Leaving The House With An Autistic Child
I want to talk about leaving the house with my severely Autistic, six year old son. I think there are misconceptions about why we choose too and not too bring him places. I’ve been accused of hiding my son. Of being embarrassed of his behavior. I’ve been accused of letting the bullies win. On the other side, I’ve been praised for continuing to try and bring my super challenging son to stores. Everyone has an opinion.
Measures of Success
Last night we had a really tough outing. And if I’m going to be perfectly honest that makes five years in a row. The truth is we have never had a truly successful trip to a store with Cooper. Let that sink in. Never once.
Now, yes, you could say that I need to start smaller. Make the trips shorter. Maybe just park, walk in, and leave. Try going more frequently. All excellent suggestions. None of these will work for us at this time. We’ve tried it all. I have changed my measures of success for Cooper too. Sometimes just sitting in the cart is a win. Sometimes making it through the whole trip without knocking things over or throwing is a win. I know this. I also know it’s a work in progress.
In saying all that, I do everything possible to avoid bringing Cooper into a store. It’s that bad. But, and this is a HUGE BUT, this is 2017, and we are the typical busy, working family. There are times when Cooper needs to go to a store. There is no way around it.
We’ve Got a Runner
Let’s talk about a typical outing for a few things at Target. Cooper wants to be able to run freely through a store. We describe his behavior in a store as that of a wild animal that is finally freed from a cage. Cooper is a runner with no regard to safety or people around him. Wherever we need to be in the store he wants to be somewhere else. He expresses this by using his voice very, very loudly. Think a hair below screaming. And, lots of pointing and gesturing.
Because Cooper is a runner AND refuses to hold hands he must sit in the cart. When he is in the cart he typically throws everything out so nothing can actually go in the cart. He does a lot of kicking the sides of the cart and messing with the basket in the front. Think pushing and pulling it in and out. It is SO LOUD. He will last a max of 10 minutes sitting in a cart with his Kindle. That’s on a good day. Then, he demands to get out. He indicates this by standing and refusing to sit. And rocking the cart. And, the cart can never stop moving. At this point you are probably giggling because this sounds so extreme. It’s completely accurate. People watching us have to be so confused. If I refuse to get him out (or can’t force him to sit down) he will start head hitting. People really start to look then.
You may ask if we bribe. YES, we bribe. Cooper loves treats and my pockets are typically filled with them. But, in stories, he isn’t easily distracted from wanting to run and touch every thing.
Then it’s time to pay. Anyone that has been in this position knows the immediate feeling of pure anxiety. You are in a store. You need to buy something. You see a long line to pay. And sometimes you just leave because your child is causing himself so much anxiety and stress.
Cooper gets so stressed out in the check out line that he used to hit me. He would stand in the cart and try to climb out and if I refused he would hit me in the face. Not hard because he has a super weak core but it still stung. And it would shock me.
Now, I am his mom. I can handle it. People around us would get very, very confused. I am guessing they immediately think bad parenting. Or, maybe they do understand it is Autism. Who knows. Either way it’s pretty terrible. And yes, we do discipline Cooper. Hitting is not allowed in our home. But, the disciplining of a special needs child under the microscope of the public eye is a tough thing. Plus, we are in a hurry. I just need to get out of there.
It’s all bad. On the rare occasions I bring him to a store something extremely stressful always happens. I always vow to never do it again. Until I have no choice.
Our Family Trip to Cabelas
Last night Cooper’s behaviors were at a max. It’s been a long week stuck at home and Jamie and I felt adventurous. Sawyer was promised a new fishing pole for good behavior so we attempted a family trip out. We were armed with Cooper’s Kindle and treats. And per the usual, one of us was prepared to leave the store and go sit in the car with Cooper.
It was so bad. Sigh.
Cooper sat in the cart but against his will. He rocked it. Screamed. Threw. Grabbed clothes from inside the cart. Knocked things off shelves. He refused to sit. An even managed to half climb out/fall out. And he was off. Thank God I had my running shoes on. (Always prepared.)
He saw a tent (which he loves!) and squealed in delight. Within seconds our whole family was sitting in the tent. We let him have a little time out and quickly discussed our escape plan. Getting him out was going to be a nightmare. Jamie opted to pay for the pole and I took him out kicking and screaming. By the time I got to the car I was drenched in sweat. I felt like I had ran a marathon. Jamie arrived a few minutes later with Sawyer in tow holding his brand new fishing pole. Sawyer doesn’t find anything strange about this. This is his life.
As our family drove home from Cabelas Jamie and I were pretty down. It’s the same every time. We talk about how we can’t leave the house. What are we going to do as he gets bigger. The conversation kept evolving and landed on all the things we are missing out on. We see friends and family with young kids going camping, out to restaurants, to zoos, to movies, to Disney World. You name it they are doing it. They are having picnics and barbecues. We could never go. Not with Cooper. So, we don’t go. And damn it is hard to see the world passing us by. And yes, every family has their struggles. But, not like this. Not extreme safety issues.
We live our life at home. Seven nights a week. What we wouldn’t give to take both our boys on an outing. To actually enjoy a trip out for ice cream on a Friday night. It’s never happened. And I don’t know if it ever will.
We rode in silence for a while. We talked again about hiring someone to join our family and be with Cooper. And then both felt guilt about not including Cooper. But, what you have to understand is…He can’t go. Nor does he want to go. My sweet son is happiest at home. We aren’t excluding him in anyway. He’s just unable to go. That’s hard. It’s all hard.
What Do We Do?
We try to avoid stores. We go to parks in the rain. We go to beaches after they are closed. And, damn it’s lonely. The isolation is getting worse every year. I wasn’t prepared for that. For severe autism I guess. And for no one to truly understand what we go through. I wasn’t prepared to be at this level. And feel like no one else is there with us.
We aren’t going to give up. We will keep trying. I will go on the record saying that processing the emotional side of all of this is just as hard, if not harder, then the actual autism itself.
I’m starting to think some of my followers believe that I don’t take Cooper to stores because I’m embarrassed. Or it’s too much work for me…meaning I’m lazy. I want to tell you this is the farthest thing from the truth. I know my son’s limits. I may not like them but I know them.
I have felt shame for bringing my son to a store. I have seen ignorance firsthand. And then I’ve felt shame for not bringing my son to a store. I’ve been accused of hiding him and being embarrassed. None of these things are true. People just don’t understand. I am telling you this because just like me, you know what is best for your child. You know their limits. You know what they can handle. And, we all just keep trying.
Why? Because we have to continue to live in this world.
Our family is ruled by Autism. We see Autism clashing with the ever-changing world daily. And. oh my God. it is scary.