Search

special needs dad chronicles

honesty, hope and healing for Special Needs Dads and those on their journey

Author

Mark Wallace Maguire

Mark Wallace Maguire is an award-winning author, columnist and publisher whose writing has appeared in dozens of magazines and newspapers. He is the author of the Kindle number one best seller series, The Alexandria Rising Chronicles for which he was named an Independent Author of the Year Finalist and a Georgia Author of The Year nominee. He is also the author of In Pursuit of The Pale Prince and the non fiction works, Confessions of a Special Needs Dad and Letters from Red Clay Country. He has been honored multiple times by groups such as The Associated Press and The Society of Professional Journalists. In 2005, he was named Berry College Outstanding Young Alumni of The Year. You can learn more about him at www.markwallacemaguire.com and www.alexandriarising.com.

One of my favorite moments of Special Needs Dads Conference South was at lunch. No it wasn’t the mere food that made my smile. Rather, it was watching a table of fathers so engrossed with talking with each other that I feared they would not have time to eat before we started the second half of the event. They were speaking fiercely. Notepads were out with hands feverishly scribbling on them. 

Conversation. Shared moments. Fellowship. 

It was exactly what I had hoped for when the idea for the event was envisioned in September 2019.

It’s been over two months since the conference. 

I’ve been meaning to write a follow up post since the evening the event took place. I had this blog piece roughed out, but a new job (which began two weeks before the event) and other deadline oriented projects hedged this to the side.

Then the Coronavirus struck. We’ve been sheltering in place for  a month and everything has been ripping along at a comfortable 150 m.p.h. 
But with this brave new world upon us, I can tell you that the vibrancy of that day has not been diminished in my memory. Only enhanced. 
I  can’t thank everyone enough. Our speakers who came and shared insight and experience and massive information.

Jim McCarten brought a tremendous amount of data and information critical to us as our children grow up. Scott Sowers, Martin Cowen and Ben Thames opened their hearts to us and Paul Batchelor shared his techniques and ideas on coping with behavior.

Our presenting sponsor Ignite, FCC not only served up the best coffee in Georgia, but did it with a welcoming smile and Heritage Christian Church which so graciously let us use the space at no cost. 
VertiKal Life Magazine and The Citizen gave us great media coverage. The Special Father’s Network provided free literature, books and the awesome coins you all remarked about so much. There were many other sponsors including Vicky Kijanksi, Frances Stewart, Jack and Linda Maguire, Shane Madden and Stephen Feather. 
I am looking forward to having a second conference in 2021 and will continue to keep this website up and running and its social media apps. 

But, what’s next, many of you have asked me. Is there a support group developing? An event for Special Needs Dads? Do you have a meeting planned? Are you going to make it a 501C3? have a board? 
That is in many ways up to you. 
What will you do? Will you grow a seed in your own community? How will things look a year from now? 
With our lives and communities in the special needs world as well as life itself in this pandemic, anything is possible. 

A Thanksgiving Day Prayer

 Dear God,

Today I pray for those of us who will travel long on little sleep. Who must explain to relatives why their child won’t eat. We pray for those who want to visit and laugh, but instead have to walk the halls or the yard or even take a ride in the car.

I pray that if something is meant to be broken it will be something unsentimental and cheap. That if someone’s hair is to be pulled it will be the least dramatic of the group and certainly, please God, not great-grandma when she only wants to give a hug. Most importantly, may any poop stay contained in the diaper and occur AFTER the meal.

Please let there be something our kids like to play with whether it be Paw Patrol or grandpa’s foot massager.

Please let our child do at least one cute thing that will make Grandma feel like her prayers mean something.

Please help us to be quick to forgive silly arguments, snide comments and well-meaning cliches.

And God, though this day may sometimes be hard, let us view THIS Thanksgiving through the lens of the surreal and of good humor – that any idiosyncrasies will be inside jokes and any horror stories will simply be a great story to tell our SN friends.

May this Thanksgiving be full of thankfulness, and peace and love- unconditional love- which is the specialty of people like us.    Amen

 

THAT’s WHAT SHE SAID: How to keep your marriage together under the strain of special needs

 

Keeping a marriage healthy and strong can be tough for any couple.  With the demands of work and out-of-control schedules making time for each other can seem, at times, impossible.  So how does a couple manage to stay together and happy with the added stress of caring for a child with special needs?  Here are ten steps that might help:

1)     Communicate:  From the beginning of our relationship, Special Needs Dad (SND) was insistent on the need for open and honest communication.  This was difficult for me.  I don’t like to hash out issues.  I prefer to think about ways I can fix them myself.  Also, sometimes when I feel stressed or upset even I can’t put my finger on what I’m stressed or upset about nonetheless talk it out with someone.  However, I’ve worked really hard to become a better communicator and that work paid off when A was born.  SND and I made the decision to be completely honest with each other without any judgement.  That led to some pretty dark conversations that we would never share with another soul.  But, it also cemented the fact that we have each other’s back.

2)     Pray for one another:  There is a quote by C.S, Lewis that reads,” I pray because I can’t help myself. I pray because I’m helpless. I pray because the need flows out of me all the time- waking and sleeping. It doesn’t change God- it changes me.”  I can’t imagine anything more beautiful than a man taking the time to pray for his wife and family.  It’s a humbling act that says, “God, I can’t do this all by myself.”   When a wife prays for her husband it tells him that his happiness, his future, his circumstances matter enough for her to beseech the Almighty on his behalf.  As parents of special needs children there are so many things that are completely out of our control and beyond our understanding.  But, as the Bible says, “Cast all your anxiety on him because he cares for you.”  1Peter 5:7

3)     Make time for each other: Making time for each other is not easy.  Not only is going out to a restaurant expensive, but babysitters for Special Needs Children are expensive and very difficult to find.  Going away on an overnight trip together is practically impossible.  We manage it once a year and it looks like we are going to have to find respite if we plan to do it this year since A is getting harder to handle.

4)     Overlook flaws and weaknesses:  Over the past two weeks our entire household has been sick.  Luckily, I got sick first so I could take care of the others when their turn came around. When everyone finally got better and made their way back to school and work I have to admit I did not use my free day to get the house back in order.  Instead, I went to Walmart.  And Big Lots.  And The Dollar Tree.  And Party City.  Are you catching my drift?  I let the laundry lay, the dishes soak and I spent the entire day running useless errands that could have waited and spending money that should have stayed in our bank account. After all that, my sweet husband sent me an Edible Arrangements fruit basket with a card that read, “Thank you for taking care of us.”  How does this man still love me?  Does he not realize there are women out there who have houses that are actually clean?  But, guess what?  He’s not perfect either.  Sometimes he says things that make me want to pop him upside the head.  He gets grumpy and unreasonable.  He snores.  But I still think he’s the sexiest beast on the planet.  Why?  Because I’ve decided to overlook his flaws and weaknesses and appreciate his heart.  I focus more on his good points than I do on anything negative.  And, I acknowledge that for every flaw he might have, I have at least ten more.  I remain perpetually grateful for his love.

5)   Have compassion: As a woman I tend to bear the brunt of most of this special needs stuff.  Most of us do.  We make the decisions about therapies and medicines.  We travel to the Doctor’s appointments and we sit through the IEP meetings.  It’s easy for us to feel like we are carrying the heaviest of the burdens.  I’m sure SND feels similar.  He is the one who had to pack away his dreams of moving up the career ladder, working in another state or country or accepting fellowships for exciting adventures overseas. He carries the weight of wishing he could fix this fractured life.  He might even feel like he wishes he could walk away from it.  So many do.  It’s not easy for any parent of a child whose future is uncertain.  It’s hard for a father to see a son who will likely never be able to provide for himself.  It’s hard for a mother to see a daughter who will never be asked to the prom or walk down a wedding aisle.  No matter how the scales seem to balance we must always keep in mind the hurt our spouse in enduring.  When SND and I got married we had the poem, “Cloths of Heaven” by W.B. Yeats read at our wedding.  It seems even more appropriate now.  It reads,

Had I the heaven’s embroidered cloths,
Enwrought with golden and silver light,
The blue and the dim and the dark cloths
Of night and light and the half-light;
I would spread the cloths under your feet:
But I, being poor, have only my dreams;
I have spread my dreams under your feet;
Tread softly because you tread on my dreams.

Tread softly, friends.

6)     Facilitate a relationship between your spouse and children: A happy family makes for a happier marriage. Date nights.  Movie nights.  A walk around the block.  Your children, special needs or typical, need the individual attention of mom and dad.  Mothers have a tendency to so encompass the life of their special needs child that sometimes it’s difficult for dads to forge a meaningful relationship. Mom, take a step back and encourage dad to spend some time with the SN child.  Whether it’s signing them up for an SN sports team or having a standing date to take the car to get washed.  And, moms remember that your typical children need special time with you.  It’s so easy for them to feel excluded when all the attention is on their sibling.  I recently went on a date night with my typical son.  It was kind of nice to go out to a restaurant, focus on just my typical son and I’s relationship and not have to worry about getting a babysitter.

7)     Do little things:  Being a caretaker is exhausting especially when you’re as disorganized as I am.  However, I still try to remember to do little things for my husband.  Sometimes I scrape the windows on his car on a cold morning.  I pick up a fancy beer for him to enjoy.  I let him sleep in on weekends.  They aren’t big things, but I think they remind him that I care.  And, for his part, he takes my car to get gas or to get the oil changed.  He brings me flowers.  Sometimes he even brings me chocolate which especially warms my heart because I think, “Maybe he really doesn’t mind all this weight I’ve gained? “ Never get so mired in the bog of duty that you forget to do nice things for your cutie.  You can quote me on that.

8)     Send them away:  Sometimes I look at my husband and say, “Go. On. A. Man. Night.”  It’s not because I don’t miss him when he’s gone, I just know that he needs some time away to gather his thoughts and repair his soul.  On the same note, he tells me to call my friends and have a girl’s night out.  Most of my friends (okay, all of my friends) are mothers of special needs children so we always relish having time to commiserate.  Oh, the stories we tell.   I’ll be honest.  SND never brushes my son’s teeth when I’m not at home to put him to bed.  But, what the heck. It’s one night!  And, in this case, absence really does make the heart grow fonder.

9)     Refuse to sacrifice your family on the altar of special needs:  Life goes on.  Your wife’s uncle is never going to understand what your life is like so don’t get mad at him when he says something ignorant.  Your special needs child might never get to go skiing, but that doesn’t mean your typical child shouldn’t.  You might want to empty the bank account to get your child an expensive therapy, but you still have to think about bills and retirement.  Life isn’t fair, but that doesn’t mean we should bankrupt ourselves or alienate the people who care about us or limit the actions of our typical children in an attempt to make things fair.  I’m not saying you should give up or stop fighting for your child.  I’m just saying there are a lot of battles to fight so choose wisely.  This is especially pertinent to husbands and wives.  We each think we know best what our children need, but do your best to stay on the same page and drop your sword when necessary.

10)  Take care of yourself: If I had my way I would eat donuts for breakfast, lunch and dinner and I might even take up cigarette smoking.  I would thumb my nose at God.  I would yell whenever someone made me angry and I would kick holes in the walls when I was frustrated.  There is something about being faced with an overwhelming obstacle that, I think, makes us want to give up on everything.

You can’t.

You don’t have to be perfect.  God knows I’m not.  But, the best way you can be a great husband or wife is by being a great you.  So, take care of yourself!  Eat better.  Get a hobby. (I’m still working on this one.  My hobby seems to be chocolate chip cookies and English dramas)  Find an outlet- writing, exercising, cooking.  Listen to NPR or a book on tape. Call an old friend.  Write a letter or make out a card and actually mail it.  Do something that has nothing to do with special needs and remind yourself that you’re interested and interesting and worthy to be loved.

God won’t give you more than you can handle and other myths people invented

 

Do you remember that verse in the Bible about, “God won’t give you more than you can handle.”

No, neither do I. You know why? It doesn’t exist. Yep. Just another quaint phrase invented by a Pollyanna well-wisher, a preacher to appease his congregation, a zealot to assuage rage or, perhaps even if I am more gentle in my judgement, just someone trying to help someone get through a hard time.

But, it is not Biblical. Kind of the like the old phrase, “every tub sits on its own bottom.” Sorry, folks. That is an English proverb. Not from the Bible either.

But, candidly, even if you take Biblical effort out of the phrase, “God won’t give you more than you can handle,” it is offensive, insensitive and callous.

Can you tell this phrase strikes a nerve?

Why is that?

When A was born and my world was turned inside out, the very foundations of reality shifted, my script rewrote, hearing a pithy phrase like this was enough to raise my blood pressure.

I wanted to yell, “That is complete bull! This is made-up Hallmark crap! I am hanging on by a thread. By an eyelash. And you, in your meme wisdom, dare to tell me some empty notion like this! As if this knee jerk phrase should be enough to make all right with the world.”

I never did do that. Not to anyone’s face, though I did nurse the grudge many times alone and have poured it out through the windows of my car while driving to work at times.

It is so patronizing. Like, “God gives special needs kids to special parents.”

Where did they come from? No one gets made for this. No one who comes into this sphere of being has a built-in switch they’ve been waiting to use called the “Special Needs Parent” switch. No, when we find out our child has special needs, that our child will never have a shot at ‘normal’ or living a typical life, we are shot up, beat and bent, and our emotions are twisted and our faith wrenched. We find no comfort or hope in a phrase like that. We don’t want to be special and, God knows, we never wanted our children to have special needs.

It goes hand-in-hand with the old saying, “I don’t see how you do it.” A phrase that is never a question, but a statement, perhaps of admiration, but it can drive one crazy. I mean, I have restrained myself for the most part and left with a, “we’re all doing the best we can,” but what I’ve wanted to reply is:

  •  You don’t see how I do it? I don’t know how I do it.
  •  You don’t see how I do it? Well, what are my options? Escape to Narnia? Push the pause button on life? Move to Mars? The ‘S’ word? 
  • You don’t see how I do it? Again, the divorce rates for special needs parents hovers around 80 percent and the suicide rate for special needs dads is much higher than average. Don’t tell me you don’t see how I do it. I really, somedays, don’t know how I do it either.

My apologies for the aforementioned sarcasm, but that is the way it is

So, there it is. My rant on this is over. Where does that leave us? What should you say to a parent of a special needs child? Sometimes everything. Sometimes nothing. We – and I say this collectively – don’t want to be pitied. We don’t want to be praised. We want – much like our children – to simply be accepted.

HONESTY: Lessons from Lazarus, Part I

One of the strangest passages in the New Testament is about Lazarus, one of Jesus’s good friends John 11: 1-44. Christ waits until after Lazarus dies to visit his family and, then, bring him back to life. I see the miracle aspect as I see many of Christ’s miracles – he was empathetic and if He had the ability to heal, by God, he was going to do so.

He healed the blind man. The sick child. But, the key point of this story I want to focus on is piece is the authenticity of the situation. When Jesus arrives at Lazarus’s home, he was greeted by many, but, according to most interpretations, he had to summon Mary. One can imagine Mary feeling angry, or forlorn. After all, where was this miracle worker, this savior, this one she had honored when her brother was sick? Why didn’t He come when they sent messengers for him? 

And what did Mary say when she saw him?

Did she praise him with hollow phrases or memorized salutations?

Did she say, “Great one, I have faith in you! From my brother’s death, your will is done!”

Did she say, “Our God is an awesome God! You are the best!”

No, she said, and one can imagine quite flatly or accusingly: “Lord, if you had been here, my brother would not have died.”

Wow. Period.

How did Jesus react? Did he strike her down? Did he admonish her? Did he tell her to be quiet or not to question him, his motives, his timing?

No, he cried.

There is something in that when it comes to truth-telling. Christ can handle our honesty. Our sadness. Even our accusations. That is stated throughout the Bible in different ways, but I find here it resounds with me on a matter-of-fact level. This is not David weaving poetry in anguish or Job questioning the very nature of the cosmos. This is a simple, almost stoic, accusation as Mary, in essence, says, “Where were you?”

And then the reaction. What did Jesus do? He cried. He did not preach a sermon at that moment. He did not tell her to rejoice. He cried. The truth is He cries with us. He is empathetic. He loves us. Even though there are mysteries that the finite mind cannot grasp, even though His Ways are not always Our Ways, He cares. And He is willing to listen. He does not strike us down for our honesty. We can tell the truth.

 

Brave New World

 

I have mentioned before, everything has changed. Don’t despair. You will make it. Everything is not lost, but everything has changed. How you eat. When you sleep. If you sleep. How you vacation. Your job. Your priorities. Everything.

An example is the familiar cookout. Old friends coming together over drinks. The jokes used and reused are still funny, but comfortable and comforting, like a pair of old slippers. The thick plumes of charcoal smoke shooting from grills. Children laughing and splashing in the pool. You can find yourself sinking back into your old life.

And you might try it once, but, ultimately you can’t go again without taking your new self with you.

You can’t go, because you can’t enjoy yourself. You find it harder to relate. The base of sharing is nil.

When your 8-year-old is not toilet trained. When you have to keep him strapped in a wheelchair so he won’t strike out or flail at another kid. When you have to constantly monitor him so he won’t hit his brother for the 1,000th time and you have to counsel that brother when he says he hates his brother because he has special needs, well, that makes it hard to hold your solo cup and nibble at your burger and engage in talk on football, or work or join in the last discussion on technology or pop culture.

Your world is not completely centered around your special needs child, but it is affected. Easy jocularity, complaints of having to change a one-year-old diapers and hearing about how someone loves Ricky Gervais (despite his disdain and condescension of the special needs population), makes it hard to engage or relax. You feel the ebb and flow of the conversation float over you and see yourself stuck on a sand spit watching it all. You can still fake a laugh, extend a hand and grab a cold one, but it is all a joke. And not a funny one. Because the joke is the event when everything with your child seems so terrible and out of place and the joke is how you feel inside which has the capacity to make you feel like a joke.

Only at the end of the night, when you are home on the couch and your family is in bed and the house is quiet can you relax. With the sound of stale laughter still in your ears, you swear to never do that again as you reach for solace in the bottom of a bottle.

 

True friends

You will learn who your true friends are. People will drop you like a bad habit when you have a special needs child. It is painful when they vanish, when their facade of an iron bond becomes nothing but a wraith-like illusion and their once-promising words of ‘always’ become empty . You will feel betrayed, sold out and hurt. You will learn deeper than you have ever before the raw meaning of the phrase, “Fair Weather Friend.”

But you will find new support in other places. Places you would not expect. And people you would never expect, or seek out or think about in a million years. Maybe not new “friends,” – bonds built on your past, shared experiences – but new allies, sympathizers, comrades and – dare I say? – selfless Christians. You will find them in church. In the grocery store. In the eyes of other special needs parents and one evening you find yourself having a conversation and a drink with another special needs dad of whom you have almost nothing in common with, except the strange alternative reality you both have inherited and live in. And, when that tends to define most of your paradigms, your time, your physical and mental boundaries, that is enough.

In the meantime, it can be overwhelming when someone reaches out with kindness. And beautifully, stupefying overwhelming. With that honest act of nothing to gain, just a desire to show you and your family love and comfort. When the neighbor you barely knows offers – though tentatively – to watch after your special needs child so you and your wife can go on a date. When a church member always make a point to kiss him on the head. When the couple you see strolling the aisles of the hardware store, stop you, ask about your child and – even with your defenses high and your tongue ready to unleash a torrent of insults – you become diffused as they relate about a grandson they have with special needs. They leave you with a smile, a prayer and bit of understanding. You find this person who doesn’t dress like you, talk like you, listen to your music or live in your world, loves you and loves your son unconditionally. And you realize and re-realize, bonds made over drinks and jokes are fun. But, bonds made through shared pain and hope and understanding and love supersede all.

You can read more about hope and healing here.

Sometimes, just say thank you

“Daddy,” A had walked up to the couch where I was relaxing with a glass of Ginger Ale on a Sunday afternoon.” Daddy?”

“Yes.”

“You know what?”

“What?”

“You are faithful.”

“Why do you say that, son?”

He look puzzled. Gazed into the space above my shoulder. Half-looked back at me.

“Because you are.”

Sometimes you take it. Sometimes you need to learn to accept a compliment, a piece of grace, a sliver of hope without asking why. Good enough is good enough. A has lots of these like, “God loves us,” or “I am glad you love me” or “I love you.”

Like I said, good enough is good enough.

Let Me show you what we can do, He told me…

We got the looks, could sense the un-asked questions.

“Was your wife drinking when she was pregnant? Did she use drugs?”

“What did you do for God to punish you like this?”

“What terrible sin or crime did you commit.”

The answer of question is none of the above. My wife drinks less in a year than I do on a weekend. We did the prenatal vitamins, took the ultrasounds, were beyond safe with any toxins. Nothing showed up. Anywhere. We just hit the reverse lottery. One in three children on the planet at the time known with this certain chromosome deletion coupled with a few other medical issues.

Why did this happen to A? To us? To his brother? To our life?

Beyond all, I have to cling to John 9:1 – 3. On the bleakest and on the brightest days, it gets me through.

1As [Jesus] passed by, He saw a man blind from birth. 2And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” 3Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.

Wonder at work in the eyes of a special needs child

This site addresses and confronts a lot of the darkness in being a special needs dad. But it is not all bleak. I believe there is some grace and peace and wonder and joy miracles not only at the end of everything, but also during the journey.

One theme that resonates with me on what a lot of us are missing in our lives is ‘wonder.’ It is a theme I will address at length at some point, but in relation to the world of special needs children, I think of Matthew 18:3, where Jesus said we need to be like little children to get into heaven. There is a ton in that one sentence, but the thing that gets me is ‘wonder.’ Little children have lots we need – and have forgotten – that we need to emulate: Openness, joy and wonder. We need to have wonder in our lives everyday. Cynicism and despair aren’t welcome. Worry is not welcome. Wide-eyed curiosity is.

One the things that A has taught me is grasping and regrasping that sense of wonder. I see wonder in the eyes of A and other special needs children more than anywhere else. Pure unfiltered joy. Excitement. Not eyeing the horizon, not criticizing the past, but discovering and rediscovering a sense of wonder in every moment. It will not solve all your problems, but learning that lesson from them is a blessing for this journey.

Let me show you what I can do, He told me

We got the looks, could sense the un-asked questions.

“Was your wife drinking when she was pregnant? Did she use drugs?”

   “What did you do for God to punish you like this?”

   “What terrible sin or crime did you commit.”

The answer of question is none of the above. My wife drinks less in a year than I do on a weekend. We did the prenatal vitamins, took the ultrasounds, were beyond safe with any toxins. Nothing showed up. Anywhere. We just hit the reverse lottery. One in three children on the planet at the time known with this certain chromosome deletion coupled with a few other medical issues.

Why did this happen to A? To us? To his brother? To our life? I don’t know, but beyond all, I have to cling to John 9:1 – 3. On the bleakest and on the brightest days, it gets me through.

1As [Jesus] passed by, He saw a man blind from birth. 2And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind?” 3Jesus answered, “It was neither that this man sinned, nor his parents; but it was so that the works of God might be displayed in him.”

I pray to hold onto that and to remember that this life and my purpose – real or perceived – is greater than myself.

Blog at WordPress.com.

Up ↑