Saturday, February 27, 2016

Helping Tate Stay Afloat

Most days I am an encourager. I can play the part of Pollyanna as well as Haley Mills did in the old Disney movie. And I cannot be shaken. Go ahead world: throw things at me. Go ahead autism: hit me with your best shot. I will not be discouraged. I will not be swayed. If there are silver linings to be found I will uncover them.  

But the truth is: even when I am acting the part of Pollyanna I know that Pollyanna cannot make our reality better. She can only make us feel better about our reality.

There are occasional days when I cannot convince myself to play the part of Pollyanna because I have become disheartened. When that happens, I feel like I am just one big heavy sigh away from the edge of hopelessness. Days like that sneak up on me. They come at times when I am tired or when autism shows us something we have not seen before and have not prepared for. They come when autism has won the battle and kept us from teaching Tate one more skill he needs to succeed in this life. 

Those days I feel as if I am drifting in a dilapidated boat in an ocean of autism. My son Tate and I are adrift together, but his disability isolates me from him so it is as if we are each alone. 



There are clouds above but I cannot find the silver linings. Drops of despair pummel me, filling the bottom of our boat with water. The unforgiving drops sting and leave marks as uncomfortable reminders. Tomorrow Pollyanna might minimize them for me but she’s nowhere to be found today.

The school year is coming to a close and it is time for meetings and evaluations and report cards, I hear the teachers say, “We enjoy your son so much! He’s doing well in school!” But then I look at the papers lying in front of me. In a nutshell, they say, “Your soon-to-be high school student is still working on second grade math and reads at a fourth grade level.” How can this be? Pollyanna! Make me feel better! Have you nothing to say this time? Well at least grab a bucket and help me bail! Our boat is sinking! Do you not feel it? HELP ME BAIL! 

Sometimes, on these days the ocean becomes so rough it leaves me seasick and deeply discouraged. I long for solid ground, the ground I used to stand on, before the overwhelming diagnosis of autism. The land of opportunity: where I used to picture Tate going to college, working, driving, and raising a family. It no longer seems like a land of opportunity, but like a land of impossibilities. 

I feel the waves of unforgiving truth trying to capsize our rickety boat. Pollyanna might say things like: “It could happen one day.” Or she might start listing famous people with autism who overcame the odds. She’s always the optimist. 

But deep down, even Pollyanna knows, no matter the age, Tate will probably never be able to problem solve on the level it takes to drive. He will never have the skills needed to fill out a job application or take a college course. He will not be developing the kind of maturity it would take for him to live independently. That’s the harsh reality, and no amount of cheerleading or feel-good sentiments will change that. 

Some days I have to face harsh ugly facts and a Pollyanna attitude cannot dilute the grim reality. 

The boat is still afloat but the waves are coming in over the sides as I frantically bail water. The rain still falls into the boat from above. I cannot let the boat sink! I can swim in these waters and perhaps reach the solid ground. But Tate cannot. 

He does not know yet. He does not understand that he will never truly grow up. His body will age but he will forever need the supervision and guidance he has always needed. 

I have to keep bailing and keep him afloat. 

I search for an umbrella or anything that can help me keep some of the water from falling into the boat. And I find something! It’s not big enough or strong enough to completely block out the rain and the waves. But it helps, just enough. And my resolve is strengthened. 

I have asked Tate’s siblings to make promises to me. And they do. Someday they will take turns keeping Tate safe, helping him to stay afloat. My hope is that the promises they have made me about the future are not unrealistic. I know the promises I have asked them to make are unfair. But autism does not play fair. Autism is unreasonable. Autism steals and cheats. Autism makes overwhelming demands and tries to sink our boat. 

I will continue to balance in this shaky boat as best I can on the hard days, keeping Tate safe until I’m too old to do it anymore. Pollyanna will be around on most days finding all the silver linings.



Because Pollyanna can make us feel better about our reality, even though she cannot truly make our reality any better.

You might also like to read: The constant drip, Perseveration 

Sunday, February 14, 2016

Coffee Tables Aren't Hot

When you hear the word “autism” where do your thoughts go? Does your mind start whirring through words or acronyms associated with an autism diagnosis? Do you think of: echolalia, stims, meltdowns, an IEP or SPD? Upon hearing the word “autism” a lot of us would picture a loved one and some of the stereotypic behaviors demonstrated by him or her. The word “autism” probably conjures up things in my mind that are not necessarily brought to your mind at all. I think of my son Tate and some of his unique quirks and stims. I think of his anxiety, his lack of social awareness and his literal way of thinking. In my mind, this is what autism looks like:

Social awareness and how to treat others is a daily theme. Tact is not easy to teach and when it has to be taught in each individual setting it becomes very challenging. I constantly remind myself that Tate is not intentionally rude. He genuinely does not understand what is socially acceptable and what is not in many situations. 

Then there's the literal way of thinking that is both endearing and at times maddening.

Tate keeps our home lively and interesting to say the least. A sense of humor is a must when teaching Tate. Laughter is a huge part of who we are. I've found the cartoons encourage and teach, as well as lighten the mood when autism tries to darken it. I hope you enjoy them as much as we do. Tate likes seeing himself as the star of the show in these illustrations. If you'd like to see more then visit our Facebook page Quirks and Chaos. 

Click here for another blog post showcasing Tate and his literal way of thinking: There is no ham in hamburgers

Monday, February 8, 2016


Because I applauded the CDC's bold recommendation last week I've heard some arguments from women about why the CDC's statement was ridiculous. If you have not heard already, the Center for Disease Control made a recommendation that sexually active women who are of child bearing age and not on birth control, abstain from alcohol. There was public outcry. Social media was abuzz and so few seemed to be standing with the CDC. And then there were so many blog posts making fun of the CDC and calling them condescending for their recommendation. The CDC's recommendation targeted women only. It did not include men. And after all that drama, because I am in support groups of parents who are raising children with Fetal Alcohol Syndrome (FAS), I got to see that I was not the only incredulous person online who could not believe that people would argue with the CDC's statement. You see, those of us who know what FAS looks like and see the kinds of lives our children are living cannot fathom anyone drinking while pregnant. My daughter's birth mother could have abstained from alcohol. But she did not. My daughter will pay the price for her whole life. 

Here are a representation of some of the best explanations I have seen this past week that definitely justify the use of alcohol by women of childbearing age who are not on birth control. 

Reasons sexually active women who are not on birth control should be able to drink with a clear conscience:

1. Because men do not have to abstain so it is discriminatory to tell women they should!

Mother Nature is such a chauvinist huh? She only gave wombs to women, not men. It’s about biology, and nothing else girls.

2. This one is really just like the first: If my boyfriend/husband/guy-I-picked-up-at-the-bar gets to drink then so do I!

You cannot find a sex partner who is willing to abstain while you stay sober too? Do you really want to have sex with that guy? If you do, then I got nothing else to say except, “Wow.”

3. Because women have to endure so much for their children (or future children), sobriety should not be added to the list of inconveniences.

I actually have to say it again, “Wow.” You know that baby you may or may not be trying to create? It’s going to do a lot of inconvenient things. And the alcohol you are drinking because you have the right? That alcohol is going to make all those things that kid does that might be inconvenient MUCH more inconvenient. A kid born to a mother who drank will need a whole lot more from her than a kid who is born to a mom who abstained. Kids with Fetal Alcohol Syndrome (FAS) are exhausting.

4. Because it is not right that, even though I may not even be pregnant or become pregnant, the things I want are still put second to a non-existent baby.

So you are on birth control then? Because if you are not then that non-existent baby is not necessarily non-existent anymore is it? Sex creates babies. Drinking alcohol while pregnant creates babies with FAS.

5. Because I know a kid whose mom drank while she was pregnant and he turned out just fine.

Right. It could happen. There are SOME babies born to drinking mothers who do not appear to have alcohol related disabilities. Fraternal twins can even be affected differently while being exposed to the same amount of alcohol in the womb. Do you really want to take a chance? And those babies who do not appear to be affected just might have been even smarter, even more talented, even more “normal” than they already are if only their mother had abstained completely. Look your kid in the eye a few years from now and let him know he might have been even smarter, even more talented than he is now, but you really wanted to have just a drink or two while he was developing.

6. Because some doctors still say a little alcohol is not harmful to an unborn child.

The best reason/excuse yet! You can find a few doctors and articles that will say moderate drinking is not harmful to a baby. You will find far more doctors and articles written that recommend a mother not drink at all. You really want to take a chance? With your kid?

7. Because not drinking is unrealistic. You would have to be a Quaker to avoid alcohol (or unplanned sex). 

Really? I am no Quaker. It really is possible to have fun without alcohol. It really is possible to put your unborn children (even the unplanned ones) ahead of alcohol. Really. 

I reserve the right to add to this list as I'm quite certain I am about to get a few more reasons from women that they should be able to drink with a clear conscience. 

We are not animals. We are people. We get to plan ahead and make complicated decisions about our future and the future of our children. And yes - even the future of our future children. Is alcohol really that important to you? Really?

I do not imagine I will change the opinion of one woman who is drinking and having sex. And I doubt this will boost my blog page. I will most likely lose a few followers. Why then do I feel compelled to write about such a controversial and hot topic? It is because I have to stand up for the things I believe in. If I lose a thousand followers over this post, so be it. I will not be debating the topic any longer. Last week when this topic was being argued on my Facebook Page, one of my readers came to my defense and asked another why she would come to the page of a mother who is raising a child with FAS to argue that alcohol and unprotected sex are not a big deal. It is such a big deal. 

Note: Before I get dozens of comments saying it is not so much WHAT the CDC said as the WAY they said it, I would only respond that it might have been said just a little more eloquently. Perhaps the issue of men and how alcohol damages sperm should have been addressed. But I still stand with the CDC on this one.