Nonverbal

Raising a nonverbal child is certainly a different experience than I had the first two times around, with my extremely verbal older children. There are moments of frustration for both of us. Pointing can only communicate so much and, while we are learning more signs every week, sometimes signs just don't help.

Even with the frustrations, Asher has become a genius at getting across things he really wants. He uses varied tones to tell us he needs help or to call us from another room or to let us know he's hungry or thirsty. He combines these tones with signs but even if I can't see him, I know what he's saying by the tone he's using. He's not afraid to climb and open and rummage to get his meaning across. The other day he successfully told me he wanted pretzels and hummus for a snack, by opening the refrigerator, pointing to the hummus, and pushing a chair to the counter so he could climb up and touch the pretzel container.

His understanding of language constantly impresses us. He is able to successfully follow a series of directions: Asher, please go to your room, get your cup and bring it to me. He also is able to understand when we tell him he needs to wait before something is able to happen. All very important skills!

I love seeing him grow and develop. It's like a brand new adventure because we just don't know what to expect with him and he shows us what he's capable of. Of course, hearing words come out of his mouth is always a thrill no matter how few and far between they are. This morning I awoke to hearing him softly and carefully, emphasizing each sound, saying, 'M-o-m, M-o-m, M-o-m'.

Pretty much, Asher helps us see the beauty and joy in all kinds of new experiences we were afraid of to begin with. I love this journey.

Vacation!

It's been a rather stressful, busy year for this family.  We've not really had a lot of time to spend together without any obligations, responsibilities and work pressing in.  So, it was with much joy that we realized Adam had a lot of vacation time saved up and our brains really need the break. 

So, we loaded down the car.

To kick things off, we headed north.  I was exited to show the family where my great-grandma homesteaded for many years, all by herself, in the great north woods, Superior National Forest.  

We ended up at Bear Head Lake State Park, an amazing place!

It was 90 some degrees and super humid when we pulled in to set up camp.  Notice the bright pink cheeks and wet hair, that's how hot it was.

It was so worth it.  Look at this beauty!

Halfway through the first night a thunderstorm rolled over.  The rain was pouring down, it was so loud and so refreshing!  I was praising God that our tents were actually waterproof, not just labelled as such.  Damek and Caedmon snoozed through the entire storm in one tent with Adam.  Asher, in another tent with me, woke up almost immediately, started crying because he thought I was putting him in the shower (which he hates) then crawled up on top of my chest and neck, and insisted on staying there through the entire storm, at least an hour.  After he realized it wasn't a shower, he giggled through much of the storm.  At moments the rain on the tent sounded like an audience clapping and he would join right in.  It was one of the best storm experiences ever.  I loved every minute.

The best part of the storm meant that the heat broke.  When we woke up in the morning it was cool and much drier.  We got in some kayaking, fishing and wading, as well as good naps and reading.

I was amazed and pleasantly surprised at how easily Asher would fall asleep at night and for naps.  I would lie next to him and read a book.  He would snuggle up with his special blankie next to me and within a few minutes fall peacefully asleep.  It was just awesome!

All in all, it was a fantastic way to kick off some well-earned vacation time.  We are plotting our next adventure.

Surgeries and Such

I haven't posted in a long time but that doesn't mean things have been quiet.  I'm not sure we'd know what to do with ourselves if we ever had some down time!  Ha!

A few months ago we decided, after meeting with Asher's urologist, that he needed a simple, out-patient surgical procedure to help fix some things that would hinder his independence as he gets older.  He went in for the short procedure and came out a sore but happy boy.  There was the normal stress of caring for the wound and making sure everything was healing correctly, administering meds and cuddling.  Not too hard, we're pretty old hands at that stuff by now.

A few weeks later we met with Caedmon's urologist, who happens to be the same urologist Asher has, and discussed a complicated surgery that Caedmon needed in order to be more independent as he gets older.  We decided to schedule the surgery sooner rather than later because we wanted him to be healed and happy when Kindergarten starts in the fall.  He spent five days in the hospital, four of those fasting.  Everything went according to plan and he is healing well and doing great.

I've been processing a lot in my head over the past few months.  It's never easy making the decision to send your child in to surgery.  Sometimes it is a litle easier, when things are very straight forward and obvious but other times it would be so much nicer to be able to wait until your child grows up and can make the decision for themselves.  With Caedmon this surgery is not reversible, it is a newer procedure, and medical advances seem to be happening so much faster, what if there is a better option when he grows up?  There is so much to consider, so much to take in and sometimes the decisions need to be made much faster than I would like to make them. 

 I find myself falling back more and more on the promise that God will work all things together for good so I can move on with confidence that we have done what is best for our children and rest in the hope that everything will come around right.  

Life is just beautiful and messy and never as easy as you imagine it will be when you are dreaming and planning your future.  That's what makes it so much fun!

Just What DOES He Know?

This has been a question that has been rattling around in my brain for a really long time, well two years at least.  What exactly does Asher understand?  Is he aware of what is happening around him?  How does he process information?  Can he connect all the dots?  Some of the dots?

Quite often, Asher will be staring off into the distance as I talk to him.  He seems completely oblivious, happy in a little dreamworld or something, when he will all of a sudden sign something I've just said.  He is obviously right there with me.  Sometimes he'll come out with signs I didn't even know he knew and have no idea where he picked them up at but when I check my signing resource he's spot on.

Last night our dog went missing.  We didn't realize she was gone until suppertime, by then she'd probably been out roaming for more than two hours.  The older kids and I talked about it and prayed for her at the supper table, Asher munched on his supper and smiled at all of us, no recognition that anything was amiss.  He went to bed just as easily as normal and had a great sleep through the night.

This morning Adam brought Asher into our bed to snuggle with us.  The first signs he said were 'puppy' and 'sad'.  We were blown away!  That little fellow is no sloucher!

It is beautiful to see how present he is!  It's also a little terrifying, to be honest.  What happens when he runs into someone who is unkind, rude, disrespectful?  It's so easy for us, as 'normally-functioning' people, to write off those who have mental disabilities as clueless, absent, ridiculous.  And if we see them in that way then teasing, bullying, abusing doesn't really matter because it doesn't really affect them anyway.  And we don't have to feel disturbed when meanness happens in front of us, we can go comfortably about our business.  But when we start to see how much they understand, how much is going on in the deeps of their mind, we cannot be so comfortable anymore.  We actually have to start caring because they care, we have to be upset because they are upset, we have to take a stand because they are trying to but they don't have the force to back it up.  We need to be that force.

So, how much does Asher know?  I have no idea.  But I'm pretty sure he will find ways of letting me know and surprising me all the time.

Happy Birthday, Asher Boy

Two years with our Asher!  It's hard to comprehend he has only been with us for such a short time.  It feels like he's always been a part of us, this little family.  This sweet one has captured our hearts.  I don't know when or how it happened but this toddler brings so much we didn't even know was missing until he came.  There is a peace and joy that seems to fill our home with him around.  I never understood what people were talking about when they told me what a blessing it would be to have a child with Down syndrome but I'm starting to get it.

Asher has come so far in just the last month.  He's started to stand up in the middle of the room, he's tried taking a few steps too!  His sign language has taken off.  He now uses around 30 signs on a regular basis and seems to learn new ones everyday.  We love being able to understand how his mind works and what he's thinking.  What an incredible gift!

Happy birthday, Asher!

A Great Christmas, A Bright New Year

I am continually so thankful for the communities I have become a part of.  It's awesome to be able to meet amazing people in the midst of struggles similar to your own.  It bonds you more than most other circumstances in life.

We have been struggling a bit financially with the responsibilities of having two boys with complicated special needs.  It's been difficult at times to fit all the puzzle pieces together and get all the resources to give our kids the best possible start to life.  Six months ago we were discussing what could be done and I had an internal nudge to ask my new on-line friends if there were any options we hadn't heard of. I heard back immediately from people in our state with options and ideas.  I called one of the ladies who had a very extensive knowledge of the process and procedures to get the ball rolling.  Her time and information were invaluable.

Right before Christmas our two youngest boys were accepted into a secondary insurance program that will cover any medical costs our primary insurance doesn't cover for very little out of our own pockets.  It also will cover mileage to the many medical appointments we got to far from home as well as some of the supplies we need that are above and beyond what a normally developing child would need.

In the process of getting them hooked up with that, Asher was accepted into a county program that assigns a social worker to him, who informed us that they still had grant money left over and, if we could get a list from his therapists, order and pay for the items before the end of the year the grant would cover the costs. So we have been able to get a number of items for Asher this Christmas that we would not have been able to afford on our own.

We are now waiting for all the paperwork to go through to see if I can be paid as a sort of medical assistant for the boys through a grant offered in our state.  It won't be a lot but it would help a lot with the month to month bills.

It's awesome how God answers prayers and has a hundred million ways to answer when we are feeling frustrated and at our wits end.  I am feeling really grateful starting this new year with bright hope and excitement to see what will happen next.