When you just can’t describe the behavior, but you know something is not normal…

In having explained in an earlier post, I’ve recently started the process of helping my 22 year old, developmentally delayed niece re-establish herself outside of her parent’s care. She is a victim of neglect by both her local school district, child protective services (I include DCFS, as I had made my effort to file a referral and found that no investigation was every initiated, due to the lack of much needed policies regarding the State of California’s definition of Educational Neglect), the home schooling industry and her parents.

It’s important to mention that I am a Child Protection Social Worker, who works among other Social Workers. It’s expected that all Social Workers should have some exposure to working with children and adults who suffer from developmental delays. But this isn’t always true. In sharing my more recent experiences online and with a few folks at work, I did so for the purpose of gaining an idea of what others may perceive my family’s new situation to be.

One highly respected and competent co-worker of mine nodded her head “no” and stated I should “stay clear of that mess”. While other’s stated empathy on the general explanations I gave regarding my niece and her level of development. I realized that although I received empathetic remarks, not everyone truly grasped the scope of the situation. A few of my co-workers had questions that showed their lack of understanding over the massive undertaking that I and so many world wide experience when having a relative with a developmental delay. Others give awesome relative experiences that gave me some forewarning on what to expect and how to respond, or not respond when approached any further by friends and family about their opinion regarding the decision to step in and be my nieces guardians.

Last week, another one of my fabulous co-worker (now a 15 year Social Work Veteran), told me that when she was a young Social Worker she had a rather large misconception about the developmentally delayed. For one, She explained that she didn’t perceive individuals with developmental delays to be like those who suffered mentally ill. She had thought they lived in a bubble, and most likely stuck with their parents or other relatives at home, isolated from the world around them. She figured that at the time the one or two delayed individuals she encountered all fell under the same category, and were usually always non-participants of our every day world. She stated that she thought years ago that it was okay and not abnormal that their families hid them away. My co-worker stated that she thought this way because “it was what family’s did to protect, not necessarily abuse their delayed relative”. Of course she stated “I don’t think this now”. Thankfully, as she grew into her profession she realized how flawed her perception was, correcting herself along the way, changing how she assessed children, their development, the parents and their development. And although she may not see it this way, her change in perception, her adjustment to how she assessed individuals with delays, stepped her into a rather large and important movement.

I have grasped an overall idea how some professionals surround their thinking regarding the delayed. I am starting to prepare myself with how particular members in my family may be perceiving my niece’s delay. I am placing their statements and comments into questions before responding, which I feel helps the education and learning process on both sides. Do they blame her? Do they deny there is a delay? Do they blame her parents? Do they blame her? Would they rather not blame either and blame the home schooling program my sister insisted on using? Or better yet the local school district and/or child protection service agency for failing to check up on my niece’s home schooling progress, or lack there of? Or better, will they also blame politicians, current laws?

Well, lets go by what my niece says regarding blame? She stated she didn’t blame God, somewhat blames her parents. But in her mind, it’s something she has and something she wishes she didn’t have. She mentioned being excited over the idea of going back to school and learning “bigger words.” This has generated small doses of healthy dialogue, and I’m hoping that this can move forward into a learning tool for many.

As for her overall perception, she says she did know her true diagnosis until I told her and explained it to her. she stated “I thought I had dyslexia because that’s what my mom told me.” Overall, when she was informed by me about her Regional Center Assessment, the diagnosis and the grade level she currently presents, what it means, she simply took the stance of accepting it and asked if she can still one day have a good job.

We have a long road ahead of us. Stay tuned.


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