A New Part To The Journey

There are a lot of doors open and a lot of love given to well-behaved, slightly precocious, somewhat outgoing children. You know the ones. The ones who know when to speak and when to sit looking adorable. The ones who will interact with strangers in appropriate and cute ways. The ones who are helpful and caring from birth.

There is a smaller but strong community of love surrounding children who have obvious physical disabilities or markers of more common, better known diagnoses. Perhaps these people have a family member or friend or person they worked with at some point and when they see one of these children their hearts are touched. There are some who have a kind of romanticized idea of what raising a child in this category would be like and so they are attracted to them.

But what if your child is none of the above? What if your child is the one who blurts out the wrong things at the wrong time? What if your child is the one who talks constantly about things that interest no one but them? What if your child is the one who neighborhood children hide from and whisper about behind his back? What if your child is the one who looks perfectly normal but the more time someone spends with them the more they realize there is something not quite right and they slowly withdraw until they are gone all together? What if your child is the annoying one, the rejected one, the lonely one? What if your child is the one to draw out the innate cruelty in the children around him? What if THAT is your child?

What if that is my child?

Damek is a beautiful, intelligent, verbose, big-hearted, loving boy. He is very aware of how people feel toward him. He is very sensitive to the vibes people put off. He is very sensitive to stimulation. It has been heartbreaking to have him come to me and tell me that a certain person doesn't like him and know that it is true because I have watched interactions and seen for myself how people will recoil from him and not know what to say. I want to make it better and I can't.

A year ago we received a diagnosis for Damek, Non-Verbal Learning Disorder. We had known for quite some time that there was something a bit different about Damek, that he was very unaware of social norms, that he was anxious, that he struggled to be able to connect with his peers and preferred to be with adults or much younger children even though he wanted very much to be liked and accepted by everyone. We knew it wasn't ADHD, were pretty sure it wasn't high functioning autism. We hoped it was just a high IQ, being gifted can mimic many of the same symptoms as these other diagnoses. We dragged our feet at getting him evaluated. For me, the thought of having all three of my kids labeled as different, less than, not average felt like too much. But eventually we knew we needed to figure out what was going on so we could give him the tools to succeed.

So we scheduled him for a multi-day evaluation. There was an IQ test, computer tests, object tests, observation, questionaires. And when it was all over we knew that Damek was extremely smart, 97th percentile on the IQ test, and that he was struggling with a learning disorder. When the psychologist sat down with us and explained what the learning disorder was and how it manifests itself there was a certain relief. 'Yes! That is Damek! That is absolutely accurate!' And there was a little grief. 'Yes, That is Damek. What does this mean?!'

It has been a journey just to come to an acceptance. I have a stack of books on my nightstand pertaining to raising a child with Non-Verbal Learning Disorder and I cannot get past the first few chapters. It all still seems so overwhelming. I know we will find joy in this journey as we have with the journeys we are on with our other two boys but it is hard to get started.

My prayer right now is that in putting this out there it would make people stop a moment and think before they judge a child or his parents when they see a child acting outside of the norm. That maybe it will help someone teach their child a bit of empathy and compassion and help them see that sometimes people are born with some extra hurdles they have to jump over. Don't we all deal with difficulties? How can we help each other through them rather than making them harder by hard hearts and cruel words?

I'm just a mama, crying softly as she types this, hoping for a little more love, a little more softness in the world.

Dreaming

Last night I had a really vivid dream. I was sitting in a coffee shop or something similar, waiting for an amateur night to start. It was a special night for people with spina bifida to get up and share their short stories, poetry, music, whatever. The first person to stand up was a young lady who started to read us a story of her life. One of the things she mentioned in passing as she read her story was that she still lived at home with her parents. From that point on I couldn't hear anything else. Her voice was drowned out by all the people around me commenting:

'Did she just say she lives with her parents still?!'
'She shouldn't still be living at home!'
'She should be moving out, living her life!'
'What is she thinking?!'

In the dream I was looking around at all the people talking around me, no one listening anymore to the girl, all lost in their own judgments on what she said.

Then I woke up.

I spent a long time pondering what the dream could mean. One of the strongest things that came out in my own mind was that as soon as she had said one seemingly innocent comment, everyone stopped listening. No one was listening. People were so caught up in their own thoughts and critiques about one minor point that no one was listening.

How often do we do that? Do I do that? One thing gets us up on our soapbox and away from people, and we start talking and stop listening.

Her point had nothing to do with living with her parents, it was a side-note, a simple nothing, but people grasped it and would not put it down again. In their minds that was the whole point and that one thing summed up who the girl was and what her worth was and nothing else mattered.

I see this quite a bit in social media. So many of us get ahold of our pet topics of contention and we cannot let it go and we blow up even the simplest, smallest statement as a personal attack.

And then again, we love to assign negative intent on everyone and everything that we don't take the time to understand. Considering my dream, I thought about the number of times people have said rude or nasty things to someone about having a parking permit for special needs parking spaces or made judgment calls about someone based on outward appearance without ever taking the time to understand any part of the person's circumstances or life.

It is so important to gain understanding, to clarify, to LISTEN. Take some time to really listen today. We may just be amazed at how our stance may change just by opening up our ears a little more and our mouths a little less.

A Day In The Life- What Living With Down Syndrome Looks Like

The joy that is radiating off Asher's face in this picture is the perfect illustration of what it is like to live with a child who has Down syndrome on a daily basis. Yes, he absolutely has bad days, yes, he gets frustrated and angry sometimes, yes, he is human but he exudes a joy that spreads to every person he comes in contact with. From the people in the grocery store who are greeted in every aisle with a wave and a 'hello' to the children in the waiting room at the therapy office who are blown a kiss as they head on their way to an entire church who is offered his hand to shake as they exit the sanctuary to his family smothered in hugs and kisses it is impossible to spend five minutes with him and not feel uplifted.

There is so much more to life than financial gain or academic success. Asher teaches all of us that a life can enrich so many just by existing, just by being a part of the world around them. Our society can have such a narrow view of what is important or what matters, expand it a bit and get to really see and know those who have much more to offer than the puny list of import we've been taught.

#lifewithds

Manuscripts And Emotion

I haven't updated the blog in a very long time. This is mostly because I have been very busy rewriting my blog entries for an upcoming book. I have agreed to a deal to sign over my blog rights in order to get the material published as a parenting book for those caring for children with special needs.

I will still update the blog, it won't change the material and there won't be any other writers joining in, it will still be our family update center, just more people may be checking in on us. In the meantime, please think of me and lift me up in prayer as I struggle through some of the heavier memories and stories and try to put them on paper in a meaningful and useful way.

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!