Cerebral Palsy Diagnosis

Many parents of children diagnosed with cerebral palsy are given little explanation of the cause, severity or future implications of the disorder. Surprisingly, many children may not receive a cerebral palsy diagnosis until they are school age, even though there may have been circumstances at birth that indicated risk of cerebral palsy. Many pediatricians take a “wait and see” attitude when parents present issues of delayed development.

Most cerebral palsy conditions are caused by lesions on the brain. These lesions may be caused by:

• Injuries that occurred during pregnancy or birth (congenital cerebral palsy)
• Injuries sustained in the months or years following birth (acquired cerebral palsy)

While symptoms range from mild to severe, the condition does not get worse as your child gets older. Depending on the level of severity however, a child may be at risk for complications related to cerebral palsy such as developmental delays, failure to thrive, joint contractures, scoliosis or seizures.

Cerebral Palsy Diagnosis

Spastic Cerebral Palsy

Known as the most common form of cerebral palsy, spastic cerebral palsy causes tightness in the muscles. Patients have stiff and jerky movements and will often have difficulty letting go of something in their hand. Many children with spastic cerebral palsy rely on medications, therapies or surgical interventions to manage their spasticity and prevent secondary complications.

Athetoid Cerebral Palsy

Athetoid cerebral palsy (fluctuating tone) is a neurological disorder resulting in a variety of movement disorders that result in involuntary and uncontrolled movements. A child may be shaky and unsteady and may make frequent, abrupt movements. Due to the mixed muscle tone involved in athetoid cerebral palsy, a child may experience difficulty with fine motor skills and maintaining torso control.

Ataxic Cerebral Palsy

A less common form of cerebral palsy is ataxic cerebral palsy. Ataxic CP disturbs a child’s sense of balance and depth perception, resulting in jerky, uncoordinated movements. A child with ataxic cerebral palsy may exhibit mixed tone and experience challenges with controlled movements.

Healthcare Concerns

Depending on the level of severity, cerebral palsy may result in a variety of healthcare concerns including inadequate oral motor skills and compromised ability to consume adequate fluids and nutrients. Untreated, severe oral motor dysfunction can result in dehydration and failure to thrive. Other healthcare concerns may include childhood osteoporosis, movement disorders, gastro- esophageal reflux disease (GERD), contractures of the extremities, and scoliosis.

Neuromuscular Issues

These affect the nerves that control voluntary muscles. “Neuro” indicates the origin of the disorder is at a neurological (brain) level. Left untreated, neuromuscular issues can severely impact a child’s quality of life and future development.

Seizures

Not all children with cerebral palsy suffer from seizures, just as not all children who experience seizures have cerebral palsy. Seizures result from abnormal and excessive discharges of nerve impulses originating from certain brain cells. Some of this excessive activity reaches the skeletal muscle fibers and triggers the violent contractions typical of many seizures. Seizures differ depending on the portion of the brain involved. Seizures that occur in only one hemisphere or part of the brain are known as “focal seizures.” Seizures that occur in both hemispheres are referred to as “generalized seizures.”

Range of Motion Issues

Range of motion (ROM) is the measurement used to describe the degree of flexion (how far it can bend) and extension (how far it can stretch or extend) in a joint. ROM is usually measured by degrees. Many children, especially those with spastic cerebral palsy, experience limited range of motion. Children with hemiplegia may experience limited range of motion involving the extremities on one side of their body. Children with quadrapalegia may experience range of motion issues with all extremities including the trunk, putting them at risk for spinal scoliosis.

Early Intervention

Receiving a cerebral palsy diagnosis allows parents to move forward and begin to pursue treatment and therapy options for their child. Early intervention is key to providing children with cerebral palsy the highest quality of life possible. For information about managing your child’s cerebral palsy, visit our Cerebral Palsy Treatments and Therapies page.

Pediatric Stroke & Cerebral Palsy

Most people think strokes affect only adults, but they can also occur in children, even before birth. In fact, pediatric stroke is one of the leading causes of death in children. Children who have suffered from a pediatric stroke also have a high chance of developing cerebral palsy. Learn more about pediatric stroke in our latest blog.

http://www.cpfamilynetwork.org/blogs/pediatric-stroke-and-cerebral-palsy

Special Needs Parents: How to Cope with Grief

Special Needs Parents: How to cope with grief
September 24th, 2012
By Karen Wang

Three times in the past two weeks I’ve been asked, “How do you remain so strong?  How do you cope day-to-day?”
 
The Process of Grieving
That’s a big question for many parents of children with disabilities or medical needs.
The famous “five stages of grief” aren’t necessarily predictable when a parent is dealing with a child’s loss of health or developmental skills.
The denial, anger, bargaining, depression and acceptance may be a whirlwind; one or more stages may pop up unexpectedly when a child misses a milestone (I was hit hard when my 3 year old began to surpass his 9 year old brother in many developmental areas); or the parent may find a completely different way of coping and problem solving.

The Right Way to Grieve
There is no such thing as a “correct” way to grieve.  At one end of the spectrum, a parent may suffer symptoms of Post-Traumatic Stress Disorder, especially after witnessing a child’s medical procedures or life-altering events.

At the other end of the spectrum, some parents report no feelings of grief or loss, and take a pragmatic approach to supporting their children’s needs.  According to Laura Marshak and Fran Prezant, co- authors of Married With Special Needs Children, these are all healthy, natural reactions.

My Losses
When I realized that my son was developmentally delayed and would not have a typical childhood, I felt a sense of loss on many levels.
First there was the loss of my own expectations for my son.  I also walked away from my teaching career and my incomplete doctoral dissertation to care for my son full-time.
I lost my health, partly due to the stress of being a caregiver, with frequent infections, chronic thyroid problems and even cancer.
I lost many of my friendships, professional relationships and family relationships because I was physically and emotionally unavailable to everyone except my son.
Feeding and calming my son required 100% of my energy around the clock, and he did not accept alternate caregivers. I packed up and moved to Planet Autism.

Emotional Memory
Ten years later, I still feel sadness or sorrow from time to time.  Both of my children were screamers when they were little; so when I see relaxed, happy, social babies and toddlers, I am reminded of what I missed.
“But you have two beautiful children,” a friend told me when I confided this to her.  I do enjoy  and cherish my children – even at their fussiest!  But I also remember the stress of not being able to comfort my baby, and knowing that the intense, long periods of screaming were a symptom of a larger, lifelong issue.
Emotional memories such as these can be triggered at any time by a reminder of an emotional event.
OK, so grief and sorrow are normal for parents of children with special needs.  The question is:
What am I going to do with my grief?

1. The Calm Mom
 I’ve found that the same methods that alleviate my son’s panic attacks also help me deal with everyday stress.

In her book Becoming A Calm Mom, author Deborah Ledley recommends tools for developing a calmer lifestyle based on the principles of cognitive-behavioral therapy.  She starts with identifying the negative thoughts and behaviors that a person wishes to change.
It is necessary to allow enough time to make big and small decisions, since those are a major source of stress for parents.  Time is also needed to strengthen communication and relationship skills, because honesty and reciprocity are the fast track to becoming calmer.
When these new habits are in place, breathing exercises, positive visualization, muscle relaxation and other relaxation strategies provide physical and emotional calmness.

2. Spirituality
On many days I think that the only two things going for me are my maternal instinct and my faith in a higher power.  Each day begins and ends with prayer.  During the day, I consciously try to offer every breath of my body as a prayer.
My autistic son has been my spiritual teacher since the day he was born.  Because of him, I feel the connectedness of life more fully, and my perceptions of the world are heightened – colors are brighter, emotions are stronger, moments seem frozen in their sweetness and fragility.  I carry those moments of awareness with me during my darkest hours.

3. Volunteer Work
Sometimes it helps to remove the focus from my family’s needs and to do something to help others. I’ve been doing various types of community volunteer work with my kids since they were babies.
I once taught an adult education class while wearing my infant son in a sling.  When my son was a toddler, we assisted with worship services at a nursing home.  I always have my younger son with me when I volunteer at his older brother’s school.
Last summer we ran a lemonade stand at a community garage sale and donated all of the proceeds from the lemonade stand to a community group.  If I can’t find a volunteer opportunity where my kids are welcome, I create an opportunity!

4. Research And Advocacy For My Child
I may as well come out and admit it: in my heart, I’m still an Ivy League academic.  I dive right into the medical research databases, and I know what baloney smells like.
I am able to discuss my son’s education and therapy with intelligence and clarity, and I am able to exchange helpful ideas with his team.  I am able to implement the results of my research at home, and I’ve seen my son benefit from my efforts.  That’s empowerment all around.

5. Learning To Enjoy My New Normal
I could complain for a really long time about the 10 years of sleep deprivation torture that I’ve endured.  But complaining doesn’t change it.
Instead I choose to reflect on what those long nights have revealed to me: the hours spent cuddling a wide-awake child on the sofa in the dark; the long walks at the crack of dawn; knowing that I don’t regret my losses, because in return I gained something that I had never imagined.

6. Keys To The Universe

I recently discovered The Autism Mom’s Survival Guide by Susan Senator, an outstanding book about everyday coping.
The author emphasizes the importance of self-care for all caregivers.  She interviewed parents in the autism community and drew from her personal experience to produce a list of suggestions for dealing with stress, which she calls “The Keys to the Universe: Small Pleasures That Make A Big Difference.”
Some of the items on the list include:

• Taking just a few minutes to spend on a hobby
• Meeting a friend for dinner or coffee
• Making the beauty of nature part of the day (even if that means just buying flowers at the grocery store)
• Listening to music
• Visiting a website that helps you with your overall life philosophy
• Stimulating your intellect
• Challenging yourself physically
• Indulging in a small treat.

Grief, sorrow and all types of intense emotion can change anyone, for better or for worse.  I know that I am a different person now.  But maybe this is the person I was supposed to be all along.


About the author:
Karen Wang is a Friendship Circle parent. You may have seen her sneaking into the volunteer lounge for ice cream or being pushed into the cheese pit by laughing children. She is a contributing author to the anthology “My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities”

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Isolation room for children with disabilities - STOP THIS NOW

Lately we have been discussing the education systems methods of isolating children with disabilities.  Some teachers use them to punish children. Many times, placing children in the rooms is a convenience for frustrated employees. And there is little evidence that seclusion helps children but plenty of evidence that it hurts them.  Have any of you or a loved one been put in one of this isolation rooms before? 

http://bit.ly/seclusionrooms

For medical and legal information for your child with disabilities please visit:

http://www.cpfamilynetwork.org/

Diary of a Crisis, Part 2: Shock and Outrage

Note: CP Families editor Lee Vanderloop recently experienced a health care crisis with her daughter, Danielle. Part II of her story appears here today.

By Lee Vanderloop

Hematology, immunology, infectious disease, epidemiology, pancytopenia, and bone marrow biopsy were several of the medical terms we encountered during that frightening week of hospitalizations. In my 27 years of caring for our daughter, I have had lots of experience in a number of “ologies;” namely gastroenterology, pulmonology and neurology, but it seemed we were now destined to experience additional disciplines of medicine that we had not yet encountered.

Danielle’s initial diagnosis was double aspiration pneumonia. It has been my experience that few, if any, x-ray physicians or technician have ever been able to interpret Danielle’s chest x-rays accurately due to her severe scoliosis and history of respiratory issues. The doctor this time, however, was confident in making his diagnosis. We would learn almost a week and a CT scan later that something significant had been overlooked; Danielle’s left lung had collapsed at least nine months earlier.

But more complications arose. About five days into the admission, a physician from Infectious Disease walked into Danielle’s room, shaking his head back and forth. He said the antibiotics weren’t working. I was confused. It appeared from Danielle’s improved respiratory status and almost perfect oxygen saturation levels that the pneumonia was responding nicely to the antibiotics. But the doctor said a review of her hematology lab results showed a virus or bacteria was now attacking Danielle’s bone marrow and was not responding to the antibiotics.

Bad Prognosis and Outrage

He talked about a dramatic drop in Danielle’s platelets and other diminishing values as he escorted me to the computer and pulled up the results of Danielle’s recent lab work. He quickly scanned through the lab results, but all I could see were several red lines running horizontally across the pages. He asked if Danielle was a “do not intubate” and when I told him that she was, he simply shrugged and walked away! I guess I was to take that as, “We can’t do anything further for her, Mom!”

I was angry and shocked by his insensitive approach and method of communication, and I let everyone know it! His demeanor was unacceptable. I voiced my outrage and disbelief to the next round of doctors that came through. I was told they would talk with the physician who made the diagnosis and get everything clarified for me. At that point, I was so outraged and angry by the presentation of this diagnosis that I couldn’t even grasp the meaning of it. BONE MARROW was echoing through my mind like a mantra, over and over.

In my shock at the physician’s behavior I hadn’t begun to process the implications of this new diagnosis. I had more questions than answers and I was determined to get answers. I communicated my desire to have Danielle transferred to another hospital where they had years of her records on file from multiple surgeries, pneumonia bouts and other medical events. The transfer occurred the morning after my request was made.

Sadly Danielle has passed away, but her mother Lee Vanderloop is helping other families daily as editor for the CP Family Network website. 

http://www.cpfamilynetwork.org/ 

Diary of a Crisis, Part 3: Major Error and Tears

Note: CP Families editor Lee Vanderloop recently experienced a health care crisis with her daughter, Danielle. Part III of her story appears here today.

By Lee Vanderloop

After settling in and giving history to the admitting physician at the new hospital, meds were ordered and additional IV antibiotics hung. Several hours had passed when Danielle’s nurse entered the room with several medications. If I’m in the room at the time, it’s usually my habit to inquire as to what meds they’re administering, or what IV they’re hanging. The nurse told me: Pulmicort, her anticonvulsant, Tegretol and the blood thinner Heperin.

I stopped her right there and asked her who had lost their mind and ordered Heperin? Danielle’s bone marrow was making inadequate amounts of platelets and greatly reducing her body’s ability to clot blood. She definitely wasn’t in need of a blood thinner!

I demanded the name of the ordering physician. A physician who had made rounds earlier entered the room. He told me I was right and apologized for the error and assured me that the Heperin would be discontinued immediately. I asked him how such an error could’ve been made, and was informed that with non-ambulatory patients such as my daughter, anti-clotting therapy was standard protocol with admission. I was speechless at the thought of any order being written without first consulting the patient’s chart, med list and allergies.

“We’ll Make Her as Comfortable as Possible”

The day went on with repeated blood draws, medication administrations, and consults with various physicians. A chest x-ray was ordered but was of an inadequate quality to interpret, so a CT scan was ordered. We would not learn of the results until the following day, on Danielle’s birthday.

Danielle would be spending her 27th birthday in the hospital, but not without cake, balloons and family! We had several special visitors that day. The first was a doctor from general medicine, who agreed that it appeared some form of bacteria or infection was attacking Danielle’s bone marrow. But, he said, without a painful bone marrow biopsy there was no way to confirm or rule out the diagnosis of Pancytopenia. He ended with “We’ll make her as comfortable as possible.”

Then, a very special person in our lives appeared in the doorway, Lucy. Lucy had been one of Danielle’s many nurses and had experience in oncology and hospice. Lucy listened in as the physician was communicating how things would progress as Danielle’s immune system failed her. We discussed antibiotic therapy at home with visiting nurses and the eventual need for a central line.

I rejected the thought of a central line until absolutely necessary, if at all. When the doctor left the room, Lucy all but ran to me, and we cried in each other’s arms. I was at my breaking point in watching my child suffer. When hearing our wail of tears from outside the doorway, Lucy’s husband Matt (also our pastor) entered the room. An intimidating 6’2” with the heft of a football player, Matt came across the room in three steps swept me into his arms and held me tight as I cried my heart and soul out.

I asked Matt through words broken by tears, since he was a pastor and should have a direct connection to God, why God hadn’t seen it in his mercy to take my baby home and spare her further misery. I begged him to please ask God to take her home.

After several moments I collected myself and we left the room, headed to the cafeteria for a much needed cup of hot tea.

Sadly Danielle has passed away, but her mother Lee Vanderloop is helping other families daily as editor for the CP Family Network website. 

http://www.cpfamilynetwork.org/ 

How I Got Medicaid to Pay for Disposable Diapers

By Xiomara Montes

My daughter, Xaymara, is four years old. She has spastic quadriplegic cerebral palsy, as well as  epilepsy, seizure disorder and cortical blindness. We are a military family. When Xaymara was born premature at 29 weeks and we could see her development delays, we decided to move from Puerto Rico to the United States to provide her a better quality of life. We gave up everything we had in Puerto Rico to make the move, but her health and medical care were the most important things to us.

Xaymara receives Supplemental Security Income (SSI) and is also covered by Medicaid. As a military family, we also have military insurance. This insurance has paid for all the doctors, specialists and medical equipment that my daughter has needed. The one item we had trouble getting our military insurance to cover was disposable diapers. Here’s how we solved that problem:

First, we submitted the expense to the insurance company and received a denial. Then we called the company that supplies the diapers and told them we had been denied, but that we were covered by Medicaid. The company asked us to send them a “letter of necessity” from our doctor. We called the doctor and asked him to fax the information to the company. We also sent the company our Medicaid information. When the company received approval from Medicaid, they began sending us a monthly supply of diapers.

The lesson from this story is that even if you are denied by one agency, keep trying. Also, enlist the help of the company that sells the product or service you need.

Letters of necessity are super important when trying to get payment for equipment or supplies. For more information read Tips for Writing Letters of Medical Necessity.

CP Family Network offers more information on Medicaid and other government funding programs for children with cerebral palsy. Other helpful websites include:

http://www.medicaid.gov

Animals help those with Special Needs

“Feathers,” Our Dog-Eared Miracle

By Dana DeRuvo, R.N

When my son Nicholas, who has cerebral palsy, was 4, my other children, Rachel and Jackson, starting begging me for a puppy. Just what I needed.

As any parent of a child with special needs knows, so much time is spent going to doctor appointments, therapists, and school meetings – not to mention working at a job and parenting other children – there’s hardly any time left for anything else, especially something that needs to be fed, potty trained and cared for.

On the other hand, you still have to maintain some semblance of an emotionally healthy household. So I reluctantly started looking at dog possibilities. That’s when I came across Canine Companions for Independence (CCI).

How Dogs are Trained

Started in 1975, CCI trains golden retrievers, Labrador retrievers or cross breeds of the two to assist physically disabled individuals lead a more independent life. It is a non- profit organization that relies solely on private donations.

CCI gets its dogs from prearranged breeders. At about eight weeks of life, puppies are given to foster families, who teach the young dogs up to 50 commands. At about a year of age, the dogs are then sent to one of six CCI training centers across the country for “college level” training. At this point, the dogs are reevaluated as to temperament, health issues, and any other factor that the very experienced staff may decide rules them out as a companion dog. At about 18 months, the dogs attend a two-week program where they are matched with candidates.

How Families are Selected

To be selected as a match for a dog, Nicholas and I had to apply, be interviewed and be accepted. The criteria are fairly narrow and the process takes several months. There also can be a long waiting list. People selected for a dog also have to go through training and be evaluated for how well they work with the dog. For more information about applying for a dog, visit www.cci.org.

We only had to pay $50 for the application process, even though these dogs are valued at over $50,000 after all the training is done!

Since Nicholas was five years old at the time, he was one of the youngest recipients in the country to be accepted and matched with a CCI dog. We had to attend a very extensive and exhausting two-week training program. It was more intense for me than attending nursing school. But it was worth it when we were matched with our beautiful golden retriever.

“Feathers” became my fourth and best child. In so many ways, Feathers and Nicholas were alike. They only wanted to give and receive love. They also both had frequent ear infections.

Nicholas was acutely ill the first five years of his life. When Feathers came into our lives, it brought a sense of “normalcy.” After all, we were now just a typical family with a dog! We started celebrating joyful times. I felt like a new mother all over again, bonding with Feathers the moment I laid eyes on her. This also allowed my family to begin to heal after so many years of living with Nicholas’ illnesses.

We were lucky enough to meet Feathers’ “foster mother,” Robin, who raised her and taught her basic commands. Robin presented us with a photo album any parent would be proud of: in it were Feathers’ baby teeth and pictures of her wearing the yellow cape that symbolized her as a puppy-in-training. (A CCI “graduate dog” wears a blue cape).

Working with Feathers

One of the most difficult tasks I had when we were out with Feathers was explaining to people that when she was wearing her cape she was “working,” and could not be petted or given treats unless given the command. Be sure if you see a dog with a cape that you ask the owner’s permission before you approach the dog or touch it.

We often took Feathers to restaurants. Sometimes the seating host would warn that dogs weren’t allowed, but when I explained that Feathers was “working,” they let us through. Sometimes they even brought water for her. These dogs have full Americans with Disability Act (ADA) rights and can go on a plane, inside restaurants or movies theaters as long as they accompany their owner.

Feathers’ main job was to be a companion to Nicholas. She would lie close to him so he could touch her. If a toy was dropped, she picked it up. When I threw a ball, she would retrieve it and drop it in Nicholas’ lap. On the way to school, Feathers would also go up to the most disabled child on the bus and lay her head in his or her lap. She sensed how much joy and calm she brought.

My children and I quickly became popular on the volunteer speaking circuit. We took Feathers to each of their classrooms and schools and talked about CCI. Everyone enjoyed the presentations, but Feathers was always the highlight as she proudly performed a few tasks for the eager students.

At the end of the sessions, Feathers would lay calmly while the children gathered around to pet her. Even the most fearful child was transformed by her gentle nature. We expanded our speaking locations to include as many religious organizations and community events as were willing to listen to us talk about CCI experience and Feathers.

Now I get to share my experience with Cerebral Palsy Family Network, which provides so many good resources and information to families touched by CP.

Feathers Drew People to Nicholas

One of the most powerful lessons I first learned about having a child in a wheelchair was that people, adults especially, would want to approach us but they weren’t sure how to do it appropriately.

Children were better. They would just come up and ask questions. I never minded this, since it gave me an opportunity to answer their questions accurately. But once we had Feathers, it broke all barriers and people would willingly approach us.

Feathers was like a magnet. People would come up and start asking questions and engaging with Nicholas. Nicholas would smile and laugh, which would engage them even more, and they would start talking to him, pointing out his beautiful smile and soft skin. This kind of interaction was terrific for Nicholas, and also gave me a chance to talk about cerebral palsy and CCI.

When President Clinton’s chocolate Labrador, Buddy, passed away, I sent him a letter telling him of all the great work that CCI does. I suggested that he consider being an ambassador for them. I received back a thoughtful letter saying how lucky I was to have my family and Feathers and how you never know what direction life will take you. My letter “from Bill” is hanging prominently in my home.

Feathers died September 23, 2009, at the age of 12 and a half. I will never understand why Nicholas had to endure so much pain and suffering in his life, but I do know that having Feathers in our lives also brought a lot of love and joy.

Dana is a nurse and lives in New York. She has published a memoir, The Ties that Bind, One Family’s Journey of Compassion with a Special Needs Child. Her son, Nicholas, is now 18.

Is Summer Camp in Your Child’s Future?

By Leia Rogers

Summer is almost here and if you’re a parent of a child of a certain age, you start hearing chatter about summer camps, day camps and all fun activities typical children enjoy. But what about your child who uses a wheelchair, or has difficulty speaking or eating? Is this in his or her future?

Definitely! There are camps in many states and across the nation that serve children with special needs. At least 32 camps specifically serve children with cerebral palsy, according to Needymeds.org, an organization that helps find affordable medications for those who can’t afford them.

But how do you choose the right camp? And, more importantly, how do you know whether your child is ready for a camp experience?

Summer camp can do wonders for a youngster’s self-confidence and social skills, not to mention new skills learned from camp activities. Sure, it can be hard letting go, especially if your child has a severe disability.  But keep in mind that even though they miss you, they’re probably going to have a ball!

Choosing a Camp

The American Camp Association provides a wealth of information about types of camps and helpful tips for choosing one. Best of all, it offers a searchable database of U.S. camps. Just plug in your requirements, such as camps that serve children with mental or physical disabilities, and appropriate camp choices appear. You can even plug in cost parameters.

Another option is to call local chapters of major disability organizations about camps in your area. Many organizations publish lists of camps and can connect you with camp directors and former campers.

Paying for Camp

Of course, part of your research will involve figuring out what you can afford. The cost of camps varies widely, with some high-end special-needs camps costing thousands of dollars for multiple-week sessions.

You can help fund your child’s camp experience by applying for scholarships. Experts say to do so from December through March, because the money is gone by April or May. If you have missed the boat this year, you can start thinking of next year. The early bird gets the worm in terms of scholarship funding.

Still other sources of funding include charitable organizations and fraternal organizations such as the Lions, Kiwanis, and Rotary Clubs, all of which sponsor special-needs camps. And depending on your child’s specific special need, he or she may be eligible for financial aid from your state. Other sources of scholarships include religious or ethnic charities.

One thing to know: You usually first need to find a camp that can take your child — most of these organizations send the scholarship money to the camp in the child’s name, not to the parents directly.

Questions to Ask of a Specific Camp

After you’ve narrowed your choices, what do you do next?  Handing over your child to complete strangers for a few days or longer requires lots of trust. Don’t be embarrassed to ask a lot of questions and repeat them until you understand the answers clearly. It is important that you feel as comfortable as possible about the camp and what it offers.

I would pay close attention to how camp staff responds to what you believe your child will need for a good camp experience. Do they listen? Do they treat your concerns with respect? Are they willing to work with you? Although camp staff has their own expertise and experience to offer, you know your child and what it takes to keep them safe and comfortable.

Moving on, according to a great article on camps and children with disabilities on Disaboom.com, basic information and questions to ask include:

• Cost  Is it free (many are), is it on a sliding scale according to the parent’s income, or can the state help pay the camp’s fees? Look at all of your options. Special-needs camps try their best to make sure their camping experience is an option for any family, regardless of their income.
• Do they have a specific camping session tailored to cerebral palsy? Many camps have a wide variety of “specialized” weeks all summer, covering all the disability bases. It’s going to be a much better camping experience for your child if the session he or she attends has staff members well prepared to handle their specific disability.
• What age groups do they cluster together, and what session is your child eligible for according to his or her age? Most special-needs summer camps split up the sessions as follows: 6- to 13-year-olds, and then 14- to17-year-olds. The smaller the gap in ages clustered together, the more finely tuned your child’s camping xperience will be.
• What’s the on-site medical care and caregiver situation like? Most camps have dozens of caregivers and five or six (depending on how many campers are in each cabin) are then assigned to each cabin. Most of these caregivers are college students who are studying for some sort of medical degree and can be a lot of fun for the kids. And lastly, make sure they have either an RN or MD on-site 24/7. Many of the special-needs summer camps are miles away from hospitals or clinics.
• What about transportation? Many camps even go as far as providing round-trip accessible transportation for your child (the pick-up point usually being at a nearby disability rehab center). This service makes it easier on the parents, and also gives your child an additional opportunity to connect with the other kids attending camp.
  
  
  

Is Your Child Ready?

Every child matures at a different rate. This is no different for a special needs child.  Pushing an unwilling child to go to camp is never a good idea. Ask yourself these questions to determine whether or not your child is ready for camp:

• Has he/she been away from you before and how has that gone? Day camps offer a good “training experience” for overnight camp.
• Can he/she be soothed or comforted by people other than family members?
• In what ways does my child need to be prepared for the camp experience, for example, sleeping in a different type of bed?

Last but not least, if you are feeling anxious about the whole camp thing, try not to communicate that to your child. Children are sponges when it comes to soaking up signs of stress from their parents, so stay calm and confident. Going away to camp – even if it’s just across town – could be the best thing that ever happened to your child.

The Cerebral Palsy Family Network provides more information about cerebral palsy and interaction among parents of children with cerebral palsy on its Facebook page.