Awareness for the natural part of the human experience we label ‘disability’

March is National Developmental Disabilities Awareness Month. 

The CDC defines developmental disabilities as “a group of conditions due to an impairment in physical, learning, language, or behavior areas. These conditions begin during the developmental period, may impact day-to-day functioning, and usually last throughout a person’s lifetime.”

Thanks to a federal law signed in 1963 by President John F. Kennedy, which is now known as the “Developmental Disabilities Assistance and Bill of Rights Act of 2000,’’ children and adults with developmental disabilities have access to programs and support to assist them in living as independently as possible.

I LOVE this quote from the law:

“disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society.” (Public Law 106–402 ;SEC. 101. FINDINGS, PURPOSES, AND POLICY a.1.)

This federal law recognized that children and adults with disabilities are human beings with hopes and dreams who need support to fulfill their life purposes. They aren’t broken humans who need to be fixed or hidden away somewhere. 

The law also mandated that every state have organizations to help support the particular needs of people with developmental disabilities. The programs receive federal and state funding to serve individuals with developmental disabilities. 

It can take years to qualify for these programs and quite honestly, it’s a daunting task for families. We need the help — but acknowledging that your kid is not going to outgrow these problems can appear to be a negative perspective on a child’s future. We are the parents and family members who hang onto the friendly advice of others who assure us that our kids are just “late bloomers” or whose medical problems will magically disappear when they get older — if they get older.  That’s where special education and hospital social workers and providers can really help families plug into services.

Jo was delayed at every milestone in development except her speech and we started early intervention, a program for infants and young children providing related services of physical therapy, occupational therapy, speech and special education when she was just six months old. 

I remember the very first physical therapist who came to work with Jo in our home. Jo’s siblings were 9, 6 and 3 years old at the time and they thought these play visits were so much fun. The PT was a wonderful professional and a mom of twins with special needs. She understood what we were going through from professional and personal experience. She was the first mom I met who really understood the shock and exhaustion I was experiencing in the first year of Johanna’s life.

The PT spoke kindly and told me that if Johanna was my first baby with all these developmental delays and medical problems, she would be more concerned for her ability to adjust and grow. She told me that precisely because Jo was our fourth child and surrounded by the hustle and bustle of a busy family life with three older siblings, Jo would reach even greater potentials as would her siblings who were learning to love and care for their little sister at such young ages. 

That professional mom gave me a foundation of hope that I have been building on for the last 25 years and I am forever grateful.

It’s near-impossible to raise children with developmental disabilities without the support of family, friends and social services. But oftentimes families are just too tired to get the help they need. When Jo was 10, it  was a speech therapist working with her who helped me get Jo evaluated and qualified for the programs she needed. These programs formed the base of support that followed Jo into adulthood and made the transition into adult programs a lot easier because we had already identified needs.

It took over two years to get into a waiver program and have Jo identified as developmentally disabled, especially because her needs were complex. I can laugh now, but one of Jo’s early neuro-psych evaluations caused greater delays because the psychologist said the low IQ score “wasn’t applicable” because Jo showed higher social and cognitive skills primarily because she was chatty and had a sense a humor. 

To this day, Jo can intuitively read a room, find something funny about a situation, and drop one-liners that will keep us laughing for years to come. She has a very dry wit and it gets her into trouble when she’s being evaluated for services that she really needs.

It’s a daunting task for parents to navigate these services. It also goes against our nature to label our kids and we fear it will stay with them and impede them for life. 

Still, I want to say to you — parents of kids with developmental delays, who are trying to do everything on your own — get the help you and your child need early. It may be, that they outgrow the services they qualify for now. If they don’t, then you have started laying a foundation of support for their life and for your family.

Raising kids with disablities is not a sprint- it’s a marathon. Take all the help you can get because at one time or another, you will need it and you will be glad for the support. Check out these links for more help accessing programs in New York State. 

The pandemic has uncovered areas for people with disabilities that need more support. Direct support professionals are some of the people who work in this area assisting people with cognitive and physical disabilities. 

As I’ve been saying for the past two years, they are the unsung heroes of the pandemic who continued to work in a high-risk environment with little fanfare and support. They need a higher wage, more training and support to help keep our loved ones safe. 

The pandemic also forced us to get creative in supporting Jo’s needs and providing her with more opportunities at home. Two years into our backyard farm adventure of raising chickens and goats, we are now hosting “Arts on Jo’s Farm” events and building a non-profit dedicated to providing opportunities for people with developmental disabilities to explore nature and create art. 

We invited some friends to join Jo on this adventure and it’s been a blessing to all of us. Spending the last nine months on Jo’s Farm with other young adults with cognitive disabilities, I have learned a lot. Their ages range from 25 to 40. But they are all young at heart. 

Everyone comes with support staff to help them with their special needs. I organize and run the programs we create, making sure Jo has someone else attending to her needs. But I have learned that I don’t have to fill up their time with activities. These young adults want time to laugh and share stories with each other. They love to hang out with each other, feeding the goats and collecting eggs from Jo’s chickens. We’ve now celebrated three seasons together and are looking forward to the coming of spring. Next time we meet, our friends will visit with the baby goats that will soon to be added to Jo’s Farm. 

Some of our friends live in group homes, some live with families and at least one young woman lives in apartment with some physical support. I’ve learned to listen better by watching the way they interact with each other with interest and empathy.  They usually don’t interrupt each other — maybe because they know how it feels to be interrupted and have people finish the sentences they are trying so hard to complete.  

There are two weeks left to National Developmental Disabilities Awareness Month, but we all have a lifetime to get to know people with disabilities. These adults live in our families, neighborhoods and communities. They work in the stores where we shop and in specialized programs nearby. Just like everyone else, people with developmental disabilities have hopes and dreams, joys and sorrows. They need our respect, our compassion, support and our friendship. 

 And we need them too — to teach us how to slow down and to grow in kindness, to listen to our neighbors and to reach out of our comfort zone to lend a helping hand.