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Record book with attendance and other needed items, I plan to disassemble this and use different pieces of it ( saw a newer version of this at the education store, around $10.00) my price $1.00!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

So this is how it is supposed to be....

So, after my harrowing trip to N.C. I have been hiding...yes...hiding out at the house.

In three days the phone has rung twice! Once it was our S. therapist who forgot we were supposed to be out of town, trying to nail down summer schedules. And the other one was a homeschooling group leader from our county, returning my phone call. So I call that a pretty successful three days. I think in the last six years we may have had a few weeks total like this but it's been a REALLY long time since we have, maybe over a year and change.

I never can imagine what regular stay at home moms do. I have thought of how their days must go but I don't really know....and I still don't. But I can imagine that this is as close as I am gonna come. Monday and Tuesday, I didn't even get out of my pj's until after 4pm, when I decided I should put some clothes on and take a shower before Carl showed up at home! I have gotten a bunch of cleaning jobs done that were way past due. Got the playroom cleaned up and organized and our bathroom almost done. I kind of don't know what to do with myself. I feel like I should be going somewhere or doing something "important". Faith and I have spent lots of time snuggling, picking up toys, being....
LAZY. He He He....
I thought to myself how much I could do if I wasn't doing other things like driving all over God's green Earth. But then I thought about how important those trips are and how much it means to Faith. So I guess I will settle with a less than clean house, a messy playroom (with cobwebs in the ceiling corners) and well.....
Maybe a "stay"cation from all our appointments once in a while.....
(I am thinking of telling everyone I am going to Bermuda for a whole month, just so I can get prepared for homeschooling, this fall)

What $8.00 will get you....

A little late spring fun....

Faith's cousins came over for dinner, Sunday night. I made a little Mediterranean for dinner and stopped by the dollar store for a kiddie pool.

Faith had so much fun. She could have spent all night in that silly little $8 pool!

Her cousins had fun too but they both are a little high strung and can't really behave. So they were extricated from the pool after about half a hour!
We have been working on getting grass to grow for over three years in our back yard and no matter what we did it wouldn't grow. But this year, we finally got it started. So I spend every night watering the daylights out of it. But Faith gets so bored and frustrated.
I think this is my new weapon to keep her happy while I do a little yard work. I can just put a few inches of water in there and she can't get out but she is happy!

Tonight, we let her get in for a while after dinner. She kept pouring the water out of the pool with her little watering can. She thought it was hilarious to try to pour it on our feet and on the dog and on the cat! By the time she got out, Carl and I were mostly soaked.

We are recovering from our trip by
doing absolutely NOTHING this week!
I am taking every one's advice from a few weeks ago.
We haven't left the house since Sunday afternoon.
We have NO appointments and NO ONE knows we are back in town, so no phone calls either. I am going to try to lay low for as long as possible.

What'd I tell ya?

OK, I admit I may have inadvertently jinxed myself in my passing comments about living to regret my trip to my mother's. I left early Thursday morning, made good time and arrived before lunch. Went to see my mom, in the hospital...she looked good. She had some swelling but she was walking with a walker and just had a single bandage strip that ran the length of her knee. She was really tired so we didn't stay long. I met my high school best friend for lunch then headed to my mom's house.

The next series of events resembled a scene out of Lemony Snickett's Series of Misfortunate Events! I won't go into great detail but upon arrival and unpacking my entire car we were forced to leave in great haste. I had to throw everything into my car including poor Faith. I finally got everything in the car and went to pull away from the house....when.....smash! I hear this awful noise and a terrible grinding. What had I done? Well, friends, I had hit an old metal rod that was driven into the ground! I hit it with the front passenger's fender and it scraped down the side until it went behind the wheelbase and under the car....where my car got hung!

Unbelievable! I almost ripped the fender off the car and made a huge gash down the side.
My mom's neighbor had to come over and jack my car up and get the post out of the bottom of my car! It was a miracle it didn't pierce the oil pan or transmission, he said!
I was a total wreck! I sat in a local gas station parking lot and cried for a good half hour! I didn't know what to do...I couldn't go back to mom's house and it was too late to try to get back to Raleigh or try to head home. So I swallowed my fear and got a hotel room. I decided that night I was going back home. I sat for what seemed like hours trying to think what to tell my mom. Finally, I just called and said "I am going home, tomorrow" and left it with no room for negotiation. She wanted me to stay. I felt like a terrible daughter. I know she will hold this over my head for....forever. But the living arrangements were unacceptable and I could not have Faith there for a week! It wasn't safe for her. I have been fighting off big time guilt and avoiding my mom's telephone calls. (I know...terrible..)
I don't talk too much about all my family here but most people on my side of the family have had trouble with boundaries. They often ask a lot of me even though they know about Faith. They don't seem to understand the limitations that are brought on by caring for her. I, in turn, have a hard time saying no when I should. I try really hard to be a responsible daughter and do the right thing, the things that children should do for their parents and family but I often end up getting my hiney handed to me. I over do it or can't live up to their expectations because I have to care for and protect Faith and my family just can't understand that.
I think I bring it on myself, sometimes, because I should just draw a line in the sand and say
"No crossing this line!" period! But I let people cross that line and it's hard to put them back.

So here I sit...not helping my mom, not being the "good daughter", not doing what I said I would do. But my responsibilities are really to my family and to my daughter, they have to come first. Even if I am torn, even if my family can't understand, right?

And just to add insult to injury...on our trip home, a trip that should have taken about 5 or 5 1/2 hrs took me almost seven! We got stuck in two serious traffic jams and I took a wrong turn off and added about 45 min. to my trip! I felt like the kid on Charlie Brown with the big cloud over his head!

Props....

In Faith's therapeutic riding lessons, her instructor uses all kinds of random props...

clothes pins on the horse's mane to encourage Faith's fine(r) motor skills.

Egg and spoon game... to work on Faith's ability to follow instructions and delayed gratification and counting.
This game is now her favorite one. I don't know where they found that spoon and egg but I want one! She is supposed to hold the spoon with the egg in it for 3 seconds (which she rarely does) but they hold her hand and count to three then let go. She will fling the egg back over her head and laugh like a maniac!

Sometimes she gets it done by herself!

I really think she could play this game all day! The funny thing is I would have NEVER picked this as something Faith would want to do! NEVER! But something about Miss Caroline and the horse and all makes it the most fun game ever!

They also use pinwheels, balls, pool diving rings and fake flowers to encourage different movements from her.

Faith has made so much progress in the 9 weeks since she started riding that I encourage every parent who reads this to get their kids on a horse! It will be some of the best medicine you can find, I promise! Good for your kiddos and really good for you!
She can now almost completely turn around on the horse with just support when she is turning. She can get her leg over the horse's neck and back end with no help at all!
She is beginning to use the reigns, a little. She can ride front or backwards with no hands and stay on by herself (with people on each side for protection, of course). She can transfer rings across mid line to hang them on a pole. She can follow several new instructions like put something in a bag or kick a ring off her foot.
All of these things are new since she has been riding. We have tried lots of different therapies and different things to get results for her in her life but the horse riding has been the quickest and best results we have seen. I have been able to tell a big difference in the tightness of her interior thigh muscles. This was something that was quite bad before we started. I was having a lot of difficulty changing diapers or dressing her in pants because she was so tight. But she is much more relaxed and actually will lay her legs out for me to do those things now.
We are now on lesson 3 of our 6 lesson scholarship. I don't know what we will do when she uses up her lessons. It will be running into summer and I don't know if we should take a break during the hot summer or if we should try to make it work for a while longer. It gets so hot here and she is so sensitive to the sun that I worry about her. I certainly don't want to give up what we have worked so hard for and have regression so maybe we can make something work. I think we may be able to reapply for another scholarship if she has good progress, which she has.
Hmmmm, decisions.....
We are off today for lesson 9 this morning. The weather man is calling for showers so I hope that we beat them and can get her full hour in before the bottom falls out!

Happy Mother's Day....

Happy Mother's Day to all my bloggie friends out there....

Each and every one of you are rock stars!

In honor of Mother's day, I thought I would tell you all about Mother's Day 2003.

I was 25 years old. Carl and I had spent the day in Asheville NC, visiting some of our favorite haunts. We had plans to take my grandmother out for Mother's day that evening, so on our way home we stopped at a local roadside greenhouse and picked out this beautiful yellow rose bush for her. On the way home, I had slept the entire hour and a half until we stopped. When we stopped Carl commented about how tired I had been for a few weeks and how he had noticed that I seemed "bustier" than usual ; )!
Thanks, honey.

On the rest of the ride home his comments kept running thru my head. No...
couldn't be. No.
When we got to my grandmother's house I made up a dumb excuse that I needed to run to Walmart for a card. Once inside I made my way to the pharmacy dept and bought 6.....
TESTS...

I covered them up with some candy and a few other odds and ends and made my purchase.
Once back at my grandmother's I did the test.
POSITIVE.
NO....I drank about 3 glasses of water and did another....
POSITIVE.
We went to dinner, I said nothing but drank about a pitcher of water and made up another excuse about the bathroom and did another, right in the restaurant.
POSITIVE.
When we got home, another test.
POSITIVE.

By now, I was pretty sure something was up. So I packed up all my boxes and cried my eyes out for a while at the local park by my grandmother's house. Finally I decided I had to tell Carl but I was so afraid he would be upset.
We both always said we didn't want kids.
The only thing I could think to do was go down to the lake and sit on the dock.
The words would not come to me....
I sat for about half an hour before I finally opened my purse and dumped out all the boxes and tests on the dock.

Carl was speechless...
He picked up each one and looked at them all. Finally he said "does this mean we are having a baby?" I still couldn't speak, I just cried. He jumped up and started hugging me and crying too! He was so happy!
That night I took another test...
You know...just to be sure. And the next morning, I left work before the store opened and had another test at the doctor's office.
POSITIVE.
The nurse laughed her head off at me, when she heard I had taken over 6 tests!

So this is how we found out about FAITH.
On Mother's Day...
This rose bush was planted at my grandmother's house, that night. A night that we will never forget. When my grandmother died, 7 weeks before Faith was born, I went and dug it up and moved it to our house. Then when we built our new house, it made the move with me, again. Every year, it blooms within a day or two of mother's day and this year is no exception. I found this beautiful bloom, yesterday night!
Every year, it is a symbolic reminder of my first mother's day. And a reminder of how life can flourish even when things change.
BEAUTIFUL!

HAPPY MOTHER'S DAY, EVERY ONE!

Knees...

Next week on Tuesday, my mother will be having total knee replacement surgery.

She suffered a traumatic horse riding accident when she was 16 that did severe damage to her left knee and required major surgery. That was nearly 40 years ago. Her knee has grown weaker and become more painful during the last few years and has gotten to the point of no return. Her surgeon said her knee was one of the worse knees he had ever seen. She got a dx of severe osteoarthritis, irreparable ACL damage and a few other things I can't remember.

My mother lives alone and has no family who can help take care of her so it falls to me.

Faith and I will be traveling to NC, next week, to help her recover. I am very anxious and not looking forward to this trip. First of all, it is a six hour drive....one I have only made twice by myself and never with Faith, alone. Second, my mother is going to need 24 hr care for at least a week following discharge. Third, she is going to be completely incapacitated for a period of time and requiring daily injections of blood thinners. Fourth, my mother is not easy to live with under the best of circumstances.

I feel responsible to go take care of her. I am the oldest child, the responsible one. The only person with care giving experience and medical training. I know she needs me.

But this is going to be.....difficult.

Dealing with her and keeping up with Faith, all by myself. I am very nervous. All kinds of terrible visions float through my head.

I know I have the capacity to do each, individually. But both at the same time....

I pray for strength, determination and patience.

I don't really know what that week will hold but I know it won't be easy. She asked me to stay for a week when I bring her home. I haven't said yes for sure but I am making plans to try to stay, if I can make it that long.

I sure pray that I have the mental fortitude to keep up with everything. One thing I am worried about is if I need to leave the house. I love having a pajama day as much as the next but a week without leaving the house? I don't know if I can take that. Not to mention that my mother lives very simply, she has only one tv with two channels...no living room furniture...no house phone...no extra beds. It's going to be interesting, people.

I have been trying to problem solve with some alternative options but none have presented themselves, yet.

I just hope I don't go crazy. If you hear a national story about a crazy 32 year old mother jumping off a NC high rise, you'll know who it was!

Can I please have an extra day in the week?

Ever since Faith came into the world, my time has been consumed by doctor's appointments, specialists, surgeries, research, therapies and driving thousands of miles.

Therapy takes up the largest amount of our time, as it does in most of your households. Unfortunately, we have a crazy long drive to each therapy.....like over an hour, one way. This week, we started Faith's AAC therapy to teach her to use her iPad. So here is a rundown of our new therapy schedule.

Monday: OT-10am-11am....30min drive

AAC therapy-12pm-12:45....another 50 minutes from previous therapy

Pool therapy-1:45pm-2:30.....15 min from previous therapy

Wednesday: PT-1:15pm.....1+ hour drive, one way

ST-2:00-2:45pm, same place

Friday: Therapeutic riding: 11am....45 mins away

This is just our therapy schedule, not including doctors or evals or Girl Scouts or Parent Fundraising responsibility for our therapy center or say....

cleaning my house, feeding my husband (and myself), feeding the dog or getting some sleep.

Oh and did I mention we are preparing to start homeschooling in a few months?

ARGGGGGG! I just need a few more hours or even an extra day to get all this stuff in!

I know I bring all of this stuff on myself (or Faith, as the case may be) but I feel like I should take advantage of everything they offer for her. You never know when the state's medicaid system is going to fall flat on it's face and all of us will lose all of our therapies! Really I am complaining about my driving time, I think. I spend most of my time in the car and it feels like that is precious time I could be doing 50,000 other things. I figured out we spend no less than 10 hours each week in the car...about 400-500 miles each week. The last two years I have put 70,000 miles on my car...and I wasn't going to the mall, people!

Crazy.

Anyone feel like sending me a chauffeur?

Ipad apps....

Ok, forgive me for not getting up on this sooner, we have been extremely busy. Below are a list of apps we have been downloading for Faith to try:

Look to learn: An AAC app for simple communications like "I want" things. You can download your own pictures to add to the list. You can also download pics to make a sort of story for teaching steps to learn something. You can customize the voices and several other topics but you can't really change the "I want" category....everything is "I want"....... This app is $25. I like the options to add pictures which we did but I wish you could change the I want category to be a little more functional.

Fish School: Just a fun educational set of games for young children. Fish move around in ABC forms and 123's, you can play with the fish and make them big or swim fast. The voices for this app are really cute and Faith loves this one! Very interactive and great for little kids. This one is .99

First words: This app is not worth spending your .99 on. It does show about 40 flashcard style pictures in categories but there is no sound or words or anything. Very disappointed.

Animals Soundpad: A very simple app with about 20 flashcard style animal pictures on one screen that can't be changed. When you press the animals they make the appropriate sounds. It's a cute one that Faith likes. I wish the pictures were bigger because she cannot isolate individual pictures but she likes that she can push a bunch all at the same time and they all make their sounds. This one was .99 (but there is a free similar one that is much better)

Trucks- ipad edition: A free app that shows big pictures of different heavy trucks and says the names. Faith likes this one but it is very simple.

Vocal Zoo Gold: A free app that is similar to the Animal soundpad but better. You can rotate your device and get different views. Horizontal will give you rows of animals and when you touch them you get the sounds. Vertical will show individual animals with their sounds and the word spoken. We love this app!

All of the ABA flashcards apps: Faith loves these, we downloaded several on Friday, the last day of the freebies. We got to keep them, so we are extra happy! Faith really enjoys the clear and beautiful pictures, her favorites are the ones that have the music. All the ones we have are wonderful! Worth the .99 per app!

Tap2Talk: Ok people....This app is a very simple free version of the recently released AAC PECS. This program is an AAC system specifically for Nintendo DS and DS lite! Very cool program for children who do not have dexterity issues and a cheap way for families to help their kids. For the Nintendo's the price is $99 per year. It's very cool! Now, the app for ipad is very SIMPLE but a good starter for kids just learning how to use AAC/PECS.

We started Faith's new AAC therapy yesterday. I have a whole list of other things to talk about but it will have to wait for a less busy day.

Treating our kids special....

Wonderful Ellen, had a post yesterday about people NOT treating Max special because he had a stroke. It's a great post and in many ways, I feel the same. But I wanted to add a few things about my perspective....

Don't treat her special by giving her anything she wants.

Don't treat her special by not calling her out if she misbehaves.

Don't treat her special by talking over her...like she can't understand you.

Don't treat her special by pitying her, this girl is happier than most and you can't pity that!

BUT...

Treat my daughter special because she is!

Look at her as a living miracle and take what you can from learning about Faith

(not her name but the word....faith)

My daughter is special because she was made this way to teach people to be thankful for God's infinite wisdom and love to HIS children. She is one of those children who

"SPEAKS" to you without having to say a single thing!

When people meet her...they usually say things like...

"What a blessing she is"

"What a good girl she is"

"She truly is a miracle"

GOD made Faith the way she is for a very special reason and I DO want people to take that into account when they meet her!

I want them to see her for the miracle she is...

I don't want ONE person to ever meet Faith and go away without being

TOUCHED BY GOD'S LOVE......