Showing posts with label Down syndrome stuff. Show all posts
Showing posts with label Down syndrome stuff. Show all posts
Sunday, May 18, 2008
The IEP
So 2 days after the Psych eval went home, the IEP/MET took place. I am delighted to say that these wonderful people working with my son see him the way I do. We discussed at length his strengths, his potential, his value. They get it. This was the most empowering and validating IEP I have ever had the privilege of attending. Praise our Great God for creating people like the ones who work with my son.
Labels:
Bert,
Down syndrome stuff
Tuesday, May 13, 2008
The Bell Curve

Bert had his first full psych eval done at school. This is done primarily to assess the IQ, and assist in determining placement. This is a quick explanation of the IQ bell curve. See the very bottom of the curve? That lowest percentile of people? That little tip of the bell that is <60? That is Bert. He's down in that teensy bit of bell.
I am not a delusional person. I have a pretty good grasp on the daily living and cognitive skills of my son, and I know that he functions still about at the level of a 2 year old, more or less. He turned six last week, so I have been parenting the same growing child, now 50 lbs as a 2 year old for about 4 years. We have effectively ruled out the autism aspect as instead severe Sensory Processing Disorder coupled with a very low IQ and ADHD. Honestly, I'm not convinced that the ADHD is accurate. C'mon, what kind of attention span do you expect a 2 year old with SPD to have?
Alas, it is difficult to read a report in which your child's intelligence is graphed and documented in formal language by a licensed psychologist that states your son tested low compared to his same age peers, over and over. It sucks to see a number that has been referred to as "trainably mentally impaired" or "severely mentally impaired". Though I did not relish reading it, it was like reading a story that I'd heard over and over again in spoken word. The document was newly drafted, but it was not unexpected. I was pleased with myself that I handled it as the information that it was, no big emotional breakdown required. Yet still, I can't seem to get my mind to let go of the graph of my son's IQ.
Tuesday, April 29, 2008
Absolute Must Read Blog Post
Michelle, at DownBlogger posted "Bad Medicine".
Go, Read, Bring tissues, take your time. There is much content in this post, very important content.
Go, Read, Bring tissues, take your time. There is much content in this post, very important content.
Labels:
Down syndrome stuff,
eugenics
Thursday, April 24, 2008
My Child's Story

OK, I found this blog carnival at In The Life of a Child, and decided to join in. However, I have 3 kids with Spec Needs, So I will write a brief overview of each, rather than a comprehensive post on one.
Bert (aka Alex) was my second child, but he introduced me to the world of Special Needs. After an emergency C-section because somehow he no longer found my womb compatible with life, Bert came into this world gentle as a lamb. His first cry was when he was 3 weeks old, I'll never forget it. Beaner stepped on his hand while he was basking in a sunny spot in the living room. I was thrilled, he cried! Bert was born with a little bonus in the 21st chromosome. Most people associate this condition, called Down syndrome, with mental retardation and the obvious facial differences that those especially blessed kiddos carry. I, instead associate this with an incredible ability to live in, and enjoy the present moment, a delight in this world, and an especially large heart.
When Bert was <2, the Chief left to check on his sister, who was in heroin withdrawal, and came home with our Rockstar (Chels). She was 13-1/2, but the size of a rather small 10 year old. She had long, scraggly hair, was pale and drawn, with haunted eyes. At the time I had no idea that she would become my daughter, but through time and experiences, she is. Her mother passes away nearly 3 years ago, leaving me to parent an orphaned teenager. Rockstar has since been diagnosed with PTSD, bipolar, and RAD. There were times in parenting her that I had resigned myself to believe that she may never be a productive citizen, that if helping her find Jesus was all I did for her, that would be enough. I am thrilled to say that by the power of the Holy Spirit, she has found Jesus, and much more. She is living abudantly, and though she doesn't always make great choices, she is learning and growing, and has blessed our family beyond measure.
The last child to enter our family is Schmoozer (Ben). In early 2006 we submitted our information to Robin Steele of the Adoption Awareness program, hoping to adopt a second child with Down syndrome. Within 3 weeks we got a call, matching us to Schmoozer's natural parents. After waiting 3-1/2 months for research and decisions to be made, and for paperwork to clear, we brought Schmoozer home from the District of Columbia. Within days, we realized 2 things: 1. that he didn't poop right at all and 2. that he didn't hear right at all. As time has gone by, we found that not only does Schmoozer have DS, but is also moderately to moderately severely hearing impaired, he has Hirschsprung's disease, he has hypothyroidism, and to top it off, he has Cyclical Vomitting Syndrome. Talk about getting more than you bargained for! Schmoozer has filled, not only our hands, but also our hearts, to capacity. Through 8 hospital admissions and more tests and proceedures that I care to remember, his delightful presence has blessed us by his will to live, his spirit, and his ability to learn, despite all the odds against him.
It has been a delight and pleasure to parent these amazing kids. I have learned so much about myself, my priorities, about my Lord and Savior, and about living in the moment from these kids. Though they have brought with them struggles beyond measure, they have blessed us far more abundantly than that!
May I add, last but not least, my Beaner (Hannah). She was my first child, but now she's not my oldest. She is totally typical, bright, precocious, gentle and sweet. She never asked for such a house full of crazy sibs, but she wouldn't change them. She is, by virtue of being the only typical child in a house of 4 kids, also a child with special needs. Of all of my amazing kids, she amazes me the most. What a blessing she is!
Monday, March 31, 2008
AAAAAAARRRRGGGHHHHH
Picture me, all psyched up, did my hair, makeup to a tee, ready to go. Today was Ben's hearing aid appointment. The Chief and I have been dying to get this kid hearing. Imagine living with a busy 2 year old who doesn't hear a lick. It's beyond challenging, and his hearing aids have been our light at the end of the tunnel. We know Schmoozer is bright, he learns quickly, but he can't hear, he's bored, lacking stimulation of music and voice, he is constantly seeking other stimulation, and not even hearing us scold him, well, it's not pretty, every battle must be fought hands on. It's not uncommon for parents of HOH kids to feel this way, HOH kids can be monsters.
So, imagine the look on my face when the staff advises me that medicaid will not cover the deductible primary insurance. This is no small potatoes deductible, it's $500/hearing aid. Of course, that's not too shabby, considering that they are covering $7000/hearing aid. (Oh my, I think I heard a couple people hit the floor reading that).
Fortunately, the story does not end there. Because Ben is disabled, we can apply for Children's Special Healthcare Services. They will cover everything, even batteries and repairs as needed. It's a better deal overall.
But here's the kicker.... I called. I did my homework, I asked the questions ahead, specifically to clear the obstacles and streamline the proceedings. I called our health insurance carrier, I called medicaid, and I called the Audiology office. If I'd just been along for the ride and got caught with my pants down, it would be one thing. But doggone, I try so hard. I dot my i's and cross my t's, and yet I still got run right off the tracks today.
It's not parenting special needs kids that's the hard part. I can handle all they have to dish out for the "payment" of a couple hugs and a big old sloppy kiss. It's the red tape and nonsense like this that gets me down.
Alas, on a rainy, icky day, my mood matches the weather, and the fat, wet tears that slipped out as I left the Audiology office without even getting ear molds made will not be so noticeable with the fat, wet raindrops that hit my coat as I walked.
So, imagine the look on my face when the staff advises me that medicaid will not cover the deductible primary insurance. This is no small potatoes deductible, it's $500/hearing aid. Of course, that's not too shabby, considering that they are covering $7000/hearing aid. (Oh my, I think I heard a couple people hit the floor reading that).
Fortunately, the story does not end there. Because Ben is disabled, we can apply for Children's Special Healthcare Services. They will cover everything, even batteries and repairs as needed. It's a better deal overall.
But here's the kicker.... I called. I did my homework, I asked the questions ahead, specifically to clear the obstacles and streamline the proceedings. I called our health insurance carrier, I called medicaid, and I called the Audiology office. If I'd just been along for the ride and got caught with my pants down, it would be one thing. But doggone, I try so hard. I dot my i's and cross my t's, and yet I still got run right off the tracks today.
It's not parenting special needs kids that's the hard part. I can handle all they have to dish out for the "payment" of a couple hugs and a big old sloppy kiss. It's the red tape and nonsense like this that gets me down.
Alas, on a rainy, icky day, my mood matches the weather, and the fat, wet tears that slipped out as I left the Audiology office without even getting ear molds made will not be so noticeable with the fat, wet raindrops that hit my coat as I walked.
Labels:
Down syndrome stuff,
Hearing Impairment,
LeeJo,
schmoozer,
the Chief
Saturday, March 8, 2008
Puzzling
My boys each have big appointments this week. Schmoozer gets his ABR, and Bert gets the results of the sleep study of that seems like it was eons ago.
On the eve of such appointments, I find myself puzzling over and over in my mind. Trying to arrange all the pieces I have in such a way that with my limited knowledge I can manage to predict the results. I have just enough pieces though, that there's a part of my brain that won't quit trying to make a valid picture from them.
It's a running monologue and it goes like this:
or:
It's not worry, per se. I'm sleeping fine, I don't feel anxious or upset about it. It's just running in the background, like the silly muzak in the elevator. It is just there, going on in the background, and I'm not even sure if it shuts off, and if it does shut off I don't have the switch anyway, so I just let it fade to the background most of the time, and when I'm not otherwise occupied, I play it out to the end in my head. Each time I kind of expect to come up with real answer, so solve the puzzle. Each time I end up a few pieces short, and each time I realize I cannot solve it on my own anyway. It happens every time some new test or result or referral comes along, it's just part of the elevator ride.
Even though it's in my head, I still find it odd.
On the eve of such appointments, I find myself puzzling over and over in my mind. Trying to arrange all the pieces I have in such a way that with my limited knowledge I can manage to predict the results. I have just enough pieces though, that there's a part of my brain that won't quit trying to make a valid picture from them.
It's a running monologue and it goes like this:
Ok, so during the sleep study Bert would stop breathing for what, a count of 10...I'm pretty sure that qualifies as full blown apnea...The doctor had referred to the fact that he's not really a candidate for CPAP due to his sensory issues and mentioned ENT referral for surgery depending on the results...So will his sinuses need roto-routed or does he need a hyoid bone suspension for floppy airway, or both? would he have to spend the night if he has surgery? what am I thinkin', I don't even know what his results are, they may be fully normal and I'm just going over this all for nothing, and even if I'm right or totally off the mark, it doesn't make a difference, the study shows what it shows.
or:
Last time Schmoozer had the ABR it only showed mild conductive hearing loss, is it worse this time, his behavioral audiogram is worse now than it was then, is there sensorineuro damage in the meantime, or is it still primarily conductive hearing loss? The nurse who called said he will need IV sedation, have his veins improved in the 3 month reprieve from constant poking, or is he still a hard stick? Will it be a nightmare of IV starts again leaving me feeling like a cold wet washcloth, or maybe, just maybe will the get it on the first or second...for that matter even the third or fourth try? The test adds tones that weren't in the last ABR, will they really get a good accurate picture of his hearing from this? Will the tech give me the results while we're there like last time, or will I have to wait?
It's not worry, per se. I'm sleeping fine, I don't feel anxious or upset about it. It's just running in the background, like the silly muzak in the elevator. It is just there, going on in the background, and I'm not even sure if it shuts off, and if it does shut off I don't have the switch anyway, so I just let it fade to the background most of the time, and when I'm not otherwise occupied, I play it out to the end in my head. Each time I kind of expect to come up with real answer, so solve the puzzle. Each time I end up a few pieces short, and each time I realize I cannot solve it on my own anyway. It happens every time some new test or result or referral comes along, it's just part of the elevator ride.
Even though it's in my head, I still find it odd.
Labels:
Bert,
Down syndrome stuff,
Hearing Impairment,
I'm A DORK,
schmoozer,
us
Wednesday, March 5, 2008
When Did This Happen
I was reading on a discussion forum today and started crying. By God's grace alone I was able to respond in what I think was an upbeat manner, we'll see how people react.
The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.
The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".
Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.
These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.
And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.
My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!
The problem was language. The thread was about a potential adoption opportunity in which both of the birth parents have some form of seizure disorder or mental disability, it's hard to tell exactly.
The overall note of the thread was open, honest and good. What bothered me was that a few posters used terms like "suffer from a disability" or "Down syndrome babies".
Have you seen the photos of my boys? Are they suffering? Are they defined by a third 21st chromosome, giving them a title of Down syndrome baby.
These little stinkers amaze me so much. I think of Schmoozer. Born with 5 weeks early with Down syndrome and Hirschsprung's disease (which was not treated until he was 15 months old). Developed Hypothyroidism and has moderate to severe hearing impairment, and deals with Cyclical vomiting syndrome to boot. Yet this little man is so full of life, so ready to give each day his best, so bright and beautiful! He has so many knocks against him, yet he's out to rule the roost and live the good life.
And Bert. Again, born with Down syndrome, his sensory systems send crazy mixed signals, he has to work hard to find a word he wants to use, and even harder to get his mouth around it. But his is such an incredible little person, he brings a smile and light everywhere he goes, and digs in and gives his best, he meets each challenge he faces with eagerness and excitement.
My sons are not suffering with mental retardation. They have not been afflicted, and it doesn't define them. They are children of God. They are beautiful and incredible. My biggest wish is that the whole world could see them as I do!
Saturday, March 1, 2008
Deaf/HOH
Last night I had what can only be described as a nightmare about Schmoozer's hearing. During this past week I met with the Deaf/HOH teacher, and got a much clearer picture of what we have in store for the Schmooze with his hearing. I was under a false impression that his hearing could be "fixed" at some point. Well, if it was "just fluid" that would be true. Unfortunately, what I choose not to hear before (though I remember being told) is that "just fluid" would typically test about 30-50 dB better than Schmoozer did, awareness of speech at 70dB. That's a shout, from pretty close like right in front of him. That's not what Schmoozer hears clearly, that's where his hearing starts....at 70dB. It's nearly impossible to chalk that up to just fluid, so it's nearly impossible to believe that his hearing will be "fixed" anytime soon.
So I have been looking into more signing, and trying to get an idea of what the Deaf/HOH community has to offer. I'm not finding a whole lot. The DS community is so large, so supportive, so wonderful, that I guess I had grand expectations. We'll see, maybe I just haven't stumbled upon the right google search yet.
Alas, all this has brought on a nightmare. I don't remember much except that the little girl next door who has a reputation as a tattle tale, came and told me that Schmoozer was deaf, and to just live with it. I remember people signing, and I remember sobbing, sobbing sobbing.
I guess this is part of coming to terms with another label, another diagnosis, another disability. From past experience I know we will be just fine, I know that this low will return to normal, and that we will get a good handle on Deaf/HOH living and do better than well.
But for now, I feel like crying.
So I have been looking into more signing, and trying to get an idea of what the Deaf/HOH community has to offer. I'm not finding a whole lot. The DS community is so large, so supportive, so wonderful, that I guess I had grand expectations. We'll see, maybe I just haven't stumbled upon the right google search yet.
Alas, all this has brought on a nightmare. I don't remember much except that the little girl next door who has a reputation as a tattle tale, came and told me that Schmoozer was deaf, and to just live with it. I remember people signing, and I remember sobbing, sobbing sobbing.
I guess this is part of coming to terms with another label, another diagnosis, another disability. From past experience I know we will be just fine, I know that this low will return to normal, and that we will get a good handle on Deaf/HOH living and do better than well.
But for now, I feel like crying.
Labels:
Down syndrome stuff,
Hearing Impairment,
schmoozer,
us
Wednesday, February 6, 2008
2 Years of Schmoozer

I adore this kid. He amazes me. He is so full of life and confident, fun and funny. I am so grateful to be his mom. Happy Birthday Schmoozer!
It's funny though. I called Medicaid to find out about hearing aid coverage. (We're all set, no out of pocket expense after private ins. and medicaid YAY!) Anywho, he still has his birth name on his medicaid card. This fact causes me some grief in using it, but I like it that way. For that same reason I have never gotten an amended birth certificate. The Schmooz had a SS# when he came home to us, so we never needed it. I think Bethany was supposed to have done it, but alas, it didn't happen. To be honest I couldn't care less. So when the very helpful young woman at Michigan Medicaid offered to send me a card for Schmoozer with our last name on it, I found it hard to accept. It's only reasonable, but it feels weird.
I think about the Writer and the Prosecutor a lot on Schmoozer's big days. I wonder how their day is going. Though we are in contact, it is by email, and mostly from me, so I don't know much about how they are doing.
I never anticipated that it would be this complicated. That I would have a very real and genuine love for the people who brought my son into the world, and that there would be many times that I would wish they could benefit from the delight he brings us, that they could know him and love him like I do. It's just so complicated.
My boy is 2, and I couldn't be prouder of him!
Labels:
adoption,
Down syndrome stuff,
Hearing Impairment,
schmoozer
Monday, February 4, 2008
A New Spring in My Step
I knew that having my typical daughter, first son with DS, then adding a teenager and a second son with DS would not be an easy lifestyle. I knew that when my husband took a job that had him living outside of our home for 10 months, that I would be spread even thinner. Then when Schmoozer started having medical issue after issue, and Bert's behavior would not get any better, and Rockstar just kept having trouble, I started going down hill. I got tired, very tired, then exhausted, then depressed.
I am familiar with situational vs. clinical depression, and I knew that I had a severe situational depression, but never got treated. After all, how do I find time to take care of me?
Finally, with Schmoozer mostly under control and just hearing aids left in a long line of ailments, with Bert settling in and just awaiting the results of the sleep study and whatever intervention that necessitates, and with Rockstar settling in and getting ready for college, I have a wee bit of time to indulge myself. I am finally getting treated for a neck issue that I've had for years, and feel so much better. I am seeing easier days coming, and man does it feel good. My burden is lightening little by little, and it finally feels manageable.
The corner turned when I found out that we will most likely have zero out of pocket expense for Schmoozer's hearing aids. (Picture me with a giddy mom face here).
....and did I mention that the Chief and I are getting away for a night. To a resort with an indoor waterpark. :-)
I am familiar with situational vs. clinical depression, and I knew that I had a severe situational depression, but never got treated. After all, how do I find time to take care of me?
Finally, with Schmoozer mostly under control and just hearing aids left in a long line of ailments, with Bert settling in and just awaiting the results of the sleep study and whatever intervention that necessitates, and with Rockstar settling in and getting ready for college, I have a wee bit of time to indulge myself. I am finally getting treated for a neck issue that I've had for years, and feel so much better. I am seeing easier days coming, and man does it feel good. My burden is lightening little by little, and it finally feels manageable.
The corner turned when I found out that we will most likely have zero out of pocket expense for Schmoozer's hearing aids. (Picture me with a giddy mom face here).
....and did I mention that the Chief and I are getting away for a night. To a resort with an indoor waterpark. :-)
Labels:
Beaner,
Bert,
Down syndrome stuff,
Hearing Impairment,
I'm a little bit naughty,
LeeJo,
Rockstar,
schmoozer,
us
Saturday, February 2, 2008
I'm putting it Together
2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2+2
For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.
We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.
Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.
I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?
For the first time in a long time, I am hoping that things are all adding up, that we are getting somewhere, and that there is a break in my reasonably near future. Schmoozer's getting hearing aids. That is the last of the significant medical stuff we've had going on with him. We've been able to manage his Cyclical Vomiting better since we know what it is and have meds to deal with it. I can hardly believe it's been 2-1/2 months since he's been admitted to the hospital! He was admitted 8 times last year, for at least one night, and up to 10 nights.
We have Bert's sleeps study done, we have Speech lined up (waiting for the therapist to get approval from our insurance to start), he's doing well in his new school. So once we get the sleep study results and whatever treatment is required (possible surgery?), we should be sailing pretty smooth with him too.
Beaner is hanging in, but needing extra lovin'. Rockstar has an enormous Grad Party to prepare for, but that's cake.
I think I see light at the end of the tunnel, and I think I like it. What would a semi-normal family life be like?
Wednesday, January 23, 2008
Friday, January 18, 2008
70 Freakin' Decibels
Ya know, when you get your radio going. A song you like, just loud enough, but not too loud. You're jammin'. Or you're in the office, and it's just a little too noisy. Just enough noise to be annoying and distracting. It bugs you, it's just that much louder than normal.
That would be the minimum sound Schmoozer can hear. 70 Freakin' Decibels. He is on the brink of severely hearing impaired. This is an ongoing battle. The hearing loss is conductive, which means it's because he has tiny canals and lots of fluid, even with tubes.
The ENT Doc told me to use drops to clear the tubes. Do you know how impotent that feels. The tubes are just over a month old, he doesn't want to replace them since he can't get anything bigger than those stupid Tiny Titans in, the new ones would be plugged in a month anyway. What next? Hearing aids? Something else?
BLAH!
That would be the minimum sound Schmoozer can hear. 70 Freakin' Decibels. He is on the brink of severely hearing impaired. This is an ongoing battle. The hearing loss is conductive, which means it's because he has tiny canals and lots of fluid, even with tubes.
The ENT Doc told me to use drops to clear the tubes. Do you know how impotent that feels. The tubes are just over a month old, he doesn't want to replace them since he can't get anything bigger than those stupid Tiny Titans in, the new ones would be plugged in a month anyway. What next? Hearing aids? Something else?
BLAH!
Labels:
Down syndrome stuff,
Hearing Impairment,
schmoozer
Wiggle Tooth
Wiggle tooth has been all the topic of conversation in our house of late. Seems I'm not the only one around here who is blown away by our little Mister loosing a tooth. Did I say loosing? I meant LOST! There is no more "loosing" about it. Here is our photographic catalog of the experience:

Bert graciously says "CHEESE!"

There is a tooth, a teeny tiny tooth, somewhere in the Ziploc
And, Yes, there are about a billion dishes on my counter, there always are.

Mommy is a good sport and let's Bert take one for being such a good boy!

Bert graciously says "CHEESE!"

There is a tooth, a teeny tiny tooth, somewhere in the Ziploc
And, Yes, there are about a billion dishes on my counter, there always are.

Mommy is a good sport and let's Bert take one for being such a good boy!
Labels:
Bert,
Down syndrome stuff,
I'm A DORK,
us
Wednesday, January 16, 2008
Monday, January 14, 2008
It's the Little Things
I can be brave through IEP meetings, doctors visits, surgeries and the like, but still find myself at a total loss over something little. That something, *this time* is a loose tooth. Bert has his first loose tooth. He's 5-1/2, it's right on time. But it's not. My son is aged 5-1/2 years on this earth, but he's not a five year old, not a four year old, maybe approaching 3, but really he's pretty much a 50 pound 2 year old. I can see that on developmental tests, I can tell by the way he talks. You know, I even like it. There is something wonderful about the 2 year old mentality. But when his own body betrays him. When his development actually demands that his actual age be acknowledged, it sends me into a tailspin.
On Saturday we were hanging about in the living room. Bert was sitting by me and we were making silly faces. He started drooling, as has been happening since "wiggle tooth" first made it's presence known, and I started crying. Plus-sized, full blown crocodile tears. I had no foreknowledge that this would happen, no notion that wiggle tooth would demand this of me, but it did.
My son should be in Kindergarten. This should be a rite of passage that he anticipates with high expectations. The tooth fairy should be all the rage in our conversations. He should be wiggling his own tooth and doing his darnedest to get it out for some booty.
How on earth could a tooth have that much effect on me?
On Saturday we were hanging about in the living room. Bert was sitting by me and we were making silly faces. He started drooling, as has been happening since "wiggle tooth" first made it's presence known, and I started crying. Plus-sized, full blown crocodile tears. I had no foreknowledge that this would happen, no notion that wiggle tooth would demand this of me, but it did.
My son should be in Kindergarten. This should be a rite of passage that he anticipates with high expectations. The tooth fairy should be all the rage in our conversations. He should be wiggling his own tooth and doing his darnedest to get it out for some booty.
How on earth could a tooth have that much effect on me?
Labels:
Bert,
Down syndrome stuff,
us
Friday, January 11, 2008
Feeling Boggy
Some of it's the January BLAHS. Some of it is the fact that between my two boys I haven't had a 2 good night's sleep in a row in months (years?) Some of it is life with special needs kids....3 of them. I feel like for every time we celebrate a success or victory we are bogged down in yet another miry swamp that we must find our way out of. If it's not one, it's the others, and if all 3 special needs kids are doing well then Beaner automatically has a problem.
My sister, a mother of 6 typical kids feels the same way most of the time, so at least I'm in good company!
My sister, a mother of 6 typical kids feels the same way most of the time, so at least I'm in good company!
Labels:
Down syndrome stuff,
us
Sunday, January 6, 2008
Simply Amazing
This week I found out that one of the most overwhelming, horrifying events of my life has turned into a blessing.
Bert has been visiting a multidisciplinary behavioral resource center where he has gotten psych evals, PT evals, sensory evals, and stands to get OT and speech evals. For years extra speech therapy is something we've known he needs, wanted for him, but simply could not provide financially. The speech therapists at school have varied in expertise, energy level, and willingness to got he distance for him, and his current SLP is above and beyond the others he's seen. Yet it's only a bit of time each week, and with the difficulty in communication between school and home, follow through is just what I can manage to figure out.
So now, after his pysch review, we have realized that Bert's birth (as written here) is his ticket to speech therapy. Down syndrome is a developmental disability. Insurance companies won't and don't usually cover therapies for developmental disabilities. But alas, insurance companies do cover therapies for traumatic birth and hypoxia at birth, both of which Bert had. So here we are, happy to find out that indeed, we can get his speech therapy covered.
Now, enter our local Down syndrome speech guru. LK has partnered with the Down Syndrome Association of West Michigan and Talk Tools and has educated herself as a specialist of sorts in speech issues of children with Down syndrome. If you have DS in this area, she is the SLP to see. By amazing blessing, Bert has been placed on LK's schedule, and will be evaluated and treated by her, courtesy of our insurance. It is simply amazing, overwhelming. The Holy Grail has been handed to us. I am grateful beyond words.
Now, as a kicker, once again I have found the opiate of validation. You see, our psychologist realizes that kids like Bert don't *just* respond to normal or even excellent disciplinary measures. That even the most together and consistent parent cannot always manage a child like him, and that when you have a child like him you cannot always be the most together and consistent parent. We are in a marathon, not a sprint. Bert will not be sleeping through the night tonight just because I use the right interventions, Bert will not behave in public this week no matter how good of a mom I am. But someday he can and will, and now I have another partner to help us get there. Oh, Praise Jesus, we'll get there.
Bert has been visiting a multidisciplinary behavioral resource center where he has gotten psych evals, PT evals, sensory evals, and stands to get OT and speech evals. For years extra speech therapy is something we've known he needs, wanted for him, but simply could not provide financially. The speech therapists at school have varied in expertise, energy level, and willingness to got he distance for him, and his current SLP is above and beyond the others he's seen. Yet it's only a bit of time each week, and with the difficulty in communication between school and home, follow through is just what I can manage to figure out.
So now, after his pysch review, we have realized that Bert's birth (as written here) is his ticket to speech therapy. Down syndrome is a developmental disability. Insurance companies won't and don't usually cover therapies for developmental disabilities. But alas, insurance companies do cover therapies for traumatic birth and hypoxia at birth, both of which Bert had. So here we are, happy to find out that indeed, we can get his speech therapy covered.
Now, enter our local Down syndrome speech guru. LK has partnered with the Down Syndrome Association of West Michigan and Talk Tools and has educated herself as a specialist of sorts in speech issues of children with Down syndrome. If you have DS in this area, she is the SLP to see. By amazing blessing, Bert has been placed on LK's schedule, and will be evaluated and treated by her, courtesy of our insurance. It is simply amazing, overwhelming. The Holy Grail has been handed to us. I am grateful beyond words.
Now, as a kicker, once again I have found the opiate of validation. You see, our psychologist realizes that kids like Bert don't *just* respond to normal or even excellent disciplinary measures. That even the most together and consistent parent cannot always manage a child like him, and that when you have a child like him you cannot always be the most together and consistent parent. We are in a marathon, not a sprint. Bert will not be sleeping through the night tonight just because I use the right interventions, Bert will not behave in public this week no matter how good of a mom I am. But someday he can and will, and now I have another partner to help us get there. Oh, Praise Jesus, we'll get there.
Labels:
Bert,
Down syndrome stuff,
SPD,
us
Friday, December 21, 2007
Ready or Not, Here it COMES
I know I've hashed this over here before, but why, oh WHY do pre-adoptive parents get so wound up in what type of child they would accept?
Checklists and questions and what if's. Drug or alcohol use by mom, physical impairment, developmental disability, race, color, creed or gender.
I understand the reasoning behind the agency's asking, but I still despise it. It further promotes an industrial feeling to adoption, and maybe I'm overstepping (but hey, it's my blog), but I really think that people may just be rejecting a chance to really see Jesus.
Since I have said it until my toenails fell of from lack of oxygenation, let me give you another example. My favorite local station is 91.3 WCSG. While listening last week, a key member of our local Down syndrome association sponsored a day, dedicated to her daughter Ruth, who turned 9 that day, and has Down syndrome. I do not have access to the exact words of the dedication, but she speaks of the lessons Ruthie has taught her, of the person that Ruthie has helped her develop into. In closing, she states, "God rescued me through you, Ruth Noel"
I cannot say it better. I was a Christian, a decent ethical person, and in desperate need of rescuing. God rescued me. Starting with Bert, then Rockstar, then Schmoozer.
Had God given me a checklist to fill out at the beginning of my pregnancy with Bert of conditions, which I could accept or decline, would I have put Down syndrome on my list? I don't rightly know, but I suspect I wouldn't have. 6 years ago, I would have told you, hands down, no way do I have the tools to parent a child like Bert. No friggin' way.
Had it been up to my own good intentions, would I ever have adopted a teenager? I know for sure, NO WAY! Not a chance, don't even think about it. I wouldn't have needed a checklist, it would have been a flat "no". Had I known that Rockstar would become ours forever, that she would grow to consider me her mom, that reconciliation would never happen, that I was in this for good, I'm not sure I would have taken her home in those early days, I'm not sure I wouldn't have pushed for her to go with her grandma, dad, or someone else. I would never have believed that I could parent her, not just house her.
I did fill our a checklist for Schmoozer. It was really pretty wide open, by then I trusted God, but would I have jumped in to try to adopt so quickly had I known just what a medical mess would follow? Would I have been so brave as to take my youngest son with full disclosure of all we have been through in this first year and a half with him?
Many people with a house full of healthy kids routinely tell me that God wouldn't give me more than I could handle. It's a cute, pat phrase, especially when you're not living it. God has given me more than I ever wanted to handle, he's given me far more than I ever wanted. He's rescued me, a thousand times over. Each and every struggle I broach with my amazing brood of kiddos brings me closer to Him. Each new voyage is to a place that my Lord and Savior has planned for me.
It is not out of spite that I get frustrated with those who say "no". I would have too. I feel sad for them. I know that God can and will and does work in each life differently, and can and will and does work in those lives too. But I just cannot help but believe that I had more blessings laid upon me than the average, simply because I did not have the chance to say "no" to them. My God has become so big, so real, so amazing to me, simply by virtue of the children in my home.
My God does not fit into any box, nor would I want him too.
Checklists and questions and what if's. Drug or alcohol use by mom, physical impairment, developmental disability, race, color, creed or gender.
I understand the reasoning behind the agency's asking, but I still despise it. It further promotes an industrial feeling to adoption, and maybe I'm overstepping (but hey, it's my blog), but I really think that people may just be rejecting a chance to really see Jesus.
Since I have said it until my toenails fell of from lack of oxygenation, let me give you another example. My favorite local station is 91.3 WCSG. While listening last week, a key member of our local Down syndrome association sponsored a day, dedicated to her daughter Ruth, who turned 9 that day, and has Down syndrome. I do not have access to the exact words of the dedication, but she speaks of the lessons Ruthie has taught her, of the person that Ruthie has helped her develop into. In closing, she states, "God rescued me through you, Ruth Noel"
I cannot say it better. I was a Christian, a decent ethical person, and in desperate need of rescuing. God rescued me. Starting with Bert, then Rockstar, then Schmoozer.
Had God given me a checklist to fill out at the beginning of my pregnancy with Bert of conditions, which I could accept or decline, would I have put Down syndrome on my list? I don't rightly know, but I suspect I wouldn't have. 6 years ago, I would have told you, hands down, no way do I have the tools to parent a child like Bert. No friggin' way.
Had it been up to my own good intentions, would I ever have adopted a teenager? I know for sure, NO WAY! Not a chance, don't even think about it. I wouldn't have needed a checklist, it would have been a flat "no". Had I known that Rockstar would become ours forever, that she would grow to consider me her mom, that reconciliation would never happen, that I was in this for good, I'm not sure I would have taken her home in those early days, I'm not sure I wouldn't have pushed for her to go with her grandma, dad, or someone else. I would never have believed that I could parent her, not just house her.
I did fill our a checklist for Schmoozer. It was really pretty wide open, by then I trusted God, but would I have jumped in to try to adopt so quickly had I known just what a medical mess would follow? Would I have been so brave as to take my youngest son with full disclosure of all we have been through in this first year and a half with him?
Many people with a house full of healthy kids routinely tell me that God wouldn't give me more than I could handle. It's a cute, pat phrase, especially when you're not living it. God has given me more than I ever wanted to handle, he's given me far more than I ever wanted. He's rescued me, a thousand times over. Each and every struggle I broach with my amazing brood of kiddos brings me closer to Him. Each new voyage is to a place that my Lord and Savior has planned for me.
It is not out of spite that I get frustrated with those who say "no". I would have too. I feel sad for them. I know that God can and will and does work in each life differently, and can and will and does work in those lives too. But I just cannot help but believe that I had more blessings laid upon me than the average, simply because I did not have the chance to say "no" to them. My God has become so big, so real, so amazing to me, simply by virtue of the children in my home.
My God does not fit into any box, nor would I want him too.
Tuesday, December 18, 2007
Strange but True


It is strange to me, it really is. It's strange how important sex is to men. After having my procedure done, I was ordered not to place ANYTHING into my vagina for 2 weeks.
The Chief nearly passed out when reading that portion of the instruction sheet.
At the end of 2 weeks, I can say this, my husband is a much more pleasant, much happier, helpfuller, and more kind, gentle, and tender man when he's getting it than when he isn't.
For me, 2 weeks without...eh, no big deal, for him, devastation. I think it's just how men are wired. By looking at the Chief, one can easily see that he is a highly testosterone charged man, but even I did not fully understand the extent to which this affected his sex drive, and how much this release affected him as a person.
After finally making it through the 2 weeks, he is singing, happy and pleasant this morning. I guess that will teach me.
Bert has a loose tooth. I am SOOOOOOOO not ready for him to loose teeth. I'm a bit disappointed that he won't understand the tooth fairy thing. In our house we prefer to avoid clouding Christmas and Easter with bunnies and men in red suits, we "play pretend" about these things, but never actually teach the kids to believe. So when it comes to the tooth fairy, mom has a hayday. Silly, I know, but I'm sad that he's loosing teeth before he's ready for the tooth fairy.
Now for me. I'm perturbed at myself. Seems one of my spinal nerves is pinched. Like, in my neck. I don't know exactly how or when it happened, I've had pain in my neck and shoulder for time immemorial, I always thought it was just my scoliosis. But with the tingling in my back and right hand, it was time to bring it up at my annual neurology appointment. I see her for migraines, and this was supposed to be a check up for that. She ordered a test called Electromyogram with Nerve Conduction Studies. That means she stuck needles into my muscles to see how much electrical charge they produce at rest and while flexed, and also shot electricity into the nerves to determine if they are conducting appropriately. No, it's not as bad as it sounds. From this she determined that I have nerve impingement at the level of my 8th cervical vertabra, which is most likely caused either by disk herniation or arthritis. An MRI will show if I need physical therapy or surgery, but I will certainly need one or the other as this is getting more and more uncomfortable daily.
Rockstar gave blood last night. The world almost ended. Last I checked it's still turning, but it's still in jeopardy. When the Rockstar doesn't feel well, the whole turn of the planet is in jeopardy, or so it seems. She has her pathetic face on and the voice to go with it. I highly doubt she will challenge herself to the noble calling of blood donation again soon.
Labels:
Bert,
Down syndrome stuff,
I'm a little bit naughty,
Rockstar,
the Chief,
us
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