Rare Disease Day 2016

Just a little over 12 years ago we heard the diagnosis of Peter's Anomaly.  Back in 2004 there was ONE entry on the Internet about PA.  That entry told nothing.  The National Organization for Rare Diseases had a mention of Peter's.   We occasionally were handed photocopies from various doctors' books but they were lacking in details also.  Most of the doctors including one geneticist had to ask me what Peter's Anomaly was....It was a scary time. 

Today I read this article http://www.wonderbaby.org/articles/parenting-child-rare-disease and it brought back so many memories. 

I can remember thinking "Why couldn't Sam just have Down's Syndrome?"  Then at least we'd know what to expect! 

Still there is little info on Peter's Anomaly, but much more than there used to be.  We've personally met four other families now with PA- there is a FB page/group but PA is different in every case and every child.

If you would have told me when Sam was tiny and in the NICU that one day we'd all travel to Ukraine and adopt a little girl with Peter's I would have thought that you were crazy LOL!  But that's exactly what happened! 

Sam and Sarah both have PA but are different.  Sarah was only born with one eye and it was in much worse condition than Sam's.  Her eye had many more abnormalities than Sam's does and at her best, she saw light only.  Now her retina that was "in shreds" has detected and she sees nothing. 

Sam was born with two eyes- both smaller than normal and one was very smaller.  The smaller eye has had many more issues than the other eye.  We did transplants in both eyes and the smaller eye rejected the transplant within weeks.  We did the corneal implants on both eyes and the smaller eye ceased to function some years ago, also a retinal issue.  In 2013 the implant had to be removed from that eye as it was causing him pain since the eye was shirking but the implant was not.  It was a bit unnerving to look at to be honest.  The implant would somewhat freely move around in that eye.  When the implant was taken out, most of the remaining tissue was too.  It's been challenging but his larger eye is doing great!  This year will be 9 years since he received the implant!  He sees more than light but is legally blind.

Both Sam and Sarah are handicapped intellectually. Neither really talk but they do both understand some of what we say to them- that's called receptive language.  Sam does say Mama and No and occasionally will come out with another word or two.  Both of them will verbalize sounds back and to with us.  There's been a few times we have thought Sarah has said something too. 

Sam can walk, run a little, climb up stairs, go down the slide and swing on the swing set.  Sarah walks with a lot of help.  She can't really figure out where her feet goes.  She can swing herself for hours on the swing set and loves to be outside.

Sam is very mischievous, and loves to be naughty.  But he is also a love sponge and is very attached to us.   Just think of a tiny Dennis the Menace :)

Sarah is very easy going.  She has been home for almost four years and really just started showing negative emotions in the past year or so.  She will cry now if something doesn't go her way.  But she is learning that her cries will get results and that is so good  I love that she can cry now.  The first year she was home, I can only remember her crying two times.  Oh that's convenient  but not emotionally healthy for her.  She still doesn't cry much and is a very happy girl most of the time. 

Sam got a lot of the 'extras" with Peter's, he has a heart murmur, there were concerns about his kidneys for quite a while, and he had issues with maintaining his blood sugar levels. He has some bone deformities and he is TINY.  Sam is 12 years old, he just started wearing a size 8.  But the only reason he wears an 8 is he has a round tummy- 8's are way too long on him and I have to hem everything.  Small statue is often found in kids with Peter's. 

Sarah on the other hand is healthy as a horse!  Once she started gaining weight after we adopted her (at 5.5 years old she weighed just 19 pounds)  she is catching up fast!  When we first got home, I had to put away all the clothes I'd bought her and go buy a few baby clothes.  She wore a size 12 months!  Now 4 years later she wears a size 7/8! She is built thin, like a dancer so sometimes things are too big in the waist but she's catching up there too LOL! 

Not all kids with PA have mental challenges.  We met one little girl from China who is a genius.  But overall, I think the majority have some difficulties in that area. 

I've only met one other child with PA that had more overall issues than my kids and I don't think that little girl lived. 

Now the ODD thing is neither Sam nor Sarah have the genetic marker for PA.  Both have been "clinically" diagnosed with PA which means they have the symptoms, especially Sam.  Both are enrolled in a clinical study through the University of Wisconsin.  The researchers are really interested in Sam since he has so many characteristics of Peter's but it's not in his DNA.  Last year they asked Jon and me to have more DNA testing done because the idea is that there HAS to be another marker for PA than what has been found.  They hoped to find something in our DNA but thus far nothing has come up with any of us.  We don't have the marker either so for Sam it was just a "happenchance"  Sam does have a deletion in his DNA but as far as they can tell that doesn't correspond with PA.  Sarah's DNA is completely  "normal"  as is her MRI. 

Our kids are interesting that is for sure!

So is it scary to have a child, make that two, with a rare disease?  It is but it's ok!  After 12 years, I don't really obsess about the future, at this point, we figure we will deal with whatever comes our way. 

Rabbit's Trail.

Quick update on the children in the Philippines- I just sent a check for $5816 :)  Thank you all for your giving!  Their new family is planning on building a bedroom for the boys and a bedroom for the girls onto their house.  Of course they are dealing with several medical issues, school and supplies, clothes....  What a blessing that we were able to be a small part of this!  If any more funds come in, I will send another check to them:) 

The other morning, I took this picture of Sarah sleeping.  

 

 

Compare it to the picture I took the night we got home from Ukraine.  Sarah would sleep with her arms and legs up under her like a little turtle protecting herself.  She slept in that position for years, but now she is relaxed.  Most of the time she sleeps on her back now, which is a very vulnerable position for kids who have gone through trauma. 

Notice she has the same blanket:)   

 

I remember being so happy that night to have the girls home and all of us together under one roof.  I remember falling asleep (after traveling for two days - through three countries- three different flights-8 time zones) happier and more content than I had ever been in my whole entire life..... it's literally a snap shot memory in my brain.  

Last night's supper.....beef stew



 

Sarah's beef stew!

 

Our Magic Bullet bit the dust recently after almost 4 solid years of service to Ms Sarah!  It did it's job well!~!  BUT our new friend Nutri Ninja is amazing!!!  I feel like I went from the 1950's to the 21st century!!!!  This thing is powerful!!!!  It was only about $30 more and boy is it worth it!!  Life is soooo much easier.  It makes a difference when you use a machine several times daily,

When I went to pick out a new one, there were so many choices.  I agonized over which one to pick- I'm really not exaggerating.  Shopping tires me out mentally.  I don't hate shopping but I don't want a lot of choices LOL, it makes it too hard to pick.  In the town we live in, we have basically one department/mall like store.  I do the majority of our clothes shopping there, at least for the guys and myself.  It's just easier, not so many choices!  The only thing is they don't have nice clothes for Sarah and Selah's sizes and by nice I mean, "little girlish" not "ho" clothes.  My pet peeve is the size 7-16 girls' sizes clothes that look like adult clothes....UGH!  Anyhow......

We are looking forward to our oldest son coming home tomorrow for a week of spring break!  He is more than halfway through his second semester and loving it.  This semester he is taking 16 hours and working 18 hours a week.  He also has a girlfriend so he is a busy guy. We see him at least every other weekend and talk daily (usually) and text.  It's not been as hard as I thought it would be for him to be gone.  Last year just the thought of him leaving made my stomach lurch LOL.  But I determined I wouldn't be a helicopter mom - I actually would not let myself call or text him for the firs few days except in response to his calls or texts.  We are so happy for him with everything.  He made all A's last semester except for one high B.  He's on target for about the same this semester.  He's having a blast even though he is extremely busy.  It brings back memories of my years in college there.  Except the freshmen are so much more sophisticated  that we were!

My Freshman picture

 

 

Me working at the cafeteria making sandwiches.  It was a great way to meet guys.  I got out asked out for my first college date after I got off work one night.  We went to Disney's Night of Joy- that was a HUGE deal back then LOL  But by the next semester I was able to get transferred to the Library-at least I didn't smell like hamburgers and fries after I got off work!

Well tonight's blog was just a "rabbit's trail" all over the place wasn't it?  Have a great weekend everyone! (a Rabbit's Trail is when  a preacher is preaching and just totally goes off subject or all over the place)

Thank You!

My view from the hammock!
 

What a beautiful day we are having here in Florida.  The kids were outside for a couple of hours today, including Selah.  It was just picture perfect!  Sam was playing hard today and surprised me by going on the slide by himself.  He also pushed himself on the swing.  He is having a "spurt" of independence and I love it.  He is feeding himself breakfast every morning- slowly- with lots of messes but it's happening.  He eats grits most mornings with an orange and he is doing a great job. Grits tend to stick to the spoon pretty good.  And if you don't know what Grits are....I'm sorry!  They are from corn and oh so good.  It's one of the first thing a real Southern baby eats:)


There are some great videos I've taken lately but I'm having issues with putting them up.  I'm going to try and get that figured out before long so I can show everyone the progress the kids are making.

GREAT NEWS!
The fund for the Philippine family has grown to $5765!  We had donations come from far like Seattle and Rochester NY (our other home town) and from Orlando, Tampa and local friends as well as folks in our church.  This has FAR surpassed what my goal was and I'm so thankful. 
Here are some recent pictures.

The kids all had to have medication for various parasites.  They all have had physicals.  Thankfully none of them tested positive for TB which is amazing! 




It was discovered after a complete physical that one of the girls needed glasses.




The missionary family has bought them all new clothes as they came with little





The youngest are finally having a chance to be kids, not just caregivers. 




So much has changed for these kids in the past year, both of their parents have died, and now they have a new family.  They are doing really good, but they've been through a lot of trauma and uncertainty. 

My personal feeling is God heard the prayers of this dying woman.  I'm a mom, and I know if I were dying, my prayers would be for my children that I was leaving behind.  This family had absolutely nothing so the mom knew only God could help.  Thankfully the pastor/missionary whose church they attended was God's answer to her prayer and we've been a part of the answer too.    I feel a bond to this mother, for a few months I was sending her a food supplement with the hopes it would help her.  I actually did not realize she was so close to death.  I'm just so thankful that we've been able to help in this situation. 

Thank you all again.  I am humbled by the trust you place in me to send funds.  I'm such a suspicious  person that I probably wouldn't give towards something if I didn't know the person -personally so thank you to the folks that don't personally know me but send in money towards Orphan Care.  I am very careful to have our church bookkeeper put the funds into the Orphan fund and by law, that fund is only used for projects like these.  Every penny goes to the project, none of it goes into the church's account for anything else.  I have a deep belief that God looks out for the orphan and I believe He sees what you all do and He will remember you for it.   And I also believe He would deal with me if I misused a penny of the money!

Recently I was talking to someone and out of the blue I said "if I could just live in an special needs orphanage somewhere and take care of kids all day- that's what I'd love to do!"  I did say I'd like some help with the diapers LOL.  But when I really think about WHAT I'd want to do with my life, that's it.....    Of course I have my children to take care of and I enjoy every minute of it.  But I had hoped we could have done something on a larger scale, but life intervened and changed our future when the accident happened.   So I put my effort into raising money for worthwhile projects, they maybe small projects in the scheme of the Christian world, none of them huge but they are huge to the ones that are helped by them.  AND you all are a part of that!  Together with the readers of this blog and folks in our church who listen to my appeals, we've helped raise money for several adoptions, dug a well in Ukraine, helped an orphanage in India, sent supplies to an orphanage in the Philippines and now are helping a family of five there!  Thank you for helping me get this done!

You can still participate by giving
Grace Church
7060 Berry Road
Zephyrhills Fl 33540
please clearly mark it ORPHAN FUND

Thank you!!!!!

Happy 12th Birthday Sam!

Happy Birthday to our " one in a minion". Sam is actually 1 in a billion with his rare chromosomes😍. We love our little man who changed our whole life in a good way. He has taught me patience & slowed my Type A personality down. He's taught me to enjoy the little things. He taught me to lean more fully on God & to trust Him because He is trustworthy no matter what the circumstances look like. He had taught me a love that I never knew existed. I'm so thankful for the many times God spared his life when he was younger & that He gave him back to us after the accident. Sam's probably seen heaven more than anyone still alive! When I was younger I thought having a disabled child would be the worst thing that could happen to a marriage or a family.... Sam taught us it was the BEST thing that could happen to a marriage & a family! His life gave us the courage to adopt three other children & to get involved in the special needs adoption world to help orphans. His life has made a difference in so many ways!!!! I love you Sam!

 

 

He had a good day- we got to play outside for a couple of hours.  Maybe I can figure out how to save the video to my computer so I can put it on here. 

 

We got Sam a TV for his room - it's the new kind (or new to us lol) that can connect with the internet.  Sam loves watching Bro Gary from VBFA on YouTube.  Now (once Steve figures it out this weekend) he can have it in his room.  We got him a tablet, but that's a bit too small for him to see very good.  I think Sam will be very happy.   It is challenging to find things to buy our little ones for presents, they don't play with toys like other kids their ages.  Sarah still doesn't care for any toy.  Sam likes light up ones and he is in love with a horse that someone sent to him.  He holds onto the horse all the time.  Sometimes it is "hit or miss" in trying to figure out something for them.  But I'm pretty sure Sam will like this present!

 

 

It's been an amazing journey these last 12 years, we had no idea where life was going to take us, it's been an adventure. 

Dirty Shoes

Look at these filthy tennis shoes.  Aren't they beautiful?  They are Sarah's, a former "bed ridden" orphan from Ukraine.  Even though she is not walking on her own, she walks by holding onto us and she plays on her swing set daily.  She will swing herself for an hour at a time, stopping herself by dragging those shoes in the dirt. 

For the first 3 years that we had her, I would give away or take to a consignment store all her outgrown shoes because they looked brand new, NOT anymore I'm proud to say!   I love these dirty tennis shoes and the little girl that wears them!


Sarah is completely blind so she sometimes has a problem falling & staying asleep.  We've chosen to work with her rather than put her on drugs.  So this is what I found recently at 2 am!  She was asleep on the floor.  We check her throughout the night if one of us wakes up.  She is usually quite happy to be up and often thrilled for us to come in!  We are working on this problem by giving her as much outdoor time  and as much physical activity as possible.  It helps but it is a real problem that many blind people face. 

 

 

 

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Well it is time to start a garden.  I'm figuring out how and where the big garden will go in but I've done a few containers.  I am addicted to plants!

 

Left to Right

Christmas Cactus that I've been growing from a small piece I got from a friend. Parsley, Oregano and Lavender.   

 

 

And Shad & I have been fighting the "devil weeds" daily!  We have the absolute worse stinging weeds in our yard that I've ever seen.  There are three main kinds and they are absolutely awful- from the devil himself.  My theory is with all the tons of dirt that was brought in to build up the land since our area is prone to flooding and the sod that was brought in....there were seeds of these "devil weeds" in the dirt.  Some are so shallow that it seem they may have been in the sod itself.   They do seem to cluster together.  While they are not foreign to Florida, I've never ever seen such a growth of them as we have.  They are absolutely ferocious- and affect me awfully.  I got stung yesterday and today while removing them and it gave me chills and make me feel sick on my stomach.  Even with washing and putting cream on, I'm still feeling the effect of it.  We have the most of the front and side yards done.  We just have the back area to do that includes the whole area that stayed underwater last year which has  none of them so we are probably more than halfway done.   We have big plans for the yard this weekend that includes Steve who is going to be home- our first mowing of 2016!  LOL  All these weeds have to be gone otherwise they will spread more.  I had already tried to weed killer on them, didn't make a bit of difference.  I'm telling you they are devil weeds!

(Shad is earning money & he is doing a great job.  He is better than me, he doesn't get stung by them)

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Quick update on our family of five from the Philippines

 

 

 

 

 

 

They are doing good with their new family.  Between our church and this blog $5225 has come in to help the family!!!!  I'm so excited to be able to be involved in this.  Thank you to everyone who has given.  I truly believe God will bless you!

 

 

A Family in Crisis!

We recently learned of a couple of ministries in the Philippines.  We've been able to help out both ministries through our church and another ministry that helped us send some CARE packages to these ministries.  It's been great to be involved in this and to see our church get behind this and bring in boxes of supplies and give offerings too. 

I became friends with a couple of the missionaries who oversee these ministries.  I learned from one of them about a family.  The father had died last year and the mother was very sick with TB.  There are 6 children.  They are so very poor.  We were able to send some Pedisure to them as the children were malnourished and the mother even more so.  I think there seemed to be some hope that she would recover....but she passed away last night. 

Our friends who have worked in ministry there for decades, have committed to raise the children.  They've already raised their children and they are now starting a new adventure.  The Philippines doesn't have the social programs we have in the United States so our friends will not receive any help from the government.  They will be raising 5 of the children, one of the teens lives on his own and has some drug issues already.  He needs prayer, he has been through so much already.  Our friends are willing to take him too, but it seems the teen wants to be on his own. 

This woman's death has affected me.  Just think about it, her husband died last year, they were so poor, she was so very sick, she knew she was dying despite receiving some medical attention and there were six children to think about!  That just makes my heart hurt! 

My biggest fears is dying and leaving my little ones.  Of course I love Steve & Shad but they have each other, Steve's grown and Shad's going to be soon.  The little ones will always need a caregiver.  It's like having small children forever.  It's a big responsibility. 

I'm so thankful that some months ago, the children's future was set in case she did not make it.  The missionary couple assured her that they will raise the children.  I'm so glad that she had that peace knowing her kids would be ok when she was gone.  She was only 46 years old. 

 

 

 

 

 

 

This just makes my heart hurt for all of them.

 

 

 

 

Today our friends took the younger three out while the older teen girls made arrangements at the funeral home and other errands they needed to do. 

 

 

 

 

 

 

 

 

So I'm coming to y'all to ask you to think about giving to this family. 

I know what it takes to raise 5 kids!  They have a habit of eating!  They grow out of clothes & shoes- quickly!!  They need supplies for school.  My friends don't have anything for them and the children are not bringing much with them. 

Our friends are not super heroes or super Christians , they are doing just doing what the Bible tells us to do. The Bible commands Christians to take care of widows and orphans.  It should be something everyone who calls themselves a Christian should be doing.  If the Church (all denominations) did what it should do, there would be little need for social programs. 

Well you have a chance to do something!  I want to raise some money as a one time gift and I also want to help them on a monthly basis.  We are going to be sharing this at our church also.  If you'd like to be a part of this you can send a check or money order to :

GRACE CHURCH
7060 BERRY ROAD
ZEPHYRHILLS FL 33540

Please mark Philippines Family  on the check and every single penny will go directly to them.  There will be no fees or anything taken out of it. 

The children are:
Amalia 16 years old
Melody 15 years old
Denver 10  years old
Angelo and Angel 7 years old twins. 

If you'd like to send any new clothes/shoes, socks underwear etc....  you are welcomed to do that too, even toys!  The children are small for their ages so any pants should probably be the kind that have the buttons on the inside of the waistband that can be tightened to fit.  I'm pretty sure the clothes should be summer clothes, I don't think it gets very cold where they are!  I can send them a box of supplies/clothes. 

My heart is touched thinking of this family.  If you read this and you feel something, please say a prayer for all of them but do something too if you possibly can!  I'm committing to give to this family.  You can send in for them through the month of February.  There's no problem getting a check to our friends at any time through a stateside bank and there is no fees!!!  That helps a lot!  I'll wait to the end of February to send out a box.

Thank you all!  No gift is too small if we all participate.  We're not wealthy by any means (LOL) but we have so much more than most of this world has because we have running water, electricity, food on our table, working toilets and showers, easy access to medical care...even two vehicles. Even our poorest in America have more than so many in 2nd and 3rd world nations.  I've seen abject poverty and it is heartbreaking.  There are no safety nets in many countries like we have in the US and other western nations.  I can not help but feel we have a responsibility to do something with what we have.  Thank you for joining with me to make a difference for this little family. 

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Today we got back the results of Sarah's DNA testing.  She had the most up to date microarray testing and they found NO abnormalities.  Her MRI is also normal......   NOTHING to explain all her delays and disabilities!

The funny thing is although she presents clinically with Peter's Anomaly- she does not have the marker for it.  NEITHER does Sam and he has even more characteristics  of Peter's than Sarah does.  She is 9 and already taller than Sam who will soon be 12.  So as with Sam, they will be further testing her DNA to see if there is another marker that has not yet been discovered for Peter's.  Sam has a very large deletion in Chromosome 4Q 35 and there has been questions about that.  In fact when we went with Sam and Sarah last year, they also took both our blood to see if there could be anything discovered  pointing to another marker for Peter's.  They are enrolled in a study through the University of Wisconsin but we go to a Geneticist in Orlando.  It's all very interesting to me- it's like a mystery.  Just since Sam was born, genetic testing has come so far.  His deletion did not show up on the testing we had done when he was a baby.  It only showed up as DNA testing got more advance.  In a few years, we might end up with an answer to Sarah's issues too. 

When we were having our blood taken for Sam's testing the geneticist's nurse asked if she should draw two vials, one for each child.  We had to remind her that Sarah is adopted.  She thought they were twins:)

 

Sarah and Vermont taking a nap after lunch today.  She's not a big fan of animals but she didn't mind Vermont.  Sarah loves that chair.  I found it at a thrift shop for $40 it has been well worth it!  I thought it was going to be my chair....NOT!   Well she will share it with me if I sit and hold her :)  Love my baby girl. 

Home School!

Well I did it!  After over 9 years of battling with local school administrations (they changed frequently)  I decided to home school Sam, Sarah and Selah.   We had seriously considered it this past August but we thought with the move & our oldest leaving for college that it was just too much change.  Then I thought about doing it starting in January but I had the whole breast cancer scare & surgery to deal with so I put it off till I knew whether I would have to have any follow up treatments. 

You may not realize but the three little ones were already on "hospital homebound" which meant that the teachers/therapists came to our home.  They didn't attend a school.

I fought so hard for so long to get the kind of services I felt Sam and then later the girls needed.  I've written on this blog some of the issues I've had over the years.  We've had some great teachers & a few crazy ones, enough crazies that I would never ever allow them to go to school, along with their medical/emotional needs!  When you have children who are non verbal, it's hard to trust people, especially if you'd had issues in your own home with teachers over the years.  I've dealt with crazy administrations, one lady who would talk to me in a certain accent.  Believe me she was not from the country she pretended to be from!  She had failed at her job and was given a position to work with special needs kids rather than being fired as she should have been. I've had ample reason to pull the kid(s) out in the past but I continued fighting on. 

Currently we were very satisfied with our teachers, however both girls' IEPs were out of compliance because they had had two therapist quit.  And the administration talked me out of Orientation & Mobility so they wouldn't be out of compliance in that area.  But it was ok overall.  I just didn't feel their needs were being met.

What convinced me to do this, was several things.  We needed order in our home.  Our kids usually do really good on a strict schedule and that was hard to maintain when teachers were absent or had other meetings that they had to go to.  We had very few weeks when all of their teachers were able to follow their schedule (not always their fault).  My goal is to potty train Sam or at least try and I could not do that around people's schedules who may or may not come.  Then throw in the holidays, teacher work days etc.....it gets too crazy.

Also over Christmas break Sam did so good, but the day his teachers came back, he started biting himself on his arms.   Sam is very well behaved normally and in all kinds of social settings but we weren't seeing that with school.  When a child is upset, you listen to what they are saying- especially if they are non verbal.  He would be upset all day long & often into that night.  That is just not right.  Sam has always had a hard time expressing frustration and trying to get attention, we've gone through some times when he would throw toys down the hall.  One time I took every hard toy out of the house for months until he learned not to throw.  He likes to squeal loudly, sometimes it's a happy sound but lately it was not a happy sound.  Now I'm not saying to let a child- any child dictate things but parents also must take into account everything when dealing with their kids.

But the biggest thing to me was that their goals were not always realistic or helpful.  I would bring this up at every IEP meeting explaining that they needed to learn life skills such as eating on their own, getting in and out of a car, potty training, etc.....   There had been some more practical changes this past year (thanks to the teachers!) but for the most part I wasn't seeing any progress that transitioned to REAL life.  The teachers were not able to write goals like that due to their guidelines. 

Obviously we work with them constantly anyhow.  We do the same things over & over for years, and sometimes we see progress.  For example, we really wanted help with teaching Sam to get in & out of the van.  I asked for it many times a few years ago ( he had Orientation & Mobility as well as Physical Therapy at the time. )  Only once did someone work with him and they were basically ticked off the whole time.  So we continued to work with him and now he can do it by himself.  I was concerned because I was afraid we'd hurt our backs or drop him trying to get him in! 

I've seen that most of what our kids do, they learn from us.

With our little ones, we realize that they do not have the ability to read, or color or do a lot of things that will be building blocks towards more regular education.  That does not bother me to say it.  I know where my kids IQ's are and I realize that there is only so much "regular things" that they will successfully accomplish.  In other words, I'm not expecting them to have the same life as my other boys.  That in no way diminishes  them or their need to learn life skills that will help them (and their caregivers) function better.  I'm  just very realistic in my outlook. Sam and Sarah are unique in that they have lower IQs and are visually impaired but yet are mobile. 

I'm sure I'll get messages & comments that will say "if only you believe- they can do anything"  Well that's just not true.  If a person does not have the ability to do a certain task like reading a book, they can be in class 24/7 and they will never be able to do it.  BUT there are many things they can learn to do, it might take a longer time, for example Sam was about 3 when he started walking, he had the ability he just needed more time.  Sarah, well we nor anyone we've taken her to, really knows if she'll walk given her age and where she is right now.  (When I say WALK I mean walk well enough she could go from place A to place B out side the home with little assistance)  She will walk somewhat if we hold her hands or with a walker & she has started taking a step towards us if you drop your hands and tell her to "come"  But in some cases the ability to do certain things is just not there no matter how much therapy or instruction is given.   It's important to always try things, give a child every chance and opportunity but be realistic & don't push a child beyond his/her ability.  Challenge them-YES but don't frustrate them. 

I feel with homeschooling them myself I'm able to focus on THEM and work with them from the time they get up, till they go to bed. Before I would rush getting them ready in the morning so everything was done before the teachers came & then sometimes the teacher couldn't come or would be late.....  In doing that, I missed out on life skill learning!  One of my goals is for Sarah to learn to help us dress her.  She tries and she'll throw one arm one way and get her hand caught in the sleeve.....it's challenging to dress her.  In the mornings I need time to work with her on that. 

We are keeping our private therapist for the girls and I'm looking into therapy for Sam as well as feeding therapy for Sarah (who only eats pureed foods)  These are things that are needful but that we weren't really getting with the school system. 

Last night I was thinking I have homeschooled Steve & Shad at different times.  When we first began to pastor at our church, we lived in another town and Steve went to a Christian school in still another town!  It was an intense time for us!  I homeschooled him from January- June using his old school's curriculum.  Then in August he started 5th grade here.  Then when the accident happened I homeschooled Shad and Steve while we were in NY   That was Shad's 2nd grade year and Steve's 11th grade year.  We ordered their school curriculum so it was not too hard for me.   Steve ended up being homeschooled his senior year because of where he was in the curriculum, he only needed a few more books to graduate so it was cheaper than him going back to the school once we were home.  Plus he finished up in January of his senior year.  Steve & Shad have always gone to Christian school, not because we are snobs or rich but because we like them being taught by teachers who have a Christian world view. Our school is very open to families, even those who have no faith, & I like that.  And by the way, most of the kids there are there on McKay & Step Up For Students scholarships.  We have a school choice program in Florida that is awesome!

So for now my "curriculum" will be Life Skills along with their regular private therapies.  I applied for a grant http://www.specialneedskidsathome.com/   for a Personal Learning Scholarship Account
if we receive that, I can use it to buy various things like curriculum, therapy, adaptive learning devices etc.  We have many things/toys that teachers use with them - I have quite the collection and they are things we've work with all the time.   The goal is to help them be as self sufficient  as possible. 

I'm looking forward to this.  I believe this will be a good thing for them.