Parent to Parent

My name is Kimberly Rayfield and my son’s name is Jymere. As a parent of a child with a disability, I know it's hard trying to get everything done in your day—no matter how hard we try we can't always do it. In trying to balance the needs of all of my children, I learned to incorporate new ideas about therapy. In Pennsylvania, early intervention services are provided in natural environments. Natural environments include not just the home but also places in the community that are part of family routines and where young children learn and play.

As a young child, Jymere’s early intervention services were often provided in the community:

• Sometimes the physical therapist and I would take Jymere to the park while my older son, Darryl, practiced basketball
• When Darryl’s games conflicted with Jymere’s PT, we took the physical therapist with us to the gym, where we worked on positioning on the bleacher so that Jymere could watch the game and I could learn how to position Jymere
• The physical therapist also went with us to the supermarket to work on positioning in the cart while I shopped
• We scheduled therapy sessions at a local recreation center, where Jymere learned to ride his bike, play ball, and play with other children on the floor mats
• Jymere, his speech therapist, and I would also go to the library for the “reading for tots” program
• The three of us even went to McDonalds for lunch to work on Jymere’s swallowing
• I used my membership at the Please Touch Museum to bring the occupational therapist and work on Jymere’s sensory motor skills and stretching.

I encourage parents to utilize the resources that are in their community (natural environments) and incorporate them in their therapy sessions, which sometimes involves the whole family. When discussing options with your child’s therapists speak from your heart on what you want your child to try to do or be able to do!

written by Kimberly Rayfield

Since the birth of my twins, at 23 weeks gestation, I have had to learn to transition…transition into parenthood, transition into losing a child, transition to caring for a child with special needs…and it keeps going. Transitioning means: leaving what you have come to know as your “norm” and going to a place that is unfamiliar, different, sometimes exciting but most often scary. I accepted that each transition has had a lesson that made moving through the transition just a bit more manageable.

Transitioning from hospital to home

Few people like being in the hospital. For a fragile child, however, the hospital had a level of security. People and machines that were ensuring appropriate care. As we left, there was fear of losing the extra eyes that watched my child and assured me all was okay; it was leaving the machines that showed me hourly that my child was breathing and functioning appropriately; it was being a parent - in our case, for the first time - with machines and tubes we now took home and had to monitor ourselves. It was scary. Lesson: Ask a lot of questions, be comfortable in what you know and don’t be ashamed to ask about what you do not understand.

Transitioning into in-home nursing care

My home went from being a sanctuary to having many “strangers” - i.e., nurses for day or night shift with different nurses on different days, therapists for all aspects of care - in and out on a regular basis. Things were no longer in their place, things were missing or broken, and there was no longer peace. I set schedules, parameters and still I felt invaded, yet grateful, since the presence of people abated some of the fear developed from leaving the hospital. Lesson: Set ground rules, establish clear expectations on both sides, and make sure that you address any issue early to avoid letting it fester.

Transitioning into early intervention

Now, added to the nurses were therapists. Their goal was to teach us ways to integrate little things into our daily routine that would encourage development. Lesson: Make sure the therapists understand your family life. Be comfortable saying what is realistic with your routine and that you understand the purpose and intent of the activity.

Transitioning from early intervention into preschool

The comfort I had with knowing my child was home was now shattered with a new routine based in a school setting. The separation was both normal and terrifying. I now had to learn a new “system” in the school and learn how to let go of what I had just learned how to manage. Therapies were now done in school and were no longer integrated into the family routine. I was less involved in many ways and was feeling left out. Lesson: Use the team meetings with the teachers and therapists to fully understand their goals and be sure to share what you see and do at home, ask for ways to duplicate what they do to help observe the development, and be able to share your perspective on improvements or lack of. Keep communication open!

Transitioning from preschool to elementary school

When my child attended preschool, the teachers and therapists regularly shared a great deal of information on how she was doing. The preschool staff seemed to have an implicit understanding that parents are worried, protective, and need some coddling or support through letting go and letting the child grow up. When Mari transitioned to elementary school the philosophy changed. Kids are growing up and need to develop independence - and so do the parents. Regular communication continued, but not the minute-by-minute schedule of what was done, just an overview. Lesson: Be sure the Individual Education Plan (IEP) goals align with your developmental expectations for your child. In some areas, you may consider other sources of therapy outside of school, which may still be covered by health insurance, at clinics or by pediatric therapists in your community. School-based therapies often focus on development necessary for doing school work and interacting in school. We added supplemental therapies to focus on general development, such as dressing, walking independently, etc.

No matter what the transition, the challenge, the accomplishment, there is always a lesson. Figuring out what that lesson is and using it to make the next transition more manageable is the biggest lesson of all.

written by Marquitha Gilbert

All parents of children with cerebral palsy (CP) remember the moment they learned the diagnosis. Whether it was shortly after birth or sometime after, once the diagnosis is applied a lifelong learning curve begins. One of the first and most challenging aspects of that learning curve is how to talk with others about your child’s disability.

As parents of young adults (Dillard, age 21, and William, age 24), we want to share things we wish we had understood better when our children were young!

Keep it simple. Parents often learn a great deal about CP while consulting specialists and determining options for therapy. But caregivers, acquaintances, and parents of other children don’t need medical information; it’s fine to share the basics directly and factually.

“CP is caused by a brain injury; most likely it happened during William’s birth.” 

Especially when responding to young children, give them answers in terms they understand.

Q: "What are those things in her ears?" A: “Hearing aids—they help her ears to hear better like glasses help eyes to see better."

Q: “Why can't he walk?" "What are those things on his legs?” A: “Dillard was born extremely early and was very sick, so he needs help with balance. His orthotics support his legs to be stronger.”

If your child communicates directly, encourage him or her to take the lead.

"I need support with my balance because an area of my brain was injured when I was born. I have cerebral palsy; that's all."

The more matter-of-factly questions are answered, the better other people understand that CP is a fact of your child’s life—a challenge, not a tragedy.

Emphasize the positive. When people hear the words “neurological injury” or “brain injury” they may assume CP is progressive or even life-threatening. It’s helpful to say up front that CP is not a degenerative disorder such as ALS.

“Once the brain injury happens, it’s done—the brain injury doesn’t get any worse.”

Help people understand that human development is a process. The consequences of CP may intensify as a child grows taller and heavier (e.g. spasticity may appear more severe, low tone in the torso may make it harder to sit upright). But it’s a comfort to us, as well as others, to say how amazingly adaptable our brains are and that many children continue to gain skills into adulthood.

“Over time, it’s likely that her brain will adapt and find ways to continually improve.”

Use person-first language. Let others know how to describe your child, i.e. a “child with disabilities” rather than “a disabled child.” It’s more than political correctness. Person-first language reinforces that our kids do everything other kids do, just in unique ways.

Acknowledge how your child is specifically affected. Sometimes people try to compare the capabilities of one person with CP to another; they may also assume a child with motor disabilities also has intellectual disabilities. It’s helpful to say that CP manifests in unique ways in each person, and spell out how your child functions.

“CP affects everyone differently. For William, it means he isn’t walking yet and it helps him if you ask simple yes-or-no questions.”

“She has to work hard to sit up and use her computer, but she understands everything you say.”

Disability does not equal illness. When your child looks visibly different, people may assume that she is sick or medically fragile. If that is not the case, people are relieved to know for sure.

“She’s perfectly healthy—she just needs extra time to crawl over to that ball.”

Suggest ways to promote your child’s progress. An unspoken question may be, “How should I relate to this child?” Remind others that your child is a child first, and a child with disabilities second.

“Treat him like you would any child, and encourage your child to do the same.”

“If you don’t believe she can, then she won’t—because you may not do the things that will help get her there. So believe she can and that will help her make progress.”

Model inclusive behavior. If people talk about your child in her presence as if she’s not there, they need you to educate them out of excluding her. Show them how. For example, say your son has dropped a toy and the man in the store next to you starts to pick it up. You can demonstrate your child’s independence.

“Oh, William can pick that up himself. William, pick it up please. But thank you so much for offering!”

If your child genuinely needs the help to retrieve the toy, involve him in the interaction.

“Oh, thank you so much. William, can you say thank you yourself to this man?”

Remember: all your communications about CP help build a more welcoming world. Of course, having a child with CP is exhausting and frustrating at times for our kids and for us; we don’t always have the energy to educate other people about CP. However, it is an effort very much worth making. We are all working to prepare our children for the world; but we can also help prepare the world for them. Whenever we share the joy we have in our kids and our pride in their hard-won accomplishments, we are helping to create the fully inclusive world we want our kids to live in.

Written by Barbara Sieck Taylor and Paula Drew

Input from: Marquitha Gilbert, Lisa Diller, Nancy Ford, Tina Hjorngaard, and Kimberly Rayfield