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. 

Alone.

Together.

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.

Smiling.

Encouraging.

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 

Encouragers are needed. Be one!

I have a lot of stories left to share and new ones developing daily so I will not be running out of material soon.  By the way, if you have any questions about autism, our foreign adoption, ADHD, or strategies that help us cope, feel free to ask. If you want to hear more about any particular topic, let me know. 

When I meet a mom or dad who tell me they just received a diagnosis for their child my heart breaks for them. I remember the night I self-diagnosed Tate with autism.  He was two and a half. The hand-flapping had just started and Tate was withdrawing more and more into his own little world.  He still slept with us, as he did not sleep well at night. Erratic sleep patterns are something many people with autism suffer with. That night, as I lay by Tate, he was whispering. It sounded ritualistic and I asked him several times what he was saying. He couldn’t tell me. He had lost much of his language by that time, and he was often speaking gibberish. It was like a foreign language he could understand and he was talking to someone I could not see. When he was finally sleeping, I got up. I was worried sick, literally. I got online. I started typing in some of the symptoms I had seen. I thought I would find that Tate was mentally ill. Instead, I found the same word over and over: autism. When I read the signs of autism, Tate had almost all of them. I woke Shawn and we talked for a long time. He was able to go back to bed, after a while, but I stayed up all night, reading and trying to find answers. What were we going to do? How would I be able to deal with it all?

This was taken right about the time of the diagnosis.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I remember all the things I should NOT say. I should NOT say “I have thought for a long time there was something wrong.” It is like telling someone who is overweight they are fat. They already know it. How would it encourage a devastated parent to tell them that you have suspected for a long time their child was not developing as he/she should? The parent “knew” too but needed to figure it out for themselves and deal with it before making an announcement to the world. Does an “I knew before you did” attitude really need to be voiced? 

I should also NOT say “Everything happens for a reason.” Think about it.  What is that supposed to mean? I have heard it from people after I lost a baby, after Tate was diagnosed with autism, and after other tragedies. Everything does not happen for “a reason.” God doesn’t reach down and zap people with tragedies or illnesses so others can learn from it. Bad things happen to good people every day and it is not God’s work. If a finger should be pointed, then point it at Satan, not God. Everything does not happen for a reason. Babies do not die for “a reason” and little boys do not get autism for “a reason.” We make the best of these bad situations and learn from them but it is not “a reason” for what has happened. See Rule #11 in My 15 Truths of Parenting Special Kids.

When I meet a mom or dad who tells me they just received a diagnosis for their child, I try to encourage them. I tell them of other children I know with autism and the good outcomes I have seen. I do not tell them about the children I know who are not making progress. If someone you know is diagnosed with a health problem, do you tell them of another person you know who has died of the same thing? I have surrounded myself with encouragers. It is so much easier to give Tate and Sydney what they need when I have cheer leaders. If you are not an encourager, practice! I challenge anyone reading to encourage someone you know, this week, who is parenting or teaching a special needs child. Or encourage a handicapped adult. If you don’t know someone, then look around you. A lot of times you will see people with a special need returning carts at a store, wiping tables at a fast food restaurant, pushing a broom, or stocking shelves. I try to speak to those people as often as I can these past few years. Make eye contact, smile and say “hello” because many people treat them like they are invisible. I used to. One of those people may someday be my son or daughter… or your grandchild. Think about it. 

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Note: The morning after I found autism on the internet I got Tate into our pediatrician and he confirmed my fears but was not qualified to give us a diagnosis. The wait to get into a specialist was 3 months. In the meantime, we started early intervention by hiring a behavior consultant and developing a discrete trial program to teach Tate the things he was not learning. I will describe our discrete trial program and what early intervention entails in future posts. I will also describe that visit to the developmental pediatrician to obtain a diagnosis.

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