Blogging about life in Minnesota, raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Sunday, October 30, 2011

Clarity

Thank you everyone for praying for us. Dean and I were able to find clarity tonight, and feel confident we're moving in the right direction. There are still a few decisions to be made but they are for another day.

I don't get it

Just when we think God has given us clarity, making it clear which direction we're supposed to go, along comes yet another decision. The waters are muddy again and we're confused. When are we having faith and when are we making foolish decisions. We know enough to know that what sometimes seems "foolish" to others is exactly when we're on the right path.

We have less than 24 hours to make a HUGE decision. Huge. Bigger than us huge. We're begging God to make it crystal clear to us.

Friday, October 28, 2011

The pleading eyes

One....



two....



ten....


20....30......




Thirty sets of eyes. All of them staring at me from my computer screen. 


All of them eyes of children I have touched, held, loved on, promised them I would do all I could. 


Whispered into ears my promise: I would scream from the mountain tops for them. I would not forget them. I would not walk away and pretend they didn't exist. I would not leave the problem for someone else. 


They are my problem now. 


My heart.

 God put them there. God gave me a gift called compassion. It is a difficult gift to carry, because it makes the heart hurt. God gave me the pain. It makes life complicated. It means that my thoughts are never with me, instead they are always on the other side of the world, in a crib, with a child who cries a silent cry. 


Eyes....begging...pleading....The silent screams "Hold me. Love me. Take me. Please don't put me down. Please no...please please....please." Pleading as I turn my back on them. I walk out of the room....the empty room....empty save all the other cribs full of more children....more eyes.....many more eyes follow me out of the room.

Lists. Descriptions. Choices. None is less worthy than another.

This is bigger than me. This is for God. Only God can do it. Which eyes God? 

I don't know which eyes. 

It's too late now

A few weeks ago I shared this video of Angela from when she was about 10 years old.



This was just five years ago. Angela seems so little, and really she is. ( in the video she's just a little smaller than Axel is now) But there is something else I noticed. Angela's speech is exactly the same as it was then. Nothing has changed. We've done private speech therapy off and on over the past few years, and since I'm at the therapy center twice a week with Axel now I might was well see if I can get Angela in too. I also want to try, once again. to work on her fine motor skills and her inability to write.

So last week I took Angela for a speech assessment. I really like the speech therapist, and she asked me what my goals were. My number one goal is to see if we can improve Angela's intelligibility a little so those who are unfamiliar with her can understand her. Angela does have a mix of problems; a combination of having Down syndrome and a moderate bilateral hearing loss. Some of her speech errors are common among people who have DS, and some are related to hear hearing loss, and some are a combination of the two.

The speech therapist was impressed with Angela's vocabulary. Not only does she have a lot to say, but when someone has a difficult time understanding her she will often change her word choice to a word she knows she pronounces with more clarity. She did this during the assessment. She has also been known to employ mime techniques. LOL

With the assessment completely, the therapist told me what I had feared. That by this age Angela's speech patterns are quite ingrained, and we're not likely to see much difference. Also, insurance will only cover a certain number of sessions and if, after that time, there is no progress they will discontinue coverage for the service. We will most certainly give it a shot, but I'm also a realist. Yes, I believe in miracles, but I don't always plan for them. (not necessarily they right way to look at things, but that's how I'm approaching this one.)

This was really difficult for me to hear. That the speech Angela has now is the speech Angela will always have. She is difficult to understand. I can understand nearly everything she says but still there are times when I have to say, "I'm sorry honey, I don't understand." Sometimes she's telling me something that is clearly very important to her, so I fake it, and pretend that I understand.

A tough pill for me to swallow this week. The first time I've been told that Angela has hit a limit, and that I have evidence in this video to back it up.

Wednesday, October 26, 2011

If you read nothing else today...

If you only have time to read ONE more thing today, make it this article. It's about my and Angela's good friend Katie Brinkman. She brought a tear of pride to my eyes this morning.

CRUNCH TIME!

There are only a few days left. Oh my gosh! Do you realize how close little P. is to coming home? How soon before you could be seeing his WHOLE face and not this blurred out version?


The family's dossier is on it's way to Serbia to be translated and should be submitted to the Serbian ministry sometime around the end of next week. In about four weeks his parents should be ON A PLANE and headed to the other side of the world to bring him home. FOUR WEEKS!!!!

Do you see the numbers on the chipin? They're still $2100 short. That's their plane tickets folks. Lets rally and get them there!

Trick or Treat!

So this is Axel's first halloween. I'm sure he's wondering what all the creepy stuff is about on the neighbor's lawn up the hill. Last weekend we went to the pumpkin patch and found great pumpkins, and in a couple of days we'll be showing Axel the joys of pumpkin guts and seeds, not to mention the infamous carving of them. (And no Dean, you are NOT getting out of it this year! You had fun at the pumpkin patch and you WILL have fun carving a pumpkin with your son, I just know it.)

When I have a new concept to show Axel but limited resources, where else is there to turn but Youtube? Seriously, you can find ANYTHING on Youtube! Is your kid grabbing people in inappropriate places while at school? There are video examples of that so you can say to your kid, "Do you see THAT? THAT is NO!" Got a new vocabulary word, like "bat" to teach your child? Yes, there are examples of both the flying and the hitting kind. So it only stands to reason that one would also find many videos of children standing at people's doors saying, "Trick or treat!" and begging from strangers!

Yesterday Axel's speech therapist was all over teaching him some of this new vocabulary while making a Halloween bag, and my job was to come home and find the videos, which I did. At speech, since Angela was along, we had her show Axel how to trick or treat using the therapist's office door. Like a kid on their first Halloween, Axel was a quick study and it didn't take long before he was correcting Angela on her technique like a good little brother. Then he realized there were other therapists in the center to say "Trick or treat!" to, and watch with great interest as they put stuff in his bag.

When I showed him the videos he was a little confused by the fact the kids were wearing costumes. (I haven't tried to explain that one yet. Too much information at once and all...) I'm sure it will all make sense once we're out there and Angela is dragging him around from door to door. She of course is thrilled! You see, at 15 she is is far too old for trick or treating, but having a little brother gets to "help" and might possibly have a bag in  her hand "just in case." And since she is so into being a patient and faking injuries, that is exactly what she's going to be, and Axel will be the doctor. Maybe I'll be the sexy nurse. Naaaaaaa I should really dress up instead.

Now if only we can get Axel to say, "Trick or treat!"

Thursday, October 20, 2011

school-recap

I have some new readers here, and feel the  need to re-cap a bit of what is going on with Angela at school. This is old news for most of you, except for the last two paragraphs which is are an update. This is a very general description, and obviously I cannot give all the details due to privacy issues, but KNOW that if your child is in this same classroom, it would be in your child's best interest to review his or her IEP, along with the the service minutes for each area.

Transition meeting, Spring 2011: High school DCD teacher discouraged registration of certain mainstream classes, saying she "didn't know what would fit with Angela's schedule". Nevermind the regular ed. students had already registered for their classes. NO mention of the Work Experience program was ever made. Quite a lot of time was spent discussing the fact Angela has an extensive BIP (behavior intervention plan) in place and that all staff would need to be trained on it's implementation before school starts in the fall.

Freshman Orientation, Fall 2011: I had heard nothing from Special Education staff. Angela and I attended Freshman orientation and there was no support staff in place. Students break off from parents. Students get their pictures done, work on locker combinations (Angela uses a keyed lock which was not available to her.) get tours, find paws rooms, get schedules, etc. Parents take care of "shopping" and the writing of unending checks. I sent Angela with the other students and stayed with the parents. It was not appropriate for her to go through this experience without support staff in place.

First day of school: I have not heard anything from special ed. staff. No idea who is to meet Angela who rides the regular bus. The first morning is confusing as the schedule is very is very different from normal. (not that Angela knows the regular schedule yet!) Angela is "missing" for the first 1/2 hour of school and is found wandering the halls by another DCD student and brought to the classroom.

Second day of school: I find out Angela is playing Wii in DAPE. In my opinion, totally inappropriate for school. It is HOT outside, so that is out of the question, but for the first two weeks students are using the treadmill and wii in phy ed instead of the gym? Also, called school to find out why Angela is in the work experience program when I have not given approval for this. It is not on her IEP. Question of what tasks are being done by the DCD students as part of the Work Experience Program that could be viewed as "demeaning" tasks by mainstream students since they involve cleaning up after other students.

Second week of school: Have asked again why Angela is in the Work Experience program when it is NOT in her IEP. Also, Angela brings a note home from school saying, "Angela needs a keyed lock." No indication what the lock is for (phy ed locker or regular locker. ) Call school and find out this is for her regular locker. Inform DCD teacher reading the IEP would be a good idea since "keyed lock" is on her IEP and is to be provided by school, and why are we in the second week of school and she still doesn't have a lock on her locker? Angela is playing Wii in DAPE a couple times per week, as well as in the Work Experience program. Request IEP meeting.

September 26th, IEP meeting: Again ask why Angela is in this program. I want her out of it. Ask why supports and modifications listed on her IEP have not yet been implemented such has her behavioral supports listed on the BIP, alphasmart for keyboarding since she is unable to write, why it took two weeks to get her a keyed lock on her locker and I had to argue with the DCD teacher about it, why there are no supports in place for DCD freshmen attending orientation, why are there no spelling or vocabulary lists coming home...and the list goes on. WEP staff spends great deal of time and energy during the meeting explaining the WEP program and how wonderful it is. (which I have no doubt it is, but as a freshman I don't think the focus needs to be on job skills just yet, how about we get her writing her name legibly, and spelling beyond a CVC level, and take advantage of the fact she finally has an interest in reading????) DAPE and WEP teachers admit that Angela is playing Wii in both classes. Up to 3 hours per week could be spent playing Wii. (But you know "It's a wonderful social experience playing with 10 people at a time versus alone at home!") I can't help but wonder how the regular ed. parents would feel if their child was spending so much time playing video games? Also, the planner all freshman are required to buy is not being used. Nobody has seen it, although it was sent the first day of school. It's been sitting in her locker every since. Apparently the DCD staff doesn't use the planner. Sadly all the years of training our kids to use a planner was for nothing. Also, while discussing the Behavior plan DCD teacher expresses reluctance in implementing the plan since they have not seen any behavioral issues since school started. I make a comment about this more than likely being because their expectations are too low but am assured their expectations are plenty high for Angela. Later that week support staff will be trained on implementation of BIP.

Last week of September: Angela finally brings home a spelling list. Not all of the words are appropriate to her ability level. Email to ask why she still has no vocabulary works coming home like the regular ed. freshman do. Also why is the planner still not being used?

First week of October: No spelling list. No vocabulary list. Nothing in written in planner. Emails sent about all 3 issues. Email sent to admin staff again listing my concerns and requesting another meeting about ongoing issues of non-compliance with the IEP.

Second week of October: Finally planner is being used...by school staff...as a communication notebook. Send an email to staff reminding them that it is NOT a communication notebook. It is for Angela, with adult assistance, to write what she is supposed to be doing each day, not for school staff to write things such as "had a great day." No spelling lists home this week although I sent no less than 3 emails about it. Finally received a response that they are giving students independence this year. GREAT! Apparently it's more independence than she's capable of since they're not coming home!!!! Email Admin staff and request another meeting about continued non-compliance with the IEP, including the fact Angela is STILL in the Work Experience Program even though the district website states in two different places placement into this program is a "team decision" but I as the parent was not made part of this team decision although I am part of the IEP team. Also this same week, logon to student portal and see that there are unexcused absences for times Angela has not been out of school. They are on days when she came to school a little late after dr.  appointments, but afternoons show absences when she should have been back in the DCD classroom.

October 17th: Morning: Bring Angela to school later after dr. appointment. Sign her into attendance office and ask about unexcused absences in the afternoon. Am told, "When a student is out in the morning, that particular teacher marks them absent in the afternoon also, regardless if they're in class or not."

Seriously? Angela misses A LOT of partial days for doctor appointments, these spotty absences showing up here and there can get the county truancy officers knocking on my door! On my way out of the building touch base with the assistant principal who happens to be working in the hallway and ask  her about this. She informs me there was just a meeting held about this same issue. Interesting. I make it clear I am NOT happy with the current situation with this staff person, which she already knows.

October 17th: Afternoon: Receive a phone call from DCD teacher. She has just now, in the 7th week of school, gotten around to reading the IEP and realized the Work Experience Program, where Angela has spent a significant portion of every day for the past 7 weeks, is not on her IEP.

GASP! REALLY???? Have I not been saying that for SEVEN WEEKS and she is JUST NOW looking at this?

Make phone calls and send emails to necessary administrative staff about the now very serious issue.

UPDATED INFORMATION!!!

I have since had phone conversations and email exchanges with both building and district special education administrative staff. We will be having a conciliation meeting next week. I have been assured that this very serious issue of IEP non-compliance is being dealt with severely. However, because this DCD staff person has been in such gross non-compliance on one IEP, there is reason to believe there are issues with all IEP's she is responsible for. It is ALWAYS important, every single year, to check your child's IEP, and never assume that your child's case manager is doing what they're supposed to be doing. The vast majority absolutely have your child's best interests at heart. Unfortunately there are a few here and there who are there for a paycheck and nothing more. Maybe they started out doing the job because of their love for the students but somewhere along the way either they lost their ability or they lost their drive. I know that we are not the first family to have issues with this staff person. Hopefully nobody will ever have these issues again.


Obviously, for the purposes of privacy, both Angela's and the teachers, I cannot give all the details, but I can tell you the issues of IEP non-compliance are very serious. But, I will say this again, please, particularly if your student is in this program, follow up on you're child's IEP. Also, if you have friends with students in the program, it wouldn't be a bad idea to compare their IEP's and make sure they're not "cookie cutter" in appearance. Remember these are "Individualized Education Plans" which means they should reflect each individual child, not every child enrolled in one particular program.

NDSC 40th Annual Convention

The National Down Syndrome Congress (NDSC) 40th Annual National Convention will be held in Washington, D.C. in July 2012, and I can't wait!!!!

The last time I went to the conference was when Angela was 9 and it was in Atlanta, GA.  It was too  hot for her there!!! Then we had to skip a couple of years. Then next year we would have been able to go it was held in Orlando. Ummm..Orlando in July for this young lady who doesn't sweat is not a good mix. Last year was San Antonio, TX and we didn't go for the same reason, plus Axel was in his halo and would have been miserable. And while there was lots of water, etc. he couldn't do water with the halo. But this year? WE ARE GOING!!!!!! Angela will be 16 and hanging out and making friends with the other young adults and Axel will be hanging with us! ;-)

Oh, I cannot wait. Now, to save money for flights and conference registration. And in D.C, our nation's capital where I've always wanted to take a look around!

Tuesday, October 18, 2011

Amazing

Amazing is the word I often use to describe our God. I cannot count how many times I have watched Him do miracles in the adoption world in the name of these children.

Do you see Little P's chip-in up there? Do you see that the total amount we're trying to raise has been reduced by $500?  Thank you to the anonymous contributor, and thank you everyone who has contributed so far. Little P. is nearly $1,000 closer to coming home!

Now, if we can get 34 people to each contribute $5....that's just one coffee at Starbucks....I can give away this little guy 

plus Signing Time's "Everyday Signs". 


Let me tell you about school

There are times when it's not good to piss off a parent. I am going to try to watch my tone, but I will admit, I am a very angry parent right now. And, let me remind everyone reading, this is my blog. It is like I have allowed you into my living room. If you don't care for my attitude, you don't need to stay. If it so happens that you feel the need to print out portions of my post to hand out to attendees at certain meetings, please make sure you print out the post in it's entirety so people at least have my words in the context in which they were intended. Just say'in.....

 Now, I am going to have to backtrack a bit.  All the way back to last spring and Angela's transition meeting from middle to high school. All the 8th graders were registering for their freshman classes, and I needed to register Angela for hers as well, which I did. So up comes the meeting and I am told by the high school DCD staff that we "don't know what Angela's schedule will look like next year so we don't know what classes she'll be able to register for." This did not make sense to me at the time, but what did I know? In my mind, a parent who has had four other high school students, her schedule would look like what I had registered her for. No? Never once during that meeting were the words, "Work Experience Program" uttered.

You see, they didn't "know what her schedule would look like" because they had every intention of Angela being in the Work Experience Program (i.e.; job and life skills class, with very limited academic time in her day.) Nobody ever said anything about the program, or that they needed her mainstream classes to fit AROUND that program, not the other way around. When the proposed IEP came I didn't sign it, because it was fine, with no changes needed. I often don't sign, knowing after x number of days the IEP goes into effect. (however, I WILL, and have signed that I do not agree when I see something I don't agree with!) The IEP was in line with Angela's transition assessment results. The modifications and supports were in place, the service minutes appropriate, etc.

Before school even started this year there were issues. Somewhere around the first or second week of school I asked why my child was playing Wii at school several times per week.

I also asked a very important question. "Why is my child in a program I didn't agree to?" In fact, I've asked that question a lot of times both in writing and on the phone, to district staff at several levels. There has never been an answer given.

The end of September an IEP meeting was held. I brought up several areas of non-compliance of Angela's IEP. Modifications and supports that at that point, four weeks into school, had not yet been put into place. The majority of the meeting time was spent discussing the Work Experience program, as the DCD staff from Angela's school spent a great deal of time and energy justifying to me why this program was so wonderful, the great things they do in there, etc. Yet nobody could answer the question, "But where is the individualized part of this education? It seems you have this program that has clearly been in place for some time, and it seems as if it is expected that all the students in the DCD program participate. How is this an individualized education, and where does it meet MY child's goals and objectives?" That question was never answered, and finally at some point I stopped listening. They weren't hearing me, so I stopped hearing them.

Now let me get picky a bit....

Spelling: Angela has been in school for 7 weeks, 6 of which spelling lists have supposedly been assigned. I have seen ONE. One measly spelling list. I asked, oh...three or four times, why no spelling lists? Finally, last week I was given an answer for the very first time. "Spelling lists are issued every week. We expect the students to be independent." I was told last week, "If you could be a mouse in the corner with Angela during her school day, you would see a young lady who is learning each and every day to be more independent along with the other freshman and doing a stellar job with everything she does." Ok, well clearly Angela is being given more independence than she is able to handle since she's not bringing anything home and I  have practically had to YELL that she's not, and STILL nothing comes home!!!!

Vocabulary: All the freshman are required to purchase a vocabulary book at the beginning of the year. I can only assume that they're assigned words at various intervals (weekly?) I did not purchase that vocabulary book for Angela, assuming that she would have a different list since she's clearly not at that level. I have yet to see a single vocabulary word.

From 1st through 8th grade, Angela has used a planner. For the past two years, she has written the information herself, and an adult has written a translation underneath since Angela is not really able to write legibly. At the high school level, all freshman are required to purchase a planner, and I purchased one for Angela. Apparently none of the DCD students in her school use one since the DCD staff is clueless as to what a planner is to be used for. It to inform them it is NOT a communication notebook! It is for ANGELA (with the assistance of an adult) to write down what she is supposed to be doing each day! Not for the adults to write things like, "Angela had a great day!" Ummm this his high school. I would assume Angela had a great day, and if she didn't the planner isn't the place to be writing it!

So lets go back to that Work Experience program, where Angela spends a significant portion of her day. A program that I never approved. That I have asked, time and again, "Why is she there?" Keep in mind that when a student is in a program such as this, the goals and objectives listed on their IEP are being worked on within the program.

Today I received a phone call from Angela's DCD teacher/case manager. It has just now....week 7 of school...come to her case manager's attention that the service minutes for the Work Experience program are not on Angela's IEP.

For those familiar with the world of special education, you may now pick your chin up off the floor.

If you're not familiar with special education this means, in the most very basic terms,  that for all the hours each week Angela is in that program the district is in non-compliance with her IEP.  Like if you sent your 5th grader on the first day of school, and he was coming home with work that didn't seem right. You keep asking questions, because you think maybe they might have put him in the wrong class. But on the 7th week of school they call and say, "Oops, we accidentally sent him to 4th grade all these weeks!" It is very much against special education law.

So, what exactly HAVE they been doing with Angela for the last 6+ weeks of school? What goals and objectives have they been working on since they clearly hadn't even LOOKED at Angela's IEP to see that HERS DON'T MATCH?????

Let me tell you something. I have been around the block a time or two. Several years ago I was working in another district where Angela was also a student. It was brought to my attention there were issues with Angela being pulled out of class at inappropriate times that the classroom teacher knew didn't match the IEP. After a long, drawn out mess, a complaint was filed with the Department of Education and an audit was conducted. Not only was Angela's IEP pulled, but they also pulled a certain percentage of random IEP's of other students, which based on those findings, turned into the state pulling ALL the IEPs in the district. It just so happened that every student's IEP within one specific program at the district's elementary level was nearly identical. For those not familiar with this process, this would be like everyone having the exact same dosage of insulin at all times. It doesn't work, and in the case of Special Education and IEP's it is illegal. I can only guess that someone this year in Angela's school assumed her goals and objectives were the same as everyone else's. Why would that assumption have been made?

I do not want to send Angela back to this classroom. After raising my concerns time and time again, the case manager still did not see to it the district was in compliance with my child's IEP. To me it is clear she is not able to meet the needs of my child, and the trust I am supposed to have for my child's teacher is gone. Well, let's be honest, it was shaky since the first day of school. I'm one to trust my gut, and I've had questions from day one. The first week of school I told Dean I wanted to move and I started looking at houses in a different district. I didn't feel I have the stamina for this. Angela has four years of high school and Axel is coming up right behind her, not to mention whatever other child we bring home this year. I HAVE to trust the staff in the school we're in. Right now, I have no trust what so ever.

But you know what? I know too many other parents who HAVE moved out of the district for this very reason, and they warned me. I prayed. I hoped they were wrong, and that by the time we got up here the issues would have resolved themselves. But I'm beginning to see a pattern in my life. The staff at this school does not know me. They have no idea that God gave me the tenacity to take on corruption in international adoption and travel to the other side of the world...repeatedly......even under threat of physical harm....so that others don't have to go through the same thing I did.  They have no idea that in the late 80's God placed my 22 year old self at a podium in the Rotunda of the MN State Capital where I spoke before hundreds on behalf of those with developmental disabilities and the ADA so that the children I didn't know I was going to have would have a future.

I fought for that future, for inclusion for my children, way back in the '80s. I'm not going to give it up that easily. I stated in a recent email to school staff, "It seems to us that inclusion is not a priority at ***. Perhaps some mainstreaming of certain classes, but "mainstreaming" and "inclusion" are two very different things. What I'm seeing, and what has been explained to me, is a very good description of segregation, and it's not what I want for my child. She is not going to spend her adult life secluded in a room full of students who have various disabilities. I don't mean this as an offensive statement, but one of fact. Angela has a broad spectrum of peers, both with and without disabilities. Angela is also a minority, which means she's going to need to function in a community where the majority of those around her are non-disabled. She will not be successful if her entire high school career is spent in a self-contained classroom......Her typical peers don't know her. They know who she is and are willing to say hello to her in the halls our if they see her out in the community, but they have no idea who she is." 

Sunday, October 16, 2011

Look back with me

In April 2010 I traveled to Serbia, knowing my life would be changed, but not really knowing how. As the words of the song so adequately say, "I saw what I saw and I can't forget it..."




I vowed to not let anyone, certainly my blog readers, forget these children are out there.  I don't know of anyone advocating for  the fatherless of Serbia to find families. People, there are many. I have personally 50 or so, and seen hundreds. HUNDREDS. But because Serbia's laws are different than the laws of other countries. Posting pictures of Serbian children on photo listing sites is illegal. I guess that means they're not worthy of advocating for. Maybe it's really because there is no money to be made since their pictures cannot be listed.  Even families who have already adopted from Serbia are silent.

My heart aches for the children of Serbia. I will have more posts about the issue coming soon. I've been working on them for awhile, my life is just very busy with school, my kids, and life in general. In the meantime, there is one Serbian child you can help RIGHT NOW. Little P.

I can tell you that Little P. sleeps in one of the many rooms in the orphanage that are identical to this

I can tell you that he eats his meals in at a little table in a hallway. See them? Way down at the end of the hall? Between 8-15 children sit around those tables, eating a rushed meal, hurried along by caregivers who have other things to do. 
Their food is put before them already prepared, already portioned. The children never see a kitchen; never see where food is kept or prepared. They don't see a refrigerator full of food. There is no such thing as a "grocery store" in their vocabulary. They've never seen such a thing. 

I am incredibly grateful for the funds received Little P. so far. In fact, the little bear has found his way to a new windowsill! Sadly, we're still far behind our goal....35 contributors away from my being able to give away another figurine. Will he find a new home??  I know he will, because God is bigger than this, and I know He intends to get P. home, and we....all of us who are reading these words right now...You....You who feel as if you want to turn away and let someone else worry about these kids because you don't have time...... you, me, we are all conduits to getting Little P. home.

Saturday, October 15, 2011

Axel's phrase of the day

Have I mentioned Axel's language is exploding? Every day he comes up with something that either blows us away or totally cracks us up. Sometimes both simultaneously. LOL

I should put a key at the top of my blog, something like anything in conversations that is in "..." is spoken and anything italicized is signed, because our conversations around here are quite mixed!

Today we had just arrived home from the pumpkin patch. I flopped on one couch, Dean on another, and Axel on the recliner, which is kind of turned away from where I was sitting so to look at me Axel had to turn in the chair.

(picture Axel, hanging over the arm of the chair.) "Mom."

"Yes Axel."

fart ....(insert long pause while he thinks hard)...... need bathroom 

"Well, then you'd better go!"

Ok, this was one of those "crack us up AND blow us away" things. First of all, the sign he used for "fart" is not one I've taught him. We use a different sign, so this is one he brought home from school. Second, he signed, "NEED bathroom." Now, I have asked him before, "What do you need?" or "Do you need to go to the bathroom?" but I've not modeled a sentence such as, "I need bathroom", so he learned that at school. Third, this just plain CRACKED US UP for obvious reasons!

Thursday, October 13, 2011

Only $122!

We only need to raise $122 every day between now and November 4th to get little P. home!!!! We can do that, can't we???? Sure, I don't have any fancy electronics to give away this time, but Adeye over at No Greater Joy Mom is giving away a $500 gift card. Once you make a donation to P's fund, go back over to Adeye's blog and leave her a comment to let her know!

Lets get him home, shall we? So you can see his beautiful little face!!!!!

Rhinoceros

This morning while I was helping Axel brush his teeth, he told me in sign, "Crocodile."

"What about crocodiles Axel?

"Elephant." he signed, laughing at the very funny noise he's learned to make.

"Crocodiles and elephants. Hmm...are we talking about the zoo?"

"Rhinoceros!" he signed, laughing at the sign he finds so silly, as well he should since Rhinos are silly looking animals.

This funny little conversation was great for two reasons. First, a year ago he had NO communication at all. Second, he was showing me signs that I had not taught him, he'd learned them at school, and was able to tell me in his own way that they're talking about zoo animals at school.

It's been so fun to see Axel's language take off since starting school this fall. This was definitely a good decision for him. Yes, there are drawbacks, such as a regression in speech, but his speech was not progressing enough for it to be a method of communication, at least not at this point. Someday though, we hope that it will. Right now he's gaining communication, something he's never had before.

Angela and Dean are taking ASL classes together on Monday nights now. The class is taught by Axel's teacher who is deaf. I think he's enjoying it. There are a couple other parents from Axel's class going as well which is nice to hear. The classes are offered practically free for parents of kids in the program.

Wednesday, October 12, 2011

mom

Axel says "Papa" all the time. It sounds like "Papaaaaaa". He rarely says mom. He will say it in wrote phrases such as "Mom help please." but that's it.

A few days ago, Axel was in the living room, and I was in the kitchen. "Mom." I heard from the other room. It wasn't loud, or excited. Just flat. "Mom." Almost like he was looking at a picture of me and labeling.

I came around the corner, "What's up buddy?" He pointed at the t.v. "Signing Time Rachel please." he signed. Oh wow! This was a huge step! "You bet I'll turn Signing Time on for you!" and he smiled his big smile.

A little while later, I heard, "Mom." This time a little louder, and with just a little more excitement behind it.

"What do you need Axel?"

"Outside Papa."

"Oh Papa is outside? Lets go see what he's doing and I bet you can hang out with him. Go get your shoes!"

He RAN to the closet!

Later that day we were in the car. From the back seat, "Mom!"

"Yes Axel?"

"Mcdonalds." he signed with a big grin when we were about 1/4 mile from our neighborhood McDonalds. (Angela's waits until we're driving past, Axel asks before we get to it. LOL) Little smartie pants.

"You know Axel, I could go for a coke myself."

Yesterday we stopped at the grocery store, and I discovered Axel is now truly one of my kids. About 20 times I was tapped on the back of my shoulder (this was brand new for him) "Mom!" and I'd turn around. "Cookies." he'd sign and point to where they were. "Yes Axel. We have cookies at home."

Tap tap tap "Mom!"

"Yes Axel."

"Pancakes."

"Yes, Axel, we have pancakes at home."

Some of this was him wanting to buy stuff, but also just wanting to show that he knows the names of things. It's so fun to watch this. But  mostly, for me this week, it's fun to finally hear him calling me Mom without prompting.

Sunday, October 09, 2011

Yet ANOTHER challenge!

Brianne, over at This Is Our Plan A, has come up with a wonderful idea for those contributing to Little P's fund to bring him home. Oh, I LOVE this idea!!!! Not only are you helping to bring him home, but you're going to literally be covering him with love!

Just two more!

If just two more people contribute $20 or more, the bear and "Playtime Signs" DVD will have a new home!

Saturday, October 08, 2011

Fog

 I get migraines about every two weeks like clockwork, and they knock me down for three days straight. I function through them because I have no choice, but that level of "functioning" leaves much to be desired. Being upright, in daylight, is a major undertaking, much less getting the kids to the bus, or myself to one of my own classes. Understanding physics concepts just isn't happening on those days. (who am I kidding? It's not happening most days!)

So about 18 months ago I finally got fed up enough to see a doctor and start taking medication for my migraines. One of the side effects is that in the first few weeks you could feel "a little foggy". I think that first week is when I lost my car...for an hour and a half...in the parking lot at the Mall of America. That was when the reality show "Mall Cops" was on the air and I kept waiting for the guy to come around the corner on his bike but he never showed up....sigh....

After a few weeks all the side effects went away. While the medication got rid of my migraines all together,   I started having problems with my esophagus, and we weren't sure if they went back to this medication so I stopped taking it. Well, if you've been reading here for the last six months or so you know I've been going through a diagnostic process. One of the things I did find out is the medication had nothing to do with what was going on. So, this week I started taking it again.

Let me remind you of the side effects that can happen the first few weeks you're on this medication. It can make you, "a little foggy".

Tonight I was talking to a friend on Facebook. Dean was out on the porch having a smoke and I went to tell him something, only he wasn't there. Hmmmm...Did he go to bed without saying goodnight? (We have an unwritten rule about that.) I went into the bedroom and flipped on the light but he wasn't in there. Well what in the world....Maybe he's in the shower? I went downstairs and he wasn't in there either. Where in the world did Dean go? It was about that time he walked in the front door...with the ice-cream he'd gone to the store for. Oh yeah. I forgot he was going to the store for ice-cream.

My entire day was like that. I spent most of the day studying for a physics test which will take place on Monday. Only I'd be working on one problem, only to find myself working on a totally different problem. I really don't hold out much hope of passing this test.

Woot Woot Woot

11 contributors so far, with a total of $215! YAY! Just a little closer to getting Little P. home!

290

290 is how many people visited my this blog in the last 24  hours, and yet not even a single penny was contributed to Plan A.

I'm *almost* speechless. It takes a lot to bring me to speechless! I'm sure you already know that. If 290 people had each donated $5...or a cup of starbucks...we would have been half way to our goal. If they had each gotten ONE person to also contribute, we would have REACHED our goal in just one day! So easy. So very easy. I know there are a lot of people asking for adoption money all over the internet. I know...I really do. You also know that I rarely ask, and usually it's for the kids in Serbia. The TRULY forgotten kids who nobody else is advocating for. I don't see ANYONE ELSE advocating for these children. It seems if there is no money to be made, it is not worth advocating for them. Where is their hope? YOU are their hope!

So I'm going to up the ante for Little P. Here's how it's gonna work:

The goal is to raise $3,000.

As I stated before, the person 10th person to contribute $20 or more will get this cute little bear. He stands approximately 2 1/2 inches tall. The heart on his chest I made in the autism awareness colors, since Little P. is diagnosed with Pervasive Developmental Disorder (PDD) which is on the Autism spectrum.
But I'm also going to throw in this DVD!
Signing Time Vol 2 "Playtime Signs"


For the #50 contributor, not only will you get this cute little guy in the DS colors, handmade by me,
But you'll ALSO get Signing Times Vol 3 "Everyday Signs"! 

For the #75 contributor, you will receive my favorite naughty little kitten, sporting a DS ribbon...
AND Signing Times Vol 13 "Welcome To School" DVD!

At the end of the day, you'll know you helped bring one little boy home home. In just a few short weeks you'll get to watch him leave these walls

and experience a family for the first time in his life. Just think how you've watched Axel change over the past 10 months. Now you'll get to watch P.! And to make everything nice and easy, here's the chip-in button. Right here for you to push "chip-in"! It's that easy. 

Thursday, October 06, 2011

This IS their plan A!

Many of you know that I've spent a lot of time in Serbia in the past 18 months. On my first trip, in April 2010, I walked these halls...

I met children who waited.....

And I met others who had already given up. Turning their minds inward, shutting out the world.

It was among these very same walls that I met Ianna, the child we will never stop praying for, who we  hope to someday add to our family.

And I also met this beautiful little boy. We'll call him "P."

He has the biggest dark eyes ever; big enough to swim in, I'm sure. They captivate you. P. was one of the children who were advocated for on Reece's Rainbow. Unfortunately after our adoption it was realized that the posting of Serbian children on any photo listing site was a violation of Serbian privacy laws, so all the children were removed. But not before his family found him!!!!

 Meet Brianne and Jay R.


They are a young couple with a background in special education who have decided to start their family through adoption. This is their "Plan A"! Not only have they stepped forward to be P's mom and dad, but they're almost there! Last spring, although there was some initial confusion, Jay and Brianne were able to work directly with the Serbian ministr to confirm that P. is indeed registered for international adoption, and they have already been given "pre-approval" to adopt him! They spent the summer completing their home study and it is now ready to send to Belgrade for translation. That means that in approximately three weeks they will be given a travel date! This actually puts them on the same timeline I was on for Axel's adoption, so they should be traveling by the end of November.

 But they need our help. Because of the confusion surrounding Serbian adoption over the last few months, many families were afraid to get their hopes up or do anything in the way of fundraising. The Serbian ministry has worked hard to verify the status of every child on the list and work with the families who are coming for them. Suddenly families are preparing to travel! The R's  have very little time to come up with the last of their funds. But guess what? We can help them get P. home for Christmas! Do you remember this video? Taken on December 15th, 2010?


Jay and Brianne could be  making that very same video with P. BEFORE CHRISTMAS! What a wonderful Christmas gift that would be for a little boy who has never, in his life, know the love of a family.

So here's what I'm going to do.....

Over there on my left sidebar, there is a Chipin for the R. family. All you have to do is click on it and enter an amount you feel you can contribute. It's that easy!
*note* this adoption is not connected in any way to any organization. All contributions go directly to the family. 

Now, some of you know that I have been messing around with scultping lately. Nothing exciting of course, but it's been fun, and I've been wondering what to do with these things that are now taking up space on my kitchen windowsill. Now I know.....

For the 10th person to contribute $20, I will send you this little guy. He is about 2 1/2 inches tall. The colors of the heart on his chest are the Autism colors, made because P. is diagnosed on the autism spectrum.

For the 50th contributor of ANY amount (technically that means you could win more than one item!) I will send you this cute little guy. He is about 2 1/2 inches tall, and is constructed out of the DS colors.

To the 75th contributor of any amount, I will send you this cute, but naughty little kitten, adorned with a ribbon in the DS colors.

No, these are not expensive items, nor are they highly sought after electronic gadgets. They're handmade by little 'ole me, with love. But I'm not done! Please help spread the word by posting this on your blogs and your Facebook pages the leave a comment here and perhaps my fingers can find the time to make something for your windowsill as well. ;-)

In the meantime, you can hop on over to their blog, and watch the story of P. and his new family unfold. 

Wednesday, October 05, 2011

Homeschooling

Axel has Shingles, aka Herpes Zoster, aka re-activated Chicken Pox. Lovely. It's cramping my schedule. Fortunately we discovered it very early and got him on the anti-viral medication so it didn't progress to the painful infection it usually is. He's just itchy. (this pic does not do the rash justice. It is more red and inflamed looking, and now a little blistered.)



With shingles, since its not an airborne rash like chicken pox, it can only be transferred by skin-to-skin contact. That means as he's been on meds for 24 hours and the rash can be covered he can go to school. So yesterday day he got to go to school....for a whole hour! That's when he started showing up with a few spots on his face and the back of his neck. Back to school I go.

We came home and did some school stuff. The last time I worked with Axel, he was able to count 10 objects consistently, 12 was a little shaky. I haven't really worked with him on it since school started. Wow! Yesterday he easily counted 15 objects, and 20 with one correction. We also did some writing yesterday and he's doing a great job with many of his letters!

So we have this new video monitor, which I am LOVING! We're learning lots of secrets about Axel. ;-) At the moment he's in his room playing. First, he set himself up doing a counting activity with 20 objects, which he then adjusted and changed it to a pattern activity. You know, since he's having trouble with that concept and all. Then he had his bear do some sight word flash cards, and now he's putting playing cards in order. I guess I don't need to worry about working on school stuff today, since Mr. Independent already took care of that.

Tuesday, October 04, 2011

Because I want it

All three of our home computers are Macs, and we also have an iPad and an itouch. We (o.k. "I") love our electronics. And I will not lie, when something new comes out, I kinda want it, and usually "want" somehow becomes close to "need" in my head.

I've been with the same cell phone carrier for 10 years now, with the same phone number then entire time. Dean lets me deal with cell phone stuff, and he too has had the same phone number for many years. I really do like Sprint, and have never had a problem with them. Where we live, Sprint has the best coverage, and the unlimited data package is great for both Dean and I.  I have no desire to change carriers.

Except for one teeny tiny little detail.

I want an iPhone. I like my HTC Evo well enough, but I really want an iPhone, since it has all those apps that I want! You know, so it fits in with all the rest of our stuff here. A few days ago I was comparing prices for family plans if I were to switch to AT&T or Verizon, and I wasn't really very pleased with what I found. For the amount of data we use every month, Sprint's plan is the most cost effective. But there is that iPhone thing....

Imagine my glee when, while searching cell phone plans, I discovered a rumor that Sprint was going to start offering the iPhone 5 with unlimited data to current customers, and regular data plans for new customers, with pre-sales that would start sometime this week. Since today was Apple's release date of the iPhone 5, I dug all over the net to find out if this was true about Sprint. Apparently it is. I called my local store, and learned that they will be offering pre-sales of the iPhone5, and my name was added to the list of those offered early notification of those pre-sales. So that's like pre-pre-sale sales....I think.

Sunday, October 02, 2011

DSAM

How cool is it that in my life, I have TWO reasons for the acronym DSAM?

First of all, it's Down Syndrome Awareness Month. A little over 15 years ago Angela was born, and with her came the learning of a whole new language, the meeting of some of the most amazing people on this earth, and a realization that I was forever changed.

Then  a little over a year ago, Dean and I decided that one was not enough. We needed more greatness in our lives, so we added Axel. If you've been reading here for any length of time, you know that Axel just added more "interesting" to our lives. First, he allowed us to make friends...who I've actually met...on the other side of the word. These were not just casual meetings of people we will never see again. Instead these are life-long connections that will bring us back to Serbia again and again. And since Angela's list of medical providers was starting to run low, we got to add a whole new set of medical specialists! Also, because of our adoption, we've met more people here in the U.S. who we would not have otherwise met. We've gotten to watch as amazing stories of love and determination unfold and witness true miracles!

The other meaning of the acronym DSAM is the Down Syndrome Association of Minnesota. Years ago, when Angela was just a baby, I sat on the board of the DSAM. The organization has grown exponentially since then. I was there for the planning of the very first buddy walk, which I think had somewhere around 1200 people. Last weekend the Step Up for Down Syndrome walk, the DSAM estimated 7,000 people in attendance, making it one of the biggest walks in the nation! The DSAM has some pretty great programs in place to assist families who have a loved one with DS, from brand new parents, to grandparents, self advocate programs for individuals with DS themselves, plus many opportunities throughout the year to get together and celebrate the reason we know each other.

So, with this special month before us, I'm going to try to blog more! I'm NOT going to attempt the 31 for 21 challenge this year. Last year I failed miserably and this year, even without being in the middle of an adoption, we're even more busy. And now, off to load pictures from homecoming to my blog!