The good news is, after several years of searching for an ABA program that is run by qualified, accessible behaviorists, I finally found one. The bad news is, after several years of searching for an ABA program that is run by qualified, accessible behaviorists, I finally found one.
I guess over time I’d built a picture in my head of what this sort of program was supposed to look like. I would drop my screaming, undisciplined, stimming and violent son off every day at 7:00 a.m. and retrieve him (learned, but exhausted and ready for bed) at 7:00 p.m., for about three years. Of course, we’d have ups and down, it would take time (ergo the three years), but the miracle workers I employed would turn things around for him and our family and we’d have him well on his way to a mainstream classroom in less time than it takes to get a college degree. Silly, silly mommy.
The end goal of a mainstream environment remains, but our real program involves no such outsourcing. I am as much a part of the program as my son with autism, Noah, is. All the incredibly stressful public excursions we have avoided since he turned three are now part of our daily routine.
This is mostly my fault because when the owners of the Academy of Excellence in Learning, Lindsay Rice and Stephanie Beaulieu, asked me to outline his behavioral history, I spared no indiscretion. There were pages of “issues” that needed fixing. His horrific behavior at Target topped the list. “Great,” they said, “We’ll start there. When can we go?”
What? Me? I thought. He is a terror. A terror. He will rip things off the shelves; he’ll run and scream when we pass the food. Nope. Not doing it.
Thankfully my higher self conquered my lower discourse. They arrived at Target, and per their request, I hid behind displays and darted in and out of aisles, unbeknownst to Noah. This mission was about observation.
The first five minutes were relatively peaceful. I crouched behind purses as they strolled the main drag passing the clothes and greeting cards. Noah even pushed the cart! I was starting to wonder if I was somehow causing his behavior. Did he really have autism after all? I snapped right out of my delusion when they passed the food and he dropped to the floor screaming. Attempts were made to discern what he wanted. People rolled their eyes and stared. The distance and anonymity did nothing to contain the familiar heart-pounding shame and rage I’ve felt since the day these episodes began.
Shame, because despite my best efforts, I’ve never been able to successfully handle his outbursts. I’ve left carts full of groceries too many times to count because I know how quickly a scream turns into a bite that turns into a slap that turns into a kick. And rage, at how cruel and judgmental people can be. I watched painfully as passersby snickered and employees sighed and pursed their lips. When he dropped to the floor in front of the popcorn a woman in possession of a nasty frown yelled, “Maybe you should just give him a cookie?” Undaunted, Lindsay and Stephanie quite literally laughed them off as they concentrated on what Noah was trying to communicate. “What do ya need, dude?” They sweetly questioned amidst the growing public tension. It was as if he was the only person, besides them, in the whole of Target.
He wants to eat! He never gets junk food. He’s a kid! He wants the garbage food everyone else gets to eat! I began to sweat. I felt hot tears forming. How much longer were we going to do this? This is torture! I tried to drill my thoughts telepathically into their smiling heads.
His meltdowns, their efforts to interpret them, and the obvious and cutting judgment of the consumer public ensued for approximately an hour and a half. Time and time again, he tore off running away at top speed, knocking things off shelves. He ran into people’s crotches. All the while some folks pretended not to notice, some pointed at him and laughed, others muttered about bad parenting under their breath.
At checkout time Lindsay cheerfully instructed him to put the items on the conveyor belt. Behind him a large, heavily made-up woman crammed into a white linen outfit did nothing to hide her revulsion. Her eyes were like saucers as Noah ceremoniously dropped and rose in front of her. He touched one of the plastic items she’d placed on the belt. She hissed at him as her hands flew to her hips and she launched optic daggers into Lindsay’s temple. I wanted desperately to say something to her, and the entire slack-jawed checkout staff for that matter. That’s my son. MY SON! You have no idea what has happened to him, what he’s been through! How hard this is for him! Do you think he is acting like this on purpose? This is NOT. ABOUT. YOU! Instead, my sweating, throbbing body could produce only a squeak. Once the items they purchased were bagged they began a five-minute endeavor to get Noah to push the cart back to its home, approximately three yards from checkout. It was then that the Linen Lady broke out into a full stare. Her eyes remained fixated on my screaming son, as her head shook from side to side and she muttered something to the checkout clerk. He smiled, kept his head down, and focused on his job the whole time, unlike his colleagues, who had all left their posts (three in total) to come stare at my son (hands on hips for effect) along with the rest of the onlookers.
Finally, we reached the parking lot. Lindsay buckled him in and we compared notes. “Not as bad as last time!” she chuckled. Stephanie agreed saying that, although he dropped a few times, there was more fleeing than dropping, which is a step up from the apparent repeat tantrums he’d had previously. I listened as well as I could to their scientific assessment and their recommended course of action. Turns out, we’ll be doing this over and over and over again until we can get his behavior under control.
They headed back to the school with Noah and I sat in my hot silent car assessing what had just happened. Predictably, tears ensued. I have so much anger and guilt over what he endures. If I am honest, I was every bit as annoyed by his conduct as those patrons were. Why is every single leg of this journey so hard?
Because children with autism, and we, their parents, are here to change the world. That’s why. Struggle is part of the deal. I stopped feeling sorry for myself and started thinking about what Lindsay and Stephanie said. More importantly, I realized while all this judgment was going on around them, they were the very picture of calm affability. At one point, they got him to play catch!
They were reaching him. More tears, only now—of gratitude. I started the car, but cut the engine as a thought formed. I cannot control the behavior of others, but I can set expectations. I can’t keep people like Linen Lady from staring, but I can let the people who work at Target (and who frankly, should know better) why he is acting this way. I could educate them. I could tell the truth. I marched back into Target, my heart pounding with the anticipation of confrontation. I grabbed a bottled water and lined up to pay with the checker who’d kept his line moving with a smile.
“Hi, how are you?” He greeted me cheerfully, but without eye contact.
“Fine, thanks. A few minutes ago there was a little boy in here behaving very badly. I’m his mom.” The clerk looked up, but not directly at me. Didn’t matter, I came here to say my piece. “I want you to know he suffers brain damage as the result of vaccines and we are bringing him here hoping that someday he will be able to shop with me again.” He put his hand to his heart and sighed. “We are going to be coming in here a lot. Could you please let your colleagues know?” I finished, ready to throw up.
“Okay. Yes, I’ll tell them. I really like your necklace.” My hand rose to my neck , “The puzzle? Yes, my son has aut—”
“Autism.” He cut me off, looking in the general direction of my face, “I know. So do I.” We shared the biggest smile that could possibly pass between two strangers with a shared reality. In this hostile environment we found one of our own. This steadfast, consistent, hard-working young man (the ONLY employee in the bunch who displayed situational dignity and respect) was one of US. We are after all… everywhere. I smiled, thanked him and felt light as air as I walked out. Hope filled my heart. I also thought of the perfect words for the staring, commenting, hands on hips public:
“My son suffers brain damage as the result of a vaccine. If someday you are the victim of a doctor’s apathy and your voice is taken, I hope you are shown greater mercy than you were capable of extending to my son, today.”
Since this day I have been thinking about Booty Kicker’s post on taking our kids to church. When I first read it I was fired up. My father-in-law is a deacon! My neurotypical children attend school there! Heck yeah! But for all the reasons I just wrote about, I have dressed Noah, readied our family to head to Mass and chickened out. This day and this experience have given me the courage to stop dividing our family. We are one. Period. And, we are ALREADY everywhere. We have family members in every neighborhood, every church, mosque, synagogue, grocery store, mall, restaurant, park, library and school. EVERYWHERE! It is time for us to take our children out into the world. It’s time to STOP BEING AFRAID OF WHAT STRANGERS THINK . A trip to get toilet paper may be a chance to help a concerned grandparent connect the dots about their grandchild’s “strange” behavior. Returning library books now becomes an opportunity to help the staff understand and possibly develop programs specifically for children with ASDs. Share what you KNOW. Become a part of change and reinforce THE REVOLUTION. Always, ALWAYS TAKE THE RISK! You never know who will be helped and who will be healed — maybe, just maybe, it will be you.
~XO, Lisa Joyce Goes (The Rev)
For more blogs by The Rev, please click here.
Lynn! Thank you so much for that beautiful question. I think it depends on your observation of the situation. If you see the mom truly physically struggling, sometimes just offering help by saying “Tell me what to do and I will be happy to help.” Can really be effective. Most moms are overwhelmed by that point so just having physical back up, so they do not have to leave the groceries they’ve paid for, or a younger child unattended–just knowing another adult is with them observing what is happening and not judging them? It’s HUGE. Then again, some moms are so beyond their ability to reason they may become adversarial even to the calmest and kindest effort of intervention. IF you receive a hostile response, you still know you acted out of compassion and that is what all revolutionaries hope to illicit in the mainstream! We just want understanding and compassion for our kiddos and families. Thank you again for your comment.
As I was reading this blog and read what you said about people staring at your son I was wondering what do you think the response should be from the public? If I was one of those patrons at Target how would you like for me to respond? I don’t know much about autism but I am trying to learn and educate myself.
OMG!!!! Did you read my facebook post today?!? If not, please do so. I live my life now with the “there’s a reason for everything” I needed your words today more than ever! Thanks for the stitches because my heart was so broken this afternoon. Who knew a trip to the grocery store could break a heart? We know…but I also know that I can come here and feel complete understanding and leave with a glimmer of HOPE and a glimmer is all I need, I’m not greedy. Thanx Lisa and my hope for you is that it gets easier and easier. xoxoxox
We have made a pratice of taking our son everywhere with us since he was but a small tyke. He is 19 now and a real joy to go places with … The effort was worth it … because our family gets to enjoy going places … ordinary places all the time … And now because of those years of hard work … we also get to go to extraordinary places and truly enjoy ourselves. We went to the Grand Canyon this past weekend and all of us … including our son … loved the experience. It was a joy to see the canyon through his eyes. At one point he said, need a break … too scary. Years of work to get us there … but I took him back to the car and enjoyed a treat together for him telling us what was wrong … and then he was ready to proceed on … Upward and onward. Forget the stares, the comments … and teach your child to love his world. It will be worth it all!
Bravo brave one!
My son goes everywhere with me, my buddy. But we gave up on the beautiful people’s country club church with the old ugly attitudes. Still searching, but know theres a place for us!
love this, lj. keep preaching. i could read your writing all day long.
I just wanted to voice my support. I have no words, just admiration. xoxo
Lisa- I take Kale everywhere with me, always have. I have only stayed home from a few family parties because I didn’t want to deal with the food issues. Sometimes, I don’t have the energy to deal with the 12 foot desert table that he cannot go anywhere near. Anyways, most trips to Target, grocery store, etc. are just fine. Some days, he has his moments and we carry one through the store. I do not give into the behaviors and he has learned this over the years. I do not care if people stare and if they do for a certain amount of time, I usually snip…He has Autism. Do you have any questions???? They usually give me that “oh” and walk away or they say “no” in response to my question!
We have only vacationed to many different waterparks over the years, because I know that environment is “safe” for Kale and that he will love it. I have decided that will change next spring break as we venture to Disney as a family for the first time. I think we may even fly!!!!!! UGH! The thought makes my stomach twirl…but God Damn It, my kids deserve to go to Disney and people on that flight will just have to friggin deal with the vocal stims for a few hours!
You can do this!! Your family deserves to make these trips out in the community together! You are a strong mama, woman and advocate! You and Noah will be successful!
Get to Disney, Sadie. The best.trip.ever for us, because of the autism pass.
Love you, L.J. This is so inspiring. This is what we should all be doing. I hope you went to Mass today. xoxo
Thanl u for posting this!!!
Nothing but <3 for you and your sweet boy. He'll get there <3
God bless you, your son, and your family.
Wow! I stumbled upon your blog and just want to thank you for your strength and your voice to help other families and travel down this really hard road. Because of mother’s like you, the facts of Autism will be public knowledge and all your hard work will help to educate so many. You are a hero in my book and your story is inspiring. Thank you for your strength and beauty!
Bless you, Lisa. Never a word you write but makes me want to weep – in sorrow, in pride, in hope… God give you strength, lady. Noah won the lottery when he got you for a mama x
Ahhhhhh….the dreaded floor drop…..that’s one of my fondest memories….although I couldn’t afford Target (especially in case she broke something)…I was a regular at Goodwill. I figured the premise of Goodwill was to provide jobs to people with disabilities..so..they of all people wouldn’t ask me to leave because my daughter was “disturbing” the other shoppers..besides I was a “regular” there…but they did. I personally didn’t care how many crayons she ruined..I bought them. The thing that really got me was that damn piano. At that time my daughter couldn’t put a sentence together but responded to music. And they had a used piano for sale with a sign on it “Do Not Touch”. Of course, she wanted to go to GW to play with it! And, of course, being a stay-at-home single mom at the time I could never afford one or lessons and besides…how could I find someone to teach her how to play piano when she couldn’t “talk”… And so out of guilt I would take her there so she could “play” and I could get out of the house and shop. But the store manager approached me very nicely one too many times to keep her away from the piano and so I stopped going there. I had to because I couldn’t explain to her why she couldn’t play with it not because I was almost thrown out of the store. Years later I went back with my daughter and the same manager came up to us to say hello and “we haven’t seen you”…and I will always appreciate and remember the fact that this store manager gave me a place to go..a place to start…to go out in the world with my daughter…she put up with the screaming floor drops….it gave me the courage to keep on taking my daughter out, making her do “normal” things regardless of the stares…floor drops in the airport and on the plane itself were my personal favorites… and today she is 13 years old and I can take her anywhere…..she helps me at the supermarket and when we go to Marshall’s she heads right to the shoe department just like a teenage girl should! At the time I thought the screaming floor drops would never end…NEVER GIVE UP. Love you LJ.
I have often said that I don’t care what people think of me or my son’s behavior. I have only had one instance of a cruel old couple that was rude to my son in the grocery store and it took all of my strength to reply in a respectful tone in front of my children when I really wanted to punch them both in the nose. This last week, when my son had another meltdown in the grocery store and there were many, many stares, I realized that I truly did not care. Let them stare. My kids have to eat and we are going to the grocery whether people like it or not. We are everywhere and the numbers are getting higher and higher everyday. We have to be the ones to educate the masses that this is happening and society needs to learn to adjust to us. Keep fighting Rev! <3
A little education goes a long way. Staples could very cheaply print out business cards (to hand out to future linen ladies and judgemental employees) that could say something like:
My son has autism as the result of vaccine injuries, and an important part of his therapy is to come to public places such as this, with trained behaviorists who accompany us today. They are helping him deal with the stresses that typical children can easily tolerate. The behavior you’re witnessing is not any more acceptable to me than it is to you, but we can’t change it by keeping inside his house. Your understanding is appreciated. Thank you.
Love ya, Lisa, is all I can say.
Just found your site and this first blog made me cry. I have four children with disabilities, two of them on the spectrum. Those being my oldest and youngest boys. The first half made me smile as I remember starting ABA and thinking the same things..”they want me to do what!?” LOL What got the tears going was when the employee turned and told you he had autism, too. We ARE everywhere…but too many allowing society to coral us in to hiding. My oldest with Aspergers could be that young man at target as he is finally ready to get his first job at 16 and it has been a long road getting here. But every time I think if that hard fought journey and how I never thought it was possible to be where we are today every time I look at my youngest screaming curse words at the top of his lungs and throwing things around the store. I recently has a shirt made up for my littlest . On the back it has a quote (from LadyBird Johnson of all people 😉 “Children are likely to live up to what you believe in them” and on the front, above a pule ribbon it says in all caps BELIEVE IN ME! Sometime I think that he needs to wear that message to remind me from time to time as much as the rest of the world. But so important.
sorry abt all the typos on my phone. That was a puzzle ribbon 😉
The Great Commission
“go, teach, baptize, forgive and make disciples”
What an inspiring story. I have not taken my son Peter to certain places (like church) because he yells, and he used to run away a lot. Having twin sons with ASD and two completely different sets of issues has always been very challenging. I don’t want to hold back my son Spiro, but at the same time there was a safety issue with Peter, so I wouldn’t take them anywhere alone. I must admit, we were stared at just recently in a McDonald’s washroom. They have those really loud hand dryers with the turbo jets and Peter started holding his ears and getting very upset. This woman stood there for what seemed like hours, with wide eyes and this accusing look, just staring at him. At the time I didn’t want to even try to explain why he was acting like this, but I finally looked at her and said “Do you need to get by?” and I guess she wasn’t expecting that and she then walked past us to the stall. Thank you for your post. I needed to hear this as I know I have been guilty of weighing things out before going somewhere, and trying to anticipate whether his behaviour will be embarrassing in certain situations. I’ve never liked drawing attention to myself and I think this is more about me than him. I need to stop worrying about what other people think, period.
Dear Rev,
You are always in my heart. You are so on the right path. His behaviors are that if bacteria/parasites/virus/candida…they are not him. Those pathogens will die and leave his body and he will be fine. The therapists will mold him while you treat his biomedical issues. Good for you that you are finding the strength to defend you, your son and the rest of us. The sooner socienty realizes that there is an epidemic and it ain´t H1N1 that maybe, just maybe they will get up in arms about it. One can only hope. Everyone must see us and the struggles that autism causes. That will make people more aware of the how this happens so hopefully one day…the governments of this world will not permit their citizens to suffer autism…Autism is AVOIDABLE, TREATABLE and CURABLE. You can do it, Rev. We are with you. And we are only an iphone text away at any given time. Hugs and love….
The last time our family went to Target together, for the first time in months, one of the boys fell out of the shopping cart and still has a bruise on his face two weeks later. It is so hard to figure out who we are doing a favor by keeping them home – the other shoppers? Ourselves? I thought it was them I was protecting as I don’t care about what others think. We already do not eat in restaurants as to not disturb other diners. But then reading your piece reminds me that it is my children that are being sold short – they need to learn how to handle things like shopping so they can be a part of the world. I guess that I am going to have to learn how to cope, although my excuse is that I have 2 children at the severe end and it is just almost impossible to handle them alone in public. Add in their higher functioning sister and my oldest who yells at them all to be quiet every 10 seconds and I just want to order everything online or shop while they are in school. It is too much for me, nevermind the other shoppers. Thank you for sharing and reminding me what is important.
;@)
thank you for this beautifully inspiring piece. all teared up. and raring to go!
Thank you so much for this, I don’t know whether its just hitting so close to home, or because I’ve been up since 5:30 am, but it brought tears to my eyes. I can really relate. Its great advice.
This is the ONLY type of autism awareness campaign that will ever make any impact. Take your kids out in public. Let the world see the reality of 1 in 88. Then, when they are having to deal with the fraction of what we deal with every day, let them tell us that our kids were the expendable sub class justifiably sacrificed for the greater cause.
Rev, you are and will always be my hero <3
You said it, Killah.
Damn woman. You got me again. I’ll be taking my little muffin out more often. I usually avoid it. Not because she pitches fits. She’s usually very manageable but the wheelchair, the stares, the sheer effort it takes to do all that is, with three other kids in tow, daunting. But you know what? F-it. It’s time to stop obsessing over things I can’t change and work with the things I can. For the record, my mouth never stops running about her. I tell anyone who will look at us. 🙂 xoxoxo
can’t change *it