Last Friday I had the opportunity to attend and speak at a symposium for the Faith Inclusion Network of Dallas (FIND). The symposium was entitled “Weaving Inclusion into our Faith Communities.” Excellent topic…not awareness or tolerance, but INCLUSION. So many people identify themselves though their faith and, regardless of how devout they are, many people look to their faith communities for socializing, school and resources. I loved the idea of devoting a few days to the discussion of really integrating people with all kinds of disabilities into the mix. It’s not enough to put a wheelchair ramp outside or a puzzle-piece sticker on a window. Through the lectures I heard and discussions that were held, I learned that people (both the disabled and the able-bodied) need a lot more information and practice being comfortable with each other.
The topic that I was asked to speak on was “Weaving Valuable Supports for the Parenting Experience.” The organizer of the event (Julie) used to be the admissions director at a school that Gray once attended. We applied 3 years in a row before Gray was accepted into their program and Julie told me that she always admired the way that I was completely honest about Gray’s abilities and challenges. She said that many parents were not completely truthful in their child’s level of need and it made things difficult for the school to evaluate the educational goals. She also said that she admired my ability to accept rejection gracefully when Gray was not admitted to the school the first two times. I know that rejection of your child from a school program just means that he is not appropriate for the services they are offering at that moment. Apparently, many other parents just view that as rejection of their child for being the person that they are. She wanted me to speak to the group about the value of really knowing your kid, being transparent about things and being diplomatic while advocating for your child.
For me, these things have come fairly naturally. The young moms’ group that I have grown with is primarily physical or occupational therapists like myself. All of my friends were comfortable with disabilities on a professional level just like me. I remember one playgroup early-on when we were meeting at my friend Sandra’s house. Her daughter became very alarmed when she discovered Gray chewing on the head of one of her Barbie dolls. Sandra just calmly took the doll from Gray and gave him some other toy that would weather the chewing a bit better and told her daughter that everyone likes to play with toys in different ways. Some people like to dress them up and some people like to chew on their squishy heads. Her daughter immediately calmed down and went to wash her Barbie. Now, years later, her daughters often ask about how “Baby Gray” is doing in his therapies and when he might like to come play again. Because of her attitude and the attitude of all my friends, their children are quite comfortable around Gray and his strange behavior. As a result, I have never felt inclined to hide Gray or his behavior from anyone. I am not ashamed of him and I know that people won’t be comfortable with him unless they know what to expect. Of course, I have mentioned before that I might limit the places we went with him or the houses we would visit based on my assessment of the level of civility required; but I would never have thought to limit information that I would share with professional educators or community groups.
So, holed up in a conference room at Barry’s office one evening, Barry stood at a white board with a marker ready to go. What did I want to say to my audience? How could I tell parents and clergy and program managers the best way to support the parenting experience? A radical idea came to me: labeling.
It seems to me that our current obsession to avoid labels is causing some real problems in the special needs community. I recently heard Temple Grandin speak on a radio show and she said that it gets her really upset when someone is introduced to her as “autistic.” Her point is that people are so much more than their diagnosis might reveal. I agree with her on that, but I’m afraid that message has gotten conflated with the idea that denying someone’s diagnosis or hiding it is ok. Especially in the realm of seeking help, I believe that labeling is incredibly useful for everyone involved. For a parent who is worried about their child, a diagnosis can provide some guidance on topics to research and specialists to consult. For a person in the general public who might be uncomfortable or shocked by a kid who is behaving bizarrely (like pulling their hair, or throwing a tantrum or stealing food off of someone’s plate), giving a label can change a moment of anger into a moment of compassion. And, for a person in a position to educate or care for a child a label (along with lots of specific details) can make the difference between providing meaningful help and a lot of frustration.
I really hope that I didn’t come across as preachy (ironic in a faith community talk, I know) or gave the impression that I have this all figured out. But, I have been told time and time again that the quality of care that Gray receives is a direct result of my willingness to accept the situation and be completely transparent about what he needs. For the parents, I hope to offer advice. For the helpers, I hope to offer some insight. I hope that the following information was helpful to my small crowd.
Here are the main points I tried to get across:
1. Accept the label. A label does not change who the person is. A label does not limit the potential of who the person can be. A label does not encompass all that a person is, but it is a good place to start in organizing expectations of others.
2. Say the label out loud to others. Shame – and not the label – creates the limits for your child. If you can’t go out to restaurants or public pools or birthday parties because you don’t want others to see, then shame (not autism) is ruining your life. The world is full of people with kind hearts and a willingness to help. If you stay inside or pretend that nothing is wrong, no one can help you. I am a big fan of the famed shame-researcher Brené Brown. I think this quote sums up what I’m trying to say. Just replace the word “story” with “label.”
“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”
― Brené Brown
3. Receive the assistance that is already out there. Autism awareness and compassion are very helpful when you are on a hellish flight or enduring a tantrum in a restaurant, but you have to be more proactive to get real help. The real help is waiting for you, but only if you go looking for it and are willing to be completely honest with what you need. What is the goal you are working towards? If your answer is, “to make my kid normal” or “to have the life I planned before I became a special needs parent,” then you are on the wrong track. Go back to step 1. It’s time for some acceptance of the situation and the goal needs to be for EVERYONE in the family to live a good life at their highest potential. If you can embrace that concept, then you can look at the specific things that are preventing you or your spouse or your other kids from doing what makes you happy. Here are some examples of services that can help:
* Therapy – Make sure and share your goals with your therapist so that they can work on things that are functional and helpful to YOUR family. Field trips can be very helpful in learning techniques to navigate the community.
* Medicine – This can be a tough one to accept. But, everyone needs some peace and a child who is awake all night or screaming and destructive all day is not good for anyone’s mental health. As my husband said when we finally decided to get some medication for Gray, “We are not leaving this office until one of us has a prescription!” Unfortunately, the tranquilizer blow-darts are not yet on the market for kids with autism.
* Assistive Technology (or Service Animals!) – This one was also easy for me given my background. But, I know a lot of parents who resist getting a communication device for their kid because they worry that it will diminish the likelihood that they will every speak. Not true. Many studies have shown that kids with language disorders will learn achieve a higher potential for speech if they are able to experience the value of communication through an assistive device. Besides, according to typical kids I’ve interviewed: a kid who doesn’t speak is weird, but a kid who uses and iPad to speak is SUPER COOL. Likewise, a service animal like Hope can be truly life-changing. Of course, you have to be ready to embrace Step 2. I leave the house everyday with my kid strapped to a dog that wears a sign announcing his disability.
* Schools – It is incredibly important to find the right fit when it comes to selecting the program that will educate your child. You don’t want to shove your kid in somewhere that isn’t right for them just because you heard it was a stellar school. Stellar to one family can be a nightmare to another. And, once you are in, it is even more important to have open communication with the people who are working with your child. Don’t leave it to them to figure out the needs and address them.
* Long Term Care – This is another tough area. Depending on the severity of your situation, you may or may not need to consider this. But, if you can take some time to imagine the long-range future options for your child, you can be better at setting goals right now.
* Financial Planning – In Texas, kids who have an autism diagnosis are entitled to many insurance benefits that are denied to kids without a diagnosis. Getting a label can be worthwhile if it keeps you from going bankrupt. Also, there are Medicaid Waiver programs and other financial benefits that have long wait lists. It’s better to get your kid on the list and hope that they won’t need it when their name comes up than to look up 10 years from now and realize that you could really use a program that has a 10 year waiting list.
* Advocate without being adversarial. I’ve written about this before. Click the link if you care to read my thoughts.
After the conference was over, Barry and I went home and started getting the kids ready for Night Owls. That is a respite program at a local church that offers a parents-night-out for kids with special needs and their siblings. My kids all love it there. Last Friday they had a carnival. It may have taken 2 grown-ups to keep Gray in check, but they did it with a smile on their face and Barry and I enjoyed a date night knowing that our kids were happy and safe. Of course, in order to get on the wait list for that program, you have to fill in the line that says “Diagnosis.”