Advice for parents who are new to the world of disability

So your child was just diagnosed with a disability. You’ve never raised a child with a disability before, and it’s not like you see a ton of examples everywhere. Although visibility is improving, you don’t often see successful people with disabilities working in many jobs, and you don’t have a bunch examples in media of successful people with disabilities.

You may have questions like, “What’s their life going to look like?” “How are we going to make this work?” “Is my child going to have friends?” and “How hard is this going to be on our family?” It’s totally normal to have all these questions, as well as grief and anxiety about the future.

Luckily, the world of disability can be a wonderful place and there are many ways you are supported. Below, read the top 5 things every parent who is new to the world of disability should know.

And, if you happen to be a parent who’s been in this world a long time, please leave a comment down below with what advice you have for new parents. Thanks!

1. It’s okay to grieve

I once had a family tell me they felt guilty for grieving when they discovered their child had significant disabilities. They’re a very active and fit family and their child wouldn’t be able to do everything with them that they had dreamed of. There would have to be sacrifices. They felt guilty they were grieving while their child was having to go through so much.

But all human beings dream of a bright future, especially for their children, and grieve when those expectations are shattered. If you try to ignore those feelings for your child’s sake, it will catch up with you eventually. You will be a much better parent to your child if you face these feelings. Doing this can also provide a great example to your child of how to develop resilience. So allow yourself to feel your feelings fully. Counselors, support groups, religious leaders, and sometimes even friends and family can be great shoulders to lean on at this time.

2. You are not alone

You may feel isolated right now, like you’re the only family in the world going through this experience, but you’re not! So many parents are going through the same thing as you right now. And even more parents have been where you are and can support you immensely. It’s a huge community. So go find your tribe. Join facebook groups, join support groups, talk with other parents at the hospital or doctor’s office or therapy clinic, and check out Parent to Parent.

3. Your child’s not alone either

Did you know that 20% of the US population is disabled? That’s larger than any single racial minority in the US. The truth is, there is a thriving and growing disability community. You can help your child meet other kids with disabilities through your local community center, camps, Special Olympics, and diagnosis specific organizations.

While people with disabilities may not be well represented in mass media (although that is improving every day) there are tons of disabled actors, models, authors, musicians, artists, influencers, and speakers. With a little bit of research, you can find some successful people with disabilities similar to your child’s. It’s very powerful for children to see someone like them accomplishing great things in life.

4. Learn from people with disabilities

All of those actors, authors, etc. with disabilities I just mentioned? They are a great resource to learn from. While you might initially think to run to your child’s doctors or other parents as the experts on all things disability, you might be surprised what you learn from people with disabilities themselves. Doctors can be a great resource for discussing medications, surgeries, and treatments, and parents can be great for giving parenting advice, recommending resources, and providing emotional support. But people with disabilities have had to fight for many of the rights your child can enjoy today, they have strong opinions on topics that many parents and doctors have never heard of, and they understand the lived experience of having a disability. So follow people with disabilities online, watch their shows and movies, listen to their podcasts, and read their books. You might find the most valuable lessons you learn come from the true experts on disability.

5. There are a plethora of resources out there

While you may have to search to find the right resources for your child and family, there are a lot out there: early intervention, behavioral services, sleep counseling, caregiving services, financial resources, job training, housing resources, legal support, school advocates, the list goes on. A good case manager or social worker can help you find many of these resources, but a lot of them only require a quick google search! One of my first stops when searching for resources is The Arc, as their local chapters are fantastic at putting together lists of resources.

Finally, no list for parents new to the world of disability can be complete without this guide from the Ed Wiley Autism Acceptance Lending Library.

So welcome to the world of disability, it’s a great place. I love it! You and your child can both truly live wonderful lives here.

If you’re a parent who’s experienced in the world of raising a child with a disability, what do you wish you had known at the beginning? What advice would you give to yourself? Please write your advice in the comments below so new parents can benefit from your wisdom.

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