I have often thought it would be neat to have a blog. But then, would think..."how narcissistic!"
Who would possibly want to read about my day to day life? Maybe no one will. Maybe someday my kids will, and realize why Mom was so nuts.
Today was a day that made me change my mind about writing "out loud" where the public, or anyone else for that matter could see my thoughts. I imagine this is what coming out of the closet feels like...but here goes:
One of the therapists for our girls funded a pool membership for the family this summer, thinking it would be a good therapeutic outlet. We love to swim, Basil being the exception, unless the water is bathwater temperature. The therapists however have not been in the audience to see Kelsey's annual freak out to the water, but even she loves it once she gets past the first swim of the season. As she gains in skills, I keep thinking that this will be the last year this occurs.
I am wrong every year.
Every year, to date, Kelsey has an hour long temper tantrum screaming meltdown when it is time for a new experience in the pool. It seems like she forgets in the months between September and June, that she KNOWS how to swim. Every year I experience the meltdown including screaming (like someone is killing her) scratching, kicking, clinging. I am pretty sure this is a sensory defensiveness issue, but then it goes away after an hour, only to return next season.
Since we got this out of the way back in June, and she's been fine since, including swims in the rough surf in 60 degree ocean water, I assumed going to a different community pool would be no problem. Well, you know what they say about assuming....
We had yet another meltdown today. We went to a different community pool. Variety is the spice of life, right? Not so for an autistic child. Change from routine is bad. But as the song says "life's about changes, nothing ever stays the same..."(Patti Loveless "how can I help you to say goodbye" Sony records 1993.)
She has to learn how to deal with change or she will not be able to function in this world...
It was a very bad experience. My shoulder is scratched, my head aches, and my ears are still ringing and we managed to alienate ourselves from every man, woman and child as a result of the freak out.
But...I had a visitor to the island today...appropriately, a lifeguard. She asked if we were OK. I had to explain to her that yes, Kelsey is autistic and is sensory defensive and needs to get acclimated to everyday life experiences because she cannot live in a bubble. I feel a strong need to work through this behavior since we (her parents) will not always be here. If her non affected siblings decide to take her in, in the event of our passing, I cannot imagine them having to deal with these same issues when she is an adult. Not to mention, that I am not about to rob the rest of my kids from swimming, when I know that eventually I can help Kelsey work through this.
Kelsey looks like a typical 7 year old. Autism doesn't have many physical characteristics, if any at all, so when I have to explain to someone why my daughter is completely freaking out, a lot of people give me strange looks, nod their heads and walk away.
I'm not the popular mom that everyone talks to, whose kids are admired by others for their diving, swimming, handstands underwater. I am the bad mom who can't control their child's temper tantrum. They don't understand autism when they see it.
Kelsey did calm down and stand in the water. Eventually, she was even able to tell me that she couldn't beat to stand on the black "T"s in the water (the lines painted on the floor of the pool for swimmers to follow while doing laps) which is a very autistic thing to do. Once that was established, she walked on the blue sections, and swam over the "T"s, and had a lovely time. The young lady lifeguard and I shared a "thumbs up" from across the pool. All was well....
Except we were still the pariahs of the pool.
Makes me think of the "Scarlet Letter" and how maybe if I actually wore a scarlet A (for autism) that maybe we wouldn't be shunned...as much perhaps. At least maybe someone would be able to identify who we are and what we are dealing with.
On the way out, I shared Kelsey's thought process with the lifeguard, regarding the "Black T's," feeling like I should explain what had set Kelsey off since I finally had a clue.
She shared with me that another mother had asked her to have us leave the pool. Fortunately for me, this lifeguard has a young cousin with autism, so as soon as I told her about Kelsey, while I was struggling with her in the water, she understood. Had it been another guard, I might not have been so lucky. At least we had one visitor to the island today, who speaks the native tongue and understands the customs.
All hail the female lifeguard with the short blonde hair at Pembryn Pool. Welcome to the island.
Hey Billie! Keep blogging! You can vent and hopefully help other mom's too. I can tell you that even if I had seen the tantrum, I would not think you are a "bad mom." I don't know if you know, but Andrew was diagnosed in first grade with PDD-NOS. It is very mild, and really we have to deal with symptoms as they arise. I can NOT imagine having to deal with all that you do. Andrew just learned to swim last year (9) Prior to that he would not put his head under or jump in. He would not go in the deep pool even with Andy or myself. He would yell and panic and clutch onto us and cry afterward. His buddies were all starting to jump in the big pool and go off of the dives. It was heart breaking to watch him try to make up games to keep them in the 3 foot pool AND ensure that his part in the game did not involve going under. This year is our first truly relaxing year at the pool. All kids including Autistic ones continue to grow and develop. Hopefully you will someday get to relax at the pool too.
ReplyDeleteAnd no matter how bad the tantrum, I know people will stare, make judgements etc, but remember not EVERYONE is, and that really we are all a bit self centered, honestly more are probably just thinking "Jeez, poor mom, glad it is not me, than, "what a bad Mom." And ones that are so judgemental... who wants to be friendly with them anyway?
Just read a good book called "Look Me In the Eye" Written by an adult with Asberger's . It is a memoir of his life that I found fascinating and hopeful, and provides some insight to an Aspie's thought processes. Some resources for autism listed in there too.