You know? God seems like a big jerk sometimes. Doesn't he? He's not real IN to instant gratification like I am. He is however, IN to us taking the lemon and doing something helpful with it. And not just making lemonade. Not just making the best of something that breaks me in half, but something better. Something that might actually help somebody else.This is a quote from an e-mail I just received from a mother who lives in Georgia. She's talking about vaccinations right here, but gets side tracked by her feelings. This is what she says:
"....after having parented a child with autism, I'd rather have my child DIE OF POLIO, MUMPS, or MEASLES than have to parent another child with autism. IT IS THE WORST THING THAT CAN EVER HAPPEN TO A FAMILY. At least when your child is diagnosed with cancer, people line the block waiting to bring you casseroles...with autism, they run the other way. You are socially isolated. You can't be a normal parent and enjoy your child. It's like having someone stab you a thousand times a day EVERY DAY in the back."
Bless her heart. I can relate to the social isolation thing. I really can. It isn't even really explainable. I wish it was. I wish I could write about it, describing it in detail. This always turns a negative into a positive for me. But, the social isolation cannot ever really be explained in a way that does it justice. It cannot be turned into something positive. Now, I'm pretty lucky in this area. I have you guys. The beautiful women that read my blog, not because you necessarily have Autistic kids, but because you love me. Bless every one of you for your encouragement on this.
Anyways, back to the social isolation. How do I describe it? It is unbelievably lonely to have Autistic kids. You can't go to the park or to the store alone with them. You can't go camping, fishing, hiking, skiing, swimming, or out to eat. You can't go on a bike ride. You can't send them to normal summer camps. You can't go to the gym and work out. You can't even really go to someone else's house and be comfortable. If you do have people over to your house, you have to make sure that your children don't hurt their children. Other parents quickly sense this and sometimes won't return. Of course, I don't know if it's really that or the constant screaming at my house that keeps them from coming back. Hmm.
Anyways, you really cannot do any of the normal things a family should be able to do. Why not? It's hard to explain. The bottom line is, it's just too damn hard. Not only is it socially humiliating, but it can be life threatening for the kids.
For example, Cale runs right out into the street EVERY chance he gets. He bolts for ANY body of water he sees. He has no fear and no separation anxiety. He just runs away as fast as he can. And three year old kids can run fast. He also has no sense of safety awareness. He'd jump straight into water and drown in a flash (we just had that experience with a small lake at the park we took him to this morning). He's like a giant toddler that never grows up. Now maybe if we just had him we could go do some things. But we have Isabel too.
Isabel has no stranger danger. NONE. She'd instantly hop into the car of any creep who offered her a hug. She wouldn't even need candy to tempt her. A hug would work just fine. Hairy? Greasy? Child-molesting sleeze bag? No problem! She loves everyone.
These examples don't even really scratch the surface. The bottom line is that we just don't take them anywhere unless both Shane and I can go. And when the two of us do take them someplace, it is absolutely exhausting. It takes both of our constant attention just to manage Isabel and Cale. And, as a result, Alden is often neglected. We get stared at and glared at a lot. We get told our children are misbehaving. It doesn't matter where we are (we can be at the library), Isabel and Cale scream suddenly and for no apparent reason, and don't necessarily stop.
It's no fun. We don't get to visit, we get to chase. We don't get to play, we get to chase. We don't get to relax, we get to chase. We don't get to enjoy, we get to chase. And when the screaming begins there is no shutting it down so we have to be prepared to drop anything we might be doing and leave. And when we finally get everyone back home alive, we usually pass out from exhaustion. It's soooo much easier to just stay home in the first place.
Well, that was a small but fairy good description of some of the reasons for the social isolation. I think every parent has probably experienced all of this at some level. You really don't get to do any of these things if you have a toddler. But, toddlers grow up quickly.
We've lived like this for six and a half years now and there is no end in sight. I think the fact that IT NEVER ENDS is the excruciating part. It's kind of like the Arizona heat. In June, everyone is fairly good natured and optimistic about the summer. By the end of September, however, everyone is just pissed. You can tell what month it is by the behavior of the traffic. It's the fact that it's over 105 degrees (every minute of every day and night) for nearly four months straight, that drives people over the edge.
It's impossible to really understand it if you haven't experienced it. I always have people argue with me on this. "Please come camping for a weekend with us! We'll help with the kids." And we say, "We can't. We'd lose Cale in the woods, unless we wrestled with him every minute of the trip to get him to stay near us. It wouldn't be fun at all." People say they'll help but once we get there, they don't know how to make him stay any more than we do. I suppose we could put him on a dog leash and listen to him scream all weekend. Hmmm. No. That probably wouldn't be right. Well? When you have to live with a wild animal, you start to consider things you wouldn't ordinarily.
A common one is, "Why don't you take them over to the public pool in the summer? There's a great play area with sprinklers and everything." And I say (one more time), "Because one would drown while I watched the other get sprinkled." And there is no doubt about that. Both Isabel and Cale bolt for the deep end of any pool, at any given opportunity. And neither of them respond at all to, "STOP!!!!" I only have two eyes and two arms and I can only run so fast (and then the first would drown as I ran away to save the other). And the whole situation would leave Alden unattended completely.
Anyways, back to the e-mail. Upon hearing a bit of this woman's story, I've come to realize that Autism isn't just hard for us. It's hard for other families as well. And God gives me strength NOT by handing me a mountain lake (my will - what I think I need), but through my attempting to help others. And whether or not the "others" are actually helped, is none of my business. It's through the trying to help that I get my strength.
One of the ways I do this already, of course, is that I blog about my personal experiences with Autism. As you've probably noticed, I don't sugar coat it. This is very important for me. Instead, I talk a lot about my own experiences and feelings because it helps me to identify them and work through them.
I don't (at least not yet) write much about what my children are going through because, honestly, I don't know what they're going through. Cale, for example, doesn't communicate with me in any way at all. Someone asked me the other day if he likes his pre-school. "I don't know," I responded. And that's the truth. I know he's three and a half year old. He should be able to communicate in some way. But, he doesn't. I have no idea what he goes through at school. He can't tell me.
My kindergartner can tell me about his day. Even Isabel, to some extent, can tell me about her day. Cale. Nope. I have no idea. As I figure out what they think and feel, I'll write about it. But, so far, I've been focusing on what the family goes through. I do this because it's what I needed when I started this whole process. And I find it very soothing to try to give away what I most need. The giving fills the hole that's created by the needing.
From now on, as I learn new information about what helps Autistic kids, I will attempt to put it all into words. Some of these concepts are hard to understand so I will try to put the information into everyday language for regular people. I will also probably always lace these blogs with how I feel about everything. It's just in my nature.
When I started this process, I went to look for books on the subject of Autism. I needed to know about the process a family with an Autistic child goes through. I didn't even know where to begin. There was so much information from the doctors, and no real order to any of it. I need a "do this and then do that" type of plan. I never did find one. And, I'm afraid, those don't really exist.
The reason that they don't exist is because every one's experience is so different. The first step for us was to get a diagnosis. One can do this through a developmental pediatrician (if the child is between 0-6 years old) and most insurance companies will cover this. With this diagnosis you can get state help for a 0-6 year old. If the child is six years old or older then you'll need a diagnosis from a licensed clinical psychologist in order to get state help (not cheap, but very thorough, insurance will usually cover if it is coded under MENTAL HEALTH). A little tip - check for and understand what type of psychologist you're seeing.
These doctor's (the developmental ped. and/or the psychologist) will tell you what specific therapies your child needs. The biggies are speech therapy, occupational therapy, and physical therapy. Most Autistic kids need all three. There's also music therapy, animal therapy, horse therapy, etc., etc., etc., and everyone and their dog seems to be trying to make money off of Autism. Get those therapies later if you want, but focus on getting the ones the child really needs first. I don't mean to sound negative about any of these therapies, but a family really can break themselves financially trying to get their kid "this therapy" and "that therapy." There's always some new trend so get the basics first based on what the doctor's say, and then get the others if you want to try new things and if you can afford them. It took me a long time to realize that I'm not a bad parent because I can't try EVERY new thing that comes along.
Some insurance companies cover speech, occupational, and physical therapy, but some don't. Either way apply for state help. It's always worth a try. If the state deems that your child needs the help, then they'll cover therapies and medical care for the child (either working with your insurance company to cover any remaining balances, or covering ALL of it if your insurance company won't cover any of it).
Next was to apply for state help. Find the state's equivalent of Division of Developmental Disabilities (it will be called something slightly different in each state). Through them a family will apply for medicaid for their Autistic child (regardless of income). Some may think they don't need state help. Well, the cost of raising one child with Autism is about three and a half MILLION dollars. Yeah. Anyone with an Autistic child needs state help. Jenny McCarthy got state help for her Autistic son.
When a person applies, they need to make the child sound worse then he/she really is. Parents NEED to hear this part. The reason for this is because the child IS worse than the parents think he/she is. Think about it this way - just take your Autistic child to the park and compare them to a normal child. See? That is along the lines of what the state will do. These are not the people to try and make your child look good for. A parent always tends to see the good. But, if the state thinks they can get away with not helping, then they will. If they think the child doesn't need the help then they won't give it. Here's the secret though. EVERY Autistic child NEEDS the help to have a chance at becoming a happy and self-supporting adult some day.
Finally, look to find the experiences of others. ALWAYS pray for guidance. Yeah. I said pray. Not to sound like a bully, but if a person has an Autistic child then they'd better make peace with God right now.
I've seen a ton of books titled something like: My Johny, A Very Special Boy. The problem with these stories is that they are mostly about Johny. Not Johny's mother. And I guarantee that what you want is Johny's MOTHER'S experience. Actually, what you want is the experiences of Johny's, Ted's, Nicole's, Buffy's, and Blow Joes's mothers. This is because there is no other person in the world like Johny. Just because Johny has seizures and my child doesn't, does not mean my child is not Autistic. The fact that my child doesn't seem A THING like Johny DOES NOT MEAN MY CHILD IS NOT AUTISTIC. You see, when I read about Johny it deepened my denial.
The behavior of Autistic kids varies so much. No two Autistic children are ever the same. Nor will any Autistic child have the same experiences as another Autistic child. There is however, a basic process that the family (including their Autistic child) has to go through to get help. And unfortunately, even these experiences will be different for everyone. There's no cookie cutter answer. What's needed badly are the personal experiences of the families. Especially, the mothers. They are who told me what to do. And that is what I'm trying to provide here.
Shane has just registered us to take a class through the Southwest Autism Resource and Research Center. It's a JUMP START class that we will both need to attend, two mornings a week for four weeks. Ouch. This is going to cut into the sick days big time (No. Of course the company won't help him with this).
This class will cost us another $500 that we don't have (will have to put it on a credit card). It's a class that will teach us about Autism and give us training in ABA (Applied Behavioral Analysis) and how to apply it within our home. Do you know what ABA is? In a nut shell, it is behavior modification. And it is not always pretty, but the research shows real, consistent results for Autistic children.
You see, my Cale won't talk. He won't even TRY to talk. And it's not because he's an idiot. Its because he's Autistic. The key word here is "WON'T" not "CAN'T." It's going to be very hard for Cale to learn to talk, so he doesn't want to. ABA encourages an Autistic person to talk (and helps with other things too, like potty training). It breaks communication tasks into small, manageable parts and uses cognitive dissonance. Do you know what cognitive dissonance is? It's creating just enough discomfort for a person to becoming willing to do something different than he/she has always done before.
An example of it in a kindergarten class would be - everyone else can read the word "is" and the teacher is going to be asking us to read it out loud in front of the class tomorrow. I guess I'd better learn how to read the word "is." In ABA it looks like - I won't get that piece of candy or toy or whatever it is I want, until I at least try to say it, nor will they let me avoid. They'll take over anything I try to get my hands on until I try to ask for it back.
ABA is a behavioral approach, and some sort of behavior therapy is often necessary for an Autistic person who is non-verbal, if they are ever going to learn to communicate. Because it's not just verbal skills that are in jeopardy here. It's the fact that Cale won't learn how to communicate in ANY way unless he's forced to. He's a stubborn little thing. He may never learn verbal skills, but we do need to teach him to communicate somehow.
So, as they were describing what we'd be doing in this class, I couldn't stop crying. What I know so far is that Shane and I will be in one room. They'll take Cale into another room and implement the therapy with him while they teach us how to implement the therapy in the first room. (I'll have to explain behavior modification in my next blog. I'm too tired tonight). Then, after while, we'll watch them do the therapy with Cale through a T.V. set. I tear up instantly at the thought of this. Not only will I get to see him NOT be able to perform the most basic of tasks (which is ALWAYS so much bigger to me when other people can see it), but I'll have to watch them make him cry. Maybe by telling you about it, I can keep some strength.
