Special Needs Families Should Never Struggle Alone
Just spent 30 minutes on the phone with a researcher who asked me questions about the quality of services for developmentally delayed children (which includes autism). 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 of “your guess is as good as mine” has left me, once again, alone and raw with emotion.
First of all, Knowing I’m Not Alone Doesn’t Help
After talking to the researcher, I know I am not alone and that other parents experience the same things we do. However, the affirmation from the researcher that she had heard a theme 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 third world 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?
[bctt tweet=”Knowing we’re not alone in our struggle for special needs support isn’t enough.” username=”embracespectrum”]
How Did This Become an Unsolvable Issue?
Honestly, the summer is so much better for us because it lacks 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 in about 6 weeks, I’m going back to work and there’s still only one daycare left that hasn’t given us the boot and he’s at it. 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 know that this is an issue I’m going to have to figure out.
The Wheels of Change Move too Slowly and Are Steered by the Wrong People
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 know that this is an issue I’m going to have to figure out. While it is promising that our great state has taken steps to hear from parents so that they can develop programs that better meet the needs of our children, I also know from experience working for the government how quickly the wheels of change move. Gathering data does not make the change happen. Many, many conversations will take place between now and then, and the message from us parents will get diluted by the time the people at the top are done arguing about what our children most need and how much money they have in the budget. The discussion will become one of how to spend the money and eventually they will decide how they can put a patch on an already broken system. I’ve also seen how well patches work because I’ve used them on my son’s pants. The patch holds up well enough, but the initial system, which is already outdated and tired, will need more patches. Instead of replacing what doesn’t work and having a healthy system, people will fear change and still insist on the patch.
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 being told, in response to the question of, “What should I do,” 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). They need the voice of communities rising up to make a change for the better.
All Children Need Love and Support
These children are children just like any other children. They want love. They want understanding. They want friends. They don’t want to feel alone. That means people everywhere need to try to take the time to understand, they need to reach into their hearts and love, and they need to teach other people to do the same thing. This means building empathy in adults and children. It means providing others training and support to develop the skills of deescalate a crisis situation with children who may not have the words to talk about it. It means so much more than I can even say right now, but I want to help it exist. I want it to be there, and not just for my child. For all the children I know who have to deal with people who tell them that they’re being “bad” or “mean” and fail to understand that these words don’t help raise self-esteem or create a positive situation from which a child feels safe enough to try to speak words that they likely know won’t be understood. Children with developmental delays, autism, ADHD, ODD, or whatever other label we throw at them so that we can name them something other than children still deserve to feel safe in the world. When are we going to realize that children without words to express themselves still understand most of what we say to them? They still feel our feelings. They still learn whether the world they’ve entered is one that they can trust or not.
[bctt tweet=”All children need love and support. How can you help?” username=”embracespectrum”]
Spread the Message
I honestly have no idea who to direct this at. It seems like everything is all tangled up into one big system that I don’t understand at all. But if you could at least help spread the message that there are families out there who need support that just doesn’t exist, that would do something. Families should never have to struggle alone, isolated from the outside world by a lack of resources. We’re just not built to survive that way. Maybe if enough people know about it, eventually the right person will read and try to help.