I had no idea what parents of special needs children experienced.
I was clueless. Probably insensitive and self-consumed. Until two years ago. When I found myself mama to three.
Many of you already know our story. I’ve shared bits and pieces online, here and on Facebook. It’s a long story, and a complicated one. The short of it? One day we were a family of five. The next, a family of eight.
Only it wasn’t that easy. Overnight, we launched into the world of Reactive Attachment Disorder (RAD), adoptive and foster families, kinship providers, and learning disabilities. A massive learning curve. I read multiple articles and books, shared countless conversations. Still, I felt overwhelmed and alone.
Then I found out I wasn’t. That the exhaustion and grief were part of the deal, and other parents were out there doing the same hard things, day after day.
For those of you who love children from hard places, this post is for you. I hope it makes you feel less alone. For those on the fringes, this is also for you. You asked, “How can I help?” Here’s my best attempt at an answer (P.S. Thank you for asking):
7 realities many parents of special needs kids need you to know (but won’t tell you):
- I’m not snubbing you. You know the messages I haven’t replied to, the appointment I missed, and the get-together that never happened? I’m not avoiding you. In fact, I need you now more than ever. But each day is an effort at survival. I’d love nothing more than to hang out and do life, to swap text messages and share cups of coffee. I need it. But I have zero margin. Forgive me. Don’t take it personal. And, please. Please. Don’t give up on me.
- I don’t always know how to ask for help. It’s tough to know what I need when juggling crises. Besides, my needs aren’t always of the casserole variety (although I’d take one of those, too). I need regular weekends away with my husband to feel like a wife and a woman. I need a RAD-aware child care provider to watch my kids. I need to research the impact of diet on behavior and then develop an effective meal plan. I need a child therapist who accepts insurance, a full day to fill out stacks of legal paperwork, and an advocate to communicate to educators (both at church and school) the dynamics of families like ours. These are big needs, maybe impossible ones. I appreciate your heart, but I’m not likely to ask you to meet them.
- My kids aren’t like your kids. Yes, I realize all kids have “bad days.” I understand children lie, steal, and get too physical on the playground. But don’t assume that just because your son screamed in the grocery store that our kids are the same. We have meltdowns almost every day. I’ve been punched, scratched, kicked, spit on. I’ve listened to screams echo off the walls of my house for hours, simply because I asked a child to hang up a towel. I know you’re trying to empathize and normalize, and I appreciate your heart. But “all kids do that” invalidates my reality. I want to feel understood.
- I don’t need your parenting advice. Maybe I do, but save it for a different time, okay? I’m already reading every book, watching every video, and researching every conference and expert. No one wants to succeed at this more than I do. But I’m maxed out with advice. And although I respect you, I don’t need you to fix me. I need you to be with me. In spite of the effort, I don’t always see the progress. That means, more often than not, I feel like I’m failing. I’m doing the best I can. I need you to see me trying. And believe in me.
- “Support services” are more imaginary than real. I’ve discovered a great chasm between the discussion of support services and the provision of them. Yes, the county and state offer assistance. But navigating the system is like trying to find a diamond ring in the bottom of the ocean. I’ve spent hours on the phone and online with nothing to show for it. Most times, it doesn’t seem worth the effort. As for the church, I love her heart for the orphan. Love the fact that “social justice” is hip and current. But, can I be honest? We felt quite alone once we brought our orphans home. Let’s find a solution, together.
- Some days I want to run away. Please. Let me say it. Don’t try to fix my feelings or rebuke me with “Children are a gift from the Lord.” I know that. But some days I need to mourn what’s been lost. I watch other families, the ones who seem so “normal,” and can’t help but wish for an easy day. I’m optimistic about the future, yes. But I have no illusions that my efforts will fix all things broken. This is bigger than me. So some days I want to run away. I’ll get over it. But, for today, will you listen? Without judgment?
- I’d do it all over again. I know you’ve seen the tears and frustration. We’ve been positive, but we’ve also chosen to be authentic. In all the transparency, I realize you might’ve misunderstood. So hear this: I’D DO IT ALL OVER AGAIN. It’s the most difficult thing I’ve ever done, hands down. But it’s right and good and beautiful. And WORTH IT. Every day I’m reminded of my “why” in the faces of these children I love.
If you’re a parent of a special child, what would you add or change? You have a voice, and I’m listening.
You have a gift! Thank you for sharing. I’m pretty sure I need to print this and keep it handy for “those times” and for “those people”. Hugs to you, the family and to God for picking you guys.
As do I! Thanks for the ongoing presence and encouragement, Stacy. YOU are a gift!
Michelle, I worked for two years for Intermountain Children’s Home, a place where children with RAD live and try to heal. I was a therapist to many of these children. My heroes were the adoptive and foster families and the kinship providers. It was awesome to meet those folks who gave the ones on the front lines those very necessary breaks so the could reconnect as husband and wife or just have some much needed down time. But I know what you mean when you say that you would do it all over again. It’s God-given work! Thank you so much for being there for those children.
Bless you for working with these precious children. They need advocates willing to work with them, those who don’t assume they’re “too far gone.” Considering your expertise, is there anything you would add to this post?
Hi Michelle,
I would recommend two great books as a start. “Parenting A Child Who Has Intense Emotions,” by Pat Harvey is great. I also used a book in therapy called “Treating Traumatic Stress in Children and Adolescents: How to Foster Resilience Through Attachment, Self Regulation, and Competency,” by Margaret Blaustein and Kristine Kinniburgh. I truly believe that the experts are those wonderful people who are with these children 24/7. What I did in one hour per week was minimal compared to what these wonderful heroes (like you) do every day. God bless!
I believe in you, and I believe in what you are doing. I can only imagine how hard it is every single day. But I know with all my heart that you are redeeming 3 lives, and I thank God for you, and for that.
I wish I could fix it all. We both know I can’t.
The one piece of advice (from John Rosemond, parenting guru) that held me through tough times was this. “If God, who is a perfect parent – had sinful children…what makes you think your results would be different.” That’s a paraphrase, but boy did it carry me. If God’s didn’t get perfect results with His children, I know He doesn’t expect me to with mine. So just keep doing your best, and pray God fills the gaps of the rest!
Bless you all.
I know you didn’t write this for a pat on the back, but I’m going to give it to you. What you and Troy have done the last few years is outstanding. I wish I was closer to help more than dropping off plastic dishes, but know prayers go up for you all the time. Love you guys and love those kids!
Thanks for writing this. It is wonderful. If it were my personal list, I’d only make one change. You can make me a casserole. That is probably the one thing you *can* do. If I don’t have to make supper, it is one less thing for me to worry about.
You’re absolutely right! In fact, if anyone wants to bring a casserole this week … 🙂
Michele,
Beautiful words my friend. I have no idea what you are going through but I am with you in whatever way you need. And thanks for sharing your heart with me and others. It is a BEAUTIFUL heart. Love you.
Oh, Michele! Thank you & God bless you!! I’ve been in education a long time & my specialty is working with children & families with special needs & while I thought I “got it”. I didn’t really get it. These past few weeks have been truly eye-opening, heart-wrenching, exhausting, overwhelming… & yes, I’d still do it all over again! What would I add? Yes, you CAN bring me casserole. One less thing.
None of us really “get it” until we’re in the thick of it. I didn’t either. The first weeks/months are the toughest. I wasn’t sure I’d make it. But you can do this, Coco. One day at a time, one day at a time. And if you ever need to be reminded that you’re not alone, you know where to find me. 🙂
Great list, Michele! Thank you for speaking up for our community (And welcome! It can suck, but it also blesses).
Haha. TRUTH. 🙂
You are authentic. You are real. And you were indeed literally plunged into ice water—it’s a shock to the system. What might I add? You are keenly perceptive and your heart screams your love the Littles. You are right on. And as much I’d like to encourage you differently, I, too, am authentic—with love. It doesn’t get “better”. It gets different. Your strength is truly found in the Lord and in the what you allow others to pour into your bucket. A heart that grieves and accepts what “is” can be a powerful first step. It’s not easy. You love them. You want the world for them. And yet, you are exhausted. You are scared. You are angry and confused. Your heart grieves the idea of “normal”—both for you and for them. And yet, you drag yourself out of bed each morning, when His mercies are new, and you seek His help to get through another day. This doesn’t depict a lowly life, but instead a life filled with Christ. We, His children, also have many special needs. You model Christ’s love to these children. And you do it well!
Back to the heart that accepts. My friend, help us to help you. No, you won’t ask. But help educate us. And accept when we offer. We may not be as savvy as we could be, but we’ll sure try. Help us understand how not to undo your efforts and support your direction. Help us know how to best be with you.
Michele, you are dead on with your thoughts. It’s a salty/sweet combination. Your feelings are raw, real and dare I say, justified. All of them. You are amazing in your quest to be all that you can be to these precious orphans of God. And you are doing it well. You may rarely see the impact, but from the outside…trust me. It’s there.
• And, please. Please. Don’t give up on me. Never! Just know that I am always a text or call away. No questions asked. No advance notice needed. No mask necessary.
•I appreciate your heart, but I’m not likely to ask you to meet them. They are big needs. And no, you don’t ask. But accept when offered. Do your best to reach out before sinking. And we’ll work to keep our eyes on your bobbing head.
•I want to feel understood. Of course you do. No one can fully understand your reality as you live it. Regardless of our experiences. But we can listen. And we will.
•That means, more often than not, I feel like I’m failing. I’m doing the best I can. I need you to see me trying. And believe in me. I hear you. And I respect, admire and believe in you.
•We felt quite alone once we brought our orphans home. Let’s find a solution, together. Amen.
•But, for today, will you listen? Without judgment? Indeed. Today, tomorrow, next week, next month….
•Every day I’m reminded of my “why” in the faces of these children I love. Again—amen.
Love you, my friend!
Powerful, needed, sharing with everyone. Love you oodles, stand in awe at the task you and Troy have undertaken and how amazingly well you are doing in circumstances most of us cannot begin to fathom.
AMEN! This counts for kids with health issues as well……I’m tired of hearing “If you’d just have faith….” Who are you to say that I don’t have faith? You aren’t inside my head…..God may chose not to heal my daughter, and I will have to learn to live with that too!!!!
Thank you for sharing this! 🙂 I am excited you will be back at the Cowgirl Get Together this year. I hope to spend a little more time getting to know you better in person! 🙂
Hey Michelle,
Thanks for being vulnerable and honest. This is a hard path. One that is so costly. As an adopted son, and an adoptive father, I want to just speak to you from the distant future, when your adopted kids are adults. The path getting there will be difficult and painful no question.
But there will be a time when they will say to you, “Mom, thanks for being strong for me when my world was insane. Thanks for sticking with me when the story I believed about the universe was that I was alone, and that I was alone because I was unwanted, unworthy, and broken. In your weakness and limited resources you embodied the words “I will never leave you or forsake you” and that has forever changed my story. I know that it was hard, maybe the hardest thing you’ve ever done. But your heart was life to me.”
Marc, such wisdom. Great words.
So well said, Michelle. I applaud you for sharing your heart and calling us all out on how we could be a better friend to parents of kids with special needs. (Whose needs most times don’t feel so special — at least for us, especially when you feel isolated and judged.) I love you, sister, and I love this post!
Oh, Melissa. I know you understand. You’re a good mom, a good friend. Thank you for cheering! Love you right back.
Love this!! I am right there with you. Love you, and love your heart.
Please let your followers know that MANY stepmothers feel that same way as you even if they don’t have the same disorders or disabilities to deal with. Especially the statement on “I don’t need your parenting advice”. I can’t count how many times a biological family (mom or dad) tried to tell us how to deal with step children in our ‘blended family’……including how to deal with ‘x’s’. I’m sure they meant well but until you are placed in a stepfamily dynamic you have NO idea what goes on.
Thank you SOOOOOOO much for being transparent and vulnerable. I can’t wait to meet you and spend time with you even if it’s not this side of heaven……….I will someday!
God Bless
Yes, Mickey. I’ve been in your same situation and understand exactly what you’re saying. In fact, in many ways, it’s those difficult stepparenting years that gave us the outside-the-box skills to tackle what we’re facing now. Thanks for sharing your heart and perspective. We have so much to learn!
Hi Michelle..love your article. Very well said. I can relate to all you have put on paper. I did and am still doing all you have voiced and are doing with your little ones. My reality now, is I am on the other side now. The side where my special needs son is considered an adult. I am worn out, and the sad part of this journey is I have become bitter to what I selfishly have lost in the past 20 years of MY development and MY accomplishments in this worldly world. I am still a stay at home mom, who feels trapped in her own home wishing of a life more than what I have. The battles continue with the filling out oodles of paperwork to gain guardianship and SSI. I have a son who is not readily accepted into society, because he cannot use the appropriate social skills needed to be accepted or be understood. I have fallen into the pit because I am worn out from all the battles of fighting, waiting for that miracle and plan God has for my son. I still hang onto my faith, read His word, and function in society with reserve and unhappiness. Waiting on God. But as Sarah Young wrote in todays devotion in Jesus Calling..”You have been on a long, uphill journey, and your energy is almost spent. Though you have faltered at times, you have not let go of MY hand. I am pleased with your desire to stay close to ME. There is one thing however, that displeases ME..your tendency to complain” OUCH!
You have a wonderful outlook on life Michelle and you and Troy will do wonders for your little ones. I pray for strength and humor to continue to saturate your family!
Carol, you have walked such a long and difficult road. I’ve watched you love your son, advocate for your son, and tackle a near impossible learning curve. You DID IT. You gave it your everything. I’m so proud to call you my friend. One more little note: it’s okay to grieve. You’ve lost so much in the giving of your very life. God loves you, honors your devotion, and will walk you through this next part. Did I mention how proud I am of you????
I loved this article. I’m adopted and and adoptive mom. My son does not have RAD, but he does have Asperger’s, a type of autism, so most of what you wrote resonates deeply with me. I am going to share this with friends, both those who can identify, like the friend who adopted 5 older kids from Russia and now facilitates a support group for adoptive parents of similar kids, and those who don’t know my world.
I hope it becomes a good conversation starter for you, Deborah. That’s where healing begins—in community! We all need each other.
Thank you for this – I have shared and shared it. It is so beautifully put. And REAL! I just sent an e-mail link to the ESE director at the local high school. I really feel this should be required reading for ALL parents. Thank you Michelle for living your life out loud and being willing to be so honest. It is uplifting and inspiring. We all just simply want to know that someone gets ‘it’ , whatever your ‘it’ may be. Blessings!
Thank you, Danita. I’m so grateful for your willingness to lead the way like this! Sharing information with other educators and parents is an important step. (P.S. You’re absolutely right. We want to know that someone gets it. Thank you for doing that today.)
Michele,
Love this piece so much!!!! I am a mother to a dear son, Ryan, age 10, with Prader-Willi syndrome. What is that???!! Yes, I have heard that before. I GET everything you wrote. Thank you for writing it.
I wrote something too for all special mamas out there—if you would honor me by reading:
“A Raw and Honest Love Letter.”
http://jessicapatay.wordpress.com/
Hi there, Jessica. Thanks for telling us about your boy! And for sharing your post. Writing is like therapy, isn’t it? Helps us process the overflow of all we cope with each day.
Jessica, our little girl has the same, she is 4. It is such a daily struggle. She even tries to eat the cat! Never in my life did I think I would say, “stop eating the bus!” Maybe you can give me pointers. Rcfav@sbcglobal.net thanks catherine
Well said. As an adoptive mother of twins with autism, a biological child with bipolar, and a former foster parent, I do get it. I do, I do. I know what it’s like to feel like you’re drowning alone in a sea of judgement and constant stress.
I do offer some advice here: you must, you must, you must find a way to take care of yourself and your marriage and typical children. You must find a way to refuel. Do whatever it takes. Because if you’re not careful, clinical depression can set up house before you even recognize it.
I speak from experience. As a pastor’s wife of 32 years, I’ve had more rejection and misunderstanding from “church folks” than I care to remember. But God does understand and He does know the remarkable effort it takes to live the James 1:27 life.
People just don’t know. And when you’re in the thick of it, it’s hard to remember that they are simple and ignorant just as we were before we were in the trenches. Some days it’s all I can do to pray, “Father, forgive them, for they know not what they do/say/feel.”
Still, you are not an island and it’s not reasonable to think that you are able to do this alone. It is wise to seek for help any way you can get it. Easier said than done, I know. However, whenever I’ve prayed, “God, I really, really need a helper here,” He’s never failed me.
Still, if you’re up for running away? Make sure to give me a call! I’m going with you! 🙂
I love you, Michele! Wish I was nearby to bring you a cup of coffee… (I’d say food but I’m pretty sure you don’t want my cooking!)
Many years ago, I was blessed enough to have you share your story with me… I thought you were fabulous then. I think so even more now.
Thanks. Its good to know that there are people in the world who understand. I’ve adopted 6 older kids and dealt with everything from rad through bi polar. Not easy but like you I would do it again in a heartbeat. My kids are now grown and i can’t imagine my life without them.
SIX. And they’re grown? And you’re still alive? 🙂 Your example inspires all of us. Thank you, Robert.
I do not expect people to understand, just please don’t judge me and my parenting techniques. My kids do not respond to discipline the way most children do. My kids have very primitive coping skills ” fight or flight”. We may know and be able to avoid many of the triggers but a hyper sensory child can have a total melt down over something that you or I may not even be aware of; dripping water, the clock ticking, a flickering light or a tag on a shirt can send a child into a whirlwind of out of uncontrolable emotions. I can relate to everything in this article…..If I could have one thing to change besides what I’ve already written is, just once it would be great to be able to get what my child needs without a fight.
EXCELLENT addition, Robin. It seems every time we try to advocate for something (with educators, social workers, etc.), we have to fight for it. I know they don’t mean it, but behind the wrestling, we end up feeling distrusted, like we don’t kno what’s best for our kids. Thanks for you wise words!
Amen! It is tough and exhausting and people have no idea. I love my children with all of my heart. It is hard not feeling loved back… I would do or all over again too!
Yes, true. People have no idea. Except for those of us doing the same thing. We’re with you, Chris!
Wow. I have several friends with special needs kids with whom I shared this post. Thanks for putting it out there. And thanks for loving on your kids. That is huge. 🙂
just wanted to say that I LOVE YOU. very much.
<3
I totally and completely understand, and you are not alone. My family has also been turned upside- down and crazy by RAD. Seven years ago now, although we didn’t understand what was going on for a long while. And guess what? The good news is I am {slowly} becoming a better person. More like Jesus. Got a long way to go, but I know He set me on this journey to get me where He wants me to be. By the grace of God, our RAD daughter is healing, and I have hope that our son will someday follow. There is always hope. Please, please read this: http://lisa-overcomingmyself.blogspot.com/2011/07/to-mothers-of-unattached-children.html. You are NOT alone.
Thank you. Just thank you. I want to go cry my eyes out after reading this post. Home with my daughter from a Chinese orphanage for 1 year and 4 months. I thought this second year home was supposed to be easier and it’s been nothing but a nightmare. My daughter has extreme control issues, sensory processing issues and screams most of the day. I’m so tired. I do want to run away. Unfortunately for me, your #7 above does not apply. Given the chance, I wouldn’t do this again. Too painful for her and for me. So sad.
I’m so sorry, Brooke. I have no words. Wish I could hug you! I know how even an hour of screaming really gets to me. I have no doubt you’re overwhelmed and discouraged. It makes perfect sense, considering ALL your dealing with.
It wasn’t until more than halfway through the second year that we started to feel like we were adjusting a little. Just a little, but it felt like we’d gotten over a little hump.
Have you heard of Karen Purvis and “Empowered to Connect”? Her resources have been a huge help, both practical and encouraging. Here’s a link:http://empoweredtoconnect.org/
Thank you for being honest and courageous. I’m with you.
A big hug to Brooke. I agree with Michele–thank you for being honest and courageous. You’re not alone, Brooke. Keep reaching out….
Jenn
Thank you! I’ve tried to help people understand our family and me for five years now, I sat with tears reading this and choked up reading it to my husband. Finally someone ,who truly understands my struggles! Thank you! Blessings Catherine
You expressed my thoughts perfectly. Bless you!!! It is sooo hard and yes many days I would love to run away. We are sisters for sure! Only those who walk our shoes truly get it.
Thank you, Susie. It’s such a relief to know others understand … not just “pretend” to understand, but really get it.
My sons 25 years old. He’s always been “special”. He’s been diagnosed with Paranoid . At the age of 19. Glad im not the only one. I feel like, nobody else is going thru this
You’re definitely not the only one, Tammi. We’re with you.
I am a mother of 2 special needs children. My 13yo was “diagnosed” with cp a week before his first bday. In 2006 we were told he doesn’t have cp… and we have had test after test after test trying to figure out what he DOES have. Still no answer… My 9yo son was diagnosed with ADHD and ODD November 2011. Ive known for a long time that there was was something more than just a “rowdy” boy. He was down right defiant about everything. Major meltdowns over the simplest things and I just didn’t know what to do… until finally he was diagnosed. He is doing much better on the meds that have been prescribed for him, but we still have an occasional day that the simplest thing can set him off in a rampage.
All in all, I love my sons and I would not trade them for the world. They each have their own personalities that just melt my soul. And we just keep on keeping on. Maybe one day we will get a diagnosis for the older one… if not it wont change the journey we have been on. There have been some disappointments, but mostly it keeps building our faith in God. Thank you for listening.
I have a child at Intermountain right now. Michele… what you wrote was exactly what I’ve wished I could articulate to my friends and family in person. I sent them all a link to this post. Thank you. From the soul of this mama.
As a writer, I also struggle with the balance between authenticity and honouring the privacy of my loved ones, and conveying both my faith and my reality. It’s a boon to come across what you’ve done here. Thanks for leading the way….
Love from a friend you’ve not met yet,
Jenn
You’re so welcome, Jenn. It’s such a relief to know someone understands. It’s what I’ve wanted/needed for a long time. Simply writing this post and seeing the outpouring of responses have encouraged me.
I, too, struggle with the balance between authenticity and privacy. It’s something I think about almost every day. I’m always asking others (including my husband) for advice on where to draw the line. I believe our experiences are powerful to help others. But I also we need to protect our family first. A blurry line at times …
Can you moderate and fix my misspelling of your first name? Ha!
Jenn
Done. No worries. 🙂
Michele,
I read this JUST HOURS after my son was officially diagnosed with Autism, and it was just last week that I spent day and night managing a meltdown that also started over something simple.
I’m exhausted, sometimes daily. But like you said, I’d do it again, because it’s so worth it!
Sounds all too familiar. I had no idea. Thank you for sharing your story here, Deanna. Saying it out loud helps ALL of us.
I like your list. Especially the last point. I would do it all over again too.
Stop telling me, “These special children just need love.” Yeah…. love, meds, and sometimes a straight jacket! And please, PLEASE stop telling me that God chose these children to come to our family because we’re the best parents to “handle” it. I know that’s just a cop out, I know what you’re really thinking is, “Thank God it’s not me, and please don’t ask me to spend any time with your kids.”
(Raising a boy with Fragile X Syndrome.)
OMGoodness – this is very good. I agree with each feeling (my son, John is precious, charming, adorable, just turned 10 so he is a not-so-lil guy now and we deal with autism together)…I could add many things, but what I will say is a sincere thank you to all the people that ask questions and then seriously wait to hear the answer — they are interested at a heart level and no matter what their question it is welcomed.
I do not normally comment on blogs but your posting took me down to my core as a parent of son with special needs who is 21 years old and to me is still my “organizing principle” of my life. Thank you and best wishes.
Charles, thank you. For daring to comment and join hands with the rest of us. We’re with you.
iam a parent who has just taken up the responsibility of taken care of a school of kids with special needs every Sunday my wife and kids and other families we fellowship with this kids love them befriend them.This has changed my life
Thank you for summing it up! It can be so hard when people THINK they know what your life is like and tell you you’re fine.
Love this! Thank you. Thank you. Thank you!! I’m in tears..someone else really gets it and has days like mine yet understands why I could never just throw in the towel and walk away, yet it’s ok I say it. Leave me alone and just listen I don’t literally mean it and I will get over it!!
With you, dear Maria.
Eloquent. Exactly what I would say about my life with my son. Thank you.
Glad to hear it, Rachel.
Michelle,
My daughter has three little boys, one who is diagnosed in the Autism Spectrum Disorder, and one that is behind at eleven months. There are many grandparents available to help, but she won’t ask for any. Most of us are even retired and available all day. I just don’t get it. I hope she doesn’t see this because she is very sensitive and won’t speak to me for months if she finds out. She pushes everyone away while posting blogs about how her oldest is growing up in waiting rooms. It is heartbreaking. Any advice?
It’s so tricky, isn’t it? My only advice is to continue to be supportive and present, and try (even though it’s hard!) not to take it personal. My guess is she feels her value as a “good mom” is dependent on her doing it on her own. There were times when I thought asking for help was a sign of weakness or deficiency in me. I believe a time will come when she needs help, and she’ll need to know your grace and love will cover all.
Thank you for putting in writing everything on my heart!
Michele,
Our 2 adopted sons have Reactive Attachment Disorder, Post Traumatic Stress Syndrome, and show signs of Fetal Alcohol Syndrome. We have 4 biological daughters that are high achievers. It is COMPLETELY different. You can’t even compare.
Thanks for your post.
Yes. Completely different.
Thank you so much! I want to print this and hand it out to all my friends. I may send email links to my friends who are not on Facebook.
On a different note, when I shared your post on Facebook I added that my experience differs at #7. I am rarely authentic about our struggles because almost no one wants me to be. I am a positive person, always working at making my family thrive, trying to make the best of things, but, almost without fail, when I expose any portion of our real difficulties, people rush to downplay negatives or gloss them over with optimism and silver linings, or even criticize me for feeling grief, frustration, or anxiety of even the smallest duration. I am a huge fan of optimism and silver linings but trying to encourage me, or others like me, without first recognizing or validating our difficulties is belittling.
Your #3 relates to this. I can’t tell you how many times I hear “all kids do that” or “my kids does that too”. Maybe their kid did “that” when they were a 25 lb two year old but I doubt their child is still doing that as a 90 lb 10 year old or that their child might do that off and on for their entire lifespan. Usually I get the feeling that they have some level of understanding that my child really isn’t the same as theirs but people don’t like anything ugly or unpleasant and when they say those things they are trying to talk themselves into thinking things are okay as much as they are “reassuring” me.
I would like to add one more thing to your wonderful list!
Please understand that sometimes I’m in mourning for the hopes and expectations I had for my child when I was pregnant with him/her. I love my child as much as you love yours. I want the same things for my child that you want for yours – I want my child to be happy, to be safe, to be healthy, to be fulfilled, to be loved.
I watch my child grow and know that some of the things you so rightly brag about for your child are virtually impossible for my child (given her disabilities). Some days that hurts more than others. So when you ask me what the latest thing is that my child has done and I tell you – please understand that I may want to slap you (and sometimes twice or even more) when you say dismissively “Oh, my Johnny/Susie did that when s/he was 3. Isn’t your son/daughter 11? What’s wrong with him/her – I thought s/he was over that.” You have just trivialized whatever joy I may have in my child’s achievement. You’ve also shown that you’ve never listened when I’ve talked about my child before and the obstacles s/he faces every day. Thanks for your concern (heavy sarcasm on this last).
Thank you so much for sharing this and thank you for your transparency. We should have a transparency conference, a place where we can all vent and unload all of our frustrations and actually be understood. I have experienced everything you list there except for the violent outbursts, as my son has CP and is in wheelchair. My husband and I are his arms, legs, fingers, toes, advocates, counselors, teachers, therapists and we fit parenting in there somewhere, as well as parent his 2 lovely little sisters. I am exhausted and frustrated, fighting right now to keep his insurance in place and have a heavy cloud of a major back surgery (for him) coming up in spring. It is a tough road, and I thank God for his strength and another day survived and conquered every day. And yes, I would do it all over again!
I go through this every day as I have 3 with disabilities . But I would go through It over and over again any day
Thank you for sharing this. I am a mama to an absolute joy who happens to have special needs. Since her birth, since the opening of these doors to a world once unseen, I have lost MANY friends and pillars of support. It’s a frightening place, yes – but this is where I live now. One of the people who stepped forward and offered a hand then (and STILL) is a sweet mama to 4 beautiful babes, one of whom has been diagnosed with RAD. After reading your article I sat here and cried, realizing for the first time that she, too, is parenting a child in this world of special needs. Thank you for sharing and for opening my eyes to see that I have a friend who DOES understand.
Blessings to you!
-Poppy’s Mama
As a mom who is finalizing the adoption of a sibling set of 3 in two weeks… Which brings our kid total up to 6….i get this.
Every word is TRUE.. painfully some days.
Thank you for this.
From the bottom of our hearts.
I have a 7 year old son with special needs that I blog about and I happened upon your article through “Mommies of Miracles” and so glad I did. I just about cried through reading your entire post because I can very much relate. Especially with numbers 3 and 4. Thank you so much for sharing this!
Understand it cost me to get a sitter for my 16 yr old. If you really want to see me invite him too. Or pitch in for my sitter. Find a way to visit me.you know I can’t get out. I am a single parent with no help from dad. I am only one.
Beautifully said. I agree with everything. Adding maybe only- Believe me, I know my kids better than you do; you see them once a week, I see them all day and night 24/7.
And your not alone. Thanks for reaching out, I feel not so alone either.
I Would do it all over again. I can say I share in every step of the 7 you chose to post. It very true to the letters you wrote. I had to do it alone, I must say I now have succeeded my daughter lives in a beautiful group home & she’s living a wonderful life. I see her every 2-3 weeks & she’s happier than ever. To see her happiness lets me know I can now enjoy the rest of my life. I say to you with GOD all things are possible. If you need someone to share a tear or just to talk hit me on my email maybe we can share something’s together. Don’t give up!!
I would like to see others walk in my shoes for just one day .IWould change my social worker for I have asked for help and only got half. My son Thomas has DOWN Syndrome / Blind and he has slept with me for about 7yrs now he is 11 and he doesn’t like his bedroom because it scares him .Thomas asked the ot for a sensory room to help him go in his own room but was told no .He sleeps for about 4 hrs at night and then wondering round the house so of course I have to be with him which then leave me with lack Off sleep he is on 8mg of melatonin which helps him go to sleep but not stay asleep if the ot put a sensory room in I am confident he would sleep all night .The reason I know this is because the respite where he used to go had this in all the bedroom he no longer goes to respite care because apparently he doesn’t fit the criteria anymore (Brian house blackpool) so who knows what anyone else can do .I also have a 23yr old son who has neuro fibromatosis and I have not had any help for all his life I wouldn’t swop them for the world they are my gifts From God but I am a proud mum of 4 and don’t know which way to turn to now Thank you for taking the time to read this caroline.
Absolutely beautifully written!! Hits the nail on the head. To know someone else has these feelings restores my faith in being a good parent. Thank you!
Wow i have tried to tell family and griends this. dont judge untill u walked a block in my shoes, my own sonn who does not live here told me to kust send them back i asked to where they are my children too
I have a 3 year old son with angelman syndrome and a seizure disorder. He doesn’t talk , he has trouble walking, he also has low muscle tone . Every day is a challenge . I love my son more then I love my self . But there are days more times then not , I feel like a failure. A failure at being a mom , a failure at life. I’m flying blind here all though Jeffray has a great teacher and has great therapist I feel alone . I really have no one to talk too. I’m home alone half the day and the other half in with Jeffray . My husband doesn’t get home until about 9 at night . So everything else is all on me . It’s not like I’m complaining I just wish I knew if I was doing a good job and plus I would like tips on how to control his behaviors , if any one has any tips
This is the best “what special needs parents want you to know” sort of posted I’ve read. As a special needs parent I related to each and every one. But also appreciated they weren’t all “please pity me”. I love my kid even when he is driving me batty.
My issues are a little different although I can relate to 90% of what you wrote! I gave birth to what we thought was a healthy baby girl 9/7/96. At 7 months she was dx with several brain abnormities. So I don’t deal with tantrums and violence but I have had an infant for 17 years. Most could not fathom that I know. I am a better person because of her, but thanks to the chronic stress (Navy wife too!) I was dx with fibromyalgia. We are also battling Tricare for my daughter’s PT utilizing a horse and working with a pro bono attorney from the firm Akin Gump (can you say blessed!
You sound like a beautiful person. I wish I knew you personally. My heart breaks for my daughter with two children on the autism spectrum. It’s unbelievable how some people respond to them and us… “Walk a mile in our shoes,” I think when others feel the need to tell us how to “discipline”. Oh, I enjoyed your blog…
Thanks for writing this. I would add, “Just because my son holds it together at school doesn’t mean he doesn’t have a disability. You don’t see the meltdowns at home because I told him he had to do his homework before he could play a video game.” Or, “Just because my son LOOKS normal doesn’t mean he doesn’t have a disability.
“Just because he isn’t that child who is screaming in church doesn’t mean he is “there”. He doesn’t like to be in the “real world”. He prefers to be playing in his imaginary world.
This was all very well said. I’d add to this that when you are a parent to a child or children with special needs its EXPENSIVE. I don’t expect you to help or pay for things or even really fully understand the huge expense of having a child with special needs and medical needs. When I say I really just cannot afford to go/be/do/attend whatever it may be it’s because I really can’t. It’s that I know next week I’m going to pay $200 out of pocket for my kid to seer two specialists and I just don’t have an extra $40 to go do whatever it is you are doing. I’m not snubbing you. I’m not blowing you off or making excuses or looking for a way out. It’s just that discretionary spending doesn’t happen in my life anymore. I would probably love to go and have some time off, but financially I have to put other priorities first.
Thank you. This says very eloquently what our life looks like. Especially number five. We fostered to adopt three girls. Part way through the process we found out our middle girl is much more medically complicated than we were told. Everyone said are you sure you want to keep her. It was an unbelievable suggestion to us that we would send her back. Our oldest has RADs and we are now being told should not have been placed with her sisters. It’s been a long road. Both of us have lost our employment because of the medical needs. Sometimes it seems too much. It’s good to hear we aren’t alone.
Oh my! Thank you so much for writing this. Having a special needs child, at the young age of 23, I’ve been asked so many questions. My son, Kade is now 15. He has Angelman Syndrome. When he was diagnosed, he was 1 in 800 known, worldwide. Much greater number diagnosed now. I’ve had people say “Can they fix him”. No, he’s not a toaster. “You’re so good for keeping him”. Don’t even get me started on that one. With so little information on his syndrome, it was all trail and error for us. I’ve had so many sleepless nights, therapy appts, trips to the ER, and days when I simply thought I couldn’t do this anymore. I can totally relate to wanting to just run away. Just for a day. There is nothing greater in this world that God has chosen me to do. I have a huge support system that will actually sit and listen and even cry with me. Sometimes, that’s not enough. Some days only five minutes to not think helps me more than a vacation ever would. So yes, I appreciate all of the support, in a very heart swelling way, but at times, I just need to cry and be mad about it. And that’s ok, too. I don’t know if any of this is making sense but it makes sense to me. I do not pity myself, nor do I need others pity, for me or my son. I WOULD INDEED, do it all over again. Love, Hollie
Hi. I’m Miranda. Mandy for short but I’m special needs sibling. My little sister has a cognitive impairment and a whole list of other things both mental, physical and medical. All I ask is that like the parents of these children I’m heard and listened to. I need someone who just will sit and listen to me yell and scream and rant about it all. Someone who just nods and not even pretends to understand but just listens to me rant about the hospital stays and the therapy visits and my own host of problems because I have a clinical depression. And if any other people bother to read this, sibling or adult, email me. I am willing to listen to you so long as eventually you will be willing to repay the favor and listen to me. 🙂
I’m so happy you had the courage to share this, Mandy. I often wonder how my youngest son, who has a brother will special needs, feels about this. Thank you for giving yourself and many other siblings a support and outreach to turn to. God bless your sweet heart. Hollie
Excellent! As the mother of a Billy, 24 year old son with an autism spectrum disorder, I agree with everything you wrote. My husband, 2 girls and I are very familiar with endless tantrums and extreme aggression. Reading whatever I could find related to his disorder, schlepping to many Drs, trying anything that might help and the well-meaning comments are all familiar too. What you wrote goes beyond the boundaries of a particular diagnosis. You are far from being alone in all these respects. You are in the company of millions of people with these struggles too.
Many times when I felt I could not go on, I heard of someone who was coping with a situation that to me seemed to be incomprehensible, I prayed for them, and found I had the strength to manage my situation. Billy is in a group home now and doing well, rarely has tantrums or aggression.
It is the most difficult thing you will ever do. Mine are now into adulthood and the hard work was worth it. Things still get messy, but with enough normal times in between that it is not as difficult. And there is nothing like hearing from one of my adult children that they appreciate and love me for not giving up on them. And believe me, i have experienced everything you describe – and as a single mom. We finally found the right therapists after years of looking and we pay dearly for it and just file the out of plan claims, but it is money well spent as the wrong therapist just make things worse. Good luck to you!!!!
I am in tears. This is EXACTLY how I feel. Thank you for putting it into words.
Finally someone who can put the feelings of a parent experiencing this into words. Perfect!
I too have adopted a daughter with special needs! She is everything I never wanted and I am so in love with her! But you are so right every day is a challenge and at times a scary adventure too. I have five children, I gave birth to two of them and adopted the other three. Along with theses five I also foster a little boy! I use to be that person who would judge others, wondering why that child would not sit still or even be quiet. Why do those people let them run about wild and why are they allowed to talk back and say bad words. What is wrong with these people, well now I am that person and I and so sorry that I felt those feelings towards others that I did not know! Shame on me for not being sensitive towards others. I just want you to know that I do understand what you are going through and the road ahead will not always be easy to travel nor always bring sunshine but know that GOD walks with you each and every day and loves the people that take care of his children. I understand and I thank you for sharing with all of us!!!!!!!!!!!!!!!!!!!!!!!
Thank you. thank you from the bottom of my heart for having the courage to say and post all of these very true things. I know every single one of these words.
Very moving commentary. My heart goes out to all of us. I am still looking for my diamond. May God be with all of us. Sometimes the ones closest to us, whom should understand and be loving, are the most judgemental and cruel. Our children allow us to become more tolerant and compassionate people, maybe that is the biggest gift.
I hear you! Thank you for writing this. I have 5 adopted kids, 2 with RAD. I would add this to #2:
When I do ask for help, it was VERY HARD to even ask and I waited until hearing “no” to my simple request would crush me. Please don’t tell me that if there’s anything you can do to let you know if you don’t mean it. I have asked for people to help with my other children while I work with my RAD kid. I have asked a Sunday School program to keep the kids indoors during a 30 minute program to help my family avoid a violent fit with a child who couldn’t handle the transition from outside fun into an indoor church service. I was told, “no, we cannot work with your child at this church” shortly after being told to let them know if there’s anything they can do to help. So, please, don’t tell me I can ask you for help and then turn around and tell me “no” when I get the courage to be honest that I actually need it.
I’m grateful I came across your site. You spoke volumes in the first page. I too would do it all over again, and we do, each day. It is a blessing, and I am honored for the lessons. I work in holistic nutrition and am an environmental toxins expert, and I would like to offer this to all. The more we take toxins out of our children’s lives and bodies, the more at ease they become. The same is true with the more my child is in nature and away from technology, the more connected she becomes. I do not mean that all matters of emotions or this disorder will be resolved. I mean that I have personally seen results from removing gluten, sugar, processed foods, additives, and turning of the noise in their lives. Thank you Michele for your willingness to take what precious little time you have and allowing your words and actions to heal others. Many Blessings!
I have an 8 year old son living with Autism. Thank you for putting in to words what I have felt for a very long time. God bless you in your life’s adventure.
Parents like myself that live in rural areas are at a greater disadvantage. There is nothing within an hours drive to help. It is also hard to find care givers to give you a break…especially when your child with special needs is an adult. My husband works 2 jobs an hour away. I feel very isolated.
Celebrate with me! As strange as it may be for you to hear how excited I am that my two year old held a toy in both hands for a minute, acknowledge my excitement, and celebrate that victory with me, because trust me, it’s been a long time in the making!
I am in the U.K and It has taken me 10 years and finally he is going to be assessed for his special needs educational statement. My son is 13 in April and I have been fighting since 2004, I thought for an ADHD diagnosis ( which we received in 2012) I had to find legal representation to try and get my son the help he so desperately needs in school before he has lost his entire education to a system that has shamefully let him down. He has got ADHD, Developmental coordination disability, receptive language disorder, almost no short term memory and it now seems he also has Dysgraphia. He has maintained main stream schooling as “there was nothing wrong with him !” to warrant anything other than school action plus. Obviously being a 10 year battle I have some jaw dropping situations along the way, from teachers (SENCO) bare faced lying to me about my sons referrals (only found out as I went to my G.P, my gut knew something was not right), to ‘Professionals!’ telling me my son has been assessed and given the all clear for things he had NOT and the horrifying list goes on and on even down to the SENCO at his secondary school reporting for the assessment panel that his reading age is 10.8 which is old enough to access the curriculum yet my Educational psychologist report puts him between 7 and 8 yrs nothing above the 3rd percentile, and his English teacher done a reading test Fri just gone and he scored in the 8yrs range. The SENCO’s report could very easily have stopped the assessment as he stated my sons needs are currently being met at school level. To every mum / Dad / Guardian/ Carer if YOU know your child is not coping or struggling beyond then ‘norm’ do NOT let these so called ‘Professionals’ fobb you off. We moved house in 2007 and honestly it is only because his school told me to make sure I pushed for his statement that I fought so hard. Why would I not believe a ‘professional’ that has chosen to work with children with special needs? If you can not trust these people to at the very least know how to fill out a referral form, and be able to tell the difference between a child that can not be bothered (as this senco has implied in his report) and children that are really in trouble. My son does not fit the ‘ADHD that seems to automatically spring to peoples minds’ he does not swear he is not rude he does not throw temper tantrums, he does however have very limited concentration span, still only sleeps around 3 hours or so a night and is just on and on and on and on love him, but i think for our own sanities we find the tune in tune out buttons knowing from our childrens tones if we are needed or you are about to receive a full rundown of the last living pokemon and every pokemon fact that gets triggered from the conversation. I do not think I have it any where near as bad as some as my Son is so good, although very draining and frustrating as his teens are kicking in now. But in saying that it seems my son has been overlooked (despite the size of his mothers mouth 🙂 ) because he is not in the box of people’s preconceived ideas, with his other problems being unearthed now, it would seem that he is the way he is due to the combination of ll thats wrong. Gosh I have gone on Sorry, What would I change ?? I think the part of this whole nightmare (if it everends) that I personally found it the hardest to keep fighting through, was being made to feel like I wanted something to be wrong with my son, and they really did make me question myself everyday, maybe i should be working harder with him ,etc etc, I could never see me stop fighting to get my son or any child if I was in that position to be helping another child/children, but when every door slams you in the face, everyone looks at you like your crazy, tells you your child is getting all the support they need, you question yourself, the effects this battle is having on your childs self esteem that right there 3/4 of the way down that dark empty well when there is just a thread or two left from what was a rope tied to the bucket, that will pull you back upto the light, all you can hear is your own voice over and over and over again. Something needs to be done before that rope starts fraying let alone has all but snapped, when this is going on we not only have this battle we are raising Special Children Blind with no diagnosis, no support and how can we as ‘Non-Professional’ be expected to understand our childrens needs and structures needed if it is taking 10+ years for diagnosis, It is all there in his paper work in black and white ?? I still do not get it and I have not finished with this SENCO yet but getting (fingers crossed) my son’s educational statement firmly in place is first. Then I am going after him. How many parents do not get the heads up I did when I moved ?? How many children are being left unsupported and inevitably un educated ? how many parents are listening to the ‘Professional’ and believe there children are just lazy or disruptive, being told you need to be firmer with him at home or we should be doing this or that ??? It scares me, it upsets me, and it makes me f#*+ing mad. and frustrated and exhausted. LOL after saying sorry for ranting for so long I have done it again . Good Luck to everyone and love to you all and dont forget only Special people get Special children <3 <3
Here are a few of my common statements or questions I hate. Did you know your kids were special needs when you adopted them(why does that matter? We would have them no matter what), Do you think she will ever be married/live on her own(my girls are growing and learning every day and are both under 10 I am not going to limit my childrens growth), are you making plans for a group home(of course not! Why would you expect that a mother of two young children to be planning for where they are going as an adult and why do you assume they will be in a group home), bless your heart you are such a wonderful person to have adopted them, they are blessed to have you(NO!We are blessed to have them!!! My children are not a charity case, they are just as much a blessing as your children are to you).Thank you it was good to get that out;-)
I wouldn’t change it. Would do it again. But as you say…people can’t understand why I miss things or cannot go somewhere. It is just not that easy. My daughter has West syndrome, with mental retardation, cognitive impairment and on the Keto diet. In South Africa NO one knows what that diet means and with that restaurants show you away because I cannot order their food. Small silly stuff parents with “normal” children don’t even think about…
Well said! It’s not always an easy road, but it’s our road. My daughter thaught me a lot the past 4 years. Looking back I see it was difficult adapting to the new situation. We lost friends and gained new ones with a bigger heart and more understanding of our situation. My house isn’t tidy or super clean, but we are a happy family. Grateful for the chance to raise our little girl and hopeful she will become an adult .
Incredible article that says it all! It is to the point, very explicit, and direct, and true! It could not have been stated any better! Thank you for this, for me, for my daughter who lives this life, and for the many others that will read it. I have lived with her for periods at a time, brief, but enough to know that your descriptions are very accurate! I am thankful now she can share this description with others, and they may have a much better understanding….Thank you again, so very much!!!!!
Thank you! I am a parent of 4 adopted special needs children and 2 bio children. This reflected my life to a T! Thank you for letting me know that I am not alone nor am I crazy! Even though all my kids are grown, 2 of them are still living with us and all of this still applies! I will always be their Momma and will always help them with their struggles but I still need to have time to remember me! Thank you!
Perfectly said. We know your journey well. It’s not a lifestyle anyone would choose if they REALLY knew how challenging and complex life would become. Thankfully we didn’t know. We innocently and happily stepped onto the pathway that changed our lives forever. My hope is that we’ve learned to carefully and faithfully fill our place in the world by reaching out to others with encouragement, support and understanding.
Well said. We first adopted from foster care 15 years ago. Much HAS changed, socially, in that at least people are very much more aware of adoption in general. When we first were working to adopt it was not as well publicized in society. Now people are more aware of adoption in a way that they were not just a few years back.
However, I still see how blindsided families are when it comes to dealing with emotional trauma (RAD, PTSD, etc.). Finding counsel and actual help is STILL almost/mostly beyond reach for many foster or adoptive families. Most people are still vastly unaware of the long-term ramifications for children stemming from trauma. (Sorry – preaching to the choir! 😀 )
I wish I had a dollar for every time we’ve heard the “you’re a saint” statement, or the questions about how we plan to address the long-term needs of our kids, or any of the 1001 other rather insensitive questions/statements we deal with all the time. 🙂 If I had only a dollar for each time I’d be able to help fund a clearing house for information on where families could find the info they are seeking for their various situations. 😀
How do I put this appropriately? Supporting parents of special needs children is at the top of the “indulgence chart” even higher than a funeral, because it is only the beginning not the end. It requires more spiritual strength than funerals or wakes. No disrespect intended, but funerals are easy by comparison. We grieve move on, and reminisce fondly. After attending many funerals and desperately searching my soul for answers on how to “make it better” I realized that some things just need consistent support. They just need for you to be there for them. You cannot change the condition requiring support, you cannot do a major “intervention” and turn things around. You just need to be there, stay there, and let those you support know they can count on you again and again. God bless children with special needs and their angel from heaven parents.
Well done! 15 years into it…
I here your cry . God bless you and my prayers are with you.You are a very special person, and I certainly would never judge you. I also know a little about RAD disorders. These children need a tremendous amount of care. In my opinion his disorders needs a staff of people to help meet the need. My prayers are with you,and we will be praying for you. God bless
Wow, you’ve said what needs to be said so very well!
I’m the mother of a child who had ‘mild’ special needs. Without going into a ton of detail, I get the frustration of needing help from “the system,” begging for help, researching, applying, phoning, writing, etc., etc., and when after years of frustration for all of us, but most of all my poor son, the long-sought help came with needless strings. I learned early on that my mouth and ability to use it effectively was all that stood between my kid and good medical treatment, effective education, etc. So I relate to much of what you’re saying. I must add that my son is now an adult, healthy, productive and has learned (by himself in most instances) how to function within his limitations. He’s married to a wonderful girl and they own a beautiful home. God has blessed us beyond anything we could have imagined 30 years ago when we were living through all of the above.
My newly-widowed sister adopted four teenagers 25 years ago, all of whom had varying degrees of RAD, though no one called it that then. We all tried to give her all the support we could but reading your beautiful words makes it clear just how far we fell short. (After one episode where one of the girls punched her in the face, screaming profanity all the while, we “aunts” (we didn’t deserve the title then – we were far more concerned for our sister than those kids, I’m ashamed to say!) urged her to “send them back.” They’d not yet been adopted, you see. Send ’em back. Seemed clear to us.) The “end of the story” is that she didn’t quit on ’em and they are all grown, all have families and jobs and all but one owns his own home. They’re thriving, IOW. God has done a mighty work through her with all of them. I should add that she had two grown children with her husband before all of this happened. 🙂 So now she’s the proud grandmother and great-grandmother of a small multitude and loves it. She even went on to take on the care of our adult nephew who has Down Syndrome, after his parents died. So much of what you say resonates with me as a mother and an aunt and as someone who didn’t get it as soon as she should have.
God bless you!
I am the mom of an boy with aspergers. Number 3 is my hardest. People think because they have a child who had a tantrum they understand how I feel. So annoying. I love this post. It truly felt like you reached into my heart and put my feelings into words. I have also been frustrated with people trying to diagnose or find a reason for my son’s issues. Its like if we can label or find a cause it will fix him. At the end of the day it doesn’t really matter. He is who he is and the most important thing is that we raise him the best we can and help him progress. At times I have also felt like its a competition as to who recognized his problems first. Mostly from my own family but I hate that. It makes me feel like they are saying that they are more aware of my childs needs than I am. My son is now 11 and I have learned so much from him. We are navigating through his world just fine. We face some sort of challenge every day but we are getting better every day. He is an amazing little boy and just like your number 7 I would do it all over again. He makes me a better person.
Thank you Soo much for this I’m not good at putting my feelings n needs into words and this will help my FAM n friends to understand me better
Thank you for being so open and honest. My grandson is a delightful loving lovable little boy with AHC & SPDy daughter and Son in law are amazing loving parents. They have just had a beautiful daughter and we just want to be there for them and with them your “letter” really helped
Oh my lans! I cried when I read this. Then shared it on every networking site I’m connected to. My 8 yr old amazing son has an ASD- He’s a high functioning Aspie with ADHD and SPD.
I do want to add to what you said- we do have quite a few friends who genuinely support us and who regularly come alongside hubby and I with love and support. I would be lost without the ones who truly understand that I’m still me, just with a lot less time and different priorities- the ones who encourage me to still be quirky and genuine- the ones who love my son through God eyes and remind me I’m doing a good job on the days I do want to run away. There definitely are days where I feel so alone and defeated. Some days I feel like we’ve been through the ringer with nothing to show for it and no one to validate me, but I’m not looking for validation. And it’s an awkward position to be in even though I know I have people I can call and vent to.
There have been so many days I just can’t do anything but sit down and cry. I’ve put so much blood, sweat, tears, and prayers into my child- and there are so many days when all I can feel is stationary. Up until last school year my husband and I yes had friends who loved and encouraged us the best they could, but we had no other advocates aside from each other. God has blessed us with an AMAZING IEP team at my son’s school, and I am learning to measure victories and milestones by very short tunnels rather than one long one.
And my goodness. I can relate to number 5. I imagined our church family coming alongside of us to understand and not judge. I imagined that at least they wouldn’t be the ones at the time we started working with a specialist to question everything we were researching and learning. I imagined them taking me seriously and doing what the body of Christ is supposed to do- be genuine and transparent with each other, uplift and edify, and share each other’s burdens. But no such luck. My pastor’s wife gave me a two hour lecture about how I probably set him up for it because I opted to vaccinate and how she doesn’t understand why moms like me are so tired and have bad days- like she’s been some poster child of proverbs 31 mothers all her life. Our early education coordinator at the church would wait until we left and stick my son in a room by himself away from the other kids. No family in our church would have play dates with us and teach their own kids to be kind and compassionate. These families would giggle and shrug it off with a “well we’re all thinking it” glance when their kid would run up to me and ask , “Does your son still hit?” Safe to say we are no longer at that church. And praise God that we have found a new church since then (albeit that took 4 years) whose childrens pastor has family experience with special needs.
Sorry, didn’t mean to write a novel. It’s just nice to find others who understand me. I harbor zero bitterness toward mentioned church. It just makes me sad that churches like that and schools like our former one are so calloused and cold. It breaks my heart to see other families going through that, too.
Thank you for validating me 🙂 YOU are definitely validated. Blessings!
Being a parent of a child with special mental difficulties myself I can totally relate to your post today. As I read each step I could not help but cry not out of sadness but more of for the first time in almost 26 years……someone (outside of family) totally understands. Our road is a difficult one. People say, with great intentions and a loving heart (well most do) they understand but no one understands until they live it.
The only other suggestion I would add is please don’t tell me that if I disciplined my child better they would be ok……..all I can do is smile and shake my head……again total lack of understanding.
I just wanted to say thank you. I have read many articles, but not that state parent’s needs so well. I am a single mom to three children. My oldest has 7 different diagnosis that are actually all covered by the one she got last, autism. Life with her can be very difficult, and well meaning people say the harshest, and most ignorant things about her sometimes. My middle child is behaviorally and developmentally well, but struggles with severe asthma and chronic intestinal issues, and my youngest is 4 and he has Asperger’s. Life can get so complicated just managing day to day activities let alone trying to hold a job and be both parents. I know my friends don’t understand and I don’t even know where to begin to ask for help. Thank you for painting a good picture of what we go through for me to share with them.
After I read the 7 points and had to really think about them, I realized how profound they are and how I hope so much that it reaches many families. It actually made me cry, that someone actually “gets it”! I just want to add a few things…what about all the lost years? All that time that seemed to drudge along at the moment but now im the blink of an eye has been ripped from your soul? All those special times you were just way too exhausted to create with your precious children. All those times, pics on fb or whatever that you see other families experiencing. The immense guilt that you feel when one day, out of the blue, after years of thinking you are doing your best, your other child, the “ok, normal” one starts resenting you because you were so busy putting out fires all the time, she didn’t get the attention she needed, that she deserved…how does one fix all those years? They are gone forever. Whatever special memories were made are mostly gone because you had to take awful meds just to survive the day and deal with the terrifying panic attacks, the constant fear, unpredictability, the huge anxiety that is always present. So, With the incredible assistance of some very special teachers and a great FX specialist and meds that all help manage her behaviors, each day continues to be a challenge. But at least I have reached the point where I can finally begin the journey of creating good memories for both of my children. I still feel like it’s too little, too late and very cheated and angry that I made such mistakes. Only now do I see this. I was so blind, just getting through each challenge. I am so very sorry to my children. I vow to do better, now that I know better. The truest statement of all that I deeply believe is that “YES, I ABSOLUTELY WOULD DO IT ALL OVER AGAIN, 1000x! V. Rosencutter
Thank you, Michele. My son is 25 now. His father died 2 years ago. I feel like my job will never be over. Praying especially for these dear children while you are recovering and undergoing treatment.
I would have not taken negative comments personally realizing they were clueless and sought more knowledge to understand. But most of all, depended more on God’s love and promises than anything else. No one can really know. It takes strength more than we as humans have to endure and show such love. Pain, anger, fear, and so much hidden in a little hurting heart and so difficult to free. We can’t do it without Him. That pain etc. will touch you as you watch and reach to a heart surrounded by these hurts. Pray. Also, after reading many of the comments, wish I had come across this earlier. Very encouraging! Thank you and everyone for sharing.
You put my thoughts and feelings into words that I think all the time. My son is ASD. There are no normal days, no normal fun day, nothing ever comes out the way I had planned. I have been told to leave places by onlooking adults who gawk with gaping lips. Nothing is normal when you can’t go to the store to buy 10 grocery items and you son is screaming at the top of his lungs through the entire store. On lookers stare as I am running out of the story with child and grocery bag. That is life that has been handed to me and many others. Thank you for your post!!!
As an adoptive parent of 5 special needs children who range in age from 7-25 with disabilities such as RAD, PTSD, Psychotic NOS, Generalized Anxiety Disorder, drug exposure and ADHD, I would like to add that just because you can’t see it, that doesn’t mean it isn’t so. Please understand that a wheelchair or a hearing aid are visual reminders of disabilities. My children have no visual reminders so every screaming fit, poor grade, difficult social situation or immature reaction are what remind me of their disabilities. To others, this looks like poor parenting or lack of discipline or outright apathy on my part. Each day I am subject to judgement from people in department stores, patrons in restaurants, other parents at school and even ignorant teachers–all while I’m trying so hard to do my best. Its emotionally exhausting. Please help me navigate in a judgmental world by not judging.
If you want to run away for a long weekend, you know there’s a space for you over here. And great diving. Especially great diving. 😉 I have zero parenting advice.
Often what a parent needs is less advice … and a great getaway! 🙂
Yep. You “nailed it!”
No wonder God helped me find YOU!
Your words are salve to my soul!
Keep writing! So many of us LOVE your gift of putting “Heart” on paper! Thank you!