Friday, 27 November 2009
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A Holiday Minus The Gathering
This will be year number 4 that we've spent Thanksgiving at home instead of taking the 20 minute drive to my sister's house where all the sibs, their spouses and children gather for a potluck style feast.
Easter 2004 was the first holiday that Daniel vehemently protested entering the crowded dwelling with all the insulting sights, sounds, smells and loud squeals from the ever expanding crowd of toddlers. We managed to work him into the backyard through the side gate but this unusual direction would start off the day with less than a joyous tone. By Thanksgiving that same year it would become evident that we were embarking upon a new phase in the world of autism. It was Daniel's world and we had just become the unwitting co-inhabitants within.
The years before Daniel had tolerated the noise and unpredictable environment largely because he knew there was a massive shelf with every toy imaginable contained inside.. If there had been a huge giraffe greeting us at the door we could have sworn we were at Toys R Us. The child indulgent atmosphere was quite enticing for a 5 year old, 6 year old, 7 year old and 8 year old but finally it's power and the magical spell it placed upon him to endure the unbearable was gone.
That following Thanksgiving my husband chose to go alone and although I said "sure, this will save me the trouble of cooking" I was completely annoyed that I was left behind once again to be the caretaker while the more normal activities would be enjoyed by my spouse. It had happened before and always with my blessing. Our first and only airplane ride where I sat in the back of the plane watching Brian looking out the window in aw 8 rows ahead. There I was wrestling with our screaming toddler to keep him in the seat while the stewardess yells at me during the ascent to buckle him in. Then there was the trip to Disneyland where I spent hours in the hotel watching Daniel jump up and down on the bed while Brian explored the wonders of the Magic Kingdom with his father. I placed myself in the autism world with Daniel while my husband enjoyed these huge firsts with Brian. It was my choice and while I thought I was ok with it, the bitter taste it left buried beneath the surface would soon become known..
We started switching off with each passing event, one of us would attend the festivities with Brian while the other stayed home with Daniel and we would never again attend anything as a family but this did not feel right no matter what position you were in on that particular day. Competent and reliable respite services seemed to be in short supply and especially during the holidays plus I had never felt comfortable allowing Daniel to be the outsider in family traditions anyway so we may have just spawned our own tradition of being on the outside.
So for now family get-togethers have for better or worse become a thing of the past. Even weddings and funerals fall into the category of events we may have to skip out on.. To date we see no remedy for this situation , yet as surely as this turned into our new norm, I wouldn’t be surprised if a change was in store for us in the near future.
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Comments (13)
I understand this arrangement~ it's all too familiar. We are on the otherside of it now. Somehow~ God heals all of that disappoinment~ and gives back above and beyond all that was stolen during that long season. Hold tight~
@WildWomanOfTheWest@xanga - Thank you for those very kind words. I needed to hear that today for some reason. We are just starting to see some very thin rays of light shining through the long tunnel and that light is evidence of a bright light at the end. God Bless You!!
The first thing that popped into my head when I read this was a rather insensitive: He should learn to deal with it and get over it. The world is full of insulting smells, noises, and sights that can be annoying as hell.
The next thing that popped into my head was exactly how insensitive that sounds, especially now that I know what I know about autism.
Then from there, my reaction got lost in a swirl of thinking how stupid people can be and why I'm usually content with NOT having big gatherings of people, especially those containing a lot of little kids. Airplanes are torture. I don't like them. I'd rather drive 19 hours to PA than fly there. My ears hurt just thinking about it.
Disney is overwhelming... and I work there... I don't like going there much. I like the rides, but not the crowds. Too much to keep track of... very draining. It was kinda fun to wander around alone in the Magic Kingdom when I was 15 years old though. I couldn't even tell you what I went on if anything, only that I ate at the Pinoccio themed restaurant and spent most of the time wandering aimlessly talking to myself and being amazed at all the different languages I heard spoken there.
I can't imagine being Daniel though. I can't imagine not having words, no matter how jumbled up they get in my head, to tell people what is "wrong" or even what is "right". Words, as insufficient as they can be, are important. I can imagine being in your position though... given that I've often been left behind with the kids while John gets to go do stuff, sometimes taking one or more of them with him. Josh is usually pretty ok with being dragged along to all sorts of things, but I was dragging him along to things when he was an infant... He went with us to see Star Wars: The Phantom Menace when he was just a few months old. Spent the whole time either sleeping or nursing. (Who cares? It was a dark theater.) He was toted along to youth group meetings until they disbanded the older group because too many of us were bringing our babies with us. It was the 18-30 group... we were 21 so we went and brought the Gooball along too so neither of us would miss out. We didn't know at the time that Josh was autistic, and it didn't seem to bother him then either. Most people don't seem to drag their babies to places with loud music and lots of people... we did. I am wondering if Gooey isn't better off now because of such early exposure. He deals with things... still throws a fit sometimes when things aren't quite right... but he's working on it.
I know what you mean about the feeling of bitterness. Too often I put myself in that caretaker role willingly, but would love for once someone to just say "no, let me handle this for you this one time".
I hope you guys had a great day!
@keystspf@xanga - WOW!, you work at Disneyland. I'm sure it sounds like more fun than it really is. LOL
All the overpowering stimulus seemed to double in their assault on him when he entered into the wonderful world of puberty. There are slight improvements now that hormones seem to be leveling a bit but I think we still have a few more years of isolation. LOL
If he had it his way we would be in an electronics free house with no lighting, soundproofed with 3 fully packed refrigerators at his disposal. We both have to bend a little but of course it's easier for me to accomodate him in most cases only because I don't enjoy the battles but he knows he can't push too far. At school he is forced to deal with a lot of things he'd rather not be exposed to but that is the nature of the beast when you attend a school for autistic children. It's going to be a little noisy sometimes. That may be why I overcompensate to allow him some time to decompress long enough to be able to go down for a good nights sleep to start the process all over again the following day.
"sigh"
@gwacemom@momaroo - I admit I got a bit passive aggressive in my approach to how I dealt with the situation. I should have known that if I gave Bill the choice to either stay home or go he would go. That was really Stupid On My Part. LOL
It was a quiet and peaceful day, thank you. Now on to Christmas... ha ha
@P1AutismMom - Disney World actually. I've never been to Disneyland. I live near Orlando, FL.
I can understand the electronics free house with no lighting. I can hear? and feel lights when they are on, even with my eyes closed and my head under my pillow. I can hear the TV when it is turned on in Video mode, from all the way in the other room on the other end of our apartment. It is only because I love to write that I tolerate the noise of the computer. Thank God my new one isn't nearly as annoying as the old one. I grew up in a house full of electronics, my dad being a computer geek and audiophile. Electronic noise is something I have learned to live with. Ticking clocks and analog watches, on the other hand, do not last long around me.
Those drive me bonkers. It takes sheer will power for me to use the vacuum cleaner or garbage disposal.
Christmas... oooh fun. LIGHTS... ha ha ha. They always look cooler without my contacts. Without my contacts, my vision is really bad. I can't even see the E on the chart... so lights have halos and they all swirl together... Christmas is fun that way. It's like tripping without drugs... not that I've ever done drugs, but based on descriptions I've heard...I've wondered a few times if those descriptions are accurate, but haven't had the desire to actually find out first hand.
I never imagine how you could handle a special needs child while trying to cope with everyday life. I have a baby brother, Cyrus, still in elementary school (he's the little boy in my earlier blog pics), and yes, I have to take care of this excitable little kid. People couldn't believe that my sis and I have a little kid as our sibling... and there are times when I want to ditch my role as the big brother/father figure and just go out clubbing,
@keystspf@xanga - You sound a lot like me. I could not stand the light beaming from the kitchen under my bedroom door and I use a fan 365 days a year to drown out noises like barking dogs, cars, ets. Too bad the crickets are so loud. LOL
Danny squints a lot and has his hands over his ears about 99% of the time when he is out in public. I offer him sunglasses and headphones but I think he's happier compensating with a squint and his index fingers rather than feeling plastic on his face or head. I get that. I hate wearing jewelry so I take my wedding ring off when I'm at home and hats drive me nuts.
I doubt we will ever get to Orlando but I'd like to go to Disneyland again some day. It will just have to be on Superbowl Sunday when everyone else is at home in front of the TV. Crowds you know :). LOL
@Reckless@mancouch - I'm pretty sure my older sibs felt that way about us sometimes. I was number 8 in a group of 10. We're not even Catholic or Mormon, it just happened. LOL My mom and dad staggered their work schedules so that one of them was always home with us so the responsibility did not fall on my brothers and sisters too much. I can imagine it would be frustrating for you but I know that it will be something that will help to prepare you for when you become a father some day. :) Clubbing is more fun than babysitting. :)
@P1AutismMom - Is Danny's vision normal? I know mine wasn't and that made me squint a lot, but I refused to wear glasses, they bothered me. The only thing that made me wear them was the fact that without them I would never be allowed to drive. I tolerated them enough to get through getting my license (at age 20 and change), and then wore them only when I drove and sometimes to watch TV or movies... but taking me to a movie theater is a BAD idea most of the time. I was 21 years old when I finally got contact lenses. I am terrible about taking them out and putting them in, but they have since come out with the ones that I can wear for 30 days strait without worrying about it. This has made a lot of things easier to deal with... if I can see clearly, some things don't bother me quite as much. I can concentrate more on what I see than on the noise around me. I will wear sunglasses because after a while, squinting gives me a headache. It's just a matter of getting past the initial irritation of having them on my face that is difficult... but given the choice between a headache, tolerating sunglasses, or missing out on doing stuff outside... I'll take the sunglasses. I have black curtains on my bedroom windows to block out outside light.
I have had people suggest wearing ear plugs to block out noise so I can sleep... trouble is they also trap in noise. They create this high pitched sound that is incredibly irritating and they amplify my heartbeat and breathing to a level equivalent of a loud movie or concert with a lot of bass. I have yet to find anything that sufficiently dulls the outside noise without creating inside noise. Putting my hands over my ears works to a degree, but I can't sleep that way. So, crickets be well... darned... if they can be fixed like socks...LOL I deal with them, year round in Florida... Can't wait to move to a place with fewer bugs.
Cicaidas (sp? sounds like sick-aid-uz) are TORTURE... you know those noisy little clicking buggers that make that awful racket. Then there are the bats. Seriously, I can hear the bats. Thankfully that's only if I am outside at night... not inside.
@keystspf@xanga - I can't even imagine the noises from just your everyday insects much less what you encounter in Florida. My husband's neice moved to Orlando a few years ago and all she ever talks about are the bugs.
I know what you mean about the heart beat noise too. If I have my head just right on my pillow the thumping starts like an audio book version of the Tell Tale Heart.
The only type of vision screening we have been able to do with Dan is the chart with that big E and his physician tells me his sight is normal. I always thought he would have astigmatism like I do but apparently he doesn't. I also wonder about migraine because with my history and the fact that two of my nephews suffered with them during puberty it would not surprise me. I ask him "headache?" and of course he repeats "headache?" Then I ask, "do you need medicine?" and he usually sais no so on the rare occasion he sais yes he gets motrin right away.
We opt in for isolation, though for different reasons. (My family are asshats...the whole lot of them. Even my mother that I've been staying with these past few months drives me batty. Tim's family, save his mom, live in other states and we're just not up for all that travel - or the expense there of.) It's worked out for us so far. The kids seem content to stay home and play with their toys for most holidays and Tim and I are both a little anti-social by nature...