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A Caretaker’s Journey

Fall-Journey
We are posting two stories that express the writers experiences as parents. This writer has chosen not to identify herself in an effort to protect her daughter’s privacy. We are grateful to both writers for their generosity in sharing their stories.

This account of a parent coming to terms with her child’s disability, came from a person who wanted to share their path, but wanted to protect the privacy of their child.

I always considered myself very fortunate that my family was healthy and supportive, we had resources, and that I had some security in the work that I did. My children are wonderful gifts, but as my daughter entered her teens I saw that she was having difficulties connecting with people. We just considered her more shy and reserved, but the transition to high school soon pointed to more significant issues. Throughout middle school, she rarely wanted to go to school, but by high school didn’t even want to leave the house. She was anxious and depressed, sometimes around the clock.

Everything started to revolve around this family members issues. We went from being a family with predictable routines to not knowing what any day was going to bring. We couldn’t leave her alone because she was so depressed, angry and frustrated. I had to call on the extended family to be with her when my husband and I went to work. I spent a lot of my time coordinating people and services – the psychologists, psychiatrists, teachers that my child needed on their team. I knew that my other children were not getting the attention that they needed and deserved. They expressed that in various ways, but when one child is in such distress, you have to do what is needed in the moment.

At one point, I felt it was my job as the parent to “solve it.” If I identified the right resources, worked hard, and made sure that she was aware of the support she had, everything would work out. But over time I had to accept that I couldn’t always fix it. You can’t control how others respond to her or treat her. Some teachers, for example, will be supportive and go out of their way, and some will let you – and your child – know that you are burdening them in ways that created additional problems. All of those messages, from both strangers and people familiar to you – will impact your child’s feelings about themselves, and possibly jeopardize their ability to move forward.

When you let go of the expectation that you can fix your situation – or even your child, you move into a period of loss and sadness – strong at first, but lingering over time, striking you when you’re not feeling strong. You look at others with happy children and want that normalcy for your child, and for you. What would it be like to not worry about your childs behavior, or how they will tailspin if someone says the wrong thing? I had to learn the hard lesson of living with what the days brought. Sometimes they were good, or we would have a string of good days, and then suddenly we would be back in the thick of problems, and the feelings of hopelessness would return both for our child and for ourselves.

It was also hard to figure out what the RIGHT resource would be. Medications? That is trial and error, possible side effects. Everyone wants to weigh in on whether that’s a good path, and so often their information is bad. My daughter was completely against trying medications because people had scared her about potential side effects. That meant that even before we started we had barriers that might never be overcome.

Our new reality is a backdrop of anxiety – of wondering when the next shoe will drop. Sometimes I don’t sleep because we are up all night dealing with her anxiety and sadness, or the side effects of the medication. Even at times when she would finally sleep, I would be awake with my own anxiety about the situation. Staying home would make the transition better, but that means abandoning my work and the people who are counting on me to show up. I had no choice financially about working or not. My best resource was, and continues to be, another mother with a child that has similar issues. I could say, “I was up all night,” and she would understand everything that meant because she, too, had been there.I know that I am not unique, and my family is not alone in coping as best we can. There are a few things that I have learned that I would share with anyone who is struggling to help their child:

Find someone who has been through a similar situation and talk to them. Use them as a resource and a sounding board for your thoughts and feelings. It can give you emotional release just to talk through it.

Adjust to your new situation, and abandon expectations that your life will go back to the way it was before you dealt with these issues. Appreciate the good days when you have them, and know that the bad days will come and go.

Sometimes I don’t know if I can do anything right for my daughter, but I know that I will always be her best advocate and love her unconditionally. In the worst times, I would cling to this thought, and expressing that love for her would help me get through.

You will find that you will become more creative in anticipating what your child needs, but it’s important to continually ask them and adapt to changing needs.

Despite the fact that you both love your child, their issues will sometimes be a conflict between you and your spouse as you consider options for care. Everyone deals with the feeling of helplessness in their own way. Be prepared to talk about the potential for conflict, and how to resolve it.

Acknowledge the hurt or resentment of siblings. The shift in the family dynamic is very stressful for everyone, but they need to know that you are aware of the sacrifices they are making. Talk to them about how they feel.

It is sometimes difficult to share your family issues with all the people who might be supportive of your situation, but it can be an opportunity for your family to grow and develop.

At some point, you might find others calling on you to be a resource for them. If you are ready, embrace the opportunity to help.

Finally, know that your anger about the situation you are in is a natural part of your struggle to cope. Humility is a constant companion, too, as you have to acknowledge that many things are beyond your control. “One day at a time” may seem trite, but it is a great way to focus and help you to do what is right in the moment.

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