Saturday, October 23, 2010

What does BLANK equal?

I recently found the most amazing holistic chiropractors. An amazing husband and wife team who work with adults, children and families including children on the autistic spectrum. I had heard a lot of great things about them from friends at Roots in Leominster. But, I kept putting off making an appointment. Lately, I can't even look at the amount of money spent on copays, meds and holistic (and very necessary) interventions. And then, there's the time and logistics involved in getting to all of these appointments. With two boys on the spectrum--neither of which has a shortage of medical issues, it seems, I'm very busy organizing it all.

I've been working on making peace with all of this and the many layers involved. Some days I'm "there"...proud of my accomplishments, or the boys' progress. And other days are very different. They are dark filled days of anger, resentment, frustration or guilt. Friends and family of neurotypical children--or that don't have children, tell me I'm a great advocate for my children...that they will succeed because of me. Maybe. I'm my own worst enemy at times, perseverating on all of the information I can gobble whenever my keyboard or IPad are within reach! I love information in general and feel it's essential to dealing with autism.

But, it's the same love of the information and ability to "sort large amounts of it and synthesize it" that makes me aware of something else. That, maybe all of these things I am doing are going to make all the difference in the world for my children. Maybe they will have friends, girlfriends, get jobs, be independent. I need to preface this by saying that I am not a pessimist or an optimist. There, I said it. I--since high school--consider myself to be a realist. Someone who, looks at all of the information in front of them and with a little intuition thrown in, makes a good faith judgement. Sure, information can change and you have to revisit the equation and make the proper adjustments, but it's how I function, good or bad.

ONE of the things that I do not like about autism--I chose not to write "hate", not sure why--is that there does not exist a specific "equation" to help my boys. That sentence makes sense to me but if it doesn't to you, I mean to say this: OT + positive reinforcement + good IEP meetings = BLANK.
Social Skills + eating clinic + different vaccination schedule = BLANK. What is the blank? Is it progress? Is it better behavior? Is it healing? And, is it long-term? Now I know that there are lots of people out there whose children have ranged from BLANK equaling "no change" all the way to BLANK equaling "healed"...whatever healed means for autism...but what will it mean for each of my boys? The suspense is killing me.

So, my husband and I chose to take the boys out of organized OT so my youngest and I could affors to see the holistic chiropractors who are producing amazing results. They found issues no other doctors were able to find in either my son or myself and are addressing those issues. I am excited to bring my older son there on Monday for an evaluation. But, now I have become an OT. I hope I can do my best with the boys--I have yoga balls, a small trampoline, weights games AND a prize box. I will try and put together an organized session for each son. And I will do my best.

Maybe the next neuropsychological evaluation will give my youngest a new label? He's been making progress. Maybe it will stay the same. None of that even makes sense to me. Autism is such a strange animal. Maybe there's also mental illness. Maybe there's not. Maybe food allergies. Or maybe just food sensitivities. Maybe there are significant physiological issues or maybe not. Some people say they have seen kids start out with the label of PDD-NOS who then graduate high school indistinguishable from their neurotypical peers. I want to know what the means. I know the literal interpretation. So, in that specific case, cumulative therapies applied + the neurological development + ???? = indistinguishable from neurotypical peers by 18 years of age. And yet for many, the first part of the equation might be the same, yet the result remains unchanged. And, although I have always been interested in psychology, sociology and helping others, I don't think I will ever make peace with this equation. Connor has been making progress with the chiropractor, and his constipation is lessening. Like they say in the Rocky Horror Picture Show, I am anxiously waiting to see what his "blank" equals with much antici-PATION.

Thursday, October 21, 2010

It's Hard to Remember I'm on His Side

I went to a talk the other night presented by Susan Senator, a mom who speaks and writes about autism and how it affects people's lives. There was a lot of great information shared, but one piece stood out for me in the moment. She was talking about how you can become so angry about a behavior that your child is presenting that in that moment, you can forget something so important. The behaviors are part of the disability. They are entrenched in the day to day life of autism parents, to very differing degrees. What she said that stood out for me was this: "When I am angry in that moment, I remind myself, I am on his side."

This was a very subtle yet extremely poignant AND potent concept for me. For parents of autism, it needs no further explanation. But I wanted to share a recent moment where it helped me reel myself back in. And honestly, being able to work on that skill with my boys made me feel like a million bucks and made me a more effective mother.

Last night, Connor was in my bed coughing. And by coughing, I mean "coughing"! Each time my husband and I tried to get him to drink some water, his reply was "NO!" Now, of course we wanted Connor to be comfortable. But we also wanted to sleep! This went on and on for hours. I was exhausted, aggravated that my child would not just take a sip of water! Wasn't he uncomfortable? I would ask if he was tired, but that is no longer a question I care to visit after 4.5 years of sleep issues. I could have yelled, I could have been grouchy. He was fighting us on a simple task like drinking water...the affects of which would make him more comfortable and would allow us all to sleep. Frustrating? Yes.

Instead, I was calm, and while I was up, going to the bathroom--awake so long I could no longer just lay in bed and fight the urge--Connor came up to me crying. He put his arms out for a hug--which is still such a new concept for him to initiate, I cherish each time it happens. I was able to hold him. To calm him. To get to him drink some juice (organic with little sugar!) and wipe his nose. His bloody nose. It was a long night. But, I kept thinking of that little phrase, "I am on his side." It carried me through. And in the end, Connor was comforted and went back to sleep. And I got to sleep with a clear and happy conscious. Not only I did I solve the issues at hand but I was able to do it in the caring, loving and nurturing way that I always want to--but cannot always achieve because Autism, so often, takes away my own abilities to be myself. But last night, I won out.

Wednesday, October 20, 2010

Eyes on Me!

I'm not sure why it was so upsetting because I had, I think, solved an ongoing problem. Justin almost never responds to his name being called. To say it caused stress at home is an understatement! I brought up the old problem yesterday during my home visit from the school. The school's Autism Specialist had suggested that maybe he should check in with Justin's teacher and see if she had any visual cues to get his attention. The visit went like all the others. We went over information and I processed it in a general way with little to no emotion. He's had the diagnosis for almost three years now, just another this morning I asked Justin, "Does your teacher ever say anything to get your attention?" He told me that when she wants to get the attention of the class, she says, "eyes on me!" I asked him if he could do it, too and he told me "yes".

So, I waited until his bright blue eyes were locked onto the new Dr. Seuss show on TV. Wait for it...wait for a direct tone, I stated, "eyes on me". And it worked!! Not only was Justin able to respond to me on the FIRST try, but it was during a preferred task...engaged in television! He even let a little smile escape when he realized what had just happened. I did too. I waited a few more minutes and tried it again. I made sure that he was in deep in his trance between his own thoughts and Dr. Seuss. "Eyes on me!" And it worked TWICE. I let it go. I didn't want to jinx myself or ruin the moment. I told him I was proud of him. He simply said, "Mom, I looked at you because I thought you were the teacher." And just like that, went back to waiting for the bus.

It was only after I was in the shower later this morning that I felt upset. Delayed social processing on my own part. My kid either can't or won't respond to his name most of the time and almost never on the first attempt. He'll be seven in February. He's brilliant. He's beautiful. And sensitive and compassionate (when his brain allows). But, I have to say, "eyes on me" to get him to engage me? Suddenly, I wasn't happy anymore and the re-realization that he has Aspergers Syndrome hit me like a warm, uncomfortable feeling that I couldn't get rid of. Most days, I am at peace with this realization and I work hard to make sure that Justin, is at peace, too.

But sometimes, some days, it almost seems like the little things, the nuances of the situation are what upset me most. My friends with neruotypical children might ask, "If he responds to that, why can't he just respond to his name?" Maybe they wouldn't. Either way, I can't explain it either.