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.
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…
Lukas loves water. L O V E S it. So we knew that when Aunt Amy bought him a fish tank a few weeks ago we would have to be extra vigilant. Sneaking toys into the tank at school had already gotten Lukas into toddler trouble so the seed had been planted. And then there is this other problem: my son just happens to be incredibly cute and charming. Already he is using his good looks and dazzling smile to get himself out of tight spots (@ home and at school, no one is immune to his wiles). So the idea of discipline is down right laughable to him. He does listen to ‘no’ very well in the moment, but sees no reason why ‘no’ ten seconds ago is still applicable.
Now I don’t think this is an autism problem, I am pretty sure this is just a toddler problem. Here is the sticky part – Lukas perseverates BIG TIME. Its not necessarily water that is the focus, though it does meet sensory needs for him, it’s the fact that once he gets an idea into his head it is very hard to get him to change gears without seeing that idea through. We first noticed this when Lukas was about 1 1/2 and Daddy forgot to put the toilet seat down one day. I came home from work to find my sweatpants and a various assortment of small toys in the toilet. Daddy also didn’t flush. What he did do was fish and then toss because quite frankly no amount of detergent or bleach was enough to keep me from being completely grossed out by the idea of pee soaked pants. I sure as hell wasn’t about to let Lukas play with those toys again.
Fast forward a couple days. We are all in the living room when Lukas walks to his room down the hall (past the bathroom) and abruptly turns and runs back to the side table and grabs his sippie cup of milk. Daddy has once again left the seat up, which I deduce from his “oh shit” and hopping up off the couch like there’s a topless parade marching past the bathroom window. Lukas sees the threat and breaks into a sprint. Daddy’s legs are only about twice the size of Lukas’s whole body so he quickly heads him off right before he gets to the bathroom door. Lukas fakes left and with a hope and a prayer, takes the shot. SWOOSH, sinks a 3 into the toilet from about 5 feet out. Add that sippie to the list of things lost to the loo. At least Aaron flushed this time. With a smug glance at Daddy, Lukas nonchalantly walks back to the couch, climbs up and snuggles up under my arm. I laughed. From that moment, all was lost.
So back to the fish tank… A day goes by, then two, then a week. No foreign objects in the tank! Three out of five tetras die, mostly without incident. Well…There was that small issue with the first one. Returning from preschool to see him floating on the surface, I grab the net and decide to just scoop him up quickly and flush him before Lukas notices. Of course I don’t make it to the bathroom without Lukas wandering in, but I decide to chuck the fish into the toilet anyway thinking he won’t know what I’m doing. Boy am I wrong. I spend the rest of the night guarding the toilet while Lukas cries and tries to get the fish out of the toilet. I mean the rest of the night – four hours. This is what I mean about perseverating.
Fast forward to this week. Tuesday the whole family had a snow day. Woot! My husband and I work opposite shifts to accommodate the little guys schedule, and our budget, so time together is a pretty big deal. We had the crazy idea that maybe we could watch an adult movie. Well, not an ADULT movie, just a movie that is rated higher than G. So, we get Lukas Wreck it Ralph, and rent Skyfall for ourselves. We can see into the living room from our bedroom so we don’t feel completely guilty. About twenty minutes into the movie, we are marveling at how well Lukas is entertaining himself. Not really watching the movie, but instead periodically running back and forth from the living room to his bedroom. We think he is probably up to something, but quite frankly, he is clearly not hurt in any way so our laziness outweighs our suspicion. Several minutes go by and the tottering feet have ceased so I do get up and check on him because quiet is scary. He is asleep on the couch. So angelic.
The movie ends, we wake him up and go to change his diaper. (Yes at 3 years old he is still in diapers… another autism bonus). Now we find out what he was up to, and man it’s a doozy. I picture him looking longingly at that tank for the last month, mentally cataloging all of the wonderful things that just BELONG there and quietly biding his time. He finally had his chance and he took full advantage of it. The final tally? 48 toys, 4 Cheerios, half a Pringle, two mini Ritz crackers and one fruit snack. No doubt you have realized too, that the various assortment of food items can only be the result of a secret stash. Hmm. I think I’ll go clean the couch.