Inclusion: Lifelong Choices Each Family Should Consider
To be honest, "inclusion" was always a sensitive word for us. Sure, as new parents of a beautiful daughter with Down syndrome, we had ambitious dreams for Gwendolyn. We wanted her to be happy and do as much as possible. This was reinforced when her younger siblings came along, providing strong role models for Gwendolyn and a lens into independent adulthood for all our kids.
School Inclusion: For Better or For Worse
I remember when Gwendolyn was around six and ready to go to kindergarten. The buzz around our local Down syndrome association (DSA) was "inclusion at all cost." We should be prepared to fight to have our daughter in all mainstream academic classes with the necessary tools and assistance. Anything short of that would be detrimental to Gwendolyn's development and a failure as parents. What a heavy weight to bear!
Nevertheless, we prepared our points, consulted with others at our DSA, and went to battle at Gwendolyn's first ARD (Admission, Review, and Dismissal) meeting. I'm sure the administrators and teachers saw us coming as we fumbled through notes and words to plead our case. Somewhat surprisingly, we succeeded in getting her into the mainstream kindergarten class. The rest of the meeting was less tense as we populated her IEP (Individual Education Program) plan with step-by-step goals. We walked away from the meeting proud of our accomplishments and optimistic for Gwendolyn's development.
However, reality set in a couple of months later. Gwendolyn was spending about half her day in the special needs classes to address her life skills goals and then a buddy would walk her to the mainstream class three times a day for a dose of inclusion. We had visited that classroom a number of times and realized Gwendolyn was off to the side, coloring or playing with puzzle pieces by herself as more academic concepts were presented to the other students. We shared our frustration with the teacher who remarked that they had tried to involve her but to no avail. We challenged the earnestness of their attempts and encouraged the administrators to work their magic, yet further feedback and visits were not fruitful.
My wife and I needed to step back and ponder the situation. What were our goals and expectations for Gwendolyn? This can be a humbling question. No one wants to give up or establish perceived limitations for any of our children. We've learned never to underestimate her drive or abilities, but a dose of realism can be healthy as well. Our hope for Gwendolyn was that she would talk, read, and write, develop relationships and form caring and loving bonds, actively engage in pleasing hobbies, and have the ability to work. We hadn't yet thought about independent living but that would be added to the list later.
With this in mind, we felt it was most important for Gwendolyn to learn these skills starting in kindergarten. Clearly, that was not going to happen in her mainstream kindergarten class. The teacher was not trained or inclined to provide that for Gwendolyn and realistically, that was not the class to address most of our priorities. Furthermore, the environment was far from inclusive with Gwendolyn secluded to the side. She could still benefit from inclusion in school activities, hobbies, playgroups, and with her siblings at home.
What Is Best For Your Family?
We can certainly acknowledge that everyone's experience is different. Our turn of the millennium experience could certainly be different twenty-plus years later. Many families find very inclusive environments in school and/or they force that through the aid of assistants and dogged oversight. So there are many very positive and uplifting stories of school-aged inclusion but I'm sure there is an equal number similar to ours.
So we decided to remove Gwendolyn from the mainstream kindergarten class and focus our energies on our priorities for her. Over the years, she developed personal hygiene skills, she is a solid reader, her writing and penmanship are excellent, and her communication and relationship skills are good and still evolving.
She has benefited from her younger sibling role models tremendously, as well as her exposure to gymnastics, horseback riding, swimming, biking, and world traveling. She loves her music and is quite comfortable surfing the internet to research her favorite artists. She is an ardent calendar follower which helps her maintain her routines and prepare for those exceptions that lie ahead. She has worked part-time and loves the camaraderie and pride of accomplishment. She rides her bike alone and with friends and she advocates for herself and her personal independence. We are so proud of her!
I certainly support those parents that push the system. Perhaps opportunities in the school systems are greater now and maybe if we had pushed further we could have achieved a truly inclusive academic experience for Gwendolyn.
But I'd say Gwendolyn has done a pretty awesome job!
I encourage other parents to learn about options, consider family goals, advocate where they truly believe it is important and will make a positive difference, and strive to create growth opportunities for their loved ones through school, hobbies, and at home.
While we are on the subject of inclusion, many also have staunch views of community inclusion. Where will my adult with Down syndrome live and work? Will they be in a day program only for those with intellectual and developmental disabilities (ID/D)? Will they live at home or in a specialized residential living community, or within the community at large? How will they integrate with the general public? How can they learn and make a difference with others?
These are all important questions to consider with your own self-advocate. What do they want? What will promote their personal growth, positive relationships, and pride and confidence?
Through such probing conversations, you may identify what are their true priorities and what may be your own dreams which you may be trying to impose upon them. For Gwendolyn, she treasures the relationships with her peers that have ID/D but she also loves to converse with others. She now lives in a fabulous residential living community with hundreds of other adults with ID/D. She has worked in food prep with the opportunity to converse with co-workers and the public. Gwendolyn also loves to spend time with family at home and through travels, sharing her accomplishments with aunts and uncles and fielding questions from cousins. We all believe she has struck the right balance for Gwendolyn. Your family's goals and the right balance for your loved one may be different. How can you help make THEIR ambitions come true?
The Down Syndrome Community
Finally, I want to share some thoughts regarding inclusion within the Down syndrome community itself. I really never paid much attention to this subject before I began work on The UPLifting Guidebook Project. But this project has given me the great fortune to meet many amazing families around the world. I've gotten to hear their stories, struggles, and successes. I've realized the Down syndrome community is indeed a broad spectrum of abilities and dreams.
Even within our own community, we are often disconnected and far from inclusive, despite our global need for sharing, learning, supporting, and advocating together. Through my discussions, I've met families that feel they are excluded from most social events, learning topics, or resource allocations through local or national Down syndrome organizations because their self-advocate is non-verbal, overweight, or dual diagnosis with autism. Yes, these conditions may require further attention and have unique challenges, but don't we all have our unique challenges...and strengths and beauty?
Did you know that 25-40% of adults with Down syndrome are also diagnosed with autism? I had no idea. These families met the challenge of an at/near birth diagnosis of Down syndrome and all the heartache and joy that comes along with that, only to notice other unique physical or behavioral traits that surfaced during childhood, resulting in their autism diagnosis often between the ages of 5-10 years old. I think we can all envision how overwhelming that could be! Yet, nearly every family with a dual diagnosis indicated they felt alone. They no longer felt welcomed into the Down syndrome community given the behavioral differences, nor into the autism community given their obvious physical traits. And the families also recognized that their issues were not additive - Down syndrome plus autism challenges - but in some ways exponential because the combination presented unique physical and mental health obstacles which could make accomplishing tasks that parents of children with Down syndrome see as routine nearly impossible for those with autism as well.
And what do we need during moments of crisis more than anything? Understanding, ideas, support, and helpful resources from our COMMUNITY.
Let us all use this as an opportunity to be inclusive first within the broad definition of our Down syndrome community and also within the community as a whole so that our own self-advocates can achieve the goals and dreams they themselves establish.
All the best,
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