Each of our children's FASD evaluations runs between 15 and 20 pages long and cover a plethora of angles, assessments, analysis and recommendations for each child. Yesterday I ran across the following statement in one of the older kids most recent reports and it made me dance.
"This child's academic skills are an area of great individual strength given his cognitive ability. The current homeschool curriculum appears to be working very well for his individual needs.... It is recommended that they continue to provide a similar level of academic support."
My translation of that statement (which was affirmed by Dr Boys) is that this child is beyond where he would be expected to be academically because of the 1:1 instruction and flexibility he is given as a student in our homeschool.
Total music to my ears as we have worked hard to tailor every portion of each child's educational materials to their particular needs - even when standardizing the system would be so much easier. I admit our way is expensive - but it also seems to be working! Balm for my heart as I venture into my own classroom each day wondering if the 'professional' teachers could be doing a better job. Thanks Dr Boys...those words mean a lot.
Friday, September 30, 2011
Thursday, September 29, 2011
MOFAS Training or Man Date in Disguise?
I just popped Dearest's registration for the MOFAS/CHS Hand in Hand series training into the mail. Starting October 15th and for the four Tuesday nights following that he will be learning as much as possible about living with and loving those with diagnosed or suspected FASD's.
I'm thinking it would be a great opportunity for the dads in our peer group to get together and do a little bonding....not that it wouldn't be great for the moms - we just have so many opportunities to connect through blogging, email, coffee dates, midnight crash sessions and the general web of relationships that I want the same for our husbands. Intentionally meeting and nurturing relationships with other families affected by FASD's has been the most important piece for our family as we came to the realization that our lives were never going back to 'normal.'
Here is the link to the Hand in Hand series of classes - I have a pdf of the registration that I can send via email to anyone who wants it also. Man Date or continuing parenting education....either way I think it's a great investment of our time!
I'm thinking it would be a great opportunity for the dads in our peer group to get together and do a little bonding....not that it wouldn't be great for the moms - we just have so many opportunities to connect through blogging, email, coffee dates, midnight crash sessions and the general web of relationships that I want the same for our husbands. Intentionally meeting and nurturing relationships with other families affected by FASD's has been the most important piece for our family as we came to the realization that our lives were never going back to 'normal.'
Here is the link to the Hand in Hand series of classes - I have a pdf of the registration that I can send via email to anyone who wants it also. Man Date or continuing parenting education....either way I think it's a great investment of our time!
Wednesday, September 28, 2011
Oh Happy Day.....
| One happy young man with his new learn-through -coloring book on birds. |
This afternoon I am celebrating the straight FAS diagnosis that Kudu received at the UM clinic. It's been 11 years of trying to untangle and interpret the strange behavior and reactions of this hunky fellow - issues that surfaced when he was six weeks old and have continued to perplex and confuse our medical community ever since.
For years the best interpretation we could come up with was autistic, or autistic type behaviors but the diagnosis never quite fit. (Ok - it was a bad enough match to have our GP ask if I was sure it was his report and not another child's.)
Because of our Gp's questions I followed up with the autism specialists and was told that I was 'seeing my child as I chose to' (dr speak for being in denial) because I questioned their assessments of him as moderately to severely autistic and tried to explain where the label didn't fit.
It was hinted at that I was 'diagnosis shopping' when I asked for a referral to the FASD specialists to have him evaluated. (grr....like I was supposed to blindly accept this totally wrong autism diagnosis from a team that spent one day with him?)
It was a huge relief today to have Dr Boys at the UM say that everything I have been pointing out for years - the FAS facial characteristics (he has all three), flattened pinna edges on his ears (not to mention bent pinkies and other secondary indicators :), growth patterns below the 10th percentiles (prior to puberty), unusual behavior patterns, sensory seeking actions, executive function challenges, reasoning and memory issues - were not just a strange unrelated pile of issues. Nope - they all have one basic name and that is FAS. Not that I am happy he has FAS - I'm just thrilled that we finally have the right name and diagnosis for the constellation of issues which have been with him since birth.
The affirmation of my long-held but not confirmed diagnosis doesn't change much in our world. But it does give us a better framework to understand his strengths and weaknesses and the opportunity to help him be the very best he can be. Because most of the damage isn't on the outside where we can see it but behind that strong forehead - in the frontal lobe of his brain.
Tuesday, September 27, 2011
FASD: Being Judged By What They Do.....
After yesterdays post which was inspired by by R in Salt Lake - she/he made the following comment......(Hope this isn't bothersome to you ...if you are at T4A later this month I will owe you a Latte for sure or maybe lunch!)
"I know, and treasure. Teens and adults who love and serve Jesus with all their hearts. And continue to behave in ways we cringe at. Ways that make us wonder about their faith - Ways that really scare us." (quoted from post)
(R wrote) Ultimately who we are is not whom we say we are, or whom others say we are, but what we DO. Everyone in my world knows this. Even (or especially) the cynical teen who looks at all adults as hypocrites. Except my kid with fasd. She does not seem to love or serve anyone with all her heart, including herself. Caring would seem to be basic to everything else, but she honestly seems to Not Care Much. I would despair for her, but I know we have a Father who cares before I do, and long after I have stopped. And I am going to stand on the fact that She is His. -- R. in Salt Lake"
Dear R - you are so right that this child belongs wholly to God and that He will love her far longer and far better than any of us ever could. I totally understand what you are saying about your daughter with FASD seeming to not care much - it's one of the vital areas that prenatal exposure to alcohol and drugs seems to affect. For some the behavior is rages, or intentionally inflicting harm on selves or others, for others it's hyper sexuality, kleptomania, pathological lying or out of control behaviors. It's all horrible and because of the anti-social nature of the behaviors many people with FASD's, RAD etc... are very often labeled and judged, not for who they are but based on the outward symptoms of their disorder.
Here is where I need to gently disagree with you. My children with FASD should not be defined by what they do. I believe that they are more than their behaviors, more than their failings, more than their failures - they are precious and vulnerable children - who's hearts are known to God and who's lives have been laid out before them along a pathway none would choose. And I, angry, stubborn, judgemental and ugly person that I am, have been trusted with their vulnerable hearts and broken bodies. Thankful that I am not judged solely by what I do - for I would fail. Miserably. And doubly thankful for mercies that are new every morning - over those who do good and those who's hearts long to even as they do wrong.
Love you to pieces - whoever you are.
D
(P.s. Carrie did a great job of following up on my last post on the theological side of FASD and sin yesterday.)
"I know, and treasure. Teens and adults who love and serve Jesus with all their hearts. And continue to behave in ways we cringe at. Ways that make us wonder about their faith - Ways that really scare us." (quoted from post)
(R wrote) Ultimately who we are is not whom we say we are, or whom others say we are, but what we DO. Everyone in my world knows this. Even (or especially) the cynical teen who looks at all adults as hypocrites. Except my kid with fasd. She does not seem to love or serve anyone with all her heart, including herself. Caring would seem to be basic to everything else, but she honestly seems to Not Care Much. I would despair for her, but I know we have a Father who cares before I do, and long after I have stopped. And I am going to stand on the fact that She is His. -- R. in Salt Lake"
Dear R - you are so right that this child belongs wholly to God and that He will love her far longer and far better than any of us ever could. I totally understand what you are saying about your daughter with FASD seeming to not care much - it's one of the vital areas that prenatal exposure to alcohol and drugs seems to affect. For some the behavior is rages, or intentionally inflicting harm on selves or others, for others it's hyper sexuality, kleptomania, pathological lying or out of control behaviors. It's all horrible and because of the anti-social nature of the behaviors many people with FASD's, RAD etc... are very often labeled and judged, not for who they are but based on the outward symptoms of their disorder.
Here is where I need to gently disagree with you. My children with FASD should not be defined by what they do. I believe that they are more than their behaviors, more than their failings, more than their failures - they are precious and vulnerable children - who's hearts are known to God and who's lives have been laid out before them along a pathway none would choose. And I, angry, stubborn, judgemental and ugly person that I am, have been trusted with their vulnerable hearts and broken bodies. Thankful that I am not judged solely by what I do - for I would fail. Miserably. And doubly thankful for mercies that are new every morning - over those who do good and those who's hearts long to even as they do wrong.
Love you to pieces - whoever you are.
D
(P.s. Carrie did a great job of following up on my last post on the theological side of FASD and sin yesterday.)
Monday, September 26, 2011
FASD: It's All About Sin- But It Might Not Be Theirs We Need To Focus On.....
This is another one of those 'stick your neck out to say something and then cover and duck at the fallout' sort of posts. The very first thing I want to say is that what I have to share has NOT been inspired by any recent conversations, comments, judgements or opinions expressed within my circle of life recently - rather it is directly related to an anonymous comment left a few weeks ago (thanks to that commenter for being brave enough to ask the hard questions!)
She wrote.......
"Hi! I've been reading your blog for awhile. We are...... foster parents. Our foster daughters have a few diagnoses and many behavior issues. I'm wondering-how do you differentiate between FASD behaviors, and just plain sinfulness. I could totally see my biological child throwing rocks at someone and he has no diagnosis to excuse him.....
Not that that I'm doubting you and what you know to be true about FASD, it's just that my foster daugther does a lot of really really hard to deal with stuff, and I have a hard time saying "well, it's because of this or that." I think it's because she hasn't yet had her heart changed by Jesus and is still being ruled by sin. "
This is a good sample of the number two most frequently asked question I get from adoptive parents regarding their FASD/RAD/PTSD kids. Stated another way "How can we tell what behavior is natural/normal (AKA:sinful or childlike) and what is caused by disability or trauma?"
A super good question - and almost impossible one for anyone to answer except a very aware and engaged parent of a particular child.
Yep - I wrote that.
Psychiatrists look at one side.
Pastors look at another.
Teachers look at a third.
Law Enforcement looks at a fourth.
Social Workers look at a fifth.
A parent looks at all the sides at once...across time...relationships....experiences... and even into the future.
But being the parent isn't enough.
Your parenting paradigm must have room for non-neurotypical kid
to thrive.
Because they are different
The rules need to be different.
(I'm ducking again!)
Because we have in our mind that sin-is-sin.
or
Bad behavior is bad behavior (if we don't ascribe to sin)
and there are consequences for either one
and consequences should be equal, just and immediate
in order to change behavior.
Which I agree with...
in principle.
But if good consistent consequences don't change behavior
and we keep trying the same pattern of punishment fits the crime -
what do we have?
Abuse?
Stupidity on the parents part?
(I have written on that one before.)
I know,
and treasure.
Teens and adults who love and serve Jesus
with all their hearts.
And continue to behave in ways we cringe at.
Ways that make us wonder about their faith-
Ways that really scare us.
Which doesn't make their behavior alright.
No, not, never.
But because they are living with a hidden (or not so hidden) disability
it means our response shouldn't be automatic and harsh and legalistic.
If it is -
I suspect that our sin -
as neuro-typical persons-
placing our standards and judgment.
Without considering the persons abilities whom we judge
swings wide of our goal of compassionate living
or smelling anything like Jesus.
And I think,
that the sin we should most be worried about -
as we consider theirs-
in fear and trembling-
is our own.
All of which to say. As parents and foster parents, pastors, teachers, doctors and friends of those who have been traumatized and damaged in their pasts - we need to be super careful that we are not causing more harm than good as we attempt to bend them into shapes which meet our expectations. Especially under the guise of good parenting and consistency.
She wrote.......
"Hi! I've been reading your blog for awhile. We are...... foster parents. Our foster daughters have a few diagnoses and many behavior issues. I'm wondering-how do you differentiate between FASD behaviors, and just plain sinfulness. I could totally see my biological child throwing rocks at someone and he has no diagnosis to excuse him.....
Not that that I'm doubting you and what you know to be true about FASD, it's just that my foster daugther does a lot of really really hard to deal with stuff, and I have a hard time saying "well, it's because of this or that." I think it's because she hasn't yet had her heart changed by Jesus and is still being ruled by sin. "
This is a good sample of the number two most frequently asked question I get from adoptive parents regarding their FASD/RAD/PTSD kids. Stated another way "How can we tell what behavior is natural/normal (AKA:sinful or childlike) and what is caused by disability or trauma?"
A super good question - and almost impossible one for anyone to answer except a very aware and engaged parent of a particular child.
Yep - I wrote that.
Psychiatrists look at one side.
Pastors look at another.
Teachers look at a third.
Law Enforcement looks at a fourth.
Social Workers look at a fifth.
A parent looks at all the sides at once...across time...relationships....experiences... and even into the future.
But being the parent isn't enough.
Your parenting paradigm must have room for non-neurotypical kid
to thrive.
Because they are different
The rules need to be different.
(I'm ducking again!)
Because we have in our mind that sin-is-sin.
or
Bad behavior is bad behavior (if we don't ascribe to sin)
and there are consequences for either one
and consequences should be equal, just and immediate
in order to change behavior.
Which I agree with...
in principle.
But if good consistent consequences don't change behavior
and we keep trying the same pattern of punishment fits the crime -
what do we have?
Abuse?
Stupidity on the parents part?
(I have written on that one before.)
I know,
and treasure.
Teens and adults who love and serve Jesus
with all their hearts.
And continue to behave in ways we cringe at.
Ways that make us wonder about their faith-
Ways that really scare us.
Which doesn't make their behavior alright.
No, not, never.
But because they are living with a hidden (or not so hidden) disability
it means our response shouldn't be automatic and harsh and legalistic.
If it is -
I suspect that our sin -
as neuro-typical persons-
placing our standards and judgment.
Without considering the persons abilities whom we judge
swings wide of our goal of compassionate living
or smelling anything like Jesus.
And I think,
that the sin we should most be worried about -
as we consider theirs-
in fear and trembling-
is our own.
All of which to say. As parents and foster parents, pastors, teachers, doctors and friends of those who have been traumatized and damaged in their pasts - we need to be super careful that we are not causing more harm than good as we attempt to bend them into shapes which meet our expectations. Especially under the guise of good parenting and consistency.
Sometimes It's Helpful to Have FASD in The House......
The good news is that the water pouring out from under the washer this morning was not a terminal crack in the liner - the bad news is that it was created by a busy child on the FASD list who turned the hose on, got distracted and walked away. The rest of the good news is that it did identify the location of the crack in the foundation where water has been seeping in...which lets me know what my next agenda item is for sure. See - some days it's helpful to have FASD in the house.
Thursday, September 22, 2011
Three Places We Have Not Gone Before.......
September has become a time of venturing into new waters for our family. Having the two oldest kids enrolled in classes outside the home has stretched our homeschool in one way even while Madeleine has started helping on Wednesdays as we restructure the younger crew.
But there is much more than school going on.
Last week we submitted our first application requesting Medical Assistance on four of the kids who are most affected by FASD's. It's a long and twisted story but where we stand today is embracing the reality that the cost to raise a child with alcohol exposure is hugely more than that of a non-affected child. Nothing we didn't know before - but this Spring brought with it a major shift in the kids physical and psychological needs and it was clear that our moderate income was not going to cover the costs of their care in the long term. So we are applying to MA (or TEFRA if we are denied) and learning a whole new language and system.
And if that's not enough in the 'new' category.....
We are adding a new pediatric Psychiatrist to our long list of medical friends this week.
The same four kids have appointments with her before the end of the month for medication management/review and to establish a rapport. This is a pro active step as we caught a glimpse this Spring of how puberty might affect our kids with FASD's and.... well....we sure don't want to be blind-sided again!
But there is much more than school going on.
Last week we submitted our first application requesting Medical Assistance on four of the kids who are most affected by FASD's. It's a long and twisted story but where we stand today is embracing the reality that the cost to raise a child with alcohol exposure is hugely more than that of a non-affected child. Nothing we didn't know before - but this Spring brought with it a major shift in the kids physical and psychological needs and it was clear that our moderate income was not going to cover the costs of their care in the long term. So we are applying to MA (or TEFRA if we are denied) and learning a whole new language and system.
And if that's not enough in the 'new' category.....
We are adding a new pediatric Psychiatrist to our long list of medical friends this week.
The same four kids have appointments with her before the end of the month for medication management/review and to establish a rapport. This is a pro active step as we caught a glimpse this Spring of how puberty might affect our kids with FASD's and.... well....we sure don't want to be blind-sided again!
Labels:
Adoption,
FASD,
Homeschool,
parenting kids with disabilities
Wednesday, September 21, 2011
Time To Pack up The Bottle......
Sunday, September 18, 2011
Sucess All Around: Everyone Did Their Best......
The three little girls were in the same ring this time - which worked fine as their birthdays only span 23 months - but the judges did have to remind the oldest two of the correct level of offense to use - there was a bit of teeth barring going on as they again dueled for first and second place.
Steam was thrilled in an .....oh -no this is going to hurt... sort of way to have a teen boy his own rank, size and abilities to spar with. It was a good fight and the opportunity for him to try out that new six foot body he's living in. In the end he took second and was happy to be done.
Thanks to Master Janelle Gleisner and ATA Burnsville for hosting this tournament - it was a great day for our family!
Sometimes A Girl Just Has To Dig Through The Trash......
Like when they realize they 'might' have thrown away $200 cash.
And it's a darn good thing I checked - because it was there. All slimy and gooey in the bottom of the big alley can - so I washed it - dried it - and added 'money launderer' to the list of crimes I can be suspected of today.
Thursday, September 15, 2011
Crossing The Street.....
Twenty years ago I worked a professional job in Downtown Seattle. I quickly learned my way around the city streets and developed a strong sense of which blocks were safe to walk down at night and those I should avoid. As a 120lb, 20-something it wasn't wise for me to hang out in the rougher parts of the city and I was careful to evaluate those I encountered with an eye for personal safety. Most of those who I perceived as 'dangerous' also appeared to have mental health issues - it was the 1980s and the State of Washington had released many individuals from residential care who were now wandering the streets. I had been taught to cross the street to avoid danger and did so regularly.
Life is a little different now.
Mental health challenges are a large part of the FASD reality - one that most of us don't really understand until we are in over our heads with children we love and forced to deal with realities we wish we could change. This brings the mental health issue off the streets and slaps us hard with the fact that we are called to love kids who's issues are not going to go away and will most likely progress and become more difficult as they grow up. I have written before that these early years (birth to 11 or so) are the 'easy' ones with FASD's - and I want to embrace them even as I look into a future where my kids may join the ranks of those who make others cross the street and think about safety.
Life is a little different now.
Mental health challenges are a large part of the FASD reality - one that most of us don't really understand until we are in over our heads with children we love and forced to deal with realities we wish we could change. This brings the mental health issue off the streets and slaps us hard with the fact that we are called to love kids who's issues are not going to go away and will most likely progress and become more difficult as they grow up. I have written before that these early years (birth to 11 or so) are the 'easy' ones with FASD's - and I want to embrace them even as I look into a future where my kids may join the ranks of those who make others cross the street and think about safety.
The Question of Meds.....Julie's Post.
The Twisted Sisters (Julie, Barb and I) have recently spent several long evenings parked in Elijah's room at the Children's Hospital 40 miles closer than his regular home. Over the next few week the Sisters have a total of 8 kids seeing the same psychiatrist - Dr Reeve -for similar medication needs. Julie wrote a great post about medications this morning and I want to share it here.
Here's a taste of her post for those who didn't link over: "I speak with so many families who are "opposed" to exploring the road of medications to help their children with ADHD, FASD and other mental health diagnoses. Frankly, I don't think I have met a parent who wants to have their child "on" something...I sure know that I don't! But, if concerta and his cousins were suddenly pulled off the market, I would be a ritalin bootlegger because a few of my kids would suffer without it...that I know for sure...................'
Thanks Julie for the post - and thanks Barb for pushing us both to get those needed appointments.
Here's a taste of her post for those who didn't link over: "I speak with so many families who are "opposed" to exploring the road of medications to help their children with ADHD, FASD and other mental health diagnoses. Frankly, I don't think I have met a parent who wants to have their child "on" something...I sure know that I don't! But, if concerta and his cousins were suddenly pulled off the market, I would be a ritalin bootlegger because a few of my kids would suffer without it...that I know for sure...................'
Thanks Julie for the post - and thanks Barb for pushing us both to get those needed appointments.
Labels:
Adoption,
autism,
FASD,
parenting kids with disabilities
Monday, September 12, 2011
FASD: When Is It Time To Turn To Medications?
One of my friends emailed today and asked for ideas on deciding when it's time to look into medication for our kiddos with FASD's. Here's the short answer (and remember I'm not a medical professional so this is simply the opinion of a mom in the trenches.)
In our family it's time to get in and talk to our dr's about medications when.....
I catch myself saying 'nothing works'
or
They are a 'danger to themselves,'
or
They are a 'danger to others,'
or
They are 'out of control.'
There is also a point where I say
'I can't do this.'
or
'We can't continue'
or
'Something has to change.'
All legitimate reasons to get in and have a conversation with professionals who know our family.
Looking back, I am much quicker to ask for medication trials now than I was 11 years ago - over time I have learned that not all suffering is necessary and not all behavior can be modified through good parenting. To the friend who sent the email I would say - 'the fact you are asking says that what you are doing isn't working well enough- which in itself is enough reason to make the call and investigate the options. There is nothing virtuous about not medicating when the medications are needed. I love you - let me know what happens.'
That's also my message to any of you who are sitting on the medication fence. Please don't let your kids and family suffer based on principle - there are many safe and essential medications available which improve the quality of our kids lives and allow them to be their very best.
In our family it's time to get in and talk to our dr's about medications when.....
I catch myself saying 'nothing works'
or
They are a 'danger to themselves,'
or
They are a 'danger to others,'
or
They are 'out of control.'
There is also a point where I say
'I can't do this.'
or
'We can't continue'
or
'Something has to change.'
All legitimate reasons to get in and have a conversation with professionals who know our family.
Looking back, I am much quicker to ask for medication trials now than I was 11 years ago - over time I have learned that not all suffering is necessary and not all behavior can be modified through good parenting. To the friend who sent the email I would say - 'the fact you are asking says that what you are doing isn't working well enough- which in itself is enough reason to make the call and investigate the options. There is nothing virtuous about not medicating when the medications are needed. I love you - let me know what happens.'
That's also my message to any of you who are sitting on the medication fence. Please don't let your kids and family suffer based on principle - there are many safe and essential medications available which improve the quality of our kids lives and allow them to be their very best.
Harvest In Minnesota...........
First we were invited: Friends at church planted more sweet corn than they needed. Word was passed and we drove out to the farm after naps.
Of course we are just a tad tacky...so we filled the trunk of Madeline's car with corn as well as five laundry baskets for our van.
Some of whom stayed until 9:00 helping us cut, cook and freeze a good size pile of corn against the coming winter. The process and the day definitely had a vintage prairie feel to it - I am sure that our 111 year old kitchen has seen many similar ones played out and my heart was humming with the 'togetherness' of it all. Living in community, being known, pulling together, choosing to serve alongside - all concepts that cant be bought and are the hidden treasure of our life in Minnesota.
Friday, September 9, 2011
One Warm Fall Day.....
Two boys had a broken bike......
or two.
A cordless drill,
A box of mixed hardware and screws.....
A pile of boards...
And an idea.
After the first crash they started planning again....
A bigger dream, a problem solving exercise, a team project.
Thursday, September 8, 2011
Any Suggestions On This One?
Homeschooling kids with widely divergent educational needs is challenging - our own classroom spans Preschool through High school and includes learners whose IQ's fall all over the spectrum. This week I am reviewing our teaching materials (usually done in June but life didn't roll that way this year) - filling in the gaps that the CAT testing revealed and laying out a game plan for the next three months. I really enjoy this side of being a home educator and am thrilled to be back in MN where I know the resources and have a network of friends to share with. (Thank you God!)
My biggest quandary right now is finding materials for Speed to help him learn science, history, reading and social studies. He learns best through watching and listening (video and audio) but becomes easily confused and discouraged when faced with traditional workbooks and texts. This isn't a kid who 'prefers' learning through media (what boy doesn't?) this is one who can't learn other ways. (Side note: to all you home school mamas of special kids who are scolded by those who's kids do learn well from textbooks - follow your gut. Speed zero'd out on the CAT until we got to the Science and Social Studies portion - those he aced (with a little reading help) because of the videos hes watched.)
I have done a little looking on the Internet this morning and become totally overwhelmed - I would love to hear what your favorite sites/resources/suppliers of DVDs and audio materials are. Currently we are studying Ancient history and Earth Science and I am seriously considering an Ipad as a teaching tool for him. Ideas?
My biggest quandary right now is finding materials for Speed to help him learn science, history, reading and social studies. He learns best through watching and listening (video and audio) but becomes easily confused and discouraged when faced with traditional workbooks and texts. This isn't a kid who 'prefers' learning through media (what boy doesn't?) this is one who can't learn other ways. (Side note: to all you home school mamas of special kids who are scolded by those who's kids do learn well from textbooks - follow your gut. Speed zero'd out on the CAT until we got to the Science and Social Studies portion - those he aced (with a little reading help) because of the videos hes watched.)
I have done a little looking on the Internet this morning and become totally overwhelmed - I would love to hear what your favorite sites/resources/suppliers of DVDs and audio materials are. Currently we are studying Ancient history and Earth Science and I am seriously considering an Ipad as a teaching tool for him. Ideas?
Tuesday, September 6, 2011
Want to Know How I Really Feel About Unpacking Another Box of Books?
First Day..Ummm Week...Of School......
Sunday night I made a startling discovery. Rather than our standardized testing week starting next Wednesday it had begun the week before and our CAT materials had to be competed and back in the mail by Wednesday. Which caused me a moment of panic and sent me to my hidden stash to savor the last piece of my special chocolate as I contemplated my options.
So here we sit. Everyone else in the neighborhood is getting on the buses and headed off to class today - while I am checking off the entire first week of school and getting our tests ready to mail off for scoring. I'm thinking we deserve a second cup of coffee and a half holiday and poor Madeline has to go back to work having invested her weekend with us. She's the one who really needs a holiday to recover from the holiday with us............
Monday, September 5, 2011
Taking Time Out....
One of my favorite things about being back in Minnesota is that FASD's are not as invisible here as they were in Colorado. Though we hadn't really gotten involved with the MN FASD community before we moved, we were aware it existed, and this weekend through MOFAS we took the opportunity to spend a few nights relaxing with families similar to ours. (yes...I did intentionally type 'relaxing' which falls under that mixed messages catagory since we took our kids near fire, water, horses and unsupervised scissors...)

Just getting the kids out of the city at the end of the summer is a huge blessing. Embracing the beauty of early fall - the cooler weather, first hints of color on the trees and the chance to take a deep breath before we struggle through that first week of school was a relief to my heart. The graceful way the crew at Ironwood Springs served our meals, provided us with clean towels and provided a safe (and trully handicapped accesible) facility made it even better.
It was good to be with other families who live 24/7 with the reality of FASD. Noone flinched when we pulled out the big box of medications and hardly a head turned when impulse control issues surfaced and meltdowns began. Just being with people who speak the same language (that of hidden disability) for three days made everything easier. It was also a huge help that Madeline joined us as an extra set of eyes and hands so we could tag team the crew - which allowed Dearest and I to actually sit down with other parents for half an hour and talk FASD.
It was good to be with other families who live 24/7 with the reality of FASD. Noone flinched when we pulled out the big box of medications and hardly a head turned when impulse control issues surfaced and meltdowns began. Just being with people who speak the same language (that of hidden disability) for three days made everything easier. It was also a huge help that Madeline joined us as an extra set of eyes and hands so we could tag team the crew - which allowed Dearest and I to actually sit down with other parents for half an hour and talk FASD.
Although we left camp at 10:30 in the morning, most of the kids were utterly exhausted and slept the hour and a half home. The rest of the day was a combination of naps, falling apart and unpacking - but nothing really out of our norm.
Labels:
Adoption,
Family Life,
FASD,
parenting kids with disabilities
Friday, September 2, 2011
Mixed Messages: A Core Reality of Parenting Kids With FASD's....
Three weeks ago my husband and I went out on our first date in 2011. It's not that we don't like to go out together - it's just the reality of where we are in life right now that makes leaving the house together at night a little (ok a lot) tricky and not worth the emotional fallout from the kiddos with FASD's while they are trying so hard to settle back into our MN community.
Depending on who you talk to you might get very mixed messages about how the evening went......
Robert and I? We had fun - sad we needed to come home early for a very upset kiddo, but happy that we got to leave for three hours together.
The Unhappy Kid? It was horrible. He had no idea that we were going to the wedding together (though he had been told every day for a week he didn't remember) and felt like his world was spinning out of control - he could hardly breath and was terrified.
The Siblings? Nothing very unusual. The Unhappy kid wasn't much worse than usual and the older ones helped settle him down while they watched a movie.
The Baby Sitter? Great. She got them all down and almost all asleep before we got home.
The Friends who heard we needed to leave the reception early? Mortified that our not-so-little kid wasn't able to cope with his parents leaving the house together even with his 10 siblings and well know Sitter.
The Other Parents we know and love who also have kids with FASD's? Thrilled that nothing 'really bad' happened and that the Sitter is still willing to come again.
Living with any disability in a family shifts us away from main stream definitions of 'good time,' 'sucess' and 'progress.' When the nature of that disability is largely invisible to the larger community (as with FASD's) the gap becomes even wider and we often seem to be sending out mixed messages - which is exactly what our lives are - a jumbled basket of issues, challenges and realities which is ultimately confusing to those outside the community of FASD parenting. It's not that we need to clarify our speech - it's that our lives are not linear or predictable in the way that many people would like them to be, and sadly, what is predictable isn't what most people want to hear.
For those of you who pray - we who live with FASD's in the family covet your prayers this week. Something in the shift from summer to fall has hit many kids extra hard this year and several families are experiencing a new level of trauma and drama over the past month. Would you focus particularly on my friend Barb and her daughter as they walk a new path - one none of us would ever want to venture onto - but many will find ourselves traveling before we are done.
Depending on who you talk to you might get very mixed messages about how the evening went......
Robert and I? We had fun - sad we needed to come home early for a very upset kiddo, but happy that we got to leave for three hours together.
The Unhappy Kid? It was horrible. He had no idea that we were going to the wedding together (though he had been told every day for a week he didn't remember) and felt like his world was spinning out of control - he could hardly breath and was terrified.
The Siblings? Nothing very unusual. The Unhappy kid wasn't much worse than usual and the older ones helped settle him down while they watched a movie.
The Baby Sitter? Great. She got them all down and almost all asleep before we got home.
The Friends who heard we needed to leave the reception early? Mortified that our not-so-little kid wasn't able to cope with his parents leaving the house together even with his 10 siblings and well know Sitter.
The Other Parents we know and love who also have kids with FASD's? Thrilled that nothing 'really bad' happened and that the Sitter is still willing to come again.
Living with any disability in a family shifts us away from main stream definitions of 'good time,' 'sucess' and 'progress.' When the nature of that disability is largely invisible to the larger community (as with FASD's) the gap becomes even wider and we often seem to be sending out mixed messages - which is exactly what our lives are - a jumbled basket of issues, challenges and realities which is ultimately confusing to those outside the community of FASD parenting. It's not that we need to clarify our speech - it's that our lives are not linear or predictable in the way that many people would like them to be, and sadly, what is predictable isn't what most people want to hear.
For those of you who pray - we who live with FASD's in the family covet your prayers this week. Something in the shift from summer to fall has hit many kids extra hard this year and several families are experiencing a new level of trauma and drama over the past month. Would you focus particularly on my friend Barb and her daughter as they walk a new path - one none of us would ever want to venture onto - but many will find ourselves traveling before we are done.
Thursday, September 1, 2011
Tea And Georgia Peaches............
![]() |
| Sister set from the Tea collection. |
| the set in real life... |
Our girls are currently sizing in a 6/7/8 series so I ordered the set in a 7 thinking it was our best bet. It was a good guess. The size 7 dresses fit all three just fine (modest but fun) and I appreciated the finishing on all but one. Because some of our kids have sensory issues I did notice the rolling of a seam around the neck of the blue one which would not have worked for a SPD kiddo. But the others were great and a neuro typical kid would most likely not have been bugged by the unevenness.
Pants wise - the pink and striped leggings are a little snug on the size 8 but the blue looser ones fit her really well. Comparing these to our Hannah's they are a better fit for the more slender kids in the bunch and there are enough surprise pockets, pretty trim and fun patterns to satisfy my little set of fashion divas.
| Both girls in a size 7. The one on the left is usually wearing an 8 slim and the right is a 6 average. Both will work fine. |
| Notice anything else new besides the fashions? All three girls got new glasses this week. |
So there we go. Tea is a wonderful fun line of clothing and I am very pleased with the outfits I ordered. I especially appreciate the way they have wardrobe sets of tops and bottoms and after 13 years of hunting out Hannah's for my girlie's I find their patterns really refreshing.
So...if you link here you can enter to win a $500 shopping spree from Tea.
And if you link here and sign up for email updates you can get 10% off your first order.
And if you link here it says that there is a $25 discount on your first order over $50.
Of course I am still trying to figure out what it is about this Tea dress that calls to me...is it the Cher - like drape from the early 80's? Or is it a flat out rebellion against the stereotype home school mom to 11 wearing a calf length denim jumper? I don't know, but either way I still think it's a winner only made better in my mind because it's Barcelona inspired - which just happens to be my baby brothers home town.
Subscribe to:
Posts (Atom)

