Living with JS

The faith to believe, the hope to dream, the love to see it through.  The motto of the Joubert Syndrome and Related Disorders foundation reigns true in the lives of families affected by Joubert Syndrome everyday.  The resources here are provided to give families not only the knowledge that they need to care for their loved one and educate physicians but, also to give them the faith, hope and love in their day to day lives.

Birth to Toddler

Some receive a diagnosis during pregnancy or right after birth.  This can be a stressful and scary time.   The resources below are provided to help answer some of the questions that come up in the first months and years after a diagnosis.  My child has Joubert Syndrome…now what?  What does the diagnosis mean for your child and what steps should be taken to ensure your child is being seen by the appropriate doctors and therapists as early as possible?

 

Spotlight

One of the most important things to learn about a child or anyone who has a disability, is that no matter what disability they have, they are always more similar to others then they are different. It does not define who they are.

Collen Tomko, Newsletter Editor, Parent to Parent Pennsylvania

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Transition to School

Beginning the journey of school is both exciting and scary, especially for the parents!  This may be the first time you will be away from your little one.  You want your kid to succeed, but you don’t want them to be too overwhelmed to enjoy being at school. Depending on how your child is meeting their milestones, the number of staff involved for academic success can vary from just a couple extra individuals to a team of over 10.  Building long standing relationships with these academic team members is important for the overall success of your child’s academic future.  The information below will not only provide you with the resources to manage this new world with your child’s academic teams, but also provide you with the tools you need as a parent to manage the emotional roller coaster of transitioning to school.

Spotlight

“Stay committed to your decisions; but stay flexible in your approach.”

Tony Robbins

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Teen Years

Ah, yes, the teen years. Those magical times ‘twixt toddlerhood and adulthood. Wait, magical? Maybe, maybe not.  The teenage years often represent times of massive change: physically, emotionally, intellectually, and socially.  For our kids, those changes can be even more dramatic, at once amazing and frightening. In this section, we share tips and tools to help guide you and your teen through the new landscape of their changing world.

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Adult Life

The transition from an all day school setting to a fulfilling, self-directed weekly schedule is a daunting task.  This is happening globally: most parents and young adults with special needs are struggling to navigate the system in their country.  With so many options and unfortunate roadblocks, young adults and their families are coping with daily personal care; housing; meaningful activities and building a community of support. You are not alone in this! Please use the resources below to help guide you.

Spotlight

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Bereavement

Coming Soon

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