School....

Tomorrow we embark on an exciting journey! Really just an extension of what we already do with some record keeping and lots of research thrown in. Tomorrow it the first day that we can begin home school for the year! I have to say, I am truly excited. I have been researching and reading for about three years now trying to prepare myself as much as possible and now here we are! After all that reading and a lot of good suggestions and some examples given by families here on the web and friends I have met...I think we are leaning into the Delight Driven or Ecletic Style of schooling, at least for the next couple of years. My new friend who home schools her s.n. son showed me a lot of what she did with him the first few years when the major focus was still on life skills, functional abilities and self help. The first years they did lots of field trips to community service places like the post office, police dept, fire dept etc. She also did a different approach to help him learn to read...she began with sight words showing him lots of words by labeling everything (in their home, on pictures, in therapy) she used post its on everything! And you know, her son can read really well! So, I am stealing that one, too, since Faith doesn't even understand ABC's yet, I figured at least she could begin to learn to recognize simple words, eh? She also picked from anything that he was interested in and focused on finding things related and made them into math projects or simple science experiments. So I have been collecting LOTS of horse related items...my favorite find, Monday's trip to the Goodwill, a 360 page illustrated horse encyclopedia, in perfect condition for..... $.49! Near where we live there is a store called the Education Shack that has all kinds of random educational supplies and therapeutic equipment on the SUPER CHEAP! And you all KNOW how I love a good deal! So Saturday, we ventured out, here are some of my great deals...pretty proud of these finds, especially the last one!

One cartridge of my kind of printer ink in magenta...(I just saw this at Staples for $20) my price
$1.00! And it's not expired!~

Record book with attendance and other needed items, I plan to disassemble this and use different pieces of it ( saw a newer version of this at the education store, around $10.00) my price $1.00!

Thought about you, Katy, with this one! A dirt worm cup dessert kit (made with pudding and gummies) my price $3.00! This one is going into my first science set, exploring plants, that goes hand in hand with my next find of the millennium!

Found this science curriculum kit for K-2cd grade, with hands on materials like seeds and cups for growing, teacher resource book, flip chart with diagrams an d charts of plants and animals in pretty simple terms, beans to soak in water, journals, soil and the like. I know Faith isn't ready for a lot of this stuff but she would like to plant some flowers in some dirt! So I spotted this kit in the window and asked about it. It was the only one, no price on it and the box was a little sun worn from sitting in the window. I asked the girl how much and she says..."how much do you want to pay for it?" Hmmmm...I was gonna go for a cheap toss out of $15 but since she asked...."How about $8?" SOLD! Yes folks, I snagged this $75 science kit for eight dollars! I checked it out on Amazon just out of curiosity! I walked out of the store with two walmart bags and this kit for $20! Got tape dispensers, highlighters, huge flip books, ink, planners, paint, misc. office supplies, pudding kit...all for a measly $20!
My home school planner is pretty much all set up and ready to go, and we can officially begin on June 1st. My plan is to try to get a jump by starting early so we can be sure to get our 180 days in. I found out that we can count a lot of Faith's activities toward our days, so I am happy about that. Of course, a lot of our work is going to continue to be on life skills but I want to get her out into her community more. So I plan to start out next week at the library and get her own library card. Big step, huh? I called the library the other day to ask how old a child had to be to get one (stupid question, BTW) and was informed that we could get one for a newborn, that kid's just link back to a parent's card! But another important milestone, none the less!
So here we are on the cusp of a huge new experience for Faith and for me. As of tomorrow, our little girl is in first grade! WOW....
Freaky!
HERE WE GO....

Graduation.....

Sunday, was Faith's Girl Scout graduation. She was bridging from Daisies to Brownies, even though she still should have been a Daisy, so she could stay up with her friends. We had seven girls in our troop, who were bridging, four Daisies and three Brownies.

Faith's little friend was so kind to push her up to the front and help her when she got her certificate and bridge bar.

These are our daisies, aren't they so cute?

This was my favorite pictures. Just love seeing her little face!

Faith gets a flower from her troop leader.


They were supposed to walk over the bridge so her friend just improvised

Then she got her bridge bar and a pin on a little ribbon.


Faith's bridging certificate...

Faith was more fascinated with the ribbon than anything else that she got. She understood that it went over your head, so she decided that she should put in on Daddy's head!



Here is her little uniform and all the patches she earned, this year! Pretty impressive, huh? The patches on the left are going on her Brownie uniform, as they have been working on these just recently. She already has NINE for it!

We were so proud of her! I would never have thought that she would have done all those things and participated in so much stuff! It's pretty amazing but really it's just physical proof of LOTS OF FUN! So our little Daisy is now a Brownie!

Congrats, Faithy, we love you!

Daddy and me...

Daddy and me, sleeping on the couch...

Can you see where I get my good looks from?

Those same luscious lips...

Those same thick eyebrows...

That same hair color
(well, when daddy had more hair you could tell it better!)

Those same...LASHES!

Nothing better than a little nap with my dad.

Six years ago....

This month marks six years since Faith was diagnosed with Cerebral Palsy. She was just barely five months old. Even though we knew what happened to her since the beginning, we were not told what it meant for her when we left the NICU. When we came home, she was on Tegretol but they didn't say "Faith has epilepsy" even though she had lots of seizures while she was there. When we went to the neurologist that day, Faith had recently had an EEG and an MRI and we didn't even know what we should be expecting. To be honest, we were thinking everything was going good. She had rolled over just recently and we thought that she looked fine, to our untrained/ignorant eyes. That day, we sat in the office waiting for the doctor, we were laughing and playing with her, not worrying about anything. The doctor came in with her scans and pictures of Faith's brain and held them up and told us that Faith had something called Cerebral Palsy, that she had been afraid that she did but had waited to tell us until Faith was showing signs of problems. She said that Faith had persistent primitive reflexes and was showing signs of delays. We didn't even know what CP was, we thought it was something like D.S.. We just sat there in shock, as she described what she saw for Faith's future....diapers for the rest of her life, no walking, no talking, the word "vegetable" was thrown out and even suggestions were made that she might need institutional care. This doctor will remain engraved in my brain for the rest of my life, not just because of the dx, but because she was so cold and factual. She just blurted these things out and gave us no recourse or anything to do. We left that office not understanding anything. We still didn't know what CP was. I remember I was crying uncontrollably and Carl was too. Faith was in my arms looking at me like "What's wrong?" I can still see her little face. We had been given a pamphlet for Family Connections to contact and we were referred to Baby Net but we had to drive nearly two hours home, knowing nothing about CP. I get physically ill when I remember that day....the worst was laid out for us and our tiny daughter. I had to go home and make all these phone calls to people and doctor's offices and tell them about something I knew nothing about.

I remember the first call to a friend I made, my friend Kim, the lady who got Faith to nurse after 9 weeks of work. She prayed this beautiful prayer on the phone while I bawled my eyes out and then told me she was coming to my house the next day to talk. She knew about CP and had worked with kids like Faith in her work as a Breastfeeding Consultant. She was positive and encouraged me telling me that Faith had learned to nurse so what they forecasted might not be entirely true! She kept telling me that Faith was a miracle and God had a wonderful purpose for Faith! Boy did I need that!
Some of the things the doctor warned us about have happened, some have not, some new things have shown up but they don't make Faith who she is. They are part of her, they give people pause to look at miracles but they don't make her a good girl or a happy girl. That's GOD given! When I remember that day, it seamed like nothing could be worse, nothing could ever be better. But slowly it did get better. Her dynamic personality covers up everything that is so painful. I know now that all three of us have what it takes to live with this situation. I have grit and determination, Carl has love and compassion and Faith has slow, steady resolve as well as a happy spirit and a light heart.

Decisions...

Well, I thought my entire week would be carefree and lazy, last week. It didn't quite end like that but HEY, a few days is better than NO days, right? I have been doing lots and lots of end research preparing for our first year of homeschooling so I haven't had much time to lay down a post in several days. In S.C., we have three options to h.s.: 1)School district approved prgm oversight by school district 2) Use an option two h.s. association approved by the state that requires testing of kids, very involved curriculum approval process' and VERY expensive membership dues 3) Option three....the only option that makes any sense if you are going to all this trouble...Join an Opt. 3 H.S. association, with no less than fifty members and follow their group rules, which are required by the state.

1. Keep a plan book or diary
2. Keep attendance, must be at least 180 days
3. Do a bi annual review/progress report
4. Attend a twice yearly check off where other group members review your records
5. Include reading, writing, math and science

This is a very brief explanation but of course, we chose to go with an option three group. We had three groups we were looking at. Two state wide groups and one local group, here in our county. Saturday we went to a check off meeting to meet the group in our county. They were all very nice and VERY helpful. The leader gave me lots of great ideas to work with Faith and another parent there showed me her plan books and how she prepared them. Great stuff! They were very accepting of Faith and told me that they had several special needs families in their group. They gave me tons of good field trip ideas for her for this year and made great suggestions of what I should work on with her. (Let me say, I know a LOT of this stuff in theory but how to do it and follow state law and requirements for the group was a little different story) They also gave me a phone number for a wonderful mom whose son has cerebral palsy and told me that she would be happy to talk to me. So I feel a LOT more confident and at peace with our decisions and very happy that we have a local group, to get advice and help in our first year and some families with kids like Faith. VERY RELIEVED! I started work on my plan book and after setting it up...I have 16 categories! I might need to pare this down a little...LOL!

BTW: I did call that mom and yesterday, we got together. She was so nice and her son was the most like Faith of any kid I ever met, even though he is much older than her. He still gets around his house walking on his knees or crawling like Faith does! You should have seen her face, watching another kid do that! She was right on his heels! He was incredibly smart and could tell me anything about the space program that I could ever imagine! They even gave Faith this cool piece of equipment called a wagon walker by Kaye products. It's this little push cart style walker for bigger kids and it has a wooden basket for toys on the front. You never saw a kid so happy! She has been pushing that thing around ever since! They had it waiting at the front door for her when we arrived! SO NICE! She showed me lots of stuff she did with her son when he was little and gave me a lot of confidence. We spent about 4 hours together and were instantly friends. She told me to call her anytime.

So all in all, our decisions are pretty much all made, I feel SO much better and we even made some new friends!

Horse stickers courtesy of Faith, she helped by choosing stickers and placement...

Therapy and friends....

Faith's physical therapist is wonderful. She loves Faith so much and has bent over backwards to keep seeing her over the last year. In the fall she moved over to the main hospital to work fewer hours and she quit working at our therapy center. But she offered to continue to see Faith during her lunch hour on Wednesdays. So NICE! After Faith was out during her surgery, she came back to pool therapy, just doing Mondays to help out the center. So we had her two days instead of one! Then a few weeks ago she called me one night and tells me she is leaving all together. No more pool therapy, she was cutting back her hours to just work three days a week. I should mention that her oldest son was dxed on the autism spectrum this winter, at ten. So I know she has been under a lot of extra work, stress and changes. But again she offered to continue to see Faith on Wednesdays. I certainly did not want to lose her but I didn't want her to say she would just so that I wouldn't be upset. We talked for a long time and she said that she didn't realize how much she meant to our family. She said that she loved Faith so much and wanted to be part of her life. She also said that she often thinks of us on the weekends and wonders what we are doing and mentioned that she would like to spend some time with us outside therapy.
She is so sweet and I like her as a person too, not just a therapist. She is very down to Earth and tenderhearted and I really look foward to seeing her each week. We talk about our kids and she confides in me about all the stuff with her son. I have often thought that I would like to ask her to come have dinner with us one weekend but have never gotten up the courage to do it. I worry that it might cross some professional line for her and be weird or awkward if I asked. She did mention how she would like to come visit us in the country. So I have been re-thinking asking her and her family to come over. Today, I got a text message from her checking on me (she didn't know about our crazy trip in NC, yet) to see if I was hanging in with my mother. I thought that was so sweet and I feel like she is reaching out to us.I know that friendships can cloud professional relationships and I am understanding of those issues. So my question to all of you is...Is that crossing some line? Or should I should ask her?
I certainly don't want to make things weird for her or us but I feel like she is making an overture. Carl says we should invite their whole family one Saturday night for dinner and a movie or some board games.
( I know we are dorks, right?)