Hello all,
I'm new to Autism Learning Felt, but not to parenting special needs children. My story is a long and ongoing one, but you can read all about it on my special needs parenting site. The short version is that I am the mother of two special needs children, both on the Autism spectrum, 13yo Jessie and the 7yo Tazmanian Devil.
Both kids have different issues: Jessie used to be non-verbal and still is to a certain extent, especially when she is tired or flustered. Taz has major sensory issues, with sounds, textures and smells, which worsen if he's tired, hungry or getting sick.
We try to plan our days in advance and leave plenty of room for flexibility, but it's very hard, often impossible, when we're trying to please everyone or rather when we're trying to please both kids at the same time. Most of our outings end in sensory overload, i.e., one or both children melt down.
This whole week was a typical example of one meltdown after another.
As many of you probably know, North Georgia was subject to record flooding just two weeks ago today. The kids missed a week of school, which meant that both mom (me) and dad were stuck working from home with two ASD kids for five days straight, three of them with no running water. Don't get me wrong, we were blessed. We had food, electricity and a dry roof over our heads.
We spent last weekend cleaning up from the mess and most of this week driving around the numerous road detours just to get to school, work and our regular evening activities.
Wednesday night we went to the fair; a trip, which we had planned well in advance, since it was our only free night/day to go. We were an hour late getting there, because of all the traffic, Taz was humming in the backseat, which he frequently does to calm himself during car rides, and Jessie was freaking out in the middle seat, because her arm hurt and Taz was humming.
A 7yo in the middle of a 2yo meltdown is a sight to see, but a 13yo is unbelievable, especially when the meltdown is combined with a panic attack complete with hyperventilating.
We should have turned around, but we didn't, because that was our only chance to go to the fair this year and I really wanted to see if one of my photographs, which I entered just hours before the floods hit, had won an award.
So on to the fair we went.
It was a lose-lose situation.
The kids only rode about 4 rides each after we spent $50 on tickets, I wasted half my cash trying to win a couple of 30 cent goldfish to replace the huge ones in our backyard pond that were lost in the flood, Taz melted back down, because I would not waste my last $5 dollars on the fish game, and then he melted down some more because the only thing at the fair which was gluten-free/casein-free was a tiny package of cotton candy for $5. Naturally Dh and I refused to give an overstimulated, severely ADHD/autistic child, pure sugar when he was already hyper-stimming without it.
And, to top it all off, I couldn't find my favorite photo in any of the displays, so Jessie nearly lost it again. The photo was an action shot of her playing soccer and it took me several minutes to explain to her that it was a digital photo and I did not lose the original one.
In the end, we only stayed for a little over an hour.
At this point, you're probably thinking that our fair experience was nothing more than what every parent experiences on such an occasion.
All children whine when they are hungry and tired or when they run out of ride tickets and have no money to waste on games and rides. They also scream when their parents tell them its time to go after they've ridden the roller coaster for the umpteenth time.
My kids scream from sensory overload. Too many lights, too much noise and too much motion. We had a good time at the fair the past couple of years, because we went on the last Sunday morning when practically no one was there and the kids could ride for free for the first 2 hours. We left when everyone started showing up.
This year, we had a choice. Go on a weekday night, when the kids were already tired and hungry and the fair was packed, or not go at all. We really should have opted for NOT. A lesson well learned and a mistake that we will not repeat next year.
All was not lost, however, since we found my soccer photo on the way back to the car. Turns out my photo did win a prize and Jessie spotted it immediately high on a wall with other sports memorabilia.
You would think that I could spot a picture of my own child from a mile away, but that is my life in a nut shell. I have just enough energy to get through life with two special needs children, one day at a time. I never see the forest, because I'm too busy caring for my two trees.
And, on the way home, my tallest tree was beaming about her award winning picture. . .hers, not mine, while my smallest tree was happily hugging his $.50 blow up Scooby Doo, which I bought him on the way to the gate, with my last $5.
I never know what will cause them to melt down or what will make them deliriously happy, but I will do anything to avoid the former and/or experience the latter and, in the future, I will strive to remember that it is better for my kids to miss the fair, then to go on a busy night when they are tired and hungry, just so we can say that we went this year.
Nianya
Website: www.magicalmischiefmaker.com/
Twitter: @MagicalMischief
4 comments:
I have several ASD children, 2 are severe. My 15yo has meltdowns; my 4yo is typically mellower. Although we went to an "autism fun day" recently & of all people, my 4yo was the one to totally meltdown. We left with him in full meltdown mode. At least it was in a place where we didn't get the "looks" we would typically get anywhere else! (you can read about that outing on my blog). I think I know why but cannot be sure. It is tough, but moreso when they get older. Interestingly, my 15yo usually just had meltdowns at home, not typically out anymore (hopefully!). But then I'm pretty careful where I bring them...just in case!
Thanks for sharing! I have two special needs kids, one, 11yo, with ASD. We often try to "plow through" a tough situation for the family memory or the experience we don't want to miss. It's a trade off, and it's hard, but you need your memories and experiences as a family, too. Although sometimes when we revisit our past experiences, the 11yo will say he never wants to do that again, most of the time we find he doesn't even remember the melt down; his memory was of something good. That's nice to know. It's hard to make these choices... it feels great to hit a home run... even if you don't know you did it for weeks/months down the road.
Been there, done that.
I have one ASD kid and one NT. Sometimes it means the ASD kid gets overloaded so that the NT kid doesn't miss out; sometimes she misses out because ASD boy gets overwhelmed. (Perfect example: Disneyland, but short visit.)
It's always a major balancing act.
One thing I learned the hard way from my ASD daughter: What she values and what I value aren't always the same. When she was smaller, I wanted those classic family experiences, like big birthday parties or nights at the roller rink, and it took me a surprisingly long time to figure out some of these things weren't fun for HER. (Of course, nor were they for me, once the meltdown started). Sometimes I think I just wanted to create an illusion of "normalcy," but since then we've found things that we both enjoy. That's most important.
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