What I Want You to Know...About Parenting A Child with Autism
Be Inspired is all about building meaningful connections between badass women. I looked around at my personal tribe recently and realized that my group includes some of the badassiest of the badass. Each of them has sneaky superpowers that give them the ability to deal with everything from the monotony of the daily grind to some of the hardest things that the universe can throw at them. This is the first in what will be a series that I’m titling “What I want you to know…” I hope to give some of these women a platform to educate the rest of our community on a topic that has dramatically affected their lives. Usually a topic that has the power to be misunderstood or make a person uncomfortable to discuss.
Allow me to introduce you to Angela. She’s in her early fifties and celebrating her 25th wedding anniversary this year to her husband Doug. She has twin boys, John & Jacob who live together in an apartment nearby and a son, Luke who continues to live at home. I first met Angela in a kettlebell class at the YMCA in the Twin Cities. She was loud and sarcastic, full of energy and tough as nails. Absolutely my kind of person. She never had any aspirations of becoming a corporate powerhouse. Angela wanted to be a Mom. She would’ve had a house chock full of kids if she could.
Angela started her discussion with me by saying that the twins were three months old when she found out she was pregnant with Luke. My jaw dropped as I pictured having three children within a year. I had not realized that the boys were all so very close in age. I could end the story there and we could all marvel at the feats of strength and patience that must have taken place in that household awash in a sea of diapers and graham crackers, Play-Doh and Legos.
“I didn’t have time to think during that pregnancy because I had these babies. What I remember the most is feeding the boys and just gagging and dying and running to the bathroom to puke and running back and feeding them and freaking out because I’m leaving them in their high chairs but I just can’t keep it down.”
The twins were born via c-section after a long labor in a teaching hospital with an audience. It was an unpleasant environment at best and Angela was wise enough to tell her doctor that she needed Luke’s birth to be different. Luke came into the world nearly 2 weeks after his due date at 7:30 in the morning with the sun coming up through the hospital’s east-facing windows. A big baby at 9 pounds 13 ounces, Angela knew something was different immediately because Luke couldn’t eat. He would projectile vomit everything. “I don’t know how that kid gained weight”. He didn’t sleep and was a colicky baby. I asked Angela what the doctors told her about Luke’s early days and her response surprised me, “They told me I was stressed out. That I was a stressed out mom.”
Roughly a week after his one year vaccines, Luke began to have tremors. “It was like when you’re cold and you shiver…” She kept careful track of the consistency of these tremors and took him to the pediatrician. It didn’t happen while she had him in the doctor’s office so the response was again that Angela was stressed out. He couldn’t eat, he had terrible eczema and he never slept. “to this day, he has his ‘restless nights’ where he doesn’t sleep. As a baby, it was terrible. He never slept and I had these two other babies who by the way, I don’t know if you forgot about them, but I still have them…”
“And the doctors were just blowing me off. Blowing me off, blowing me off, blowing me off.”
Doug was feeling the pressures of having Angela stay home with the three boys while he used his worker-bee tendencies to provide for the five of them. He would work all day and then come home and take the boys while Angela ran the errands, cleaned or took a shower. “He was the one, when Luke was screaming, screaming, screaming at 1 am would load him into the van and go for a 3-hour drive so that the boys and I could sleep. How he did that and worked all day…”.
Things got worse. Angela was feeling isolated because it was increasingly difficult to bring Luke anywhere. She desperately wanted the boys to go to ecfe preschool, but it was very difficult because the sibling care room couldn’t take high maintenance Luke. Shannon, a friend who happened to be a nurse approached Angela and acknowledged that it was important for Angela & the two older boys to have that time together. She offered to take Luke on a regular basis for a year to make that plan a reality. One day when Angela picked up Luke she was met with a difficult discussion. “I need to have a conversation with you, but I don’t want it to end our friendship. Luke exhibits some behaviors that concern me. I think you should take him in.” Shannon wasn’t telling Angela anything she didn’t know but normally unflappable Doug’s response to the suggestion that there might be something wrong with their baby boy was anger and denial. “He got super mad at me, super mad at Shannon”.
Luke was 2 ½ when Angela brought him to Minneapolis Children’s Behavioral Clinic for a full evaluation. “I’ve been to every clinic in the world with him, Minneapolis Children’s was the first place that no one was dismissing me when I’m telling them about all of the shit he’s doing or not doing.” The diagnosis was that he was “Classically Autistic”. “It was a gut punch but it was also a little bit of a relief because there was a reason for all of the things I was seeing.”
“I had to get over being jealous a lot. I cut a lot of people out when Luke was diagnosed. I couldn’t be around people who had typical kids his age. I just couldn’t. I felt like they’d complain about something and I’d sit in my car and sob and think ‘if only…’”
“I turned in to research Wonder Woman. I read everything. I flew around the country to different conferences trying to figure out what was cutting-edge, what would work for him.” Everything Angela learned pointed toward super intense ABA Therapy (Applied Behavior Analysis). They were assigned an angel of a case worker. She was near retirement but was able to guide Angela through the first couple of years of this new diagnosis. She advised that they apply for Waivered Services immediately so that he would receive county, state and federal funding to help him with expenses moving forward. It took a couple of applications but Luke received the waiver that they needed. The family would spend up to $1,000 per month for therapy and care until the age of 18, but Luke would get assistance when he reached adulthood which was important. In home therapy began at 8 in the morning and would last until 5 in the evening with a team of revolving therapists coming and going and it was required that an adult be present in the home during these hours. Luke was getting help but Angela and the boys were even more tied down.
One of the things that was approved was a PCA to assist Angela. When Luke was 3 years old, Mary entered his life as his PCA. Twenty years later, she remains a lifesaver to the family. “They go do ALL the things!”
In a search for self-care, Angela started running. “I survived by running!”. She could do it alone and the therapists, who had become like family, didn’t care if she left long enough to go for a short run. And since they often used the twins to do therapy with Luke, it was a nice, solo escape.
The therapists would make him do everything he didn’t want to do. There was an entire winter when Luke would refuse to wear anything but one particular shirt. Luckily it was a hand-me-down from the twins so Angela could cycle two of this same shirt through the laundry and back on the boy. “I’ll never forget the therapists making him take off that damn shirt. And when he was able to talk, some of the things he would say…” He would fire his therapists on a regular basis. He would work hard and then would be allowed to play with his favorite things. The family was part of the therapy team and there were strict rules to be followed.
“I feel tremendous guilt over how I parented the twins when they were little because I was barely hanging on.”
In her research, Angela discovered that public schools would not let Luke’s therapists go to school with them. They had their own paras and wouldn’t accept the therapists who had become like family. So when it was time for Luke to start kindergarten, the family chose the private school of St John’s and his staff went with him. “The worst thing we ever did was pull him out of that school and put him in public school”.
When John & Jacob transitioned to Irondale High School for eighth grade, Luke transitioned as well. “Kids are cruel, mean. It was the worst bullying we’ve ever had.” Boys physically injured Luke on the playground, they would write inappropriate messages in his beloved yearbook, they convinced him that one of the female classmates had a crush on him and in high school they stole from him.
“As a parent you struggle because if you advocate for your child, you’re a pain in the ass but if you don’t, they don’t get nearly what they need. I have worked in a school for my whole life so I get it. I’ve seen both sides. But I had to decide that they weren’t going to be my friends. I wanted to work cohesively with his SPED team but I finally decided ‘fuck it, I’m going to just TELL you what he’s going to get.’ I never expected more than what we were putting in at home. I never expected anything that was unrealistic. I just expected him to be able to go into the lunch room and eat lunch without kids taking his food, dumping his tray, making him sit by himself”
“After that day, Nikki (a friend working at the school) texted me and said ‘Angela! Luke is like P. Diddy at that school. He has his own personal umbrella holder. They’re crazy about making sure he has his stuff.’ I won but I had to go up there and be a nutjob”
Luke did mainstream language arts and mainstream math for most of his school career. He walked at his school graduation but he didn’t technically graduate. He had two years of additional schooling (CLT) after high school to teach him how to ride public transportation, go grocery shopping, exist in the world.
Everything changed after graduation. Angela suffered an injury and could no longer run. The big boys were graduating from college and permanently leaving the nest. Luke was finished with CLT. It was a dark time for Angela. “People don’t understand – Luke being disabled, I can compartmentalize that and I will forever be his protector, advocate for him and that is that. When my big boys left, oh my god. My whole life left. They were the life in my house. They did all the things that kept me in a ‘normal’ state. They were my helpers. Nobody gets that. Everybody thinks ‘oh yeah, everyone goes through the kids going away to college’.
Recently, Angela, Doug & Luke moved to a new home. Luke was a very big factor in the selection of this particular home and neighborhood. Their home is large and very comfortable with plenty of space for the young man to claim as ‘his own’. The area is secluded and Luke can walk around a pond which gives him some much needed independence. There is a neighborhood pool and he loves to swim. Angela knows that this house will be home for Luke for a very long time but even this decision has caused new problems. She has found in searching for a new PCA to assist Luke in preparing for and getting to work that the quoted hourly rate for this service goes up as soon as the prospective employee understands that their home is located in a neighborhood that is perceived as being affluent. A PCA that she thought was going to be great (he’s a 30something male working his way through a master’s degree) turned out to be a “complete weirdo”. “I didn’t like that this man was coming into my house. I didn’t like that I was waking up in the morning and he was already there…I ended up firing him but it took a year…he was stealing from me! Not money but pantry items! I know he was. I started counting my toilet paper! What is wrong with me?” All of this led to a job change for Angela, finding a part-time job in a different school system working hours that were more conducive to assisting Luke in the mornings.
Luke has had a handful of jobs that allow him further independence, add to his self confidence and give him a sense of purpose. Recently he was fired from one of these jobs and once again, Angela was called upon to handle the situation. Luke’s manager called her to his office to let her know that Luke’s services would no longer be needed effective nearly immediately. When she suggested that she could hire a new job coach to assist Luke in his duties, management made it clear that his mind was made up. Luke was devastated.
Angela had quit her job, got a new job to be home for Luke’s job…and then he lost his job. “But I’ll be honest, I am so glad to be home with him in the morning. I hadn’t realized how much I hated not being the one to get him ready in the morning. I have standards, you know? I wash his hair, make sure he looks cute, makes sure he has cute clothes, puts his cologne on…”
Luke volunteers at the Shoreview library on Fridays. He loves being at the library and he does a great job. “I didn’t know if they really cared if he was there. It was one of the things that he got from CLT. I had kind of been blowing it off because I’m the one that has to drive him everywhere. I get a call at work from the library. It was his manager asking if Luke no longer wanted to come to the library. I started laughing and said ‘no, actually, his MOM doesn’t want to come any more.’” The response was that they had really been missing Luke and his particular talent for keeping the children’s section of the library ordered. “Got the message. Luke will be back!” Here was someone telling her where her son’s talents were genuinely recognized and appreciated.
“Here’s something to whoever reads this. Stop asking if he’s ever going to live on his own! I don’t know. I hate that question. Very rarely do I feel like people really care when they ask a question like that. I feel like it’s asked like a curiosity, freak-show kind of a thing….how the fuck do I know if he’s always going to live with me? My answer is usually pretty snarky. ‘yup! He can live with me until the day I die and then that house is going to be his and he can continue to live there!’ I never want him to live anywhere else.” Angela envisions purchasing a home for Luke and his two friends (all of whom Mary works to care for) with 10 acres. “I have to be real – I’m not living forever.” Angela gets super jealous when everyone else is buying cabins and doing other things as she plans for an uncertain future for her son.
“I would tell my younger self to not ignore my intuition.”
Angela looks back on her life, and Luke’s “I wouldn’t trade any of it. I really wouldn’t. I mean, I have people in my life that I would’ve never had. And I think I would’ve been someone I wouldn’t like. I really do.” And if she had it to do over again, “I would tell myself, ‘calm the fuck down.’ I would lighten up with Luke’s therapy a little bit and just lived our life. I would’ve stopped therapy sooner and put him into kindergarten.”
There is no doubt that Angela is a badass! She sent two well-rounded, intelligent young men out into the world, has advocated and worked tirelessly to provide a nurturing environment for Luke, has maintained a successful, 25 year marriage and hasn’t lost herself in the process. Today, she is happy in her job and has managed to maintain and even grow a group of kettlebell enthusiasts during a pandemic. Personally, I am proud to call her a member of my tribe.