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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.

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.

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