From a blog: Meaningful mama
DEAR SPECIAL NEEDS MOM READY TO GIVE UP…https://lemonlimeadventures.com/dear-special-needs-mom-ready-to-give-up/
Dear Special Needs Mom Ready to Give Up…
I see you crouched down against the wall with your knees to your chest and your eyes red and swollen. I hear you. I hear your cries of frustration, your filtered screams for help through your gritted teeth.
I know how it feels. I promise I do. I know how right now you want to give up. You don’t think you can go one more night with things being thrown at you. You don’t think you can bear one more day of stares when your child has yet another meltdown in the underwear aisle at Target. You don’t think you can have one more fight with your partner, one more judgement from your parents, or one more missed playdate.
I know how warm your cheeks are right now. I know how fast your heart is beating and how the pain in your chest is literally too much to carry another day. I know.
I know that right now it never feels like it will get better. I know that makes you feel guilty, right? I mean, so many other parents deal with so much more. I know you are so tired of feeling like you should be stronger.
I know you don’t think you are doing enough for your child and yet you are sick and tired of the therapy sessions and the doctors appointments. I know right now you want to give it all up. You want your kid to be “normal.” You want a redo. Your brain hurts just thinking about all the places you have to be tomorrow, you just want to give up.
Mama, I know you hurt. I know how alone and tired you feel. I know, because I’ve been there. In fact, I wasn’t sure I’d ever get out of “there”. I have uttered the words “it’s not fair” more times than I can count and honestly, more times than I want to admit. I have screamed at the top of the lungs sounds that would make a lion scared in hopes that somewhere, someone would save me.
I’ve sat outside my child’s door and cried enough tears to fill a lake. I’ve hit my head against his door as he hits the other side more times than any parent should ever have to do.
I’ve been at the edge. The edge of losing my child. The edge of losing my other children. The edge of losing my marriage, my sanity… my “self”.
I’ve been there. More times than I really want to admit.
Here’s the thing, though. You can’t quit. You can’t give up. You aren’t allowed to.
Yeah, you read that right. You aren’t allowed to quit. You see if you give up, you know deep down no one else will advocate for your child the way you do. You know no one will love your child the way you do. You know no one will pick you back up like you do.
You are stronger than you even realize you are. You are already doing it. You are taking time for yourself, even if its just a short breather to turn off your mind and read something familiar. You are doing it. You are one strong mama! Now, its time to turn the corner and brush it off and get back up.
Want to know a secret?
You’ve got this. No, you’ve more than got this. You, my friend, were born with what it takes to get through this and not give up! Today might be an ugly day. Heck, you might not remember the last pretty day, but I know you’ve got this.
Want to know the best part?
You are not alone. That’s right. I have sat in the exact same place in the hall you are sitting in now. I have stayed awake many nights worrying how I’d get through another day. I’ve dug deep down and wondered if I had what it takes to persevere and get my child the support he needs. I’ve been there and so have so many others.
I know that doesn’t make it easier right now, but I want you to know you have a village out there waiting for you to find them. You have an army rooting for you and cheering you and your child on. You know why? They know what’s on the other side of this fight. They know it gets better. They know not all days feel this helpless.
They know because they have been in your shoes. They wanted to give up. They found their village and their drive and they persevered.
Just like you, mama.
Just like you!
Signed,A tired mama that’s been in your shoes.
Ps. Yes. It really does get better.
If you are at the end of your rope and you feel like you just can’t go any more, there is help! Here are a few of my favorite resources.
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UNLESS YOU ARE RAISING A SPECIAL NEEDS CHILD, YOU DON’T UNDERSTAND
Unless you are raising a special needs child, you don’t understand. The daily struggle is real. Try and imagine the work of exhibiting patience, discipline and love while a child presses into you with challenging behavior day after day.Note: This is an anonymous guest post. A reader wrote to me with her experience. It touched me and resonated with me. I decided to post it to share her experience so that other moms, struggling in the same way, might feel understood and not alone. UNLESS YOU ARE RAISING A SPECIAL NEEDS CHILD, YOU DON’T UNDERSTANDI went into parenting expecting one thing – anticipating normal. What I was given was not your average child with your standard needs. Instead I was given a child that would become a tool of refinement in my life.This little boy would struggle. He would make our family struggle. There would be marital fights surrounding his life. Worry, anxiety and anger would stem from his existence.Love would also come. Day after day. Through the challenges it would persist because love is a choice. I choose to love this child and raise him the best that I know how, but it doesn’t negate the pain that also marinates within.Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window.Standard parenting strategies work with my other children. Consistency and loving discipline are the key. Not with this child. This child doesn’t respond to time outs.He doesn’t respond to typical consequences.Spankings only exasperate the situation.Rewards do little to help improvement. New strategies are needed, and they are hard to discover and hard to implement as a united front. There is a lot of trial and error. Failed attempts at discipline are the norm. Defeat is a reality. Yet determination and love persist.Unless you are raising a child with special needs, you don’t know what it is like to yearn for normal. You don’t know what it like to wish your child could handle being on a sports team without causing destruction in his wake.There is a longing to be able to go to an amusement park or parade without anticipating a melt down. The crowds will be too much. He will get overwhelmed. He is going to lose it. “His brain doesn’t process the noise like other children’s brains,” I try to remind myself so that restraint trumps exasperation.You don’t understand what it like to ache for your child – to want them to have real friendships. I always anticipated a home filled with lots of friends and lots of activity. It’s so hard when you don’t see your child connecting with others. There is also the challenge of knowing that your child does need to experience consequence for his actions. Taking away play dates might be a necessary reality. If you can’t treat your family with respect and kindness, how can we trust you with others? You can’t yell at us all day and expect reward for that behavior. Unless you are raising a child with special needs, you don’t know what it’s like to try everything.The countless appointments to doctors, counselors, and specialists is daunting. Will this diet change his behavior? Did we find a supplement that works? Is the therapy making an impact? Do we have to medicate our child? The constant questions that bombards a mind is exhausting. The time, money and efforts of all, will it make a difference?Whether your child has ADHD, oppositional defiant disorder, sensory processing needs, autism or some other disorder that seems to be plaguing our children, as a mom of this child with special needs you live in a state of anxiety. I am constantly questioning whether I am too strict or not strict enough. Am I doing all that I can? What is the cause? What is the answer?The public meltdowns are embarrassing, and the looks of disapproval are heart breaking. They don’t know. They don’t understand the pressure you are under every single day raising a child with special needs. There is no way they could know the painful cries of your heart. What would our family look like if this child wasn’t there?How can I dislike my own flesh and blood?There is guilt for these feelings. There is a desire to flee. You never would, but you fantasize because the day in and day out is exhausting. It has changed you. It has changed your family.Unless you are raising a special needs child, you also don’t understand the determination. It takes perseverance to choose to show up every day.There is a lot of effort to chose kindness when you are filled with anger, joy when you are feeling defeated, and hope when you can’t see the light at the end of the tunnel. I am a mom. I will persist. That is just what we do. Defeat isn’t an option. Hope abounds. Love will triumph.
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21 Things Special Needs Parents Would Tell a Person Whose Child Just Got a Diagnosis
From the blog by Melissa McGlensey:
https://themighty.com/2016/02/advice-from-special-needs-parents-to-parents-with-newly-diagnosed-kids/
February 23, 2016
Getting a diagnosis you’re unfamiliar with, or one that comes with preconceived notions, is not always easy — especially when it’s your child’s diagnosis. Sometimes, the best way to gain understanding is to talk to those who’ve been there before.
We asked parents of children with special needs to share one thing they’d tell a parent whose child just got a diagnosis.
This is what they had to say:
1. “Stop. Take a seat. Now take a deep breath. Breathe out slowly. Now set your shoulders, you will have a lot of doctor appointments, therapists, possible surgeries and challenges ahead. You can do this, and you’ll never have to do it alone. We are here for you. We have been there. We will make it together. From one special needs mom to another.” — Nikki Lynn Nichols
2. “You’ll meet many amazing people you would have never met if your child didn’t receive a diagnosis.” — Jennifer Joy Brooking
3. “The ‘label’ is just a name for what is/has been going on with your child. He is still the same child he was before and you are still his parent. Now you just have a starting place to help him.” — Renee Healey Nilson
4. “Now that you do have a diagnosis you have the power to learn all the new ways to embrace the uniqueness that is your son or daughter. Make games out of therapy, learn alongside them what methods work best and ignore those that don’t help.” — Shannon Miskimen
5. “Receiving an unexpected diagnosis is not easy… Go through all the emotions you need to. Then pick yourself up, look at your child and be the parent you always planned on being before this diagnosis showed up.” — Ash N John Bricker
6. “Never give up hope, never settle for what they say your child will not do, always focus on helping your child strive to do everything they can and want to do.” — Tabaitha Delight Travis
7. “Find your village, your people, your support. This will be family and old friends and new friends and most importantly other special needs parents. They get it. You will need to call them, cry to them, complain to them, ask them to do your laundry. They will all learn to love your kids almost as much as you do.” — Katie Smeltzer Ireland
8. “My life is different from everyone else who does not have a child with special needs, [but] I wouldn’t change a thing.” — Suzanne Lee
9. I was told my son would barely talk, that he wouldn’t be able to understand simple conversations or that public school would not be an option. He’s a seventh grade honors student. Never let anyone push you into underestimating your child.” — Tina Williams
10. “You won’t have all the answers yet. Be proactive, learn. Your providers/teachers/team are on your side and they want your little one to succeed. And when you think your plate is full, get a bigger plate.” — Molly Russell
11. “Focus on what your child can do instead of only what he/she can’t. Stop to enjoy the ‘small’ things and celebrate every success/achievement.” — Gabriel Casanova
12. “[Your] child is not the file/condition. See your child as an individual. Keep your eyes and heart on your child and you will have the strength to do and be what they will need to help them succeed.” — Jenafer Bauerle
13. “Fight for your child’s health and fight for the help your child needs. Also, don’t lose yourself caring for your child. You need to take care of yourself. Remember you are your child’s best advocates and you can’t take care of your child if you neglect yourself. It’s OK for you and your spouse to have date nights, you need them. It’s OK to get a sitter. I remember putting my child to bed and having a candlelight dinner with my hubby and watching a movie on the couch. Sometimes date night are at home, but it’s important for the little things.” — Mellonie Swinford
14. “Though it may be hard, try to find comfort in the diagnosis. You have answers and knowledge… Now that you are armed with this knowledge, you can focus on the best ways to support your child, get the services he or she needs and allow him or her to realize his or her full potential, whatever that might be.” — Leslie Linn Brown
15. “A diagnosis does not determine your child’s future. No doctor can tell you accurately what a typical child’s future will hold, so don’t pay too much attention to all the ‘can’t/won’t dos’ that are attached to a diagnosis” — Kristin Thomas Cutlip
16. “If life was easy, where would all the adventures be? Embrace every moment… Look at your little one for inspiration on your ‘bad’ days; their smile, their determination will pull you through.” — Annemarie Chapman
17. “You have more power than you think. Be a strong advocate to assure your child gets what he or she needs in school. Make sure your IEP plan includes everything your child needs.” — Kelli Kerns Brockington
18. “Respect your feelings. Your feelings will be like a roller coaster.”– Rosa Valledor
19. “Always follow your gut feelings. If something doesn’t feel or sound right, keep investigating. Don’t let educators, doctors, therapists or anyone talk you into something you are uncomfortable with. Keep pushing forward; you know your child better than anyone.” — Bonnie Phillips
20. “Right now you are probably pretty overwhelmed… but I promise you will find beauty in this new beginning.” — Lorrie Ashcraft Stewart
21. “Love your child. Stand up for what your child needs whether it is in an IEP meeting, going shopping or eating out at a restaurant. Try to educate your family and close friends about your child’s diagnosis. Some may not understand. Many may never try to understand. Just love your child and never let anyone mistreat them. Remember, you are not alone. Join a support group. Make friends with other parents who have a child with a similar diagnosis. Lastly, take it one day at a time.” — Renae Lewis Murphy
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To Parents of a Child on the Spectrum,
I get you.
I feel you.
I understand you.
Isolation greets us many days but you'd never admit that fact out loud. Your body aches from being on top of your child's needs, triggers, warning signs, and calming tools.
You're in it 100%. You have conviction and know what you have to do every day. You believe with all the beats of your heart that your child's greatest challenges are indeed his biggest gifts.
I get you.
You feel secure, but you also feel vulnerable. There are many moments during the day when you feel like you're going to break, you feel ashamed, embarrassed, hurt, and you feel like there is not a single soul in this world who would get the situation.
Here is the thing, though; close your eyes, and imagine you're feeling the support of a thousand people. You are. We're here together even on the loneliest days. I get those moments.
…when you hesitate to move forward with a plan to meet up with friends and their kids…I am with you.
…when you do cancel a family get-together at an old friend's house because you can't face other families with “typical” kids…I am right there next to you.
…that fear your feel bringing your family to a get together will ruin everyone's time, or at the least, make others feel uncomfortable.
…when you regret the treat you gave your child.
…the stares you receive for allowing your child to use a device too often in places you never imagined you'd let him stare at a screen
…those silent head shaking back and forth from strangers not realizing how loudly you hear them
…that feeling of having no friends and no outlet because you don't have the time if you desire to stay on top of your child's life
…the visual schedule
…you realize it has been months since any friend has invited you and your child to their home
…you decide not to have the holiday party
…you cancel a dinner date with your partner
…the half hour by half hour schedule
…the sighs from doctors.
…the parenting your kids by your friends in family in front of you with the most prominent approaches that you know don't work with your child
…that sinking feeling that you're totally fucking up your child
…the sense that your DNA caused the pain for your child and your family
…the feeling that life without your child would be easier
…the sense that your child is ruining his siblings' childhood
…the feeling that you're not dealing with the stress well
…when your child spit in your face
…when your child bites you and the bruise to remind you for the next week
…when your child hits you
…when you almost call 911 because you're afraid of your five-year-old
…when you're holding your child after the rage passes, stroking his hair, kissing his head lightly telling him you love him and that you're there for him
…when you're holding your child after an outburst, and suddenly you feel like you're going to burst from raw, intense love for this small being who at that moment can only seem to stare out into what appears like nothing. You wonder where he is right now, and you hold him a bit tighter.
…when you stand in your child's empty bedroom filled with literally nothing to keep it safe for him and your family
…when you tell you seven year old to watch your two-year-old while you stand ground with your five-year-old
…when you realize, understand, and accept your child is negatively your marriage and your family life
…the feeling of absolute helplessness and desperation of texting your partner that you can't handle your child physically by yourself
…the guilt of your partner leaving work early to meet you on the side of the road because it isn't safe enough for you to drive with shoes flying at you and a child that refuses to stay buckled
…the feeling of watching your Pediatrician's eyes scan you and your baby as you explain his behavior. All eyes on you. I get it.
…when you know you know your child is not typical…I am right there.
I get you. I am here. Close your eyes. In those moments, especially, close your eyes. We will get through these moments and come out better, stronger, and more capable than we ever thought possible of ourselves and our children. Remember your child's challenges are his greatest gifts. Repeat. Your child's challenges are his biggest gifts. Repeat. Again and Again and Again.
I am right here.
Marnie
PS. Take a moment to join my good friend Dayna's (of Lemon Lime Adventures) Support for Sensory Needs group on Facebook. You will find not only tremendous support but also resources and a safe environment for your needs.
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