Happy Birthday Beautiful!

Happy birthday to you, happy birthday to you, happy biiirrrtthhhddaaayy to Julia, happy birthday to you!

Can't wait to see you tonight! Hope you are having a good time with your dad and brother and natalie! I know you were excited to see him - it had been a long while!

You've come a long way baby girl - so much in the last year. When I look at pictures from last christmas to this one, i can see your spark coming back. Its a long slow ride we are on, but we will get you back the best we can and will love you no matter what.

I love you baby girl.

Mom

Three years ago today...my apologies julia....

I know many of you just want to hear positive stuff on Julia's blog. This post is not going to be positive. It is not negative either. It is the reality of what happened this day three years ago today. I have to get it out.

I recall Christmas 2006 not being a really great day. I recall the kid's father and I fighting most of the day - mostly just "cabin fever", "young loud kids" kinda stuff, but I remember it was not the best Christmas either of us had ever had. I remember going to bed upset. I remember waking the next day, having taken the day off work because Julia needed her one year "Wellness" check up and Jack needed a recheck on his ear infection he had just been treated for.

I remember packing them both into the car and driving them to the Doctor's Office - Pediatric Associates in Boynton Beach, Fl. I remember Julia crying in the car - as she never was a great traveler. I remember the headache I had. I remember arriving in the Dr office parking lot, and all the spots in Lot A were full so I had to drive to Lot C to get a spot. I remember pushing Julia in her stroller and holding Jacks hand as we went into the office. I remember checking in and sitting down and waiting. I remember wondering if I should sit in the "sick" waiting area because of Jack's ear, or the "well" waiting area because Julia was fine. I chose the "well" area. I recall the nurse - very attractive, but not friendly - calling us into the back. I remember walking down the hallway to the third room on the left. I recall the conversation the nurse had started as we walked toward the room - she said, "well, we can do julia's wellness exam today, but not her shots as it is two days too early". I remember getting irritated. I remember I was tired, still grumpy from the day before, headache from the car ride over there, irritated about the parking lot. I subtley "snapped" in my mind and told the nurse I would speak to the dr about the vaccines, as I took the day off to bring them both in, and yes, if the dr said it was ok, the vaccines would be given that day.

The nurse exited the room, obviously pissed at me and my attitude towards her (I was suprised at my attitude too! I had never spoken that way to any professional - I don't know what got into me - tired, grumpy, and anxious, as I always disliked holding my children down for their shots, and I had emotionally worked myself up to just doing it and getting it over with.) The dr, Dr Pedro Jakos, entered the room. Very nice man. He checked jack's ear which was fine. He then did julia's wellness exam. She was 100% fine. Meeting all milestones, saying Ah Oh to the dr, saying "ack" to jack all during the appointment. I discussed the vaccine issue with the dr and told him I was a little short with the nurse and apologized to him, but explained that I really didn't think two days would make much difference. Dr Jakos agreed and sent the nurse back in with the vaccines. She spoke no words to me. She gave the hepatitis vaccine first. Julia screamed. Jack came over and rubbed her head. Then the nurse got the MMR-V vaccine, and I swear, jabbed that thing into her left arm so hard that I wanted to push her away. Julia SCREAMED. Jack cried. I cried. The nurse left the room. We all calmed down and off we went. Drove home, put her down for her nap, and assumed all would be fine in the next day or so....likely just a sore arm and a fever from the shots - you know, "normal" reactions.

And then life went on as usual until January 5th.

Julia still has a lump in her arm from where the MMR-V was given. I feel it everyday.

Thanks for listening....just had to get it out...I keep having the visions of it over and over again today. I really hate this day.

I am so sorry Julia. I was just trying to keep you healthy. I didn't know. I am so sorry.

Susan

tomorrow

so sorry baby julia....

Almost Merry Christmas!

Its almost here....just two more days!! Santa, Shawn, Grandma, and many others have loaded her up with loot - lots of things i think she will enjoy and will also be therapeutic in a round about way. Still hoping she gets some donations for Hippotherapy at Saddle Up - but we will see. If not, I will continue to send her twice monthly - as she really does enjoy it. Thank you Nora for taking her there on a pretty regular basis, and even rearranging your schedule to make it work for her. Hopefully after the holidays this will continue!

I received a phone call from Julia's school director today regarding an issue that I will not discuss here, as it is the holidays, and the issue is ludicrous(something to do with an "artist" attorney......an artist attorney and special needs school - i don't get it......) but I am glad to have spoken to the director, as the positive side of the conversation negated the stupidity of the reason he called in the first place. He said that he and Julia's teachers and her therapists see Julia as such a joy to work with. She has fit in so well, and is able to participate in most of the activities right along with the other kids! Even her therapist at Children's Hospital commented on how "on" Julia has been during her last 3 weekly sessions that we take her to on tuesdays! I do contribute most of this to the great job Mark Graham and The Rise School are doing for Julia. I am so happy to have found them.

Julia has an appointment for the ABM method this coming Tuesday. It is another alternative treatment that I am hoping to sign her up for - I have heard great things about this! I sent several of you all the link, and my links don't work here - but you can google it http://www.highlandshealthandhealing.com/Anat.htm
She has her initial eval on tuesday, and then we will try to set up some kind of schedule for this - of course the clinic is in denver....so maybe we could set it up after her school lets out at 2:30 if she gets a good nap at school. We will figure it all out......i just hope it helps!

Anyway, Merry Merry to everyone. And a great New Year, too!

Susan

Early Christmas Present!

Julia has been approved for some in home care in the evenings a few nights a week! WOO HOO! Thank you so much Accent on Independence! She will start receiving these services next week! Basically they come into the home, help with her evening therapies, prepare her meals, feed her, bathe her, and get her to bed! This leave me some time to spend with Jack one on one and to get things done that I normally cannot - like filing these mountains of paperwork sitting on my table! Need to get everything organized for the attorney's visit which should be coming in January or February!!!

ALSO, the day after her birthday - 12-29-09, she starts getting free diapers from medicaid! I know this sounds small and silly, but diapers for four years have become very expensive!! This will free up a little money for me to hopefully be able to continue her hippotherapy - maybe only twice monthly instead of every week - but that's better than nothing considering how much she loves it! Her donations are running out from the fund raiser Shawn put together for her last year....I was surprised they didn't run out sooner, but everyone was so generous last year - we made it from february to december! Thanks SaddleUp Foundation for working with her so well - she loves her time with you! Thank you all again!

Julia has been doing great lately at school. She sits in circle time for minutes at a time. She eats at a table without being restrained. She naps on a mat like all the other kids. I am so thankful she is there and hope her progress continues!

Susan

T'was the Night Before Christmas....

Twas the Night Before Christmas
And all through the house
The creatures were stirring
Yes, even the mouse

We tried melatonin
And gave a hot bath
But the holiday jitters
They always distract

The children were finally
All nestled in bed
When nightmares of terror
Ran through my OWN head

Did I get the right gift
The right color
And style
Would there be a tantrum
Or even, maybe, a smile?

Our relatives come
But they don't understand
The pleasure she gets
Just from flapping her hands.

"She needs discipline," they say
"Just a well-needed smack,
You must learn to parent…"
And on goes the attack

We smile and nod
Because we know deep inside
The argument is moot
Let them all take a side

We know what it's like
To live with her conditions...
The struggles and triumphs
Achievements, regressions…

But what they don't know
And what they don't see
Is the joy that we feel
Over simplicity

She signed "hello"
She ate something green!
She "told" her first lie!
She did not cause a scene!

She sat on the potty
Who cares if she's four,
She stopped saying the same thing
More, more and more!

Others don't realize
Just how we can cope
How we bravely hang on
At the end of our rope

But what they don't see
Is the joy we can't hide
When our children with brian injuries
Make the tiniest stride

We may look at others
Without the problems we face
With jealousy, hatred
Or even distaste,

But what they don't know
Nor sometimes do we
Is that children with brain damage
Bring simplicity.

We don't get excited
Over expensive things
We jump for joy
With the progress work brings

Children with brain damage
Try hard every day
That they make us proud
More than words can say.

They work even harder
Than you or I
To achieve something small
To reach a star in the sky

So to those who don't get it
Or can't get a clue
Take a walk in our shoes
And I'll assure you

That even 10 minutes
Into the walk
You'll look at us
With respect, even shock.

You will realize
What it is we go through
And the next time you judge
We can assure you

That you won't say a thing
You'll be quiet and learn,
Like the years that we did
When the tables were turned…….




Written, not by me, but found on an autism website and a little modified......

Susan

In Home Care

The meeting went really well, I think! The nurse seemed impressed with the caregivers that I have found to help with Julia in the evenings and is going to let me know in the next week or so how many hours and how many days Julia qualifies for. One of the caregivers is going to her class on the 9th, which means, starting the 10th, I might have some help around here!! The other two can't get to the class that soon, so I will have to rely on one for a while....but hey, even one night a week to cook, clean, do laundry, play with JACK, watch a movie, etc, is very much welcomed! Julia loves all three of these people and is familiar with them, so it shouldn't be any problem for her either! Woo Hoo! Good for everyone involved!! :)

Dentist

Well, we survived the dentist! Woo Hoo!

The wait in the lobby was interesting. A lady there was trying to have a conversation on her cell phone (sounded like she was talking to her ex-husband to me) and she kept giving Julia, and especially me, the "stink eye" because julia would not stop crying or moving and kept pushing her son (who was about 10 yrs old) away from the video game. I tried to stop all that, but those of you who spend time with Julia, realize that is futile at times. So the lady thought I was a bad parent who couldn't discipline her child, but I knew better and didn't let it get to me too much. So, that was the waiting room episode.

We then went into the room. Julia got on the little chair for about 12 seconds and was then ready to move.....It took me and another assistant to hold her down and restrain her for the dental hygienist to look in her mouth and then polish her teeth. She said from what she could see they look real good! That is great since I can't brush them very well! Then the dentist came in and looked around. He wasn't able to use his instruments to poke at the teeth to look for soft spots, but said from what he could see, they looked good - all things considered. He did say if she ever needed a cavity filled or anything like that - she would need heavy sedation or general anesthesia. Good to know this now as far as her settlement goes - it won't cover routine care, but if anesthesia is required due to her behavior that comes with the brain injury, it will be covered. So, i got that documented today.

It is painful to watch these sorts of things....holding her down like a poorly-behaved dog - that is what I felt like today - i felt like I was at work - and could have used some of my well trained vet techs today! This is stuff I don't think some people understand. Most families take their kid to the dentist and they are done. I have to hold my kid down (and she has to be held down), i have to listen to her scream (and she has to scream because she is scared), and I have to watch her cry and struggle because she is scared and doesn't understand what is going on. It is painful to watch and to have to participate in this sort of thing on a regular basis. Not a pity party here, just a reality that isn't pleasant for me or more importantly HER! Its times like this that sometimes I wish I could just "write a check" and have someone else deal with all of it. But, then again, I would never do that - I will never leave Julia. She needs me to help her through these times - when it was over she grabbed my leg and hung on and it made it better for both of us.

Will let you know how the home health care thing goes later.

Susan

Big Day Tomorrow!

Julia has quite a day lined up for tomorrow!

She is going to skip Occupational Therapy and Augmentative Communication Therapy tomorrow (though I am bummed about that because she is doing so well and we want to get her a communication device asap), because she has her first DENTIST appointment tomorrow. Anyone who has ever watched her or tried to brush her teeth knows how this is going to go........Julia's Life Care Planner suggested I get this set up, to see if cleaning her teeth while she is awake is even possible - I try to brush, so does Shawn and Grandma, but the quality of the brushing is questionable. So, off to the dentist we go to see what shape her teeth are in. The dentist said we may get nowhere, and they may have to refer her to an outpatient facility that can sedate or anesthetize her for this....this is important info for the Life Care Planner, as it will determine if they will cover future sedations/anesthesia for dental care. I hope they are able to do it without meds, but, if they can't we need to know that. I am worried about what they will find in that mouth if they can do it and am hopeful they can give me some direction on getting her teeth brushed. We all do our best, but......Anyway, it has been my thought that these are her baby teeth anyway and will be falling out at age 6 or so anyway, but who knows if at age six we will be able to do it......I hope so!!!!

After the dentist, I have a nurse coming over recommended by medicaid, to see if she qualifies for any at home care. Someone to help out a few days a week, a couple hours a day, so that I can keep the house clean, cook dinner, spend time with Jack, have someone trained to do her in home therapy in the evenings....just to free up some time for me to take care of the homes other needs. So, I have three people who are interested in the job coming over tomorrow to see what its all about. They have to show that they know how to handle Julia, which they do as all of them have watched her many times. I hope this goes well, as this house is a mess many nights, and I want Jack to have some kind of a normal life a few nights a week! We could go to a movie together! How cool is that!

So, I will update tomorrow how all that goes. Please pray it goes well. I have all the PT, OT, ST plans written out with guidance from her therapists, etc....so, have been busy with my homework to make this happen, aside from all the paperwork and phonecalls involved with medicaid (an over two year battle) to get to this point! Things will be settling here soon I hope. I know!

Susan

Thanksgiving - can you believe it?

Well, another year has almost come to an end. Thanksgiving is today. I have several things ALREADY that I am thankful for today!

First and foremost, Shawn let me sleep in til 930am! That is something I haven't done in, well, I can't even remember - seriously!!! Second, he cooked a wonderful breakfast, to which I added waffles as I was having a craving. After I ate, my wonderful son, Jack came over and just layed on top of me - "giving me some love" as we call it. I usually have to beg, but today, he just did it on his own. I was laying there and realized that though I had slept in, I was still exhausted. So, Shawn let me go back to bed and I slept from 10:45 till 1pm!!! I haven't felt this rested since probably before I ever had any kids. It is strange! It is amazing what sleep can do for the soul!!! So, Thank you Shawn for taking care of the kids this morning to I could rejuvinate.....it was much needed and appreciated! Those were the little things for today.

The bigger things....well, even with all the adversity I have been facing over the last almost three years, I do have a lot to be thankful for. I have a roof over my head (not owned, but at least the ability to still rent and keep my kids warm and clothed). I have a good job which helps me pay all these bills that are coming in...so what if I am still in the hole every month - can you imagine if I was only able to work at Taco Bell or somthing similar? What would happen to my children. I am thankful that I have a career, or a "trade", where I could get a new job tomorrow if I was let go at my current practice - in this economy many many people are not as fortunate. I am thankful to have Jack, a wonderfully sweet child with a heart of gold and stamina - do not forget that everything that has happened over the last three years - has happened to him too. He does not get the attention he deserves, simply due to lack of time and his sister's disabilities, but he pushes on and got an award for being one of the most compassionate kids in his first grade class. And sense of humor - OMG - he keeps me going on the real hard days. I am thankful to have a wonderful boyfriend who accepts my children as his own, and who has the patience of a saint (most days). He puts up with me and my anger and depression that often rear their ugly heads when times are hard or when I get too wrapped up in all the red tape of advocating for my daughter. And finally, I am thankful, most of all, believe it or not, for my daughter, Julia. She has taught me so much about so many different things. She has led me to be more proactive, she has lead me to open my heart to others in need, she has taught me empathy for others in similar situations. She has taught me unconditional love. She has it for me, even when I get aggravated with the system, with her, etc, which does happen more often than I would like to admit. :) And I have unconditional love for her. I was speaking to some friends at work yesterday who told me that they are amazed at everything I am doing on her behalf and that they can't imagine trying to fit it all into a 24 hour day or a seven day week, but I do, week after week, after week....and you know why? Because I love my daughter more than anyone would ever believe and I want her to have the best chance at life. The decisions I make are for her. Some people think these decisions are wrong, because of the consequences on my finances, but these decisions are for her!!! I will live in a shack if I have to to keep doing what I do for HER. BECAUSE I LOVE HER and will do whatever I can to protect her and to hopefully improve her condition. Do I get frustrated with her? Yes I do. Anyone who has spent any amount of time gets frustrated with her, but WE all know it is NOT her fault for acting out the way she does. Her brain is broken. I am THANKFUL that I am able to try to make it better so she can be a more productive member of society - no matter what it does to my finances. When her settlement comes through - in about a year - things will change for the better for all of us - and I can start digging myself out of this hole....until then, I will continue. I am thankful for the people that chose to help with this, as they understand what the reasons are.

Your family is not just your blood family. Your family includes those who you choose to be a part of your life - and I love my "family" and am thankful for their support and friendship.

Go eat turkey everyone - especially YOU Makenzie - so glad she is eating again (though small amounts) after almost three years.. YOU GO GIRL!

Susan

good song....

http://www.youtube.com/watch?v=-vWhdz5svvQ

What is important.....

MY KIDS. Advocating for my kids. Especially my disabled child, Julia.

I have learned much in the last couple of days. I have learned that I am basically alone for all of the realities in this fight. Does Julia have people who care besides me? Absolutely she does! Will any of them follow through on promises? Well, I can think of a few. Are there people unrelated who follow through? Absolutely!!!! Thank you Mom, Roger, Shawn, Sissy, Howard, LeAnne, Barbara, and others in her "family" and everyone at work who has helped. But, even after all of that, it comes down to the one who really truly makes any of the positive future a reality for her. ME, her mother.

Am I resentful of this? Very. Am I dissappointed by many family members? Absolutely. Is blood thicker than water? Nope, not my experience.

I will NEVER give up on my kids, especially Julia, when it comes to her needs. Was this vaccine injury MY fault? Rationally, no. But I did demand the vaccine that day. Was this anyone elses fault? NOPE. But could I use some help? YES. Who are we trained to ask for help from....family..... Do people get it? NOPE. I made my bed now I will lay in it.

I think often of my children and who they will grow up to be. I hope and pray that Jack will "get" some ability to empathize, and if able, to help however he can - rather its his family or just a close friend. I think he will. I hope I can instill thse values in him. I try to do it everyday.

I realize that many people simply "cannot" "get" what it is to have a child like Julia, but I can tell you, that if the shoe were on the other foot, I would be there however I could - be it my sister, my mother, my father or anyone else in my family. I hope to pass these traits on to my children.

I am doing the best that I can and according to my therapist, I am doing remarkable well, even when I get the rejection(that pierces me to my soul) over and over again from one particular individual. My therapist would be proud of me today for my response to this person. Did it help my financial situation? Absolutely not, but did it help my emotional situation - YES. So, the money will come from the settlement eventually. Jack is young and will not remember that I could not provide him with everything he "wants" this christmas. Julia is the priority this year, and for however many years it takes to make her better and keep her out of a "home".

Susan

Very Confused

Do you ever feel like you are in desperate need of help and everyone around you, especially family, either doesn't seem to notice, or doesn't seem to understand, or doesn't really seem to care. But the JUDGEMENT of some of these people just blows my mind. I am trying to take a deep breath and just go with it, but inside i just want to SCREAM! I am told that the financial mess I am in was all due to my decisions, and therefore, is my responsibility to deal with it. I get that to a point....but it was NOT my DECISION to have a brain injured child. THAT is where MOST my money is going. It WAS and IS my decision to do what is best for HER right now, but it is NOT my DECISION to be unable to provide, for instance, a college fund, for my son in the future. This is not possible right now due to the FINANCIAL mess that I APPARENTLY created following my daughter's brain injury. I DID NOT CHOOSE THIS INJURY. I DID NOT CHOOSE THIS LIFE. I am so angry, sad, mad, sorrowful, confused, rejected, etc all at the same time right now.

So, aside from certain people especially close to Julia who are making me feel this way, THANK YOU to those who HAVE offered help. THANK YOU, most of all to my mother, Julia's only "participating" grandmother, who, despite her financial situation, always tries to help with more than occassional babysitting, and with getting the kids toys and clothes. THANK YOU to Granpa Roger for letting mom keep the kids for me now and then. THANK YOU to Shawn, for sitting with me here night after night listening to the "beehive" and keeping me sane. THANK YOU to Mary and Howard for starting the "rock" campiagn. THANK YOU Pam and Stacy for always listening and getting it. THANK YOU to Dawn, Mine, Anna, Nora, Liz, Jeanette, Dr Stacy, Molly, Mary Wise for help with babysitting and transportation for Julia's school which is in HER best INTEREST. Thank you to all who helped out at her fund raiser last year for her hippotherapy. If I have forgotten anyone - THANK YOU ALL! There are people out there who care, and most are not even related to julia and many have never even met her.

And to those of you who Julia's situation and I annoy - my apologies and you will never have to hear from us again. NOTHING expected, or even WANTED from you at this point. Go on and enjoy your quiet lives and keep Julia and I where you want us - out of sight out of mind. I would prefer that over the judgement anyday. We will all be judged in the end and I know I am doing right by my kids.

Susan

poem by an adult survivor of encephalitis....I hope my Julia isn't in pain! I wish she could just tell me!!

Encephalitis by Sarah Hill

It locks you away
inside your mind
inside your head
it keeps you alone
and different

Deep down you know
what the difference is
who you used to be
the person you once were
But who are you now?


Try and explain it to others
can they really understand
Try saying “I feel different”
Folks politely ask me why?


Its simple,
my mind is like treacle
(the extra sticky kind)
that pulls out all your fillings
and causes your teeth to grind.


My head is like a vacuum....
of the cleaning type
that sucks up bits and pieces
clears away in one full swipe.


My memory is shot to pieces
my arms and legs are weak
my balance is non existent
held up by two left feet.


There’s my vision too
my eyes – mere shadows
of their former selves
Two friends who find it hard to work
although they can with help.


Some mornings I find it hard to wake
My brain’s been left behind
It’s vanished, gone the night before
Looking for things I cannot find.


I feel like something’s got me
Something weird form outer space.
Am I a “Stepford wife”, a “zombie”?
Am I part of the Human Race?


It doesn’t feel like it.


Do they tell you about the head pain,
The pressure building up,
The depression and the mood swings,
Desperation fills my cup.


My tendency to drop things
through my fingers light and weak
How many pairs of trousers torn
from falling off my feet.


Its changed my personality
every ailment caused by you
And so the list continues
my life revolves around –


trying to get over this
dreadful illness.


Encephalitis,
it changes life,
it changes you.

AAAGGGHHHHHH - copy and paste

http://www.drdeeblanco.com/Articles/Vaccinations/tabid/331/Default.aspx

GO ROBERTA!

Spoke with Julia's Life Care Planner Tonight -she will be here within the next few weeks. She had a lot of insight into how she would represent her against the dept of human services Life care planner (who she said was a "female dog" - my response - LET ME AT HER!) Anyway, I am hopeful for some financial and resourceful help for Julia for the rest of her life. Julia will likely be unable to live independantly - ever, so her future depends on Roberta and Ron. PLEASE PRAY AND BELIEVE - in the system and more importantly, in God.

Susan

why oh why do my links not work...if anyone knows tell me how to fix it....this is an awesome video, even though julia is not "autistic", her neurologist said she would benefit most from a program for autistic kids......

please copy and paste.....

http://www.youtube.com/watch?v=HDdcDlQVYtM

another cancellation

Julia's attorney will not be able to make it out now til the new year....cancelled yesterday. The life care planner will still be coming out in november, but not him. Dissappointed to say the least. Oh well, it will happen soon, i suppose. We are closer now than we were three years ago.

Susan

Mark Shultz song - can you hear me - change the "son" and "him" to to "daughter" and "her" and I love it. Borrowed from Santana's web page...

I'm down on my knees again tonight,
I'm hoppin' this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place somehow.
See, he's not just anyone.

Can You hear me?
Can You see him?
Please don't leave him,
He's my son

Julia's neuro appt today

Julia had her 6 month follow up with neurology today. The news is not good or bad - not suprising -basically just wait and see again. One bit of concern was that her head has not grown since the vaccine injury three yrs ago. Her weight and height are in the 75 and 55% but her head is too small to even be on the charts. I asked about repeating an MRI and they said it really won't give us much information and that the only way to see if she is getting better is to SEE her get better. She explained to me that with the damage being primarily on her frontal lobes of her brain (both sides) that she is always going to have issues with behavior and impulse control. She said she will never be normal. But that she still has hope that she will improve - to what degree??? nobody knows. She said me putting her in that school that I did was the best thing I could have done for her - that hopefully the structure will teach her about appropriate behavior and socialization. She said it will likely take a lot of time, and I only have enough money for about 10 months for the school, so i will have to figure that one out.

I am so so so very angry about what happened to her. The dr's seem so callous - well maybe not callous, but just very "nonchalant" or "indifferent" about it all - i guess i get that way too in vet med, but these are people KIDS, not just dogs and cats. I don't know - i want it put to me straight, but it hurts to see them so...whatever....about it. They never knew her "before" - that she was an incredible baby with a fabulous personality, and now her life is FOREVER changed because of a stupid vaccine, for something she NEVER would have probably gotten anyway. I am so sad today. Happy birthday to me.....whatever. I just want to go to bed - tomorrow is another day.

Thanks to all of you who show your continued support for Julia and her crazy mom! :) Kidding, sort of.

Susan

Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God
Painful moments, trust God.
Every moment, thank God.

So nice and true....I for one will always do my best for you kids - I ain't perfect by any means, but will never just leave you hanging. I will always "just deal with it" for you. You are the reason for my existance.

"There is no trust more sacred than the one the world holds with children. There is no duty more important than ensuring that their rights are respected, that their welfare is protected, that their lives are free from fear and want, and that they grow up in peace" - Kofi Annan

Email from my friend Margaret - Glad her book is such a success and that she found her "purpose" in this life....

Good news! Remembering Alexis is now in five COSTCO stores in Denver! You have to have thousands of books to be carried by stores nationwide so I pitched a “Colorado Buy” and they decided to carry the books through the holidays at the 5 stores closest to my zip code. If sales are good, they’ll expand to all of the Denver stores.

The books are in the Aurora store on South Havana, Parker, Park Meadows, the SW store on West Quincy and the Sheridan store just off South Santa Fe Drive and Oxford. I will put the addresses on the website.

The cost of the book is $14.99 (I get just $11 a book but it’s worth the opportunity to sell LOTS of books). If you don’t mind, please let friends and associates know that the book is available at Costco. It would make a nice Christmas present, birthday present, Chanukah, etc.

And if you are in a Costco that carries the book, check it out and nudge the display a little so it shows more prominently. I went to Park Meadows yesterday to experience seeing my book in a Costco (something I always envisioned), and found that their stock of all books has quadrupled in the last three weeks. They are obviously stocking up for the holidays. Remembering Alexis was on the top shelf, binding out, so I took one of the books and placed it front-cover forward below the stack on top of Baldacci. What the heck. It might help!

Alexis has been very busy promoting the book. I have met with several book clubs at her house. People who read the book e-mail me through the website and take me up on the offer to meet with groups. We tour the house, pour some Allis Ranch wine, and have a lovely discussion about how it feels to be a daughter, sister, wife, mother and the general ups and downs of life. The honesty of the book opens the door for them to be honest about their feelings. I ask each woman what her strongest reaction to the book is. So far, no two answers have been the same. Doing this takes the discussion away from my life, thank goodness, and into theirs.

I had the privilege three weeks ago to meet with 35 mothers at a home in Denver. Each woman was either a mother of a handicapped child or had lost a normal or handicapped child. The hostess described it as a gathering of women who understand loss. It was quite a group. I felt Alexis by my side as I talked about the grief that comes with the diagnosis of a disability (the loss of expectation for your life and for the child’s life) and the repetition and reinforcement of that grief every time the child doesn’t meet significant developmental milestones. One woman responded, “My love for my son is so deep, but the grief is inside me right next to my love.” I also told them about feelings I had as Alexis’ mother that I didn’t recognize or couldn’t verbalize when Alexis was alive and suggested that they, too, had those feelings – like being afraid to be happy again because it can be taken away from you just like it was the moment you received the diagnosis. Many heads nodded. I am realizing how important it is for mothers of handicapped children to read the book and talk to me. Knowing of Alexis and me helps them believe they can get through the next day, the next week. I have never been more sure of my purpose than I am at these meetings.

I did feel, however, that I didn’t provide what I could to a woman whose 17-year-old son was killed in Montana a year and a half ago when he swerved to miss a deer. She is in the throes of grief and I couldn’t get there in the midst of all of those people. Driving home, I remember feeling exactly like she did, and I wished I could go back and tell her in a more private way that I understand.

That same week I did a training for 50 staff at Denver Options. I talked about parent’s grief, explaining to them when they work with a parent who is angry or depressed, where those emotions come from. I also read to them my list of how the parents feel. Afterward, a young woman came up to me with tears in her eyes and said, “Thank you. We are so busy recording Medicaid payments in 15 minute segments that we forget that we are actually dealing with people who have suffered a tremendous loss.” Another said, “You opened my eyes when you said that as staff we reflect the parents’ loss. I never realized that but it makes so much sense.” My response was, “Parents of normal children don’t know what goes on in this building. Coming here as a parent means your life is different.”

Last Sunday I met with another group of mothers, all of whom have special children, none of whom are older than 6. These mothers have just started their journeys. There were many tears. Over four hours, they expressed their anger and their fears. Their greatest fear is their future. What does it look like? One mother asked, “Will I still be this angry 15 years from now?” Another, whose son is cognitively normal but has a spinal deformity and is not expected to live for many years, said, “I can’t imagine losing Bjorn. As hard as it has been to accept his disabilities, he has taught me how to see life. I can’t imagine losing him. I will never be able to make it when he dies.” I assured her that she could and she would.

I have no idea what my life looks like from week to week, but I am grateful to be on this journey.

Thank you for reading all of this – I thought this was just going to be an e-mail about Costco!!

Margaret

School, Snow, Attorney!

So, this was to be Julia's second week at school. Shawn drove Julia in rush hour traffic up to school on Monday, just to find out it was Fall Break.....woops....I'm sure I had a schedule saying that somewhere, but with everything going on, I didn't look at it.....sorry about the wasted trip, Shawn. Julia was pretty upset that day because she wanted to STAY there even though nobody was there. Thank you to Dawn for keeping Julia all this week with no previous notice! Julia will be back at school on Monday. I do really look forward to seeing her progress. I hope it happens relatively quickly!

We had the first big winter storm of the season on Wednesday and Thursday. WOW, talk about a lot of snow! Thank goodness Dawn was available to keep the kids, even with all the weather! And thank goodness it was Fall Break!! Nobody would have been able to drive her to school in that weather! Jack LOVED the weather, and I LOVED having the day off yesterday (even after a few mild traffic incidences trying to drive to work, only to find out we were closed....).

I heard from Julia's Vaccine Injury Attorney today. They are planning on coming out mid-late November to discuss the settlement. I have so much to get ready as far as paperwork for them. It seems that as soon as I am done with one stack of phonebook sized requirements, another lands on my desk. I try to fit all this in during lunch breaks and in between appointments, as I cannot really get to it at night with the kiddos around. Shawn refers to it as my "sidework". I am actually amazed I have gotten so much done in the little time that I actually have to do it! Yes, I am pretty proud of myself. I can't wait to talk to the attorney and get somewhat of an idea of the timeframe for the settlement and what all it will cover for Julia. She deserves every nickel for what happened to her, and I will fight for it!

I will post some Halloween pics after tomorrow - Julia is going to be an Ewok and Jack, Darth Vader. I'm going to try to pull off Princess Leigha.....in my old age, and Shawn Obe Wan....(did I spell that right??)

Susan

First week at school!

Julia did great her first week at the Rise School! Her teachers said you would have never known it was her first week there - she wasn't scared, she loved playing with the toys, she participated with the groups to the best of her ability, and everything seems great! (oh, except for napping - she won't sleep there so she is WIPED OUT when she gets back to daycare at about 3pm and sleeps til about 5pm.....not so great for an early bedtime, but its worked out ok so far). Anyway, I am so happy things have gone smoothly!

I also want to extend huge THANK YOU'S to Shawn, Janette, Dawn Diehl, Mary Wise and Dr Stacey for the transportation help. This opportunity for Julia would not exist without your help! THANK YOU SO MUCH!

I will try to post some pics soon!

Susan

Cha Cha Cha Cha Changes.......

Wheels are turning, things are changing, and my brain hurts!

Lots of things going on, lots of paperwork flooding my brain and my countertops, but in the end it will mean positive changes for Julia and that is all that matters.

I have most of the paperwork for the school filled out....now I just need to figure out how to get her to school four days a week, oh, and how to get her home. Shawn has offered to take her most days and pick her up most afternoons, but I don't want all of that pressure on him, especially with winter coming in, so, I am looking to have some help at least a couple days a week. It will all come together I am sure....if you know anyone that might want to help - please give them my email address!!

I'll update as school progresses!

Susan

Decisions Decisions.....

Well, my mom, Anne (Julia's case worker with Developmental Pathways), Shawn, and I went to visit The Rise School in Denver today to see if we felt it was most appropriate for Julia....and wow...we really liked it. It was such a small, cozy, calm place. The director, Mark Graham, was very excited about the school and friendly. The classes are small - Julia's class would have 12 kids in it - 6 that are typical, and 6 with disabilities. Three of the disabled kids have Down's syndrome, and two have no diagnosis, but one of the two reminded me a lot of Julia. A beautiful little girl who was nonverbal. The ratio of kids to teachers is about 3:1. The teachers all have Master's degrees in special education, and the teachers aides all have bachelors degrees in teaching. They have Physical Therapists, Occupational Therapists, Speech Therapists, and Music Therapists there daily, and the kids get an average of 3-4 HOURS of therapy a DAY vs right now julia gets about 3-4 hours a WEEK of therapy. So..................I think we are going to do it - to sign her up. The financial consequences of this are going to be huge, but if it is what is best for her, I don't care. The logistics of getting her there are going to be complicated, but I will make it work, with the help of friends and family. So, getting ready to sit down and figure it all out....Please pray for us making this happen. We think it would be a WONDERFUL thing for Julia.

Susan

interesting interview about vaccine damage in children

http://www.youtube.com/watch?v=IkOyao2XoLs

New therapists today

Today Julia switched locations and times of her therapies. She is starting the evaluation to decide which communication device would be most appropriate for her and the therapist that is best for this job is in Littleton - so we changed to this location. I was lucky enough to also be able to schedule OT the same day and around the same time, so we can get those two therapies done in one shot. Her OT is a man named Kevin. He seemed really nice and very animated, which Julia loves, so I think it will be a good relationship for Julia. Kevin gave Shawn and I all kinds of ideas of different things to try with her. I think it was good to have a "new" pair of eyes on Julia to give both her and I new ways to look at things. I am real excited about Julia and I getting to know Kevin. After OT, Julia went on to ST with her new therapist Lisa. Julia was shown a couple of different communication devices and she worked with her on both. Lisa thought she did relatively well, with it being her first session. So I am excited to see how this progresses and to get her and I trained to the device.

I discussed the issue with public vs private school with her OT and he seemed to think the private was definately worth looking into - with all the therapy that they incorporate into the school, so we are cancelling next weeks sessions so we can go check out the Rise School and see what its all about. The link is attached for anyone who might be interested.

Susan

http://www.riseschool.org/denver

Again, don't know why my links stopped working - copy and paste if interested......I'm trying to figure this out!

Public school or private....

Julia had her IEP meeting last week. I have always hated those meetings - i always attended them alone and was always so overwhelmed that I would just say yes to whatever the team decided were her goals with very little personal input. Well, this year I had some support and things went well, I believe. Julia's case worker, Anne, with Developmental pathways came with me, along with my mom and Shawn. I went over all of my concerns with Julia with them and they told me about her progress since last year. I was surprised to hear a lot of what they said, as it is not what we see at home, but I guess in a structured environment, she behaves a little better than at home where it is a free for all!

Anyway, Anne, acting as my "advocate" did say she was pretty impressed with the organization of the school team working with Julia. However, she was not that impressed with the amount of time dedicated to OT and ST during the week. She suggested that I check into a "special needs" preschool, one that I had already signed Julia up for, but was told there was a year long wait list. Well, just an hour before Julia's meeting on Friday, the private school (The Rise School in Denver) called to say they had an unexpected opening....I called the school today and they do provide so much more as far as therapy. They provide, PT, OT, ST, and Music therapy. The program is five days a week from 8am to 230pm. Much more intensive, which equals much more expensive...but if it will help her, I have some money saved and I'm sure there are others who will help out, even if she just goes for a year or two during this "window" that we have with early intervention. The window starts "closing" at about age 5 - 6 years, and she will be four in December. I spoke with Julia's Life Care Planner hired by the Vaccine Injury Compensation Program to see if Julia's settlement would cover this private school, as the school does so much with therapies, but she said it would not. This confuses me and I will talk to her and her attorney Ron Homer when they come out to see Julia in November. It seems odd that they would cover residential placement for her, but not a school designed to hopefully keep her OUT of residential placement....anyway, I will know more later I guess.

Anyway, lots of decisions to make. I am going out to the Rise School next Tuesday to check it out, and then hope to observe at Julia's regular school and see if there is a significant difference.

Anne has agreed to go with me to the Rise School to give me her input. I am thankful for her help.

Susan

My initial thought for Julia's IEP meeting in a couple weeks....time to tell THEM how it is and what she needs!

Julia Grimes

Julia is a very caring, sensitive, little girl who seems to know more than many may give her credit for. Her sense of humor is evident even with her lack of ability to verbally communicate. She is very resilient considering her disabilities and tries hard to progress despite multiple hurdles.

Julia seems to want to communicate her wants and needs with others - family members, other kids, and wants to make friends. She is getting extremely frustrated with her inability to communicate her needs, which is causing her to appear "unhappy" with crying and tantrums,when really, I believe she is just frustrated. Julia's significant cognitive delays/dysfunctions, and serious deficits in the areas of communication and attention are very much impacting her life, at school, daycare, and even at home.

Social Skills:
1. Julia lacks understanding of typical "play" for a four year old. She engages in a more one sided type of play, or sometimes parallel play - more commonly seen in children significantly younger than Julia.
2. Julia lacks the ability to focus or attend to a task for more than about one minute, as noted by both her neurologist, Dr. Julie Parsons, and her Speech Evaluator, Tracy Kovach. This affects her ability to participate in groups during school time, and her ability to entertain herself at home unsupervised for any period of time without getting frustrated.
3. Julia is unable to follow more complex instructions, though can occasionally follow simple one task commands if engaged one on one.
4. Julia does not understand the "boundaries" of play or social interaction as most typical four year old do. She acts in play and social situations as a child significantly younger, for example stealing toys, eating food off of others plates, dumping food off of plates, not using utensils with any regularity, inability to drink from a regular cup, not sharing and getting upset when a toy, etc is taken from her. She is known to walk up to kids and just touch their bodies or their hair, often with her hands that are wet with slobber, which upsets other children.
5. Julia does not always know how to respond appropriately to others feelings - she will often cry if another child ignores her or tells her no or seems upset with her. When I, her mother, am upset at home (angry), she often just cries, or if I, her mother am sad, she disregards the feelings and goes about wandering. However, when others around her are happy, she does often respond favorably with a laugh and a smile.
6. When frustrated or over stimulated, Julia will cry and often has been throwing tantrums (throwing herself on the floor). The only thing I have found that helps with this is to let her wander which helps her unwind, but is not appropriate in most social situations.
7. Julia's speech therapists have noted that Julia's receptive language very far exceeds her expressive language. This need to be taken into consideration when dealing with Julia, as she does understand a lot of what is said to her, she just is unable to let you know that she understands.
8. Julia does not seem to me to understand rules very clearly. Perhaps this is just a cognitive delay and her being in her terrible two's (though she is almost four), or perhaps it is due to her brain injury and cognitive dysfunction.

Julia's social deficits result in her being constantly frustrated. She does not understand why she is unable to play with other children in the way that they play - playing outside with toys, tricycles, running, etc. She is frustrated when she is "forced" to sit in one place to participate in activities as was noted by speech pathologist, Tracy Kovach, and as is seen by me, Julia's mother, and I assume her teachers at school. Julia's inability to communicate leaves her extremely frustrated, causing her to cry often and be upset, which upsets everyone around her, including friends, her brother, Jack, and her other family members. We are ALL frustrated and want to somehow help this issue dramatically.

Sensory Issues

9. Julia was noted by her speech pathologist and her neurologist, to have a very limited ability to concentrate on any one thing for more than a minutes time. This was seen as, in Julia's "world", she experiences everything going on around her all at once and is unable to differentiate or concentrate on any one thing at any given time. This makes it extremely difficult for Julia to participate in groups.
10. In contrast to most children who get overstimulated and need to be put in a quiet place to calm down; Julia, when overstimulated, usually calms herself down by wandering around until she is OK, however, as stated previously, in social settings this is not, and will not remain appropriate. .

Learning

12. It is difficult to assess Julia's learning or ability to learn with her being nonverbal.
13. Julia, at a neurology appointment in May 09, was noted to not imitate with drawing or coloring. She did not select colors consistently. She was not able to count any numbers.
14. In OT, PT, and ST, Julia is very inconsistent with placing puzzle pieces in the correct place. She is not consistent with a shape sorter, however, often she will hold up the correct shape to the correct hole in the sorter, but cannot get it in without assistance.
15. Julia has shown improvement in her response to simple commands, ie "put this in the trash", put the bowl in the sink", "give the remote to mommy", and similar commands. However, more complex understanding of following more than one step commands is lacking.
16. Is there a way to assess her IQ at such a young age with her being nonverbal?
17. She did not reach many (any?) of her goals from her last initial IEP meeting which is of great concern to me.

Life Care Skills
18. Julia is unable to dress herself, or even help to pull her pants up and down, or help to take her shirt off. I would like to see her improve somewhat in this area.
19. Julia is not toilet trained, though does show an interest in watching others use the toilet. Perhaps this could be an opportunity for her to learn to pull her pants up and down, if brought to the potty once a day, even if she does not use it.
20. Julia is unable to put shoes or socks on by herself. She can remove her shoes and socks no problem, but cannot put them on. She does show interest in doing this.
21. Julia fights to have her teeth brushed. Is there anything that could be done about this at school, ie - books about it to look at, or having someone help her with it after snack to somehow make it "fun" for her.
22. Julia does not know how to appropriately brush her hair, though does make an effort to do so in bringing the brush to her head.



Overall Affects of Julia's Disability

23. Difficulty with motor skills - left sided hemiplegia, unable to manipulate playground equipment safely without supervision, still occasionally falls, unable to ride a bike or tricycle or other toy requiring organized movement of both legs and arms. Needs supervision with most physical activities, especially playground equipment, stairs, and steps. Safety cannot be overemphasized.
24. No organizational skills.
25. Little, if any, planning skills.
26. Extreme difficulty with sustained attention.
27. Difficulty in exerting mental control (crying outbursts, etc).
28. Extreme difficulty with concentration.
29. No fear of anything - no stranger danger, no fear of cars if walking outside, little fear of unknown animals, no fear of unusual situations or environments.
30. Being nonverbal is her biggest hurdle at this point. She needs a way to communicate and she wants to communicate. Her focus and attention span are equally important.


Strengths

Julia is a delightful, sweet girl when in a very structured environment with one on one support. It was recommended by her neurologist, Dr. Julie Parsons, that she be placed in a special structured school, such as The Rise School in Denver, which she believes would be most appropriate in helping her attention span immensely, and her family agrees. I have spoken to Mark Graham at The Rise School about Julia and she is on the waiting list. Our only issues about this at this point is transportation to get her there, as it is in Denver and I must work full time, and of course, the cost which is about $1000 to $1500 per month.

Julia has shown to have a very good sense of humor and appreciates humor in others and loves to laugh.

Julia has improved in her motor skills significantly over the last two years.

Julia has shown herself to be both physically strong, and more importantly, psychologically strong, in that she is very willing to TRY to help herself. She wants to improve.


Future hopes

The sky is the limit as far as I, her mother, am concerned. Realistically, I would love to see Julia progress to a point of being able to live independently at some point in her future. I would love to see Julia be able to hold down a job, live on her own or with support of caregivers, and be a productive member of society. Julia will always have the support of her family and her friends and we will provide for her whatever we can to reach these goals.

I respectfully request this written report be included in the written record of this meeting as part of my parental input.

Dr. Susan Lawson-Grimes

need i say more................

Cognitive and Phenomenological Perspectives

Other perspectives that might be helpful in understanding grief and loss are related to questions of meaning and adaptation to changed circumstances.

Marris (1974) argues that a major loss or bereavement "shatters the structure of meaning" and "breaks the thread of continuity which makes the world intelligible". Grieving can be best understood as a response to loss of meaning. In the case of disability, parents are forced to embark on a dual process of learning a new world while simultaneously building purpose and meaning around their child's disability. This process represents an ongoing task with greater and lesser challenges throughout their child's lifespan.



Grief Work

In grief work it is thought that mourning may not proceed until there is a clear image of what is lost. The psychoanalytical approach suggests that in order to facilitate the process parents require an opportunity to review their thoughts and feelings about the "wished-for child". For parents of children with disability, the loss continues to evolve; the grief work is necessarily more complex and ongoing.

Worden (1991) outlines a range of thoughts, feelings, behaviours and physical symptoms associated with grieving. These experiences may be useful to consider as typical responses that might accompany grieving. In the case of disability, it is conceivable that parents will experience various intensities and permutations throughout their lifespan, including:

Thoughts, such as disbelief, confusion, preoccupation.
Feelings, such as anxiety and fear, sadness, anger, guilt, inadequacy, hurt, relief, loneliness.
Behaviours, such as sleep disturbances, appetite disturbances, absent-minded behaviour, social withdrawal, dreams, avoiding reminders, searching and calling out, restless overactivity, crying.
Physical symptoms, such as hollowness in the stomach, tightness in the chest, tightness in the throat, over- sensitivity to noise, a sense of depersonalisation, lack of energy.

Grief and Parenting a Child with Disability

The birth of a child with a disability may well challenge parents and extended family members who rail against the unfairness of it all, wonder how this could have happened to them and even ask why they are being punished. Those who wish to assist the family of a child with a disability need to understand what the experience means to its various members and not presume to know. Several authors have focused specifically on grieving as it affects parents of children with disability.

Chronic Sorrow

Olshansky (1962) challenged the relevance of bereavement-related grief in relation to its relevance to a child with a disability and introduced the notion of chronic sorrow. Olshansky's view is that parents need permission to grieve from time to time if that is how they feel. This sorrow can peak at critical times such as entry to kindergarten or birthdays, or any time when the parent is starkly reminded of the child's disability. Most parents with a disabled child suffer chronic sorrow throughout their lives. The intensity of this sorrow varies from time to time, from situation to situation, and from one family member to another. Some show their sorrow clearly, others attempt to conceal it as these feelings can be very difficult to share.

The sentence "The child's parents haven't yet accepted their son/daughter's disability" is heard and used many times by teachers, social workers, doctors and others. Olshansky suggests that when parents are asked to accept their child's disability it is not clear what they are being asked to do. The great emphasis professionals place on "acceptance" might suggest to the parents that they should perceive their child from the point of view of the professional helper not as "their" child. In this case, it is useful to differentiate between emotional and intellectual acceptance.

Another question professionals may ask is: "Why doesn't this parent want to have that assessment done?" It is often assumed that the parent is reluctant to move forward. Here, the notion of acceptance recurs again. Alternatively, from a grieving perspective, the response may indicate that the parent is overwhelmed and is trying to negotiate the pace at which they learn further about their child's disability. In many instances, where the child is not endangered, this may be considered emotionally adaptive.

The professional who sees chronic sorrow as a normal psychological reaction will support the parent over a long period of time in which the parent may adjust feelings and organise internal and external resources to meet their own and the child's needs. Rather than working inexorably towards the acceptance of the disability, the immediate goal is to increase the parent's level of comfort in living with the child and coping with the added difficulties this may present from day to day.

Adjustment and Readjustment

Helen Featherstone (1980) in her book A Difference in the Family refers to acceptance as the "emotional promised land". She suggests it may be more helpful to talk in terms of adjustment and readjustment as age and circumstances alter. She writes: "disability is never as clear cut as death. Grief usually mingles with confusion and uncertainty. As parents learn more, either through their own research or through professional consultation the picture changes. Too often earlier professional predictions are contradicted. Not knowing what fate to mourn, parents face a thousand alternative scenarios. Parents looking for a diagnosis are frightened and immensely vulnerable. They may have already suffered days, months, even years of agonising doubt. They stand exposed and powerless before the 'experts'. Indifference, condescension, or equivocation wound them deeply."

Unresolved Grief

In Australia, a recent study by Elizabeth Bruce (1991) and others has looked more fully at the concepts of grieving in relation to the parenting role. Bruce found that unresolved grief is better understood as a normal response rather than a failure or inadequacy on the part of the parent. That is, if we look at the complicated nature of loss, its changing perspectives over time, the problem of unresolved grief may not lie with the parent but in the constantly changing nature of the loss.

The nature of parental grief will be influenced by:

The social context which provides images of normality.
The disability and its manifestations.
The passage of time.

When the child's disability is diagnosed, the parent is forced to embark on two processes:

Learning exactly what has been lost.
The process of grieving.

In the past the literature has focused on the initial reactions to the impact of diagnosis, rather than the lifelong nature of loss. It is noted that as the child's uncertain future unfolds, the very maturation process can present further fear of the future, along with concerns about provision for the child when the parents are no longer able to provide care.

Implications of the Range of Theories in Relation to Disability:

Some Key Points

What have parents of a child with a disability lost?

The expected perfect child.
The normal parenting role and its impact over time.
The possible loss of an independent adult.

A further source of grief for the parent is the child's own sense of loss.

The isolation that families of a disabled child experience compounds their grief.

The stage theory of grief provides unrealistic tasks for parents of a disabled child.

Parents have a wide range of feelings and reactions, e.g. anger, jealousy, frustration, irritability, sleeplessness, resentment, hostility, abandonment, embarrassment, fear, blame and marital conflict. Although aspects of these feelings reflect a grieving response, they can also represent a realistic response to the lack of concrete information about their child's future, the lack of appropriate and responsive services, and the inappropriate reaction of family and social networks to the loss.
Parents describe the task of coping with a disabled child as surviving each day and holding on to their grief until later, or perhaps not being able to address it at all.

Summary of the Current Thinking About Grief and Loss

Grieving is a normal process in response to significant loss.
People need permission to grieve and to know their feelings are valid and normal.
Coping with loss is ongoing throughout the life cycle of the family.
Acceptance of the disability is an outmoded term and seen as an unrealistic goal for parents.
The notion of adjustment should be differentiated into intellectual and emotional aspects.
Time of diagnosis is not necessarily the only acute period of grieving. Acute periods can occur throughout the child's life.
Concern for the child's future in adulthood is often present at a very early age.
With any minor disorder or developmental delay, the reality of the child's condition may not be apparent for many years.
Difficult feelings of anger, envy, jealousy, and denial, etc. are part of the grieving process and professionals have a role in helping parents work through these feelings, even when they are projected towards them.
Grieving can be experienced by family members in quite different ways, e.g. one member distances from information while the other is keen to embrace all the information.
Grief may be triggered by parent's internal mood states, which are not predictable, eg. memories of their own childhood, music that creates nostalgia.
Involvement of professionals should be positive for families, who sometimes feel they have no choice in the professional's involvement in their lives.
Implications For Health Professionals in Their Practice

Recurring Grief

Professionals may overestimate the impact of the initial crisis of diagnosis and underestimate the later recurrent grief. A sudden image of the 'normal child' years later may trigger a grieving response. Parents may feel that they are not to mourn after the initial period but to become heroic dedicated care givers. Parents comment that people constantly remark "how wonderful you are" or "I would never have coped as well as you have". They often have to perform the role of supporting wider family members, which means their own painful feelings are ignored or left on hold.

Gender and Cultural Differences

These differences will be a determinant in an individual's response to grief. Ethnic disability services have an important contribution to make in assisting professionals understand the wide range of reactions to loss in specific cultures. The effects on various members of the family are often misunderstood. Male and female responses may be quite different and marital relationships can be strained if there is an expectation that partners must grieve together. The mother usually has more opportunities to talk to service providers, whereas the father may be left behind, keeping his feelings on hold. Parents need to be informed about how grieving responses vary for each individual and that siblings' needs must not be ignored, both in their experience of the disability and their changed family dynamics.

Parents and Professional Partnerships

Parents need professionals who can remain supportive over a long period. It is never enough to simply reassure parents that their grief is 'normal' and leave it at that. The grief might be normal but it is also painful and challenging. Support and understanding and opportunities to 'work through' the grief and adjustments are still needed. To pronounce the experience as normal is often dismissive and an abdication of professional responsibility.

Self-help groups are of enormous value and offer a special understanding and credibility that professionals who are not themselves parents of a child with a disability can never provide. Research in this area indicates that a partnership between professionals and self-help groups is even more effective than either in isolation.

Professionals need to be cautious in applying theories of grieving as fact. Suggesting parents need formal counselling might not be appropriate. Often what is needed is a trusting, stable relationship that offers choices in support and an understanding about change and loss reactions when the individuals are ready. Being able to support parents when they are angry, blaming, fearful, depressed or fighting each other is essential to the relationship of partnership with the family. Within this partnership, professionals often experience the anger and blame of parents towards them and their services. Being able to recognise these emotions and continue to work through the difficult times is a key example of how grief issues can impact on this partnership.

Staff Grieve Too

Members of the helping professions are not immune to grief. Exposure to a high volume of multiple and chronic loss situations can leave the professional feeling either helpless and overwhelmed, or so well defended as to seem callous and switched-off in dealing with families. Education about loss and grief, combined with communication skills training and an adequate system of support, debriefing and professional supervision, is essential for maintenance of high-quality patient, family and staff care. This approach has been successfully modelled in palliative care settings, but has barely begun to be developed in the acute health arena or disability related services.

The Parent-Child Relationship

Families may still experience many joys and satisfaction with their child and his or her progress, and love them intensely, even while grieving. The level of attachment of parent to their child is intense and complex and can exist despite severe disability, limited life expectancy and the burden of care the disability imposes. In fact, parents can react strongly to any negativity in the way their child is described.

Parents will feel a great deal of urgency to understand and cope with the child's condition. Bruce et al (1991) found that there were no significant differences in reports of happiness in parenting between the disabled and non-disabled group over the previous year, indicating the capacity for a satisfying experience of parenting any child. This conclusion is also indicative of the intense level of attachment of many parents.



Common Occasions of Stress For Families of a Child with a Disability, including Key Transition Times

The time of diagnosis of the disability or the time of acquiring the disability.
The time of discovery of additional disabilities e.g. hearing loss, epilepsy, diabetes.
Pre-school placement and school placement.
Puberty, sexual expression, adolescence.
When the child becomes aware of his/her disability/differences.
School leaving age and vocational or future work decisions.
Birthdays, Mother's Day, Father's Day, Christmas Day.
During a subsequent pregnancy or parental illness.
When siblings marry or establishment of responsibility of siblings in future care arrangements.
Permanent care application, waiting list and offer of placement.
Ageing of parents and death of a prime care giver.
Conclusion

For parents the diagnosis of disability in a child is a dreaded event. Its short and long-term effects shadow the parenting experience. The changes in hopes and expectations, the grief of parents, siblings and family can be seen to parallel the life of the child with disability. Depending on the presence and severity of the disability, this same child is likely to experience intermittent bouts of grief in varying intensity. Against this background, and given the constant stresses, parents are likely to be overwhelmed at various points. Family relationships can become strained, sometimes leading to parental separation and divorce. However, knowledge of normal grief reactions that recur across the lifespan of the family, and opportunities for expression of grief will lead to healthier adjustment and adaptation for families and careers.

The intense level of attachment of many parents to their children, the hard-fought individual achievements, and the improving level of integration into community life are also examples of parents' capacity for a rich and satisfying experience of parenting children with a disability.

Augmentative Communication Evaluation

Julia had her Augmentative Communication Evaluation this afternoon. It was a little over two hour appointment where the speech therapist evaluated her and made recommendations on assistive communication devices. She kind of narrowed it down to two different ones. (which range in price from $5,000 to $8,000). Julia seemed to catch on pretty quickly to each which was great. She says it will likely help her frustration level, and her aggravation, (and my frustration level and aggravation too!). We are going to get her set up for a further evaluation, and likely change her ST and OT to a different location where they can train her (and me) to use the device. This means I will once again have to revise my work schedule if possible, as they only have a few time slots open for this and it is in Highlands Ranch, not Parker.....I am going to ask work about it tomorrow....they have been nothing but great with my schedule so far, so hopefully they will work with me here. This means she will be out of PT for a while, but honestly, I think her mobility is fine (often TOO fine for her cognitive function!!!). Anyway, this therapist said she was very impressed with Julia's understanding of things that are said to her and thinks she is very intelligent...most of her problems stem from 1. an inability to focus her attention to anything, and 2. her lack of ability to communicate. I asked what she thought of her future ability to talk, and she said, once again, that she has no crystal ball, but she thinks her speech /(communication?) will get "better". That is about all she would say.

I am glad to hear she thinks Julia is cognitively more "there" than she appears. I am thankful there are devices to help her communicate. It was a relatively positive appointment.

Susan

Escape Artist at Daycare

Well, it appears the pack-n-play is almost outgrown over at Dawn, the daycare provider's house. Dawn put Julia down for a nap, as usual, around 1ish. She went up to check on her 30 minutes later and noticed that the light was on and then heard noises. She opened the door, and got a taste of what my house looks like all the time. The pack-n-play is in Dawn's teenage daughter's room. Julia got out and emptied every drawer within reach and spread everything everywhere. Her clothes, her makeup smeared into the carpet and all over herself, her hair products, every kleenex pulled out of the box and strewn about the whole room, the mascara - everywhere, her necklaces and earrings, everywhere. I feel like I am obligated to buy her daughter a gift card to replace the makeup and facial products, and Dawn a gift card for a steam cleaner for the carpet. Luckily she didn't smear the mascara on the walls as she has done here. I feel so bad for them and for Julia for not knowing any better. She was just having fun.....she did get in trouble, Dawn said.

Since I have been home she has opened a child proof container twice - once while I wasn't watching, I then replace the cap and gave it to her so I could SEE her do it, and, within 60 seconds it was open and poured out on the floor. Luckily it was just a folate supplement (for me - for anxiety and depression!).

Also, the school today called and said Julia was very crabby today, and Dawn confirmed that when she went to pick her up she was screaming uncontrollably and they let Dawn remove her from the class early as they could not console her. She was this way all weekend, too, so I have a Dr appt for her tomorrow just to make sure she doesn't have an ear infection or something similar, before I go out of town. Good luck and THANK YOU to those who will be watching her while I am gone.

Susan

To believe or NOT to believe...

I had a heartbreaking conversation with Julia's PT last week. After her session, I just looked at her PT and said....."So, What do you think?......." This person is someone that has been working with disabled kids for over 30 years and seems to know her stuff, or at least have life experiences.....She said cautiously, "well, most kids get most of what they are going to get back 6-12 months after injury." I said, "well, its been three years in January...". She, again cautiously, said, "yes it has been". She said that Julia's responses are different than most kids responses to PT. THat her muscles and responses are just "different" than most brain injured children that she has worked with. She asked if Julia has had a recent MRI. I said, no...not since sept 08 when she was again in PICU seizing uncontrolably.....she said she wanted to talk to the neurologist. As we were leaving the room, she said....this is the hard part.....that I may want to look into residential placement for Julia, as there is usually a 5-6 year wait list for placement. She said that Julia is cute and "manageable" now, but that when kids hit puberty, they often change and can become aggressive and violent. That it could affect my whole family...and that it would be wise to have a place for her lined up - and she stressed ' IF NEEDED. If five or six years comes and she is better or at least controlable, then no harm done - move her down the list another year or so....if she is CURED (what I want!!!) then again, no harm done. But to start considering her future now. What a difficult conversation. I was physically ill the rest of the day thinking about it. My mom, bless her heart, talked to several people she knows with similar situations who said that what this therapist said was not off base. Just to consider signing her up, and wait, and pray, and see. I don't want to believe it will be necessary, and I WILL NOT believe it will be necessary, but I have another child to consider - who just today was CRYING hysterically because Julia would not stop crying - do his feelings and his future well being matter too? Just a simple question to consider. This is about EVERYONE.

Thanks for listening...I will assume some negative responses to this post. I am just trying to think forward.

Susan

Encephalitis survivor - Lynn

Today, I had the joy of meeting a friend of a friend named Lynn who suffered from encephalitis (likely misquito transmitted) at 6 years of age. She is now in her late 50's and appears to be doing GREAT! She was in a coma at the age of six for six weeks, and when she came out of it, she was unable to walk and unable to talk. She said her recovery took years - though it seemed to me her speech came back in a quicker timeframe than Julia's.....but she wasn't exactly sure how long it took and is going to speak with her mother about those things.

Anyway, we had a nice discussion, and she gave me a dose of "hope" that I have been needing for quite some time. She said her doctors told her mom that she would never graduate from high school - and she did! She said school was difficult for her always, but she studied very hard and graduated - not only from high school, but from college, and even got her masters!

It was interesting to talk to someone who has been where Julia is. She said that Julia probably knows much more than we think she does and to try as hard as possible to treat her like a normal kid, and to talk to her just like I would have spoken to Jack when he was little - even though she is unable to verbally respond. She told me to NEVER give up hope on the communication thing - and gave me some ideas on communicating with her now.

Anyway, it was a very eye opening conversation we had, and I hope the relationship continues. What a nice lady.

Susan

Amazing Lecture last night about vaccination in animals...

So, last night I was asked by my new employer to attend a lecture on vaccines, as they are trying to make some changes to their protocol and wanted to hear what this person lecturing had to say. I was all for the change in protocol, but was not so excited about paying a sitter (actually two sitters - as Julia had hippo therapy last night) $80 to go to some lecture about how great vaccines are....I was hesitant, but felt obligated to go, and it was a GREAT dinner, so I went.

The speaker was Dr Ronald Schultz. As I was walking in, I ran into two classmates of mine from vet school that I had not seen in 10 years.....interesting......and one of them, Melissa, said I might really like this speaker, as he is very vaccine "cautious"....(after I briefly told her of Julia's situation). Anyway, my interest was peaked and I sat at the front table.

This guy was AWESOME! Recommended protocols for vaccines for animals that I have wanted for YEARS - even BEFORE Julia got sick, but even more so since she did. I have a hard time paying all this money I have to pay for my vaccine injured daughter, using a salary I obtain from VACCINATING animals for things they don't need. Don't get me wrong, I am not anti vaccine - I have seen parvo, and I have seen distemper, and they are awful and deadly diseases, but older dogs do not get these diseases and do NOT need to be vaccinated year after year after year. Doing this makes chronic immune mediated issues WORSE, and can even cause different types of cancer, etc.......I was enamoured with Dr Schultz.

I sent him an email today thanking him for his lecture and letting him know I would love to talk to him more about both animal vaccines and childrens. I gained SO much respect for him when, towards the beginning of the lecture, he said, something to the affect of " I will not stand up here and say that childhood vaccines are CAUSING autism, but I would be the LAST person up here saying there is NO correlation" FINALLY someone, a DR, an IMMUNOLOGIST, is admitting this. We spoke briefly after the meeting about julia and about what is going on with childhood vaccines and seemed to be on the same page.

THANK YOU DR SCHULTZ! I hope you can reach many many veterinarians and change peoples thinking. It HAS to start somewhere.

Susan

Good Ol' Roy

I am FREAKING out. Last night Shawn and I went on a date and went to the Douglas County fair with NO KIDS. It was fun. We rode some rides, ate A LOT of BAD food, and then were watching the little pony rides thinking about how much Julia would love that. There was a litte pony there named Roy, that nobody wanted to ride because he was so small, and not that cute, and looked really sad. Shawn fell in love with Roy. He said he looked like he and Julia were kinda "on the same page".

After the fair, we went to Sienna to have a drink before heading home - didn't want to get home too early and have to put the kids to bed - that's what I was paying the sitter for! Anyway, they had a painting on the wall that looked EXACTLY like little Roy. We got the name of the artist and Shawn emailed her today about the painting.

Tonight, me and the kids, and thank God, Anna (my asperger's babysitter), went to the fair. Roy was there - not walking in the circle, but tied to the fence. I took Julia over there to see him. She, of course, loved him. I walked over to the pony ride person and asked when Roy would be back out...she looked at me inquisitively, and then at Julia with her brace on and obviously not a normal kid, and she said she wasn't sure when he would be out. I asked who owned him and she said, "my sister" and pointed to a woman who was out walking with a kid in the pony ring. I, half jokingly, said I was interested in buying him. She yelled to her sister, "HEY, this person wants to talk to you about buying Roy". When the ride was over, the sister, Kurin, came over to talk to me. She said she wasn't sure he was for sale, as he was her son's "therapy horse". She told me her son was autistic - and now 10 years old - and that he had a deep attachment to that horse and it would be up to him when he would leave. I introduced her to Julia and told her about Julia's affliction and that Julia rides weekly and that I am a veterinarian, and that I understood her son's attachment and that I had expected no as an answer, even before I knew the whole story. Kurin looked at Julia and asked if she wanted to ride. We put Julia on Roy and Kurin took Julia on a 20 minute free ride around the WHOLE fairgrounds (while Anna, bless her heart, watched Jack). We talked about special needs kids, her son, treatments she has done, his progression, etc. Towards the end, she said that she actually was thinking it was time to get her son a bigger horse, as Roy is tiny and her son is big, but she was afraid about where he would end up. But she seemed to like Julia, and I think, me, and we had a mutual understanding of what it means to raise a special needs kid, and she said she would consider it, but would have to ask her son. She introduced her son to Julia.

Later in the evening, her son saw us and came over and said, "I think it would be OK for RoyBoy to go with Julia". I almost cried. I spoke with Kurin again, we exchanged numbers, and we are both going to think about it. I just need to find a reasonably priced place to keep this horse that is not much bigger than a Great Dane. He is only a five year old pony, but looks 18, and does not spook at all. She said she wanted to rename him EeeOrr (or however you spell it from Winnie the Pooh, because he is so mellow. Really good pony. ANYWAY - CRAZY!!!!! All because SHAWN, who isn't even a horse person at all, fell in love with the sad looking thing yesterday at the fair. I hope I can make this work.

THEN.............. a little later, I went down the big slide with Julia and when we got to the bottom, there was a woman there who saw Julia and came up to me and asked if she was autistic. I, of course, said, no.....she has a brain injury, blah blah blah....and she said, well, my son is autistic. He is 10 years old. He didn't learn to talk until he was FIVE and now talks. She owns a little shop here in castle rock called "Regina's" and asked me to keep in touch. Regina's is ACROSS THE STREET FROM SIENNA'S where Shawn and I had our drink and saw the picture of the horse that looks just like ROY!!!!!!!!!!!!!!!!!!! I AM FREAKING OUT! What a good night!!!!!!!!!!

THANK YOU GOD for your "little" displays of caring and helping lately!

Susan

Met with the "Life Coach" today.........it went well, I think. We talked for about an hour. Mostly the conversation went towards letting it all go to a higher power - God. Well, as several of you know, I have been wanting more spiritual enlightenment for a while. My problem has been, time, and finding the right church.....i don't like the traditional churches so much, but find the arm waving a little much for my style. Anyway, I agreed that it would be great to find peace in this, and he prayed with me and prayed for me to have the Lord more effectively in my life. I agree, but also disclosed my anger about what God let happen to my daughter. So, we will see. He is off to Germany for treatment of cancer (I didn't probe on what type, etc....), but he seemed sincere and wants to help however he can. He has two daughters my age, both with young children, and was very interested in the whole vaccine thing.....I, again, told him I am not anti-vaccine, but think people need to be educated. I hope the relationship continues. We will see. He seemed like a very compassionate man who was suprised at how open I was willing to be with my issues. I just want help. If he can - great. If he can't, well, I didn't lose anything either. I am not going to hide my issues from those who want to see my life go in a positive direction - which is what I want. I know NOBODY can FIX it, but any direction, if positive, is appreciated.

Susan

Interesting Day yesterday....

So, yesterday I called someone who had come into my clinic and given me his card and brochure - he is a "life coach" if you will, and works with people who are struggling with life's stresses, etc. He had come into the clinic on Friday and for whatever reason gave me his info. I asked him if I just looked overly stressed out or if he gave his info to everyone, and he said, "no, something just told me to give it to you". We are going to meet tomorrow to talk about some of my "crap" and see if he has any more positive ideas for me to improve my family's situation. He also told me he wanted to do this at no charge......I asked him why - what's the point in that for you, and he just said it wasn't all about the money. So we are meeting tomorrow (in a public place)....hey, you have to be careful these days! But I have a good feeling about him. Then, MINUTES after I got off the phone with him, I got a call from someone I had met at a neighbors house on Friday who is an EMT, but also a chiropracter, and he asked if he could come over last night and treat Julia - again, I said of course and offered payment - which he declined. He used some "activator" thing on her and said he would do it a couple times a week and just see if it helps. All these complete strangers coming out of the woodwork.....its kinda freaking me out! Little angels everywhere.

Susan

feeding dog

Julia has always loved to feed Shawn's dog, Dakota. We usually say, do you want to feed the dog and she grabs the bowl and walks to the closet where the food is. WELL, tonight, she grabbed the bowl without us asking, and WE ASKED HER, do you want to feed the dog, and she IMMEDIATELY shook her head, YES. Immediate response. This is 100% new. Could it be the food?? Who knows, I am not saying it is, but it was very different!!! :)

Amazing..............

So, I have been trying to get Julia set up for an Augmentative Communication Evaluation for about a month now. Lots of paperwork, phone calls, etc etc etc.....and FINALLY the woman called me back last night to schedule it. She told me the appointments are always on Wednesdays, to which I said, PERFECT, because I am off wednesday mornings (well, off from work, julia has PT OT ST wednesday mornings). So, she said, the first available appointment we have is on Wednesday NOVEMBER 18TH at 9 am and it will need to be a 3 hour appointment. THIS IS OVER THREE MONTHS FROM NOW!!!!!! I could not get it through my head that there is such a long wait, as that means there are soooooooooooooooooooo many kids that need this service - so many kids that have such severe communication issues that they need a communication device (computer, etc) to communicate with the outside world. This led me to think about how there are NO special needs schools in Douglas County. One of the wealthiest counties in Colorado, with a TON of kids, many of which I am sure have delays of some kind or another - espeically with the autism rate at 1 in 150 boys now, and no place for them to go and recieve the intensive interventions that may benefit them! I am just shocked. Maybe this is my calling? To get out of Veterinary Medicine and vaccinations and do something to help all these kids????? But this, of course, requires millions of dollars and I have NO IDEA how those sorts of things get started, and liabilities, etc.....so likely will just remain a dream of mine, but it really should be done! I am sure that there are many, many parents in my same boat (but who are significantly better off financially) that would appreciate something like this HERE - not in Denver or Lakewood or Ft. Collins, etc. Just a thought.

Diet change

Well, after much reading regarding autism and gluten free/casein free diets, we are trying it. I don't have a whole lot of expectations, but feel if I don't try just because it is "hard" and expensive, then I am not giving Julia every chance possible. So, we are on day three. I went shopping and spent about $160 for enough food for about 10 days.....and am still not sure about all the "rules" etc, but am doing my best. I hope to get her in to a nutritionist who specialized in autistic kids or a DAN! (defeat autism now) doctor soon for some guidance. I hope I am not just throwing thousands of dollars away for no reason, but my gut tells me to try, so I am. Those of you who know me, when I say I'm going to do something, I do it, so I am doing it. I have read all the autsim websites who swear by it, and all the other websites that say it is just desperate moms reaching for anything to help their babies, and wasting their time, energy, and money as there is no documented proof - but my view is, she has to eat....right????? So why not give it a go. Again, I know she does not have an autism diagnosis, but I think she has signs.

Will let you know if things improve. If anyone wants to send Whole Foods gift cards - they are welcome to! :)

Susan

The vaccine Julia got....she must not have been the only one.

http://www.fda.gov/BiologicsBloodVaccines/Vaccines/ApprovedProducts/ucm123798.htm

Don't know why my links don't work anymore - please cut and paste.

Words we need right now.....

The Light of God surrounds us.
The Love of God enfolds us.
The Power of God protects us.
The Presence of God watches over us.
Wherever we are, God is, and all is well.

Therapy today....OUCH!!!

Julia had quite a day in therapy today. First, in PT, her brace (finally) came in. They originally said it would be a short one, but they decided to order the taller one to see how she did with it....if it still rotates her foot in too much, they will cut it down. They brought some shoes to go over the brace, but didn't have the right size....the 8's were too small, and the 10's are HUGE. THey are going to order some 9 wides for her to try....in the 10's she looks like a clown - they are so big, but she did really well with them. She got to ride her favorite bike (Freedom Concepts, I think, makes them). It has a seat with a back that she can be strapped into, and straps to keep her feet on the pedals. She is not real good at pedaling yet......won't use the left leg....but her PT is working on that.........

Then on to OT and Speech. In OT, they casted her right arm today to make a removable cast for "restraint therapy"...where they restrain her right arm and force her to use her left more. Anyway, they put the cast on, let it dry, and then were cutting it off (it will be a removable cast) and they cut her hand pretty good with the cast cutting shears. I knew they did that when she started screaming - they thought she was just fussy because she had to hold still, but I know her cries better than that - she was hurt. They got the cast off, and sure enough, she was bleeding. Not real bad, but I am sure it did hurt. She will be fine, but poor baby. I didn't make too much of a stink about it, as it was an accident and these things happen, but I did feel terrible for her.....

So, starting tomorrow, we're strapping up her left foot and her right hand! She's going to have a happy day in daycare! Sorry Dawn!! :)

I tried reaching Julia's attorney today with some questions regarding a time frame on her settlement, but didn't hear back. The last time we talked he seemed to infer that it would be a while, and that it may be better if we waited even a year or more to settle to see where she is at cognitively as she grows up. Anyway, just waiting to hear back. I want to sign her up at a very structured (and very expensive) school if her settlement will come relatively soon. I will work to pay for it until the settlement if I have to, but just need more info from him. I'm sure I will hear back soon.

Talk to you all later!