I was tired this morning. Because of the chronic reason of this school year. From the beginning almost, Gabriel has stayed up entirely too late for lacrosse practice or to put his school work back together from poor choices. And then Elise is up before anyone's alarms even THINK about going off. After 7 days of this, I am reduced to sleeping in on Saturday (praying nothing goes south) or snatched naps (when I ought to be cleaning, doing laundry, or any number of things).
So I turned on Elise's current favorite new movie, Flushed Away, and hovered in the entirely unrestful sleep where parents go to listen for disasters, but get some needed energy.
My bells did not go off early enough today...I realized that Elise was not in the bed with me...about the time she came back in with chocolate on her face.
The chocolate from her brother's birthday party cake (for TONIGHT) that I made last night.
*sigh*
I came out to survey the damage that I KNEW must have been done, to find that the entire top half of the cake had been smushed into the entire back half of my house and the top of the (CLEAN!) laundry. I have been scrubbing the runner rug, washing the walls, re-running the laundry, and scrubbing the washer and drier of cake ever since. It was rather like the first scene from Encino Man when he is "defrosted".
I am thankful that I had not yet iced it, because I was able to repair it, by removing the mauled top half and cutting it down to a rhombus shape to plunk on top and filling in the holes with crumbled off cake. It looks like a Dr Seuss kind of thing now. It will still taste pretty great, but Gabriel's friends may think his mother is two steps from crazy...which is probably true.
Beside the frustrating part of having to clean something I had not planned on cleaning, I am faced with Amelia and Charlotte telling off their sister and the permanent assumption that if something has gone wrong, it is Elise's fault. Which, truthfully, is not ALWAYS the case. But because Elise does not have the speech to defend herself, she has become the Fall Guy. And it breaks my heart...and we have come around to the necessity of speech/communication...yet again. And so I am *again* faced with defending the (currently) guilty Elise, while I clean what I didn't want to, and reprimanding my two typ kids from being too judgemental, and calling a check to their feeding frenzy of guilt assignment....when all I wanted to be was asleep.
I am still deciding if Elise will not get "cake WITH friends" (her staple touchstone of joy) because of her indulgence this morning...or if we will decide that she has done her time out, and carry on with the day...
With the stress of this week, I think we all deserve Cake With Friends, because it is delicious....and everybody needs cake to celebrate something....
Showing posts with label choices. Show all posts
Showing posts with label choices. Show all posts
Saturday, September 15, 2012
Saturday, August 4, 2012
Eating
As I said before, we engaged a private Speech therapist for Elise this summer. She was able to get some additional time with her by adding a "feeding" portion to her appointments. I was hopeful, but to be completely honest, I wasn't sure it would make a significance difference without a LOT of intervention. But I felt that whatever time she could spend on it and interacting with the therapist would not be wasted.
For those who have missed some key points, on top of the Downs, Elise has some serious, and somewhat debilitating sensory issues. These were also aggravated by the effects of the chemo. The flavors of things got really "Off" for a while. Eating has been a serious nightmare for about 8 years now...
Scroll forward to today, Elise was hungry (when is she not??) and was whining to eat. I said sure, she could have a couple for bites of the pork I was putting in supper...and she snarfed them down quickly and started begging for more. I said that the rest was mine and I had already mixed the pulled pork in with some spinach and drizzled some rasberry vinegarette on it. She, of course, was not willing to back down, yet. Finally, I offered her a bite, usually she backs down on that one..but she said "Ahh". So I let her have a bite. She gobbled it down and begged for more...and more...and MORE. She ate 6 BIG bites. Usually looking at spinach on her plate will cause her to gag. BUT SHE ATE IT!! I was seriously shocked.
Also, our littlest has serious allergies to dyes and preservatives. So we have slowly been overhauling our eating habits. Everything has been changed. And Elise has really not enjoyed it. AT ALL. But she's getting used to it. And even, in some cases, really coming to like it!!
This week alone, she has eaten and ENJOYED:
Scratch hummus and pita chips (although she's been caught sneaking it on corn chips!)
Spaghetti with pulled pork, fresh basil, fresh diced tomatoes and parmesean cheese, topped with mozzarella
Mashed potatoes
Raw spinach
Ginger dressing
Homemade greek yogurt ice cream
Honey on her pancakes
Applesauce on peanut butter toast
At therapy she has eaten pistachios and almonds. She bit a carrot (and then spit it out). And both of those are HUGE.
Okay. You may not be properly impressed. But consider this. Elise does NOT eat new food without retching. She eats only combinations she recognizes. She would happily subsist on crackers and toast.
I am really excited that we will be able to pull off real meals MUCH sooner than I would have EVER expected. EVER!!
For those who have missed some key points, on top of the Downs, Elise has some serious, and somewhat debilitating sensory issues. These were also aggravated by the effects of the chemo. The flavors of things got really "Off" for a while. Eating has been a serious nightmare for about 8 years now...
Scroll forward to today, Elise was hungry (when is she not??) and was whining to eat. I said sure, she could have a couple for bites of the pork I was putting in supper...and she snarfed them down quickly and started begging for more. I said that the rest was mine and I had already mixed the pulled pork in with some spinach and drizzled some rasberry vinegarette on it. She, of course, was not willing to back down, yet. Finally, I offered her a bite, usually she backs down on that one..but she said "Ahh". So I let her have a bite. She gobbled it down and begged for more...and more...and MORE. She ate 6 BIG bites. Usually looking at spinach on her plate will cause her to gag. BUT SHE ATE IT!! I was seriously shocked.
Also, our littlest has serious allergies to dyes and preservatives. So we have slowly been overhauling our eating habits. Everything has been changed. And Elise has really not enjoyed it. AT ALL. But she's getting used to it. And even, in some cases, really coming to like it!!
This week alone, she has eaten and ENJOYED:
Scratch hummus and pita chips (although she's been caught sneaking it on corn chips!)
Spaghetti with pulled pork, fresh basil, fresh diced tomatoes and parmesean cheese, topped with mozzarella
Mashed potatoes
Raw spinach
Ginger dressing
Homemade greek yogurt ice cream
Honey on her pancakes
Applesauce on peanut butter toast
At therapy she has eaten pistachios and almonds. She bit a carrot (and then spit it out). And both of those are HUGE.
Okay. You may not be properly impressed. But consider this. Elise does NOT eat new food without retching. She eats only combinations she recognizes. She would happily subsist on crackers and toast.
I am really excited that we will be able to pull off real meals MUCH sooner than I would have EVER expected. EVER!!
Thursday, October 20, 2011
31 for 21: #20 Disservice Announcement
Okay...I've been threatening to throw my peeps under the bus for a while...and while I have in passing, this is the first time I've dedicated a post to it.
My biggest pet peeve of parents of children with any special needs is the refusal to discipline. They fall prey to the doting on a sickly child or they blame the cognitive delays and don't parent.
I don't care if you chose spanking, time outs, the removal of privileges, the giving of consequences, etc. If you choose not to discourage naughty behavior or encourage proper behavior, you are doing your child a disservice. Typical or non.
One of my best friends has a younger brother with special needs. He is severely cognitively delayed. She also has a 2nd little brother who is neuro-typical, on the high end of intellegence, in fact.
The brother with delays was treated the same as my friend. He was given consequences. He was given rewards for good behavior. He was encouraged to be as independent as possible. He currently holds a full-time job with benefits. And has for years. He has friends and enjoys movies and has pursued a very impressive talent in wood-working.
Her other, neuro-typical, brother, was doted on for a multitude of reasons stemming, I suspect, from being a later in life baby...he has dodged virtually every consequence to every decision in his life. Their parents have enabled this. He is mid-twenties now, has no college degree, has never held a job, and continues make dreadful choices in successsion...
Also, interestingly, her brother with cognitive delays, dated a girl with a similar type of disability. Her parents have done everything for her for her entire life. She still cannot bathe herself. She has never held a job. They have made her 100% and completely dependent. And she could have been so very much more.
I cannot tell you how frustrating it is when you meet someone with disabilities who is a pill. Who is selfish and mean. Or who is handicapped by their own parents. It is like seeing people who squander money or talents...it becomes a tragedy.
It is these situations that influence the public's view of those with disabilities. The consequences of these parents' decisions is a loss of opportunities for others with disabilities.
So do everyone a favor. Push your kids to the most of their abilities. Do not let them get away with bullying others or being selfish. Expect their best. It is the biggest favor you can do for them and all those they will come into contact with. Now and in their future.
My biggest pet peeve of parents of children with any special needs is the refusal to discipline. They fall prey to the doting on a sickly child or they blame the cognitive delays and don't parent.
I don't care if you chose spanking, time outs, the removal of privileges, the giving of consequences, etc. If you choose not to discourage naughty behavior or encourage proper behavior, you are doing your child a disservice. Typical or non.
One of my best friends has a younger brother with special needs. He is severely cognitively delayed. She also has a 2nd little brother who is neuro-typical, on the high end of intellegence, in fact.
The brother with delays was treated the same as my friend. He was given consequences. He was given rewards for good behavior. He was encouraged to be as independent as possible. He currently holds a full-time job with benefits. And has for years. He has friends and enjoys movies and has pursued a very impressive talent in wood-working.
Her other, neuro-typical, brother, was doted on for a multitude of reasons stemming, I suspect, from being a later in life baby...he has dodged virtually every consequence to every decision in his life. Their parents have enabled this. He is mid-twenties now, has no college degree, has never held a job, and continues make dreadful choices in successsion...
Also, interestingly, her brother with cognitive delays, dated a girl with a similar type of disability. Her parents have done everything for her for her entire life. She still cannot bathe herself. She has never held a job. They have made her 100% and completely dependent. And she could have been so very much more.
I cannot tell you how frustrating it is when you meet someone with disabilities who is a pill. Who is selfish and mean. Or who is handicapped by their own parents. It is like seeing people who squander money or talents...it becomes a tragedy.
It is these situations that influence the public's view of those with disabilities. The consequences of these parents' decisions is a loss of opportunities for others with disabilities.
So do everyone a favor. Push your kids to the most of their abilities. Do not let them get away with bullying others or being selfish. Expect their best. It is the biggest favor you can do for them and all those they will come into contact with. Now and in their future.
Friday, May 20, 2011
Life and the Joys in the Darkness
I am pro-life. I have been ever since I understood what it really meant. And I am pro-life no matter what.
I think we under-sell life. I know that we live it with callousness, unless we are flayed open somehow to really take in its miracle.
Last night, two friends posted some thoughts on Facebook, in seemingly unrelated stories.
The first posted that "Walking in the woods makes me wonder if it were not for the pain in my life making a contrast, I may of never grown eyes to see the smallest bits of glory all around me." I responded in kind, " You can't appreciate light without the shadows...I've certainly found it to be true..." I'm sure I read something like that somewhere and I'd like to give credit, but I cannot find it.
Then a second dear friend posted a link with her heart full: "Sharing this is an attempt to remove some of the clutter from my brain. I saw this article today and it broke my heart on so many levels.
Four years ago we faced a similar situation. We knew our son could be born with heart defects, seizure disorders, low muscle tone, eating difficulties, hearing loss and/or other medical complications. We knew we could have an infant for life and yet we chose differently." And then she linked THIS ARTICLE.
I cried. And cried. And mulled and mulled. Last night after reading the above article, I remembered THIS ARTICLE and sat and thought about the choices and the final consequences. On one hand, even though the mother defends her choice, you can hear her heart breaking. Whereas in the Devinck article, he celebrates and treasures the memories of his brother.
I posted a similar thought awhile back...and since that time, the family I spoke of has had that baby girl...and she is, in fact, rocking the bonus chromosome. And you want to know what? She is adored, loved deeply, celebrated, and she is already touching their lives richly.
I have been faced with the dilemma of life or abortion, and I was able to make the right choice. I chose, backed not with "lofty ideals", but with a knowledge that God doesn't mess up, he blesses. I am not sitting in ugly judgement of those who have chosen abortion, but in sadness at the deep pain that stays with them.
Do I wish that Elise's life was easier? Yes. Do I wish that my life was easier? Yes. Would I trade in the life that we have lived for an easy one? No.
In having Elise, living with the Down Syndrome, the Cardiac Failure, the myriad surgeries, the cancer and chemo, the sensory "freakiness", the ADHD, the impulsiveness, the stress, the worry, the "complications"...I have gotten to see the joy, the blessings, the beauty, and the peace in life. I have gotten to see people reach beyond themselves to give. I have gotten to see the magnitude of miraculous answered prayer. I have seen God say no. I have gotten to appreciate His wisdom. I have gotten a glimpse at the "Much-ness" of God, Himself.
So, I believe that the idea of having kids that are not "perfect" actually
underscores the truth in the first quote. In the darkness of not "a perfectly healthy baby", I have seen the blinding brightness of His Light. I treasure the stars that sparkle in the darkness. I am thankful for life.
I think we under-sell life. I know that we live it with callousness, unless we are flayed open somehow to really take in its miracle.
Last night, two friends posted some thoughts on Facebook, in seemingly unrelated stories.
The first posted that "Walking in the woods makes me wonder if it were not for the pain in my life making a contrast, I may of never grown eyes to see the smallest bits of glory all around me." I responded in kind, " You can't appreciate light without the shadows...I've certainly found it to be true..." I'm sure I read something like that somewhere and I'd like to give credit, but I cannot find it.
Then a second dear friend posted a link with her heart full: "Sharing this is an attempt to remove some of the clutter from my brain. I saw this article today and it broke my heart on so many levels.
Four years ago we faced a similar situation. We knew our son could be born with heart defects, seizure disorders, low muscle tone, eating difficulties, hearing loss and/or other medical complications. We knew we could have an infant for life and yet we chose differently." And then she linked THIS ARTICLE.
I cried. And cried. And mulled and mulled. Last night after reading the above article, I remembered THIS ARTICLE and sat and thought about the choices and the final consequences. On one hand, even though the mother defends her choice, you can hear her heart breaking. Whereas in the Devinck article, he celebrates and treasures the memories of his brother.
I posted a similar thought awhile back...and since that time, the family I spoke of has had that baby girl...and she is, in fact, rocking the bonus chromosome. And you want to know what? She is adored, loved deeply, celebrated, and she is already touching their lives richly.
I have been faced with the dilemma of life or abortion, and I was able to make the right choice. I chose, backed not with "lofty ideals", but with a knowledge that God doesn't mess up, he blesses. I am not sitting in ugly judgement of those who have chosen abortion, but in sadness at the deep pain that stays with them.
Do I wish that Elise's life was easier? Yes. Do I wish that my life was easier? Yes. Would I trade in the life that we have lived for an easy one? No.
In having Elise, living with the Down Syndrome, the Cardiac Failure, the myriad surgeries, the cancer and chemo, the sensory "freakiness", the ADHD, the impulsiveness, the stress, the worry, the "complications"...I have gotten to see the joy, the blessings, the beauty, and the peace in life. I have gotten to see people reach beyond themselves to give. I have gotten to see the magnitude of miraculous answered prayer. I have seen God say no. I have gotten to appreciate His wisdom. I have gotten a glimpse at the "Much-ness" of God, Himself.
So, I believe that the idea of having kids that are not "perfect" actually
underscores the truth in the first quote. In the darkness of not "a perfectly healthy baby", I have seen the blinding brightness of His Light. I treasure the stars that sparkle in the darkness. I am thankful for life.
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