Unless you are raising a special needs child, you don’t understand. The daily struggle is real. Try and imagine the work of exhibiting patience, discipline and love while a child presses into you with challenging behavior day after day.
Note: This is an anonymous guest post. A reader wrote to me with her experience. It touched me and resonated with me. I decided to post it to share her experience so that other moms, struggling in the same way, might feel understood and not alone.
Unless You are Raising a Special Needs Child, You Don’t Understand
I went into parenting expecting one thing – anticipating normal. What I was given was not your average child with your standard needs.
Instead I was given a child that would become a tool of refinement in my life.
This little boy would struggle. He would make our family struggle. There would be marital fights surrounding his life. Worry, anxiety and anger would stem from his existence.
Love would also come. Day after day. Through the challenges it would persist because love is a choice. I choose to love this child and raise him the best that I know how, but it doesn’t negate the pain that also marinates within.
Unless you are raising a child with special needs, you don’t know what it is like to take everything you thought you knew about parenting and throw it out the window.
Standard parenting strategies work with my other children. Consistency and loving discipline are the key. Not with this child.
This child doesn’t respond to time outs.
He doesn’t respond to typical consequences.
Spankings only exasperate the situation.
Rewards do little to help improvement.
New strategies are needed, and they are hard to discover and hard to implement as a united front. There is a lot of trial and error. Failed attempts at discipline are the norm. Defeat is a reality. Yet determination and love persist.
Unless you are raising a child with special needs, you don’t know what it is like to yearn for normal.
You don’t know what it like to wish your child could handle being on a sports team without causing destruction in his wake.
There is a longing to be able to go to an amusement park or parade without anticipating a melt down. The crowds will be too much. He will get overwhelmed. He is going to lose it. “His brain doesn’t process the noise like other children’s brains,” I try to remind myself so that restraint trumps exasperation.
You don’t understand what it like to ache for your child – to want them to have real friendships. I always anticipated a home filled with lots of friends and lots of activity. It’s so hard when you don’t see your child connecting with others.
There is also the challenge of knowing that your child does need to experience consequence for his actions. Taking away play dates might be a necessary reality. If you can’t treat your family with respect and kindness, how can we trust you with others? You can’t yell at us all day and expect reward for that behavior.
Unless you are raising a child with special needs, you don’t know what it’s like to try everything.
The countless appointments to doctors, counselors, and specialists is daunting. Will this diet change his behavior? Did we find a supplement that works? Is the therapy making an impact? Do we have to medicate our child? The constant questions that bombards a mind is exhausting. The time, money and efforts of all, will it make a difference?
Whether your child has ADHD, oppositional defiant disorder, sensory processing needs, autism or some other disorder that seems to be plaguing our children, as a mom of this child with special needs you live in a state of anxiety.
I am constantly questioning whether I am too strict or not strict enough. Am I doing all that I can? What is the cause? What is the answer?
The public meltdowns are embarrassing, and the looks of disapproval are heart breaking.
They don’t know. They don’t understand the pressure you are under every single day raising a child with special needs.
There is no way they could know the painful cries of your heart.
What would our family look like if this child wasn’t there?
How can I dislike my own flesh and blood?
There is guilt for these feelings. There is a desire to flee. You never would, but you fantasize because the day in and day out is exhausting. It has changed you. It has changed your family.
Unless you are raising a special needs child, you also don’t understand the determination. It takes perseverance to choose to show up every day.
There is a lot of effort to chose kindness when you are filled with anger, joy when you are feeling defeated, and hope when you can’t see the light at the end of the tunnel.
I am a mom. I will persist. That is just what we do. Defeat isn’t an option. Hope abounds. Love will triumph.
Note: I like to respond to and publish all comments. I don’t mind if people disagree and converse about these differences in a respectable way. However, I have received some comments that are just mean and have an attacking tone. I am not going to allow those comments. I want my site to remain a safe spot.
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I am the sole caregiver for my husband of 33 years who suffered a traumatic brain injury a little over a year ago. We are not young parents, I’m not raising a child with special needs. But I understand completely. This Mother not only described her life, but she also very poignantly described mine.
I’m so glad you shared this. I can’t imagine how hard a change like that would be in a spouse. Thank you so much for your willingness to love him through this and continue to walk beside him despite all the changes. I cannot imagine it is easy, but it is love. Thank you!
As a Mom with a kid who has special needs (he has autism and spd) I can attest to the many times I’ve cried by myself just wishing I had someone, anyone who quite understood what we as a family and I as his mother go through raising him. He is beautiful and so full of life and himself lol but there are so many times that my heart aches for him. So many times I feel like I fail. So many times I wish I had the all of the answers, heck any of the answers. Being a mom of a special needs kid has never been nor will ever be easy, and to date the best advice I can give another mother whose struggling is just give it your best, even when you feel like it’s not enough because I promise when those little arms drape around your neck and you hear “love you mommy” it’s the best feeling in the entire world.
I’m so sorry it has taken me so long to respond. Life got away from me a bit. Such good advice. Showing up every day and continuing to try makes the difference. I’m so glad you recognize the beauty through the pain. Thank you for encouraging others.
Great article, a need for more blogs like this, transparency is key to reducing stigma, I have a son with ASD, MLD and complex multiple medical needs. I am setting up a CIC for parent-careers to connect and support each other. Our face book page is @theelementrradeoff and will be ready for April. Let’s support each other xx
Agree that creating an awareness and understanding is so crucial so that people can have the support. Thanks for being part of the solution!
for the child’s sake. I hope you consider what it is like ot be your child.
I think that’s a really good reminder!
I definitely understand the point here, but do not believe that was the intent for this article. Being judged off this article is basically making her point even more clear.
Thank you for your thoughts. They are appreciated. 🙂
Clearly from someone who hasn’t spent time with a Special Needs child.
Yes. I think it’s hard for anyone who hasn’t walked in another’s shoes. Thanks for commenting.
I think this person needs to consider a. what it is like to read that comment, as a parent, as the author, being vulnerable.
B. Whether Their comment is helpful- to me it is not as she just wrote all the ways she tries to help the person- which requires empathy, understanding and love. She considers what the child faces and sees if there is a role they can play to make their lives better.
C. Whether they’re projecting their own disappointment at how they were (or are) parented-some sort of blame game which exacerbates the feelings the author has described- these flippant comments get to the crux of the article… lets lay some sort of issue onto the parent how about another guilt trip?, judgment.
Finally, since this is a religious based blog: I recommend the commenter study the “walk in another’s shoes” parable a little more closely, yourself. I think the author is going through a lot of heartache by constantly considering their child. Why make that journey harder? Get a good therapist.
Thanks for your thoughts on this comment. We can all work to ease the burden of other people’s journeys. Life’s not easy. I agree about spreading encouragement.
WOW JUST WOW so well put!! I am an adoptive mama lama of an autism warrior with a butt load of medical issues stemming from abuse and neglect he suffered from birth to 4mo old. All I would like to say as a mama who made the choice to be a special needs mama it is worth it. Every day after day of battles and let downs and judgement and misguided advice…. It is worth it. To your little warrior trying to navigate this world that is so frustrating to them you are it! You are everything they need and want. Keep up the amazing work mamas. Your warrior need you. We got this!!
Thank you so much for these encouraging words. You are so right. These kids need advocates that are rooting for them and doing all they can to help teach them within the restraints of their bodies, providing the best life possible. I love your words and really appreciate your encouragement.
Thank you for this story. I was shaving such a difficult time about 15 minutes ago and had to turn to some support and I feel so relieved. This is better than going against the force that is not with you. My daughter is 14, high function verbal IQ but two year old level function with judgment and executive functioning skills/ that combined with the age, raging hormones, Opposional defiance-severe, Attention deficit to the point she forgets to dry herself after bathing, does not flush toilets and forgets she was thirsty or had to pee and had accidents etc. she also had Disruptive Mood. Dysregulation Disorder, unspecified tic disorder, seizures, thyroid goiter, anemia (picky to eat and a glutton for snacks), and kidney stones. We don’t know yet if she has lupus and are investigative this. Imagine her health issues, her own sensory dysregulation bouncing off the wall all day triggering extreme moods from running and belching to cursing and raging like a bull because her blanket was washed or because she needs to bathe and refuses to have water touch her. Imagine the rage to have deodorant on her… the struggle is real for us but I can’t imagine the struggle out children or special people in our lives must be going through in their eyes and in their own bodies knowing they cannot control it or demonstrate what they feel like others do. I wish everyone so much love and compassion and give God never- ending thanks for all of us who continue to love and give keep it moving while looking up. It’s humility what I call it!
Wow – There’s so much going on with that girl. You are so right that it must be so hard to be in that body and compassion is key. Thank you for that reminder. It doesn’t down-play the hardships that you go through also. We learn and grow through these struggles, but it doesn’t make them easy. Thank you for sharing your own story. I hope you find hope and community.
My husband also had a Trumatic brain injury and I have a special needs child. I find it harder to deal with caring for my husband. There is a support group on Facebook for spousal caregivers.
I imagine that’s true. Thank you for sharing the resource. I think connecting with others in similar situations is so important!
You are amazing thank you so much for sharing this, I am a nanna and I listen to my gorgeous daughter tell me about her challenges with my grandson and granddaughters all I can do is surport, I agree more needs to be available to let people know they are not alone and they are truly doing an amazing job of loving every minute of every day ❤❤❤❤
Thank you so much for commenting and being a support system to your daughter. It really makes a difference!
I also had a child with specials needs and a husband with traumatic brain injury. My child past a few years ago and it’s been extremely difficult. Let’s just say life has a way of making you bitter or better. But the saying is much easier. Life has a balance. Sometimes your bitter sometimes your better. Depends on the moment.
What an incredibly hard journey you’ve been on. What great insight – sometimes you are bitter sometimes you are better. My best friend has been battling cancer this year, and I spent some time with her in the hospital while she was getting an infusion. She had a smile on her face and was so gracious to everyone who crossed her path. I noted this. She said something along the lines of what you said, “I have cancer no matter what. I can choose to be a miserable person or pleasant.” I so admire the strength in her, and yet of course it depends on the moment – at times being bitter and at times being better. Hopefully we all choose a path where the better overtakes the other. Thanks for your thoughts.
Jayne, please look into neurofeedback for your husband (and yourself for help with stress management). Neurofeedback has been an amazing tool for brain injury recovery for so many people. It doesn’t matter how long ago the injury occurred all brains even severely damaged one can benefit. I learned about neurofeedback when it was recommended for my child after medication and counseling failed. I was blown away by the results and decided to buy a system and become a trainer so I could use it for myself and the rest of my family. two years after I became a provider, I was involved in a car crash that left me with a concussion and moderate brain injury so I got to see first hand how helpful it was for the brain fog and mental fatigue also for keeping my spirits and motivation up during recovery. It has been a life saver for so many people. It can be very affordable especially if you rent or buy a NeurOptimal system and use it at home.
Thanks for providing this idea. I don’t know tons about it, so I definitely encourage people to do their homework. However, what I have heard is super hopeful. Thank you for sharing your experience and providing an idea that might help this family…and others!
My so did Neurofeedback and it was great! Do you know where we can rent a system?
I think I know someone who did that. That’s good to know.
I know someone in Canada if you are there…. who rents them out.. Elinor Bazar
Canada is really big, the second largest country in the world. You would have to be a bit more specific than that.
passing along to you
I can totally relate. I am a mom of an adhd Odd,Dmdd, bipolar 14 yr old son. Also anxiety and depression. HE is indeed special needs!! You truly can’t understand unless you are a mom and raising a child with special needs yourself! I don’t think anyone can understand the unconditional love we have for our children. It is so easy to offer advice . Many people are so judgmental and they assume A LOT!!! Every special needs chuckled and situation is so unique and different .There is no cookie cutter answer, solution to their needs and ours!!
Every single minute of every single hour in every single day is different!!!!!! A different challenge. Imagine never knowing what to expect, imagine never being able to fully control what is going to happen, imagine , not having. the answers, not being able to make things good, or happy for our children!!!! Its pure HELL!!!!
You are so right that each situation and child is unique. It’s a puzzle to discover what works for your own individual situation. Hoping you can continue to persevere in your unconditional love despite the challenges that present. Thanks for commenting.
Same diagnoses here! Enduring the judgment and misplaced advice is sometimes as hard as trying to find the answers. Living in fear every moment that something will go terribly wrong. It’s typical parental anxiety multiplied exponentially. BUT they’re special even with their extra needs and have been given to us for a reason. Keep the faith!
Great encouragement to keep the faith. The things you mentioned are hard, and saying “It’s typical parental anxiety multiplied exponentially” is spot on.
I was just looking into that for my daughter. She had a brain aneurysm rupture at the age of 4. She is 6 now and still making strides in her recovery but I am willing to try anything else that may benefit her.
I hope it helps. 🙂
Wow, I so get this. As a mom raising 4 kids with trauma backgrounds (each with their own responses, challenges, skills) I gotta give a thumbs up. We do so much to help educate ourselves, change our lenses, try to help each one learn to use their strengths and learn from their weaknesses. I frequently say I would have never understood if I wasmt living it, but I also hope I would have an open.mind when someone was struggling. The judgement from schools, county agencies, even the professionals that are supposed to be helping us can be overwhelming. What I have learned is to know we are doing the best we can, just like our kids are. I try to educate people calmly and with the respect I think we all deserve. Some are receptive, a lot aren’t. We are slowly chipping away at the barriers that exist for our kids, and slowly getting the point across that a square peg does NOT fit in a round hole!
I do love how you are approaching your conversation with people with calm and respect – chipping away at the barriers. Learning to effectively communicate so that people want to become part of a team around your child is so important. Keep on keeping on to help create awareness. 🙂
I’ve often told people that the people on my most admired list are those who adopt special needs children. Had I not had two children who are special needs, I would not do this. I just don’t have it in me.
I hear you. I love hearing stories of people with this kind of selfless, sacrificial and endless love hearts. They are incredible, so if that is you reading this – thank you!
My daughter too! Aged 5 whilst at school. No warning, no buildup just collapsed. The rupture caused extensive brain damage. She looks “normal” but life is so difficult xx
I’m so sorry for this pain. It must be hard to see the change.
Hi there.I am the Grandmother of a 6 year old Autistic child,and although he’s my grandson I do agree that one can never understand how carers have an immense burden of raising special needs children unless they’re Caring for one themselves.For one,it’s heartbreaking to Witness your loved one,how will he cope as he gets older? Although those painful thoughts come about,I feel that there is a small reward when a smile shows on his face when he’s had a rewarding day.Best of luck to other Grandparents that attempt to help out because love conquers the worst of situations.These children just need to feel they are safe and loved.They do know,
Having grandparents that are understanding and non-judgmental, like you, is so helpful to the parents. Thank you for reminding us that that grandparents see, care and experience the struggles too. You are so right that we need to love harder than we ever knew. I appreciate you taking the time to comment.
I applaud you for helping with your grandchild! I have 2 kids with autism. My mom, not my MIL would even consider offering to help or babysit. We are alone in this. Thank God my husband and I are toughing it out together. ❤️
Thank you for encouraging this grandma. You are right that that outside support is a huge blessing and not everyone receives it.
Thank you. Just thank you. It can feel exhausting and so lonely. When it feels like you find something is working for one behavior another behavioral problem pops up. Most of the time I just feel like I’m putting out fires.
It’s true that you think you are seeing progress and then there’s something new that can pop up. I do believe there is hope though as you keep persevering in your parenting, keeping firm, loving and adjusting as needed. It takes so much flexibility and trial and error to discover what works for each individual. Thanks for commenting.
I wish my sons grandparents were as understanding. While visiting them one day, he heard his granddad say to his grandmother “we don’t want him around”. My son called me to tell me to come get him. We managed to get over this, just. But I think we all know where we stand. My son wouldn’t care if he never saw them again, and I have a feeling the feelings are mutual.
I am still in that happy, happy, family should be close mood. But this is more effort on me and I am now exhausted from trying. 😩
That’s so incredibly hard. To not have supportive extended family can be difficult. Hoping there is restoration there for your family.
I also have a grandchild with neurological problems. She will soon be 10. I thought I was a pretty good parent and soon realized I knew nothing. I am so in awe of my daughter and son in law and I hurt for them at the same time. When we keep her for 24-48 hours we are exhausted and pushed to the limit. I can’t imagine day after day after day. She has come a long way and we love her very much but it does take a toll on all involved. Prayers for all to have strength and help available to them.
Thank you for being understanding and encouraging of both your daughter and grandchild. I love that you continue to help as you can, despite the struggle. These moms need more relief than moms with more typical kids. Thanks so much.
Will this help with down syndrome
I think that if this article resonates with you, then it does. Each circumstance and individual is so unique.
I am a mom of a beautiful amazing 12 year old boy with Cerebral palsy and man you hit it right on the head no one knows unless they have lived it I fear everyday for my son and I pray that he makes friends and is happy. Most days I feel I am really bombing parenting that no matter what I do or say it’s just not right or good enough. My days are long from wishing and praying for strength and smAll miracles for my baby, my night all filled with tears but through all that my heart is so big and so filled with love
Thank you so much for commenting, and I apologize it has taken me so long to respond. I got behind. I think moms, in general, are hard on themselves. Add, on top of that, a special needs child and that feeling is heightened. Thank you so much for sharing and encouraging. Praying for strength for all the mommas loving their children through hard things.
Wow! I use computer based brain training with the program Captains Log for kids w adhd, autism spectrum and dyslexia. I’m continually amazed at how most kids in. 6 short weeks of coming twice a week for an hour session are improved in focusing and memory
.. it’s great to see their confidence level raised and their new belief in their abilities.
Thanks so much for sharing that resource.
My middle daughter had a traumatic childhood, and has recently started this neuro feedback, and within the first 2 treatments, we started noticing amazing results! She
Is so much happier, less anxiety, more confident, insomnia gone, no more migraines, etc, etc! I highly recommend this treatment, it has been an amazing experience for our daughter! Our oldest daughter also suffers from PTSD, Oppositional Defiant disorder, anxiety, depression, etc., and she has always been our special needs child. Everything in this post has been us at one time or another, and another, and another(crazy how I can relate to it all)! She is now 20, and still struggles after many counseling appointments, psychiatrists, DBT therapy, medications, residential treatment, and nothing ever helped her. Now that she is an adult, we are trying to convince her to try this, but she takes offense unfortunately. Keep hanging in there parents & families, we can only do so much.
Thanks for sharing your story and experience. I am interested to hear about the positive results of biofeedback. I’ve heard of that recently and had a family member trying it. Your daughter might come around and be willing to try in the future. She’ll probably hear about it from someone else and say, “Mom, listen to this great thing I heard about…” LOL – Isn’t that how it goes sometimes. Thanks again!
Can this help children who suffer from Aspergers ?
Thanks for any help with this, Nikki.
I also don’t have a child with special needs but after 21 years of marriage my husband suffered a massive stroke almost 5 years ago and life will never be the same. There is little difference between what you describe and the challenges of life with a brain injured spouse. The loneliness, the guilt, the grief , the public embarrassment, etc. I’m so sorry for the challenges you face with your child. These are things God uses to grow us and make us more dependent on Him.
You are so right that we experience growth and hope as we depend and trust in God. Such an important reminder. I’m so sorry about your husband. I can imagine that comes with its own unique challenges as well. Thanks for sharing.
I am a mother of a child with cerebral palsy,(who has developmental delays) and a caregiver to my ex spouse ?he suffered an ABI, with 9 heart attacks in a three hour time span in 2013. Life isn’t easy for me either. But you go with the flow. For me anyways.
You do go with the flow. It’s the best solution – no need to fight against it. It is life, and we survive best when we adapt, love and learn.
Yes, she did. I can almost understand your pain, ad well as being a special needs mom to 10 year old boy/girl twins. Two years ago, their dad aka my husband who was 48 at the time, developed dementia. This was a several month decline with a nagging wife telling him all the while something was wrong. He went to the doctor, and a head CT scan was ordered. He had Idiopathic Hydrocephalus. A VP shunt was placed the next week. Unsure what to expect or what the future would hold, life got back to almost normal pretty quickly. A month later, his shunt failed and he was seizing. Emergency shunt replacement the next day which was Saturday. So far, two years later, were still rocking and rolling. Although short term memory is absent a lot, and worries of a stove left on or a door unlocked, or he certainly doesn’t pay the bills…those sort of things along with the twins are a LOT to handle. I’m still blessed though. I just pray we all stay here and healthy for the twins.
Wow. What a challenging journey. Thank you for replying to this comment to share a piece of your own story.
I grew up with a sister who at age 16 had a ‘medical accident’ in hospital, leaving her brain damaged. When my parents died I took guardianship of her, and shortly afterwards my daughter was diagnosed with Asperger’s. Life is tremendously challenging and we have to take things one day at a time. The struggle is real, and I am so, so weary. Prayer helps.
I’m glad you find peace and comfort through prayer. I know God is walking this with you,. I believe he weeps with you. Continue to love and serve well. I’m sorry for your challenges. It will be amazing to look back and see the beauty that was created among the ashes.
My dad had an aneurysm and my mom cared for him for 15 years until he passed this January. You walk a hard road! Three days after his passing my son was born with a traumatic brain injury. So now I’m walking in those shoes as well.
There is such growth in character as we learn to love and serve amidst the hardships. Thank you for caring for your son, and I am so sorry for the struggles you face every day.
I also have to add that as a parent and caregiver of a child with high special and medical needs – as well as normal functioning children, the “struggle” is “real” regardless. Yeah, at some point my children with less needs then my special needs child, learns to establish a sense of independence and is able to achieve things that my special needs child may never develop, but it doesn’t change the fact that at one point, everyone has experienced the same stress or struggle that a parent of a child with special needs experiences. I never want to be put on some high priority list simply because I raise children or a child with special needs. I just want to be a parent. Simple as that. Cuz at the end of the night, we’re still trying to raise, support and help our children – special needs or not – reach a developmental phase and state of being. 🙏🏼
Great reminder. Parenting isn’t easy, and I don’t know why I ever imagined it would be. But it is beautiful and joyful and a great picture of unconditional love. Reading all of these comments does make me have much compassion for the variety of tough circumstances people face. Some just have harder things going on at any given time. It’s been helpful for me, personally, to get perspective so I can spend more time appreciating all the good.
U have described my life 100% im a single mom of 3 & 2 have disabilities both have ADHD in 2 different forms. The oldest has ODD agression was born with failure to thrive learning disabilities anxiety eating disorder my middle child has hypotonia autism learning disabilities. They have both have had therapies since the ages of 3yrs old p.t o.t. speech& nutritional talk therapy & still continue these at 17& 16 yrs of age my youngest is 10 & has no issues at all! Shes my super star always helping me with her 2 sisters who dont understand or doesnt match or its time to eat take ur meds u need a shower helps find lost things cause they have no organizing skills. gets them motivated when im exauted to the core! But let me point out they r all 3 my pride & joy i luv them all the same. Im just saying my 10yr old is a super star that she helps more than she should & is more mature than my 17& 16 yr old! Someday they will improve! Untill then i will continue the fight untill i win helping them to succeed fully in life& leading a some what normal life where they r excepted !!!
You are teaching them (all 3) what true love looks like – full of sacrifice and perseverance. Thank you for sharing your story. You are so right to have the perspective of knowing the things will improve. Thank you.
I know exactly how you feel not only does my son have autism but my husband has a TBI from a car accident so I have a double hit. Sometimes I get so overwhelmed but I try to stay strong. I work, pay bills, do shopping ect… My husband does things whole I’m at work but it’s just a few things. Family and others just don’t get it. I have friends that don’t call me much anymore cause I don’t have much time for them. If I do get a rare time to do something no one wants to do anything cause I can’t always do things when they want to. So I just don’t ask anymore.
That has to be so hard. I would encourage you to try and find a loving, understanding community that works for you. It can be so rewarding. Thanks for sharing.
Hi Jayne,
I’m so sorry you are having to go through some difficult times caring for your husband, who had a TBI! I am a recently retired nurse and was a caregiver for my late son, who was medically fragile – non ambulatory, feeding tube, etc. We loved him dearly! I became a nurse after he was born because it would allow me to work variable working hours, Found a great evening program for nursing. We nurses always say “nursing is nursing” no matter the setting, and I say caregiving is caregiving, no matter the diagnosis or lifespan! If you are able, I hope you will look for respite; family, friends or formal support during this journey. I worked as a home care nurse for the last seven years of my career, helping people just like you find help for their loved ones! I don’t know what state you live in, but there are federal, state and private grants providing programs which support TBI I wish you the best and I hope you have already or will find assistance so you can carve out some time for yourself! Bless your heart.
Thank you so much for these caring words. I love seeing people uplifting and encouraging others here, while also providing resources. Thank you!
My wife died of cancer 7 years ago. I have been raising our two children….one with severe Autism. This article also describes my life. The latest chapter is self harming behaviour…….so far the biggest challenge
I’m so sorry for your loss. I can’t imagine doing what you are doing alone. I really hope you have the help to deal with the self harm. I’m sure that is so hard and scary. I am hoping you can find the support needed. Blessings on what lies ahead.
Yes. I care for my mother w advanced Altzheimers. Ditto.
Such a sacrificial love. Thanks for caring for her. 🙂
I know what yhus mother is going through and how she feels. I am raising my 4yr old grandson and he has Autism. We go through the meltdiwns and dont know how to disapline him. My daughter is pregnant agin and she worries if this one might have it too. However back to my grandson. He kicks, hits and bites when he gets upset or doesnt u derstand. He tells her she is a bad momma. We go to many appointments and therapies. There is no Manuel for our special people. Just love, tolerances and determination.
Thank you for loving and raising your grandson. Others are commenting on not having that kind of family support, so I imagine it means the world to your daughter. Keep seeking solutions, and I believe you will experience growth. I’ve seen it. Thanks for commenting.
Thank you for putting in to words exactly how I feel every day. It’s comforting to know I’m not alone.
You are not alone. I’m so glad you were comforted by these words.
I am so very sorry.
So spot on. Our son has FASD and every bit of this rings true.
Thank you for sharing so that others can know they are not alone. Blessings on your journey.
Please look into Nemechek Protocol for both brain injury and autism related disorder.
Thanks for that resource. I love when people can help share what they have seen work! I appreciate it.
VG-
I was reading this article and I saw your comment. I am now looking into this for my son who has been diagnosed with severe autism and cognitive delays. Thank you for sharing this. I cannot wait to try it! I’m so hopeful with this new information.
I love this support community in the comment threads. What a beautiful thing!
Incredibly accurate. Both of my children have ASD. My son, almost 10 and my non verbal daughter 8. I’m raising them on my own. They’re both getting taller, faster, stronger and more opinionated about what they will and won’t do. They run into traffic, bang their head through walls, constant Stimmimg, meltdowns, toilet training issues galore. My daughter will be going to a clinic in Maryland that believes they can help her. I have to leave her with them for 6 months. After seeing dozens of experts, different meds, therapies and “essential oils”, I have to break my own heart and let her go. After all, this isn’t about me, but I have to save her life as well as imorove the quality of my son’s and eventually my own.
Most people don’t get it. Their father doesn’t really get it. So it’s amazing that even with all of the Internet’s flaws, we have gems of understanding, as shown in this article and the replies. Keep fighting the fine fight. We are Super Heroes.
So sad and such a hard decision to make. It’s important to recognize when we need more professional help that might help save a child’s life or well being. Keep loving on them! 🙂 Thanks for commenting.
I read your article with a huge lump in my throat. It’s a long and lonely road. Family members cannot comprehend the complexities and situations of raising a special needs child. I get all sorts of negative unsolicited ignorant information, including comments as: it’s the medicine you are giving her that is causing her to be that way. If you stop she won’t be like a zombie. For me, certain comments create triggers to which I decide not to conversate with them regarding any special needs topics pertaining to my daughter….hence the lonely road. I really enjoyed your article.
That’s hard. it would be so great if people spent more time seeking to understand by asking really good questions. Thanks for that reminder to be gentle in conversation with situations that are really hard.
I cannot even tell you how the tears flowed as I read this. I, too, have had so many of those feelings you described. I had 3 older children before our “surprise.” When you spoke about the looks from others, it reminded me of time when my son didn’t want to go into his karate class. One moms (or grandmother) had a look on her face that led me to think she was wondering what was wrong with my son. I was so angry at her.
I, too, have been exhausting all options. Initially diagnosed ADHD; medications initially worked. However, there seem to be other issues (I.e. anxiety). Currently looking into genetic testing for medications, as well as a psychiatric evaluation to insure his diagnosis is accurate.
I pray every day for things to be “normal” again.
I pray that for you too. Hoping you find solutions. It’s important to allow those tears to flow, and yet my hope is that it is followed by continued grace, determination and peace for you.
When strangers are disapproving because they don’t understand, I find it cathartic to go up to them and tell them that my child is acting that way because she’s special needs does not react like a typically-developing child. Usually, this embarrasses people and they don’t know what to say. It gives me great satisfaction to make them feel this way! And no, I don’t feel guilty about it.
I think, when done with some grace, creating understanding through conversation is a great idea. I’m trying to teach this to my own kids as they talk about other kids they see struggling with self-control.
Hi Meg,
I greatly encourage the psychiatric evaluation. It has helped us so much with our son in figuring out medications and therapies to use. There are a slew of letters when talking about things that he deals with daily. ADHD was his primary diagnosis, but over the last several years things have been added on. Praying for wisdom, and peace that only He can give.
Thank you for sharing your words of encouragement and advice. I agree that getting the help of professionals to choose the right direction is really beneficial.
Yes mam! Good luck to you good momma bear!
Thanks for the encouragement. 🙂
Stephanie that is such a hard situation to be in. I feel for you greatly and wonder if you have tried looking at the medical causes for your children’s symptoms? Many kids on the spectrum have GI issues and a Comprehensive Stool analysis, OATS, and IgG test can all hell determine some of those internal issues going on. With these three tests we were able to assist our child with his frustration and extra brain fog. While our son is non-speaking he is so much happier now that we have looked at natural and biomedical ways to hell him.
Thank you so much for sharing your experience and this advice. It’s been a great community of support here.
I forgot to mention a wonderful resource: http://www.tacanow.org
There is a huge support system there and on FB that provides hope for the changes others have seen with going the natural and biomedical route. Traditional doctors are not well educated on the needs of our autistic children, sometimes it takes us parents and finding further trained professionals to help (MAPS doctors).
Thanks so much for sharing that resource. I love that this is post is a catalyst for sharing stories and providing resources to others.
How heart-breaking .. and I am a 51-year old, Single mom of an amazing ASD 11 year old,who still sometimes gets so “lost” in play, or what we call her “acting out” (in a safe way, with a peice of Paper she envisions writing strories on but in her Head) that she sometimes doesn’t make it to the toilet i time. I weep for us all .. “What would our family look like if this child wasn’t there? [My parents can’t keep her for more than a night or two at a time)
How can I dislike my own flesh and blood? [because I feel so Isolated, and I have no Support system outside of Theatre ..]
There is guilt for these feelings. There is a desire to flee. You never would, but you fantasize because the day in and day out is exhausting. It has changed you. It has changed your family.” [But no one can even Start to take care of girl if I weren’t around …]
I’m sorry for your struggle. Take time to week, but there is so much to celebrate as well as you grow as a mom, an individual and a human being learning to love well – despite the challenges.
My heart goes out to you. I know it has to be one of the hardest decisions of your life. My son has been diagnosed with severe autism and cognitive delays. I can’t imagine having to make that decision. I know what you mean when you say they are getting bigger and stronger than you. Sending you love from me and mine to you and yours ❤️
Thanks so much for your encouraging words to Stephanie!
Stephanie – please tell me more about this clinic in Maryland. I am desperate for help.
I hope she responds. I love that you all are helping one another out!
Kate, My daughter also has FASD! you caught my eye because you honestly don’t see this diagnosis much. But I wanted to throw my email out to you in case you wanted to connect . I know I find comfort and encouragement when I can talk to somebody who can relate, who understands like this amazing article expressed. My email is jada@ryanblackfilms.com God Bless!!
Thanks so much for being a friend and a resource to someone. I love the community that can be create be a simple gesture like this. 🙂
The guilt! So many expressions in public telling me that I should be ashamed. I am. Not of the disruption my son is causing. I am ashamed that I would do anything to change him. I am ashamed that I would hurt anyone of them; if I thought that would make him normal.
I’m sorry. I don’t understand the “hurt anyone” part, so want to make sure this isn’t really an option. Your pain is real, and I just hope you can rise out of the shame and into freedom.
We adopted fasd twins
I have never been so lonely. I am starting to hate people who feel they need to protect their kids from mine. It’s like fasd is the flu anyone can catch. It’s so lonely. I hate weekends and summers, we are in survival mode. I would do anything for a playdate. My twins are now 6 years old.
Bless you for being willing to adopt those that others would reject. Thank you for that kind of love. I’m so sorry you feel lonely. Wondering if there is any kind of support network in your area. I know someone in our city just reached out on our FB community city page just to see if there were other moms with special needs so that she could have someone she could relate to. I wonder if there is an opportunity like that for you.
This completely and totally resonated with me as a mom of a child with ADHD-C and ODD, both often at the extreme end of the spectrum. The exhaustion, the stress, the frustration – nothing even comes close to comparing. I appreciate this mother for putting it into words, it’s the only way we can continue to reduce the stigma around the struggle parents feel raising a child with an “invisible” disability.
Yes – There can be a stigma with these more “invisible” disabilities. Others can’t see the daily struggles, doctor/counselor appointments, parenting books read, methods tried. It’s so important for us to share and be real about our lives because people need to realize they are not alone. Others also need to develop an understanding and compassion for what others in this life are going through so that we can all show more support and kindness to one another. When you start talking, you realize how many are out there struggling with the same kinds of things.
What a great article and so well written. These things one would only know when faced with the life that many of us have. I shared it on my Business Page. Thank you! More please, in all the spare time that you do not have, that is!!
Yes – in all my spare time. 😉 Thank you so, so much for sharing. My goal is to create more understanding, compassion and help people not to feel alone. Thank you.
This brings me right back to the day when after hours of tantrumming it took 100% of my will power not to yell at my son, as we waited in a restaurant lobby for our to go order. I wasn’t yelling, but I was threatening everything I could think of, loss of electronics time, taking him outside for a spanking, completely hollow threats, indicative of how at the end of my rope I was. I even moved my hands in extreme frustration clenching them towards my son at the same time I was desperately pleading with him to just stop screaming and writhing on the bench and floor as if he were being tortured. It was at this time that a woman across the seating area loudly said “I need you to stop” I was confused, I thought she was talking to my son. But she was talking to me, she went on to loudly tell me how abusive I am, I was struck dumb, I had no words, clearly she couldn’t mean me, I love and adore my son and have sacrificed everything for him…. then she told the restaurant staff, who knew us well as regular customers, that if I even looked like I was going to hit my son they should call the police. This is the single most heartbreaking moment I’ve had as a parent and this includes my son being born at 27 weeks, his classification as emotionally disabled in kindergarten, his needing to repeat K because they stopped educating him in the ED class, then his severe ADD diagnoses followed by his autism diagnosis, and even his expulsion from private school this year. None of these compared to the harsh judgement of this stranger who saw, and probably still sees me as a horrible abusive mother. The only solace I have is that she obviously has never had to deal with a special needs child who has been literally throwing a tantrum for hours, and God Bless her for being so fortunate!
Your story is such a reminder of the importance of kindness. There can’t be enough of it in the world. We never know what someone else is going through or has been through. Thank you for sharing this important story.
My heart went out to you reading this. My daughter is 38 now. She has autism with learning difficulties. She had a mental breakdown a year ago. I must say it has been the worse year of my life. The attitude of my husband and eldest daughter has hurt me most. She needs to pull herself together is their attitude. Without my middle one Naomi and Eleanor her daughter I think I’d have gone mad. I can’t tell you how much better I feel getting this off my chest knowing the people reading it will understand. God bless you all x
I’m so sorry it’s been such a hard journey. I’m hoping for healing for your family. I’m glad you found some solace in hearing about other people’s similar journeys.
This was so well written and explains our journey perfectly. Thank you!!
Thank you so much. I appreciate it.
Thank you for writing such a. Honest and inciteful account of how it really goes. I am a PT caregiver restpite worker for several families with special needs children.Your article helps me remember why I do what I can despite the low wage.The families I work with are the most resilant and some of the most creative people I am honored to know. Thank you for helping others to share.
Thank you for what you do to sacrificially serve and love these families. I am so glad you see the beauty in both the families and the individuals. That is such a gift!
I have known and loved a mother of a special needs child for just over two years now. She is so strong, so loving, so patient, generous and giving. She is SO kind to a world that is not. She and her two children have overcome so much. I swear she is a saint. Sadly, as of recent, I feel as if I am not patient, loving, understanding or strong enough to be the man that supports her and her amazing child.
I love him, I fear him. I am just scared of his outcome despite not wanting to be. I wish I knew how to be a fraction of what she is. I have learned from her that a mother’s love, being a strong woman, waking everyday to the unknown with a focus on hope and not accepting defeat takes more than I could ever imagine to put forth in this life. She is so amazing, I imagine all mothers of special needs children to be equally amazing. I pray that each of you have someone strong and patient in your lives to help ease or improve or just to simply share in what you may experience living day by day with these amazing, challenging, frustrating, funny, differently gifted and loveable children! You all must be the greatest people on earth and we could all take life lessons from you. God bless!
Oh man, Kenneth. I can hear your hearts cry here. A deep love for the persons and situation and yet a deep fear and hesitation of what life looks like if this is your choice. I see how much you admire her own strength and love. She sounds like an amazing woman. Thank you for encouraging others who have similar situations that are so challenging and yet provide for the beauty and love of humanity to show. We can learn so much from people who do this well. It inspires us to be better, do better and love better. I’m sorry you are faced with these challenges, and I pray for wisdom for you as you navigate the situation.
Just wow. Thank you for taking the words out of my mouth and letting me know that I am not alone
You are not alone and sometimes discovering that can bring much peace. I’m sorry for your struggle, and I really hope you find hope, growth and determination in the midst of the hard. You’ve got this!
I am now 60 years old. My husband died 2 years ago, so I have that loss to deal with without letting my special needs daughter see me mourning. She is afraid I will pass away next. She has nightmares about it. It’s hard to explain things to her. My daughter is 40 years old. But she’s not 40 years old. I see people watching me at stores or other places talking to my daughter like she is a child. I see puzzlement, disgust, amusement, and then some people just stare. It is not easy. But I worry about her living in an institution when I’m gone. That makes me the saddest of all. That keeps me up at night. Any suggestions?verna
I love your heart for your daughter. You are 60, which is still young, so hopefully you have many more years to love and care for her. I don’t know that I have the advice you need. I would just encourage you to keep teaching her the skills that might benefit her. I’d also say that if you found the right environment, and institution could be great for her. She could have professionals to care for her, activities provided and a community of friends that she would live in. Perhaps beginning to look into different options would put you both at ease. Take care of your health, so you continue to have lot of years ahead to enjoy.
Verna: In answer to your question about what happens once you’ve passed away- please talk to an estate planning lawyer about creating a “special needs trust” for her. This will ensure her inheritance goes into a trust fund that you can choose who will manage. There are companies that specialize in this for adults with disabilities. Lawyers should have good referrals for these companies and you can visit them and research them now. It sounds like you are her legal guardian so you’ll want to appoint someone to be her guardian when you pass away (you can choose the company to be a guardian). If you don’t make a plan now, she will likely end up having the court appoint her a guardian and possibly caregiver. Her care will likely be better and your peace of mind will surely be settled if you are able to set these things up now. Best of luck to you.
Thanks for this great advice!!
I know your fear. My first child was sp. We had 2 daughters after him. Tommy lived to be 10 years old, but we had a will drawn up making him a ward of the state because in the ’80s we couldn’t get SSI for him. And Jodi, your story touched m heart. Nobody understands, and you wouldn’t wish it on your worst enemy. The only thing worse than living with a special needs child is living without that child when he dies. Because then you go through all that grief again. But, mostly, the relief you feel that your child is no longer your 24-hr worry, no more hospitals, no more specialists. You get to live a more “normal” life with your healthy children, and then your husband turns into an abusive alcoholic absentee father and you get divorced! Any questions?
Oh wow. That sounds so hard. I’m sorry for your losses. Hoping you find restoration and peace that overcomes the circumstances.
Hi,
My aunt is in a similar situation, my cousin is almost 46 and my aunt is in her 60s. She got friends with similar kids to gather and they bought a house together each kid has their own bedroom and they employ someone to cook and clean and help them. During the day, they go together to work, they get jobs like packaging hair clips and stuff, and they also sell art work that they do etc.
Maybe there is something similar where you live that you can look into for your daughter? What started as an idea among friends about 20 years ago is now a successful foundation that looks after about 20 people, and my aunt is now sure that my cousin will be happy even after she can no longer look after her.
I absolutely love this idea. Thank you for sharing this inspiration. What a great way to honor and empower these individuals while also building community with purpose. I’m in love with it!
I had a special needs brother and was his guardian when my parents couldn’t be. He was served by a community-based organization with a case manager, HUD housing, days services, etc. which provided all his care. The people who worked with him loved him. He had significant behavior issues and we all worked together to try to find solutions that were manageable. There were people who were not family who served as guardians for some of the other persons served by that organization. In our state there are state funded organizations for every county which serve as a gateway to services available. Find out whether you can at least get a case manager or life coach who can help share the burden and help you find other services to help. My brother lived to 65 with Down Syndrome and autism and needed care every hour of his life. Their were a lot people who helped us provide that care! Good luck!
Great words of advice and encouragement. There are so many with that gift of compassion and love for those who struggle the most. I love hearing these stories of great care for others. Thank you.
Now that I am a widow my special needs son is forty and a blessing to me! I had no idea when he was growing up what a joy he would be! He still has his “special needs” but the person he has helped me to be was well worth the struggle!
I love this testimony. Special needs children are gifted in so many ways, and I love to hear what a blessing your son has been. It’s often easy to focus on the frustrations rather than some of the amazing abilities and personalities these kids can bring. Thank you for that reminder.
I raised two children after my husband died, my daughter and my son. My son had Aspergers I researched , went to any course I could to find out how to help him and sent him to appropriate schools, it was hard going. My daughter couldn’t handle his rage, attitude,tantrums and verbal abuse she left home and had very little contact with me. I eventually broke down after 30 years of trying to help my son, he had become someone who couldn’t stay in a job for longer than 6 months, he blamed everyone else for his relationships breaking down, no real friends , and the verbal abuse towards me because it was safe and I didn’t retaliate became overwhelming. I love my son dearly, but I don’t love the man he has become. I can do no more , the decision has to be his to get the help he needs . I need to feel safe and live my life , this is not selfish it is a reality. It has been hard work , I have put my son before me always, because I am his mother, when he is in a good place he is the best son in the world , loving,helpful, and a joy to be around. Do what ou can to help your children if they have a disability, encourage them and above all love them unconditionally, but give yourself permission to encourage , love and put yourself first. Without your support and love they have no one. My son will be back in my life , I know he loves me and I love him , but we both need space, to work things out and for him to realise he is not alone with his disability he has support all around him.
What a real and hard story. I thank you for sharing from your heart and being authentic. I value that. Other moms are struggling in the exact same way – investing, investing, investing – and needing to make some really tough choices. I appreciate your willingness to take the time to respond.
Wow, your comment is very touching! I’m the mom of 3, and my oldest child sounds a bit like your son. He’s 17. It’s exhausting and heartbreaking; the pain of not only dealing with his behavior, but also the continual grieving over all the losses that become apparent as time goes on… While his disabilities and behavior have brought great difficulties to my family—also the sacrifices, trying to hold him accountable while being compassionate at the same time—my husband and I love him unconditionally. The social isolation is hard. It hurts to see the very clear and obvious rejection from peers and their parents, and it hurts even more to feel the rejection of my brother and his wife and their children, his cousins! My brother mentioned to me once, “you can’t sacrifice the whole family for one person.” They just don’t get it! I’ve essentially written them off as any part of our support system or loving family; this breaks my heart but as a loving mother I will put unconditional love for my child above my relationship with relatives. I will not subject my children to their aunt’s, uncle’s and cousins’ rejection and dislike of him, and the comments they’ve said about him. My brother and his wife have (thankfully—for the sake of their children) never been in the situation I’m in with my special needs son, so they can’t understand it…an emotionally healthy parent will always love their child. My husband and I have limits and boundaries to protect our other kids and ourselves from the emotional pain and abuse my son can cause us (heck, currently my husband and I are living in 2 separate homes, to keep our other 2 kids safe from verbal and emotional abuse my son would otherwise subject them to!) but we will NEVER stop loving him unconditionally.
My mother (who’s always been an excellent support) has also told me recently that she and my dad don’t know how we can still love him. I can’t wrap my head around the idea of a parent NOT loving their child unconditionally—even if protective boundaries need to be in place. I feel so incredibly HURT by these reactions and comments friom my parents and my brother’s family, and that makes this parenting situation just that much harder.
Wow. Thank you for encouraging Ruth but also sharing your story. What sacrifices you have made in your unconditional love. I’m so sorry you haven’t had the family support. That has to be hurtful. Thank you for choosing to love. What a great testimony.
And you don’t understand what it’s like to live as someone who has special needs. I guarantee you that my life, your child’s life, and every other neurodivergent person’s life is a hell of a lot harder.
That’s so, so true. To try and walk in the child’s (or adults’) shoes, realizing that this is something that is often genetic or imposed on them gives a sensitivity and understanding that is much needed in this world. We can get so annoyed rather than compassionate. Thank you for bringing that perspective.
Bless you.as I was reading the post I just kept thinking how about the child in amongst that turmoil I can only imaging the pain time efforts and everything that goes with it but at the same time it wrenches on my heart to think what must that child that adult with these disabilities must be going through.i wish you strength and live.god bless you.xmy grandson has asd.
Thanks so much for your words of encouragement. Empathy is one of the stronger skills we can develop in this life. I love seeing your heart for all involved.
I agree with you, and I’m so sorry for the difficulties, struggles, and pain you and all other neurodivergent people live with. That is a HUGE part of the compassionate I feel and the HEARTBREAK I feel for my son and all others who have special needs. I think knowing how much those with special needs struggle and hurt is probably the biggest source of my pain as the mother of my child. I know my difficulties, but can only imagine the difficulties those with such challenging special needs endure. It breaks my heart.
That being said, I also struggle with my own disability—I’ve got severe ADHD-Inattentive type, along with chronic depression and complex-PTSD acquired from emotional and psychological abuse from my ex-husband. I often feel like I’m in an impossible situation, ill-equipped to parent my child with his special needs. I praise the Lord for giving me what I need to somehow be able to do it.
I’m so sorry it has taken me so long to get to your comment and approve it. I love how my readers are interacting. I got behind on comments, and I struggled to keep up, but I do value them so definitely wanted to get to it. Thank you for being an encourager and a relater. I’m so for both your personal struggles as well as the challenges that come with raising a special needs child. God does provide what we need when we choose to rely on Him, so I’m so glad you are relying on His strength for what you need.
Let me say right from the start that I am not raising or helping in any way to raise a child with special needs, in fact I am not even a parent and never have been. However, life sometimes ensures that we are placed in situations where we either choose or are forced to interact with people that are struggling with the life events that your article describes. While the article(s) appear to me to help support those who are raising a child with special needs it provides little or no advice to lay people such as myself on how we can contribute or help support these parents. I can give generously at chook raffles just like everyone else but it doesn’t make me feel as if I have really made a difference, no matter how small. I’m sure there are lots of people like myself that would benefit from advice about how we might contribute in some small way to the burden that some of these parents must go through every single day, any advice ?
Wow! I love your heart for this. Let me consider a follow up post. What I can say is that sometimes the well-meant advice someone gives when they haven’t experienced raising a really hard child can be hard to hear. Sometimes it is masked with judgement – or can even be perceived as judgment because of the vulnerable state of raising the challenging child – especially if the special need child isn’t visibly special needs. I would say that a listening ear, volunteering to babysit or bring a meal would be welcome. Each situation is distinct as there are so many special needs kids out there – ranging from autism to mood disorders to down syndrome to learning disabilities to extreme food allergies. Each situation is so unique that it’s always a valid question, “How can I best support you?” Sometimes a mom or dad might not even know, so to make some suggestions (providing relief, financial help, weeding the yard, bringing a meal, going out for an adult meal without kids) is encouraged. Thank you again for your sensitive heart for the parent that struggles here.
Great question! Although each situation is unique, I agree that asking the parent or caregiver what you can do to help is a great first step. Also, in many cases, when a special needs child is having a hard time, a distraction is what is most helpful. I have had a few instances where a stranger has walked up to us in the middle of one of my son’s meltdowns and just calmly started talking to him about something totally unrelated to the situation. That is usually enough to get him to “switch gears” and the meltdown stops! I wish more people understood this and would step in to provide that distraction, instead of avoiding us!
What a great, practical suggestion. I love that. I had a child melting down in Target once, and a older woman behind me said, “Mom, you are doing such a great job.” Made me want to cry. Thank you for your feedback, Julie!
Even just a smile helps if you see us struggling with our kids in public. If we’re struggling, little things like taking our shopping cart back helps. We don’t ask for much because we don’t expect it, but it’s nice when other people do little things like this to be helpful. Thank you for caring!
Yes! I love this advice too. Sometimes it’s the little things, right? Thank you!
Letting them know that you are there to run to the grocery store, help with laundry, keep an eye on the child while parent catches a nap is a huge thing. Little errands or activities that you take for granted can be hard for us
Great ideas here!
I am a grandmither trying to learn how to support daughter and grandson. Any advise is welcome!
I love that you are wanting to support both your daughter and grandson. Any help you can give to provide breaks for mom I imagine would be really helpful. Seeking to understand rather than fix I also imagine would be helpful. Thank you for your heart!
I do understand because if am the mom you are talking about here . These is to the point I am so glad you did these. No one understands what it is wen you telling them why you can’t go or do things the way everyone do. Thank you so much.
No one understands unless they experience the daily struggle. I hope it helped to hear you are not alone.
I have had two, this Thursday the 25th my Michael will be gone 6 years..his brother is not as handicapped as he was though i had both in wheelchairs until Daniel was 5…Michael was like a baby with his body, but his mind..oh and he suffered, surgeries, pain, seizures..so much of my family has been lost..the family I dreamed of after being raised by parents that drank..so much stress..money issues I could never work..my back is gone ..I stay home 7-10 days in a row without going anywhere..like I have told everyone..we never claimed to be Saints..they call us Saints…
I am so sorry for your grief and loss. My prayer is that you have found hope amidst all these trials. I am sure what you have to offer to others because of your experience is invaluable. Thank you for sharing your story!
I needed to see this so badly. I needed this so incredibly much.
I am so glad it touched you today. Hang in there! You got this!
I’m a single mother with a son who is nonverbal and has Autism. I went through his diagnosis with nobody and my family fighting me. They help now but yeah. And his father isn’t around.
Thanks for sharing this and to all the com mentors. It is so nice to read and not feel guilt for all the struggles and feelings wrapped up. Thank you for the reminder that even though it is hard for the caregivers it is even harder for the one struggling with the special needs.
We have a children with special needs lots of appointments and trials of every sort… and I have a mother who suffered a severe stroke in October that we help care for every 4-5 weeks in conjunction with my siblings and their families. It has pushed me farther then I ever thought possible but by God’s grace we continue to move forward.
So glad you are resting in God’s grace. That’s all just a lot. So hard. Keep trusting and persevering. All the best as you do more than you thought you could!
Thank you so much for this article. I sent the link to so many people because it sums up our lives. My ASD child is 27 now and the struggles are real but so is the love and the resilience. It is such a lonely life being a special needs family because there is so much that you can’t do due to sensory issues and other needs. It’s reassuring know that we are not the only ones feeling all these complicated feelings.
Thank you so much for your comment and for sharing. I think parents with special needs kids need to read the article to realize they aren’t alone, but I think it’s good to for those without these kinds of trials to read it too. We can create more empathy as we seek to understand what others are dealing with as they journey through this life. Thank you!
I totally understand how this person is feeling.
I have a daughter with special needs and for years, it has been a roller coaster ride.
I remember the times where I felt badly for her when her needs weren’t being met by the doctors, therapists, medications, hospital visits. She is now 43 years old and lives in a group home where she seems to be happy. She still struggles with lifeskills and friendships.
I love her with my whole heart.
Thank you for sharing your story. I’m glad you have found a place that is making her happy and filling her needs. I’m so happy that there are those environments available for those unable to live on their own.
You described this as if it were my life. My son who is on the spectrum, is now 20 and most people would never realize that he has autism. But the journey to get here was just as you described. Pain, guilt, joy, worry, and all the above. I never thought we would be where we are today. To hear you put it into words makes me feel comforted for having these feelings bottled up all these years. Thank you for writing this!
I am so thankful for your story because it provides hope for those moms who are in the daily grind right now. There can be so much growth and change. I know much comes through maturity. It also comes through hard work on everyone’s part. For some, depending the severity, it might be more of a lifelong battle. So happy to hear the hope in your story. Thank you.
Thanks for sharing this. I raised my daughter with CP, ODD, ADHD, OCD, AND Epilepsy. Most of my family didn’t get it, let alone the public. Then my daughter was diagnosed with stage 4 cancer and 5 months later was gone. I honestly miss the chaos that was my everyday life…
Oh my word. I am so sorry. I can’t imagine your grief. This is such a great reminder to remain thankful for what we have been given. I really am so sorry.
Though the content is true, the title is unnecessarily confrontational and alienating. If the writer’s goal in writing is to get people to understand, then you have to pique their interest and solicit their empathy, not insult them for not having a special needs child, which is something they likely have NO CONTROL OVER. Can’t we just stop with the assumptions and accusations of what other people do or do not understand, and leave our language to the facts of what our experience is like?
I mean good grief, I don’t want to even read the rest of the article now.
I’m sorry you were turned off by the title. I do hope you’ll take the time to read the rest. The hope is to create empathy and build bridges – not create walls. I’m sorry you feel it has done the latter.
As someone who supports families with chidren and adults who have disabilities, i am grateful for the title and content. At times, and with good intentions, I try to relate and empathize through my own experience as a mom… it feels like a natural technique towards empathy, but in reality it tends to create more barriers than bridges.
I read articles like this (and the comments) because to be an effective support, I occasionally need the blunt reminder that my perspective as a parent won’t ever be a full or helpful comparison. I support parents best when I listen and empathize solely through their unique experiences, challenges, and needs.
Thank you so much for the way you are choosing to love not only the ones with disabilities but their loved ones as well. You compassion, I imagine, is felt by all those with whom you work. Thank you for all you do and taking the time an energy to do it even better by developing that empathy. I really appreciate it.
My son has autism and this describe my life every single day being a mother in my early 20s it can be hard and sometime seeing my son struggles hurt my heart but as long I’m here I will walk by him and work with him . Yes it maybe hard to raise a child with special needs but we are they angles when we fill like giving up or anything like that just remember how they feel everyday. They wasn’t asked to be here.
Thank you for this important reminder. Kids who struggle with special needs do have so much to offer, and they didn’t ask for this either. It’s a reminder to try and remain full of love and patience. Some days it is easier to keep that mindset than others. Thank you for sharing your story.
Thank you so much. Every single day is a struggle. We have just started our 2nd year of NDIS. The NDIS workers don’t truly know your struggles. They come and see a child who holds it together for the hour the child is required, then they leave and don’t see the ensuing 24 hour meltdown that has come from the visit. Family don’t understand. You feel so alone and isolated. But my motto is this… Dory from Nemo……. “Just keep swimming, just keep swimming.
For those people out there who want to help, just actually do what you say you are going to do. So many people promise the world, (not what we actually want) and then don’t do anything because their regular life takes over.
For every single one of us with special needs, you are and we are all champions. Thank you.
Yes, there’s a lot that happens behind closed doors that many don’t understand. Dory nailed it, didn’t she?!
This article is spot on!! I would add that in this day of ever present phones (cameras), please do not record and then post meltdowns on social media. To venture out is one thing, hoping your child is not triggered. But if he is triggered, I don’t need you recording it and posting it as an example of poor parenting.
No one chooses this walk, but we walk it with hope, faith and love. And when we’re emotionally exhausted, we crawl….but we still move forward.
Yes. We still move forward. Thank you for that encouragement to not use cell phones and videos as a way to shame or harm. It’s important to be a part of a community that builds each other up.