God Allows Sippy Cups in Heaven

"Disabled."

The term can seem like Mt. Everest to a mother of a child with special needs.  It also puts the focus on performance.  If you can get your child to show off their abilities in public they wouldn't be rendered "disabled" anymore.  So we strive to make them better at walking, talking, eating--anything to be "normal"; to fit in.  But can you erase a "disability" by acquiring skills?  Is that really important?

This past week my pastor gave a sermon on how performance-driven our society is and how value is attributed to those who perform well.  But the truth of the matter is that this is not how God operates in His love for us (hallelujah) nor how we should choose to operate in our love with each other.  Value should never be attributed to someone's abilities to perform--because it will truly never be enough.

At my previous job, we were told not just to work with the "fun" kids--the kids who are cute and playful, who we are naturally drawn to.  Because all kids of all abilities need love and attention, not just the "fun" ones.

An article in our local Down syndrome group's newsletter cautioned parents about bragging about all the wonderful things their child can do because it is important to be sensitive to those parents who's child may be lower functioning. The truth is that all children with Down syndrome are special, not just the one's who master many things.

Down syndrome is considered a disability.  My son is categorized as "disabled" despite the fact that he has many abilities.  And just because my son can walk and use a spoon doesn't make his diagnosis go away.  No matter what skills he will acquire in his lifetime, he will always have Down syndrome.  It cannot be erased and nor do I care for it to be so.  My love for him isn't based on what he can and cannot do.

Skills are great.  They make life easier to navigate and helps our child become a more independent and confident little person.  We love when Marty learns something new.  We're excited as we cheer him on as if he has just won an Olympic medal.  We foster an environment for learning, giving him plenty of opportunities to try new things but every milestone he accomplishes is in his own time and way.  We cannot speed up his learning process by force (in fact, he regresses if we push to hard for something).  It doesn't work.  We've learned that he learns through steady plodding, repetition, trial and error.  He can sense an adult's agenda when it interrupts the fun play-learning he's having and responds with his version of "no thanks."  So we use unconventional ways to teach him and while it may take some time for him to have that "ah-ha" moment where things click in his mind, he learns--and has fun while doing it.  On many levels he is just a typical kid but we also take an altered approach when it comes to teaching him things.  We respect his pace and meet him where he is at, cheer when he does accomplish a difficult task and always remember to say "thank you" for his help.  And what child--typical or not--wouldn't benefit from a learning experience like that?

Yet our goal isn't to get him to perform many skills to be "normal."  The fact is he's not "normal."  He's extraordinary.  So our goal isn't normalcy, but raising an extraordinary man of integrity who loves people and loves God.  We hope he learns who Jesus is by the way that we treat him, in how we love and teach him and then turn and show that love to the world himself.  Marty cannot say his ABC's, but he is a good friend.  He doesn't know how to jump, but he has incredible discernment on giving the best hugs at the right moment.  He drinks from a sippy cup (like most 2 1/2 year-olds anyway) and he loves his family.  Those are things that matter most us and what I believe matters most to God.

So if Marty never learns to drink from a cup or a straw?  Who cares.  Our focus is on more eternal things, and God allows sippy cups in heaven.

Mom Knows Best

There are articles in parenting magazines and on online forums entitled "What Every Teacher Would Like Parents to Know."  The article gives some insights from teachers about information they believe will help the parent-teacher and teacher-child dynamic, making all parties involved happy.

Parent/Teacher roles can sometimes get confused with regards to the student.  For instance, a teacher can assume they know the student better than their parent.  Parents might be written off as seeing their child through rose-colored glasses or simply being out-of-touch with their child.

Here is what every good parent would like their child's teacher to know: we know what's best for our kids.  We may not have degrees that say so, but it's true.  It's also common sense.  A teacher who spends only a small portion of time with the child is not qualified to instruct the parent on what is best for that child.  Sure, teachers can offer insights and ideas, but they never trump the parents insights or ideas because instinctively a good parent has their child's best interest in mind.

And just because there is a degree that goes along with a title does not make a teacher qualified in all aspects of that profession. There are qualities in a good teacher that they don't give degrees for.  And if those qualities are lacking you can be assured that my child will not be in your care.  I run this interview process--and mom knows best.

Pasta Wheels: Ingredient for Success

Making Marty feel successful will determine his future attempts of working on a skill.  We are working on using a fork lately. For a child with low tone, stabbing into anything with strong enough force so that it stays in place long enough to make it to his mouth is a challenge.

Marty currently uses scooping motions with his fork which, doesn't exactly work out well with most fork-foods.  But making him feel successful with a fork in hand is the key--not the forking skill itself.  That will develop over time.  I am more concerned about him being comfortable using a utensil other than a spoon, being OK with a pronged apparatus in his mouth verses a smooth, round one. So what do we eat successfully with a fork then? I give you the pasta wheel!

Design makes it easy to catch on a fork--and it's fun!

Sheer Joy

In my mind, I go back and forth between two places.  In one place, I wear the hat, badge, honor and authoritative weight of a protective mother.  In that place, I am an advocate and keenly aware of any possible threats that may come my son's way.  Because I am his mouthpiece for this season of life, I am careful to tread lightly here and there, but not in a tip-toe manner, because I am also patrolling the banks of this place for incoming ships.  I am ready to fire if danger creeps near as I am on high alert for such things.  Proudly I keep my daily post protecting my greatest treasure, guarding this most precious gift which has been entrusted to me.   

Yet there is another place I go in my mind where I am dancing in the highest daisy fields hand in hand with my son.  I want to sing his love song to the world, to display his perceived ailment in shining armor.  On my heart I proudly wear his badge of courage, strength and love.  He is my joy and this joy is contagious.  Why shouldn't I share this powerful, addictive love with the world?  Perhaps they may be inspired to open their hearts as I have. 

Today in my prayers of thanksgiving overflowing for the greatest gift the Lord has ever given to me, I thanked Him for many things.  For sculpting my heart in the most miraculous way, for His faithfulness, yes!--even for Down syndrome!  How much more has my faith increased because my son was born with Down syndrome! 

I have begun to wonder why I am holding Marty's story back at all.   

I chose not to share his diagnosis with everyone we meet.  I still think this is wise; not everyone is open or welcoming of such precious information (and in my opinion, if that be the case, they are not worthy of such either; I shouldn't cast my pearls before swine).  I want Marty to also have the opportunity to make a smashing first impression as well--just the opportunity that everyone else in the world should have without restrictions or limitations placed on them from preconceived ideas about Down syndrome.  But the more people I decide to tell his story to, the more "touched" responses follow.  When I think about all the great blessings that have been heaped upon me, the more I want to share those blessings.  It has become the fire shut-up in my bones that Elijah speaks about in the Old Testament.  There is a sheer joy that arises in my heart when I begin to think about all the Lord has done on my behalf when He decided to bless me with a son who has Down syndrome. 

Perhaps it is time to share this joy with the world?~*

Medical Attention

Have you ever been irritated a pediatric nurse with a sweet tone of voice and honest questions and not even realized it?  At least if I'm going to be in a fight, let me know about it.  Feeling caught off-guard by rudeness manifested out of nowhere is just wrong.  I need time to process what's coming my way--at least offer me that courtesy. 

It was my right to be upset, not hers--yet I wasn't.  She wasn't bounced back and forth from department A to department B, each time re-explaining to the forgetful receptionist who I was and what I wanted.  "Hold please...Hold please...Let me get the nurse again."  Maybe if I'm nice they'll humor me. 

So I thought.  

Not being on her end of the receiver, I couldn't see what other pressing assignments she had to attend to, so I couldn't imagine her frustration or where it truly came from.  But I can tell you she would've saved some time running around if she actually listened to my questions before trying to find the wrong answers.  Forgetting the reason why I even called, I entertained her for the few moments I wasn't on hold.  "I don't want to pay for this anti-body boost my son doesn't have to have at $100 a pop.  He stays at home with me and goes to group once a week where they turn you away if you are feeling sick."  "Well you should do it if it's for the well-being of your child."  Wait--did I catch that right?  Are we now insinuating that I don't have my child's well-being in mind when it comes down to money?  Now my tone has changed.

Answers--to questions I never even asked which got me way off-track and adjusted my attitude for the morning.  Those answers she inevitably thought they should suffice for now.  When I didn't say, "Thank you for all your hard work, have a nice day," it was almost as if she were looking at me from across the room asking What's she still doing here?  Finally I regained consciousness after the whirlwind of unnecessary conversation and cut to the chase.  There were plenty of other people I talked to moments prior who would gladly help me.  But she decided she was up to the task after all.

Who knew it could be that easy to schedule an appointment?

Before we hung up, she had the nerve to tell me "Things will get better," as if the agitation was all on me; as if all the questions were coming out of some pit of despair over my son rather than simply wanting simple answers to my simple questions.  What she didn't realize is that I wasn't irritated at all until she began to get short with me. 

Anyway, I hope the next time I call I won't have to speak to the whole (actually small) office before I get any real medical attention.~*

Meet Meat

Turkey was (was) a hit, chicken didn't go over too well, and beef had the worst reaction of them all--a side order of tantrum topped with spitting.  We both needed baths after that encounter. 

Turkey alone, as I mentioned, was a hit.  It even smelled like turkey and was complemented well with some sweet potato puree.  But he wouldn't take it well with his grandma.  I told her to sing and sing she did.  Made-up melodies trailed off as she ushered in broadway classics, like West Side Story.  I didn't mind until she sang to him about the Jets; the whole "first cigarette to your last dyin' day" bit isn't exactly G-rated.  Anyway, the songs didn't inspire an "open wide," but it did drown out some of the protest at the other end of the spoon. 

Chicken, so I'm told, is gritty.  It sort of smelled like chicken, or I can see the likeness.  His face was priceless--simple snacking to immediate disgust as soon as his toothless gums began to mash it around.  Luckily he chose to swallow that entree instead of rejecting it toward his mama.

Beef--oh beef.  You smell like cat food and I don't blame my son for not liking you.  Green beans are enough to choke down, but dash it all I had to go and mix those two blasted ingredients and make a concoction so horrid it spewed in volcano-like fashion from a red hot mad little face into the air.  It was a peach co-vert op that saved the day. 

Onto the next meat frontier: egg yolk.  May you provide a better experience than your predecessors.~*

Learning Like a Mother

"You're not a bad mother because you don't know the solution."  Words of wisdom from my mom just a few minutes ago on a humbling phone call.

I was so proud of my son's bedtime ritual which was a labor of love.  Reading books at 6:45pm followed by prayers and perhaps a lullaby.  Lights out at 7:00pm and my little dreamer drifted to sleep. 

Since his scare this past weekend--another ball of wax not yet blogged about, but it involved my son sleeping facedown and perfectly content that way; a literal Divine intervention caused me to go in when I did--I haven't stopped worrying since.  He is now confined to his swing as far as sleeping arrangements go.  I am not thrilled about this and I wish he were back into his routine and sleeping safetly in his own bed, away from the noise of dinner being made or phone calls being answered.  My guilt compiles each time he wimpers and stirs out of his slumber as I tend to "shhhh"-ing and putting his soothie back in this mouth. 

The pain of my decision comes in a wave when I don't know the answer to how long this will go on.  For the moment I don't feel secure in letting him sleep on his own until he masters certain rolling techniques.  Yet I'm not sure when that will be, or if this is in actuality the real problem.

Only time will tell~*

Mommy-Tired

Feeling a bit edgy today.  Not sure why.  Perhaps I'm just feeling mommy-tired. 

I was finding myself a little frustrated that Marty wouldn't take his regularly scheduled naps today.  I felt like launching into a speech about "If I was in your shoes," but I didn't.  He may have not understand my point of view.  Afterall, he doesn't wear shoes.

Amid screaming tantrums and wailing--my son, not me--I was wondering if this was going to be "the" hill.  One of us was going down.  It would only be a matter of time...

I gave up. 

Daddy didn't exactly validate my efforts by prancing into the room sporting smiles to my weary, slap-happy son.  Marty was amused, producing a bi-polar display of emotions; anything to keep from dozing off.

My headache mounted as we got in the car to do errands.  He started his fuss-fest all over again.  "Why won't you sleep?!"  He didn't answer me.  Just as well.  And when I thought all hope had been lost he was out like a light before we left the drive.  An olympic record. 

Later tonight Marty put up a similar fight for his late afternoon nap.  Swings, songs, smiles, playing, rubbing and rocking would not soothe my angry hornet.  Patience defeated, I decided he wasn't going to nap a third time and reasoned that perhaps because he is turning 6 months this week, he might be settling into a 2-nap routine.  To my surprise, he nursed and fell fast alseep within minutes. 

Am I missing something here?  Everything I try doesn't work but left to his own natural self, he sleeps. 

Feeling mentally exhausted and worn out, I sighed and shook my head.  But how could I be upset at this angelic and peacefully content face settled before me?  I felt guilty that I wanted to scream out loud just a few moments prior. 

Perhaps I am just mommy-tired and need a few naps of my own.~*

The Dismount

Marty is learning to roll over and can go from his back to his tummy--the harder of the two-part process.  If you put him on his tummy before, he would stay up for a few seconds then flop down on his back.  Not so anymore.

He seems to be getting stuck at the top and yesterday he gave me two scares.  I laid him on his colorful play blankie while I went to fetch a new diaper and some socks for him.  I was in his room for nearly two minutes when I heard an ear piercing scream.  I ran back to the living room.  In those quick few seconds I stepped away, he managed to flip himself over on one of his teethers and couldn't figure out rolling back over. 

That same night he gave me another scare, but I shook after pondering a different outcome.  Marty woke up at 3:00am and made some whiney noises indicating he wanted to eat.  Usually he does this for a good 10-15 minutes before it turns into a real cry.  I felt as if I had just gone to bed and desired those extra 10-15 minutes of snoozing so I turned the baby monitor down to a quieter setting.  Suddenly I was jolted awake by angry cries.  Not sure how long I had slept, I dashed out of bed and into his room next door.  To my horror, he was face down and stuck in a corner of his crib trying to rock himself into a righted position.  Quickly I flipped him over, scooped him up and held him tight.  I vowed never to turn my monitor down for a selfish 10 more minutes of sleep ever again.

I need to teach my son how to successfully master the dismount on his roll to prevent future incidents such as these from happening, which give his mother heart murmurs, wrinkles, and gray hair.~*

Tickles & Giggles

I'm realizing my son is super-ticklish.  I realized it yesterday when my hubby tickled Marty's back and he rolled over trying to get away from it.  He rolled again when he was tickled once more.

I also realized it today when I placed Marty on my chest and rubbed really lightly down his ribcage.  I heard some little noises that sounded like small coughs so I stopped and held Marty out in front of me.  He had a big smile on his face.  I smiled back and started laughing.  Those weren't coughs at all, but little laughs; his first giggles.  He sounded like Ernie from Sesame Street.  Too funny!  We played this game some more until his giggles ran out. 

I already couldn't stand how cute he was before.  Now I just can't handle it.~*

Creating the New "Full"

I introduced Marty to solids when he was four months old.  An all night scream-fest inspired me to try something new.  I figured he was teething and the spoons I have are coated and good for gnawing on, so I made up some rice cereal and launched a spoonful toward his red, tear-streaked face into his wide and wailing mouth.  It was the only thing that calmed him down.  Thus the journey had begun.

I only started giving him cereal in the morning.  He was getting constipated (oh joy) and I thought about switching him to oatmeal, but someone told me to try bananas; later I found out this was a binding agent.  The pediatrician told me greens would do the trick, so I gave him some sweet peas--also a binding agent.  Finally the pediatrician recommended prune juice mixed with rice cereal.  This has seemed to work really nicely. 

Upon the 5 month mark, I introduced him to new foods: sweet potatoes, squash, and carrots--which stain everything.  Spoons, clothes and even Marty's face have an orange tint to them and the aftermath looks as if I fed my son Cheetos.  At the 5 month mark we were up to two meals a day, breakfast and lunch, and I was going to hold off on the third meal, dinner, until he reached 6 months.

Well lately I've been waking up with my son at what seems like "ungodly" hours.  And he's hungry.  So I nurse him and it would usually be enough to lull him back to sleep.  Not so, now that I have created the new "full."  I only got smart to this last night after I tried dinner.  He couldn't get enough.  Where he would normally stop chowing at a tablespoon's worth of veggies, his typical consumption during the day, he ate a jar and a half of sweet potatoes and finished it off with 3-4 oz of breastmilk.  Needless to say, I didn't have to feed him during the night.  While he did wake up early a little gassy, a soothie and some rocking was enough to send him back to dreamland.  I've got a growing boy on my hands.~*

Rolling, Rolling, Rolling

Marty is on a roll--literally.  He started last Wednesday, only one day after they introduced this new technique to him at PT.  I put him under his rainforest canopy playmat to kick around while I putzed online.  Some little grunts from his direction caught my attention only a few moments after I set him there.  When I turned to look he had gone from his back to his tummy all by himself and was stuck in a break-dancing style pose with his butt in the air.  I was so excited but he was not amused; I don't think he quite knew how he got himself in that position.  I took some photos of before and after.  He didn't try this manuever on his own the rest of the week, but this week he's taken to rolling very nicely.  I'll have to move some furniture around to give my little rolly-poly more room.

Marty's Sleep (or lack thereof)

I'm going to start Marty on a sleep routine. Not sure how to go about this. I tried laying him down a little earlier tonight at bedtime. I had to go back in three times to pick him up and cuddle, sway, rock, feed, soothe, etc. etc. etc. He fell asleep earlier than usual (7:45 instead of 8-8:30). What do I do and not do to get him proper sleep? He's not a good sleeper during the day, which I'm told could just be his style. He sleeps good at night, but I think he deserves some long naps during the day--and so do I...~*

My Sweet Son

Our son, Martin George Sultes III—‘Marty’ for short—was born on August 6th, 2009 at 4:07am. He is quickly developing a personality. He has the independence and determination of his mom and the quiet resolve and playfulness of his dad. Marty is very inquisitive and loves to explore his surroundings. Smiles alight across his face to music and he stops mid-cry to hear singing. Anyone who holds him simply melts.

There are many special things about Marty. One of those things is that he was born with an extra #21 chromosome. The long title for this is Non-disjunctional Trisomy 21, or what is better known as Down syndrome. Down syndrome is not a disease or an illness. It is an unexplainable chromosomal occurrence in about 1 in 800 babies.

God's faithfulness in preparing us for Marty began even before he became a part of our lives. The desire to work with individuals with special needs had been in my heart since high school and inspired Martin to work as a staff member at a group home in Minnesota. All throughout my pregnancy, I was in constant prayer for our son. In my heart I knew he was going to do great things. I even wrote him a letter which encouraged him to "change the world." I knew deep down he would, I just wasn’t sure how.

Fast-forward to a crisp, early August morning—Marty’s birthday. Everyone who came to visit him told us how precious he was. We couldn’t agree more. I was overwhelmed by such a powerful love for this angelic bundle. He was perfect; our “little porcelain doll.” The most beautiful baby I had ever seen was in my arms and he was mine.

Our last day in the hospital, I was restless and felt overcome with anxious thoughts. To quiet my mind in the still hours before the dawn, I turned in my Bible to a bookmarked Psalm. I let the words of my favorite passage wash over me:

How precious [concerning] me are your thoughts, O God! How vast is the sum of them! Were I to count them, they would outnumber the grains of sand. When I awake, I am still with you... (Psalm 139:17-18a)

I drank in more of the Psalm with delight. This passage of scripture has been my favorite for years, bringing me comfort and peace on countless occasions. I sensed that it was going to be Marty's life verse. I prayed for our little one and thanked God for his precious life.

Before leaving the hospital, a pediatrician came to do Marty’s last check-up. But the visit was anything but routine. She informed us that Marty had a heart murmur. She also informed us that Marty displayed physical characteristics consistent with Down syndrome and wanted to run some tests to be sure. It felt as if the room was suddenly closing in on me. Choking back tears of disbelief, I stepped away to regain my composure. The words of Psalm 139 rushed in:

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. (Psalm 139:13-16)

God’s faithfulness. "Ok, ok." I whispered, trusting that everything was indeed in God’s hands. A week later, the phone call came confirming Marty's diagnosis. Marty’s life verse, Psalm 139, looped in the background of my myriad of emotions. Fear, joy, worry, happiness, sadness, peace—a mixture of colorful cement pouring the foundation of love for our sweet child.

At first we weren’t sure what to expect but we knew we were about to embark on an amazing journey. At 14 weeks, Marty is meeting all the typical baby milestones. He is in the Early On program here in Michigan and continues to wow his teachers and family. And as for Marty’s heart, the doctors believe the problem may fix itself.

We are very proud of Marty’s accomplishments. He is a great blessing and gift. We love him beyond words and we feel very privileged to raise him. We see Marty complete in the person God made him. He is not handicapped or mentally ill; he is far from slow and he is definitely not ‘retarded.’ His life verse explains it all; Marty is fearfully and wonderfully made. We want the world to greet our son with as much enthusiasm and joy as we have. We look forward to watching how Marty will learn and grow and how we are going to learn and grow as well.