Autism and Goals

I typically look at goals and progress in relation to my son’s autism in one of two ways. There is how far we’ve come and how far we have to go. Cooper is almost seven and I believe he is thriving. When he was first diagnosed we had no idea what the future held. Autism was and still can be a mystery. Add in words like nonverbal and medically complex and it’s even more confusing. We don’t have a crystal ball to tell us what his future holds but I truly believe we have overcame some of the more challenging parts. I think we are finally on the right path.

A Picture Says a Thousand Words

In the past year my son has crushed so many goals. I attribute his recent success to ABA and getting his diet and medical issues more manageable. Just look at this picture. He’s standing next to his brother. He even has his arm around him.  Cooper is smiling. He’s out for a walk. He doesn’t have a Kindle in his hand. In the past year, Cooper has conquered so many goals. And each one of them took blood, sweat and tears from our entire family. Not just me or his dad. All of us. I like to say that our whole family has autism. We all have special needs. We live it daily. We are constantly teaching and modeling. That’s our life. And that’s what is going to give Cooper his best life.

Conquered Goals

In the past year, Cooper has started drinking water, using a straw, eating pureed fruit, eating meat, communicating both verbally (no words, just sounds), and with his device. He’s started wearing clothes and even trying to dress himself. He’s a tiny bit less rigid. He’s willing to try new things. He can now be motivated by rewards. That is HUGE.  It’s safe to say that he’s more social and engaging. People in our world are always commenting on how funny Cooper has become. His personality is really starting to shine through. And, of course, the gigantically huge success of potty training. I always add in that I never truly believed that my son would ever be potty trained. That’s how impossible the goal seemed. And yet, we did it. He did it! And yes, it almost killed me. But together, we made it.

We even set family goals. Both Jamie and I are pretty far along on the acceptance path. That may not sound like a big deal to people outside our world but to anyone that lives it….it’s huge. We try and talk about autism and Cooper’s strengths and weaknesses often with Sawyer and other people. Autism is part of typical conversation at our house. We don’t hide it. We’ve learned to be more nimble and go with the flow. We’ve even learned that we can’t do this all on our own. We need help.

At the Bottom of the Mountain

Then, there is the other part of goals and progress that is harder for me to talk about. Some days I look at my son and how far we have to go and I feel like giving up. I’m human and whether I’m at the bottom of the mountain or halfway up we still have a long way to go. And it’s not an easy climb. I feel like I’m wearing a 500 pound pack on my shoulders. I am not adequately rested, hydrated or even educated for a climb like this. And I know I’m not emotionally stable enough. I also don’t know where I’m going or where the end destination is. I do know one thing though…GIVING UP IS NOT AN OPTION. Some days I’m alone. Some days I have a team. Every day it’s hard.

I’ll even question how my beautiful, smart boy can need help with every single skill. Skills that come so easy to the rest of the world. What does this mean? It means I am manically chasing goals.

Goal Chasing

Here are a few examples from this morning. Cooper is eating his breakfast completely naked. I make a mental note to work on clothes tolerance. I also see that he doesn’t have his talking device. I need to make sure he has that near him more. As I set his breakfast down I see that he has the table stacked with 20 or so of his favorite things. I make another note to work on object elimination. We give him choices of the items he wants to keep and try to bring it down to two or three. I see him eat his waffle with his fingers and completely disregard the fork sitting on the plate. Another mental note…work on silverware. Then he yells at me about his cup. I apparently gave him the wrong one. Another mental note to work on cup variety again. I’ve seen some regression in that area. And wow…the screaming. He needs to get my attention nicely. I remember his therapist said to not acknowledge screams. Acknowledge him when he gets my attention nicely. I should work on that again. I’ve been lazy.

This is a five minute period.

Having a child that is 100% vulnerable and dependent on you is hard. I refuse to deny that. I still feed him, dress him and bathe him. He has zero understanding of safety or danger. He has no words. No concept of playing or acknowledging children. What is a parent supposed to do when they have a child who needs help with everything?

Goals, Goals, Goals

I’ll tell you how. We set goals. They vary from small to large to short-term to long-term. And they are always changing. We involve grandparents, friends and therapists. I make sure we are ALL on the same page and working towards the same successes.

I also think it’s important to admit how overwhelmed I get when working towards goals for Cooper. It’s not because I’m lazy, non-committal or flighty.  Cooper needs help with everything. Even more challenging, ‘something’ always takes precedence. Simply put, let’s say we set the goal of sitting. I’ll put all my energy and creativity into Cooper sitting. We will be doing great for a few days. Then, something takes precedence. This could be a new behavior like hitting. Cooper will get frustrated with the goal and start hitting. And boom. We are working on eliminating hitting. As we get back on track let’s say he starts acting ‘different.’ He starts waking up early, lining items up and humming.  Suddenly I am trying to figure out if he is sick. I’m calling doctors and teachers to try and figure out the mystery behaviors. Before I know it, the goal of sitting is lost as I try to navigate him out of the regression.

What Skills Does He Need As An Adult

I have so many goals for Cooper. I could list off dozens at any time. Using headphones, less technology time, communicating, self-care, sitting, walking, interacting, etc. It’s too much though. I have to narrow it down to three at a time.

The other day, after a particularly long weekend of being ‘trapped’ at home I had a revelation. My son is getting bigger and there is going to come a day when I won’t be able to control him anymore. The isolation I feel now is only going to be worse when he is 180 pounds and 20 years old. We need to work on his ability to be in the community. What does he need to be able to do to be at a restaurant, park, movie or zoo. He needs to be able to sit, walk and be present in a situation. He needs to be calm.

Any goal with Cooper takes boatloads of patience and repetition. I would be lying if I said I wasn’t overwhelmed by his lack of safety and inability to sit. Our family needs some relief. We need to be able to enjoy Cooper.

Our Current Goals

(For all three of these goals I am going to use a visual timer.)

1. Sitting
   The absolute most basic, number one thing we need Cooper to be able to do is to sit. It is as simple as that. This means sitting at the kitchen table, at a restaurant, in a car seat, in a stroller, on a bus, or in our living room. Being able to sit means we can leave the house and be part of our community. My son is almost 7 and I can count the number of times he has sat on one hand. We need this and to date it is our biggest struggle and a huge contributor to the isolation we feel. It’s harder than communication and sensory issues combined. We also know that sitting is the first step in being present in situations. We need to be able to leave the house with our son. We need to be able to enjoy him. This goal is absolutely huge and lofty but honestly the most important one. My plan is simple. Every single night Cooper will sit with us at dinner, technology free. We will use incentives and rewards to motivate him to eat with us. Then two more times during the evening either Jamie or I will take his Kindle away and have him sit in a chair at the kitchen table. We will start with ten minute periods and build our way up to longer periods of time. This is going to be a huge challenge. It’s going to take a timer, activities and complete attention. The payoff is worth the work on this one.
   
2. Walking
   Each evening, weather permitting, I am going to take Cooper for a walk on our street. He is going to do this technology free. I am going to use reinforcers that he loves like little treats and pictures. The HUGE future goal is for him to be able to walk safely down a road or sidewalk. Right now I am simply hoping that he will walk a block with me.. Typical Cooper rolls, runs, darts into yards, falls, sits in the middle of the road, etc. It is very unsafe. Thankfully, our road is pretty quiet in the evenings and I will be right next to him. I’m also a huge believer in the importance of getting away from the technology and getting some good old fashioned fresh air and exercise. Cooper typically has no desire to be outside. It just doesn’t make sense to him. I understand. I honestly do. He doesn’t ride a bike, dig holes or play with toys. Outside doesn’t make sense to him. And maybe it never will. Right now the focus is simply to walk safely. This is another huge goal.
3. Minimize screen time
   First, let me say that Cooper’s Kindle is very important to him. It’s his security and enjoyment rolled into one. Different cartoons have taught him his alphabet, numbers, shapes, etc. He loves dancing to songs and showing the world his train videos. His Kindle brings him joy. Now in saying all that, his Kindle controls our life. We live and die by the battery and the wifi. When he is engaged on his Kindle he is not engaging with the world. We want Cooper to spend more time with us. We want him to play and be an active part of our family. That means less screen time. No, we aren’t taking it completely away and we are going to start small…for Cooper’s sanity and ours! The Plan: Each evening Jamie and I are going to take away his Kindle for two 20-minute periods and eventually build up to longer bursts of time. During the 20 minute periods we will have to directly engage with Cooper. We will start with puzzles, jumping on the trampoline, wresting and possibly alphabet games. We also see a way where we could get him interested in household chores.
   

These goals are huge. We know that. But we are to the point in Cooper’s life where we need to start thinking long term. He’s getting bigger and older. These goals will help us to leave our home successfully and be part of the community. Wish us luck!

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My name is Kate and I invite you take a glimpse inside the secret world of autism. I share our story on www.findingcoopersvoice.com and on Facebook at Finding Cooper’s Voice.