Navigating the Road Ahead

Through advances in research, treatment and understanding of CdLS, our children are often living longer and fuller lives than ever before. As an example; 50% of the families the CdLS Foundation (USA) serve have a son or daughter who is age 14 and older.

We understand that adolescence and adulthood are times of major change for you and your child —what we call “transitioning.” In fact, your child and family have already have gone through many transitions over the years, from early intervention, pre-school, school and then now on to adult life. This also is a time of change for you as a parent. Your role transitions from being your young child’s provider and manager to one of supervisor or counselor to your adult son or daughter.

Our goal is to help you jumpstart the planning process for transitioning from adolescence into adulthood. It’s for everyone—whether you’re just starting out or you’re well on your way to helping your child develop independence as an adult.

We will give you an overview of the challenges and opportunities to consider as you move forward. It includes information about useful tools and resources that will help you plan for tomorrow. You’ll also read from parents just like you who share their experiences, triumphs and insights they’ve gained from helping their children transition from child to teen and teen to adult.

We Listen to You

To better understand how we can best support you as your child reaches these important milestones, the Foundation (USA) has emailed a survey to parents/guardians of individuals with CdLS who are age 14 or older.

We gained many valuable insights from this survey, including learning that over 85% of parents/guardians that responded reported that it is “extremely important” or “highly important” that there is support to individuals and families as they transition into adulthood. Survey respondents also had the opportunity to tell us about challenges they face as their child becomes a teenager or adult:

Services completely change as our kids transition into adulthood. I felt like I was starting all over again as I did when my daughter was an infant/toddler.

Click here to review all the results from this important survey

What You Told us About Your Needs in the Survey

Help us figure out how to have an adult child become as independent as possible to survive beyond their parents passing and live a full life.

Guidance on steps required to apply for guardianship, social security, medical assistance.

Provide easy access guidance on what to possibly expect medically and provide webinars regarding aging topics, such as changes in personality and moods as (our children) age, health issues that statistically arise and at what age.

Knowing you are there with information is a huge relief. Being a storehouse of good, up-to-date information would be #1.

85% of parents/guardians that responded reported that it is “extremely important” or “highly important” that the there is support to individuals and families as they transition into adulthood.

A Great Journey Begins with Good Planning

We understand that parents in our CdLS community are in different stages of life and planning. The good news is, it’s never too early — or late — to begin!

While it may sound a bit intimidating at first, planning for your child’s future is key to reaching precious goals and dreams for a fulfilled life. Good planning gives you all-important peace of mind. It also gives your family a valuable roadmap that can be amended and adjusted over time. And please remember, you’re not alone! Hundreds of families are dealing with many of the same struggles and issues you’re experiencing — and many of them have discovered effective ways to support their maturing child that they can share with you. 

We will collect as many stories as possible and help you to find other families that can become part of your circle of support. 

We provide a library of publications from the comprehensive, 60-page 'A Guide to Adult Transition.

If you want a comprehensive booklet you can get your free copy of this guide just by contacting anyone in Family Service of CdLS Foundation USA. This Guide provides in-depth information on what we call the “six core areas” to prepare your child to successfully transition into the adult world. 

But you can study these and more on this website.

CdLS Foundation USA
CdLS Foundation USA


You and your family are transitioning into a new phase of life — and so are we. All of us at the CdLS Foundation are absolutely committed to helping you, your transitioning child and family have the best life possible.

Page history
Last modified by Gerritjan Koekkoek on 2021/12/08 11:18
Created by Gerritjan Koekkoek on 2021/04/22 11:16



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