”

We tried this a few more times over the next year, with the same result.   And so ended our church going attempts.  Fast forward to the present.  Lukas has been in preschool for almost a year now. He is doing awesome and I think he would be able to go to the nursery now without any issues.  Too bad he has aged out of the nursery.  At three, he is expected to go to the Sunday School classroom with the other 3-5 year olds and have a playful, age appropriate lesson.  Not gonna happen.  Lukas still thinks he is the sun, the moon and all the planets.  The rest of us are just stars from far distant galaxies that get to look on in wonder at his awesomeness.  He travels on his own orbit, and no one is going to tell him otherwise, for now. He is definitely making progress, but still has difficulty in following along with (ahem) “Non-preferred activities.”

I miss church – a lot.  Despite my propensity (and love) for a few tasty cuss words here and there, I still try to follow the ideals and principals that I strongly believe in.  But this problem does not confine itself to the House of God.

There are other things I miss out on: dining out without my son running off to whatever bright thing that catches his eye, going grocery shopping with a non- military mission mentality, summer softball without my son running out onto the field after me as soon as I leave the dugout, visiting friends or attending gatherings without Lukas melting down from overstimulation and unfamiliarity.

Please, keep the invites coming!  Just accept my apologies in advance if I have to leave early, or flat out decline.  And most of all, try to understand that it’s not about you, it’s not about me – its about Lukas and doing what I can to make sure he learns how to deal with being in a situation that for us is fun and enjoyable, but for him is hostile and overwhelming.  I will not do that by thrusting him into that situation and watching him squirm.  There is no sink or swim mentality with autism.  

And when it comes down to this little, incredible, beautiful and perfect being for whom I would cross oceans, climb mountains and even squish spiders, missing out on a few activities every now and again is not even a sacrifice, it’s just my new and blessedly wonderful life. I’m pretty sure Jesus is cool with this, and I hope you can be too.

My Son Eats Like @$#%

We all know that children with autism often are ‘selective’ eaters.  This wasn’t always a problem for Lukas.  In fact, after we started him on solid foods he ate pretty much everything we set in front of him (except prunes – blecchhhhh).  When we began his evaluations at age two the ‘picky eater’ category was not one we checked off on the list of possible red flags for autism.  I think we jinxed ourselves.

It wasn’t long after this that he started downright refusing foods he used to love.  Of course it’s mostly the healthy stuff that’s been nixed: bananas, yogurt, Nutrigrain bars, any type of vegetable that is not in juice form… Etc etc.

Now, before I was actually a mommy, I had a lot of opinions on foods my son would eat when hell froze over.  Happy Meals, candy, sweets, chips – pretty much all the good stuff.  What a freakin’ judgmental idiot.  Now, I know there are parents out there who are superheroes and their kids only eat organic woo hoo wonder foods.  Good for you, that is really awesome and I wish you knew your secrets and had the time you have.  Please share your tips below but don’t bother to keep reading  – this rant is not for you.  For the rest of us, let me just be honest here… My son eats like sh*t.

I hate this fact.  I have tried and tried to get him to eat more diversely, but for every  step forward we take two steps back.  Lukas’s basic daily diet looks like this:

Breakfast: granola bar, milk, v8

snack: pb sandwich crackers of which he eats the peanut butter and gives the cracker to the dog

Lunch: cereal or another granola bar, v8

snack: Cheez-its, milk

Dinner: chicken nuggets, and maybe a few bites of Mac and cheese. Water, milk

Notice there is not a single fruit or vegetable in this list.  V8 is the only source of his fruit and veggie intake.  And he has candy probably twice a week.  Mostly because the grocery store is a crappy place to have to take an autistic child with sensory issues and m&m’s keeps him quiet long enough for me to grab some things and run.  And I admit, he gets a Happy Meal once a week.  For shame…

I am certainly not trying to make light of the issue.  I worry about him getting the nutrients he needs.  But I really think I am more the norm here than the exception…

I obviously do not have my son on the GFCF diet.  And you now what, that does not make me a bad mom.  Lukas has no bowel or intestinal issues and his autism is pretty darn mild.  He doesn’t have any symptoms or behaviors similar to those you hear about for children who have success on this diet.  GFCF would be healthier for everyone, but after careful consideration and discussion with his Developmental Pediatrician and my gem of a co-worker who happens to be a nationally renowned autism specialist, we chose not to go that route.

Notice I didn’t include Lukas’s pediatrician in the above list.  I did raise my concern about Lukas’s eating and his ridiculous clueless response was “feed him the same food you eat.” YOU @$*#% MORON! Have you ever even heard of autism?  Do you know ANYTHING about it?

So, no help there.  And if you are reading this, Dr. M, please feel free to invite my son to dinner and show me how it’s done.

My son is a warrior.  He fights tooth and nail every day to do what most children don’t even have to think about, and he does it with a huge smile on his face, and pure joy in his heart. I want him to eat better, and hopefully we can get there with time and patience, but I will not make the table another battlefield.  I would love to hear some real tips from people have had gone through this and had success.  Until then, I’ve got to head to the grocery store, we’re out of chicken nuggets…