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.
Just found your blog and am I amazed by your strength and by how well you can put into words the thoughts I have that are so difficult to process.
Thank you for being brave enough to share what so many of us don’t know how to.
Not being able to essentially leave the house has been BY FAR the hardest part about my son’s autism diagnosis for me. We can’t do kid-centered activites because my son can’t handle it… and if he does handle it, it requires us to essentially “quarantine” him on the sidelines, making the outing no fun for anyone. And we can’t do many adult activites alone because my aging parents are essentially the only babysitters that can handle our son.
I had to put my blossoming career on hold to take a position that allows me to work at home full time so I can accomodate my son’s therapy schedule… in some instances the only time I leave my home the entire week is to check the mail or attend a therapy/doctor appointment. It feels like a life sentence of house arrest with no end in sight…
And nobody understands. NOBODY. I have been accused of all of the things you mentioned – not trying hard enough to accomodate him, being embarrassed of him, being “too lazy” to take him out, not parenting him effectively, etc.
This autism stuff is so flipping hard.
My wife and I know what you are going thru. Our 3 yr old son is level 2. He is nonverbal. And we, just like you are scared of the future. Thank you for sharing. It takes the edge off knowing we aren’t alone. God bless your family and definitely Cooper.
Thanks for sharing i also have a 5 1/2 yr old nonverbal autistic son. Hes also a runner and thrower and hitter and biter. Its so hard. He also has a max. Of about 5-10min at stores and like you said i know his limits and i will push him but i know when hes had enough so i will leave wherever it is that im at. People don’t understand its more for him than for me.
OMG!! This is my son!! Thank you so much for this article! I don’t want to get to a point where I don’t take him anywhere, but it is definitely something that I have to build up for and have a quick itinerary.
My daughter gets so tired to coming home bruised from grocery shopping. if he is in the cart like a kid, he has kicked her guts for hours. Now he is so big (95 pounds, 4 3/4 years old) that they put him in the basket where the groceries would be and yes, she hired a person to some with her (it’s Grandpa, but the state pays him to provide this respite care). For Grandpa, our boy will sit with his kindle in the cart so mom can do the shopping. Mom is still in sight, but not getting kicked. Also, if there is a need to exit the store, there is one person to pay and one person to watch the child. We also do a lot of Kid and other adult sit in the truck while Mom gets to go into store alone. That one works pretty good for us. But there is the loneliness of mom and grandma never getting to shop together since one has to be in the car. but we are getting there .
And no, it isn’t “hiding” your kid… HE doesn’t want to be in the noisy bright store – and you don’t want to get bruised and beatup from taking him there. I think that switches it to a self-preservation mode thing.
My son has more health related issues (seizures, feeding tube) that make it hard to just get up and go. Add onto that the lack of ability to keep himself safe, and taking him out is a real challenge. We concluded a while ago that certain “family vacations” will involve leaving my son at home, so at least my daughter gets some of those childhood experiences. This is a gut-wrenching reality. But, at least we have something of a choice and have loving grandparents who can travel to help us out.
First of all, you are a beautiful woman with a lovely family (well, 2/3, I haven’t seen a pic of your husband yet ?).
Second, I would never dare giggle at what you are going through. I dealt with 3 RAD’s (reactive attachment disorders) for 5 1/2 years. My story is different, but I recognize your pain, and your courage, and your love and willingness to put Cooper’s Need’S first. Try and verbalize that before you visit the store or anywhere..
Third, List the pros and cons FOR Cooper. To attend xyz.. Carry thosereasons as a shield before you. When people make ANY disparaging statement, apply the sword of discernment. If they are helpful, great! If not, IGNORE, IGNORE, IGNORE. Those people don’t own the world. They aren’t your boss. For the most part, you can brush them off as an annoying insect, flying around your head, buzzing in your ear. The more you practice this, the easier it will become. It will benefit Cooper in ways you may never see. It will enrich Sawyer’s perspective on compassion, humility, defending the weak, and the strength of doing the right thing. What better role model than you with his brother?!!!
Fourth, keep those business cards I suggested in my comment of the video about the girl/family at disabled child’s’ park. (If you cant find it, let me know!) Blessings to you and your family!
Is Cooper able to learn simple sign language? My daughter’s have used it with all their babies. The youngest are 19 & 17 months, and can communicate some of their needs non-verbally, just through signing. If it works, even Sawyer could learn to better communicate with his brother. Just a thought. ?
How would Cooper react to something like Caroline’s Cart? Is that a possibility at some stores?
I want to tell you that YOU ARE NOT ALONE in enduring, fighting, trying and feeling this whole wild, wacky world that comes with autism. My son Alex just turned 12. He is verbal but the rest of it- the running, the sensory overload in EVERY SINGLE SITUATION- rules my world. We have had people say he has Aspergergers but his diagniosis is severe autism and every single day I know it, feel it, love it, hate it, live it. My older children have grown apathetic and resentful because they feel slighted by what my son needs are. It is so hard to do anything as a family because the unpredictability makes it very challenging to say the least. Grocery shopping, or shopping at all is a real challenge for our family as well. I never achieve my goal – even with my list in hand and strategies and preparation- i always leave without something because i had to rush to go before everyone in the store learned who we are! It is embarrassing and it is hard and anyone who has not been there has NO IDEA WHAT IT IS LIKE! Alex has gotten better with ABA and time and lots of exposure. My husband is military and i have no one to leave Alex with when my husband is deployed. I had to take Alex with me. Things that helped– go first thing in the morning when the stores are quieter and less populated. On a weekday. Bring head phones. There are times STILL at 12 Alex is in one cart and idrag a second cart for what is needed. There is no leisurely shopping anymore. Same with meals. I eat like a prisoner- so fast! so no one takes my food! ha! Its nuts how my life has changed but you are doing everything very well and your transparency for the world is so genuine and validating to those of us who have similar shoes on. It is not easy but God chose us cuz He knew we didnt need easy! We have hearts bigger than most and we have been blessed by having kids with challenges! Keep on keeping on for Cooper, you, your family and for all of us! you matter!
I’ve been reading up on getting an Autism Service dog. They are usually big dogs so they can work well with runners. It’s hard to move a golden retriever or lab if they don’t want to move. And they are trained to stay. They also can have a calming influence on the autistic child/person. Like anything else, everything doesn’t always work with every situation, but here’s the site of one. http://autismservicedogsofamerica.com/
This is our life too. It’s like we were placed on this planet but never given golden tickets to get in. I wish I could tell you that it gets easier, but in our case, it hasn’t. He continues to grow physically, while his dad and I grow increasingly burnt out. Hugs and understanding to you all.
Just stumbled upon this and wow! Could have written it myself. All your feelings about the isolation and the shame and ignorance hits home. I was going to also ask if your Target has the new Caroline’s Cart? It has a 5 pt harness system and it has been a literal Godsend for our shopping trips. They used to sound like yours with the seat smashing and the standing and throwing things, but the new cart has been amazing and makes my son feel cocooned and safe. I will be eagerly following your journey and hope that you know that there are so many other moms out there invisibly locking arms with you on this seemingly lonely journey.
Hang in there! It has gotten so much better with a lot of work for us. After 8 yrs biomed &4 yrs ABA, I’m happy to say I finally had a nice trip to Costco with my almost 11 yr old! Key for him is iPad in basket & one hand must push. (Thankfully more places like Sams have order online /pick up in store. Whole foods has free personal shoppers. ) You are an AMAZING mom! Thanks for opening your heart to us! Most of what you have shared is identical to that age in our lives. (My NT girl 2 yrs younger)You’ve made me cry many times. And opened my eyes some too. Your boys are blessed with a wise strong mama! You got this! Patience. Adj expectations. But there will be balance when you follow his lead & your heart!
Thank you…I found this sight because I have been struggling with taking my severely autistic son out…its not easy…he does really well sometimes so people don’t realize he’s autistic until being four years old, if he talks at all, he babbles or makes sounds, he does have many random words when he wants something enough to use them…but leaving anywhere is a nightmare…its an unavoidable meltdown…and my two year old starts in too…its extremely stressful…I just wanted to say…I adore my son with autism…Its people in public who stare…or say “oh…you have your hands full” or insult me with my children…that is extremely upsetting…I like going places and being sort of left alone like everyone else…its all the unwanted negative attention, lack of acceptance, compassion- the assumption that i am bad parent and somehow don’t know how to manage my child(ren) that is so disheartening….we do montesori at home 🙂 we also have kindle my son likes thomas the train…My daughter who is now 21 years old, took college classes at 16 years old, and works full time now, had severe meltdowns many times for lack of communication abilities -very verbal just had a difficult time to communicate her needs easily…it was much harder to get a diagnosis for autism when she was little -they said it was behavioral…she was diagnosed as a young teen….she has turnned out well overcome so much..and I am really proud of her….Best not to underestimate the potential of an autistic person…they might surprise you! mine always do…
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