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

Military Wants My Special Needs Son

Dear Selective Service Person;

I received your letter requiring my son DJ register for Selective Service. As a deep patriot, I must inform you – you don’t want that boy!  As great as America’s military is, they are not prepared for my little weapon of mass destruction. DJ has many strengths, but he’s a little quirky.  Do you really want an enlistee who even Santa gives the side-eye? IMG_0038

There are things he could do such as train bomb-sniffing dogs.  Got some out-of-control dragons?  He’s your man!  But not horses!  He prefers riding them backward and wonders why it doesn’t work out.  Not to mention, the helmet messes up his hair.

 

His flair for disguises is a definite asset.  Hugh Hefner and Phil Robertson never looked better.

 

As evident in his massive medical file, he holds up well under torture.

 

Waterboarding ain’t nothing but a thang.

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He has a problem with loud noises, though.  They scare him and hurt his ears.  So, unless you want him standing in the middle of the battlefield covering his ears some adaptations are needed.  Put a silencer on guns, artillery shells, tanks, grenades, pretty much everything you have; including drill sergeants.  I hear they get a bit out of hand.

 

Considering how much trouble DJ gets into at home, putting him in uniform in another country increases the chances of an international incident.  He has a knack for getting into questionable if not downright compromising situations.  Gambling, document shredding, and literally caught with his pants down are only a few of his transgressions.

 

DJ aspires to be the world’s greatest social media influencer.  Therefore, he requests his uniform have more of the NASCAR I’m promoting something vibe rather than the camo I’ve come to kill you feel.  He thinks it works better for his brand.  He suggests his uniform have patches for Culvers, UK basketball, Pizza Hut, UK basketball, Coke, UK basketball, Bath & Body Works, UK basketball, Ricky T’s Bar & Grille … well, you see where this is going.

 

Though DJ is a true warrior at heart and a Superhero even The Avengers envy, I must exert my guardianship authority over him and reject your offer of war.  Alas, the world is just not ready for my DJ.  (sigh)  But don’t despair, his brother Dalton is all signed up and ready to go.  Good luck with that!

 

 

 

Sorry not that sorry,

Joan Graves

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 Bullying, Holidays, parenting, Special Needs Kids, Winchester Sun Columns

Are You the Reason Your Child Was Bullied?

Yes, I see my glaring error.  No, I was not drunk when I wrote this.  Maybe, I can blame it on the holidays?  Once you get past it the column isn’t bad.  Enjoy.

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Posted in Education, parenting, Parenting From The Headlines, Special Needs Kids, Special Needs Students

You Can’t Drag A Child To Progress

Click here to view column

Posted in parenting, Special Needs Kids, The DJ Journey

Special Needs Dancing

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He May be nonverbal but he knows how to express himself. People wanted him to have a YouTube channel. So, here it is. The DJ Journey. Watch, like, subscribe, & share the silliness of DJ.

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 Church, Faith, parenting, Special Needs Kids, The DJ Diariers, The DJ Journey

The Vision of God

The vision was as clear as it was murky. The image was of DJ walking to the front of the church toward the pulpit. I could make out nothing more than the church had two aisles leading to a step up to the platform where the podium stood. That made sense because it was the exact layout of the church we were attending. What made little sense was that even at two-years-old DJ could not walk.

That vision, like most of the others pertaining to DJ, was given to me when DJ was the sickest. He was in and out of the hospital sometimes multiple times in a month. It was terrifying, stressful, and more than a little taxing on my faith. Yet, whenever I was about to crash God always came through with a vision of hope. He always showed me something that seemed impossible with my current circumstances but instilled profound hope that kept me pressing forward.

I have no explanation for why or when God chose to show me these future events. Not one of them occurred in the midst of fervent prayer. Instead, they came out of the blue. Sometimes I hadn’t even prayed specifically for what God showed me but the vision was an extension of my heart’s desire. That was the case with this vision.

I was busy trying to keep DJ alive. His inability to walk was a low priority. Obviously, it was something I wanted for him but in the big scheme of things, I just wanted my baby to live. I had the vision twice, first at home and then a few days later at church. Me being me; I came up with a reason for it. I determined that one day DJ would walk to the front of our church and reveal to us what God had been doing inside his nonverbal heart and mind.

Fast forward about 15 years. We’ve moved to a different city and no longer attend that church. DJ is walking, but he is still nonverbal. Though the vision was anything but forgotten, there was certainly no evidence that it was about to be fulfilled. But isn’t that just like God?

This past Sunday we were at a church we had only been to once. No one in that church had an inkling as to the vision I had so many years ago. But this church was one of the most loving churches toward DJ I have ever encountered. I’ve had pastors and others love and accept DJ. But the entire congregation at this church has such genuine love and acceptance it stands above all others. Knowing that I was still unprepared for what was about to happen.

Just before he was about to deliver his message, Pastor Rick approached Steve and me. He asked if it would be okay for him to take DJ to the pulpit with him. I’m not sure exactly what he said but something that indicated this was not his original plan. Though we had no idea how DJ would respond we consented. Rick turned to DJ and asked him if he wanted to go to the pulpit with him and DJ agreed. It was when Rick took DJ’s hand in his and they started toward the front that it happened.

IMG_1727In the blink of an eye that long ago vision came to life. What I had failed to notice before, was how much the sanctuary at Bethlehem Christian Church resembles the one at Hill-n-Dale where we attended when I had the vision. They are practically identical. I suppose since it had been so long since I had been to Hill-n-Dale I missed the similarities. But at that moment, it became clear.

The vision wasn’t of the aisle at Hill-n-Dale. It was Bethlehem. And DJ didn’t have to speak his testimony he was living proof of it. I don’t know why God made me DJ’s Mommy. I’m certainly undeserving of the task. I understand even less why God gives to me these glimpses of the future. The only thing I know for certain is that DJ is God’s instrument to reach an often cold, hopeless, and cynical world. But in the process of doing so, he gives me what I need to carry on each day. No matter how hard and painful it is sometimes to parent DJ, God provides me the exact measure of hope I need to carry on. And more love than I can fathom.

Pastors like Rick are far and few between. They may love the Lord, but understandably they are leery of anything that may disrupt their message. Rick invited DJ up with him not knowing how DJ would respond but accepting that if DJ took the limelight from him, it would, in fact, be Jesus stealing the show. IMG_1736

Posted in Autism Spectrum Disorder, Education, parenting, Sensory Processing Disorder, Special Needs Kids, Special Needs Students

After School Programs Fall Under 504

504 Plan VS. IEP (Individualized Education Plan) alphabet blocksI have seen a disturbing trend in public schools. Though I am at a loss to explain why some public schools are laboring under the misconception that their after-school programs are exempt from accommodation requirements for disabled students.  Administrators are informing parents that their student’s IEP doesn’t carry over to the after school program. That is somewhat true but highly debatable.

What is not debatable, however, is federal ADA law. Section 504 of that law applies specifically to the educational setting. It states that child care programs (including after-school programs in public schools) are prohibited from discriminating against a child with a disability by denying admission into the program or by denying requests for reasonable accommodations. Individual states have additional variances supporting this law but ADA is the federal guideline. It’s non-negotiable.

So, what should you do if your child is not receiving accommodations, has been refused entry into the program or been booted from it? First, send a letter to the principal, superintendent and school board members advising that you are invoking your child’s rights under section 504 of the American with Disabilities Act. Then clearly define what accommodations you are seeking for your child. Provide a date (I suggest a couple of weeks so they have the opportunity to get with their attorney) in which they must respond to your request. Also, make it clear that you will only accept their response in writing. If you are having to go this far to secure your child’s rights nothing they verbalize should be trusted and if you have to pursue it further proof in writing is worth its weight in gold.

If for some crazy reason they still do not relent, your next step should be a letter to the state board of education. Be certain to include a copy of the letter you sent to your local board of education. Since you can likely email them I would allow only a week for them to respond.

If all attempts have failed it’s time to call in the big guns, so-to-speak. ADA will fight for the rights of your child at zero cost to you. You will not have to hire an attorney to go to battle because the war is already won. It’s just the little generals on the ground who haven’t fully understood their role that cause the problem. You can file a discrimination complaint with ADA online. You will be required to jump through a lot of hoops, fill out mounds of paperwork and possibly pay to have papers notarized. But once that is done so are you. All you need to do is sit back and enjoy someone else caring enough to fight for your child.

Posted in Autism Spectrum Disorder, Education, Just for fun, parenting, Sensory Processing Disorder, Special Needs Kids

Feel the Sensory in Halloween

Science has proven that a multi-sensory environment improves brain function, language, social interaction, coordination and much more. Just as you arrange your food intake for maximum nutritional benefits, the same should be done for your sensory diet. The majority of us can exist in a day and get enough input to all of our senses to keep us balanced without having to actively search for ways to increase one sense or the other.

Individuals with sensory processing disorders, are on the autism spectrum or have other special needs, lack sufficient sensory input. The lack of an incomplete sensory diet can wreak havoc throughout our physical, emotional and intellectual state. With millions of  nerve endings sending messages to the brain about even the smallest tactile (touch) sense it is extremely easy to have a few crossed wires. Most of us can sift through the multitude of tactile stimulation without giving it much thought. Those with processing difficulty cannot. They either perceive too much stimulation or not enough.

Regardless of whether it’s a child with an over or under sensitive tactile system all children can benefit from a little tactile processing practice.  Halloween is the perfect time introduce your child to a sensory bin. The bin can be filled with sand, rice, water, flour, shaving cream, and even jello. Just go with the substance that your child will tolerate delving their hands into.

To keep the project affordable I purchased my bin and the contents at my local Dollar Tree. You can use any size or shape container you prefer. Mine is rectangular with a lid so I can safely store it away for reuse later. I filled the bin with rice then buried some plastic treat bag items in it.

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The goal is to have the child blindfolded, close their eyes or turn their head as they dig into the bin for the items you request. You want them to work on the sense of touch alone. Show your child an item then have them sift through the contents of the bin to find it.  I recommend having a couple of items that are easily identified. The ping pong eyeballs are easily recognized as are the tiny skull rings. Allowing the child to either start with one of the easy items or switch to them after missing an item or retrieving one that was particularly difficult gives them a much-needed confidence boost.

Only do as much as your child can tolerate. We want to push them a bit beyond their comfort zone but not to the point of a meltdown or where the activity isn’t enjoyable.  The more fun they have they less they care about the therapeutic aspect. As always, forget about the mess and enjoy the bonding time between you and your special one. Happy feel-o-ween everyone!