Monday, March 16, 2009

Some Days the Gap is Wider than Others

This post will not have pictures but we will be adding pictures and video asap--hopefully tonight.

The kids were invited to a little friend's birthday party. This is a big deal because they have never been to a friend's party other than their cousin Curry's. And that was different because they knew everyone there and it was at his house, which they recognize. It was also significant because there would be music, lots of people, gifts, singing, picture-taking, pizza, cake, ice cream...all of those normal pieces of childhood that most of us took for granted growing up. That set-up works great for most kids, but I knew that for at least 2 of my 3 it would be rough.

I was working, so Barbara and Brando took them to the party. Miss Patty was also there with another set of triplets. The party was for Yolanda's daughter Amy, who was turning 3. Yolanda is our other babysitter. So obviously Yolanda was there too. In short, the troops were all in place. We baked gluten-free pizza and gave digestive enzymes so the kiddos could try normal cake and ice cream. While I am not a big fan of kids loading up on sugar, I do think there is intrinsic social value to having 'normal' party experiences and not always having to eat something different, and not always falling into that other category. That category gets old fast. Since the kids have been on a GFCF diet for almost 2 years now, it is fairly safe to start re-introducing some foods with the use of enzymes to see if they are able to process them without increases in autistic behaviors.

So they get to the party and room with the inflatables no windows and is crowded, with loud music playing. Kynsie freaks the minute they get through the door and Patty has to take her out to the front room to help her regroup. Kyan did pretty well over all. He jumped some but didn't like the slides. After about 30 minutes though, he regressed to stimming by just running back and forth over and over and over. His body had absorbed all it could take and process, so he resorted to a coping mechanism that was soothing to him. Hey, it beats a screaming tantrum every day of the week, but it still makes my heart hurt that he couldn't just play and be normal.

If Kyan and Kynsie were our only kiddos, maybe I would think a lot less of this whole situation. But we also have Braylen who tends to be our posterchild for normal. From the minute they got to the party, he was in high gear. He LOVED it. He climbed the rock wall. Did the obstacle course. Went up and down the slide a billion times. He liked the cake and ice cream. All of it was right down his alley. Normal 3-year old kid. I want that for Kyan and Kynsie. I still remember birthday parties from my childhood. I want those to be positive memories for them.

You know, it is amazing the difference between Braylen and his siblings. When we are at home or just in our normal routine, the differences are more subtle. I think the controlled environment and the security it provides masks alot. But once we leave the bubble and get into regular life with all of its messiness and irregularity, the disinctions become painfully clear.

It's just really exhausting sometimes. It is hard enough to get 3 totally healthy 3-year-olds out the door and hope they behave at a social gathering. But for us, we have 2 wildcards. Autism can be as intense as it is frustrating and it is far too often unpredictable. Some days they surprise us and just roll with the punches. Other days, even the slightest irritant is a calamity. Slowing to stop at a traffic light can instigate a full-on, inconsolable Kyan tantrum. Seriously, what do you do with that? There is no reasoning with him at that point, but I can't just go about running red lights either. There are traffic cameras for heaven's sake. :) Not to mention safety issues.

I just have a hard time. I look at my friends with triplets or even just more than 1 healthy child, and I admit, I am envious. At this stage, life should be getting MUCH easier. No more bottles. Kids sleeping for 12 hours. Telling us what they need/want. Potty training. Yet, here we are. Not easier. Just different. I look at my friends and wonder, what is it like to just decide to go somewhere and then do it? What is it like to walk into church or a party, and not fear that the children will completely freak out with the slightest or no provocation? Just the logistics of triplets can be draining but dealing with Autism on top just sucks the life out some days. I know this sounds like a pitty-party. Maybe it is. I don't really want pity though. It doesn't change anything. What I want is change. I want it to be easier. I want things to get better, exponentially better. I am not so naive as to believe that just typing this in a blog post will somehow make those things happen, but I admit that somewhere inside me there is a hope that somehow giving a voice to my thoughts might help some way, some how. And truly, I don't even care about the how. Prayer. Magic wand....whatever. Just a reprieve would be nice. And I don't even want to be away from my kids. It's not their fault that things are the way they are. What I want is to be with them, and it not be so hard to be there. I want to be with them and not feel like my life blood is being sucked out every day by something none of us can control. I want with Kyan and Kynsie what I have with Braylen. There, I said it out loud.

2 weeks ago Braylen did not have school but the other 2 did. So he and I had a fun day. We came to my store for an hour for me to return emails and then we went to the mall to play in the play area. He LOVED it. He played nicely, made a couple new friends. Then when it was time to leave, no problem. We walked through the mall to look at the fountain and walk over the bridge. I told him we needed to go but we would get a special treat on the way out the door. He left without as much as a whimper. We got to the candy machines and got a quarter's worth of candy, and walked peacefully to the van. Once in the van, I told him we were going to get Kyan and Sis. On the way, I called an audible and decided to go through the drive-thru at Arby's. No screaming. He sat peacefully back there and ate his candies. We headed toward the school, and I pressed my luck and pulled into the gas station. I pumped gas with absolutely NO SCREAMING. Then we went to get Kynsie and Kyan.

Does all of this seem normal to you? I am guessing that it does but it was so foreign to me that I was just downright giddy on one hand and then completely depressed on the other. That is living. That is normal. That is what 3 year olds should be able to experience. Life without such intense anxiety that a schedule is required just to get through the day. Life that is peaceful and steady in its own right, not because we force and control it to be that way. I'm not sure this post has a point, so to speak. I haven't come up with a revelation that makes any of this better. Frankly I have no desire to do so. Change. What I want is change, and I want it yesterday. Again-please do not pray for my patience. I seriously don't need that right now :)

*Side note* Brandon will post videos and pictures from the party. Most of them are of Braylen because he was the only one really playing on the equipment.


Mindy said...

Oh girl, I SO wish I had a magic wand for you.

I called Merck the other day & got what sounded like a scripted response about there being an increase in demand for the combination vaccine & they have not made a decision yet on whether to permanently stop making the individual ones. Not sure what we'll do now - was still considering spacing out the individual ones (after getting titer levels checked), but I'm absolutely, positively not doing the combined.

All About the Bailey's said...

Sunny...I understand you oh so well. I too want change but change comes so slow, right? I take Ethan to Birthday parties every chance I get and he actually loves them....he does however start to stim after so long...I do try and leave soon after I see that...anyway just wanted you to know I'm with you on this!

Liz said...

Hi Sunny! I have been reading your blog for a few months now and have been touched by your "story". I have 20 month old BGB triplets two of which most likely are on the spectrum. I am in the early stages of how autism is affecting my life but I really understand what you are saying in this post. It is so hard and so unfair for our kids and us.