There She Goes Again…

Random Rants from an Arizona Goddess

So I am a Special Needs Parent

Published by Just Me under , , on Wednesday, July 25, 2007

I've always pretty much known that my older daughter, Kaitlyn, has been a special kid.
> She cried non-stop pretty much for days just after I brought her home from the hospital. Colic and constant constipation and tantrums would plague the early years to follow....
> She was walking, no- running!, at 11 months old, well ahead of most of the other babies her age.... with a huge pregnant-again mommy chasing right behind her every step of the way as she dodged in and out of hiding places all the time.
> When she was less than a year old, she would meticulously line up her toys in order of size, and then freak out if you so much as moved them out of order or attempted to play with any of them without her prompting....
> I was always the one with the kid who couldn't/wouldn't sit still when you went out in public, bouncing on restaurant seats, pouting out loud about being bored and always wanting something other than what was being offered, and then would throw an absolute tantrum fit if you tried to leave, even though it was more than evident that she didn't seem to want to be there.
> She grunted and growled and spit and barked at teachers and other kids and was labeled as "problem child" and "unable to play well with others" early on.
> Now, she sometimes picks at herself, bangs her head on the desk or table and goes off into another world with a glazed look on her face if she's not interested in something or doesn't want to do something that has been asked of her.

All of these things pointed to one conclusion all along - Kaitlyn has special needs.
She is on medication that I feel is incorrect for what is really going on, but through the hassles and struggles of divorced parenting, her father and I are unable to see eye to eye long enough to seek out multiple opinions from the right people to get it straightened out. School life, though Kaitlyn is evidently articulate and intelligent, is a constant battle of missed assignments, daily behavior issues, and worries about whether another phone call is coming about something that happened that could jeopardize her inclusion in 'normal' school. Kaitlyn, herself, doesn't like that it seems that none of what is being done does any good. She tells me she feels like she doesn't have control, and she knows that she pretty much doesn't. She has a very, very difficult time making, let alone keeping, friends. All of this has been a difficult road for her thusfar, and is harder still on a girl her age - 11 years old - and fast approaching (the already difficult for 'normal' kids) teenage years.

And beyond all this, there are some very beautiful and wondrous things about my daughter, my firstborn, my blood, the first to call me Mommy....
She is honest to a tee.... She loves animals and has a way with them that reveals a huge and giving heart, despite her sometimes rough and seemingly selfish persona.... She sees life through an artist's eye - everything is vibrant, and colorful - and she is able to put pen to paper and create some of the most amazing drawings, even from a young age she was able to correctly define and draw the musculature of a horse in motion (her then favorite animal of all)... She is my first child - and will always have a special place in my heart for that at least, as well as the many, many other things that are unique to her....

But now I struggle again to find love for myself and to provide a happy and stable environment for my daughters on my own - Single again.
I want nothing more than to be a good example and positive influence in their lives. More than once I have had relationships with men, usually not parents themselves, who cannot find it in their hearts to be able to understand, let alone cope, with being around a child who requires such special attention - leaving me heartbroken and dejected. Hell, there are days I even wonder how the heck I can continue on as a parent on my own... even though their father and I share the tasks as divorced parents.... and be able to find love and companionship for myself despite my struggles...

So all of these challenges, I think, should qualify me, and other parents like me, as a "'special needs parent", if we were to be given a 'diagnosis' of our own. Shouldn't we have special ADA accomodations too??
As I have been especially reflecting on my role as a parent, mother, and woman (after yet another of the aforementioned heartbreak episodes), I have been searching for relief for my own struggles in handling ... reading up on new ways to handle parenting, let alone being a parent to a special kid like Kaitlyn ... and found the following excerpt with affirmations for the parents of these special kids... which I feel a strong desire to pass on and share, let alone keep for my own constant reaffirmation....... (I think I'll have to post them on my refrigerator at home or somewhere handy to remind myself from time to time that I have to take care of me too - not just the kids, the animals, the house, the men in my life, my friends, my family, and all the other 'obligations' around me....)

And for those who may not quite be able to relate because you're not a parent yourself -
I hope you can at least begin to appreciate the parents around you - your own parents, your friends who are so blessed to be parents, your coworkers who have to come and go from work to tend to familial obligations from time to time, leaving you to cover for them, the half-crazed mother in the grocery store trying to navigate a grocery cart and somehow manage to do the shopping all the while tending to a screaming, nagging child, etc., etc., etc....

(Feel free to pass this on... I'll be posting the excerpt in a bulletin too for ease in sharing and for those who don't take the time to read blogs)...

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TO THE SPECIAL NEEDS PARENT (AND EVERY OTHER PARENT TOO!) - KNOW AND UNDERSTAND THE FOLLOWING:


YOU ARE STRONG. How often has it happened — an acquaintance hears your story or sees your child and says, "I'm not as strong as you. I could never deal with all the things you deal with." And you shake your head modestly, and brush it off, and maybe even feel a little condescended to. But you know what? They're right. You're strong. You're facing things that the average parent doesn't even want to imagine, and you're handling them. Whether you were strong to begin with or had strength thrust upon you by necessity, you're one strong parent, one strong person. Your family needs that strength, your children thrive on it. You may wish you never had to be so strong. But appreciate that strength now. It makes you special. Capable. A force to be reckoned with.

YOU ARE AN EXPERT. "Listen to us. We're the experts." Doctors, therapists, social workers, educators — with their degrees and expertise, they may make you feel like your role in any discussion is merely to nod your head and sign off on their suggestions. But you're an expert, too. They may know everything about most children or the average child, but you know everything about the child in question. You have an advanced degree in raising your child, a textbook's worth of knowledge about his or her specific and individual needs and habits and progress and struggles. Because every child is different and differences determine treatment, yours is the most important voice in any discussion. There's no specialist more special than you.

YOU ARE A GOOD PARENT. There may be people in your life who would tell you different. Your discipline seems too strict, or too lax. You don't shuttle your child to all the right activities. You're not pushing her to be at the top of her class — happy and passing is a pretty good goal. Sometimes he acts up in church or melts down at the mall, and you feel those judgmental stares. You may hear that you're causing your child's problems, or handling them all wrong. But you know your child better than anybody. You know what works; you know what he can handle; you create an environment in which she can be successful. Doing what's best for your child, without worrying what others might think — isn't that just what any good parent would do?

YOU MAKE A DIFFERENCE. Your child's progress might not be that easy to see on a day-to-day basis, but when you reflect from time to time on how far he or she has come, give yourself some credit: Would that progress have happened if you hadn't been planning, praying, pushing for it? Everything you do for your child — every appointment, every therapy, every intervention, but also every smile, every hug, every conversation — makes a difference. But you're also making a difference in the world. Every time you give information about your child's disability to an educator, you make a difference for the next child. Every time you give advice in a support group or online forum, you make a difference for that parent and family. You are a force for good.

YOU DESERVE RESPECT. Goodness knows, you may not get it. There may be days when you feel Rodney Dangerfield had nothing on you. You may even decide that getting respect is not a battle you choose to fight, or something that's necessary for getting things done. But just because respect is not forthcoming doesn't mean it isn't due. You are deserving of respect for your parenting skills, your knowledge about your children and their needs, your tireless efforts on their behalf, your faith and love in the face of tremendous challenges. If there are people in your life — whether professionals or family members — who don't pay you the proper respect, know that the shortcoming is theirs, not yours. Meanwhile, make sure you're paying yourself plenty.

YOU TRY HARD. "Try hard and do your best." That's what you tell your children, and you're happy with whatever they're able to accomplish. You understand that perfection, or even an average level of achievement, is legitimately beyond their grasp, and you offer endless inspiration and encouragement. But how often do you give yourself the same credit? Parenting is hard work. Parenting a child with special needs is harder. You can't always know the right answer. You can't always make the right judgment. Mistakes are built into the job. Like your child, you will not always have the information or the ability or the skills necessary to perform perfectly. It's unfair to expect that you will. You try hard, and you do your best. That's enough. That's everything.

YOU HAVE A MISSION. Many people spend their whole lives wondering what their purpose is, whether they have a greater calling, something bigger than themselves. You don't have to wonder: You know the answer every time you look at your child. Helping your precious one reach his or her fullest potential — pursuing treatments, fighting for diagnoses, battling on behalf of your child's rights — can become a personal crusade, and a particularly fulfilling one. But even the little things, like helping your son through a hard day or a tricky homework problem, or finding a way to calm or comfort your daughter, are often enough to make you feel like you were put on earth for a reason. You need never ponder what your life is good for. You're a mom or a dad with a mission.

YOU HAVE SUPERPOWERS. So maybe you're not Spiderman (though wouldn't those webs come in handy sometimes?) You still have senses and abilities far more developed than those of the average parent. Your senses tingle when something is wrong with your child, long before anybody else notices a difference. With your X-ray vision, you see through inaccurate diagnoses and inadequate treatments; with your superior strength, you blast through red tape and past ineffectual bureaucrats to get your child what he or she needs; with your lightning speed, you swoop in to keep your child out of trouble. Like many a superhero, you can't always explain to mere mortals how you know what you know. But as Peter Parker himself learned, with great power comes great responsibility.

YOU ARE BLESSED. It may feel more like a curse sometimes, but having a child with special needs brings with it abundant opportunities for grace. It slows you down and allows you to enjoy the little things — a calm quiet day, a hard-won skill, a spontaneous hug, a pleasant conversation. Where other parents are driven to find their children's success in high grades and high scores on the playing field, you are granted the privilege of focusing on the things that really matter, teaching your children how to love and care and communicate on the most basic level. You know what's important, and because you're not caught up in trivialities you are able to appreciate that so much more deeply. Miracles happen every day, if you only know where to look for them.

YOU ARE RESOURCEFUL. You've had to learn how to do research and find information and get services and understand what specialists are talking about. You've had to improvise ways to calm your child down, help your child learn, get your child to sleep or eat or talk or use the potty. You don't wait around for the answers to come to you — you've learned through hard experience that if you don't go out and find them, nothing's ever going to get done. That makes you sort of a parenting MacGyver, able to solve problems on the fly with a mix of instinct, insight and ingenuity. Even when things seem most overwhelming, you start figuring out a solution, calling on all your resources — and you're quick to offer yourself as a resource when other parents need inspiration.

YOU DESERVE A BREAK. Even God took a day of rest. Yet you feel guilty if you allow any time for yourself. Sit down with a book, sleep a little late, stop for a cup of coffee, and that voice in the back of your head is liable to go into overdrive with alerts about all the things you should be doing, all the problems you should be worrying about. That untiring motivation and determination are a large part of your effectiveness as a parent of a child with special needs, but that doesn't mean you don't have a right — even a responsibility — to turn it off every now and then. You will be of no good to anybody if you hit the wall of mental and physical exhaustion. Charging up your batteries every now and then with some good old selfish "me" time helps you keep that spark.

YOU'RE A GOOD LEARNER. There have been many changes in your life since you became a parent of a child with special needs, and one of them has undoubtedly been your reading list. You plow through books on your child's disability or special-needs parenting, looking for answers and inspiration. Sometimes even books written for professionals will turn up on your night table. As much as you learn from books, you also learn from watching your child — what works and what doesn't, what causes a reaction and what stops it. Through your daily efforts at educating yourself about anything and everything that can help your child, you've earned a life-experience degree in neurology, physiology, psychology. And you learn something new every day.

YOU ARE GROWING. If there were growth charts for parents of children with special needs, the first percentile would represent shock, denial, doubt in your ability to handle such an overwhelming challenge. Maybe, at one time, you were off the bottom of that particular chart. But with time, you passed that first percentile, then the fifth, growing a little steadier, then the tenth, growing a little stronger. Somewhere around the 50th percentile, you found acceptance of your child's disabilities; around the 60th, the ability to enjoy your child's unique gifts. As you grow in knowledge of and advocacy for your child's special needs, you are growing in other ways, too — in patience, in tolerance, in spirituality. There may be plateaus and fallbacks, but your personal growth is nonetheless dazzling.

YOU ARE LOVING. But you understand that love means more than hearts and flowers and candy and pretty words. Love may be enough to move mountains, but it helps if you push, too. Loving your child with special needs means working, fighting, struggling, advocating, teaching, training, modifying, guessing, trying, trying again, analyzing, modifying, accommodating, managing, seeking, pursuing, researching, realizing all the many, many things you need to do to help your child and making sure they're done. There may be hugs and kisses and "thank you"s and ruffly cards and candy hearts along the way, or there may be frustration and isolation and heartache. But your love is stronger than all of that. And somehow, some way, your child will love you for it.

YOU ARE UNDERSTANDING. Maybe you never realized how important it is to have a truly understanding friend until you had a child with special needs, and found so many friends to be unable to reach out and give you the support you needed. Whether they couldn't deal with your changed circumstances, sympathize with your problems, keep from hurtful judging, or allow you child to associate with theirs, some of the people who were once important in your life may have fallen away because at the very deepest level, they were unable to understand. It's made you value those who are always there for you, unconditionally, without agenda. And it's helped you to be a much more understanding parent, family member and friend yourself.

YOU ARE TOUGH. Those wimps on "Survivor" have nothing on you. "Outwit - Outplay - Outlast" could be your motto, whether you're dealing with manipulative children, uncooperative educators, unresponsive insurance companies, unsympathetic family members, therapists who refuse to listen and doctors who don't seem to care. You stay focused, you develop your strategies, you form alliances, and you do what needs to be done. Because you are understanding and caring and loving, people may mistake you for a pushover. You may even prefer cooperation and compromise to force and subterfuge. But that doesn't mean you don't have the latter two weapons at your disposal. Your other motto? "Whatever works."

YOU KNOW WHAT YOU'RE DOING. Don't you? If not, you know how to make it look like you do. A little confidence goes a long way, and you can always fake it 'til you make it. The more you do, the more you realize that even the so-called "experts" are mostly just guessing and making it look good. Why shouldn't your guess be as good as theirs? When it comes to parenting children with special needs, there are no hard-and-fast correct answers and smart moves, and trial and error is a perfectly acceptable method for finding solutions that work. The only thing worse than making a mistake is not making an effort. So even if you're doing the wrong thing, you're doing the right thing. See? You did know what you were doing after all.

YOU ARE TALENTED. Maybe you can sing or dance or paint or write; maybe not. But you are talented in ways most people never imagine. With no particular training, you can calm an uncontrollable child, teach an unteachable one, create new disciplinary strategies on the fly and improvise therapeutic activities. Like a master playwright, you weave scenarios for games of pretend; like an award-winning actor, you teach emotions with facial expressions, motor skills with sweeping gestures, a love for literature with dramatic book readings. You may not be an artist, but you can instantly recognize the subject matter in even the most abstract crayon scribblings or stick-figure action. Your talent may go largely unheralded, but it's hardly unappreciated.

YOU HAVE GOOD INSTINCTS. You know what you know, and nobody can convince you otherwise. You may trust other people's opinions, but you trust yours the most, and when you've gone against your instincts you've regretted it. You understand your child better than your child understands him or herself, and that puts all the weight of decision-making and behavior monitoring on your shoulders. But you're up to the challenge. Although you may second-guess yourself, your first impressions are usually right on the money. You've worked to make that so, by educating yourself about your child's issues, filtering the words of experts through your personal experience, and learning from what works and what doesn't. You go with your gut, but your gut is golden.

YOU HAVE SOMETHING TO SAY. There are many who would prefer you to sit down and shut up (including, sometimes, your child), but it is both your right and your responsibility to speak up. Your perspective is valuable, and without it mistakes may be made, misunderstandings may abound, misinterpretations may stand. Speaking out doesn't necessarily make you popular, and getting people to listen and to take you at your word can be a challenge, but you know that the consequences of polite silence — for your child, for your family, for other children and families who have no voice — are far more dangerous than getting a reputation for being a big mouth and a troublemaker. Sit down and shut up? Sure — after you've given everybody an earful.

YOU ARE A REALIST. Say that like it's a good thing. You don't waste a lot of time agonizing over whether your toddler will get into the right college or your grade-schooler is getting enough science to succeed in med school or your high-schooler is making the right business contacts. You're more in touch with reality than that — you know that what really counts is whether your child is happy, and functioning, and moving forward. Whatever plans and dreams you may have once had for your child, you've been forced to replace them with ones more appropriate to his or her own personal abilities and interests, strengths and limitations. That's something every parent should do, but so many never attempt, often with heartbreaking results. You've gotten the heartbreak part over early.

YOU ARE INFORMED. It takes you by surprise sometimes how little other parents pay attention to the information and issues that you are so concerned with. You hear about kids falling further and further behind in school because their parents don't advocate for them; you look at a roomful of children and find yourself diagnosing problems that nobody else seems to even recognize. Others may think you're obsessed, but your children benefit from your efforts to know all you can about everything from their educational rights to the latest advances in medicine to trendy theories on learning and behavior management. Being informed helps you make knowledgeable decisions — and hold your own in conversations with smarty-pants professionals.

YOU ARE NOT LAZY. You can't afford to be. But because you put greater emphasis on your child's emotional health than on academic excellence, extracurricular activities, or a perfectly kept home, some folks may find your parenting insufficiently rigorous. You know better. You know that a day spent at home bonding over books or board games is more valuable than a day spent racing from event to event. You know that for some children, learning how to solve a story problem or decode a sentence can be as monumental an achievement as making the honor roll. You know that just getting through the day with no major disasters is a pretty big accomplishment right there. If that makes people think you're lazy, so be it. You save your energy for what's important.

~ Excerpt taken from Love Notes for Special Parents, by Terri Mauro - Source: http://specialchildren.about.com/od/needinspiration/a/lovenotes_3.htm?p=1, ...p=2, ...p=3, ...p=4, ...p=5 (spelling errors omitted)
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So - in parting - I admonish every reader of this blog -

Love the parents around you... And Love the parent in you
Try to step into the shoes of a parent for a while... Understand that you were a child once too (and some still haven't grown up or matured completely even into their 40s and 50s) and that your parents had the same struggles too, even if not to the advance degree that a "special needs parent" has per se.... Help them where you can - even if it's helping them to do laundry or round the kids up and herding the strays in a public place....

Every little bit of love shown to the parents, and to the kids, around us helps to build the community and generation of tomorrow, today.

1 comments:

Miss Beth and Carla said... @ 9/3/08, 1:48 AM

Right there with you, Sadie! It seems this is yet something else we share, except it's my youngest, not my oldest.

She was given a 3% chance of survival and in that 3% there was NO DOUBT in any of the doctor's minds she would be completely and totally handicapped for life--she would never speak, never walk, would most likely be blind and deaf. The original plan was for a 6 month stay in NICU before even being considered for the regular hospital nursery. It was also decided they would deliver her 2 months early as she was dying in utero.

Fast forward 13 years. The kid is playing soccer, playing softball (she visualizes her brother's head just before batting in bases loaded on her next home run), the health department would condemn her room (and let's not talk about her bathroom--ew), her grades are atrocious, the dog adores her, the cats run from her, she can see and collect baby grasshoppers, she has an iq in the 180's range and she is expert on getting on even her favorite teachers nerves. She just got braces and won't open her mouth. She delights in taking on bullies, even adults, when those bullies pick on her friends. She holds her own against her much bigger brother (who shared in the entire pregnancy experience and cussed out a nurse when he was three for messing with his sister).

She spent 1 1/2 WEEKS in NICU before being moved to the "regular" nursery, weighed 3 pounds at birth and went home 3 weeks after birth at 4 pounds 6 ounces. Cabbage Patch clothes were too big for her; my father scoured--and bought out--Vegas for clothes to fit her.

On the downside, she hit puberty at 9, PMS is obscene in my house, and she's bi-polar. She wrestled my former Marine brother-in-law and, even though he was trying not to hurt her, she pinned him to the ground in one of her fits of rage. She was 9 at the time.

Special needs? You bet. Would I trade any of it? Not a chance. She's no longer medicated--she was worse when she was. But she's mine and if I had followed the doctor's recommendations and aborted her, oh what I would have missed.

Hang in there Sadie--we're sisters in other ways as well.

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Why is it that we can find so many ways to communicate, that there is so much information out in the world, but yet, who really says anything important or worth listening to? Here, I (one of the many "Wonder Women" in America) join the masses in spewing forth random rants into the sea of intellectual spittle. Varied "editorials" about politics, relationships, sex, money, funny tid-bits, technology... you might find it all here.

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