The path forward...

GROWING UP Transition

See the growing-up Transition page(s). Learn about the seven core areas of transition. The seven core areas are preparation, CdLS, education, socialization, medical options, legal issues, and living arrangements. Gain insight from other parents who have already gone through the process. Find the resources that can help you and your family prepare for your loved one with CdLS becoming an adult.

The period in your life where you go into Adolescence and finally reach adulthood is the period of what we call “transitioning”.
Your loved one is certainly changing but this is also a time of change for you as a family.

Your role transitions from being your young child’s carer to one of supervisor/counselor to your adult son or daughter.
This website provides you with information and you also can find support in your national communities in theses six key areas to get a happy and fulfilling life.

The seven Core Areas of Transition

Where do I start??

is what parents often wonder when their child with CdLS reaches the age of 10 years....

During the transition, there are many changes. Not every child with CdLS will reach the same level of independence. You, as a parent, will also change during the transition. You are not going to "let go" of your child, you are going to "hold them differently".

When you ask parents what they want for their child after school, parents often say: A life as normal as possible.... A life with paid work or voluntary work, spending time with friends and a safe, long and happy life.

Through this information, available on this website, we want to prepare you for what you will face. There is a lot to do; we list it for you in the sections presented below...

It is important that you include your family in this process and take it one step at a time. Know that support is available, we will try to get you to know important organisations that can help; do you want to be in the driving seat or do you prefer someone to take the lead and take you along...

Good luck

The vast majority of individuals diagnosed with CdLS are intellectually delayed with the degree ranging from mild to severe. Learning disabilities and severe language delays are often present.

Although relatively rare, there are people with CdLS who have borderline to low average cognitive function.

Small stature and small head size are characteristics. Typical facial features include eyebrows that meet in the middle, long eyelashes, a short-upturned nose and thin downturned lips.

Gastroesophageal reflux disease is common. Other possible medical issues include heart defects, seizures, feeding difficulties, vision problems, and hearing loss. Limb differences — including missing arms, forearms or fingers — occur in about a quarter of individuals with CdLS.

Behavioral, communication and cognitive challenges often exist. The most mildly affected may only need minimal assistance from family and public agencies, while the more  severely affected will likely require assistance with some or all tasks of daily living, as well as supported work or day program environments. Individuals with CdLS frequently have speech and language deficits resulting in difficulty communicating. They often benefit from visual support to help with understanding and expressive communication. Many individuals with CdLS have difficulty processing certain kinds of sensory input and may find certain noises or touches disturbing. They may also seek out other sensory input, appearing to crave it.

Some people with CdLS may have difficulty modulating their emotions and get very upset with relatively small triggers. Additionally, they may need extra time to recover once upset.

A significant percentage of people with CdLS are also diagnosed with autism spectrum disorders. In that case, a professional with autism expertise is an integral part of the therapy team.

Every person with CdLS is unique, so it’s essential that you first consider your child’s specific needs/challenges and, particularly, their goals and dreams for the future when mapping out an educational plan. If this sounds a bit intimidating, you’re not alone. Most parents and guardians are at a loss for how to make these plans happen.

Once your child is in high school, it’s important to be aware that there is a specific timetable of important milestones to be accomplished at specific ages. Here are just a few of them, at age 14 or entering high school, create a Transition Plan and review this every year with your child’s school; look at graduation options since graduation can vary by country/state from 18-22 years of age; identify and explore areas of interest to your child that can help guide what life after high school can be; and research other options open to you by contacting Adult Services Programs in your area.

What happens after high school? There are many options out there, some you may have never heard of, so look online, do some research, talk with other parents and reach out to Family Service and/or your IEP team. There are lots of post-secondary options now, including life skills “colleges” and assisted living for differently-abled young adults. Start planning early since many of these places have long waiting lists.

Access additional informative articles on education here

No one knows your child as well as you do. You’ve learned what they enjoy, their challenges, their interests and how to engage them in various activities. Discuss these early with potential places and peple involved in the transition and find out what social opportunities they provide, such as a Best Buddies Program.

Or, tap into local special needs groups for social activity options including Special Olympics, local programs such as dance studios, music lessons, various sports and art studios that often offer classes specifically designed for people with disabilities.

Another good option is connecting with other parents who have children with special needs who may know of other opportunities for social participation, such as horseback riding, swim classes, etc. Be aware that these may be supported by a state waiver program or other government services.

In addition, be aware that if your child is receiving any government services, there is a case worker assigned to your child and this person can be a great help planning for your child’s future.

The transition from pediatric to adult healthcare is a critical stage of life for everyone involved. This time period can present many challenges that can drastically change the daily life of both a young adult and their family. As a result, the transition period may be an especially stressful time. As a parent or caregiver, it is important to consider using all available tools and resources to make the transition successful and to minimize potential stress.

This medical part of your plan is to maximize your child’s lifelong functioning and potential by coordinating high quality, developmentally appropriate healthcare services. It’s critical that these all-important healthcare services remain uninterrupted as the individual moves from adolescence to adulthood.

Here are a few steps to a seamless transition:

  1. Between ages 12 and 14, ask your pediatrician about the office transition policy
  2. Initiate a jointly developed a Healthcare Transition Plan
  3. Be aware of puberty and sexuality during this period
  4. Review and update the Healthcare Transition Plan as needed
  5. Implement an Adult Healthcare Model by creating a Portable Medical Summary

Read articles about transition from pediatric to adult healthcare

Just as you would do for a typical child, as your son or daughter with CdLS moves into adulthood, it’s a natural time to consider a more independent lifestyle for him or her. And this may involve living at home with greater independence or moving away from home and living more on their own. The goal is to have your child be in a happy, appropriate and safe environment for their level of functioning, one that you as a family feel comfortable with.

A few examples of different types of living arrangements include:

  • Living with parents or family members
  • Group homes/ supportive housing
  • Assisted living facilities/ skilled nursing facilities
  • Trust ownership of a home/ beneficiary
  • Independent Living
So how do you select the right living option for your loved one?
Do your research and get involved with your community. If you’re able, do this while your child is young. Get familiar with your community so that you can see what options are available in your area as far as living arrangements. Also, take time to see what other families with children similar to yours have done.

Consider all your options and make a plan with your family about the future. It may be hard to think about, but planning for where your child will live when you’re older is an important step in caring for them and their future.
Decide which type of living arrangement is best for your child’s level of functioning and their daily needs. Start the process toward finding a place nearby so you can easily visit your child and still be a large part of her/his life.

Look into what insurance will cover and plan the payment of the living arrangement. A lot of this payment may be covered depending on the state you live in.

Make a decision for your family and move your child into their new living environment. Or, if your child is remaining at home, decide what other aspects of their lifestyle can be altered to provide them with more independence under your roof.

Read more about Living Arrangements

Before your child reaches the age of 18, establishing a legal guardianship is often necessary so family members can continue to have a vote in decisions on essential matters including medical care or where the individual with CdLS will reside. If guardianship isn’t already in place by age 18 and your child needs medical/government supports, etc., they will likely be asked to prove they have a guardian. If you can’t provide the right paperwork, you may not have any say or be able to implement services/supports.

At the age of maturity, other legal issues typically arise such as whether the adult child with CdLS will continue to be covered under parents’ medical plans. In addition, various benefits and Social Security Insurance may become available to the adult child at this time (different for each country). Many decisions have to be made at this juncture, so establishing a guardianship for your adult child is extremely important.

During this legal proceeding, someone (usually a family member) asks the court to determine that a person is unable to manage his or her affairs effectively because of a disability. A guardian steps into the shoes of the person with a disability and makes the decisions for them.

There are a number of different types of guardianships and laws that govern them, and these can vary from country/state to country/state. Prior to seeking guardianship in your country, be sure to check the applicable laws and/or consult with an attorney specializing in guardianship issues

Read more about Legal Issues and Guardianship

Learned by experience...

Additional Resources to support you in growing up...

Contact your national supportgoup for more resources that can help with transition!

Find other pages that share the same topic as this page Planning for best quality of life12 Planning for best quality of life3
Bonnie Royster

The Cornelia de Lange Syndrome (CdLS) Foundation (USA) provides a host of services for anyone touched by this little-known genetic syndrome and other isolating conditions. Learn more about us, visit

Page history
Last modified by Gerritjan Koekkoek on 2022/11/10 00:19
Created by Gerritjan Koekkoek on 2022/09/15 14:05
translated by Gerritjan Koekkoek



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