No one who isn't living the life can truly understand what life is like as a parent of a severely Autistic child. You just can't. Every parent's experience is different whether a neurotypical child or otherwise. This is just my experience and doesn't necessarily reflect on anyone else's.
One thing you don't think about much is the noise. No, my son doesn't know any 'real' words, but he does have his own language interspersed with bits of songs and echolalia. It's a near constant racket of loud hoots, snaps, claps, thumping of feet, screaming and crying, and yes, giggles too. I will likely never have an adult life again. All of the knickknacks and sentimental items have been packed away as so many have been destroyed by curious hands and flying objects. You may notice that I don't indent my paragraphs or use too many actual numerals; that is because he has destroyed the tab key and a lot of the numbers to boot. We don't get invited out with friends or playdates (with one exception of an amazing friend of mine). We don't get to go out as a couple sans kiddo (who would/could watch him?). We are very restricted on what he is willing and able to do and tolerate. Even things you'd think would be a hit sometimes flop horribly.
All of the fears you prepared and researched for are no longer valid. We have to live in the moment only. Sure we have to prepare for the day when we are no longer here, but as far as worrying about saving for college, teaching to tie shoes, where to store all of the artwork (he won't do any of it), filling out the baby book we're out of the loop. At almost 5, he can't put on any clothes or take them off, he HATES any kind of coloring, gluing, painting, etc, and his last milestone was years ago that the baby book had a blank for. Instead, we learn to sing along to his 'songs' and cheer when he cheers and play with the same baby toys we have always played with when he is interested in them.
The near constant replacement of necessities negates fun buys or extras. We just had to entirely replace the toilet from something being flushed down and way too stuck for the plumber to get out. We have our own snake as this is a regular occurrence, but it just wasn't enough. Had to replace the dishwasher from too many button pushing episodes as well. Still need to get a new couch as ours is completely sprung after only two years. It isn't a week around here unless something gets broken beyond repair.
Our son is currently in preschool at a developmental center. At a recent IEP, I was told that because of how delayed he is (current evals put him at a 1yr old level), he will be able to remain there until he is six instead of kicked out at five. So, I have an extra year to attempt to find an elementary school that will give him what he needs to thrive as much as possible. I don't worry about private schools, Montessori, or any of that. I worry that he won't be abused and ignored and not be able to tell me. I worry that at some point, they will give up on him learning any new skills and leave him a room to rot.
We also have a lot of the 'common' Autism things going on like super picky diet (5 unhealthy foods and still insists on a bottle), lack of sleep, not potty trained, no self care at all actually, etc. As he is our only kiddo, I can't imagine what parents with kids this age that are NT deal with and what their issues are. We all only want what's best for our kids no matter what and for them to be as healthy and happy as possible. Our kids with Autism are just like any other kids in a lot of ways, they are just delayed on their development. Sure, my son is almost 5 and tall for his age to boot, but he's really only about a year old. When you see him doing his thing, if you just imagine a 1yr old you'll see it's really close to the same. He can't help that his body is growing too fast to keep up with for him. So, the next time you see the frazzled looking mom with dark circles under her eyes and hooting as loud as possible child, say hello and maybe offer a cup of coffee. We're all in this together.
Monday, July 7, 2014
Sunday, February 16, 2014
Long Time No Post
I have had some laptop issues, so it's been a bit.
Our son started preschool at a developmental center (M-F 8-3 no vacation days) and was just getting adjusted when he got super sick. He also got me super sick. It was a very hard adjustment back, but he seems to be getting the hang of it. Unfortunately, the illness has made him forgo any solid food at all. Not a bite for over a month now. We managed to get him to eat some chips this week, but he just wants his instant breakfast and cherry tootsie pops.
I don't know if you realize, but cherry isn't a common flavor in the variety bags and you can't really find them to buy them individually. We hit a jackpot during Valentines as they had entire bags of just cherry! We loaded up! However, at his rate of asking for sucker after sucker all day, they are not going to last long. If we refuse him a sucker or tell him they are all gone, he gets incredibly violent. I have bruises along my sides and back from him kicking me. We are at a loss as to what to do to eliminate these tantrums. How do you reason with a kid that has a very limited vocabulary that he understands and even less that he speaks?
Our son started preschool at a developmental center (M-F 8-3 no vacation days) and was just getting adjusted when he got super sick. He also got me super sick. It was a very hard adjustment back, but he seems to be getting the hang of it. Unfortunately, the illness has made him forgo any solid food at all. Not a bite for over a month now. We managed to get him to eat some chips this week, but he just wants his instant breakfast and cherry tootsie pops.
I don't know if you realize, but cherry isn't a common flavor in the variety bags and you can't really find them to buy them individually. We hit a jackpot during Valentines as they had entire bags of just cherry! We loaded up! However, at his rate of asking for sucker after sucker all day, they are not going to last long. If we refuse him a sucker or tell him they are all gone, he gets incredibly violent. I have bruises along my sides and back from him kicking me. We are at a loss as to what to do to eliminate these tantrums. How do you reason with a kid that has a very limited vocabulary that he understands and even less that he speaks?
Wednesday, December 25, 2013
As the last A Christmas Story wraps up on TV and we can finally say it's over and done with, I'm taking the time to reflect on the year.
I got closer to people I wanted to and further from those I felt necessary...and I count that as a win.
Ian made great strides in language and engagement. We still have a long way to go on this one, but progress is happening and it is amazing. In recent weeks, he has begun again to sing a few songs some which you can not understand, but ABCs is really clear. He also began to spontaneously call me Mama which is more than I thought I would ever hear from him. He went from being terrified to go down stairs to getting in his own carseat and climbing anything he thinks is climbable (a source of many arguments). In short, the season has ended with a bang.
I reconnected with some old friends whom I have actually never met in person, but whom I have known for about a decade now. We all used to post on a message board and recently found each other again on facebook. It is comforting to have such a source of strength and wisdom without judgement (or at least much) and sharing of lives and friendship throughout all these years. Even if we NEVER all meet, we will still remain support for one another for many years to come I am sure. One, in fact, sent my son an iPad when his was stolen a few months ago. How amazing and generous is that? They remain inspiring to me, not just because of the generosity to one another, but through all of the adversity and tragedy they have overcome. You really couldn't ask for a more diverse group of women (and man or two) to help you through all that is bad and show you all that is good in the world.
The event of Christmas was tough on the little man this year. He has gotten rigid in his routines and there were people he doesn't see very often at all and different things happening and he'd rather have cuddled up with his iPad in his PJs. I felt for him (don't we all feel this way at times?) and will have to plan accordingly next year. I had frustrations and sad moments myself. It was probably my Grandmother's last Christmas (91 and in poor health) and she couldn't make it to the festivities and I felt like our visit was too short. I hated leaving her in her chair watching TV with a plate of food in front of her, but Ian wasn't going to stay one minute longer. There were missing spouses that were taboo subjects and sad people, frustrated people, and flat out angry people. Unfortunately, not a lot of happy ones. While a child like Ian may not appear to listen, he understands most words and certainly vibes and this added to his agitation. However, gingerbread houses were somewhat done, decorating was somewhat done, and presents that were loved were given and received and there was joy to be had even if you had to dig a little for it.
Despite this year having so many ups and downs, losing a pet, having a terminally ill pet, house issues (including a water leak from the roof Christmas Eve along with a blown outlet), Ian finding his voice, almost potty training, feeling more comfortable in his own skin and in this world, and so much more, it has been a good year overall. It's easy to focus on the bad and complain and do nothing to change y our situation. It's a much braver (and healthier) thing to brush it off and move on as best you can.
I hope everyone can appreciate the amount they have grown over the past year and I wish for everyone to grab every opportunity in 2014 to be the person they want to become rather than worrying about everything that came before.
Merry Christmas everyone
I got closer to people I wanted to and further from those I felt necessary...and I count that as a win.
Ian made great strides in language and engagement. We still have a long way to go on this one, but progress is happening and it is amazing. In recent weeks, he has begun again to sing a few songs some which you can not understand, but ABCs is really clear. He also began to spontaneously call me Mama which is more than I thought I would ever hear from him. He went from being terrified to go down stairs to getting in his own carseat and climbing anything he thinks is climbable (a source of many arguments). In short, the season has ended with a bang.
I reconnected with some old friends whom I have actually never met in person, but whom I have known for about a decade now. We all used to post on a message board and recently found each other again on facebook. It is comforting to have such a source of strength and wisdom without judgement (or at least much) and sharing of lives and friendship throughout all these years. Even if we NEVER all meet, we will still remain support for one another for many years to come I am sure. One, in fact, sent my son an iPad when his was stolen a few months ago. How amazing and generous is that? They remain inspiring to me, not just because of the generosity to one another, but through all of the adversity and tragedy they have overcome. You really couldn't ask for a more diverse group of women (and man or two) to help you through all that is bad and show you all that is good in the world.
The event of Christmas was tough on the little man this year. He has gotten rigid in his routines and there were people he doesn't see very often at all and different things happening and he'd rather have cuddled up with his iPad in his PJs. I felt for him (don't we all feel this way at times?) and will have to plan accordingly next year. I had frustrations and sad moments myself. It was probably my Grandmother's last Christmas (91 and in poor health) and she couldn't make it to the festivities and I felt like our visit was too short. I hated leaving her in her chair watching TV with a plate of food in front of her, but Ian wasn't going to stay one minute longer. There were missing spouses that were taboo subjects and sad people, frustrated people, and flat out angry people. Unfortunately, not a lot of happy ones. While a child like Ian may not appear to listen, he understands most words and certainly vibes and this added to his agitation. However, gingerbread houses were somewhat done, decorating was somewhat done, and presents that were loved were given and received and there was joy to be had even if you had to dig a little for it.
Despite this year having so many ups and downs, losing a pet, having a terminally ill pet, house issues (including a water leak from the roof Christmas Eve along with a blown outlet), Ian finding his voice, almost potty training, feeling more comfortable in his own skin and in this world, and so much more, it has been a good year overall. It's easy to focus on the bad and complain and do nothing to change y our situation. It's a much braver (and healthier) thing to brush it off and move on as best you can.
I hope everyone can appreciate the amount they have grown over the past year and I wish for everyone to grab every opportunity in 2014 to be the person they want to become rather than worrying about everything that came before.
Merry Christmas everyone
Tuesday, December 3, 2013
Unexpected Expenses
By now, you've read up on all of the horror stories about the expense of having a child with Autism. You may have priced the added expense of TEFRA, extra therapies like ABA or Hippotherapy, even the costs of therapy swings and trampolines, but there is a lurker in your madness.
Ian loves to spin things, clap, and above all jump. He will spin ANYTHING and things you thought were indestructible suddenly aren't. My parents have a brass singing bowl (used for meditation). We are talking solid brass. This bowl was amazing at gouging furniture when spun with alacrity. Furniture, dishes, knickknacks, plastic cups, DVDs, watering cans!, TV remotes, and lamp shades are all just some of the things spun to extinction around here. Constant clapping has lead to earplugs, mittens, tons of lotion for chapped hands from clapping, but nothing major there as far as being costly unless you count being boxed from trying to stop him.
By far, the most expensive is the jumping. Oh the wonders of jumping. It all starts with a jumperoo. Soon, you buy a trampoline. Eventually, you are buying new crib mattresses every month or so. Sure, they are under warranty, but you can't just take them back to the store for a new one. You have to contact the manufacturer and send them the old one, so you need at least two to rotate out as they jump through the lining time and time again. Also, you get to buy springs for the crib base on a monthly basis as those wear out too. This applies to toddler beds as they also use the base and crib mattresses. Then, before you know it, you are out buying yet another new couch as yours has ripped to shreds and become impossibly lumpy as the trampoline is NEVER enough(and you will be replacing those too btw). One day, you are wondering what is happening to your house. You see, when you live in a late 1960s house with a crawlspace and have a now 60lb 4yr old jumping for all he's worth for 4-5hrs a day at about one jump per second (that's 18,000 jumps a day, folks!), it is like a tremor of a minor earthquake with every jump. Things begin to move. Suddenly, all of that careful caulking around built-in bookshelves and around windows and even sheetrock above doorways begins to crack. You are terrified to look under the house at the joists.
You will find yourself buying every toy you can find in the hopes that maybe it will be something that will engage your child and even possibly get them to interact with you. You may even be in the position where you will spend any amount of money in order for them to entertain themselves for 10min so that you can regain some sanity (or a shower). You tip the hair stylist double for putting up with the fighting. In fact, any tipping is pretty much doubled because of the racket and/or mess and lack of eating. Oh yes, forgot to mention that one. Ian almost doesn't eat anything ever. If we want to eat out, the only way is and iPad and Skittles and sippy cup (which we go through 3-4 of per week as he chews them up, but refuses to drink out of anything else) containing his specific brand of orange juice since that is all he will ingest. No longer do I even bother ordering him his own fun plates of food. Of course, with every meal I offer him a bite of everything on mine, but he always refuses. Oh and we are also on our second iPad (long story there, but it was beginning to fail after having the power cord jerked out multiple times and multiple cords).
Some things are actually cheaper. Because of his diagnosis, we have to pay a small monthly fee for TEFRA and his schooling is covered by them. So, he will go to private school more or less for extremely cheap (at least through pre-k and further if we want to drive a bit). He doesn't care about his clothes, so Walmart or Target duds are a-ok for him. He doesn't talk and doesn't have a bunch of fluctuating interests, so no gimme gimme on toys with the exception of Yo Gabba Gabba merch (or occasionally Mickey Mouse) which is rather difficult to find for some reason even though it keeps winning awards. He doesn't like birthday parties, so no big expense there either. He won't even eat the cake! He really is not interested in the bigger kid toys like the ride-on jeeps, so no reason to buy those. He doesn't pretend play at all, so no need for those toys either. Ian is at his happiest when you roughhouse and engage him in active play (no toys required!) and unless you factor in Tylenol and medical massages from flinging 60lbs of solid muscle around, it's totally free.
Ian loves to spin things, clap, and above all jump. He will spin ANYTHING and things you thought were indestructible suddenly aren't. My parents have a brass singing bowl (used for meditation). We are talking solid brass. This bowl was amazing at gouging furniture when spun with alacrity. Furniture, dishes, knickknacks, plastic cups, DVDs, watering cans!, TV remotes, and lamp shades are all just some of the things spun to extinction around here. Constant clapping has lead to earplugs, mittens, tons of lotion for chapped hands from clapping, but nothing major there as far as being costly unless you count being boxed from trying to stop him.
By far, the most expensive is the jumping. Oh the wonders of jumping. It all starts with a jumperoo. Soon, you buy a trampoline. Eventually, you are buying new crib mattresses every month or so. Sure, they are under warranty, but you can't just take them back to the store for a new one. You have to contact the manufacturer and send them the old one, so you need at least two to rotate out as they jump through the lining time and time again. Also, you get to buy springs for the crib base on a monthly basis as those wear out too. This applies to toddler beds as they also use the base and crib mattresses. Then, before you know it, you are out buying yet another new couch as yours has ripped to shreds and become impossibly lumpy as the trampoline is NEVER enough(and you will be replacing those too btw). One day, you are wondering what is happening to your house. You see, when you live in a late 1960s house with a crawlspace and have a now 60lb 4yr old jumping for all he's worth for 4-5hrs a day at about one jump per second (that's 18,000 jumps a day, folks!), it is like a tremor of a minor earthquake with every jump. Things begin to move. Suddenly, all of that careful caulking around built-in bookshelves and around windows and even sheetrock above doorways begins to crack. You are terrified to look under the house at the joists.
You will find yourself buying every toy you can find in the hopes that maybe it will be something that will engage your child and even possibly get them to interact with you. You may even be in the position where you will spend any amount of money in order for them to entertain themselves for 10min so that you can regain some sanity (or a shower). You tip the hair stylist double for putting up with the fighting. In fact, any tipping is pretty much doubled because of the racket and/or mess and lack of eating. Oh yes, forgot to mention that one. Ian almost doesn't eat anything ever. If we want to eat out, the only way is and iPad and Skittles and sippy cup (which we go through 3-4 of per week as he chews them up, but refuses to drink out of anything else) containing his specific brand of orange juice since that is all he will ingest. No longer do I even bother ordering him his own fun plates of food. Of course, with every meal I offer him a bite of everything on mine, but he always refuses. Oh and we are also on our second iPad (long story there, but it was beginning to fail after having the power cord jerked out multiple times and multiple cords).
Some things are actually cheaper. Because of his diagnosis, we have to pay a small monthly fee for TEFRA and his schooling is covered by them. So, he will go to private school more or less for extremely cheap (at least through pre-k and further if we want to drive a bit). He doesn't care about his clothes, so Walmart or Target duds are a-ok for him. He doesn't talk and doesn't have a bunch of fluctuating interests, so no gimme gimme on toys with the exception of Yo Gabba Gabba merch (or occasionally Mickey Mouse) which is rather difficult to find for some reason even though it keeps winning awards. He doesn't like birthday parties, so no big expense there either. He won't even eat the cake! He really is not interested in the bigger kid toys like the ride-on jeeps, so no reason to buy those. He doesn't pretend play at all, so no need for those toys either. Ian is at his happiest when you roughhouse and engage him in active play (no toys required!) and unless you factor in Tylenol and medical massages from flinging 60lbs of solid muscle around, it's totally free.
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