A man with cerebral palsy wearing a grey t-shirt is using a Kaye walker while looking at a long black informational panel.
Many parents look for childcare and preschool programs with several goals in mind. You may require childcare in order to return to work, to have a break from caregiving responsibilities and to support your child’s social, emotional and intellectual growth. Many parents are also eager for their child to have an opportunity to interact with and learn alongside other children.

Go to Preparing for College

The childcare or education setting you choose depends on your practical and personal considerations that are unique to your family and child’s needs. Under the Individuals with Disabilities Education Act (IDEA), a law that makes available a free appropriate public education to eligible children with disabilities, access to school-based services begins at age three.

Before this time, you may have access to Early Intervention Services to support your child’s development. It is critical for parents of children with extra needs to have access to as many resources as possible. You may reach out to a local parent to parent organization to find out about programs in your area.

In the following section we provide information about choosing a school for your child. You will find additional resources for finding childcare in our resources below:

  1. Choosing a School for your Child

The school you choose will define your child’s experience of learning, friendships, and teachers. It is important to make the right decision for you.

But, where should you start?

  1. What to Consider in a School

First, think of the things that are important to your family. What are your family values?  If independence and creativity are important to you as a family, be sure to look for a place that values those things as well.

Finding a school that is in alignment with your family’s belief system will help you to know that your kids are getting the experience you want them to have. It will also make communication consistent to your children regarding values and behavior expectations, what they learn at school, they also learn at home.

The process of choosing a school should include:

  1. Taking a school tour
  2. Interviews with the educators and head of the school
  3. Discussions with other parents
  4. A mutual decision between the family and the school that it seems like a good fit.
  1. What Does a Good Fit Look Like?  

The values of the school should match that of the family. But also, the school should be able to provide the accessibility or adaptations necessary to allow for full participation in the school’s curriculum and activities.

Special education is no longer a place, it is the creation of support within the school, it is the defining of what services, accommodations, or adaptations need to be made to make school inclusive for everyone. You are looking for a school that values every student’s capabilities and contribution to the community, not one with a special education room.

In many areas and many schools, when you ask for this, they may say that it is not possible, or that your student is not capable of learning as much, as fast, or as well as their peers.  As a parent you have likely heard for many years about all of the things your child cannot or will not do, as fast, as well, or ever, like their peers.

Look at your child’s strengths, look at their capabilities, and fight for their school to take an approach of assumed competence. We must assume that students are learning and understanding, until we have a consistent and reliable way for a student to tell us otherwise.

When I was a child special education was a place, with a plaque on a door that was always closed.  Students in special education didn’t mingle with students in the rest of the school.  How can we live in a world together, with mutual respect, when we are raised separately?”
Tanya Sheckley – Founder, UP Academy

 

  1. Accommodations and accessibility

Under the IDEA (The Individuals with Disabilities and Education Act) children have access to public special education services outside of the home (drop-off programs) beginning at age three. Before this time you may have access to Early Intervention services which include home-based evaluations and therapies for your child.

Once you have established that a school matches your values and ideals about education and you have a staff that values the capabilities of every student, especially yours, it is time to talk about actual accommodations and accessibility.

You will want to lay out the plan for education. Often this is done in an IEP meeting.  It defines who will create accessible material, what supports or therapies will be offered and when, what the landscape of the classroom will look like, what movement and learning will look like in the classroom, and what the expectations for growth, physically and academically will be.  Here you want to look for understanding, creativity and flexibility from the school. You must also be prepared to be creative and flexible for your student.

As you are seeking the right school, aligning values, talking with educators, and determining the openness and flexibility of the school, you also want to ask your child what they think is the right thing to do.

This is especially important as your child gets older, but from a young age, children can intuitively feel the best places to be and they understand these decisions.  You may not make the same decision your child would like, but involving them in the process gives them a sense of agency, self-assurance, and trust that if things go wrong, or right, you will listen to them.

While this is a major decision in your child’s life, remember, if you make the wrong one, you can always change your mind.

Contributed by Tanya Sheckley—Founder, UP Academy.

When I reflect on the triplets’ journey, I would like to call the educators who didn’t want to invest in their potential. I want them to know that those little preschoolers they thought could place an undue burden on their teachers graduated with honors – lots and lots of honors.””
C. Shrader – Parent of four kids, including triplets, two of whom have CP

 

  1. Things to consider asking a childcare director:
    1. Has your facility ever cared for or had children with a disability/extra needs before?
    2. If so, have any of these children ever had a physical disability?
    3. Do you know or understand what cerebral palsy is?
    4. Is your staff willing or open to learning about how to best care for my child?
    5. Is your facility handicap accessible? Are there any areas that are not accessible?
    6. How closely would you be willing to communicate with me about concerns or issues that may arise with my child?
    7. How do you typically communicate with parents about their children and how often?
    8. Would you allow my child’s therapist/s to visit the facility and offer guidance about how to best support my child here?
    9. Would you allow my child’s therapists to come into the facility and work conduct therapy with my child? **This is very convenient if the facility does not offer on-site therapy and will save you time in the car traveling from one therapy appointment to the next.
    10. Are you nervous about having my child attend here? If so, can we talk about your concerns?

Preparing for College

As our children move from childhood to adulthood, college may be on the agenda. Young people with cerebral palsy face more hurdles than most when it comes to higher education, but there are many ways to help them reach their full potential and achieve greater independence.

A man with cerebral palsy wearing a grey t-shirt is using a Kaye walker while looking at a long black informational panel.Here are some suggestions from a parent who has been through this process with three adult children, two of whom have cerebral palsy:

  1. Let them take the lead

As a parent of a child with CP, you may be very used to being a helicopter parent, but as your child transitions to adulthood, let them take the driving seat. Give them the autonomy to research colleges for themselves, then sit down with them to go through all the options. Consider other mentors who can support your efforts as you launch your child into adulthood. A person outside your family may be skilled in an area of interest to your child or offer mentoring that you can’t. Someone other than a parent may hear your child’s desires with a fresh perspective and help them reach their goals in a new way.

  1. Don’t dismiss college for those with intellectual disabilities

Children with CP who have intellectual disabilities can attend post-secondary programs at various colleges across the country. These programs often come with career training and job placement.

Resources for Preparing for College:

The Model Comprehensive Transition and Post-secondary Programs for Students with Intellectual Disabilities (TPSID) provides grants to higher education institutions to provide high-quality, inclusive model comprehensive transition and post-secondary programs for students with intellectual disabilities.

Visit ThinkCollege.net for a directory of 306 college programs for students with an intellectual disability.

  1. Research, research, research!

As your young person thinks about college, they will need to think about geography and how near or far from home they wish to be. Finding out about the colleges in your area is a great place to begin. Grab a map and narrow down the regions you are interested in.</p>

Resources for Preparing for College:

BigFuture.collegeboard.org is an online resource that allows you to search for colleges in different areas and condense your search via other criteria, including what accessibility colleges have for the differently-abled. It also provides SAT and ACT information.

ThinkCollege.net is another excellent resource for looking at schools and programs.

  1. Opt for in-person college tours

Once you have narrowed down your college dream list, do your best to visit them. Colleges can promise lots of things on paper, but navigating campuses in real life will tell you a lot – especially about physical accessibility. Encourage your child to take the lead in these conversations so they become comfortable in advocating for themselves as adults.

Schedule in time to meet with each college’s Disability Services Office (DSO) and ask them what accommodations they offer. Ask to be introduced to students with disabilities who attend to find out about their experiences.

  1. Look into the range of accommodations

You will want to get detailed information about being a student with a disability from speaking with other students, asking questions of administrators and staff and through your own observations. Have a list prepared of physical accessibility needs and accommodations that will make your child academically successful, and inquire about their protocols for addressing requests for accessibility or accommodations. You want to understand how responsive they have been to other students and how efficiently and thoroughly they will respond to your needs. Here are some sample questions you may consider asking or investigating:

  • What’s the accessibility like for dorms, dining halls, sidewalks, classrooms, and labs?
  • Do the sidewalks have ramps?
  • Do they have signage telling people not to block them?
  • Are there sufficient working elevators?
  • What transportation options do they have?
  • Will they provide scribes for test-taking or a quiet room for testing if needed?
  • What is their track record for inclusion?
  • Do they offer assistive technology?
  • Do they offer accessible campus transportation?
  1. Research ways to help fund college

Paying for college is often a concern for families, but you can find financial help. You could start by googling scholarships specifically for students with disabilities to see what is available. Leave no stone unturned, search online for local opportunities, and read your local paper. Capitalize on what makes your student unique and search for the scholarships offered for that attribute.

Resources for Preparing for College

Next, the U.S. Department of Labor’s website CareerOneStop.org has a database of over 8,000 scholarship, grant, and fellowship opportunities.

FastWeb is another site that matches students with potential scholarships, and Scholarships.com lists over 3.7 million scholarships and grants.

Vocational Rehabilitation scholarships are also available by contacting your state Vocational Rehab office.

  1. Have a plan in place

Throughout their school years, your child should have developed a 504 or Individualized Education Plan (IEP) to list the accommodations they require for academic success. Be sure to keep this updated as they transition to adulthood so that you have a blueprint in place for all the things that your child may need, such as extra space for a wheelchair or scribes to assist with writing.

  1. Think about medical care

Establish medical professionals to meet your child’s healthcare needs as they advance into adulthood. Encourage them to think about what they need and how to get it. Can they set a reminder on their phone to call and ask for prescription medications to be refilled in time?

  1. Discuss with your young person how involved you will be

If something is proving burdensome or untenable for your young person, they need to be able to speak up and ask for what they need. Suppose you decide as a family to stay involved in conversations with the school; you and your child will need to sign forms allowing educators to speak with you. FERPA [Family Educational Rights and Privacy Act] protects student’s educational records, even from parents.

  1. Trust in the process

Most parents worry about their child when they are away from home but allowing them to spread their wings and find their way is one of the best gifts you can bestow upon them. Let them know you are always available to help if needed and encourage them to call you regularly to check-in. Sit back and watch as your young adult child grows in independence, and finds confidence and happiness along the way.

Additional Resources

According to Wrightslaw special education law and advocacy web in college students are no longer eligible for services under the Individuals with Disabilities Education Act. Although college students with disabilities are protected from discrimination under Section 504, some professors are not always responsive to requests for accommodations.

Here are resources about developing self-advocacy skills and making the transition from high school to college:

This section, “Preparing for College”, was created in partnership with parent, blogger, and advocate Carol Shrader.

The information from this page appears in our free and downloadable cerebral palsy tool kit.