We Get it Now!

It seems appropriate that on this first day of Fall, I take a moment to think back on this Summer.  For us, it was the Summer of TRANSFORMATION!

After Nate was born we received many phone calls, emails, notes and random-passerby-mentions to the effect that our son would "bring us so much joy" and "be such a blessing".  In those early months we wanted to tell them to keep their happy thoughts to themselves.  When Nate passed 6 months, then 12 months and was closely approaching 18 months, I started to wonder when this joy was going to come.  I wasn't feeling it.  I posted about it a while back and got several responses to be patient, it would come.

AND IT HAS!

Both Bob and I have experienced a major transformation over the last couple of months.  And yes, I can say it, loud and clear, "NATE IS AN ABSOLUTE JOY AND BLESSING"!  There, I said it!

Nearly everywhere we go, Nate just spreads his joyful spirit around.  I often have people ask me if he's always "this happy" and I tell them, yes, pretty much, about 95% of the time.  There is a pure love and joy that seeps out of every last ounce of his 25 pound sack-o-potatoes body.  It's really hard to be down for long when I'm around him and I happily tell people to come spend time with us anytime they need a pick-me-up.  Really, I think it should be called "Up Syndrome".  Why did the darn guy who discovered the triple 21st chromosome have to be Mr. Down????

No, I'm not saying having a child with special needs is all roses.  But, honestly, if I had to choose a disability, I'd choose to have a child with Down Syndrome.  He will eventually be able to do everything.  And in the meantime, he is lighting up the world one wide-mouthed smile at a time.

God, thank you for answering our prayers with exactly what you thought we needed....Nate.

-Danielle

More Music, Please!

"Stupid"

I've had my first dose of hurtful language toward Nate....from his brother!

Somehow, Cody picked up the word, "stupid".  I think the boys at school have been throwing it around while they play outside.  They likely don't know the strength of the word.

A few nights ago, we were at our local Down Syndrome organization's annual event at a small amusement park.  While we were waiting for a ride, Cody very sweetly whispered in the ear of my friend, Megan, "Ben's stupid.".  She looked at me concerned about what Cody had just said of her 4 year old son with DS.  I couldn't believe he'd said that and talked with him about how hurtful that word can be and that I would like him to use nice words.  Then, last night, as we were getting into the car, he said, "Nate's stupid.".  While the comment about Ben was mostly embarrassing, the comment about Nate hurt.  It hurt deeply.  Not only because Cody had said it, but because I knew this was just the beginning.  I know Cody will grow to understand, and likely be an advocate for, Nate, but what about all of the other children out there?

When I dropped Cody off at preschool this morning, I had a quick chat with his wonderful teacher, Meg.  She agreed to do a circle talk about how words can be hurtful.  I'm sure it won't be the last time we collaborate about something like this. 

So, whoever came up with the saying, "Sticks and stones may break my bones, but words will never hurt me."?  That's STUPID!

-Danielle

Wordless Wednesday

I'm sorry it has been so long!  I hope to write very soon, but in the meantime, thought I'd show you a few pictures Cody took over the weekend!  Pretty good for an almost-4-year-old!

My Champ!

Early on in our relationship, I began calling Bob "Champ".  I honestly can't remember how it started, but with each passing year, Champ grows more and more into his name.

And Father's Day is a great reminder of just what a Champ he is.  Bob is an amazing Father!  I always knew he'd be good, but he has far exceeded my expectations.  He pours all of himself into our boys.  No matter what kind of day he's had, he comes home from work and dives right in.  He is a "get-down-in-their-world" kind of dad.  He'll play chase for what seems to be hours.  I often try to play something with Cody and he'll quickly say, "No, Mama, that's Daddy's special game".  I love it.  I never feel an ounce of jealousy when I hear those comments from Cody or see Nate's face light up whenever Bob comes in the room.  I adore him and so do our boys.

Nate's first REAL bath

Wordless Wednesday

Making Progress

Progress is a funny thing.  People ask me all the time how Nate is doing.  I'm not really sure how to answer that.  Well, he's 16 months, but looks and acts like an 8 month old.  How is that?  He's about the sweetest little guy around, but progress is slow, really slow.  Looking at the range of timelines for milestones does not help me anymore.  Nate is on the slower end of the range, so what used to give me comfort now causes concern.

I asked our Speech Therapist if there is any correlation between a slow learning curve now and ultimate function later in life.  She danced around for a minute, but then said that there are some who believe that a slower start means lower function.

Hmmm, what do I do with that?  Do I dig in and push, push, push?  Yes, I have to.

As a Personal Trainer, I am used to pushing people.  But, I've never had anyone come to me and say, "I'm going to live with you for the next 20 or so years and want you to do everything you can for me to be the best I can".  That is a lot of responsibility!

I'm not a runner, but I don't avoid it altogether.  I don't hate it, I just don't crave it like some I know.  I think it's ridiculous that Marathons have been introduced to the masses.  (Did you know the first Marathoner died at the end?)  I have seen way too many people burn out or have long term injuries from pushing their bodies to run marathons.  I'm more of a short distance girl.  5k, 10k, even a half marathon.  So, looking at this long term commitment to Nate's care feels really big!

Okay, so that's what I've been feeling lately.  Haven't wanted to write about it because I want to be past this place.  I adore and love Nate so deeply, but there is still a part of me that wishes I could blink and we'd be back to the day of his birth and I'd see a different baby....so, I beat myself up.  I've had to process this lately because I have been eating out of control and know without a doubt that when I eat like this it's because there is something I don't want to have to deal with...

So, now I'm writing.  And dealing...

And actually, we've had some really big progress over the last month.  When Nate turned 15 months and still wasn't sitting for longer than 10 minutes on his own, I shared my frustration with our PT.  She looked around our family room for ideas of how to help him sit and came up with this setup:

It's a balance disc behind a table the great people at Early Intervention made.  So, sitting on this unstable surface gave Nate a constant reminder to work to stay upright.  We put him on the front 1/3 of the disc so that if he started to lean back, the pressure of the air at the back would give him a nudge to sit back up.  The day after we came up with this setup, Nate sat for 1.5 HOURS STRAIGHT!!!

So, a couple of days later, we were able to take him outside and he sat the entire time while we planted our garden!

We used this approach for about 10 days and then took him off the disc.  Now he can sit and play for a really long time!!!  He even spins around on his tush to get different toys.

And as of yesterday, Nate is drinking from a straw!!!!  This is so exciting for us!  It literally just happened.  He sucked down an entire honey bear of apple juice with his tongue pulled in!!!  

I'm really hoping that he was just stuck in a place of slower development because he hadn't mastered his gross motor skill of sitting.  Maybe now he will flourish and just surprise us with all sorts of new tricks!

Here's a video of us playing last week - he was in such a great mood!

-Danielle

Two New Friends

Nate has made two new friends this week....

1)  Talking Elmo, who is really helping him build his endurance while sitting.

2)  His reflection, who he really loves to kiss!

 

-Danielle

Clapping

Nate has been clapping for a while now, but I hadn't been able to capture it - finally did today - so stinkin' cute!

-Danielle

Picky Eater!

With all of this extra feeding lately, I am learning that I have a son with an extreme sweet tooth!  Nate will not eat ANYTHING savory!  I thought maybe it was just because he's been eating jarred baby food and that can tend to be a little bland, but no, I made some great Sweet Potato/Apple/Chicken puree and he didn't go for that either.  Seriously, he gets really mad at me and just spits it right out!  Then I go right to applesauce, bananas - anything sweet or tangy and he loves it.

I've also tried spicing things up to add flavor, but still, he hates it!

Any ideas???

-Danielle

Oral Motor Therapy

It has been such a long time since I have written.  I apologize to those of you who depend on our blog to know how our little guy is doing.  I hope to pick it back up again.

We just returned from a much anticipated trip to Arizona.  At the National Down syndrome conference in Sacramento last summer, I attended an all day workshop with a Tuscon-based Speech and Language Pathologist, Sara Rosenfeld Johnson.  She is doing incredible work for children with DS, and her approach really made a lot of sense to me.  Since Sara is no longer seeing children one-on-one due to her speaking schedule, she referred me to Jenn Buck of Jabbermouths.

Children with Down syndrome are challenged by low muscle tone.  This, along with a smaller mouth cavity, causes a noticeable tongue protrusion.  Nate is often photographed with his tongue hanging out.  So, as a Personal Trainer, approaching Nate's feeding and speech issues from a muscular perspective really makes sense.  There are 14 muscles in the tongue and 82 around the mouth that all need to be "trained" and strengthened to work in harmony.

So, we met with Jenn 3 times over the week we were there and she gave us a program to work on with Nate for the next 6-8 months.  This includes a "warm-up" time to prep Nate's mouth for the work, and a variety of tools and methods to help strengthen different parts of his jaw, tongue and mouth.  The main thing we worked on was giving Nate added support of the jaw to allow his tongue to do what we were asking it to do.

(warming up the mouth)

We began using the honey bear to teach Nate how to drink from a straw, a modified cup to help him handle food that is place at the end of his tongue and employed a variety of methods with the shallow-cupped spoon.  Nate did great and I am already seeing progress with tongue retraction and lip closure.

(The Honey Bear with berry applesauce inside)

(Poor little guy was too exhausted to sit up to eat some banana!)

We will continue to work with our Early Intervention Speech Therapist, but will also stay in touch with Jenn and likely try to visit her 2x/yr.

We're feeling encouraged and proud of our sweet Nate Nate.

-Danielle

Nate's Hats!

Nate sports the Hanna Anderson Pilot Caps every day.  Not because I think they are all that cute...honestly I much prefer his little curls on the top of his head...but because he HAS TO WEAR THEM.  Our Audiologist recommended them to hold on his hearing aids (he has them in both ears) and prevent him from pulling them off.   Fortunately, they are made of lightweight organic cotton, so he doesn't mind wearing them.

If you see pictures of him without his hat, it's likely for one of these reasons:

*I just want to have a cute picture of him with his little curls sticking up

*He is grumpy and the only thing that will make him happy is to decrease the stimulation and take off his hearing aids

*All of his hats are in the laundry

*He has outgrown the ear molds and we're waiting for new ones

*I just need a day off from dealing with them...

http://www.hannaandersson.com/style.asp?from=SC|1|1|156|47|10||&simg=22733_W14

-Danielle

Captured

This moment was captured by a new friend at a play date today - simply amazing!

A Deep Respect for our Sweet Nate

As of  yesterday, at 13 months, our sweet Nate is sitting!

It has been a long journey to get to this point.  He is a very wiggly guy, so sitting in one spot just has not been an interest of his, but yesterday, just like that, he was sitting.

And today, the overwhelming feeling I've had for Nate is RESPECT.  Yes, I'm full of pride and happy that he has a new view of life, but the true feeling I'm bursting with is respect.  I am just so impressed with how hard he has worked to get this far.  He barely complains and just works as hard as anyone around him will make him.  He whines a bit when he gets tired, but, hey, I'm a Personal Trainer and most of the people I've worked with would have quit long before Nate.

(don't you just want to kiss that face?!)

I'm learning so much from him and am seeing very clearly one of the reasons God placed him in our family.  Nate is here to remind us to strive for our goals and to appreciate the smaller achievements along the way.  

Nate, thank you.  I love you more than I ever thought I could.

-Danielle

First Time on the Swing

Nate is stable enough now that we ventured out this week to the swings.

He LOVED it!  He smiled and kicked his legs.

Better yet, Cody LOVED it!  He quickly figured out how to push Nate without getting bumped in the head and took on his big brother role proudly again!

I just adore these boys!

-Danielle

Please help Sofia!

This is REALLY important to me....

If you have even just $10 to spare, please read the following post from my friend, Jen.  I affectionately call her "blogger Jen" because she is the one who I was pointed to online (thanks Jen Ferrara) after I learned that Nate had Down syndrome.  Her words were like bandaids straight to my heart and she was there for me in a huge way, right away!

Now, she is trying to adopt a little girl with Down syndrome, bringing her out of terrible conditions in Eastern Europe.  It would mean so much to me if you would help Jen do this since she has helped our family immensely!

Here's her post:

http://savingsofia.blogspot.com/

-Danielle

Stuck

Nate is doing quite a bit of moving - backward!  

He hasn't quite figured out how to move forward, so it can get him into some precarious positions.

 

  

 Fortunately, Cody has become quite the helpful big brother and is able to pull him back out to safety!

It's been really wonderful lately to see Cody become protective and watchful of his little brother.  I'm looking forward to watching their relationship grow.

-Danielle

Thank You to My "Blogging Friends"

A few days ago I expressed my concern that the blogs that have been such an inspiration and support were now becoming a challenge for me.  That by reading other babies' accomplishments, I was questioning if I was doing enough for Nate.

Well, I have received quite a few responses on this and feel very encouraged.  Thank you to all of my blogging friends out there - it's amazing to me that I have not met most of you, but feel this deep sense of connection and support through your words.

I am blessed to know you and thank you - I look forward to many years on this journey together.

-Danielle

Comparisons

Today I read an entry from a blog I read regularly.  This mom's 8 month old hit a huge milestone and is now sitting on his own.  Sure, I'm happy for them.  But this threw me into a tailspin of comparisons and concern.  Nate is almost 13 months and still doesn't seem anywhere near being able to sit on his own.  Our PT (who I think is amazing and doing a great job) keeps assuring me it's because he is such a squirmy guy.  He really has no interest in staying in one spot.  He's a roller and he's doing some rocking on hands and knees, but he really has to be entertained to sit up (while being supported) for any length of time.  He just shoots his hips forward and slides right out of sitting position.

So, this is tough for me.  The source of the most help and kinship comes from the blogs of other parents who have children with DS.  But now that Nate seems to be falling behind even the DS curve, I don't know where to go.  

Am I doing something wrong?  Not doing enough?  Or am I just being impatient and this other child sitting up at 8 months is way ahead of schedule?

I don't know, but I'm really in a bummer of a mood now.

-Danielle

This time last year: #3

IS ANYONE READING THESE?

Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year.  I didn't start blogging until March, so these are writings that haven't been on the blog. 

2/5/09 An email I sent to friends about 5 weeks after Nate's birth.

Hi friends,
I've really been wanting to write to give you an update. It seems I barely have a free moment in my day and when I do have time I just want to read or chill. I know you are all praying for us and can feel it!

First of all, a bit of an announcement. We have changed Braylon's name. His name is now Nathan Graham Paskins. This was a tough decision for us, but there are 2 very good reasons. First, if he has challenges with speech, he may not be able to pronounce Braylon clearly and since many have not heard the name, they may end up coming up with something else. You can imagine the frustration this could cause. The second, and just as important, reason is that we feel we need a name with meaning. Nathan means, "Gift from God". We want our son to know that is how we view him and we also need to be reminded in the challenging times ahead that he is our Gift. Already, with just a day of calling him Nathan, I have a deeper sense of connection with him.

It's hard to believe 5 weeks have passed since our lives changed dramatically. We are doing pretty well, but also recognize this is a lifelong journey we are on. Feelings will ebb and flow. I think we are through the shock and now just feel like we're going through the normal adjustment of having 2 kids. Nathan is very easy still - he sleeps, eats and poops and is extremely cuddly. I am only getting up once in the night, so I'm very thankful for that. I am still pumping and bottle feeding and may just need to keep that up (I've mastered the skill of pumping and doing just about anything - even driving).

Cody is presenting more of a problem right now. He is very 2 and a half! He knows how to push all of my buttons and is showing a lot of aggression. He growls and hits just about anyone. I'm hoping he is just working through the adjustment of having a brother and will return to the sweet boy I knew before he turned 2. His mood can go from great to terrible so quickly and I'm losing my temper with him a lot. I'm trying to get back to reading "Love and Logic", but have mostly been reading DS books lately.

Our support system continues to be amazing. Thank you for all of your devotions/words of inspiration you've been sending me. It really helps me to know I'll have those to look forward to each day. Please know that even though I don't respond directly, I am reading and appreciating them. Our family and other friends have also been great. Mom has jumped in and is really helping. Bob's mom visited a couple of weeks ago and my Dad was here today. We are receiving meals 2x/wk and people here (many from Baby Boot Camp) are trying to do that for many months to come. We have begun to connect with the Downs community and have met up with the family from our church who has a 3 yr old with DS - we really like them and are glad to have them around. Unfortunately, they are moving to a different county to get better services for their son.

That brings me to another subject. We have begun to learn that the services available for Nathan are not nearly what we'd thought. For example, when my cousin (who has DS and is now 12) was a baby, they sent therapists to her house 2x/wk. Now we will get 1 or 2x/mo. So, we are going to need to get a lot of private help. Our insurance will cover some, but not all, so it will definitely be a financial challenge to provide him the help he needs. For example, our insurance will cover 10 speech therapy visits/yr, but we will need many more than that. Also, they don't cover speech therapy for developement of oral motor skills, which is something we will need. We know God will provide the resources we need when we need them and are trying not to get too far ahead of ourselves.

I have found many great resources, but probably the most helpful at this point has been reading the blog a friend sent me.  If you have time to take a look, it's http://trisacharm.blogspot.com/
If you don't have time to read much, it would be great if you could at least read this: http://trisacharm.blogspot.com/2008/05/welcome-to-holland.html

Thanks again for all of your prayers and encouragment.  I hope that we will all grow and learn as Nathan does.

Love and hugs,
Danielle

This time last year: #2

 Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year.  I didn't start blogging until March, so these are writings that haven't been on the blog.  NOTE:  Just a reminder that Nate's original name was Braylon.  We decided to change it after a month or so.

1/7/09 An email I sent to friends the day we got confirmation of Nate's diagnosis.

Dear friends,
I write this with tears and great sorrow to report that our dear baby Braylon has been confirmed with Down syndrome.  I am overwhelmed with emotion.  Bob, Braylon and I are home now while Cody is with my mom for the day/night.  Our pastor is coming over in an hour to pray with us.

Our next step is to get an ultrasound of Bray's heart as 50% of Down syndrome babies have heart issues.  Our Dr doesn't think that is the case with him, but we need to check anyway.  I will also be calling the local support service that will come over and assess Braylon and set up a program for him.

I have never been faced with something so powerful - something that will be part of our lives forever - it's very overwhelming and I'm working on taking things one hour/one day at a time.  I know God has great things in store for us - that he will strengthen us to handle this challenge.  It's baffling to me now to think that just last week I was concerned about just being able to take care of two healthy boys - I can only do this with God's strength!

Thank you for all of your prayers and support.  

Humbly,
Danielle

This time last year: #1

Since Nate just turned one, I want to take some time this month to share some of the emails I sent this time last year.  I didn't start blogging until March, so these are writings that haven't been on the blog.  NOTE:  Just a reminder that Nate's original name was Braylon.  We decided to change it after a month or so.

1/5/09 Part of an email I sent to friends 4 days after Nate's birth

I'd like to start by sharing some of the birthing story with you as I see God's hand in it so deeply and know that he orchestrated a natural birth for me for a reason.  After having contractions for 2 days, when I got to the hospital on Thursday morning, I was already at 7cm.  After they checked me, they let me go get in the jacuzzi.  I spent 2.5 hrs laboring in there.  I felt very comfortable and relaxed and would actually just sit back and chill and talk between each contraction.  After about 2 hrs, we decided it was time for Bob to take a break and my mom took his place in helping me.  Bob went to get something to eat downstairs, but then my water broke.   I immediately felt I needed to push, so they rushed me down the hall by wheelchair and got me back to the room.  Mom called Bob and he got back to me as fast as he could.  At this point I started to panic, but then the Dr (who God appointed to be on call that day and was not my Dr) got close to my ear, squeezed my hand and said, "Danielle, you can do this.  You can do all things through Christ who strengthens you".  Wow, what a blessing.  I pushed for about 40 minutes.  Braylon was placed directly on me and moments after holding him, I looked up and asked anyone listening, "Does he look like he has Down syndrome?".  I looked at my moms face and knew she was thinking the same thing.  They called the Pediatrician to take a look at him.  While many things are in his favor (strong heart, strong lungs, able to cry and nurse), there are also several things that caused us to wonder (squinty/slanted eyes, low muscle tone, extra skin at the back of his neck).  The Dr would not deny or confirm our concern, but said he could see what we were seeing and suggested we get a blood test done to figure it out (we never did the screening during pregnancy because we knew we wouldn't do anything about it and it could cause a stressful pregnancy - all 3 of my ultrasounds I had never showed any concern). 

At this point, the wind was completely taken out of our sails.  I couldn’t believe I could have just gone through this amazing life-changing experience of natural labor and now may be raising a child with special needs.  But I know now that God made that experience part of the journey to remind me in a strong way that I am a strong, capable woman.  I have grown way too reliant on others over the past few years and know I need to rely on God’s strength now and allow him to work through and in me.