The Lonely Battle Of Special Needs

And How To Find The Strength To Face Each Day!

Raising children with special needs can be an unending battle. You love your kids, but being “on” 24-7 takes it’s toll on you. The question is, how do you find strength to face another day when you’re at the end of your rope?

Defeated. Frustrated. Lonely. Tired. Done.

Like a spin-cycle set on the top speed, those words flashed through my mind all at once. The other kids on the team had accepted the position the coach assigned to them. Joey grinned as he trotted to first base. It wasn’t his ideal position, and certainly not his favorite, but he accepted it because that’s what normal kids do. Same with Trent. He was small for his age and catcher really wasn’t the best position, especially since he couldn’t throw the ball past the pitchers mound, but he complied all the same.

Then there was my son, who stood in center field, stomping his feet, throwing his glove and refusing to play, in his words, ‘that stupid position.’ He wanted to play shortstop. He thought he deserved to be at shortstop. The game nearly had to be delayed while I coaxed him until he trudged to center field.

The assistant coach stared at me with a haughty, judgmental look. I could hear his thoughts echo in my mind. “What’s wrong with your kid? Why can’t you get control of him?” Or worse, “He’s just a kid. Why are you so harsh?”

I fought the urge to say something, explain his behavior, or make excuses. Really though, what was I going to say? “You see he was adopted through foster care and………..” no that wouldn’t work. “He experienced trauma before and after he was born and…….” no, not that one either. “You see, it’s tough to raise a child with a disorder like this because……” nope, just more judgement if I said that!

It was a day I’ll never forget because, although there were a hundred or so parents and siblings gathered for the game, I had never felt more alone.

Been There, Done That.

If you’re raising a child with special needs you probably identify with that scenario. If your child suffers from a disorder like FASD (Fetal Alcohol Spectrum Disorder), or Reactive Attachment Disorder, you especially identify. You might even say, “Yep..been there, done that!” You understand the defeat of trying to get your child to cooperate in the middle of a tantrum. You’ve experienced the struggle of being in a public place while your child acts out, throws a tantrum, screams obscenities, or destroys personal property.

Perhaps you’re fostering a child who has gone through significant trauma and it’s caused them to struggle with healthy attachment. You may even find it difficult to face another day because your strength is sucked dry and you’re ready to quit!

We’re right there with you. We understand completely and we want you to know something….you’re not alone!

Not Alone, No Matter What!

Let me say that again: You are not alone. Regardless of your child’s story, the embarrassment you’ve walked through in your neighborhood, the painful moments of trying to explain your child’s behavior, or the awful parent you think you are for wanting to quit, you are not alone. No matter what, we are standing by you because we’ve been there too.

We’ve had teachers tell us that we “just need to parent with more structure,” or “use a behavior chart like she does at school.” (Can we just agree that we’d all like to set fire to the behavior charts?) We’ve stood helplessly on the side of the road while a police officer asks in a demeaning tone, “Well can’t you control your son? I have 3 sons and my wife has no problem controlling them!” We’ve had case managers make judgement calls on our family because they failed to understand the severity of fetal alcohol spectrum disorder, attachment issues, extreme trauma, and the reality of this journey.

We understand every tear that drips from your eyes. We know what it’s like to feel done, be at the end of your rope, or think thoughts you never thought you would think when you became a parent. Raising children with autism, brain damage, fetal alcohol spectrum disorder, down syndrome, reactive attachment disorder and many others, is an unending battle at times. It’s a battle with your child, for your child, with your school, with professionals, with neighbors, and sometimes even with close friends and family.

There’s a way to find strength, even when you feel too weak to go on!

The Strength You Need.

Sometimes all the strength you need to face another day, is in finding out you’re not alone. There’s incredible healing power in discovering this truth. In fact, it can be more powerful than any seminar, book, or podcast could provide. We’ve found this strength. It’s precisely why we believe so heavily in support communities and leaning on others who are going through the same struggles in raising children with special needs.

It’s why this blog exists. It’s why our entire organization exists. We’re here to listen and help because we know how defeating it can be. But we also know the hope you have. We know how much you love those kiddos of yours. We know how much your heart beats for them. We’re here to encourage you when it gets tough. You are not alone!

Tell us about you. Share your story with us. Send us an email or leave us a comment on our Facebook page and tell us about the struggles you’ve gone through. We make it a point to respond to every comment, Facebook post, tweet or email. Let’s talk about your situation and find strength together. There’s hope in “together.”

Question: Are you in the trenches of raising a child with special needs? Share your story with us. You can leave a comment by clicking here.

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  • adrian welling

    I so need support! I am tired of being screamed at and disrespected. I’m tired of being lied to and stolen from. I’m tired of the hitting and the running and the manipulation.

    I’m tired of making excuses and giving explanations. I’m tired of the hyper vigilance required at every family outing. I’m tired of sitting in the car through the meltdowns, or staying home because he can’t cope.

    Mostly,I am tired of having to prove every day that there is nothing he can do to make me go away. He puts alot of thought and effort into trying to prove I’ll leave him. I wish he could channel that effort into believing I’ll stay!

    All I want is to provide him with normal kid activities. It kills me that he can’t handle them. I hate hearing “it isn’t fair!” because secretly I believe that too.

    I love my son, but sometimes I feel like I can’t do this anymore. Nothing works and I’m failing him. And I feel so depressed.

    Thank you for sharing your blog. It’s really been a lifeline.

    • Adrian, we totally understand where you are coming from. In fact, it sounds like you’re describing some situations we’ve experienced in the past. Hang in there. This blog exists as a way to bring hope and encouragement.

  • caroline

    I feel like bawling right now because we had a terrible week having to try and explain behavior to people who should accept us and the situation we are in with 3 special needs children. It broke my heart as the stress of embarrassment imploded our family. It is so unbelievably helpful to read this and remind myself we aren’t alone. Thank you. I really needed this.
    Hugs to you all!

    • Caroline, so sorry you and your family are in that battle right now. We understand. Keep fighting the good fight even when it seems like everything is against you.

  • Therese Tice

    I get so discouraged at how much it takes just to give our son Nicholas, who has involved Cerebral Palsy due to a very traumatic birth, a bath!!!! My husband and I have to undress him on his bed and carry him into the tub. ( Oh yes Nick is 20 years old and is a full grown young man and is heavy. ) It takes so much ‘ rallying’ to get psyched up enough to even do this basic task for him, so he can be nice and healthy and clean. There are so mmany other things too…He is super social and trying to figure out summer vacations is a nightmare!!! So sad sometimes. I feel like I just can’t do enough and then … OH THE GUILT!!! It can be really overwhelming!!!!

    • Therese, we have a very close friend who is walking the same road as you and your husband are. It’s very defeating and completely overwhelming. We have even gone through some of this with our 12 year old son (in terms of having to bathe and dress him when he’s non-cooperative) and it completely drains the life out of you and takes our attention away from other children. Keep your head up. I know it’s defeating and frustrating. Keep fighting this battle. You may not see it but there is a light at the end of the tunnel.

  • Mindy

    I have four kids 3 with autism and ad/hd and my husband left me after 14 years of marriage because he could not handle the kids special needs. Every day I deal with tantrums and meltdowns I have been bitten, kicked, pinched you name it my one son that has autism is 12 and he refuses to shower himself so I have to drag him in the shower and clean him and wash his hair for him. I have felt so alone in this journey and these last few days I want to throw the towel in because I just can’t handle it. I feel more like a caregiver than a mom.

    • Mindy, my heart is absolutely breaking for you right now. I am so sorry that you have been left alone. I can imagine how lonely that is. We are in your corner and we know the battle you are in right now. Hang in there. I know you feel like more of a caregiver but deep down your child loves you and needs you.

    • Toia Lecumberri

      I´m sorry for my english, I hope you can understand what I want to tell you anyway. You have it hard, really hard. And I´m guessing you´ve heard this before, but I´m gonna tell you anyway, beacause I truly believe that God doesn´t give us what we can´t handle. So, I´m still guessing, you must be sort of a superhero. You can handle it, obviously you´re doing it great, even if it doesn´t feel like it sometimes. You didn´t throw the towel and you´re still there for your children, that fact alone is awesome and if we add up that you manage to care for every need they have, wow, you´re my hero right now. You’re not a caregiver, you are a wonderful mother and capable of doing what is impossible to even think for most of us. Sometimes it may seem you don’t have the strenght, but you do, you really do. You´re children are alive and well, and all thanks to you.

  • Judy, thanks for your honesty. Raising your grandchildren is a difficult thing. I can imagine how tired you must feel at times. You are blessing your grandsons life more than you realize. Thanks for your encouraging words!

    • Judy Lee McCulloch

      Thank you so much, Mike. This ministry is unique and a wonderful support. You have certainly followed the lead of the LORD and continue it in His wisdom and strength. Thank you so much. May God bless you abundantly.

  • carol

    At 19 I had a tubal pregnancy that burst. Doctors explained that Id never again become pregnant on my own. After 3 failed attempts at IVF we chose adoption. My beautiful baby girl came home with us from the hospital in Jan. 1999. Three weeks later her BM and ‘friend’ came to my home and reclaimed her. See, the BM was given $750 during the adoption proceedings while the agency got close to $30,000. BM felt she was entitled to more money and could sell my daughter to another family. For 5 months I fought the system, begged and pleaded with the BM, stayed up for days on end trying to save my child. CPS stepped in and because BM didn’t have a car seat, placed the baby in foster care. After the BM produced the required car seat, the baby was placed back in her care. The first 5 months of my daughters life she lived with no less than 10 different ‘families’. In the end, she was found in an abandoned warehouse living in a baby swing with a bottle tied to her neck. It was determined she had been left that way for several days. After hiring lawyers and jumping through all the hoops we were able to bring my daughter home at 6 months of age. The damage was done. She was alive but, her eyes were dead…flat…unresponsive to smiles, tickles, giggles, coo-chi-coos. I thought all she needed was love…God knows I had a TON of that to give her! And I did. I never let her out of my sight and I held my baby hour after hour, day after day and slowly she became a little more ‘typical’. Little did I know the nightmare that was to follow. As an infant she had some ‘odd’ behaviors. NOTHING bothered her. She just seemed so independent…like if she could walk, she wouldn’t need me at all. We would laugh and joke about how EASY this baby was. Very rarely ever cried. If you laid her in the crib and said ‘go to sleep’ she did…she just never ever complained or voiced any objections to ANYTHING. Took away her bottle on her first birthday. Never asked for it again. Not ONCE. Potty training took 2 days. Gave her ‘big girl’ panties and after one mishap she was potty trained. I began to see flickers of anger at age 2. She was my only child so when friends and family told me ‘oh that’s normal at 2’…I believed them. When I couldn’t get her to stop raging over the peanut butter being on the wrong side of the bread…I just thought I was a bad parent. When she slapped me so hard waiting in line at the airport that my glasses broke into 4 pieces…I was ashamed at what a bad parent I turned out to be. I was told over and over all I had to do was _____________. (insert well meaning advice) If they told me to stand on my head and gargle peanut butter, I would have done that. By 3 our time out chair had spent so much time flying across the room at me I thought it had grown wings. At 4 years of age my beautiful child stabbed me with a kitchen knife because I wouldn’t get off the phone when she demanded. How do you tell anyone your 4 year old put that scar on your face? My husband and I became prisoners in our own home. There was no one that understood. We did everything by the book and nothing would stop her anger and rages. In preschool the teacher took me aside and gave me a card on domestic violence because my child had told her my husband beats us. Not true. He was and always will be a saint in my eyes. By the time she was in 1st grade we had ZERO friends, most of our family hated us for what we were ‘doing to this poor innocent child’ and neither of us were sleeping more than an hour a night. At 7 they finally put her on meds to ‘help her calm down enough to sleep at night’. The first night with medication she DID sleep through and so did I. When I woke up I was frozen in fear. I was so sure she had killed herself during the night I couldn’t even get out of bed to check. I had to call my husband home from work to check on her. Medications cause side effects. One of which was OCD. her issue of choice was baby animals. She would climb out of a second story window to try and ‘rescue’ bird eggs from nests so she could raise them. Years went by, meds were tweaked, I pulled her out of school and began to home school her. We found a Dr. who believed in RAD and placed her on a medication that did wonders for her. She is now 16. The past 15 years were a nightmare that is beyond belief. No words could ever convey the sheer terror we lived through. Unless you have experienced the rages, the isolation, the guilt, the fear, the constant battle to just keep everyone in the house alive for one more day…there is no possible way to understand. I’m not sharing this to help anyone understand the pain and the trauma of having a child with special needs, if you’re reading this…you most likely already know. I am sharing this because today at 16 my beautiful daughter is an accomplished pianist, a lovely equestrian, has a PT job, has never been kissed and wants to be a large animal vet when she grows up. There is a light at the end of the tunnel. Stay strong, remember blame has no place in your world and guilt will heal no one. You CAN do this. You are not alone and you are stronger than you think.

    • Carol, I cannot begin to imagine what an uphill battle you and your husband have had to fight. But what an awesome story of hope. Thank you so much for sharing it! So glad to hear how this story has turned out. Amazing!

    • Patty_L

      Carol, thank you for sharing your story. It gave me hope tonight.

    • Dawn

      Wow, what an amazing story. Thank you so much for sharing this!

  • Robin Weisbrod

    The only thing that saved me 20 years ago, when I adopted my stepgranddaughter, who had FAE along with the Alphabet Soup of Mental Health diagnosis, was the Grandparents Raising Grandchildren Chat Room and Board on AOL. I was NOT alone and had others who “got it” and supported me NO MATTER WHAT. All these years later, these women are my sisters, their grands, my grands, their spouses my siblings. Thank God.

    • Robin, that’s such an amazing story. So glad to hear of the support you have!

  • Bonnie Comer

    I am a foster/adoptive mom currently in the trenches! I have 3 toddler one with PTSD and RAD, one with fetal alcohol issues and one with Me this related side affects. I think about quitting every day. Everyday is a battle in my home and doing anything normal never happens! Thank yoi for this!!!

    • Bonnie Comer

      Oh auto correct lol… me this … meth

    • Bonnie, we understand. Hang in there. Don’t give up. We’re cheering for you!

  • Carol Kohlberg

    I am an adoptive mom for years now. Biological Siblings. It is the alphabet soup of diagnoses, including RAD, FASD, PTSD, ADHD… Someone said you need to get you life together and stop being in crisis all of the time. I chuckled and said I have three kids living with significant needs, my life is always going to be in crisis. I don’t really believe that, but it was clear to me that this person had no clue what I go through day in and day out, like an episode of Ground Hog Day. I have used every word you mention, done was my most recent. We have had other things happen, that make it twice as hard. One of the boys has cancer, my husband almost lost his leg, and has now lost his job. Because of the type of behaviors we see with RAD and FASD, and how the brain works, it doesn’t change. I have a wonderful support community where I can go and vent or say one word and they get it. I was prepared for a lot, but the one thing that has hit me hard is how lonely I would be. Thank you for writing this blog, we are a unique group of parents, and it is so important to provide support for each other but also to educate those out there that are non believers or just don’t understand what it is like.

    • Carol, it’s our pleasure. There’s no greater way to find hope than by leaning on one another through the tough times!

  • Tanya Miller

    Hi I am raising my grandson with FAS.. One of the hardest paths I have taken. I can completely relate to this. People give my guy dirty looks as he tends to get upset and cry and call everyone “Stupid” when everything does not go the way he would like. Other friends have told me wow does he ever fight with others. When in reality he is fighting with himself. “You cannot make excuses for him” .. “You have to treat him like any other child”.. just a couple things I have heard. You bet this is a battle I have to keep reminding myself not to get frustrated with his outbursts. When he smiles though he does so with his eyes and all and melts everyone’s heart. This is his battle yes but he is not alone. Thank you for sharing this. 🙂

  • My son does not have FAS, but other behavioral disabilities I had hoped would subside as he got older. They got worse. He’s now 20 and I have completely lost it. I struggle with my own depression/health issues. I’ve been trying get my life on track, but feel as I am permanently derailed. This has been ongoing and with his refusal to accept help I could use myself is beyoond frustrating. Giving up is the only option left to pursue.

    • Mariposa, so sorry to hear you are going through this. Do you have someone you can reach out to and lean on? Hang in there! We know how hard this is.

      • Only for a shoulder to cry on. No one has any solutions other for me to send him packing. It might just come to this, but for reasons I cannot post here makes that option not viable at this time.

        • Chrissy Shelton

          Mariposa, how are things now?

  • Tammy Luther

    You first need to remove normal from your vocabulary period ! They are special needs for a reason and can not handel stress and high emotion situations they way you want them to or expect them to. I have autisum and my two kids are autistic. I do not assume one will react thet way i would in every situation even though will all are autistic. Why would you expect your kids to ? This is your core problem. Stop putting expectations on them they cant or wont reach, you will have less stress for the bolth of you. Do yourself a favor and start. Listinong to the counsels and teachers. Just hecause it doesnt work this year or next or the next you can give up because it doesnt “work ” or change when you want it to. (The same lesson you were trying to teach yoyr son by they way ) . Lead by example start listening..

    • Tammy, I can’t tell if I mis-read your comment or you mis-read this post.

  • Brooke Tisdale Wilson

    My son is 4 and Non Verbal Autistic. It is so hard to parent day by day not really knowing what he wants. He goes to the kitchen and I have to guess is he hungry or thirsty. Once I get him to show me he wants a cup then I have to figure out does he want milk or juice. Sometimes I only know once he theows,down his cup. It is like that all day. Plus I never know what will set him off. The other day it was his raincoat. He has never had a problem with it, but this time he cried and screamed when I put it on. I have a typically developing 6 year old so I know how life could be. I feel sorry for myself a lot. Lately though I have been thinking how hard it must be for him to have to deal with the way he is everyday for the rest of his life. I mean imagine you want a cookie and you couldn’t say it and you had to try to get someone to understand. Then you multiply that by everything he wants and needs all day long everyday I love my son to death and hate this for our family, but especially for him.

    • Brooke, we have some good friends who deal with a very similar situation. Such a hard uphill battle to fight. I can tell you have a deep mother’s heart just by what I read in your comment. Keep loving him. I know this is hard.

  • Jeanine, we know how desperate this road feels. Keep your head up. You’re not alone. Feel free to reach out to us over email for anything at all. We are cheering for you.

  • Jackie Walechka

    We have two adopted children both girls the oldest one is turely a gem, its the second one that pushes our buttons. She has RAD, ODD, IED, CP, ASD, Pituitary cyst and I know I’m missing something. She came to us as a foster care child at the age of 18 months. She keeps us on our toes that’s for sure. She is almost 16 and we are working on becoming a adult and what that might look like. We have had so many people working with her from very young. I could write a story here but I won’t do that today. I want to wish everyone the best of luck.

    • Hey Jackie, thanks so much for sharing here. That’s what this blog exists for- to give a voice to parents of all makes and models. 🙂 Hang in there. We know the struggle you’re going through. You are not alone!

  • Dawn

    Thank you for the blog. Sometimes just knowing you’re not alone is a relief. I understand providing the excuses for the behaviors, or just sitting down and crying . . .

    • Hey Dawn, sorry the late reply…we’re so glad our blog can help!

  • Beverley Hodkinson

    This was just what I needed to read today!! My adopted daughter is 11 and has f.a.s,she has been aggressive ,swearing and particularly difficult lately!! Her words can be vicious towards me and her siblings!! I also have a foster child under assessment for autism !! Today I lost the plot and screamed and shouted back at my daughter( knowing this would not help) reading this just helps in so many ways!! This and talking to a friend of mine who has similar issues with her children!! Gives me the strength to go and hug my daughter and let go and start over!! Thank you!

    • Beverley, that’s so great to hear. I am so glad the post could help. Make sure you tune into our podcast next Wednesday, February 3rd because we’re discussing this very topic with Ellen Stumbo who founded Disability Matters.

  • Hope for Youth

    I am a single mother of an 8 year old autistic boy and a 2 year old neuro-typical girl. My hands are most definitely full. Life is a daily struggle, especially since by son has aggressive tendencies. I do my best and get some help from my parents, who I live with for financial reasons. However, my step-father is the bread-winner and my mom is physically disabled, so there is only so much help I can get. I work when I can, but this is hard too as I have to be available for sickness and appointments and meltdowns. I don’t have a lot of me time. But some how I manage from day to day, to the best of my ability.

    • Cynthia, thanks so much for sharing honestly here. We understand what you’re going through. We’re in your corner!

  • Betsy

    I just came back from taking the kids sledding. My son, 9, was adopted from foster care and my foster daughter is 5. I am a single mom and this article was perfect because at sledding all the other families were having a blast playing together and my 5 year old would not stop rolling her face in the snow and trying to run through the parking lot! We stayed for a bit but ultimately I had to drag her to the car as she had a screaming meltdown. Seriously something as simple as sledding on a hill near our house becomes drama. It is truly exhausting. I do take heart because she has come so far and is way better than she used to be, but still very demoralizing sometimes! Thanks for the article.

    • Oh Betsy, we know exactly how incidences like this feel. You are most welcome for the post. Glad we could encourage you a little. Hang in there.

  • Nora Matthews

    I tend to think our culture makes parenthood a lonely journey all on its own sometimes, and then makes parenting kids with special needs that much more isolating. That’s why I’m most grateful for those in my life who have gone out of their way in understanding that my parenting journey sometimes looks very different from theirs and offered support rather than judgement. They’ve taught me to be more open and supportive when I see anyone parent any child.

  • Nikki Caputo Hankins

    Thank you so much for this read! I have not fostered or adopted, but I have 2 children with special needs. My daughter, now 18, has social anxiety disorder, bipolar, and has suicidal ideation issues. My son, now 6, has ADHD. EVERY DAY is a struggle. I often wonder what I did so wrong to end up with 2 kids that have mental health issues. Where did I fail? I have decided that it doesn’t really matter. What matters is meeting their needs. Mental health disorders are so difficult for people to understand. They can’t see them, there’s no “rhyme or reason for them”. But they are real. They can be very severe, and they need special attention, too. I am often exhausted and discouraged. The daily struggle with the schools, the judgemental looks, the roller coaster ride at home… I find my strength in God, and in other people that know about mental health disorders. I truly appreciate what you guys do here. It is always amazing to read your stories and posts. Thank you for continually lifting me up and being so understanding and real!

  • Robert Freeman

    We adopted two boys through foster care, all went well till the oldest hit 12 years old. He was just diagnosed with DMDD, FASD,ADHD, ID Mild, GAD. When we got him at 18 months he had a lead level of 30. It is just so draining, I have not found any way of parenting that works with him. He destroys everything and doesn’t remember doing it. If he does remember he lies about it. He throws a full blown tantrum when ever he doesn’t get his way.He only behaves this way at home. Thankfully in public he is respectful and obedient. He has every one fooled so when I am just “done” they don’t get it. Any suggestions on parenting.

  • Amber Altena

    This is spot on. I have a 7-year-old daughter with autism and it is a daily battle to get her what she needs. Right now that am in the middle of a battle where the OT and ST who see her every week are trying to convince me she has behaviors and needs to be on medication. We do not have any issues with meltdowns at school or at home, so I suggested they alter their approach. They will not. Her teachers in school say that this is her way if communicating, we just always need to be asking why she behaves the ways she does and finding that out will help her so much! I feel like we have this battle every year and it is just so exhausting.

  • Anna Lopez

    Thank you! I do have a question that has been in my mind a lot lately. How much and when to tell people what IS wrong with your kid? Some of them wouldn’t believe you or understand if you explained to them. But, some of them would. I am caught between not wanting to violate my child’s privacy and yet wanting people who are around her, to understand why she is the way she is.

    • Anna Lopez

      Oh and I just emailed you and it was returned undeliverable :-/

      • Hey Anna, so great to hear from you! Have you read our post on How Much Information Should You Share? That may help. Also- so sorry that you got a returned email. Did you try through our About Us Page? Let me know. You can also leave a Direct Message on our Facebook Page.

        • Anna Lopez

          Thank you, I will do that. I just read the article above that you referenced. It makes sense. I do not send my child to public school, we participate in a homeschool program. I am trying to figure out how much of her information to share there. I feel bad, the other kids do not really like her and she is having trouble in a couple of her classes. I have told her teachers information somewhere between “back cover” and “cliff notes.” I only want to tell them on a “need to know” basis. But I wonder about one teacher who is more stern, if she’d be more lenient with my child if she knew she’s not just “spoiled.”

    • momabr/mmabr2

      right?!!! it’s hard. i want to share with people so they understand what triggers stress my girls and why i don’t let my kids that have tested positive for meth have candy. people just don’t get it!!!!!!

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  • Sarah Van Dyke

    So timely. It’s amazing how lonely one can feel in the day in/day out struggle of “normal” routine. Thank you for your community. I truly find encouragement here everyday.

    • Hey Sarah, we are so glad to hear that you’ve found community here.

  • Joan Blaschke

    Hello: i am divorced mom with 2 bio kids 26, and 23 and i started doing Foster Care 10 years ago. Since then i have adopted 2 half brothers ages now 7 and 2. One i brought home from the hospital (CJ) and the other i got when he was 12 days old (JJ). I also for 23 years have owned my own in-home daycare, so i can be home with the kids. Both boys were born with DVM delayed Vision Maturation, by the grace of GOD both boys can now see. CJ is 7 and the challenges are incredible: he has more diagnosis than i have ever imagined a child could have. I work closely with 20 doctors, schools, we are a very OPEN BOOK. But my family doesn’t get it: i am the youngest of 11 children 3 siblings have passed but 7 are still around and they don’t understand why i agree to put him on medications, why i am such a heli-copter mom, why i let him get to me, push my buttons, they just don’t understand ..

    • Hey Joan, we totally understand where you’re at with this. Keep your head up and your heart full. You are not alone!

  • Bria wuest

    This was disturbing to read. I have a disabled daughter. Its not a battle it is a blessing. You make it sound terrible to raise a special needs child. Of course there are things that are different and more difficult for your child but each milestone should be looked at as a miracle and a blessing. I have never looked at my daughter as a battle. She is my miracle my gift from God.

    • Patty_L

      I find “shoulds” are not very helpful when raising a special needs child. I think everyone is doing the best they can with the tools they have, but everyone’s perspective is valid for them. I’m so glad for you and your daughter that you feel the way you do, but there are many days I’d like to give my gifts back to God.

  • Debra Parry

    I am a single grandmother raising my grandson! He will be 9 soon! I have lost alot of family members due to them not understanding his disabilities. It is groups like this that give me the strength I need. I feel very alone and so very tired but I would not have it any other way! I learn so much from reading everyones stories. Thank you all for sharing your stories.

    • Michelle Sackett McKinney

      Love your heart for your grandson! You are doing an amazing job and we are love being able to walk beside you!

  • momabr/mmabr2

    my hardest battle at this point is “living in the bubble”. my hubby and i have 5 littles; 1 adoption complete, 3 in the works, and fighting to keep the last. our children have been exposed/tested positive to drugs, sexually abused, born 3 mos premature and almost died, and shaken baby and almost died with lifelong disabilities secondary. we have had an average of 3 visitors per month for each child (except for the 2 oldest) who all want “to check on their progress”. 2 (almost 3) have had PT and OT. we have accepted that our children are “their own normal” and believe that every child has the potential of someone finding SOMETHING WRONG with them. our adult biological children are as different as night and day, but never once did we think while we were raising them was anything wrong with them, even when our son’s gradeschool teacher tried to tell us she was worried he had a type of hyperactivity disorder or learning disability…he is now a marine with top secret security clearance and can solve a rubik’s cube behind his back in less than 2 minutes. our daughter is a wonderful mommy to our 2 grandsons. we just think it’s a travesty how long the system takes to process an adoption so that we can tell everyone to take a flying leap and just let us live a normal family life and let our kids be kids and not under the microscope

    • Michelle Sackett McKinney

      We know. The process is so frustrating. We do need some of those services but it is hard when someone is constantly looking over our shoulder.

      • momabr/mmabr2

        and what makes it tenfold harder for us is that my hubby and i are both seasoned nurses and our family lives outside of town; during bad weather we look at 1 hr drive time one way….i would rather be home working myself with my children one on one instead of spending half my day to drop the ones off at daycare that don’t need to go with us to a PT/OT appt. can be somewhat counterproductive at times….thanks for the ears!

  • Kristen Plamondon

    Perfect timing to read this. I have two adopted children and one bio. Our oldest has autism, middle has RAD, FASD/Exposures and all the trauma labels that come with that, and our youngest has Down syndrome (he’s the bio). We’ve known 9 therapies a week, two many ambulance rides and too many ER doctors know us by name. Lonely is the perfect word to describe this process, I find myself very quiet when out with friends, just letting them talk of their lives because when I open my mouth to talk, I notice their chin dropping and them just staring at me in disbelief….it’s trained me never be real with people, in fear of losing a friendship. And can we just mention marriage? Oh my! I’m married to the most amazing guy, but honestly there are many days I could care less. We both fight for our children fiercely and often there is no fight left for us. While we do regular weekly date nights, they look more like two exhausted parents staring at a wall until it is time to pay the bill go to sleep in order to do it the next day. And the whole…you need to invest in your marriage sounds beautiful when you are not paying for weekly counseling for three children, plus your own EMDR, and other expenses we all know come along with diagnosis. Yet, I can absolutely say that we consider it a pure privilege to be the parents to our children, we like to call it the “awful privilege”. While it sucks everything out of me, being their mom has been how the Lord has refined me and helped paint the depths into His masterpiece.

    • Rhonda Bowles


    • Oh my goodness, by heart breaks with yours. I know that whole sitting at the table with friends as they chat away. You can be real with us. We can take all of it. We are with you.