Today has been an especially challenging day for our littlest monster. Yesterday too actually. He has decided to start this obnoxious half whine, half cry noise that cuts right through to your soul. And he just stands there, at the arm of the chair, or your knee, or sits in your lap, or his high chair, and makes this noise. Con-stant-ly!!
It has been especially bad yesterday and today. I don't know why. He had been teething, but we've had some respite from that, and he behaves differently when he's teething. I don't know why he's making this noise, I can't figure it out. he will be happily playing with his toys, and then 30 seconds later, he's making this noise at your knees.
Well today was especially bad, there was no consoling him. So I stripped him to his diaper and tried brushing him. Brushing is touch and go with him, sometimes he likes it, and he calms down, and sometimes it only riles him up more. But I had to try something.... ANYTHING. well, for a few minutes, it worked, I had a happy baby, for a few minutes, and then we were back to the whiny/crying noise, and now, thrashing, and biting too. Oh no... he's melting down. Maybe he's in sensory overload... maybe he's not getting the input he needs, the brushing did work for a little bit after all.
Try the bath. Normally he HATES the bathtub, he only tolerates the water if we are holding him... or it's in the dog's water dish, no idea what the draw of that dish is.
but...
The bath worked. For 45 minutes I had a happy baby, he was laughing, and happy squeals, splashing, and playing in the water. he didn't even want bath toys, just the water. when the water started to cool, he decided he was done, he wanted out, and was going to get out no matter what, I almost couldn't catch him before he toppled over the edge and face first into the bath mat. Once he was wrapped in a towel, he was fussing again, but a game of peek a boo changed him back to my happy baby.
That is... until I tried to get a diaper on him.... then we were back to hell on earth. ok. fine. be naked. Crawl around the house without a diaper on. we have hardwood floors, if he messes somewhere it's easy to clean up.
But I can't let him be naked forever. he has to have a diaper on and his clothes. we live in the pacific northwest, we are coming up on winter, summer is gone. it's not warm enough to have a naked infant all the time.
but as soon as we put a diaper on him, we are back to that half whine half cry noise. nevermind clothes....
Sooo... now what???
Wednesday, September 28, 2011
Tuesday, September 27, 2011
Our Littlest Monster
When our little monster was born, we knew right away that something wasn't right. His fingers and toes looked different, and he didn't sleep as much as you would expect a newborn to sleep. I woudn't say he was any more alert, but he spent a great deal of time awake.
Just before he was born, we had hired a live in nanny to help with him, as I have said before I'm physically disabled and sometimes need help with a super dependent infant
As he has gotten older, he saw many different specialists, as we tried to find out what it was that made his hands and feet so unusual, and why he didn't sleep. we later found out it is a form of skeletal displaysia, called Brachydactyly.
At about 6 weeks old, we came home from work (yes, I did work at that time, and still do to an extent, but more from home now) and he was not behaving normally. We took him to the Emergency Room to find out he had a brain injury indicitive of shaken baby syndrome. At first they said that they couldn't outright say he had been shaken, but they couldn't say he hadn't either. That added a new complexity to our little man's life. It was later determined by the police, and CPS, and an infant neurologist that he had, in fact, been shaken. Charges were filed against the child care provider, and I decided to stay home on a nearly full time basis. After that incident we noticed that he started to have these spells that the doctors all thought were seizures, but after EEGs, it has been determined that they are not in fact seizures, but we don't know what they are. it's one of his quirks that we may never uncover the cause. He still has them, although with some medical intervention, not nearly as often as he used to. he has gone from 10 - 15 of these "spells" a day, down to 1 - 2 per week.
As he got older, and was growing much faster than expected physically, he was not progressing developmentally. Like, at all. we still had a newborn, he wasn't holding his own head up, he wasn't sitting, or babbling, he just flopped around and laid wherever he was placed. now don't get me wrong, this wasn't the, lie the baby down and walk away sort of situation. he would not tolerate being put down in any context. the instant he was no longer being held, he would be screaming. if he was asleep, he would abruptly wake up and we'd have that banshee scream that anyone that has a monster in their home must be familiar with. (although even those children that are a little less monster are typically also proficient at that scream) we couldn't lie him on his back. ever. for any reason. EVV..VVVVER. changing his diaper was, and is, absolute torture. No idea why. it's not painful. we've had him tested. he just doesn't tolerate it. on the rare occassion that we were able to lie him down while he slept, we could not put him on his back. even today, at 9 months old, he does not tolerate being on his back.
At 6 months old, his specialists at Children's hospital called in a referral to the developmental specialists to have him assessed. When they came out to see him, at 7 months, he still was not crawling, not even close, he was not rolling over, and would not tolerate being on his back. He was sitting, somewhat independently, but he would support his weight on his arms, and would not take long for him to fatigue and fall over. he was rated at 4 month equivalent in self help/cognitive and speech, and 5 month equvalent every where else.
Now that he has been recieving early intervention services, he is doing much better in the gross motor department, he crawls real well now, and is starting to pull up and cruise. he's left side dominant (maybe he'll be a southpaw like his momma) but the majority of his communication is screaming, and growling. on occassion we'll get something resembling a word, but there is no indication that he has any idea what that word means. I think he's just mimicing. He still does not tolerate having his clothes or diaper changed, and I'm just waiting for the day that we are going to have child protective services at our door one day because they think we are removing his toenails with pliers. He was also diagnosed as being low tone thanks to the help of his early intervention therapists, and we found out he has to work much harder than the average bear to support the weight of his own body. And due to that, he fatigues easily. He has also been diagnosed with a sensory processing disorder again with the assistance of his therapists, and apparantly that is real common in children with extremely low tone.
However, he has suddenly stopped growing. he has not gained an ounce, or gotten even an inch longer in over 3 months. Something new to investigate. Is he suddenly not producing the growth hormone? is it due to his feeding issues (which may result in a feeding tube)? is it due to his skeletal displaysia? or is it something totally benign, and he's going to randomly start growing at waay too fast of a rate all over again and nobody will know why? As of right now, he has been 27 1/4 inches long, and 18 pounds 2 ounces since he was 5 months and 3 weeks old.
He has meltdowns like you would expect of a 5 year old, and about as noisy. He screams, bites, pinces, scratches, arches his back and kicks. Sometimes pulls his own hair, and bites himself. Most of the time without any apparant reason. he will be playing with his toys, and suddenly just melt down. when we try to leave, he will throw his fits until we are through the front door, and then he seems to be fine, same with getting into or out of the car. He fights us so hard about the carseat, that we just leave it in the car, and carry him to and from. he will arch his back, hit, pinch and bite until he is buckled in, and the car is moving. As long as the car is moving, he's happy, playing with his toys in his carseat, and babbling to himself. as soon as the car stops, be it a red light, a stop sign, or pulling into our driveway, and we are back to the blood curdling banshee scream, arching his back, biting meltdowns, only when tied down in his carseat, that seems to only make things worse.
Don't let all of this make you think that he is just a difficult little monster 100% of the time and I regret having him. that is not the case, not by any sense of the imagination. I love my son to pieces and wouldn't trade him for the world. he does have his difficulties, but is generally a happy, playful loving little boy, that doesn't like strangers, loves his family, and his mommy and daddy, and his big sisters, and will hopefully soon get to meet his big brother. His GGs and Papas, and his grandmas and grandpas, aunts and uncles are all a large part of his world, and I don't know what I would do without them.
Just before he was born, we had hired a live in nanny to help with him, as I have said before I'm physically disabled and sometimes need help with a super dependent infant
As he has gotten older, he saw many different specialists, as we tried to find out what it was that made his hands and feet so unusual, and why he didn't sleep. we later found out it is a form of skeletal displaysia, called Brachydactyly.
At about 6 weeks old, we came home from work (yes, I did work at that time, and still do to an extent, but more from home now) and he was not behaving normally. We took him to the Emergency Room to find out he had a brain injury indicitive of shaken baby syndrome. At first they said that they couldn't outright say he had been shaken, but they couldn't say he hadn't either. That added a new complexity to our little man's life. It was later determined by the police, and CPS, and an infant neurologist that he had, in fact, been shaken. Charges were filed against the child care provider, and I decided to stay home on a nearly full time basis. After that incident we noticed that he started to have these spells that the doctors all thought were seizures, but after EEGs, it has been determined that they are not in fact seizures, but we don't know what they are. it's one of his quirks that we may never uncover the cause. He still has them, although with some medical intervention, not nearly as often as he used to. he has gone from 10 - 15 of these "spells" a day, down to 1 - 2 per week.
As he got older, and was growing much faster than expected physically, he was not progressing developmentally. Like, at all. we still had a newborn, he wasn't holding his own head up, he wasn't sitting, or babbling, he just flopped around and laid wherever he was placed. now don't get me wrong, this wasn't the, lie the baby down and walk away sort of situation. he would not tolerate being put down in any context. the instant he was no longer being held, he would be screaming. if he was asleep, he would abruptly wake up and we'd have that banshee scream that anyone that has a monster in their home must be familiar with. (although even those children that are a little less monster are typically also proficient at that scream) we couldn't lie him on his back. ever. for any reason. EVV..VVVVER. changing his diaper was, and is, absolute torture. No idea why. it's not painful. we've had him tested. he just doesn't tolerate it. on the rare occassion that we were able to lie him down while he slept, we could not put him on his back. even today, at 9 months old, he does not tolerate being on his back.
At 6 months old, his specialists at Children's hospital called in a referral to the developmental specialists to have him assessed. When they came out to see him, at 7 months, he still was not crawling, not even close, he was not rolling over, and would not tolerate being on his back. He was sitting, somewhat independently, but he would support his weight on his arms, and would not take long for him to fatigue and fall over. he was rated at 4 month equivalent in self help/cognitive and speech, and 5 month equvalent every where else.
Now that he has been recieving early intervention services, he is doing much better in the gross motor department, he crawls real well now, and is starting to pull up and cruise. he's left side dominant (maybe he'll be a southpaw like his momma) but the majority of his communication is screaming, and growling. on occassion we'll get something resembling a word, but there is no indication that he has any idea what that word means. I think he's just mimicing. He still does not tolerate having his clothes or diaper changed, and I'm just waiting for the day that we are going to have child protective services at our door one day because they think we are removing his toenails with pliers. He was also diagnosed as being low tone thanks to the help of his early intervention therapists, and we found out he has to work much harder than the average bear to support the weight of his own body. And due to that, he fatigues easily. He has also been diagnosed with a sensory processing disorder again with the assistance of his therapists, and apparantly that is real common in children with extremely low tone.
However, he has suddenly stopped growing. he has not gained an ounce, or gotten even an inch longer in over 3 months. Something new to investigate. Is he suddenly not producing the growth hormone? is it due to his feeding issues (which may result in a feeding tube)? is it due to his skeletal displaysia? or is it something totally benign, and he's going to randomly start growing at waay too fast of a rate all over again and nobody will know why? As of right now, he has been 27 1/4 inches long, and 18 pounds 2 ounces since he was 5 months and 3 weeks old.
He has meltdowns like you would expect of a 5 year old, and about as noisy. He screams, bites, pinces, scratches, arches his back and kicks. Sometimes pulls his own hair, and bites himself. Most of the time without any apparant reason. he will be playing with his toys, and suddenly just melt down. when we try to leave, he will throw his fits until we are through the front door, and then he seems to be fine, same with getting into or out of the car. He fights us so hard about the carseat, that we just leave it in the car, and carry him to and from. he will arch his back, hit, pinch and bite until he is buckled in, and the car is moving. As long as the car is moving, he's happy, playing with his toys in his carseat, and babbling to himself. as soon as the car stops, be it a red light, a stop sign, or pulling into our driveway, and we are back to the blood curdling banshee scream, arching his back, biting meltdowns, only when tied down in his carseat, that seems to only make things worse.
Don't let all of this make you think that he is just a difficult little monster 100% of the time and I regret having him. that is not the case, not by any sense of the imagination. I love my son to pieces and wouldn't trade him for the world. he does have his difficulties, but is generally a happy, playful loving little boy, that doesn't like strangers, loves his family, and his mommy and daddy, and his big sisters, and will hopefully soon get to meet his big brother. His GGs and Papas, and his grandmas and grandpas, aunts and uncles are all a large part of his world, and I don't know what I would do without them.
Meet My Monsters
I guess I'll start this with an introduction to my little family of monsters, and not-so-much monsters. I affectionately refer to my family as a family of monsters, because I'm sure that anyone watching from the outside, would describe us as exactly that. A family of Monsters; we might as well wear that title like a badge of honor :)
I am a Monster too, I'm the mother and I'm disabled. I'm high functioning autistic, and physically disabled as well. I'm abulatory, but I have good days and bad. We have a live in caretaker to help me, and to help me raise my children, it adds an interesting dynamic to our family.
My husband, is a not-so-much monster, but I guess we are all a little monster in our own little way. He works outside the home, pays the bills, and comes home to his family of monsters every night. I often wonder why he would want to put up with us and all of our monster-ness, but he says he wouldn't have it any other way :)
My oldest daughter is almost 7 years old, she's not-so-much monster as well, she is your typical 6 1/2 year old. which of course comes with a bit of monster-ness on it's own.
My second daughter is 4 years old. She's a little bit Monster. but not as much now as when she was a baby. She was born prematurely, and had a rather rough start, and had developmental delays due to prematurity, however with early intervention therapies she has caught up with her peers, and now you wouldn't know she was ever delayed.
My step son is 3 years old. I don't know much about him, as I have never met him, and he doesn't live with us. hopefully that will change soon, and we will get to meet that little person. I will probably blog about our adventures in that escapade as things go on. I don't know yet.
My husband and I have one child together(so far lol) and he is currently 9 months old. He is actually the motivation for this blog, and the primary reason for the affectionately used label of "monster". In some ways, he is your typical 9 month old boy, and in other ways, he is so much.... MONSTER. As with most monsters, they all have their individual challenges, and obstacles, but as a family of monsters, we are determined to overcome and at least try to present a face to the rest of the world that is a little less monster. This monster has been diagnosed as having a Sensory Processing Disorder (also known as SPD), a form of Skeletal Displaysia called Brachydactyly, that causes the small bones of his skeleton to not grow properly, leaving him slightly shorter in stature, with disproportionate hands, fingers, feet and toes. It may cause him to be bowlegged, or have issues with his arms bowing as he gets older, and possibly affect his ribs as well, but as of right now, he is not currently afflicted with that. He also has some pretty profound developmental delays, and his specialists and therapists are suspicious of Autism Spectrum Disorder. Also known as ASD. He is still too young to be tested or diagnosed, however, he has many of the behavioral markers.
I intend to use code for our family. as I don't yet know how much I can put on the internet without it coming back to bite us in the backside. and although names have been disguised, I do intend to keep the stories true to life.
I am a Monster too, I'm the mother and I'm disabled. I'm high functioning autistic, and physically disabled as well. I'm abulatory, but I have good days and bad. We have a live in caretaker to help me, and to help me raise my children, it adds an interesting dynamic to our family.
My husband, is a not-so-much monster, but I guess we are all a little monster in our own little way. He works outside the home, pays the bills, and comes home to his family of monsters every night. I often wonder why he would want to put up with us and all of our monster-ness, but he says he wouldn't have it any other way :)
My oldest daughter is almost 7 years old, she's not-so-much monster as well, she is your typical 6 1/2 year old. which of course comes with a bit of monster-ness on it's own.
My second daughter is 4 years old. She's a little bit Monster. but not as much now as when she was a baby. She was born prematurely, and had a rather rough start, and had developmental delays due to prematurity, however with early intervention therapies she has caught up with her peers, and now you wouldn't know she was ever delayed.
My step son is 3 years old. I don't know much about him, as I have never met him, and he doesn't live with us. hopefully that will change soon, and we will get to meet that little person. I will probably blog about our adventures in that escapade as things go on. I don't know yet.
My husband and I have one child together(so far lol) and he is currently 9 months old. He is actually the motivation for this blog, and the primary reason for the affectionately used label of "monster". In some ways, he is your typical 9 month old boy, and in other ways, he is so much.... MONSTER. As with most monsters, they all have their individual challenges, and obstacles, but as a family of monsters, we are determined to overcome and at least try to present a face to the rest of the world that is a little less monster. This monster has been diagnosed as having a Sensory Processing Disorder (also known as SPD), a form of Skeletal Displaysia called Brachydactyly, that causes the small bones of his skeleton to not grow properly, leaving him slightly shorter in stature, with disproportionate hands, fingers, feet and toes. It may cause him to be bowlegged, or have issues with his arms bowing as he gets older, and possibly affect his ribs as well, but as of right now, he is not currently afflicted with that. He also has some pretty profound developmental delays, and his specialists and therapists are suspicious of Autism Spectrum Disorder. Also known as ASD. He is still too young to be tested or diagnosed, however, he has many of the behavioral markers.
I intend to use code for our family. as I don't yet know how much I can put on the internet without it coming back to bite us in the backside. and although names have been disguised, I do intend to keep the stories true to life.
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