Scene: Interior of 2003 Pontiac Grand Am at rush hour. Mama C is driving, Reaghan and Nixon are buckled in the back.
R - "Mama...why are we going this way?"
C - "Because this is the way home."
R - "Why?"
C - "Well...it just is. This is where they built the road."
R - "Daddy goes another way. Why?"
C - "I don't know...I just like to take this way and he likes to take that way."
R - "Why?"
C - (sigh) "I'm not sure, Reaghan. There are lots of ways home."
R - "Why are there lots of ways?"
C - "Because they built alot of roads."
R - "Why?"
C - "They just did...can we stop with the questions?"
R - "Why?"
C - "Because mama is tired of the questions right now."
R - "Why is mama tired of the questions?"
C - (sigh)
Thursday, May 28, 2009
Saturday, May 09, 2009
Ritalin
Several times in the past year the subject of Medication for Nixon has come up. The specialists at the University of Michigan Multidisciplinary Clinic (MDC) suggested it when he tuned three. The neuropsychologist said although he personally favors behavioral psychology treatment to meds, that Ritalin would indeed help him. For a year we struggled with the decision - it is not an easy one to make. On one hand, you know that his quality of life and thus your family's would improve. His pediatrician had high hopes that on meds he will make better progress in speech and occupational therapy, as he would be able to focus and be more a part of the process. On the other hand, there have been no long term studies on the effects of Ritalin on children under the age of six. The side effects include nausea, headaches, and reducing growth progression. There is also a certain stigma attached with medicating your child. Plenty of people out there who are not immersed in the day to day struggle of a special needs child will tell you readily that giving psychotropic drugs to children is just plain wrong. That in doing so you as a parent have given up on your child. That you are lazy and just don't want to chase after an active young boy.
Honestly, I wish it were that easy. If our biggest problem was just keeping up with an active child I think our family would function entirely differently. But as it is, his disability is far more severe than just hyperactivity. His brain is unable to focus on anything for more than a second.
Imagine watching television when someone is changing the channel every ten seconds...do you think you would be able to learn anything about the characters in the shows? Would you learn anything on Discovery channel if you caught about two minutes of an hour long special? Imagine your frustration. After an hour of this wouldn't you want to tell the person with the remote to go to hell? After a few days of this would you want to punch them in the face? Would you want to scream at them and throw things at them? After a month would you lock yourself away and rock back and forth trying desperately to settle your spinning mind. Picture Clockwork Orange...would you go mad?
That is closest example I can come up with, but I'm sure it isn't even close.
In the past two months we have been seeing regression in Nixon. His speech is actually declining and his outbursts are getting more severe in nature. He also has started bolting again. We live one house away from a very busy street. Four lanes of 45 MPH traffic (and most people do closer to 55). The weekend before last Nixon took off toward Lilley, not even looking where he was going. He was laughing over his shoulder as Bill frantically took off from the garage screaming his name. Bill managed to catch him, barely. He was about two strides from the curb and still going full tilt. Bill grabbed him so quickly that he hurt his arm and Nixon immediately went into a tirade of screams and hitting, but we didn't care. I was desperately choking back tears standing shock still in the driveway. Bill is much faster than me...I would never had made it to him in time. Let that settle in for a moment.
That same weekend he lost it on Reaghan and pulled out a chunk of hair the size of a quarter. Watching her tears and his absolute lack of empathy was terrible for me - she is his twin and they are everything to each other, but he couldn't even grasp what he had done.
So...after that weekend we started talking about meds again. It was apparent that this was now a safety issue, along with a quality of life issue. It was time to talk to his pediatrician.
I took him in last Monday to see Dr. R. She was immediately sympathetic, patting my shoulder as I struggled not to cry as I related the terror of the Lilley incident. She agreed that the time had come, and was honest enough to say that we came farther than alot of parents in our situation. She was frank about the side effects, but also explained that the headaches and nausea generally subside after a week or two. The growth potential can be realised with doing a three months on one month off schedule with his medication, thereby giving his body time to catch up. She also explained that this may not be a forever thing. We are very proactive in dealing with his issues, and once his cognitive ability caught up with his age he very well may be able to control himself on his own. Time will tell.
Off I went to the pharmacy, feeling a bit better after talking to his pediatrician but still afraid of what we were doing. What if he had side effects? Strangely, I was a little afraid that it might not even work since this was our "last resort". The last ditch effort to keep our child safe.
He started Tuesday morning. I was so nervous that I called his learning center half way through the day. "He's fine." his teacher said. "He's having a good day."
When I picked him up I was watching him like a hawk. Over analyzing his every move. He was so calm and happy! When we got home I was amazed at how much he was talking to me, answering questions without me having to make physical contact (our previous way of communicating with him). He was so relaxed and easygoing. I was scared to death that I was reading more into it, but I had tears stinging my eyes several times when he would make eye contact with me to converse.
That night he sat next to me on the couch quietly picking out books to order from the Scholastic catalog. (!!)
We are on day five, and the turn around has been pretty amazing. I still find myself tensing up in situations that normally would put him over the edge, but he handles them on his own. I'm not saying that he doesn't throw the occasional tantrum...he is four, but the violent outbursts are for the most part gone.
I now am dealing with a little guilt. Did we damage him by waiting too long? Would he have caught up more if we had started a year ago when we were advised to by the child psychologist at U of M? How much have we missed? Would he be talking normally now?
There are no answers to these questions, and there never will be. I can only hope that now he will get his feet on the path and stay on it, instead of running circles in the fields.
And by the way...he doesn't seem to have the side effects.
Honestly, I wish it were that easy. If our biggest problem was just keeping up with an active child I think our family would function entirely differently. But as it is, his disability is far more severe than just hyperactivity. His brain is unable to focus on anything for more than a second.
Imagine watching television when someone is changing the channel every ten seconds...do you think you would be able to learn anything about the characters in the shows? Would you learn anything on Discovery channel if you caught about two minutes of an hour long special? Imagine your frustration. After an hour of this wouldn't you want to tell the person with the remote to go to hell? After a few days of this would you want to punch them in the face? Would you want to scream at them and throw things at them? After a month would you lock yourself away and rock back and forth trying desperately to settle your spinning mind. Picture Clockwork Orange...would you go mad?
That is closest example I can come up with, but I'm sure it isn't even close.
In the past two months we have been seeing regression in Nixon. His speech is actually declining and his outbursts are getting more severe in nature. He also has started bolting again. We live one house away from a very busy street. Four lanes of 45 MPH traffic (and most people do closer to 55). The weekend before last Nixon took off toward Lilley, not even looking where he was going. He was laughing over his shoulder as Bill frantically took off from the garage screaming his name. Bill managed to catch him, barely. He was about two strides from the curb and still going full tilt. Bill grabbed him so quickly that he hurt his arm and Nixon immediately went into a tirade of screams and hitting, but we didn't care. I was desperately choking back tears standing shock still in the driveway. Bill is much faster than me...I would never had made it to him in time. Let that settle in for a moment.
That same weekend he lost it on Reaghan and pulled out a chunk of hair the size of a quarter. Watching her tears and his absolute lack of empathy was terrible for me - she is his twin and they are everything to each other, but he couldn't even grasp what he had done.
So...after that weekend we started talking about meds again. It was apparent that this was now a safety issue, along with a quality of life issue. It was time to talk to his pediatrician.
I took him in last Monday to see Dr. R. She was immediately sympathetic, patting my shoulder as I struggled not to cry as I related the terror of the Lilley incident. She agreed that the time had come, and was honest enough to say that we came farther than alot of parents in our situation. She was frank about the side effects, but also explained that the headaches and nausea generally subside after a week or two. The growth potential can be realised with doing a three months on one month off schedule with his medication, thereby giving his body time to catch up. She also explained that this may not be a forever thing. We are very proactive in dealing with his issues, and once his cognitive ability caught up with his age he very well may be able to control himself on his own. Time will tell.
Off I went to the pharmacy, feeling a bit better after talking to his pediatrician but still afraid of what we were doing. What if he had side effects? Strangely, I was a little afraid that it might not even work since this was our "last resort". The last ditch effort to keep our child safe.
He started Tuesday morning. I was so nervous that I called his learning center half way through the day. "He's fine." his teacher said. "He's having a good day."
When I picked him up I was watching him like a hawk. Over analyzing his every move. He was so calm and happy! When we got home I was amazed at how much he was talking to me, answering questions without me having to make physical contact (our previous way of communicating with him). He was so relaxed and easygoing. I was scared to death that I was reading more into it, but I had tears stinging my eyes several times when he would make eye contact with me to converse.
That night he sat next to me on the couch quietly picking out books to order from the Scholastic catalog. (!!)
We are on day five, and the turn around has been pretty amazing. I still find myself tensing up in situations that normally would put him over the edge, but he handles them on his own. I'm not saying that he doesn't throw the occasional tantrum...he is four, but the violent outbursts are for the most part gone.
I now am dealing with a little guilt. Did we damage him by waiting too long? Would he have caught up more if we had started a year ago when we were advised to by the child psychologist at U of M? How much have we missed? Would he be talking normally now?
There are no answers to these questions, and there never will be. I can only hope that now he will get his feet on the path and stay on it, instead of running circles in the fields.
And by the way...he doesn't seem to have the side effects.
Thursday, March 12, 2009
Notes on Nixon
Alot of you were wondering about the results of Nixon's Neuropsych testing last week. We had some good news and some bad news:
The Good:
- With all of the therapy that he has been getting in special ed, he tested much better on his social awareness and sensitivities. The Neuropsychologist believes that we are out of the woods on the autism diagnosis (whew...big whew).
- Although his "normal" IQ testing was below normal, they decided to test him with a different test. The test they used was for children who are non-verbal, and the whole test is given without verbal instructions or the need for verbal responces to the test. Nixon scored above average IQ based on the non-verbal testing.
The Bad
- The testing showed that Nixon is functioning at an age of 2 years, 4 months. This puts him delayed by 1.5 years.
- Although we had thought that he was doing so much better verbally, but the doc told us that as he is approaching four the curve is getting steeper. Although he know talks a little bit, his vocab and verbal abilities are still around an 18 month to two year old. That was a big disappointment for me since I had felt that we had made alot of progress.
- Fine motor skills are a major concern. He is unable to correctly hold a crayon, and is unable to make a line. Very big concern.
- The potential diagnosis we are now looking at is combined ADD and ADHD with Developmental Delay and a Speech Delay. I'm still wrestling with if this really is any better than the mild autism diagnosis that they had warned us about a year ago. Even though autism is so serious, mildly autistic sounds so much better to me than all the other ones combined. Maybe its just because it is more words, and maybe its because we are somewhat opposed to medication and that seems to be the route for the ADD/ADHD disorder. Our opinion may change as he gets into his school years, but we have decided not to medicate at this time.
The Ugly: We are waiting on the tests that were sent to special ed and his learning center. Once those are in the Doc will write his report. Once we get the report we need to call another IEP with the school district to change his IEP goals. Doc has strongly suggested outside Speech therapy and Occupational therapy on top of what he is getting through special ed, so we need to start looking for providers. Doc also strongly recommended getting a Child Behavioral Psychologist on board. Once we get all the players we need to schedule a meeting with the school, the psychologist, and the Neuropsychologist to develop a combined school/home plan. This sounds very overwhelming, so I am glad to have the time to wait for the report from neuropsych before I have to get started.
Well...thats the news. If anyone knows a really great speech therapist in the Plymouth Canton area who takes U of M insurance - let me know!!!
The Good:
- With all of the therapy that he has been getting in special ed, he tested much better on his social awareness and sensitivities. The Neuropsychologist believes that we are out of the woods on the autism diagnosis (whew...big whew).
- Although his "normal" IQ testing was below normal, they decided to test him with a different test. The test they used was for children who are non-verbal, and the whole test is given without verbal instructions or the need for verbal responces to the test. Nixon scored above average IQ based on the non-verbal testing.
The Bad
- The testing showed that Nixon is functioning at an age of 2 years, 4 months. This puts him delayed by 1.5 years.
- Although we had thought that he was doing so much better verbally, but the doc told us that as he is approaching four the curve is getting steeper. Although he know talks a little bit, his vocab and verbal abilities are still around an 18 month to two year old. That was a big disappointment for me since I had felt that we had made alot of progress.
- Fine motor skills are a major concern. He is unable to correctly hold a crayon, and is unable to make a line. Very big concern.
- The potential diagnosis we are now looking at is combined ADD and ADHD with Developmental Delay and a Speech Delay. I'm still wrestling with if this really is any better than the mild autism diagnosis that they had warned us about a year ago. Even though autism is so serious, mildly autistic sounds so much better to me than all the other ones combined. Maybe its just because it is more words, and maybe its because we are somewhat opposed to medication and that seems to be the route for the ADD/ADHD disorder. Our opinion may change as he gets into his school years, but we have decided not to medicate at this time.
The Ugly: We are waiting on the tests that were sent to special ed and his learning center. Once those are in the Doc will write his report. Once we get the report we need to call another IEP with the school district to change his IEP goals. Doc has strongly suggested outside Speech therapy and Occupational therapy on top of what he is getting through special ed, so we need to start looking for providers. Doc also strongly recommended getting a Child Behavioral Psychologist on board. Once we get all the players we need to schedule a meeting with the school, the psychologist, and the Neuropsychologist to develop a combined school/home plan. This sounds very overwhelming, so I am glad to have the time to wait for the report from neuropsych before I have to get started.
Well...thats the news. If anyone knows a really great speech therapist in the Plymouth Canton area who takes U of M insurance - let me know!!!
Wednesday, January 28, 2009
Signal Strength is Excellent
The connection between a mother and her child is mystical. As I lay next to my sick daughter listening to the coughs racking her body, I begin to feel as if I can cough for her. I feel my chest tighten, and I cough with a strange sensation that doing so helps her respire. I clear my own throat to the sounds of the rattle in hers. I can't help it...I can't not do it. It has been predetermined in my genetic code to act this way. I am a mother.
At times the connection feels physical. A ghoast umbilicus. A tug in the center of my abdomen; somewhere very deep.
In times past, when Nixon was having breathing difficulties, I would feel my own respirations become shallow. I would wheeze along with him, both of us sitting up at 2:00 am wheezing away like a couple of old accordians.
It is 4:18. Normally I would be rising for work soon, but not today. The alarm has been turned off. My sick daughter lies next to me, the syrup and the Vicks have begun their duty and the time between her coughs extends. Her breaths regulate and she drifts off to sleep.
I lay awake wondering if when she is older if I will still feel the tug. When she calls home from university with a frog in her throat, will I still clear mine? If she coughs from accross the world will I have ghoast coughs? Does the signal strength fade with distance...with time?
I close my eyes. I decide to sleep, knowing that at least for now the signal strength is excellant.
At times the connection feels physical. A ghoast umbilicus. A tug in the center of my abdomen; somewhere very deep.
In times past, when Nixon was having breathing difficulties, I would feel my own respirations become shallow. I would wheeze along with him, both of us sitting up at 2:00 am wheezing away like a couple of old accordians.
It is 4:18. Normally I would be rising for work soon, but not today. The alarm has been turned off. My sick daughter lies next to me, the syrup and the Vicks have begun their duty and the time between her coughs extends. Her breaths regulate and she drifts off to sleep.
I lay awake wondering if when she is older if I will still feel the tug. When she calls home from university with a frog in her throat, will I still clear mine? If she coughs from accross the world will I have ghoast coughs? Does the signal strength fade with distance...with time?
I close my eyes. I decide to sleep, knowing that at least for now the signal strength is excellant.
Thursday, January 22, 2009
The Dark Side
Before I post about our fabulous Disney Cruise, there has been something weighing on me that I need to get out there to feel better about.
When you have a child with a developmental disability, there are alot of things going on internally with that child that are not apparent on the outside. To the average viewer (person), he appears to be a normal almost four year old. His behavior and cognitive understanding of what is acceptable, unfortunately, is closer to that of a two and a half year old. You can not SEE this difference, but it is there.
As a parent, you have to make the choice to bring that child into situations where you know there will be a problem with their ability to function "normally" in that environment. Even though you know (and have been told by clinicians) that forcing this child into environments outside of their norm is good for them, you also know that doing so will be exhausting both mentally and physically to you as a parent. It also can be frustrating to those around you who may not know or understand all of what is going on "behind the scenes".
We have been in many situations where Nixon is having a hard time. He is very quickly overstimulated, and outside of his comfort zone this will sometimes manifest itself in violent behavior to those around around him as well as himself. He will hit, spit, bang his head, kick, or throw things. He has a very difficult time controlling these outbursts. To the outsider, he looks like a naughty boy and we look like bad parents. To us, he looks like a child in pain internally. He is acting out because he is past his comfort zone.
The dark side of this is when these things happen, and you get the comments and dirty looks from people, your first reaction feels like you need to explain him. Tell the people that he is "special" and all those words. I don't do that. I would prefer they think I am the one with the problem. That Nixon acts like a monster because its a parenting problem. Sometimes I wonder if I do this out of wishful thinking. Disciplinary problems can be solved after all.
The other aspect of this dark side is that sometimes you pass on experiences with your child because you simply do not have it in you to handle it that day. You are simply too tired, or too hurt from the last time.
The cruise was a wonderful, valuable, and educational experience. We learned alot about what his capabilities are when he is totally removed from his comfort zone. We also learned alot of our ability as far as making it easier on him. I think we pushed him too far a few times, and his actions caused me to loose my temper and hurt the feelings of some around me. For this I am regretful. Do I regret the trip? No Way. Will we continue to urge Nixon outside of his comfort zone? Definitely. Will it always be pretty? No, but life never is.
When you have a child with a developmental disability, there are alot of things going on internally with that child that are not apparent on the outside. To the average viewer (person), he appears to be a normal almost four year old. His behavior and cognitive understanding of what is acceptable, unfortunately, is closer to that of a two and a half year old. You can not SEE this difference, but it is there.
As a parent, you have to make the choice to bring that child into situations where you know there will be a problem with their ability to function "normally" in that environment. Even though you know (and have been told by clinicians) that forcing this child into environments outside of their norm is good for them, you also know that doing so will be exhausting both mentally and physically to you as a parent. It also can be frustrating to those around you who may not know or understand all of what is going on "behind the scenes".
We have been in many situations where Nixon is having a hard time. He is very quickly overstimulated, and outside of his comfort zone this will sometimes manifest itself in violent behavior to those around around him as well as himself. He will hit, spit, bang his head, kick, or throw things. He has a very difficult time controlling these outbursts. To the outsider, he looks like a naughty boy and we look like bad parents. To us, he looks like a child in pain internally. He is acting out because he is past his comfort zone.
The dark side of this is when these things happen, and you get the comments and dirty looks from people, your first reaction feels like you need to explain him. Tell the people that he is "special" and all those words. I don't do that. I would prefer they think I am the one with the problem. That Nixon acts like a monster because its a parenting problem. Sometimes I wonder if I do this out of wishful thinking. Disciplinary problems can be solved after all.
The other aspect of this dark side is that sometimes you pass on experiences with your child because you simply do not have it in you to handle it that day. You are simply too tired, or too hurt from the last time.
The cruise was a wonderful, valuable, and educational experience. We learned alot about what his capabilities are when he is totally removed from his comfort zone. We also learned alot of our ability as far as making it easier on him. I think we pushed him too far a few times, and his actions caused me to loose my temper and hurt the feelings of some around me. For this I am regretful. Do I regret the trip? No Way. Will we continue to urge Nixon outside of his comfort zone? Definitely. Will it always be pretty? No, but life never is.
Monday, January 19, 2009
Thursday, January 01, 2009
Saturday, November 29, 2008
The Powers of Electricity
The other day I got a great surprise when I picked the kids up from their learning center. As I was helping Reaghan pack up her art stuff into her backpack, I noticed something in the botton of the pack. I wasn't sure what it was, so I pulled it out.
It was a pair of my underwear.
Reaghan started giggling, "Mamma's underpants were in my nap stuff."
I gathered that due to the wonderful powers of static cling, my panties had traveled to school attached to Reaghan's naptime blanket.
"So, " I asked, "did your teacher see mommie's underpants?"
"YES!" Reaghan screamed, doubled over laughing. "everyone saw Mommie's underpants!"
Great. Just great.
It was a pair of my underwear.
Reaghan started giggling, "Mamma's underpants were in my nap stuff."
I gathered that due to the wonderful powers of static cling, my panties had traveled to school attached to Reaghan's naptime blanket.
"So, " I asked, "did your teacher see mommie's underpants?"
"YES!" Reaghan screamed, doubled over laughing. "everyone saw Mommie's underpants!"
Great. Just great.
Tuesday, November 11, 2008
Tagged...
I've been tagged by Melissa at Twincredible Twosome to come up with eight things that you might not know about me.
Here goes!
Here goes!
- I read at a freakishly fast rate. It is really quite alarming how fast I can suck books down. I just finished re-reading the whole Harry Potter series (all seven of them) in about five weeks. Remember, I work full time and I insist on a minimum of seven hours of shut eye a night!
- I once had seven piercings in my body...a total of two were in my ears.
- I have two tattoos, and for a while I had bigger tats than my husband (he has since shown me up...to the needle I go!)
- Years ago I was a Go Go dancer at one of the hottest clubs in Grand Rapids (The Reptile House). I was much thinner then (the pics are outrageous!).
- I am absolutely enthralled with the science of the body and will sometimes re-read my schoolbooks for fun.
- I was a total nerd while I was growing up. Not in the super cool "nerd rock" way that is popular now, but in the weird shy girl in the corner with the frizzy hair and glasses whose nose is always buried in a book kinda way. I had NO friends...none. I think I didn't talk at all in a whole school day, unless it was to answer every single question the teacher asked...no wonder I didn't have friends!!
- I avoid shaving my legs like the plague. I will wear pants in ninety degree weather just to not do it. I just hate doing it. (Don't worry...I do it when necessary!!)
- My children are NOT named after the presidents.
Thats it!
Sunday, November 02, 2008
Halloween!
What a perfect Halloween! The weather cooperated and the kids had an absolute blast! The double dink family headed over to the White family abode for pizza and fun pre-trick or treating. The picture shows Nixon (who refused a costume), Reaghan (Cinderella), Adam (Monkey 1), and Drew (Monkey 2).
This was Nixon and Reaghans first Trick or Treat experiance, so it was lucky that they went with old pros like Adam and Drew. As soon as they followed them to the first house and got their first candy, they were convinced that this is the most awesome activity on the face of the earth and had no problem running from house to house while the parents stood at the curb.
All the mommies and daddies had a blast as well! Nothing like a little wine with your junk food!
Friday, October 31, 2008
Sunday, August 24, 2008
I Guess I Took Summer Off Too...
Wow...it's late August...I havn't blogged since spring.
I feel a bit sheepish...like I forgot to do my homework assignment and I am hoping that the teacher doesn't decide to collect it today.
As the kids get older the "work" of caring for them gets easier, but your time compresses. Suddenly 24 hours is no where near enough time to fit everything in. I rise at 4:30 to get to work by 6:00, get out at 2:30 (hopefully) and dash off to fit in as many errands or as much housework as possible before I pick the kids up from their learning center at 5:00. Between dinner, playtime, bathtime, etc 7:30 comes all to quickly and we are getting the kids into beds (or still a crib in Nixon's case...we are crossing our fingers to be out of it by Christmas) and lights out by 8:00. Muma gets a precious hour to read/watch Project Runway/talk to daddy before I have to start getting ready to go to bed and do it all over the next day. Whew! I'm exhausted just reading this!
As an update, Nixon's speech and social skills have improved greatly thanks to the excellant therapy through our local school district. He attended a summer session, and will be starting preschool through their developmentally delayed program this fall. He will attend three half day sessions a week, and we are so excited to see how much more ground we can cover with so much more time with therapists. He still can not speak well, and it is very difficult to understand him, but he wants to communicate - which is great! His favorite thing to do lately is tell us his routine:
Said at bedtime
"Bubbie go nite nite. Bubbie wake up. Bubbie have waffle. Bubbie Ya Ya go school. Muma get Bubbie Ya Ya. Bubbie go home. Bubbie eat. Bubbie play. Bubbie go nite nite."
On the weekends, we tend to do the same things and eat at the same places, but it helps with his behavior. We find that new environments are often too much for him and he acts up. Much easier to go where he is comfortable. On the question of wether he is autistic or not, all of the specialists that he has seen do say he is on the spectrum, but Bill and I are convinced that he can pull out of that diagnosis. His sensitvity problems have been getting better (can you believe he will eat a popsicle now...can you believe I cried when he did!) and with the fall program coming we have high hopes.
As far as our vacation, both the kids did excellant for their first time away from home . They LOVED the water - spent all day swimming, catching minnows, or finding seashells. They were so pooped out by bedtime each night that we had no problem getting them to sleep. We were very worried about this aspect, because Nix does not sleep well out of his crib, but the sun and water did their job and he was down for the count by 8:00 each night.
Reaghan is still solidly in the princess stage. I don't see that ending any time soon. My mom and I took her shopping recently, and she is showing signs of being a professional shopper by the age of five. The girls loves to shop. She was mad at us when we had to leave after a few hours because my mom and I were whipped - she could've shopped all day. Rea still wants to wear mostly pink, but we will work on that. I still can't believe that I had such a girly girl! I don't think I ever wore pink in my life! At her age I was ripping through the neighborhood in a dingy pair of overalls, no shirt, with twigs in my hair trying desperately to keep up with the older boys who were my playmates. All she wants to do is dress up in princess dresses and twirl around the kitchen with the radio on. Thankfully, Nixon will act as "prince" and dance with her sometimes, otherwise I am playing "prince" every evening. Cute for a few months, but after almost a year it gets old...real old.
As for me, I had quite a spill about six weeks ago. I was cut off and ended up laying a motorcycle down for the first (and hopefully last) time. I was only doing about 20 mph, so the damage was minimal but I still ended up in the ER with a seperated shoulder and a whole lot of road rash. It is weird for me to go to another health system other than the one I work for...I find myself being so highly critical of my care and I left convinced that the system I went to didn't provide the level of care that I am used to. Anyway...my shoulder still hurts like crazy, but its getting better and I am determined to get back on the "horse" as soon as it heals.
I feel a bit sheepish...like I forgot to do my homework assignment and I am hoping that the teacher doesn't decide to collect it today.
As the kids get older the "work" of caring for them gets easier, but your time compresses. Suddenly 24 hours is no where near enough time to fit everything in. I rise at 4:30 to get to work by 6:00, get out at 2:30 (hopefully) and dash off to fit in as many errands or as much housework as possible before I pick the kids up from their learning center at 5:00. Between dinner, playtime, bathtime, etc 7:30 comes all to quickly and we are getting the kids into beds (or still a crib in Nixon's case...we are crossing our fingers to be out of it by Christmas) and lights out by 8:00. Muma gets a precious hour to read/watch Project Runway/talk to daddy before I have to start getting ready to go to bed and do it all over the next day. Whew! I'm exhausted just reading this!
As an update, Nixon's speech and social skills have improved greatly thanks to the excellant therapy through our local school district. He attended a summer session, and will be starting preschool through their developmentally delayed program this fall. He will attend three half day sessions a week, and we are so excited to see how much more ground we can cover with so much more time with therapists. He still can not speak well, and it is very difficult to understand him, but he wants to communicate - which is great! His favorite thing to do lately is tell us his routine:
Said at bedtime
"Bubbie go nite nite. Bubbie wake up. Bubbie have waffle. Bubbie Ya Ya go school. Muma get Bubbie Ya Ya. Bubbie go home. Bubbie eat. Bubbie play. Bubbie go nite nite."
On the weekends, we tend to do the same things and eat at the same places, but it helps with his behavior. We find that new environments are often too much for him and he acts up. Much easier to go where he is comfortable. On the question of wether he is autistic or not, all of the specialists that he has seen do say he is on the spectrum, but Bill and I are convinced that he can pull out of that diagnosis. His sensitvity problems have been getting better (can you believe he will eat a popsicle now...can you believe I cried when he did!) and with the fall program coming we have high hopes.As far as our vacation, both the kids did excellant for their first time away from home . They LOVED the water - spent all day swimming, catching minnows, or finding seashells. They were so pooped out by bedtime each night that we had no problem getting them to sleep. We were very worried about this aspect, because Nix does not sleep well out of his crib, but the sun and water did their job and he was down for the count by 8:00 each night.
Reaghan is still solidly in the princess stage. I don't see that ending any time soon. My mom and I took her shopping recently, and she is showing signs of being a professional shopper by the age of five. The girls loves to shop. She was mad at us when we had to leave after a few hours because my mom and I were whipped - she could've shopped all day. Rea still wants to wear mostly pink, but we will work on that. I still can't believe that I had such a girly girl! I don't think I ever wore pink in my life! At her age I was ripping through the neighborhood in a dingy pair of overalls, no shirt, with twigs in my hair trying desperately to keep up with the older boys who were my playmates. All she wants to do is dress up in princess dresses and twirl around the kitchen with the radio on. Thankfully, Nixon will act as "prince" and dance with her sometimes, otherwise I am playing "prince" every evening. Cute for a few months, but after almost a year it gets old...real old.
As for me, I had quite a spill about six weeks ago. I was cut off and ended up laying a motorcycle down for the first (and hopefully last) time. I was only doing about 20 mph, so the damage was minimal but I still ended up in the ER with a seperated shoulder and a whole lot of road rash. It is weird for me to go to another health system other than the one I work for...I find myself being so highly critical of my care and I left convinced that the system I went to didn't provide the level of care that I am used to. Anyway...my shoulder still hurts like crazy, but its getting better and I am determined to get back on the "horse" as soon as it heals.
Thursday, August 14, 2008
Vacation 2008 - Devil's Lake
We took our first "real" vacation with the kids this week. We rented a cottage from a friend on Devil's Lake in the Irish Hills.
Monday, March 24, 2008
Eggy Fun
Hmmm...Do I wanna touch the egg?
Eeww...I touched it!
All eggs must be pink by royal proclamation
Friday, March 14, 2008
Just Gotta Let It Go
A few weeks ago we took Nixon to be assessed for a speech delay at the local school district. The interview started off fine enough, with a Rn asking me health history questions. Shortly we were joined by an occupational therapist and a social worker. Nixon was doing his own thing, like he usually does, while I (crammed into a toddler sized chair at a toddler sized table) answered all sorts of questions. The OT and the SW observed Nixon while I finished answering the questions.
"Does he generally not notice people in his surroundings?" one of them asked.
"Oh, he just likes to do his own thing." I responded.
Suddenly the questions started to change focus. I was asked about eye contact, if he plays with toys, if he ever spins, if he ever flaps his hands, does he obsess over a certain object, does he have sensitivity issues?
"Doesn't every toddler?" I asked. I was getting nervous. No one was asking me about speech anymore.
"Does he show emotion...will he spontaneously hug and kiss?"
"Well...he generally doesn't like to be touchy-feely, and he absolutely refuses to kiss - but I can usually get a hug out of him."
"Does he have any problems with sensory issues...cold things, wet things?"
"He does not like anything on his hands...and he refuses to eat anything that is cold, or wet, or sticky. If his clotes get wet, even a tiny bit, he wants them changed. Unless its drool...then he doesn't seem to mind."
"Does he still mouth objects?" We all turn around to see what he is doing. He is playing with some plastic blocks...he has one in his mouth.
"Yes, he still does."
"How old is he again?" one of the three ask.
"Almost three" someone answers.
"Does he eat with a fork or spoon?"
"Well yes...kinda, sometimes. He's still a stuffer, so he will attempt it for a minute then resort to stuffing his face." I laughed nervously "Alot of toddlers do that though, right?"
"I notice he isn't using his finger on his right hand...he keeps it extended."
"Oh, yes...thats THE finger. It's his favorite. He likes to keep it ready for use." I laugh again "He sucks it."
At this point, alot of whispering back and forth between the Rn and the social worker starts. I catch the words "ON THE SPECTRUM" and "AUTISTIC".
I have capitalized these words, because thats how they felt as I heard them.
The occupational therapist decides to try a few things with him.
"Will he sit in a chair?" she asks.
"Um...maybe." I say. "Nix, come here a second." He ignores me because he has found a barn full of animals. He is taking them out and lining them up. "Bubbie...come to mama." He is not responding. I get up and go to get him. He freaks out and starts screaming and hitting me. I try to get him into the cube chair that they have provided me for him. It is impossible. He has become a screaming tornado of arms and legs. One of the ladies tries to help me and he spazzes even more. We give up and let him go. He runs to a corner of the room and yells at us in his strange "bubbie talk" while wagging his finger towards us.
The questions resume. At this point I am near tears.
"We think that he may be on the Autistic Spectrum." one finally says. "Maybe Aspergers, but probably PDD-NOS. Either way, we believe that he is higher funtioning." She smiles at me. After my brain recovers I respond meekly with "But he smiles...he makes eye contact."
"The spectrum is wide and there are varying degrees of symptoms. He does smile and makes eye contact, but he is generally un interested in any of the people in this room right now."
"Well, we always knew he was different." I stammer...the tears are starting to come out.
Since that day we have had a roller coaster ride of appointments, theories, tests, and way too much googling. We have gone from totally despondant to feeling that everyting will be fine to a kind of limbo where we have accepted that it is what it will be.
I guess the hardest part has been realizing that he is the same little man that he was before all of this...that the label is meaningless.
One thing that I have learned through all of this is that nothing happens quickly when you are trying to get help for a child who may fit into this spectrum. We are currently in que for a mariad of services...none of which will happen anytime in the next two months. It is a 3-4 month wait for evaluation through U of M - even though I work there. It is even longer through PC public schools. You can be the best advocate that you can - you can make the calls, leave the messages, and wait for the call backs, but the answer is always the same...there is a wait. It will be a while. There are so many ahead of you. The feeling of total helplessness is hard to battle.
In the end, I really believe that Nix will be OK. I think he always be a bit "different", but arent we all? So what if he wont touch cold things...is that so bad? If he really doesn't care if he socializes with every person he comes into contact with why should I? He loves the people who are important, and the small things that he does to show it are worth a million empty gestures that we all display every day.
We are lucky...that I know from starting our group therapy through the PC schools. Some of the kids in his group are so locked away...their minds just not connecting with ours. I have witnessed the extremes of "The Spectrum" first hand and I know that we are no where near the extremes of the disease. Nixon is the tip of the iceberg.
We (I) have been fortunate to have the support of a fantastic family who have been through alot of their own sorrows with their children. Our good friends (I wil call them the "W"s) have not only been there for emotional support, but have also watched Reaghan while we have had to take Nixon to his child psychologist. Ms. W has also come over to watch the kids and put them to bed while Bill and I attend a parenting class with parents of other special needs childern. The W's are fantastic people who I feel have a firm grasp on what is truelly important in life...family and friends (to them the two are the same). They are good friends of ours and I am completely humbled by the amount of support we have received..to them we will be eternally gratefull.
In the end, we are the same. This has become very important to me. Nothing has really changed, as much as our perception of our reality has changed. We will continue to be the same family, the only change being that our new understanding of his behavior allows us to be better parents. We will do everyting possible. We will be advocates. We will also not become "the parents of that autistic kid". Like E from the Eels said "You just gotta let it go". Life goes on, and so will we.
"Does he generally not notice people in his surroundings?" one of them asked.
"Oh, he just likes to do his own thing." I responded.
Suddenly the questions started to change focus. I was asked about eye contact, if he plays with toys, if he ever spins, if he ever flaps his hands, does he obsess over a certain object, does he have sensitivity issues?
"Doesn't every toddler?" I asked. I was getting nervous. No one was asking me about speech anymore.
"Does he show emotion...will he spontaneously hug and kiss?"
"Well...he generally doesn't like to be touchy-feely, and he absolutely refuses to kiss - but I can usually get a hug out of him."
"Does he have any problems with sensory issues...cold things, wet things?"
"He does not like anything on his hands...and he refuses to eat anything that is cold, or wet, or sticky. If his clotes get wet, even a tiny bit, he wants them changed. Unless its drool...then he doesn't seem to mind."
"Does he still mouth objects?" We all turn around to see what he is doing. He is playing with some plastic blocks...he has one in his mouth.
"Yes, he still does."
"How old is he again?" one of the three ask.
"Almost three" someone answers.
"Does he eat with a fork or spoon?"
"Well yes...kinda, sometimes. He's still a stuffer, so he will attempt it for a minute then resort to stuffing his face." I laughed nervously "Alot of toddlers do that though, right?"
"I notice he isn't using his finger on his right hand...he keeps it extended."
"Oh, yes...thats THE finger. It's his favorite. He likes to keep it ready for use." I laugh again "He sucks it."
At this point, alot of whispering back and forth between the Rn and the social worker starts. I catch the words "ON THE SPECTRUM" and "AUTISTIC".
I have capitalized these words, because thats how they felt as I heard them.
The occupational therapist decides to try a few things with him.
"Will he sit in a chair?" she asks.
"Um...maybe." I say. "Nix, come here a second." He ignores me because he has found a barn full of animals. He is taking them out and lining them up. "Bubbie...come to mama." He is not responding. I get up and go to get him. He freaks out and starts screaming and hitting me. I try to get him into the cube chair that they have provided me for him. It is impossible. He has become a screaming tornado of arms and legs. One of the ladies tries to help me and he spazzes even more. We give up and let him go. He runs to a corner of the room and yells at us in his strange "bubbie talk" while wagging his finger towards us.
The questions resume. At this point I am near tears.
"We think that he may be on the Autistic Spectrum." one finally says. "Maybe Aspergers, but probably PDD-NOS. Either way, we believe that he is higher funtioning." She smiles at me. After my brain recovers I respond meekly with "But he smiles...he makes eye contact."
"The spectrum is wide and there are varying degrees of symptoms. He does smile and makes eye contact, but he is generally un interested in any of the people in this room right now."
"Well, we always knew he was different." I stammer...the tears are starting to come out.
Since that day we have had a roller coaster ride of appointments, theories, tests, and way too much googling. We have gone from totally despondant to feeling that everyting will be fine to a kind of limbo where we have accepted that it is what it will be.
I guess the hardest part has been realizing that he is the same little man that he was before all of this...that the label is meaningless.
One thing that I have learned through all of this is that nothing happens quickly when you are trying to get help for a child who may fit into this spectrum. We are currently in que for a mariad of services...none of which will happen anytime in the next two months. It is a 3-4 month wait for evaluation through U of M - even though I work there. It is even longer through PC public schools. You can be the best advocate that you can - you can make the calls, leave the messages, and wait for the call backs, but the answer is always the same...there is a wait. It will be a while. There are so many ahead of you. The feeling of total helplessness is hard to battle.
In the end, I really believe that Nix will be OK. I think he always be a bit "different", but arent we all? So what if he wont touch cold things...is that so bad? If he really doesn't care if he socializes with every person he comes into contact with why should I? He loves the people who are important, and the small things that he does to show it are worth a million empty gestures that we all display every day.
We are lucky...that I know from starting our group therapy through the PC schools. Some of the kids in his group are so locked away...their minds just not connecting with ours. I have witnessed the extremes of "The Spectrum" first hand and I know that we are no where near the extremes of the disease. Nixon is the tip of the iceberg.
We (I) have been fortunate to have the support of a fantastic family who have been through alot of their own sorrows with their children. Our good friends (I wil call them the "W"s) have not only been there for emotional support, but have also watched Reaghan while we have had to take Nixon to his child psychologist. Ms. W has also come over to watch the kids and put them to bed while Bill and I attend a parenting class with parents of other special needs childern. The W's are fantastic people who I feel have a firm grasp on what is truelly important in life...family and friends (to them the two are the same). They are good friends of ours and I am completely humbled by the amount of support we have received..to them we will be eternally gratefull.
In the end, we are the same. This has become very important to me. Nothing has really changed, as much as our perception of our reality has changed. We will continue to be the same family, the only change being that our new understanding of his behavior allows us to be better parents. We will do everyting possible. We will be advocates. We will also not become "the parents of that autistic kid". Like E from the Eels said "You just gotta let it go". Life goes on, and so will we.
Sunday, January 20, 2008
Reaghan's "One Thing"
Reaghan, though out of diapers, is still occasionally going 'poo poo' in her pants. We had tried everything from toys to stickers to intice her to use the potty...no luck. At work one day I was talking to another mom who has older kids...she said that I just had to find the "one thing" to get her to go #2 on the potty.
I think we found it.
This girl will do anything for ice cream...especially Blue Moon.
I think we found it.
This girl will do anything for ice cream...especially Blue Moon.
Saturday, December 29, 2007
December
Yeah...I know...it's been a while.
I've heard it again and again from everyone we saw while visiting over the holidays.
It's not that there isn't anything to say...it's just that somehow there is so much to say that I become overwhelmed by the choices.
So I guess I'll start with just some pictures.
Tuesday, September 25, 2007
Hello Again
Whew...the last few weeks have been a whirlwind! I do believe that we are fully embedded into the "terrible twos" as each kid seems to have morphed into an evil twin of themselves (evil twins of twins...hmmm). Not only have the tantrums, fighting, and just general WHINING been around the Dink household, but Nixon had another ear infection (including a perforated eardrum) and right now both kids are having some sort of bug. They had their flu shots last week, so it makes me wonder even though I have heard a THOUSAND times that the flu shot doesn't get you sick.
On the good note, potty training is clipping right along. Both kids have been pee'ing on the potty, Rea more than Nix but that is no surprise. Reaghan has been known to do the poo poo in the potty as well - as she likes to say "BIIIIGG POO POO". Nixon has yet to do the big "#2", but he'll get there.
Bill is out of town (again) for a few days, leaving me to deal with the sickees - must be nice to eat out at a restaurant and then fall asleep in a big hotel bed...I need a vacation.
On the good note, potty training is clipping right along. Both kids have been pee'ing on the potty, Rea more than Nix but that is no surprise. Reaghan has been known to do the poo poo in the potty as well - as she likes to say "BIIIIGG POO POO". Nixon has yet to do the big "#2", but he'll get there.
Bill is out of town (again) for a few days, leaving me to deal with the sickees - must be nice to eat out at a restaurant and then fall asleep in a big hotel bed...I need a vacation.
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