School

Well this week was another first for Maria starting school!  She has never really gone to school before.  She had great tutors at the orphanage and sometimes would be included at the local school for special programs, but was never there for the day to day school experience.  I knew that Maria would have specific needs at school and some challenges.  Not only is she considered ELL (English Language Learner) she also has her mobility issues.  Working with schools I know they deal with surprises all the time, but would rather know about issues and have a plan in place ready to go.  When I decided last spring to open enroll Maria in the school district in the town I work in I quickly emailed the principal (who is amazing) to tell her a little about Maria.  So, the school and my co-workers knew that Maria would be coming.  When I took Maria to register for school at the beginning of the month I got to talk with the school guidance counselors (who are also amazing) about Maria and they got to meet her.  They quickly emailed the principals and others at the school who would need to meet with me to plan for Maria's school day.  I also got some of my co-workers to come to the meeting since there is a good chance Maria will need an IEP (Individualized Education Plan) for her physical needs. 

We met last Friday....I have been at hundreds of IEP and similar meetings as a professional, it was different being on the other side of things this time.  I wasn't completely comfortable discussing all of Maria's medical conditions and needs with a group of people that I knew on different levels, even though I know and respect them.  The meet was great and here is what I asked for:  I knew with Maria's mobility that her carrying books in her backpack would not be possible so I requested and was given an extra set of books to have at home.  I also requested that she be allowed more time in passing between her classroom and other locations (even though she is in 5th grade she is at the Middle School, they do try to keep the changing classes to a minimum for 5th graders).  I also asked that she have an appropriate place to use the bathroom where she could change her pullup in privacy and have the supplies needed at hand.  I also requested that the adults in the building promote Maria's independence.  We also are going to have her ride the bus some to the babysitter's house.  Thus far everything has been done.  In fact they have gone above and beyond what I expected!  They have made sure someone is with her while navigating the school right now, the teacher had the extra books ready for me at the open house on Monday night and the special ed teacher who also co-teaches in the room has called me each day to let me know how things have gone!

So, I know you are excited to hear how Maria is doing....well Monday she was very excited to go to the open house.  She did ok with her locker combination, it will just take some work.  She got all her things put in her desk and even met one of the other girls who sits in her pod at school.  Tuesday she got to spend the day with my parents while I was at work....she did well while she was with them, but was rather tearful that night with me.  I could just tell she was anxious about the next day.  Wednesday was the BIG 1st day of school.  I took her to school and walked her up to her class.  I know not normal for her age, but her situation is unique.  I was told she did well at school and even had a few girls walk around with her at recess.  She seemed to be very happy about school, even though we had a 4 page interest inventory to do as homework...yeah, try doing that with a kiddo with limited English, but we did our best.  Today I only had walk Maria into the building.  We quickly saw the principal who came over and offered to walk Maria up to her class (she get to go up early since it takes her longer to go up and down stairs).  I got a call at the end of the school day saying that Maria had another good day, but that while they were doing the bus evacuation they discovered that she had worn out the tip of her crutch!  Can't say I'm too surprised.  It was a frustration for her, but the teachers got her to tell them crutch when she was having an issue with it, so they could try to fix it.  (yes, the first thing we did after I got done with work was go get new tips)  She also kicked a ball around with another girl at recess....so happy that she figured out that she can kick a ball and that she is making friends!  Well, there was some miscommunication about how she was leaving school today....I ended up having to run to the school to get her.  She did get frustrated with her crutch and just let go of all the tears.  Because of everything I did take her to my office while I finished up work....not something I would normally do, but I also realize that all these changes are really hard for her and she has done a great job of dealing with them.  She hung out at an extra desk while I finished up a few things and got to see some of my co-workers too (my co-workers just love her to pieces too).  After getting home she had a small cry over a little non-issue and then a big cry over her bedtime.  She goes upstairs at 8 to shower and get ready for bed and is in bed before 9.  She wanted to go up at 8:30...not an issue on weekends, but with her having to wake up so early to be ready on time and the fact that she doesn't want to get up...it wasn't going to happen.  Well, due to all the changes, all the stress, etc I made her get ready for bed right then and there....yup I'm a mean mom.  She cried the entire time she was going upstairs, the entire time she was preparing for her shower and all during her shower.  Yup, she was tired, frustrated and highly emotional. I didn't make her go right to bed.  I knew she needed to have some down time with me and no other distractions....we read part of a book and just had some cuddle time while listening to some soft music.  She went to bed in a happier mood and with little to no complaining.  I have a feeling we might need more of those nights in the future. 

As you can see Maria has a friend who wants to eat breakfast with her in the mornings.

At the 5th graders open house

Maria showing off her desk

My co-worker Ernie and his wife got Maria a U of I t-shirt...so funny b/c I am not into sports at all.

First day of school....ready to go into the building!

In her class, ready to learn and meet new friends!

Adaptive sports clinic

Today we went to the adaptive sports clinic.  It was great for Maria to get to try new things.  Here are a few pictures from today.

Ready to try a hand cycle

Getting some help.  From what I have heard hand cycles are very hard to do because of all the muscles that you have to use.

She loved it and wanted to know when she was getting a bike.

Taking a short break

One of the local university's PT students were volunteers there today to help out with safe transfers.

Visual demo of how to kayak!

Figuring it out with some help

Working her paddle

Done with paddling...time to sit back and relax!

Sports wheelchairs!  The guy in the white t-shirt has his own adaptive motorcoss bike.  He shared that he was injured doing motorcoss, but wasn't ready to give it up yet.  The guys were great at showing Maria the ropes.

These are awesome chairs...there is the back wheel and a bar that prevents the person from tipping over in the chair...they can also spin in the chairs!

Maria trying to make a basket...she didn't, but then she also called this wheelchair volleyball...so much to learn.

 

hand cycle
hand cycle 2
kayak
kayak 2
A few videos for you to enjoy too!

Back to work adjustment

I have survived my first week back to work and away from Maria.  I'll be honest, it was hard at times.  I worried about her adjusting to the new changes.  So, I know you are wondering how it went.....well there were tears on Monday and Tuesday....Wednesday there was much irritability and some attention seeking, but no tears.  Thursday started out rough...Maria thought it would be ok to take 45 minutes to just get dressed!!!  Yeah, that isn't going to work when school starts.  I let her know that she has two options to either be woken up earlier (which neither of us would enjoy) or get ready faster in the morning (with no little to no complaining).  Maria said she would rather get ready faster (big surprise).  Today she was able to get dressed (braces, shoes and hair done) in 15-20 minutes.  In fact we had about 15 minutes to spare before my dad came to stay with Maria for part of the day...he then brought her to the town I work in around lunch time.  All my co-workers have been very anxious to meet Maria.  She was given tons of attention and some treats.  Everyone continues to be so surprised how well Maria is doing.

Also had the amazing Occupational Therapist (OT) who works in my office do some screening on Maria.  At times some of her fine motor skills aren't quite where most 11 year olds are.  Examples...difficulty with tying her shoes at times, tightening her shoe laces, buttoning her jean shorts, cutting with a knife, etc.  The real question is how much is a lack of ability and how much is a lack of exposure to doing these things.  The OT right now really has no concerns at all with her fine motor skills, but she has said she will give suggestions as needed.  She is also going to work with me on using a brushing program with Maria to help with some of her over stimulation to touch (she is extremely ticklish).  We then headed over to Maria's school to meet with the staff and teachers to make them aware of her needs.  It was a little odd being on the other side of the table, but I had some of my amazing co-workers there backing me up and a group of amazing educators and administrators in this building who will do their best.  The school nurse asked great questions regarding Maria's medical condition and needs.  Everyone was open to doing what is best to ensure Maria's safety and inclusion with her peers.  Best part, they got to see what an amazing little girl I have and no one pushed for her to need an associate or para with her.  They are going to use peers to help at times when it is needed and even some older 8th graders (which I think is good for Maria and the older kids).  Next week we have the open house and Maria's school (where I have to get some pictures for everyone back at the orphanage to see) and then the first day of school is Wednesday. 

Many times people hear Maria has Spina Bifida and they think the worst case possible....once they meet her and see her determination and intelligence, they are just awestruck by my little fighter.  This wasn't the plan or way I saw my life when I started this journey....it is better than I could have ever imagined.  I still can't believe that she wasn't adopted long before I came along.  I realize that special needs adoptions are not for everyone, but I'm so very glad I listened to God and took the step to say yes to Maria.

Summer break is over for me.  I go back to work tomorrow and I'm not ready!  I feel like I haven't had enough time with Maria...granted I have been with her almost every minute since picking her on on June 25th....still doesn't feel like enough time.  My mom keeps telling me how this is my summer with Maria, that once she goes to school she will want to be with friends and activities during the summer.  I'm sure she is right, but secretly hoping that it's not completely true.  Anyway, Maria doesn't start school until the 22nd....so she gets to hang out with my mom while I'm at work.  I'm wondering if this will mean she will start talking more with my mom.  Right now she is very quiet around other people.  Will say a few things, but not a lot.  As soon as it is just the two of us, she just lets it all out!

Maria continues to make good strides with her physical abilities.  She is walking faster than when I picked her up from the orphanage.  She is doing lots of things independently now that she didn't do when we first came home.  She is able to do all her bathrooming and showering on her own.  Which I was quite surprised by her doing the other night.  She and I did some talking a few days ago about not having to wait for me to get her out of bed in the morning....now she is getting out of bed on her own and talking her personal items to the bathroom to get ready in the morning.  I'm so proud of all that she is doing, but also a little sad she doesn't need my help at times.  Yes, I know she needs to do these things for herself to continue to gain the independence she needs in life. 

We also got to Skype today with a friend of hers from the orphanage that was adopted about a year and a half ago.  It was good for these two kids to get to see each other.  I have a feeling we will be traveling out to Ohio or Indiana at some point this year to meet up with the other family so the girls can spend some time together.  If Alexis had her way I would be driving 10 hours one way next weekend!

Working on doing a donation give away for Z....will have more details soon.

Stairs

Maria's PT is working with her on gaining more independence of our home.  One way that we are doing this is by Maria carrying both her crutches up or down stairs herself.  Up until our last PT appointment she would hand me one of her crutches to carry down or up for her.  Now she doesn't need me to help with this.  Although, I'm still there to give her some support and assist if she had difficulty.  So proud of her and what she is willing to try.  By the way ignore the dirty stairs....high traffic area that always needs to be vacuumed!

He's up

For those who have been following about Maria's friend Z, he is officially up on the photo listing here.  Now, before I get flamed about photo listings....I get the issues with them, both good and bad.  I know that this is most likely the ONLY way that Z will find his forever family.  So, please check out the link, share it with friends, family, on your blogs, FB, etc...let's get the word out and try to find him a family! 

Also, I'm working on a couple fundraiser ideas.  A co-worker/friend has offered to have a Scentsy fundraiser for Z...will be finding out more info to pass on to anyone interested.  Thinking of doing some kind of give away to help raise money for him.  If you are interested in donating something let me know.

Suggestions PLEASE!

Ok, so I have found out that the NGO I have been communicating with had gotten Z's file.  Great news for Z!!!!  So, now for the hard part....finding Z a family.  He will be featured on a certain photo listing website for SN kids (more to come on that).  Some other adoptive families and I would like to do some fund raising to help the family that chooses to adopt Z (see I have no doubt that someone will want to adopt him).  I'm horrible at these fund raising things....I need help and I need ideas.  Please give me suggestions :)

Beginning to grieve

This has been a fairly quiet week over all...no big appointments were scheduled or events happening until Friday.  Well, this is what was really needed for some of the homesickness to come to the surface.  Nothing really big happened.  I realized quickly what was happening.  On Monday Maria seemed more quick to whine or cry about things.  Not out of the norm for her to whine....crying usually happens when she is very frustrated, if she thinks she is in trouble or if I tell her something she doesn't want to hear or a little more harsh than normal (hey, it happens).  I was able to talk with her about what was going on a little bit and she said she was sad...missing the doma.  Ok, 100% understandable and completely ok.  We ended up planning a quiet evening....when she made sure to test me on the major things that I have been trying to get her to stop.  I realized quickly what was going on and made some quick decisions.  First, there would be no iPad/laptop while Maria was up.  I needed to regain control and this was one way to do so.  I also knew that I needed to stick to our routine....Monday I altered from our dinner time routine b/c I was on the phone with my friend.  I also decided to take a different approach to the behaviors I want stopped.  So, that night I removed the iPad to my room, the whole out of site out of mind.  I did message Manuela that things were a little rocky and we would not be doing Skype for a while, which she totally understood.  Tuesday I let Maria decided how long she wanted to stay in bed.  She could get into her wheelchair at any point and everything was ready for her to take her shower...she waited a long time until I finally came in and asked her if she was ready and started to leave when she gave me no answer.  We ended up spending a good chunk of the day making 26 cards for people back at the doma.  I encouraged her to write little messages in them while I did some cleaning.  Well, that is when the major crying started....she had worked on one message and just couldn't do more.  Not sure why....I stayed with her while she was crying.  I have found that if I try to comfort her, the crying fits will be worse.  So, I was there if she needed me, but not giving her much attention.  Eventually she quieted down enough to let me know that she was missing the doma.  We put the cards away and I did hold her for a while.  She started doing her testing again and I applied my new way of dealing with these behaviors....I do not say anything, do not give her any attention and deliberately look away from her.  She really didn't know what to think about this....at first she tried the behavior again...still no reaction from me.  Then she said "no (specific behavior)" and turned my cheek towards her to give me a kiss.  She is such an adult pleaser that this technique of planned ignoring and not responding is working for us.  Guess what...since Tuesday the undesired behaviors have rarely occurred!  We also got a call on Tuesday that her new shoes were done!  Wednesday we went and got the new shoes...had to put them on right then.  The Orthotic place was great...they did the lifts for the shoes for free...I was expecting it to be about $50 per pair of shoes.  It was great on the way home Maria would bend down and touch her new shoes saying "Maria's shoes".  She loves them and wanted to show them off to grandma and grandpa right away.  Things have also gone well today.  I am continuing to react to specific behaviors through planned ignoring and I'm trying hard to be supportive as possible regarding the grieving that she is going through.  There will be many hard days ahead...what we have been through so far has been minor compared to what it could be.  Still her crying fits are tiring for both of us.....thankfully I have had lots of experience with these and other kinds of fits from kids through my job, so I haven't gotten too frazzled from them yet (hoping it stays that way).