Be the Ball for Special Needs Kids

The following post is another installment in our Dash of Dad special needs parenting series by Bob Williams, father of three children including Kyle, a special needs teenager. When he’s not parenting his three kids, you can find him creating sweet treats at the Dillsboro Chocolate Factory in North Carolina.

Encouragement is something that as parents we think we do routinely. Sometimes we do, and it is one of those little things in parenting which means so much to a kid—any kid and every kid for that matter.

For the record, I am not one of those parents who thinks every kid should get a trophy for just showing up or that we should not keep score at a kids soccer game. If only real life was like that, but it is not. And we need to teach our kids the virtues of winning and picking themselves up after a loss.

Be the Ball for Special Needs Kids at The Happy Housewife

Because we all know that life tends to give us more days about picking up ourselves after losing than basking in the glory of winning, at least it does for me anyways. This is where encouragement comes in. Again, a huge disclaimer here, I am not a child psychologist, but I have stayed in a Holiday Inn Express, and almost as important, I have been a parent now for 18 years.

Also, I am one of those kids whose parents, my dad in particular, found it difficult to show encouragement and love in a way that I wanted and needed it growing up. One might say I am a recovering kid trying to get it right with my kids. You know, it is one of those breaking the cycle kind of things.

My dad truly struggled with this, and I recall him saying, “Robert if I did not have you, I would have a cleaner garage,” (or a nicer stereo or something like that). I would try to fix something or build a model airplane, and when I was finished, my dad would often point out the flaws in my work. He was, after all, a quality control engineer, and thus he would bring his work home with him.

So when it came time for me to step up to the plate of parenting, I vowed not to be that kind of dad to my kids. I would be better than that, and I have found in some ways I am. But I also found parenting has its own pitfalls, and I too have made my mistakes and perhaps unknowingly handed down some of my own sins to my kids. With that said, my kids know two things are absolute: I am proud of them when they try, even if they fail, and I love them through it all.

When Kyle was born, my world was rocked in tragic way. I was facing life with a disabled kid who, at the time, I was told would be not much more than a vegetable. His entire occipital lobe was destroyed by meningitis. He was blind, well mostly blind, and had cerebral palsy and later developed epilepsy. When I found out the news of what had happened to him, I was devastated. Honestly, until somebody lives through something like a doctor telling you that your son had a massive stroke and his brain was destroyed, words simply cannot describe the horror and pain of that news.

In the days after that, I had to face my upbringing. My dad, while not the best encourager of the little things, made it clear that going to college was everything. He had 6 kids, and all of us had to go to college. Education was key in our home, and I recall my dad more or less making fun of folks who only finished high school.

So there I was with my son who would never go to college, never dream big, never build a model airplane, never do much of anything, and I was faced with a billion unknowns of a future that seemed so bleak. My son’s brain damage and him as a person came crashing against everything I was raised to be and value. A man is only as good as the sheepskin hanging on the wall. So what value would Kyle be when he may never talk or walk, I thought.

In essence, my dad was an educational snob to be honest about it, and I had a son who, based on the value system I was raised with, had little value in this world. I say this even though I went to church and all. I truly did not see the value of Kyle even in the kingdom of God. Pain has a way of blurring the truth about the value of the soul of another.

Be the Ball for Special Needs Kids at The Happy Housewife

Life is amazing, and sometimes amazing things happen in the tiniest of ways. One of my friends came to visit Kyle and us in the hospital. My friend Rafael has a daughter two years older than Kyle with half of the right side of her brain damaged from a bleed shortly after birth. Rafael stepped up and encouraged me about Kyle’s future. He encouraged my faith and hope, and told me that I could do this, that I could be the dad Kyle needed.

I cannot begin to tell everyone how his coming alongside of me in that time impacted me in such a great way. I was down in the dumps, and I had every right to be, but Rafael helped me see the value and beauty of my son like no other person could. See, Rafael got me on the road where I needed to be for my son, and since he walked the path ahead of me already, he was somebody I could trust because he had already been there. He passed some wisdom on to me in his encouragement: “I used to complain about not having any shoes until I saw a man with no feet,” he would say to me.

I plan to write a piece on just this wisdom alone. Rafael and his wife Elaine showed Tonya and me the ropes of the Part C program and encouraged us to get Kyle therapy as soon as he was discharged from the hospital. They were there in the early days walking along with us and sharing stories of raising special needs kids. We miss them to this day for sure, as we moved away from central Florida going on nine years ago.

So with a little help from my friends, a lot of praying, and a lot of tears, we picked ourselves up and got Kyle into physical and occupational therapy when he was about eight weeks old. One day as I took Kyle to therapy, when he was around 3 or 4 months old, I said to him, “Kyle, I love you. Work hard. I am proud of you, and you need to be the ball. Just be the ball.”

This is a line from the movie Caddy Shack where Chevy Chase’s character is trying to encourage a caddy to compete in a golf game, and he has this kid trying to putt. He keeps saying, “Just be the ball Danny, be the ball.” It is a throwaway line, and I honestly don’t know what it means. But since Kyle was about 3 months old, I have told him and his sister and brother this almost daily for 16 years now, before they head off to school or whatever, “You just got to be the ball.”

We had a couple of really good doctors along the way in raising Kyle, and they have all said that with special needs kids like Kyle, one huge difference maker in their outcomes is the parents. Parents make the difference in these kid’s futures. I am here to say I believe that, and I have tried to be the ball with all my kids, but especially with Kyle.

So if you are struggling with your special needs kids or not so special needs kids not diagnosed with anything, I am here to say that a little encouragement goes a long way. Showing your kids a little hope, a little love, and pushing them a little, even when you don’t know if it matters, does make a difference.

I am also here to say that kids know, even those that are trapped in a body or mind that does not work right, that it matters that their parents believe in them. When Kyle was an infant, we were not even sure he could hear us, and we were pretty darn sure his cortical blindness meant he could not see us. Yet there we were encouraging him and telling him to work hard at therapy and be the best he could be.

Sometimes just being there is enough and other times it is a kind word or a simple phrase like “be the ball” that is enough to make that connection—a connection of love, hope and a future that will be brighter. Don’t give up on your kids and really don’t give up on your special needs kids. You are your kid’s best advocate in life and encourager. I can say Kyle has defied the entire prognosis the doctors gave him as an infant.

The credit goes to a lot of prayer, a lot of work on his mom’s part, trying our best to not treat him as a crippled little kid, and letting the kid inside of him out in ways where Kyle is just another guy. He is far from a vegetable that the doctors said he was going to be. The boy loves life, he loves the outdoors, and he has taught me so much about the importance of being the ball myself. Go out today and be the ball, just be the ball.

This post may contain a link to an affiliate. See my disclosure policy for more information.

Special Needs Kids and Music

The following post is another installment in our Dash of Dad special needs parenting series by Bob Williams, father of three children including Kyle, a special needs teenager. When he’s not parenting his three kids, you can find him creating sweet treats at the Dillsboro Chocolate Factory in North Carolina.

Music. Music is the sound of the soul and human spirit put to math and rhythm. I would say it is uniquely human, but every animal that can sing does. Frogs, crickets, and birds all come together in nature’s symphony of wonderful sounds and songs, with birds being perhaps the choir of sky and trees. I love music, and it has been an integral part of my life during my grand times and low times.

Special Needs Kids and Music at The Happy Housewife

Back in 1976, my dad came home one day with a brand new Ford LTD station wagon. It was metallic blue and clear coat finished the long body of metal and glass. Inside, it had comfy velour cloth seats. Gone were the pleather seats, you know–fancy vinyl, of the AMC Ambassador wagon that our legs would stick to in the Florida heat.

My dad took that bad boy wagon down to Sears at the nearly new Altamonte Mall and had the auto center install the future of car audio, a Jensen 8 Track tape deck with Jensen 6 x 9 coaxial speakers, in the rear sides in the way back seat of the wagon.

That car took on us a nearly 3 week adventure from Florida to Nova Scotia and Prince Edward Island and parts in between. It was 1976, and we made stops in Philly and took in places like Valley Forge and Independence Hall and took in an air show at the Willow Grove Naval Air Station. This was I think the first or second year the Blue Angels started flying the A-4 Skyhawk because of the recent energy crunch. They were flying the massive gas hog F-4 Phantom, but I digress.

Anyway, we had five, count them, five 8 track tapes with us for this summertime adventure. The tapes were Neil Diamond’s 12 Greatest Hits, Queen’s Night at the Opera, Gary Wright’s Dream Weaver, The Sweet’s Ballroom Blitz, and John Denver’s record with Rocky Mountain High and Calypso.

I have three of the five on my iPod, and every time one of those songs pops up, the memories of that trip and growing up come flooding back to me. Memories of my five other brothers and sisters and my parents, especially my recently departed mother.

That is the power of song which can take us in a second from the here and now back to 1976. One of my few regrets has been never taking the time to master playing music. My kids play, and it is a joy to hear them. I just never have taken the time to learn.

When we started having kids, I made sure I exposed them to music from infancy. When Kyle was born and after the brain damage, we were not even sure Kyle could hear. Meningitis often causes lasting hearing loss to deafness in kids who get it. None the less, I had a CD player in his nursery. We would play music, and he would fall asleep to Mozart every night.

See, I read in my FSU alumni magazine that FSU did a study of kids from 1 to 4 years of age where they played various types of music over the course of 4 years, and they found that the kids who listened to Mozart in particular had increased brain wave activity in the areas of the brain which process math and science. They verified this with PEP scans of these kids’ brains.

Never the less, we played music for all of our kids. They heard it in our cars and in the home. Kyle was truly soothed by music. While the results of the hearing tests at Shands Hospital were often inconclusive as to what if anything young Kyle could hear at 3 or 4 months, we knew he could hear something because music played before bedtime or nap time or whatever would often calm him.

So we kept playing Mozart every night before bed on the CD player. Over time, it became clear that while the meningitis took most of his sight, it did leave his hearing intact. Slowly some words would come like “dad” and so forth, but not many. And that was okay, yet frustrating.

Special Needs Kids and Music at The Happy Housewife

But music, music seemed to always get his attention. His favorite toy is the Fisher Price school bus made in like 2001. It has a repertoire of the “Wheels on the Bus” song. Kyle loves this toy, and to this day, as I write this now, Kyle is playing with the
bus and humming along with the tune. It is very cool if you ask me.

Kyle loves music so much he gets mad at me when he is in the car and I want to listen to talk radio. He starts off in low and says, “music” and sometimes says, “music please,” and if I ignore him, he gives this emphatic sort of excited request for music to be played in the car. Ultimately he wins.

Kyle got an iPod touch for Christmas this year. I really wanted the 160 gig iPod classic, but alas, Apple in its infinite wisdom decided to no longer make it. So we settled for the 32 gig. As a side note, I have a goal to legally own over 5,000 songs in my iTunes library. I have the 160 gig classic, and I really wanted Kyle to have it too. For the record I am up to 3,600 songs from almost 190 artists.

The ipod is sort of like the cutting edge 8 track tape deck. As most know, we can now find the exact song we want on the iPod and even have it repeat if needed. Kyle wakes up every day wanting to take a shower, and in our bathroom, we have our iPod hooked up to a set of speakers. We put it on random and away we shower.

About 4 years ago, I noticed Kyle humming along and he would “sing” the words he knew. Sometimes it is right on time and other times it is delayed by a second or two. Either way he enjoys the music. One of my friends gave me some cool 80s remixed songs on CD, and it has that song, “What I like about you, you treat me right…la la la, hey it is what I like about you….” I don’t know the artist, but it was one of the first songs Kyle would sing along with in the shower.

Then I noticed Kyle really getting into “Fat Bottomed Girls” by Queen. He loves this song, and part of me wonders if it is because he is a raging teenage boy and they are singing about a particular part of a lady’s anatomy or if it is the beat. Maybe it is both. Either way, he enjoys it and sings with it, and the words he knows he sings.

He also loves “My City of Ruin” and “Land of Hope and Dreams” by Bruce Springsteen. In the song “My City of Ruin,” Bruce sings, “Come on Rise Up, Come on Rise up, Come on Rise up,” and Kyle sings along saying, “Come on, come on, come on.” He knows the first few notes to Jimmy Buffet’s “Grape Fruit Juicy Fruit,” and when he hears those notes, he starts saying the word suit. He loves the water, and his favorite suit is the one for the water and the boat coat.

Perhaps his favorite song of late is by the Royal Guardsmen, an English band from the late 1960s, which are yet another wanna-be Beatles kind of band, and they have the “Snoopy vs. the Red Baron” song. The beat of that song Kyle just loves. He is now asking for the songs by the words he knows, and he is so excited when we find them on the iPod and play them.

Special Needs Kids and Music at The Happy Housewife

Skipping around on my brain’s iPod of sorts, I have two more music stories to share. When we were living in central Florida, Kyle was attending an elementary school which had an IB or international baccalaureate program. They had a talented music teacher who would teach the classics to the really smart kids. They had a 4th grade violin group who learned Mozart and Bach and maybe Charlie Daniels too, I don’t know.

Kyle, as I pointed out here, loves music. It is the one class perhaps besides PE in which the boy would engage adults as a little kid. One day I was walking in the hall and stopped to talk to the music teacher. She was older, maybe in her 50s, and very proper. She was professional and nice, but distant.

I said to her, “Mrs. Smith (her name is changed to protect her identity), Mrs. Smith, I noticed my son sitting in the back of your class enjoying the music, and I wonder. Do you directly engage him?” She said she really did not have time. I said to her, “Sad, because out of all the teachers here at this school, you, ma’am, have the greatest ability to reach my son. I appreciate you taking time for the really smart kids by teaching them violin, but my son is moved by music.” She did not know what to say.

She started to walk away, and I stopped her again. I said, “Did you know Kyle falls asleep every night to Mozart? Did you know he loves Mozart? Maybe you could consider developing a music education program for kids like Kyle. Maybe you could take your gift and reach all the students, not just the elite students.” She was speechless.

It was in that moment that I started thinking about moving to North Carolina. I realized she really wanted little to do with the special ed kids, and I realized maybe she was afraid, maybe she was a snob, or maybe she just wrote those kids off like so many other adults tend to do.

I want to contrast this story with another one from Cullowhee Valley School and Mrs. Johnson, a Stetson music ed grad at that. Cullowhee Valley School is the school for the special ed kids K-8 for our rural county. They have this 3rd Grade Wizard of Oz play they do. It involves ALL 3rd graders, including the special ed kids. Mrs. Johnson embraced my son. She saw what music did for him, and I saw a light in her eye when my son was in her class. She is one of the best people and teachers I have ever met.

When Kyle was in 3rd grade, he was still battling sensory issues with clothes. He rarely sat still and did not often follow directions in class. He would pay attention but not always do what the teachers asked. Either he just did not want to do or could not do it.

Special Needs Kids and Music at The Happy Housewife

So Kyle was in the 3rd Grade Wizard of Oz and they had this butterfly wizard dance as part of the play. They dressed my son up like a dwarf looking wizard. He was wearing silky pants (major sensory issues), a weird silky shirt (more sensory issues), and top hat (super sensory issues). They had Kyle seated, and before him were the percussion chimes.

His role in the play was to play the chimes in a melodic way. They gave him a chime mallet or stick or whatever it is called, and he held it in his right hand. I went to the practice during the day and heard the chimes during the butterfly dance, but because of where I was seated, I could not see him. I just thought the scene was pretty cool.

That night I went to the full play, and when his scene came up, I had my camera and a great seat. That was when I started to cry. Mrs. Johnson had my son seated in front of chimes wearing clothes he hated and a hat to boot, and he started his chime playing when he was supposed to and played them well through the entire scene and stopped appropriately. I was stunned. To Mrs. Johnson’s credit, Kyle’s assistant, Grace, did a lot of the work too. I was immensely proud of my son, and while others did not notice his role as I did, I can assure you it was every bit as much work for Kyle to do what he did as it was for the little girl playing Dorothy to memorize her lines. Music, my friends, made this happen for Kyle.

If you have a special needs kid or the Not Diagnosed With Anything (NDWA) kids, I cannot emphasize enough how important music is to our species regardless of ability. If you are reading this and are a new parent of a special needs kid, get an iPod or similar device, maybe even an 8 track tape player for that matter, and play Mozart to your babies.

Get your kids involved in music in school and after school, in church or wherever. I am willing to bet your child could be reached by music in ways few other things could reach him/her. It has touched Kyle in ways I never imagined; fat bottomed girls make the rocking world go round….

This post may contain a link to an affiliate. See my disclosure policy for more information.

Winter Fun with Special Needs Kids

The following post is another installment in our Dash of Dad special needs parenting series by Bob Williams, father of three children including Kyle, a special needs teenager. When he’s not parenting his three kids, you can find him creating sweet treats at the Dillsboro Chocolate Factory in North Carolina.

I grew up in Florida, and growing up in Florida means lots of sunshine and warm weather, even in the dead of winter. All my kids were born in Florida too, and when they were young, we started coming to the mountains of North Carolina for Thanksgiving or Christmas break.

Sounds like a blast for the kids, and it was. However, Kyle was not a cold weather kid. If the boy had it his way, he would be in sunshine, nearly naked, on a boat or in the pool 24/7/365 in 87 degree weather. Kyle loves the water, and he loves the boat; snow and cold weather, not so much.

Winter Fun with Special Needs Kids at The Happy Housewife

So there we were on Christmas break when Kyle was 8 years old, and we were blessed with a snowfall between Christmas and New Years. We packed up the kids and headed to Soco Gap on US 19 and the Blue Ridge Parkway (BRP) where there is some good snow and sledding on the BRP clover leaf. We got the sleds out and the kids were zipping down the hill having a blast.

Kyle stayed in the warm SUV and we were coaxing him to get his shirt and winter coat on.

We got Kyle dressed and out in the winter air, and I took him down the hill on a long sled with me. He laughed and seemed to enjoy it a bit. So, I gave him a piggy back ride back to the top of the hill where the other kids were sledding. Kyle became determined to strip off his coat and shirt.

We got in an epic battle (you know, the kind where it’s your kid’s will versus your resolve as a parent) to keep his clothes on in the winter air. At some point, our resolve was not greater than Kyle’s, because unlike a normal kid, kids like Kyle have a steely eyed will that sometimes just can’t be broken.

Winter Fun with Special Needs Kids at The Happy Housewife

Sometimes special needs kids just need to learn the hard way, and no amount of reasoning or subfreezing air will matter.

There we were in the cold air, and Kyle’s cousin Glenna was up next on the sled, so we asked her to take Kyle down the hill with her. Now Glenna is Kyle’s age, and in a way her sledding skills were not much better than his.

The set up went like this. Glenna was on the back of the long plastic sled toboggan thing. Kyle was shirtless as Putin on the front part of the sled. There was about a 200 foot run down the slope of snow and ice. It was maybe 30 degrees out with low humidity and not much wind. What possibly could go wrong with this?

We shoved the kids off and down the hill they went. Then Glenna and Kyle hit a small bump in the snow, with the sled speeding along at 13.5 miles per hour, where upon the sled rolled over, ejecting its two riders (one being topless). Kyle was now chest down and racing down the hill for about another 10 feet, more or less body sledding.

We raced down the hill, and he was repeating the words done, done, done, cold, cold, cold. He had a series of nonfocal seizures, and we got him warm in the SUV. He was a little scraped up by the ice but okay otherwise.

We sledded there for maybe two hours more, and during that time, I checked on Kyle and asked him if he wanted to sled. One time he started to have absent nonfocal seizures at the thought of it all. I am not making that up here.

Then right before we were about to leave, I asked again if we wanted to sled. He said, “Yes, yes, yes.” I then said to him, “Okay, if you want to sled, you need to put on a shirt and your warm coat.” He said , “Yes, yes, yes,” in excitement and a new word – warm coat.

There are several morals of this story.

Some special needs kids, unfortunately or fortunately, need to experience hot, cold, pleasure, and pain for them to learn.

There are hazards to this of course. Kyle often learns experientially or by doing, not by simply being told. Sometimes with your special needs kids, it is okay to take some risks, to push them and challenge them.

Shorty before the sledding accident, I was chastised for letting my kid be outside in the cold air without a jacket on. They had no clue as to why he was outside without a jacket, nor did they witness the epic father son battle of the wills which lead to it.

Sometimes we have to let our special needs kids be kids.

They are not as fragile as we think.

Don’t give up on your kids.

I could have just let Kyle sit in the SUV while the rest of the kids where sledding. I knew he had fun when he went down with me, and I knew all he needed was to keep his clothes on and he would enjoy the ride.

Blind kids like Kyle crave vestibular input (motion input), and Kyle is a speed junkie. I encouraged him to get back on that sled, and he did. By doing so, I think I kept that toughness in him going and his determined spirit alive.

Don’t be afraid of being judged.

I took some risks and did some things that others around me, who had no idea about our situation, would never do themselves. If you have a younger special needs child, you can’t be afraid of being judged, watched, or sneered at by others.

Raise your kids, push them to live and enjoy life, and if the risks won’t put your child in serious danger or possibly worse, then take those risks, because life is worth living even for our special needs kids.

We now live in western North Carolina and Kyle knows when the weather cools off that he needs to put on his shirt and warm coat.

He knows when the weather warms up in the spring that he gets to trade his warm coat in for his favorite coat, his boat coat (life jacket). He knows that soon he will get to enjoy high speed rides on the tube behind the boat or a lazy tube ride down a mountain creek.

He no longer fights us while getting dressed to go outside. It all started with a sledding accident eight years ago on Socco Gap where Kyle learned so much in those never ending seconds sliding bare chested down across the packed snow.

This post may contain a link to an affiliate. See my disclosure policy for more information.

Guardians of the Galaxy: Family Movie Review

Occasionally I receive movies to review on the site. My husband, being a huge movie buff has happily taken on the role as chief movie reviewer for our family.

Here’s what he thought of Guardians of the Galaxy.

GOTG_Still_3

I didn’t think I would like this movie. I’ve never been huge fan of overtly comedic superhero movies. I enjoyed the Captain America movies immensely because Steve Rogers is the kind of man I want to be. The characters in Guardians of The Galaxy  are a rough band of self-described losers who initially come together because of shared greed. I wasn’t expecting much.

This movie surprised me. The action sequences were a lot of fun and the characters were interesting. The comedy wasn’t too juvenile (mostly) and didn’t cheapen the character’s heroics.

The whole group came together to serve a greater good and did, in fact, become the Guardians of the Galaxy.

All this good is leavened with a lot of sexual references, tightly clad female characters, more than a few gratuitous curse words and some excessive drinking of what seemed like alcohol. So, be forewarned.

If you can make it past that list, the story line involves the redemption of a band of criminals and assassins. Peter Quill is the de facto leader of the group. He spent his life with an organized crime group that abducted him from Earth as a child.

Rocket is a self-serving genetically-modified raccoon whose only friend at the beginning of the film is a sentient plant named Groot. Groot is an earnest character who seems to be the only genuinely caring “person” of the bunch.

Gamora is an assassin albeit a reluctant one. Drax the Destroyer is a man overwrought with the murder of his wife and family and is bent on revenge at all costs. These are your heroes. They are a lot rougher than Captain America or even the Avengers.

The storyline involves great danger to the galaxy in the form of a zealot who seeks to kill  or convert all who disagree with his beliefs. The guardians come across a powerful artifact that could be used to destroy an entire planet. Through a deftly woven plot, witty dialog and amazing special effects action sequences, the guardians must choose to either run or do the right thing. They redeem themselves by putting the needs of others over their personal safety and they do it over and over.

This movie is not a bible story and the heroes might was well steal from you as save your life, but there is a good message here –

Fight for what is right and protect those who cannot protect themselves.

That appeals to me as a former military man. I fought alongside some  pretty rough characters and they often rewarded me with salty language, but they always made the right choice and risked their lives for others. The movie is funny, exciting and, at points, moving.

The Guardians of the Galaxy is worth a family movie night if you are willing to talk to your kids about sacrifice and whether you have to be perfect to be hero.

Guardians of the Galaxy is now available on DVD and Blu-ray.

This post may contain a link to an affiliate. See my disclosure policy for more information.