In addition to the various issues already listed here in this blog, we got something new going on with Sam that is making me BATTY!
She is fidgeting with her hands. All the time. Fidget, Fidget, Fidget.
And why does this make me batty?
Because she fidgets with her clothes. She plays with the hem of her school jumper and works the hem out. she fondles the buttons on her winter coat and they come off. she unbuttons and buttons the bottom button on her school shirt until she either takes the button off or wears a hole in the shirt or BOTH.
I have mended, and re-hemmed and re-buttoned myself silly this past month.
This past Saturday was the straw that broke the Moma's back. We went to the au pair family Christmas party. Sam wore this beautiful NEW LL Bean Christmas sweater. (granted, it was purchased at the thrift store - but looked like it had NEVER been worn and it was the first time she had ever worn it.) Sam fidgeted with the hem in the front of the sweater until she pulled the hem out and frayed the front middle of the sweater. ARGH! And I don't knit - can't fix this one.
I am a fixer. and I can't fix this one. and I loved that stinking sweater.
It's just a stinking sweater. why do I let this eat me up like this?
Last year, Sam went through a phase where she pulled her hair out. in chunks - at night - in bed. She literally had a bald spot on top of her head.
We adjusted her meds and she eventually stopped and the hair grew back.
What is going on in this child's head to lead her to such behaviours?
Is she nervous about something. Has someone hurt her?
WHAT IS IT??
And what am I supposed to do about it?
until I figure this out - will keep the sewing kit handy.
Know anyone that knits?
Thursday, December 20, 2007
Tuesday, December 4, 2007
MUST HAVE book...
I found a newly published book specifically for the parents of children with speech and language problems - by the parent of TWO apraxic children.
The Parent's Guide to Speech And Language Problems by Debbie Feit with Heidi M. Feldman, M.D., PH.D.
I wish it has been published when Sam was initially diagnosed. It's got some really GREAT material in it - though most of it I know or have already experienced. I have a TBF degree - Trial By Fire.
I disagree with Ms. Feit only on one point. And I concede that my view may be unrealistic. I have said to write off public education as an option for your apraxic child. Ms. Felt gives direction on how to wade through the public education mire. I tried that route and realized (not soon enough) that public education would not work for Sam.
As I mentioned, Ms. Feit has TWO apraxic children which makes her uniquely qualified to author this book and guide other parents. I admire and respect her tenacity and spirit.
If you are the parent of a child with a suspected language delay/disorder or have a child with a recent diagnosis - RUN, do not walk and buy this book. I found it here.
Again, I wish I had had a roadmap like this when Sam was first diagnosed.
The Parent's Guide to Speech And Language Problems by Debbie Feit with Heidi M. Feldman, M.D., PH.D.
I wish it has been published when Sam was initially diagnosed. It's got some really GREAT material in it - though most of it I know or have already experienced. I have a TBF degree - Trial By Fire.
I disagree with Ms. Feit only on one point. And I concede that my view may be unrealistic. I have said to write off public education as an option for your apraxic child. Ms. Felt gives direction on how to wade through the public education mire. I tried that route and realized (not soon enough) that public education would not work for Sam.
As I mentioned, Ms. Feit has TWO apraxic children which makes her uniquely qualified to author this book and guide other parents. I admire and respect her tenacity and spirit.
If you are the parent of a child with a suspected language delay/disorder or have a child with a recent diagnosis - RUN, do not walk and buy this book. I found it here.
Again, I wish I had had a roadmap like this when Sam was first diagnosed.
Thursday, November 15, 2007
Dear Parent of Apraxic Child
Since I began this blog I have had the privilege of receiving emails from parents with kids similar to my Sam. It is always so rewarding, fulfilling even, to find other parents with the same challenges and fears as mine.
my challenge, when contacted by other parents is to NOT be the fast-forward, tell-it-like-it-is, balls-to-the-walls, bossy-mother-type i tend to be. not every parent is where i am. not everyone has come to a place of acceptance with their child's diagnosis.
i have the very best of intentions when i respond to these parents, but i have always been a shoot-from-the-hip kinda gal. and not everyone wears Kevlar vests...
so i thought i would write one generic letter - to any and all parents with an apraxic child that might find their way to my blog - and if they can handle what i have to say here - out in the open - then i would love to hear from them via email (on my profile.)
so hear goes....
Dear Mom or Dad,
It really sucks to be you. There, we said it. If you think parenting a typical child is hard, you might want to sit down for the rest of this...
First, make sure your child's diagnosis of apraxia is accurate. The definitive diagnositic test for apraxia of speech is the Kaufman Praxis. Have it administered by an SLP that has done so at least ten times. (I had to INSIST Sam's public school purchase this test and administer it. The SLP was new and had never given the test. Sam has been retested several times since and I am confident of her diagnosis.)
Second, if your child has apraxia of speech, forget public school as you currently percieve it. I had the same thought you do - "If I can just get her ready for first grade."
Let that thought go right now. go ahead. exhale. I'll wait.
Sam attended a public preschool program for children with disabilities from 3 years old to 4 and a half years old. The teacher was exceptional. The speech therapist - young and new - but quite capable. In spite of competent, diligent teachers and an enthusiastic SLP, i consider this a year and a half lost for Sam.
You have NO TIME TO LOSE. if you get nothing else from this letter - realize that every day you spend with your child NOT in a program/therapy or the right program/therapy is a day gone forever. That is one more day he or she is behind his or her peers.
The hard truth - Public schools programs are not equipped to adequately help your child. Your child REQUIRES a communication emmersed education. Every single thing they do every single day must be centered around communication. This means being with a Speech Language Pathologist every day, all day. Yes, it's that serious.
Private speech therapy two and three times a week is nice. and you should do that, but it is the tip of a mammoth iceberg. And not just any speech therapist will do. Find one experienced with apraxic children.
How do you know if they have this experience? ASK THEM! and then ask them "How many apraxic kids they have worked with?" How successful were they with these kids? If the SLP tells you the kids were speaking clearly in a few weeks, months or even years - turn on your heels and leave them in the dust.
Third, be prepared to spend your life savings to help your child. No, I am not fond of this point, but you might as well know up front that it is NOT going to be cheap to help your kid.
To pay for what our daughter needs, my hubby and I drive older vehicles. All were bought used (except for the jeep which we bought before Sam was born.) I shop at Thrift stores for our clothes. I never grocery shop without coupons and use a coupon mom website to make sure i am getting the best value for my money. we do not go on vacations. my hubby keeps the thermostat at unreasonable temperatures through out the year to cut on our cooling and heating bills. (this makes me crazy) We forgo all the latest techno toys and gadgets. Our one TV is 13 years old. And we will not have a new one until this one DIES. We don't have cable or dish - only the local networks at our house.
THIS IS WHAT IT TAKES. Unless you are independently wealthy - prepare to sacrafice.
Fourth, when you make all these sacrafices and get your kid in a great program - your well meaning friends and family will tell you what good parents you are. how you are doing the right thing for your kid. don't believe them for a second. You cannot afford to become complacent and rest on your laurels. You should be questioning every single day if you are doing everything you can to help your child.
It's like worrying. Worry in and of itself gets you nowhere. It is completely unproductive. But if you worry and fret and gnash your teeth - you feel like you ARE doing something. it feels productive. but it's not.
Education and therapy for our children is VERY similar to this. We can do and go and do for them but if it is not with the right people at the right place at the right time - it is unproductive. but we feel like we are doing something.
Fifth, mourn. and don't be ashamed of this emotion when it washes over you. During your pregnancy, you hoped and prayed for a healthy child. Most mothers flat out expect a healthy typical child. I had pictured Sam in my day dreams since I was in my late teens. I knew her before she was ever formed and born. and in none of my dreams was she ever anything less than perfect.
So when you find you don't have a healthy, happy, typical child, there is a sense of loss. validate that loss. throw yourself one good, big pity-party, if need be. but don't wallow in it it, pick yourself up and and move forward.
People say to me all the time - "I don't know how you do it."
My constant refrain - "I don't do it well."
But the truth is - YOU DO IT. You will do whatever it takes to help your child live a normal, fulfilling, productive life.
Sixth, please don't tell me you don't live near an appropriate program. You are talking to a Mom that moved two states away from her husband with two young children WHILST pregnant with the third, moved in with her parents so her four year old apraxic daughter could attend a four day a week specialized program where the (walk-on-water phenominal) teacher was also an SLP.
And when I found out a new pilot program was starting in Dallas and that the class for my daughter's age group was already full - I BEGGED for them to make a spot for her. I begged.
and they did.
I am currently selling my family's 'dream country home' to move into a smaller "city home" in order to be closer to Sam's school.
Simply put - you do what you have to do.
Seventh, be prepared for more than apraxia of speech. There are often co-morbidities (the medical term for 'other bad stuff') with apraxic conditions. For example, Sam deals with ADHD, Dyslexia and BiPolar disorder in addition to her apraxia. Maybe your child will be fortunate and this will be the only diagnosis you have to deal with. But don't count on it.
Eight, prepare for battle. Uphill, in a hailstorm, unarmed and out-manned.
it won't get easier for a long time. you are in this for the long haul. but you must be prepared to lead the charge for your child and your family. not only must you be the very best advocate you possibly can for her(him) - you are required to back up what you say and what you plan with WHAT YOU DO.
Finally, You are not alone.
This does not have to be a solitary journey. Lean on friends and family. Reach out to other parents (like me) that have kids in similar situations. Keep your house in order - which thankfully is not the same thing as cleaning your house.
I mean nurture yourself. Pray, if you are a Believer. Or meditate. Find a way to feed your soul. Take care of your marriage. Eat right. Get enough sleep. Read for fun. Focus on the positive. Your role as a parent has never been more important than it is right now for your apraxic child. You have got to be on your game.
Apraxia is not 'cured' in a year or two or ten. Accept that. And get moving.
Time is your enemy. It robs our kids of progress. Every day they are further behind their peers. Every day is a struggle to catch up.
Our children do not get a single minute back. Speech will NOT just happen for these kids. They won't "talk when they are ready."
Your child has a neurological disorder.
Not a speech impediment.
Accept it.
Accept them.
And then get a move on.
There is work to be done.
With love and respect,
t_cole
my challenge, when contacted by other parents is to NOT be the fast-forward, tell-it-like-it-is, balls-to-the-walls, bossy-mother-type i tend to be. not every parent is where i am. not everyone has come to a place of acceptance with their child's diagnosis.
i have the very best of intentions when i respond to these parents, but i have always been a shoot-from-the-hip kinda gal. and not everyone wears Kevlar vests...
so i thought i would write one generic letter - to any and all parents with an apraxic child that might find their way to my blog - and if they can handle what i have to say here - out in the open - then i would love to hear from them via email (on my profile.)
so hear goes....
Dear Mom or Dad,
It really sucks to be you. There, we said it. If you think parenting a typical child is hard, you might want to sit down for the rest of this...
First, make sure your child's diagnosis of apraxia is accurate. The definitive diagnositic test for apraxia of speech is the Kaufman Praxis. Have it administered by an SLP that has done so at least ten times. (I had to INSIST Sam's public school purchase this test and administer it. The SLP was new and had never given the test. Sam has been retested several times since and I am confident of her diagnosis.)
Second, if your child has apraxia of speech, forget public school as you currently percieve it. I had the same thought you do - "If I can just get her ready for first grade."
Let that thought go right now. go ahead. exhale. I'll wait.
Sam attended a public preschool program for children with disabilities from 3 years old to 4 and a half years old. The teacher was exceptional. The speech therapist - young and new - but quite capable. In spite of competent, diligent teachers and an enthusiastic SLP, i consider this a year and a half lost for Sam.
You have NO TIME TO LOSE. if you get nothing else from this letter - realize that every day you spend with your child NOT in a program/therapy or the right program/therapy is a day gone forever. That is one more day he or she is behind his or her peers.
The hard truth - Public schools programs are not equipped to adequately help your child. Your child REQUIRES a communication emmersed education. Every single thing they do every single day must be centered around communication. This means being with a Speech Language Pathologist every day, all day. Yes, it's that serious.
Private speech therapy two and three times a week is nice. and you should do that, but it is the tip of a mammoth iceberg. And not just any speech therapist will do. Find one experienced with apraxic children.
How do you know if they have this experience? ASK THEM! and then ask them "How many apraxic kids they have worked with?" How successful were they with these kids? If the SLP tells you the kids were speaking clearly in a few weeks, months or even years - turn on your heels and leave them in the dust.
Third, be prepared to spend your life savings to help your child. No, I am not fond of this point, but you might as well know up front that it is NOT going to be cheap to help your kid.
To pay for what our daughter needs, my hubby and I drive older vehicles. All were bought used (except for the jeep which we bought before Sam was born.) I shop at Thrift stores for our clothes. I never grocery shop without coupons and use a coupon mom website to make sure i am getting the best value for my money. we do not go on vacations. my hubby keeps the thermostat at unreasonable temperatures through out the year to cut on our cooling and heating bills. (this makes me crazy) We forgo all the latest techno toys and gadgets. Our one TV is 13 years old. And we will not have a new one until this one DIES. We don't have cable or dish - only the local networks at our house.
THIS IS WHAT IT TAKES. Unless you are independently wealthy - prepare to sacrafice.
Fourth, when you make all these sacrafices and get your kid in a great program - your well meaning friends and family will tell you what good parents you are. how you are doing the right thing for your kid. don't believe them for a second. You cannot afford to become complacent and rest on your laurels. You should be questioning every single day if you are doing everything you can to help your child.
It's like worrying. Worry in and of itself gets you nowhere. It is completely unproductive. But if you worry and fret and gnash your teeth - you feel like you ARE doing something. it feels productive. but it's not.
Education and therapy for our children is VERY similar to this. We can do and go and do for them but if it is not with the right people at the right place at the right time - it is unproductive. but we feel like we are doing something.
Fifth, mourn. and don't be ashamed of this emotion when it washes over you. During your pregnancy, you hoped and prayed for a healthy child. Most mothers flat out expect a healthy typical child. I had pictured Sam in my day dreams since I was in my late teens. I knew her before she was ever formed and born. and in none of my dreams was she ever anything less than perfect.
So when you find you don't have a healthy, happy, typical child, there is a sense of loss. validate that loss. throw yourself one good, big pity-party, if need be. but don't wallow in it it, pick yourself up and and move forward.
People say to me all the time - "I don't know how you do it."
My constant refrain - "I don't do it well."
But the truth is - YOU DO IT. You will do whatever it takes to help your child live a normal, fulfilling, productive life.
Sixth, please don't tell me you don't live near an appropriate program. You are talking to a Mom that moved two states away from her husband with two young children WHILST pregnant with the third, moved in with her parents so her four year old apraxic daughter could attend a four day a week specialized program where the (walk-on-water phenominal) teacher was also an SLP.
And when I found out a new pilot program was starting in Dallas and that the class for my daughter's age group was already full - I BEGGED for them to make a spot for her. I begged.
and they did.
I am currently selling my family's 'dream country home' to move into a smaller "city home" in order to be closer to Sam's school.
Simply put - you do what you have to do.
Seventh, be prepared for more than apraxia of speech. There are often co-morbidities (the medical term for 'other bad stuff') with apraxic conditions. For example, Sam deals with ADHD, Dyslexia and BiPolar disorder in addition to her apraxia. Maybe your child will be fortunate and this will be the only diagnosis you have to deal with. But don't count on it.
Eight, prepare for battle. Uphill, in a hailstorm, unarmed and out-manned.
it won't get easier for a long time. you are in this for the long haul. but you must be prepared to lead the charge for your child and your family. not only must you be the very best advocate you possibly can for her(him) - you are required to back up what you say and what you plan with WHAT YOU DO.
Finally, You are not alone.
This does not have to be a solitary journey. Lean on friends and family. Reach out to other parents (like me) that have kids in similar situations. Keep your house in order - which thankfully is not the same thing as cleaning your house.
I mean nurture yourself. Pray, if you are a Believer. Or meditate. Find a way to feed your soul. Take care of your marriage. Eat right. Get enough sleep. Read for fun. Focus on the positive. Your role as a parent has never been more important than it is right now for your apraxic child. You have got to be on your game.
Apraxia is not 'cured' in a year or two or ten. Accept that. And get moving.
Time is your enemy. It robs our kids of progress. Every day they are further behind their peers. Every day is a struggle to catch up.
Our children do not get a single minute back. Speech will NOT just happen for these kids. They won't "talk when they are ready."
Your child has a neurological disorder.
Not a speech impediment.
Accept it.
Accept them.
And then get a move on.
There is work to be done.
With love and respect,
t_cole
Wednesday, October 24, 2007
still in question
i just got home from a parent - principal meeting for Savvy.
and i feel some better.
but not so good as to rule out there is not a learning difference for her.
we have some specific interventions planned for her and will meet again in six weeks to evaluate her progress.
that's good.
the dyslexia coordinator thanked me for being such a proactive, concerned parent.
i told them it really irked me when parents won't advocate for their kids.
and then the principal (who is not one of my most favorite people) tells me that a lot of parents advocate for their kids.
they just aren't willing to put their shoulder to the grindstone and follow through.
i'm a shoulder to the grindstone type mom.
not bragging.
just the way i am.
how i was raised.
i put an extremely high premium on education and learning.
i value exceptional teachers above almost all else.
everyone in my immediate family has a college degree. my mom has several. We all love to read and learn. We do not have stagnant minds.
thank God I have my mom and the rest of my support network. Mom sends me articles, gives me advice, encourages me, pushes me (usually in the right direction), and she has always valued education.
she told me many years ago that "education is the equalizer."
not position. not wealth. not pedigree.
education. regardless of the rest, if you have a solid education and a love of learning, you can overcome a crappy upbringing, abject poverty, low social position and just about any prejudice.
and i think she's right.
i guess that's why i fight so dang hard for my kids.
i fail miserably in several aspects of being a mother. no, really, i do.
but i figure i can make up for a lot by assuring that my kids get the absolute very best education they can - while at the same time, loving it. i wish to instill in them a passion for learning as well as an appreciation of creativity.
i have to light the fire and stoke it for years to come. that is my job.
and my job here will be done only when i am not the one pushing them through their education. i will be done when they step out on their own with a deep abiding hunger to learn, experience, and do more.
and i feel some better.
but not so good as to rule out there is not a learning difference for her.
we have some specific interventions planned for her and will meet again in six weeks to evaluate her progress.
that's good.
the dyslexia coordinator thanked me for being such a proactive, concerned parent.
i told them it really irked me when parents won't advocate for their kids.
and then the principal (who is not one of my most favorite people) tells me that a lot of parents advocate for their kids.
they just aren't willing to put their shoulder to the grindstone and follow through.
i'm a shoulder to the grindstone type mom.
not bragging.
just the way i am.
how i was raised.
i put an extremely high premium on education and learning.
i value exceptional teachers above almost all else.
everyone in my immediate family has a college degree. my mom has several. We all love to read and learn. We do not have stagnant minds.
thank God I have my mom and the rest of my support network. Mom sends me articles, gives me advice, encourages me, pushes me (usually in the right direction), and she has always valued education.
she told me many years ago that "education is the equalizer."
not position. not wealth. not pedigree.
education. regardless of the rest, if you have a solid education and a love of learning, you can overcome a crappy upbringing, abject poverty, low social position and just about any prejudice.
and i think she's right.
i guess that's why i fight so dang hard for my kids.
i fail miserably in several aspects of being a mother. no, really, i do.
but i figure i can make up for a lot by assuring that my kids get the absolute very best education they can - while at the same time, loving it. i wish to instill in them a passion for learning as well as an appreciation of creativity.
i have to light the fire and stoke it for years to come. that is my job.
and my job here will be done only when i am not the one pushing them through their education. i will be done when they step out on their own with a deep abiding hunger to learn, experience, and do more.
Monday, September 17, 2007
i hope i'm wrong
i have a new mantra.
i hope i'm wrong
running through my head.
along the same lines of the little engine that could (I think I can.I think I can.)
i hope i'm wrong
my second child, Savvy, concerns me.
her reading skills are not where i think they should be.
i hope i'm wrong
and i notice her compensating.
by this i mean - she 'reads' books by memorizing the words the first time she struggles through it and from then on, uses the pictures as cues to the text.
i hope i'm wrong
which does indicate she is intelligent - but it does not mean she can read.
i hope i'm wrong
so i have requested a literacy evaluation from her public school.
i requested a dyslexia evaluation last year that was never done. (don't get me started)
requested one again this year, in writing.
had my pediatrician give me a referral to Scottish Rite for their dyslexia eval.
Looking into a few other options for testing as well.
i hope i'm wrong
i hope i'm wrong
i hope i'm wrong
i hope i'm wrong
running through my head.
along the same lines of the little engine that could (I think I can.I think I can.)
i hope i'm wrong
my second child, Savvy, concerns me.
her reading skills are not where i think they should be.
i hope i'm wrong
and i notice her compensating.
by this i mean - she 'reads' books by memorizing the words the first time she struggles through it and from then on, uses the pictures as cues to the text.
i hope i'm wrong
which does indicate she is intelligent - but it does not mean she can read.
i hope i'm wrong
so i have requested a literacy evaluation from her public school.
i requested a dyslexia evaluation last year that was never done. (don't get me started)
requested one again this year, in writing.
had my pediatrician give me a referral to Scottish Rite for their dyslexia eval.
Looking into a few other options for testing as well.
i hope i'm wrong
i hope i'm wrong
i hope i'm wrong
Wednesday, September 12, 2007
sometimes, i am sad...
last night we went to a PTO meeting at savvy's school. she is in first grade and each grade was singing a few songs prior to the meeting. a sure fire way to get the parents to the PTO meetings.
so there was Kindergarten - and they were adorable...
and then first grade - and savvy was the star (who are we kidding? i am her mom. i am biased. end of discussion.)
followed by second grade. still cute kids - doing their thing.
and then hubby leans over and asks - is this Sam's age group?
and i stop to think for a sec. and say no. she would be in third grade if she were mainstreamed (normal).
shelton qualifies her as second grade - which is a GOOD thing - because it gives her at least one extra year there.
but if she were mainstreamed (normal), she would be in the third grade.
and they were up next. the third graders.
and i tried to picture Sam up there. with those pretty little girls and cute little boys. i tried to wrap my mind around the fact that those children are her contemporaries - age wise.
but she is not their peer. not in maturity, speech or ability.
and while i most often try to focus on what she CAN do and what she HAS learned and how much progress she HAS made, every now and then i am reminded of where she SHOULD be.
and sometimes, it makes me sad...
so there was Kindergarten - and they were adorable...
and then first grade - and savvy was the star (who are we kidding? i am her mom. i am biased. end of discussion.)
followed by second grade. still cute kids - doing their thing.
and then hubby leans over and asks - is this Sam's age group?
and i stop to think for a sec. and say no. she would be in third grade if she were mainstreamed (normal).
shelton qualifies her as second grade - which is a GOOD thing - because it gives her at least one extra year there.
but if she were mainstreamed (normal), she would be in the third grade.
and they were up next. the third graders.
and i tried to picture Sam up there. with those pretty little girls and cute little boys. i tried to wrap my mind around the fact that those children are her contemporaries - age wise.
but she is not their peer. not in maturity, speech or ability.
and while i most often try to focus on what she CAN do and what she HAS learned and how much progress she HAS made, every now and then i am reminded of where she SHOULD be.
and sometimes, it makes me sad...
Thursday, September 6, 2007
the birds & the bees & the flowers & the trees...
i am preparing myself for The Talk
with my girls.
bought The Book
for The Talk
with my girls.
it's time. they are both curiouser and curiouser.
i just remember when my mom had The Talk with me and we read The Books - it changed EVERYTHING.
i didn't look at two people the same ever again.
ever.
i hate to change their world like that.
but it's time.
my other concern - when my mom had The Talk with me - i promptly went to school and had The Talk with all my classmates. ask anyone i was in third grade with "who told you where babies come from" and they will tell you - without skipping a beat - t_cole. they still tease me about this. i like to remind them that some of them had me tell them twice...
anywho - i have no doubt - no doubt at all that my girls will go to school and do the exact same thing. so i have given both of their teachers a 'heads up.'
i just hope i handle this as well as my mom did. she was awesome. she opened a dialog on sex and never closed it or shied away from it. ever. i could ask her anything. and did. and she answered it. and i think because of the way she handled it - i have a healthier attitude than most about sexuality and my body.
i simply want to do a good job on this. it's a big deal. this is knowledge that will impact the rest of their lives. not just the context of the message delivered, but how the information is shared by me and even the attitude inferred about the imparted information.
so much pressure.
wish me luck!
with my girls.
bought The Book
for The Talk
with my girls.
it's time. they are both curiouser and curiouser.
i just remember when my mom had The Talk with me and we read The Books - it changed EVERYTHING.
i didn't look at two people the same ever again.
ever.
i hate to change their world like that.
but it's time.
my other concern - when my mom had The Talk with me - i promptly went to school and had The Talk with all my classmates. ask anyone i was in third grade with "who told you where babies come from" and they will tell you - without skipping a beat - t_cole. they still tease me about this. i like to remind them that some of them had me tell them twice...
anywho - i have no doubt - no doubt at all that my girls will go to school and do the exact same thing. so i have given both of their teachers a 'heads up.'
i just hope i handle this as well as my mom did. she was awesome. she opened a dialog on sex and never closed it or shied away from it. ever. i could ask her anything. and did. and she answered it. and i think because of the way she handled it - i have a healthier attitude than most about sexuality and my body.
i simply want to do a good job on this. it's a big deal. this is knowledge that will impact the rest of their lives. not just the context of the message delivered, but how the information is shared by me and even the attitude inferred about the imparted information.
so much pressure.
wish me luck!
Tuesday, September 4, 2007
testing... .1.2.3. testing...
received an envelope in the mail late last week from Sam's school.
figured it was some start of school info.
it was her test results from last year. due to the nature of the program she is in and how this program is part of a study - they do extensive testing of all the students each year. So at this point, at the end of her third year, we have four testing periods to compare. Admission tests, (Sept 04), end of first year (Jul 05), end of second year (Apr 06) and end of third year (Apr 07).
and one would hope that each of the test results/scores would increase (where appropriate).
but with the nature of Sam's challenges, that is not the case.
and every time i see my daughter quantified on paper, it breaks my heart.
i HATE it.
her last test period - Apr 07 - her scores went down - across the board. some of these most recent scores are even lower than her admission test scores.
how can that be?
is she getting worse?
absolutely not.
dammit.
last year she learned how to read and write.
it was one of her very best years at Shelton.
so why the decline in scores?
i have my theories and believe it is a combination of things.
one, with kids like Sam, the scores are really hard to increase b/c they get older each year. when the testing is scored - they have to take into consideration the increasing age of the child. so as she ages, her measurable ability has to exceed her aging. that simply is not going to be the case with Sam.
second, her teacher and slp told me that at the end of last year, sam really dropped off - on effort put forth as well as her ability to attend to her tasks. that she just lost her momentum.
finally - the end of her school year was a horrible time for me personally. emotionally, spiritually, physically, mentally. you name it - the first part of this year sucked raw eggs in my life. i fear my angst spilled over into her life.
and it had been an intense year. Sam was learning to read, vastly improving her writing skills, speech drills and we spent several months adjusting her medications to increase her focus during school hours.
i think by the time April and testing came around, she was simply just wore out. and unfortunately her fatigue is reflected in her test scores.
i live with this child. she did not regress last year - not by any stretch of the imagination. she made huge gains. people have told me recently - her doctors, sunday school teachers, friends - that they can understand her so much better lately.
but it just pains me to see it on paper. the declining scores.
i hate the numbers attached to my flesh and blood child.
i hate the words attached to my flesh and blood child.
ADHD
DYSLEXIA
APRAXIA
BIPOLAR DISORDER
i hate them all.
and i want them to leave her the hell alone.
i am reminded of a scene from one of my most favorite movies, Aliens.
at the end of the movie, sigourney weaver's character is defending the young girl from the Queen Alien. She puts on her armour, turns - all hot, pissed, sweaty & maternal - and screams, "GET AWAY FROM HER YOU BITCH!"
THAT'S exactly how i feel toward this faceless, inanimate enemy.
figured it was some start of school info.
it was her test results from last year. due to the nature of the program she is in and how this program is part of a study - they do extensive testing of all the students each year. So at this point, at the end of her third year, we have four testing periods to compare. Admission tests, (Sept 04), end of first year (Jul 05), end of second year (Apr 06) and end of third year (Apr 07).
and one would hope that each of the test results/scores would increase (where appropriate).
but with the nature of Sam's challenges, that is not the case.
and every time i see my daughter quantified on paper, it breaks my heart.
i HATE it.
her last test period - Apr 07 - her scores went down - across the board. some of these most recent scores are even lower than her admission test scores.
how can that be?
is she getting worse?
absolutely not.
dammit.
last year she learned how to read and write.
it was one of her very best years at Shelton.
so why the decline in scores?
i have my theories and believe it is a combination of things.
one, with kids like Sam, the scores are really hard to increase b/c they get older each year. when the testing is scored - they have to take into consideration the increasing age of the child. so as she ages, her measurable ability has to exceed her aging. that simply is not going to be the case with Sam.
second, her teacher and slp told me that at the end of last year, sam really dropped off - on effort put forth as well as her ability to attend to her tasks. that she just lost her momentum.
finally - the end of her school year was a horrible time for me personally. emotionally, spiritually, physically, mentally. you name it - the first part of this year sucked raw eggs in my life. i fear my angst spilled over into her life.
and it had been an intense year. Sam was learning to read, vastly improving her writing skills, speech drills and we spent several months adjusting her medications to increase her focus during school hours.
i think by the time April and testing came around, she was simply just wore out. and unfortunately her fatigue is reflected in her test scores.
i live with this child. she did not regress last year - not by any stretch of the imagination. she made huge gains. people have told me recently - her doctors, sunday school teachers, friends - that they can understand her so much better lately.
but it just pains me to see it on paper. the declining scores.
i hate the numbers attached to my flesh and blood child.
i hate the words attached to my flesh and blood child.
ADHD
DYSLEXIA
APRAXIA
BIPOLAR DISORDER
i hate them all.
and i want them to leave her the hell alone.
i am reminded of a scene from one of my most favorite movies, Aliens.
at the end of the movie, sigourney weaver's character is defending the young girl from the Queen Alien. She puts on her armour, turns - all hot, pissed, sweaty & maternal - and screams, "GET AWAY FROM HER YOU BITCH!"
THAT'S exactly how i feel toward this faceless, inanimate enemy.
Sunday, August 26, 2007
back to school
tomorrow is my most favorite day of the year.
better than Christmas and my birthday. combined.
all the kids go back to school.
and our house is a cauldron of swirling emotions today.
the kids are excited, dreadful and anxious.
and i share the sentiment.
i am THRILLED they are going back to school.
though i dread having to get up earlier...
do battle to get them out of bed, dressed, fed, brushed and lunches packed.
and this week - of all weeks - a double whammy to scheduling...
hubby has been told - due to a upcoming special event - to expect to put in lots of extra hours.
and my mother in law is having a rather serious medical procedure tomorrow and i have a demo first thing in the morning.
so that puts me squarely on the front line this week. unarmed.
might as well just jump in with both feet and hope to goodness i float...
took sam by to meet her new teacher and slp on friday. she asked me no less than 50 times why she has a new teacher. why does she have a new class? who are her friends in this class?
and thank GAWD there are friends in this class - and it just so happens that these friends belong to two of my favorite mothers.
(little blessings)
i feel for her - the anxiety of starting the year with a new teacher. she had such a GREAT year last year with her previous teacher and slp. and the good news is that she will likely have them again for the next two years.
but for now, she is anxious and excited.
sister and brother are the same.
brand new backs packs are lined up by the dining room table stuffed with all new school supplies.
shiny clean lunch boxes laid out on the kitchen counter.
clean clothes laid out in each child's room for tomorrow.
everyone has new shoes for the first day - new outfits too.
i am already tired just thinking about the upcoming week.
wish us luck!
better than Christmas and my birthday. combined.
all the kids go back to school.
and our house is a cauldron of swirling emotions today.
the kids are excited, dreadful and anxious.
and i share the sentiment.
i am THRILLED they are going back to school.
though i dread having to get up earlier...
do battle to get them out of bed, dressed, fed, brushed and lunches packed.
and this week - of all weeks - a double whammy to scheduling...
hubby has been told - due to a upcoming special event - to expect to put in lots of extra hours.
and my mother in law is having a rather serious medical procedure tomorrow and i have a demo first thing in the morning.
so that puts me squarely on the front line this week. unarmed.
might as well just jump in with both feet and hope to goodness i float...
took sam by to meet her new teacher and slp on friday. she asked me no less than 50 times why she has a new teacher. why does she have a new class? who are her friends in this class?
and thank GAWD there are friends in this class - and it just so happens that these friends belong to two of my favorite mothers.
(little blessings)
i feel for her - the anxiety of starting the year with a new teacher. she had such a GREAT year last year with her previous teacher and slp. and the good news is that she will likely have them again for the next two years.
but for now, she is anxious and excited.
sister and brother are the same.
brand new backs packs are lined up by the dining room table stuffed with all new school supplies.
shiny clean lunch boxes laid out on the kitchen counter.
clean clothes laid out in each child's room for tomorrow.
everyone has new shoes for the first day - new outfits too.
i am already tired just thinking about the upcoming week.
wish us luck!
Friday, August 24, 2007
and therapy for all
had an appointment with my psychiatrist yesterday.
first time in close to 6 months i have gone in to see him.
and this time only b/c i needed a refill on my Wellbutrin.
so he asks why so long between visits?
and i tell him that i have not had three kids in the house since the end of March.
wow!
April, May, June, July and now August.
one of my three has been out of the house.
and in that time, my need for medication has diminished greatly.
that does not make me feel very good as a mom.
and i tell him this.
i explain that this does not meet my definition of an effective mom.
and i feel like i cannot handle my three kids at the same time.
he asks if this is true - that i can't handle them all at the same time.
and i think about it.
and i respond - no, i can handle them.
just not well.
and he asks me if that's probably not normal, given the dynamics of our family - that most people would find this a challenge.
and i think about it. and i tell him that i'd like to think that most people would find this a challenge.
i want to believe this.
i just keep thinking that i should be doing this so much better than i actually am.
i remember something my realtor told me. and i related her comments to my shrink.
my realtor and i were going through all the tasks required for us to sell a house, move, financing, buy a house, new school for the kids, et al.
she tells me, "t_cole, i hope one day Sam appreciates everything you have done for her."
without thinking, i replied, "i hope she never knows."
i went on to explain to her (and my shrink) that i don't want sam to ever carry that burden - that we changed our whole family life to accommodate her education, doctors and therapy. i don't want her siblings to know either. they may figure it out on their own - but they won't ever hear it from me directly.
i continued by saying this is what parents do when their kids have a need such as Sam's.
you simply do whatever it takes to provide appropriate care/education/therapy for your child. period.
my shrink tells me he wishes more parents thought like this - that he wouldn't have so many kids as patients.
that's nice to hear.
but i tell him - "make no mistake, my kids will very likely end up in therapy before it's all said and done."
we agree the predicted therapy will be due to the dynamics of our family and not due to lack of parenting...
but still, i question, constantly, my parenting abilities. and i will continue to wonder if it is my parenting or just the nature of our family that will send all three of my kids screaming into a therapist's office one day.
first time in close to 6 months i have gone in to see him.
and this time only b/c i needed a refill on my Wellbutrin.
so he asks why so long between visits?
and i tell him that i have not had three kids in the house since the end of March.
wow!
April, May, June, July and now August.
one of my three has been out of the house.
and in that time, my need for medication has diminished greatly.
that does not make me feel very good as a mom.
and i tell him this.
i explain that this does not meet my definition of an effective mom.
and i feel like i cannot handle my three kids at the same time.
he asks if this is true - that i can't handle them all at the same time.
and i think about it.
and i respond - no, i can handle them.
just not well.
and he asks me if that's probably not normal, given the dynamics of our family - that most people would find this a challenge.
and i think about it. and i tell him that i'd like to think that most people would find this a challenge.
i want to believe this.
i just keep thinking that i should be doing this so much better than i actually am.
i remember something my realtor told me. and i related her comments to my shrink.
my realtor and i were going through all the tasks required for us to sell a house, move, financing, buy a house, new school for the kids, et al.
she tells me, "t_cole, i hope one day Sam appreciates everything you have done for her."
without thinking, i replied, "i hope she never knows."
i went on to explain to her (and my shrink) that i don't want sam to ever carry that burden - that we changed our whole family life to accommodate her education, doctors and therapy. i don't want her siblings to know either. they may figure it out on their own - but they won't ever hear it from me directly.
i continued by saying this is what parents do when their kids have a need such as Sam's.
you simply do whatever it takes to provide appropriate care/education/therapy for your child. period.
my shrink tells me he wishes more parents thought like this - that he wouldn't have so many kids as patients.
that's nice to hear.
but i tell him - "make no mistake, my kids will very likely end up in therapy before it's all said and done."
we agree the predicted therapy will be due to the dynamics of our family and not due to lack of parenting...
but still, i question, constantly, my parenting abilities. and i will continue to wonder if it is my parenting or just the nature of our family that will send all three of my kids screaming into a therapist's office one day.
Wednesday, August 8, 2007
what birth order?
one of the things i have been grappling with lately is that the birth order of my three kids is really messed up. Sam is the oldest at 8, then Savvy is 6 and Smith is 3.
Sam is noticeably immature for her age. this has been attributed to the ADHD and perhaps even the head injury. but more likely, the ADHD as this is not an uncommon trait of ADHD kids.
and Savvy is perhaps a bit more mature than children her own age. and she holds the uncoveted position of middle child in our family. and with that, comes its own ball of wax.
Smith is simply a three year old boy. also the baby. and that's not a bad place to be.
i feel deeply for the girls and the confusion they have in their birth order. Savvy certainly has the middle child syndrome working. poor pitiful me - everyone gets more attention than i do so i must act out. and in many ways, she is absolutely correct.
but even though Savvy is younger than Sam, she is far and away more mature. so i try and talk to her. and explain in the simplest terms possible that although she is not the oldest, she should try and act like the oldest. i cannot find the words to properly explain this to a six year old. even a mature six year old. and i desperately need her to understand.
and a part of me needs for Savvy to forgive me as well. i don't like having to ask a six year old to step up and in a sense, grow up. it's not fair.
NONE of this is fair. but our family dynamic is what it is.
and we all have to make the best of it - even if you are a innocent six year old girl...
Sam is noticeably immature for her age. this has been attributed to the ADHD and perhaps even the head injury. but more likely, the ADHD as this is not an uncommon trait of ADHD kids.
and Savvy is perhaps a bit more mature than children her own age. and she holds the uncoveted position of middle child in our family. and with that, comes its own ball of wax.
Smith is simply a three year old boy. also the baby. and that's not a bad place to be.
i feel deeply for the girls and the confusion they have in their birth order. Savvy certainly has the middle child syndrome working. poor pitiful me - everyone gets more attention than i do so i must act out. and in many ways, she is absolutely correct.
but even though Savvy is younger than Sam, she is far and away more mature. so i try and talk to her. and explain in the simplest terms possible that although she is not the oldest, she should try and act like the oldest. i cannot find the words to properly explain this to a six year old. even a mature six year old. and i desperately need her to understand.
and a part of me needs for Savvy to forgive me as well. i don't like having to ask a six year old to step up and in a sense, grow up. it's not fair.
NONE of this is fair. but our family dynamic is what it is.
and we all have to make the best of it - even if you are a innocent six year old girl...
Monday, August 6, 2007
The June Shelton School
the june shelton school sits on the corner of arapahoe and hillcrest in the building that once housed the prestonwood baptist church. every single time i drive up to that building i am overwhelmed with gratitude.
how can i not be?
and we pay it gladly and with a grateful heart.
were it not for the shelton school, sam would not have the slightest chance at a normal life.
shelton is a private school. one of the most expensive in Dallas/Ft. Worth. as well as one of (if not) the best. we have been hugely fortunate in that sam has received scholarships from them each year. the shelton staff is phenomenal. there are none better, of this i am certain.
sam receives regular testing, daily speech therapy, weekly occupational therapy, physical therapy along with all the trappings of a typical education - music, PE, library time and drama.
they use a modified montessori methodology in the classroom so learning is largely student directed.
sam is participating in what started as a pilot early intervention program at shelton. on a private grant. small classes for children with learning differences AND speech challenges. so not all classes at shelton offer a speech therapist AND a teacher. only those classes participating in this program. there is rigorous testing annually to monitor the progress of these students.
i know this pilot program at shelton is being scrutinized by other schools across the nation and beyond. i know that the shelton administration has presented findings on this program at national and international speech and language conferences.
and still, i am not an apraxia expert. i don't have to be.
i live with it every day.
i don't read all the literature out there - as i once did.
when we finally had a diagnosis, i did my homework.
i asked the questions. i listened and and begged.
and sam started at shelton. and i have never, once, looked back.
for any quality of life that sam achieves, we owe gratitude and credit to the june shelton school.
how can i not be?
david and i speculate that we have spent more money on the last four years of Sam's education and therapy than we did on both of our college educations combined. and it has been worth every single penny. we estimate that we will spend in excess of $100K by the time she graduates from 12th grade.
and we pay it gladly and with a grateful heart.
were it not for the shelton school, sam would not have the slightest chance at a normal life.
shelton is a private school. one of the most expensive in Dallas/Ft. Worth. as well as one of (if not) the best. we have been hugely fortunate in that sam has received scholarships from them each year. the shelton staff is phenomenal. there are none better, of this i am certain.
sam receives regular testing, daily speech therapy, weekly occupational therapy, physical therapy along with all the trappings of a typical education - music, PE, library time and drama.
they use a modified montessori methodology in the classroom so learning is largely student directed.
sam is participating in what started as a pilot early intervention program at shelton. on a private grant. small classes for children with learning differences AND speech challenges. so not all classes at shelton offer a speech therapist AND a teacher. only those classes participating in this program. there is rigorous testing annually to monitor the progress of these students.
i know this pilot program at shelton is being scrutinized by other schools across the nation and beyond. i know that the shelton administration has presented findings on this program at national and international speech and language conferences.
and still, i am not an apraxia expert. i don't have to be.
i live with it every day.
i don't read all the literature out there - as i once did.
when we finally had a diagnosis, i did my homework.
i asked the questions. i listened and and begged.
and sam started at shelton. and i have never, once, looked back.
for any quality of life that sam achieves, we owe gratitude and credit to the june shelton school.
historically speaking
when sam was two years old, my pediatrician referred us to my county's early childhood intervention program because she was not saying as many words as she should. sam was evaluated by ECI specialist and they determined she did indeed have a speech delay.
previous to this, she hit all of her developmental milestones within normal ranges - but at the late end of those ranges.
at ten months of age, she had a closed skull injury. a hair line fracture.
after the diagnosis at two years, the early childhood intervention program in our county came to our home and worked with her twice a week.
at that time, i sincerely believed we would have her up to speed and ready for first grade on time.
after a year of ECI, she went to a PPCD program in a public school. for a year and a half. She had a very good teacher there and a new but enthusiastic speech therapist. her speech made no measurable improvement in that year.
it was then i realized i would have to take her education and speech therapy into my own hands. started doing research. talking to people. asking more questions.
insisted that the public school purchase the Kaufmann Praxis test to determine if Sam was apraxic. They finally did buy the test kit and administered it to her. The results showed a very high likelihood of apraxia of speech. She was still just a bit too young for an official diagnosis.
my research led me to the conclusion that she would require an education driven by her speech requirements. There was no such education to be found in the Dallas area. The nearest program that offered a communication immersed education was in Mississippi at The Dubard School. (see links) she was too young for Dubard still. but i was told to check out their Children's Center for Communication & Development. both on the campus of the university of southern mississippi. my Alma Mater.
we made the snap decision to drive over for the weekend and interview there. sam was accepted to the program that day. a week later, my two daughters and i moved to mississippi for the school year. i was pregnant with my son. we lived with my parents for the year while my husband stayed here in texas to work and hold down the fort.
we had finally made the decision to move to mississippi so we could keep Sam at the Children's Center another year and then hopefully to have her accepted into Dubard (they have a two year waiting list). She was making noticeable progress for the first time ever.
while house shopping in Mississippi, i was on the phone with one of my speech resources in dallas. she told me about a new pilot program for speech delayed kids at the Shelton School. i hung up with her, and called Shelton only to be told that yes, they did have a new program but that the class for Sam's age group was already filled.
i begged. and pleaded. and told them what we were willing to do for our daughter. PLEASE would they consider making a spot for her. They agreed to consider it if i would send them all of her educational and medical records asap. i copied them that day and overnighted the 10 lb. package to them.
a week later they called to let us know they had reviewed her file and were going to make a place for her.
my family could return to texas.
that summer, she attended a fantastic program at the Callier Center in Richardson.
and in the fall, she started at shelton. her class has a speech therapist and a teacher. both trained in the Association Method.
fall 2008 will be the start of her fourth year there.
along the way, we have also added the diagnosis of ADHD, Dyslexia and Bipolar Disorder. in addition, her teachers tell me she exhibits the characteristics of a child with a brain injury.
previous to this, she hit all of her developmental milestones within normal ranges - but at the late end of those ranges.
at ten months of age, she had a closed skull injury. a hair line fracture.
after the diagnosis at two years, the early childhood intervention program in our county came to our home and worked with her twice a week.
at that time, i sincerely believed we would have her up to speed and ready for first grade on time.
after a year of ECI, she went to a PPCD program in a public school. for a year and a half. She had a very good teacher there and a new but enthusiastic speech therapist. her speech made no measurable improvement in that year.
it was then i realized i would have to take her education and speech therapy into my own hands. started doing research. talking to people. asking more questions.
insisted that the public school purchase the Kaufmann Praxis test to determine if Sam was apraxic. They finally did buy the test kit and administered it to her. The results showed a very high likelihood of apraxia of speech. She was still just a bit too young for an official diagnosis.
my research led me to the conclusion that she would require an education driven by her speech requirements. There was no such education to be found in the Dallas area. The nearest program that offered a communication immersed education was in Mississippi at The Dubard School. (see links) she was too young for Dubard still. but i was told to check out their Children's Center for Communication & Development. both on the campus of the university of southern mississippi. my Alma Mater.
we made the snap decision to drive over for the weekend and interview there. sam was accepted to the program that day. a week later, my two daughters and i moved to mississippi for the school year. i was pregnant with my son. we lived with my parents for the year while my husband stayed here in texas to work and hold down the fort.
we had finally made the decision to move to mississippi so we could keep Sam at the Children's Center another year and then hopefully to have her accepted into Dubard (they have a two year waiting list). She was making noticeable progress for the first time ever.
while house shopping in Mississippi, i was on the phone with one of my speech resources in dallas. she told me about a new pilot program for speech delayed kids at the Shelton School. i hung up with her, and called Shelton only to be told that yes, they did have a new program but that the class for Sam's age group was already filled.
i begged. and pleaded. and told them what we were willing to do for our daughter. PLEASE would they consider making a spot for her. They agreed to consider it if i would send them all of her educational and medical records asap. i copied them that day and overnighted the 10 lb. package to them.
a week later they called to let us know they had reviewed her file and were going to make a place for her.
my family could return to texas.
that summer, she attended a fantastic program at the Callier Center in Richardson.
and in the fall, she started at shelton. her class has a speech therapist and a teacher. both trained in the Association Method.
fall 2008 will be the start of her fourth year there.
along the way, we have also added the diagnosis of ADHD, Dyslexia and Bipolar Disorder. in addition, her teachers tell me she exhibits the characteristics of a child with a brain injury.
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