The Issue
Years ago when I was starting my career in social work, I interviewed for a position in a continuing care center for the elderly. As the director showed me around the wing for those with dementia, she proudly informed me that, “We don’t let our residents have baby dolls or stuffed animals. We are age-appropriate”. “That’s odd”, I thought as I imagined seniors with Cabbage Patch dolls and teddy bears hidden under their beds until staff was gone for the day.
As a parent of a child with significant intellectual disability (ID) and autism spectrum disorder (ASD), I have heard this refrain too. And just as it confused me then, it confuses me now. Let me explain . . .
Early on we had such high hopes that all the therapies and treatments we had on board would mitigate the most challenging aspects of her disability. Many years and interventions later, she continues to have global deficits that a multitude of providers highlight in routine reassessments and check-ups. Her first speech therapist broke my heart when she told us that she was functioning at the level of a toddler and might not progress any further. As painful as that was to hear back then, it has turned out to be accurate in many respects. What she pointed out to us was the difference between her chronological and her developmental age.
The Dichotomy
Why is it that the people who remind us of our child’s deficits are often the same people who seem to push their being age-appropriate? Along with that, they insist on using “age-appropriate language”. For someone with a limited vocabulary, switching to unfamiliar words would be like me switching to Latin now and expecting you to understand what I’m saying. If the point of language is to understand and to be understood, doesn’t it make sense to use words that are known to the listener? While my child’s receptive language has grown, it is still quite limited and it takes intense repetition for her to make the connection.
I do understand that the concepts of dignity and independence may underlie the argument to be “age appropriate”. It can come across as condescending to “talk baby talk” or to treat someone as if they aren’t capable. But that is more a matter of one’s intent and often comes across in tone of voice, attitude and behavior. For kids, we encourage next steps to being as independent as possible. That makes sense to me.
However, the concepts of choice and freedom are also important to consider. Dragon Tales and Barney may not be age appropriate for a typically developing teenager, but for a teen with ID and ASD, it may be developmentally appropriate. Besides, that is her preference and her choice. I promise you that if we were to try and interest her in teenage fashion or music or movies, she would emphatically respond with “no thanks” by throwing things and seeking out what she enjoys.
The Disconnect
Perhaps the difficulty comes with the contrast in presentation between chronological and developmental age. As my daughter got older, it was unsettling to see her body develop into that of a teen/young adult while her brain didn’t keep pace. The image of an adult in a diaper or still being toilet trained is hard for a mind to grasp. It makes others feel uncomfortable. But not her.
Please keep in mind that this is one perspective, my perspective on my child. It most certainly does not fit every child with autism. But I have heard this from other parents too who wonder what the push is to try and make their child something they are not. Whether it’s being okay with a chewy (item designed for those with cravings to chew or for oral motor stimulation) or with flapping one’s hands, parents ask for understanding, acceptance and tolerance of the uniqueness of our children.
Thank you so much for your perspective.
The bottom line is to meet your child where they are, not where you want/hope they are. Many of us don’t realize the expectations we harbor for our children on the spectrum. You have obviously traveled this path long enough to let those expectation go and I often think that this is the gift our ASD children give to us. To be able to truly accept them, as they are, is a rare and beautiful quality to develop as a parent,
As I awake every day, I ask for the strength to do my best, in every thing I do that day. That is truly all I can do and I have to believe that this will benefit my children on the spectrum. I have to accept that the day may not play out as I had hoped, but that’s OK because I know that I did the best I can do.
So, as you suggest, make room in your life to accept the challenges and differences that ARE your child and celebrate the little victories that come along from time to time. As we often say on my family, we’re “living the good life”!
Thank you for your post, John. These are wonderful words of wisdom.
You captured this so eloquently, John. Our kids are the best teachers about what truly matters in life. Unconditional love for and from our kids is certainly something that we don’t take for granted. I love how you have reframed what success and a good life mean for your family – not in spite of – but because of your children. All out best to you and yours!
I am a nursing home administrator and came across this article while looking for guidance on age appropriate interventions for adverse behaviors in nursing home residents with dementia. Nursing homes are highly regulated and inspected by state and/or federal agencies annually, and age appropriateness and dignity are high focus areas.
What I have come to believe is that people who make those determinations…what is officially “age appropriate” and respects the resident’s dignity…have never done the job of a certified nursing assistant (CNA). To illustrate the conundrum as simply as possible:
1. Mrs. A, 77 years of age, has adverse behaviors associated with her severe alzheimer’s dementia that include hitting and biting caregivers and other residents.
2. Mrs. A’s family visited her one day and her grandchild had a stuffed Miss Piggy Muppet doll with her.
3. Mrs. A seemed very interested in the Miss Piggy doll, so they let her hold it.
4. For whatever reason, that Miss Piggy doll seemed to calm Mrs. A, so they let her keep it.
5. It became quite obvious that when Mrs. A was holding Miss Piggy, every one of her adverse behaviors pretty much disappeared and she was a pleasant, easily manageable resident.
6. The state surveyors came in, saw Mrs. A holding her Miss Piggy doll in the lobby, and cited the facility for not respecting Mrs. A’s dignity by allowing her to sit in public view with a doll that was certainly not age appropriate.
Make sense? I don’t think Mrs. A felt her dignity was impugned. Her relationship with her caregivers improved dramatically. Her family was grateful for a solution they and the nursing home had been trying to resolve for a long time.
The job of a CNA is an extremely hard one. I started out in long-term care as a CNA after a 20-year career in the military, and I can honestly state that being a CNA was the hardest job I ever had. The physical demands are hard. Navigating all the catch-22’s that can cost you your job is much, much harder.
Bottom line: The concept of “age appropriateness” needs to be looked at very carefully…and by people with common sense.
Agreed. I am very much for re-integration with societal or perceived neurotypical norms, but only as long as they serve a concrete, rehabilitory purpose. Assuaging a surveyor’s subjective discomfort with seeing an “infantile” object is quite beside the point.
No surveyor would ever say “Your Alzheimer’s patients should all just stop acting so infantile. It makes me uncomfortable,” much less cite a facility for same. Their extra needs are, after all, why they are receiving care in the first place. They deserve extra compassion and understanding, not less.
Thank you, Gregg, for your poignant story that resonated so well with my experiences. There seems to be a lack of common sense about this issue and many others when it comes to working with patients/clients who have cognitive impairment. I agree that those who care for our elderly and those with developmental disabilities are some of the most dedicated and hard-working people out there. They deserve a lot of credit – and a big pay raise! Thanks for sharing and for all you do to support families and staff. If you find more on “age appropriateness”, please send my way!