We Shall Overcome!

Last night Nathan and I had the privilege of attending a homecoming type basketball game for the local special needs community.  The event was sponsored by Real Life Ministries AND North Idaho College.  This evening was all about the participants!  They were out there on the gym floor as bright shining stars!  Each person had a grin from ear to ear as they hustled across the basketball court playing and giving the game and their teams their all.

As many of you know my son, Nathan, has Down syndrome and has only recently come out of his shell.  Loud noises, auditoriums, crowds and over stimulating events would keep him at home in the safety of his room.  With much hard work, practice going out in public and dedication, he has developed much greater tolerance for such events.

Many hours were spent into getting this event put together.  There was a high school band, cheer leaders, precision drummers, dim lights .. a tunnel of blue smoke the athletes ran through to start the game.  Any single one of these is a triumph .. put them together and we have VICTORY!

Go Nathan!

The Birthday Boy

... a few days late.

Nathan had his 16th birthday ten days ago.  He has come so far.  Happy is written all over his face (as well as some of his dinner;)   He's been bugging us for a dinosaur shirt for the past three months.  Was he surprised .. even the ball has the mouth of a dinosaur with teeth showing.   Pants and shoes to match were also requested (LOL).  He is the biggest walking commercial addict I know.  Anything Disney or Universal Studios makes him happy.

One Year

... to make a difference.

Nathan had intensive behavior intervention (IBI) for one year.   Somehow, with all of the work involved, a light was switched on and family life has resumed to normal.  I LIKE the new normal.  Maturing has been a big help.  But, all of the little gimmicks we used to 'train' up our child have been dropped (for the most part) and new (much improved) behavior has been firmly established.

Nathan .. Ready for a ride

I no longer live and breath in fear and for that, I praise God.  Nathan continually brings home notes from his teacher that he had a good day.  He plays hard at P.E. ... is learning to use his iPad for communication at school, attends an after school program twice a week .. and is awaiting anxiously for spring so he can start his developmental (horseback) riding lessons.  And this from a boy that had to be pulled through the horse barn just two years ago at the fair!  A few summers ago he 'went through' three or four summer camp aides ... two days of Nathan was enough to send them looking for another job or be reassigned.  That's the summer we met Miss Paula (an interventionist).. and our journey began with IBI.

If you are the parent of a special needs child needing behavior modifications, have a talk with your pediatrician by mentioning your concerns.  We would have never gotten help had I not spoken up during a routine yearly medical exam; that's when our doctor recommended IBI.

More and More ...

Nathan as a wee babe 1997

independent.  That Gift of mine (Nathan .. the possessor of an extra chromosome) has got his groove on.  Pretty self reliant of late is he!  After spending months and months with an in home therapist, he has got himself in order.  Bathing, washing his own hair, eating at the Christmas table with eleven people, brushing teeth, shopping, extra outings after school twice a week .. just to name a few improvements.  God is good .. and I am blessed.

Just Dance

Nathan has been back to school for nearly a month.  He had a nice surprise at school;  his (favorite) 5-6th grade teacher has moved up and is now his 8th grade teacher.  He is so happy to trek off to school each morning and is continually making progress.  His in home therapy has ended as he met all of his goals.  Now he spends two afternoon/evenings a week receiving developmental therapy in a group setting with a new set of goals.  This is a BIG deal for him .. considering that only a year ago he would barely set foot inside the building.  His comfort level has greatly increased.  My once introverted son is comfortable enough to dance to music in front of his peers.  Praising God for His goodness!

Ever Thankful

Nathan .. age 15

Thankful for one left in the nest.  After Ann moved out in May, I have come to discover it would be pretty lonely around here without any youngins at home.  Nathan (the possessor of an extra chromosome) is perpetually youthful and adds great joy to life.  To be so young at heart .. always .. is a gift beyond measure.

Every part of life is a season.  I think the empty nest phase would be quite .. well empty without our special needs son.  So thankful God knew we needed him before he was born.  Even with all of his challenges, life adds a richness that would be lacking without him.

In God's infinite wisdom .. He has blessed us and given us reason to have joy as we enter the golden stage of life.

Christmas Week

... finds the Mac home making preparation for the coming celebration of the remembrance of Christ's birth.  Often times this gets lost in the secular world .. but as Christians .. it is foremost in our home.  I've done some baking, more decorating, and cleaning.  We will have a houseful this weekend.  Our oldest daughter and her family will be staying overnight on Christmas Eve.  Christmas day will find 12 people at our dinner table including family and friends. 

Today the weather was in the low 40F's .. clear skies .. this tempted me to do a load of laundry to hang outside ... just because :)  too bad it all got washed yesterday .. it may be quite a long time before another spring day happens this winter.

Nathan is home from school this week.  He continues to amaze me with the progress he's making.  currently he is working on bathing skills AND learning how to cope when other people laugh out loud (LOL).  This has been a tight rope walk until now.  I can honestly say that life is more typical in our home with his new self control capabilities .. can I get a big AMEN!?

Cookies have been baked.  Most of the grocery and gift shopping is done.  Mr. Mac has been the gift wrapper extraordinaire again.  It's nice to have someone help with the extra work Christmas brings. 

Chocolate Brownie Drop Cookies

Have a blessed day.

Pleased As Punch

Finding what motivates Nathan seems to be the key to his success that he's currently experiencing.  Now that sounds like it (the motivation) would work for anybody .. and why didn't I think of it in the first place? .. humm .. not quite so easy to unlock a child that displays autistic traits .. easier said than done.  But, this is just the ticket .. along with a fantastic therapist that has brainy ideas and challenges me to think outside the box.  His latest adventure .. taking a bath and having Nathan doing most of the work .. (soon to be all of the process).  Just how are we motivating him?  Well .. little pennies to be earned for staying focused.  Pennies have helped him transition from eating in his room to now regularly enjoying meals at the dining room table with the whole family.   They have also been used to have him go shopping and staying by my side .. even when walking down the toy isle or frozen food section (favorite places he used to get side tracked and take off to visit ALONE).  Last night we started on the bathing skills.  A simple back brush with a puffy scrubber end .. seems so simple why didn't I think of it first ... was his to begin using; a better choice than a washcloth with his delayed small motor skills.  You can see from the after picture how proud he is .. even combing his own hair.  Little steps .. to big success.  Next stop ... transitioning to using a shower.  I have no fear of Nathan lagging behind any longer.  Praising God always!

More Than Able

Nathan Springing To Life

This past week found Mr. Mac and myself attending a meeting at Nathan's school with his teacher.  At times I have no idea what he's capable of doing .. because when he gets home from school, it's time for him to unwind .. have some quiet time .. dance .. watch a movie.  He rarely gives me more than a nod when I ask how his day at school went.  OK is his word of choice.  OK can mean he had a good day or a bad day.  OK and NO are sometimes interchangeable with Nathan.  Short answers do not always answer questions.  At one point during the meeting we stepped into the classroom where Nathan was studying.  There he sat with a few other children at a computer desk ... wearing a headset ... and surfing the web.  Now, I had no idea he could 'surf the web' .. but there he sat .. surfing the web.  He is mainstreamed in P.E. and is excelling ... and now sits in a circle for reading .. taking turns .. practicing moving his finger under the line of words the other children are reading.  Last month we ate out at a restaurant that had white butcher paper on the table as a covering .. crayons were provided for amusement .. so I started writing out simple words ... family names .. and Nathan was reading them.  I am witnessing a miracle in my child's progress.  He is developing good coping skills and losing some of the 'fright/flight' antics that once dominated his behavior.  Being in crowds is less frightening .. he's growing up ALL AT ONCE right before my eyes ... Praise The Lord!

Nathan ... Waking Up To The Beat Of The Drum

Most days find our son, Nathan, somewhat apprehensive and shy.  That is ... until ... he turns on some music and starts dancing (spinning) .. non stop until he either wears himself out ... or I purposely 'unplug' him.   Sometimes it's a struggle for the rest of the family to 'endure' another playing of 'Little GTO' ... or ... surfin' 60's music, or The Monster Mash, as he can listen to the same selection over and over.  Thank goodness when we built our home I had six inch walls stuffed with insulation and solid wood doors put on the bedroom doorways lest his bedroom would be moved to the basement ;)  On the bright side .. Nathan often sings along with the music ... helping him to practice his speech.  My once un-intelligibly voiced son is starting to string three and four word sentences together.  Music ... soothes the savage beast (so I've heard) ... and brings out the best in Nathan.  Normally, loud noise sets him off in a tizzy ... but not so with music .. to him it's a white noise pleasure.  BTW ... I have to frequently change the furniture placement so as not to wear a hole in the carpet.

Hallelujah! Sing to God a brand-new song,
      praise him in the company of all who love him.
   Let all Israel celebrate their Sovereign Creator,
      Zion's children exult in their King.
   Let them praise his name in dance;
      strike up the band and make great music!
   And why? Because God delights in his people,

      festoons plain folk with salvation garlands! 

Psalm 149:1-4 The Message Bible

Thank you, Dr. Boucher for exploring this topic with the many families you have helped to think outside of the box in the physical and occupational therapy areas of your expertise.  To read more, visit her site, Therextras and follow her third annual blog carnival coming soon.

911 What's Your Emergency?

"Hello ... This is Mrs. Mac.  I have a little son with Down syndrome and he's missing from his bed.  His shoes are gone and his older sister heard the front door shut about five minutes ago.  We've been looking for him inside and outside ... calling his name.  It's pitch black and we live in the woods.  pause ... blood curdling scream can be heard outside (sounds as if coming from a girl) ... Sir ... we've found him, thanks .. and sorry for the trouble.  Click."

Mr. Mac soon calls out that he's found Nathan.  This happened last night around 10PM.  Ann was already in bed and the Mr. and I were watching a movie downstairs in the family room.  The scream??  It was a neighbor girl ... seems Nathan just walked into her home unannounced.  Later I asked why he left and he said he wanted to watch a movie with his friends.  You can bet we will be hiding his shoes at night.  You can bet that our home's alarm. door chimes are once again turned on.  And you are wondering why I have so much gray hair?;)

I Broke Down

... and took Nathan to see a nurse practitioner this morning.  His sniffles turned into a sinus infection and he just couldn't shake it after nearly two weeks of home therapy.  She checked his chart and found that the last time he had one was January, 2009.  For him, that's progress.  So the much dreaded antibiotics were prescribed .. along with a prescription nasal spray.  How did people survive (or suffer) sinus infections prior to antibiotics???  I'd really like to know.  The thought of using a netti-pot on him is about as looked forward to as clipping his toenails ;)  so I'll be skipping the former and tending to the latter:)

Childhood Expressions

... I'm participating in Dr. Barbara Boucher's blog carnival over at Therextras.com.  Her theme this time around is about Childhood Expressions.  I can think of no other post that expresses Nathan ... and his unusual language ... than borrowing some good insightful info from a condensed previous post.  I give you: 

'Eyes OK'

We've had our share of ups and downs with all things Nathan related. Being the possessor of an extra chromosome has its advantages and disadvantages. A few of the downers are health, physical, cognitive and speech challenges.  For example, On Wednesday he had an appointment with an ophthalmologist which went something like this: The doctor's Assistant persuaded Nathan to sit in the big up and down exam chair. "Please read the top line in the mirror." She had little insight that he has unintelligible speech ... but soon switched from letters to numbers. After I informed her that she might try shapes, she dug out a slide with stencil looking animals, a car, house, etc. This proved pointless and she gave up. All the while he's trying to ask her if she plans on giving him a shot. Next, in comes the doctor. He plans on putting eye drops in Nathan's eyes ... but first is asked something about a shot. "No, we don't give shots here." In go the drops and after a few minutes, the 'dance' of unintelligible communication proceeds between the doctor, Nathan, and myself. I was the interpreter, and calming force. Somehow, the doctor, with the help of his hand held lenses, was able to deduct that my child is farsighted and has an astigmatism ... but does not need glasses.

Lost In Translation:

Here is a sample of Nathan's vocabulary:

ice (said while pointing to his eyes) = he's thirsty and wants some ice water. Since ice and
eyes sound alike ... he points to his EYES.

mirror = "come here"

boom = the name he calls his 'security blanket' which just
happens to be a little plastic yellow garden spade

Ma = all things related to Mom (me)

KeeKee = (older sister)

Wowa = (older sister)

baby = nephew Jacob

Ha-nee = Holly, his dog's name


eee-eee = said while signing to eat

no = no (the same in every language) his favorite word

nu-do = noodles/pasta

cut = splinter

bee off = make the (bee sting) pain go away

bee off blip = the pain is gone

Words he uses sign language for:

French fries, cookie, please, sorry, help, water, sleep, potty, eat, chips,
baseball, basketball, soccer, book, cat, ready, play, friend, Jesus, fruit, more,
ketchup, NO, days of the week, happy, sick,

edit: the sign for 'vagina' was used incorrectly (much to my horror) as his sign for his Playstation Game. Two acquaintances asked if I knew what he was signing ... well, we now have an appropriate sign for the word game being used. :)

As you can imagine, one has to be well trained to be his mother ;)

Did I mention he's the joy of my life???

Is it any wonder that I've installed a Voice4u app on my iPhone.  This application has touch screen icons with an audible 'voice' that he can scroll, tap & touch to help make known more of his needs and wants.  If you are interested, check out the website here for a demo and more information.

"Satisfy us in the morning with your unfailing love,
that we may sing for joy and be glad all our days."
Psalm 90:14

Five Minutes Of Freedom

Today Nathan played unsupervised for a whole five  minutes on the driveway.  Not such a big deal to most 14 year old boys, eh;) ... but this little guy has been known to take off.  He possesses an extra chromosome and has been a challenge to figure out most of his life.  Lack of his personal safety, awareness of his body in space, poor communication skills, and a myriad of other baggage has haunted him and our family for years on end.  He had this freedom because I was reading his mind.  Today is his bowling day with the family to celebrate his birthday.  I knew he only wanted to wait until the family was out the door.  Ann asked, "do you want Nathan outside unsupervised?"  ... yes, perhaps just this once ... after all ... it is HIS five minutes of freedom and my five minutes of being a normal mom ... we have strange ideas of normal in our family:)

Sunday Afternoon ... Rest ?

Another day of rest as I recover from a pinched nerve in my neck.  Mr. Mac and Patrick headed out to church this morning.  I stayed home with Nathan ... he seems a bit agitated and complaining about his head hurting ... he seems not to notice the more he screeches the greater his head hurts ... no amount of reasoning seems to work with him.  My job is to sooth him and set him on a path for calming his inner being.  Not an easy task at times ... especially when the 'calmer/mother' is trying hard to rest quietly.  A dog chasing after its tail is a good description of life in my world today. 

Photo credit: Here

A New Boy

Hallelujah!  Nathan is now in the school mode.  We had an uneventful morning.  He was pleasant ... ate in the kitchen with his family ... walked to the car without assistance :) Disneyland may have been one big OVERLOAD to his senses .. especially being there for two days!  But you can see from the above pic that he enjoyed riding the Casey Jr. train ride ... even sat in the monkey car:)

Donkey Feet Again

Change and Nathan are not a good mix.  Five.  1,2,3,4,5 that's the number of days until he can stay home from school.  Four.  1,2,3,4 .. 4:00 PM is the time he may veg out in his room.  It's going to be a long day for him.  After his bath ... and morning routine ... and thinking he understood about the 1,2,3,4,5 days until the weekend ... he turned into a stubborn donkey ... firmly planting his feet ... and had to be carried out to the car by dad.  I can't wait for Mr. Mac to get back from dropping Nathan off at school ... to see if Nathan 'got it' that vacation mode is over and he's got to switch to 'school mode' ... a hard task for my boy that dances to his own music. 

Help! I've Created a TV Addict

... I'm talking about my son Nathan.  When he was small, I used the TV as a distraction to get him to eat by mouth.  His colon ruptured at birth and he required tube feeding for several years.  I'm also guilty of allowing him to watch too much as a way to escape from some of the stress taking care of him ... only now, I'm thinking I have created a bigger problem.  We have no TV reception.  But he does have a TV/VCR in his bedroom.  We also have a TV/VCR in the great room.  Before you all tell me to just take the TV out of his room, that's not going to happen (yet).  I just need encouragement, prayer, and determination to get his mind in the here and now and not stuck in a re-run movie or cartoon.  Once he's weened from the TV I've got to have plenty of other activities to occupy his time.  Additional chores, games, books .. outside play (we have no snow this winter :)  This is not going to be easy even if he cuts out 1/2 of the TV he watches.  He's got sensitivity issues and aversions to being in rooms with more than two or three family members so he retreats to his room.  This is a complexity of issues.  He does attend school and has developmental therapy six hours a week (at home).  It will be a long drawn out process ... I'm not looking forward to any of it.  Any suggestions WOULD BE APPRECIATED!

Mommy Had A Meltdown

again ... and Hubby came to the rescue! What to do? I had to pick up Nathan from school to get him to a dental appointment last week. This after the day before taking him for a psychological evaluation all by my lonesome. Not to mention it was the docs first day .. and Nathan was his first patient. My child shyly hid behind my arm barely engaging or looking the doc in the eye .. and I had to interpret his muttered speech. I think the doc was amazed I could translate a favorite movie beas chs..mssss into 'Beauty And The Beast, The Enchanted Christmas'. How on earth an evaluation can be made with a non compliant child is beyond me ... but pray that the doc got enough info because we really need the eval. On to the meltdown ... after suffering through the previous day ... my nerves were frazzled. This dental appointment was made a few months ago. Most days I can count on one of my adult children or husband to keep an eye on things at home so I can run a few errands. But one by one as I asked nonchalantly what everyone's plans for the day were ... they had somewhere to go. How would I manage Nathan at the dental office AND take care of my little two year old grandson? Hubby was soon to be on his way to work ... I had only mentioned is the car seat in the garage ... when it was discovered that Ann had it strapped to a seat in her van ... sitting in a parking lot at college ... thirty minutes away. Here comes the meltdown part. My knees started getting weak .. I had that queasy feeling wash over me .. for a moment I even thought about calling the dental office and telling a little white lie about Nathan being sick ... but they were out to lunch and no one answered the phone ... they require a good reason to cancel so late ... or you get charged for the appointment. I had a good reason ... but one probably not on their list. Come to think of it ... I was too ashamed to make the dastardly call and asked hubby to do the dirty work. Aaah .. well, I can't get a hold of the dentist .. I can't leave to get son because baby is with me and without a car seat ... and hubby is getting ready to leave for work. I was really wondering when hubby would just say ... honey it's OK ... I'll just call into work and take a few hours of personal time when out flew those words from his lips .. that was my green light to head for Nathan's school not even knowing if hubby could get the OK to come in late. God must have overlooked the almost white lie I asked hubby to tell ... and He had gone before me to prepare Nathan to be in a good mood at the dentist office ... and on a scale of 1 to 10 .. he got a 9 for cooperating this time. No papoose or sedative was used ... only a minor restraint from three adults as the doctor lowered the exam chair. Life is not normally this hectic as I don't venture out much and for good reason.

My name is Mrs. Mac ... and I'm a recovering mother of a special needs child ;)
Nathan is my son that possesses and extra chromosome.

Imagination At Play .. The Great Pumpkin Train Run

Play and imagination are great tools for children to develop. Yes, some use their imagination in such a way as to become something outside their ordinary capability. Take my son, Nathan, for example. He is rather standoffish most of the time until you are invited into his social world. In this world, he is just an average (well maybe not so average .. but for him, it's average ;) kid with some of the similar likes and dislikes as any teen: A girl he's sweet on; the most current movies (albeit, still in the Disney mode); video games (OK, not the violent ones), and so on. Then there is his imaginative side. The one that comes out once in a while when he dons his 'Mr. Incredible' costume. A macho side that struts with his (fake) pumped up muscles to show the world that 'he's all that' (to quote a passe teen phrase). The imagination at play is hysterical from my view but important none the less. It shows me a more 'typical' side and what Nathan is capable of.

Yesterday our family went on a scenic fall train ride ... and for a few moments Nathan was able to SHINE while he pretended to be Mr. Incredible. Then the spell was broken when some nearby train patrons decided to laugh and cackle out loud SO much as to send him back 'inside' his being. Back to a standoffish little boy that has quirky behavior (autistic traits) and needs the protection of his family. But, oh for a few moments, he shined brightly!

Pics: Top .. Mr. Incredible/Nathan
Bottom .. Nathan with big sister Elizabeth and his little (dragon) nephew Jacob