Where are the Special Needs Resources?

I've been bothered quite some time now on the extreme lack of good (if any) resources out there on raising a child with special needs (specifically Down syndrome) from a Christian perspective. There are no groups, no section in bookstore, no online forum specifically dedicated to this. I am not content with the blurb I read in a newletter or a small article tucked into a magazine from time to time. There has to--needs to--be something more.

As a new parent, I scoured the shelves of every media ladened outlet around. I searched tirelessly on the internet googling every word I could think of which might lead my heart to a warm hearth of moms I could connect with. My search still continues...

Perhaps this passion has been placed in my heart because I have been designed for such a task. I keep praying I'll find something, but keep coming up empty. God, show me a way if this is Your will.~*

Engravings

My dad was an absent father.  He has made choices in his life, even still to this day, that sabotage all chances of any relationship he might have had with his children. Of course I remember most of the bad times more vivid than the fond times we had with our dad, but I try to keep those fond times in mind.

He used to take us fishing at a local park from time to time. He loved fishing and each of us kids had our own Disney fishing pole set up right alongside the rest of the poles at the dock. We had our favorite place to fish on the dock and so my dad carved our names very deeply into the top plank. It stood out among all the other names on that piece of wood and the grooves were deep enough so that we could place our chubby little fingers in them and trace our own names. We were very proud of that small token of affection.

Even after my dad and mom were divorced, we would visit that park from time to time and walk that dock, seeing who could spot our names first. Each time it would get harder and harder to find. There were more names added to our plank and weather and sheer use had worn the wood down significantly over the years. We'd try to trace our names with our growing hands but it was not so easily done.

The last time I remember visiting the park was at our church picnic about six or so years ago. I was newly engaged to my now husband and I wanted to proudly show him the small piece of heritage my father had left us on a rotting piece of wood. We walked the dock about three times, but I could not find our plank. When we finally found our names which were engraved so deeply at one time, I was pained to find that they were a mere shadow among a miriad of other names which had been carved over ours. It broke my heart and I wanted to cry. I walked off that dock with sadness growing deeper with each step.

Then the Lord spoke to me. "I have engraved you on the palms of my hands (Is. 49:16), and that will never fade."

My heart filled with joy as I remembered my Heavenly Father. I had allowed the Lord to take the place of the hole in my heart that my earthly father left when I had gotten saved about five years before I took that last stroll down the dock. I am so thankful He reminded me of His great love for me, despite what my earthly father has failed to do.

I hope you are encouraged today that although we can't see Daddy God, He is truly able to be that wonderful Father to the fatherless who's love is ever evident in the engraving on His hands.~* 

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?~*

One and Only

When Christmas came this year, I understood Mary a little more.  I'm a mother now, and I also have a little son whom I cherish and adore deep within my heart.

Easter is here, and I cannot understand why God the Father would send His One and Only son, perfect in every imaginable way, to be beaten and scorned for the sinners of the world--for me.

Click on this link to see a brief look at The Passion by Mel Gibson and "Were You There?" by Selah

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.~*

Reduce, Reuse, Recall

As I trip the light fantastic at the latest Mom-2-Mom, I only have one thing in mind: deals.  Part of the resale shopping high is price comparison; I gloat about my steals to anyone who will listen.  I have lost track of the hundreds of dollars I have saved over the past years by buying second-hand items.  Not only do I get a thrill by saving money, I also feel I am doing my duty as a good citizen of Earth.  Reusing is a great way to be green.  But as a very smart consumer, I really should be considering another aspect to this surprisingly risky business: recalls.

I sold an infant sling to a young new mom this weekend who instantly wanted to try it out with her newborn son.  I helped him in and refitted the strap for her and off she went, smiling at her great find.  This morning my mom's stomach turned as she heard the latest recall on the news--my infant sling, which has caused three infant deaths so far. 

Go with me if you will a few months back to a clearance end cap at Target.  I am 8 1/2 months pregnant, swollen feet, and nesting--which means I am on a mean bargain hunt making preparations for my son.  We find a great stroller to replace the not-so-great bargain stroller I had to have a couple pregnancy-moment months before.  The not-so-great bargain stroller I purchased on Craigslist and agreed to buy it before looking at it.  When we got it home, I was sorely disappointed after discovering the replacement parts, which I had convinced myself of all the way home could be easily found on the manufacturers website, were no longer in production and despite my meticulous searches to find a supplier, the had-to-have product was a bust.  I was pleased as punch when the shiney new stroller was assembled and ready for D-day.

To my chagrin, it has recently been recalled because the canopy can lacerate or cut-off a child's finger tip.  A new canopy can be reordered through the company.

But I've been down that road, too.  Our crib, another great find on Craigslist, was recalled just a week after we purchased it.  The hinges holding the matress board in place were not as strong as they needed to be and were breaking and causing serious injuries.  New hinges were sent to us as a replacement.  The second serious recall on the same crib was the drop-down siding, which could cause a child to be caught in between the rail and the matress, causing strangulation deaths across the country.  We were informed that a new fixed rail would be making its way to us...eventually.  After eventually waiting four months where our child had to sleep in his pack-n-play, we collapsed the apparent death trap and took it to Babies R' Us' own cash-for-clunkers and got a discount on a brand new not-yet-recalled crib.

Perhaps getting the best bargain on a gently used baby item doesn't have as much glory as I thought.  Can I risk a recall on an unknowingly dangerous older item because I want to save the planet? 

Of course I'm wondering, "Who's to blame?"  In discussing this with my friend, a co-mother, we both admitted tossing aside the instruction manuals at the excitement of the finished product.  Are people out there really that naive in thinking, "That won't really happen to my child," and use the product inproperly?  Are American's misuing product and then turning their unhappy outcome feelings on the people who made the item?  Are we really that sue-happy?  Or maybe it really is the baby gear companies' fault.  Perhaps in an effort to boost sales, they put quantity over quality and push out new stuff each season without really taking the time to test and re-test the very things which hold our precious cargo.  I imagine millions of products being recalled can't be good for business.  

I'm second, third, and fourth reguessing my trust in all these seemingly safe baby products.  And I thought H1N1 and SIDS were my biggest contenders.  I guess I'll have to rely on good ol' instinct and common sense if my child is going to make it to age 10.~*

Holy Zumba

Cheesy aerobics videos, endless boring magazine articles tucked in mom magazines of trim ladies using soup cans as hand weights, and the ever intimidating gym membership complete with tireless professional stair-steppers has surprisingly done nothing to inspire me into action.  Yet, I dare say, there's is an exercise routine out there that's worth looking forward to. 

Zumba!  If the name is as fun as it sounds, sign me up!

I've been bugging my husband for years now to take a dance class with me in order to get or keep in shape--whatever comes first.  Motivation is key when it comes to this sort of thing, and fun is definately high on the motivation list.  The dance class hasn't happened, but I found something more intense and invigorating than two-steppin'.  Zumba is packed with high-energy, fast paced movements to deliciously diverse music.  The slammin' dance moves keep your body grooving.  Your muscles scream, "STOP!" but your mind shouts "GO!" as you move to the beat.

I think I found my antidote to my companion, the blessed baby-weight.~*   

Photo Journaling

I've read and loved the book 3191: A Year of Mornings.  It is a photo journal between two friends who live in the city of Portland on both the east and west coasts.  Each morning the friends took a snapshot of something in their routine.  Wonderfully, the photos of the day seemed to compliment one another or in some cases, resemble the very same things.  The pictures captured such beauty and elegance in everyday, ordinary objects.  A peppered omelette over toast, scattered crayons from a child's drawing, raindrops on the window pane.  It was as if to say if you stop and smell the roses, you'll find they actually have some color, too.  Simple photos--a breather in one's busy day.

My long time wish is to take on this task of photo journaling.  Hopefully I will be able to better my skills with the lens and take some daily breathers as well.~*   

Transformative Power

If people really knew about the miraculous, transformative power of having a child with Down syndrome, they'd all be praying for one themselves.~*

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.