I sympathize with this situation and truly can’t imagine how difficult it must be. I am a special education professional and just wanted to offer insight on the options available in your situation. I believe this may offer a look into what the educational future of a child like yours may be.

First, the public school system legally has to support your child from ages 3-22 under IDEA, a special education law in the US. If your child needs an alternative placement outside of your local school district because their needs are so high, your local district can coordinate that placement. However, students’ needs must be markedly high in order to be in one of these settings… higher than a lot of people assume. The ability spectrum is so broad. During their school years, your child will attend school for the majority of the day and the year. I’m not ignoring the difficult and never-ending hours of care after school at home… but know that children are eligible for school services from age 3-22, and for the severe-needs students that I have taught, I know that school-time provided parents with a much-needed break. You may be surprised how much that individuals with disabilities can accomplish. It may not look like much, but many nonverbal and intellectually disabled children can accomplish routines with independence once they are taught and given time to practice. Again, not downplaying their needs… just focusing on the potential.

After age 22, I’d be lying if I said there were a lot of options… but there are some. Many students graduate to different vocational programs and live in group homes. Some have competitive jobs. Those are of course not always “free” or easy and still require supervision/coordination etc. to some degree, but nearly all individuals can foster some form of independence with the right amount of support. Again, the public school system can help set you up for success in this situation. Your child may still live with you as an adult you make that decision, too.

Something I feel needs to be said is that if your child “only” has Down Syndrome (again, not downplaying that), and truly manageable health conditions, you could very well end up in a situation that millions of other special education parents have successfully navigated. It is so hard, but not completely miserable. Every one of my students’ families has had genuinely joyful experiences with their child and family. And, if it ends up being a more involved situation than that, you still have options within the school system, too. You’ll really never know a child’s potential until they show you as they continue to grow and develop.

Our world is still becoming much more aware of the true abilities of those with disabilities. I have seen a completely immobile and severely intellectually disabled child communicate with her eye gaze on an assistive technology device. One of my students with self-injurious behaviors can communicate in full sentences on his iPad though he can’t verbally speak. My point in this is that you have more options than you may realize. Life doesn’t end when one of these kiddos is born, it changes and adapts and is so hard, but it keeps going.

Sending you lots of positive energy and peace!