Category Archives: Respite Care

Making the Decision to Place a Child in a Residential Center

Nicholas

One in six children in the U.S. lives with a chronic disability. Some will be placed in a residential facility for long-term care. For parents of some children with cerebral palsy, this can be an excruciating and exhausting choice. I know this firsthand.

I made the decision to place my son Nicholas in a residential center when he was 10, although he didn’t move in until he was 12. By sharing my story and details on how the decision came about, I hope to help parents who may find themselves in the same situation.

Nicholas developed cerebral palsy as an infant as a complication of a heart defect. Every medical doctor told me they “were cautiously optimistic” that he would one day walk and talk. Of course, I wanted to think this would be true. I started him in a preschool program that served both typical and special needs toddlers, thinking this would give him the best incentive to overcome his challenges.

When Nicholas was six, I was a member of a counsel at our county Developmental Disabilities Services Organization. A mother there told us how she had placed her older school-age daughter in a residential program in another state. I was horrified. I could not – would not – even think about that as a possibility.

Nicholas attended a very good elementary day program at The Jesse Kaplan School in Rockland County, NY. He progressed well and was very much liked there. But as he got older and bigger, I knew he needed more social stimulation than he was offered at school and getting from home. He also needed more sophisticated technology to assist with different positioning options as he was getting too heavy for me to lift safely. I also knew that even if I had Oprah- or Bill Gates-type money, I could not provide Nicholas with the emotional and mental stimulation that a large, professional care center would offer.

Nicholas’ Doctor Weighs In

I sought advice from a trusted doctor, Nicholas’ neurologist, Dr. Bob Wolff. He told me that children like Nicholas, who could understand their environment but are nonverbal, tend to become clinically depressed. They may even require antidepressant medication if they don’t receive appropriate stimulation. When I heard that, I knew I had to do better for Nicholas, so I started asking about and researching options.

Years earlier, my brother, who is a teacher, had mentioned that a colleague’s brother was head of The Center for Discovery, a residential center about an hour north of my home. I remembered the conversation, although I wouldn’t even consider the thought at the time. Now, I had to think of the reality of my older daughter and younger son’s needs along with Nicholas’ requirements. Even though I had a good support system in place, the physical impact of caring for him was having a detrimental effect on all concerned.

Involving the School District

By law, school districts are required to offer an education to special needs children. If they can’t meet the child’s needs, they are required to pay the educational component of an alternative placement, until the child is 21. Therefore, the school district has a financial interest in any decision a family makes to put their child in a residential center.

The key to whether the district is meeting the child’s needs is contained in his or her Individual Education Plan (IEP). Many districts opt to keep students local to limit spending. Parents need to be assertive with school officials if they believe the goals of an IEP are not being met, and should insist on arbitration or even consider litigation if necessary. Fortunately, my school district was very supportive of my choices when it came to Nicholas’ need for placement.

Research and Placement

I researched The Center for Discovery, which I soon learned had earned a reputation as a model facility for people with disabilities. I spoke to parents whose children were already there, interviewed doctors, and visited the school and residential quarters unannounced. Everyone said the same thing: it was a great place. Many parents told me their one regret was they hadn’t placed their children there sooner.

I applied for Nicholas and we waited 18 months to be notified that there was an opening. It’s the call I knew we were all in need of but, at the same time, the one I dreaded.

I explained to my two other children that Nicholas was going to the “Ivy League” of college for himself, just like one day they would want to find the best fit for college for themselves.

It has now been almost six years since Nicholas entered The Discovery Center. Nicholas is thriving. Last year a young woman resident asked him to the prom! I, too, regret that I did not begin the process for placement sooner. The therapists are always trying new positions and equipment on him, and he has been very much embraced by the school staff and his housemates.

Of course, I never feel like I see him enough. I still get emotional when I leave him, but I have the same feelings about my daughter being in college and my younger son preparing for college.

I recently saw the mother who had placed her daughter in a residential program many years earlier. We laughed about how I had come full circle in my feelings. We learned that we had to put aside our emotions and think about what was best for our child, just like we do with our typical children.

Nine Tips for Parents on Making a Residential Placement

  • 1) Research the laws in your state. A good place to start is the National Dissemination Center for Children with Disabilities, which offers links to state agencies where you can get information and help.
  • 2) Find a location near you. You’re going to want to be close for regular visits and in case of an emergency.
  • 3) Check the facility’s reputation with doctors and referring agencies.
  • 4) When you visit the center, take along other friends and family members. Everyone will have a different perspective and will see things or think of questions to ask you might have missed.
  • 5) Ask the center for phone numbers of other parents whose children are there so you can contact them for their experience.
  • 6) Note how the staff handle your questions about safety and cleanliness. Are they defensive? Do they seem willing to cooperate with you? Drop in unannounced to see if you notice anything different.
  • 7) Check staffing ratios. Ask if there is 24-hour medical care available. How far away is the nearest hospital?
  • 8) If you live in an area without a lot of choices, consider getting involved at the center as a volunteer. You can observe what’s going on and even help expand activities offered.
  • 9) Once you make a placement, stay involved and supportive of staff. At many centers, staff members are often good-hearted and willing, but they are stretched thin. Make sure you give compliments and assistance as freely as constructive criticism.

More cerebral palsy information and other valuable resources for parents, families, caregivers and others are available from Cerebral Palsy Family Network.

 

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How to Take Time for Yourself

Respite care. How many parents really take advantage of this short-term break from caring for a family member with cerebral palsy? As a single mother, I was offered this many times, but never took advantage of it. My main concern was who would stay with my daughter with CP and could I trust them. My family is not able to help me with my daughter, so I have to depend on outside care for help.

With the demands of the world, you find that your plate gets too full and your shoulders begin to ache from all of the stress. Taking one evening, one day, or one weekend can help with that stress. I try to take one weekend every couple of months and do something for myself. I have a caregiver that stays with my daughter at my house for the weekend, and I plan time away.

Recently, I have found a little remote lodge and retreat in a country side location in Idaho about two hours away from my home. I rented a cabin with my own screened in porch and personal hot tub. This was located directly next to a creek in a beautiful area full of trees and peacefulness. Now you do not have to go to the extreme of traveling far away or going to an expensive retreat. Maybe plan a weekend with a friend and go sightseeing, or stay in a nice hotel suite and catch a movie. Anything that you can do that does not require you to have any responsibilities of taking care of anyone else but yourself is the whole point of respite care.

Once when I took one of my weekends away, I signed up for a watercolor painting class in a mountain location. The drive there was beautiful and the fresh mountain air was relaxing. I came back home relaxed and excited about learning something new. Finding a craft or a hobby can help with decreasing any stress that one may feel. Finding that one thing that you truly enjoy will help put a smile on your face and take the stress out of your body.

What makes you happy? What are some of the things that you like to do that help you to relax? Are there any hobbies or crafts that you have always wanted to try, but have just never found the time to do? Take that respite care time and relax. Taking care of yourself is important, because you want to be able to be healthy so you can be around to take care of your special someone with cerebral palsy. Be happy. Make it fun.
 

About the Author

Denise D. Aggen is a single mother of two daughters who are 23 and 16. Her oldest daughter has cerebral palsy. She is a blogger and writer and is currently working on her Bachelor of Science degree in Psychology. She keeps a blog about raising a child with disabilities and a personal blog about “random things.”

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