The path forward...

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

La grande majorité des personnes diagnostiquées avec le CdLS ont un retard intellectuel dont le degré varie de léger à sévère. Des difficultés d'apprentissage et de graves retards de langage sont souvent présents.

Bien que cela soit relativement rare, il existe des personnes atteintes du CdLS dont les fonctions cognitives sont à la limite de la normale ou dans la moyenne basse.

La petite taille du corps et  de la tête sont  caractéristiques. Le visage est caractérisé par des sourcils qui se rejoignent au milieu, de longs cils, un nez court et retroussé et des lèvres minces et retroussées.

Le reflux gastro-œsophagien est fréquent. Parmi les autres problèmes médicaux possibles, citons les malformations cardiaques, les crises d'épilepsie, les difficultés d'alimentation, les problèmes de vision et d'audition. Des anomalies au niveau des membres - y compris l'absence de bras, d'avant-bras ou de doigts - sont observées chez environ un quart des personnes atteintes du CDLS.

Il existe souvent des troubles du comportement, de la communication et des capacités intellectuelles. Les personnes les plus légèrement atteintes peuvent n'avoir besoin que d'une assistance minimale de la part de leur famille et des organismes publics, tandis que les personnes plus gravement atteintes auront probablement besoin d'une assistance pour certaines ou toutes les tâches de la vie quotidienne, ainsi que d’un travail adapté ou un accompagnement dans un établissement spécialisé.Les personnes atteintes du syndrome de Cornelia de Lange ont souvent des troubles de la parole et du langage qui rendent leur communication difficile. Elles bénéficient souvent d'un soutien visuel pour les aider à comprendre et à s'exprimer. De nombreuses personnes atteintes du CDLS ont des difficultés à traiter certaines stimulations sensorielles et peuvent trouver certains bruits ou contacts dérangeants. Elles peuvent également rechercher d'autres stimuli sensoriels, comme si elles en avaient besoin.

Certaines personnes atteintes du CdLS peuvent avoir des difficultés à moduler leurs émotions et peuvent être très contrariées par des facteurs déclenchants relativement mineurs. En outre, elles peuvent avoir besoin de plus de temps pour se remettre d'une contrariété.

Un pourcentage significatif de personnes atteintes du CdLS sont également diagnostiquées comme souffrant de troubles du spectre autistique. Dans ce cas, un professionnel spécialisé dans l'autisme fait partie intégrante de l'équipe thérapeutique.

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