Posted in Church, Faith, Healthcare, parenting, Special Needs Kids, The DJ Journey

Even Wonder Women Needs An Oxygen Mask

Moms of special needs children tend to downplay or outright ignore their health. The needs of the child are so great we master the art of caring for them even when our needs are greater. We become so adept at neglecting ourselves for our child we do it without thought. It’s not an attention seeking action it’s survival mode.

Several months ago, I had the unsettling notion something was not right with my health. At first, I had no symptoms. By the time the symptoms arrived, I was in the middle of writing, directing, and choreographing our church Easter play.  I love working with the kids and doing dramas.

This one was extra special because it was the first one in which DJ participated.

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In God’s providence scheduling conflicts led to the play being done a week before Easter.  Any other day and the play would have been canceled.

By performance night, my body screamed for attention.  My health refused to be ignored any longer.  In a span of about 36 hours, I went from feeling like I might have the flu to unable to get out of bed. IMG_9242

What began as me ignoring a typical kidney infection morphed into a full-blown medical crisis.  Words like platelets, blood cancer, leukemia, heart attack, stroke, and premature death engulfed my conversations.

Restricted from any activity, I had ample time to contemplate how I landed on this crudely constructed road.  How did I become so violently ill?  It didn’t just happen.  The answer was clear.  I sacrificed my health in the name of being a strong, nurturing mother giving all and taking nothing for myself. Then came the day when the tatters of my Wonder Woman mentality were strewn about my sick bed.  Everything changed.

There is a reason airline stewardess instruct us that in the event of an emergency we put our oxygen mask on before putting one on our child.  On the surface, the command contradicts the mommy code of putting the child first.  However, the point on the plane should be the same in our everyday lives.  If we do not take care of ourselves, we will be unable to care for our child.   Ignoring our health increases the risk of prolonging or intensifying our illness.  By seeking medical care at the first sign of illness we significantly increase our chances of surviving the monster seeking to destroy us.

I’ve not yet fully recovered.  Don’t know I ever will.

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What I do know is that for ever how many days God gives me upon this earth, I want to encourage others through my mistakes and accomplishments.  So, get that mole checked, stop making excuses for the lump in your breast, don’t assume it is a cold that won’t go away and get a physical every year.  We take the best care of our kids when we take care of us.  Cause to soar as high as she does, even Wonder Woman needs oxygen.

An earlier version of this blog appeared in the Winchester Sun.

Posted in Autism Spectrum Disorder, Reviews, Sensory Processing Disorder, Special Needs Kids

Magnetic Shoe Closure Review

You know those ads on Facebook? Well, I finally ordered something from one. Different Not Less was advertising magnetic shoe closures. The goal is to give disabled kids more freedom. The claim is that children with fine motor difficulties who can’t tie their shoes will be able to put their shoes on independently with these magnets. Additionally, it’s claimed an end to loose laces. The magnets come in an array of colors and are currently marked down from $19.24 to $10.95 without shipping and handling. All said and done I spent about $15. But did they work?

The first thing I didn’t like was that it took 2-3 weeks to get them in. However, I am an Amazon Prime member. So, I could just be spoiled by their two day promise. None-the-less, the magnets arrived right at two weeks, which isn’t too bad.  A great positive note here is that when I emailed them about the shipping their response was immediate and courteous. I love a company that answers their emails daily!

The instructions were easy to read and the magnets went on quick and easy. They are super strong and held the shoes together. My son wasn’t able to use his feet to separate the magnets because he wears braces. Our intent was to teach him how to pull them apart with his hands.  We never got the opportunity.

FullSizeRender (4)The problem came when the little eyelets that go on the side disappeared from one shoe. If you notice in the picture only the shoe on the right has the black eyelet. There should be an eyelet on each side of the shoe. Since we were running around a lot the day the eyelets went missing we have no idea how it happened. We don’t know if they came off on their own or if DJ, who likes to mess with his shoes, pulled them off. Whatever happened to them the magnets are useless without them. The shoe falls off because the magnets keep popping open. The other shoe, with the eyelets, still works fine.

It’s a great idea and I can’t place our failure solely on the heads of Different Not Less. As I said, DJ could have easily pulled them off. But my situation is that we had them working blissfully for a day but currently only one shoe stays closed and on. Would I suggest someone buy them? Possibly.

The bottom line? Although the item pretty much performs as described, If your child messes with his shoelaces I would not recommend it. But for children who don’t grab at their shoes it’s worth a try at the price it’s offered. The company, Different Not Less, is easy to work with, responds quickly to emails, and describes their product accurately. With all that us parents have going on that is the kind of company we like to deal with.

Posted in The DJ Journey

The Glorious First Sunrise -The DJ Journey 2

“Your baby may not survive the night. So, I will sleep on a couch in the NICU so I can be close to him when he needs me,” the neonatologist said to us.

My husband, Steve, and I glanced at one another. I had just given birth to our son DJ, nearly two months premature. Doctors and nurses immediately whisked him away to the neonatal intensive care unit. NICU is where only the sickest babies go. Although the NICU staff is the most highly skilled, it is not a place you want your child to be. If the neonatologist thought DJ wouldn’t survive the situation was about as bad as it could get.

The doctor stood obviously waiting for our response. When none came he said gently, “Do you understand what I just said?” He received our nod and continued.  “Your son will not live to see his first sunrise. Do you understand?” He wasn’t being cruel. His voice was gentle and cracking a bit with emotion from the blow he was delivering. I think he thought we were in a state of shock and not comprehending the circumstances. He wanted to make himself perfectly clear and prepare us as best he could.

“I understand what you’re saying. But that’s not what our God said.” My voice was as gentle as his. But unlike him, I lacked any inflection or hesitation.

The look which crossed the doctor’s face actually made me pity him for a moment. Here he was, with all his medical training, doing the worst possible thing (trying to prepare parents for the death of their newborn) and here we were not responding as we should. Our response was that our unseen, unheard, God said the doctor was wrong.  He looked quite desperately between Steve and me as if hoping one of us would come to our senses. It took less than a heartbeat for him to see that Steve agreed 100% with me. With nothing more to say, he turned and left.

374888_2066195994454_259002162_nAs the door closed behind him Steve and I looked at each other and grinned. We knew the doctor thought we were crazy. But we knew what we knew. And what we knew was that we had seen far too many miracles concerning DJ for him to die a few hours after birth. God was doing something well beyond our comprehension and unlike the many trials that would come later. This time God’s word was crystal clear.

The doctor filtered in and out of my hospital room all through the night providing updates. There were a couple of moments that scared the medical staff as DJ seemed to decline only to rally again. He did nothing to improve his status in the NICU except continue to have a live. The only change was his steadfast defiance of his death sentence. The medical staff was at a loss to explain it.

When the sun rose high in the sky on December 8, 1999, the exhausted doctor made his way into our room. I was sitting up in my bed beaming a thousand watt smile at him, for DJ was indeed seeing his first of many sunrises.

The doctor stared at us for a moment as if trying to understand us before he spoke. “Your son is alive. I’m not sure how or how long he will stay that way.” He rubbed his forehead, still trying to shake off his sleep deprivation and lack of understanding.  “But for now he is alive.” Despite all his expertise, it was all he could say.

It was enough. Later that day I sat beside my very sick three-pound miracle and had to smile. DJ was a mess. He was wrinkly and angry at being born too soon. There was a tube in every orifice possible. Breathing was a monumental chore for him. The tiny baby who had only the word of God in his favor was making fools of well-educated men. But it wasn’t for naught.

On DJ’s first birthday we received a card from that neonatologist. In the card, he 388336_2065986549218_990363180_nexplained that he too was a Christian. He wasn’t aware how far he’d strayed from his faith until DJ was born. The doctor recounted not only that first night and our unshakable faith about what God had said to us but other occasions when DJ declined and we still rejected their prognosis. He informed us that he never expected DJ to go home from the hospital but our faith had him hoping for a miracle.

Once the miracle arrived and DJ went home, the good doctor made a promise to himself. To our surprise, he said he would never again factor out God. No more would he go into a hospital room and pronounce a death sentence over a baby. His patients would know everything his medical training permitted, but he would always allow room for God to work because a tiny infant named DJ taught him to.

What the doctor still doesn’t know is that our faith in the message from God about DJ’s birth wasn’t easily accepted. No, far from it. We had seven months of training, seven months of fear, and seven months of doubt that led us to this beautiful conclusion. And what we didn’t know at that moment, was that this excruciatingly painful Merry-Go-Round of faith was only just beginning.

Posted in Just for fun, My Life My Way, parenting, Sensory Processing Disorder, Special Needs Kids

Snaps of Halloween

This is the time of year when everyone wants to know how DJ and I manage all the Halloween mania.  As parents know, October can be tough on special needs kids. Uncomfortable costumes, sensory overload and an innate fear of overly excited children can combine to create disaster.  So, I thought I’d share a few pictures of how we cope with the madness.

Our biggest rule?  We never wear more of a costume than he can tolerate.

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Sometimes it’s just better, not to mention cheaper, to make your own costume.  DJ loved learning about Native Americans and making his own costume.  Prior to that, when his legs were too weak for walking some colored posterboard and creativity turned his wagon into Thomas the Tank Engine.

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We practice before the big night. Whether he needs a signal to say the noise has become unbearable or if he just needs to get accustomed to what he’s wearing, practice makes perfect.

 

When we go to the pumpkin farm we go to a small, less busy one and on an off day.  That filters out some of what my sensory boy finds intolerable and helps him branch out to new sensory adventure.

 

But in the end, if watching is a better option than actual participation, that’s okay.

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You won’t get there overnight.  Just take baby steps, introduce the easiest new activities first and don’t get frustrated.  Our kids may be a little quirky and off-beat but never hopeless.

 

 

Posted in Uncategorized

School Saved by …. Pokemon?

As you all know I have been in the throes of my yearly pre-school breakdown.  Our homeschool starts on Tuesday and despite the annual nervous fit I have, I generally at least have the bulletin board done by now.  Not so this year.  This year I decided to be Mommy, teacher, therapist, nurse, AND writer.  Why?  I do not know.  Apparently, because I’m just not that bright.

Anyway…I went where I always go for inspiration – Teachers Pay Teachers.  I found a super cute Pokemon bulletin board set for a buck!  Hardcore Teacher Resources offers it.  Go here to buy it for yourself. http://www.teacherspayteachers.com/Product/Gotta-Learn-Em-All-Bulletin-Board-Set-2702394

Me being me I had to add to it.  I printed a name of a Pokemon on the back of each pokeball.  As DJ learns a word, task, or math fact I will remove the ball and give him a laminated picture of the Pokemon listed on it.  This is akin to him “catching” them.  This would be a great contest for spelling or math classrooms or even for homeschool students to compete against each other.

The picture below demonstrates my work for the day.  I am pleased.

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Posted in Education, Uncategorized

School – AGAIN??!!

How did this happen?  How did summer end and school begin without my permission?  Granted I have more freedom because I homeschool.  But because I homeschool I’m also more frantic!  I need a homeschool 911.  You know someone I could call to write my lesson plans and figure out the schedule.  I’m willing to teach the kid if someone else will do the prep work.

The problem is DJ is special needs.  His skills are obscenely scattered.  I’m poor.  I can’t afford to buy homeschool curriculum in three different grade levels.  That means I write lessons to fit his needs.  Do I have time to write his lessons?  NO!  I’m trying to write a book so that next year we actually can afford three different homeschool curriculums.

Since I’m a homeschool hoarder (there’s a reality program for you) I have tons of worksheets that combine to make – NOTHING!  Will social services come and get me if I just throw random stuff at him?  If they do come I wonder if I could talk them into helping me sort through the random mess?  After all, that would be why they were called.  They should at least do something while they are here.

The one good point about this year is I am far more organized.  My kid may not learn anything but hey, the organization will at least make it appear as though he is learning.  I need help people!!!

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Posted in Uncategorized

Joan Zone: Your student’s map to success

We’ve all had the days when we get up late, can’t find the car keys, spill coffee after slamming on the brakes for the car in front of us and wind up 15 minutes late to work stressed out. That’s every day for a kid with sensory issues. Add changing schools or classes to that and you have a perfect recipe for disaster.

Source: Joan Zone: Your student’s map to success

Posted in parenting, Special Needs Kids

Winchester Sun Column

To read my latest Winchester Sun column click the words in bold. Another box will open up with the link then just click on that. Do You Know Someone Special  As always, please interact on the Winchester Sun website by liking or commenting on the column to show your support. Thanks everyone.

Posted in Bullying, Celebrities, Special Needs Kids

Open Letter To 50 Cent

Today I saw a video of you shamelessly mocking a kid on the autism spectrum.  I am the mother of two special needs sons one of which who is on the spectrum. I am also the founder of P3 an online support group for parents with special needs kids. I say this to let you know I am well-versed in dealing with people such as yourself.

It appears you singled out an average working man to mock for your own narcissistic reasons. Who knew that the average working person who spends money on your albums was such a scourge to you. Your defense in such deplorable behavior is that you found his behavior odd and thereby deemed the “younger generation” messed up. That would be your second insult upon the individuals who buy your albums. At this point, it would be fair to say you must have a disability of your own or be strung out on drugs. Why else would you insult, video and mock the very people responsible for your monetary livelihood?

At this point, it would be fair to say you must have a disability of your own or be strung out on drugs. Why else would you insult, video and mock the very people responsible for your monetary livelihood? However, unlike you, I don’t force such unmitigated opinions upon others. I am educated enough to know that in this world there are a significant number of individuals with debilitating disabilities that you know nothing about. Therefore, I will enlighten you.

The fact that the Cincinnati/Northern Kentucky Airport employees someone on the autism spectrum should be commended not mocked. Too many of these able-bodied individuals are discriminated against in the workforce. Businesses often fear their patrons will respond exactly as you did and therefore a person who could make a decent living is left with nothing except government assistance because he/she can’t find employment.

Thankfully personnel at the airport know what you do not, that individuals who are on the autism spectrum are not only employable but often make the best employees. They are committed, hard-working people who have more courage, strength, and stamina than you could possibly exhibit in a lifetime. And considering that you love to doctor your vernacular with f-bombs shows that you lack the exceedingly intelligent vocabulary those with Asperger’s Syndrome possess.

Your behavior was atrocious,despicable and you should do exactly what you are doing, fail to respond and hide your face in shame. Your behavior, rooted in ignorance and un-education, is something the “younger generation” doesn’t need exemplified.

So I am asking you do the world a favor and educate yourself. If you find that task impossible then please the next time you feel the need to point out ignorance find a mirror or turn the camera on yourself.

 

Posted in Education, My Life My Way, Special Needs Kids, The DJ Diariers, This N That

What Does Time Cost at Costco?

In a world that is daily increasing in the number of special needs children, it is exceptionally important what parents teach their typical children. Even toddlers have the ability to recognize that DJ is unlike them. Of all the responses we receive in public, we never had one like today.

Costco shoppers have always been the most tolerant. They smile and go out of their way to speak to DJ. Once in Walmart a woman actually said to me, “What’s wrong with it?” In reference to my child! DJ isn’t stupid. He picks up on unkindness. So, needless to say, Costco is DJ’s favorite store. Since the store is so big we push DJ in a wheelchair which really draws the eye of children.

Today two little boys were riding in a shopping cart and caught sight of DJ as we rounded a corner. The oldest looked to be maybe five and the younger about three. The younger questioned his older brother about why DJ was jabbering and flailing about. Their mother, unaware of what was taking place, pushed them away before I could hear the older one’s response. As we were leaving we ran into them again. The older one immediately began hollering at DJ and waving frantically at him. I mean this kid was serious about getting DJ’s attention. When he did, DJ gave him an enthusiastic wave back. The younger one immediately turned incredulous eyes upon his brother.

“He waved at you.”  The little one was so in awe you would have thought his favorite movie character had just come to life before his eyes.

“Wave at him. He might wave at you too,” was the older child’s advice.

DJ, now seeing he has the attention of two children, is jabbering in that dialect that only he understands. He was rocking the wheelchair trying to roll over to the two. His little arms were flailing about as he simply couldn’t contain the enthusiasm of having what he rarely has; the undivided attention of another child.

When the youngest one, with his big beautiful brown eyes round with wonder, gave DJ a wave and DJ jabbered and waved him the little boy just couldn’t believe it. These two little boys were amazed that DJ was “talking” to them. When their mother turned to see what all the excitement was about they both began pointing at DJ with enthusiastic gestures and simultaneously telling her how DJ was waving and “talking” to them. We had a good laugh about it while all three boys were going crazy over each other. Those little boys were amazed that DJ was interacting with them.  They treated DJ like a rock star.

Parents need to know the importance of encouraging their children to ask questions about DJ  and to interact with him. DJ LOVES to get the attention of kids. He tries his best to talk to them either jabbering or using his iPad. Unfortunately, it is a very rare occasion when the child will respond in a positive manner to him. Science has shown us that children learn physically and intellectually from other children. Therefore, no one wins when the opportunity to interact with a special needs child is lost.

Somehow that mother at Costco has successfully taught her two very young boys that they should be accepting and loving of all people. And in the process of doing so, her children made DJ, for a brief moment in time, just like every other little kid. That is a blessing that defies words and will have a positive impact on DJ for the rest of his life.