Journal

What You Say, What I Hear

2013-06-03T14:30:00Z

I hesitate to name this post anything like "what not to say..." to an autism parent since I've come to realize and accept that people, most of the time, just don't know what to say or they're trying to be helpful. Other times, people can say flat out jerky things but those are mostly strangers and those types merely make me angry. The well-meaning stuff can sometimes sting a bit. What stings even more is when people don't say anything AT ALL, like I've ceased having a kid once the autism thing came about with Can-man. I seriously have friends that never even ask about my youngest son anymore. I'd rather someone say the "wrong" thing over NOTHING.

If you've ever said any of the following to me, please know I'm not mad or singling you out. If you said it so did a bunch of other people or I wouldn't be featuring it, so you're not alone.

- I could never do what you do. I also got this one a lot when R was deployed. Believe me when I tell you, it's not helpful. This makes me feel like my family is so much more "different" from the next. The last thing a special needs family needs more of is to be singled out. It also kind of says you wouldn't love your kids despite anything that may happen to them. And I know you don't mean that. I'm doing what any parent does raising their kids - doing their best.

- Any statement that autism was a gift from God or God gave me Can-man because He knew I could handle it. Listen, I don't find a neurological disorder in any way, shape or form to be God's gift. Has autism taught me patience? Yes. Has autism taught me not to take anything in life for granted? You betcha. Did God give Can-man autism so I could watch my son struggle every single day while your child sails through their milestones without months and months of therapy to get them up to speed? No. I don't believe that, and I don't believe in a God like that.

- He looks fine/normal/not autistic. Of course he looks fine, Can-man is freaking adorable, so are most children at this age. They may not ACT adorable but they sure are cute! Any statements such as these make me feel like I want something to be wrong, or I'm looking for it. Like I'm taking him to the doctor saying, "Please diagnose him with something, doc, because I want to be singled out and made to feel special!" No. I would love for Can-man to be "fine." Can-man is not "fine." Would I change anything about Can-man? Hell no. Autism is Can-man and Can-man is autism, there's no separating the two. It's like asking me what a lollipop made by unicorns tastes like, I have no flipping clue.

- If you hit him back once, he'll never hit again - or any derivative thereof. I don't know of any kid with autism that is shown something once and they pick right up on it. Any type of autism therapy WE do is repetition, over and over and over. And just when you think they're never going to get it, they finally do, sometimes months later. I'm not willing to hit my child that much to prove a nonsensical point. Not only that, Can-man's hitting is usually NOT for the same reason a neurotypical kid may hit. Can-man will hit me if he wants my attention (he can't say "mom", so... he hits.) He will also hit if he feels like another child is invading his space. He doesn't immediately wail on a kid but if he feels threatened in any way, out comes the "back off" hand. Look, he used to bite so a little slap is a step up. Can-man will also hit because he handflaps a lot and hey, you may just be in the way. Hitting him back in response to any of the above isn't going to do jack shit but confuse the hell out of him. My response to Can-man hitting is always the same: I hold his hands to his sides and say, "Hands down, no hits!" And if he's in a situation that causes him distress, I remove him from it.

- Anything during a meltdown other than, "Can I do anything to help?" Meltdowns are awful, they can be embarrassing, they sometimes come out of nowhere and all I'm doing in the midst of one is find either a) what set him off or b) what is going to soothe him. Can-man started up at the store the other day and we were heading toward Meltdown City fast. This time, I knew we must have passed something he wanted and he doesn't have the words to tell me, so I backed up and retraced our steps, until it became apparent he wanted a fruit wrap. I grabbed the fruit wrap and handed it to him and he was fine. I realize anyone watching this scene may think he's spoiled. I care not. A neurotypical child of 3 could ask his mother, "Mommy, I want that fruit wrap. Mommy, mom, mommmmm... I want that fruit wrap." You, then, as a parent have the choice in denying or giving the fruit wrap and explaining to your child why he can/can not have it. A non-verbal family does not have that luxury. It's a crapshoot on whether Can-man even knows what the hell I'm saying sometimes. Some days I really think he's "with" me and others, he couldn't be farther away.

Can-man, he also communicates through more unconventional means: hand waving, clapping, grunting, moans. If a fruit wrap is going to make Can-man happy then we're getting the freaking fruit wrap so we can finish the rest of our shopping trip in peace. By the way, I told him he had to wait for his fruit wrap. I want him to realize he can't have everything he wants the very moment that he wants it. He held the fruit wrap in his tight grasp through the rest of our shopping, and through check out (it was scanned while in his hand), and all the way to the car. Once safely ensconced in his car seat, he handed me the fruit wrap to open. He's been understanding "wait" more lately and it makes me proud (I have to share my small victories.)

- Anything about Jenny McCarthy or anything about vaccinations. She can go screw herself. That's all I have to say about her. As for vaccines, I do not believe they have shit to do with Can-man's autism. Another parent may feel a different way but if you don't have a child with autism, tread lightly. Very lightly.

You're wondering what TO say? Ask questions, I don't mind questions. Maybe not phrase it where I can respond, "He's fine." Because I'll probably take that route. A friend told me once not give a man a yes or no question because he'll pick one so he can stop talking. An autism parent doesn't necessarily want to stop talking but merely asking me, "How's Can-man?" isn't going to do much since I don't know how much I should really say. "How's he doing in school?" "How's therapy going?" I wouldn't even mind, "Is he saying any new words?" Because one day I'm going to be able to respond that he says more than "no", dammit. It will happennnnnnn!

If you've made it this far, I sincerely thank you. All anyone wants is for their kids to be understood. I want what it's like parenting him to be understood. I don't ever expect anyone to love my kids as much as I do, but a little compassion and understanding goes a long way. Ask questions, lend an ear, give a hug. It all makes a world of difference.

Autism, Party of One

2013-06-01T22:49:02Z

I let my blog lapse for a while. I didn't have much to say. Actually I had too much to say and I didn't know where to begin. I remember reading once when you're faced with, like, a messy house to start in one small area and work yourself out. So that's what I do when I see piles of shit everywhere. I put this pile away, then that pile, shove that pile under the bed, try to toss yet another pile in the recycling. You get the idea.

Let's deal with the biggest emotional pile we have here today: Autism. If you hadn't already heard, although I don't think anyone reads this blog that isn't friends with me via some form of social media, Can-man is on the road to being medically diagnosed for autism (I used that phrase "on the road" one time and someone actually thought I meant he was ON THE ROAD. Like you travel in some sort of caravan or motorhome to Autism City like Emerald City in the Wizard of Oz. It's a figure of speech, bozo.)

The only reason why Can-man hasn't been medically diagnosed is it takes fucking forever and I'm not even kidding. No, I'm not trying to rush a diagnosis but it would be nice to not wait 6 months in between appointments. I seriously can't even go there because it makes me stabby, rage-y, all sorts of shit I don't have the proper pharmaceuticals to deal with it all.

Anyway, the school district has already "qualified" him for autism services, they are always very quick to point out he "qualifies" because they do not "diagnose." Noted, now stop beating me over the head with it and I promise I won't sue you.

Can-man started an intensive autism preschool his 3rd birthday, with a week's warning. The month of April pretty much sucked ass and May following sucked, too. I'm waiting for things to settle, for us both to get used to this routine, for us both to understand what's expected from us. He, he has a reason, he's still trying to meld together those broken connections in his brain. I don't really have an excuse other than ... I'm a little devastated. I'm waiting for the day I won't be devastated anymore and I don't know if that day will ever come.

Sure, there is some relief because I always knew something was different about Can-man from pretty much a few weeks after he was born. Please don't talk to me about GMOs and vaccinations and bullshit bullshit bullshit. I know my son, and I also have been a mother before. Can-man was ALWAYS different.

I could never put my finger on it, really. I thought maybe I was being over-protective since I was an older mom this go-round but I never even trusted many people to watch Can-man when he was younger. His dad of course and his older brother. That's pretty much it. Can-man was never bad, per se, he was just always what I called "particular." And now we know why. Yay?

So, that's what brings us today and why I'm going to try posting again. I need my space to get my thoughts out and I'm tired of wearing out Facebook to do it. Being a parent to a special needs child can oftentimes feel like a very lonely existence. You have friends, you have family, you have maybe a support group, teachers, etc. But there's always the times when you feel completely, and utterly alone. Here's hoping the blog helps. Because therapy is expensive and wine gives me hangovers.

Enjoy your Saturday, all.

Why I Don't Christmas Shop Early

2012-11-14T23:48:19Z

I got this for Can-man for Christmas. It was the first Christmas gift I've bought so far this year, I was so proud of myself for trying to get this stuff done earlier this time! But guess what? I'm going to let him have it when he wakes from his nap.

Why? Because we've had a hard week and I want to see him smile finally. I'm such a sucker.

We have had a hard week, though. Not sure what's going on with the little dude but I think a big piece to this puzzle is in milk. I can pretty much guess Can-man is lactose intolerant, we figured this out this past December after a terrible outbreak to cow's milk. He was on soy for about a week before he started being intolerant to that, too. Ok now we switched to almond milk. Months go by and everything is fine til all of a sudden, he can't tolerate it anymore (diarrhea, gas and constipation). I switched him to rice milk which isn't ideal but I'm running out of choices here.

A couple of weeks ago, I realized the brand of almond milk he had developed issues with isn't certified gluten free so I thought that might be the problem. I stopped giving him the interim rice milk and switched him to the certified gluten free almond milk... all is fine for 2 weeks until the same problems occur again. The only milk like substance that he doesn't have issues with (rice he doesn't have issues with YET but he doesn't like the taste) is the PediaSure. Which is pretty damn expensive and our insurance doesn't cover it. I still buy it but I try to not use it as our only source of milk (it's also high in sugar but believe me when I say I really don't give a shit about sugar at this point).

The reason why gas is such a huge issue for a kid his age is it affects his sleep, he'll wake in the night crying from pain and rarely will sleep past 5am when it's really bad. Because he's in pain and he hasn't gotten any sleep, he's VERY irritable. Gas pretty much makes life a living hell for all involved.

It's been really hard to do any type of research on my own because everything goes in circles:

Lactose intolerant? Drink soy (he can't have that). Soy intolerant? Drink almond milk. (Can't have that) Can't drink almond milk? ...... I can't really find the answer to that one. One blanket answer for all these issues in order to get extra calcium is to drink orange juice, which he loves, but gives him insanely bad diarrhea. I'm lost, and frustrated. Can-man's not feeling well, his toddler temper is coupled with not feeling well, very little sleep for us both and that leaves us with a very unhappy household.

So he gets the tool bench. Halfway through putting it together, I realized my mom would have done the exact same thing. Christmas in our house was pretty low-key as far as presents went. I remember clearly my mom asking us once, "Do you want gifts all year or do you want to get everything at Christmas?" My Aries patience reared its ugly head and replied, "All year, duh!"

So mom would approve, we'll see how R feels when I tell him.

***In my defense I don't even know if we'll be together as a family for Christmas, or where it will be. Part of me thinks we'll be in California so I couldn't have brought this anyway since the box was big. Yes, I usually do try to think of a practical excuse in addition to an emotional one. Call it being with a military man too long. ;)

Goals, I have them

2012-11-08T22:44:45Z

I've found through the whole working out/eating right process, it's best if I set little goals in my head. I try not to reward myself too much with food: we're not dogs, blah blah blah, even though I will say I'll arf arf all day if it produced a cupcake.

The goals also can't be too far out. Say, a 9 month deployment because all I'll do then is be like, "SCREW IT! I have plenty of time!" And then it comes down to the wire and I try to lose 20 pounds in 3 days.

Kinda like I am now.

I was cruising the NEX site the other day, if you've never shopped in one it's like if Wal-Mart and Macy's had a baby. Congratulations, you're the parents of a NEX!

I typically buy diapers and k-cups through them, as they're a SMIDGE cheaper there (not anything crazy, don't get jealous) and plus, I try to do a LOT of shopping online since shopping with Can-man is like shopping with the Tasmanian Devil. The NEX also doesn't charge sales tax which doesn't excite me in the least, since I live in a tax-free state.

Anyway, that day, I decided to cruise through the jeans section since sometimes when they get low on products, they cut the prices pretty low. Everyone has that pair of skinny jeans in their closet they can't quite fit into. My pair WAS a pair of 7s I had bought on my 30th birthday, which are size 32. I went many, many years where those jeans sat in my closet, untouched. Sad. A waste of a great pair of jeans.

That pair does fit now, but they're so worn that I rarely wear them. Now I have a pair of size 31 that fit, which was a pretty glorious day for me. I knew I was faltering on my fitness path when they started to get tight again. FYI: clothes tell the tale way more accurately than a scale ever will!

So I'm on the site (I'm wrapping it up, give me a sec) when I saw a pair of 7s on sale for about a 1/3 of the cost of the retail price. I go to select the 31, sold out. I go to select the 32, sold out (and good thing, too, why would I want a pair of jeans that were too big?) I'm thinking, ok what IS in stock, Nexy?! I select "30" and ... it's in stock. Do I dare? My bargain shopper started speaking to my fitness crazed self and said, "Bitch you got this, get the jeans."

The jeans did arrive today, of course they're too small. I got them to about mid-hip or a little higher. Better than I thought I would be so I had to laugh this is the first time I've ever been happy at too-small jeans.

The nice thing is, a goal! I have one. Wish me luck.

Follow Up and Up

2012-10-25T22:40:22Z

Can-man had his follow up appointment today from his endoscopy. His biopsy came back negative for Celiac Disease, which was a relief. I feel for anyone that either has Celiac Disease or have children that do. Although it has gotten easier lately to manage a gluten free diet, it still can be spendy and it's no fun having to be on a restricted diet while the rest of the world eats whatever the hell they want - blissfully unaware.

I do feel Can-man still has problems with gluten, and is probably gluten intolerant. His GI doctor doesn't seem COMPLETELY onboard with this notion, but he did say if I feel that it helps than to keep up with eliminating gluten from C's diet. I think his GI doctor more feels that if you don't have Celiac Disease, and since there is no testing for gluten intolerance, we can't definitively say that he is gluten intolerant.

There's been too many times that C has either accidentally had gluten or I've "tested" him by letting him have some, since May when this all started, and he'd have problems either that night or the next day. Usually sleeps terribly, waking up in the middle of the night crying, or waking for the day at 5am. All of that on top of constipation and a lot of gas. It's not a coincidence when it's happened numerous times.

After he went back off of gluten once his endoscopy was completed, within days he was eating better and sleeping better, the month he had to be on it was pretty hell-ish. I don't know if gluten is the source of all of his problems, but I do think it is a contributing factor. But enough about that.

One thing the endoscopy did seem to indicate is either acid reflux or eosinophilic esophagitis. Yeah, I don't know either. I'll be getting my Google on as far as the latter is concerned but as for the reflux, C will begin taking an acid blocker to hopefully remedy his inflamed lower esophagus which is what most concerns his GI doctor.

After a period of a couple of months, his GI doctor wants to perform another endoscopy to see if the acid blocker has done its job and C's esophogus has healed, and if it hasn't, our next course of action would be to begin treatment for EE - I'm not up for typing it out again.

That was a little discouraging. I'm hoping all he has is the reflux, the meds help him and C grows up and grows out of it (as I hear happens a lot of times with reflux in kids his age).

I want to leave you with the thought that you are your kid's best health case manager. I appreciate good doctors, and all of the care good medicine can provide, but getting to the bottom of what could be ailing our kids a lot of times falls to us. I don't mean we should be out here diagnosing our children (dangerous) but putting pieces together from doctor A, doctor B and telling doctor C so he/she can possibly better understand what could be going on.

Can-man's GI doctor told me I was smart for noticing Can-man started having a lot of growth problems once he was started on almond milk. C had a cow's milk reaction in December, bloody stool, hives for about a week, a really horrible experience. We tried soy milk, but after a few days, the same symptoms came back so we tried a few other milk alternatives when we finally settled on almond. Well, Can-man settled on it since it's the only one he would drink.

Can-man didn't gain one pound until July, when he started PediaSure after a failure to thrive diagnosis. I have long suspected the almond milk wasn't giving C the nutrients and calories his body needs, and his GI doctor agreed.

I'm not going to beat myself up over it, I'm not saying almond milk is bad, I'm not saying anyone shouldn't give it to their kids, especially when you're dealing with diet restrictions and there's only so many choices. What I am saying is you do your best with the information you have at the time, and you have to learn to adapt and change your course when you see something isn't working. We're all trying to do our best, that's all we can really do.

Thank you to those that offered their support during this time, it's been a little rough, I look forward to R returning from his deployment so he can share more of this with me. Maybe then I will relax a little. For now, the journey continues.