LIfe is still going....

It's been some time since the last time I wrote.  I debated on stopping the blog, changing the title, etc..  A lot of changes have been made in my family and I still don't know how much I can write and not write.   One huge celebration was that we celebrated the OFFICIAL ADOPTION of S and M.  They are now and forever will be our little ones!

Now that the adoption is final, I have been tossing the idea of writing a book about our journey. However, I think that I will add that thought into the CRAZY pile, because as much as I want that to happen, I don't see it happening anytime soon.

Let's just jump in:
S has been going to Behavioral therapy at Children's Hospital Autism Center on a weekly basis.  As you most know they didn't diagnosis her with Aspergers or PDD-NOS (She makes eye contact!) however, they realized that the therapies could be beneficial to her due to her lack of communication skills, and understanding.   She has really improved in a lot of areas, her fits are not a 20 min. hitting and screaming fest.  At this moment she is using an "emotional toolbox" That is a box with a bunch of different calming techniques (breathing, reading, jumping etc...) when she gets upset I send her to her room to find something to calm down then after we talk about it, use an emotional scale to show where she is at, then we have to write it down.

She also has a "play box" since she has a hard time playing or creating her own play.  In this box is a bunch of different activities that she can pick from, then we set a timer for 30min. for the chosen activity.  She is getting the handle of it.  My life is full of charts,  sometimes they work and sometimes they don't.

The whole point of the charts is to teach her to do this stuff on her own, but I'm the one tracking.  At times I want to throw them all away and just give up. "SAY FORGET IT!! I"M CRAZY." Then something or someone sees a change or notices a behavior and I know I'm not. 

Overall her schooling is doing very well. She is above her grade level in most areas and she has friends.  She is still having a few social issues that the school is trying to help with.

So what is the problem then - It sounds like she's doing great?!  Believe me there are still plenty of issues that ensue.

I love her so much that I would literally die for her, I would take my own life if I knew it would someway help. Over dramatic much? No it's not.  Everything I do for her is too try to shape her into a functioning adult that will make rational choices.  Her choices now have NO LOGIC, lying, yelling, etc... it worries me.  It happens at home mostly because they say we are her "Safe Haven" she loves you the most and can let it all out.

Isn't home the most important part in ones life? Home is where you truly become the person you will be.  As parents we are the ones that shape our children, not the teachers.  We are the ones... that matter.  If your home life isn't good, then nothing else will be. So what do you do when things are so crazy at times, are these the memories you are making? 

No they aren't because even during the hard there are tons of wonderful!

Journey

Today I am sacrificing my 60 day commitment to Insanity (yes, I am a sucker for info-commericals) to blog.   We've have had our highs and lows.    This is regarding some other personal issues that I don't quite share here.  However on the other front of life things are going good.  S has been going to  Pivotal/ Social therapy at Children's Autism Institute once a week with Daddy and I.  The tools from the last couple of meetings are very helpful.  We have been working on prompting S to converse and talk and this week is a lot of one on one social play with us to help build those skills.  To her it's fun, to us we see all that we don't think is quite right/appropriate.  I am learning to let this go and just enjoy S for the blessing that she is.

We received the report back from Children's and no they didn't diagnose her with Aspergers.  To tell the truth they don't know quite where she fits.  They do know that she needs these therapies to learn skills that she doesn't have and that she lacks all things that people with Aspergers do however, there are a few things that don't line up. We will take it six weeks at at time.

Daddy and I still feel that it is Aspergers (at least I do) but we believe that S is so young that it's hard to see that now.  We decided to wait at least two years to re-evaluate then we will see where she is at.    The hard part about diagnosing S is that she is our adoptive daughter.  They don't know a lot about her infancy, even though I have described it time and time again ( I did know her).  They want to say it's Trauma (it's not we've already been down this route).  I know that she was not taught correctly at a young age and therefore missed out on some prime skills that you learn at these ages which has even hindered her more so.  She is very young for a six year old, in all areas.    We are learning to be patient, to take the help that we are getting, to grow from it and in time things will change one way or another.  Girls with Aspergers are rare and I find that most people don't know about the differences between boy/girl.  Oh well... one step at a time.

On the adoption front... it seems like the adoption court date is taking forever to receive.  We are anxiously waiting.  S and M keep asking about it, so do the other two and for all of us it couldn't get here soon enough.  Please keep praying that it comes soon for so many reasons.

Our anniversary of two years has come and went of being blessed with S and M in our lives.  These two have grown so much and so has our family.  They have taught us so much about Love and the never ending love that God instills in our hearts.  Mommy, Daddy and J and K love you both so much! xoxo

One thing that I never mentioned here... is that I have lost a child in my life as so many women have.  It's one of those things that you never know if your going to stop thinking about it.  I was in my early second trimester when we lost ours.  I believe that everything happens for a reason and God took our child to bless us with two others that so needed a family.  Our third little bundle would have been born on October 15, 2009 instead S and M came to live with us on this exact date!!  We could not have planned this and God's infinite wisdom knew.  So as we rejoice in this date, I also in my mind and heart count down the age of the one lost...

Next week is S's IEP meeting, I feel so lost with that meeting.  There is so much to note and say and I don't even know what to do. I've been in them before and you can just get ran over if you don't know what your doing.   S's behavioral therapist is putting together some notes for me so hopefully that helps.  I will take any tips if anyone wants to share...


FUNNY S'ism - We are in the dressing room. S is trying on clothes... She asks me "Mommy why do you have to put your milk in?"  Me: What Milk? Where? I don't have any milk?   S: "You know mommy in those (makes cupping hands over her chest)"  Me: On no milk in those... this is called a bra and when you get older we wear these like an undershirt.

GOTTA LOVE HER!!!

Vacation

Last week I took J to the east coast to visit my sister, brother-in-law and BEAUTIFUl NIECES. Ahhh... the innocence of my nieces.  M is only 7 months old the sweetest little baby ever.  Many of my days were spent rocking her to sleep and giving kisses as she is not old enough to push you away. 

O is almost 2 years old and every bunch a two year old already.  She is so much fun, her laughter is music to the ears.  Her excitement and innocence in life is one of the things you can't describe as you watch her run around.

O and J

While there J and I stayed with my sister's mother in-law in this beautiful historic victorian home. 

We took J to everything from the renaissance festival, to the smithsonian, to other fun east coast ventures.  J loved it.  I think he relished in the time of having mommy all to himself with four kids this happens rarely. He talked non-stop the whole trip and I could barely leave his side without him following me.  At home J is the oldest and the most independent.  On vacation we spent time reading at night, coloring and playing games.  Was it relaxing for me? Not so much but it was great spending time with him and my sister.  

I love my sister and am blessed to share the relationship that we have.  We talk almost daily about everything.  Her humor is like mine and as I tell my kids your brothers and sisters are the only ones that share the almost exact same life as you.   I miss being able to walk with with her daily and go places with her and my nieces but Thank God for technology.

Part Two of the Evaluation

** I apologize for the previous errors in this post, I didn't realize I hit Post button and I was out of town and unable to fix it.***

Yesterday was part two of the evaluation also our "no matter what they say ... our last evaluation for a while".  S was her typical self at the meeting as I watched it.  She did her best in all areas and in her communication she tried her hardest, she was talking in a baby voice (her uncomfortable) the whole time.  It's like nails on a chalkboard voice to me.

This is basically how the conclusion of the meeting went -
"While it's interesting.... There is definitely something that is not right, but I'm not sure what it is."  (We have heard this at all the evaluations and from her therapist)

- I understand this, this is what everyone says.. go on...
"While it's her memory, she truly seems like she can't remember what you said a second ago.  It's not like she says"I don't know" because she is trying to get out of it.  She really doesn't know.  Sometime prompting her helps and sometimes it doesn't.  She is delayed in her skills both in her communication, social and coping.  However, I don't believe it's Autism"

- Okay when you say Autism you are speaking of Aspergers as well, correct?
"Yes"
-Then let me ask you this. Isn't no coping, social and lack of communication skills Aspergerian (is that a word) like qualities?  You are telling me that my daughter can learn these with the right thearpies. But can't anyone learn these with therapies? And if so isn't that skill always a learned quality?
"I get what your saying.  All I can say is that there are characteristics that are Autistic like but there are other things that don't line up or she doesn't have. Like she doesn't have an obsession with anything. Be glad she's not Autistic she can really learn these skills and application. It won't be a life long thing.  However, I'm not sure if her memory is a neurological or delay.  Let's take it six weeks at a time."

-What about all her sensory issues? Her overwhelming, her sense of smell that bothers her, her bouncing and clapping when excited or anxious, Her anxiety with school, What are those? Those are not delays.
"Well I'm not really sure but I'm thinking she will grow out of it."

REALLY?!  Our conclusion:

S is going to start behavorial therapies once a week with both daddy and I joining her.  It's the same therapies that you give with Autism.  We will take it six weeks at time.  We will have a journal to keep about what works and what doesn't while we try implementing different techniques.  They already gave me different helpful ideas like when we hit a wall with S and we need her to understand something.  If she isn't understanding it at her level drop down to an even younger age level.  Let her do her baby talk but don't let her flap.

All I can say is that we will try this for now.  Am I concerned about her brain? Yes Am I worried that it will be lifelong? Yes. We all have to take it one day at time.  I do still feel it's more but I will take this for now.  At least they see that I am not crazy, that there is something wrong.  IT's interesting though that we are acting like it's autism with the same therapies but yet they say it's not.

How did it go?

S evaluation was last week and it's taken me sometime to write about it.  Mostly because to tell you the truth I haven't really wanted to share about it.  I know that's not fair that I mention it but don't say anything.  Well.. all in all I guess it went good. It went better then the one at C.A.R.E.S.

I was in the room during this testing and they were talking to her about her friends and things she likes to do.  S's conversation is never a full conversation she would answer the questions and then kind of look away.  She talked about friends that I never heard of and when asked does she play with any friends outside of school her answer was no.  If you saw previous posts that is not true.  I do take S on play dates to friends houses and one family we are really close too and go out of town with a lot plus they come over all the time. I told the lady after that S's answers were not correct.

They talked about S's rages and anxiety in the morning.  Something about her castles came up.  S NEVER PLAYS with her castles!! She never plays with ANYTHING!!! I told the doctor that makes no sense even when S has time to play she doesn't like those things. She just wakes up in a funk.

The doctor also gave S a number of IQ testing and questions.  She said that even though S's response seem strange they were age appropriate for her.  Also that she notices that S needs a lot of prompting to find the right answer.  It's not that she doesn't know it, it's just that she's not as quick as others.  She believes that S isn't necessarily Autistic but that she is delayed.

I told her I understand this however all the other intricacies don't line up.  The fact that S has this thing with smells, fits, rages, understanding of feelings, bouncing, she does this thing with her nose all the time, she gets overwhelmed when we go places (FORGET TARGET!!), etc.... I can go on and on.  What about those?  How can that be part of her delay?

The doctor said that she still needs to look over the questions and answers plus give her more testing before the diagnosis is given.  She did state that either way she believes that S needs a behavioral plan and therapies.

Basically they are saying that S can learn these skills and apply them with the right therapies.  But my question is, isn't that the same for Aspergers???? - No Social, No Coping, lacking cognitive but EVERYONE can learn and apply with time.  It just doesn't come naturally it will always be a learned action.

I'm confused..... The hubby and I don't all the way agree with the doctor but decided to drop it for two years or so then re-approcah it when S is older if we feel that she still needs it and maybe her actions aren't just passed by due to her age.

YEAH for J

Yesterday was J's turn to shine. I am so proud of him! His conference was amazing.  I was worried that he wasn't doing well. He is in a Spanish Immersion school. At his school they speak 90% Spanish and 10% english. English is introduced more and more as he gets older in school.  He is in 2nd grade is fluent in Spanish and English (first language). He is a little above a second grader's reading level in Spanish and right where he should be for English reading.

J is the big brother out of all the children.  I know that it must be hard for him. He is becoming older and is no longer this little boy that lays around with action figures and cars.  He has a hard time trying to communicate and play with S.  He loves to tease all of them as a big brother does.  He is very sensitive and sweet.

At home J makes it seem like he has no idea what he is reading or what to do.  He gets frustrated in his writing and math.  And as I have said before it's like pulling teeth to get him to do his homework.  Also his handwriting is sooo... bad.  While you can imagine what I was thinking going into a school conference.  I was prepared for the worst.  I WAS SO SURPRISED!!

The first thing that teacher commented on was "J has such beautiful handwriting."  I laughed and said no not my child. She showed me examples of his handwriting and it was gorgeous! I wanted to take it home and show everyone but they had to keep it in his files.  He has jumped two book levels in class and is a little above in his reading skills. His math is right on point and their is no concern.  He is non-disruptive and very sweet.  I AM SO PROUD!!

I informed her about S and that if she ever sees J a little upset or not focusing to let me know.  The one thing that SUCKED about all this was that J had gotten in trouble earlier in the day and was grounded with no TV, DSI, WII and had to stay in his room for the evening.  So even though I was so so proud, I still had to follow on my word.

The grounding incident had to do with S. Later in the evening we spent time reading a children's book on understanding Autism.  He asked some great questions and commented on certain things that he has noticed about S.  THis morning he was a changed boy... he was speaking so sweetly to her wanting to help her, trying to guide her a little in her morning anxiety.
VERY PROUD of you J!! You are doing so well at school!! And your a great big brother!!!

Differences not Negative

As parents I believe that we all want an amazing life for our children.  We desire hopes, dreams, aspirations of happiness and amazing life for them.  I confess I hold these dreams for each one of my children as different as they are from one another.  What they don't understand is that you have these dreams for them and why.

This week is the start of Report Card/Conference week.  I have had S's so far and I have J's today.  I didn't really go into S's with certain thoughts because I keep in contact with her teacher so much that I know what is going on constantly.  On top of having her conference yesterday we are also preparing and filling out TONS of paperwork for another evaluation regarding her Aspergers.

I know that in order to get a diagnosis it's not the positive that I have to focus on but what some would deem the negative.  I don't like to say negative, I would rather use the word differences.  Yes my daughter does not fit in the typical stereotype of a six year old girl she has her differences.

During her conference yesterday with her teacher the some of her differences were stated such as - Respecting Others and Following Classroom rules.  S has a tendency to wander when she wants and wash her hands a lot on top of touching fellow classmates often (to often).   I told her she might be walking away (wandering) because she needs to re-foucs. She is blessed to have a WONDERFUL teacher who suggested making break cards for S so that she doesn't have to use words for it but if she feels she needs one she can hand her teacher the card and go to the library or computers.  I was thrilled to hear the teacher take this initiative and suggestion regarding S.

Tomorrow is our first out of two EVALUATIONS for S regarding her Aspergers.  I am glad to say that Children's Hospital does very well with their testing.   We have been through this before and to say that I am tired of paperwork and marking answers to millions of questions is an understatement.  Since all I have been focused on lately is what my child does wrong I would like to say a few things of what my child does right.


1. She is the best HELPER in the world, and loves to do it.
2. She will give you as much cuddles as you want.
3. She can read at almost a full grade above her class.
4. She is also REALLY, REALLY good with her math skills. Since she can memorize a lot.
5. She's a great soccer player.
6. She wears her heart on her sleeve.
7. She has an amazing laugh.
8. One day she is going to make a great mother, since this is what she tends to mimic a lot.
9. She has really nice handwriting.
10.  She is reliable.
11. MY MOST Favorit thing: SHE HAS THE BEST SMILE.