Back to School...

Joe was the first to go back to school.  While we had a pretty good summer I think it was a little underwhelming for Joe.  I could tell he was really excited to go back to school.  And frankly, I was excited too.  He is a lot to handle 24/7.  Its nice to have a break from him during the day so the rest of us can get some things done uninterrupted.  We are thankful to have the same life skills teacher as Joe had last year.  We are looking forward continued progress toward Joe's goals throughout this school year.

Christine returned to developmental preschool a couple days after Joe.  Its nice that she has the same teacher and therapists that Joe had in devprek.  I'd be a lot more uneasy if it wasn't for the familiar faces. Christine is doing well in her class. Although she definitely seems ready to see me when she gets home.  This is the first time we've had her ride the bus.  Its a little bittersweet for me... she's my baby! 

Nate and I have taken advantage of a little time alone with a few fun outings to kick off the school year.  We have started to make a tradition of going shopping to pick out a "back to school outfit".  Its a stereotypical thing to do for most kids... except that he's homeschooled... and we're going to Goodwill.  ;-)  We've tackled Chuck-E-Cheese, gone hiking at the 100 Acres nature park at the IMA, the library, and had a lunch playdate at the park with some friends. 


For me there are mixed feelings about getting back into the routine of the school year.  While there are a certain amount of freedom available in summer that we'll miss there is also a bit of comfort in the routine that we will soon settle into.  We were pretty relaxed this summer, lots of late breakfasts and lazy days around the house... getting up and moving bright and early is proving to be a challenge for me.  I'm going to have to start adjusting my bedtime.

On the upside, I'm hoping the time alone with Nate will allow us to do some fun things together and tackle our new curriculum.  Nate can be tricky sometimes.  While he is very intelligent, he flip flops between being frustrated at something being too easy and then being frustrated when something is even a little challenging.  He is very critical of himself and gets down if he struggles with learning or remembering anything.  Which makes things hard on both of us at times.  One of many things we will be working on together this year.

Proverbs 3:5-6  -  Trust in the LORD with all thine heart; And lean not unto thine own understanding. 6 In all thy ways acknowledge him, And he shall direct thy paths.

End of the School-Year...

Its that time of year...  when every mom (whether homeschooling or not) is slowly reaching melt down.  Its been a long hard year and lets face it, we're at the end of our rope.  I loved Jen's post expressing her end-of-the-school-year-angst.  She said: We are limping, limping across the finish line, folks.  I totally agree!  I have been counting down the days until we can say "summertime is here"!

We started the school year using (and liking) Heart of Dakota.  But by Christmas break Nate and I were both a little bored.  We have been supplementing through the spring semester and doing a lot of "unschooling" things.  I have researched and settled on a curriculum that we've been trying out for next year.  We are going to be using Easy Peasy All in One Homeschool.  Basically its one mom's attempt at putting her children’s school assignments online.  She uses almost exclusively free online resources. She is sharing it to make it available to other families as well. While it helped her family's school days run very smoothly, the grander goal is to help other families, especially anyone feeling like they couldn’t homeschool because of time or money pressures. 

Joe completed his kindergarten life skills class. He has made some really good progress this year, especially gaining strength in his legs and getting better at walking with his walker.  I have really appreciated the efforts his teacher has made to include and challenge Joe in her class. Yay for being in Miss Sarah's class again next year!

Christine was approved for CSHCS to help supplement her medical and therapy expenses.  She adjusted well to the MWF developmental preschool for the last month of the school year.  All the therapists and teachers love her.  I mean, how could they not?  She is the cutest!

We're looking forward to having a laid back summer.  I feel like our life is so scheduled sometimes... all the drop-offs and pick-ups, the therapies and doctor's appointments...  summer will be a refreshing slower pace.  But frankly, I am glad that our school system is on a modified calendar and summer break is only June and July.  To be completely honest, its difficult to have all my kids all the time.  I hate to pull the special needs card but I'll do it.  It is seriously hard to have two kids who require so much from me.  I'll miss the bit of a break I get from having Joe in school.  It makes outings more challenging when I'm juggling Joe and Christine on top of all the other stuff life throws at me...  but the break from routine is good for all of us and we have some fun things planned this summer that will help pass the time on the long summer days.

Joe's IEP

Just a couple of weeks ago I had Joe's IEP meeting with his teachers and therapists.  I remember how scary the first one was.  I stressed a lot leading up to it, then I cried during and afterward...  Each time it gets less and less overwhelming.  One thing I have appreciated is that he has had the same PT and OT since he started developmental preschool nearly three years ago.  So they really understand how far he has come and they rejoice with us in his progress (both big and small).  A newer therapist or teacher may not have the same appreciation for the work that he is doing if they hadn't seen where he started.

While progress for Joe is slow (sometimes painfully so) it is progress none the less and we are thankful for that.  He is such a sweet boy and he is a blessing to those who know him.  It warmed my heart to hear his teacher and therapists share little stories about things he has done at school.  You can tell that they really care about him and want to help him be the best version of himself that he can.  I am so thankful for all the special people that have been brought into our life to work along side us to help our kids become who God wants them to be.

Psalm 28:7 -The LORD is my strength and my shield; My heart trusts in Him, and I am helped; Therefore my heart exults, And with my song I shall thank Him.

Walkin' the Line

Joe has been getting some really great reports from his teacher at school.  She said he is using the walker independently in class. We are all making an effort to encourage Joe to be more independent and mobile.

 

Its difficult to do so when I am alone with the kids but anytime I have an extra adult with me we are challenging Joe to take steps either with his walker or while holding our hands.

Communication progress seems to be slow.  But we are seeing some improvements here as well.  Joe is using a few signs and also some augmentative communication devices to help him tell us what he needs/wants and we hope to be moving on to more advanced devices in the future.

Recently Joe has demonstrated the ability to climb onto Nate's bed (and subsequently pull the curtains down) and to take his shirt off (in the middle of a restaurant).  Both great skills to have... just ones that need to be used with restraint that Joe does not yet possess.  ;-)

We are proud of the work he is doing and we pray that God will continue to help Joe grow in strength and abilities throughout the coming year.

“Faith, mighty faith, the promise sees, And looks to God alone; Laughs at impossibilities,

 And cries it shall be done.” ~ Charles Wesley

"May your trails be crooked, winding, lonesome, dangerous, leading to the most amazing view. May your mountains rise into and above the clouds."
- Edward Abbey

Joe - Fall Update

Joe and Christine saw ENT and genetic neurology last week at Riley.  Both were 2+ hour visits with only seeing a doc a fraction of that time.  I find it hypocritical that they can be over an hour late to my appointment with them but if we had been 15min late they would have rescheduled us.  Anyhow... nothing new really come up at these appointments. The ENT visit was a pre-ABR appointment.  Since Joe and Christine were homebirths we did not get their newborn hearing screen.  Because they don't exactly respond appropriately its difficult to test their hearing.  It looks like they both are going to need to be sedated for this upcoming hearing test (the ABR).  That test will take place next week and will determine if either of them has any hearing impairments.  Though their speech delays are probably not related to hearing loss it is simply something that they have to rule out.

 The genetic neurologist gently told me to stop looking for a name for whatever is the cause of Joe and Christine's delays.  He says even if we find a name to put on it, it won't change the treatment or outcome.  While I understand what he is saying, it is not what I wanted to hear.  I was a mess the whole rest of the day... maybe even a little still.  I don't know how I am supposed to be ok with all this.  What am I supposed to do as a mom?  Should I run myself and my family ragged searching for a name or a fix that may or may not be out there?  Am I a bad mother if I do stop looking for answers?  Its all exhausting.  I don't know what to do or think sometimes.

 Otherwise... we are seeing some progress with Joe's therapies lately.  I had a great parent teacher meeting with his Life Skills Kindergarten teacher.  He is walking at school in a Kidwalk without help and also in a posterior walker with some assistance (see video below).  He is using some communication devices to make choices at school and at home.  In the video above Joe is using a communication device to play Twister with the boys.  Its very exciting!

 

I often have days when this life is overwhelming but somehow I manage to remind myself that God knows what He is doing.  And someday He'll answer all my many questions.  But today is not that day.  So I try to keep moving forward the best I can and take things one day at a time.

 Psalm 32:8 “I will instruct you and teach you in the way you should go; I will counsel you and watch over you.” (NIV)

New School Year Ahead

This year I am using Bigger Hearts for His Glory (Heart of Dakota) for Nate's second grade curriculum.  I am getting more comfortable supplementing if/when I find that something isn't working for us.  We're only a week into the school year and I'm already considering another handwriting program.  Nate and I both are still getting the kinks worked out and trying to find a routine that works for both of us.  We've had a few battle of wills this week.  Hopefully those will subside as we get settled into the school year.  We are looking forward to resuming activities with our homeschool group.  A few families from our church are joining this year so we're excited to have our friends join in the fun!

Joe has started in a Life Skills kindergarten class.  So far he seems to be doing well.  We get simple updates daily from the teacher letting us know what activities he did that day.  The teacher said the class is very focused on communication and that is very good for Joe.  He needs a lot of work in this area because he is getting so frustrated at home when he cannot express himself and tell us what he wants/needs.  Joe is also continuing with outside PT, OT and Speech.

Christine is working hard in her First Steps therapies.  Earlier in the summer we had some therapist swapping and we have been getting used to the new schedule and therapists.  Christine has made some really good progress since her last quarterly report.  She is slowly but surely working on getting the hang of crawling.  We keep thinking any day now its gonna click and she'll be all over the place but she's taking her time for now.  She has been very jabbery lately.  She is trying lots of new sounds and being very intent.  So cute!

We've been so busy.  Isaac's new job keeps him away from home 9am-8pm every day during the week.  We only have meals together on the weekend.  While we have the occasional guest most of the time the kids and I are on our own.  It makes my days very long. And Joe and Christine are in the middle of another series of doctor's appointments (which are wearing me out on their own). I have had plenty of days when I feel like I'm at the end of my rope.  But I am thankful for the help of my parents and Jess providing help and company.  I don't know what I'd do without them. 

Proverbs 1:8-9 Hear, my son, your father’s instruction, and forsake not your mother’s teaching, for they are a graceful garland for your head and pendants for your neck.

School's Out for SUMMER!

Well, we're finally ready for our school-year-end-review... Nate has been a good student throughout his first grade year.  We enjoyed being a part of our homeschool group again this year.  We had classes, field trips to a dairy farm, Indiana World War Memorial, and other fun activities.  We are planning on continuing with the same group in the fall.  We are eager to have some families that we know from church join the group as well as meet new friends too.
This boy amazes me with how much he absorbs!  He excelled in nearly every subject this year.  We did work in Bible, History, Science, Math, Writing, Reading, and   He is voracious reader already.  On top of his favorites like Magic Treehouse and ABC Mysteries, Nate has also been reading books from the Treasury of Illustrated Classics collection.  They are adaptations but still big reads for a not yet seven year old.  His favorite, that he has read three or four times now is Moby Dick.  We love telling people that is his favorite book just to see their reaction!  ;-)
All that said, Nate and I are both very much looking forward to a break from the regular school routine.  Toward the end of the year we were both starting to get cranky about school.  He had worked ahead in most subjects so I was trying to fill in where I could to keep us going through the end.  It will be nice to get a couple months off and hopefully we will both be refreshed by the time we start in the fall.

 Joe had a busy school year too.  He has been working hard with PT, DT and Speech therapy.  He continues to enjoy being a part of his class.  This was his last year in developmental preschool.  We met with his team of teachers and therapists around his birthday to discuss his IFSP and he will be moving on to a Life Skills kindergarten class in the fall.  We met his new teacher and she said focuses a lot on communication which I am very excited about.
Joe is pretty limited in how much he can communicate with us right now.  He is getting increasingly frustrated because he cannot tell us what he wants and needs and frankly, so am I.  He resorts to screaming out of frustration and desperation a lot.  It is exhausting for all of us.  Here is hoping that we make some progress in this area soon.  For my sanity's sake! 
One big thing to happy lately is Joe recently was able to use a regular (non-toddler and non-handicap!) swing all by himself!  I have attempted it before with him but he only managed to stay on for a minute or two before.  This time he enjoyed swinging like a big boy for ten minutes or more before getting tired.  This is very exciting for us because we have been limited to going to parks with handicap swings since Joe has outgrown the toddler ones.  Very exciting progress!

Christine has been a busy girl the past week.  She has been pulling up to tall knees (as you can see in the picture).  But even bigger than that is the huge milestone of crawling!  We have been ecstatic about this! Every chance we get we take turns coaxing Christine to come to us, whether its a few inches or a couple of feet we are all very excited to see this new step forward!  Joe never has crawled (he went straight for hopping), so to see her properly go hand, hand, knee, knee and inch her way forward is very cool.  As stressful as things have been around here for awhile it is refreshing to have something big to be excited about! 

We have put together a Summer Bucket List that has lots of fun things for us to do both as a family and with friends: go to a free summer movie, write letters to family and friends, trip to the zoo, go to farmers' market, DIY Sidewalk Chalk Paint, watch the sky for cloud shapes, go to the aquatic center, roller skating, make splatter silhouette artwork, water balloon fight, craft camp, glow in the dark bubbles, etc...
As far as summer traveling... since Isaac recently started his new job we probably won't be taking any trips for awhile.  But my inlaws made the big move and are living at their lakehouse full time now.  So we plan on making the 3 hour trip up there a few times this summer for some lake fun. 

And of course my baby sister is getting married in August and we are a DIY family so there will be lots to do in preparation for the big day.  And my other two sisters are pregnant, due in September and October... so we are sure to have a full fall schedule as well!


He that gathereth in summer is a wise son: but he that sleepeth in harvest is a son that causeth shame.  -  Proverbs 10:5

K-bound

Today we had Joe's kindergarten conference with his IEP team: teachers, therapists, school staff, etc.

These things are always difficult for me. No one likes to be reminded that their almost five year old is developmentally 6-12mos old. So much of it feels like its reminding us of all the things that Joe cannot do. But I really felt that his teachers and therapists care about him and did what they could to emphasize his strengths and the progress he has made.

We are planning on having Joe join the Life Skills Kindergarten class. There will be a big focus on communication and learning independence through skills like dressing and feeding himself, things like that. He will be attending full day, except for days when he has outside therapy appointments.

I am nervous but excited about this next phase. In his short life Joe has found innumerable ways to push me outside of my comfort zone. Life is not how I imagined it would be ten years ago. Or even five years ago. But in some ways it is exactly what I thought it would be. I have three beautiful kids and a loving husband, and that is something that I have always wanted. Just some things are different than expected. And that is God's plan. We take things one day at a time. Some days are good and some are a challenge from beginning to end. But every day God is with us helping us through whatever comes along.


For we are His workmanship, created in Christ Jesus for good works, which God prepared beforehand so that we would walk in them. Ephesians 2:10

JoeJoe

Poopy fingers were becoming a daily problem here. Joe has taken a liking to putting his hands down his pants (and diaper). Its not easy to find onesies in a size 5T... So we had to improvise. I bought bed corner straps at Walmart (almost identical to these I found on Amazon). We attach this strap to Joe's shirt in the front and back (between his legs) to keep his shirt tucked in and his hands out of his diapers... so far so good! We have yet to have any poopy fingers since we implemented this system! Yeah!

Joe has developed a jealous streak. I thought that we would have trouble right after Christine was born but he seemed unaffected by her presence until the past couple of months. Now he throws a fit if I sit to nurse her, or anything. There have been a few times that I have resorted to sitting on the stairs to nurse Christine because Joe wouldn't stop grabbing and pinching both Christine and I while she was feeding. Its been very draining. I have run out of energy and patience.

Joe has been taking some good steps lately, literally. With proper support he is actually taking some steps. It has been so encouraging to see this happening. Milestones are few and far between with Joe so this is a really big deal for us. We're discussing the possibility of getting him a new walker that would hopefully encourage him to initiate more reciprocal motion with his legs instead of trying to scoot around two footed. Whenever that happens then we will then be able to adjust his old walker to fit Christine and start working on walking with her.

Coming up after the new year Joe's school schedule will be changing... I had him transferred back to the AM developmental preschool class. I am really hoping that he'll go back to what we were doing last year: school, lunch, nap... because non-napping Joe has not been a good thing around here. He has been irritable and whiny. Even though I'm not looking forward to having to get him up early to be on the bus, I think ultimately its going to be better for our family schedule. Also, I have been talking with his PT (outside of school) about getting him into OT and possibly Speech at that office as well. So hopefully all these changes will go smoothly.

Joe update

Joe recently got new orthotics. The Pediatric AFO is a molded leg support to help maintain alignment of the bones in the foot and ankle. An AFO will support the foot and provide maximum stability if weakness is present. This is his third pair. The first were just one solid piece that went up to mid-calf. The next pair were two pieces, one short solid pair that went just above his ankles (for all the time use) and those fitted into a taller solid pair that went to upper calf (for standing/walking). This pair is two pieces like the last wet but the larger part is hinged to help encourage walking. We are hopeful that this change will help Joe with his walking as his progress is obviously very slow. Joe also got a SPIO compression vest from his physical therapist. I had never heard of them until recently. From what I understand they are supposed to help via muscular support and sensory input. Here is what the SPIO website says about them: Stabilizing Pressure Input Orthosis (SPIO™) assists patients with stability and proprioceptive deficits. SPIO is a compression system designed to help children with special needs including cerebral palsy, autism, Down Syndrome, sensory processing disorders, and other neuro-muscular delays. While its still early, we have not seen a big difference since getting the compression vest. With every new thing we try a part of me hopes that this will be "the thing" that changes everything. But it never seems to be true.
Developmental Preschool seems to be going well. But we're kind of in the position of "no news is good news" right now. When Joe started dev-preschool in the spring of '10 we got notes home daily telling us what he did each day. Then last school year they said the notes took too long and they implemented a new system of communication via dry erase board in Joe's backpack and they would circle pictures of the activities that he did each day. This year we get a weekly newsletter telling us the theme for the week and we get notes telling us when he's out of diapers or had a grumpy day. Its been quite frustrating to have the communication go down every year. We get ongoing advice from several people who have more experience in the special needs world and we're discussing the potential of writing it into his IEP that they have to give us daily or weekly updates about what he is doing specifically. I'm not good at being hard nosed and I think that is what needs to happen here.
At home... well... Joe has been rather difficult to manage. He is into everything; opening cabinet doors, getting into trouble at every turn. When I sit down to nurse Christine, Joe throws a big fit and tries to pinch and grab at her and I. He is fascinated by Christine's hair clips and pulls her hair with a death grip. We often barricade off one part of the room or another to keep Joe from hurting Christine. He has found this high pitch screech that is enough to drive me mad. Nate notices when I get really frustrated and he has started saying "Joe just turned on the light in Mom's grumpy room". What? Where does he come up with stuff?
As always, please keep us in your prayers.

Mark 9:36-37 - "He took a little child and had him stand among them. Taking him in his arms, he said to them, 'Whoever welcomes one of these little children in my name welcomes me; and whoever welcomes me does not welcome me but the one who sent me.'" (NIV)

Joe's latest

Its been busy around here as we have been falling into our new school year routine. Every week Joe goes to developmental preschool four days a week where he gets PT, OT and speech therapy. Then he also has physical therapy and vision therapy outside of school weekly. Joe was switched from the morning to the afternoon preschool and that included a change in teachers - and the adjustment of learning to go without naps. We just had Joe's parent-teacher conference last week and they say he is doing well.
His teacher and therapists report:
- he is expressing more of an opinion about things - he is seeming more aware of his surroundings and what is going on around him, and better eye contact - he is doing a better job of purposefully releasing objects and toys - enjoys the sensory room, especially the slide and ball pit - doing better separating his legs when working on walking and returning to sitting when standing
Some things that are being worked on are:
- encouraging Joe with pushing buttons to activate toys, hit a drum, etc - continuing to work on getting Joe to return his drink to the table instead of allowing him to toss it
Joe has been receiving vision therapy and we have been seeing positive results from that. Again, we have noticed an increase in his eye contact. And while we are still working on getting him to keep his glasses on, he seems to see better with them on and is tolerating them a little better every day.
My sister-in-law has started doing cranio sacral therapy with Joe. Its still early so we cannot say for sure what kind of results we are having but we are cautiously hopeful that this therapy will help Joe.
Joe can be pretty moody lately. Sometimes it is because he doesn't like what we are having for dinner, others it is out of the blue. (The pix to the left is of Joe throwing a fit at Nate's football game. I think he was mad because his snack was gone.) Also, it seems like he has had a delay in his reaction to Christine. I expected him to get jealous when she was first born and I had to nurse her constantly, etc. But he was fine until recently. Christine does still nurse a few times a day and Joe gets very unhappy when I sit down with her. He will scream and pull on her and me. If at all possible I try to nurse at times when Joe is either gone or occupied elsewhere and won't notice. Its been very tiring.
He also is getting more and more curious about all that is around him at home. He loves getting into cabinets and doors. There is not a safe surface in the house anymore, he can reach the desk top and the table, the edge of the counters in the kitchen... I wish I could say that this has motivated me to keep the house cleaner but alas, I cannot. I just move piles around as he gets into them. Is that sad?
New skill: high 5's! Joe just learned to give high 5's over the weekend. Its so fun! Anything we can get him to do to genuinely interact is always good!
Anyway, that is about all for now I guess. Continued prayers are appreciated.

First day of first grade...

Last week we made an impromptu trip to the aquatic center near where my friend works. It was kind of a last summer fling before starting school. I'm kicking myself for not taking Nate to this place before! He liked hanging out in the lazy river. And to my surprise he loved the tube slide. I can't believe how big he is!

Last Monday we started our First Grade year of homeschooling with Nate. He was pretty excited to get started. He is such a smart boy.
This year we are using Heart of Dakota Little Hearts for His Glory. Some of the first grade stuff is a little on the easy side for him but it will pick up the pace shortly. And we'll be filling in with some additional reading.
Its good to get the year off to a good start. I'm glad that he is such an eager learner!