Special needs parents carry a lot of guilt. We have a lot on our plates and it can be very hard to juggle all of it and still feel like a human being. While guilt is certainly a part of life, we certainly shouldn’t let it run or ruin our life. Here are 9 solutions to some of the most common things special needs parents feel guilty about.
9 Solutions to Feeling Guilty as a Special Needs Parent
1. We Feel Guilty That we Aren’t Doing Enough.
For us, there’s always more we could be doing. More therapies, more research, more special diets, more cleaning, more doctors appointments, more everything. It seems like there just isn’t enough time in the day to do everything we just have to do and we feel guilty about that.
- Solution: If you feel this guilt, it just tells me that you are doing enough. Parents who feel guilty about not doing enough are usually the ones doing everything possible for their child and sacrificing everything to help them. Instead, write down everything you are doing to help your child. Look at it, read it, and try to see that you are doing enough. Hang your list somewhere you can see it every day and remind yourself that YOU are enough.
2. We Feel Guilty About Doing Too Much.
There are so many therapies and not enough time. Will it ever end? Should we take a break? It never ends! We feel guilty for not doing enough, but when we do enough, we feel guilty for doing too much. There’s PT, OT, ST, ABA, and more. How do we know when to stop and just let our kids be kids?
- Solution: If you feel this guilt, it’s okay. It’s easy to feel caught between the balance of too little and too much and it’s common to want to take a break from therapies and appointments. So do me a little favor… take that list you created above, and look to see what you could take a break from. Start small. If you are going to OT twice a week, then only go once a week or ask to go every other week. Find what balance works for YOU and your kids. Also, talk with your child’s therapists. Many are very understanding and would be happy to help you come up with a schedule that isn’t too overwhelming and works for all of you.
3. We Feel Guilty for Causing Our Child’s Diagnosis.
If you’re a mom of any kind, you’ve felt this guilt. Did I spoil him? Did I play with him enough? Did I yell too loud? Did I play on my phone too much? There’s this inner guilt that just comes from being a mom.
For special needs parents, the guilt comes from their child’s diagnosis. We are constantly wondering if it was something we did. We may not ever talk about it, but it’s there constantly reminding us that it’s all our fault. This is something I’ve worked on in counseling, and while I am doing better in this area, I still have this guilt pop up every so often. I wonder if it was something I did during pregnancy. If I should have eaten differently or rested more or not taken the medication my doctor said was okay… The problem with this guilt is that it will never end. We will always be wondering, but what if?
- Solution: My counselor asked me a question and it made me re-think things. She asked me if I ever did anything to intentionally harm my babies while pregnant. I genuinely thought back and came up with an obvious answer: Of course not! If I had to guess, I would say you have the same answer and if that’s true then your child’s diagnosis is not your fault. I think the only thing that can fix this type of guilt is acceptance. We think that if we find out the cause of our child’s diagnosis even if it was us, then maybe, just maybe, we can fix it. But the honest truth is we can’t. We just have to accept that this happened and that even if we don’t know why it’s okay and we will be okay.
4. We Feel Guilty Because Siblings Don’t Get as Much Attention.
If your special needs child has siblings, it’s easy to get pulled in different directions. My daughter requires a lot of extra care. She has a feeding tube and has spent a lot of time in the hospital. As much as I hate to admit it, it’s hard to give my son the same attention that I give to her. It’s hard because I am with her at therapies, appointments, hospital stays, and I’m her caregiver. I don’t want my son to feel left out or not feel loved, but at the end of the day, I am exhausted and sometimes I don’t have much left to give.
- Solution: Sometimes the best solution is the one that makes the least amount of sense. Stop feeling guilty. I know it’s tough, but in this situation, there’s probably not much you can do to change things. You are a good parent and you aren’t purposely trying to give more attention to one child over the other, it’s only because of your circumstances that you do. Instead, when you do have a minute or two, devote it to that sibling. Take them out for a little date or for some special bonding time. It doesn’t have to be extravagant, it can be as a simple as grabbing a treat, playing a board game, or reading a book together. It’s those little moments that they will remember forever.
5. We Feel Guilty for the Decisions We’ve Made or Have to Make.
This one is a tough one. I still feel the guilt eat away at me from the many decisions I’ve had to make for my special needs children. I feel guilty about every test and every procedure we chose to do. Should we have skipped it? Should we have waited? Should we have done something different? I feel guilty about so many of the decisions I’ve had to make over the years and even recently, but I’ve also been so very thankful for the decisions I’ve made.
- Solution: We as parents are responsible for our little ones. We make the best decisions based on what we currently know and from the research we did. Sometimes they are good decisions and sometimes they are bad ones. Think back over the decisions you made for your special needs child. Did it help their quality of life? Did it improve their health? Did it have any kind of positive impact? If so, then these are the decisions you need to focus on. Focus on what you did to fight for your child and how it brought them to where they are today.
6. We Feel Guilty for the Way We’ve Treated Our Spouse or Partner.
Maybe it’s just me who feels guilty about this, but I know there have been times where I’ve treated my husband badly. The one that sticks out the most in my mind is when my daughter was a newborn. We didn’t know yet that she had medical problems or that she was suffering, and the stress and lack of sleep had brought us to our knees.
It was 3:00 am and I remember my husband and I were literally screaming at each other and at one point I screamed a bunch of things that were absolutely awful and once they left my mouth I knew I couldn’t ever get them back. I have been annoyed with my husband, gotten angry with him for no reason, lashed out him, and so many other things over the years and yes, while I’ve tried to make it right, I still feel guilty when I think about it.
- Solution: Get help. I first had to accept that I was having a hard time handling life at the moment. I went to counseling, got on an anti-anxiety medication, and started feeling better. Then, I talked to my husband and asked him to go to counseling with me. I knew we could use some help on how to handle the high-stress situations we dealt with and how to communicate with each other and treat each other with more respect. I truly believe that’s a big reason we’ve been able to keep our marriage together. We still have a lot of ups and downs, but we are learning how to deal with the stress personally and together and we are working on communication, love, and respect.
7. We Feel Guilty for Being a Bad Friend or Family Member.
This one is a tough one. We have to juggle so many things in our personal lives, that usually it’s our friends and family members that tend to get cut short or out altogether. It’s not that we don’t want to hang out with a friend or give a call to our parents and grandparents, it’s that we literally spend every waking second of the day giving of ourselves, our emotions, and physical strength to our special needs child. We’re exhausted. We don’t think about making that phone call because we’ve been on the phone all day with the doctor. We don’t ask that friend to go out because we’ve been out all day at appointments and we are exhausted or we feel guilty for leaving our child. We love our friends and family and always will, but sometimes we just have a hard time showing it.
- Solution: Explain to your friends and family what is going on. Make sure to tell them you love them. If they refuse to give you the understanding and support you need, then move on. For those that continue to love your family no matter what, do what you can to keep in contact with them. I learned that I had to make it easy for myself or I would get overwhelmed. Since I am constantly driving my kids to therapy and doctor’s appointments, I downloaded an app called Voxer. This uses voice messages or voice-to-text which I can use while driving. It made it so I could keep in contact on my terms. I also like using group messaging on Facebook to talk to my family and I love texting the occasional meme to family and friends too. It may not be conventional, but once you find out what is easy for you and let go of the guilt, you will have an easier time keeping up.
8. We Feel Guilty About Getting a Break or Putting Self-Care First.
I recently told my husband that no matter what I was doing, no matter who was watching the kids, no matter the reason why, I felt guilty. I think it’s just that parent guilt where you feel stressed without a break, but you stress about the break you are getting and what is happening at home. I’ve gotten better at dealing with this type of guilt because I know that getting a break or caring for myself makes me a better person and especially a better parent.
- Solution: Take more breaks! Seriously, this is so important. Self-care needs to be a priority so you can think clearly, make the right decisions, and not be resentful of yourself, your children, or your spouse. As moms, we are going to feel guilty no matter what, but forcing yourself to do something for yourself is only going to make you a better person.
9. We Feel Guilty About Needing Help to Care for our Child/Children.
As a special needs mom, I most likely am always going to need help. Both my children have therapists, my daughter has a home health nurse, and we have respite care workers to help my husband and I get a break and occasional date night. I felt incredibly guilty about all of these – especially having a home health nurse. But at some point I realized, I cannot do it all alone. I am not a therapist or a doctor or nurse, I am a mom, and while I am happy to be a caregiver, I still have to have help sometimes.
- Solution: Recognize that you can’t do it all. It’s okay to ask for help, it’s okay to use that help too. Getting help in caring for our special kids just shows that we are parents who care. We want the best for our child and we understand that in order to do that we need outside help. Don’t get burnt out doing it all yourself. Take today to make a list of people that have offered to help in the past and ask if they could come help you once a week or even once a month. You’ll be surprised what a difference it will make!
What about YOU? What things do you feel guilty about as a special needs parent? How do you cope with guilt?