dealing with the guilt

[Lis Garrett]

I'm in the process of putting together an article for the April issue of Root & Sprout about how parents of special needs children can deal with the guilt associated with occasionally resenting their child, as well as how they can learn to get over the "why me?" syndrome.

As you all know, I have a special needs child who presents our entire family with daily challenges. We are fortunate our situation is not as challenging as what some parents must deal with each day, yet it is difficult all the same. Do I love my child? Without question. Do I sometimes wish he were "normal"? Yes.

And I know my feelings are not unique. I have a hard time believing any parent (whether he or she has a special needs child or not) enjoys every minute of parenthood, and yet some of the responses I've received from parents so far have done nothing but make me feel even more guilty for acknowledging these challenges and my own limitations as a mother.

I fully recognize and understand that the anger and resentment I feel is not because of my son, the individual (he didn't ask for these problems). Rather, they center around how others perceive him (because he LOOKS normal) and me. When my son is being loud and disruptive and seeking stimulation by rolling on the ground and literally bouncing off the walls, parents look at ME with judgement in their eyes. Even my own mother once remarked, in so many words, that I was a bad mother because I couldn't control my child. Ouch.

I would love to hear this group's thoughts on whether or not you've had similar feelings and what you do to cope. Please understand I am not asking this information necessarily for my own benefit; I am collecting information for an article.

Thanks so much!

[Terena]

My daughter is 13 and unfortunately as she grows, her disabilities get worse. She's losing ground, which is frustrating for everyone. I feel myself grow more and more resentful of the demands on me that increase every year. While other people's children grow up and gain independence, mine becomes more dependent. Sometimes I can hear the sharpness in my tone when my child needs something, and I feel so guilty. As hard as it is for me, she's the one who has to live with it. I try to remember that when my patience is thin. How do I cope? By trying to have fun as much as possible, looking for ways to laugh every day, and spending time with my girl enjoying the time together. She is funny and smart, so we have a lot of fun together. And I try to keep seeing HER, not the disabilities. I don't want to lose sight of the person she is, which I think happens now and then. I get so overwhelmed with her care, I lose my child within all that care. And I remind myself that I am not Wonder Woman; I am human and there are days I won't do everything right and other days I will really hate what has happened to our family. That's okay. I don't have to be perfect or cheerful all the time. Just as long as I pull myself together to be there for her when she needs me and stay focused on the fact that Queen Teen is a wonderful young woman full of joy, strength, and love. We get through it together.

[Susan]

Hi Lis,

As a mom of a once very high needs baby and a child/family psychologist I understand the need for us to have these conversations about the pressures and anger/resentment that can come from parenting a child with special needs.
I used to always feel like I was a bad mother or somehow not doing things "right" because my son never slept and cried constantly. I was tired, stressed, depressed, and yes, angry at times. Even though we can cognitively accept that our children can't help their difficulties, our feelings cannot be denied.

So, I suggest a few things to families when they speak to me about their negative emotions.

1. ALL parents have times when they are stressed and frustrated with their kids. Parenting can be a joy, but also can be very hard, even more so for parents of kids with special needs. It helps to accept that this is a normal feeling and that you do not need to feel guilty about it. Sometimes just acknowledging, "I'm upset with my child now and that is ok. The feeling will pass and we will be fine." is enough to help keep guilt at bay.

2. Just like your child has a support team at school, so does he need a support team at home. One or two parents cannot provide all that a child needs without burning out. The resentment parents feel is often burn out. As human beings we just do not have endless reserves of energy, patience, and good will toward someone that is giving us a hard time (whether intentional or not). I recommend to parents a "tag team" approach, where one parent takes care of certain things, the other parent takes care of others and then you 'spell' each other when your child is not responding well to one individual. This model can work with parents, grandparents, babysitters, etc.

3. As a parent you need to replentish your batteries and remove yourself from the parenting role for awhile to regroup and recharge. This can be as simple as taking a few hours to go to a coffee shop, or local bookstore, a movie, or a quiet place to read a book. You must leave your child with a trusted adult and take time off! And you do not call home every 15 min to check in! You will be amazed how refreshed you can feel after a few hours at Barnes & Noble and you rejoin your family with more energy and patience.

Hope those ideas are useful for your article.

[Trish (wheresthebox)]

Lis,

The advice already given is wonderful, but I just wanted to chime in and say that I have definitely had those feelings. You can feel guilty for everything you haven't done perfectly, for not doing enough for your child, and for doing too much for your child.

For me, the stress level is definitely tied to getting sleep and getting time alone. Getting out with friends or with my husband is great, but I am the kind of person who needs a certain amount of solitude and space to keep my sanity.

Take care,
Trish