“Can’t take much more of my child with special needs”…

 

http://www.stockfreeimages.com/

“Can’t take much more of my child with special needs”

Was a search term that showed up on my blog the other day.

When I read it, my heart hurt.

But I know that for a lot of parents, this is reality.

If I’m honest, when it comes to parenting my two young daughters with Down syndrome, similar thoughts have surfaced in my mind too.

Anne Lamott once said,

My mind is a bad neighborhood I try not to go into alone.”

I relate.

But when dealing with our children with special needs, or kids in general, I don’t think that we parents feel like we can really open up about our struggles. Good parents aren’t supposed to struggle. Parents of kids who have special needs are supposed to grow instant thick skin, have endurance, and be ready to fight to the end for our kids. We’re supposed to handle biting, slapping, outbursts, embarrassing situations, stares, rejection, with an easy, winning smile, and grace.

But we get tired. We get weary.

And when we are tired and weary, we need to be able to open up somewhere.

For that to happen, people need to show a whole lot more grace to one another.

Parents, if you haven’t been in the struggling parents’ shoes (or even if you have) don’t judge. Help. Encourage. Pray.

But don’t judge.

Special needs community, be sensitive to people who are struggling.

I’ve struggled. I will struggle. Caring day in and day out for my kids with special needs (and my other two as well) can be taxing.

If you found this post today because you googled “I can’t take much more of my child with special needs,” I want you to know that I hear you.

I validate how you are feeling. And I want to tell you it’s OK to struggle.

I want to also tell you to please get help.

I can’t take away your hurt today, or run over to your house to help watch your kids so you can take a break. I can’t fold your laundry, or throw something in the crock pot for dinner, or help in another tangible way.

But I am a person of faith. I can pray for you.

And I can encourage you to get help.

There’s absolutely no shame in asking for help. Ever.

Did you hear me.

There is absolutely no shame in asking for help. Ever.

I can say this, because it is what I’ve had to learn. This past year has been very difficult. I’ve spent days in bed depressed. My husband was stressed out. My kids were cranky. My children with special needs regressed.

I didn’t ask for help.

In a way, I didn’t know how.

But mostly, I didn’t want other people to know of my struggles.

I’m getting help now, and I want to encourage you today to get help too.

If you can’t take much more of your child with special needs …

Tell someone.

Parents need to be able to say it’s hard without backlash or judgment. You may not blog about it or post about it on Facebook if you aren’t comfortable, but please, please, PLEASE if you are struggling in a role of primary care provider for your child with special needs, tell someone about it. Pick a person who will hear you, validate you, and support you.

Something amazing happens when you vocalize harboring thoughts.

If you can’t take much more of your child with special needs …

Make an appointment to see your doctor

Rule out anything physical going on. Talk to your doctor about your thoughts and feelings. Heed his/her advice.

If you can’t take much more of your child with special needs …

Get a break. Today, if possible.

Know anyone who owe’s you a favor? Find someone to watch your kids for a day, an afternoon, an hour. Go outside. Get in the car and drive. Walk away, and try to do something just for you.

If you can’t take much more of your child with special needs …

See a therapist.

You may benefit from someone who is trained in helping you weed through your emotions and thoughts. If you can’t afford it, call your local church or google free/low-cost therapy options in your area.

If you can’t take much more of your child with special needs …

If you googled “I can’t take much more of my child with special needs,” I’m giving you an internet hug.

I’m sorry you are struggling.

Please, find some help. Email me, and I’ll try to help if I can…. I promise I will pray.

If you are a parent in the special needs community, leave a comment of support to those among us struggling today.

Did you like this? Share it:

Comments

“Can’t take much more of my child with special needs”… — 82 Comments

  1. I have so been there. So who ever this person is who did the google search…YOU ARE NOT ALONE. No one can say anything to me that I haven’t thought or felt myself at one time, and I will never judge someone for feelings they can’t help. I did try therapy, but it was expensive, and I needed more. I am still on anti-depressants, but I can cope with life, I can cope with my son who has special needs.

  2. Amen. It seems to me that we as mothers tend to always be looking around to see who is watching. I wish we could just support each other. This job is the hardest job we will ever do. I will pray as well, not just for the person who google this search but for all those who were too scared to even type the words. I will pray for strength, for patience, and for the return of joy!

  3. Wow – I’m glad someone did that search – because I feel like this even though my kids seem relatively ‘normal’ (not all of them – and to differing degrees!), I am always on the verge of falling apart. If mild special needs are such a challenge I can’t imagine the stress/burdens on those whose kids need many more interventions/helps than I deal with.

  4. Having a child with special needs is a daily journey. For some it is the journey of living one hour at a time. Mothers–you are human. You are vulnerable. You hurt with a pain the depth of which God only knows. Gillian offers wise advice. Take the time to take care of yourself. You are not alone. You are being prayed for…

  5. When my daughter was born, she would cry for 20 hours a day. And she wouldn’t take naps either. While I was still at home, my wife and I could break each other and escape for a while.

    When I went back to work, my wife was already under stress. The stress of being a new mother, and the stress of discovering that our child was born with Down syndrome. The difference is that I wasn’t there to give her a break during the day, and we couldn’t rely on what family we had within driving distance. I came home one day to find her lying on the couch, and our daughter crying away in the crib. She had reached the breaking point.

    I took some more time off to be there, but we needed to fix the problem before I went back to work. She still had 2 months of maternity/bonding leave, but I was using up what little vacation time I had.

    We got help from our medical provider, and worked to get my wife able to cope with the situation. Eventually I got her to stop obsessing about the diagnosis, and we found ways to shorten the crying. It wasn’t easy, but trust me, it does get better.

    Now we have a gorgeous little 4 year old who brings us incredible joy. There are still struggles, but in time we have learned to deal with them. Like Gillian said, FIND SOMEBODY! Family, friends, or someone at the store. You need to talk, and there will be someone who will listen. Who it turns out to be might even surprise you.

    • I am so grateful that you shared some of your story with us, Brett. And I am so glad that you were able to get help, and that your little one brings you so much joy.

      Really appreciate hearing your thoughts. Thank you.

  6. I have been there so many times since my son with Autism was born 10 years ago. Sometimes it feels like there is just NO WAY I will make it through his next meltdown, never mind the next 10 years. Years ago now I got help because I thought I was going crazy. I went through our phone book and called every mental health person in it until someone would see us. I was desperate. Now I take a daily anti-depressant and I go to counselling. My son gets therapy and has a counsellor who specializes in working with kids with Autism and she works with our whole family (siblings too). We have a support network around us. And yes, it is still hard. I found support online- there is a whole community of us out there. People who GET IT. There is so much freedom in just admitting that we aren’t perfect and that we can’t do it alone.

    Thanks for writing this Gillian. I love you my friend. xox

  7. Thank you for posting this, Gillian. I tend to fall into the category of Moms who doesn’t want the world to know just how hard life with two special needs kids (stimmers) can be. Some days/weeks/months suck! Some days I wake up and feel like I have an elephant on my chest just holding me in bed and making it hard to breathe. It took me a very long time to learn to ask for help. When we first starting working with behavioral therapists in our home I found myself having a hard time walking away and letting them do their job. I felt guilty for needing help and I felt ashamed that I might just need a break. I got over the guilt and shame. I now have no idea how I ever managed to get up and function everyday without extra hands and minds to help us through the day. So… If you can’t take much more of your child with special needs, DON’T FEEL GUILTY! DON’T BE ASHAMED! GET HELP! TAKE A BREAK! You will be a better parent and your child(ren) will benefit in the long run.

    • Thanks for sharing, Kaci.

      I loved this.

      “You will be a better parent and your child(ren) will benefit in the long run.”

      That’s what spurs me on to health. My children deserve better, and so do I.

      xo

  8. Pingback: can’t take much more of your child(ren) with special needs | Waving a White Flag

  9. My husband and I have walked the journey of parenting children with special needs for the past 12+ years. At one point, when I was beating up on myself, my husband quipped, “Anyone who claims they have it together all the time with this sort of stuff is lying!” Indeed! None of us are perfect, and we need each other. That’s the way God designed us. To that end, our organization is there to be a lifeline to struggling parents. Feel free to visit us at http://snappin.org/ to see what we might have to offer you.

  10. Excellent post and well written. I think we have all been there and some days I feel closer to a breaking point than others. Sometimes I feel like I have to put up this front that everything is wonderful and I have everything together because if I complain or seeming stressed, then it might appear to others that I do not love my little girl with Ds. Why I think that is beyond me, but it is a flawed thought pattern that I am working on. I hope that whoever googled sees this post and see these comments and knows that she/he is not alone. “There is no shame in asking for help.”

  11. I’ve had to seek help recently…because I am the only caretaker of my sweet son with a seizure disorder, speech issues, ADHD and learning disorders. My heart has been broken a million times in the last 6 years, watching him try and fail and give up and be rejected. I could hardly take the anticipation and fear of further diagnoses or developing worse symptoms, to the point where I spent every day in tears and worry. I’m trying new things now, and I’m NOT giving up. This little man is the apple of my eye, and if he can hack it, so can I…I just sometimes need someone to lean on, and that person isn’t always easy to find. People get sick of hearing my fears and sadness. People think I am not grateful (I AM!!). Sometimes, the best person to lean on is a trained person who wont roll their eyes and sigh, or tell you you are in over your head, or call your freinds and relatives to tell them you have finally “lost it” as soon as they get the chance, and also accept insurance and/or credit cards.

  12. Thank you so much. We have all been there. Sometimes I feel even more complicated in my feelings because I adopted a child with Down Syndrome; making me feel that it’s taboo to ask for help when I need it. I fear people will say, “you chose this child…you knew what you were doing.” But we all need help sometimes with our kids. They’re awesome but they’re exhausting. It’s refreshing to share these feelings openly with others and get a break when needed!

    • I too adopted children with special needs and felt that I could not complain because this is what we chose to do. I made my children tollerate dark times of survival mode when I could not manage more that the basics of life. I dragged myself out of this darkness by helping other parents with special needs children. I do tend to choose a difficult path. Now my husband need extra support and worries about the cost and the likelihood of no insurance coverage. I told him its an investment in health and there is no better investment.

  13. THANK YOU! I write this as my youngest some is crying because my oldest just bit him!! AGHHH! I have spoke with you before, my oldest son not only has down syndrome but also Moyamoya and My youngest also has Down syndrome. There are days when I wish I could just sit in my room and cry! It’s horrible. I often feel alone and like no one understands. We can’t go to play groups because my kids cant handle it, we cant go to the mall because my boys will cry if they are in their stroller to long and I cant let them walk…I spend all day every day in my house just trying to make it until 4pm when my husband gets home and allows me to have a break! I hate feeling this way, I want to enjoy my child as I know my time with them is nothing but a breath but most days it is soo difficult! I could use the prayers!!

    • I will pray for you.

      I find that I have to fight against allowing our lives to get very small. It’s so much easier to stay home and keep us sheltered than brave the world and all that it entails.

      I hope that you will get some time away, soon. I am praying right now.

  14. I love so many things about this post, but the one point that struck me as so very wise was your suggestion to rule out anything physical with a doctor. I thought I was going nuts after my daughter was born, but it turned out that I have a thyroid autoimmune disease and my thyroid had up and died on me… leaving me an exhausted, moody mess. I expected to be diagnosed with depression, but it turned out that a different sort of imbalance was at the root of it.

  15. What a wonderful post! Thank you for writing this. As a special needs mom of two (plus 2 more!!) I have those days that getting through the next hour seems impossible. It takes every single ounce of strength I can find in myself to get through the day. Reaching out and asking for help and giving yourself a break…both physically and emotionally is the most important thing you can do for your children. And praying gets me through the hard days. ((HUGS)) to everyone who has ever struggled. I gave up a long time ago trying to be the perfect mom. And I gave up trying to please those staring eyes at me in public. Thanks again for sharing! Hoping everyone finds someone they can lean on.

  16. This is one of the most difficult things I’ve ever learned – to ask for help. But when I finally did the relief was intense. The more I asked the better I felt and the better my kids and husband behaved. I forgave mysel if we ate breakfast for dinner, vacuumed dust bunnies as opposed to minute specs and made frequent calls to friends and family who had a sympathetic ear. It’s ok. I am much stronger and a better mom now.

  17. I can’t help but to wonder if the person who wrote this is the same one who left a comment on one of the Down syndrome boards on Facebook saying that she was considering giving her child up for adoption. The child was like 7, I think. I was happy to see people hadn’t jumped down her throat, but was sad to see that she had just stopped responding. I’m hoping she found peace again in her situation. I had a few years that were pretty frustrating with my daughter, Gabi. I think it was made worse by the fact that her father was no longer in the picture. If it weren’t for my parents who helped me a ton, I don’t know if I would have made it through. Now, she is much easier to care for. She still has her days, but the good far outweighs the bad. So thankful for my daughter. I’m hoping whoever searches this finds peace in knowing it won’t always be like this.

  18. Just yesterday I was Praying to God and pouring out my heart and asking for Just ONE person that I could talk to that would understand me and not think me to be the WORST mother on earth. And then this morning I find this!! How is that for Answered Prayer! Now I can know that if I’m sitting in the midst of a Dozen eggs on the kitchen floor crying because someone left the lock off the fridge I’m Normal!!

  19. Pingback: The Rosy Picture « The Garden of My Heart

  20. Wow, I usually feel this about the places that are supposed to help and actually often cause me to struggle more, for nothing most of the time. I do wish I had someone I could trust to watch my kids for a long weekend so that my husband and I could get way for a few days, but that struggle is more with family that is either unable or unwilling to help out.

  21. I too have struggled with the same feelings. And with lingering guilt and loneliness. I am a single mother for the past five years since my ex abandoned us (leaving us broke and nearly homeless) because he didn’t want a child with Down Syndrome. He used the R word, but that’s another post in itself. Just when I finally managed to get myself to a place of peace and acceptance, my son suddenly stopped talking and lost nearly every skill he’d ever learned and was diagnosed with Autism. There are some really tough days and some really joyous ones and everything else in between. There’s no one but me to deal with all of this. No friends or family willing to help out or to even learn about my son.

  22. I was so horribly judged by someone I thought was a friend when I complained about my child with special needs (who also happened to be a teenager!!) that she called our social worker and blocked our next adoption. As a result of that horrible trauma, I find it very hard to be open about my struggles with my other child with special needs (though his needs aren’t anything like the teen’s). This world is so open now with the way technology is that we have to be super careful, but then we miss the support that we also need. Hard to know what to do sometimes… So I confide over the phone with my mom or best friend – I know I can trust THEM. Still trying to get over what that awful woman did… Sometimes, it just doesn’t pay to be open about things.

  23. Thank you for such an honest post. I feel guilty when I feel like I need a break from my special needs child. When I feel like I just want some help and for something to be easy for once. But then again, I sometimes feel the same way about my other kids- different reasons, of course, but a similar feeling. Yet, I don’t feel as guilty when it’s about them instead. And I’m trying to realize that all parents have their breaking point, all might sometimes feel like it’s too much- special needs or not.

  24. When I first had my daughter, I sank into such a deep depression I could hardly function. Post partum along with just being absolutely terrified that my baby had down syndrome. I spent many years grieving. Lost friends, caused family turmoil and nearly ruined my marriage. It was really hard because I felt so judged and that no one wanted me talk about my fears or worries. And I desperately needed to voice my fears. Emma is 5 now. She is beautiful and strong. She had her heart repaired last summer. My heart is being repaired every day. I have really hard days. Where I just feel like I can’t take it. And I have good days. The important thing is that I have finally realized that it’s okay to have the bad days. It’s okay for me to say that I have bad days. Those who judge that, well, who cares! They are not living my life. I am. When you find the ability to not be afraid to say you can’t take it, you truly have found your strength. Prayers for each and every one of you.

  25. Great advice and I love the way you creatively played with fonts & sizes for effect. Praying for everyone to be more supportive and accepting freeing themselves of the burden of teaching moments in times of crisis (don’t remind the grieving mom that balloons are not good for the environment). Discuss hardships & benefits of good bad & tough situations & statistics.

    I ADVISE people to listen to music, go to nature and get that hour away—maybe to watch unproductive tv whatever. I cannot usually coach or coax myself on a tough day.

    It is the ability of supportive & patient & understanding friends, family & connections (online counts too!!!!!) to help us, catch us and carry us in faith–peace, love & understanding to quote Elvis Costello.

    Praying for support especially for parents in tough times & ready to toss in the towel like the 7 year old mentioned here in the comments (and the family who sued over their Ds diagnosis is coming to mind!!) cause some DO with dire results.

  26. Just blogged with Shannon on her brokenness blog and just too tired to type it again. Your blog today is just right where I am. We have a 20 year old son that is developmentally delayed, non-verbal, autistic, and has 20-40 seizures a month. We are going on our fourth year without respite. Thanks for your prayers and Thanks for sharing. God bless.

  27. Pingback: For parents who aren't ready to celebrate Down syndrome - | Gillian Marchenko

  28. Pingback: The waiting room, what one special needs mom still has to learn | Gillian Marchenko

  29. I am the mother of beautiful twin girls with Angelman Syndrome. My girls are 6 years old now, but when they were younger, I struggled with why my girls have problems and I did everything during my pregnancy possible to make sure they were healthy. I was very angry with God, and envious of anyone with a child the same age or younger who were meeting the developmental milestones. I prayed alot, and sometimes I had to force myself to pray and read the Bible, but that is where I found answers and peace. I have also had to learn to just say, I have to have a break, and allow myself to be me, and not just mommy. Sometimes it can be as simple as having my husband feed the girls supper and give them meds and put them to bed. Just the break from the routine can help out tremendously, but if I don’t ask for his help, he doesn’t realize that I am needing a break, and then I end up getting angry. So, like my mom told me, just ask, it is easier on everyone in the long run, because nobody has to get angry.

  30. I am the mom of a 22 year old girl with Autism, MR and seizures and I can tell you that it has not been easy and I can tell you that it is my faith in God that has gotten me through each and every day. Each day comes with it’s own struggles and today is no different so I pray for all of you and ask that you please pray for us as we continue to face our daily struggles. Thank you!

  31. I don’t even want to say the phrase I just Googled it is that hurtfu, but it was very similar and I am very glad to have searches it as it led me to you.

    The thing is, I have help. My husband just got home and banished me upstairs because I was so frustrated with my 3.10yr old Special Needs son who is in school from 8:40-2:40 M-F. You’d think I would be able to handle the 3 hours I have every afternoon with him, but sometimes I just get so frustrated. I can’t exactly get help in the middle of it, you know?

    Anyway, thanks for the support. It saved this mama on this afternoon.

  32. Please don’t think that I am seeking sympathy… My wife and I have a 25 year old special needs son. He was born with a chromosome abnormality that to date is the only one with this. It is a translocation of a number 7 to a number 1. We were encouraged to abort due to the test and finding this out prior to birth. Nick is as normal looking as can be, he is non verbal, requires pretty much everything when it comes to his needs, can’t be toilet trained, must be fed and the list goes on. Eleven years ago I “his father” had to give up my construction business due to Nick becoming to big for my wife to handle, so she went to work and I became a full time care giver to Nick. My wife has sever pain in her side as of about five years ago that the doctors can not seem to diagnose, so like many she was put on pain medication which makes her very tired and I don’t see her in the evenings or much on weekends. I have other children and for quite sometime they were very helpful with caring for Nick. Then as of the past year it seems like they have all abandoned wanting to take Nick much. I am 62 years of age and I can not bring myself to place Nick in a home especially since he is non verbal, not to mention the cost of all places that I have checked out. I don’t talk to anyone, I am at home pretty much 24/7 here with Nick, very few come to visit even family. I know that I am beginning to see through my “thick skin”. I find myself just pacing the floors in the mornings when Nick is sleeping, I find myself with tears and as we all know, big boys don’t cry. I feel like not only do I have this responsibility to Nick but the hardest part is feeling like I no longer have a wife, which I don’t blame her for working plus being so tired from the medication. I try to be strong and continue to think things will get better, but at my age I now feel so much like this is the way it is going to be until I pass on. I guess Nick is what keeps me going, he is my friend, my strength and I talk to him as if he understood what I was saying just to keep my sanity and it seems to help him. In certain ways I feel that I communicate with him even though there is so much he doesn’t understand and being non verbal has been the greatest challenge for when he is sick not knowing what is wrong. I have had so many thoughts of suicide lately, mainly because I don’t want to see what is going to happen to Nick, its not that I feel it is a easy way out for me with this “all alone” feeling that I have. If there are others that are in or even close to the situation that I find myself in, I praise you 100% ! I know it isn’t easy for mothers to do what has been placed on my plate but as a man / father we just don’t have that “Mother Magic” and I don’t know what is going to happen to me. Thank you for your time allowing me to vent.

    • Hi Scott,
      Thank you so much for taking the time to share some of your situation here with us. My kids are still little, and I can imagine the toll it takes on a parent when you are the primary caregiver day in day out. I want you to know you are not alone. I also would like to encourage you to talk to your wife about your struggles, and maybe see if you can see a counselor or get help in some other way. Nobody can do this alone. Also, there is a great site for parents of kids with special needs called http://not-alone.org/. I encourage you to check it out. There are a few fathers who write posts there, and they are great. Prayers. Please, keep coming back and talking to us. We care.

      • Thank you so much Gillian! I was truly blessed finding your website, I just googled struggling father with special needs son and found your link. I felt so much better just getting something written down that others were going to read. My wife and I do talk a lot and she does try so very hard. I try to be the best husband and father that I can be but I do need to not be afraid to ask her on evenings that I am totally drained to care for Nick while I lay down for a couple of hours. I am going to check out the site you mentioned right now. At this time I need all of the support that I can get and I am willing to support others in anyway that I can. This is such a wonderful place to come to read about the struggles of others and to vent. Thank you so much for having this available to more of us then most realize.
        Scott Sichley

        • Scott, as a fellow dad I can relate to a lot of what you’ve shared. My boys are 16-years old, on the severe end of the autism spectrum, my wife has fibromyalgia/degernative disc disease (she’s not getting around too well).
          The hardest thing for me to think about…in fact I try to avoid thinking about it at all…is the day that’s coming when my sons will have to be placed into a residential-care setting. There’s days where I’ve thought it might just be better if my boys passed away before I did…I would probably be much more at peace with the future.
          On the other side of the balancing scale is my love and trust in God and His promises. He loves me. He loves my boys. He has not abandoned us. This journey of faith and special needs is NOT an easy one.
          If you’d ever like to touch bases…one dad to another…email me at michaelwoods@firstorlando.com I know it’s not the kind of thing that men usually do…kinda violates the “man code”…but there are times where you just have to talk to another human being who has a clue as to what you’re going thru. It’s a standing invitation.
          God bless you and thank you for all that you do as a dad…
          Mike

          • I love what just happened here. We all need to know that we’re not alone. I watch my own husband struggle with talking about how hard it is raising two children with autism. Thank you both for setting an example of what it means to be like Christ.

    • This road we travel is a rough one. We so need others to help us to navigate it. It affects us, our families, our friends, all our relationships, our social life, our personal life, our spiritual life, our thought life….we need others around us to support us…even venting! THANK YOU FOR VENTING!

      • Cindi,
        This is indeed a tough road and you are so correct in saying that we need others to help us navigate it. I was at one of those terrible places last night just prior to finding this website. My son was asleep, my wife was asleep and I was simply having a melt down. Now that I have found all of you wonderful folks you can count on some heavy venting from time to time from me. I MUST realize that I can’t do this alone! I think finding this site is one major first step for me to ease some of this pressure. God bless you all and I hope that I haven’t offended anyone buy using the word God… but I do believe in him myself, I must because he is the only one I have had to turn to for such a long time.

  33. This is not an easy road, and we certainly can’t think we can do it alone. THANKS for this community who can PRAY for each other, SUPPORT each other with encouragement to DO THE RIGHT THING, and to go the distance together. May we all finish well!

  34. I need help! I’ve done everything I could think of for my son, and am running out of options, I sometimes feel like walking away and throwing in the towel.

    • Betty, oh how my heart aches for you. That towel business has run through my head too. I pray you will be able to get help, and soon. Please keep coming back here and talking. And try to ask for help if there is anyone you can reach out to. Big love and prayers.

  35. Like so many of these commenters, I feel alone and unable to confide, at the risk of sounding hateful/ungrateful/crazy/unfit, all those things parents of “normal” children are so quick to use as labels. I find myself grasping at the end of my rope, so close to swinging, more often than I’d like to admit. I didn’t ask for this. I wanted the loving, happy family I was deprived of growing up. I feel that God has always punished me and I don’t understand. I don’t understand anything, except that I’m supposed to accept all this with fluidity, unconditional love, and grace. It kills me because I just can’t. I want to, I feel like I’m failing everyone, but I can’t figure it out. Therapy is unaffordable and has always proven useless (did I really just pay you to tell me it isn’t my fault? Because I already knew that…), drugs are also unaffordable and don’t work no matter which ones I try, and how can I turn to God when I’m so angry at what he’s done with me and my children? Maybe if I had family or friends that could relate, maybe if I had more money, maybe if I’d had a mother who didn’t beat the hell out of me ever since I can remember, maybe if I’d just had normal kids or not conceived at all… Maybe I’d be happier, a better person. But it’s too late for that now. It feels like it’s too late for anything to work. We all just keep getting older and more withdrawn, more depressed. At least we all have a keen understanding that there is no such thing as a positive return for nice deeds, honesty, or good intentions, and that the world is a judgemental, unhelpful place in which you may never be your true self. Reality and regret, oh how bitter you both taste, and how I am forced to eat every bite of every meal you serve…

  36. Yes indeed…my 20 yo daughter finally made it out of hs w multilple learning and emotional issues. Took her to college five days ago. Today a 30 yo man she met at the store where she worked picked her up at college for life w him and his two kids. I have been in bed all day. Do have caring listening friends but can’t deal w my guts wrenching over this vulture. She is an adult and all I can do is cut off all help for her. Heart is crushed. Her life may well be ruined.

  37. My husband and I adopted an 11 month old 2 years ago. For the first 8 months home, my hubby worked 12 hour night shifts (6pm-6am). My daughter was waking 5-6 times a night, I was sleeping on the floor next to the crib or holding her in a rocking chair. I never slept more than 2 hours at a time. My husband would come home and hold her and give her breakfast, then wake me up at 9:00, then I did all of her care until the next morning. My daughter is now doing beautifully, but my marriage has struggled, and it has taken a real toll on me. I find it difficult to get dressed every day, our house is a mess. I can’t find a way to even start to fix it, instead I just stay in the living room. My husband comes home to find me on the couch every day, I try to explain how tired I am, it’s not just a physical tired, I’m just spent. I can handle my daughter’s care, her games, crafts, meals baths, etc. I just can’t handle the house at all. My daughter is perfectly healthy, attached, and developed, yet I wonder, why am I still so tired? When does that get better?

    • Carrie, it sounds a lot like depression. Have you been in to see a doctor? You may need to go on a med for a while, or see a therapist. I do both. It is still hard, but I am getting better. Hugs to you.

  38. Thank you for everyone posts. I have a son (6 ) with Down Syndrome and a 2 ye old typical girl. My son hasn’t been diagnosed with anything eles yet but I’m sure he has ADHD or autism. He does a lot of stemming .the noise he makes drives me crazy sometimes. I cried reading some of this posts. It’s hard to get out of the house sometimes. My husband and I are divorcing . He can’t handle my son. He never takes him out ( daughter either). His parenting is to put on the Tv. I feel so alone. I also feel liked can’t share anything about my stress for being judged. I have no one to vent to. I haven’t been able to a good therapist. But really can’t afford it either. I wi soon be a single mom . Im afraid I won’t be able to keep it together for myself and the kids. I suffer from headaches everyday.

  39. Pingback: How to take care of yourself when your child has special needs. | The Formerly Hot Housewife

  40. Hi. I’ve worked in special ed for 10 years and if you think 1 kid is alot try 10 to 13 at once. My purpose in commenting is to out your kids. It’s true that some children are profoundly disabled and will only ever achieve learning basic life skills. However, some are very competent and play their parents like a fiddle. Never be afraid to discipline your kids because if they’re smart enough to manipulate you, they’re smart enough to learn what is and isn’t appropriate. It will be a knock down drag out battle at first but is worth it. Ask yourself, do I want them doing this in public when they’re 25? Once on the first day of school a little girl with Down’s decided she was going to lay on the floor instead of coming to recess with the rest of the class. We asked her once to get up. When she didn’t we left the class without her and not 10 seconds later she came running out. She never did it again. Now we weren’t really going to leave her unattended but she didn’t know that and that’s all that matters. People work hard to put their kids through college and you’ll have to work hard to put your kid through life. Learn all the techniques they use with your child at school and stay consistent.

  41. Another thought. Make sure to incorporate your child into family life. Give them responsibilities. Like putting the food on the belt when checking out at the supermarket or being the one who always carries in the bread and that’s important because it’s fragile cargo. They should know and understand their place in the family. I’ve. Noticed that families who incorporate their children have happier children who are more open to learning. If you help at home you know how to help at school and visa versa. Best of luck to all and get to know your children’s classmates and their families. That is your community and your child’s peer group.

  42. Hey everybody. I’m a 33 year old special needs mom of two kids: one with autism 5 years old and one with Potocki-Lupski syndrome 7 years old. Between my two kids diagnoses I’ve experienced a whole plethora developmental delays. I stay home with our kids and my whole life is dedicated to raising my children. My husband works, heads committees, runs his own golf league and career climbs while I deal with the kids. I feel so alone and desperate for a friend. I used to be a happy, social and viverent person until I became a special needs mom. My husband doesn’t understand how or why I’ve changed into a depressed person. I bear the burdens of dealing with our kids challenges so he can enjoy his life. Everyday I have to talk myself of the ledge. No one would ever know how deep my stuggles run as I am the queen of putting on a good face. I fantasize about killing myself everyday…but I won’t do it. No one can love or care for my kids as well as I do. It wouldn’t be fair to them to lose their Mommy. All in all, I could just really use a friend.

    • Thank you so much for reaching out here. You are not alone. And you sound like a great mom. Is there any way to let your husband know you need a little more help or some kind of outlet? It sounds like you are totally burned out. I’m so glad you shared. Please keep me posted on how you are doing…

  43. Hello all, I’m the sibling of a mentally challenged young adult. We lost our Mom 3 years ago and at the time I placed my brother into a group home. While there, he suffered from aspiration pneumonia on several occasions, the last causing him to loose part of his lung and me having to decide hospice. Then a miracle happened and He pulled out of it. After that I decided to bring him home as I was in a much better place in my life and career to care for him. I also had support now with my husband. All was going well and my husband was great with my brother until recently, my husband feels as if my brother is doing things to get on his nerves and when I try to explain that my brother can’t help these things he doesn’t believe me. Any advice on how to help my husband cope better? I don’t feel comfortable putting my brother back in a group home since where we live this one company controls most of the homes and did nothing before, even after my complaints of their care for my brother, but I feel that is something I’m going to have to consider if things keep going the way they are. I’m just tired of the stress and tension going on in my home and don’t know how to fix it.

    • Wow, Melinda, what a situation. You are such a wonderful sister to be there for your brother. I don’t know about ways to help you husband cope. Let me think on that… And hopefully others will chime in too. But just so you know, you are not alone.

Leave me a comment! I'd love to hear from you!