Special Needs Families Should Never Struggle Alone
The following guest blog post was submitted by Teresa Cooper of EmbracingtheSpectrum.com
Sometimes it takes a trigger event to realize that you have just fought too long for what your child needs. I have gone along thinking that I’m okay because things happened in the past and they’re in the past. Now, though, going over all the struggles we’ve had this year, the frustrations, the lack of crisis intervention, and the unforgettable advice from a mobile crisis unit who never even sent anyone to our house has left me, once again, alone and raw with emotion.
Knowing I’m Not Alone Doesn’t Help
After talking to other parents, I know I am not alone and that other parents experience the same things we do. However, the affirmation from other parents in the same situation just makes me more angry than glad that I’m not alone. While I realize that we’re not in a big city with lots of resources, we’re not in a low-income developing country either. Everyone should know what autism is by now. At the very least, everyone should know that not all children are the same. Awareness is not enough. Acceptance? Where’s that? How can daycare after daycare fail to train their staff to better manage children like mine? How are families like ours supposed to hold jobs and take care of our children?
How Did This Become an Unsolvable Issue?
The summer is so much better for us because I don't have the additional stress of not knowing when I’m going to get a phone call from someone to come pick up my child while I’m at work.
Since I know what my child needs, we just don’t have issues at home with violent behaviors. I’m relieved and glad to be able to take a big, long, deep breath during the summer, but when it came time to return to work, I still had no answers about childcare for my son.
If I could clone myself so I could exist in two places at once to help de-escalate my child or be there in the moment to help them figure it out, I would. Science hasn’t come quite that far. I know people say it’s best to stay in the present, but I also recognize that aside from the fact that I think about things constantly and try to fix and solve problems before they happen, I knew this was an issue that I alone had to figure out.
Ultimately, we wound up finding our own support person for my son until Easter Seals finally put together a fantastic after-school program that fits the needs of children with autism and all sorts of disabilities.
Would You Want this for YOUR Family?
Listen, whoever is out there reading this right now. Listen as though I am speaking to you in person. Pretend you’re seeing a real family (because we are one) and then pretend that this family is yours.
What would you do?
Would you keep doing the same thing?
The same thing that doesn’t work? The same thing that resulted in your family breaking down and calling a mobile crisis unit and in response to the question of “what should I do,” being told that “your guess is as good as mine?”
Do those words come from a person who cares? Who wants to help? And after being told that you need to just handle the situation yourself, do you ever bother to reach out for help again? Think about that. Sit with it. Mull it over.
The next time your child, who doesn’t have access to a developmental therapist because the one place that has such a person is either (a) too far away or (b) not accepting new patients, puts holes in the walls, injures himself to the point of bleeding, or hurts other people, would you trust the mental health system that gives you such sage advice?
If your answer is “no” then you, person who helps make policies in this state, you fix it. Because as families, we can contact legislators (I have) and we can get medication (we have), and we can receive the services available to us (we do), but none of those things help when we do it alone, and no other voice stands up to say that this isn’t working.
Our children need more advocates than just one or two families alone shouting at nothing (which is what it feels like sometimes). Our children need the voice of communities rising up to make a change for the better.
Teresa Cooper is a 30-something wife, mom and teacher from Havelock, North Carolina. While she is currently on her way to a Master of Science in Education from Walden University, she has a BA in Psychology with a minor in Creative from the University of North Carolina at Chapel Hill. Having struggled with anxiety and depression most of her life and later having birthed a child with autism, she is passionate about spreading awareness and acceptance of mental illness and autism, and has been writing for Embracing the Spectrum since 2011. She also writes for The Mighty, The Huffington Post, and The Educator’s Room.